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Anyone have ACT Chemo Treatment?

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Topic: Anyone have ACT Chemo Treatment?
Posted By: girlpower731
Subject: Anyone have ACT Chemo Treatment?
Date Posted: Sep 03 2009 at 7:16am
Is there anyone here that has gone through ACT Chemo treatment?  My original oncologist wanted me to do 4 treatments of CT Chemo but when I got my second opinion, the new oncologist strongly recommended ACT Chemo and more sessions-- 4 of AC and then 4 of T.
 
Has anyone gone through the same treatment that can share some insight?  I'm choosing to do it every two weeks rather than every 3 weeks (Dr. recommended that also).  I realize everyone is different, but can anyone share their story with me, either in a post or private message?
 
I'll be 32 when I receive the treatment, healthy otherwise with the exception of BC and migraines.  I am stage 2a and had a lumpectomy.  The 2nd oncologist is also strongly recommending that after chemo is done, that I go back to have another surgery to make the margins clear.  Prior to that I'm taking a genetic test to see if I have the genes BRCA1 and BRCA2.
 
I have to admit, I'm still somewhat of a newbie.  I just got diagnosed July 31st.  If I have either gene mentioned above, that gives me higher risk for ovarian cancer and breast cancer reaccurance, correct?  If I choose to have a double mesectomy after chemo (and get implants) does that rid my chances of having breast cancer again?  The cancer never metasicized, no lymph node involvement.  Or is there still opportunity to develop something after you have implants?
 
PS--If I have the gene, I'm planning on removing my ovaries once I am clear and had a baby through IVF.  I'm harvesting my eggs to freeze embryos in the coming weeks.
 
Any insights you can share would be great.  Wink
 



Replies:
Posted By: Kellyless
Date Posted: Sep 03 2009 at 7:37am
You'll find that a lot of us here had the exact same chemo, dense dose AC x4, T x4 - every 2 weeks on the whole thing.  You can ask us ANYTHING and we'll be happy to answer the best we can.  Deep breaths, one thing at a time.  Everyone kept telling me waiting was the hardest part - and it is!  It sounds like you are doing all the right things, asking all the right questions. 
 
Are you married?


-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: girlpower731
Date Posted: Sep 03 2009 at 8:05am
I am married.  My first chemo starts on our 2nd wedding anniversary.  We've been together for 7 years total.  My husband is handling my BC worse than me.  He truly loves me though.
 
Because chemo sessions are closer together, how bad does the body get hit compared to them being spaced 3 weeks apart?  Did you feel that once you starting feeling better another chemo session started up, or did you have times that you felt ok in between sessions?  My attitude towards BC is whatever it takes I'll do it. 
 
I'm getting my hair cut two weeks from today and having a "hip hat" made in Tampa using my real hair.  I'm getting a wig that day as well.
 
The only reason why I'm waiting to start chemo (last week in Sept) is because of the fertility treatment.  I have to harvest those eggs.  My husband and I were supposed to start a family next year(the regular way).  Obviously that will have to wait, but as long as my uterus is ok after chemo, I should be able to have a baby with the embryos.
 
Tongue


Posted By: unklezwifeonty
Date Posted: Sep 03 2009 at 8:44am
Girlpower,

Do ask your doc if they can do the Taxol weekly over 12 weeks instead of biweekly over 8 weeks. The 4 cycles of AC would still be biweekly. There is research that indicates that to be 3-4% better in terms of overall and disease free survival.

Prophylactic removal of both breasts and ovaries substantially reduce your chances of getting breast and ovarian cancer. However, there is still a 2-3% chance of getting breast cancer in the very little tissue left.

Love,



-------------
Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).


Posted By: girlpower731
Date Posted: Sep 03 2009 at 9:36am
Is Taxol the same as Taxotere?  Taxotere is what I would be getting (generic name Docetaxel).
 
Thank you all for your info.  Pink%20Ribbon


Posted By: unklezwifeonty
Date Posted: Sep 03 2009 at 9:58am
Taxotere is Taxol's cousin. They are both in the Taxane family and work in very similar ways.

In a head to head study weekly Taxol had the best results, followed by triweekly Taxotere followed by triweekly Taxol followed by weekly Taxotere. The differences between DFS rates were like 1-3% between the 4 regimens.

Do ask the doc why she chose 2 weekly Taxotere for you over weekly Taxol. Believe it or not, often times it is just convenient for the doc and/or patient to get chemo 4 times than 12 times. If you can get 12 weekly dosage, go for it.

PS: Corrected errors in my old post to prevent future readers from being misled.





-------------
Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).


Posted By: unklezwifeonty
Date Posted: Sep 03 2009 at 10:06am
Originally posted by girlpower731 girlpower731 wrote:

Is there anyone here that has gone through ACT Chemo treatment?  My original oncologist wanted me to do 4 treatments of CT Chemo but when I got my second opinion, the new oncologist strongly recommended ACT Chemo and more sessions-- 4 of AC and then 4 of T.......


The jury is still out on whether Adriamycin (A) helps for TNBC and if so, how much and whether it s worth the risk of heart damage and other side effects. Ask the original oncologist (or both of them!) why they recommended the treatment plan they recommended. The answer would educate us all. Some doctors give vague answers some times like "research has shown" or "it is the best treatment for you". Ask for copies of research papers to back their claims.

Here is one meta-analysis study that indicates that Adriamycin may be ineffective for HER2 negative BC. There are other meta-analysis studies too.

http://www.cancer.gov/clinicaltrials/results/HER2-anthracycline0108 - http://www.cancer.gov/clinicaltrials/results/HER2-anthracycline0108

And recently a Phase III Clinical Trial (NSABP 46) was started for HER2 negative BC which will compare TAC vs. TC vs. TC and Avastin. They usually don't use regimens in Phase III clinical trials that they have reasons to believe would reduce your chances, so I suspect TC is almost as good as TAC. This trial is:

http://clinicaltrials.gov/ct2/show/NCT00887536 - http://clinicaltrials.gov/ct2/show/NCT00887536

-------------
Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).


Posted By: Kellyless
Date Posted: Sep 03 2009 at 12:46pm
Freaked out now Girlpower?  I would recommend you see two oncologists and get two opinions - second opinions are important!  Take a tape recorder and record your appointments - then play them back later and make notes.  Your decision will come to you. 
 
Here's to hoping you come back negative on the mutation, then the ovaries can just stay put and you won't have to go thru the additional surgeries.  Odds are you will be negative, although it's still good to do the harvest, as this put me into full blown menapause.  You might get your periods back since you are younger (I was 45), but better safe!
 
I'm very glad I did the every 2 weeks and got it over with.  My onc said the 12 week sked didn't offer me any big  difference (1% not being big), the only reason to do it would be if I couldn't tolerate the higher every other week dose.  It wasn't fun, but I made it and got it all behind me that much faster.  The sooner I finished the better for my teenage son that suffers from a chronic illness.  It was completely "doable" as you will hear everyone say!  Re
 
On the A/C I felt bad for a week at a time - so I felt ok a week at a time.  Taxol I was able to function better, with a shorter down time.   To really feel better you have to get it behind you - so that's another plus to every two weeks instead of 3 - it's over quicker. 


-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: girlpower731
Date Posted: Sep 03 2009 at 1:40pm
Believe it or not, I'm actually not freaked out.  I'm ok with everything.  I went to this local wig store and tried on some more wigs.  The thing about wigs, they never look as good on you as they do the model (or at least that's how I feel about myself right now).  But then again, I still have a full head of hair so it's not fitting me right.  Two more weeks and the hair is getting chopped!!!
 
Thanks unklezwifeonty for the links.  I'll print those out tonight, read them and bring them to my oncologist appointment tomorrow.
 
So you think 12 weekly doses of taxol with biweekly of AC (4 total) will be ok for a body to handle?  Was this what you did?
 
Kellyless--the reason for the frozen embryos is because aside from this whole BC thing and having chemo, my mom's side have menapause prior to 40yr old.  1% of women in the US hit menapause prior to 40, that being my family included.  My mom was 37, my aunt 36 and my grandmother 38.  So I needed to do this to keep my sanity.  If I don't get my period after the treatment (oncologist said 25% of premenapausal women do not within 2 years of ending chemo treatmentand that's usually a cutoff point), I'll still be able to use the embryos in my body with the help of the fertility doctor.  That's something I never new prior to being in this situation. 
 
On a slightly different topic, has anyone that has menapause ever use bio-identical hormones?  It was on the Dr. Phil Show, his wife uses it. 
 
So do you all think it's possible to work flex hours during all this, I'm thinking a couple months into the treatment (still in chemo though)?  I'm not talking 40 hours a week, it would definitely have to have flexible hours in case I'm not well.  What are your thoughts?
 
 


Posted By: unklezwifeonty
Date Posted: Sep 03 2009 at 3:25pm
Originally posted by girlpower731 girlpower731 wrote:

........So do you all think it's possible to work flex hours during all this, I'm thinking a couple months into the treatment (still in chemo though)?  I'm not talking 40 hours a week, it would definitely have to have flexible hours in case I'm not well.  What are your thoughts?


I am also considering flex hours from home. It should be possible 2-4 days per cycle depending on how I handle it and it would probably help with the recovery by diverting the mind somewhere else. I'd recommend that you work from home as opposed to going to work. The natural immunity weakens hugely due to the depletion of white blood cells (wbc), even after they give you neulasta shots to make the wbc count go up. Do still to watch out for any symptoms.

I think you have the right flexible attitude and acceptance of your disease to manage it fine.



-------------
Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).


Posted By: Frankenboob
Date Posted: Sep 03 2009 at 4:09pm
I just saw my oncologist and she is recommending the Adreamycin/Cytoxan every 3 weeks 4 times, then taxol every 3 weeks 4 times...I also will have a muga scan and PET scan. I am having a port put in next Friday. We talked about all options and well, I guess this is the best one. My tumor was originally thought to be 2cm...it's actually 4.5cm x 4 cm. I guess 2 lymph nodes are involved. We won't even talk surgery until I have chemo.


Posted By: Kellyless
Date Posted: Sep 03 2009 at 4:55pm
All the docs I've seen say NO WAY to any hormones, bioidentical or not.  It's not worth the risk to take anything hormonal, not even black cohosh (an herbal remedy that has estrogen).  Oprah has caught a lot of flak for pushing the bioidenticals - very controversial. 
 
I am lucky that I work from home - usually full time.  I would take off 4 days for every A/C - 3 for Taxol - or so, not the same very time.  The anemia made me really tired, I didn't have a lot of stamina.  Working from home I didn't have to worry about germs either, big bonus. 


-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: Nancy
Date Posted: Sep 03 2009 at 5:31pm
Dear girlpower,
 
Yes you can take biodentical hormones, but you have to find a doctor who is willing to work with you after a dx of bc. My Lori has been on BHRT since early June and as she said finally has her life back after bc. She researched thye BHRT for months before looking for a doctor/antiaging clinic.
 
Sunris just posted a thread on that yesterday to which no one replied. There have been many discussions on BHRT, and it always comes down to the fact that the oncs say no! Well, they need to become more educated in the antiaging field of medicine.
 
As Lori said, it is not her responsibility to educate them, it is theirs, as more people, both women and men are looking for quality of life without taking drugs which only compound the problems. Lori was willing to sign a waiver with her doctor to get the biodenticals, but it was not necessary.
 
Donna...user name sibu is also on them and Dawn...user name Sunris will be taking them also. Lori finished all her treatments in January of 2008, and even though she changed her diet drastically, and continued her exercise routine faithfully, was still feeling as though she did not have the quality of life that she wanted...and deserved. Her husband is also taking BHRT.
 
I doubt that you could take the BHRT while on chemo, but when you are finished with treatments, (or even now), you should definitely research this field of medicine. If you want more info on the BHRT, just send me a private message.
 
There have been many threads discussing BHRT, and you can do a search to read them.
Hugs,
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: unklezwifeonty
Date Posted: Sep 03 2009 at 5:33pm
Originally posted by Frankenboob Frankenboob wrote:

I just saw my oncologist and she is recommending the Adreamycin/Cytoxan every 3 weeks 4 times, then taxol every 3 weeks 4 times........


Frankie,

Curious why your oncologist did not recommend the:

1. AC every 2 weeks 4 times and then T every 1 week 12 times?

2. AC every 2 weeks 4 times, then T every 2 weeks 4 times.

Both these regimens are known to be more effective and tolerated better than the one your oncologist recommended. Did you talk about these 2 options? What about Taxotere and C every 3 weeks (no Adriamycin at all)?

Love




-------------
Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).


Posted By: 123Donna
Date Posted: Sep 04 2009 at 5:25am
I'd definitely ask your employer if you can work flex hours.  Do you have the option to work from home?  I had a bilateral mastectomy on 6/30 and started chemo on 7/23 (T/C every 3 weeks X 4).  During all this, I've been able to work from home.  I have online access to my work computer (Logmein.com).  It's been great because I haven't had to go into the office and be around a lot of people and I can work on my schedule based upon how I feel.  There's no rush to get up in the morning, get dressed and drive to work, etc.  I work with all women and they have been very supportive and protective of me.  I hope your employer can give you the flexibility you need.  Good luck with your treatments.

Donna


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: LRM216
Date Posted: Sep 04 2009 at 2:16pm
I had 4 DD AC every two weeks and was supposed to have the 4 DD Taxol every two weeks, but after my first taxol I developed neuropathy pretty bad and onc was very alarmed (fingertips and bottoms of feet).  She then switched me to Taxotere for the last three rounds every three weeks as it is supposed to be more gentle on the neuropathy.  She was right.  I have my last taxotere on the 9th then on to rads 4 wks later.  I wish you the best of everything.
 
Linda


-------------
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33


Posted By: unklezwifeonty
Date Posted: Sep 04 2009 at 4:00pm
Today I visited an oncologist who was very nice and very clear in recommending:

4 Biweekly Cycles of AC => 12 Weekly Cycles of T

I was already sold on this regimen for ACT.

As far as Adriamycin is concerned, she indicated that the indirectly collected data that Adriamycin does not work for TNBC has not convinced many oncologists. Apparently, most oncologists are not willing to treat TNBC using just TC, which IS one of the regimens in the standard of care and oncologists can not be sued for using that regimen.




-------------
Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).


Posted By: LRM216
Date Posted: Sep 04 2009 at 4:21pm
While I appreciate your respect for your oncologist, and what you wish to believe, please also have that same respect for those of us whose oncologists do not feel as your oncologist .  Thousands of us have recently and are continuing to undergo AC and 4 doses of either Taxol or Taxotere and have confidence in our oncologists and our futures.  There are many papers stating AC is a first line of defense for TNBC.  INHO, you are doing a grave injustice to all the women who have had the ACT regime, as well as the TC regime.  While you may certainly have your opinion, please do remember that it is only your opinion based on what you have been told.  It is not written in concrete, and if it was, it would be the only treatment used by all oncologists, which it most certainly is not.
 
Linda


-------------
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33


Posted By: unklezwifeonty
Date Posted: Sep 04 2009 at 5:05pm
Dear Linda,

I agree with you that the treatment recommended by my onco today is not written in concrete. I was just sharing what she told me was the best treatment for me from the standard of care treatments available today. She also strongly suggested that I seriously consider trial ECOG 5103 which has 2 arms that add Avastin to ACT.

I also agree with you that this is not the only treatment available to oncologists. It would be tragic if it were.

I am not a medically trained person. From the little that I have read on the internet and heard from doctors, I believe that for TNBC, the different regimens that people are getting, e.g. TAC, TC, CMF, TFAC, CEF, Platinums, +/- Avastin, etc. as well as the different schedule variations of ACT are all viable regimens out of which the oncologist selects the ones for the particular patient, their exact disease, stage, node status, their age, menopausal state, heart and other medical conditions, convenience, comfort factor, etc.

Maybe I should have added all these caveats to my email. I am sorry I didn't and I am also sorry that I came across as undermining confidence in your oncologists.

Love



-------------
Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).


Posted By: LRM216
Date Posted: Sep 04 2009 at 5:15pm
Thank you, and I wish you all the best with your treatment and hope your journey is smooth and uneventful.
 
Linda


-------------
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33


Posted By: unklezwifeonty
Date Posted: Sep 04 2009 at 5:17pm
Thank you for your wishes Dear Linda. Best wishes to you too.


-------------
Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).


Posted By: girlpower731
Date Posted: Sep 04 2009 at 5:40pm
How does one go about picking a place to get their chemo.  There is a fairly new cancer center not far from where I live.  Up until today, I was planning on going there. 
 
I went for my second appointment with my main oncologist and I don't feel that it's the right fit.  Does that make me a bad person?  I feel that this particular person (which I will not name) is just going through the motions with me without really looking at my unique situation.  I really liked how my second opinion really felt passionate about my case (that's pure opinion).  I felt that oncologist #2 did everything they could to figure out the best plan for me and I'm greatful for that.  This second oncologist will have a new cancer center opening this October and it's supposed to be state of the art.  The original place where I was going is new as well, only 1 year old, but on a much smaller scale.
 
What do I need to look at in determining where I want my treatment?  I am going to meet with another oncologist at location #1 to see if that is a better fit and I'm going to contact oncologist #2 and see if I would be able to be one of their patients or if I would be with someone else on their team.  Convenience shouldn't be a determining factor.  If I use oncologist #2's treatment regimen, should it matter who is treating me?  I'm just so confused right now.  Can someone make some sense of this.
 
On a side note, my brother does use location #2 (different oncologist though since his is lung cancer) and he thinks it's great. 
 
Also, if I do the ACT treatment it's pretty set in stone that I'm going to have a port, right?  When the original plan was 4 sessions total of CT there was no port.  Does the port hurt after it's in?  I've never even had a drain after surgery.  My brother has the port, but I've never seen it on him.
 
It's sad, I'm so stressed out now, just wait till next week when I get injections of hormones in me (I'm harvesting my eggs in a few weeks).  I'm trying to make sound decisions now before I get all emotional.
 
One final question.  I know nothing about ports.  Can they draw blood from ports or do you still get stuck in the arm for that?  They gave me a video but I can't watch it.  If it has to get done, the sleep shades go on and it gets done. 
 
 
 
 


Posted By: unklezwifeonty
Date Posted: Sep 04 2009 at 6:23pm
Dear GirlPower,

1. Many factors go into choosing where to get chemo. How you like the oncologist and the nursing staff's, their bedside manner, the quality of care they give you, how often and when the doc will see you during treatment, their patience, whether they have everything thats needed to get tests, scans etc right there or whether they will send you different places, proximity to your home/work etc.

2. Personally I would not like to go back to the first oncologist and ask them to administer some one else's recommended chemo into me. But it is totally fine by some. You have to do what's right for you. There is no "right" here. Although from your post it appears that you like the second oncologist. Besides giving you the treatment plan that made sense to you, the doc was more in tune with you, and your brother goes to that facility and has recommended it. And they will have a newer, better facility better!

3. Here is a good site describing ports. I am told that intervention radiologists are better trained to place the port although surgeons do a fine job also.

http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Linesports/Implantableport - http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Linesports/Implantableport

Good luck!

Love,



-------------
Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).


Posted By: cg---
Date Posted: Sep 04 2009 at 6:30pm
Dear girlpower731,
 
As a person who 'broke up' with her first oncologist...I knew the first meeting we were not a 'right fit'.  The fact that he would not tolerate any questions, and information was on a 'need to know basis' and I didn't need to know anything (according to him).  Do not let convenience be a deciding factor.  You are placing your life in the hands of this oncologist and his team.  They must meet your needs....you need to be treated by the most aggressive, evidence-based treatment protocol for your TNBC.  You must have an oncologist/team that is knowledgeable about current treatments, studies, trials, research, regarding your TNBC.  You must have an oncologist/team who gives you information so that you may make INFORMED decisions and be open to discussion without feeling threatened.  You must have a patient focused team - not a convenience focused team.  You must have access to support, education, services to address your needs - side effects from chemotherapy, etc.
 
If you do not want a port...ask about the option of a PICC line inserted by an interventional radiologist...they can draw blood work and give chemotherapy through the PICC line. 
 
Remember this is all about you....if you sense a dismissive attitude from the first oncologist....this may be a foreshadowing of how he will respond to any secondary concerns you may have along the course of treatment.
 
I went from tonsillectomy age 5 to mastectomy age 53 (and nothing in between). I have a needle phobia - you name it scares me about hospital settings....but a funny thing happens - you 'just do it'.  Mark it off the list and move to the next - because at the end of that list...there is the bottom line - "Getting on with the rest of my life".
 
Do not fear chemotherapy - (okay I never looked at the needles) but - I called it 'liquid gold' coursing through my veins.
 
You can do this and we will help you.
 
 
Love,
Connie
 
P.S. I drive more than two hours to my new oncologist - and I wait hours some times to see her....and believe me it is worth it just to feel safe, and well cared for - not dismissed and irrelevant.
 


Posted By: girlpower731
Date Posted: Sep 04 2009 at 7:09pm
I will call oncologist #2 on Tuesday and see what my chances are to being a patient of hers then.  If not, maybe she can recommend another oncologist on her team that has her passion and commitment towards their patients.  The second place will be a world class cancer center.
 
The 14-story, nearly 500,000 square-foot building will include 112 inpatient beds, outpatient treatment rooms, expanded operating rooms, infusion suites, diagnostic imaging services, therapeutic radiology, a specialized Women's Cancer Center and the Yale-New Haven Breast Center/GYN Oncology Center.
 
This second place may require some waiting, both in traffic and from having more patients, but Connie I think you are right, piece of mind is a powerful thing, to know that you are in the right hands.
 
Right now I am not working.  I was hoping to go back to a temp position that I had when it gets closer to winter, but I'll see how I feel after I have a couple chemo sessions under my belt.
 
As for chemo, I'm not scared.  Maybe the night before I may be a little anxious, but I'm going through this process as whatever it takes, I'll do it.  So while I may sound sorta like a "baby" at times with the whole port thing, if it's needed (and it seems like it would be with ACT) I'm gonna put my night shades on and get it done.  Mark my word though, I will NEVER watch that video that the doc gave me.  Do what you gotta do, but I don't need to know everything, that is my thought. 
 
For the women out there that were premenapausal before treatment, did you experience any ranging hormones during treatment or did that subside drastically?  The reason why I'm asking is this--I have been on a birth control that allows me to get my period once every three months.  It has helped me tremendously with my migraines.  With a typical monthly period, I would get migraines two weeks prior to the period (ovulation time) and then a big one during my period that would knock me out.  I'm wondering if my hormones will kind of fall asleep and thus have the migraines stop.  I'm not opposed to stopping the birth control pills, but I want the right to revisit the situation if my migraines get out of control.  I can't imagine chemo every two weeks and migraines either both those week or the off weeks. 
 
Hopefully I'm be ok, gotta focus on the big picture, having a beautiful baby when I'm healthy sometime in the future.


Posted By: Frankenboob
Date Posted: Sep 05 2009 at 1:45am
Girlpower,
 
Do you by chance have anyone who is going to these appointments with you? I find them to be overloaded with information and my friends have been able to ask questions I never thought of. I feel very blessed where I receive my treatment. Everyone is so kind and patient. I had back to back appointments with my oncologist and breast surgeon and the breast surgeon waited for me (I was and hour and 45 mintues late from the oncologist's appointment). They are never rushed, never look at watches or clocks or act bored...they sit and talk with me until I am done. With the recommendations, they thoroughly explain everything, the why, the steps, and then they each have nurses who even do a follow up with me. If you can, please have someone with you...and I wish you all the best...it sounds like you have a lovely plan with a new baby also!! Speedy recovery!


Posted By: unklezwifeonty
Date Posted: Sep 05 2009 at 5:15am
Originally posted by Frankenboob Frankenboob wrote:

Girlpower,
 

Do you by chance have anyone who is going to these appointments with you? I find them to be overloaded with information and my friends have been able to ask questions I never thought of.....


Excellent suggestion Frankie. DH goes with me every visit and does not leave until he gets all our questions answered. And believe me we have lots of questions every visit!!!



-------------
Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).


Posted By: Nancy
Date Posted: Sep 05 2009 at 7:28am
Dear girlpower,
 
In the chemo tips there is a detailed post from Connie about the port/PICC line, and you might want to read that. Trust me on this one, as Connie has posted many times as to the "right person" to do both procedures, and this is very important. Lori did not have either, and of course near the end of her 6 chemo treatments, her veins were getting hard. Now she has to have blood draws from her hand with a pediatric needle.
 
It is a fact that chemo destroys all your veins, not just the ones used for infusions.
 
It is also a good idea to take some sort of recording device with you to your appointments, and the doctors should not object to this. You are not going to remember every little detail which is explained at that time, and every little detail is very important.
Hugs,
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: Tabatha00
Date Posted: Sep 09 2009 at 6:22am
Hey all.   I had my first A/C on September 3 and other than some sensitive tummy issues I handled it o.k.   I still feel a little nauseated but I don't know if it's just ME thinking about it or if I really have it!    lol    I'm anemic so I have to take iron pills (which could be the culprit too).   
 
Anywho, I'm having 4 A/C (every 2 weeks) and then having 12 weekly Taxol treatments.   I'll have bilateral mastectomies after that and I'm assuming radiation since I had microscopic cells found in one of my lymph nodes during a biopsy.
 
I'm just wondering........Is Taxol easier on the stomach than A/C?   I wish they would have given me a pamphlet on how to "prepare your stomach" before chemo but I'm not sure if there is such a thing.   Maybe I need to write one.  lol
 
I'm taking Prilosec and a colace every night for constipation (along with that darned iron pill).   I have my next chemo on September 18 and I am PRAYING the tummy issues don't rear their ugly head again because it was miserable!
 
 


Posted By: unklez
Date Posted: Sep 09 2009 at 6:46am
Dear Tabatha,

Taxol is believed to be easier on the stomach than A/C. But chemo in general attacks rapidly dividing cells and the GI tract does have normal rapidly diving cells. So you may get tummy problems with Taxol too.

To prepare your stomach before, during and after chemo, try bland food which has lots of fiber from whole wheat, fruits, veggies and protein from nuts, beans, legumes, low fat yogurt, lean meats and fish. Drink lots of light and clear fluids like water, unsweetened carbonated water, unsweetened iced tea. Avoid fried and sweet stuff.

By the way, if you have mastectomy and if your tumor was originally < 5cm and if you had less than 4 positive nodes, radiation may not be needed. Your oncologist may advise for or against it so be open to it either ways.

Regards, Unkle



-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: Tabatha00
Date Posted: Sep 09 2009 at 7:03am
I actually have an excisional biopsy on May 22 where they removed the tumor.    It was 2.2 or 2.5 cm (differing reports).   I'd actually rather have radiation as a precaution if it is going to reduce my risk for recurrence.   I'm doing neoadjuvnct (sp) chemo so I guess it will be up to what they find when I have my bilateral mastectomies after chemo is done.
 
I appreciate all the advice.  I'm hoping I can get my stomach in better shape before my next chemo a week from Friday.  


Posted By: unklez
Date Posted: Sep 09 2009 at 7:15am
Dear Tabatha,

Once they do the chemo they may not find any cancer cells in there during bilateral mastectomies. But let's see what your oncologist says about the benefit of radiation.

Also, DW wants to know what kind of reconstruction are you going for, if any?

Regards, Unkle



-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: 123Donna
Date Posted: Sep 09 2009 at 7:52am
Tabatha:

Are they giving you any anti-nausea drugs before or after chemo?  I know they give me Emend and another drug prior to chemo (T/C) and then I take Emend capsules and Desamethosone (Decadron) on day 2 and 3 following chemo, plus Pepcid.  This has helped prevent the nausea for me.  I know you're on a different chemo regime so it may be different for you.  I'd ask your onc if there is anything they can give you to help with the nausea.

After my chemo treatments, I crave bland food.  I found that I love yogurt, especially vanilla flavor and keep a refrigerator full of it.  Good luck with your treatments!  I have one more to go and looking forward to getting the taste buds back in my tongue and having food taste normal again.

Donna


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Tabatha00
Date Posted: Sep 09 2009 at 8:31am
I'm having skin sparing reconstruction after my bilateral mastectomies.    I'll be having an expander put in with an implant to follow after that I believe is how it works!
 
My onc gave me Decadron to take for the 1st 3 days after chemo, 2 pills in the morning and 2 in the evening.   They help great for nausea but my sensitive stomach was caught off guard by the chemo I think and it gave me a fit.    I'm now taking a Prilosec in the morning and then taking my iron pill and colace at night before I go to bed and HOPEFULLY the next treatment my stomach will be coated well enough to give me a better outcome.   Here's hoping, right?    lol


Posted By: unklezwifeonty
Date Posted: Sep 09 2009 at 1:41pm
Dear Tabatha,

The bilateral mastectomy will be skin sparing. What this means is that the breast surgeon will leave sufficient skin for the plastic surgeon to work with, provided the skin is not involved. This option is offered usually when you are going for immediate reconstruction. Otherwise, the breast surgeon removes more of the skin. The plastic surgeon will put in the expander right after that and stitch you up. Then he will fill saline into the expander during office visits over the next few weeks to expand the tissues. Once the expander has done its job and expanded the chest tissue, he will surgically exchange the expanders for the actual implants. About 3 months after that, if you want you can get nipple and areola reconstructed. Those 2 are usually simple in-office procedures.

The iron pill can also cause constipation. Ask your doctor if they would switch you to a low dose iron pill.

Decadron is a steroid and believed to be very effective for nausea. But it can cause increased appetite and weight gain. Do watch out for that. If you have worries on that front, ask your oncologist if other drugs like Emend, Kytril and/or Compazine would work. Each has some side effects but its something to ask about.

Love, Aunty



-------------
Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).


Posted By: KeepBreathing
Date Posted: Sep 09 2009 at 7:24pm
Re: BioIdentical Hormones

Hi, this is my first post. I have been reading the posts so far and actually have a response!

I took bioidentical hormones for 1.5 years when I first started having intense hot flashes etc. I was 47.
I also heard Dr Phil's wife was on them. My surgeon adamantly and passionately emphasized to me that it makes NO difference, hormones are hormones, she said. I am a proponent of all things natural, eat only organic food and exercise 6 days a week. oh well.






Posted By: unklez
Date Posted: Sep 09 2009 at 7:52pm
If the doctor indicates that hormones are hormones, then I'd go with bio-identical. Natural is definitely better.



-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: lysie05
Date Posted: Sep 09 2009 at 9:49pm
yes, i had this treatment last year.  i did 4 biweekly AC and 12 weekly T.  I tried to schedule mine on Fridays so i had the weekends to feel better.  Although i lost my hair and had other chemo related issues i was not very sick.  Mostly just tired.  I found that the medications were overkill and dropped back a little each week to find the right dose for me. 
 
My circumtstances are very similar to yours.  I had been married 7 months.  also was had migraines (no migraines since treatment started).  I did not have the gene but elected to have a hysterectomy as well due to the increased risk of ovarian cancer.  I also elected to have a double mastectomy.  I chose DIEP tram flap reconstruction.  They use your abdominal tissue to reconstruct.  The result is a tummy tuck (you probably dont need that since you havent had kids yet but i sure did)  and no problems that you get with implants.  while some people do well with implants i noted that even in a routine implant there was a 44% rate of problems in the first 2 years. Everyone i knew had scar tissue issues and also they have a limited life span .  So for me i decided this was the best option to prevent future complications and surgery.  It is a more natural look.  It does require more surgical time to reconstruct though.  Im very happy with the results.
i'm happy to answer any questions you have.
ps... chemo is a great opportunity for some me time.  find a great book or just enjoy a peaceful nap.


Posted By: vickyann
Date Posted: Sep 10 2009 at 2:57am
I took all three at the same time.... Every three weeks.First Two weeks i did not feel that great.... the third week was pretty good.  I took six treatments total. I am cancer free today! December will be the two year mark and I am having reconstruction....
Breast cancer positive does well with just TC but my doctor feels right now the A helps triple negative.....We are winning!!!!!!
I would not wait to long for treatment. TN is agressive...
God Bless you,
 


-------------
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09


Posted By: Nancy
Date Posted: Sep 10 2009 at 8:21am
Dear KeepBreathing,
 
"My surgeon adamantly and passionately emphasized to me that it makes NO difference, hormones are hormones, she said. I am a proponent of all things natural, eat only organic food and exercise 6 days a week. oh well."
 
Well, apparently your surgeon has not taken the time to become educated on the biodentical hormones. There is a huge difference between putting mares urine in your body as compared to a hormone which has the same molecular structure as your own hormones.
 
Also every GYN was prescribing the synthetic HRT and birth control pills for years, and now we have hundreds of thousands...no ...millions of women with bc, and yet they continue to prescribe them? This has been an ongoing discussion here on the site, and since my daughter Lori has been on them since June, I will continue to post that she now has quality of life.
 
So tell your surgeon that she needs to become educated on the bios/antiaging, as this is definitely the new age of medicaine. I will bring a post/thread forward for you that Sunris, (Dawn) started, so that you can read an article. But of course, you already know how great they are. Lori's rad onc was a bit upset when she told hm she was on the biodenticals, but as she said, she researched for months, and she also says that it is not her responsibility to educate her doctors....they need to do the research also!! Her PCP is fine with them.
 
Lori and I were talking the other night as to why women are not on the bios while on chemo. May I ask where you went for your biodenticals? Lori goes to Pittsburgh to an antiaging clinic.
 
The statement that a woman cannot take estrogen after bc is very puzzling. The body needs estrogen to be healthy, and it is not a case of the estrogen causing the cancer, it is an imbalance of all the hormones which most likely cause the bc...every type, and who knows...maybe all cancers. Are you on vitamin D3? The immune system is another problem also, and D3 helps that.
 
If you haven't gotten the book, Anticancer a New Way of life by David Servan-Schreiber, please do so. You sound just like my Lori...exercise all week, runs, hikes or bikes daily, organic foods, etc. Big%20smile
 
Ok again welcome,Clap
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: kirby
Date Posted: Sep 10 2009 at 4:30pm
Nancy,
 
I know you get so passionate about your beliefs however it does come across a bit judgemental. Fortunately everyone is different along with their opinions, beliefs & feelings as well as dr.s thoughts, beliefs on a subject. 
 
Aren't we all glad to have choice.


-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: girlpower731
Date Posted: Sep 10 2009 at 4:40pm
Lysie,
 
You mentioned in your post that you had migraines prior to having chemo treatment.  Since chemo treatment, have they completely gone away?  And were the migraines focused around your menstrual cycle?
 
I am concerned that I will be getting migraines every two weeks b/c I am no longer on the pill.  I may be getting lupran to suppress the ovaries (my fertility doctor is discussing it with my oncologist--the final say isn't in yet) and I guess there is always the chance that I could fall into menapause, but I would rather not start that stage of my life in my early 30's.
 
Has anyone here had lupran that was not menapausal and after treatment you did not have menapause, you period came back within the first 2 years after chemo ended (my doctor said 25% of women don't get their period back).  I wanted to see if anyone had any info/stories about lupran.
 
Thanks.
 
Girlpower


Posted By: girlpower731
Date Posted: Sep 10 2009 at 4:54pm
Since everyone is talking about birth control and bio identical hormones I have a couple questions.
 
Since being diagnosed with breast cancer (applies to women specifically) is it usual to switch your OBGYN to someone that has more experience with a breast cancer survivor?  The reason why I ask is b/c the midwife that I have seen through this journey (started July 27th, 2009) would rather that I NEVER go back on birth control, even though she knows that I am TN.  Now, let me just say that this particular midwife doesn't know a temendous amount about bc, her words not mine.  So I'm wondering if I should look for a doctor (OBGYN) that has more experience so that once my treatment is done (hopefully I wont be menapausal) I can go back on birth control to regulate my hormones.  Otherwise, I get migraines every other week.  I've been so lucky to be on seasonique (every 3 month regimen) that I get migraines less frequently.
 
I haven't done a ton of research about bio-identical hormones, but I was looking forward to having it as an option when it came time.  Is it hard to find a doctor to prescribe them since we are bc survivors, or not so much b/c we are TN?
 
Girlpower


Posted By: lroppe
Date Posted: Sep 11 2009 at 2:54pm
I had this exact same treatment (4 X AC every two weeks and then Taxol 4 X every two weeks).  I finished chemo at the end of Feb, then did radiation and finished that in May 2009.  I am doing great now.  While on AC, the first week was blech and the second week was really fine.  Taxol wasn't as bad as AC.  It is awful but also do-able at the same time.  You can do it, I promise!  Best to you!

XOXOX Laura


-------------
Laura
lumpectomy 10/7/08 5 mm lump
Dx 10/10/08, age 37,
wider margin lumpectomy and node biopsy 10/21/08
IDC Stage 2, Grade 3
8 rounds/every 2 weeks (AC+T)started 11/20/08 + radiation


Posted By: unklezwifeonty
Date Posted: Sep 11 2009 at 3:43pm
Originally posted by girlpower731 girlpower731 wrote:

....I'm wondering if I should look for a doctor (OBGYN) that has more experience so that once my treatment is done (hopefully I wont be menapausal) I can go back on birth control to regulate my hormones....


Dear GirlPower,

If I were you I'd definitely look for an OBGYN that has experience with BC. Some research hospitals have gynecological oncologists who specialize in cancers of the cervix, uterus, ovaries, tubes, etc. If available, these specialists would be another good source of advice. If not, do make sure your OBGYN talks to your ONCOLOGIST before prescribing birth control. It will also help if you share fertility concerns with your ONCOLOGIST at your next visit so she can recommend and treat appropriately.

Regards, Aunty



-------------
Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).


Posted By: Nancy
Date Posted: Sep 11 2009 at 3:57pm
Dear girlpower,
 
You asked about finding a doctor to prescribe biodenticals, and the one that Lori goes to does not have a problem at all. I have info on the biodenticals and will pm you with my email address. You have to look for an antiaging doctor.
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: LRM216
Date Posted: Sep 12 2009 at 2:58pm
Just finished my last taxotere on Thursday and am going through my se's as I type (it's Saturday).  While I am so very thankful I am done with the chemo, I am also scared to be done with it.  Make any sense?  I have 6 weeks of rads ahead which will start in 4 weeks, but I am nervous coming to the end.  I am so afraid of recurrence, but also realize I can't stay on this god forsaking chemo forever either.  I am trying to celebrate - I really am.  Anyone else go through this?
 
Linda


-------------
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33


Posted By: girlpower731
Date Posted: Sep 14 2009 at 6:30am
Just to give everyone an update on what I was going through earlier...
 
I ended up switching my oncologist (to oncologist #2) b/c I felt she had a better team and treatment plan.  My fertility doctor has been in contact with my new oncologist and they will be having me take lupran shots once I'm done with the fertility phase (exact date of shot still to be determined by doctors). 
 
I'm geting genetically tested for BRCA1 and BRCA2 this Weds.  The results don't come back for about 3 weeks.  I'm chopping off all my hair (it's pretty long) this Thursday Cry so that a company can make a hip hat for me with it.  If I'm lucky, I'll have it back in time for my birthday later this month.  Fortunately I did find a wig that is close to my real hair (shorter though) so I'm hoping for the best with it.  I did get a bunch of hats from headcovers.com which I've already been using (trying to get used to wearing hats in general).
 
I'm still a little freaked out about the port or PICC line going in, but as with everything else, I'll get over it in good time. 
 
Nancy:
Thanks for the PM.  I will definitely go get the book from Amazon and read up on it. 
 
Girlpower


Posted By: trip2
Date Posted: Sep 14 2009 at 8:00am
Girlpower,
 
This will all work out, it seems so overwhelming, so many things that need done.  It is important to try to focus on one day or one step at a time if you can do that.  Also a mild sedative can work wonders!
 
Losing your hair can be quite a traumatic experience for us but you know what?  It sounds like you are getting a grip and getting prepared, good for you!
 
Getting your port or PICC line will or should be a quick and easy procedure.
 
If you haven't already look for our chemo tips in the News/Resource section.
 
Also good for you for switching docs after deciding your preferred the other one.  We can't know for sure but we get a feeling from what is said that can make a difference.
 
Best wishes


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: lysie05
Date Posted: Sep 14 2009 at 9:08am
Girlpower,
Before all this started i was on the pill and had very severe migraines about every 6 months.  I had almost every neuro symptom from amnesia to impaired speech.  I know my period had an effect but i also found the barometric pressure also caused them.  I would monitor the weather and if their was a change i took an excedrin migraine.  i found it greatly reduced them. I felt sure they would increase when i was removed from the pill but I've gone about 24 months with no migraine now.
 


Posted By: LRM216
Date Posted: Sep 14 2009 at 10:10am
I think you will find the port a lifeline.  My onc at my last chemo last week asked me when I wanted it out. I am keeping my in for quite some time.  It saves on my tiny veins for bloodwork (a God-send) and since it's a power port can also be used for scans, etc.  Of course, I am also afraid to remove it - as God forbid, I don't know whether or not I could face having it put back in if necessary.  Good luck.
 
Linda


-------------
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33


Posted By: trip2
Date Posted: Sep 14 2009 at 11:13am
I'm hanging onto mine this time too Linda.  As you point out they are a blessing when we have to have so many needle sticks.

-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: unklez
Date Posted: Sep 14 2009 at 11:21am
Dear Linda, what is a power port and how does it differ from a normal port?



-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: Kellyless
Date Posted: Sep 14 2009 at 12:41pm

My doc told me that if I kept the port in I would need to go in once a month and have it flushed or it wouldn't be usable, and that he doesn't like to leave it in over a year because the tubing going into your vein can become brittle - and in some cases break off, which is dangerous.  So I went ahead and had it taken out - leap of faith! 



-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: unklez
Date Posted: Sep 14 2009 at 12:43pm
Dear Kelly, how painful is it to get the port placed and removed?



-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: trip2
Date Posted: Sep 14 2009 at 12:50pm
Kelly,
 
My surgeon did tell me also one year, never explained the tubing going brittle but that is par for other things he didn't tell me.  I did get mine removed one year after the first time.
 
When I was diagnosed again, got another port so hanging onto this one for awhile.  I do keep it flushed, it works great and unfortunately gets alot of use.
 


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: trip2
Date Posted: Sep 14 2009 at 12:54pm
Unkle,
 
Here is a power port,
 
http://www.powerportadvantage.com/about.html - http://www.powerportadvantage.com/about.html
 
How is your wife doing?


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Nancy
Date Posted: Sep 14 2009 at 1:04pm
Dear unkle,
 
If you have not already printed out the chemo tips, please do so. There are two long posts from Connie as to who should place the port/PICC line, and everyone should read that before making their decision. Most surgeons are not qualified to do the placement, but an Interventional Radiologist is. Just read Connie's posts in the tips.
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: unklez
Date Posted: Sep 14 2009 at 1:34pm
Originally posted by Nancy Nancy wrote:

Dear unkle,
 

If you have not already printed out the chemo tips, please do so. There are two long posts from Connie as to who should place the port/PICC line, and everyone should read that before making their decision. Most surgeons are not qualified to do the placement, but an Interventional Radiologist is. Just read Connie's posts in the tips.

Nancy


Thank you. I thought the only two choices were a Port and or a PICC line. Not sure I know how a Power Port differs from a Port or any other ports.

We are leaning towards Port because one arm of ECOG 5103, which we want to go for, goes on for 1 year and Ports last longer than PICC line if we understood right.

Also learned from posts by Connie and others that Interventional Radiologist do the best job at placing these access devices.

Wife is doing fine. Just an emotionally difficult time waiting for the oncologist consults.



-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: dmwolf
Date Posted: Sep 14 2009 at 1:57pm
Unklez, have you educated yourselves on the controversy around avastin, especially avastin without a concurrent cytotoxic?    Avastin with a cytotoxic I'd consider, that is, taking avastin during the chemo phase of treatment with ACT.  But continuing on Avastin for a year after the chemo phase might make me nervous.  What do you guys think?  How have you reasoned it through?

Best,
Denise


-------------
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.


Posted By: LRM216
Date Posted: Sep 14 2009 at 2:23pm
Not really sure, but my vascular guys only use the Power Port.  You can actually keep it in forever if you want, and I do know that it can be used with dyes for the cat scan, pet scan, etc.  I don't believe the regular ports can do that.  My onc has us get the power port, it was not any longer to put in and it's really easy to maintain.  Doesn't clog, etc.  I will have to go to have it flushed every 4 weeks though if I decide to keep it.  Soon as I find out more, I'll let you know.  I know the chemo nurses and the CT techs love them.
 
Linda


-------------
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33


Posted By: LRM216
Date Posted: Sep 14 2009 at 2:25pm
That's for sure, Pam.  I was never a good needle stick - so that will bother me more than keeping it in.  Good luck to us both!
 
Linda


-------------
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33


Posted By: trip2
Date Posted: Sep 14 2009 at 3:42pm
Linda,
 
I sure wish I had got a power port.  As you say the regular ones cannot be used for some scans so always frustrating to me.


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: trip2
Date Posted: Sep 14 2009 at 3:44pm
My surgeon actually put a port in me two different times and did quite well.  Never have had a problem.
 
It would be great if we could all run to the nearest specialist to get something done but that's not always the case depending for one thing on where you live.


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: trip2
Date Posted: Sep 14 2009 at 3:55pm
Hi Unkle,
 
I am so glad your wife is doing pretty well.  This is such a stressful time for both of you.  Is she taking a mild sedative, it would help.  Also she might try staying busy, distracting herself during the waiting time.
 
You are an amazing support for her.  That will mean the world to your wife.
 
Best wishes to both of you,


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: unklez
Date Posted: Sep 14 2009 at 4:25pm
Hi Pam,

She is sleeping fine and the anxiety is not bothering her unduly. No sedatives yet. But thanks for the suggestion. Certainly something to keep in our hip pocket as a possible remedy.

Regards, Unkle



-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: LRM216
Date Posted: Sep 14 2009 at 4:30pm
Oh, Pam, that is so the truth, isn't it?  Would be nice if we had all the options up front for everything we have had to go through (and will continue to!).  Guess that's asking too much.
 
Linda


-------------
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33


Posted By: girlpower731
Date Posted: Sep 14 2009 at 5:21pm
Pam,
 
I don't know if I'm crazy or just brave, but I'm going to get my hair cut (i will just be left with stuble) by myself.  Have others done this as well?  My husband thinks I should bring my mom but I think that it would be too uncomfortable for her.  Let me explain--the salon that I'm getting my hair cut was the house my mom was raised in by her parents.  My grandparents sold their property prior to their passing and it was turned into a salon.  The new owner obviously changed the place, but my grandparents room is still intact.  I began going to this salon around the time I was preparing for my wedding (anniversary Sept 29th--this will be my 1st chemo day and my sister-in-law will be induced this day for her baby) and I feel closer to my grandparents there.  I would much rather go there and pay my respects (so to speak) than to a cemetary.  I had my mom come to the salon on my wedding day (2 years ago) and I got one of those rememberance candles and we lit it.  It was a really tough time for her.  I think I'm better off by myself.
 
I read the chemo tips page and emailed it to my mom and best friend.  The next morning my mom sent me bullet points (how cute) of the things I need to pay attention to (as if I didn't read the whole post 3-4 times).  The next day I went on a shopping spree and bought all the items for the green smoothie (do I need to get this approved by my oncologist), I got more of the biotene mouthwash, got their toothpaste, biotene also has this oral balance dry mouth moisturizer (so I got that), the round spin brush, regular soap (3 different kinds, no joke.  My mom and I have different opinions on which is the best one) etc.  Did anyone use a recliner to sleep in for the first few days like the post suggested?  I'm contemplating whether I should get one or not.
 
I talked my oncologist's nurse about a port and PICC line.  She said they usually do the port and that they do use the interventional radiologist so I'm covered there.  I'm going to have to ask them about the power port on my next appointment.
 
Does this sound silly--on my first day of chemo I'm bringing an ice cream cake to my session for all to share (it will be my anniversary).  I figure it can put a smile on someone's face as well as mine.
 
Girlpower


Posted By: lysie05
Date Posted: Sep 14 2009 at 5:26pm
What a great way to handle your haircut.  As for your mom just let her decide.  I tried to protect my mom from things and sometimes she felt rather cut out when she was so worried and concerned.
 
the ice cream cake is great.  People were always bringing things to chemo and everyone loved it.


Posted By: cg---
Date Posted: Sep 14 2009 at 5:43pm
Dear Girlpower,
 
It is a sense of empowerment - I cut my hair off - I did not like chemotherapy make it fall out.
 
Secondly, any time is a good time for ice-cream. Celebrate the start of chemotherapy and your anniversary and an added bonus...sometimes having ice chips in your mouth or popsicles or freeze pops will prevent having mouth sores, maybe savoring some cold ice-cream will have the same effect.
 
Love,
Connie
 
P.S. Enjoy the ice-cream - because you will be going on a low-fat diet after treatment (prevents recurrence in triple-negatives)...I broke up with Ben and Jerry after I was diagnosed....I barely give them a glance as I make my way to
frozen ices.
 
 


Posted By: LRM216
Date Posted: Sep 14 2009 at 5:44pm
I think you ideas sound great!  Save me some ice cream cake!
 
Linda


-------------
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33


Posted By: unklez
Date Posted: Sep 14 2009 at 6:06pm
1. The ice cream idea sounds great. Where are you going for chemo? We might join you :)
 
2. Regarding going without your mother to the salon, I see that you are trying to do the right thing for her and spare her some emotional trauma. But if she still wants to go, I see no harm in letting her come along. This is the time to try and get full support of everyone in the family even if they provide that on their terms.
 
 
 


-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: Autumn10182001
Date Posted: Sep 15 2009 at 3:18am
Girlpower,
 
1st... leave it up to your mom, 10 yrs ago, when I had the 1st cancer, my mom was doing chemo for lung cancer, we did chemo together... but for the 1st two weeks, i didn't tell her anything and she knew something was wrong, so after that I hid nothing, and we were a team, I wish she was with me now.... as I go thru this cancer.
 
Where in CT do you live ? I live in Highland, NY and we got new furniture 2 months ago, nothing really wrong with the old.. but our daughter was getting her own apartment, well.. she couldn't fit the recliner, so I have a nice fluffy dark blue and cranberry recliner for free... it is in good shape.. sometimes it is hard to close, but I think the slide just needs adjusting..there is nothing else wrong with it, it is not even worn.
 
I may even have a way to get it to you if you want it and if you are within a couple of hrs of here.  private email me at mailto:autumn10182001@yahoo.com - autumn10182001@yahoo.com
 
I too got my hair cut way low, then had my daughter shave it... for me it was no big deal.. everyone said it would be emotional, but I am just not that type of woman, I didn't mind losing my breast, can't wait for them to take the other off after chemo, and wish they had 10 years ago....  then I wouldn't be in this mess now...  but then I haven't cared about losing my eye brows or any of that....  so... that's just me...
 
I go to the cemetary often to visit my Mom's grave, or course our stone is right next to hers... so that is a little strange... but I also go and visit my grandparents grave...  a few times a year....  it is comforting, would be nice to visit at another place.. well have to run chemo today..  let me know..


-------------
DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09


Posted By: trip2
Date Posted: Sep 15 2009 at 6:35am
Girlpower, first I must say you sound like such a kind and thoughtful woman.
 
Bringing an ice cream cake to your first treatment would be wonderful.  First of all it changes emotions a bit, distracts from your possibly being worried about your first time.
As a previous patient I observed someone a couple of times bring cupcakes or treats for those of us having our chemo and I thought it was very thoughtful and a great diversion from what we were doing.
Amazing you will be having a niece/nephew born, it will be your anniversary and your first day!
 
The story about where you get your haircut is a sweet one.  It will be emotional for you, perhaps since you feel it would be hard on your mother, perhaps a bring a friend?  Or alone is ok, however you feel most comfortable.
I just took a shaver to my head as soon as it started to fall out, alone.
 
Yes many of us have used the recliner.  Usually after a surgery when it is difficult to sleep in bed.
 
Anything you propose to want to take during chemo must be discussed with your Oncologist.  It sounds like you are getting prepared.Smile
 
So no you are not silly, take the cake, sounds fun and not only will you feel better but you will warm the hearts of others going thru the same thing.
 
Have we talked to you about genetic testing?  I cannot remember. 
http://www.facingourrisk.org - http://www.facingourrisk.org
 
Let us know, talk, ask, vent, whatever is on your mind!
 
 
 
 


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: girlpower731
Date Posted: Sep 15 2009 at 7:37pm
I'm actually going for genetic testing tomorrow morning.  The place where I am going usually has individuals schedule 3 appointments, but thankfully they are doing mine in just 2.  I had my mom get all our family history with cancer together for them to review.  And then next week I am going to a lecture on genetic counseling with my family.
 
On a side note about my older brother who was diagnosed with stage 4 lung cancer just 5 months prior to my bc diagnosis, his latest test results show that the cancer has grown slightly.  He's been getting treatment every 3 weeks and was on maintenance treatment just recently.  He is now going to have a more aggressive chemo drug (mom didn't know which one exactly) and he too will lose his hair.  He is just going to shave his off tomorrow, so he beats me by a day.  It shouldn't be a big deal to him since he's sported the bald look before voluntarily.  Hopefully his two girls wont get upset when he loses his eyebrows and eyelashes.  Are children usually ok with that stuff?  One is a pre-teen and the other is ~5 years old.
 
One question that I have regarding the port.  My port would be placed on the left side since the lumpectomy was on the right.  Regardless of the side, what type of shirt do I need to wear so that there is easy access for the nurses to do their job?  Any shirt with a scoop neck or v-neck work?  I'm assuming any crew neck shirt is out. 
 
Pam-thank you for your kind words.
 
Girlpower
 


Posted By: trip2
Date Posted: Sep 16 2009 at 5:51am
Girlpower,
 
Dag gone I am so sorry to hear about your brother's set back, I will include him in my prayers.  That had to be hard for your family to hear and now you with breast cancer.
 
It sounds like you have the gentic counseling thing all lined out, good for you.Approve
How neat you also have a family meeting to go to. 
Sounds like you are all supporting each other which will mean so much.
 
Yes to your question about a top to wear, something they can easily get to to access your port.  It doesn't take much but a boat cut shirt or v-neck, even opening a button near the top will work.  A crew neck might be too high.
 
So let us know about the hair cut and how it was for you. 
We all understand and will be with you in spirit.
 
Best wishes


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Nancy
Date Posted: Sep 16 2009 at 7:57am
Dear Pam,
 
I hope that I did not upset you by posting about the Interventional Radiologist. I know you have such a long way to travel for any appointments, as do many women, and since Lori did not have either a port or a PICC line, I was just hoping that Connie's recommendation would help someone preparing for this procedure.
Many Hugs,
Nancy
 
 
 


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: girlpower731
Date Posted: Sep 16 2009 at 11:16am
You know, I myself didn't realize that some people had to travel a distance to go to their appointments.  I was lucky to have a choice of 4 different treatment centers all within 30 minutes from where I live.  There are others further out as well, but these are in close proximity.
 
Girlpower


Posted By: girlpower731
Date Posted: Sep 16 2009 at 11:27am
Ok, I'm officially upset.  As many of you know I am undergoing fertility treatment so embryos can be created and frozen.  Next week is the week for them to take the eggs.  Apparently, my progress has been slow acting to the injections that my husband has been giving me.  If I don't show a lot of progress by Friday, I'm freaked out that they may end this for me!  They said that it's too early to tell right now, but that could be a possibility in the future.  This is one thing that I can't handle. 
 
I took the genetics test today and learned alot about chromosone 13 and 17.  I understand that if I am positive with one particular gene, I could get cancer that is estrogen positive and that if it is the other gene estrogen negative, or just plain old ovarian cancer.  I'm prepared to get rid of my boobs and get implants (if that is what is needed).  I'm prepared to get rid of my ovaries after having kids (they recommended no earlier than age 40 for health reasons).  But failing at the ability to produce eggs and being cut off, I can't accept it.  I probably sound insane right now.  This is affecting me more than cancer has affected me. 
 
I can't even mention this to my husband b/c he will just get even more stressed out.  He's fine not having children, it's me that it means a lot to. 
 
I need some positive words/vibes!  Or maybe just a virtual hug Broken%20Heart
 
Girlpower


Posted By: Tabatha00
Date Posted: Sep 16 2009 at 11:31am
I travel 2.5 hours (each way) to receive my treatment from UAB in Birmingham, AL.    They have a fantastic team and came HIGHLY recommended.   I don't regret my decision at all.
 
 


Posted By: lroppe
Date Posted: Sep 16 2009 at 12:01pm

Girlpower,

All I can do is send you my most sincere, heartfelt positive vibes!  And the knowledge that you are not alone that it is ok to feel absolutely put through the ringer, scared, exhausted, angry.  I am not going to tell you to "stay positive" because I am sure you hear that PLENTY from everyone on the planet.  Just know we are all here, feeling your pain and sending you every bit of mental support possible.
 
XOXO Laura


-------------
Laura
lumpectomy 10/7/08 5 mm lump
Dx 10/10/08, age 37,
wider margin lumpectomy and node biopsy 10/21/08
IDC Stage 2, Grade 3
8 rounds/every 2 weeks (AC+T)started 11/20/08 + radiation


Posted By: unklez
Date Posted: Sep 16 2009 at 6:59pm
Dear Girlpower,

I can see why you might be getting upset.

Please hang in there. It is too early to tell. Kids are not easy to have in normal circumstances and you are under a lot of stress which only makes it more difficult. Try to relax and dream of good things.

Regards, Unkle



-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: kirby
Date Posted: Sep 16 2009 at 7:02pm
girlpower,
 
Know that I am with you in spirit and am sorry for all you are going thru right now.
 
My daughters were 9 & 13 when I went thru chemo. They handled my baldness quite well. They were also used to seeing it somewhat as my mother had just battled ovarian for 3 1/2 years. I found my lump 2 weeks prior to her passing. I had to put off my recall mammo because of her services. It was not an easy time in life right then. I wore a variety of wigs and headwraps. My kids, more so the oldest preferred me with one specific wig that she felt was " more normal" looking.  They both handled it quite well. The elder girl even offering to drive one night when I picked her up from a function. [ I was/am a single parent] I think I had had chemo  a couple days prior and had worked that day. My energy went fast. I just told her hurry, get in the car, I have to go NOW ! It took all my focus. I did get home fine. Whew.
 
I am not BRCA +. It was just luck of the draw that my mother had ovarian  and I had BC so close together. There really isn't any other family history.


-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: susied
Date Posted: Sep 17 2009 at 12:50pm
Had my third A/C on Monday and am still in smooth sailing mode....have had no nausea (THANK YOU EMEND!!!!), very little reflux and except for the steroid rush I feel good.  Hate the bald thing but am ready for A/C  #4 in a week and them on to Taxol.....tumor is changing visablly so so I am a happy camper!  Of course  my energy level is punk and my level of concentration is for the birds but I have to say, while waiting for the other shoe to drop, I am doing much better than I ever expected......
 
susied


Posted By: Kellyless
Date Posted: Sep 17 2009 at 1:01pm
Girlpower - I swear I was offered a clinical trial of some drug that they would give me to put my ovaries "to sleep", then somehow they would re-awaken them after chemo!  I turned it down because I'm 46, my kids are 16 & 23 - I would be going into menapause anyway in few years.  Ask your onc about it, it sounds like you would be a perfect candidate for it.  Or has anyone else heard about it? 
 
I'm emailing my oncologist about it. 


-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: Kellyless
Date Posted: Sep 17 2009 at 1:13pm
Is this it?  http://www.clinicaltrials.gov/show/NCT00068601 - http://www.clinicaltrials.gov/show/NCT00068601  
It's called:
Phase III Trial of LHRH Analog Administration During Chemotherapy to Reduce Ovarian Failure Following Chemotherapy in Early Stage, Hormone-Receptor Negative Breast Cancer
 
This sounds like it!
 
I've emailed my oncologist as well.


-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: trip2
Date Posted: Sep 17 2009 at 5:02pm
Hi Nancy,
 
Did you upset me?  Absolutely not.  The information you gave and Connie talks about so much is excellent.
 
We just can't all run out and get a specialist for everything.  That said if they can do it that way than possiby that is the way to go.


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: girlpower731
Date Posted: Sep 18 2009 at 6:28pm
Thank you all for your kind words.  Since I last posted I got my hair cut off.  The hairdressers were all curious as to what I was getting done.  Imagine being at the salon and someone with long hair is getting these small sections put into elastics all around their head.  At first you could entertain the idea of an updo, maybe one that isn't so recognized.  The owner of the salon took care of me.  He was really kind and offered positive words and talked about experiences of people in his life that are on similar journeys.  After I was all sectioned off, I went into a private room where the actual cutting happened.  He was sensitive to my needs and even gave me styling tips for my wig.  He is very excited to see the hip hat that I'm getting made (he's never seen anything like it).  I don't mind the short hair as much as I thought I would.  I don't think he did a great job in cutting it and making it all blend together, but then again, it's really short and i have random waves in my hair.
 
I wasn't emotional at all during the cutting.  I thought that I would be, but I had my grandparents looking out for me from above.  After my hair appointment, I went to my priest for him to give me the prayer of the sick.  He was very comforting and told me that I could get the prayer as many times as I needed and offered his support. 
 
As far as the fertility situation goes, I'm still going through the process (they didn't make me stop, boy would there have been tears!! Cry).  So far I have 3 hair follicles that grew.  I'm hoping for some more progress over the next few days. 
 
Kellyless--I'll print out the study you attached and bring it to my onc appointment on Monday.  I think the drug my fertility doctor discussed with the onc was Lupran.
 
Girlpower


Posted By: susied
Date Posted: Sep 19 2009 at 6:27am
Originally posted by susied susied wrote:

Had my third A/C on Monday and am still in smooth sailing mode....have had no nausea (THANK YOU EMEND!!!!), very little reflux and except for the steroid rush I feel good.  Hate the bald thing but am ready for A/C  #4 in a week and them on to Taxol.....tumor is changing visablly so so I am a happy camper!  Of course  my energy level is punk and my level of concentration is for the birds but I have to say, while waiting for the other shoe to drop, I am doing much better than I ever expected......
 
susied
I think I am having more trouble with the neulasta shot than the A/C......not bone pain but breathlessness at times and a feeling of overall malaise.........and my eyes are wierd but I do not know which culprit to blame..(unless it is the steroid downer I get)...all in all after I opened my big mouth and said I felt fine I have been feeling kind of punk!  Teach me to brag won';t it?????
 
Hope you are all doing well..
 
susied


Posted By: trip2
Date Posted: Sep 19 2009 at 7:01am
Hi Girlpower, such good news really to hear the hair cutting went smoothly.  Between the warmth of your grandparent's home and the kindness of your hairdresser I am sure that created a bit of a support system which we could all use for sure.
 
Now I guess I am going to show my age here but have to ask after your talking about this twice, what is a "hip hat" and wish I could see a picture.
 
Have a good week-end,


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: trip2
Date Posted: Sep 19 2009 at 7:04am
Hi susied, what a bummer to hear you are having these problems.
 
I would suggest you call your Onc's office Monday and speak to one of the nurse's.  They will help you and advise what they think it might be and possibly write you a script.
 
Let us know.  I know many women have had issues with Neulasta, bone pain is one I can think of, usually when I got mine I was in the hospital that night with Neutrapenia so had many issues going on at the same time.
 
Here are some links for you,
http://www.drugs.com/pro/neulasta.html - http://www.drugs.com/pro/neulasta.html
 
 
http://www.caring4cancer.com/go/cancer/effects/neulasta.aspx - http://www.caring4cancer.com/go/cancer/effects/neulasta.aspx
 
 
Both of these mention respiratory distress so if you find it is of concern you might try reaching someone on call at your treatment center or going to the ER. 
 
 


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Kellyless
Date Posted: Sep 19 2009 at 8:32am

When I experienced breathlessness on A/C it turned out to be anemia.  Each A/C has a cumulative effect, so it's expected that you feel a bit worse after each treatment.  I told my husband after the 4th and final one, "it's a good thing this is the last one, because I don't think I could force myself to do another one."  All those crappy A/C induced symptoms fade away when you are done - which is quite awesome.  I was able to stop the Neulasta after my 2nd Taxol - and my WBC stayed high.  My anemia leveled out on Taxol, and improved pretty fast after I was done with all 8 treatments - Both WBC RBC are normal now - yippee!   Hang in there, it sounds like despite how you are feeling you are doing very, very well! 



-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: susied
Date Posted: Sep 19 2009 at 10:58am
So far, my bloods have been good so I don't think it is anemia but who knows.......I am hating A/C that is for sure....1 more of them and then on to Taxol but no idea what to expect with that!  My COPD doesn't help with the breathing stuff and I should be more diligent with my nebulizer but it is such an effort right now to set it up etc.......I am just SO beat up.....and hating this!!!!!   Last time I called the Onc with this she said to use the inhalers and keep track how long it lasted .......will check the web sites tho...thanks!
 
susied


Posted By: girlpower731
Date Posted: Sep 19 2009 at 4:55pm
Hi Pam,
 
I don't think a lot of individuals know what it is to be quite honest.  Someone mentioned it on another forum website that I used to log onto.
 
http://www.hatswithhair.com/DonateHairToMakeWig.aspx - http://www.hatswithhair.com/DonateHairToMakeWig.aspx
 
I cut my own hair for this, but honestly it's cheaper to use their hair (so it someone here already has no hair due to treatment, it's still something to consider).  I ordered the underhair for now, but I may get ponysport later this year so I can fit in more at the gym.  My insurance didn't accept this b/c it wasn't on their list of companies, which is ok.  The hair they use is real so you can flat iron it, curl it, etc. 
 
I completely understand the itchy head thing.  I'm trying to get used to my new wig (traditional type) and I just thought it was b/c I still had hair underneath and maybe I wasn't used to a very short do.  The hats with hair idea is great b/c it has that nice material layer that rests on your head.  Today was my first time out in public with my wig (I went to the Big E in MA). 
 
Girlpower
 
 


Posted By: trip2
Date Posted: Sep 20 2009 at 6:00am
Girlpower,
 
Thanks for the link, how clever is that?Smile


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Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: girlpower731
Date Posted: Sep 21 2009 at 8:52am
I went to the fertility doctor today and got great news.  I went from 3 follicles up to a whopping 15 follicles!  There is hope for me now!  Thank you Laura (lroppe), unkle, Kirby, and Pam(trip2) for your kind words and thoughts and anyone else that I forgot to mention.  This truly was the best news.  After the eggs are harvested, I should now within 72 hours how many are deemed good.  I'm keeping my fingers crossed.
 
Girlpower Thumbs%20Up


Posted By: lroppe
Date Posted: Sep 21 2009 at 11:53am
WOOOOOOOOOOOOOOHOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!  AWESOME NEWS!  Thank you for letting us know!!!!!

YAYAYAYAYAYAYAYAYAYAYAYAYAYAYAYAYAYAYAYAYAYAYAYAYAYYAY!
XO Laura


-------------
Laura
lumpectomy 10/7/08 5 mm lump
Dx 10/10/08, age 37,
wider margin lumpectomy and node biopsy 10/21/08
IDC Stage 2, Grade 3
8 rounds/every 2 weeks (AC+T)started 11/20/08 + radiation


Posted By: sassym
Date Posted: Sep 21 2009 at 4:31pm
I had this regimen. My ACT was unfortunately interrupted by insurance issues. My next and best Oncologist preferred Taxol over Taxotere and quoted me stats which I later checked. I tolerated 2 courses but developed severe R foot to calf edema and severe neuropathy. I'm Diabetic so that may have been the problem. Who knows what happened with me, but I completed two treatments and I'm happy that I did.

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Diagnosed: June 6, 2008
Diagnosis: Diagnosis: 6/6/2008, IDC, 3.5cm, Stage IIa, Grade 2, Lumpectomy, 0/19 nodes, ER-PR- HER2- 26 rads plus 8 boosts


Posted By: vickyann
Date Posted: Sep 21 2009 at 5:02pm
now you know why my i have a bear posted on my name...never stop fighting for yourself... You go girl!!!!!!!

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Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09


Posted By: Nancy
Date Posted: Sep 21 2009 at 5:06pm
  http://www.smileycentral.com/?partner=ZSzeb001_ZNxdm824YYUS">Baby  Dear girlpower,
 
Absolutely fantastic news, and fingers and toes crossed that many many are deemed good.
Many hugs,
Nancy
 
 
 






http://www.smileycentral.com/dl/index.jhtml?partner=ZSzeb095_ZNxdm824YYUS&utm_id=7923">

-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008



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