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To Chemo or Not to Chemo

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Topic: To Chemo or Not to Chemo
Posted By: kjhemminger
Subject: To Chemo or Not to Chemo
Date Posted: Nov 08 2009 at 10:41pm

Hi. my Mom has just been diagnosed with Triple Negative Breast Cancer. She has a lumpectomy. Her margins were clear. No lymphnodes positive. She had one tumor, that was 1.5 cm. She was expecting just radiation. However, now that we have seen the oncologist, he is suggesting that the recommended treatment plan includes chemo. He suggested TC, 21 day cycle, 4 cycles. She is very resistant to have the chemo. We were all at the appointment, but hear different things. She interprets that her recurrance chance goes from 75% to 70% by getting the chemo. She feels like for 5% difference, it sounds like a lot of toxicicity in your body. She also thinks that she will become such a hermit in the next year if she gets chemo that she will be depressed and crabby for the rest of her life. She is only 58, 2 kids, 4 grandkids. I feel like, whatever the increase, it's life. She's now suggesting that she'll probably have alzheimer's (like her mother) anyway, so why would she want to live longer if she's mindless. I feel like she's spiraling. However, I don't want to be insensitive. I don't want her to feel like everyone is against her. But, I don't want to lose her!! I don't understand the recurrance thing. I assumed recurrance in any form was really bad/agressive, and you wanted to prevent it.

Keep in mind. My husband is a five year survivor or a brain tumor. It was benign and they removed it. He is doing very well. Never had chemo or radiation. His was emergency, and we had no time to make decisions like this. I almost feel like that was better. I know it was easier. And yes, I also know that my Mom's decision is her own. I just can't decide if she's in the right frame of mind to just let go and see what happens. BTW, she's ok with the radiation. It's just the chemo she's leaning towards not getting.
 
You are all such brave souls. I cannot imagine being the fighter, rather then the supporter. I reach out and hug every one of you for getting up and fighting every day. Fighting the fear, fighting the fatigue, fighting the feeling of giving up.
 
Thank you for your help, in advance.
 
Kim



Replies:
Posted By: scared
Date Posted: Nov 09 2009 at 6:08am
Hello Kim,

Your mom's fears are real and the effects of chemotherapy is awful.  My wife is six months through 27 weeks of three types of chemotherapy drugs and is suffering from it.  But four cycles is different than 27.  Five percent chance may not be worth the price.  Triple Negative is a tough cancer to beat and keep from returning.  Chemotherapy and Radiation and surgery are the only tools to fight it.  For your mom it is sort of insurance.  The premiums are very high, and nerve damage takes a long time to heal.

Have her ask her oncologist what would be the very worse effects and then see if it will be worth that five percent chance.  For us it was.


Posted By: ChrissieD
Date Posted: Nov 09 2009 at 10:23am
Hi Kim,
 
Docs now always recommend chemo for TNBC.  It is very responsive to chemo.  Your mom, and all of you are still likely in shock and overwhelmed with all of the information you were given.  I would recommend you speak frankly with the onc about not doing chemo and what that would mean.  Also, consider getting a second opinion right away and have the conversation with that doc too. That may help you to see things more clearly.  Ultimately the decision is your mom's.  I would recommend finding a naturopath (if your mom can afford it as it typically is not covered by insurance ) who specializes in treating cancer patients.  If your mom does not get chemo the naturopath can recommend diet and supplements to help build her immune system and if she does get chemo then he/she can recommend diet and supplements to help better manage possible side effects from the drugs. 
 


-------------
39 from MA, Mom(8.5 and 6),
Lumpectomy IDC 1.5cm Stage I, Grade 3
ACx4 Taxolx4 dose dense started 11/17; Bi-lateral Mastectomy with expanders scheduled for 3/24/09
God is carrying me through !


Posted By: unklez
Date Posted: Nov 09 2009 at 1:21pm
Dear Kim,

The decision is clearly your mom's and all you can do is influence her to do what you think is the best decision for her. But please have your mom get a second opinion from a medical oncologist. The best ones with unbiased opinions are usually found at teaching hospitals.

With 1.5cm and no nodes involved her chances after lumpectomy and radiation are very good. But neither of those 2 therapies help reduce systemic chances (also known as risk of distal occurrences or metastatis).

As you probably know, any chemo therapy reduces chances of metastatis by a third or more. This statement can get a bit confusing so let me explain with an example. IF the risk of getting metastatis in the next 10 years is 24%, almost any chemo regimen would reduce that risk to 16%. A chemo regimen that includes taxane (e.g. T in TC) reduces risk that further to about 12%. A chemo regimen that includes an anthracycline (e.g. A in AC->T) could reduce that further to about 10-11%. As you can see, the benefit of A can be marginal when the risk is low to begin with and hence the doctor may not have mentioned that.

If it helps to decide, TC is much more gentle than AC-->T.

Supplements and diet changes can make a big impact to boosting her immune system (and should be used to compliment) but please have her meet another oncologist first before deciding to go purely the alternative route.




-------------
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: Nov 09 2009 at 2:00pm
Kim,

Your mom's diagnosis is very similar to mine, except I didn't have a lumpectomy, but mastectomy.  You may want to get a second opinion from another onc - it never hurts and will most likely help her make a decision.  I had the chemo T/C also and was able to tolerate it and the side effects.  My onc told me without chemo, the chance of recurrence was 25%, but with chemo, it would reduce the chance by 50% to about 13%.  While I know these are just statistics and they can vary, TNBC responds very well to chemo.  Chemo is almost always recommended as treatment for TNBC since we don't have alternative treatments available like tamoxifen for ER+ bc. 

We're here to help.  Just let us know!

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: dmwolf
Date Posted: Nov 09 2009 at 4:35pm
Your mom is so young.  She should do the chemo, even though it won't be fun.   I think her numbers are a little off - if she has about about a 30% chance of recurrence without chemo and a 20% chance of recurrence with chemo, she reduces her risk of recurrence by 33% with chemo.  She should think in terms of relative, not absolute risk when she makes her decision. 

-------------
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: Carol (Tenn)
Date Posted: Nov 09 2009 at 6:48pm

Kim,

Welcome fellow Illinoisan...(is there such a word)lol I am originally from Chicago but lived in Arlington Hghts for several years. Of course that was before you were born...
 
To put my 2 cents in...I am older than your mom and my tumor was 2.1cm. I choose to go the chemo route. I wanted to blast this thing with everything available. Even so I had a recurrence. The nasty little cells love to hide. Mine did, right on the incision scar where I found the lump 4 months after finishing chemo and rads. I'm telling you this so that you know that chemo is your moms biggest gun in the arsenal. No one knows whose cancer is going to recur but at least you know you did all you could to keep that from happening.
Just my 2 cents worth..
Good Luck...my love, hugs and prayers,
Carol


-------------
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13


Posted By: LRM216
Date Posted: Nov 09 2009 at 10:23pm
Kim -
 
I am a young 62, a widow, work full time and raise a 14 year old grand-daughter.  I have the same exact diagnose as your mom, with the only difference being my nodule was 1.2 centimeter in size.  I missed  just the mondays from work after the 4 DD Taxotere (had 4 DD Adriamycin first) - had all my chemos on a Thursday, had Neulasta shot each Friday a.m. after chemo and went into work - side effects hit on weekend, and usually went to work on Monday.  While I hope to God I never have to do it again, I was able to do it.
 
Triple negative has no other treatments other than the surgery, the chemo and the rads - then we are on our own.  I strongly urge your mom to consider shooting at this wild bird with all the ammo she has at her disposal.  I had side effects, low blood counts, neuropathy in toes and finger tips, but I would do it all the same. 
 
It's a nasty agressive demon - fight it as such.  Good luck and God bless.
 
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: kjhemminger
Date Posted: Nov 09 2009 at 11:59pm
Thank you all for your continued support. My Mom and Dad have been reading your responses. You comments and advice are all very helpful. The more information you have the harder it is to sort through. But, you are all experts in the area. Great to get it from the horses mouth!! God bless back atcha. Keep on fighting. We can all beat this thing.
 
Kim


Posted By: Marla
Date Posted: Nov 14 2009 at 10:40pm
Hi - I'm the Mom! Thank you for responding to Kim and thank you Kim for finding the TN section of Komen. I have been reading and researching seen my lymphectomy 10/19. At that time I was told that according my path report all I would need was radiation and 5 years of tamoixofen. then post surgery and meeting with my Oncolgist they hit me with the big "C" treatment. They then told me my hormones were mostly negative so chemo was the treatment of choice. Not until my daughters and myself have done more research did I become aware the I have TNBC a very specific  and "agressive" cancer. Up until now everyone kept telling me how lucky I was to have found it early when the tumor was so small, clean margins and clear nodes. When in reality TN seems to just bad as almost any BC no matter what stage.
 
I'm still struggling with the fact that I feel fantastic and anticipate feeling very bad (looking very bad) once I start chemo, and I'm not convinced all the toxins and other side effects are worth the gain. Seems like I'll die of thing eventually anyway - will this treatment give me 1 or 2 more years?
 
I do have an unbelieveable support network my husband, two daughters and many friends around me but even some as far away as China. I live in Illinois but will likely do my treatments in Florida - better weather and less exposure to flu etc. Monday I go to the Oncologist again, he is doing more blood testing. I can't just roll over and accept this treatment until I am absolutely convinced. The chemo suggested is TC. I really like my Oncologist, he comes highly recommended by several doctor freinds and others who have used him. He has been around long enough to have grown with the cancer treatment research and has many years of experience. I do trust his judgement - although he does base his desicions on the NCCN recommendations. However, any more definite information you can pass along to me would be greatly appreciated.
 
I'm still struggling with all of this.   MJ
 
PS Any advice on this cold cap thing? Does it work at all? If so, where would I get one?
 


Posted By: unklez
Date Posted: Nov 15 2009 at 12:23am
Dear Marla,

Welcome to TNBC Foundation! I do think that you are doing the right thing in questioning whether chemo would buy you anything. We have all struggled with that and similar questions. My 2 cents are pretty much already spent in my previous post, ie, I think TC is a very proper regimen for your case (I'm NOT a doctor). Will this treatment give you 1 or 2 or 10 years no one can say. But will it increase the chances of you will get more disease free survival years - YES.

The only thing I'd add is that the cold caps apparently do work in reducing the occurrence of hair-loss. A lot of women in countries other than US swear by them. Doctors in US have not quite accepted their use. Their theory is that the use of cold caps can constrict the blood vessels and hence reduce the delivery of chemo to hair and head region which could lead to reduced efficacy. I don't know if this has been proven one way or another.



-------------
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: Terje
Date Posted: Nov 15 2009 at 1:28am
Regarding the cold cap and the chemo not reaching the scalp, I'd like to know how many mets end up on TNBC patients scalps? I've read about using frozen fruit, ice cubes, or popsicles to prevent mouth sores caused by chemo, does this increase the chance of mets in the mouth? I think that doing what you can to reduce the side effects to make chemo more tolerable is better than no chemo.

Regarding the side effects of TC, are they guaranteed? Or do only a certain percentage of women experience the side effects? I mean, if it's not guaranteed that someone will experience all the side effects that are causing them to decide not to do chemo, why not start chemo and if the side effects are too severe, then change your mind and stop rather than not starting at all? And if one does have to change their mind and stop a treatment rather than giving up all together, maybe find other drugs that might have different or fewer side effects.

The other thing I think is important is, if the chemo does only buy someone an extra 1 or 2 years, we should remember that there are many medical advances and discoveries that happen every day and new study trials are starting all the time. This year we have a phase 3 PARP inhibitor trial that didn't exist last year that benefits 52% of recurrent TNBC patients with metastasis while the previous treatment only benefited 12%. We also have several other PARP inhibitors from other companies in phase 1 and 2 studies. And then there's all the new things going on that we don't even know about yet.

I don't know the answers to these questions, but believe they are important things to consider.


Posted By: Carol (Tenn)
Date Posted: Nov 15 2009 at 5:43am
I agree with both Terje and Unklez,
 
My treatment is standard for TNBC. My side effects were not that bad. A lot better than I anticipated. At the same time I've read of much more severe. A friend of mine that was diagnosed shortly after me had hardly any and we were on the exact same regimen. The most she suffered were fatigue and her food not tasting good.
So there you have it...just my 2 cents worth. My advice, go for it even if it only extends your life a couple of years. Just like Terje said...so many studies, so many chances for a cure or at least a more effective drug..
Love and Prayers,
Carol


-------------
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13


Posted By: MaryinSarasota
Date Posted: Nov 15 2009 at 8:47am
Hi Marla,

I live here in Sarasota, Florida. I did my treatment last May to November. The chemo is still the standard for now. I wanted to make sure the TAC got it all, to every last nook and cranny. I work at home so it was easier for me to just wimp out when I felt like it but that was usually the 4th, 5th and 6th day after the treatment. The worst for me was feeling like I had no energy, my feet and hands got numb and tingly, chemo brain and depression. There was no nausea or vomiting (they gave me meds for that.)

There are so many people here with bald heads, men and women... I never wore a wig, just a hat occasionally due to my head being cold.

Would I do it again? Yes.. No doubt. I really, really don't want to but I would.

Mary


-------------
53 @ Dx 5/08 Stage 1, grade 3, IDC 1.6 cm, 0 nodes, TNBC, lumpectomy, chemo TAC-6, radiation-34 12/18/08
NED-10/09, PBM w/TE recon. 7/10, removal of TE/infec 8/10. CT chest. Rec fat-graft & stem cells


Posted By: 123Donna
Date Posted: Nov 15 2009 at 11:52am
Marla,

Your diagnosis was very similar to mine.  I had clear margins, no nodes, Stage 1 and thought I was in the clear for no chemo.  I can't tell you how devastated I was after I met with the Onc and was told I needed chemo.  The onc said I had TNBC and strongly recommended chemo to reduce the risk of recurrence.  Since TNBC doesn't have any other adjuvant therapy like BC positives, chemo seems the only course of action at this time to try and kill any stray cells that might have escaped.   I looked at it more as an insurance policy since there were no other drugs available.  It's a personal opinion and I'd recommend getting a 2nd or 3rd opinion if it will help make your decision easier.  Wishing you  the best.

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: kirby
Date Posted: Nov 15 2009 at 9:20pm
Marla,
 
I agree with all Donna has said, along with the others assessment. It is not known how much time chemo may or may not give you. TN does sound so scary but I am writing to let you know I was dx 9 years ago. This was before the term TN and all they know now. You'll see by my signature what the standard for tx was then. I didn't find the chemo so hard but it does affect everyone differently. Good luck to you.


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

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: dmwolf
Date Posted: Nov 15 2009 at 10:59pm
Hi, Marla.  Don't panic!  Early TNBC is cured by surgery for most people, and if you add chemo to the mix that brings you Stage I's up to something close to 80% cured.  So don't think of yourself as doomed!  In all likelihood you will be fine.  You are likely NOT just buying yourself a few years. Actually, chemo at this stage will either buy you a cure or do nothing.  We TNs recur most likely recur early if we recur at all, chemo or no.   So bite the bullet and do the chemo, at the very least 'chemo  lite' (TC).  Then you 'minimize regret' should you have a recurrence, and really all it is is a sucky 4 or 5 months.  Yeah, you'll be bald and feel like cr*p some days, but it'll pass before you know it.  Really.  Your hair will grow back, your energy will return.  You will be forever changed, but more by the confrontation with your mortality than anything physical.  The transformation is spiritual.  You will know like you never did before that your days are numbered - that all of ours are, with or without cancer.  You will feel closer to everyone who suffers, anyone caught on the wheel of living and dying, which of course is all of us.  Never again will you turn your head away at a sick person in a wheelchair, close to death, as 'other'.  Rather, you will look and know in the deepest place that it's them today, you tomorrow, and that goes for everybody.  Every healthy body walking down the street.  Me today, you tomorrow.  You today, me tomorrow.   

Anyways, good luck navigating the maze, and take heart!

Love,
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: unklez
Date Posted: Nov 15 2009 at 11:17pm
Dear Denise, nicely said...



-------------
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: hhfheidi
Date Posted: Nov 15 2009 at 11:55pm
No one could have been more upset than myself to learn I needed chemo. I hit the desk so hard with both fists the oncologist jumped three feet out of her chair.

I also dreaded the hair loss. But guess what... people have told me I look the best I have ever looked... and that is without my hair. (I know, it's all in the bone structure).

Nonetheless, chemo was a no brainer for me once I fully understood what I was up against. I have had little to no side-effects thus far (I am halfway through).

My advice? Do the chemo. You can't put a price on time spent with family, and your odds are good. Very good... just like mine.


Posted By: Carol (Tenn)
Date Posted: Nov 16 2009 at 3:36am
Denise,
You do have a way with words. You said everything I would have wanted to say if I could.
Bless You,
Carol


-------------
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13


Posted By: Marla
Date Posted: Nov 19 2009 at 10:40pm
Thank you all for your replies. All of your advice and encouragement helps tremendously. I've decide to go ahead with the chemo (TC 4 times), but I will do the treatments in Florida. Better to have sunshine than grey days. I don't look forward to it and I hate to think of what those toxins might be doing to the rest of my body. I don't believe there has been enough long term research done with this yet. But I guess I was just born in the wrong century. I'll keep pushing through, thanks again for all your kind words.
God bless all of you.
Marla


Posted By: unklez
Date Posted: Nov 19 2009 at 11:02pm
Originally posted by Marla Marla wrote:

Thank you all for your replies. All of your advice and encouragement helps tremendously. I've decide to go ahead with the chemo (TC 4 times), but I will do the treatments in Florida. Better to have sunshine than grey days. I don't look forward to it and I hate to think of what those toxins might be doing to the rest of my body. I don't believe there has been enough long term research done with this yet. But I guess I was just born in the wrong century. I'll keep pushing through, thanks again for all your kind words.
God bless all of you.
Marla

Dear Marla,
You seem at peace with your decision. Florida not Illinois is the place to get chemo during the winter months! TC 4 times should not be very hard. Please read up chemo tips here on this board and ask any and all questions so you can be well prepared for the process, side effects and ways to minimize the side effects.



-------------
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: MaryinSarasota
Date Posted: Nov 20 2009 at 6:22am
Marla,

Thank you for letting us know your decisions.  You have much support already but if there is anything I can help you with let me know. Today it will be sunny and 80. Yes, a good place to be.

Mary


-------------
53 @ Dx 5/08 Stage 1, grade 3, IDC 1.6 cm, 0 nodes, TNBC, lumpectomy, chemo TAC-6, radiation-34 12/18/08
NED-10/09, PBM w/TE recon. 7/10, removal of TE/infec 8/10. CT chest. Rec fat-graft & stem cells


Posted By: Carol (Tenn)
Date Posted: Nov 20 2009 at 7:14am
Marla,
Thank you for letting us know what you decided. Did you look into the possibility of getting Andramyacin with the T and C? Just wondering.
I pray that all will be well soon.
Love and Prayers,
Carol


-------------
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13


Posted By: scared
Date Posted: Nov 20 2009 at 10:51am
I've posted a reply earlier but I want to add another two cents into the ante.  A co-worker's wife has colon cancer stage 4.  She has had it for the last eight years.  I found out about her  cancer when I told him about my wife's breast cancer.

My co-worker's wife is named Lisa.  Lisa has had the cancer go to her bones, into her lungs, to her brain, and now it is back in her colon.  Her eldest daughter just married and another child is expecting their first grandchild next year.  

He believes his wife is hanging on to see that grandchild.  It seems we all need to decide what is important in our lives.  Lisa has had terrible effects of the treatments from all kinds of chemotherapies and radiation treatments but Life is what is important to her..

You need to decide what you are willing to endure to live.  Some will fight tooth and nail to see tommorrow and what treasures it could bring.  I wish you the best in making your decisions.

Dave


-------------
Wife diagnosed 7/08 stage 2B 4.78cm with 3 nodes. 15 weeks of Adriamycin and Cytoxin, Mastectomy, 12 weeks of Taxol, and 6.5 weeks of radiation.


Posted By: lisa k
Date Posted: Nov 21 2009 at 12:03am
I read your post hoping to find an answer to my own question! I just had a lump. Tues 11/17. I have been diagnosed w/ stage 1 invasive dcis and TNBC my path on my lymph came back today neg. my non- invasive part of my cancer measured 0.2 but my invasive portion was the size of a clemetine orange (forgot to ask actual size today - was happy to just hear that margins were clear)! Is chemo the only answer...my surgeon said she could not give me a definite yes or no I must talk to an oncologist to get her opinion... any thoughts?????
 
Thanks,
Lisa
Illinois


Posted By: kirby
Date Posted: Nov 21 2009 at 1:06am
Lisa,
 
Tell us more of the path report or findings. I don't think I followed it correctly. Did you have DCIS in addition to a lump the size of a clementine? Stage 1 is usually 2 cm or less and no node involvement. [ 2cm is about the size of a grape]
 
Glad your margins were clear and sounds like no node invovlvement either.
TN responds well to chemo, so is our main form of ammo seeings that we don't have drugs such as herceptin, armidex, tamoxifan. Those only work with other receptor status.


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

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: SagePatientAdvocates
Date Posted: Nov 21 2009 at 8:28am
Dear Maria,

I am sorry about your dx and hope the chemo goes well for you. I believe you are wise to follow your doctor's advice.

I have a question, though...do you have a family history of cancer on either your mom or dad's side?

If you do I think you should consider speaking to a Certified Genetic Counselor to see if you should be tested for the BRCA mutation. You can find a CGC in your area through this website

www.nsgc.org

If you are near the Tampa area I know Moffitt has several good CGCs.

Perhaps, you have been tested already? I didn't see that in any of your posts or Kim's. 

good luck to you....

all the best,

Steve

p.s. Lisa, has anyone mentioned BRCA to you?


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: trip2
Date Posted: Nov 21 2009 at 1:11pm
Hi Lisa,
 
Here are some links to help you understand more about TNBC.
 
 
 
 
http://www.tnbcfoundation.org/LBBCtriplenegative08.pdf - http://www.tnbcfoundation.org/LBBCtriplenegative08.pdf
 
http://www.curetoday.com/index.cfm/fuseaction/news.showNewsArticle/id/13/news_id/1695 - http://www.curetoday.com/index.cfm/fuseaction/news.showNewsArticle/id/13/news_id/1695
 
http://www.medicalnewstoday.com/articles/157141.php - http://www.medicalnewstoday.com/articles/157141.php
 
http://www.sciencedaily.com/releases/2009/06/090617201804.htm - http://www.sciencedaily.com/releases/2009/06/090617201804.htm
 
Check the TNBC News/Resource section of the forum as there is alot of information for TNBC.


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


Posted By: lisa k
Date Posted: Nov 21 2009 at 2:30pm
I wrote a brief message last night about my cancer let me follow-up w/ more details.


I am a 44 years old and was diagnosed on 10/26/08:
Ductual carcinoma insitu / invasive
Stage 1
Triple Negative
size of cancer = 0.2cm

invasive component grade 2
in-situ component grade 3

My Ki-67 = 5%

I had a wide incision lumpectomy w/ a sential node biopsy on 11/17. My margins came back clear and my sential node biopsy came back clear.

My surgeon cannot determine if chemo will be needed, she said it is a tough call that will be have to be determined by the oncologists.

I have a strong history of breast cancer but the BRCA 1 and BRCA 2 that my mom had performed had the results of NO MUTATION DETECTED. My mom had DCIS in 2007 in her right breast that resulted in a mastectomy and reoccurence in 2009 of tubualr in her left breast that was treated w/ a lumpectomy - mom my is in her mid 60's. My grandmother had a bi-lateral mastectomy  - her first occurence was when she was 47 (her first breast was removed) and then reoccurence 2 years later and her other breast was removed- we do not know what type of breast cancer she had. She passed away in her mid 80's of bone cancer.

I am so unsure of what my treatment will be and I was just wondering what any of you survivors think or would recommend. My worse fear is REOCCURENCE not CHEMO.

Thank you in advance for any help/ suggestions or words of wisdom.

Lisa K.
Illinois


Posted By: trip2
Date Posted: Nov 21 2009 at 2:48pm
Hi Lisa,
 
First of all your ki-67 number is good.  Most of ours are quite high. 
This shows the aggressiveness of our tumor.
 
I will give you some links for TNBC recurrence.
 
http://clincancerres.aacrjournals.org/content/13/15/4429.full - http://clincancerres.aacrjournals.org/content/13/15/4429.full
 
http://www.medicalnewstoday.com/articles/157141.php - http://www.medicalnewstoday.com/articles/157141.php
 
http://jnci.oxfordjournals.org/cgi/content/abstract/djp181v1 - http://jnci.oxfordjournals.org/cgi/content/abstract/djp181v1
 
Mine came back after 4 years but mine was invasive.


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


Posted By: Marla
Date Posted: Nov 21 2009 at 5:27pm
Hi
I'm trying to get my act together to get of town on Monday. Saying good-bye for 4-6 months to my kids and especailly my grandkids is a very difficult emotional rollercoaster. It's hard to say Happy Thanksgiving, Merry Christmas, Happy New Year, Happy Valentine's Day, Happy Birthday and maybe Happy Easter. It just makes me cry. I know they will visit, don't know if it's a good idea to have visitors under the age of 5 in my weaken condition of being able to fight off infection. We will just have to see how I react to the chemo.
 
I'm going wig shopping Monday morning with both of my girls. A couple a freinds said I ought to try being a redhead - been a blond all my life. We will see!
 
Carol - My Onc determined the course of chemo according to the NCCN guidelines. Andramyacin was one of the options. We decided to not use that because I have a history of heart issues in my family history. Father died at age 56 of a heart attack and my brother died the same at age 47.  Andramyacin can sometimes be difficult on your heart.
 
Steve - I have no history of any types of cancers in my family. My Onc said that a BRAC test would be benefical for both of my daughters. And also for me, if I do test positive we may discuss removing my ovaries after treatment as a precautionary measure. Often if TNBC spreads and reoccurs it manifests in the ovaries. Surely at my age I don't need those any more - especally if they could cause problems.
 
Thanks everyone. My treatments won't start until about Dec 15th -so I'll keep looking for your support! God Bless!
 
Marla


Posted By: Marla
Date Posted: Nov 21 2009 at 5:40pm

Lisa

I'm so new to all of this, you likely know more from your Mom and Grandmother. But I have researched and researched - chemo seems to be the only postive choice for TNBC. There is alot of wacky stuff out there, but not recommended by any credible medical source. My surgeon wouldn't make the call for chemo either, it's not their forte. No matter how many times I read and reread my dx it just doesn't change or get any better. They tell us we are "lucky" because we have found it early.
 
So go with your feelings and do what you need to do. I'm very much afraid of chemo, but I don't see any other path at this point. Who knows what might be developed by the time I have reoccurence. That is if this governement allows futher research! There's another "lucky" thing - we got this disease before socialized medicne controls our decisions!
 
Keep reading this site, the information is vast and better than talking to any Doc. But always ask your doctors about what you learn or have questions about.
 
Good Luck, I'll be going through this with you.     - Marla


Posted By: Carol (Tenn)
Date Posted: Nov 21 2009 at 7:19pm
Pam,
What is ki-67? Where do I find that on my test results? That's a new one on me..
 
See new guys.....never to late to learn!!!


-------------
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13


Posted By: trip2
Date Posted: Nov 21 2009 at 7:39pm
Hi Carol,
 
It should be on your copy of your path report.  Hope you have one.
 
http://breastcancer.about.com/od/tumormarkers/f/ki67.htm - http://breastcancer.about.com/od/tumormarkers/f/ki67.htm


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


Posted By: lisa k
Date Posted: Nov 21 2009 at 7:55pm
Pam,
The lower the percent the better...the average percent is 20% according to what my pathologist wrote on my report.
 
Check out yours - good luck,
Lisa


Posted By: Carol (Tenn)
Date Posted: Nov 21 2009 at 8:00pm

I've got the report and I can't find any mention of that test anywhere??? Is it normal procedure?



-------------
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13


Posted By: trip2
Date Posted: Nov 21 2009 at 8:13pm
Carol,
 
It should be on there but possibly not.  Thought it usually is recorded on your initial path report.
 
I know, the higher the more aggressive, mine the second time was around 80 can't remember the first time.
Hey I don't get as much info on my path as many others do, give it another look.
 
If you can't find it ask your Onc next time you go in, he would know.  And tell him you want a copy!


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


Posted By: Carol (Tenn)
Date Posted: Nov 21 2009 at 8:24pm
Pam
 
I looked and looked but nothing...What CEA????
 
I will ask onc about it on my next visit..Dec 8th


-------------
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13


Posted By: trip2
Date Posted: Nov 21 2009 at 8:27pm
Carol,
 
What do you mean "what CEA??"


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


Posted By: Carol (Tenn)
Date Posted: Nov 21 2009 at 8:42pm
Sometimes my brain gets ahead of my fingers...I meant what IS CEA.. but I found it with the link you gave me for KI67.
 
Thank you...can always count on you for help.


-------------
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13


Posted By: unklez
Date Posted: Nov 22 2009 at 12:58am
Dear Carol,

KI67 is the "proliferation index" or the likelihood that the particular cancer cells would spread. My wife's was 70%. We were told that TNBC, higher grade, younger age and KI67 all sort of go hand in hand. It should be on the first biopsy report that shows your tumor's ER/PR status.




-------------
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: Marla
Date Posted: Nov 22 2009 at 1:00am
Hi -
My CEA which is a type of tumor marker report was 0.8 - anything <2.5 is good for a non-smoker or <5.0 is good for a smoker. There is also a a tumor marker report called CA 15-3, mine was 15, you want that to be <32. With those numbers I was hoping for fewer chemo treatments. But my Onc said that those numbers do not indicate micro metatisis. So it's merely a base line. Those two tests are done by blood tests. But I need more information as to want it does mean, not what it doesn't mean.
 
 I'm still wating the report for cell search, another blood test. I should have it Wednesday, but again only a base line. No matter what I'm stuck with this chemo!
 
Marla


Posted By: unklez
Date Posted: Nov 22 2009 at 1:07am
Dear Marla,

Tumor markers in the blood are notoriously unreliable. My wife has not had hers done so far!
Do the chemo, rads or whatever your oncologist recommends now.



-------------
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: Carol (Tenn)
Date Posted: Nov 22 2009 at 6:12am
Unklez,
I looked on the path report from the core biopsy and the surgical path report. Couldn't find anything, unless of course I can't see the forest for the trees. Would you like me scan them and email them?


-------------
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13


Posted By: unklez
Date Posted: Nov 22 2009 at 6:22pm
If you like I can take a look.... send it via PM.



-------------
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: clicrowley
Date Posted: Nov 25 2009 at 8:14pm
Hi,
I am 32yrs. I decided to say no to chemo but yes to radiation. I had my lumpectomy back in 3months ago. My tumor was o.8cm with clear margin and neg lymph nodes.  On Dec 7th I begin
my radiation treatment for 6wks. I understand many people to include some family do not agree, but I feel confident with my decision.
FYI: I have been married for 11yrs and have a 6yrs old girl.
Maybe some day I will feel differently, but for now I am truly happy with  my decision


Posted By: 123Donna
Date Posted: Nov 25 2009 at 9:35pm
Originally posted by clicrowley clicrowley wrote:

I decided to say no to chemo but yes to radiation. . . .
Maybe some day I will feel differently, but for now I am truly happy with  my decision


Welcome to this forum.  The decision for any treatment plan is truly a personal decision after weighing all your options.  You are part of this TNBC community and we will support you along your journey. 

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: trip2
Date Posted: Nov 28 2009 at 11:58am
Hi Clicrowley and welcome,
 
Thanks for sharing your story and absolutely the decision is up to you on what if any treatment you decide upon.
We hope you will keep us updated on how you are doing, we are always here for questions or just to listen.
 
One thing I would like to ask is if you have any familial cancer history?  If so it would be wise for you to speak with a Certified Genetic Counselor to see if you qualify for the brca 1/2 test.  Many TNBC women are brca 1 and  some brca 2.
 
Also these mutations can be passed not only thru your mother but also your father could pass the gene.  Sometimes these mutations can even appear to skip a generation as you will see below.
 
http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA - http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA
 
http://www.facingourrisk.org - http://www.facingourrisk.org
 
http://inthefamily.kartemquin.com/content/brca-101 - http://inthefamily.kartemquin.com/content/brca-101
 
http://cancer.stanford.edu/information/geneticsAndCancer/types/herbocs.html - http://cancer.stanford.edu/information/geneticsAndCancer/types/herbocs.html
 
 


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


Posted By: suzannek
Date Posted: Nov 29 2009 at 5:25pm

Hi Marla

It's been  14 months since I was diagnosed with TNBC and I went through the usual treatment (!6 weeks chemo-4XAC, 4XTaxol)radiation plus 2 surgeries. No it wasn't fun but I'm alive and almost fully recovered. I got to meet a new grandchild this August. It sounds like you have a very loving family that really would miss you if you didn't do what was necessary to be with them.
My oncologist didn't care for the cold cap idea. Very rarely TNBC migrates to the scalp and the cap would prevent those potential cancer cells from being killed. Also though it does preserve some of your hair, you have to be very careful with it as it is fragile. You probably wouldn't have as nice of head of hair as you do now.
I know you are over whelmed right now. Take some time to weigh your options. Lots of us have gone through chemo here and are alive because of it. You very well could get away without doing chemo but you would be worrying even more 'what if it came back'.
I too lost a mother to Alzheimer's. I remember thinking when I got this thing that at least I wouldn't have to worry about Alzheimer's anymore. Death by BC isn't very pleasant (not that this will happen but you do want to avoid it ). Your kids and grandkids want you around. Please consider them.


-------------
Sue Age 56
Stage 2A, no nodes 3 cm, TNBC,Grade 3
Lumps removed 10-07-08, 10-27-08
nodes clean:
Began chemo 12-2-08
4xAC, 4xT dose dense
3 weeks radiation
http://suzannekesten2.blogspot.com/


Posted By: LRM216
Date Posted: Nov 29 2009 at 9:05pm
I agree completely with Sue's above post.  I had the exact same treatment and am just finishing up my last two boosts of radiation (33 treatments, last 5 were boosts).  My oncologist absolutely refused the cold cap idea - so bald I went!  Have about 3/4 of an inch of pure white hair in front and sides, and darker in back - last chemo was 9/10/09.  While it wasn't fun, it was all doable.  I worked full time throughout it all, raise a 14 year old grand-daughter (now, THAT is hard!) am a widow, age 62 and got through it all fine.  Shoot it with every gun you can.  Good luck and God bless.
 
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: Nov 29 2009 at 10:58pm
Dear all,

My wife did not use the cold cap but I have a hard time believing that cold caps would somehow reduce the efficacy of chemo. Consider that brain, not scalp, is a possible mets site. Most chemos for early BC, such as AC==>T, do NOT cross the blood brain barrier.

Doctors in US just do not want even the remote possibility that something would interfere with the treatment they are able to offer. I feel that this has more to do with the fear of being sued than anything based on solid belief.



-------------
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: Nov 29 2009 at 11:21pm
They say chemo is not supposed to cross the blood barrier however I did a term paper on chemo brain and after reading many studies, some have concluded there is definite brain activity [ or lack of] even if they cannot figure how it is happening. I do not remember detail but can look up my paper for verification on studies. They have found thru imaging, changes in the brain. Now for those concerned over chemo brain, what it generally showed was those with chemo brain, eventually came to the same conclusions, it just took the brain much longer to work. awareness of chemo brain has been around since the 70's but real studies were not started until this century. So basically the last 10 years or less. New imaging technique has been able to substantiate findings.
 
I did the paper 2 years ago, so the information is off the top of my head. I can look it up somewhere on my computer if needed. [ for those that don't know, i am not that adept, otherwise I would do it now for you.]


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

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: unklez
Date Posted: Nov 30 2009 at 12:05am
Dear Kirby,

Thanks for the info on your term paper. This sounds very interesting and I'm definitely curious to know more. Please send me a copy by PM if you can.



-------------
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: Carol (Tenn)
Date Posted: Nov 30 2009 at 1:00am
First, let's address mets to skull. I had a craniotomy because one of the top neuro-oncologists at Vanderbuilt Medical Center was 95% sure I had mets to my skull. Thankfully, he was wrong. So breast cancer can met to the skull. Now I'm not commenting on cold caps just about skull mets.
 
Second, I can attest to chemo brain. I always considered myself as being fairly intelligent and articulate but since chemo it seems I can't get two sentences together at the same time. I can be in the middle of a thought and it just leaves me. I feel like an idiot and for those who aren't familiar with chemo brain think I'm nuts when I mention it.
Some would say that I'm just getting old. I would never, never admit to that....LOL..


-------------
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13


Posted By: trip2
Date Posted: Nov 30 2009 at 5:07pm
Hello,
 

Chemobrain happens for sure.
 
http://www.cancer.org/docroot/MBC/content/MBC_2_3x_Chemobrain.asp - http://www.cancer.org/docroot/MBC/content/MBC_2_3x_Chemobrain.asp
 
http://www.sciencedaily.com/releases/2006/10/061006072544.htm - http://www.sciencedaily.com/releases/2006/10/061006072544.htm
 
 


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


Posted By: suzannek
Date Posted: Dec 01 2009 at 8:54am

I am addressing Unklez's statement that doctors don't want to recommend anything that might interfere with treatments to avoid lawsuits. Well also they might just want to try to save your life. But I agree that scalp mets are very rare compared to brain mets.  ACT does not cross the blood brain barrier but it can interfere with the brain's functioning indirectly by stopping the synthesis of key neurotransmitters for example (speculation). I am involved in a chemobrain study that measured how I performed tasks while under a fMRI before chemo, during chemo, and a year after I started chemo. I agreed to do this only if they shared with me my individual results-still not finished.

But I agree that there are some statements that doctors make that are more based on avoiding culpability than scientific fact such as : You had that tumor for years so it doesn't matter if we take a month or so to deal with it. Well in that month, I went from Stage 1 to Stage 2 doubling my chances of distal mets. Many on this board have had the same experience but I think the physcians are trained to say by their lawyers-'Oh that's impossible' despite evidence by their own labs. 'The ultrasound measurements must have been wrong.'
 
As for medications interfering with treatment, recently it came out that many antidepressants make Tamoxifen useless. Not pertinent here to us with TNBC but is very important to our ER+ sisters. Less clear is taking heavy doses of antioxidants while in treatment possibly blocking the oxidative damage to cancer cells.


-------------
Sue Age 56
Stage 2A, no nodes 3 cm, TNBC,Grade 3
Lumps removed 10-07-08, 10-27-08
nodes clean:
Began chemo 12-2-08
4xAC, 4xT dose dense
3 weeks radiation
http://suzannekesten2.blogspot.com/


Posted By: LRM216
Date Posted: Dec 01 2009 at 9:33am

My philosophy has been that if my oncologist, who is highly regarded by her fellow doctors, has an extensive and broad knowledge of how she is treating me, is as up to date on triple neg as she is ER/PR+, and feels that I should not be doing something, such as a cold cap, then I just don't question her - her reasoning is good enough for me.  I personally do not see why those that want to use the cold cap are so dedicated in their pursuit of it, as I figure, if I am going to lose "some" of my hair, or suffer patchy loss, then I may as well just lose it all and wait until it grows back.  I just don't see where there is any real advantage to using it.  It's not like it guarantees no hair loss whatsoever.  I have yet to meet anyone that still had a full head of hair after trying it (must admit, however, I only know of 3 gals). 

I do wish those that are using it, or plan to, full success and satisfaction in the results.
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: Dec 01 2009 at 10:54am
Suzanne,
Good point. I had not considered the possible indirect effect of chemo in preventing brain mets and how cold caps might inhibit that action.




-------------
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: Marla
Date Posted: Dec 27 2009 at 10:05pm
Hi I have been away for a while waiting to begin chemo in FL. I'm scheduled to begin Jan 6th. Now my quess is about the port. I'm only supposed to get 4 chemo treatments. I' really against having a port put in. Does anyone have any advice or comments?
Marla


Posted By: krisa
Date Posted: Dec 27 2009 at 10:37pm
if it were me, no port.  i had 8 infusions and had no port--my breast surgeon talked me out of having a port.
if i was to have on going chemo, though, then i would have a port.
anyway, this is my opinion.
Smile


Posted By: 123Donna
Date Posted: Dec 27 2009 at 10:44pm
Marla,

I had 4 treatments with no port. 

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: Carol (Tenn)
Date Posted: Dec 27 2009 at 10:44pm
I guess your veins is what will determine that. If you have trouble getting blood tests or IV's like I do the port saved me....I have roly poly small veins...takes 5 or 6 tries to hit a good one. But if you have good veins there's no reason why you should have one if you don't want one. I took treatments with a few that chose not to port...they did fine...

-------------
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13


Posted By: beanadvocate
Date Posted: Dec 27 2009 at 10:46pm
Kim,
I am new to this site and see that I am a few months into your mom's point of decision. I hope that she looked into another opinion from a doctor who has treated this condition successfully previously and that she understands all the options, w and w/o chemo trt. I was dx'd almost 11 yrs ago when this didn't even have a name and no treatment recommended besides lumpectomy and radiation. I had a second cancer in my opposite breast 2 years later. This is my experience, not your mother's. I am also BRCA1 positive so that makes my odds the highest possible here on earth! I am currently doing well, follow-up is thru a series of research studies and I watch with great hope as a small study of those who have recurred use PARP inhibitors for their treatment. having watched too many young friends go thru treatment for mets, I know how it is to sit on the sidelines and encourage when the patient is defeated.
Keep asking questions, don't take no for an answer and find the answers you seek.There is a researcher or professional somewhere who hears what you ask and can respond.
I wish only the best to you and your familyClap


Posted By: Kellyless
Date Posted: Dec 27 2009 at 11:52pm
My port was a rockstar, I'm very grateful I had 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: unklez
Date Posted: Dec 28 2009 at 12:38am
Dear Marla,
4 infusions are hardly a good reason to put in a port. Here is why: just for putting in the port and removing it, they will need to poke your veins so you'd be saving just 2 pokes! Ask whether the particular chemo you'd be getting would harm the specific vein they use. If so maybe maybe consider port or a PICC line but not otherwise.



-------------
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: Dec 28 2009 at 7:25pm
I did not have a port. I too only had 4 tx. which was protocol du jour, 2001. I can't stand needles and have rolling veins but had fabulous nurses. I did get to where I would tell a new person taking a draw that I only wanted to be "stuck" once and was difficult [ all said with a smile] and if they were not the one for the job....I'd wait !!!!

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

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: pamurph
Date Posted: Dec 28 2009 at 9:02pm
I struggled too with the chemo question. I am 57, found out 3 weeks from my last day at work after 25 years (laid off). The thought of looking for work during chemo was overwhelming to me. I had one tumor 1.5 cm, clear nodes, clear margins. I got a second opinion, and have decided to do chemo. Tomorrow I have the port put in and start chemo on Monday. I am really scared and concerned about the side effects, but felt that this was something I need to do.    My oncologist kept saying that it was my decision to make. I think that made it easier for me to make the decision myself and not feel pressured to do it. Good luck making your decision and with what treatment you decide on.

-------------
Dec 2009
IDC 1.6 Stage 1 Grade 3 Lt Lumpectomy, mammosite radiation completed; 6 Taxotere/Cytoxan treatments-1-4 2010. Port out 6/3. Rt breast LCIS dx 8-2010. Bil Mx 9/2/2010 w/ reconstruction


Posted By: 123Donna
Date Posted: Dec 28 2009 at 9:22pm
Originally posted by pamurph pamurph wrote:

Tomorrow I have the port put in and start chemo on Monday. I am really scared and concerned about the side effects, but felt that this was something I need to do.


Wishing that all goes well with your port placement.  What type of chemo will you be getting and how many treatments?




-------------
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: Carol (Tenn)
Date Posted: Dec 28 2009 at 9:49pm
Welcome Peggy,
 
It's good to have you here. You will find a lot of caring intelligent people on this site. If you have questions there is sure to be someone here that has been through it or can find info for you.
If it's spiritual support you might need, we have that too. Just jump to Support Groups, then Spiritual Support.
Hope your chemo goes well, I will be praying for you.
Love and Prayers,
Carol


-------------
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13


Posted By: pamurph
Date Posted: Dec 28 2009 at 9:58pm
I will have 6 txs, 3 weeks apart of Taxotere, Adriamycin, and Cytoxan. Why 6 treatments when I see many that have 4 I don't know. That is on my list to ask again. May have asked before, but I don't remember the answer. Also to have my vitamin D level checked. On the bright side, I have already bought a really cute wig, hoping that will make the hair loss a little easier. I do appreciate all the prayers and good thoughts I have been getting from everyone!

-------------
Dec 2009
IDC 1.6 Stage 1 Grade 3 Lt Lumpectomy, mammosite radiation completed; 6 Taxotere/Cytoxan treatments-1-4 2010. Port out 6/3. Rt breast LCIS dx 8-2010. Bil Mx 9/2/2010 w/ reconstruction


Posted By: 123Donna
Date Posted: Dec 28 2009 at 10:04pm
Peggy,

It's good that you have your wig and ready to go!  My hair started falling out around the 15th day after my first chemo. 


-------------
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: unklez
Date Posted: Dec 28 2009 at 10:13pm
Dear Peggy,

Have you taken a second opinion from a medical oncologist at a teaching hospital like MD Anderson?

You may want to ask your oncologist why they recommend this regimen over a variant which is very popular and more modern. That regimen consists of Adriamycin and Cytoxan once every 2 weeks for 4 times followed by Taxol once every 2 weeks for 4 times. It is called dose dense AC-->T. It is easier to take, side effects are less severe, completes 2 weeks quicker and is considered as much, if not more, effective than the TAC regimen your oncologist has suggested. I am sure he/she has good reasons to suggest TAC but it never hurts to double check.
 


-------------
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: pamurph
Date Posted: Dec 28 2009 at 10:19pm
I did go to MD Anderson. The MD there said that there wasn't any evidence that one is that much different than the other. (some wording close to that). So I decided to go with the tx near my home. But I do plan to talk again with him about it. He is very willing to answer all of my questions, as he should be!

-------------
Dec 2009
IDC 1.6 Stage 1 Grade 3 Lt Lumpectomy, mammosite radiation completed; 6 Taxotere/Cytoxan treatments-1-4 2010. Port out 6/3. Rt breast LCIS dx 8-2010. Bil Mx 9/2/2010 w/ reconstruction


Posted By: dmwolf
Date Posted: Dec 28 2009 at 11:04pm
Peggy, I second unclez.  TAC is supposed to be very, very hard, and not more effective than the less toxic protocol of AC followed by T (or the other way around).  Many oncologists don't even do TAC anymore because of this, and this includes some of the best breast cancer specialists in the world at UCSF.   You should still be able to do the treatment near your home and have the more bearable protocol.  There's no reason why not.  In fact, with you being stage I, you could even do TC only, which some studies have shown to do as well or better than AC alone and many consider appropriate for stage 1.  Did you discuss this possibility with anyone? 

Remember, you have to balance your desire to treat aggressively with your good prognosis and the possibility of a miserable 6 months and even worse permanent and/or long range damage to your body from chemo.

-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: Carol (Tenn)
Date Posted: Dec 29 2009 at 12:41am

Such good advice Peggy.....I know it's hard to hear others challenge your tx but at the same time they know so much about this....as you can see I did the AC..T...I did fairly well and some did better than me...

Denise and Unklez have done so much research on this. I trust their opinion. It's better to ask. Why suffer if you don't have to.
Denise do you or Unklez have the website that lists protocols according to their effectiveness with TNBC??
I know I've read it but don't know where.
Thanks
Love and Prayers,
Carol


-------------
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13


Posted By: 123Donna
Date Posted: Dec 29 2009 at 12:45am
Peggy,

I agree with Denise.  Could you ask your onc about maybe getting TC instead of TAC?  If you're Stage 1, with no nodal involvement, TC may be an easier combo without the side effects or possible damage from the "A".  

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: lhwoodley
Date Posted: Dec 29 2009 at 1:10am

I was diagnosed with breast cancer that was triple negative on October 1; had a lumpectomy on October 16 and started the first of 6 rounds of TC on November 23.  I am in a clinical trial that compares TC with TAC and TCA.  It look like TC is a lot better (if any chemo can be better).  I have not had any nausea or vomiting, just a lot of fatigue and lost of taste.  Now my nails are changing colors and has was gone after day 18.  That has been the hardest part.  I feel alone in this as i don't know anyone personally that has undergone what i am going through.  My husband is very supportive, but I still feel very much alone.



Posted By: scared
Date Posted: Dec 29 2009 at 1:31am
I am so sorry that you belong to this club, but you found this site and there is a lot of members that can offer you advice on each phase of your treatment.  My wife had breast cancer and she went through the months of treatment battling each day as it came.  There are times you will feel alone, and as a husband to a wife that had breast cancer you will feel all alone.  I remember once my wife said to me, "I am the one with breast cancer, not you!"

It hurt me to my soul but her words were true, you have it and not your husband.  You are dealing with the real fears of cancer, and even though as husbands we love you so much it is not us that have the disease.  So, my advice to you is to seek help.

We used two psychologists one was a cancer survivor herself, and my wife has begun taking writing classes.  It helps to write in a journal your feelings.  There are support groups that you can go and just listen in on.  You don't have to say anything if you do not want to.  My wife was a more private person and did not use the support groups.  What did happen was at our daily radiation treatments we became friends with those that were in our time slot and she started to talk about her cancer and I could tell it helped her.

Somehow you need to get those feelings you have out, either on paper or with other people.  This is also a great place to go for friendship, and I offer you mine.

Dave


-------------
Wife diagnosed 7/08 stage 2B 4.78cm with 3 nodes. 15 weeks of Adriamycin and Cytoxin, Mastectomy, 12 weeks of Taxol, and 6.5 weeks of radiation.


Posted By: 123Donna
Date Posted: Dec 29 2009 at 1:32am
Dear lhwoodley,

Welcome to this forum and sorry you had to find us.  You'll find so many supportive people on this site to help you through your journey and let you know you are not alone.  We are here to help.  Please ask questions, vent or just tell us how you're feeling.  This is a great site for those of us dealing with TNBC.

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: scared
Date Posted: Dec 29 2009 at 1:32am
I am so sorry, I was responding to the post ahead of mine, but I support you too.  Sorry Peggy.

-------------
Wife diagnosed 7/08 stage 2B 4.78cm with 3 nodes. 15 weeks of Adriamycin and Cytoxin, Mastectomy, 12 weeks of Taxol, and 6.5 weeks of radiation.


Posted By: maryjahn
Date Posted: Dec 29 2009 at 2:00am
Hello Parmuf,
 
 
I too have been recently diagnosed, though my path is a bit different.  The surgeon was unable to due surgery yet and I found out after many tests that I had to do chemo first.  I am being treated at UCLA in Westwood for chemo and City of Hope for surgery and both are state of the art with triple negative bc.   I agree with the other women that having to do the A is really rough, unnecessary and is rarely used anymore. My regular dr. went so far as to say A does nothing for breast cancer.  I am on my second round of TC and though a bit rough on my stomach not nearly as bad as when you add the A.  So far my lumps have shrunk quite a bit and the hope is that with only 4 x they will shrink enough to do surgery.  If not, I go 4 more x in 3 week intervals.  I lost all of my hair on about the 15th day--I first cut it to about 2" all over then finally had to shave it but it was less traumatic in stages.  I too bought a cute wig and most people don't even know I am wearing one.
 
Best of luck to you--ask questions and don't be afraid to get a second opinion.
 
Mjahn
 
 


Posted By: trip2
Date Posted: Dec 30 2009 at 10:56am
http://www.breastcancer.org/treatment/chemotherapy/new_research/20071213b.jsp - http://www.breastcancer.org/treatment/chemotherapy/new_research/20071213b.jsp
 
 
The above is a link suggesting Adriamycin only works for 8% of breast cancers and that TC is much better with a 31% better survival over women who also had AC.


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


Posted By: maryjahn
Date Posted: Dec 30 2009 at 11:18am
Thanks for this Pam--I am shocked at how many women are still having the standard ACT for treatment.
 
Mary


Posted By: susie72404
Date Posted: Dec 30 2009 at 11:24am
I am sorry to read these statistics about AC:breastcancer.org/treatment/chemotherapy/new_research/20071213b.jsp


The above is a link suggesting Adriamycin only works for 8% of breast cancers and that TC is much better with a 31% better survival over women who also had AC.

This was my treatment from a teaching ,leading cancer center. Sure makes me nervous!!


-------------
Susie Age 56 at DX
dx10/08,stage1,grade3
lumpectomy,.75cm. tumor,SNneg.,
12/08 began 4xAC,03/09-05/09 35rads
BRCA2+ June 2009
oophorectomy10/6/09,bilateral prophylatic mastectomy June 2010


Posted By: suzannek
Date Posted: Dec 30 2009 at 11:35am
When my chemo was being planned last year, I discussed this paper with my oncologist. This paper  suggests that Adriamycin is mainly effective against her2 positive cancers but does not do much for you if you are her2 neg. She was well aware of this research and admitted that Adriamycin's use for triple negs was contraversial but thought it was too big of a gamble not to use it. It seems very clear that some sort of taxane should be used and some oncologists think the platins might be best for triple neg. This study cited here doesn't discuss the difference between survival between the ER+ and the ER- women. I've read that in general Adriamycin isn't too useful for er+ (unless they are her2+ also) but it is unclear whether it is useful for triple negs. Since we don't have many options, I went with the AC followed by T. I hope I took it for a good reason.

-------------
Sue Age 56
Stage 2A, no nodes 3 cm, TNBC,Grade 3
Lumps removed 10-07-08, 10-27-08
nodes clean:
Began chemo 12-2-08
4xAC, 4xT dose dense
3 weeks radiation
http://suzannekesten2.blogspot.com/


Posted By: unklez
Date Posted: Dec 30 2009 at 11:41am
Dear Susie,
 
I understand your nervousness but please know that you got the best treatment available at the time. Just to share my experience: My wife and I visited 4 medical oncologists when finalizing her treatment. We also sent emails to UPenn's leading oncologists. Every one of them said something along the lines of: "There is no compelling evidence that Adriamycin should be omitted for TNBC. The '8%' benefit is not supported by many studies. You wife needs 3 chemo medicines and Adriamycin should be one of them". I was also hoping we could sign her up for TC alone but not one of the oncologists agreed with that approach.
 
Last but not the least, I think the 31% for Taxol is a relative improvement figure and the 8% is an absolute figure. We should compare apples to apples.
 


-------------
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: Dec 30 2009 at 12:04pm
Here is a link regarding Platinum-based chemo for TNBC,
 
http://annonc.oxfordjournals.org/cgi/content/abstract/19/11/1847 - http://annonc.oxfordjournals.org/cgi/content/abstract/19/11/1847


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


Posted By: unklez
Date Posted: Dec 30 2009 at 12:15pm
Thanks Pam. The article states that the platinum drugs are promising in advanced TNBC cases but not in early TNBC cases nor in other types of BC. Not sure if the follow up trials suggested as a follow up step have been set in motion.


-------------
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: Dec 30 2009 at 12:50pm
My chemo was completed on 9/10/09.  I am node negative and was given the AC&T.  This was discussed fully with my oncologist at the beginning of my chemo as to what the best choice for me would be.  She suggested T&C, AC&T or TAC.  Since I am 62, a widow, work full time and raise a 14 year old grand-daughter, she felt the T&C would not be the most agressive way to go, and that either of the AC&T or TAC would be the best course possible.  I feel totally confident in what she described to me and I chose the AC&T.  My onc  is highly esteemed and regarded by other oncologists in our area as one of the best and has been with The Winship Cancer Center at Emory University, has been awarded many citations along the way, both here in the USA as well as many parts of Europe.  She has had in the past as well as the present many triple negative breast cancer patients and is up on everything, including being a part of all new clinical investigational treatments.  She still feels that this is the best plan of treatment for triple negs - node positive and/or node negative. 
 
While many things are on the horizon for us, with the platinums and other forms of chemo - as she said, unfortunately, they have not yet been proven to be successful in the early cases, but instead have shown great promise for advanced cases at the present time. 
 
Although my diagnose was Stage 1 with no nodes - I agreed with her that I wanted to go as agressive as I could as you only get one shot at killing this beast.  I chose AC&T and feel very confident in my choice, as does my onc.    All others that have chosen the same should feel so as well.
 
To the poster that is shocked that so many people are still receiving AC&T today, perhaps she should do a lot more research, as they most certainly are, and from some of the most esteemed onc in the country.
 
The best of luck to all of us, no matter what therapies we have chosen.  Long may we all live!


-------------
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: Kellyless
Date Posted: Dec 30 2009 at 1:28pm
My onc said the same thing as LRM216 & Unklez, I too was full of frightened dread at the thought of the A, asked why I couldn't do the T&C that my neighbor was doing (er+,pr+), she explained that she would not recommend that due to my triple neg, grade 3 and lymph involvement - as well as my relative young age of 45 & overall good health.  She felt I upped my risks considerably leaving out the A - and I'm in it to win it, I accepted it and never looked back.  She said, "I've had several women triple neg that have insisted and regretted due to recurrance, not doing the A up front.  I've never had a woman regret adding in the Adriamycin afterwards."  Yipes, no regrets for me.

-------------
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: susie72404
Date Posted: Dec 30 2009 at 1:42pm
Thank you Unklez,
You know it is just too late now to change the course , so I can not stress about this. I'm not in control anyway!!I just did not have the info on adding Taxol to AC for treatment, an honestly, I had not researched any at the time.I did not know the statistics on this study either. It never occured to me to question the onc. recommendations.. Soooo, I was "only" Stage 1 and "only" took AC.

If there is a recurrence, what is the protocol then? I guess that depends on where it is, what it is, etc. Just wondered. Susie

-------------
Susie Age 56 at DX
dx10/08,stage1,grade3
lumpectomy,.75cm. tumor,SNneg.,
12/08 began 4xAC,03/09-05/09 35rads
BRCA2+ June 2009
oophorectomy10/6/09,bilateral prophylatic mastectomy June 2010


Posted By: unklez
Date Posted: Dec 30 2009 at 2:31pm
Dear Susie,
Recurrences are more individualized than early stage disease. Like you said, with recurrences, a lot depends on what it is, where it is, etc.
 


-------------
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: maryjahn
Date Posted: Dec 30 2009 at 2:55pm
I have great respect for the women who have come before me and who have received ACT in the past and who are now living well and cancer free.  There are so many factors and variables for each person, no one else can make that choice for them.
 
For myself, from what I understand from my onc, research done regarding ACT vs TC in early stages with no lymph node involvement, TC has had superior results and ACT is unnecessary.  But this is was told to me in regards to my case and with my onc.  I am having great results.  I have also chose to completely change my diet, my lifestyle, my entire life--to me cancer is a wake up call to live better and healthier. 
 
My best to all those who have come before, who are now having treatment and to those who are about to go on this journey.
 
Mary 


Posted By: trip2
Date Posted: Dec 30 2009 at 3:08pm
I deeply apologize if I offended anyone.  There is information out there and it can all become confusing because to me "they" seem confused.
Of course the decision on what type of treatment one does is between the patient and the doctor.
 
Here is another link Susie, Dr. Lisa Carey discussing TNBC treatment.
http://www.tnbcfoundation.org/LBBCtriplenegative08.pdf - http://www.tnbcfoundation.org/LBBCtriplenegative08.pdf
 
Here is another link discussing neo-adjuvant,
http://www.allbusiness.com/pharmaceuticals-biotechnology/pharmaceutical/12705125-1.html - http://www.allbusiness.com/pharmaceuticals-biotechnology/pharmaceutical/12705125-1.html
 
 
http://www.cancernetwork.com/display/article/10165/1340727?verify=0 - http://www.cancernetwork.com/display/article/10165/1340727?verify=0
The above is another good one to read.
 
We now have studies, articles, opinions, etc., out there, they are trying to sort this all out which wasn't the case not too long ago.
 
I too had AC&T, the second time I asked what chemotherapy they recommended and they said Taxotere.  At that time I had been researching so felt that was ok by me.


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


Posted By: 123Donna
Date Posted: Dec 30 2009 at 8:47pm
Pam,

No offense at all.  We all have to trust the decision we make in combination with our onc about the best treatment for our particular case.  I don't think there is one right or wrong choice.  It's like trying to look in the magic mirror and know which chemo to use.  If we had the capability to test the tumor prior to treatment and know which chemo would work best, then we'd have an absolute answer.  Today, most of us have the tumor removed and then chemo so we're just hoping the tx will kill any stray cells.  The only way we know if it worked is if there is no recurrence.

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: Maire
Date Posted: Dec 31 2009 at 8:16pm
Hi,
 
You seem to know alot about chemotherapy. I have stage 1C triple negative breast cancer. I had a lumpectomy but the margins were not wide enough so I am going to have a mastectomy. The first oncologist I saw recommended TC chemo 4 cycles 21 days apart. I saw a second oncologist today who recommended Taxane and 5FU every week and the Cytoxan every 3 weeks so now I'm not sure whose advice to follow. The doctor today said that studies have shown that Taxane every week is more effective than every three weeks but I haven't been able to find anything about that. I was wondering if you know anything about that?


Posted By: Donna Z
Date Posted: Dec 31 2009 at 10:27pm
Maire below is the study I found that MDAnderson bases their treatment schedule on. However I do believe the jury is till out on dosage scheduling re weekly or 3 weekly, dose dense etc. Hope this helps. Donna

http://professional.cancerconsultants.com/oncology_main_news.aspx - Cancer News :  http://professional.cancerconsultants.com/oncology_breast_cancer_news.aspx - Breast Cancer : Article  http://professional.cancerconsultants.com/print.aspx?id=34943 - Printable Version  


Breast Cancer News

Weekly TaxolŽ Improves Outcomes in Breast Cancer Compared to Every-Three-Week Dosing

Researchers from M.D. Anderson Cancer Center have reported that weekly Taxol (paclitaxel) given prior to surgery for localized breast cancer resulted in more pathological complete responses than in patients receiving Taxol every three weeks. The details of this randomized trial were published in the September 1, 2005, issue of the Journal of Clinical Oncology . http://professional.cancerconsultants.com/oncology_breast_cancer_news.aspx?id=34943#_edn1 - [1]    

There has been controversy over the best way to administer paclitaxel in women with breast cancer.   A previous study had suggested that Taxol was more effective in women with metastatic breast cancer if administered weekly rather than every three weeks. http://professional.cancerconsultants.com/oncology_breast_cancer_news.aspx?id=34943#_edn2 - [2]    The authors of this trial suggested that weekly Taxol with or without HerceptinŽ (trastuzumab) should be adopted as a new standard dosing regime for patients with metastatic breast cancer.

The current trial randomly allocated 258 patients with stages I-IIIA breast cancer to receive Taxol weekly or every three weeks before surgery. This was followed by four cycles of FAC (5-FU, doxorubicin and cyclophosphamide). Of these patients, 110 patients had cancer spread to the axillary lymph nodes. Following all chemotherapy, patients underwent surgery and the primary endpoint of the study was pathologic complete remissions.

Clinical responses were the same in both groups. More patients treated with weekly Taxol experienced a pathologic complete response in the breast and lymph nodes. Nearly 30% of patients who were treated with Taxol every week had a pathologic complete response compared to 15.7% of patients who were treated with Taxol every three weeks. In addition, more patients in the group treated with weekly Taxol were able to undergo breast-conservation surgery versus a mastectomy.

These researchers concluded that Taxol administered weekly provides greater eradication of cancer cells from the breast and axillary lymph nodes compared to Taxol administered every three weeks and allows for greater rates of breast-conserving surgery in patients with stages I-IIIA breast cancer. These authors added that although eradication of cancer cells prior to surgery has historically resulted in superior outcomes, future trials directly comparing the different schedules of Taxol are necessary to determine the true effectiveness of more frequent administration of Taxol.

Comments: These data support the findings reported in women with metastatic breast cancer. Thus, more frequent dosing of Taxol should be the norm in localized breast cancer as well as in metastatic breast cancer.

References


http://professional.cancerconsultants.com/oncology_breast_cancer_news.aspx?id=34943#_ednref1 - [1]  Green M, Buzdar A, Smith T, et al. Weekly paclitaxel improves pathologic complete remission in operable breast cancer when compared with paclitaxel once every three weeks. Journal of Clinical Oncology. 2005; 23: 5983-5992.

http://professional.cancerconsultants.com/oncology_breast_cancer_news.aspx?id=34943#_ednref2 - [2]  Seidman D, Berry C, Cirrincione C, et al. CALGB 9840: phase III study of weekly (W) paclitaxel (P) via 1-hour (h) infusion versus standard (s) 3h infusion every third week in the treatment of metastatic breast cancer (MBC), with trastuzumab (T) for HER2 positive MBC and randomized for T in HER2 normal MBC. Proceedings from the 40th Annual Meeting of the American Society of Clinical Oncology. New Orleans, La. 2004; Abstract #512.



-------------
Dx 03/09 TN, Stg 2a, gr 3, 1.7 cm Taxol X 12, FAC X 4, segmental mastec Sept 10/09,
1 pos/29, from Canada, Treatment MDAnderson, rads X 30 started Oct 29/09. Zometa start Nov 24/09


Posted By: susie72404
Date Posted: Jan 01 2010 at 7:51am
Thank you Pam, that was very informative! Does anyone know of where I would find info on recurrence statistics?
Happy New Year to all!!

-------------
Susie Age 56 at DX
dx10/08,stage1,grade3
lumpectomy,.75cm. tumor,SNneg.,
12/08 began 4xAC,03/09-05/09 35rads
BRCA2+ June 2009
oophorectomy10/6/09,bilateral prophylatic mastectomy June 2010


Posted By: trip2
Date Posted: Jan 01 2010 at 11:30am
Hello Maire and welcome to our forum.
 
I'm so sorry you have a need to be here but we do the best we can to support you thru your treatments.
 
Donna is right, many of us have chemo every 3 wks, two wks, different Oncologist's have their preferences.
 
Here is an article re dose dense for TNBC,
http://professional.cancerconsultants.com/news.aspx?id=35736 - http://professional.cancerconsultants.com/news.aspx?id=35736
 
If you are getting your chemo  more frequently than say every 3 weeks as many of us have had in the past then they say the side effects  are not possibly as harsh.  It's easier on you.
 
Have you considered seeing a Certified Genetic Counselor to see if you have a Brca 1/2 mutation?
Many Brca 1 women have TNBC.
 
Let us know what you decide.  Do your research and the ultimate decision is between you and your doctor.
 
Best wishes,


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



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