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Grateful for today View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jan 17 2012 at 2:53pm
Lee,

Thank you for letting us know your decision and the result of the U of M medical oncology visit.
Can almost hear the sigh of relief with your treatment decision made.
Glad that you can put that behind you now.

Before I started my chemo, I keep repeating what the nurse who worked with my oncologist said:
(re: chemo) All side effects are possibilities not probabilities.   
From the forums, you have probably seen those who practically sailed thru chemo and those who
just needed to adjust their post chemo medication plan to help the experience.
It's a little early.....but will start the positive hopes and thoughts for a chemo course with the
minimal side effects or none.   I had DD AC-T and was very fortunate....... I came up with a new
word.....pre-queasy and took the PRN meds as needed........did not have any nausea/vomiting
and did not have pre-nausea!

With positive and caring thoughts for your procedure on Thursday,

Grateful for today..............Judy

-----------------------

Wade,
     That reference you posted yesterday is terrific........so much info and so many references.
                                                                                                                    Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jan 18 2012 at 9:24pm
Lee,

Sending lots of caring thoughts to you for Thursday's sentinel node biopsy.

Grateful for today.............Judy

p.s. You mentioned on another forum that "After my SLNB I will call the social work department to see if they will help." Good plan. Here's hoping they will have some resources/help with the cost of wig.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2012 at 11:19am
Hi everyone,
Just want to update what's been going on.
I had my SLNB last Thursday, 2 nodes, including a sentinel node, were removed and they were negative.
I had my first wig appointment yesterday and ordered one.  I signed up for the LGFB workshop.
I am starting chem on 1/30. Meantime I am trying to catch up on all the chemo tips and great questions that abound on this forum.

BTW, at my cancer center they only do fixation and H&E of the lymph nodes, no IHC or molecular markers to look for isolated tumor cells. Did anyone else have a different experience?

This is what I have been able to find out about lymph node staging (I am not sure what the IHC is looking for in terms of markers):

pN0 - no regional LN mets histologically, no additional examination for isolated tumor cells
pN0(i-) no regional LN mets histologically, negative IHC
pNO(i+) no regional LN mets histologically, positive IHC, no IHC cluster greater than 0.2 mm
pN0(mol-) no regional LN mets histologically, negative molecular findings (RT-PCR)
pN0(mol+) no regional LN mets histologically, positive molecular findings (RT-PCR)
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2012 at 11:20am
One more thing, I am not going to get a port unless the infusion nurses have difficulties with my veins.  That's how to do things here.  I wasn't really given a choice.
Is this a local thing?  Were you given a choice for port or IV?
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2012 at 12:36pm
Originally posted by Lee21 Lee21 wrote:

One more thing, I am not going to get a port unless the infusion nurses have difficulties with my veins.  That's how to do things here.  I wasn't really given a choice.
Is this a local thing?  Were you given a choice for port or IV?

Lee, 

Perhaps that is a local thing?- not sure. My port was put in at the same time as my mastectomy by the same surgeon although i know it is not always done that way. I think ports are highly suggested to help save the veins. I know my oncologist and her nurse said they do not use the veins unless really necessary for some reason. My chemo started each week when on Taxol with about 4 smaller bags of premeds (benedryl, something for my stomach such as Tagamet (sp), a steroid)... then the bigger IV bag was started. In addition to the blood work done before they would administer the chemo. That's a lot of fluids to go through the arm plus the scar tissue that can develop with repeated blood work etc. So, I wasn't given too much choice either but the opposite of what you were given. 


Blair


Edited by cheeks - Jan 25 2012 at 12:38pm
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2012 at 12:37pm
Lee,

This is just my personal experience.  The first time I only had 4 treatments so they never even talked about a port.  After the 3rd infusion, I had leakage from the premeds causing burns to my vein and skin.  The last infusion they had to use my arm as there just wasn't any good veins in the hand anymore.

With my recurrence, we knew I'd have many infusions (some twice a week) so a port was ordered.  After having it, I can say it makes the infusion so much easier.  My onc said there is some discussion about having a port for women needing only 4 treatments.  I think the jury is still out on this and probably a personal preference by center and onc/patient.

Good luck and I hope you have no problems with your infusions.  If you experience any pain, let the chemo nurses know right away.

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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote janet c. Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2012 at 2:19pm
Lee,
I only had 4 treatments but I have veins that have always been hard to find when I had blood taken so my medical oncologist said that I had to get the port. She said that you have to have at least 3 or 4 good veins to get it without the port.
Janet
dx 12/08 @47yrs.old TNBC stage 2a grade 3, 2.1cm. partial mastectomy sentinal node negative BRACA negative Cytocan/Taxatere x4 radiation 36 or 38rounds
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BamaRachel Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2012 at 9:51pm
Personally I'd insist on the port.  You only have one hand/arm to work with.  If you're getting either Adriamycin or Epirubin, that is very hard on your veins, and, as Donna pointed out above, can cause many problems if it leaks out of your veins. 
DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2012 at 9:59pm
Dear Lee,

I agree with those above and would request a port...and I understand it is not being presented to you as choice...I would try to enlist the oncologist’s help or get a UM patient advocate involved.

good luck!!!!!

all the best,

Steve


Edited by steve - Jan 25 2012 at 9:59pm
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2012 at 12:50am
Hi Lee,

EDIT later on 1/26/12:
Lee, please disregard my post below of earlier today.
I had forgotten that you already had the SLNB.
I apologize for any confusion I may have caused.
My below thoughts were from the perspective of someone without any surgical
procedure prior to chemo. Your situation is different.
You are correct that there are precautions to consider on an arm that has had a lymph
node procedure.

****NOTE: All below thoughts from perspective/situation of chemo prior to SLNB/SLND****
                   Having had a SLNB prior to chemo is a different situation.
                                                  ....................Judy              

(original post)                                        
Sharing some of my thoughts.
When I had chemo (DD ACT....total 8 IV insertions), a port was not offered as an option.
Find it hard to believe now that I did not ask the pros and cons of ports back then.
Think I was glad to avoid a procedure and just wanted to start the chemo.
Fortunately, I have good veins and my veins held out.
One thing my oncologist did recommend: for the IV nurse to try to use the arm that
would have surgery to save the veins in the non-surgery arm. (Although a few times
I did end up with the IV placement on the future surgical arm side)
The IV nurses said for most MD's it was OK to alternate arms for IV infusions.
(edit later on 1/26/12:
Please note "the arm that WOULD have surgery stated above".
I had no surgery prior to chemo and thus had option of 2 arms.
Thus, Lee, what I wrote above is not helpful for you to consider as you situation
with a SLNB arm is different from my situation of no surgical before chemo.)


From people I have spoken with and from what I have read:
It seems to me that many who have ports are glad they had them and did not have problems.
It seems to me that many who had IV infusions tolerated them and did not have problems.
On the other hand, some who had ports did have port problems. Some who had IV
   infusions did have infusion problems.
Again, if only one knew how one will respond to each of the choices!
I think different oncologist's experiences with ports or IV's may enter the situation.

After reading all the posts and your research, you might consider seeing what info the
U of M cancer line gives on ports or no ports for ACT chemo
From University of Michigan: A NCCN Comprehensive Cancer Center.
University of Michigan Cancer Center: Cancer Answer Line   Nurse
1-800-865-1125        M-F    8-5:30pm EST
www.cancer.med.umich.edu/about/cancer_answerline.shtml
Then, with your U of M cancer line info and the info you have researched, you can discuss
the port or not port matter with your oncologist.
As we all know, everyone's situation is different and needs the best individual plan made by
one and their physician.

Think the above point made above that one needed at least 3-4 good veins to do chemo
without a port is a good one.
Also, have seen reference that a port may not be a consideration if:
      -   there is a history of forming blood clots
      -   having a body size that will not allow for proper port placement or port access .
Again, reasons to discuss one's situation with one's physician.


The following is very general info. Was hoping to find something more comprehensive.
Disregard if too general and/or you are already aware.
This link gives some pros and cons of ports and IV's.
http://breastcancer.about.com/od/lifeduringtreatment/f/port_vs_iv.htm   
This link is by a PhD who had IV infusions ( the infusions were for multiple sclerosis
but she gives tips for starting IV infusions in general)
http://ms.about.com/od/treatments/a/vein_prep.htm

With your great researching skills, you and your MD will make the best plan for you.

With caring and positive thoughts,

Grateful for today..............Judy





Edited by Grateful for today - Jan 26 2012 at 12:35pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2012 at 1:25am
Hi Lee,

I have helped two women who had collapsed veins two months into chemo. It became a real problem for one of the women, especially, because she had low blood counts and they were afraid to do the port procedure due to her compromised ability to fight infection.

Most women experience considerable fatigue during chemo and I think a port installed pre-chemo is more easily tolerated by the patient.

good luck to you,

Steve
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2012 at 2:36am
Lee, i did not have a port, my surgeon didn't think I needed one. I had eight infusions, all but one in my arms. Drink lots of fluids before the infusion, plumps the veins up. My surgeon told me if finding a vein was a problem, i had the option to have a Picc line.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2012 at 6:59am
Thanks for all of your input.
One thing, I thought I read somewhere that one should avoid using the arm on the side that had the SLNB for any sort of manipulation, including blood pressure measurements , IV placements, etc. to avoid development of lymphedema.
Has anyone heard about this? If so, it seems like I would only have the veins on one side for chemo.
Lee


Edited by Lee21 - Jan 26 2012 at 7:05am
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2012 at 7:35am
I was also told to avoid any sort of manipulation on the side that I had surgery and removal of lymph nodes.  I had a port placed prior to starting chemo, even though I was only scheduled to have 4 infusions.  My oncologist said it would be easier on me and I think it was.
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2012 at 7:50am
Dear Lee,

Your understanding is my understanding regarding using the other arm.

It is still hard for me to believe that if you insist you cannot get the port. I have seen several cases where the port was installed, even the day before chemo but most physicians seem to prefer a couple of days before.

My daughter has terrible veins and she had the port. She found it extremely helpful but was also very happy when it came out. As with all of this the marvelous women here are sometimes not left with wonderful choices but at the end of the day hopefully the chemo will do its thing and that is the most important thing.

again, good luck with your treatment.

warmly,

Steve
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2012 at 7:51am
Lee,< ="text/" ="" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0">

You are correct.  I was told to avoid any needle pricks/draws on the side I had surgery and removal of the lymph nodes as it can increase the chance of lymphedema.  Since you had SNB surgery, I'd be cautious about needle draws on on that side.  I was told to be cautious to any injury to that side, like a cut.

I've had chemo twice, once without a port and once with.  The first time I was so scared of the idea of getting a port and going through the procedure.  The port procedure was pretty quick and easy.  I had it about a week before I started chemo.  I was very sore the first few days, but by the time I had chemo, there was no soreness at all in the port area.  Now I don't even feel anything in that area.  (Yes, I still have mine.  Still superstitious about getting it removed.)  I know some women have their port placed the same day they start chemo.  My opinion - I wouldn't want to do both of them the same day.  

I met a woman at my infusion center and it was her first chemo day.  They couldn't get her veins to work after much trying and had to stop.  They told her she'd need to have a port as her veins just wouldn't work.  The next time I met her, she was getting chemo through her port.

I hope all this information helps.  Everyone's experience is unique to them, but I think it helps to know how others have fared so you know what to look out for.  

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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2012 at 12:38pm

Note: What I posted earlier today has been edited. Please see above edit. Thank you.
           
                                           Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BethP Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2012 at 1:14pm
Lee,

From all the articles you have been posting on this site, I thought you had been a member for a long time. I didn't realize your diagnosis was so recent. I'll post this reply in case it may still be of use to you.

Two of the three surgeons I spoke with said a delay of 4-6 weeks between diagnosis and surgery or chemo (whichever you choose to do first) was fine. I would take the time you need to feel secure about your decision. If you are able to go out of state to a premier cancer center like MD Anderson, then by all means do it. 

I wouldn't beat yourself up about the mammogram. I had a mammogram every year for the past 9 years, and the breast mass didn't show up on it, though the lymph node did. Nobody, including me, has ever been able to feel my breast lump because it is near the chest wall. 

If you do get a second opinion, I suggest asking about the issue of removing the nipple. The surgeons I met with suggested that nipple involvement was one reason to have a mastectomy. 

Best wishes to you. You seem to have done a lot of research, and I am sure you will make a good decision.

Beth
Dx November 21, 2011: IDC, not staged; Gr. 2 nodes, largest 2.6 cm; Gr. 3 breast 1.2 cm; neo-adjuvant TAC; lump. + 16 nodes PCR
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2012 at 1:34pm
BethP,

Because the time between Dx and Rx (12/9/11 to 1/30/12) is almost 2 months, I have had a lot of time to do research. Part of the reason for the time lapse is the Xmas holidays and my getting a second opinion at UCSF which turned out to take a lot longer to schedule than initially anticipated.

You are right, can't look back and think shoulda, coulda, woulda....must go forward.

I got my echocardiogram for pre-adriamycin and all set (I hope) for Chemo Monday.

Lee
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2012 at 2:14pm
The nurse practitioner told me last week that the only complication they had at the cancer center was with a port (I don't know how far that goes back and what the circumstances were).  I emailed my oncologist today and got an emphatic "no" to my query re: port.  I'll see her on Monday and ask for her reasons.  
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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