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StacyA View Drop Down
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    Posted: Sep 26 2010 at 10:22am
Good Morning,

I am new to this site, but not new to cancer.  I was diagnosed on my 37th birthday back in 2004 with DCIS and Invasive DCIS (tumor 2.5 cm). Had mastectomy, AC/Taxol.  Then in 2007, had a recurrence in my Internal Mammary Lymph Nodes, surgery to remove nodes, then radiation.  The nodes have been slow growing over the past three years and just went through 5 rounds of cisplatin with not much change. Today, I am starting Xeloda with a nicotine patch to help with hand and foot syndrome.  

My question is, does anyone have any tips on handling the side effects of Xeloda?  Any help is greatly appreciated!!  Healing thoughts to everyone out there!!

All my best,
StacyA


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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Sep 26 2010 at 10:35am
Welcome Stacy!
 
I am so sorry you have recurrence.  Once is plenty but then we are all waiting for the next trip to chemo, etc.  At least you did have three years, which is great!  I am sure we never really get over this, we just learn to live with it. 
 
If you could tell us more about your tumor, type and grade, it would give the members an idea of what you are dealing with.  Are the nodes that are involved on the same side as your mastectomy?  How many nodes were involved and are they also TN?
 
I don't have personal experience with Xeloda but I know others have and they should be around soon to answer your post with some great information and experience.  We are here for you and will support you in any way we can.  I know you are a strong person and will get through this too!
Hugs, Your sister on the journey, Helen in NS
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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dmwolf View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Sep 26 2010 at 9:10pm
StacyA, welcome to our community.   Interesting, using nicotine with Xeloda for the hand/foot.  I hadn't heard of that before.  The thing I've heard that helps most with hand/foot syndrome is bag balm and sleeping with the balm on your hands and feet under socks and even gloves.  The other thing people do is if the side effects are too troublesome, people reduce their dosage, apparently without a loss in efficacy in those for whom the drug is efficacious (I'm not sure what % that is).   Cisplatin is some heavy duty stuff.  You must be really glad to be off of that.  It's great that your nodes are growing so slowly.    Three years of slow growth in nodes only is atypical of TNBC.   I don't know if you are in the mood to do so, but you could count that as a real silver lining.  We have some other folks with metastatic tnbc with node-only recurrences and they do very, very well.  It sounds like you are in that camp.   Probably the slow growth rate is exactly the reason cisplatin was not effective.  Cisplatin works by damaging DNA, so cells that either don't divide much or have good repair processes are invulnerable to it.   It is the flip side to chemo-sensitivity.  On the one hand, we want drugs that work on our cancers, but sometimes having a cancer that resists drugs is actually a good sign.  A sign that the cancer acts pretty much like normal tissue.  Do you see what I mean?  Is there any way to get at the nodes surgically or with radiation?   I wonder if that would be a better way. 

Anyways, forgive my wool gathering.  Do you belong to an online community called 'inspire'?  If not, you might want to visit there as well (google 'inspire advanced breast cancer' and you'll find it).  There are lots of women on there dealing with advanced bc, with many threads already on there about xeloda.  You can also visit our metastatic/recurrence subforum and ask there and search threads.  There are lots of nice, knowledgeable women at both sites, though more traffic on Inspire.

Please know that we are here for you, whether to lend an ear or find information or anything else. 

Much 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote StacyA Quote  Post ReplyReply Direct Link To This Post Posted: Sep 27 2010 at 7:01pm
Hi Helen and Denise,

Thank you so much for getting back to me!!  I've never written on a support group page, and it was pretty neat to see your responses, kind words, advice and encouragement!!

I will definitely check out the website that Denise mentioned, thank you!!!

It's strange, I seem to have puffy eyes already on Xeloda.  It's only been two days!  

Helen, in response to your question about my tumor type...

The lymph nodes I had removed in 2007 were the same type of cancer as in my original tumor.  I can't believe I'm going to say this, but I don't remember what my tumor type and grade was back in 2004. I'll have to go back through my notes and see if I can find the original report.

I had a 2.5 cm tumor in my right breast with no lymph node involvement.  It wasn't until 2006 when I asked for a bilateral MRI that they saw the lymph nodes in the center of my chest were bigger than they were supposed to be (the IMLN - internal mammary lymph nodes).  I went every three months for MRI's until they finally did a PET CT at the end of 2006 and found the lymph nodes were suspicious for cancer. I had two surgeries (one for IMLN and one for paratracheal lymph nodes) and found the cancer was the same as my original tumor.

Since I already had surgery to remove the internal mammary lymph nodes, and then radiation, they are telling me that biopsy and surgery would be tricky because of all the scar tissue and the placement of the nodes. They are on my mediastinal (under my chest wall) in the center of my chest.  
Given the behavior of the nodes it is most likely the same cancer and we need to treat the disease with chemo.  (They did have to collapse my lung to get at them in 2007, so I'm not really looking forward to a surgery that they don't feel confident in doing).

They did talk about cyberknife radiation as a possibility where they target the area, but we haven't revisited that option yet.  Other radiation wouldn't be an option because I've already been radiated.

It's tough because i don't have my original team, I moved two years ago and don't have any of the same doctors.  

I do feel extremely blessed that this thing has not gone further, but would love to see a day where I don't have to worry anymore.  It's been a long road, as you both know, and at some point I would love talk about it in the past tense :)  

Until then, I am grateful for all of the love and support around me!  Thanks again for taking the time to write!!  I really appreciate your help!

Big Hugs to you both!!
Stacy

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Post Options Post Options   Thanks (0) Thanks(0)   Quote StacyA Quote  Post ReplyReply Direct Link To This Post Posted: Sep 27 2010 at 7:04pm
Denise, 

Thanks again for explaining how cisplatin works.  I am glad to be off it!!  It was pretty tough going.  I worked for the first three months, then took a break :))  I'm about to go back to work on xeloda next week.  I hope the side effects don't get too bad!! 

:)Stacy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Sep 27 2010 at 7:39pm
No problem Stacy!  We are happy to reach out to you anytime!
 
I agree it would be difficult to have a whole new team with this round of treatments.  I am hoping that I will have the same team with me after this biopsy in October.  If not, I am sure they will be just a well informed and if they are not, they will be by the time I am finished with everything. 
 
I am sure someone will be here to let you know about their regimen with Xeloda!  Hang in there girl, we will all make it somehow, someway....
 
Keep in touch with your journey,
Hugs, Helen in NS
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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harbin View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote harbin Quote  Post ReplyReply Direct Link To This Post Posted: Sep 28 2010 at 2:15am
StacyA,
 
I have very similar situation as yours and would like to share with you. When my BC came back early this year, it was also in internal mammary lymph node. But mine growed for fast from pea size to 4-5 cm within 3-4 months. I also had surgery to remove it and part of my 2nd/3rd rib bones and sternal bones. I also had radiation after the surgery. I have been under chemo cisplatin treatment for past 4-5 months after the radiation. Fortunatelly, I am well tolerated cisplatin with very minor side effect. My doc. is monitoring some small nodules discovered in my lungs which they considered as lung mets.  I am going to get scan next weeks to see if cisplatin has worked or not. So, I am very nervious about the scan. 
 
You mentioned that you had 5 rounds of cisplatin, I wonder how many weeks is each round? How many months of cisplatin you had in total before it's determined that it did not work well for you?  My cycle is every 3 weeks on and 1 weeks off. I am finishing my 3 cycle tomorrow. My doc. also mentioned that xeloda would be one of my options later. But she want me to do PARP trial if cisplatin does not work. I am also very nervious about that too. I hope xeloda will work well for you and side-effect will not be too bad.
 
All the best,
Harbin
 
 


Edited by harbin - Sep 28 2010 at 10:37pm
4/08 dx IDC,stg2,neg. nodes,4xAC,8xTexol& Avastin,BRCA-
3/10 Recurr Chestwall,surgery
6/10 Lung mets
10/10 Parp
05/11 Surgery on 2 lung nodules
08/11 Parp failed
10/11 Cyberknife 1 lung nodule
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dmwolf View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Sep 28 2010 at 10:45am
Hi, Harbin.  It's good to 'see' you here.   I can totally understand the scanxiety. It's so hard not to live in fear when a scan is coming up, or actually with cancer in general.   I'm glad you've been on the cisplatin protocol you've been on rather than the every three weeks high dose version, which is very hard.  How is your energy?  Your family?    I don't know whether this will help your scanxiety or not, but lots and lots of us have had small nodules on our lungs that turned out not to be cancer.  If they are just a few millimeters in size, they are usually nothing.
Be well,
love,
d
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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote harbin Quote  Post ReplyReply Direct Link To This Post Posted: Sep 28 2010 at 10:59pm
Dear Denise,  Thank you so much so your nice message and comforting words. I really hope those nodules are not significant, but you know you always think the worst scinarios. We will see in next couple of weeks. For the current cisplatin treatment, you are correct, if I take the bigger dose in every  three weeks, which my dr. originally suggested, I may have much hard time with it.  My energy level is good although I am in disability leave, I have tried to resume my workout routine at Y's which I did before the BC came back half year ago. It took me this long to get my life together. I have a very support family and loving husband . I have two daughters 20 and 16. This summer, my older daughter came back from college and was able to drive me for my treatments in SF. I felt so good about that. I kept thinking I can't leave my family behind and have to stay possitive and fight this terrible disease.
I hope you are doing well on your surgery recovering. I am happy that you can put this fear behind.
Hugs and love,
Harbin
4/08 dx IDC,stg2,neg. nodes,4xAC,8xTexol& Avastin,BRCA-
3/10 Recurr Chestwall,surgery
6/10 Lung mets
10/10 Parp
05/11 Surgery on 2 lung nodules
08/11 Parp failed
10/11 Cyberknife 1 lung nodule
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Post Options Post Options   Thanks (0) Thanks(0)   Quote StacyA Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2010 at 12:15pm
Hi Helen, Denise and Harbin,

Sorry it has taken me so long to get back to you!!

Thanks so much Helen in NS!!  I wish you the best with your biopsy in October.  I don't know what you've been through or have yet to do, but I'll be thinking of you and sending healing thoughts your way!

Hi Harbin,

Thanks so much for writing.  I'm so sorry things grew so quickly and you have been through so much! In response to your question, I did cisplatin once every three weeks.  I started April 1st and went every three weeks except for a couple of times when my white blood cell count was too low and I had to wait a week and take Neupogen (which I really don't like!!)  Back in 2004 during AC/Taxol I did Neulasta, I used to call it Neucrappa ;)))  I had really bad pains in my legs after Neupogen and Neulasta.  Hope I don't have to take that again!

Cisplatin was pretty tough on me, and I ended up taking a leave from work after being on it for three months.  Because I was on a trial, they were scanning me every six weeks, after every 2 cycles.  After the third scan they could see that there wasn't much change and didn't think the toxicity to my body was worth it.  

My doctor was talking to me about the carboplatin trial with parp inhibitor too, but she also thought Xeloda might work for me.  I opted for Xeloda because I wasn't up for another heavy duty chemo again so soon.  I really want to go back to work, and know I won't be able to do it on carboplatin.  I know my body, and the IV chemo's are really hard on me... emotionally and physically.

I'll do what it takes to heal, but I also feel that quality of life is important and want to feel like I keep moving forward.

I only had one year off since 2004 from having scans every three months, and that year I spent having reconstruction surgeries.  I do find a there is a gift every time I have to go through this, and try to keep a positive attitude through it all.  

I wish none of us had to go through any of this!!  My wish and hope is that a more humane treatment will be discovered to treat this disease.  Our bodies react differently to each drug, and we all feel some kind of pain and discomfort, but it seems that everyone I have met handles it with grace and beauty.

Healing energy and thoughts to you!!

Hugs!!

Stacy

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Post Options Post Options   Thanks (0) Thanks(0)   Quote harbin Quote  Post ReplyReply Direct Link To This Post Posted: Oct 01 2010 at 12:19am
Hi Stacy, I was the same trial you had with cisplatin. I was on it only for 1 cycle before I had surgery. My dr. wanted to see if cisplatin can shrink my tumor in the internal mammary node before doing the surgery. It did not seem working, so we went ahead for the surgery. Since then, I have been receiving cisplatin treatment in last three months, but it's no longer a trial. The scan next week will give clear indication whether the cisplatin is working for me or not. I really hope it works since I am scared to move to my next option - Parp trial. I hope Xeloda works for you and well tolerated. Please keep us update.
 
Love and Hugs,
Harbin
4/08 dx IDC,stg2,neg. nodes,4xAC,8xTexol& Avastin,BRCA-
3/10 Recurr Chestwall,surgery
6/10 Lung mets
10/10 Parp
05/11 Surgery on 2 lung nodules
08/11 Parp failed
10/11 Cyberknife 1 lung nodule
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