My therapist and I have been discussing putting together an abstract regarding the possible connection between chemotherapeutic drugs which have hand/foot syndrome as a side effect and the development of rapidly progressing fibrotic Lymphedema. At this point it would be purely anecdotal information, but we are looking for more patient cases that might fit the picture.
Particularly we are interested in hearing from any women who developed Lymphedema closely following taking Xeloda which is an oral chemo pill. If there is anyone who developed LE during a flare up of hand/foot syndrome I would appreciate hearing from you.
I know of one other woman besides myself who developed LE while having severe hand/foot symptoms. Our LE rapidly became stage 2 with aggressive fibrosis although we neither one have large volume increases to our arms. The inflammatory process created by the hand/foot syndrome seems to play a role in developing rapidly fibrotic tissue but that is currently purely a subjective opinion.
I was evaluated by Steve Norton from the Norton Lymphedema School when I was only 5 months post onset of LE and he said my arm had the characteristics of someone who had LE for 15-20 years. With aggressive treatments and ongoing regular maintenance my arm has improved in some areas but still remains very resistant in others.
If we can find enough other cases of women with similar stories we would like to compile all the data for possible review at the NLN conference in San Diego this August. So all input is welcome.
Thanks,
Linda M.
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sushanna1 Joined: Feb 2003 Posts: 415 |
Feb 10, 2008 12:24 am
sushanna1 wrote:
Linda, I have lymphedema in my hand. I did not take Xeloda, but developed a mild case of peripheral neuropathy in my hands (still have some numb areas on my finger tips) from taxotere. I am convinced that my first experience with lymphedema was associated with various side effects of weekly taxotere. Like you I suspect that there is a connection between the side effects of various chemotherapies and lymphedema and have been keeping my eyes open for research on the topic. Thanks for taking the lead on this issue. (Chemo may well be contributing to the number of women who end up with lymphedema after a sentinel node biopsy.) Sue |
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bomber410 Joined: Apr 2007 Posts: 444 |
Feb 10, 2008 08:31 am
bomber410 wrote:
I do believe my LE was triggered by the taxotere. In one published analysis, it does suggest (doesn't state) that with the edema side effect of the taxotere, the surgical side could have LE problems. I can pull the details but that's my interpretation. And, yes, it was fibrotic fairly quickly. But I was never on Xeloda unless it was given to me during a chemo treatment. Sorry to not know. And no hand/foot syndrome. Debbie You can visit my CaringBridge site at http://www.caringbridge.org/visit/debbiecole
Dx 3/29/2007, IDC, 2cm, Stage II, Grade 2, 1/10 nodes, ER+/PR+, HER2- |
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otter Joined: Jan 2008 Posts: 1733 |
May 12, 2008 01:54 pm
otter wrote:
Wow. I just noticed this thread. I guess I should have done a search on BCO before I searched all those other places! I am currently on Taxotere & Cytoxan, and I've been wondering whether there was a link between the fluid retention with Taxotere and the development of LE. I did a Medline search and found a few research reports that looked awfully suspicious, but except for those papers, nobody seems to make the connection. The reason why I was wondering about this enough to even start a new thread was because my chest (at the site of my mast incision) and the area under my armpit that was messed with for the SNB are feeling "tight" lately. I'm 3-1/2 months out from my mast/SNB, and a month ago I had no signs of LE at all (according to a certified LE therapist). My arm seems to be fine--no swelling at all, no heaviness or any of the other symptoms. It's just the chest and under-arm areas that feel strange. This happened midway through my 1st round of TC, but it went away after a few days. This time (round #2), it has lasted much longer. I'm only getting 4 rounds of TC, and I'm halfway finished (#3 is this Wednesday). I'm hoping with this cumulative dosage and schedule, I will get in under the wire and avoid the hand/foot syndrome and neuropathy, as well as LE. otter Dx 1/14/2008, IDC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR-, HER2- |
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LindaLou53 Joined: Jan 2006 Posts: 292 |
May 13, 2008 07:42 pm
LindaLou53 wrote:
Hi Sue, Debbie and Otter. I really hope there will be more specific research looking at inflammation in the body and the development and severity of LE. It makes sense to me that any chemical or biological process that causes tissue inflammation and swelling could certainly contribute to the development of LE and even possibly create a more vigorous advancement of symptoms.
Life is not measured by how many breaths we take...but by the moments that take our breath away!
Dx 11/21/2005, ILC, 5cm, Stage IIIc, Grade 1, 23/23 nodes, ER+/PR-, HER2- |
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