Lymphedema and Xeloda

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DianeKS
DianeKS Member Posts: 241
edited June 2014 in Lymphedema

Just started Xeloda (two weeks on, one week off). It can cause hand and foot syndrome which presents as redness, peeling, and sensitivity. Wondering if any off you here have been on this drug? If so, did you have any increase swelling or problems with lymphedema. I have swelling of my hand as well, so I can feel the sensitivities starting already...

Any advice/experience appreciated. I have also posted in the 'All things Xeloda' thread.

Diane

Comments

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited July 2013

    DianeKS, I took Xeloda for four rounds.  I noticed nothing in my hand or arm, but the skin on three toes peeled right off.  I don't have lymphedema, but I did have a complete axillary dissection and I'm pretty careful with my arm.

    Blessings.  I hope your experience is gentle with this drug!

  • DianeKS
    DianeKS Member Posts: 241
    edited August 2013

    Thanks Sheila,

    Ouch to the toes peeling!  Is that why your toes were wrapped in bright orange on your blog for?  So far so good.  Just hoping I can still wear my garments through this treatment.

    I had a quick look at your blog...LOL about all your lipstick, balm, etc.  Love your sense of humour! Hope that is carrying you through your recon surgery.  I would have to say, that has been the most difficult step through all of my treatment.

    One step at a time....

    Cheers,

    Diane.

  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2013

    Diane, have you been taught to wrap your hand and arm? In case of increased sensitivity and/or peeling, wrapping might provide you with a gentler way to control the swelling.

    Any skin breaks can invite infection, so keep a close eye out for any sign of that and act quickly. Here's a refresher on symptoms to watch out for:
    http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm

    Gentle hugs, and prayers for a very "smooth way" clear through this round of treatment,
    Binney

  • vlnrph
    vlnrph Member Posts: 1,632
    edited August 2013

    No personal experience with Xeloda but am interested in it. An oral agent, it is essentially a "pill" form of 5-fluorouracil (abbreviated, I think appropriately, as 5-FU). That drug has been part of cancer protocols for decades. Perhaps a medical literature search using that reference would come up with information on LE exacerbation. Hope your complications will be minimal, if any! 

  • DianeKS
    DianeKS Member Posts: 241
    edited August 2013

    Thanks for those replies,

    Binney...yes I have wrapped with good effect in the past.  I don't like it but your right it would be an option.  I will review the symptoms and appreciate that info refresher.

    vinrph...might do that search, if I find anything out I will let you know.  good idea.

    I am also hoping for minimal issues while on it.  I guess it is good that no one has replied with any problems.  So I will cross my fingers.

    thanks,

    Diane

  • LindaLou53
    LindaLou53 Member Posts: 929
    edited August 2013

    Hi Diane,  

    I started on Xeloda and Taxotere chemo on Dec 23, 2005.  This was 18 days after my bilateral mastectomy and total left ALND with 23 nodes removed.  I also was on a 2 weeks on / 1 week off schedule initially with the Xeloda. I was taking 3000mg /day divided into 2 doses of 1500mg each morning and night.  Individual sensitivities and responses will vary, but I developed Hand/Foot syndrome fairly quickly on the Xeloda.  Both my hands and feet were affected by severe inflammation, swelling and peeling of skin by late January.  I had my first flare of measureable lymphedema swelling in my left hand and forearm area by the first week of Feb during my 3rd 21 day cycle of Taxotere.

    I believe that the combined inflammation of recent surgery, extensive nodal removal and hand/foot syndrome all were contributing factors to my development of lymphedema.  Due to the severe nature of my hand/foot symptoms, my onc effectively lowered my Xeloda dosage by putting me on a 1 week on / 1 week off schedule which allowed more recovery time between the dose weeks and helped reduce my symptom severity.  Of course, Taxotere chemo is also a contributor towards inflammation and swelling so it really boils down to our individual lymphatic system's capacity to withstand the increased demands created by active phase cancer treatments.

    Knowing what I know now, I would have already been wearing compression garments or daily wrapping, and getting regular MLD to help support my lymphatic system during the onslaught of treatment.  As it was, I started wearing a non-custom sleeve and gauntlet once LE swelling appeared, but should have had a full glove instead.  After I started radiation treatments in May 2006, my professional MLD sessions were halted (a practice which is less likely to be recommended today) and my degree of hand and forearm fibrosis rapidly progressed during this period.

    I would certainly follow all precautions as Binney has suggested, watching for signs of infection and wrapping to help support your lymphatic system.  Be alert to increased swelling or involvement in your hand or arm.  If you don't already have a LE therapist, I would strongly recommend finding one who can help keep your lymphatic system in good shape during your treatment regimen by doing regular professional MLD.  If your hand/foot symptoms progress, be sure to speak with your onc about ways to allow that syndrome to resolve without completely stopping the Xeloda.

    Many, many women tolerate treatment side effects without developing lymphedema and I do hope that will be the case for you.  It never hurts though, to be proactive in your approach and do whatever is possible to try to keep the odds in your favor during this particularly inflammatory phase of treatment.  

    Best of luck and good wishes for you!

    Linda

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