Starting Interferon, visit to lymphedema clinic

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4/7/2011 11:04pm
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Replies: 5

Hi. Unfortunately (?fortunately) the clinical trial Dr. Samlowski ( I love that guy by the way) mentioned putting Interferon head to head with IPI is not opening in time for me. With my lesion being ulcerated he doesn't think I should wait another month or more. I asked tons of questions and will start my Interferon treatments on Monday. I have to say, I had a sense of peace and a feeling of optimism after making that decision. I initially thought I would watch and wait, but had a nagging feeling. Insurance company delayed approval as long as they could. I will get me picc line put in tomorrow. I'm anticipating feeling pretty bad and have lightened my schedule to try working 1/2 days. Stocking up on Alleve, tylenol, ibuprofin.

I also saw a therapist at a lymph clinic today. I have some swelling in my right leg which extends to the foot. Next week I will learn about massage and get a tighter stocking for that leg. Hope that will keep it from getting worse. I am 7 weeks from my surgery WLE inside of right knee and lymph nodes removed from right groin.

Thanks to the post of "Interferon Glad you did it?' Great replies!

Best of luck to all of us!!

 

Julie in Las vegas 3b

Hi Julie,

Good luck! I have done the interferon and have had extensive lymphadema problems and therefore treatments including leg wraps, compression stockings, etc, so please write me if you would like to talk.

Vermont_Donna

stage 3a

Hi Julie,

I didn't do Interferon and still developed lymphedema within a few weeks of my second surgery (all nodes under left arm were removed in 2 surgeries).

I actually feel fortunate, for lack of a better word, that it started as quickly as it did because my medical team knew what it was,  I learned that it can start even 20 years after surgery and then docs have to figure it out.

I'm glad you're at a lymph clinic and have therapists who know how to treat you. I had that also, did the wrap, and will wear my compression sleeve and glove for life. My surgeon has tried to tell me that it might go away, but my lymphedema therapist specialist told me it could be controlled but it was for life. I'm going with her!

Anyway, it's manageable and doable and I'm grateful for my mark of grace for two reasons: I no longer look like a balloon waiting for someone to stick a pin in...my arm & hand looked like they would pop, and, when people ask me about them I get to tell them my story and tell them to keep a check on their own skin & moles.

While I can't speak to the Interferon, I can offer empathy with the lymphedema. I also have RSD in my left arm and have since Oct 1999...my left arm is taking quite a licking but it keeps on ticking.  Lucky I'm a righty.

Take care and keep plugging away!

Grace and peace,

Carol

Carol, thanks for your response. I feel like the more I can learn about this, the better I will be able to take care of myself. Plus it makes me feel a little more in control. Just a little :)

Julie

Donna, thank you for your reply. I'm enjoying my last 2 days before starting interferon. My nurse painted a pretty grim picture, but I think she made so bad that if I felt any better than that I will feel quite fortunate!

Julie

Hi Julie,

 

I have a somewhat similar story.  I weathered interferon and battle lymphedema in my right leg as well.  I live in Orlando where the humidity can increase swelling but the good news is that there are many days where I don't even wear a stocking and experience little swelling.  I had to have all of the lymph nodes in my right groin and pelvis removed, so I am one of the worst case scenarios.  However, exercising does help.  Put your stocking on and do some cardio.  It will encourage the natural movement of the lymph fluid and I am sure you will see improvement.

Good Luck!

P.S.  I had srugery and intereron four years ago and have had NED ever since!