[email protected]

Hi Lauren,

When I read your post, it brought me to tears because I have lived with almost the exact same thing. I started Sylatron (Pega-Interferon 2b) on 8/12/15 and have had the same issues ever since; however I have never tried or have been offered hydration therapy. All my lymph nodes in my left groin have been removed and my left leg recently has been out of control. Prior to my Metastatic Malignant Melanoma diagnosis, I was an avid runner and worked out all the time. Ever since, I have slowly become very weak and lost the desire to do anything aside from what the physicians have ordered which is comparable to what everyone else on here has been done. I've seen specialists at MD Anderson, Johns Hopkins and Georgetown. Only until recently, was I given the opportunity to get what's called a compression pump. Out of all my specialists, only one provider actually knew about this. I can tell you that the research on it is amazing. And, my insurance covered everything. I literally slide this lightweight boot contraption (it goes up to my thigh). I put a pillow under my leg and sit up and read my kindle. I push the button and it is basically air and compression. It feels like a massage. The compression garmets only prevent fluid. This actually finds pathways to push the fluid out of my leg. I would not have believed it had I not seen it with my own eyes. I do it once in the morning and once in the evening for 30 minutes. My leg is back to the normal size. 

I can tell you, I have tried and still do everything to keep my lymphedmia at bay  I tried watching my salt intake, compression thigh highs, drank tons of water with fresh organic lemons, detox…etc.  If it is out there, I have tried it.  Nothing has worked so well.  To date, I'm still surprised at how many of my doctors have not heard of this  I wasted tons of money on massage for it to only work for a couple of days  although this can be cumbersome (30 minutes at morning and night), I can't believe I went two full years without it!  I do skip days too.  Nobody is perfect.  Anyway, I would be happy for you to contact me for more information because I'm not sure if I should post the information on a bulletin board.  However, if there is anyone who has the same problems that we do, I believe they should know this may be an option.  My email is [email protected]

There are a few other things that I do too that helps and would be happy to share them with you  I would also love to hear about what you may have done to alleviate some of your symptoms.  

To anyone else who have read this post, I would be happy to start a new thread regarding this but although I was diagnosed over two years ago, I still don't really know how to do much on this site.  I tend to read people and what they have to say if I rarely reply or post.  Therefore, if anyone has any advice for me, I'm open to it!

Thank you to everyone for all of your thoughts, insight, questions and advice. Despite the fact that I'm not very active on here, you have no idea how much many of you have helped me in so many ways. 

I keep all of you in my thoughts often.  Keep up the good fight! I was told I wouldn't live the year on 3/6/15 and here I am over two years later!  

Courtney

Hi Cara,

I feel very similar to you and am beginning interferon next week. Would you briefly tell me what the first month was like?  I'm not sure if I will be given it inpatient or what. I do know that at some point I will be able to do the injections 1x a week for a year. However, I am trying to get my affairs in order this week and simply forgot to ask some of these questions. All of this has happened so fast, I really haven't had time to process it. 

I'm so happy and inspired to hear your story. Would love to hear of any medications and/or tricks you used to help with the side effects. 

Thanks in advance,

Court

Hi Cara,

I feel very similar to you and am beginning interferon next week. Would you briefly tell me what the first month was like?  I'm not sure if I will be given it inpatient or what. I do know that at some point I will be able to do the injections 1x a week for a year. However, I am trying to get my affairs in order this week and simply forgot to ask some of these questions. All of this has happened so fast, I really haven't had time to process it. 

I'm so happy and inspired to hear your story. Would love to hear of any medications and/or tricks you used to help with the side effects. 

Thanks in advance,

Court

Hi Cara,

I feel very similar to you and am beginning interferon next week. Would you briefly tell me what the first month was like?  I'm not sure if I will be given it inpatient or what. I do know that at some point I will be able to do the injections 1x a week for a year. However, I am trying to get my affairs in order this week and simply forgot to ask some of these questions. All of this has happened so fast, I really haven't had time to process it. 

I'm so happy and inspired to hear your story. Would love to hear of any medications and/or tricks you used to help with the side effects. 

Thanks in advance,

Court

Hi there,

I know this is a little off topic but I was wondering if you could share with me a little about the first month of interferon at Hopkins?  I'm about to begin the process. 

As for your question, I have done lots of research and do employment law for health care. In my opinion, the best centers are MD Anderson, Sloan Kettering and Hopkins because of their melanoma specialist credentials. 

Thanks for your post… CT

Hi there,

I know this is a little off topic but I was wondering if you could share with me a little about the first month of interferon at Hopkins?  I'm about to begin the process. 

As for your question, I have done lots of research and do employment law for health care. In my opinion, the best centers are MD Anderson, Sloan Kettering and Hopkins because of their melanoma specialist credentials. 

Thanks for your post… CT

Hi there,

I know this is a little off topic but I was wondering if you could share with me a little about the first month of interferon at Hopkins?  I'm about to begin the process. 

As for your question, I have done lots of research and do employment law for health care. In my opinion, the best centers are MD Anderson, Sloan Kettering and Hopkins because of their melanoma specialist credentials. 

Thanks for your post… CT