lindanat

I had lymph nodes removed under right arm in Oct 2016.  No lymphadema but I wore a sleeve for about 6 months and did the exercises that the lymph clinic provided which I think really helped the prevention.  If you have a lymph clinic near, take advantage of their services.  They help!

Unfortunately, the side effects do seem to linger.  I have joint pain and fatigue, although the fatigue has lessened some except at the end of the work week.  I use CBD/THC for joint pain (find a salve or cream).  I am Stage 4 and did yervoy/opdivo for four and then opdivo alone for one year.  NED now so willing to put up with the side effects – an easy trade off.  Best wishes!

Celeste, I'm thinking of you and your current struggle.  But, I know, because you are always so AWESOME, that you will come through this and continue running (even if it is running in place for awhile).  Keep your positive attitude shining and know you have lots of folks in your corner.  You are the best!!!!

Linda

Hello, I too had a lump under right arm. Had mammogram and was misdiagnosed with hematoma. Then went for another opinion and after needle biopsy malignant metastatic melanoma. All within one month. Stage 4. Don’t put it off, just find out. 

You will both feel sooo much better knowing what you have to deal with.  Load of luck to you.

So interesting to read what you have been dealing with.  I had similar situation with side effects.  I am Stage 4. I did the yervoy/opdivo combo (got through all 4 treatments, developed bells palsy and hyphothroidism) and started on Opdivo and got through 30 treatments when I developed shortness of breath and scan showed cancer in remission but pulmonary edema so had a echocardiogram and long story short, the drugs had become toxic for my heart.  Basically, cardiomyopothy which caused me to be taken off Opdivo a bit prematurely and now treating the heart issues.  I have now missed two infusions (I was doing the monthly ones) and will likely miss a few more.  A bit of a teeter-totter – I need to fix my heart but I'm nervous about what the melanoma is doing while the drug is away.  So, you are right – the side effects can pop up when you least expect it.  And – there are so few people who have the same set of parameters as you or I, that it is difficult to get advice with any sort of history behind it.  It just doesn't exist.  My mel specialist had seen 1 patieint where the drug attacked the heart.  So, not a large test group.

Good luck quickcuda6 – we both need it.

Linda

Hey friends,  I have been on Opdivo for 27 infusions and was changed to the new 4-week regimen last week (for the 28th infusion).  So far, so good.  Noticing a bit more fatigue but totally manageable.  I just have to get up from my desk and walk around a bit more. It is interesting to read the different reactions.  I hope Bristol Meyers Squibb is taking note.  Keep fighting on – no alternative, right?

Planning to attend especially since Morganna Freeman recently moved from Angeles Clinic to City of Hope. Hope to see you there.

Linda

I have been on Opdivo for 27 infusions. At around #6, I started to have severe dry eye and no tears. Weird. Went to eye doc and confirmed dry eye. Started on an eye drop that seemed to help over coup,e of months. Continued with Opdivo and eyes are much better now. There is hope. If you can, keep on with keytruda, especially if it is working. 

So sorry that you have to join the world of melanoma.  You are smart to get as much information as possible. The best recommendation I can tell you is find a melanoma specialist. A specialist is so important as you go through this journey. Yes, immunotherapy is doing wonderful work for many folks.  You will learn lots about that. Be patient with yourself and your girlfriend.  You will be presented with lots of information.  There are no dumb questions.  This site is fantastic.  Ed Williams and Bubbles have terrific information.  Bubbles even has a blog which is helpful.  

http://chaoticallypreciselifeloveandmelanoma.blogspot.com

So many good wishes your way.

Linda

I did 4 combo and have been on Opdivo for 23 infusions. I too experience some itching, joint soreness and vitiligo. Also lost my thyroid and pituitary a year ago.  Sounds like we are on the same journey. My last two scans are almost clean and I’m continuing with infusions for at least another year.  The drug is working and I feel better than ever even with some of the minor side effects.  I feel so fortunate that Opdivo is working for me and helping me to be a survivor.  One thing that has helped with the muscle joint pain is medical cannabis cream (a medicated massage cream).  Good luck.  

Linda

I am currently with Dr. Morganna Freeman (Angeles Clinic) – she is fantastic.  I'm Stage 4 diagnosed in October 2016.  I have a local oncologist and get all my treatments at the local hospital (in Fullerton) but travel to LA to see The Angeles Clinic folks regularly.  Dr. Hamid is amazing and is building a strong group of specialists.  Would highly recommend.  Good luck!

I don't know where you live but medical marijuana is a huge help for me. I use a cream that I rub on my legs and it really helps. If you want more info, let me know. I'm stage 4 and also did yervoy/Opdivo and now on Opdivo for maintenance. The joint pain does seem to continue and I really didn't want to take steroids. So this was a good help. 

I don't know yet how much longer.  I'm thinking through the end of the year for sure.  I'm not NED quite yet (have a couple of small nodules on my lungs) but getting there fast.  I'm terrified to go off of it but, at the same time, think the docs and the insurance company will decide for me.