- February 28, 2019 at 4:01 pm
Hi, I am the caregiver for my wonderful wife who has had MS for 20 plus years and now we are Stage IV and starting the treatment. We are not taking any MS Meds because they work against what we are trying to accomplish. I am looking for ways to help her system stay strong and fight off side effects. Does anyone have suggestions that have worked for them or their loved ones?
Thank you in advance, I am a Retired Army Soldier of 23 years, I am not afraid of much, but I am afraid of not doing enough for my wife.
- February 28, 2019 at 4:26 pm
Thank you for your service, I am a disabled vet. I had 5 combos of yervoy/opdivo and then 47 treatments of opdivo. My immune system probably reacted the best it could, it hit the melanoma hard with alot of side effects but none so bad I had to stop treatment or go on steriods. After a combo treatment I was usually tired for a couple of days as in bed 20 hours a day. I had my treatments on Friday so by Monday I was usually at work. The rash appeared on my arms and upper chest the second week after the first treatment but it never itched or burned like most people. I was so happy to see it because to me it meant my immune system was responding. I never had any digestive issues but during this time I ate pb&j sandwich every day and any other foods that would keep my stoole thick. I was also on hydrocodone for other issues which may of help also. My side effects while on the combo were rash, fatiuge and insomnia (which I still have both) fever for 6 weeks, no salava for 11 weeks, killed my thyriod gland, vitiligo (which may be a good sign). After finishing the yervoy I have not developed any new side effects but still all but the fever and my salava vanishes about 3 times a week. My first scan at 8 weeks had huge improvements on 6 of the 7 tumors in my lungs and at 15 months all were gone. Have her drink lots of water and stay as active as she can and it will be a long journey. I just kept telling myself side effects were a good thing because if my immune system was attacking other things surely it was attacking the melanoma also. I am not sure if there are any ways to prevent side effects but to me side effects were a small price to pay in order to kill the melanoma.
- February 28, 2019 at 5:19 pm
The fact that you are reaching out for more information shows that you are already taking great care of your wife!!! As far as avoiding side effects….it's tough. Side effects vary greatly from person to person and you kinda get what you get…if you know what I mean? However, making sure to talk to your wife's docs about what to expect ahead of time and calling them back sooner rather than later, if things are happening that are troubling you, so that any side effects she may develop can be treated rapidly is probably your best bet. Being tired, having joint aches, and an itchy skin rash are very common with the combo your wife is to begin. Worrisome things like shortness of breath or diarrhea should be reported to the doctor because they may indicate unwanted inflammation in her lungs or intestines.
Perhaps it will comfort you to know that there is lots of data that shows folks with a pre-existing immune disease (like MS) can tolerate these drugs as well. Here is an article about that (with additional links to others within) if you are interested:
Hope this helps. Ask more questions as you have the need. I wish you and your wife my best. Celeste
- February 28, 2019 at 6:38 pm
I thank you both for your replies. It means so much, I Like the PBJ! Not sure if she will. I have read that about tolerating, however, I am concerned about what to do to help her MS while taking them. I have been trying to read and search for vitamins and any home-natural diet absolutely anything to just be putting our best foot forward. Please keep it coming, as this for me is more support than you will ever know.
- March 3, 2019 at 5:13 pm
Given what you were asking, you may like the info I put up in this thread: https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/nutrition
Wishing you and your wife my best. Celeste
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