bethy62

Currently finished my 8th of 13, 480 mg, every 4 weeks, Nivo adjuvant infusion 10 days ago. I am in Canada. Side effects vary. My experience so far has been some moderate rashes, moderate headaches ( two extra strength Tylenol suffice), one month of minor hyperthyroidism, itchy eyes, and a bit of loose stools. I have been lucky. I would recommend bringing water to your first infusion and plan on drinking at least 3 liters a day. I take two Tylenol before my infusion and take Benadryl if my eye itchy. I have been lucky with my side effect. My oncologist says, in his experience, about 80% of his patients have minor and manageable side effects. As a nurse, I chart on myself. I started day one recording things like bowel movements, heart rate, any headaches, fatigue, rashes, etc. I write down the day, time what was effective in relieving symptom, how long it lasted, anything I think is pertinent. It helped me pinpoint that I usually will have rash flare up about 10-14 days after treatment, my headaches usually happen about 10 hours after getting up in the morning, when my thyroid was acting up and how to plan for next doctor visit. When talking with my oncologist he agreed that at least half of the patients who did have more serious events had let symptoms go unreported and could have avoided some complications if they had shared sooner with him what was going on.

I haven’t done this treatment myself but I person the I support through Peer to Peer counselling finished her year in July. She is still struggling with Thyroid issues and fatigue. The ” Brain Fog” is still hanging around as is the fatigue. She sometimes it hit’s like a wall. There is also an emotional exhaustion that comes with finishing treatments. it might take a few months.

I experienced hyperthyroidism after my third treatment. As a nurse I knew the symptoms and via my oncologist and research was aware it could happen. I had already been Hypo before starting treatment and was taking Eltroxin. I started noticing heat intolerance, frequent BM’s and a higher than my average resting heart rate that persisted for a few days. The latest blood work was WNL but I called and discussed with my oncologist so we reduced the reduced the Eltroxin until I was not symptomatic. My next blood work was still WNL without the Eltroxin. We only reintroduced the med. when my levels indicated the higher dosage. It takes a few days for the thyroid meds to work. Best to monitor heart rate, heat intolerance, fatigue and other symptoms of Hyperthyroidism to ensure symptoms are under control as Thyroid Storm can be a critical occurrence

My understanding is thymic hyperplasia is a rare disorder. As far as I have seen no but have you researched or spoken to anyone about the side effects of Yervoy?

Hi Andy,
I was wondering where in Canada, I am in Ontario in the Hamilton area and attend Juravinski. I did the full 52 weeks of Interferon in 2010 as a stage 3A. I am currently doing Nivolumab for a local recurrence as adjuvant therapy. I can tell you in a word, yes, you will be immunocompromised. Interferon kicked the crap out of me and I made it through the 52 weeks ( It was my only option at the time as wait and see went against my soul). The first month IV is the worst of it. The headaches the first few days were BAD! I would plan on doing nothing else that first month. I worked from home so could self isolate myself to some degree but still ended up with 3 eye infections, a pretty serious injection site infection and a couple others. It is rough the newer therapies are much less “toxic” but I know they only became approved by Health Canada in November as Adjuvant Treatment for Stage 3 in November of 2018.. Currently, in Ontario, these are still being funded as compassionate care via drug companies. This could be the reason you have not been offered the newer therapies.

Lucy you mentioned Hypothyroidism .Hypothyroidism can cauae muscle and joint pain. I am assuming you are on a thyroid replacement hormone such as Eltroxin? It can take awhile to find the right dosage.

I did Interferon in 2010/2011 & developed floaters in my right eye. They pretty much did not bother me for years. After my 3 monthly treatment of Nivolumab they are back and many times my eyes feel irritated, like being in s smoke filled room. I use a OTC gel.eye dropand if very itchy will take Benadryl.

Sound like mild lymphedema. Compression, lymphedema exercises,elevation. Even though you only had a couple nodes out the seroma, scar tissue anc missing node can cause some congestion and the lymph fluid to move slowly. YouTube has many video with self madsage and stretching that can help move that fluid.

This is a link to Dabrafenib on Drugs.com. It is a very credible source used by health care professionals. You can also use it to search trametinib https://www.drugs.com/sfx/dabrafenib-side-effects.html
Hope this helps

Have you asked your doctor about pain relivers specifically for nerve pain such as Lyrica or Gabapentin?

Mary wanted to let you know you just made me smile in relief. I too did a year of Interferon. It was in 2010. I will be starting Opdivo in the next two weeks and reading your comparison, one who has done both, has boosted my spirts thinking about the coming year!

Can I ask if you have spoken to the surgeon who placed the drain? I had a very similar experience last year after lymphedectomy & JP drain. I also developed a seroma at the site. It is very common in this type of surgery. I ebded up in hospital for 5 days on IV Vancomycin & had the incision opened up & drained. Also had a negative pressure dressing ( wound vac) for 3 weeks because the seroma tunneled. Usually these kind of post op issues or complications are in the scope of your surgeon

Unrelated to my Melanoma I have had B12 deficiency diagnosis for years. I require injection, but yes I most definitely have numbness in finger tips when it is low. I am on Opdivo now and B12 in normal range with no numbness.

Mary can you tell me if you have had any lymphnodes removed or a partial or radical lymphedectomy? If you have you might be developing lymphedema. Did any of your healthcare team talk to you about lymphedema? If can develop as long as a year following surgey and can cause tingling and edema ( though not the kind from fluid intake or that responds to meds.) Neuropathy is nerve pain and it can be experienced after a surgery as nerves recover.