› Forums › General Melanoma Community › Adjuvant Immunotherapy dosage
- This topic has 5 replies, 5 voices, and was last updated 5 years, 2 months ago by bethy62.
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- September 29, 2019 at 1:01 am
Hi,
I just wanted to update those who need to hear that there are oncologists out there that are truly passionate about helping their patients. My husband’s oncologist was able to get my husband’s adjuvant immunotherapy approved through the public system! Our own private insurance has refused to do so due to a technicality.. That is €100,000 that we don’t have to worry about finding a way to fund.The doctors’ plans are to combine the adjuvant immunotherapy with radiotherapy, which based on the research furnished by Bubbles, we feel is the best way forward. Our oncologist mentioned the administration of Nivo every 3 weeks for one year. Is this the optimal time period for adjuvant therapy? I think I may have read that some of you may have taken Nivo for longer, so I’m worried that Ireland may be behind in implementing the American standards.
Also, for any of you who have taken Nivo, could you let me know what has been your dosage? We still have to hear what my husband’s dosage will be, but I would like to be prepared with questions if the dosage is very different to the ones being administered in the US.
As always, I remain truly in this forum’s debt for all the support, knowledge, and strength that you, as members, give me to be able to help my husband.
Thank you.Affected
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- September 29, 2019 at 7:11 am
One more question about nivolumab’s side effects (not to create another thread) for those who have taken it: should we expect fatigue and other worse side effects to kick in immediately, or is it more incremental over the length of the treatment?
My wife is worried about what to plan for in terms of how she still will be able to live her life during treatment. -
- September 29, 2019 at 1:43 pm
Here is a link that indicates how nivo may be prescribed for adjuvant melanoma treatment: https://www.opdivohcp.com/dosing/dosing-schedules
ie – 240mg IV every 2 weeks or 480mg IV every 4 weeks for one year (unless side effects necessitate stopping earlier)Yes, many of us have taking immunotherapy of many stripes longer. Lots of factors played into that:
1. We were ratties in studies trying to figure out dosage. (I took it for 2 1/2 years with my fellow ratties…but as we neared completion of the trial Dr. Weber noted that he felt we had taken it longer than necessary – and this was back in 2013.)
2. Stage IV melanoma is a different animal from Stage III.
3. Adjuvant treatment is different from treating active disease
4. In that vein – the decision to stop therapy is a lot easier when you are disease free vs when bits and bobs still show up on scans.Side effects from any med can vary a great deal from on person to another. Immunotherapy is no different. Fatigue, rash, and joint pain are pretty consistent. I worked 12 hours shifts, full time through my treatment, missing only 3 days, while others are not able to do that. Side effects may show up very early on after only one or two doses….some show up AFTER immunotherapy is completed. Most side effects start gradually and become worse over time. But there are many on this forum who found that side effects became more manageable over time.
Here is a report I put together on the side effects of nivo: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
Here is another link that addresses it: https://www.mdanderson.org/publications/cancerwise/immunotherapy-side-effects–what-to-know.h00-159228090.htmlThe best timing of start date in regard to adjuvant treatment is not entirely clear or absolute. Sooner than later (to some extent) is usually better in melanoma. However, you seem to be making good and appropriate steps in your husband’s care as well as its schedule. I was a Stage IV melanoma patient, post brain and lung mets in April of 2010. Because I had no treatment options beyond surgery and radiation, it was the very end of December before I got my first dose of Nivo in my trial’s adjuvant arm for Stage IV melanoma peeps – and I am still here. NED for melanoma with no further treatment past my June 2013 dose.
Hope this helps. I wish you both my best. Celeste
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- September 29, 2019 at 11:59 pm
Heck ya! Thats some good news right there! As you might know, i to was battling my insurance (then Kaiser, a US healthcare mafia haha) now im gettin my insurance turned around so i can be in the care of an ACTUAL Melanoma specialist! So i feel your pain in regards to the whole bs of it…I hope your husband can get going on something, Opdivo, Keytruda, Yervoy, not sure if its approved yet in your country?? Or at the least in Irelands Government clinical trial system….cant help you with dosage,i think mine was at 165mg? At every 2 weeks, Its been awhile since i took Opdivo…..Plus, isnt the US standards of measurement (fluid weight etc.) different then across the pond? Either way, i hope he starts kickin some Mel butt soon!! -
- October 1, 2019 at 11:50 pm
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.
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