conflicting treatments

Hi tKoss, here are a couple of links on stage 3 adjuvant treatment and options based on latest research from clinical trials. The second link is to Onclive and there is a series from last June ASCO meetings and if you go to #5 at bottom of page you will see next videos in series which continues from first video link I gave you. I can’t remember if you have to join or not to see videos but if you do need to join there is no cost and they don’t spam you afterwards. Best wishes!!!Ed https://www.youtube.com/watch?time_continue=32&v=TE9bDoHplzQ&feature=emb_logo https://www.onclive.com/peer-exchange/malignant-melanoma-management/molecular-testing-for-stage-iii-melanoma

I have been on immunotherapy for 3 years with no port. I’ve worked full time almost for the entirety. However I have suffered bad side effects at times which made me miss many days of work.. however I am not the expert on immunotherapy vs Braf adjuvant treatment.

Ed has given you the best resources by the top doctors in the melanoma world. All I can add is the port is more of a personal decision – just weigh the pros and the cons. I opted for no port and have been having infusions for 2.5 years plus blood draws, etc with no issues. But discuss with your doctors. Good luck!

I wasn’t recommended to have a port. I have “tiny veins” that tend to make nurses struggle but immunotherapy seems to involve a blood draw before testing and one vein for infusions. I’ve been asked if I had a port a few times but never needed one.

I have received immunotherapy for 4 years without a port. I received immunotherapy every 3 weeks, then every 2 weeks, then every 4 weeks. Every 4 weeks is more convenient, if you can tolerate the side effects. You might begin 240 mg infusions every 2 weeks. Then switch to 480 mg infusions every 4 weeks. Combo ipi/nivo side effects are often much more severe than those from nivo alone. I received ipi/nivo immunotherapy and had severe side effects, but I had stage 4 melanoma.

They may have ordered or recommended the exact same drug. Opdivo or nivolumab can be given biweekly or once a month. I have stage IV melanoma and have decided on a combo (Yervoy+Opdivo). After two infusions, I ended up with a liver issue and had to be taken off therapy. Once I was able, I resumed biweekly infusions of Opdivo only. Basically, we felt that should anything go wrong again it is easier to stop a train moving at 50 miles an hr than one at 100. The other immunotherapy drug is known as Keytruda (pembrolizumab) and is a sister drug of Opdivo. Single drug immunotherapy usually involves Opdivo or Keytruda. BRAF status is necessary for targeted therapy and is usually reserved as a second line treatment, should immunotherapy fail. The problem with targeted therapy is that while 90 % of tumors respond, the response is usually temporary and eventually 100% of tumors start growing again. As far as the port is concerned, it is all individual preference. For me, it is a life saver and I cannot imagine doing it any other way since I have a needle phobia and my veins would be scarred from the zillion of pricks I have received over the past year. Remember that in my case due to liver complications, I did not only have once a month pricks but sometimes daily and then twice a week and weekly for months. Also, having a power port allows you to get contrast directly through the port with CT scans and MRI’s should you need these. Single drug infusion is fairly fast 30 minutes to an hr depending if you choose biweekly or monthly but with all the preparation it easily takes an hr or an hr and a half. Prior to each infusion you will have bloodwork and usually a visit with the oncologist. Personally, I found the combo really rough because of the side effects. Opdivo is much, much easier.
We are all unique and what is correct for one person may not be ideal for another. Regardless of which immunotherapy you choose, it’s important to feel confident and optimistic. The key is to get what works for you.
Best of luck.
Melanie

Merry Christmas!
I’m stage 3C and opted for Oodivo. However, I requested testing back in 2012 so we know I am Braf negative. My melanoma specialist recommended monthly infusion of Opdivo but my local oncologist recommended twice a month. I tried monthly and my liver started getting angry 3 months in. I switched to every other week. I did opt for a port as my veins are shot from Interferon back in 2009. I have no regrets about the port especially since I will be continuing Opdivo for another year.. my main side effects have been joint paint, fatigue and swelling. I take 5mg prednisone daily and have been able to work full time. I hope you find answers. Hang in there!

Hey Tkoss,

You have gotten some good information from these peeps.

Yes, you are correct. Some folks get a port. Some don’t. I took nivo for 2 1/2 years with no port and did fine. However, for others, it makes attaining treatment much easier. There is no significant pain once the device is inserted. The only risks are infection or clotting…both relatively rare.

The ipi/nivo combo is FDA approved for Stage IV or unresectable melanoma – not as adjuvant. There are some studies ongoing with Stage III adjuvant patients with arms that get nivo alone and arms that get the combo. I don’t know if they are still enrolling or not.

Nivolumab (Opdivo) as a single agent is approved for Stage III adjuvant melanoma treatment. Dosage recommendation is as follows: “Recommended Dosage for Adjuvant Treatment of Melanoma
The recommended dose of OPDIVO is 240 mg administered as an intravenous infusion over 60 minutes every 2 weeks until disease recurrence or unacceptable toxicity for up to 1 year.” However, it can also be dosed at 480mg every 4 weeks if you and your doc wish to. Data wise – so far – there appears to be no difference in side effects between these two dosing schedules – though some patients will have different experiences. Most patients prefer not having to have the infusion as often if they can manage it.

Targeted therapy in the form of a BRAF/ MEK combo is also approved for adjuvant melanoma treatment for those who are BRAF positive – “TAFINLAR, in combination with MEKINIST, is indicated for the adjuvant treatment of patients with melanoma with BRAF V600E or V600K mutations, as detected by an FDA-approved test, and involvement of lymph node(s), following complete resection.”
Here is the package insert: https://www.hcp.novartis.com/products/tafinlar-mekinist/advanced-melanoma/

Here is a pretty good review of adjuvant treatment options: https://www.uptodate.com/contents/adjuvant-therapy-for-cutaneous-melanoma

Here is more info on adjuvant melanoma than you probably wish to know: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=adjuvant

Hope that helps. I wish you my best with whatever you decide. celeste