› Forums › General Melanoma Community › Malignant melanoma
- This topic has 8 replies, 4 voices, and was last updated 7 years, 10 months ago by
Bubbles.
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- April 19, 2018 at 3:09 pm
I am currently on Opdivo and my doctor told me not to think that results would show up quickly, saying it could take a few months…so kind of surprised your mom's doctor said that.
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- April 19, 2018 at 4:30 pm
I would also say it is still early in her treatment but is she experiencing any side effects? I would say if she is having side effects then her immune system is reacting. If she isn't having any side effects then her immune system may not be reacting and it may not be working. Remember about half of patients who receive it don't react to the drug.
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- April 19, 2018 at 5:14 pm
Many melanoma experts note that when administering immunotherapy, you must ~ "Be patient with the patient." On average responses begin to occur in about 12 weeks. Here is a link to graph demonstrating time to repsonses:
But, as you can also see on that graph, there are those who do not respond until 6 months or more. Not necessarily saying your mom should wait that long…but it is something to talk about with your doc.
Sadly, it is also true that not everyone responds to immunotherapy. About 15% of folks who take ipi gain a response. About 40% of those taking anti-PD-1 (Pembrolizumab/Keytruda or Nivolumab/Opdivo) gain a response. Additionally, while there are some studies now indicating that those with side effects do gain a better response rate than those with none…it is far from an absolute. That report is within this link:
And finally, here is a basic primer I put together regarding melanoma treatment generally:
Not sure how much all this will help, but hopefully, you can get enough information to have a good doc with your mom's docs and make a good treatment plan for her going forward. I wish you both my best. Celeste
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- April 20, 2018 at 11:48 am
An alternative treatment hat has been documented to be effective for a Stage IV melanoma patient? No.
Many, many things have actually been studied by real live scientists and found to be effective in killing melanoma in the petri dish and some even in mice. However, items…which include anything from existing medications, to various plant and animal components, to foods…have yet to be found effective in acutally ridding the human body of melanoma, esp from a person in the condition you describe your friend. I have followed these studies for years. Here is a link to a post that covers just some of them, with links within to more: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/01/everything-cures-melanoma-and-yes-were.html
The only components that have shown a definitive positive effect in melanoma treatment are: coffee, curcumin, and vitamin D. There are also studies that indicate certain organisms in our gut (good cooties…most easily put there by eating things with the good bacteria in them or that will feed them….like yogurt, kimchi, kefir…) and the use of NSAID's (like advil, aspirin) can make current treatment, like immunotherapy, more effective. However, NONE are going to rid your friend of melanoma if taken alone. AND….while there are studies that indicate that these things do help, there are others that were unable to find any benefit.
You have been given good advice here. The first and foremost being that your friend be seen by a melanoma specialist. With the current treatment protocols, standard of care, and treatments already available…you should already know your friend's BRAF status. She should be put on either BRAF inhibitors if positive, or immunotherapy if not, either probably combined with radiation therapy, ASAP. There is no legitimate reason to withhold either given what you have described unless it is against the patient's wishes.
If those measures fail, then there are many trials that might benefit your friend.
Hope this helps. Celeste
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- April 20, 2018 at 12:00 pm
Sorry, I got confused. For a minute there I thought I was answering another poster with a friend who is in a little different position from your mom. Sorry about that. However, most of what I said applies to your mom and question as well. You need to be sure you are seeing a melanoma specialist. If your mom was given only Opdivo alone, every 2 weeks…then there has not been enough time to determine her response. If it has been longer than I assume, you could ask the docs to add ipi. While anti-PD-1 alone (either Opdivo or Keytruda) have a response rate of 40%….when Opdivo is combined with ipi…the response rate can be greater than 50%. Additionally, BRAF inhibitors combined with MEK inhibitors can be used if your mom's melanoma is BRAF positive. It would be highly unusual for a doc to tell the family of a melanoma patient who is in the condition you describe your mom as:
1. Not responding…if it really has been only 6 weeks of treatment.
2, To offer no further treatment alternatives or additions (like surgery or radiation…both of which might also be options for your mom) because it would be a waste of money.
It sounds as though your mom needs to be seen by someone better versed on how to treat melanoma. I wish there were different and effective alternative treatment options for your mom….but I fear there are not beyond what I described above.
I wish you and your mom my best. Ask more questions as you need. Celeste
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