› Forums › General Melanoma Community › Second Opinion Disagrees
- This topic has 10 replies, 7 voices, and was last updated 5 years ago by
Edwin.
- Post
-
- May 3, 2019 at 4:04 am
Made it to Huntsman and met with Dr. Hu. She is a new addition to the Huntsman team, but specializes in melanoma and immuno therapy and worked at UCLA.
She was excellent with communication and explained diagnosis to treatment in very common language. Right from the start she had my attention when she said I was stage 3. Then my fear of the second opinion started to echo in my head as she stated she disagreeed with the treatment paln. She felt it was too aggressive due to the sever toxicites such as diarreah, rash, fatigue and stomach issues. Said that having to take immuno suppressents to contol side effects was not good. Wants to discontinue combo treatment and only do one. Stated in her experience it will not lessen fighting the cancer.
The Vegas team, incuding a doctor that is a melanoma speciatist that previously worked at Huntsman, disagreed and stated they have to be as aggressive as they can and it is stage 4.
Huntmans – cut treatment – stage three – and prognosis 3 -5 years
Comprehensive Cancer Center – full throttle with combo, stage 4 – and prgnosis 12 to 18 months
Both said it is my choice and one dr will support the other – I do not understand how different they options are. Ifeel like I am back at square one. I do not know how to make a decision based on the facts Iam presented with.
Just Venting.
- Replies
-
-
- May 3, 2019 at 11:03 am
Hi Hanlon,
Oh cancer, never cut and dry. I think you have two really good options here. Start with nivo, see how it goes and have the option to throw in Ipi later OR start with the Ipi/Nivo combo and then transfer to Nivo only after the first four combo doses. It really just depends on how aggressive you want to be when you start.
As for whether or not you’re stage 3 or stage 4, I don’t think that determination matters except in treatment options. So don’t get hung up on that.
Also, I’m surprised to hear your doctors gave any prognosis at all. There are many, many people around here who are stage 4 and have been doing great for 5-10 years (ever since we got these glorious immunotherapy drugs). Personally, I’ve been stage 4 for 14 months and am doing great and showing no signs or going anywhere anytime soon!
Thinking of you.
-
- May 3, 2019 at 5:52 pm
Thank you for sharing – and you are so right this is never cut andn dry! It is absolutely insane!!! And I am with you – with all the amazing treatment stories I don't like the months/years thing – it is hard enough to stay up on the mental game as it is.
-
- May 3, 2019 at 12:05 pm
I am sorry you are dealing with all this..and melanoma never makes things easy…from diagnosis to treatment! BUT! You actually have 2 good treatment options (if anything in melanoma world can be viewed as good!!). Either anti-PD-1 product alone (whether Opdivo or Keytruda) has a 40% response rate. Ipi (Yervoy) alone has a 15% response rate with a much higher side effect profile. The ipi/nivo (Yervoy/Opdivo) combo has a 50%+ response rate. However, the bad boy of side effects (ipi) makes the side effect risk much higher. Here is a primer I put together that breaks down basic melanoma treatment: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html
Due to the side effects cause by the combo, only about half of patients complete all the recommended combination doses. But here's some good news:
As Amanda notes, you can always back down to nivo only and add ipi later should you have the need. Additionally, you may take heart from my story as a 16 YEAR melanoma survivor! 9 of those as a stage IV patient, having been treated with Opdivo alone, at a lower dose than you will be getting, in a Phase 1 trial, with my last dose in June of 2013, after brain and lung mets. I remain free of melanoma with no further treatment.
I wish you my best. Celeste
-
- May 3, 2019 at 6:12 pm
Oh my gosh – yes 16 years is wonderful! Thank you for the links and the information.
-
- May 3, 2019 at 3:00 pm
Hi Hanlon, when I read your bio page it said that the experts were not sure what type of cancer it was??? Have they been able to come to a decision on that yet??? Usually stage 4 is when melanoma has travelled to an organ or brain, is that the case with your dad???
-
- May 3, 2019 at 6:02 pm
Good Morning Ed-
To add to the questions, the labs mostly have come back as poorly diff neo with ukn primary. I was getting antsy and there were not a lot of answers to questions so I requested a copy of his file. Dated march 29 there was a lab report that stated 90% sarcoma 6% melamona. We asked both cancer hospitals about it and they are going with melanoma. The doctors do not agree with where it started, one thinks it traveled from the foot when a bopsy was done the other doctor thinks it was some place else in teh body that was dormant. From the original petscan it only lit up under his arm where the mass is.
The unknowns are terrible and the difference of opinions are terrible – but as Amanda said above there are oprions so the positve focus needs to be on that and not what we don't know – but it is hard! 🙂
He is actually in the ER right now getting IV fluids and potassium, CT due to pain nnear liver and now a EKG due to the monitors going off.
-
- May 3, 2019 at 4:27 pm
I am confused as to why they aren’t agreeing on the stage. Is the lymph node involvement far from the original site or there is involvement of many lymph nodes. You can be stage 4 with lymph node and not organ, bone or brain involvement but it has to be far from the original site and more than a few. Localized lymph node involvement is stage 3.
Maybe ask both docs why they have come to the conclusions they did.
-
- May 3, 2019 at 6:10 pm
Cancer Center of Nevada: Stage 4 due to they beleive it came from his foot bioposy and traveled to under arm
Huntsman: Stage 3 because unk primary and not anywhere but the mass on first scan.
I am with you – confused!
The goal is not to focus on the stage with all the new therapies – my dad is older and stubborn in his thinking and hears stage 4 and starts giving away his car to the grandchildren! The mental game is hard – especially when he does not feel good. He was scared to get a second opion becuase he did not conflicting reports. Although we really liked what Huntsman had to say! 🙂
Sorry to ramble.
-
- May 4, 2019 at 12:36 am
Hi Hanlon,
First, you are a wonderful caregiver/advocate for your father, that is no small thing. Second, I'm glad you have multiple good options as Ed/Celeste and rest of the group has discussed. Third, your story is example of why patient advocacy (whether by the patient, the patient family or other people that care is so key). I have a non-melanoma related example. They recently found a cyst in my brain (imaging suggests it is cyst and not tumor, but as we know biopsy is the most definitive). There is the new research from NIH showing it may be correlated to what my dad died of called Progressive Nuclear Palsy. The first expert that my neurologist actually sent a referral to actually his admin called me and said he denied because he doesn't treat anxiety (that wasn't even in the referral). Well the Head of Baylor College of Medicine Parkinson's/Movement gave me the polar opposite opinion from the Head of the Mischer Neuroscience here at Houston Methodist. And the Baylor guy actually told me what he was sure the Mischer guy would tell me, he was wrong, the Mischer guy said the exact opposite, said surgery immediately. Baylor guy actually wasn't aware of the new NIH research surrounding these cysts and questioned me even asking for genetic testing because he said there is no treatment anyway if I develop PSP (once you develop it you have about 7 years left), why would I want that information. Let me tell you, I gave him a piece of my mind, and if he were in my position, he would be first in line to get genetic testing and any other information that might be valuable in future treatment.
Long story short, advocating for yourself or your loved one is SO IMPORTANT. It's hard, and you are doing great and its not that these peope are unknowledgeable, there are just so many variables that go into their practices, research knowledge, new treatments etc and there is a lot of variance in what they believe is the correct approach.
Get the information you can, make the best educated choice for your dad, move with that (as Celeste said these are good options) and you are doing that! great job!
Hugs
-
- May 4, 2019 at 5:17 pm
Your father received one infusion of ipi/nivo and has severe side effects. His original diagnosis of stage 4 melanoma is questionable. He has only one tumor. In such a situation I would skip the remaining ipi/nivo infusions and continue with nivo alone.
In my case two biopsies showed melanoma in bones, I had tumors in many bones and Keytruda immunotherapy had failed. So, I had no doubt that I should receive ipi/nivo immunotherapy. Despite severe side effects from my first ipi/nivo immunotherapy, I received all 4 ipi/nivo infusions.
-
- You must be logged in to reply to this topic.