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April 19, 2014 at 1:43 am #21927KatBParticipant
My husband was diagnosed Stage 2 in 2008, 1.24mm ulcerated, in his right arm. He had WLE and SLNB. Everything checked out ok so after that he went for 6 month, then 12 month follow ups, with the most recent in October 2013.
Then, in February 2014 he developed expressive aphasia and balance issues. CT revealed a brain tumor, 3.1cm. It was surgically resected 2/26/14. He then underwent (5) TrueBeam radiosurgery treatments between April 9-15. Scans have shown no other tumors in his body. He is scheduled for a PET scan May 14.
We are waiting on genetic testing results for BRAF, etc.
His oncologist (a melanoma specialist) seems to be for the “watch and wait” method with scans every three months. I know this is a common/acceptable approach, but I also know that there are trials out there for Stage 4 NED, though harder to find. His doctors seem quite certain that it WILL come back so I like the idea of the proactive approach of a trial, though I know it’s also possible to go through treatments, and their side effects, only to have it come back anyway.
My question is, what would you do? Watch and wait or pursue a trial?April 19, 2014 at 11:53 am #64141
This is tough, but why not wait for the results of the BRAF testing? Has he done IPI? You might want to start there as he needs to have that if he is going for the PD1 expanded access. He would also need to try the braf drugs if he is positive.. From what we know, when a tumor forms, it may have planted seeds along the way. These seeds may eventually grow into melanoma tumors. If these other drugs can prevent that, which isn’t a 100% for sure, then that would be the proactive thing to do. And PD1 has the highest potential to do that. But quality of life issues may be at play since all of these therapies have side effects. Maybe you should write a pros/cons list, see which feels the right way to go. Luckily we do have some therapies you can get without a clinical trial. Let us know how testing goes and what you are thinking about doing.April 19, 2014 at 11:04 pm #64142AnnieoParticipant Hi KatB,
Sorry we are meeting on a Melanoma Stage 4 Board … I am in a pretty similar situation to your husband. I had a lymphnode dissection in my groin, January 2013, and was diagnosed as Stage 3b.
This December (one year later) I had a recurrence – a firm lump in my thigh …. 2/3 months later again (Feb. 2014), I had another recurrence – appearing as a pigmented lesion on my skin, near my most recent scar.
Up to this point, I only ever had appointments with my dermatologist (though a melanoma team has always been discussing my case). When the most recent recurrence (February just gone) proved to be melanoma, I was referred to an oncologist to discuss treatment options. I was staged as Stage 4. I had a pet scan which was clear. Even though the scan was clear, the oncologist told me I was technically Stage 4 because of the recurrences. He pointed out that the time scale between my recurrences was reducing each time. Without me questioning him on this ( I go into shock mode at these appointments!) I understood that he was saying that another recurrence was expected to appear again very soon.. He discussed IPI with me and told me to take the week to think about starting it … I am lucky that I am BRAF positive. However, he wants to save that treatment for later.
One week later I met again with the oncologist. My sister (a pharmacist) was with me. To our surprise he told us that I would not be starting the IPI. (I had been all psyched up to start it) His reasons for not starting it were, that because the pet scan had been clear (NED), similar to your husband Kat, that it would be difficult to know whether the ipi was working for me or not, if it happened that my next scan proved again to be clear.
Also, I have rheumatoid arthritis and live with chronic pain daily – He told me that the ipi would more than likely greatly aggravate the arthritis. ( I see now that this was him taking my quality of life into consideration, as Catherine suggested above). I see this argument as being very valid. While having to think about starting on IPI, the thought about having to deal with even more pain than I am already in was terrible. My thoughts weren’t creating a pretty picture. However, my thinking was that I had no other choice but to start the drug… I know that in time I will have to deal with drugs v’s my arthritis but I am glad for now to be free of both.
My meeting with my oncologist was only two weeks ago. Like your husband Kat, it has been decided to go with the watch and wait treatment for me. I found it VERY difficult to deal with being told I had Stage 4 Melanoma and wasn’t having treatment, like everyone else appeared to be having. The thought didn’t sit well
However, now, two weeks later, I am feeling much better about things. I think that somewhere along the melanoma journey we all learn great skills to cope with living with the unknown. Life would be impossible if we allowed melanoma to take over our mind and lives.
The plan for me now is that I am to see my dermatologist every four weeks. It is good to have ‘a plan’. However, remember Kat that melanoma is unpredictable and plans can and should always change and be flexible. I already had another biopsy last week – so I have already seen my dermatologist before my scheduled appointment!
I am very confident in my team and I trust that they are doing what is best for me. If you are confident Kat, that your husband’s team will be proactive and deviate from any ‘plan’ as soon as something suspicious appears, then that is something. Obviously, ask lots of questions. I always have questions but it takes me a while to process them after each consultation. I have to write them down beforehand.
I was slow to post any message about my situation on this forum. Most people tend to talk about their drug treatments for Stage 4. I take comfort in knowing that I am not the only one with Stage 4 who is watching and waiting.
Catherine, I have to ask you your opinion on my situation, if you are reading this – You mentioned that IPI can stop the melanoma seeds from growing? I understand the seed concept and I have no doubt that I have melanoma seeds in my body. However, I am ‘watching and waiting’. Does this sit ok with you? I’m guessing that my oncologist truly is factoring my rheumatoid arthritis into my treatment plan…
I will be interested to hear what happens next with your husband’s treatment. I wish ye both strength and peace of mind at this time. I find things to smile and laugh about every day
Anne xxApril 20, 2014 at 3:12 am #64143
Anne and Kat,
I sympathize with your situation. I was actually in the same situation almost a year ago. At the time I was told by oncologists more than once Ipi was not an option for me because I was NED. Was told it didn’t matter if you were stage III or IV if you didn’t have present disease then you weren’t eligible for Ipi. I was told (I think on this forum) that you could get Ipi if you were stage IV NED so I’m still not 100% sure what is correct.
I was only NED for a couple months before I had a recurrence but during that time frame I actively pursured finding a clinical trial. At that time, and I imagine not much has changed, it was extremely tough to find a worthwhile clinical trial. I basically used clinicaltrials.gov and found about a dozen trials that I could possibly qualify for. Of those 12 I narrowed it down to about 6 and started making phone calls. I then narrowed it down to two sites and visited those two sites. The two trials I narrowed it down to was a Mage vaccine trial at Moffitt under doctor Weber and another vaccine trial at UVA under Dr. Slingluff. Both these Dr.’s are great researchers and physicians.
The “watch and wait” vs. actively pursuing an adjuvant treatment is a tough call with strong points to both sides. Knowing that it often takes many tries before you find your personal “silver bullet” against this disease I decided I wanted to take as many shots at it as I can.
Good luck to both of you and if you need any info on the two trials I mentioned above please let me know.
BrianApril 20, 2014 at 12:03 pm #64144
You didn’t mention your BRAF status. Basically, stage IV patients have three approved drugs without requiring a trial: IPI, Zelboraf (BRAF), and Braf/Mekinist (GSK braf) drugs. I know that IPI can cause havoc with auto-immune disorders such as arthritis. I also am thinking how would the PD1 affect your arthritis? I would ask. To get the PD1 in expanded access, you need to fail the available drugs, IPI and BRAF if you are braf positive. PD1 seems to have the highest long term response rate. So you might aim there. Of course, it should be approved shortly too.
Watch and wait is more acceptable for stage III disease where it is unlikely to come back. But I do know patients in stage IV who just did surgery and radiation for any recur and had good quality of life. It is good to weigh all of the scenarios and talk a lot with your doctors. I hope this helps.April 21, 2014 at 2:17 am #64145
You mentioned the 3 options in your post but I don’t think you mean to say those are available now to Kat and Annie since they are both currently NED. Maybe you can clear this up for me and others. If you don’t know the answer maybe there is someone from the advisory committee you could ask. What are the options for stage IV NED? My understanding is the options are “watch and wait” or adjuvant trial. I guess technically you could do interferon for what that’s worth. Thanks for any clarification you can give in this regard.
BrianApril 21, 2014 at 9:02 pm #64146AnnieoParticipant
Hi Brian & Catherine,
Catherine, I am thankfully BRAF positive but my oncologist will keep that option for a later time, because of the resistance that builds up towards it.
Brian, I am assuming the same as yourself, that Stage IV, NED can only watch and wait or possibly get on a drug trial. I did not ask about a drug trial yet but I’m thinking that with an autoimmune disease I might not be eligible.
Also, Catherine, you mentioned radiation for Stage IV, NED. This was not mentioned as an option for me. So far, all my recurrences have been below my groin. How would radiation to the leg work for me? That said, I only had a lesion removed last week from my left hip. I don’t have results yet.
I am meeting my dermatologist in two weeks time. I will be asking her about drug trials and radiation. While I’m typing here, is there anything else I could ask about?
Thanks for the info and support
AnneApril 22, 2014 at 12:42 pm #64147AnonymousGuest
There is a logic to do a “course” of the Braf or Braf/Mek drugs now while the disease is at a very low state. These drugs target the melanoma directly and seem to work quickly. Consequently as it quickly dies back, there may be a slug of antigens produced that attract the immune system.
What I’m suggesting is that there may be a window to knock any remaining disease back quickly to the point where the immune system can then eliminate it or significantly push back a reoccurrance.
There is a body of data that suggest taking “breaks” in Braf treat can significantly delay development of drug resistance by the disease. So, doing a single “course” of it (a month or two?) may have a low chance of developing resistance and you can still save it for later.
It would be an experiment though but could be an interesting topic of conversation with your oncologist.
Just a thought.
JeffApril 22, 2014 at 7:31 pm #64148
I did mean to mention those options. The only hold up may be the insurance company coverage. But our scientific advisory board said that indeed, they do prescribe the three approved drugs for stage IV NED patients. It just takes some work with the insurance sometimes. It is my understanding that if you have stage IV, there is likelihood of recurrence since the cancer tends to seed itself in other locations. Why wait for tumors to grow if perhaps one of these agents nips it in the bud? These are not black and white areas of therapy and certainly the answer lies somewhere in between. But yes, you can get a script for these drugs if you are NED.May 5, 2014 at 8:38 pm #64149
FYI for those that are NED and looking for treatment options. Found out today from my clinical trial coordinator that UVA is starting up a clinical trial combining one of Dr. Slingluff’s vaccines and Ipi.May 21, 2014 at 6:47 pm #64150dkmcParticipant Don was a total responder to Ipi, but 13 months later melanoma reoccured in his colon. He had surgery and after that was “NED” again. Because he was a total responder before he was able to do another round of Ipi even though he was “NED”. So I guess it depends. Also he had minimal side effects and was able to work through out his treatment. : )
Sure would be easier if there was this “perfect” pathway of treatment, alass there is not…so we weigh this and that and try and make our best decisions with the help of our “team”.
So now we wait…labs, PET every 3 months.
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