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November 28, 2013 at 2:53 am #21689jenwithonenParticipant
My father was recently diagnosed with Stage IV melanoma and I have found this forum to be a wealth of information in the past few weeks as I attempt to learn as much as possible to help him with treatment decisions. I am hoping that this wonderful group might be able to provide some guidance for us right now. Thank you Catherine for your initial email.
Briefly, my father’s history:
– long history of SCC, first Stage II scalp melanoma found in May 2013. PET, brain MRI negative. sentinel nodes negative.
-Nov 12th – PET scan showed 6 lung mets, largest 10mm. both lungs, not able to resect. Brain MRI negative. Negative for all mutations upon testing scalp tumor.
-History of prostate CA diagnosis March 2012, detected early. Successfully treated with proton therapy at Loma Linda June-Sep 2012 with PSA 0.5 now.
We have been working with oncologist at OHSU in Portland, OR. He was working to get him into the Nivo/IPI combo trial. Found out this afternoon that they will not accept him. Stated that the prostate CA treatment will keep him out. He says that his history will likely keep him out of most all clinical trials. He offered us the following options:
1- IPI treatment – he states 10-15% response, not recommending
2- IL2 treatment – also states 10-15% response
3- CTrial at nearby Providence medical combining IL2 with radiation.
He has spoken to the Dr. running this CT and states that he would be accepted. His opinion is that this is the best option because IPI would likely mean steroid treatment that would then make him ineligible for the IL2 later and is not happy with response rates.
We are certainly early in our learning curve, and I am doing much of the research for him. These recommendations don’t seem to be meshing with my reading so far. We were of course hoping to get him into a PD1 trial.
My questions are:
-has anyone had experience with CT acceptance with a history of prostate CA treatment?
-where should we be looking to get a second opinion at this point – we are not sure that we are comfortable with these recommendations or know how to best decide given the above options
He is in OR, but I am in CA and we are willing to do what it takes to have him travel for the best available treatment.
Thank you all and hope everyone has a lovely Thanksgiving with their families and friends tomorrow.
~JenNovember 28, 2013 at 1:21 pm #63088Catherine PooleKeymaster
I would appeal the decision about prostrate ca treatment being an exclusion. He didn’t have anything systemic and PD1 really is his best option of those you mentioned, with Yervoy being next. You might try the investigators at a few other centers, such as UCLA or UCSF, the Angeles Clinic in Santa Monica also has many trials. I will look again at that trial’s description to see why that would be exclusion. Your father is fortunate to have you on his research team! Happy Thanksgiving.November 29, 2013 at 3:01 am #63089JonathanParticipant Hi, I got caught in the same nutty disqualification for anti-PD1. The exclusions include any treatment for another neoplasm (cancer) within the prior 2 years. I had had an ambiguous prostate cancer biopsy a year prior(subsequently changed in a second biopsy to negative) which was enough to qualify as a “treatment”, and hence a disqualification within that time frame. I think this sort of nuttiness is especially true of BMS clinical trials, but there it is. Almost any man over 65 these days is likely to run into a problem like this.
I hope you have better luck henceforth- you deserve it. This is one of those unfortunate situations I think where the drug company is making unnecessarily stringent (one could say ridiculous) qualifications for trial patients who are willing to do almost anything to get a promising drug.
Also, I am really shocked that your father’s oncologist is recommending against Ipi, and in favor of that combination treatment. It’s true, anti-PD1 looks even more promising, but it’s not FDA approved yet, and we’ve got to wait for that probably until 2015. I had a very good 2 year success with Ipi beginning about 3 years ago (I posted a long record of my treatment on MIF – just search Jonathan). It’s FDA approved, and he’s quoting a low figure of response for Ipi. I’m wondering if he’s being scared off by its cost and financial risk to him (the oncologist). The wholesale cost is $120,000. You might find it interesting to read a recent post on Celeste Morris’ blog, Chaotically Precise Life, Love, and Melanoma, where she talks about how Ipi, after FDA approval, is not being widely prescribed in community oncology centers because of its financial risk, not because of its lack of proven efficacy – a truly pernicious situation. I hope your father has good health insurance – if so, there shouldn’t be a problem.
JonathanNovember 30, 2013 at 7:21 am #63090kylezParticipant
Second opinions are indispensable in my experience for situations as complex as stage 4 melanoma treatment plans, like the ones being discussed for your Dad. It’s reassuring (especially when facing expensive and potentially harsh treatments) when both teams agree. And if the 2 teams disagree, you get to weigh their rationales and make your own decision.
I’m on the west coast too. Since 2011 I’ve been under the care of both oncologists at the UCSF melanoma clinic and have been very happy with the care and treatment I have received, from both oncologists.
In the year prior, I was seen at an HMO, and for that year I went to UCSF to get second opinions. FWIW I got IL2 at the HMO (before IPI was approved) and IPI at UCSF (just after IPI was approved).
I could give you my thoughts on IL2 and IPI (and radiation) but each case is unique and I only know my own case. But I think that your Dad would be very well served by getting a second opinion at one of the facilities Catherine mentions, like UCSF where I go.
Good luck with your Dad’s treatment.
– KyleNovember 30, 2013 at 3:11 pm #63091kylezParticipant
Also, even though there are newer drugs on trial, that shouldn’t diminish the reasons why IPI was considered a major breakthrough, just a very few years ago.
In 2011 I was disappointed, like Jonathan, that I couldn’t get into a PD1 trial (disqualified because of brain metastases). But I believe now that getting IPI after neurosurgery and radiation — given that it’s a percentage play like every other melanoma treatment — is why I’ve been doing well and not had a follow-on recurrence for over 2 years now, knock on wood.
Maybe there was some kind of ‘priming’ by previous IL2 treatment (which cleared out my lungs completely in 2010), I’ll never know. And maybe my lungs are still clean because of the follow-on IPI treatment in 2011, I’ll never know that either.
Best, KyleDecember 1, 2013 at 7:21 am #63092jenwithonenParticipant
Thank you Catherine, Jonathan and Kyle for your helpful responses, especially on this holiday weekend. I hope you all were able to enjoy a lovely turkey day.
This gives me some good directions to head in. We will definitely inquire about appealing the decision. I do believe his oncologist fought hard to get him in and was denied by BMS, but it is certainly worth continuing to pursue while looking at other options.
So great to hear of your good experience with UCSF. I am also in NorCal so this would be an ideal location for treatment if he came to stay with me. Will be contacting them first thing Monday morning along with UCLA and a few others.
If a PD1 trial is not in his future for now, at least we can feel more comfortable with treatment decisions after a second opinion and a review of our best options.
I feel so blessed to have found this forum and appreciate all of your help as we begin this journey. Will keep you all updated on how things progress.
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