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- July 21, 2017 at 1:53 am
Hi, all — I wanted to introduce myself.
My husband, David (age 71), was diagnosed with a melanoma on his back in May — Breslow Depth 6.75 mm, mitotic rate 4 per mm3. He had a wide excision and SNLB in June with clean margins and no lymph node involvement. During a follow-up visit in June with our oncologist, the onc felt a new lump between the surgical site and the lymph nodes — we were sent for an ultrasound and then needle biopsy, which came up positive for metastatic melanoma, making him Stage IIIC. No other suspicious areas showed up in a CT scan. Our onc and our 2nd opinion onc considered the new site to be in transit to the lymph nodes. The new site was removed with clean margins and we're now trying to figure out the next steps.
It seems the 2 primary options are the soon-to-close trial comparing Ipi and Pembro, and the upcoming trial comparing Ipi and Nivo alone and in combination (though I read on another thread that they may be dropping the IPI alone arm). Our greatest concern is that my husband had a bad reaction to prednisone when he received it after having gum surgery. We're meeting with our 2nd opinion onc (at Georgetown Lombardi) again on Monday — he's asked David to look into what the binding agent was for the Prednisone — hoping to find that his reaction was to the binding agent, not the prednisone itself. Georgetown is participating in both the existing trial and the new trial; our initial onc (at Inova in No. Va) will be participating in the new trial but isn't participating in the existing Ipi/Pembro trial.
With David's possible allergy to prednisone, we're particularly worried about the side effects from Ipi. If it's true that the new Ipi/Nivo trial will only have two arms, it looks like he'd have a 50-50 chance of getting the Ipi in either trial, I wonder though, if he winds up being randomized into the Ipi-Nivo combination arm and has intolerable side effects, whether that would prevent him from getting Nivo alone at a later date because of the difficulty of proving which treatment he reacted to.
If it can't be determined that David can tolerate prednisone, one other option is to choose no further treatment at this time, with very close follow-up — if his melanoma recurs, he might be eligible to go straight to Pembro or Nivo.
It's tough sorting it all out — I'm hoping we'll have a better sense of direction after seeing the onc on Monday, but I'm only guardedly optimistic about that!
We welcome any thoughts/advice you might have.
Thanks,
Elaine
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- July 21, 2017 at 5:18 pm
Hi Elaine,
I'm wondering if your husband can tolerate one of the other steroids commonly used, dexamethasone perhaps … Regardless, how fortunate for him that the in-transit met was found before it reached the lymphs!
You sound so well versed about his condition, treatment options, etc. that I have to say "hats off to you" – this disease is so complicated that I usually have a medical dictionary handy when I read reports 🙂
And, the rest of that aside – you have definitely come to the right place to have your questions answered, conduct research, share and vent. This board is a goldmine of information. I am not a mel sufferer, only a caregiver, so I can't speak medically about his treatment plan but I can tell you this – immunotherapy is one of the best developments in the cancer treatment world and certainly for melanoma, so there's every reason to be optimistic.
I wish you both the very best of success with whatever treatment option your husband's docs go with!!
Barb
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- July 21, 2017 at 6:53 pm
Thanks, Barb – I'm hoping we can work out the steriod issue — maybe in consultation with a pharmacologist.
I've had a lot of experience with cancer jargon, unfortunately — I'm an 4-time cancer survivor (no melanomas, though I've had 2 basal cells in addition to the 4 other cancers — NED with respect to all 4). Internet groups have been my lifeline since my first diagnosis in 1996 when these types of support groups were really just beginning. So it's been pretty natural for my husband to turn over most of the management of his diagnosis, etc. to me. Nevertheless, I'm still not sure what questions we need to ask — we're just taking it more or less day by day.
Elaine
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- July 24, 2017 at 5:10 am
When comparing these two trials… know that the ipi only arm (20% chance) of the nivo/ipi trial BMS 915 is going to be removed at some point soon. They have emailed providers about it. I would be hesistant to start the ipi 10mg arm of the pembro trial if your husband does poorly on prednisone. Perhaps consider the nivo trial as the better bet as when they remove the ipi 10 mg arm… they plan to put those patients on nivo. Which means for a short while you could be on ipi10 mg and not know it… blinded study and all… by they are going to move on removing the ipi 10mg arm from the 915 hopefully by September.
Be sure that your oncologist knows about this announcement. If you want to read more look in the "stuck between two trials thread".
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- July 24, 2017 at 5:20 am
Oops, looks like your already found that thread and have read it, I was reading too fast and jumped down past a paragraph. Regardless the remaining ipi dose in the nivo/ipi arm of BMS 915 will be at 1 mg as opposed to the standard care level of 10 mg per infusion. From what I've read it is after multiple infusions of ipi and at a higher dose is what matters.
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