Dazed & confused but mostly scared

As scared as you feel right now, I was much worse off that you. I was afraid to even come here to ask questions. My diagnosis was confirmed in the month of December 2010. I had the WORST Christmas, New Year’s, and birthday that year. I sat on my couch for nearly a month and was the Queen of the “But What Ifs”. When I found I was sleeping only an hour or two at night I knew I had to do something so I asked my primary care doctor for help. She prescribed Xanax initially and when that wasn’t enough, she added an antidepressant. Those, along with some good friends helped me get back on track again. By February I had ditched both drugs.

Bottom line is that if you’re so freaked out that you are not able to sleep, don’t be embarrassed to ask your primary care doc for some help. Your body and mind need rest.

Once you have a treatment plan in place and you get used to that routine, the dust will begin to settle. The Opdivo trial sounds like a wonderful option. I wish it had been available when I was diagnosed. All I was offered was Interferon, Observation, and Clinical Trial. And, I was lucky that there even was a trial offered for Stage III patients. At that time, if you were Stage I or Stage II A/ B you had Observation only.

Folks who are Stage II because their tumor was very thick or had ulceration – BUT – had negative nodes – are at more risk for recurrence than Stage II peeps who had thinner lesions and no ulceration.

THEN – the second paragraph is saying that in the opinion of the author – (Sosman – whom I met with back in 2003 when he was running a vaccine trial that I chose not to participate in – a good call, as it was ended when the vaccine did no better than placebo) – that with the low risk of recurrence in patients who are Stage I or II – adjuvant therapy is generally not recommended because the treatment carries what in his judgement is greater risk of harm via side effects – than the risk posed by a melanoma recurrence.

Now – his statement – “…adjuvant therapy with checkpoint inhibitors or targeted agents has not been evaluated in this patient population, as high-risk node-negative patients were excluded from the phase III clinical trials evaluating nivolumab, ipilimumab, and dabrafenib plus trametinib …” is TRUE as it relates strictly to Stage II patients. However, as you can see in the posts I have made regarding adjuvant care for Stage III patients – it has not only been tested – it is now an FDA approved option and has been proven to decrease melanoma recurrence in that population.

Hope that helps. Bottom line, if one has to have a melanoma diagnosis – and I wish neither you nor anyone else did – you are in the best possible position. You had a lesion. But it is gone. Further, your nodes were negative. Your lesion was not ulcerated. Your lesion was a cutaneous one rather than mucosal or uveal. All good things in melanoma world.

So….I’m pretty sure the trial you might be offered is designed to answer that last paragraph’s conundrum. Does adjuvant therapy help folks who are Stage II, with fairly low risk factors, and low risk of recurrence? Further, is the risk of side effects from said therapy worth it given their low risk of recurrence?

I don’t know if you want to seek that sort of treatment. Honestly, I don’t know if I would, were I in your shoes. I think you are in a pretty good place where you are right this minute – considering. No need to be crying over statistics. Yours are good!!! Plus, you are living at a time when – should you wish it – looks like you can participate in a trial. More importantly, despite the odds against it – should you progress – you can attain viable effective melanoma treatment as early as Stage III!!! It exists. It is FDA approved. It works.

So – if I were in your shoes – I would read the primer I posted for you. Not because I wrote it, but because it, like all my posts, the material is broken down in simple terms so that it is not all about statistics. It is about treatments and vocabulary. That way, the next time you meet with docs, more of their language will be comprehensible. I would meet with the folks about the trial. Doesn’t mean you are agreeing to do it. Just means you are looking through your options. Again, being able to speak their language will make things better. Things get crazy pretty quick in melanoma world. But, you can do this. Melanoma has its own rules, language and nuttiness. But it is something you can learn to navigate and then learn to LIVE with.

Take care. Ask more questions as you have the need. Yours, c

The only significant change I see in your “prognosis” is that you might have a higher chance of getting in the arm of the trial being offered that is placebo vs treatment rather than observation only with the presence of ulceration as a risk factor. From my brief look at the trial link I sent you, it seems that they are dividing folks based on risk. So, I don’t know how you feel about this – or even trial participation generally – but really that is the only thing that changes in my thinking about your circumstance.

Hope that helps. Keep asking questions until you get all this straight in your mind. There are lots of smart helpful peeps here. Many of us have been there – done that. Including all the crazy learning curve and emotional roller coaster that goes with a melanoma diagnosis. c

PS. Two important thoughts about all the stuff on the web:

Treatments for melanoma radically changed from nothing to legitimate effective available therapies just since 2011. Most web findings do not reflect how melanoma patients fare NOW.

Apples have to be compared to apples. Most of what you see on the web is about Stage IV peeps before current therapies. YOU are not Stage IV. Valid information for YOU needs to about Stage II peeps. Given their decreased risk of recurrence – that is not usually the group that is being addressed.

For what it’s worth. c