dukester909

I primted the page out from your blog on trials and will read thru it again this week before I go next week. Thanks again!!!

Wow this is such good information. Everyone has been so helpful and I have been able to breathe for the first time in a while! When I go next week to learn more about the clinical trial I will report back here with what I learned and I hope you can help me decipher it enough to make a decision; I assume I won’t have to decide the very first time I go to hear about it?!

Cheers
Dukester

I would correct my initial post so that it shows the initial biopsy reported ulceration even though the WLE did not if I could but I don’t see a way to edit old posts here. Apologies for the mistake in the begtinning.
Dukesster

Awesome comment, I keep thanking you but I don’t have anything else but thanks

I see the mistake now and why I was confused about your response. The initial biopsy showed “Ulceration” at the top and “Ulceration: not present” in the lower detailed part. My oncologist called the pathologist to clear this up and it should have indeed showed Ulceration in the part that said “Ulceration: Present”. They did not give me a copy of the 2nd, corrected pathology report and I copied from the initial one. My apologies! So how does that change if at all what you wrote? Sorry again and thank you for your help!!!!!

But – mine was ulcerated. At least the initial biopsy done in the dermatologist’s office was. The WLE part did not show ulceration. So as I understand it, if any part of it was ulcerated, then it was ulcerated… is that not correct?

I guess I am on a roll today.. can someone explain this paragraph from this page to me like someone who is so new to this?

“High-risk, node-negative (stage IIB or IIC) disease — Patients without lymph node involvement but with high-risk features in their primary tumor are at increased risk for recurrence and disease dissemination. High-risk primary tumors include those that are >4 mm thick, or >2 mm thick with ulceration.

Despite the increased risk of recurrence, adjuvant therapy is not generally recommended because of the associated toxicity and the relatively favorable prognosis compared with those with lymph node involvement. In addition, 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 [5-8]. Patients may be offered enrollment in clinical trials evaluating adjuvant checkpoint inhibitor or targeted therapy as an alternative. ”

from:
https://www.uptodate.com/contents/adjuvant-and-neoadjuvant-therapy-for-cutaneous-melanoma

I should add I am not 100% certain the trial I will learn about next week is for Opdivo, I simply can’t remember what my oncologist said. It was a dazed & confused day all around. It may have been Prado, now that I have read other posts here. I will post more info after next week.
Dukester

Thank you for this. I don’t understand much of it, but when I find out more about the trial next week I will report back here.
Cheers

Thank you for this! The part of coming to the realization this isn’t going to be over overnight really hits home. I’ve been crying a lot as I am so scared. I am scared to go outside and much of my life happiness has come from doing things outdoors;; running, bicycling, gardening, surfing (yes I am from the beach originally.. 😮 ) I have been in state of paralysis many days since the original biopsy report came back.

I don’t know where else to look for other adjuvant treatment options for stage 2b; this one was the only one my oncologist recommended. I don’t think I can manage traveling very far right now with other things going on in my life, but I will make sure to ask after finding about this trial next week.

Thank you

Thank you for this. There is so much information in it that I can’t process it all right now. I’m not sure I am even processing where I am at with this right now. As soon as I start reading research reports or whatever and they start listing statistics and percentages about lifespan or recurrence I go numb. My wife had to tear me away from my phone yesterday looking at it all and ended up with me in tears. Thank you again for the support and info, I think I am going to have to take it all in slowly.
Dukester

Thank you for the reply. The last paragraph really hit home. I think I have been spending too much time doing just that and giving myself panic attacks over it. My wife told me yesterday that she wasn’t sure she even wanted me to look into the clinical trial if all I was going to do was worry the entire time if it was working. Don’t get me wrong, she has been a rock but like anyone she has her breaking point of listening to all my “but what if”..
Thank you again for this board and replying.
Dukester