- February 20, 2020 at 11:19 am
As many off you, I feel lonely during a difficult time of waiting for results.
My history: 1992 first melanoma, 2008 second melanoma.
2009 spread to the lymph nodes (with spreading in surrounding fat tissue).
2009, Participated in a double-blind trial with 10 mg/kg ipi, however I was in the placebo group.
So basically, I am an untreated Stage IIIb patient without recurrences.
Had 3 moles removed since 2009. Two on my request, they were ok. One as the doctor saw it, this was atypical.
Last week another mole was removed. I’ll have the results next week. And I’m freaking out.
I do not want to scare my friends and family. Most new friends have no clue what it is.
One of my best friends is in the hospital with a burn out and she totally freaked out when she heard. I ended up comforting her.
But I am scared. The numbers are pretty much against me, right?
My last scan (in the trial) was in 2016, after that my doctors told me I’m too young for regular scans (46). If the cancer is back, I will request a scan.
Any advice from you on having scans? Shall I ask anyway? I know this beast can always come back, but as I’ve been clean so far, I don’t know if I should ask or not.
Also, if you have any advice on how to get through the next week?
I am just curious. In your profile, you mention that you are on the ipi side of the trial since you got colitis, increasing fatigue and a rash however in your current post, you say you were in the placebo group of the trial which means you were basically not treated. Do I understand this correctly?
- February 20, 2020 at 1:27 pm
As far as your questions, I would wait for the results before requesting CT scans.
Waiting for results is a mental game. We are all wired differently and what works for some doesn’t work for others. Personally, I would stay low in my own world until the results come in. Guide yourself by the following motto….Until it is proven to be something, it is nothing. In the meantime, busy/occupy yourself and most importantly your mind with things you like to do. Do some time consuming and challenging mind games. I am not saying it’s easy by no means but you must try. Your best friend is having a crisis of her own so she is in no way able to help you deal with your anxiety. If necessary speak to a professional or keep wenting on this forum. All of us understand what you are going through. Many including myself go through this every three months when we have a CT scan. Although I have no control of the outcome, I can control by choosing how I respond. Human mind including our consiousness is an amazing thing and the key is to try and remain positive regardless of the outcome. Remember, we often worry needlessly.
I am hoping you receive wonderful results and are able to help your best friend.
Thanks for your reply Melanie.
- February 20, 2020 at 1:50 pm
Yes I am trying to keep busy, which is some days just easier than others. Luckily I am super busy at work, so that keeps my mind off things.
And I like to help my friend, which takes my mind of my own problems. It’s just those moments in between that sometimes make it difficult.
And you are right, i updated my history. Yes, I am officially untreated (they unblinded the trial last year)
My last mole removal was in 2015, my last scan in 2016. I am glad to say the whole melanoma was not always on my mind. Until last year I was under the impression I had received ipi.
Its scary to be back in the waiting game
ed williamsParticipantHi there Swissie, not 100% sure on this one but to the best of my knowledge and memory on the early ipi trials there were no placebo groups, by that I mean you would get ipi or chemo or both and if you were getting just Dacarbazine then you would get placebo for Ipi but you would have still gotten a drug in this case standard of care chemo. Do you remember the name of the trial? Most of the early ones of that time had a “CA 184- _ _ _ naming pattern with the phase 3 trial that led to ipi being approved having this code CA 184-024 where ipi was compared to dacarbazine (DTIC) which was a standard of care chemo drug. So the side effects that you had could have been from the chemo!!! Here is a link to early trials and figure 4 and table one show phase 3 trial and design for Ipi called CA 184-024. Best Wishes!! Ed https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3910157/
- February 20, 2020 at 2:49 pm
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