› Forums › General Melanoma Community › Scared, discouraged + need advice
- This topic has 15 replies, 4 voices, and was last updated 14 years, 3 months ago by
NYKaren.
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- December 28, 2011 at 7:19 pm
Hi everyone.
I literally just walked back into my office after having two punch biopsy stitches removed at derm's office. The nurse removed the stiches (the doc is out) so I asked her for the biopsy results–both showed "melanoma in dermis." There was no other description, they were just small spots….satellites that keep popping up all on the side of my face near where the original larger site is.
Hi everyone.
I literally just walked back into my office after having two punch biopsy stitches removed at derm's office. The nurse removed the stiches (the doc is out) so I asked her for the biopsy results–both showed "melanoma in dermis." There was no other description, they were just small spots….satellites that keep popping up all on the side of my face near where the original larger site is.
Tonight I have PET and MRI of the brain scans, so I know we'll know a lot more after that. But I was just so discouraged. I just finished my second course of IL-2. There was some talk of doing a 3rd round to "hold me off" until I can get into an anti-PD1 trial. The docs had thought I'd be able to get into the Curetech one that just started, but Curetech didn't include Stage III unresectible. Damn.
So my question is this–if I have a significant spread of cutatenous satellites after completing the second course of IL-2, WHY would I want to subject myself to a third? After my first course, some small spots on my lymph nodes cleared up, but that may have very well been a late response to Ipi. Does this make sense to anyone?
I know I'll know more when I see Dr. Wolchok after tonight's scans, but I'm just so down. I think that deep down inside I thought they'd come back benign…even though Dr. Halpern actually said that he thought they were melanoma because they were raised. Lesions that are flattened after these treatments can just be leftover pigment, but raised is bad.
Anyway, thanks for letting me vent; all advice welcome, unless you're going to tell me to stop whining, cuz I already know that I need to. (I felt like I was hit in the stomach after reading about TracyLee last night–I think we all did.) At least I'm still here fighting the good fight.
to borrow from Charlie,
Cheers,
karen
- Replies
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- December 28, 2011 at 8:04 pm
Oh Karen, you have every right to whine, moan, whatever gives you the slightest lift. You are right that you will know more when you discuss tonight's scans with your doctor. I'm sure he will give you a lot of insight on the where's and why's of possible treatments. Are there other Anti-PD1 trials that are possibilities? For right this minute, you are doing all you can. Has something worked for you before when you were down? I don't know if you meditate, but concentrating on and appreciating each breath has helped us through some terribly stressful times. For what it's worth, I'll keep my positive vibes headed in your direction. You can know that a lot of people are pulling for you. I'm one of them.
Hope
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- December 28, 2011 at 8:04 pm
Oh Karen, you have every right to whine, moan, whatever gives you the slightest lift. You are right that you will know more when you discuss tonight's scans with your doctor. I'm sure he will give you a lot of insight on the where's and why's of possible treatments. Are there other Anti-PD1 trials that are possibilities? For right this minute, you are doing all you can. Has something worked for you before when you were down? I don't know if you meditate, but concentrating on and appreciating each breath has helped us through some terribly stressful times. For what it's worth, I'll keep my positive vibes headed in your direction. You can know that a lot of people are pulling for you. I'm one of them.
Hope
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- December 29, 2011 at 12:40 am
Hi Karen,
Here is a Anti=pd1 trial by Merck. It does not state which stages qulaify for the trial. Part B is for Mel patients. You might want to look into other sire location that will be opening:
http://clinicaltrials.gov/ct2/show/NCT01295827
Good luck & you are entitled to feel disappointed.
Mary
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- December 29, 2011 at 12:40 am
Hi Karen,
Here is a Anti=pd1 trial by Merck. It does not state which stages qulaify for the trial. Part B is for Mel patients. You might want to look into other sire location that will be opening:
http://clinicaltrials.gov/ct2/show/NCT01295827
Good luck & you are entitled to feel disappointed.
Mary
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- December 29, 2011 at 12:40 am
Hi Karen,
Here is a Anti=pd1 trial by Merck. It does not state which stages qulaify for the trial. Part B is for Mel patients. You might want to look into other sire location that will be opening:
http://clinicaltrials.gov/ct2/show/NCT01295827
Good luck & you are entitled to feel disappointed.
Mary
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- December 28, 2011 at 8:04 pm
Oh Karen, you have every right to whine, moan, whatever gives you the slightest lift. You are right that you will know more when you discuss tonight's scans with your doctor. I'm sure he will give you a lot of insight on the where's and why's of possible treatments. Are there other Anti-PD1 trials that are possibilities? For right this minute, you are doing all you can. Has something worked for you before when you were down? I don't know if you meditate, but concentrating on and appreciating each breath has helped us through some terribly stressful times. For what it's worth, I'll keep my positive vibes headed in your direction. You can know that a lot of people are pulling for you. I'm one of them.
Hope
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- December 31, 2011 at 12:40 am
Hi Karen,
What did Dr. Wolchok tell you about your scans??
Even if Curetech will not take stage 3, Here is a Anti=pd1 trial by Merck. It does not state which stages qulaify for the trial. Part B is for Mel patients. You might want to look into other sire location that will be opening: I understand there will be lotsof seats & location sites available.
http://clinicaltrials.gov/ct2/show/NCT01295827
Good Luck & keep us posted?
Mary
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- December 31, 2011 at 12:40 am
Hi Karen,
What did Dr. Wolchok tell you about your scans??
Even if Curetech will not take stage 3, Here is a Anti=pd1 trial by Merck. It does not state which stages qulaify for the trial. Part B is for Mel patients. You might want to look into other sire location that will be opening: I understand there will be lotsof seats & location sites available.
http://clinicaltrials.gov/ct2/show/NCT01295827
Good Luck & keep us posted?
Mary
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- December 31, 2011 at 12:40 am
Hi Karen,
What did Dr. Wolchok tell you about your scans??
Even if Curetech will not take stage 3, Here is a Anti=pd1 trial by Merck. It does not state which stages qulaify for the trial. Part B is for Mel patients. You might want to look into other sire location that will be opening: I understand there will be lotsof seats & location sites available.
http://clinicaltrials.gov/ct2/show/NCT01295827
Good Luck & keep us posted?
Mary
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- December 31, 2011 at 6:53 am
The small spots on the lymph nodes could either have been a late response to Ipi or could have been due to the IL-2 or could have been due to the IL-2 enhancing the Ipi. YEs, any of these possibilities makes sense.
I am wondering if your new spots fall into the catagories covered by the new cremes being tried to fight tumors in the dermis. Here are some sites to look at.
http://www.femail.com.au/skin-cream-melanoma.htm
Revolutionary skin cream offers new cure hope for recurrent melanoma
http://www.sciencedaily.com/releases/2011/04/110426102424.htm
Topical treatment may prevent melanoma
Melanoma Treatment with Topical Cream Looks Promising, Page 2 of 2 – Associated Content from Yahoo! – associatedcontent.com
You know more than anyone else about your body's ability to take another round of the IL-2. Generally 3 rounds (6 weeks of IL-2), provide the best results.)
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- December 31, 2011 at 6:53 am
The small spots on the lymph nodes could either have been a late response to Ipi or could have been due to the IL-2 or could have been due to the IL-2 enhancing the Ipi. YEs, any of these possibilities makes sense.
I am wondering if your new spots fall into the catagories covered by the new cremes being tried to fight tumors in the dermis. Here are some sites to look at.
http://www.femail.com.au/skin-cream-melanoma.htm
Revolutionary skin cream offers new cure hope for recurrent melanoma
http://www.sciencedaily.com/releases/2011/04/110426102424.htm
Topical treatment may prevent melanoma
Melanoma Treatment with Topical Cream Looks Promising, Page 2 of 2 – Associated Content from Yahoo! – associatedcontent.com
You know more than anyone else about your body's ability to take another round of the IL-2. Generally 3 rounds (6 weeks of IL-2), provide the best results.)
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- January 1, 2012 at 5:33 pm
Hi Jerry,
One doc that I consulted with (for something that turned out to be a false alarm) mentioned DPCP and suggested that I go to Australia to get it. I will talk w/Halpern (derm.) when I see him in 2 weeks & to Wolchok as well.
Of course it's not available here, it only costs $1.00 per week!
As for the IL-2, I feel like all these spots popped up after the last round–maybe I'm not a responder after all. Maybe the first round response was because it came on the heels of Ipi.
You know they're now saying that reinduction of Ipi is the wave of the future–that I'd go for in a NY minute!
Thanks for the input and Happy New Year. You've always been a great support.
karen
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- January 1, 2012 at 5:33 pm
Hi Jerry,
One doc that I consulted with (for something that turned out to be a false alarm) mentioned DPCP and suggested that I go to Australia to get it. I will talk w/Halpern (derm.) when I see him in 2 weeks & to Wolchok as well.
Of course it's not available here, it only costs $1.00 per week!
As for the IL-2, I feel like all these spots popped up after the last round–maybe I'm not a responder after all. Maybe the first round response was because it came on the heels of Ipi.
You know they're now saying that reinduction of Ipi is the wave of the future–that I'd go for in a NY minute!
Thanks for the input and Happy New Year. You've always been a great support.
karen
-
- January 1, 2012 at 5:33 pm
Hi Jerry,
One doc that I consulted with (for something that turned out to be a false alarm) mentioned DPCP and suggested that I go to Australia to get it. I will talk w/Halpern (derm.) when I see him in 2 weeks & to Wolchok as well.
Of course it's not available here, it only costs $1.00 per week!
As for the IL-2, I feel like all these spots popped up after the last round–maybe I'm not a responder after all. Maybe the first round response was because it came on the heels of Ipi.
You know they're now saying that reinduction of Ipi is the wave of the future–that I'd go for in a NY minute!
Thanks for the input and Happy New Year. You've always been a great support.
karen
-
- December 31, 2011 at 6:53 am
The small spots on the lymph nodes could either have been a late response to Ipi or could have been due to the IL-2 or could have been due to the IL-2 enhancing the Ipi. YEs, any of these possibilities makes sense.
I am wondering if your new spots fall into the catagories covered by the new cremes being tried to fight tumors in the dermis. Here are some sites to look at.
http://www.femail.com.au/skin-cream-melanoma.htm
Revolutionary skin cream offers new cure hope for recurrent melanoma
http://www.sciencedaily.com/releases/2011/04/110426102424.htm
Topical treatment may prevent melanoma
Melanoma Treatment with Topical Cream Looks Promising, Page 2 of 2 – Associated Content from Yahoo! – associatedcontent.com
You know more than anyone else about your body's ability to take another round of the IL-2. Generally 3 rounds (6 weeks of IL-2), provide the best results.)
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