yulkame

Thank you. 

My mom passed away on Saturday. 

Thank you very much for this reference, Celeste!

An article where Dr. Weber lists combination therapies:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/12/the-future-for-melanoma-treatment.html

I just wrote a post with questions regarding T-VEC or intralesional IL-2 injections..https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/anyone-tried-t-vec-advanced

If someone has any information, please let me know!

Thank you!

Yuliya

Thank you Cindy. Update so far: got the third ippi/nivo injection on August 9th. Bloodwork yesterday showed platelets down to 18, hemoglobin back down to 7, as before the ted blood cells transfusion. Yesterday started feeling pain in the sternum when taking deep breaths and moving. Can only stand up for a few minutes, then feels really weak and needs to lie down with ice on forehead. We came back to the urgent care now for xray of chest, etc.

Hi Cindy, Thank you so much for the link! I was trying to look into NF1 yesterday, but so far didnt find anything concrete.. We don't know yet whether to try the 3rd ippi/nivo injection. I hope that doesn't make things worse. I hope things work out for your mom! 

Yuliya

Hello, thank you for your kind words. I will send you a note. Yuliya

Hi Cindy, Thank you once again! Yes, that makes sense regarding the side effects.. Where are you guys located? I will search for the American counterpart of this study (the Australian one is not recruiting participants yet.) Our additional problem is that with platelets so low (24 latest), we can't participate in any trials..they usually require at least 75 and usually 100..

Many thanks,

Yuliya

Hi Cindy,

Thank you so much for writing back and providing this list. Is there a link to that Australian study where you found this list? I would like to read the entire reference. 

Why did you guys decide not to try Ippi and Nivo after Keytruda seemed to have failed?

My best wishes for a good PET scan! Those are nerve-wrecking every time. 

Yuliya

Hi Cindy,
Thank you so much for your reply! Yes, my mom also thought it was a blister that she had scratched by accident. However, note that besides the lymph node, the PET Scan looked clean 8 months and then 10 months after the blister had become apparent… 
Yes, the doctors did an Impact genetic analysis and didn't find any mutations that are relevant for treatment..
Here is what is says:

"Negative for somatic alterations in the clinically validated panel:
Positive for the following somatic alterations in the investigational panel:
PTP4A1 (NM_003463 – 6q12) Amplification (Fold Change: 20.1)
ETV1 (NM_001163147) exon8 p.N195S (c.584A>G)
NF1 (NM_001042492) exon 10 p.I377Tfs*9 (c.1130_1133delTTGA)
RFWD2 (NM_022457) exon 13 p.L485R (c.1454T>G)"

Do any of these match what they found in your mom?

Best wishes for your mom as well!!!

Thank you!

Yuliya