dmturner

GREAT NEWS!!

I just printed out the clinical trial info.  I have progressed on Yervoy, Yervoy & Opvido and on the clinical trial I am on now.  I am going to MD Anderson next Sunday, to get ready to do TIL or harvest a tumor.  But I still need to be on some kind of therapy during that 3 months.

That is great news!  I have been following you since I was diagnosed last July 2016.  I had also opted out of CLND. 

I opt out of CLND in the groin.  I have had 3 lymph nodes removed and have mild lymphdema.  Also, the cancer has spread but not to any of the lymph nodes that would of been removed.  I mean, really all the way in my left collar bone area.  It is a tough decisions and my doc really pushed. 

No looking back!!

Best of luck.

I just finished my 4th combo on Thursday.  Minimal side effects.  I think or it seems I am a slow responder.  My tumors in my lymph nodes did swell or grow after my 2nd dose right before my 3rd which was put off for a week cause of vacation.  But after the 3rd dose they seem to shrink after about 7 days..  I was in so much pain in my abdomen, pelvic area I was in pain every time I lift my right foot.  I do have intransit lesions that have not shrank but hoping they will before my Opdivo only infusion in 3 weeks.   Doc has order scans before next part of treatment.

I did get my 1st Explanation of Benefit and the Yervoy is crazy expensive and the insurance has not paid that part as of yet (1/15/2017), waiting on more detail information from cancer center.  $93,000.00 us$ for total of one treatment.

So would this be similar to what I am experiencing?  I have acral lintiginous melanoma.  Primary on bottom of right heel.  Right before 4th 10 mg-Yervoy notice a couple spot close to primary.  They called them satellite tumors/cells.  Had it cut out WLE.  Stopped Yervoy.  Then in Dec.  did PET scan lit up pelvic, abdomen, collar bone, heel.  Now I have 10-15 lesions close to the I guess the secondary (look like blisters but positive for melanoma).  They said no more cutting.  I started Opdivo/Yervoy combo and it seem to be like a fertilzer.  But they said I might be a slow responder and to see if they go down.  Not yet.  I have 3 treatments thus far.

Donna

Just searched LDH on this site.  I am rather confused why my onc didn't not mentioned my elevated levels 261 which over the the 251 high end at my last infusion on 1/26/17.  I am a bit scared.  I do have lesions popping up close to the primary on my right heel/ankle.  I did Yervoy 3-10 mg and had a reoccurence.  Then did a PET scan and lit up in mutliple lymph node areas.  Started Opdivo/Yervoy on 1/5/17

Just searched LDH on this site.  I am rather confused why my onc didn't not mentioned my elevated levels 261 which over the the 251 high end at my last infusion on 1/26/17.  I am a bit scared.  I do have lesions popping up close to the primary on my right heel/ankle.  I did Yervoy 3-10 mg and had a reoccurence.  Then did a PET scan and lit up in mutliple lymph node areas.  Started Opdivo/Yervoy on 1/5/17

Just searched LDH on this site.  I am rather confused why my onc didn't not mentioned my elevated levels 261 which over the the 251 high end at my last infusion on 1/26/17.  I am a bit scared.  I do have lesions popping up close to the primary on my right heel/ankle.  I did Yervoy 3-10 mg and had a reoccurence.  Then did a PET scan and lit up in mutliple lymph node areas.  Started Opdivo/Yervoy on 1/5/17

I started seeing Dr. Cowey in December 2016.  I was seeing Dr. Mennell  (consulting with Dr. Cowey) but when I became stage 4, saw him and stayed with him with Dr. Mennell recommendation.  I just did my 2nd infusion of Opdivo/Yervoy.  I did 3-10 mg of Yervoy from July to Aug 28th and had a reoccurence close to the primary.

Good Luck!!

Well not as successful as you.  I started a clinical trial May 1st and actually showed response in the first couple 6 weeks scans.  The last scan showed mixed results and that was 3 weeks ago.  My tumors have grown or the ones that I can physically feel/see.  Groin, under collar bone and the intransit lesions on my right foot.  So I will be heading to MD Anderson in Houston next weekend.  To evaluate, brain MRI and harvest a tumor for TIL. Plus, talked about a some other options will the tumor hopefully grows TILs.

Be Brave!!

I opt out of the CLND of right groin.  Diagnosed in June 2016.  Right heel, 4 mm deep, ulcerated, 10 mitosis.  Had the Mohs procedure July 6, then PET & brain MRI negative, then SLNB came back positive.  Started Yervoy 10 mg got thru 3 treatments no side effects.  Went in for follow-up in Oct for heel and noticed a couple spots by primary, biospy them and bingo melanoma.  Had WLE on Nov 1 for that location.  In Dec.  was going to start Keytruda, had CT scan negative, then PET scan lit up in pelvic, abdomen, collar bone, heel and groin.  Decided to do Opdivo/Yervoy combo started on Jan 5th.  Before that I saw my derm and I notice another similar spot close to now the secondary and it came back as positive.  Well no I have a whole cluster of lesions on my foot that we are using as a gadge to see if the combo is working.  Well the positive LN have gotten bigger and causing pain.  Did the 3rd treatment and waiting to next Wednesday to tell the doc if I notice shrinkage, stay the same or progression.

It would of not matter about the CLND cause the positive LN are not in the right groin area.

I have minor lymphdema from the 3 that was taken out.