Second Stage 4 treatment for us is now Yervoy

[missyrand]

Short synopsis of where we are in treatment of Melanoma

3.5 years ago my husband felt an odd spot on the top of his head about the size of a pimple but blue/black in color. Nothing in the lymph nodes. It was staged 3B melanoma. Surgically removed.

3 months later he had developed in-transit melanoma via lymphatic system on his scalp near the edge of his hairline. 35 rounds of Keytruda later (infusion once every 3 weeks) with very low side effects (arm rash, some itching, very dry mouth that has done damage to his tooth enamel) and clear PET scans for a number of months, he had distant metastasis on his thigh. This advanced him to Stage 4. Surgical removal of the up close to the surface BB size tumor, and we decided to continue with more Keytruda and scans. At about 42 rounds he had recurrent BB tumors (2) at the thigh incision despite clear margins from initial surgery. Surgical removal, stopped all infusions, sought second opinions and went into "waitful watching".

New BB size melanoma on shoulder. Surgical removal and sought second opinions with researchers who approach melanoma very differently (BRAF specialist, Combo immuno specialist, Yervoy specialist, and considered TIL, but he's not a candidate because tumor load is too small) and dug into literature again for Wild type melanoma with inital/ partial response to Keytruda/ other immune therapies. There is a new tumor spot on the abdomen, and now one at the shoulder incision line, too. We are leaving these in place to be able to monitor effectiveness of the next treatment.

Came back around to what our Melanoma specialist oncologist recommended and started Yervoy 4 weeks ago. My husband had his second infusion Friday. He developed itchy skin all over in week 2 after the first infusion which is well managed by topical steroid cream and/ or antihistamine by mouth. So far no changes in the two visible tumors just under the skin. The docs are conceptualizing these just under the skin tumors as part of an emerging area of research for people who have been partial responders to immunotherapies in melanoma. It's like the major organs have been protected (evidenced by clear PEt scans), but the top layers of the skin are acting like "melanoma safe havens". The medical term for this is Oligometastasis.

Anyone else out there having this experience of Oligometastisis? If so, sure would appreciate hearing how you all are approaching this.

Keeping one foot in front of the other,

Missy

[strawberryjam]

MissyRand

You are so supportive of everyone else as you walk through this journey yourself . I do admire the breadth of your knowledge of this disease and your persistence in seeking out the best specialists for your husband . I had never heard of these BB sized tumors and learned from your description . I wish you both all the best. May this treatment be very successful. Leave no stone unturned as you move forward . Thanks for all you do .

[missyrand Ambassador in reply to strawberryjam]

Thank you very much Strawberryjam

[tinaneric]

Has any of the drs mentioned T-VEC It was suggested to me but it would have only been 25% effective because my tumor is rather big in my pelvis. I’m looking into TIL trial. I haven’t been approved yet.

[missyrand Ambassador in reply to tinaneric]

My husband washed out of a Tvec like trial at Georgetown this week due to elevated liver enzymes.

He is BRAF 599, a Melanoma rare Wild type. Are you a V-600 genetic type?

There are current trials for TVec and TVec in combo trials. For help in looking at all trials you can get free navigation help on the Melanoma Research Foundation site or Melanoma Research Alliance.

My husband tried the TIL trial at Virginia Commonwealth University in Richmond VA. Basic information is on the drug sponsor site for Iovance under melanoma. It is a brutal protoc so they assess for general health to tolerate the chemo therapies before the transplant and IL2 doses immediately after transplant. If there are any brain metastasis that is a participant exclusion

I wish you well in exploring next resources.

Peace

Missy