Malignant melanoma

Once again, I've given too much information, but I offer it as a testament to NEVER GIVE UP:

My husband has Squamous Cell Carcinoma of the Spindle variety. This is just as aggressive as melanoma. He had a kidney transplant in 2012 and the cancer appeared in summer of 2014. SCC is associated with transplants (because of immuno-suppression) and particularly with kidney transplant (they don't know why kidney more than others).

In summer of 2014, he had a small lesion on top of his head and went to the regular dermatologist who scraped it and froze it. This went on for 2-3 months before the doctor sent him to a Mohs surgeon. In the meanwhile, new tumors had appeared in other places on his head. The first trip to the Mohs surgeon was a doozy. When finished, the doctor had me come into the room and stationed a nurse to stand behind me in case I passed out. There were 6-7 separate excisions - the smallest were the size of a quarter and the largest was about 2 1/2 inches in diameter. The dressing was to apply mupirocin and wadded Xeroform, covered by Telfa pads. The incisions required no stitches or grafts. They healed from the outside toward the center.
The tumors continued to come and my husband was having 2-3 removed by Mohs each week. After about 2 months the doctor recognized that it could not be controlled and he arranged a referral to Mayo Jacksonville.

On July 29, 2015 a surgery was done to resect a large portion of his scalp – approx. 5” by 7”. This was accomplished via regular surgery rather than Mohs. It is called a “free flap.” A section of left mid-back tissue was taken for the graft. This was topped with skin shaved from his left thigh which turned out to be the most painful of all. It looked and felt like a road rash, so we jokingly told the story of him wiping out on his Harley on the way to Sturgis. Immediately after the surgery to install the flap, he underwent 8 weeks of radiation. This has left the flap tissue subject to erosions which continue to this day. If he had not had the radiation, the flap would have indeed been a beautiful illustration of the skill of the plastic surgeons at Mayo. But radiation is the gift that keeps on giving, and giving, and giving. He wears a doo-rag in public.

He had one 1 ½” diameter surgery done by a local ENT where a graft was used. It healed well, but since there was nothing to replace the tissue which was taken, there is a depression in that spot.

The cancer spread to major organs, but thankfully in June of 2016 his local doctors met as a tumor board and decided to try Keytruda. As of May of this year, the PET scan was completely clear. It truly is a miracle.

Hi Joe.
Welcome to the group, glad you found us.
Good that others can assist in your questions as my journey starts with primary unknown. No indication on the skin of where it was, suspect the couple of blistering sunburns I had in the 70’s.

An aggressively growing lump in my breast was Melanoma. Mastectomy on September 2018. After the mass was removed (6cm) and identified, started Opdivo. Additional metastases (Mets) presented, Opdivo considered a fail for me. Moved to a Chemo+Keytruda combo, and had good results. My first clear scan came off chemo, remained on Keytruda. Second PET scan, body is clear, but they found 3 brain mets. Meet with neurosurgeon on Tuesday.

Be diligent, it is a nasty cancer!!

Good luck... Barb

Hi Barb,
So sorry about your Mets.
Yes, it is nasty!
My brother in law was what Sloan Kettering called a chronic cancer patient.
He began with a Melanoma on his leg.
It was large.
Soon after that he had another.
The surgeon explained that the cancer was a jumping bean.
Once open, it jumps to another site.
In all, he had 5 surgeries.
2 on the leg, 2 on the brain and 1 in the groin.
Sadly, they could not get it due to all the veins, muscles, etc.
Now this was over. 40 years ago.
He went to the Bahamas which was using immunotherapy with success.
He was too far gone.
Now they do have treatments, which the US did not have then.
Prayers...
Ronnie (GRANDMAr)

Surgery went well, they said the dermatologist got it all when she first removed the mole. I had about a 6"×2" excision that they were able to stitch shut, so no grafts. They also removed 2 nodes from my armpit to check them for cancer, all the tests came back negative. I go back to the dermatologist in November for my next full body check. Thanks for all the comments and stories, it is greatly appreciated!!!

@joe0818 Glad to hear the surgery went well for you! There are several remedies to help the scar heal nicely, one that several people suggested to me was Vitamin E. Break open a capsule and use the oil inside on the stitch line to help. It worked for me, not sure if you want to try it? I also used arnica montana, a homeopathic remedy, to assist with any bruising.
Ginger

@bdpp Checking in with you, to see how you are doing since your doctor's visit on Sept 14?
Ginger

I am just worried about it coming back, thank !!!

Whew, that seems so long ago. Thank you for checking on me, Ginger.

Writing from Mesa Verse National Park, our resting spot after 10 days at ABQ Balloon Fiesta. Wasn’t sure if we would make it to NM after mobility issues from my 9/20 craniotomy.

9/20 Craniotomy to remove 3cm lesion, 98% removed.
Conservative as near language and motor skills.
9/25 Gamma Knife to tackle the other 2 spots and to radiate the cavity.
2.5 hours of radiation.

After surgery, went through steroid hell, slept 5 hours in 5 days. Once off Meds started sleeping in 2 hour pockets. Good, but not sufficient. Rosen, massages, acupuncture, all tried all helped, some. Think getting away has helped the most.

Determined to make it to ABQ. We missed last year (#5) due to mastectomy and I was not going to let melanoma take another trip from me. Left Minnesota after my immunotherapy appointments on 10/3. We drive, actually my wife drove, as I could not drive. Took a walking aid with a seat just to be sure I had a place to rest. Didn’t like taking it, but thankful that I did.

Graduated to quarterly PET and MRI scans, and I have decided on getting a port.
Head back to Rochester tomorrow....

Living life to the fullest!!

Barb

@bdpp Oooh, the balloon festival! I have that on my bucket list. Several years ago I was at an annual kidney patient education day, and the gal next to me had just returned from it. I bet the joy and excitement that was in her eyes, was the same type you had! Good for you, thinking ahead for comfort in watching; don't be hard on yourself, that was smart to have an aid-with-a-seat thing. You have had quite the journey, and thank you for letting us know you are doing okay.
Ginger

@joe0818 It will be constant vigilance the rest of your life. And that is okay, remember you are worth it!
Ginger