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Thu, Sep 12 2:00pm · Malignant melanoma in Cancer

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.

Mon, Aug 19 7:00pm · Feeding tube falls out. in Head & Neck Cancer

My husband had the kind with a bumper on the inside. Thankfully he has no need for feeding tube anymore. He had it because of radiation + the radition destroyed his salivary glands. He got down to 116 lbs. He has learned to take tiny sips of water with each bite, is back to 140 lbs and doing well.

Mon, Aug 19 3:54pm · Feeding tube falls out. in Head & Neck Cancer

We never had that problem, but I would certainly tell the doctor who placed it.

Fri, May 3 11:55pm · Stage 3 CKD in Kidney & Bladder

Depends on what is wrong with your kidneys. Polycystic disease can take years before it shows as a problem in your labs. My husband’s symptom was high blood pressure. A consult wouldn’t hurt.

Fri, May 3 4:51pm · Stage 3 CKD in Kidney & Bladder

The PET scans have been clear since he started on Keytruda in June 2017. If it wasn't for all the damage done by surgeries and radiation before we started a systemic approach, he would be in fairly good shape. However, we tried everything else in an attempt to save the kidney.

In summer 2016, they discontinued the transplant drugs because the immuno-suppression was feeding the cancer. We knew it was only a matter of time before the kidney failed. He began dialysis in March 2017 and the Keytruda finished it off in June. I thank God for the Keytruda. He would be gone otherwise.

Fri, May 3 4:22pm · Stage 3 CKD in Kidney & Bladder

Immunotherapy killed my husband's transplanted kidney. It was a choice between the cancer (the result of immuno-suppression after the transplant) or living on dialysis. Squamous Cell Carcinoma is common in KIDNEY transplant patients – they don't know why. When you get a transplant, you MUST stay out of the sun and see a dermatologist regularly – an informed and tenacious dermatologist. My husband's dermatologist was neither of those things. My husband's form of SCC is spindle cell, and it is as aggressive as melanoma.

I find the complete reversal of dietary guidelines interesting. Before, and for the two years after the transplant, it was water, water, water. Now it is 32 oz per day, and that includes the water in food.

Fri, May 3 11:59am · Stage 3 CKD in Kidney & Bladder

My understanding is that a fistula and a graft are two different things, with the fistula preferred. https://www.azuravascularcare.com/infodialysisaccess/types-of-dialysis-access/

Thu, May 2 12:59pm · Stage 3 CKD in Kidney & Bladder

My husband's tunnel catheter was in his upper right chest, not neck. It had to be kept dry and the dressing changed each time of dialysis, but it was not painful. It is supposed to be a temporary solution when dialysis is needed and there is no fistula. At the time they put it in (March 2017), they did not expect him to live very long. In June of 2017 he was put on Keytruda, which has kept the cancer at bay – it truly is a miracle drug.

His fistula was put in last June. The operation did not take an hour or so, and was outpatient. They did not start using it until November.