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Tue, Jul 21 12:56pm · Meet others living with Head & Neck Cancer - Come introduce yourself in Head & Neck Cancer

Hi Joe, My husband had squamous cell carcinoma – spindle variety – which started as a lesion on the top of his head and metastasized.. He had many surgeries and radiation (the last of which destroyed his saliva glands). He had to get a PEG tube in the middle of the last round of radiation because he got down to 116 lbs from 140 lbs. When his salivary glands were destroyed, he thought he'd have a tube for the rest of his life. He learned to use tiny sips of water as saliva replacement, and the tube was removed 6 months later. None of the products sold as replacement came even close. Keep trying different things, because you just never know what will be a solution to your situation.

As to that current situation, get a Vitamix or Blendtec blender (medical discounts) and start using REAL FOOD, at least as a supplement to a formula. This was critical to my husband's come back. Do not be deterred by the push-back you will receive from doctors and dieticians, because they don't CONTROL it. Suggest you head over to a Facebook page called Adult Tube Feeding, where you will find more tips than you could imagine.

He also responded to Keytruda, and the PET scans were nothing short of miraculous.

Sun, Feb 23 4:45pm · Meet others living with Head & Neck Cancer - Come introduce yourself in Head & Neck Cancer

Yes, we thought it was the radiation, but then found that it was EARWAX. Clean the ears first!

Sun, Feb 23 4:05pm · Meet others living with Head & Neck Cancer - Come introduce yourself in Head & Neck Cancer

My husband has SCC – spindle. Research shows that the SCC is frequently found in kidney transplant recipients about 2 years in. My husband received a living donor transplant in Oct 2012. The immunosuppression encourages the cancer growth.

It started as a quarter sized lesion on the top of his head summer 2014. His regular dermatologist sent him to a Mohs surgeon. The Mohs surgeries became an almost weekly affair. The Mohs surgeon arranged for us to come to Mayo. In the summer of 2015, the top of his scalp was resected and replaced with a flap at Mayo J'ville. The cancer kept coming. More surgeries and lots of radiation. Finally the surgeon at Mayo said "no more surgery. You have to have a systemic approach, otherwise we are chasing ghosts."

Our focus had been on saving the kidney, because we were told from the beginning that chemo might kill the kidney, and immunotherapy would definitely kill the kidney. Again, the transplant drugs were feeding the cancer, so it Aug 2016 he stopped taking them. We knew that only a very, very small percentage of people can retain the transplant without the drugs. It was only a matter of time. In Sept 2016, he began Erbitux and we came home. The Erbitux had limited sucess on the surface tumors, but the cancer metastasized to include tumors in the liver and diaphragm. His transplanted kidney began to fail in December 2016, and by March 2017 we trained for home hemo-dialysis. We did that for 1 1/2 yrs and then he went in-center because I just could not do it anymore.

In May 2017, a tumor board made up of local doctors met and they decided to try Keytruda which was approved for head and neck cancers. It was a miracle. The PET scans have only shown "pop up" cancers since then. The first of this year he was switched to Libtayo. Libtayo is basically the same as Keytruda, but specifically designed for squamous cell cancers. It was not available when he began the Keytruda.

My husband has not had any detectable side-effects from Keytruda or Libtayo, because they use his own immune system to fight the cancer. Dialysis, while scary in the beginning, is something which 400,000 people live with every day. The pain and general debilitation which my husband deals with are the result of all the surgeries and radiation which lead up to the systemic treatment he has now. I'm not a medical professional by any means, but I encourage you to pursue the systemic treatment if that is what your oncologist recommends.

Sep 12, 2019 · 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.

Aug 19, 2019 · 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.

Aug 19, 2019 · Feeding tube falls out. in Head & Neck Cancer

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

May 3, 2019 · Stage 3 chronic kidney disease (CKD): What specialists do I see? 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.

May 3, 2019 · Stage 3 chronic kidney disease (CKD): What specialists do I see? 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.