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Meet others living with Head & Neck Cancer: Introduce yourself
Head & Neck Cancer | Last Active: Sep 21 5:27pm | Replies (538)Comment receiving replies
Coleen:
Thanks for the response!
All were in the head, neck and upper chest. All, including melanoma, have been successfully excised until the Spindle came along. It was first diagnosed and excised in the inside front of the right ear. It has spread to the other side and skin adjacent to the ear. I have had four excisions on that ear, all types cancer excisions have used MOHS.
I have had MRI, CAT and PET (oncologist Dr. will share results of PET next week). Having upper GI 5th. I have: Splenomegaly (over sized spleen, MRI showed some other abnormalities) with the notation (Splenectomy) in my Dr's records. The skin surgeon who did the graft has emphasized that a repeat of cancer in that area would require removal of a good portion of the ear (no sweat, just get it all). The latest "strip search" last week (4 per year) had two biopsies -- one behind the right ear (from my observation and experiences it is another active site), results should come any day.
I do not keep "score" on excisions, just types.
All of the test results have not come in, nor has a decision been made about long term treatment. At this point my decision is to have my oncologist direct all treatment.
My personal opinion: The sooner diagnosed and treated, the best chance for success. Physical and mental health are directly related -- keep activities and relationships that are pleasing. Keep exercised and body strength up. Do NOT take any "natural" substances without Dr.'s approval.
If anybody has any experiences or successful treatment of this condition, I would appreciate any input. I know the cause of mine, have had successful removal of repeated various types for 18 years until the Spindle came to visit.
Cancer does not run in my family nor any of my cousins. I have gotten paranoid and spooked now by the Spindle! :<)
Truman
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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.