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Husband diagnosed with tonsil cancer: looking for tips and support
Head & Neck Cancer | Last Active: Jan 12 8:51am | Replies (176)Comment receiving replies
Thank you for your comments. Can you share what the common drug being used you referred to? My 70 year old husband was only offered Cisplatin and when we questioned if there was another drug the Oncologist said no. It is most likely because Cisplatin is the only SOC at our Canadian Cancer Clinic. Looking back, I wish he had been more persistent in alternate drug therapy. When I questioned if the decision to decline the Cisplatin offered was sound, because we were told by the ENT surgeon that we only get one shot at treatment, he shut me down and said it was my husband who had the final decision. My opinion did not count and my concerns were not heard. It would be nice to know what the most current treatment is at the bigger centres. When the biopsy comes back with HPV positive, the outcomes are better. In our case, at 70, the 35 rounds of radiation was his only treatment, due to the risks associated with Cisplatin at his age. It is not that the drug is not good, but the side effects for an older individual is something to discuss with your Oncologist. Robotic surgery also was not offered. At times, we both felt like we needed to push harder for treatment. We are not through this yet, as his first PET scan 3 months post treatment still showed some activity. He is scheduled for a second PET scan which will be 6 months post treatment. We are Canadians who are faced with a crumbling health care system. You are so right. It is paramount for one to take the reins of this pursuit. My husband is a passive patient, and for me it has been a difficult journey. I would have pushed harder if it had been me, and it has created a strain on our relationship for reasons I won’t go into here. A cancer diagnosis is a huge test in all areas from the first steps taken. Keep a journal, do your research and please encourage the patient to get the best treatment available. The brilliant research and the treatments coming should be available for everyone.
Replies to "Thank you for your comments. Can you share what the common drug being used you referred..."
Kisquali is one of several. I don’t like to address specific meds as that should be up to a physician, which I am not.
My husband is receiving treatment for mucosal melanoma in his right sinus cavity. He was referred to a doctor in St. Pete, Florida, who specializes in sinus issues including cancer. My husband had two surgeries and then he was referred to the UF Proton Institute in Jacksonville for 33 proton treatments and weekly infusions of Cisplatin. In my limited research, I have found the use of Cisplatin with radiation treatments to be the standard. The oncologist administering the Cisplatin explained that the drug makes the radiation more effective. I would ask your doctor if research bears this out. The dosage usually given with radiation is 1/3 to 1/4 of the regular dosage. My husband is 76. My belief is that is very important to receive treatment from an institute that knows what the latest research says about treatment. My husband's cancer is so rare that it is difficult to find any research dealing with it. So, we looked for doctors and institutions that had experience with head and neck cancers. Once my husband finishes at the Proton Institute, we will seek out an oncologist with expertise in mucosal melanoma if we can find one nearby. If not, we are discussing going to a cancer center where, hopefully, the oncologists there are aware of the latest treatments and research involving this type of cancer. I hope this helps. And yes, the whole thing is a considerable strain. At this point, it is also a full-time job.
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Sorry to hear of your challenges. We have Canadian friends and have heard good & bad stories about your health care. It’s not much consolation, but all the most current research and treatments are not always available in the USA either. Providers seem unwilling to direct patients to other centers and only seem to focus on what they know or have to offer. Insurance companies also have a huge hand in what patients can get. Insurance can deny treatments for various reasons that have nothing to do with care or the patient. Unfortunately in the USA, health care is a money making business and the patient’s needs are often secondary. We got a second opinion and are happy we did. You sound like a great caregiver and your husband is blessed to have you in his corner. Hang in there.