Cancer Still Growing

Hi everyone,

   I'm new to this board but not to the cancer. I'm about to explain the road I've travelled for about four years and where I'm headed. I wanted to sort of vent to others who understand.

   Four years ago I had a swelling under my arm. I went to the doctor first thing the following morning. He thought it might be viral but just in case he would have me go and get an ultrasound. A day or two later one grew under the other arm so I went ahead and got it. He referred me to an oncologist. That scared me right there.

   He examined the area and said that it was probably nothing to worry about but just in case he was going to have a biopsy and I'll be fixed up in a few weeks. Of course, the biopsy came back with Small Lymphocytic Lymphoma (I know this is a Head and Neck cancer forum, I'm getting there) stage III. Don't worry though, it's slow growing and I'll probably not need chemo for years if ever. But just in case, let's get a bone marrow biopsy.

   It came back with Chronic Lymphocytic Leukemia stage IV. But not to worry, it's slow growing and will take years before I'll need treatment. In fact, I'll probably out live it.

   Next year, I'm in for treatment and he referred me to another oncologist. The nodes all over my body had grown. This treatment would take several months but was relatively mild. No weight loss, no hair loss, just some fatigue, night sweats and other minor things.

   Hooray, I'm cancer free! The thing is in remission and there isn't a sign of it... until a few months later. Now I'm on some oral sort of chemo thing when a lump appeared on my neck that kept growing. I was sent to an ENT.

   The ENT does a biopsy. I have a cancer on the base of my tongue, a squameous cell carcinoma, stage IV. We need to get on Cisplatin and radiation. I have Head and Neck cancer. It was brutal. I have partial hearing loss (I was a musician but can't hear all the notes now although sometimes I'll still play), lost forty plus pounds that I can't seem to gain back, some things like water tastes terrible, and the numbness in my hands and feet still linger.

   I had uncontrollable nausea. No medication would help and I would end up in the hospital three times in three months as they tried to get it under control and rehydrate me. This was two years ago. After treatment I'm cancer free again, hooray! That is until eight months later. I'm having difficulty swallowing and the lump on my neck is back. I go for another biopsy and a PET scan. The cancer returned, and spread to my liver. There are six large tumors and several small ones in it.

   I went on a mild immunotherapy for the past year, almost to the day now. At first it stopped growing. Then it started shrinking! Hooray again!!! Until now. The tumors are growing again and I'm about to go on a combination of Cetuximab and PackLitaxel. They can't put me on Cisplatin again and all the other cocktails use it. This is the only one left.

   In two days I start the new treatment. They are going to give me a double shot of it at first to get things going and then afterwards, weekly, I'll go for regular treatment. There is no cure.

   The list of probable side effects is large and I wonder how much time this is truly going to buy me and if it is worth it. I didn't think to ask about a prognosis. If I see the doctor Thursday I may ask. I don't know though. I'm a fighter. I'm just a little down because I've had so many hopes dashed. Everytime something is in remission it comes back with a vengence. I've had a feeding tube in my stomach (a PEG) for a year now. Swallowing still is too difficult. I miss things like pizza. I rarely drink anything either as I usually can't finish it. So three times per day, two boxes at a time, I'm putting in something called Jevity into a tube.

   My fatigue, nausea, once in a while a fever, night sweats, I still have regardless of what I'm on. Some days are better than others of course. Now the idea of all this hitting me again, just... I don't know. At least no radiation but the chemo itself will be brutal again. Oh yes, I now get migraines although it may not be related to anything but they don't help matters.

   I'm about to take something for nausea. It is something not usually given but in my case it works for the mild bouts. The standard nausea medication doesn't work for me. Anyway, I'm going to give it a few minutes and go for a final feeding for the night. I think I'm done writing. It's depressing but I do stuff to cheer me up and get my mind off of it when I can.

   I've rambled enough. Thank you for reading and if I can answer any questions that others may have, especially those who are going through some of this for the first time, I'll be glad to help.