Cancer Still Growing

ManOfSteelMan

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.

SuzJ

I think you need

a serious dose of *hugs*

 

Sue

caregiver wife

Treatment for mets

Sorry you are have such a hard time!

Husband was on a Carbo/Taxol every three weeks for recurrence of primary site and mets to lung.  In and out of treatment for 7 years now.  On PEG tube six years.

Long story short, after about 18 months of the above treatment, he has now been in remission 5 months!!

He is getting up in years, but still goes on long walks around the neighborhood.

One never knows what the future holds.

 good shall triumph over evil

Crystal

Ladylacy

Treatments

I can only say I am sorry to read what you are going thru but have been there with my husband.  It is a hard road and if you want to fight than that is great.  My husband after the 3rd reoccurrence said enough was enough and elected not to undergo further treatment.   He started out with laryngeal cancer, then esophageal cancer and then lung cancer.  For him the only thing offered was chemo and was told would only prolong and could possibly hasten his time.  He too was on a feeding tube (and was for the 5 years he fought this horrible disease), had bouts of nausea which for him were controlled with medication.  When he started his battle we were told that head and neck was the worse radiation treatment there was and the doctors were right.  

Wishing you peace and comfort

ManOfSteelMan

Radiation

Hi Ladylacy,

   I was told the same thing about the radiation. Two years later I still have the burn marks and my neck is hard like raw potatoes restricting my head movement some. It was the worst thing I had ever went through. There were times when I was in the mask that I had to throw up and they had to stop and get me out of it in a hurry. This time no radiation but they are going to give me an anti-nausea medicine (Compazine?) to go with what I'm taking now which is Ativan and I'll take those round the clock. Ativan is used for ADHD but one of the effects is it controls mild nausea which is why I take it now as needed. Starting tomorrow it will be every eight hours along with the other, or maybe just the other every eight hours and this one as needed. I'll ask again.

   If I feel like it is too much and not worth it I will stop. I'm living with my daughter now and she said she'll support whatever decision I make. I've got questions lined up for tomorrow and begin treatment. My brother is the only other family I have and I've talked with him about it too. I've got a couple of close friends but haven't mentioned that there isn't a cure, only prolonging.

  

Sinus2016

ManOfSteelMan

Thanks for sharing.  To date my experience puts me just over a year of diagnosis and Oct 2016 was the toughest month I ever had but I still belived in sweet ‘16. (That 2016 would be sweet for business, life etc.) While I am currently diagnosed as cancer free I really wonder what the definition of cancer free really is 1yr, 5yr etc?  I have chosen to live my life for today and enjoy my family, work, whatever I choose to do or not to do.  I hope that you will do the same, my thoughts & prayers will now include you and I admire the courage you’ve shown in sharing your story. In my eyes you are the Man of Steel Man!

ManOfSteelMan

Sinus2016 said:

ManOfSteelMan

Thanks for sharing.  To date my experience puts me just over a year of diagnosis and Oct 2016 was the toughest month I ever had but I still belived in sweet ‘16. (That 2016 would be sweet for business, life etc.) While I am currently diagnosed as cancer free I really wonder what the definition of cancer free really is 1yr, 5yr etc?  I have chosen to live my life for today and enjoy my family, work, whatever I choose to do or not to do.  I hope that you will do the same, my thoughts & prayers will now include you and I admire the courage you’ve shown in sharing your story. In my eyes you are the Man of Steel Man!

Thanks Sinus

I had my first new treatment today and have already been working on a personal project, a hobby if you will. I used to be a software engineer by profession before I was removed from the payroll last year. There is an investigation underway against the company but that's neither here nor there. I haven't done any programming in a long while so I found something I was working on last year and decided to tinker around with it and it helps. I like to challenge myself and grow and this is just one of the ways.

So, I got my cape and tights, found a phone booth. Then of course the men in white with the nets caught me and I ended up back in the asylum eating a jigsaw puzzle. But now that I'm back on my meds, I'm back to programming, creating languages, playing music, creating my first web comic (ten months in the making), virtual reality, and whatever else. I have a wide variety of interests, I just have to get the interest going which has been difficult as of late.

I don't have my books (they are packed up) as we are moving in a few days. The new owner is moving in and our new house isn't quite ready yet so we have to move into a basement in a neighbor's house for about three, maybe four weeks. But I will have my laptop.

ManOfSteelMan

caregiver wife said:

Treatment for mets

Sorry you are have such a hard time!

Husband was on a Carbo/Taxol every three weeks for recurrence of primary site and mets to lung.  In and out of treatment for 7 years now.  On PEG tube six years.

Long story short, after about 18 months of the above treatment, he has now been in remission 5 months!!

He is getting up in years, but still goes on long walks around the neighborhood.

One never knows what the future holds.

 good shall triumph over evil

Crystal

Hi Crystal,

Hi Crystal,

   How does your husband shower with the PEG tube? I was told (but I was also pretty groggy after surgery) not to shower with it or submerge it. So I've been cleaning with wipes and shampooing with those preformulated caps. It would be nice to feel running water again.

Thanks,

Randy

swopoe

ManOfSteelMan said:

Hi Crystal,

Hi Crystal,

   How does your husband shower with the PEG tube? I was told (but I was also pretty groggy after surgery) not to shower with it or submerge it. So I've been cleaning with wipes and shampooing with those preformulated caps. It would be nice to feel running water again.

Thanks,

Randy

I can answer this. My husband

I can answer this. My husband was told to use some of that press and seal wrap that you get at the grocery store. Put it over the PEG site and take a shower. They even gave him some at the hospital.

caregiver wife

ManOfSteelMan said:

Hi Crystal,

Hi Crystal,

   How does your husband shower with the PEG tube? I was told (but I was also pretty groggy after surgery) not to shower with it or submerge it. So I've been cleaning with wipes and shampooing with those preformulated caps. It would be nice to feel running water again.

Thanks,

Randy

Shower

Randy

Glad Swopee jumped in on this one as husband has always liked baths anyway.   Six years and counting, we are just careful to keep as much water as possible away from site.

Husband wrote code for Apple in the earliest days.  I imagine things have changed since then!  There he goes!! Off for his second walk of the day!

Best Wishes,

Crystal

ManOfSteelMan

caregiver wife said:

Shower

Randy

Glad Swopee jumped in on this one as husband has always liked baths anyway.   Six years and counting, we are just careful to keep as much water as possible away from site.

Husband wrote code for Apple in the earliest days.  I imagine things have changed since then!  There he goes!! Off for his second walk of the day!

Best Wishes,

Crystal

Yes Crystal,

Yes Crystal,

   Things have changed since the Apple IIe (I'm guessing on the model). Still, I look back on those days as I had so much fun with the TRS-80 Model I and the little things I learned to do.

   My daughter bought some kind of plastic sticky thing (comes in four) to put over it. I'm looking forward to a shower, maybe even a bath. We are moving day after tomorrow to a bigger house and I'll have my own bath so this will be nice.

   Second walk? I'm so doped up with anti-nausea (I had an awful bout of it all Friday night) that I take a different one every four hours switching back and forth. I'll be talking to them in two days when I report for my next treatment and give them a run down as to how my week went.

   Thank you Swoopie for swooping in and answering. I'm going to be careful and also try the wrapping method.

Thanks to both of you,

Randy

caregiver wife

ManOfSteelMan said:

Yes Crystal,

Yes Crystal,

   Things have changed since the Apple IIe (I'm guessing on the model). Still, I look back on those days as I had so much fun with the TRS-80 Model I and the little things I learned to do.

   My daughter bought some kind of plastic sticky thing (comes in four) to put over it. I'm looking forward to a shower, maybe even a bath. We are moving day after tomorrow to a bigger house and I'll have my own bath so this will be nice.

   Second walk? I'm so doped up with anti-nausea (I had an awful bout of it all Friday night) that I take a different one every four hours switching back and forth. I'll be talking to them in two days when I report for my next treatment and give them a run down as to how my week went.

   Thank you Swoopie for swooping in and answering. I'm going to be careful and also try the wrapping method.

Thanks to both of you,

Randy

Off Topic

Hubby says his AppleII is still in the garage.  My first computer was the TI-99. First 16 bit processor!!  I was so proud of my blinking Christmas tree!!  When I first heard "giga-byte" I thought my head would explode!  

Hang in there, Superman.  This, too, shall pass.  

Crystal

Klingels

showering

My husband was told he could get the PEG tube wet. He just takes a regular shower and even cleans the outside of the tube.