Just Starting the Journey

debbiejeanne said:

questions
Greend, congrats on the grandchildren!!! I have 5 and they are so much fun. I'm sorry you're having trouble again. I am also very glad that you are honest about what is happening to you, this forum is how I learn. You will be in my prayers. I have a few questions if you don't mind. You said things show up around the 7-10 yr mark and that you are currently being treated, is your cancer back or are you being treated for the effects from the cancer you had? What type of cancer did you have and did you only have rad or rad and chemo? I only had the rad but I'm experiencing new side effects weekly. I have been thinking that I will be back to being me at my 6 mo mark but now I've changed my mind. That's me tho, I originally expected to be back to normal 4 mos after my last treatment. My last rad trmnt was 10/22/09.
I hope things turn around for the better again for you. thanks again for your honesty.
God Bless,
Debbie

Debbie questions
No the cancer has not returned. I had tonsil cancer and in May 2010 it will be 13 years since last treatment. I was treated with radiation and chemo at the same time. I went through everything you read about here, carried (still do) a water bottle everywhere I go, total dry mouth, weight loss following treatment followed by a reasonably stable life since then. Several years ago - 3 or 4 - I suddenly lost all feeling in my chin. It felt like you do after the dentist gives you novacaine. This was coupled with some periodic tingling feelings (like you hit your funny bone) going from the chin area to the right ear lobe. Not painful but uncomfortable. I ended up at a neurologist and his assessment was that I had had experienced a TIA (mini-stroke). They did the brain scans and there was no damage (not a lot to work with up there ) so life went on coupled with an asprin a day. Then about two years ago my voice started getting very raspy. I thought it was probably from some anesthesia I'd had two weeks earlier for some minor shoulder surgery I'd had but when it didn't get better I went to my ENT. The ENT told me my left vocal cord was paralyzed and may or may not get better and left it at that. I was also having a bit more difficulty than usual swallowing and I found my ability to pronounce certain sounds was impaired; the hard "G" sound for example so I decided to get a second opinion. My family doctor referred me the the Kirkland Clinic in Birmingham Alabama. I was lucky in that the doctor I have has experience treating radiation patients, something that is not common. He told me that he sees a lot of patients around the seven year point after treatment with symptoms like mine. The numbness in the chin is a direct result of radiation nerve damage to two nerves in the face - good news it wasn't a TIA, bad news it was still there, damage to the back of my tongue was causing the pronunciation problems and it was causing the increased difficulty in swallowing by having further constricted my throat. It also was the most probable cause of the paralyzed vocal cord. Since I have lost so much weight he also advised me to either gain weight or he will insert a feeding tube so I have until May 27th to be at 175 lbs - wish me luck.

I asked what could be done and he basically said, "nothing". My comment was , "so you are telling me I'm just in the $h^% pile", He laughed and said "yes your are in the pile but you on top of the pile, I have many patients much worse off than you."

I am also lucky in that it happened to me at 13 years rather than 7.

Hope this doesn't scare anyone but these are the facts and being educated may help you in the future.

Greend said:

Debbie questions
No the cancer has not returned. I had tonsil cancer and in May 2010 it will be 13 years since last treatment. I was treated with radiation and chemo at the same time. I went through everything you read about here, carried (still do) a water bottle everywhere I go, total dry mouth, weight loss following treatment followed by a reasonably stable life since then. Several years ago - 3 or 4 - I suddenly lost all feeling in my chin. It felt like you do after the dentist gives you novacaine. This was coupled with some periodic tingling feelings (like you hit your funny bone) going from the chin area to the right ear lobe. Not painful but uncomfortable. I ended up at a neurologist and his assessment was that I had had experienced a TIA (mini-stroke). They did the brain scans and there was no damage (not a lot to work with up there ) so life went on coupled with an asprin a day. Then about two years ago my voice started getting very raspy. I thought it was probably from some anesthesia I'd had two weeks earlier for some minor shoulder surgery I'd had but when it didn't get better I went to my ENT. The ENT told me my left vocal cord was paralyzed and may or may not get better and left it at that. I was also having a bit more difficulty than usual swallowing and I found my ability to pronounce certain sounds was impaired; the hard "G" sound for example so I decided to get a second opinion. My family doctor referred me the the Kirkland Clinic in Birmingham Alabama. I was lucky in that the doctor I have has experience treating radiation patients, something that is not common. He told me that he sees a lot of patients around the seven year point after treatment with symptoms like mine. The numbness in the chin is a direct result of radiation nerve damage to two nerves in the face - good news it wasn't a TIA, bad news it was still there, damage to the back of my tongue was causing the pronunciation problems and it was causing the increased difficulty in swallowing by having further constricted my throat. It also was the most probable cause of the paralyzed vocal cord. Since I have lost so much weight he also advised me to either gain weight or he will insert a feeding tube so I have until May 27th to be at 175 lbs - wish me luck.

I asked what could be done and he basically said, "nothing". My comment was , "so you are telling me I'm just in the $h^% pile", He laughed and said "yes your are in the pile but you on top of the pile, I have many patients much worse off than you."

I am also lucky in that it happened to me at 13 years rather than 7.

Hope this doesn't scare anyone but these are the facts and being educated may help you in the future.

thank you
Greend, it is a litte disheartening but I would still rather have the truth. thank you for telling it like it as.
God Bless,
Debbie

Pino Tea said:

Getting enough calories
Do you know if Boost is available in the UK and if so do you buy it from the Pharmacy? Since April last year, Cancer patients in the UK get free prescriptions and Ensure is available on prescription from my Onco, but if Boost is also available this sounds like the better option. Does everyone eventually need to take food supplements or do some patients manage to survive on liquidized foods.

Ensure vs Boost
As Dazey pointed out that she preffered boost to ensure. I am just the opposite. I am 3 months out my last chemo was 11/30/09. I preffered the vanilla as chocolated tasted terrible which is really bad for a chocholic. I used ensure as a inpatient after my 2nd week of chemo/radiation it became hard for me to swallow. As mentioned the hospital I was at wanted 2300 calories a day. The chemo I was on inpatient was 5FU and played havoc with mouth sores which didnt help the eating process. The diflucan helped a little. Good luck to you
Dave

Kent Cass said:

sportsman
Like you, the PEG necessity was realized with me by week #2. 15+-months. Still have the PEG and Port. I lost 17% of my prior weight, but have gained it all back! Our Chemo differed, and I only had 31 full head and neck rads (20 places/session), and 3 partials. Do wonder about what C you had. Do like hearing you are 3 years the Vet, sportsman. Hope you will tell us your experience.

kcass

God, I hated that noise!
That popping fizzling clicking noise from the machine just about drove me nuts.
The other thing that I remember (and you have to be of a certain age to identify with this) is the sound that the big heavy door to the chamber made when they closed it behind them and left me alone in the room.
Remember the opening to "Get Smart"? Every time I heard that door close the "Get Smart" theme song would start running through my head. Which, of course, it's doing now.

--Jim in Delaware