What next

akbear49

Hi All

I just completed my 35 radiation treatment 7 days ago and my 3rd (final) round of Cisplatin 14 days ago.

My mouth cheek has sores on the right side that seem to be improving and my tongue has a large sore on the same side. Luckily my throat never really got that bad and it seems to be improving as well.

My saliva is thick almost slimey and my voice is just about gone. I have an earache on my right side where it seems most of the damage has been done by the radiation. The cancerous lymph nodes and deep tongue tumor were on the left side.

I gave up on solid food about a month into my treatments. My mouth tastes like salt all the time and any food I eat quickly loses any flavor as it is overwhelmed by the salty taste. My stomach signals me that if I try to swallow that food it will send it right back. I have been on a liquid diet of Ensure, fortified carnation breakfasts, fortified coffee and consomme soups for quite some time now. This surely isn't the more fun liquid diets of my youth

Apparently I'm doing pretty good and only lost 18 pounds of the 217 I started at.

I do get tired pretty easily although I won't describe it as the fatigue I've read about and my balance is off somewhat. In my humble opinion though the balance issue is hardly worth mentioning to all but you folks who have been here

My question for you all - what next? When did you start feeling better, get your taste back, energy, stamina? Did anyone go to rehab? I do understand that we are all different but any info will help.

By the way, I am a 61 year old male, don't smoke, weighed 217 at the start, 199 now and the docs all say that I was healthy when this all started

Thanx

Skiffin16

You Said It - Everyone is Different
Your scenario sounds pretty much identical to how mine was.... For me it lasted for several weeks post rads.I also had the thick foamy instead of clear saliva. Everything tasted like sweat, even water.... I lived on Ensure Plys, water and a few scliced peaches (DelMonte Sliced Peaches in Light Syrup - the jarred kind)...mainly to keep the swallow muscles working.

Taste and saliva started coming back little by little after a month or two. Noe just over two years post rads, I'm back around 90% on both.

As for upcoming....more than likely Turky Neck, swelling under the throat because of damage to the lyphmphatic system drainage flow....that too will pass several monthspost rads.

L'hermitte's sign, a tingling or electric shock sensation when you tilt your head slighhtly forward (chin on chest)....that too will pass eventually....

It took me nearly 8 - 10 months before all of my blood levels came back in range.

Several other minor and some times annoying little aches and pains.

Best,
John

arndog64

Skiffin16 said:

You Said It - Everyone is Different
Your scenario sounds pretty much identical to how mine was.... For me it lasted for several weeks post rads.I also had the thick foamy instead of clear saliva. Everything tasted like sweat, even water.... I lived on Ensure Plys, water and a few scliced peaches (DelMonte Sliced Peaches in Light Syrup - the jarred kind)...mainly to keep the swallow muscles working.

Taste and saliva started coming back little by little after a month or two. Noe just over two years post rads, I'm back around 90% on both.

As for upcoming....more than likely Turky Neck, swelling under the throat because of damage to the lyphmphatic system drainage flow....that too will pass several monthspost rads.

L'hermitte's sign, a tingling or electric shock sensation when you tilt your head slighhtly forward (chin on chest)....that too will pass eventually....

It took me nearly 8 - 10 months before all of my blood levels came back in range.

Several other minor and some times annoying little aches and pains.

Best,
John

It's funny that you
It's funny that you mentioned problems with you balance. I have noticed my husbands walks like he has had several drinks. His balance is off, as well. He is 8 weeks out from treatment. Still uses his feeding tube and low energy.

hawk711

arndog64 said:

It's funny that you
It's funny that you mentioned problems with you balance. I have noticed my husbands walks like he has had several drinks. His balance is off, as well. He is 8 weeks out from treatment. Still uses his feeding tube and low energy.

Hey AKBear
You and I are close to the same age, I was 58 when all this crap happened. I just turned 60 and am 15 months post treatment. The thick mucous seemed to go away about 4-6 weeks after treatment ended for me. I lost about 20 lbs and am now at 185 and have held that weight for several months, just can't gain any.
The feeling better takes a while. I'd say 4-6 months until you feel like yourself or close to it. That's how long it took me at least. As John said, we are all different. The eating thing for me was a long time, about 6 months. I just couldn't swallow anything and had no appetite at all. I lived on Scandia shakes, Ensure, pudding, jello, soups for a while. They didn't seem to hurt me and gave me enough calories to stay at the same weight.
The key to this whole "healing" process is patience with a capital P. Sit tight and it will all come, it just takes some time. I'm sorry to tell you that, but it's the truth. It all will come back with time and no one can tell you when or how long, unfortunately.
Just keep positive, eat good stuff, drink good stuff and keep active. That all helps to get the the new "normal" as we like to call it...
All the best,
Steve

nwasen

What's next
Hello akbear49!
I am 61, was a heavy smoker, had quit a year before my diagnosis. Weighed 134 going in ( 5'0") and am down to 98. Was at 95! After about 15 of my treatments of radiation (35 with 7 chemo (Cisplatin) I dropped 30 pounds and had a PEG tube inserted. Lost all taste for anything. Everything tasted like dirt to me.
Had my last treatments the week before Xmas. Came home and felt lousy for a month. Extreme fatigue, got an infection, no energy; you name it. Made treatment seem better than that! But, after choking on a piece of soft potato in my creamy soup, I called my ENT and started throat therapy. I had two stretches in 3 months and 2 months of electrode therapy. It gave me back my voice (my friends say I don't sound any different than before therapy). I had a wonderful therapist who helped me not be afraid to try all kinds of foods. I went back to work part time 5 weeks after coming home. About a month later went back full time.
Was rough and some nights I came home and took a nap.
My docs said give it a year before I felt like "me" but it took about 4 months and I felt strong, not tired and my taste buds ALL came back. I had read enough to know what the worst cases could be and luckily I got better fast.
I am now PEG tube free (came out last Friday) and have had two 3 month visits with my oncology team/ They marvel at my recovery and hardly any side effects.
Get help if you feel the need. There are lots of places that have help for you/I can't imagine where I would be (eating wise) had I not reached out and gone for therapy.
I may never eat everything I ate before but I am a work in progress.
Do know everyone is different. I too had cancer left side of tongue and three lymph nodes. My last week of radiation I had super radiation which targeted only the left side. It saved my life but kicked my **** too!! As I am sure you can relate to.
I honestly feel better now than I have in a long long time. I enjoy each and every day and hope you can also.
Peace
Nancy

Jimbo55

Only 18 Pounds
I'd venture to say you did pretty good losing only 18 pounds during this ordeal.

How is your blood pressure? Mine got pretty low near the end of treatment. I would get dizzy if I got out of bed too quickly, it was attributed to the low BP and anemia from the treatment. Over time, my BP returned to normal.

I was about 1 week post tx when I woke up one am and told my wife that I actually felt a wee bit better then the day before. From that point on, it was a pretty steady progression. I am going on 1 year out and feel fine. I didn't get fatigue per se, but the energy/stamina level certainly was lacking.

My rehab began with walking, then running, also some light weights. I had to start with the lightest of weights. Everyone at my gym knew what I had been through and were all very encouraging. My first run was all of 5 minutes, it was all I could manage and was sweating bullets afterwards. Slowly but surely it gradually increased.

As Steve stated, stay positive, eat well and stay active. Cheers.

Jimbo

akbear49

Jimbo55 said:

Only 18 Pounds
I'd venture to say you did pretty good losing only 18 pounds during this ordeal.

How is your blood pressure? Mine got pretty low near the end of treatment. I would get dizzy if I got out of bed too quickly, it was attributed to the low BP and anemia from the treatment. Over time, my BP returned to normal.

I was about 1 week post tx when I woke up one am and told my wife that I actually felt a wee bit better then the day before. From that point on, it was a pretty steady progression. I am going on 1 year out and feel fine. I didn't get fatigue per se, but the energy/stamina level certainly was lacking.

My rehab began with walking, then running, also some light weights. I had to start with the lightest of weights. Everyone at my gym knew what I had been through and were all very encouraging. My first run was all of 5 minutes, it was all I could manage and was sweating bullets afterwards. Slowly but surely it gradually increased.

As Steve stated, stay positive, eat well and stay active. Cheers.

Jimbo

Weight
I was taking benicar for high blood pressure before I started. As my treatment progressed I nearly passed out a couple of times - got worried and my wife immediately jumped on low sugar as the problem. She had just had a similar problem within the last year. That wasn't it. Thats when I just stopped taking the benicar and immediately felt better - well lets say at least I didn't feel like passing out.

I finished my last radiation treatment 8 days ago and decided to take 1/2 the benicar dosage I had been taking previously - bad idea. I took them for 2 days and I began feeling pretty light headed again. Bottom line now is I'll just monitor my blood pressure and do whats best for me

I never suffered the fatigue I was warned about. In the beginning when I asked my radiation doc what she meant by fatigue she said you'll be too tired to get up and change the TV channel. I told her I had a remote so I'd be OK. I never reached that level of fatigue but boy do I tire easily.

We went for a walk, a very short walk, 2 days ago then my wife decided she needed to make a WalMart stop on the way home. I joined her and was pretty much done in no time. I spent more time resting on the couch afterwards then on the entire walk/Walmart.

About the worst thing for me now is the never ending salty taste in my mouth - I believe once that goes away I'll start mending pretty fast. The salty taste is so strong that I don't eat, I drink my diet.

Ed

Skiffin16

akbear49 said:

Weight
I was taking benicar for high blood pressure before I started. As my treatment progressed I nearly passed out a couple of times - got worried and my wife immediately jumped on low sugar as the problem. She had just had a similar problem within the last year. That wasn't it. Thats when I just stopped taking the benicar and immediately felt better - well lets say at least I didn't feel like passing out.

I finished my last radiation treatment 8 days ago and decided to take 1/2 the benicar dosage I had been taking previously - bad idea. I took them for 2 days and I began feeling pretty light headed again. Bottom line now is I'll just monitor my blood pressure and do whats best for me

I never suffered the fatigue I was warned about. In the beginning when I asked my radiation doc what she meant by fatigue she said you'll be too tired to get up and change the TV channel. I told her I had a remote so I'd be OK. I never reached that level of fatigue but boy do I tire easily.

We went for a walk, a very short walk, 2 days ago then my wife decided she needed to make a WalMart stop on the way home. I joined her and was pretty much done in no time. I spent more time resting on the couch afterwards then on the entire walk/Walmart.

About the worst thing for me now is the never ending salty taste in my mouth - I believe once that goes away I'll start mending pretty fast. The salty taste is so strong that I don't eat, I drink my diet.

Ed

Fatigue
Fatigue more than likely will catch up to you gradually... But I never felt like I couldn'g get up anddo things...I just tend to get more tired earlier in the afternoon.

Taste, yes I'm well familiar with that taste...to me, even water tasted like sweat....It'll get better....

Best,
John