New Survivor here!

D Lewis

buzz99 said:

Survival story
My husband was recently diagnosed with Stage IV Squamous Cell Carcinoma of the base of the tongue. We have elected not to do the surgery and he started chemo on Monday. He will get chemo in 3 cycles over 9 weeks then radiation for 6 weeks with more chemo. Would like to find out what other peoples experience with this cancer and treatment is like. We are pretty overwhelmed right now.

Welcome, Buzz99
So sorry to hear that you are now a member of the club. Bring all your questions here. Folks will do their best to answer them.

Deb

D Lewis

Welcome Matthew
It's so good to hear from another long-term survivor. You just made my day brighter.

Deb

Scambuster

Hi Matthew
Nice to have you here Matthew, and I mean that in both ways.

Regds
Scam

matthewcplourde

Scambuster said:

Hi Matthew
Nice to have you here Matthew, and I mean that in both ways.

Regds
Scam

Thanks again!
I'm very excited to be here! Thanks again for all the well-wishes. I wish I could say you stop fighing it 11 years out, but not a day goes by where I'm not reminded... usually with those excruciating yawns

I do try to share with my kids too (3 and 5 yrs old), so they are not sheltered from it or frightened by the scars later. They sometimes rub my scars and ask me about my "boo boos". I find being honest with them has worked out well, they don't know all the details, but they know daddy was very sick before they were born and that the scars are "ok" because they don't hurt anymore.

Kids are pretty amazing...

forme

Skiffin16 said:

BUZZ99 ~ Different Dx, Similar Tx
My diagnosis was Tonsil Cancer STG III, SCC, HPV+ and one lymph node. I did have a very similar treatments as Noellesmom.

They removed the tonsils, then I started off with nine weeks (three week cycles) of Cisplatin, Taxotere, and 5FU via a port in my chest. The 5FU was administered through a pump that was with me 24/7 M-F each first week of a cycle.

After that I started the seven weeks of concurrent chemo (Carboplatin), and 35 daily injections of Ethyl (Amifostine) and radiation.

As mentioned, the EMEND is excellent for previnting nausea, I never got sick at all.

Anyways, I'm 15 months post treatment, all scans have been clear and clean, NED, and all blood work is back within normalranges.

Reaction and recovery is different for everyone. But eventually and over a very long process I have regained nearly 80% or more of both taste and saliva production.

Best to you and yours,
John

Amifostine
Hi John,
Can you tell me about your experience with the amifostine. I am trying to gather as much info as I can. I want to present it to my onc before I go in for my rads. I have a loss of saliva from the last time and worry about saving the little I do have.Thanks so much..
Lisha

Skiffin16

forme said:

Amifostine
Hi John,
Can you tell me about your experience with the amifostine. I am trying to gather as much info as I can. I want to present it to my onc before I go in for my rads. I have a loss of saliva from the last time and worry about saving the little I do have.Thanks so much..
Lisha

Lisha
Sure, from my experience anyways, I know there's a few others that might chime in as well.

It was actually my Chemo MD that prescribed me, my Rads MD wasn't really a big factor. I think mainly he wasn't onboard as much because the side effects can tend to come into play during treatment.

My Chemo MD wanted me on it mainly to help reduce any thick ropey phlegm and congestion. Also that it could possibly salvage some saliva production.

Speaking only for myself, I never had problems with phlegm. I did for several months after radiation still have a very dry mouth, carrying a water bottle with me always. Any saliva that I could manage was sticky white paste at best.

Now at 15+ months out, I have regained nearly 80% or more of my saliva, can eat normally (anything). I don't need water any more than I did originally (other than at night, I'll wake up very dry and take a sip). I can at will produce clear, thin, watery spit...LOL.

Now I did have reactions eventually as it seems most people do. During treatment my injections would be in my tummy, each day about 15 minutes before rads (that's the most effective time I believe).

The injections would leave a big red itchy welt that would last for days. Then it would dry out, that lasted several weeks.

I also started getting high fevers, like in the 102.7 range. Very scared, we'd call in and they'd have me take Tylenol. That went on for a few days, stopped over the weekend and started again the next week, that was around day 30. I stopped the Amifostine for those last few days, finished up the last few rads, and was good to go, np more fever swings.

Anyways, I'd do it again, as I feel that in my case they were beneficial.

Best,
John

gvelez

Hi Matthew: Goood to find
Hi Matthew: Goood to find someoene with the same problem. I was diagnosed with squamous cell carcinome at the tongue base two years ago. I went through 39 rad sesions and 6 chemo doses. One of my problems now is swallowing, I really have to eat very soft and "oily" food so it can go through.

Was it the same for you? I am really thinking that I will stay like this forever because I see no healing at all in the last year or so. Taste is also gone, only a few foods taste as before dx.

Have you experimented changes on your mood?

Let me tell you that it is a real pleasure finding a survivor after all these years. I am sure your perseverance was one of your best medicines, is'n it?

Yours truly

German velez

matthewcplourde

gvelez said:

Hi Matthew: Goood to find
Hi Matthew: Goood to find someoene with the same problem. I was diagnosed with squamous cell carcinome at the tongue base two years ago. I went through 39 rad sesions and 6 chemo doses. One of my problems now is swallowing, I really have to eat very soft and "oily" food so it can go through.

Was it the same for you? I am really thinking that I will stay like this forever because I see no healing at all in the last year or so. Taste is also gone, only a few foods taste as before dx.

Have you experimented changes on your mood?

Let me tell you that it is a real pleasure finding a survivor after all these years. I am sure your perseverance was one of your best medicines, is'n it?

Yours truly

German velez

Things do heal...
Hi German,

Though I still drink water/whatever with every bite of food, I can now eat pretty much anything. Sometimes a really dry meat will give me trouble, but you get used to the occasional choking fit... it sucks, but it's not the worst thing in the world.

For me, taste returned after about 1.5 years, but I was 23 years old at the time... my youth probably accelerated the healing process. I can now taste pretty much everything, though certain spices and glazes will flat-out kill my taste buds for days (I return to the not-tasting-anything garbage). However, as the years have passed, I've been able to cross taste-killers off my list (I remember when tomato sauce would kill me, now it's no sweat).

As far as mood changes, I'd say my "overall" mood has improved by about 200%!! However, it took me about a decade to *really* appreciate what I went through. Perhaps it was my age, or maybe I'm just a slow learner. I'm loving life more than ever, nothing seems to get me down these days. But, that change was *glacial* for me... once I was healthy enough to work again, I jumped right back in. I lied to myself and believed I was a changed person... I wasn't. Slowly, I unleared everything I was taught over the first 23 years of my life and I believe I am a better/happier person now that I'm just enjoying life... I have a high-stress job, but I feel none of it. At the end of the day, I'm alive/healthy and that's a great starting point.

I don't know if "perseverance" is the right word... perseverance is something I "learned", but it wasn't what drove me. I still haven't found religion, so I wasn't relying on "faith" either (though that can be a powerful force for those of you who have faith - I'm jealous!). For me, because I was so young, it was the realization that I hadn't done the things I wanted to do in my life. They gave me the numbers, and I had less than a 25% chance to survive. That number was shocking and my survival instincts carried me through the brutal surgery, coma and month in the hospital.

After that, the radiation trumped anything that came before and it was my support system that helped carriy me through. My nurses, family and friends were very supportive. I made promises to myself like: *when* I survive this, I will return to the things that I love the most and live each day to its fullest. The hope that each day would get better until I was "normal" again also helped drive me. Of course, there is no "normal"... life is life and each day brings new challenges.

In summary, I can tell you that it *does* get better with time... if you allow it to. Don't get captured by the anger, as that emotion is only useful in very dire circumstances and it's never okay to direct that anger at anyone/anything other than the disease. Start imagining your body as a healing force, slowly bringing you back from the brink. Have faith that things will improve, but not right away. Believe in your ability to recover and you *will*. Focus on something you want to change about your life and start making those strides. You can and you will get there!

friend of Bill

11 !
You are a North Star for us young uns! Welcome

Vince

james chambliss

matthewcplourde said:

Things do heal...
Hi German,

Though I still drink water/whatever with every bite of food, I can now eat pretty much anything. Sometimes a really dry meat will give me trouble, but you get used to the occasional choking fit... it sucks, but it's not the worst thing in the world.

For me, taste returned after about 1.5 years, but I was 23 years old at the time... my youth probably accelerated the healing process. I can now taste pretty much everything, though certain spices and glazes will flat-out kill my taste buds for days (I return to the not-tasting-anything garbage). However, as the years have passed, I've been able to cross taste-killers off my list (I remember when tomato sauce would kill me, now it's no sweat).

As far as mood changes, I'd say my "overall" mood has improved by about 200%!! However, it took me about a decade to *really* appreciate what I went through. Perhaps it was my age, or maybe I'm just a slow learner. I'm loving life more than ever, nothing seems to get me down these days. But, that change was *glacial* for me... once I was healthy enough to work again, I jumped right back in. I lied to myself and believed I was a changed person... I wasn't. Slowly, I unleared everything I was taught over the first 23 years of my life and I believe I am a better/happier person now that I'm just enjoying life... I have a high-stress job, but I feel none of it. At the end of the day, I'm alive/healthy and that's a great starting point.

I don't know if "perseverance" is the right word... perseverance is something I "learned", but it wasn't what drove me. I still haven't found religion, so I wasn't relying on "faith" either (though that can be a powerful force for those of you who have faith - I'm jealous!). For me, because I was so young, it was the realization that I hadn't done the things I wanted to do in my life. They gave me the numbers, and I had less than a 25% chance to survive. That number was shocking and my survival instincts carried me through the brutal surgery, coma and month in the hospital.

After that, the radiation trumped anything that came before and it was my support system that helped carriy me through. My nurses, family and friends were very supportive. I made promises to myself like: *when* I survive this, I will return to the things that I love the most and live each day to its fullest. The hope that each day would get better until I was "normal" again also helped drive me. Of course, there is no "normal"... life is life and each day brings new challenges.

In summary, I can tell you that it *does* get better with time... if you allow it to. Don't get captured by the anger, as that emotion is only useful in very dire circumstances and it's never okay to direct that anger at anyone/anything other than the disease. Start imagining your body as a healing force, slowly bringing you back from the brink. Have faith that things will improve, but not right away. Believe in your ability to recover and you *will*. Focus on something you want to change about your life and start making those strides. You can and you will get there!

Wow
Congrats on 11 years, i pray that we all get that.


james