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matthewcplourde's picture
matthewcplourde
Posts: 33
Joined: Sep 2010

Hi community,

I just wanted to drop a quick "hi".

I was diagnoses with squamous cell carcinoma of the tongue 11 years ago, and I may be interviewed by the American Cancer society for one of their publications - I was the youngest male in the USA (at the time) diagnosed with that type.

Anyway, I'm finally getting around to changing some things about my life, and I want to try to stay active here, in case my experience can help anyone else in anyway possible.

Thanks!
- Matthew C. Plourde

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Congrats Matthew on 11 years....

I'm sure that you can offer a lot given the lentgh of time since your diagnosis, teatment and expereince.

You might even pick up something yourself from us. It's a great community, and a wealth of information and experience can be had.

Best,
John

fisrpotpe's picture
fisrpotpe
Posts: 1343
Joined: Aug 2010

Always exciting to see double digit survivors. I am certain you have many experiences and knowledge to share.

John

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

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.

Noellesmom
Posts: 1312
Joined: Aug 2010

With late stage III/early stage IV (odd, but that's what they told us) surgery was not an option for my husband. He had treatment for hypopharyngeal and base of tongue cancer.

Prior to treatment starting, Jim had cath port put in place and had a feeding tube (PEG type) surgically placed. We used the feeding tube only to flush it at night: Jim continued eating a regular diet - never slowed down in that respect.

Jim had 35 rounds of radiation and 3 rounds of Cisplatin three weeks apart. Received ethyol (given to help prevent thick mucous) shots before each radiation, which he prepared for by taking Zyrtec (for potential allergic reaction) and Compazine (the ethyol can cause nausea). Prior to his chemo treatments he took oral Emend and then also received a bag of at the time of treatment, along with potassium and magnesium and also a bag of IV fluids. He came back for two days post-chemo each time to get additional bags of fluid (and, of course, his daily radiation). He also took Emend for two days following the chemo.

Jim did very well with all of this with little nausea and only minimal fatigue during the treatments. He did not try to work as the doctors had advised against it.

We are about 2.5 weeks post-treatment and Jim is having a problem with weight loss and extreme fatigue. The doctor tells us the fatigue is not too unusual.

I hope your husband does as well with his treatments as Jim did!

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

It was so nice to read your post. It gives me hope. As a retired RN, I can imagine (and have seen) the worst scenarios. Today on day 4 he is starting to feel the fatigue. The nausea is under control at least.

Noellesmom
Posts: 1312
Joined: Aug 2010

Everyone has different experiences but cancer treatment has come a long way, particularly in dealing with the nausea. Emend is a miracle drug, as far as I am concerned.

The treatments just flew by, I know, in part, because Jim did so well.

Ask questions of the nurses on staff at your cancer treatment center - they are wonderful!

Hugs to you, buzz99. You are not alone in this. Don't forget that.

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

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

forme's picture
forme
Posts: 1158
Joined: Aug 2010

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's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

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

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

My dad was diagnosed in March with the same thing as your husband. He did not do surgery, it was not recommended. He did 35 rads with 7 weekly chemo's. He finished treatment June 22. He did not have any problems with the chemo. He was given the nausea meds during treatment and some pills to take for the 3 days after. He took them on schedule and never had any nausea. He did have a sore throat and mouth from the rads. He was lucky that he was able to eat through treatment. He is starting to gain his weight back and the fatigue is starting to let up. That was the biggest issue he had.

I understand feeling overwhelmed, at times I still feel that way. Please post whatever questions and concerns you may have. My family could not have gotten through this without the advice and help from this site.

Please keep us updated and I wish your husband's treatment goes well for him.

Kathy

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

This site is a godsend and just what I need right now. Thanks so much for posting your reply so quickly. I will be on the site daily until this is over.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Buzz,
I was diagnosed with Stage IV scc base of tongue with two lymph nodes involved last fall. I did nine weeks of induction chemo (three rounds), then seven weeks of radiation with chemo. Finished in March. After my three month scans, my doc said he'd consider me to be in remission (we have one node we're still watching, but doc thinks we got it all). Hope all goes well for you. I did well during treatment, and now have had my feeding tube removed, can eat and taste most things, am maintaining weight, and can honestly say that I usually feel good. Let us know how you are (both of you) as you go through this.

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Welcome to our little club.....

Best,
John

D Lewis's picture
D Lewis
Posts: 1545
Joined: Jan 2010

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

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Glad to see you posting. Love to hear you have been a survivor for eleven years!! I think it is so important for us to share our experience with others. The newly diagnosed and the veterans. This site has helped me more than I could ever express. So happy I have found such a wonderful group of people that can relate to all I have been thru. It has been a huge part of my recovery.

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

11 years is great to hear !!

matthewcplourde's picture
matthewcplourde
Posts: 33
Joined: Sep 2010

Everyone's so welcoming here! Thanks! :)

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Dude, you rock.
I'm sure your experiences will give encouragement to people here who are just embarking on this difficult road.

--Jim in Delaware
(two years out on Oct. 5)

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Matthew,

Awesome - 11 years! Congrats!! Inspiring, as I'm only 5 months out. I love seeing so many long termers. As many have said this is a great place to get info and to learn and share. The biggest thing I get out of this is how people here REALLY do care for each other. We are a diverse group but have a lot in common. You can come here and vent, bich, complain, celebrate and even joke.

Welcome and keep posting.

Positive thoughts to all!

Greg

GraceLibby's picture
GraceLibby
Posts: 88
Joined: Jul 2010

Thank you for giving us a much needed shot of inspiration!

Hondo's picture
Hondo
Posts: 5881
Joined: Apr 2009

That is great news; a lot of us stay here to help other just starting the journey. I know for me I had no one to turn too when I needed, I just want to make sure no one else ever has that problem. Welcome to the Family

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Matthew,
Chiming in on the Welcome Wagon. It's wonderful to hear about long term survivors. I'm a stage four base of tongue survivor, six months past treatment doing well (I always want to cross my fingers or knock wood when I say that). Glad we've got a "new" "old pro" here.

pascotty's picture
pascotty
Posts: 166
Joined: Aug 2010

Welcome Matthew, and congrats on 11 years. That is just wonderful, I think this is a wonderful site, I am in Western Australia, and funnily enough there is not a real great website for us to join, but, with the net, I feel so close to everyone. I am really inspired by you, thank you for joining. xxxxx

D Lewis's picture
D Lewis
Posts: 1545
Joined: Jan 2010

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

Deb

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

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

Regds
Scam

matthewcplourde's picture
matthewcplourde
Posts: 33
Joined: Sep 2010

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...

gvelez
Posts: 1
Joined: Sep 2010

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's picture
matthewcplourde
Posts: 33
Joined: Sep 2010

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!

james chambliss's picture
james chambliss
Posts: 70
Joined: May 2010

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

james

friend of Bill
Posts: 87
Joined: Mar 2010

You are a North Star for us young uns! Welcome

Vince

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