New Survivor here!

matthewcplourde

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

Welcome Aboard
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

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

John

buzz99

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.

Pumakitty

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.

HI
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

Noellesmom

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.

my husband did well
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!

sweetblood22

Hi Matthew!
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

Hi Matthew
11 years is great to hear !!

matthewcplourde

Everyone's so welcoming
Everyone's so welcoming here! Thanks!

buzz99

Noellesmom said:

my husband did well
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!

Experiences with tongue cancer treatment
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.

buzz99

Pumakitty said:

HI
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

Tongue cancer treatment
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.

Noellesmom

buzz99 said:

Experiences with tongue cancer treatment
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.

try not to imagine
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.

delnative

matthewcplourde said:

Everyone's so welcoming
Everyone's so welcoming here! Thanks!

11 years!
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)

GraceLibby

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

Greg53

delnative said:

11 years!
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)

Welcome
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

Hondo

Hi Matthew


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

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 Buzz
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.

Pam M

Hi Matthew
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.

Skiffin16

Noellesmom said:

try not to imagine
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.

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

Skiffin16

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
Welcome to our little club.....

Best,
John

pascotty

Pam M said:

Hi Matthew
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.

Welcome
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