Hi Everyone -

My name is Mike and I am a 35 yr. old father of one. I was diagnosed on 6/28 with SCC of the left base of tongue T1N2bM0. I've never smoked and rarely drink so this was quite a surprise. Anyway, I had a modified radical neck dissection by a wonderful Dr. at Johns Hopkins on 7/19 and started Tomotherapy IMRT (35 treatments scheduled) on 8/15 with adjuvant Erbitux (7 treatments scheduled). I completed my 5th radiation treatment today and so far, no noticeable affects. I'm sure they're to come but truthfully, I'm not afraid of the treatments. What I'm afraid of is not surviving long enough to see my little boy grow up. I know so many people on this forum have similar fears and I'd love to hear from you to understand how you cope.

Also, for anyone who is interested, I have been keeping a blog of my entire experience from diagnosis through treatment. You can see it here:

http://mycancerfight.blogspot.com/

I wanted to share my experience so that others in the future might have a better idea of what to expect.

Thanks in advance and God bless you all.

Sincerely -

Mike

Mike,
Welcome. How wonderful that you are able to be treated at such a premier facility like Johns Hopkins. One member at this forum who I believe is out of the country at the moment has alot of experience with Johns Hopkins. I believe her husband is part of a trial there now which involves the HPV vaccine. I would assume since you have been treated at Johns Hopkins that you have heard of the relationship between HPV and oral cancers. You should believe 100% that you will see your little boy grow up, no reason not too. Best advice I can give you is take it one day at a time. I know my father was alot older than you when he was diagnosed but a cancer diagnosis not matter when still hits you like a ton of bricks and scares the sh&% out of you. Time will help with this I promise. Stay strong and keep posting. You will find a wealth of information on this website and from the people in these forums.
Radiation is different for everyone they say so take it as it comes. It is no easy road. Are you taking the Amifostine shots to help try and prevent dry mouth or maybe with Tomotherapy that isn't as much of a problem, I don't know. My father had XRT. He tolerated the Erbitux well but suffered the most common side effect the dreaded acne rash. They can eventually give you something for that. He began his Erbitux one week prior to radiation and it was a double dose.
Again stay strong and God bless
Kim

Hi Kim -

Thanks for the reply. Yes, my Dr. (JC, btw, who is one of the BEST) did talk to me about the link with HPV. He also said that the prognosis for HPV related head and neck cancers is generally better although that seems a bit counter-intuitive to me. At first, he didn't think my cancer was HPV related because it is fairly well differentiated and HPV cancers tend not to be (again, somewhat counter-intuitive) but biopsy of the lymph nodes that he removed indicated HPV. He actually did a blood test on me for something called Fanconi's Anemia which is really no fun for people who have it becuase there is apparently some link between FA and solid tumors of the head and neck.

I wasn't told of an HPV vaccine but I will certainly bring it up in a couple of weeks when I go in for my follow up.

Yes, the Erbitux rash just reared it's 'ugly' head (and chest) yesterday after just one treatment. At least I know it's doing something! I'll have pics. of it on my blog tonight or tomorrow.

For what it's worth, you're right. Hopkins is second to none. It's only a little over an hour from my house but I would have definitely done whatever it took to get there no matter where I lived. I interviewed 4 surgeons including one of the top head and neck surgeons in Washington, DC before settling on Hopkins and I am so glad I made the choice that I did.

Edited by Gary Allsebrook

It is OCF policy to respect doctors privacy and not mention their names in the public forum.

Mike,

Welcome to OCF -- it sounds like you're in good hands with the people at Johns Hopkins. I wanted to respond to your concern about being around to see your son grow up. I was diagnosed with Stage II SCC of the left tongue when I was 39 (and I've always been a non-smoker as well). Soon after I had surgery, my brother-in-law and his wife had their first child, and they named me as his godmother, I think in an effort to show their faith that I would be around long enough to actually serve in that capacity. I'm thankful that I've had many opportunities over the years since then to watch him grow, and last fall I helped take him on tours of college campuses as he is getting ready to finish up his high school years. The time has really flown by.

Take things one day at a time, and probably before you know it you'll be faced with those pesky college tuition bills!!

Cathy

Hi Mike, Welcome to OCF. I was diagnosed 4 years ago at age 44 (non smoker) with tongue cancer and two nodes positive, I was staged at IV. I live in Baltimore and received my treatment at Univ of Md. Hospital. I continue to be checked by my oral surgeon, ent and oncologist.
It was a shock when I was diagnosed and I prayed that I would live to see my children (twins) graduate high school, they were freshmen in high school at the time. Anyway, they are both in their second year of college now and I am still here. I know it is difficult especially when children are involved, I will keep you in my prayers.....God Bless, Carol
p.s. your cancer blog is very helpful to others

Hi, Mike, Reading your blog should indeed help other people.Is there a way to send it here also to our blogs so it doesn't get lost to people here. My husband has the Erbitux rash also - big time, on face, chest, back, in his ears and his fingers at the nail site have started cracking and bleeding. He is going to start on an antibiotic tomorrow. If your Doc recommends something for you for the rash, please let us know. Hope you get another pizza and a big coke soon! Amy

Welcome Mike. I was diagnosed May 1st at age 32 (non smoker) with tongue cancer and one nodes positive, I was staged at III. I was diagnosed only 6 weeks after my first child, a daughter, was born. I live in MD too and was treated at Univ of Md. Medical Center. I was a shock when I was diagnosed and I feared that my husband and daughter would lose me way to soon in life. I still worry a lot about that, and I am sure that I will have to be heavily medicated the week of my first follow-up scan, but I believe that it will get easier. It does help me remember that everyday is truly a gift.

Good luck!
Sarah

Hi Mike,

I'm coming up to two years after diagnosis. Right side, base of tongue, two nodes positive. proabably stage 3/4. Treatment is tough, and they hit it and you hard. But I am looking forward to a full long life. I'm 59, playing golf, swimming and doing everything I did before. Recovery does take a while. I still get tired easier and quicker. The radiation and chemo take a lot out of you. But the body does come back. My thyroid was nuked, so I am taking synthroid which helps my energy level. I'm sure you will beat this thing as we have done. ATTITUDE palys a major role in your recovery. I started lifting and working out two weeks after my neck disection. I finished radiation and chemo on Dec 6, 2004. had my rad neck disection on Jan 31st. Started working out on Feb 15th. Began eating on jan 29th and had the peg tube removed Feb 1st.

In other words, FIGHT HARD every day, you will come out of this a stronger but more compassionate person.

Right now, complete your treatment. I beleive you have many more years with your entire family.

Steve

hi mike, welcome i'm very new too. i was diagnosed on 8/4/06 SCC right tonsil and lymp nodes stage IV. and i understand your fear i have a 15, 8, and 4 year old. what i remind myself everyday is that there is a 90% survival rate and i'm a fighter. i must be.... when i watch my children play and see them so full of life it helps me to look within and find that life. i find out tomorrow about my treatments and i'm scared but i 'll do everything i can to make this process less emotionallly effective on my children... and with this forum we can all help eachother.... god bless you and good luck, i'll be praying for you...

Hi all -

It has been awhile since I've checked the site so I thought I'd post with an update on my treatments.

I am currently through 23 of 35 Tomotherapy IMRT treatments so 5 weeks down, 2 to go. So far, I have been very fortunate since I can still swallow with little to no discomfort and have not really had issues with mouth ulcers. A couple here and there but not bad. I have yet to take any pain medication of any sort and I'm hoping this is as bad as it will get. I do have that feeling of sand stuck in the back of my throat but it's tolerable. I also don't feel like my mouth is all that dry. A little yes but again, tolerable.

My major issue related to the radiation is taste loss. It went pretty quickly and at this point, anything that may have residual flavor tastes like soap or glue. It's horrible and really compels me to not eat. I'm living mainly on a liquid diet because when I drink through a straw, I can bypass most of the taste issue.

Question for the board - how long will the taste issues last once treatments are finished? I find myself fantisizing about food at this point and I can't wait to enjoy a meal, any meal, again.

Since I am also taking Erbitux, I thought that I would report that those effects are very insignificant. I had a terrible case of the acne after week 1 which lasted until I decided to stop being stubborn and start taking the anti-biotic that was prescribed. Since then, the rash has cleared quite a bit and now looks more like a case of rosatia. The biggest problem that I've had with the Erbitux is not from the Erbitux at all but from the Decadron which is a steroid given as a pre-med during treatment. This drug causes a day or two of indigestion and rather nasty hiccups. Otherwise, no issues.

Here's to hoping for smooth sailing down the home stretch!

Mike

Mike, good to hear that the Erbitux isn't that bad for you. We can't make John's rash go away. But he has never had hiccups As to taste issues - it seems to be different for everyone. So keep experimenting and keep eating. It sounds like you are doing well . Amy

Amy -

I don't know if your husband is taking anything for the rash but Doxycycline is what helped me. It's an antibiotic. Tends to dry out the skin but that better than the acne.

Thanks, Mike, John took a round of Doxycycline last month- helped a little but not much. The Chemo Doc has reduced his dose down a bit to see if that will help.

Mike,

I think you may get a range of responses about the length of time it takes for taste buds to come back -- it's hard to generalize about what to expect on that score.

In my case, it took many months, and it was a gradual process -- some taste buds returned sooner than others. In the meantime, you can't let your diet be limited to what "tastes good", since virtually nothing does. You need to be sure you're getting a balanced diet with plenty of calories (whether by mouth or by tube) to give your system the best shot at recovery.

Cathy

Hi Mike,

The first thing that came back for Jack was salty foods - he started tasting that around 6 weeks. It took another month for sweet tastes to kick in. At 4 months he was able to taste pretty much everything. Try scrambled eggs and cream cheese. Sounds gross but Jack was able to taste that first.

As Cathy said, it's very hard to generalize but don't be discouraged if it doesn't happen quickly. You've done so well with the treatments that I am really hoping this will go the same way.

Be very careful to monitor your weight after treatment, that's when Jack actually felt worse and you need to maintain nutrition/hydration to recover.

Glad to hear you're doing well.
Regards JoAnne

I'm not sure about this but it seems like cases where the primary site is a tonsil, taste seems to come back faster than cases where the primary site is the tongue, especially with IMRT. I guess when the tongue is the primary site being radiated, there is more trauma to the taste buds.

Mike, I think you may be correct about that because my tongue was uninvolved and my notes indicate that one month from end of treatment I ate and tasted a whole jelly donut (nutrition not being a priority at that point). I remember eating cases of Campbells chicken noodle soup before that, as I could taste the salt, and the noodles slid down easily. As far as I know, the order in which taste returns is the same for everyone -- salt first, sweet last.

One other suggestion -- I didn't need pain meds until the last week, but I really DID need them then. Stubborn to the end, I thought I could handle it but when I went into shock, was overruled (grin). So be prepared to ask if you need it.