Hi! I am a new member,a 44 year old female just coming off my 7th surgery for squamous cell carcinoma of the tongue. My Doctor got clear margins on three sides of the lesion, but found additional cancer this time at the base of the tongue. I have been told the next treatment for me is seven weeks of radiation (five days per week)and chemo treatments during the radiation on day 1, 22, and 43. This was all scary before, but now suddenly seems even more so as the traditional cancer treatments come into play. I am just throwing this out here. Not sure what to do next.

Welcome!!

7 surgeries....WOW!!! I would say eat as much as you possibly can before rads start.

If you have any questions, please don't hesitate to ask, everyone here is wonderful!

Yes eat as much and as often as you can now and during Tx try to consume appx 2500 cals and 48 oz of water EACH AND EVERY DAY.

See your regular dentist asap, assuming you have teeth left, so you can get Fluoride trays.

Most of us didn't feel the Tx effects until about the 4th week or in your case right after chemo #2.

I assume you will be getting Cisplatin so a pre Tx hearing test is in order as Cis can cause hearing loss. Along that line if you do start to hear "ringing" in your ears advise your chemo doc ASAP. You can be switched to Carboplatin to avoid the hearing issues.

Welcome and please use this site often as we can be one of your most valuable tools during this Tx.

Hey welcome! 7 surgeries is a lot wow... I was where you aare 10 weeks ago.
as of today I am 3 weeks out of radiation treatment and chemo - they did not start me on chemo the first day - they started me a week later which is normally okay - but my WBC count was low before the second so they bumped it a week and because of that they couldn't get my last treatment in. So I had two. Cisplatin is not bad - mostly causes nausea - if you take your meds it will help. In Canada they keep you in over night for the chemo because it's very hard on your kidneys they run 24 hour iv. If they don't do that for you where you are remember to drink lots! It can also make you tired.

The advice given to you by David is great - do see a dentist. My hospital has a dental clinic with dental oncologists on staff so I was referred there. Since I have dental coverage it was covered.

I had 6.5 weeks of radiation 33 in total - it sounds like you are getting 35. It's not easy and everyone has their own different experiences - but it is doable. It traditionally does take up to week four before you begin to really feel the treatments I was lucky - it got really bad at treatment 30 for me. The two weeks after treatment are the worst - then you slowly start to feel better.

Radiation is a whole bag of tricks. You do get mouth sores there are different pain meds offered - magic mouthwash to numb you so you can eat and drink - look up Manuka honey - it helped me get as far as it did with minimal pain, sores and meds. Your throat feels much tighter - and does get sore as well. So swallowing can become hard - not sure if you've had a neck dissection - if you have - those muscles and scars tighten too. You become fatigued the further along you get - it's worst the two weeks following treatment. I was a drooling fool. It's finally easing up. But it's likely because of all the irritation from the radiation. Use a good cream on your neck from the beginning and keep your mouth as clean as possible. Not sure if you are getting a peg - if you are remember to do your exercises and keep swallowing. Don't want to lose the ability.

If you have any questions feel free to PM me... It isn't easy but you will get through it.

Take care and good luck.

Welcome to OCF!

Before you begin, get a complete set of blood work including thyroid numbers. This way you will have an idea of what is normal for you before all the fun begins.

Take a person with you to each and every doctors appointment. All too often when its bad news we tend to shut down and not hear much else. Write down your questions and the answers. Ask if its ok to tape your Q&A so you can refer back to it later.

Get a second opinion. Especially since you have had 7 operations! You should be headed to a cancer center where a full team of doctors will discuss your treatment options and your history.

Its a great idea to take all the well meaning people who approach you with offers of help and write down their name and contact info in a address book. Tell them at this time you will keep them in m ind for when you need a hand. The time will come when doing a load of laundry will be helpful. Or maybe they could drive you to treatment one day and take the burden off your caregiver.

If you are able to eat, now is the time to eat lots! Fill up on all your favorite foods. Dont be afraid of calories, they are your friend! Gaining a few pounds right now is a good idea. You will lose some weight during treatment as your sense of taste will change and eating will have some challenges for a while. Dont worry, its temporary.

A signature will help us to get to know you easier. Its under the 'my stuff' tab. Click on profile, scroll to the bottom and type in the box. Dont worry about being technical, write what you feel is important.


http://www.oralcancerfoundation.org/resources/cancer_centers.htm
http://health.usnews.com/best-hospitals

Adding my welcome, songbird. 7 surgeries.... amazing! You're a hero in my book. Everyone above has given the usual excellent advice. I'd add only this: please keep us posted as you go, even if you just want to vent. We're all here to help.

Hi Songbird and welcome to OCF. 7 surgeries is a lot..I've had 4. Have your surgeries been partial glossectomies? My SCC was on my tongue too so it sounds to me our experiences have been similar. What stage was the cancer? Sorry for all the questions...just curious how similar our cases are.