My cancer was diagnosed 8/17, in my tonsil. It is about 2.5 cm and restricted to the tonsil. Originally the EENT thought that it was spread into the neck and the roof of the mouth, as per his exam and the Catscan. I then did a Petscan, and when I met with the medical oncologist, was somewhat relieved to find the tumor is isolated only in the one tonsil. It is considered as Stage II. So, I am here to learn experiences of other patients and their viewpoints.

Treatment will be two cycles of chemo, followed by radiation. I wondered why they didn't choose to do a tonsillectomy, but apparently the chemo/radiation is the best regimen. I conferred with my family MD on this, and he said yes, that is the way most of his oral cancer patients have been treated. So, that's what I will go for. The prognosis seems to be pretty good, and I think I am ready for the fight.

I am 66, in good health, and probably more fit than most guys my age, with good exercise and diet habits. I was a fairly heavy smoker and drinker, but quit smoking in 1985, and quit drinking in the early 1990s. Have never used any smokeless tobacco.

It appears that my doctors are highly-regarded cancer fighters. Communication has been good, and everything has moved super quickly. No waits for appointments, etc. yet. I figure there will be challenges, and am ready to accept them.

Thanks in advance for any comments.

Old Falcon

Hi Falcon, my primary was also on my to0nsil. It was explained to me that a tonsilectomy would not be needed as radiation would burn the tonsil away anyaway.

Hi - welcome there are quite a few of you guys here someone will be along to talk to you soon enough. Are you bring seen at a ccc? Because - I could be wrong ( very possible) but as far as I know usually they remove the tonsil ( why not - you don't need it? It has a tumor... Get rid of it so the bulk of the cancer is gone... Then use radiation and chemo for any micro scopic cancer that may be left. If you arent at a ccc then you should get a second opinion there - take care and good luck!

I would ask that my cancer cells be tested for HPV.

Normally the Tx is concurrent radiation and chemo not chemo first and then radiation. Also the chemo is usually given in 6 weekly doses or 3 larger doses spread throughout the radiation days, i.e. 1st day of rad, 14th day of rad and last day of rad. Chemo is most often recommended if there is nodal involvement which is usually the case when the primary is located in the Base of Tongue or tonsil region.

I would not hesitate to get another opinion from a CCC like MD Anderson.

Hi Falcom, welcome to OCF family. We all may give you varying advices and may have difference of opinion but our objective is to get a best treatment and care for you.

While you can refer to NCCN guidelines (Page 18 for T1-2,N0-1) published at OCF website: http://oralcancerfoundation.org/treatment/pdf/head-and-neck.pdf

Your Stage II cancer may just require surgery or chemoradiotherapy but induction chemotherapy may have been planned to reduce the risks.

I would also suggest getting second opinion from CCC

Thanks for all the posts and wellwishers. I am now past the three massive rounds of veterinary-issue chemo. Cisplatin/Taxatere(sp?) with all the trimmings (I haven't learned all the terminology and abbreviation to make a tag below) I have now completed two weeks of radiation. 5 more to go. I also am taking three lighter rounds of Carboplaxin/Taxol
chemo to work in tandem with the radiation.

Both the Med Onc and the ENT say the tonsil tumor is gone. There is one tiny tumor in one node, as indicated on the last CT scan.
ENT today said he thinks it is gone. He says no surgery will be necessary. I thought this might mean that I could get a shorter radiation term. No such luck. Same for everyone, regardless of tumor size, I guess. BTW, mine is HPV. Drs. say that is to my advantage.
Thanks to all,
Falcon

Falcon, welcome to OCF. Sorry I missed your original post. Your doc's are correct, it is an advantage for your cancer to be HPV+. Being HPV+ usually responds better to treatment and has less of a chance for recurrence.

Best wishes with your treatments! Most people who push themselves with high calories (2500+ daily) and 48+ oz of water daily get thru this a little easier. If you run into any questions, please feel free to ask. We will help get you thru this.

Hi Falcon

I have nothing much to add except to let you know that my Alex underwent a similar regimen as you can see from my signature. We found out at the end of treatment that he was HPV+ which was a welcome surprise as he was a heavy smoker/drinker and we assumed his tumour was smoking caused.

Whilst many undergo chemo/radiation alone, (that's where you have chemo and radiation at the same time either once a week or once every 3 weeks), the addition of induction chemo (the "veterinary" dose chemo you describe) has shown to be similar to surgery plus radiation in terms of survival and recurrence. We opted for this as surgery wasn't an option.

It might have been a bit of overkill - we will never know, but better this than discovery or development of mets down the track, possibly watching Alex die and wondering the whole time if we could have saved him if we had done the induction chemo.

Good luck with the rest of your treatment, keep us posted, and keep asking questions. One of the great things about this site besides it being obviously great for support and information, is that you will realise that whatever you are going through has happened to someone else before and you will hopefully be reassured that your reactions (physical and emotional) are not uncommon.

Karen

Falcon - sounds to me as though you're doing all the right things. And I'm so glad to read of the HPV+ status!

You're not complaining (as I certainly did!) about the rads, which I take to be a good sign. It's a tough treatment, no question, so please post any and all questions about any of it - side effects especially as there are real experts here on how to manage those.

Assume you'd visited a dentist and gotten fluoride trays prior to the radiation (?). Anyway it's something to ask about if not.

Good luck and courage - from all of us.

Thanks for the followup, everyone. To klo, yes, I understand about your idea of overkill, I have felt the same way. I just felt that a little too much was a lot better than not quite enough. I was originally scheduled for just two rounds of induction chemo, but the ENT wanted it changed to three. And I was OK with it. Whatever it takes.

Re: the flouride trays, I don't have those and they weren't suggested by the Rad ONC. I know nothing about them, but will ask.

I have started to experience the mucositis mouth sores. Had some thrush with it last week, but got rid of that with medication. I Got the magic mouthwash today and tried it prior to evening meal. It does help. This stuff is pretty expensive. $42 for 480 ML bottle. Compound pharmacy doesn't take any insurance, although my insurance company said I can file an exception form, and they will almost certainly reimburse for it. Has anyone had experience with this? My rad ONC says he must go through a compound pharmacy in our city for this prescription.

Also, 30 ML, (three tablespoons)seems to be a BIG dosage on the Magic Mouthwash. Has anyone tried maybe 20 ML?

Thanks,
Falcon

Hi Falcon:

The Magic Mouthwash prescribed by my ENT and Radiation Oncologist can be filled at any drug store - they write down what they want included and the amount of each, on the prescription, and the druggest makes it. I did go to one ENT who told me I would have to have it filled at a Compound Pharmacy, but it was filled at a chain drug store in my city (grocery store Krogers Pharmacy). I watched as the pharmacist mixed the ingredients. I don't remember the cost, but it was far, far less than $42. Maybe check at a drug store, show them the prescription, and see what they say. Good luck, and welcome from julieann

Hi there - mine was just a mouthful - capful, I think it's just as affective - you need to see a dental oncologist ASAP! Radiation does a number on your mouth and gums - and teeth, it can cause mouth dryness which leads to cavities and and over abundance of plaque (spit is important!!!) anyway you need flouride trays - use them daily to prevent dental fall out. My ccc has a dentistry dep. that was where I was sent immediately to be fitted for my trays. If you have to have a tooth pulled after radiation it can be a nightmare! (HBO dives etc...) try to save your teeth now ! Aside from saving on dental expenses in the future - radiation can cause osteonecrosis which if a tooth has to be removed - could lead to a mandiblectomy etc...
You don't want to go there!!!

Good luck with everything!! You'll be done in no time.

Hi, Falcon
It sounds like you are coming along well. Your dentist will need to take an impression of your teeth for the trays - if your mouth is still up to it, you should get it done quickly.

If you have not already started, you may want to try some of the complete meals (Ensure or Boost) to keep your calories and energy up while you are completing therapy. Homemade protein shakes are another option.

I finished radiation Jan 3, and got my all clear Petscan April 5. I had lots of mouth sores during and after radiation, which were pretty tough to deal with. Lost 17 pounds, which puts me about where I should stay. But I probably won't.

I was using some transdermal Fentanyl, 50 mg then 25 mg. When I quit it, I developed even more dry mouth than I had previously (at least it seemed so), coughing, sneezing, runny nose, etc. I have been off it about 10 days and these symptoms still exist. I have more difficulty sleeping longer than a couple hours at a time. Has anyone experienced this?

Hi, Falcon
glad to hear about your all clear scan!

It's usual to have the dry mouth issues three months out, but I don't know if dropping the Fentanyl has any correlation with it, or with the sneezing and running nose. In Ohio, at least, it's a bad year for allergies - maybe that's part of it.

If you don't already have one, a bedside humidifier might help. It helped a little with my husband's dry mouth, which in turn helped him sleep better. At a year out, he is sleeping fairly normally - but it took its own sweet time in coming!