I am a 62 year old male in Austin, Texas. Was diagnosed with Chronic Lymphocytic Leukemia a few years ago. Taking a targeted therapy that has no side effects and I am living a normal life with a long life ahead of me. Was about to start a new combo drug that they have seen puts patients in remission for a long time and had a CT scan as prep..Found a nasty looking lymph node and after biopsy and PET scan the diagnosis is Tonsil cancer primary and 3cm II Cervical neck node secondary with a couple of small suspicious nodes beside it. I believe my staging was T1N1-2 or intermediate as one doctor stated.
So begins my second cancer.

I am having a work up done in Houston at MD Anderson and while I do not have their final answer it looks like they will be recommending Proton Therapy and Chemo.
Will work through the insurance issues which they believe will be approved..eventually due to my CLL cancer and drugs. Will see.
My concern is that having to move to Houston M-F for 2 months will require me to shutdown a young business and be a financial burden on a stressed financal state from starting a business.
So I am considering IMRT instead of IMPT and having it done in Austin and close to home. My thinking is I will be able to work longer and hopefully work some down the road sooner.
Maybe wishful thinking. I am very fit and run/walk every day and weight lift. So I am probably better fit than any time in my life.

I am also a Roman Catholic Deacon and so my ministry is turned off also. This is a big deal for a cleric and his calling.

I have read some of the experiences here and it seems most posts describe pretty intense and tough going. It would appear that after 2-3 weeks into radiation and chemo work and anything else will be impossible so I should forget about everything but surviving.

Anyone have Proton Therapy and what are your results?
Anyone actually work and function through radiation IMRT and chemo?

Thanks!

Genau

Welcome to the forum although I’m sorry you have to join our circle of friends.

What have your doctors told you about your possible treatment? Will the fact that you are on a targeted drug for CLL complicate matters? Will radiation mean that yoou’ll have to stop the targeted therapy? These are questions I would ask the doctors prior to going into radiation if I were in your position.

ChristineB may know if there is a Hope Lodge near MDA where you can stay at a very reasonable rate during treatment.

I believe how difficult radiation is going to be is partly determined by how much you’ll be getting. I have no experience with proton therapy so I can’t speak to that. My husband had IMRT. He was a very fit, active 65 year old but he had 70 grays of radiation and that meant he couldn’t escape any of the side effects. I would suggest thinking more in terms of “if I get hit by all the side effects” rather than “maybe I won’t get hit by any side effects.” Prepare for the worst but hope for the best.

Do keep us posted about how you are doing.

Welcome to OCF, Genau! Im very sorry to read about your recent diagnosis of oral cancer (OC). Your post took me back to when I was first diagnosed and was worried about missing days off from my job and my teenaged children. I knew absolutely nothing about OC! I was trying to control something that I had no control over. Boy of boy, did I have a ton to learn!

One thing you will pick up from our site is that every patient is different and will respond to things in their own unique way. This goes for medical procedures, medications, recoveries, and anything/everything else relating to someones medical condition. You are correct in estimating patients have a hard time after about the first 2-3 weeks and then recovery which can be a tediously slow phase with ups and downs plus some setbacks thrown in as well. There are the lucky few who sail right thru rads with barely any noticeable problems. Its about 10% of patients who will get thru treatments without any major issues. The lucky 10% arent any special population segment, being active and in shape doesnt change who gets thru things easier than others. Over my years of being on the forum and speaking to so many patients from all over the world, Ive noticed the better patients do with their intake, the easier treatments will be for them. Taking in at the very least 2500 calories and 48-64 oz of water every single day may sound like alot but it really isnt when considering how your body is working OT fighting the cancer and trying to rebuild itself which burns up calories at a much faster pace.

Even if you do great with your intake, unfortunately you still may be one of the patients who struggle almost from the very first day of rads. Unfortunately, this is something nobody can predict. It all goes back to the "everybodys different" slogan. Even if you take several people who are the same age, sex, live in the same general area, have the same type of job, marital status, tumor location, size/stage of the tumor, are in general overall good health, etc... these patients are still individuals who will respond to things in their own unique manner. What works for one may not work for another patient even if on paper they appear to have the exact same characteristics.

From what I know of Hope Lodge, they have locations near all the top comprehensive cancer centers (CCC). Im sorry but I do not know Hope Lodges exact locations but they can easily be found online. When staying there, patients must have a caregiver there too.

Please use great care if you are planning on going against doctors recommendations with your treatment plan. I suggest getting a second or even third opinion before considering any changes. Treatment plans are created from detailed flow charts from years and years of previous OC patients. The National Comprehensive Cancer Network (NCCN) has this info available on their website. Oncology doctors have many years of education, clinical patient experience and residency behind them plus they go by tried and true treatment methods to hopefully eliminate the cancer completely the first time so patients wont need to get treated again. I know all too well how OC doesnt fit into anyones current lifestyle. Unfortunately no matter what the patient wants, its still cancer and is a potentially deadly disease that must be eliminated.

NCCN site

This is a response to all comments.

In regards to treatment recommended from MD Anderson, the surgeons were leaning toward robotic surgery, the radiation oncologists recommended radiation and the medical oncologist specializing in chemo recommended radiation and chemo. Same old story...I have a hammer and everything looks like a nail.

I learned through having Leukemia not all doctors know the correct treatment, even very good doctors. You just advocate for yourself and find those who are aware of the latest discoveries and recommendations for treatment. While MDA did very well with my CLL and my doctor their is in the top 5 in the US, perhaps my assumption they would be the best at Head and Neck is incorrect.

Plus I have yet to see an exhaustive comparison between IMRT and IMPT to be able to judge if IMPT is really worth relocating for treatment.

I have also not seen, but still researching and asking doctors the real benefit of adding chemo to radiation treatment. Some comments were it adds 2% to your success stats...hmmm...

So for my treatment I do plan on getting more opinions and my questions answered by more than Dr. GOOGLE or anecdotal info posted online and then making the decision. Patients who post online are wonderful for sharing the challenges and solutions they have found and I can see this site has great people taking the time to share their experience in hopes to help others.

But, I have learned over the years that people who post online whether it is a product review or disease are either in the initial stage of earching for answers or have problems. Most who do not suffer the worst do not post. Some do.but most do not.

I am glad to have this resource to understand potential, maybe probable issues. It will help me plan for after treatment.

All the best to your all.

Unilateral proton therapy, IMPT begins Feb 25th. 6 weeks duration. No chemo and no surgery. My diagnosis was early stage and small tumor on one side with 1 cervical II lymph as secondary site an a small lymph node beside that. All on the same side. HPV+. Nonsmoker, nondrinker. I do have Chronic Lymphocytic Leukemia(CLL) which is successfully being treated. Have bo symptoms from the CLL or side effects from the medicine(calquence). Waiting to hear if they will want me off of Calquence meds during treatment.

I will post weekly so others who search for proton therapy will have another source to understand side effects.

Genau,

Good luck with Proton Therapy! I had Protons in 2014 for another recurrence, and believe it, along with my other treatments, finally cured my cancer! I hope the same for you!

1 week prior to treatment. To get prepped and ahead of the game:
Starting emu and magic cream on neck now. Starting mouth, neck and swallowing exercises. Also started rinsing and gargling with saline and baking soda solution.
Assembling recommended products MDA told us at education session.
Only downside right now is I had to rent temp apartment in Houston during Rodeo Event. Doubled rent costs.