I�m near a crossroads in my treatment.

From California I came to MD Anderson in Houston with the idea that my base of tongue and bilateral lymph node cancer tumors would be treated using Chemo and IMPT (Proton Therapy). When I arrived, I found out the only way to get Proton Therapy here at MD Anderson would be if: (1) the coverage area for the tumors was not too big and (2) I agreed to take place in a randomized clinical trial where I would have a 50/50 chance of receiving Proton Therapy (the other 50% would be treated with IMRT). I have no family with me full time here in Houston.

The doctors here decided on an approach of using preliminary chemo for 6 weeks prior to starting radiation treatment. For the past 6 weeks I have received weekly chemo treatments, which included Carboplatin, Paclitaxel and Cetuximab. The goal was to reduce the size of the tumors and make them softer and more treatable with radiation. Though I don�t know the exact dimensions, the tumors have decreased in size according to the Chemo Oncologist and the CT scan. So, it seems the preliminary chemo approach has accomplished its� goal.

At this point, I�m not sure if I will receive the Proton Therapy or IMRT. On Friday, I received an orientation and training to the radiation therapy side effects. Next week they will tell me which type of therapy I�ll receive.

I am here in Houston by myself. My fianc� and my sister have come at different times to be of support to me, but neither can manage to be here with me full time. At this point, I have serious concerns whether I can handle the radiation part of the treatment without more support. I would have more support at my home in California than I would have here. If I�m not chosen for the Proton Therapy, I will receive the IMRT here in Houston. I can also receive the IMRT in California. One of the main reasons for me to come here to MD Anderson was the Proton Therapy offered supposed more effective delivery of the radiation with less side effects. The other good reason to come here was MD Anderson�s stellar reputation for treating Head and Neck Cancer.

Does anyone have any thoughts/experience with taking radiation treatment (either Proton or IMRT) without the support of another person at home to navigate the challenges of food, medication and transportation?

In the next couple of days, I will learn whether I am to receive Proton Therapy or IMRT. If I am to receive IMRT, I can choose to return to California to take it there. The decision pretty much comes down to the advantages of the specialized care here at MD Anderson (though I�m sure the care is excellent in my home town) without much support versus treatment at home with more support.

Your insights are appreciated�thank you. Roger

RogerP, welcome!

It sounds like you have a few issues looming ahead. The help and support may apply regardless of where you are but doing this alone in a foreign city doesn't sound good, to me. I think you would be fine for 4 weeks or so and then things can start to escalate, but not in everyone. I've seen people coast through IMRT without taking off work.

As far as proton beam or not, I can't help much with that.

Hi Uptown,
Thanks very much for your input...much appreciated.

Having options are good. I basically had all the treatments you are doing or considering, mostly alone, which isn't easy. Are you doing the induction chemo as an in-patient or as an out-patient? Although everyone is different, if you did well managing yourself with induction chemo, doing radiation, either IMRT, and more so with Protons may not be anymore difficult, unless you do chemo with it also, which the attached trial states may be a possibility, and then the toxicities also increase, and dependent on the type. I'm one that found the toxicities from chemo to be worse than radiation, but was still no walk in the park, and just tried to get through each day, that's it. The toxicities from radiation usually begin 10-14 days after starting treament, the worst being the set fee weeks, and after, but you may already have side effects from the chemo, can compound radiation effects.

When I stayed a Hope Lodge some of the patients had a friend or relative stay with them a few days or a week or so at a time, which helped.

IMRT can be done elsewhere, even following MDAndersons treatment plan, if mutually agreeable. One thing to consider is if you need further treatment, one day, hopefully not, being at one of the top CCC already helps since another institution may not want to accept you as a patient, if treated elsewhere. It has happened to me.

http://clinicaltrials.gov/ct2/show/NCT01893307

Good luck.

If you go with the IRMT (and possibly the proton therapy also), there will likely be at least a 2-3 week period where having help with shopping, food prep and driving to appointments would be a really good idea. You might MD Anderson about this - a reputable company that specializes in elder care would have caregivers that could accomodate these needs.
Also make sure you have sister and finance stay in contact with you via skype (or equivalent). It is critically important to maintain nutrition and especially avoid dehydration, and having your dear ones keeping an eye on you.
Even if you get the IMRT you will be at a top flight institution for your treatment. It's wonderful to have family available, but I think with a little creativity it can be managed. The American Cancer Society in Houston may have volunteers that could help.
Best wishes and congrats on the success the induction chemotherapy thus far!
Maria

Thank you very much, Maria. Much appreciated.

Thank you PaulB. That is the study.

Roger, you sound like a very intelligent and thoughtful guy, which puts you ahead of the game already. Like Uptown, I can't comment on Proton therapy. As far as IMRT, I had it done here in Los Angeles (dunno where you are in CA but the care in this area is top notch based on my experience). I live alone and took care of myself including driving to treatment every day, save for the last few when the fentanyl patch had me woozy. It was tough but doable, but of course I was living in my own little Hobbit hole in my own town. It would have been considerably more challenging in a strange town. But I'm also fairly self-reliant. There wasn't a whole lot I was able to do after about 10 days of treatment except come home and go back to bed. As long as I could chat with friends in the evening on the phone I was fairly content.

Once you know which treatment they plan for you why not post again. Well, post no matter what and keep asking questions. We're all here to help.

Roger, please add a signature next time you check in here. Its really a big help to fellow members in having your history at a glance without having to go back thru all your posts (most wont bother and just wont reply). I sent you a private message (PM) when you joined with detailed info on how to make the signature included in a link.

Thank you!

Thanks a lot David2.

ChristineB
I guess I lost that email. Could you tell me how to "add a signature". I can't find signature when I search the site.
In the meantime, here is my cut and paste.
Thank you RogerP
_______________________

SCC BOT with bilateral lymph node tumors - Stage IV
Dx 7/10/14
Biopsy shows HPV marker
Non-smoker, non-drinker
Came to MD Anderson a CCC on 7/24/14
PET did not show metastasis 8/2/14
Began induction chemo 8/10/14 Carboplatin, Paclitaxel and Cetuximab
Completed induction chemo 9/22/14
Otherwise healthy 67 year old male from La Selva Beach, CA

The "Posting Etiquette" thread has the info to help new members learn to navigate the forum and add a signature.

Posting Etiquette thread including signature instructions

THANKS!!!!

PaulB, thanks for all your insights. I took the chemo as an outpatient. I was basically in bed with fatigue 3 to 4 days a week, progressively worse toward the end. I had a severe rash on my face and chest from the Cetuximab, which Doc and nurse said indicated it was working. Due to the rash, I only received Cetuximab 3 of the 6 chemo sessions.
________________________________

SCC BOT with bilateral lymph node tumors - Stage IV
Dx 7/10/14
Biopsy shows HPV marker
Non-smoker, non-drinker
Came to MD Anderson a CCC on 7/24/14
PET did not show metastasis 8/2/14
Began induction chemo 8/10/14 Carboplatin, Paclitaxel and Cetuximab
Completed induction chemo 9/22/14
Otherwise healthy 67 year old male from La Selva Beach, CA

ChristineB, Got it. Thanks for your help.

Roger, you did better than me. 5 days of in-patient IC, Taxotere, Cisplatin, 5-FU knocked me out, almost for good lol. Strange though, cause I had more chemo, surgery, and radiation to follow with lesser problems. I did Erbitux, I felt like an itch ball. Didn't get as much a rash on my face than I did on my arms, legs, scalp, but that's the association with it working.

All the best.