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#185348 09-21-2014 09:31 AM
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RogerP Offline OP
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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
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
Completed chemo and proton radiation 11/13/14
Follow up checkups 1/15, 5/15, 8/15 12/15 5/17 Still Cancer free!
Otherwise healthy 67 year old male from La Selva Beach, CA….now almost 70!


RogerP #185350 09-21-2014 01:54 PM
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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.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
RogerP #185354 09-21-2014 05:06 PM
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Posts: 13
RogerP Offline OP
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Hi Uptown,
Thanks very much for your input...much appreciated.


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
Completed chemo and proton radiation 11/13/14
Follow up checkups 1/15, 5/15, 8/15 12/15 5/17 Still Cancer free!
Otherwise healthy 67 year old male from La Selva Beach, CA….now almost 70!


RogerP #185358 09-21-2014 06:14 PM
Joined: Jul 2012
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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.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






RogerP #185359 09-21-2014 06:27 PM
Joined: Jul 2011
Posts: 945
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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


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
RogerP #185360 09-21-2014 06:38 PM
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Posts: 13
RogerP Offline OP
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Thank you very much, Maria. Much appreciated.


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
Completed chemo and proton radiation 11/13/14
Follow up checkups 1/15, 5/15, 8/15 12/15 5/17 Still Cancer free!
Otherwise healthy 67 year old male from La Selva Beach, CA….now almost 70!


RogerP #185361 09-21-2014 06:57 PM
Joined: Jul 2014
Posts: 13
RogerP Offline OP
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Posts: 13
Thank you PaulB. That is the study.


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
Completed chemo and proton radiation 11/13/14
Follow up checkups 1/15, 5/15, 8/15 12/15 5/17 Still Cancer free!
Otherwise healthy 67 year old male from La Selva Beach, CA….now almost 70!


RogerP #185375 09-22-2014 11:04 AM
Joined: Jul 2009
Posts: 1,406
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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.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
RogerP #185376 09-22-2014 11:36 AM
Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
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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!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
RogerP #185379 09-22-2014 12:08 PM
Joined: Jul 2014
Posts: 13
RogerP Offline OP
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Posts: 13
Thanks a lot David2.


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
Completed chemo and proton radiation 11/13/14
Follow up checkups 1/15, 5/15, 8/15 12/15 5/17 Still Cancer free!
Otherwise healthy 67 year old male from La Selva Beach, CA….now almost 70!


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