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Just radiation

rmkbrad
Posts: 177
Joined: Dec 2009

I just got back from San Francisco, after talking with the Radiologiest. Their plan is to treat me with just radiation since I am a Kidney transplant recepiant. Most if not all froms of chemo that we have discussed cause renal rejection. The doc's said that in the last two weeks of seven that I will be having radiation twice a day, I also have andicarcinoma in my esophagus T1, but T3 in my left tonsil which were remove Feb,4. I live next to Lake Tahoe and my seven weeks of treatment are to be in San Francisco, I am scared to go through this and be out of my element. I have three young sons and a great wife that I hate to be away from, sorry for running on just venting. Thoughts or suggestions welcome.

Brad

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Brad,

Glad you made it to the discussion boards here. Sorry, but I won't be of much help to you - I have no knowledge of andicarcinoma. Having said that, I'm sure it's just a matter of time 'til someone will post who will be more useful.

Sorry, too, that you have to do treatments away from home and family. Will you be on your own, or have someone with you in San Francisco? Will you be staying at a treatment facility, or in temporary housing near your treatment center?

I can tell you from personal experience [I'm a base of tongue cancer patient in week 4 of chemo-radiation; 22 (of 35) radiation sessions completed] that this site is a HUGE help, whether you need information, a morale boost, or a distraction. There are lots of great people here who can and will provide lots of help.

Let us know how you're doing.

rmkbrad
Posts: 177
Joined: Dec 2009

I have squamish cell carcinoma of the tonsil, I will try to do it myself so that my kids lifes will not be interupted. As long as I can, then my wife will come down and help. I will be staying at the VA hospital hoptel and taking a bus to UCSF for treatment. I plan on driving home on weekends, 4.5 hours. Until I can't then my wife will shuttle me. What is your strength like in week 4, can you still drive, I am faily young 44 and very healthy. Thanks for the input. They will be doing radiation on both sides of my neck and my esophagus at the same time.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

i had my step mom that drove me for radiation. i had to take benadryl for the amophostine shots. i would get extremely tired after radiation, and i know i probably would have had trouble driving home myself. my radiation side effects started quickly, and soon i would end up vomiting after radiation, which when your mouth is a bloody mess, is not pleasant. i would get home, my step mom would put me in bed and i would pass out for a couple of hours. i was 41, and in good health. i also just had radiation, refused chemo. By week 4 there was no way i could drive, i had to keep a bucket in the car. i was extremely fatigued. to the point of having trouble just getting out of bed to do routine health needs by the end.

feel free to ask anything you need to know, and we will tell you, what we experienced. I was not prepared fully for how painful radiation would be, and for the possible lasting side effects.

I wish you well, and hope your treatment goes by quickly and with minimal side effects for you.

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

Brad, I'm so sorry that you have to be away from your family b/c you could really use wife thru this. YOu should feel ok to drive from now but as your neck becomes burned, you will need to be driven b/c you won't be able to turn your head side to side w/o pain, at least that is how it went for me. You can put aquaphor on the burn but you have to take it off for each trmnt. Do you have a private email I can send something to? Also, I was wondering if the VA Hosp is where your getting you trmnts?
You and your family will be in my prayers.
God Bless,
Debbie

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

I was able to drive all the way through my first treatment but it was only a 45 min ride each way. I believe 4.5 hour might be a little to much, you will need to see how affected you are about the 4th week and go from there.

All the best to you

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

Brad

Radiation unless some new techology is pretty straight forward stuff. You can present a local oncoman with your doctors plan and they can literally plug in the coordinates and the machine does the rest. It's a big binder with instructions on it to the technicians, they just follow along. You won't get any different results. Since its so standardized its actually quite common and your doctor should have zero objection.

Now if you need the VA facility for insurance reasons then your stuck. Or if you just love this Dr. so much that you wouldn't go elsewhere, well then that is also worth it psychologically. Just be aware that people often get the radiation locally and then follow up with possibly a reknown surgeon elseware. There are no rules here. You can call lots of the shots. without chemo it seems even easier to coordinnate locally. Best of luck. Ask your Dr. if its possible. family is a big deal during this.

Dazey
Posts: 86
Joined: Sep 2009

I also had only radiation, IMRT 30 treatments - six weeks. I worked full time while undergoing treatment and drove myself to and from treatment daily (45 minutes each way) except for the last week when I had family visiting and they wanted to drive. This worked for me - everyone is different as I am sure you will or have heard. Dazey

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Have you asked the people where you're getting the rads if they know of any temporary places you could stay during treatment? The drive will be a hassle, Brad; but, you know, you might find such time to and from as very memorable. Still, it seems someone where you're getting treatment should be able to help with this.

The rad, alone, for me was no big deal compared to the times when I was getting both the Chemo and rads. Cannot advise, though. Where I went thru treatment was only about 10 blocks away from where I live, and I was able to drive myself for all but about 3 1/2 weeks of it (the times of morph and ice). But it was such a short distance, compared to your drive.

As for the specifics, with your med history- I do understand why you can't have Chemo, as it really can get nasty. And, there are standards in place as to how much of the stuff they can put into anybody without running the risk of damage to the liver, kidneys, etc. The major problem with the rads is that it can actually cause more/secondary C, so it also has it's limits.

Brad- I don't have to tell you this ain't the best of times for you. If you trust your Drs., though, I would advise you to agree with what they say is necessary. The best of wishes, and my Prayers, Brad. I can only ask you to

Believe.

kcass

D Lewis's picture
D Lewis
Posts: 1546
Joined: Jan 2010

Sounds like you were diagnosed and then your treatment plan was developed in San Francisco. Is there a specific reason for staying in San Francisco for treatment? I just had my meeting with the Stanford Cancer Center Tumor Board, they reviewed my scans and gave me a treatment plan, and they said that there were several other Cancer Centers closer to home where I could receive adequate treatment. One of the places mentioned was "Sierra Tahoe." I'm in the Sierra foothills on the west side, so Tahoe is a bit out of the way for me. The chief oncology physician was quite firm that the quality of radiation that I would receive was in good part dependent upon the skills of the attending Radiation Oncologist and he pretty much knows all the local ones. He's asked me to give him a list of facilities near me... Sonora, Modesto, Stockton, etc., and the names of the RO's there, and he's going to weigh their qualifications and experience against the daily commute I would have to get there. He spoke very favorably about Sierra Tahoe.

Best wishes to you in your continuing quest.

Deb L.

rmkbrad
Posts: 177
Joined: Dec 2009

It all started out as I had T1 esophagus cancer, the doctors here in Carson City were not moving fast enough for me, I am a service connected disabled veteran and so I contacted my primary care doc at the VA and the ball started to roll very quickly. Since I am a kidney transplant recepiant the Reno doctors wanted to send me to San Francisco to see the kidney transplant specialist at the va hospital which is the same doctors at UCSF, my first appointment I had a PET scan, they found a stage 4 tumor in my left tonsil, A week later I had both tonsils and some of my soft palet and some other stuff removed. Since I have two different cancers they refered me to a head and neck specalist at UCSF, Doctor Sue Yom. She studied at Anderson one of the leading cancer center in the country. Now the VA will provide me lodging and shuttle me to and from the University. I just have to come home on weekends, my choice. The whole game plan was put into place because of my kidney transplant and the two different types of cancer. Monday I go to the Reno VA to have the feeding tube put in, and back to San Francisco sometime next week for the mask fitting. A little nervous about the feeding tube. So this is my complete story, sorry for the confusion. I wish I could have treatment closer to home, it would be easyer to deal with the diet and a comfort zone to rest. If it is to stressfull I might request the treatments to be moved, I am doing IMRT to both sides of my neck and my esophagus.

Brad

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

I was in the same situation like you and was required to have just over 8 weeks of radiation treatment. There are no radiation facilities on our island and had to go to Honolulu for treatment.

I decided to commute by flying in the morning and returning in the afternoon. I noticed I was becoming weaker and finally moved to Honolulu for the rest of my treatment after week four. I had later volunteered for chemo treatment. After two sessions, I became very sick and gave up on chemo.

I do not know if the nausea was a result of the chemo, but I would guess that radiation contributed to it too. I do remember one time driving back to the hotel and had to immediately stop. Luckily, I was not on the freeway. My drive was less than 10 miles one way.

As a former military man, you must have been separated from your family in periods longer than your projected treatment period. For your family's sake, I believe it would be better to stay back when you determine your strength is waning rather than risk being on the road in your condition.

Your sexual drive will slowly diminish so do not worry. Hey, just kidding. I just wanted to interject some laughter in these serious periods of our lives.

The problem may be that you are alone in those final couple of weeks. I was in sad shape and laid in bed except for the period when we went for treatment. Fortunately, my wife was with me.

I wish you the very best.

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

The tube is no big deal, Brad. Trust me. Still have mine, over a year after it was put in. And, you may find it of critical necessity, as I did. Do not want to slight anyone, but I drove myself home after mine was installed, outpatient. They put me under, and all, I had to have a co-worker walk out of the hospital with me, but he only walked me to my car. Not a big deal. That tube was a Godsend, Brad. I was reduced to a diet of 4.0 formula via the tube, and morph and ice, and magic mouthwash, by the start of week #2. They installed my Port and PEG in seperate outpatient Ops, and I drove myself home after both- not that big of a deal, though those drives were only a couple miles away from my house (had to cross the Mississippi River each time, though).

The chemo is the worst of it, Brad. I got Cisplatin and Flourouracil. Am aware of another who had a recurrence in the jaw. He was in his 80s, and the U of Iowa deemed him too old to get Chemo, but not too old to get radiation. I was given Compazine for the vomits, but there were only a couple days that I had to take any of those pills. Hope the same for you.

Hope this helps.

kcass

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

I really enjoyed your humor!!! We all need that sometimes!
God Bless,
Debbie

rmkbrad
Posts: 177
Joined: Dec 2009

I get the peg tube installed on Monday, I have to stay over and then go home Tuesday morning. I asked the VA in San Francisco if I could have it installed in Reno, and Reno called me and that is where I am going, yaaa! I just want to get the whole radiation thing started, I can't be done with it until it starts. I get calles from work asking how treatment is going, I had my tonsils out 3 weeks ago and still meeting doctors. Anyway I am staying positive about this and just want to get the show on the road. Like I told the docs, I need 15 more years out of this body, anything more than that is a bonus. I have a three year old that is hell on wheels and I need to be around to raise him and my other two sons. Yeah I should have listened to my dip stick, it told me something was wrong three months ago, if I had only listened to it I might have caught this earlyer.

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Glad to hear it's getting started for you, Brad. Just try to take it all in stride. And the best of luck to you.

Believe.

kcass

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Brad,
I have just begun my treatment last week. Just wanted you to know that if I can help you, or if you have questions I am a little ahead of you so maybe I can help you if you need it.

Best,
Steve

rmkbrad
Posts: 177
Joined: Dec 2009

Got back from the Reno hospital today after having my feeding tube put in yesterday, still kind of hurts and my ab muscles really hurt. When the nurse flushed it this morning it gave me an upset stomach. How long before the tube begins to feel normal or does it ever? Go back down to San Francisco on Thursday for the mask fitting and trial run.

Brad

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Brad,

It takes only a few days for it to become a part of you. Mine really gave me the creeps at first, but I had no one show me how to flush it or anything. I came on here for advice and everyone helped me and now it is simply routine. Since you got some instruction, I think you will become accustomed to it quickly.

Best,
Steve

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Brad,

Did the nurse "push" the water in for your flush (with the plunger)? I found that (when I was in the hospital) I didn't feel queasy when one nurse just let gravity do its thing, and poured the water in the syringe, and let it flow in, but sometimes did get queasy when another nurse pushed the water in. I've also heard that water less than room temp gave some people problems. Also felt off when it was done on a full stomach.

It takes time to get used to. You'll get there. Do well.

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Pam M- never tried the gravity. I always flushed it with the plunger thing on the big syrine. Do it gradually. Not sure what it'd be like to have another put something into the tube, Pam- that might be the problem. I'm the only one who ever put anything into it- even when I was showed the ropes, it was for me to do. And that includes the 4 days at the start of week #6 in the hospital. Nurses did ask me, but I was in a very bad way, then, and told them to just get my formula. Might help if you just take charge and do it yourself. My tube was outpatient a couple weeks before I needed to use it, so that probably explains things.

Brad- just takes getting used-to, and it will. Had mine over a year, now, and will need to flush it tomorrow AM before work, due to my 3-month meeting with the Rad Dr. Last used in early-April/09. Your body also has to get used-to, so be on the lookout for signs of a problem, like infection. I had no such problem, but met someone in treatment who did.

Of note: when my Suppliers showed me the ropes on how to use the tube, I was told by them that if it ever gets clogged/stopped-up, then I should pour Coke (the Coca-Cola variety) into it. Only happened once, and the stuff works. FYI.

kcass

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Brad, what you said sounds normal. Mine hurt like heck the first day. The first doctor had it so tight I thought I would die. I spoke to the second doctor and he losened it and I felt a little better. My abs hurt too. It really hurt when I had to get out of the car after having it done. I walked a little bent over for a couple of days, but then I was okay.

If you get nauseus when flushing, or when and if you have to use it for nutrition, just remember to go slowly. If you have any problem with nausea, and it is not the formula,I would recommend getting a pump for overnight while sleeping. I wish that they would have done that for me before I lost 40 lbs. I had my doctors appointment yesterday and I went from 88 to 94 lbs! yay!

I hope that you won't need to use it, but it will certainly be a life saver if you do. I will have mine for a year coming up on march 15th. You will become accustomed to it quickly.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

6 pounds - keep up the good work. I know it was quite an effort for you; here's hoping you continue to put some on (for a while).

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

this pump has really helped me out. i am hoping for the day i don't need it, but meanwhile maybe putting on some weight will make it easier for my body to heal, and eventually i will actually be able to eat all the calories that i need. and hopefully taste them.

being that i had such severe side effects i always worry for people that opt to go thru treatment without a peg. most i spoke to during my treatment did get them in the beginning. the three that didn't two had them placed during treatment because they lost too much weight.

hoping for 6 more pounds this month. i am filling out my size 0 old navy diva jeans now. lol

rmkbrad
Posts: 177
Joined: Dec 2009

I flushed it myself today, I did it slower and did not have as much problem. The gross part is when I do the suckback and pull some of my stomach content out and then push in the water. Does everyone do this, I was told by the nurse to do so. I drive down to San Francisco tommorrow for the mask fitting and trial run, fun stuff 240 mile. Usually takes me 4.5 hours but last time I left on a Sunday evening and it took over 8 hours. I really hate traffic and I guess that is why I live in the country. Anyway thanks for the input. Has anyone heard or tried Graviola, I was reading on it today. Thoughts?

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

i don't know about the suckback thing, no one told me to do that. but i really was never shown what to do.

as far as graviola, i would not consider it. someone mentioned it to me when i first heard of my cancer. i looked it up through sloan - kettering.

http://www.mskcc.org/mskcc/html/69245.cfm

if that link doesn't come up, try googling or bing sloan-kettering - graviola. i understand it might have severe neurological side effects if i recall correctly.

blessings,
d

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