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Describe your treatment regime, i.e. what stuff, how much, and how often?

D Lewis's picture
D Lewis
Posts: 1547
Joined: Jan 2010

Hey, insurance finally said yes, and I get my PET-CT Monday, and tonsils removed, scoping, and many biopsies on Tuesday. I guess that is my scoping and staging phase? All we know so far is that the one 3-cm lymph node taken from the neck was mets SCC, and my MRI showed nothing. Here's hoping for more information!

I know I'm still a bit ahead of the game, but I want to start reading up on radiation, and the various doses and methodologies by which it is administered. Also, the various chemotherapy agents, and how each one works. Your answers will guide me to what I should be reading first.

Is all radiation therapy these days done by IMRT? It sounds like some folks just get radiation, some get radiation and chemo concurrently, and others get another follow-up round of chemo after. Some of you get chemo intermittently, i.e., only on certain days of your radiation? Some of you get continuous chemo via pumps for hours or days at a time? Some folks get induction chemo? And then, there's the whole sticky question of Amiphostine... (did I spell that right?) I know all of this is ultimately between me and my doctors. I want to know what all the possibilities are.

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

All very good questions: I had NPC and the first time I did treatment was in 2003, I was giving 180rad of radiations for 35 days with no Chemo, because I was told I did not need it. Then in 2004 it came back and went into the lymph node in the neck as well as back into the sinus. I then had to take radiation again this time with Chemo, I took 1200rads of radiation twice a day for 35 days, I don’t remember what chemo it was, all I remember is I did not like it.

I was also giving the amifostine the first time but not the second, not sure why, I do have about 50% of my salivary glands working, so just maybe the amifostine does work.

Hope this helps you, take care

Landranger25's picture
Landranger25
Posts: 208
Joined: Nov 2009

I was diagnosed with Stage IV BOT with Mets to one lymph node. Exploratory surgery and tonsilectomy scheduled first. Ended up keeping my tonsils but Doc looked everywhere for add'l cancer. Found only 3 cm. tumor BOT. Next had port and feeding tube put in. Then first week of chemo. Started on a Monday, 8 hours Cisplatin infusion all day. Left Cancer Center at the end of the day with a pump for 96 hour continuous infusion of 5FU. Started rads the next day, 33 continuous rads with no Saturday or Sundays. After 1st week of chemo got 2 week break while continuing the rads. Then 2nd week of chemo same as first. 2 weeks off again and final/3rd week of chemo same as first 2. Like Hondo, I did not like chemo either. 75 total Gy at end of rads. I am 4 months post treatment and doing really well. I can eat whatever I want and saliva is slowly returning. Physical exams look good for no cancer with affected tissue slowly healing Not all normal and rosey but the alternative considered, I'm doing good. Good luck.

Mike

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

Diagnosed BOT IV - two nodes involved. Open biopsies and rt. tonsil (disease-free) taken 10-26-09. Began three rounds of Induction chemo (3 weeks each round) 11/19/09 (PICC line installed that morning). Day one of each round was all-day chemo at cancer center, receiving hydration, steroids, Benadryl and nausea meds before cisplatin and taxotere. Afterward, was hooked up to 5FU fanny pack to receive chemo continuously for 5 days each induction chemo round. PEG (feeding) tube installed Christmas Eve, 2009.

Began concurrent chemo-radiation Jan. 25, 2010. Weekly chemo (carboplatin) with steroids and nausea meds (2 hours). Daily (Monday - Friday) Amiphostine injections (2 injections about 30 minutes before 15 minute radiation treatments). Take one anti-nausea pill daily before injections. Will have 72 total Gy at end of radiation. Daily (Mon-Fri) weigh-ins. Blood pressure checked 6 times on Wednesdays; 4 times other days (Amiphostine sometimes causes bp drop - no problems for me so far). Blood work done on Wednesdays to check WBC and Creatinine (kidney) functions. Fluid intake tracked Sunday - Thursday.

Added Benadryl to mix yesterday (developed a common skin reaction to Amiphostine). If Benadryl helps with skin reaction, will continue Amiphostine injections, but switch injection site from arms to stomach for a while.

I've done 14 of my 35 treatments, can still eat and swallow, but sense of taste is nearly completely gone for now. I have a constant sore (not painful) throat at this point.

Hope this info helps you prepare yourself.
- Pam

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

From your post you sound like you are doing great, keep hanging in there. I remember having to drink so much water while taking amiphostine but into the 4th or 5th week I could not swallow any more and had to take it the old fashion way (IV).

All the best to you.

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

For the encouragement. My arms (and now stomach) aren't looking good - I'm afraid they may stop the amiphostine injections. But, yes, my doctors say I'm withstanding treatment very well. How did IV hydration go for you? I have a PEG, so can put some water in that way if I can't swallow, but I get full really fast, and am concerned I won't be able to get in as much water as I need if I'm putting in 6 cans of formula a day. I've been told that IV hydration is always available to me if I feel I need it.

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

I did not use the PEG and had a very hard time eating and drinking, the IV hydration was one of the best things I did do as I was becoming de-hydrated and just needed the extra water in the blood. The only bad thing about it was it took an extra 45min everyday to do before taking the amiphostine. I do remember the arm problems they were always so sore and bruised looking; not must you can do but alternate the areas of the injections. I did hear that there was a way of taking the amiphostine in the IV you might want to check on that with your doctor.

Hope that helps you, take care

D Lewis's picture
D Lewis
Posts: 1547
Joined: Jan 2010

Thanks, Pam. This is really detailed. It also seems do-able. I hope it goes as well for me. Here's hoping things go smoothly all the way to # 35.

Deb L

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

Deb,

Not all treatment facilities use IMRT (mine does, and it's not a major center; it's a cancer center, not comprehensive cancer center). Your doctors can tell you what's available.

I want to give you one warning on the tonsillectomy - - just a heads-up. My uvula (sp? - hanging down thing at the back of your mouth) really swelled up after my tonsillectomy. Dr did not let me know it would get so big - I was frightened and distressed, because I was not prepared mentally, and thought it would block my air flow. It did not, at any time, endanger my ability to breathe - I just didn't expect it to balloon (which happened, of course, after office hours), and it really concerned me.

Get your game clothes on and do this thing, Deb.

- Pam

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

i was very advanced i had a lymphnode the size of a lemon and a large tonsil into base of tongue tumor. I was misdiagnosed for 4 months ,they thought i had tuberculocus lymphendentis...when they finally decided it was scc cancer ..
So i got 6 weeks of induction chemo Taxol and Carboplatin and Erbitux all together once a week for 6 weeks ...
Then i got 7 weeks of radiation with double radiation on fridays plus i got Cisplatin chemo daily during weeks 1,4 and 7
Then i got a radical neck dissection ....
I am a year and a half out and am doing great im 53 and might be in better shape now than i was before this all started..
I got a port put in and did my own IV fluids at home when things got bad weeks 4 thru 7 of radiation and the few weeks after..
I loved my peg tube i used a feeding pump and all sorts of vitamin vegetable protein mixes...
The more food and water you can get in you the better you feel...
I also have a 3 year old son who keep me moving no matter how bad your hurting if your child needs something you move and the more you move and the more food and fluids you get in you the faster you get better... if my wife wanted something id tell her where to go.. if the house was on fire i probibly would have laid there but if my son wanted or needed me i moved no mater how bad i felt
The mucous for 3 or 4 weeks after the radiation was the worst... but if you get your pain meds right and stay ahead of the pain
and get that food and fluid in you.. you can do it...
Keep asking questions...

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

i was very advanced i had a lymphnode the size of a lemon and a large tonsil into base of tongue tumor. I was misdiagnosed for 4 months ,they thought i had tuberculocus lymphendentis...when they finally decided it was scc cancer ..
So i got 6 weeks of induction chemo Taxol and Carboplatin and Erbitux all together once a week for 6 weeks ...
Then i got 7 weeks of radiation with double radiation on fridays plus i got Cisplatin chemo daily during weeks 1,4 and 7
Then i got a radical neck dissection ....
I am a year and a half out and am doing great im 53 and might be in better shape now than i was before this all started..
I got a port put in and did my own IV fluids at home when things got bad weeks 4 thru 7 of radiation and the few weeks after..
I loved my peg tube i used a feeding pump and all sorts of vitamin vegetable protein mixes...
The more food and water you can get in you the better you feel...
I also have a 3 year old son who keep me moving no matter how bad your hurting if your child needs something you move and the more you move and the more food and fluids you get in you the faster you get better... if my wife wanted something id tell her where to go.. if the house was on fire i probibly would have laid there but if my son wanted or needed me i moved no mater how bad i felt
The mucous for 3 or 4 weeks after the radiation was the worst... but if you get your pain meds right and stay ahead of the pain
and get that food and fluid in you.. you can do it...
Keep asking questions...

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

I am glad you are finally getting your PET scan. The insurance company shouldnt have taken so long to approve it. Mine did it in just one phone call from my ENT office. Now I had it and have to wait till Wednesday for results.
You sound so positive about all of this. I am not doing so good and I havent had anykind of treatment yet, just tests. I have been reading all the posts and they have been helpful.
Mary

D Lewis's picture
D Lewis
Posts: 1547
Joined: Jan 2010

Keep your chin up, girl. I sent you a private email.

Deb L.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi Mary. I sent you a PM but have not heard back from you. I am in Petaluma and can meet up with you to talk if you wish.

I hope you're anxiety is abating. I very much recommend the book AntiCancer (available at Copperfield's in SR or Petaluma). There are chapters on how to deal with the fear ad a lot on what cancer is and how to build your body to fight it through nutrition and other lifestyle changes.

Warmly,

Mick

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

Pegged and ported. Three Dentist cleanings and exams. 39 IMRT rads with 3 regimes of Cisplatin every 21 days.

I keep hearing proton radiation being the newest and greatest advertised on the radio. IMRT was the standard when I went through last year.

D Lewis's picture
D Lewis
Posts: 1547
Joined: Jan 2010

Proton therapy. The one web page I found that described it, and it was something very much like proton-therapy.org, cited only reports in the media, rather than scientific studies. Apparently the equipment needed to generate the proton beam is so expensive, not many places can afford it. Another site noted that the medical community is not yet convinced that it is a better approach.

Deb L

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

Hey Deb,
Check out www.ro-journal.com/content/3/1/4/

Steve

D Lewis's picture
D Lewis
Posts: 1547
Joined: Jan 2010

I enjoy reading the actual scientific studies. Must be the scientist in me.

I note, however, that the research on this one was done in Germany and Sweden. Also telling is the statement early in the article..."The practicality of IMPT in NPC deserves further exploration when this technique becomes available on wider clinical scale."

I've read that there are perhaps two or three facilities in the U.S. that are currently able to offer IMPT. One participant on these forums mentioned that they might go to UCSF specifically for this treatment. It may be that it is available there? I will poke around on the UCSF web page and see if it is mentioned.

warm regards,

Deb L.

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

Hi Deb,
Really it's a little too scientific for me. But I understood enough to get a grasp of the results. It does seem better, but just not available enough yet. I inquired about it with my RO and he said while it is promising, research and clinical trials are still being done.

Saw your post on another thread regarding the scan, Let us know what you discover.
Hang in there, my thoughts and prayers are with you.

Steve

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

Right Tonsil, one lymphnode stage III SCC HPV+
Nine Weeks (three cycles)
- Cisplaten
- Taxotere
- 5FU
- Neulasta (once each cycle)

Seven Weeks (every week)
- Carboplaten
- M-F 35 days
- Amifostine
- Radiation

Post treatment
- Port Flushing every 6 - 8 weeks
- ENT scoped
- CT every 3 - 4 months
- Blood Work and Labs

Radiology MD
- Consultation and follow-up

That's pretty much where I'm at so far....

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