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#37125 03-25-2004 11:00 AM
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I got some valuable advice here about getting a peg tube short term into radiation therapy.
I went to a large group of gastro's, got registered as a patient, consulted with a physician, and became a card carrying registered patient of this group.
The Doc I saw assured me that at anytime in my treatment a PEG tube should be required for nourishment, that he or one of his Seventeen partners would answer that need within 24 hours.
An Alternative to elective PEG..
Darrell

T3, N1, M0, Squamous Cell Carcinoma base of tongue. 36 Radiation treatments and 8 Chemo sessions. current 2 radiation treatments under belt. Only side effect so far is FROG THROAT.... smile laugh


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
#37126 03-25-2004 11:30 AM
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Hello Darrell,

I think that is very sensable!

I can't remember if you are getting IMRT or not. I have a lengthy description of various blender foods you can make at home. Bottom line, you can make any meal into virtual liquid if and when you need to. Let me know and I'll get it to you.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#37127 03-25-2004 11:40 AM
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Mark, My direct email address is [email protected] by all means send me the recipes.
I am not privy to a linear accelerator with IMRT capabilities. My linear accelerator is the old style with the lead blocks to aim the beam. A little more healtrhy tissue loss but achieving the same results.

Darrell


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
#37128 03-25-2004 12:21 PM
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Hi Darrell,
does that mean that you don't have access to an IMRT equiped LINAC or that you are not a candidate for it? If you ARE a candidate for it it will significantly improve your post Tx quality of life issues. It would be well worth your while to seek it out.

PS. The primary collimation system on XRT LINACS is typically made of pure tungsten bricks that are a little larger than a stick of butter. They are amazingly heavy, weighing in at over 100 lbs. each. They can further define the beam with different shadow trays, applicators and beam blocking devices.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#37129 03-26-2004 12:41 AM
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Gary, I feel sure that somewhere in Memphis, Tn there is a Linac with the IMRT hardware but my radiation Oncologist doesn't ,as yet, have one. My technician has to change blocks on each shot and alignment with lasers. I didn't know those blocks were soo heavy, My tech is a small person weighing in at less than a hundred ponds. I will call her superwoman from now on..
My chemo regimen is Taxol and Carboplatin 8 Treatments. Radiation is Total 5250gy spread out over 36 treatments.


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
#37130 03-26-2004 07:14 AM
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Between you and me Darrell, my HMO had me scheduled for XRT and I politely refused, stating that it really be better for all concerned to authorize IMRT instead, which they graciously relented to. I ended up, not only at UCSFCCC (the 7th highest rated hospital in the US), but with one of the top radiation oncologists in the world. I have salivary function back today which would have never happened with XRT.

I realize that you are probably committed at point but this post may help others to push for the best technology available. You never did state whether you were even a candidate for IMRT so maybe this is your only treatment option. In some instances XRT is the treatment modality of choice, especially where the cancer is also in the nodes or multiple sites.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#37131 03-26-2004 11:52 AM
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Make certain you get on whatever medicine is available these days to protect your saliva glands. They also may even be able to make stents to help protect them. I forgot to look where your cancer is, but I also had a stent for my tongue to help protect it.

I suspect it is now too late, but if you are eligible for IMRT, I would have pushed to get to site with it. The less good tissue they radiate, the better. You can only have radiation to an area once, so if it gets zapped now, they can't do it later if you have a reoccurence.

Also make certain you get a full thyroid panel before you start radiation so you have a base line in case your thyroid goes south at some later date. One of the other lovely side effects of radiation.

I have been told that drinking lots of water helps the body eliminate the side effects of radiation. I had to drink ice cold bottled water and be careful of the brand.

Good luck and keep us posted when you need support or help.

Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
#37132 03-26-2004 03:04 PM
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Today I had Chemo and radiation. As yet, no side effects from either. But I have had only 3 of 36 radiation treatments and 1 Chemo session. Salivary glands have been affected, but I have plenty of spit pills, moisteners, enzymes, etc.


Stage 3, T3,N1,M0. Squamous Cell Carcinoma base of tongue. 8 Chemo sessions Taxol and Carboplatin, Radiation is Linac, Laser Guided, with blocks and stints.


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
#37133 03-26-2004 04:56 PM
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I wish I had done more research or had come across this forum before I had had my treatment. I was not given any option of the type of treatment. I am still not sure whether it is because IMRT was not available at my hospital, or I was not eligible or because the doctors thought that the traditional one would give me the best effect. I will ask my oncologist next Wednesday when I have my medical follow up. I hope I remember because every time I saw my oncologist, when he was happy with my recovery progress, I was so happy that I forgot what I wanted to ask him! Darrell, not all side effects appear so soon and in my case, I only realised my saliva glands being damaged gradually two months after my treatment. Before that it was the continuous mucous, burning of the neck skin and loss of voice upsetting me. When my colleagues visited me (one month post treatment), I could talk with them ( my voice returned at three weeks post treatment) without taking any water for 2 hours. I once thought that I was lucky enough to have my saliva glands saved. But I am wrong, the side effects accumulated and now without a sip of water, I cannot talk for more than 5 minutes. Gary, I really envy you.

Karen stage 4 tonsil cancer diagnosed in 9/01.


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
#37134 03-27-2004 03:50 AM
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Karenng, According to peple I have talked to in the industry. IMRT technology is only as good as the physicist that enters the numbers in the computer. This could be positive or negative. Imrt is superior, no doubt about that but you are still in the hands of humans and humans make mistakes, non of us are infalable. Whether it's old technology or new technology, be assertive and ask questions even if you think they are dumb...
Darrell


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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