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....

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, 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

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, 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.

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.

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

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.

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.

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

Darrell,
Your post to Karen left me a little confused, so I felt compelled to respond lest others be confused also.

First off, upgrade to IMRT is one of the largest mass upgrades to therapeutic linear accelerators going on in the US today. Since it's introduction in 1995 or so, it has proven itself as a safe and effective means of treatment and mitigating toxic side effects and healthy tissue damage. Some patients have actually led somewhat normal lives during the whole treatment process. As far as comparing technologies, they both have their place in the scheme of things. XRT is the technology of choice for poorly differentiated tumors. IMRT is a precision delivery system. Both require careful treatment planning and CT's and/or MRI data. It's the difference between using a "shotgun" approach vs. using "sniper bullets". Certain cancers require a "shotgun" approach.

Secondly, we on the boards generally always recommend going to a NCCN/NCI member comprehensive cancer center to mitigate the impact of human error and have access to the best treatment possibilities. It might be more costly and less convenient but this may be your ONLY SHOT. Mistakes made in cancer treatment or diagnosis can cost you your life. Like they say in AA "you must be willing to go to any lengths" and that "half measures avail us nothing". It has been proven medically that survival odds are improved, sometimes somewhat dramatically, when going to a hospital that specializes in that particular condition. ALL cancer treatment is experimental to some degree and changes to improve outcome are constantly being made, in fact, clinical trials are often the best chance at a favorable outcome (this per the NCCN oncology practice guidelines).

I would never choose door #1,#2 or #3 without knowing full well the exact ramifications of any treatment choices.

My personal thought process was very simple:
1. What will give me the greatest odds for survival?
2. What will afford the best quality of life?
3. How can I access the best doctors?

By all means ask lots of question, challenge the doctors, be your own medical advocate. Get second and third opinions. There have some posts here recently demonstrating the extreme value in that. Remember that it is typically called a "medical art" NOT "medical science". Even the experts in the NCCN disagree often, so that each patient must ultimately decide for themselves the best possible path to take. It is vital to have a "comfort" level with your medical team.

Never having any seen any data to suggest additional mortality due to "human error", I would be remiss to add any additional level of fear to persons visiting the site not based on hard evidence. I don't doubt that human error doesn't play a role but that's the nature of life.

As I said in an ealier post, I realize that you are probably committed to your treatment protocol at this point, this is more for the benefit of others following this thread.

What we attempt to do on the boards here is not so much to give advice but to equip patients and caregivers with the resources to ask the right questions and discover all of the options available to choose from.