Anyone have any opinions about tomotherapy?
It looks pretty interesting. I'm thinking of trying to use this if I am diagnosed. I would think it might be good but I dunno about whether or not it might be too accurate and miss stuff they don't know is there. I would think that it might be ver good at reducing side effects however.
Thanks.

Forgot to mention here is a link http://www.cancercenter.com/pharyngeal-cancer/tomotherapy.cfm
I am thinking about going to this place for treatment as I live in Oklahoma and it's probably about 2 hours away. Anyone know if they would be very good, and what is a good way to research cancer treatment centers?
Thanks again!

Before you waste your money and possibly your life read this: http://www.quackwatch.org/02ConsumerProtection/FTCActions/ctca.html

Try a google search on NCCN or NCI for legitimate comprehensive cancer centers.

That blew my mind lol, thank you. I am still curious about tomotherapy however and wondering if anyone has had experience with it or knows someone who has.

TomoTherapy is a registered trademark for a instrument which combines IMRT and CT to better target the area to be radiated, and to reduce damage to surrounding tissues. It is used particularly for cancers in areas where important organs/tissues lie close to the tumor, e.g. prostate, brain, head/neck. Most of the top HNC centers have or are getting TomoTherapy -- Johns Hopkins, Sloan-Kettering, etc. It is considered the next development up from IMRT.

We are going up Tuesday to consult with rad onc at Hopkins (Dr. Lee) and to find out more about TomoTherapy which is on-line there, and will post more when we return.

Btw, the JH web site has a page on TomoTherapy.

Barry Cooper

I've spoken to the Chief of R&D at Tomo a few times so if you need ANYTHING, just let me know...their installations are currently concentrated in the West Coast regions, but there are several nationwide.

In California, they are only in the Southern half.

- City of Hope
- Long Beach Memorial
- Hoag (Newport)
and a couple in San Diego

You might look into Stanford's new Cyber Knife as well.

good luck!!

I have posted this here before when IMRT hit the mainstream, and this "further development" of IMRT is interesting. But the truth of it all is that for the first time radiation oncologists have to know anatomy as well as a surgeon. Mapping the shape, intensity, and duration of many, many beams around vital structures, salivary glands, neurovascular bundles, and more - like known routes of metastasis is not as easy as radiation oncology used to be 5 years ago. More than ever, it is the knowledge and skill of the practitioner that makes the new technology useful or not. There is going to be a learning curve, and IMRT is still in one in many ways in the H&N world, and this extension of IMRT is no different. Just because Hoag, or LB has the equipment, I wouldn't necessarily correlate that to also having the experienced staff that has seen the volumes of patients and eventually their long term results that you would get at MDACC or MSKCC.... the fact is they just don't have the patient volume, and the "best of the best" are frequently attracted to the major centers for obvious reasons. It is always part science and part art. Medicine in not exact, and an improved piece of technology does not an improved outcome yield without the physician knowledge and experience component.

Barry,
treatment planning for IMRT is usually always done with a 3D CT. Sometimes they will also use fusion with a CT and a PET scan. I seriously doubt that what you described is a "further development", but rather some marketing spin on the tried and true.

When got my treatment 2 years ago, most regional treatment centers were just getting the LINAC upgrades. My RO is the top IMRT doc in the US according to the Castle Top US Docs book. She had a lot tricks up her sleeve (like limiting the dose through the thyroid and irradiating many lymph areas and the left tonsil as well) which she used based on vast amounts of experience and huge patient volume. She's also a clinical professor of radation oncology.

One of the things you want to ask in choosing a treatment center is their mortality ratio.

Although IMRT has been around for over 10 years now it was initially developed for prostate cancer. So the H&N application didn't start until some years later.

The cyberknife is used mainly for inoperable brain tumors. They have one at UCSF as well.

Update on the Tomotherapy device. I checked out their site. It seems like a more efficient way to do planning/treatment and probably more idiot proof, especially in local, regional treatment centers where there is no centralized medical team. Other than efficiency and idiotproofness, I don't see a lot of difference between Tomotherapy and the IMRT that Siemens or Varian offers. Many of the treatment planning photos amd dose curve histograms were very similar.

But in a world where the boomers are just starting to show up with cancer now (like myself) and they are running people through radiation treatment centers like cattle (and it's only going to get worse as the younger boomers enter the profile) this device makes sense.

One other item, from a regulatory perspective, if the device was offering new "indications for use" other than what already exists then they would have to file a PMA (Pre-Market Approval) which would take years to get the device on the market.

The device is listed under Section 510(k) [PMN - Pre-Market Notification] of the Food, Drug, and Cosmetic Act (K042739)which means it is "substantially equivalent" to existing devices. This is typically a three month or less process - It took them 29 days to recieve FDA clearance to market. Their regulatory guy must be good.

http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfPMN/pmn.cfm?ID=16446

The major difference with tomo is that a CT scan is taken each day just before the radiation treatment starts and compared (by the system's computer) with the original simulation scan -- the computer then adjusts the IMRT radiation delivery to account for any changes in the location of the tumor(s) due to, say, weight loss, edema, or just normal day-to-day variation. Dr. Lee (our radiation oncologst at Hopkins) says that the device also allows the beams to be directed from more directions and he says it improves such things as sparing of the parotid gland (my notes have him saying that using regular IMRT he finds xerostomia reduced 50% over older EBR technologies and with Tomo, 66%. He uses amiphostine whenever possible, for further improvement). Since I have some rather significant upper end hearing loss, he wants to give me the Tomo as it will also allow him to avoid radiating my inner ears. (I will not be getting cisplatin for same reason).

Anyway, in again Monday for the simulation and meeting with the radiation nurse and more of the staff. A marathon session yesterday (7 am to 4 pm) so feeling both exhausted and somewhat encouraged. The Hopkins staff definitely are cognizant of patient's concerns re treatment and after-effects.

Lots of work being done there on HPV-related HNC (what they think I have) -- they took blood and tissue for testing. Survival rates for non-smoking patients appear to be better than the usual published results -- more like 2/3 after 5 years (their in-house data). They said it will help that I am (other than the cancer!) very healthy -- Dr. Forastiere said I was a perfect weight now BUT -- I should try to pack on some pounds before I start the chemoradiation as I will probably drop quite a bit of weight during the marathon.

A friend who heard about this sent me a huge cheescake -- should be good for about 10 pounds of bulking up!

Barry Cooper

DX 6/21/05, SCC, right tonsil and 1 cm base of tongue, T3N2bM0, Stage IV, tonsillectomy w/ negative margins except at b.o.t., no further treatment -- yet.

Refering to Michaels post in another thread about Tomotherapy and conventional IMRT being compared to 2 similar high performormance sports cars was a great analogy. The fact that the FDA declared it "substantially equivalent" is the tip off here. They have to treat to margins with radiation just like surgery so even with daily adjustments, there is still healthy tissue damage. One CT is equal to 3 years of background exposure to ambient radiation (this months Cure magazine has a chart), I guess because of the extreme ionizing radiation that it isn't really an issue here but I personally am glad that my follow up scans are MRI's.

Beam entry points will take the same abuse irregardless of the 2 different (yet similar) systems.

If you REALLY want a unique treatment then consider if you are a candidate for PBT, which is stands for Proton Beam Therapy. There is NO tissue damage with this technology, which uses a charged particle concept instead of ionizing radiation (the charged particle reaches it full potential at the tumor itself). It is SO accurate that they give IMRT with it to provide safer margins. (Sorry Michael - I guess that means another trip to Loma Linda in So. Cal. or maybe I think there is one in Indiana) See http://www.llu.edu/proton/ MDACCC thinks highly enough about it to invest 200 million in a special facility just for it.

One has to ask - is a daily CT REALLY necessary. They are just now discovering additional risks from x-rays that they didn't recognize before. Think back when they used to expose servicemen to atomic bomb fallout back in the 40's, not understanding the risks (they all died). We're still learning about radiation exposure.

Tomo sounds great on the surface but I rhink will take a few more years of data collection and experience in general use to determine and shake out completely all of the safety and efficacy issues.

It took the company 29 days to obtain FDA clearance. You can bet that the CT exposure issue wasn't even mentioned.

The comment by the doc at Hopkins is not specific enough. He mentions EBR which is generic for ionizing radiation in general. Most RO's will tell you that significanct salivary function can be saved with IMRT in general (I have at least 66% of my salivary function back). It's all about location. If you have a tonsil cancer you will lose the parotid behind the tonsil - it's unavoidable. They are simply too close together.

All medical devices are balanced out by risk/benefit and that is the bottom line. Medical devices that go the 510(k) route have minimal data for safety and efficacy. Now I'm going to ask my Physicist buddy in the Office of Device Evaluation at the FDA (who was probably the lead reviewer) if that was ever brought up as a consideration.

If there was truly a "major difference" then the FDA would have required a PMA and a LOT more science would have had to go into the submission. Other than that it reeks of marketing mumbo jumbo to me.

Protom beam therapy is also available at Harvard -- this and Loma Linda are the only centers I believe. It has NOT proven better in controlling prostate cancer and in fact, the stats are not as good as for combined IMRT / brachytherapy for this particular disease. On the surface it sounds as if it should be better, but the long-term follow-up is apparently a bit disappointing. Lots of controversy on the prostate web sites about this technology (which is also very expensive -- $100K for PC treatment so lots of insurances won't cover. )

Having said that, lots of guys have used it for PC and swear by its accuracy and tissue/organ preservation ability -- important QOL issues, so obviously there are two sides to this.

And as regards Tomo, guess I will rely on the advice & expertise of the docs at Hopkins -- they want me to have it for my own benefit even though it would be simpler time-wise if I just used the IMRT device. Dr Lee's specialty is parotid gland preservation and he is apparently pretty good at accomplishing this. We shall see...it is great you have such recovery of your salivary function, almost no one else I have spoken to with my stage disease is as well off.

Barry Cooper

A number of us here have had IMRT and have decent salivary function return - and we didn't have amofostine either. Some tried it and couldn't tolerate it. In some persons the reaction was worse than chemo. Put it out there, you'll see.

I knew there was another PBT site- thanks for reminding me. That price is actually cheap however, my total bills for IMRT at UCSF was $300,000.00 (which my HMO paid 100%). Actually, most of the devices that end up treating oral cancer started with prostate cancer research, including IMRT. The accuracy and tissue preservation issues are very similar. It's one end or the other, lol.

I think that we are all on the same page with QOL issues - that is precisiely why I chose IMRT (not to mention that my tumor was well differentiated and I was a perfect candidate). My doctors were also quite concerned about salivary function/preservation and have been conducting NCI/NCCN clinical trials in that area for years.

I have been in regulatory affairs for radiological devices for over 25 years so my perspective is a little different than the average person or doctor. I'm the guy who has to reign in the marketing BS so these things can get cleared to market by the FDA.

There aren't 2 sides to this - I am merely pointing out that their 510(k) submission states that they are "substantially equivalent" to the predicate device. It's just another mousetrap and they all catch mice.

I am not challenging anyones decision for treatment and the Tomotherapy device sounds fine to me. All RO's specializing in IMRT had better be doing as much gland preservation as possible or they are missing the point - it was developed for precisely that reason. My point is to not discourage people who have had "regular" IMRT.

There is always going to be improvements in the technology.

The most important thing is that you have a high degree of confidence in your medical team.

ps, we don't like to mention specific doctors names on the site.

Barry, I opted for IMRT 3 years ago and can spit with the best of them. A dentist in whose chair I have been spending a lot time, one who specializes in post-rad patients, told me he could not tell that I had rad, given the quantity of my saliva. For the record, I was classified as stage IV, with a tumor and some involved nodes, had surgery, and also chemo. No Amifostine. And I can spit! Good luck.

Has anyone tried and benefited from accupunture/ massage to help with salivary function? other functions?
post rad?
Mark

My husband has very little saliva function. He is in his 3rd week of accupunture, and so far nothing. The Doc told him one of the people from my husbands head and neck support group is having success with the accupunture and his saliva. This other patient has been going for about 2 months. My husband will see him next Thursday at the support group and he said he is going to talk to this guy and find out how much success he is really having or if Dr. just wants my husband to keep coming. I will keep you posted.
Cheryl

Gary...what makes you think I haven't been to Loma Linda yet???

:-)

Been there, done that...waiting on "treatment plan" to see if my case qualifies.

The perinural involvement I think may disqualify, but who knows...

My husband had the IMRT (with no chemo). He started acupuncture through the cancer hospital two weeks before radiation began (in April) and thinks it helps so much (in many ways - pain, nausea, anxiety, xerostomia) is still going. He does have some dry mouth but I haven't really heard him complain that much about it. I remember when he started we took in a study on xerostomia and acupuncture from the Naval Medical Center in San Diego which showed the particular acupuncture points they used. I think the trick is finding a highly qualified one that works at a cancer center or has worked with cancer patients.