Radiation Consultations?

donfoo said:

I am your clone

Hey John,

The more time I am on this board and the further I travel on my journey it became clearer everyday that my journey in many ways was following the path you blazed. My primary is BOT and there was no surgery so the induction TPF and rads are the main killing tools. In your case, they removed the primary surgically, if my understanding is correct that the right tonsil was determined to be the primary. What tumor did they leave, are you referring the the regional metastisized lymph nodes?

The radiation treatment plan does differ a bit as dosing will be at 7000, 6000, and 5600. So I'll get even less dosage on the non involved tissue and glands than you did.

Since we both are doing carboplatin, clearly documented as having less side effects than cisplatin, and given extra assurance by my MO, I hope side effects from the chemo side of the concurrent chemoradiotherapy (CRT) will bias to the minimum side of the scale.

PEG - this is one area where I have a harder time comparing as your radiation treatment plan targeted a different primary area than mine: tonsil vs BOT and I don't have still sufficient insight as to how the accelerator blasts the radiation to the target areas and which areas that are radiated create the swallow issues. Clearly, the back of the throat is blasted away in either case but just what areas of the entire laryngeal are most senstive to radiation and create difficulty in swallowing. I have read very little here or on OCF about this level of areas being radiated and relationship to swallowing and effect on eating orally and necessity to PEG up.

I was so in the PEG camp early on but now along with my surgeon, MO, and RO, am in the no_PEG camp until deemed necessary. And so trilled with this position at this point. I have my plan like YOU to chug some viscous lidocaine and chase it down with some high calorie, high protein shake (two 1200 calories shakes make the min cut) and I have lined up supplemental saline IV as necessary from my neighbor. And pain mgt from the RO/MO as needed.

So I feel I got all three bases covered: nutrition, hydration, and pain management. I feel as most prepared as I can as I start concurrent radiation and chemo next Monday.

Tumor/Lymphnode...

The tumor was a lymphnode same side as the tonsil... Originally I just had a mild throat irritation, starting around October or so of 2008... By the time I went to my GP, tried two courses of AB, and was referred to my ENT, seeing him on January 2, 2009.

I had a small lump pop up on the side of the irritation..., maybe the size of your finger tip. Not real noticeable by sight, but you could easily feel it, though you could see it, but it wasn't bulging out.

They left the tumor because of it's location in relationship to my carotid.. It was close enough they were concerned with damaging the artery or tissue surgically...

So going in, the hopes were either the induction or concurrent would either shrink or dissolve the tumor, making surgery less invasive if needed at the end of treatment, or do nothing and still have to perform the surgery. In my case, the first week of induction, the tumor swelled up, became inflamed and scared the crap out of me... I thought they did something that exploded it and spread it... Never quite figured out what happened, but they gave me Levaquin, which worked in a few days, no pain, swelling or fever...

By the end of the second cycle, the tumor was noticeably gone..., you could barely feel it if you searched around long enough. By the end of the last cycle, it was completely gone... Onco ordered a CT before starting concurrent, no tumor (which had lit up on my initial PET scan post tonsil removal)..., never showed up again.

I can't answer on the swallowing thing...

My presumption is just how I reacted to the chemo, inherent pain threshold, genetics, who knows...

I do believe that attitude (a positive one) plays huge in treatment and recovery.

The pain management, tolerance, etc...has nothing to do with will power (in my opinion), that's all inherent, out of your control.. Attitude and postive thinking is definitely in your control...

I believe you will do well just on your attitude, but with the understanding that your body basically is in charge... If it's hurting bad enough, you do whatever you need to do to get you through...

Best ~ John

donfoo said:

Thanks for the support and uplifting attitude

<< In my case, the first week of induction, the tumor swelled up, became inflamed and scared the crap out of me...>>

That would have freaked me out too. In my instance the lymph node was quite visible and within days of the first induction TPF cycle it had visible been reduced but still visible, after couple days after cycle II infusion, it reduced more but sligthly visible, few days after cycle III, it was no longer visible.

The necrotic tumor at BOT visible when sticking my tongue out and looking was GONE after that first couple days of cycle I infusion. All in all a very good response to the chemo.

Excellent...

Hoping you have results similar as mine and won't have to deal with the tumor...

The part that can mess with some people..., not me as I wanted the same as my MD's..., hit me with all I can stand and kill it once and for all... Is that even though the tonsils were removed, and the tumor disappeared...

I still was recommended to do the seven weeks of concurrent, knowing the rads were going to cause some kind of long term damage...

But, if it killed the cancer, it would be worth it...

So far that plan has worked out pretty much flawlessly...

A few bumps and bruises, but over all I'm healthy, no cancer, and life is good...

John

donfoo said:

Met with RO

My meeting with the RO yesterday went well, except for me adjusting to his "bedisde" manner. He must be knowledgable and highly skilled to be listed among the four RO at the cancer institute but his demeanor is somewhat offputting and a bit aloof. I will just need to adjust to his mannerisms. That said, he did oblige and went through the two page document of questions I had listed including a page of potential and likely side effects.

He did affirm that as the RO he has overall responsibility and accountability for designing and executing my treatment plan and resulting outcomes. He explained and showed me the mapping he did where he used the mapping tool (Eclispe I assume) to delineate the areas to be radiated and to what dosage. Full dosage being 7000, medium 6300, and low 5600. I was surprised even low dosage is 80% of max and he indicated the entire leftside with low dosage, so parotid and salivary are going to get hit on both sides.

He explained how creating a plan particularly with the newest machines is a balance between killing cancer cells while sparing other organs and glands and non involved tissue. But it was clear to me that his philosophy is more conservative and when in doubt blast away to ensure no cancer lives rather than maybe have a few more short and long term side effects.

 

Then again, he may have not had to compromise much in terms of reducing side effects as he stated given my good health going in and the plan he has, I should generally experience fewer and less intense side effects including the need for a PEG which put at 1 in 3, good odds to keeping fighting that thing off. I have my saline IV connection set up at home so I if I feel low on hydration, I am just going to hook up a bag if saline. Got the viscous lidocaine ready to chug then chased down with 1200 calories of protein/carbohydrate liquid drink. Pain he said would be managed as it arose. 

In general, his attitutde toward side effects is deal with them as they arise; different than Dr R (mo) who was more proactive. He also invited me into a trial of MuGard. I said which arm am I on and he said it was random, so 50/50 I could get placebo. I declined then asked about getting MuGard prescribed as needed and he said no, since it had not been proven effective. Geez, I guess he really wants me in that study. 50% vs 0% in getting MuGard, what a way to get choices.

Brian at OCF stated awhile back that it would be difficult to influence or have any input to the plan designed by the radiation oncologist and created by the dosimitrest and validated by the medical physicist against the phantom and finally verified by the radiation therapist. That message came clear clearly when Dr C just looked at me quite convincingly and stated THIS IS THE PLAN I CREATED ..., conveying it was his plan and hand in marking out all the trreatment areas. There was little I could interject at that point other than to posture to have him show and describe the map plan. This is where I did make some comments about tissue and organ sparing vs extra dosing and his general remark back was the goal is to kill the cancer and error on side of caution was the preferred default decision when in doubt.

It was just that I thought I had read some folks got as low as 2000 grays but maybe I was wrong. I do remember some mention about grays around 6000 so 5600 is not that far off. As an aside, he did mention MD Anderson as where they followed some if not all their protocols and treatment therapies so another vote for MD Anderson as he stated they are premiere for HNC, maybe even higher ranked than MSKCC.

All in all, I am on board with the RO treatment plan and starting rads and weekly low dosage carboplatin.

What better trial for Mugard

then to ask those of us who have used it???

I still have 3 bottles full....if you want them, I'll send them.

p

phrannie51 said:

All I can offer up at this junction is....

power eat all your faves , it's gonna be a long time before you get to taste them minimally the same way again. 

As far as swallowing pain during radiation....They zapped behind my nose, but also nodes on both sides of my neck....and I never did get a sore throat, never had any trouble swallowing liquids or wet foods (no way meat will go down tho)....so it's got to be partly just individual physical differences....My mom had laryngeal cancer, had 30 rads....she never got a sore throat either...dry mouth, and lack of taste, but no sore throat AND not a mark (even a red glow) on her neck either....maybe I inherited her throat???

p

 

Speaking of Taste

Interestingly enough, I still have my taste buds. Some things are a little "off", but I can still taste. Last night I took a little bite of scrambled eggs while drinking my shake (with banana) and it was wonderful! My RO seemed a little surprised but very happy. Doesn't happen often apparently. Fortunately no hearing issues yet either. 

And yeah.... eat what you want while you can before it becomes a "job" to eat

"T" 

donfoo said:

I am your clone

Hey John,

The more time I am on this board and the further I travel on my journey it became clearer everyday that my journey in many ways was following the path you blazed. My primary is BOT and there was no surgery so the induction TPF and rads are the main killing tools. In your case, they removed the primary surgically, if my understanding is correct that the right tonsil was determined to be the primary. What tumor did they leave, are you referring the the regional metastisized lymph nodes?

The radiation treatment plan does differ a bit as dosing will be at 7000, 6000, and 5600. So I'll get even less dosage on the non involved tissue and glands than you did.

Since we both are doing carboplatin, clearly documented as having less side effects than cisplatin, and given extra assurance by my MO, I hope side effects from the chemo side of the concurrent chemoradiotherapy (CRT) will bias to the minimum side of the scale.

PEG - this is one area where I have a harder time comparing as your radiation treatment plan targeted a different primary area than mine: tonsil vs BOT and I don't have still sufficient insight as to how the accelerator blasts the radiation to the target areas and which areas that are radiated create the swallow issues. Clearly, the back of the throat is blasted away in either case but just what areas of the entire laryngeal are most senstive to radiation and create difficulty in swallowing. I have read very little here or on OCF about this level of areas being radiated and relationship to swallowing and effect on eating orally and necessity to PEG up.

I was so in the PEG camp early on but now along with my surgeon, MO, and RO, am in the no_PEG camp until deemed necessary. And so trilled with this position at this point. I have my plan like YOU to chug some viscous lidocaine and chase it down with some high calorie, high protein shake (two 1200 calories shakes make the min cut) and I have lined up supplemental saline IV as necessary from my neighbor. And pain mgt from the RO/MO as needed.

So I feel I got all three bases covered: nutrition, hydration, and pain management. I feel as most prepared as I can as I start concurrent radiation and chemo next Monday.

Sound like doctors

You guys sound like doctors. Enough of the BS. Go get your favorite bottle of wine, the thickest steak or fish and enjoy it - then start the treatment. 

donfoo said:

Postscript

Now with radiation treatment underway, the topic of my radiation treatment plan is set and underway. It is the more conservative yet aggressive approach to using radiation therapy to kill as much cancer while finding a balance of minimizing short and long term side effects and QOL.

Looking back I guess the thing that most threw me off is not being brought in and having the plan presented and explained and being offered the options. I think the RO just did the obvious thing with consulting me and I am OK with that now. Still, would have been nicer to have the option to be part of the decision process even if it comes down to "Well, since you have cancer in the left lymph modes, there is reasonable there could be cancer that spread to rights but just were not picked up on PET/CT. So how much do you want to risk (gamble my life and chance of recurrence, my words)  and not ensure we kill anything down the left side?". Obvious course of action so he is right and consistent with my surgeon who advises all along to take the more aggressive course to maximize the kill and minimize recurrence as cure rates go way down on second round.

Experts...

Well basically the way my ENT says to me...., "I'm the expert here"..., LOL and for me, he always has been and still is... I guess if you have faith in your MD's that sometimes is good enough.

He does or has at times told me that others have stopped or went a different route, but he highly wouldn't recommend it.

JG