Radiation Consultations?

donfoo

ABout ready to start radiation. Mask is made and they ran the sim verification yesterday so cleared to start radiation on Monday. I told them I am delaying a week to get more recovered from the remaining chemo mouth sores. My MO felt I was good to go on Monday but was fine with my request to delay so I called the rad techs to inform them not to expect me on Monday.

After a lot of soul searching it finally dawned on me that I have very little specific detail about what is likely the most significant and crititcal battle in my war on cancer -- KILLing the beast with radiation. After searching here on physicist and dosimetrist and getting a total of 11 hits, this is clearly not discussed much at all.

I'm looking for insight as to how many of you either wanted or had a consulation where the RO staff described and showed the actual IMRT radiation 3D treatment plan. I saw only one or two references where this sort of detail information was given to the patient but for me to feel comfortable going forward I really need to have this all explained so I not only fully understand the defined plan but also the factors and considerations that went into the development of my specific plan.

How many of you know the thought behind your rad plan? How much and what consideration was given to sparing the parotid gland(s) for example. Where is the dosage is greatest, what is affected, where it is less, are all 70 grays really needed or are they just spread around since the standard of care states 70 gY. It sure seems to me like there should be more latitude in varying from 70 and doing less if that makes sense.

Thanks

Don

 

 

 

phrannie51

What I got from the RO

was a map of the radiation overlayed on the PET scan....all color coded showing where it would be focused (in red), and the "layers" of area that may be affected from the rads in yellow...then further out in green.  I never asked how many gY's I was getting....only being concerned with how many treatments.  There may come a day when I'll wish I'd been more inquisitive, but at the time all I wanted to do was get the C out of me.

p

fishmanpa

Same as "P"

Hi Foo,

Before I started, I didn't inquire. All I knew was I wanted to get going woth treatment and get this beast out of me. After several treatments, listening to the machine (26 counter clockwise rotations around my head) and browsing through my chart that contained written printouts with numbers and letters and such, I asked my RO and showed me several 3D images of my head and the rads that were hitting where (color coded) along with the # of grays hitting me. It varied from 68 on the left side where the tumors were to 26 where my Parotids were.  He explained in detail why they were doing it that way based on my unknown primary. I didn't go much past that in a technical sense but based on seeing PET scans, CAT scans and then the final 3D layout, it made sense. 

My team is focused on my quality of life and my passion for music and one of their goals is to see to it I sing again  I would just come out and ask. I don't see any reason they wouldn't show you.

"T"

PS... new rad side effect for me... don't have to shave my neck! ~

phrannie51

fishmanpa said:

Same as "P"

Hi Foo,

Before I started, I didn't inquire. All I knew was I wanted to get going woth treatment and get this beast out of me. After several treatments, listening to the machine (26 counter clockwise rotations around my head) and browsing through my chart that contained written printouts with numbers and letters and such, I asked my RO and showed me several 3D images of my head and the rads that were hitting where (color coded) along with the # of grays hitting me. It varied from 68 on the left side where the tumors were to 26 where my Parotids were.  He explained in detail why they were doing it that way based on my unknown primary. I didn't go much past that in a technical sense but based on seeing PET scans, CAT scans and then the final 3D layout, it made sense. 

My team is focused on my quality of life and my passion for music and one of their goals is to see to it I sing again  I would just come out and ask. I don't see any reason they wouldn't show you.

"T"

PS... new rad side effect for me... don't have to shave my neck! ~

You won't have to shave

inch or two along your hairline on your neck either.......I lost hair all over my body by the time rads and chemo were done.....none in my armpits, none on my legs, no peach fuzz on my face...no nose hairs.....no eyelashes (Greg was calling me turtle eye) some of this was highly convenient, I think....most came back, but it took months and months.

p

CivilMatt

last check on rads

Don,

I was told of the side effects I could expect.  In particular she looked me right in the eyes and told me about losing my ability to taste, I knew she was serious, but how bad could it be.

 

Following standard protocol (for dosage) she hit the primary (BOT) with the highest rads (70) and surrounding areas with 60 & 50.  The locations were guided by the PET, the physical exam, the surgery report and her experience with cancer presented  like mine.

 

I was given all combinations of options by my team, surgery, no surgery, chemo, Erbitux , no chemo, rads , no rads.(more combinations furnished by written request).  To make a long difficult story short, I chose the surgery, followed by Erbitux and rads. 

 

I saw the problem and made a choice to solve it.  Everyone at the H&N forum had similar but different treatments.  Your plan will be similar but different.  Your treatment will most likely produce unwanted side effects, but the results will make you cancer free and ready for years of living.

 

Best of luck,

 

Matt

Duggie88

Don

I wasn't much into looking into what they were going to do over just getting it done and moving forward. As many have said before, you have to trust the professionals. Thats not to say you shouldn't just be a yes man because you're certsinly entitled to know what they have planned for you. In my case the least I knew the better off I would be. I didn't even know I had stage 4 until after I was done with all the treatments and in physical therapy. All I was worried about and pissed at was cancer invaded my privacy and I was going to kick some **** and if that meant going through hell to get there I was willing to do so. All I knew going into radiation was I had to do it for 5 weeks and that is what I focused on. They wanted me to start on on February 16th and I was there. After the first treatment I learned the machine stopped at 7 positions and zapped me twice in 6 of them and once at the 7th and each session I went through meant one less to get to 30. And now after 3 years I celebrate that 30th one every day.

To sum up. If you need to know, by all means ask especially if this adds to your comfort zone needed to push forward. Just make sure you don't what if it to death inside your head.

I turned off the voices I hear inside my head during the treatments. I allowed their input afterwards and three years out they find unique ways to celebrate every day. During my first haircut after my radiation there was a new female barber and when it came time for the shaving part I pointed out my big scare and told her I was jittery with females around my neck with razors. I told her my wife caught me cheating on her and slit my throat from ear to ear and she screamed and backed away. The barber next to her knew me from cutting my hair previously and lost it laughing so hard. That was the mean voice and on accasion I have to corral that one.

Enjoy the day

      Jeff

hrowe

phrannie51 said:

What I got from the RO

was a map of the radiation overlayed on the PET scan....all color coded showing where it would be focused (in red), and the "layers" of area that may be affected from the rads in yellow...then further out in green.  I never asked how many gY's I was getting....only being concerned with how many treatments.  There may come a day when I'll wish I'd been more inquisitive, but at the time all I wanted to do was get the C out of me.

p

I trusted my RO and MO

I trusted my RO and MO implicitly so didn't question the treatment plan, which was thoroughly explained before it started. Besides, when your RO is named Dr Einstein why question it?  Seriously though, 35  IMRT (Synergy LINAC) and 6 weeks of one bag of 50 mg/ML Cisplatin/wk. Finished 06/1/12. I was given 6 rads per week instead of 5. He wanted to "buffer" in case I missed an appt or the LINAC broke (It did once. The interlocks quit working). NED last PET scan in March.

The CT and Pet scans are overlaid and a computer model was created doing some SERIOUS number crunching. Takes days to run the simulation. They then put me in the LINAC and ran a simulation 2x. Second time was a tweak of the first. When treatment was finished I was told exactly how many Grays were applied to each area of the head and neck. 70 grays total. As an example, my left ear (same side as tumor near my epiglottis) received 5 Grays total. Right ear 2 Grays. There was a 1" thick binder when I finished showing everything.

hrowe

fishmanpa said:

Same as "P"

Hi Foo,

Before I started, I didn't inquire. All I knew was I wanted to get going woth treatment and get this beast out of me. After several treatments, listening to the machine (26 counter clockwise rotations around my head) and browsing through my chart that contained written printouts with numbers and letters and such, I asked my RO and showed me several 3D images of my head and the rads that were hitting where (color coded) along with the # of grays hitting me. It varied from 68 on the left side where the tumors were to 26 where my Parotids were.  He explained in detail why they were doing it that way based on my unknown primary. I didn't go much past that in a technical sense but based on seeing PET scans, CAT scans and then the final 3D layout, it made sense. 

My team is focused on my quality of life and my passion for music and one of their goals is to see to it I sing again  I would just come out and ask. I don't see any reason they wouldn't show you.

"T"

PS... new rad side effect for me... don't have to shave my neck! ~

No neck hair is a benny
I

No neck hair is a benny

I get some minor peach fuzz in spots which I hit with an electric razor once a week.

donfoo

Thanks gang.

Thanks for confirming my impressions about wanting/needing more than cursory info about the radidation process. As is similar to everything cancer, there is a wide range in every response. Like Jeff did not want to know anything, just get it done. Then me on the other end who is very analytical and strategic and wants to see all the details and others like P and T sort of catching details more my chance.

It seems obvious they are going to nail the primary and lymph nodes hard but my concern is they minimize dosing the salivary glands, jaw bone, and other areas that are not cancerous and minimize major short and long term side effects and QOL issues.

Remember all these treatments are a balancing act between getting a 100% response and mininizing side effects and impacting all other QOL functions. And we know HPV16+ has far better response and outcomes so it makes sense more phase III trials start reporting altered therapies (less grays, less chemo, etc.) are as effective as today's NCCN standard of care. It may sound a bit like taking unnessary risks to deviate from standard of care but I am open to the possiblity and at least have the discussion with the RO. 

One example is going under 20 on the parotid; I have read that elsewhere so lower there makes for less dry mouth. Things like this are worth discussing to me. In "T"'s case they may have altered the plan to improve the chance of preserving voice.

I'll call my RO Monday and ask for a consult this week before starting the following Monday.

Skiffin16

Never Asked..

But I'm sure I could have gotten the specifics, because they were very forthcoming with information...

I do know that I got 70Gy, on the right (cancer side), and 60Gy on the left side.

I have regained probably 90 - 95% of saliva, and close to if not 100% on the taste.

JG

peggylulu

Skiffin16 said:

Never Asked..

But I'm sure I could have gotten the specifics, because they were very forthcoming with information...

I do know that I got 70Gy, on the right (cancer side), and 60Gy on the left side.

I have regained probably 90 - 95% of saliva, and close to if not 100% on the taste.

JG

Thanks JG

Thats is so good to know ! At 5 months out of Rads , I worry sometimes that my taste and saliva will never come back ! That is very depressing to me ! I love the taste of food and eating WAS my favorite thing to do since I don't have any hobbies ! Might have been the reason I WAS so overweight ! Lol

Thanks , Peggy

donfoo

Consult scheduled for tomorrow with RO

I spoke to my RO who is more than happy to meet and share the plan and discuss other concerns I have. Today was the original target date to start CRT but something in my gut just made me take a time out. After much research this weekend I discovered there is a black hole in my knowledge of all things RO. Also learned that the machine assigned to me is the newest and greatest available so that will be exciting to get on and off that plank in minutes. It takes 72 seconds for each pass and two does the trick, so less than two minutes to do the daily radiation. Plus the advanced planning tools allow for full 3D conformal models and much reduced non-tumor rads. Reading up on that alone gave me much increased comfort that side effects are going to be on the lesser side of the scale.

I'm really looking forward to seeing my plan and discussing the decision factors going into creating my plan. Seems like the RO can address all these things and maybe no real need to meet and chat with the medical physicist and dosimetrist.

FYI - if you are curious, google varian trilogy and eclipse and you can see the various images taken using standard IMRT and the new RapidArc technology. Impressive to say the least as far as the reduced radiation fields and minimizing rads outside the specific tumor regions.

Billie67

donfoo said:

Consult scheduled for tomorrow with RO

I spoke to my RO who is more than happy to meet and share the plan and discuss other concerns I have. Today was the original target date to start CRT but something in my gut just made me take a time out. After much research this weekend I discovered there is a black hole in my knowledge of all things RO. Also learned that the machine assigned to me is the newest and greatest available so that will be exciting to get on and off that plank in minutes. It takes 72 seconds for each pass and two does the trick, so less than two minutes to do the daily radiation. Plus the advanced planning tools allow for full 3D conformal models and much reduced non-tumor rads. Reading up on that alone gave me much increased comfort that side effects are going to be on the lesser side of the scale.

I'm really looking forward to seeing my plan and discussing the decision factors going into creating my plan. Seems like the RO can address all these things and maybe no real need to meet and chat with the medical physicist and dosimetrist.

FYI - if you are curious, google varian trilogy and eclipse and you can see the various images taken using standard IMRT and the new RapidArc technology. Impressive to say the least as far as the reduced radiation fields and minimizing rads outside the specific tumor regions.

Don
My consult with my RO was almost identical to Phrannies. He asked me if I had any other questions and I just said no and that I just wanted the C gone!

The new machine sounds awesome! My husband laughs at me because when someone would ask me how long rads treatment daily lasted I would answer "4 songs on the cd player" and honestly, it was 4 songs!
Sounds like you will have it much faster than most of us :-)

Good luck at your consult.

Billie

hlrowe

New LINAC sounds great!I had

New LINAC sounds great!

I had to spend ~ 17 min on each treatment and my neck got pretty darn stiff bolted into the table. Like Billie, about 4 - 5 songs off the CD

fishmanpa

donfoo said:

Consult scheduled for tomorrow with RO

I spoke to my RO who is more than happy to meet and share the plan and discuss other concerns I have. Today was the original target date to start CRT but something in my gut just made me take a time out. After much research this weekend I discovered there is a black hole in my knowledge of all things RO. Also learned that the machine assigned to me is the newest and greatest available so that will be exciting to get on and off that plank in minutes. It takes 72 seconds for each pass and two does the trick, so less than two minutes to do the daily radiation. Plus the advanced planning tools allow for full 3D conformal models and much reduced non-tumor rads. Reading up on that alone gave me much increased comfort that side effects are going to be on the lesser side of the scale.

I'm really looking forward to seeing my plan and discussing the decision factors going into creating my plan. Seems like the RO can address all these things and maybe no real need to meet and chat with the medical physicist and dosimetrist.

FYI - if you are curious, google varian trilogy and eclipse and you can see the various images taken using standard IMRT and the new RapidArc technology. Impressive to say the least as far as the reduced radiation fields and minimizing rads outside the specific tumor regions.

Alien Technology? ~

Foo!

That's cool man! Well as cool as something can be when dealing with cancer... 

The latest greatest eh? My actual rad session from the time they say "here we go" till done is 101 seconds. I have a scan prior and then re-set for the treatment. All said and done it takes about 12 minutes. 

I Googled varian trilogy and eclipse and there's 3D image of a skull on a computer screen and you can see the parts on the inside in color, cool blue to hot red. That was similar to what my RO showed me in addition to 2D images. The rads and specific locations were clearly marked. When I found out I was getting operated on by a robot that looked like something out of a Close Encounters Movie, I was pretty into it. 

I'm sure you'll feel a lot better once you get that 1st rad out of your system.

"T" 

donfoo

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.

fishmanpa

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.

Carboplatin?

Hey Foo,

Why the Carboplatin as opposed to Cisplatin and what dosage is he considering low dosage? I'm on 6 weekly doses of Cisplatin at 80mg. That's considered "moderate".

"T"

 

donfoo

fishmanpa said:

Carboplatin?

Hey Foo,

Why the Carboplatin as opposed to Cisplatin and what dosage is he considering low dosage? I'm on 6 weekly doses of Cisplatin at 80mg. That's considered "moderate".

"T"

 

Carbo rather than Cisplatin

From what I gather the logic is the induction chemo 3 rounds of TPF, the baddest **** combo around, did its work to shrink the primary and lymph nodes as cofirmed by my the last CT impression that stated "interval resolution or near complete resolution of previously described mass in ...," and kill any small microscopic loose cancers. His approach is to do this first as it not only halts but reduces the cancer ahead of radiation.

The reason for chemo during radiation in my case is solely as a radiosenitizer for the radiation to be most effective and not for any cancer killing purposes. Having the full dose of Cisplatin (at 100/m2) already subjects me to more potential side effects of cisplatin if that were to be given during 7 weeks of rads. Carbo is platinum based like cisplatin so is as effective as a radiosynthesizer with rads while being less punishing than cisplatin in terms of side effects.

I do not have the specific dosage of the carbo. I will find out Monday, most of my conversation with Dr R last Friday focused on the fact the dosage was lower and thus the side effects would be quite a bit less. He went as far as stating I should not have any chemo related side effects during the radiation therapy and that is quite a statement from physicians who are usually so conservative and measured in the statements they make.

don

fishmanpa

donfoo said:

Carbo rather than Cisplatin

From what I gather the logic is the induction chemo 3 rounds of TPF, the baddest **** combo around, did its work to shrink the primary and lymph nodes as cofirmed by my the last CT impression that stated "interval resolution or near complete resolution of previously described mass in ...," and kill any small microscopic loose cancers. His approach is to do this first as it not only halts but reduces the cancer ahead of radiation.

The reason for chemo during radiation in my case is solely as a radiosenitizer for the radiation to be most effective and not for any cancer killing purposes. Having the full dose of Cisplatin (at 100/m2) already subjects me to more potential side effects of cisplatin if that were to be given during 7 weeks of rads. Carbo is platinum based like cisplatin so is as effective as a radiosynthesizer with rads while being less punishing than cisplatin in terms of side effects.

I do not have the specific dosage of the carbo. I will find out Monday, most of my conversation with Dr R last Friday focused on the fact the dosage was lower and thus the side effects would be quite a bit less. He went as far as stating I should not have any chemo related side effects during the radiation therapy and that is quite a statement from physicians who are usually so conservative and measured in the statements they make.

don

Gotcha!

Ok... that makes sense totally. So basically they carpet bombed your cancer with the chemo cocktail and now they're going in with Special Ops

"T"

akbear49

Like Many

Like many already stated I never even bothered to ask much other than reassurances that it would work.   I'm 21 months out since my last treatment and am doing very well.   My docs told me I would never have to shave again and I thought that wasn't a bad thing - too bad they were wrong about that.   My weight is almost back to what it was, I only lost 17 pounds during the treatment.    My wife was a food nazi - she made me drink Ensure and fortified smoothies - drank so much Ensure that I can't even look at that stuff anymore.   BUT I only lost 17 pounds, never got a feeding tube - drinking Ensure worked.   

I had 35 radiation treatments and 3 rounds of Cisplatin, I wasn't able to eat solid food for a few months - but my docs are very happy with my progress.   Hang in there 

Skiffin16

Treatment Plan..

Don, your treatment plan sounds a lot like mine did four years ago, other than the newer rads machine...

Nine weeks of the three cycles TPF (Cisplatin, Taxotere and 5FU), then seven weeks of concurrent weekly Carboplatin, and the 35 daily rads on IMRT for me... Right tonsil was primary and  lymphnode same side secondary, both tonsils were removed before treatment started... Tumor was left pending response to TPF and concurrent.

Rads targeted both sides, even though everything I had was on the right, the affected tonsil and a small tumor on the right...7000Rads on the right, 6000Rads to the left..

The tumor actually dissolved away around week 8 or so of the TPF, confirmed by CT before starting the concurrent.

Also, no PEG....

Like you, other than having cancer, I was in perfect health, LOL...

I'm sure you're going to do just fine and in a few months, this will all be behind you and you on your way to recovery...

JG