I have a question on radiation pertaining to my husband
Today he went in for the five days a week rads the two young nurses that help with the radiation patients marked and repositioned the mask with out the RO in the room): I wasn't told this of course until we got home it's been on my mind all day and it just makes me more concerned.. Are they treating my husband with the best care is he getting the right kind of attention trough this it's very stressful enough... When we first started in March meeting with the ENT he todo us they're souks be several specialist their (aka) a team !! Working together while he us going trough this somehow I fill we're in the dark but what do we say ? That's the only decent hospital within hours from us

Today wasn't all that has had me bothered it's the manners from the ENT he's a very cocky dr he may be a good surgeon but he don't have the attitude or personality to comply with it .. I fill today that the radiation O should have been their and not two young people that acts so inexperienced not that young people are stupid it's just the bed side manners you receive or the actions a person makes or does that speaks volume

I'm going to try and talk to them tomorrow that the last rad for this week I need answers and really at a busy office it's hard to get them when needed

Sorry forgot to mention that he is going into the first part of week two
He still eating good and swallowing just eats slower than before and seems a little more tense than before :: I find my self saying shhh! To the kids more when their really not at all bothering me but I fill they may be a little loud around their dad their such good kids they are what keeps us going and trying harder they can say the funniest things !!

The team who work those machines work very closely together and its not unusual for minor adjustments be made. Once the patient is in place an xray is done before every treatment to make sure they are in exactly the same position every time. I know its a very foreign and unnerving experience but there is a lot involved in the planning process that we don't see. The protocols for running those machines is quite involved and it not like slapping a burger on the grill, although thats what Larry might feel like sometimes!

ENTs arent renowned for their bedside manner, but even the quirky ones I've come across know what they are doing. I Googled mine, found out he was actually a professor, very highly regarded academically and by his peers as a top surgeon. But within 5 minutes of meeting him I wanted to punch him in the mouth!

Its a lot to take in, and you have a way to go yet. My treatment finished a couple of weeks ago, and I've seen a number of patients recently in the same boat, some went better than others. You'll see and hear this advice all over this forum, and the medics have probably given you this as well.

1. Eat and drink as much as you can, while you can.
2. Bicarb mouthwashes 4-6 times a day.
3. Sorbolene on the neck 4-6 times a day (not less than 1 hour before treatment) and use sorbolene as soap, at least around the neck.
4. Get a notebook and start writing down when you take what meds, temperature. Its very helpful for preventing missed doses (memory can get a little foggy) and its good if Larry has to be admitted to emergency for something.
5. Do the swallowing exercises. Tongue presses, jaw stretches, effortful swallows. These help later on.
6. Write down changes that happen and talk to the medics about them. Oral thrush, tinnitus and constipation are things you want to get on top of early.

There are others, but if I was sending a letter to myself 6 weeks ago, thats what I'd write so I hope you find that useful with Larry. I'd also say to remember my wife is amazing and I couldn't have done it without her. Best of luck to you both.

Radiation adjustments are common. Mine were adjusted weekly throughout Tx and I hated those days because I was "in mask" for at least 15 minutes longer. These techs work closly with the RO and are trained to do exactly what they do.

Yes the eating, soon to be drinking, is a huge part of this ordeal but he needs to get at least 2500 to 3000 cals EACH and EVERY DAY from now till at least the end of his 1st year post Tx. Soon he may/will migrate to liquids only. Swallowing effeciently will become paramount which means swallowing less but getting the most calories so check out and even order now Boost VHC which delivers a whopping 560 calories in a small 8 oz can. Don't need a prescription but it's not found on regular stores shelves. Check out Amazon via OFC's link or stores like Walgreens, CVS where you must go thru their Pharmacy dept.

Amen davidcpa! My dinner of choice was 3 cans of Carnation VHC with a Benecalorie chaser. I got behind the 8-ball early by not getting enough caloric content and that momentum was hard to stop and reverse. I did well in treatment but could have done much better had I been smart about calories from day 1.

If this was a daily treatment session, the RO rarely, if ever, attends regular sessions. The RO technicians are fully qualified to do their duties. It seems unimaginable any accredited facility to allow non-certified persons in the treatment room. Not to say it is impossible but absolutely not a typical event.

I had Tomo Therapy (IMRT), and the first part of the treatment was always a scan to check and calibrate measurements and the machine. It's totally normal to make adjustments throughout treatment without the RO there. It's what these folks do all day every day

Positive thoughts and prayers.

Like everyone here, all my RO's, I had a few lol, never went into the radiation room, maybe once to check my mask. It's all done by the Radiation Therapists. On the other hand, during IORT, Inraoperative Radiation Therapy, the RO is present during surgery with the surgical team, along with the physicist, to do system checks, protect structures, place radiation pads, calculate dosage and RO is the one who presses the red button remotely from a leaded room in the OR to deliver radiation, along with the rest of the surgical team.

When I was consulting with my first radiation treatment, the RO was called on the phone, and had to check the set-up via her monitor. When she finished, she said tha was for prostrate cancer, and waved her hand, saying that's nothing compare to what you're going to get lol.

[quote] during IORT, Inraoperative Radiation Therapy, the RO is present during surgery with the surgical team, along with the physicist, to do system checks, protect structures, place radiation pads, calculate dosage and RO is the one who presses the red button remotely from a leaded room in the OR to deliver radiation, along with the rest of the surgical team. [/quote]Thanks for the details on IORT. I have seen the acronym but not aware of the details. Certainly, in this sort of adhoc, real-time planning and zapping with no map, you need the wizard and sidekicks there but even they do magic from the "control" room, not the operating theatre.

You finished you're treatment on my bday thanks for all the advise and the part on the end that was very sweet hope all us well with you I wanted to ask what does the 70gy) mean in you're signature area sorry I'm still new to the abbreviations I try but sometimes it's best to just type out the whole word lol ..

Hi ang
70 Gy is amount of radiation given, this is called (grays) normally max is around 70 gy's some have had more like Paul, hope Larry is feeling better.
Ken

Don,

It's more involved, complicated than just that, and it's done only in a few select places, and each part of the trained team is integral for successfull outcome to do the 4 part process, 1. Radical resection, 2. reconstruction like a flap, 3. IORT, and 4. boost dose radiation by IMRT, Protons, and possibly chemo to follow. IORT is EBRT, external beam radiation, basically a newer form of brachtherapy, and like IMRT there are different types, and different radiation machines. There is IOERT, Intrabeam-IORT, Low -Dose IORT, and High Dose Rate-IORT that I know of. I did HD-IORT, where I receved one large dose of Radiation in one fraction, 10-20Gy, taking anywhere from 10-60 minutes using Photons, and is done with the maximum resection, reconstruction by the ENT. The RO has to select the dosage, which is already pre-planned, but final adjustments are made, and recalculated. The proper sized silcone radiation applicators is selected by the RO, placed, molded directly on the tumor bed, during neck exposure, sutured in place, packed, and organs clamped out of the radiation field, and or protected by molded lead. Each part of the team is responsible for certain aspects, for example, the physicist, has to do safety checks 24hrs before surgery so the after loader can deliver photon radiation to the HDR, and continioulu checks it during surgery. The RO, who is on the facility license, is responsible for the applicators, wire, monitoring the tumor bed, tumor dose, etc, along with the ENT, and the ENT is overall in charge of the surgery. The whole team leaves the OR to the sterile control room where the same life monitoring equipment is inside the lead shielded room for the anesthesiologist, ENT, Radiation Oncologist, Physacist, and use CCTV. The treatment plan is recalculated, and after verification with the Physacist, and RO, the RO delivers the radiation, and monitors the surgical bed, applicators with the ENT. After the radiation deliver, it is retracted, and Geiger counter used by the physicalist to enter the room, where the radiation applicators are removed from the tumor bef by the RO, physicist removes the portable HDR, cleans, secures it, and ENT completes the surgery. Then, about 6 weeks later, or confining the treatment package to under 100 days, a boost dose of EXBRT is done. I had IMRT for 5 weeks at 45Gy with Taxotere and Erbitux, and this year haf my carotid artery, and vegus nerve, tumor removed, and then did 5 weeks Proton Therapy at 50Gy with Carboplatin.

The RO Fellow said I was probably one of the few in the country to have had HD-IORT and Proton Therapy as part of the treatment package.

Paul,

When you sit for your licensing exams? You would probably pass with flying colors...lol

Lol. Only things I like I do well with. Thanks.

yep. what can you say, insane does not even begin to describe the complexity of procedures that are done in extreme cases. I do point that out not in a demeaning way, just to comfort the 99% that your journey is very rare and there must be some other study to see what sort of mutated DNA you have to endure so much treatment. You got fight like nobody else here, that's for sure! Don

We're going into week six staring Monday.
I'm not sure my husband is going to make it to week seven he's burned very bad the raw neck is showing all around I'm really worried he will get staph or it will become very infected he's trying to stay home and not get out around so many germs .. He's using Aquaphor ,cool aloe for the burning and Neosporin the one we have has plus pain Relif .. His mouth is so sore he can't drink water with out the pain so yesterday I started putting formula trough the peg along with water . I'm not sure how long each feeding should take I've been doing them slow around 30 mins each can or in our case bottle I've stocked up on Ensure plus it has good protein with 350 cal: each bottle the two cal has more but is much thicker and harder to get trough the peg it gives some resistance as I'm putting it trough witch takes a little longer than the thinner Ensure
My husband took his last chemo Thursday he has a shaking in his hands and arms and is very nervous ... He didn't have this before !! Treatment !
This time on a better note the chemo didn't make him sick I think it's because we stayed on top of the Anti nausea meds: I'm wondering how long after treatment will it be before he can start to eat again ? Also how long will it before the neck starts to show healing .. We talk to the dr tomorrow I still keep racking my brain on if they should have done surgery to remove the tumor!




Will they still have to do surgery after rads: or so the expect the rads and one and half dose of chemo to get rid of this completely ??

It's a lot to think about I don't bring it up to my husband I don't want to Add to the stress being he is so close to being finished with treatments !

I keep asking is the formula alone enough to keep the weight on or help gain back some of what he lost? He was weighed on Thursday and was at 223 he started at 257 I pray he don't loose no more as I'm staying on top of the peg feedings every two hours or until he gets 2500 to 3000 cal:

Everyone recovers at their own pace. Food will taste terrible for weeks after rads ends. Try not to get too far ahead of yourself with worrying about recovery. Focus on today and getting enough calories and water in. That must be the priority, everything else comes second.

The formula is nutritionally balanced enough to sustain the patient for however long they need it. Losing 34 pounds is alot! That means he is burning up way more calories than he is taking in. This is not a good sign, his intake must increase right away. Push for a little more like 3200-3500 calories. No, it is NOT too much even though it sounds like alot. Dont lose sight of water intake and hit at least 48 oz, hopefully more like 64 oz daily. For a bigger sized person he should take in extra fluids. Dont forget about the chemo lab being a resource to get extra hydration. You will need a prescription from his doc. The extra hydration will make him feel a little better. I always felt like a new person walking out after being hydrated.

How about making some milkshakes to help to soothe his sore throat? I used to make a chocolate peanut butter shake that had tons of calories.

(All measurements are estimates)

Giant High Calorie Choc-Peanut Butter Milkshake

3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder (check with doc if this is ok)

Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to what works best for you.

Easy to Eat Food List

Keep encouraging him to drink every single day, even if it hurts. He will have far bigger problems if his swallowing muscles arent used every day. They very quickly forget how to function normally. Trying to relearn how to swallow after not using those muscles for days or even weeks is not easy to do. I was one who didnt have the luxury of a caregiver to help me and I spent way too much time sleeping in bed instead of paying attention to intake and swallowing. This caused me to never again eat a proper meal after going thru rads. I know it hurts, push him to swallow a few sips of water at least 3 or 4 times a day. Only a few sips will keep those muscles working properly and help him to avoid problems later.

I know this is not easy. Ive been there and tried to quit. My son and nurses refuse to entertain that plan. Now is when being a caregiver is only beginning to be the hardest. I hate to say this but the next few weeks things will get even harder. Even when rads is over it continues to work making the patient feel lousy. Hang in there and dont forget to take a few minutes for you once in a while.

Best wishes!!!!

PS... Keep patting on the cream onto his neck. Never put on prior to getting rads, but afterwards on the way home he can pat some on. Repeat several times per day. Even if his neck looks terrible with oozing and open sores it will heal after rads is finished. Usually there are no scars left no matter how terrible the skin looks.

Christine is correct on the milkshake. I can testify that one a day put me on my way to recovery and is still a critical part of my diet to this day. Whatever happened with my metabolism no one has explained but my 4000 + calories per day to get back to pre C weight in 9 months was not possible without Christine's recipe.

Keep the feeding routine going as he needs that nutrition. Water and the milkshake are necessary by mouth to keep the muscles working. The speech therapist should have given exercises and those are mists also.

Thanks guys what abought the formula feeding trough the peg how much time should I take to do each feeding ? I've been doing it around 20 to30 minutes each time I do it slow so he don't get sick he is still taking the anti nausea meds should I be doing this faster or is slower better will he start to gain some if his weight back ?

His he swallowing normally some during the day?

Weight gain wont happen for a long time. For example, during my recovery I took in anywhere from 4000-7000 calories daily for several weeks and never gained an ounce. Of course everyone is different. Its very rare that we ever see a patient gain much weight before about one year post rads. The patients body goes thru so much during treatment that it takes an incredible amount of calories to rebuild itself.

Whatever speed your husband tolerates is the right speed. I used a feeding pump that I controlled the speed and had it run overnight while I slept. Just make sure to flush the feeding tube good after every feeding.

I had over 4,000 cal/day for a year with no weight gain. I just did that again the past 16 months with a 10 lb gain.

Yes he's lost more weight than I thought I just hope if we keep the feedings up and the right amount of calories that he won't loose no more that's what I'm hoping
Today is a bad day the worst out of all the weeks we have been going trough this he fills week he's really having it hard he don't fill good at all I pray we can get trough this next week I'm not sure he can stand the last week I'm going to ask for hydration like Christina mentioned hoping this will make him fill better
And yes David he is still able to swallow he takes some formula and jello by mouth I give what he can't trough the peg he's always got water in hand he uses the water to wash down the jello or pudding I'm not sure why he's doing this I'm guessing the neck is raw from rads .

Sorry my writing seems rushed I think we're always at rads or I'm home rushing to get done we have two boys one is a teenager and my husband takes care and over sees his first handicap cousin that has now turned to me so I have a lot going on right now just so glad this site is here to help along the way ..

We're in rads Dr. Office as if now next the two hour drive back home I'm blessed to have legs and health to keep up with it all

A Caregiver's job is not to be wished upon anyone. You are our angels and without you we could not focus on our job of fighting this beast with all our might.

That's very true David I didn't know going into this how hard it was going to be on me as a caregiver it's almost round the clock care and more so with the peg ...
I give my all with two kids to care for too sometimes it can be trying but it's all with it ... I have a big heart when it comes to people in general if I see someone sick I want to offer Advise and mostly a helping hand ... But when it comes to a family member or someone close it's sad Hurtful and lots of emotions along with worry and sleepless nights