Eating during radiation treatment

my husband finished treatment June 2020 for BOT with 3 lymph nodes on the Left. Bilateral neck dissection, TORS, 30 Rad treatments to Left side, with two doses Cisplatin. First, just to encourage you.....hang in there!! Was some of the darkest days we had been through in 32 years of marriage.....but 6 months later, we are so grateful. He does have some dry mouth, but can eat and taste most everything! I tell you this, not to brag, but so that folks enduring treatment right now can have hope that they will get through, and enjoy life again on the other side of treatment!!!  He survived by “gagging “ down 3 or 4 very high protein, high calorie smoothies I would Make him daily. The taste and texture was horrible to him....that affected him more than pain as far as swallowing. He just had to choke it down. So basically we just went for the most bang for the buck calorie wise to keep his weight up. He never had a GTube throughout treatments. 

Beagledad..... hang in there! My husband said that recovery from his TORS surgery was 10x more painful than Radiation, but somewhat short lived. Right at the 2 week mark postop, things really improved. But boy, what a two weeks that was! You will do this, and come out at the end!!

Best wishes to all!!

My taste buds were blasted, too, over 11 years ago. Pancakes w/lots of butter and syrup was my first food, being FT-dependent thru tx. Around 4 months after tx I was at the Co. golf tournament, and before starting the back 9 I had a brat with mustard, relish and onions- and it was awesome. That got me started on Roadhouse Chili, which I could taste and enjoyed. Others over the years have also said the same about spicy food solving the taste issue. 

PipLily said:

Hello Mattie....

my husband finished treatment June 2020 for BOT with 3 lymph nodes on the Left. Bilateral neck dissection, TORS, 30 Rad treatments to Left side, with two doses Cisplatin. First, just to encourage you.....hang in there!! Was some of the darkest days we had been through in 32 years of marriage.....but 6 months later, we are so grateful. He does have some dry mouth, but can eat and taste most everything! I tell you this, not to brag, but so that folks enduring treatment right now can have hope that they will get through, and enjoy life again on the other side of treatment!!!  He survived by “gagging “ down 3 or 4 very high protein, high calorie smoothies I would Make him daily. The taste and texture was horrible to him....that affected him more than pain as far as swallowing. He just had to choke it down. So basically we just went for the most bang for the buck calorie wise to keep his weight up. He never had a GTube throughout treatments. 

 

Beagledad..... hang in there! My husband said that recovery from his TORS surgery was 10x more painful than Radiation, but somewhat short lived. Right at the 2 week mark postop, things really improved. But boy, what a two weeks that was! You will do this, and come out at the end!!

Best wishes to all!!

Thank you for including me.  Today is my 2 week mark.  I'll second the notion that TORS is a bad actor.  I'll reserve judgement until after my 33 rad treatments, but it seems to me that I should have avoided TORS and just gone into chemo/rads.  Heck, I have had to endure the worst of the pain anyway, have a huge scar, and now my mouth will not open all the way AND I am still suffering from TORS-related dysphagia and still cannot swallow liquids properly.  Had I gone straing chemo/rads I would be in Week6 and almost on my way to recovring what I had lost during tx.  And after this I STILL have low dose chemo rads to come (60 and 55 gs).  Week 1 post TORS was unbelieveably difficult.  I am, obviously, not pleased with my decision.  
How was your husband's port-TORS chemo/rad experience?
Thank you.

Don (Beagledad)

Mattie65 said:

Hello BeagleDad

I'm sorry to hear that you don't feel comfortable with your treatment.

I had a conservative neck dissection, following which I spent over three weeks in recovery at the hospital. Also, free flap from my arm to my throat and removal of all nodes in the jaw area. They also cut a tongue nerve that was trapped within the tumour, so that half of my tongue is numb. Even though I have many side effects from the operation (lymphodema in my chin, numbness, scars, etc.), I still consider it the best option.

I had a long time to read about different therapies for a tumour like mine, while I was spending time at the hospital and I read dozens of articles about the options and outcome and, believe me, my conclusion is that rad + chemo is not the best option, neither in relation to outcome and prognosis, nor side effects. In fact, surgery has the least side effects of all, and of all kinds of surgery, TORS is the most advanced and precise.

We, understandably, all come to a point where we doubt that the therapy we had was the best. I've been there many times too since this all started.

Cancer therapy is a destructive process and is bound to get anyone frustrated and sceptical. Don't you think?

Clearly it is a destructive process.  I know, in terms of survivability, this 3 course action has best rate.  But, MAN, did I have a hard time postop.  Today is exactly 2 weeks and my throat is finally feeling a little better.  I do not know why, but I STILL cannot swallow "properly" and have my NG feeding tube (what a pain in the nose!)  We are scheduled to see a surgeon Friday who might do a gastric tube and get rid of this nasal one.  
My radiation oncologist said I will be getting what I think I remember you getting... 60 and 55 g and even a little to the side not affected, for good measure I assume.  So just about the time I might actually start eating again, I will begin the side effects of rads and deal with all that.  So here comes loss of taste, sore throats, fatigue and the rest of the complications associated with killing cancer. 

I also recognize that dealing with these issues is superior to a terminal diagnosis, and for that I am grateful.  

At this point I have to believe that these postop issues are *worse* than what I will deal with from the rads.  (I certainly hope so) even if the rads issues last longer.  This seems kinda like a "radiation boot camp" for me.  At least I won't be up all night coughing and throat clearing over top of a surgical wound...man was THAT painful.  I really look forward to swallowing again so I can use this Vitamix my sister bought for me for this.     Ice Cream here I come!!!

How are you progressing through your last few weeks of tx now??

Don (beagledad)

Mattie65 said:

Hey BeagleDad

I also had a very hard time post-op. Never been hospitalized before, in the first place, so that was a hard thing to swallow already. Alone in a different city because my doctors said the teams were better there. Woke up, post-op, to find out there had been much more work done on me than predicted. Doctors initially thought it was just a small tumour, then it was a T4 and I went through 9 hours surgery.

My time at the hospital was horrible for me. Feeding tube for half of my stay, the other half intravenous feeding, which is worse. You're just always hungry, always losing weight (I'm a thin person) and always tied to an infusion, all day and all night. I felt miserable. They took a free flap from my arm, so that one arm was bandaged. Took one from my  belly too, to repair my arm. Then I finally got a PEG, which caused an inflammation and had to be removed.

I went through pain and despair. I'm not the kind for despair, I tell you. Been through very harsh times from early in my life, never had to be medicated. This time, I begged for a sedative. Literally cried in front of the doctors in a nervous breakdown. I'm usually a fighter but every person has his limits. Had to take a sleeping aid for some nights too. I was a pile of misery, to the point where I reminded myself that there are many people enduring life in prison camps, who have a much harder fate. That's how far this all went under my skin.

But then again, I met one person there whose post-rad and post-chemo fate was so hard, due to receiving more rads and chemo than their body could tolerate, that I accepted that surgery was a way of distributing the damage equally, so that the body had a chance to recover.

For me, hospital was the real boot camp but I'd say that 75% of what was done there, in matters of "destruction", is okay now, 4 months ofter op. Some will remain. Half my tongue will probably stay numb, but That okay, I guess.

As to rads, I'm at 20 sessions now. I get the same as you, approximately: 60 and 54. Most of it unilaterally. I suffer from dry mouth, but only at night. Hope it stays that way but I'm in good hope. Taste issues were the worst, which is why this thread exists. Even they seem already a little less bad due to the constant bad taste slowly going away. I live on calorie drinks. They don't taste any good to me. I can smell how they aught to taste but they're easy to swallow.

Rads are really a surprise bag and side effects can appear even years later, so I wouldn't say they really beat the post-op effects. Those are quite calculable. Rad effects seem much less calculable. That's what makes me fear them much more. I like to know my adversary. Rads are like a ghost warrior who's going to ambush you from unsuspected angles. Perhaps I'm getting a bit too far here, but something like that, anyway.

What I learned: never regret, always look forward, never backward. It could always have gone better, or worse.

Thank you for that detailed response.  I can appreciate the "rawness" of your descriptions.  One thing that caught my attention was that, for each of us, regardless of what we can or want to tolerate, there are others that have gone before and alongside of us with something harder.  

As with most folks, the unknown is the biggest fear of all.  How can one prepare for that which they cannot conceive?  

From what I have read by most folks on this board, your radiation is closest to what I have been told to expect.  Of course, I do not look forward to losing taste nor dry mouth, but I take heart in hearing from everyone that the taste comes back even if the occasionnal dry mouth remains into my future.  Of all things that could "last" I suspect a dry mouth at night is fairly tolerable.  

I look forward to your updates as you navigate these last 13 treatments for I feel they will give me a good insight into what I can expect, at least to a reasonable degree.  I am not looking forward to bad taste nor losing taste, but after what is now 3 weeks without being "allowed" to taste anything, I think I am getting prepared for that reality.  And, to be honest, I like to try to approach things looking at whatever positives I can ... unlike you, I am still 30# over what BMI charts say I should be.  So I can certainly afford to drop 20 or more during treatment.  I need to stay healthy, but if I can be healthy and drop those pounds, then I can take some pleasure in knowing I am finally accomplishing something I would not do on my own.  

Thank you again, be well, and congrats on how far you have come.  

Don (Beagledad)

wbcgaruss said:

Mattie65 Just a Couple Comments

Get with your docs on the trismus as they may be able to help you on it or over here we would probably see what they call a speech therapist who helps with swallowing, speech, etc.

And I don't know if you can get it over there but here I order it online. It is called Boost VHC (Very High Calorie) and has 530 calories per 8 ounces serving.

Keep at it Mattie and before you know it you will be recovered-wishing you the best-Take Care-God Bless-Russ

All them rads and you can still grow a full beard?? I'm jealous!