Radiation

LiseA

My path report, which is still confusing after meeting with the oncologist and surgeon's PA (he's almost always away!), says the following:

 

Metastatic scattered viable squamous carcinoma clusters in one lymph node.

Extracapsular extension. Rare atypical sub mucosal squamous clusters, squamous mucosa and submucosa with fibrosis.

I know that MDA is supposed to be one of the best, but honestly, it's always a battle to get someone to explain things to me, or to even hear what I'm saying.  

The only one that ever took his time to listen and hear, is the plastics Doctor. The oncologist and surgeon are like way out there as well as the radiologist.

So now I need radiation, and I've been reading old posts about radiation and it sounds bloody awful!  I'm wondering if anyone continued to do light exercises, used acupuncture, and attempted smoothies with real food items and not those dreadful processed mixtures.

I make smoothies with almond milk, whey protein, berries, banana, chia seeds, and add two packets of VSL DS probiotics. It's prescription only. Helped me to beat c diff a few years ago, and keeps my UCA in remission.

Do we have anyone here who was used to eating healthy, and working out regularly?  I cannot imagine spending all day and night sleeping from fatigue. I didn't let my grueling surgery keep me bedridden, so wondering how radiation is going to work out. 

 

CivilMatt

treatment

 

LiseA,

 

Staying active and mobile is always good.  Whether you feel good enough to participate in pre-treatment activities is unknown until you get there.

 

Eating healthy during treatments is very desirable, but what your body demands during treatments are often “the best you can do”.

 

Somehow the cancer found a way in to your body and you might want to choose the tried and true most successful methods of eradication.

 

Choices are many and treatments can be brutal, but I wish you only the best.

 

Matt

 

SusanUES

The shakes...

Hey Lisa, sorry you have to confront this.  You may be different but I found eating impossible after rads and for quite some time to come.  And I agree with you...the processed stuff (like Scandi and Ensure) is not healthy but it's what kept me alive for several months.  I asked the oncology nurse about this and she very quickly and crisply said, "Susan, at this point that's not an issue...we need you to keep the weight on and you can make up the healthy eating when you're better." She was right...now I'm back to beets, peppers, all the nutrient packed stuff.  So don't worry about the intake of the other stuff...it's temporary and you'll flush it out of your system quick enough. 

Chia pudding might work well for you...you can thin out the easy receipe and you might well be able to tolerate that okay.  Get some George's Aloe, too.  Re the workouts, honey, I've never worked out in my life...but I worked full time every day through rads and during its aftermath...and I went out socially many evenings, too.  Many times I felt like crap but I pushed myself.  Just do what your body tells you it can tolerate...you're gonna be fine!

swopoe

My husband wasn't one to work

My husband wasn't one to work out, although he did like to hike, being a geologist. But he did work through all of his cancer treatment and only took a week off after the treatment was all done. His docs said he was perfectly healthy except for the stage 1 cancer. Go figure. As far as eating, he was told to eat anything he could. The dietician even told him to blend a piece of cheesecake to make a milkshake. So anything you can eat is good. It is a matter of survival. Now 4 months later, he is back to his usual diet- veggies, fruits, meat, coffee, ice cream, anything he wants. You do what you have to do to get through. Staying active to keep your mind on something else is always a good idea though. Best of luck.

LiseA

The reason I have to watch

The reason I have to watch everything I eat and drink Is because of allegergies and intolerances.

I am allergic to rice, corn, yeast, peanuts, oats, cinnamon and cloves, all types of peppers hot to sweet.

I am gluten intolerant (celiac). It's not easy finding prepared foods or even to be fed by tube in hospital. It took them weeks before surgery to finally find something that didn't have an allergen.  

I am allergic to morphine, Demerol and codeine, and several antibiotics.  I have problem with certain ingredients in toothpaste, and allegens to fragrance in body products, and natural flavors added to foods. 

Most products on the shelf are unsuitable for someone like me, so when the nutritionist first said I have to get calories in so stock up on Ensure I was stunned. She already had in my file that I'm allergic and Intolearnt to so many things.  This is not going to be easy for me if I can't consume what I am used to right now. I have asked them to help me find something that's safe in a shake form for when things get rough. That is not an easy task.

 

God help me. 

LiseA

SusanUES said:

The shakes...

Hey Lisa, sorry you have to confront this.  You may be different but I found eating impossible after rads and for quite some time to come.  And I agree with you...the processed stuff (like Scandi and Ensure) is not healthy but it's what kept me alive for several months.  I asked the oncology nurse about this and she very quickly and crisply said, "Susan, at this point that's not an issue...we need you to keep the weight on and you can make up the healthy eating when you're better." She was right...now I'm back to beets, peppers, all the nutrient packed stuff.  So don't worry about the intake of the other stuff...it's temporary and you'll flush it out of your system quick enough. 

Chia pudding might work well for you...you can thin out the easy receipe and you might well be able to tolerate that okay.  Get some George's Aloe, too.  Re the workouts, honey, I've never worked out in my life...but I worked full time every day through rads and during its aftermath...and I went out socially many evenings, too.  Many times I felt like crap but I pushed myself.  Just do what your body tells you it can tolerate...you're gonna be fine!

I totally get this, Susan. 

I totally get this, Susan. 

Drivingdaisy

Check out Orgain Shakes

Hi LiseA,  I too am allergic to many things.  Did not like the Protein/Replacement shakes they recommended.  Too many allergens and chalky taste.  I found "ORGAIN" organic shakes.  Was able to get them at Walgreens Drug, cheaper than Amazon.  Do not know where you live, so if you can not find it by you, you can order it. I bought the ready made shakes but they have powders also.  Worth checking out.  I am allergic to milk, which it contains but no negative reactions.  Found radiation and chemo can charge how your body reacts to many things.  I have been allergic to codeine for years but am able to take it now.  Thankful.

LiseA

Daisy, thank you!! I will

Daisy, thank you!! I will look for it. That's really helpful, and interesting about allergies and after treatment. Are you doing well now?

Drivingdaisy

LiseA said:

Daisy, thank you!! I will

Daisy, thank you!! I will look for it. That's really helpful, and interesting about allergies and after treatment. Are you doing well now?

After treatment

Hi LiseA,  Daisy (Lisa) here.  Thank you for asking.  I am 1 month done with treatment.  I'm doing OK, but dealing with the many side effects like the others have.  I am still drinking Orgain shakes.  I found if I can only get Vanilla flavor I add chocolate or strawberry syrup to it.   Hope that everything goes well with your treatment.  As you have read on this forum, it will be tough but "Hang Tough", you can do this.  Hugs, Lisa

LiseA

You are another Lisa?  That's

You are another Lisa?  That's great :-).  I hope you get to feeling better soon.  I'm trying to educate myself as much as I can, and make a list of potential things I could try.  How is the fatigue?  Any ease?  What about your mouth? Sores or pain?  I can't wait to say I am done. Eating as much as I can, walking daily, listening to music, trying to enjoy life, and going to see Jersey Boys Saturday. Might as well do as much as I can before I go off to war!  A wonderful soldier friend told me this is like war, so arm myself and make sure I come back a hero, lol 

LiseA

From what I've read, Orgain

From what I've read, Orgain has brown rice in it, and I'm highly allergic to rice :-(

Seems like I'll have to invent my own high calorie, high protein shake.  

wmc

Just my thoughts.....

I agree with Matt.  I also would do surgery first, then chemo and rads. Yes, this is the second roughest treatment to go through. If you find you need surgery later, and some have, having it after radiation is so much harder due to the damage from radiation. I would want to go as aggressive as you can to rid yourself, you are fighting for your life. Some have had much success with even still working and exercising through the radiation. Others have had the tar knocked out of them. Trying to wet "Healthy" is good. You do know that bland junk in the bottle [jevity] is healthy, just is not that good to taste.

Many seem happy that it is HPV, and it does respond very good to chemo and radiation. It also has a much higher rate of returning. Sorry, I am not trying to be kinda negative, But I am just giving facts and what we have seen here. Many have had it return. Most will advise going with the tumor board comes up with as they do see and treat this all the time. If they say they don't recommend surgery and you have complete faith in them and feel they have explained everything to your satisfaction, go with it.

I do wish you all the best in your decision.

Bill

Drivingdaisy

Hi LIseA

I noticed the brown rice but wondered if it would be enough to set off your allergies. Dont know your reactions.  As I mentioned, I was diagnosised allergic to milk right before my cancer diagnosis.  Use to really upset my digestion.  Now, I have been drinking and adding milk to most of my menu items, so far no stomach/intestine problems.  I did make up some shakes from scratch.  Used choc whey or Carnation Instant Breakfast with coconut milk.  I would recommended if you make it yourself, make enough for the day and maybe next morning.  As you go along in treatment, you may not have the energy to make-up individual shakes for each meal.  I use The Nutri-Bullet to mix up a big batch.  For me, I could not add fruit (too acidic, would burn) and often greens made it to thick to put in my feeding tube or the flavor was off.  Just play around now and see what works for you.  But be prepared, your taste may change during treatment.

Drivingdaisy

LiseA said:

You are another Lisa?  That's

You are another Lisa?  That's great :-).  I hope you get to feeling better soon.  I'm trying to educate myself as much as I can, and make a list of potential things I could try.  How is the fatigue?  Any ease?  What about your mouth? Sores or pain?  I can't wait to say I am done. Eating as much as I can, walking daily, listening to music, trying to enjoy life, and going to see Jersey Boys Saturday. Might as well do as much as I can before I go off to war!  A wonderful soldier friend told me this is like war, so arm myself and make sure I come back a hero, lol 

Another Lisa : Treatment

Me again.  My diagnosis, SCC Left Tonsil mass Stage 3.  Radiation 5xwk for 7 wks.  Chemo (Taxol/Carboplatin) 1xwk for 6 wks. No surgery.  Treatment was extremely tough and painful. I so wish I would have found this forum before or during my treatment.  So much information, 100% more than I got from my Doctors.  Everyone is so informative and supportive.  So glad you found this group before you startEd.  Will help you allot.  My mouth sores/Mucusosis started towards the end of 2nd wk.  It was extremely painful, had to take major pain relievers that barely relieved the pain.  Should have started the MuGuard from the beginning, may have helped more but did use it from 2nd wk on.  Salagen for saliva.  All of the Oral gel and Biotine products.  Baking soda/water rinse.  Salt water makes me sick.  Magic Mouthwash and Mylanta rinses. Lucky, never had nausea (even with drinking milk).  As for fatigue, I did not get allot of sleep due to the mouth but tried whenever I could.  Lucky again, I was tired but not "bone weary".  I did not work, just read, watched movies, colored ( excellent for distraction from pain) brain puzzels.  Had to have a PEG tube put in the 3rd wk.  Could not even drink water by than, mouth and throat was just too painful. Could not talk.   All nutrition was through my feeding tube.  I still have my tube but use my mouth to eat/drink most of the time now. Very important.....the skin around your throat will get a bad sunburn from the radiation.  I used Gold Bond Ultimate Healing with 7 Moisturizers, 100%Aloe Gel, and SSD 1% Silver Sulfadiazine Cream.  My routine was:  NO creams on before treatment.  After treatment, Aloe Gel (kept it in the refrigerator) than the Gold Bond. Whenever my skin on my neck and face felt the least bit dry, on with the cream.  When my neck started getting really red and ready to blister I applied the Silver Sulfadiazine cream to the area every night till dead skin sought off and applied lots of Gold Bond and aloe to keep it moist. Ask the Radiologists Nurse for help with this.  I was very lucky again that my neck did way better than the Doctors imagined. Since my mouth inside was a painful mess, I tried not to have the outside match.  I did have 1wk off of treatment in the 4th wk due to mouth/pain meds situation.  If this hampered my outcome I do know, but I do know if I would not had the break, I may not have finished.  So, that was my journey through treatment.  Each and everyone's is different.

LiseA

Thanks, Lisa.  My husband

Thanks, Lisa.  My husband will be there to help me.  I'm trying to find whatever I can use to boost my shakes and get enough of what I'll need. You've been so helpful :-) 

My rice allergy was severe. Throat closing up, and body covered with rashes. Intestinal issues also.

Bill, I had the brutal surgery end of March and still dealing with fatigue, jaw and neck pain and stiffness as well as forearm numbness where they took the vein and graft, on top of ulcerative colitis and Mastocytosis reactions, so I've been trying to rest, exercise moderately, and eat as much as I can. Have lost a few pounds since surgery, and from UC flare. 

swopoe

For skin, my husband used

For skin, my husband used aquaphor. Bought a big tub of it. He put it on everyday right after his radiation treatments and again before bed. Twice a day on weekends too. His doc and nurses were so impressed with how well his skin fared. And he is a pale, blonde haired guy too. He never had weeping skin, blisters or anything. Just mild redness. I would try the aquaphor for sure. It was a lifesaver for him!

SusanUES

Agree re the Aquaphor...

I had the big tub too...gunky and messy but really works!  I only had one raw patch underneath my chin and some redness, not bad at all.  A little hpyer-pigmentation after rads but that went away, too.  Two thumbs up!

Lisa, sorry to read about your sensitivities...that is indeed tough.  Try making the chia pudding with lots of almond milk and very little chia (let it soak well overnight so it's soft and the mixture is less pudding than soupy)...that should slide right down your throat.  I became so addicted to it that I continue to eat it every morning.  Now I add fresh pomegranate seeds, maple syrup, crushed almonds to the mix...yummy.

Good luck, honey...keep posting!

LiseA

Swopoe, thanks for the tip. I

Swopoe, thanks for the tip. I'll get a big tub.  I'm guessing that no type of moisturizer can be om face or neck right before radiation? Only afterwards? 

Susan, in some ways, after having dealt with UC since i was in my teens that it helped me to be tough, plus two ginormous babies and putting them through college as well, lol.

Great about the chia pudding. I'll make up some to try before.  I got the dark chia seeds. Does it matter? I am thrilled to report that I found powdered soy milk, non GMO and organic on a site online. That could be added to the shakes to give some more protein and fat.  I can't do dairy much. Just this past werkend I had ice cream and spent two days running to the toilet. The ice cream was good though.  I just don't want to trigger my colon to misbehave during treatment. Super excited about the soy milk. My daddy always said, "where there is a will, there is a way."

swopoe

LiseA said:

Swopoe, thanks for the tip. I

Swopoe, thanks for the tip. I'll get a big tub.  I'm guessing that no type of moisturizer can be om face or neck right before radiation? Only afterwards? 

Susan, in some ways, after having dealt with UC since i was in my teens that it helped me to be tough, plus two ginormous babies and putting them through college as well, lol.

Great about the chia pudding. I'll make up some to try before.  I got the dark chia seeds. Does it matter? I am thrilled to report that I found powdered soy milk, non GMO and organic on a site online. That could be added to the shakes to give some more protein and fat.  I can't do dairy much. Just this past werkend I had ice cream and spent two days running to the toilet. The ice cream was good though.  I just don't want to trigger my colon to misbehave during treatment. Super excited about the soy milk. My daddy always said, "where there is a will, there is a way."

That's right. Nothing on the

That's right. Nothing on the skin right before the rads. Put it on right after you are finished. 

amcowan

Feeding tube

My husband is 4 weeks post treatment. He is still using the feeding tube for at least 1000 calories/day and swallowing 700 or 800 by mouth. Anyone have experience with keeping the feeding tube beyond 4 weeks? He can swallow but still experiencing pain. He was treated for base of tongue cancer. Thanks for any input.