Is post radiation heartburn common?

Larry449

I’m 19 months post radiation for base of tongue cancer. Radiation killed the cancer as well as some taste buds and saliva glands. Because of dry mouth and that damn “velcro” at the back of my tongue I still have trouble eating most real food that seems to turn into sawdust and doesn’t want to go down. So I’m still living mostly on high calorie but healthy smoothies. Lately I’ve been having really bad heartburn that feels more like it starts in the back of my dry mouth instead of the typical reflux coming up. I had a neck CT scan two weeks ago but the report doesn’t seem to explain it.. “No evidence of recurrence or metastasis..” etc. My radiation oncologist is no longer in the picture (long story - the facility closed) but I see my ENT (who originally diagnosed the cancer) in three weeks. Maybe he can explain it or … if it has anything at all to do with the radiation.

Tnx, Larry

wbcgaruss

Hello, Larry, I am glad you are still hangin with us and dealing with what they call our new normal as best as you can. Let me first start with velcro at the back of your tongue and then food turning into sawdust. I am not sure about the Velcro affect except to say it might be a narrowed area since radiation that seems to catch or hold stuff. I had narrowing of the throat, I guess it is the esophagus, from radiation, and had a total of 4 dilations over a period of time to give me a larger opening back because I had trouble swallowing things down and pills would get stuck. So when you see your ENT you may want to run this possibility by him and see if that could be playing a part in what you are feeling. As far as regular food seeming to be like sawdust, after treatment and dealing with dry mouth, many foods I have to take them in my mouth and chew a bit and then sip some liquid and chew some more so it ends up like more less a liquid type or mushy mix and easier to swallow. Remember you are trying to simulate saliva levels to pre-treatment times. I find using soda or a flavored drink works best because water takes flavor away from the food making it seem bland since my taste is already diminished from radiation effects. I don't know if adding more liquid would change anything or not. How is it with soups, or thick soups, or something like mashed potatoes for you which should be easy to swallow and pretty liquidy, do they also give you that sawdust effect?

As far as heartburn or upset stomach I don't necessarily think it is due to radiation at least not in my case. After my first major cancer event in 2013, I believe I was taking omeprazole partially at the end part of treatment and for some time afterward due to nausea and upset stomach. I can't say I had reflux but possibly heartburn. I eventually quit taking it.

Fast forward to 2019 when I had another major cancer event involving surgery and a long hospital stay and during that event, my upset stomach and nausea started again in which I remember them skipping feeding tube applications due to me feeling nauseous. So I am sure it was about that time I was started on omeprazole again to combat that. I then went to a hospital rehab for 10 days and then home and was discharged with a prescription of two omeprazole a day instead of the regular dose of one capsule a day. I was on that dose for quite a while and finally went down to one pill a day which is the dose I am still on to this day. I did get follow-up radiation for this case a bit later but I was already on the omeprazole so I don't think that played into it.

So I say all that to say this. In both of my traumatic cancer events, it caused stomach and nausea problems. I think going through this kind of major medical event or cancer event for people is a major assault on our body and system in general and as a whole and can trigger different things for different people. So I don't know if it is necessarily connected to radiation or the whole thing we are going through. So I think major medical events of any sort can have effects on us. Think back on what you went through during cancer treatment, do you feel like it had a major impact on your life and on your system? At least this is as best as I can figger it. When you see your ENT you may want to run some of this by him and get his opinion if a medication may help you get through this and maybe phase it out later down the road. I hope my long rant of nonsense had a little sense mixed in and it helps in some way. These are just my thoughts from my experience. Others may vary.

Wishing You the Best

Take care, God Bless-Russ

Larry449

Russ,

Thanx for your reply. It may prove to be helpful. Some points; The Velcro thing is a description (?) that I came up with because that's kind of what it feels like. If the foods that I can't get down without washing them down, it seems like they are actually sticking to the back of my tongue right where it meets my soft palate. You suggested potatoes. Yeah, I was surprised to find that potatoes, even mashed as smoothly and liquidy as I can get them, have a gritty texture. Same with peas. Surely I could eat pea soup, used to love it , but nope. I guess I could wash them down but like you said, water kinda makes them tasteless, and honestly it's not worth the effort. Another surprise; One night I had a sweet tooth but the only thing I had was honey, so I tried a teaspoon full. I damn near choked because it stuck to the back of my tongue and I ran to the sink and hacked it out. (sorry for the mental image). Chasing with water didn't help. Surprisingly, on two occasions, one at my daughter's (fantastic cook) and one at a restaurant, I was able to get down, and enjoy fish stew and a shrimp soup... except for the potatoes in my daughters stew.. she said next time she'll leave out the spuds.

My ENT says it all takes time and since the cancer's gone, I should look at it like 'the glass is half full'.

Esophageal dilation: My ENT actually suggested this but that was just a few months after I'd had an endoscopy and the GI Doc said he didn't think it necessary. I'll run it by both doctors again. You might be onto something. I take four quite large pills every morning that only get stuck if I don't take a large enough gulp of water.

Omeprazole: yeah, I am also being treated for RA with methotrexate. Of all the other heartburn meds I've looked at that had bad inter actions with other prescriptions, omeprozole's only severe reaction is with methotrexate (according to Drugs.com drug list) I do take a relatively low dose so I'll be asking my Rhuemy about that.. I'd like to get off it anyway. The heartburn, like you said, doesn't seem to come from reflux. I've had that before. This ain't it.

And I don't see your replay as a "rant of nonsense". I think it will be helpful. I tend to get more useful information from this forum than I get from local doctors.(I could write a huge rant about that, but my fingers are getting tired!) I don't come on here often but I recognize you as someone who has answered my queries before.

Thanks again,

Larry

wbcgaruss

Larry, you certainly have different things going on. Your experience with mashed potatoes, pea soup, and the honey episode is certainly unusual but going through the treatments I am sure people get all the normal things that happen to them during treatment and post-treatment, things your treatment team is familiar with and things that are a little different such as you are experiencing. I find it surprising you can’t get pea soup down, but that is the case, though we would think of soup as something easy to get down. Then you had a couple of meals you got down and enjoyed no problem. Such is the H&N experience, we never know exactly what we will end up with post-treatment even though the team you have tried to minimize the effects as much as possible. I can’t say I am familiar with the reactions you are having but they are part of your case. So sometimes post treatment happenings are unique and very few other people experience the same thing. So, Larry, your side effects are somewhat different but still caused by your treatment.

Your ENT has probably seen it all and when he says it takes time and since the cancer's gone, we should look at it like 'the glass is half full' is a good way to look at it. Hopefully, with the passage of time and a little help from treatments like dilatation, swallowing therapy from a speech therapist may be and research, much of your issues will hopefully work themselves out or at least become very tolerable and you can deal with them easier. You are right there is some very useful information and help here for H&N folks because these folks on here have lived it and want to make things easier if possible for others.

Larry, I hope you find some answers and solutions to your situation

In the meantime hang in there and never give up.

Take Care, God Bless-Russ

Larry449

Russ,

I’m afraid I’m going come of as a whiner, but I’ll give it a shot anyway. Admittedly, it has been quite awhile since I tried the pea soup. Maybe I’ll try it again. The potatoes tho’ were fairly recent, even the pieces in the fish stew my daughter made.. nope.

Now for the whiny bit: You and several others I’ve heard from here mention my “treatment team”. Didn’t really have one. After trying to ignore that annoying spot in the back of my throat for too long, I went to an ENT. He scheduled a swallow test for me, then scheduled a laryngoscopy and biopsy and finally the diagnosis. He referred me to a radiation oncologist, actually called her while I was still in his office and I got an appointment for the very next day…. I’ll say now that I have no complaint about the ENT.

From there I had a radiation oncologist who sent me to a facility to get a feeding tube. She didn’t seem to know much about feeding tubes, just knew I’d need one. She also gave me a prescription for Jevity but had no idea where to get it - after many phone calls on my own, I found a supplier who said to have the doctor fax the prescription and I’d be covered by medicare. (I actually bought my first two cases from Amazon before the prescriptions started arriving but FedEx.) That’s my team in it’s entirety: ENT - Radiation oncologist - the Catheter Doctor who put in the PEG tube and ultimately removed it. Oh, I forgot the home nurses who came to the house four times, I believe ordered by the catheter doctor. The first nurse that came, when she saw the tube said “I’ve never seen one like that”. Encouraging.

The feeding tubes are a story by themselves: I had 4 inserted before one that didn’t get loose or leak..4 in as many weeks. Had that one for 6 months.

I had a routine visit scheduled with my PCP shortly after I’d weened off the feeding tube. I complained about not being able to eat. She referred me to a dietitian and a speech therapist who then ordered a modified barium swallow study and subsequently referred me to a GI for an endoscopy, which came back clean and the GI said he didn’t do a dilation because he didn’t think it was necessary. My Oncologist hadn’t mentioned any of this. I only learned about the edema in my throat and massages that might possibly help on this forum. Again, nothing from the oncologist. Needless to say, while l’m glad that the radiation took out the cancer, over all I wasn’t very impressed with the “team” that was available to me in this area.

(A side note - the radiation facility has shut down, a situation I don’t completely understand but it had something to do with the facility’s lease not being renewed for lack of rent payments! I’m glad I got thru my radiation. I wonder what happed to folks who may have been part way thru their treatment. The facility shut down quite abruptly. The next closest radiation facility is 40 miles away.)

I’ll keep trying.. last night after my last smoothie I had the munchies but nothing in the house to munch on. Today at the store I bought some fruits cups, sliced pears. Got one down this afternoon, not really what I could call great, but edible. Also grabbed a small pint(?) of Americone Dream ice cream for later. I’d given up dairy years ago but I don’t think a little ice cream will kill me🙃

Well, again, I’ve gone on enough so…time to put it down.. The glass is half full!

ThanX again for your encouragement.

Larry

wbcgaruss

Well, Larry, thanks for going over your cancer experience and treatment. Thanks for describing your cancer/treatment team. When people on here refer to their team it could be a few or many. I would say your team wasn't large and doesn't sound very impressive, nor do you sound very impressed with them and I don't blame you. I have to give you even more credit for getting through this than your care people, by your description, they don't sound like they are on top of it so to speak. I realize now how extra Blessed I was for my cancer treatment. Like you, I saw my ENT first and he could scope me and saw I had throat cancer and his office took care of everything from there, scans, meeting with radiation and with chemo set up, and all at the cancer center we have here. I was assigned a nurse navigator/nutritionist who I could call anytime if needed because she carried a pager if there was an emergency. They set up my feeding formula for me and had it delivered to my house. I am a little embarrassed to admit I was pampered compared to the way you went through it. I am very glad for you that you completed your radiation treatments before the radiation center shut down, I think it would be tough changing mid-treatment and then you would have to drive 40 miles, wow. I am glad you made it Larry and I hope and pray you start seeing some improvements where you need them. If there is anything that I can think of I will let you know. You said you see your ENT in three weeks, maybe he will have some insight to help you. This cancer treatment recovery is a slow process so it is possible some of your issues will still resolve over time but at some point, we are past that window and we are where we are.

Wishing You the Best Possible Outcome Larry

Take Care, God Bless-Russ

Larry449

One more, Russ. My team: The main hospital here is Parrish Medical Center. For the first xxx? years it was named Jess Parrish Memorial. The locals here called it Just Perish. It was mostly tongue in cheek but it stemmed from a reputation that wasn’t one of the best. The radiation center I went to, while it says Parrish Cancer Center on the building it was operated by Omni. It closed due to some kind of conflict between the two medical systems. …. That in itself wasn’t really the problem (at least for me) but the doctors here don’t have a good reputation for working together.

By contrast, at the end of 2016 I was diagnosed with prostate cancer. My urologist here, fortunately, referred me to a surgeon in Celebration which is about 60 miles from me. The surgeon, Dr. Vipal Patel, is known as one of (if not the) most experienced robotic surgeons in the world. After CAT scans, PET scans, MRIs, X-rays etc., I went thru da Vinci robotic prostatectomy in October of 2017. Post surgery, blood tests showed a little PSA still present. Dr. Patel referred me to a medical oncologist. This doctor, Dr. Alemany, while in the same health system, AdventHealth, is in Orlando which is a little closer to home, about 40 miles. He started me on quarterly Lupron shots and aberaterone (Zytiga), which I’m still on today. I’ve also seen a Radiation oncologist in the same system, actually right downstairs from Dr. Alemany… but decided against radiation for prostate. For my Lupron injections, I go to AdventHealth infusion center a little closer to home. My point: all of these doctors and facilities, while indifferent locations, are all in the same health care system. If I have something done at one doctor/facility, it’s entered in my record and all of my doctors know within hours. They work together!

In hindsight I wish that I’d gone over there for my tongue cancer treatments, but I went where doctors sent me. I didn’t know. But here I am. My MO for prostate had already scheduled a CT scan for chest, abdomen and pelvis. When my radiation oncologist cancelled my follow up appointment, knowing that she’d wanted me to get another CT before the appointment , I called Advent and asked them to add head and neck, which they did. I had my scans (w/o contrast because I’m allergic) on March 27, about three week ago. The report for the neck CT reads “no evidence of recurrent or metastatic malignancy” Lymph nodes also clear. For the chest, abdomen, pelvis, CT reads “No evidence of metastatic disease” and goes on to say a small spot on L3 “appears substantially less dense” than a scan from 4 years ago. My MO said “That is a VERY good thing” and while my PSA has been undetectable since starting Lupron, he used the word “remission” for the first time in 5 years!

I guess I’ve gotten off track from my original thread - heartburn - but once I start, well… Before I started typing this morning, I read your profile. You’ve been thru a lot more than I have. It’s almost embarrassing(?) for me to present my problems, but thank you once again for your comments and encouragement.

I’m not a religious person in any sense, but I am glad that your faith has carried you through all this and I hope you continue to heal for a long time to come.

Larry

wbcgaruss

Larry, I didn't realize or forgot you had cancer once before. So you are not new to this intruder into our lives. You certainly had two different experiences and I would agree one was the best and the other somewhat subpar. As I said before you deserve a lot of credit coming through this as well as you did consider the treatment facility and supporting system it should involve but didn't, so you must have a strong constitution. I am so glad your scans are good and your MO said “That is a VERY good thing” That must make you feel very good and very positive, I know it would me. I am glad you had a good experience with prostate cancer and that you saw 2 examples and facilities of health care concerning cancer. Now you know what to look for and how to be a helpful guide to others. And as far as doctors go the guys at work used to say about doctors "They didn't all graduate at the top of their class". That is why people who don't feel comfortable with the doctor of the facility, we tell them to get a second opinion or look to another place for treatment. And of course that is all well and good but I think there are a couple of factors to that. We just want the cancer out of our system and don't want to waste time getting other opinions and convince ourselves that surely these people and facilities have to be the best just to run a facility like this, I am safe with this. And the other thing is some don't have the ability or can't afford to travel farther for treatment. But folks should feel comfortable with their care and confident in their doctors because this is a one-shot deal we don't want to do it a second time.

I am so glad the Lupron is working for you and you even got a pronouncement of “remission”, way to go.

Thanks for reading my profile, it is long so many people may not read the whole thing. It is there to share and let others know that they can get through this. I am no hero just another guy caught in the throes of cancer and treatment and the recovery thereof. You have done a lot too, you have beaten cancer twice. But both our profiles are there to help others. Don't worry I have read profiles and other stories that make me look pale in light of their suffering. One is the recent passing last fall of a member here LitlCjdoll. This woman endured things that would bring a strong man to his knees. She is truly an inspiration to me, but also I find inspiration in you and all the others on here because they have all fought the beast and have their own stories.

Yes my faith and trust in God helped me more than I can say and I don't feel I am religious, I feel I have a relationship with our Heavenly Father which is available to us all.

Larry, hang in there and keep on keepin on and I am so glad you shared your story I am sure it will help others. I am so thankful your tests are coming out clear and your doctors are pleased with your results. Clear scans ahead for us all.

Wishing You the Best

Take Care, God Bless-Russ

And yes also--------

Imjim

https://csn.cancer.org/discussion/326450/is-post-radiation-heartburn-common

Larry, I was diagnosed with base of tongue in September of 2021. I thought I would be devastated but actually never really worried when the treatment finally began. I went through 7 courses of radiation treatment (35 days) and 7 courses of chemo (5 not bad treatments and 2 really **** treatments) under cisplatin, a platinum based drug. Fortunately I knew someone that had the same cancer many years earlier and he reunited me with a former friend that also had that cancer earlier in his life. They both suggested I take the surgery but my cancer was bilateral on my tongue and therefore it wasn't possible.

The radiation therapy was very easy during treatment but much harder in recovery. During recovery I had a very hard time eating anything solid for about 7 weeks after treatment. My total liquid diet duration was about 10 weeks. Mucas crowded or spat out of my throat as I spoke. You might know the drill. Now I am 16 months into recovery and am doing much better. ONE THING I DID THAT I THINK YOU SHOULD CONSIDER IS WENT FOR LYMPHEDEMA THERAPY. They taught me exercises that stretched my throat and gave me almost normal swallowing capacity in about 2 weeks. By practicing those exercises over over a few weeks and periodically over the past several months I am now able to eat potato chips without much difficulty.

Please understand that I am only describing what I underwent in hopes the lymphedema therapy would be helpful. I get where you are coming from. But, please go to the other side of the hospital where they teach you to bring things back to somewhere close to normal. I hope you will be so surprised by the results.

Rock on Larry and I hope you eat a cheeseburger soon.

Jim J. from Branson, Missouri.