#39451 11-17-2005 04:26 PM | Joined: Nov 2005 Posts: 79 Senior Member (75+ posts) | OP Senior Member (75+ posts) Joined: Nov 2005 Posts: 79 | Hello - I have not posted before but have been reading from the site on almost a daily basis since I found it. You are a truly wonderful, knowledgable and resourceful group of people. Thank you for all the information and insights you have so generously provided.
My husband has stage III/IV of the left tonsil and is just past the halfway mark of his scheduled treatment - 35 doses IMRT and 3 chemo cycles (cisplatin). I know from reading the postings of others that there is a whole litany of potential problems that can rear their head during treatment. However, I haven't really seen much about heartburn. My husband had his second cycle of cisplatin on Tuesday afternoon ( just over 2 days ago) and has been having terrible heartburn all day.
He has a feeding tube and has only been able to take 3 cans today because he feels so uncomfortable.
Has anyone experienced heartburn related to some aspect of the treatment? If so, did you find a way to relieve it?
Thanks a lot. Mary
Caregiver for John SCC left tonsil Stage III/IV dx Sept 05, tx started Oct 21/05 -IMRT 35, cisplatin 3 X 100mg/m2;completed Dec08/05.
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#39452 11-17-2005 04:59 PM | Joined: Apr 2005 Posts: 58 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2005 Posts: 58 | Hi, Mary --
I too had some problems with heartburn and chemo, though I had another platinum drub, carboplatin. Turns out it wasn't the chemo but the steroid that they gave me concurrently that was causing it and I was prescribed protonix. Worked like a charm!
Talk to the medical oncologist. It is a pretty common side effect.
Tim
SCC Right Tonsil, T2N1M0, Dx 12/04, Tx 40 radiation (180 rad), 8 Chemo (carbo), Tx ended 3/15/05, Selective neck dissection 5/24/05, 22 nodes, 4 levels, no evidence of metastatic malignancy!!! :-)
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#39453 11-17-2005 05:59 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | He should be on industrial stregnth Pepcid AC (Famotidine or some other antacid) as Cisplatin does a number on the stomach lining.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#39454 11-18-2005 12:36 AM | Joined: Nov 2005 Posts: 79 Senior Member (75+ posts) | OP Senior Member (75+ posts) Joined: Nov 2005 Posts: 79 | Thanks a lot for your feedback Tim and Gary. It's very helpful.
Mary
Caregiver for John SCC left tonsil Stage III/IV dx Sept 05, tx started Oct 21/05 -IMRT 35, cisplatin 3 X 100mg/m2;completed Dec08/05.
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#39455 11-18-2005 01:52 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2005 Posts: 624 | Another drug to try is metroclopramide (Reglan) -- it would have to be delivered by tube so not sure if there is a liquid form or if it can be ground up -- this moves materials through the stomach faster. My husband had terrible heartburn at the beginning of treatment (possibly reltade to the insertion of the PEG or perhaps,his body's reaction to the chemo) but the Reglan helped. He also used Prevacid before eating a few times (he ate all the way through). Also, if your husband is taking Oxycodone, that causes a lot of heartburn and to avoid it, my husband started using the Duragesic patch so he could continue to swallow and eat despite a very sore throat and mouth (mucositis). Re the latter, try to encourage your husband to swallow (even if only water) during the treatment as his throat and tongue muscles can lose their ability to work due to disuse, as well as to radiation damage. Admittedly, this may have to wait until you cure the heartburn but then he should try. Our ENT and RO said continuing to swallow is very important, not to hesitate to use pain meds as needed to get past the pain. Gail ---------------------------------------------------------------Husabnd Barry 66, dx SCC right tonsil, base of tongue, 2 nodes 6/21, stage III/IV, HPV-16+ tumor, tonsillectomy 6/21 (no other surgery), treatment at Johns Hopkins started 8/10, 33x tomo-IMRT radiation (66 gy), 7x carboplatin, completed 9/28. Initial exams show good response, full exam will be 12/6.
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#39456 11-18-2005 01:58 AM | Joined: Aug 2005 Posts: 158 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2005 Posts: 158 | Mary, sorry that John is experienceing that discomfort. When I had my PEG put in, my gastro doc asked what chemo drug I would be getting. When I told him it was Cisplatin, he wrote me a script for Carafate in a suspension. I took it four times a day throughout the course of treatment and never had one single onset of indigestion.
Good luck to both you and John. I hope you find some relief for him soon.
Bill
No love, no friendship can cross the path of our destiny without leaving some mark on it forever. - Francois Mauriac
Thank you for leaving your mark.
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#39457 11-18-2005 03:48 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Carafate also works at treating lip sores from dry lips from the rad if you swab it on every few hours--I used it for both indigestion/heartburn and the lip sores. I'm pretty sure I got Reglan --but I was thinking it wsa through my port (via IV) on the days I got chemo.
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#39458 11-18-2005 12:09 PM | Joined: Nov 2005 Posts: 79 Senior Member (75+ posts) | OP Senior Member (75+ posts) Joined: Nov 2005 Posts: 79 | Thank you everyone for your interest and your terrific practical suggestions! Because of your responses I was able to encourage John to phone the doctor today and ask about getting help for something he thought he just had to endure. He was given a prescription for ranitidine, something that reduces the production of excess stomach acid and it did the trick. Some of our drugs may be different in Canada- not sure.
anyway. Thanks so much. Mary
Caregiver for John SCC left tonsil Stage III/IV dx Sept 05, tx started Oct 21/05 -IMRT 35, cisplatin 3 X 100mg/m2;completed Dec08/05.
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#39459 11-21-2005 05:46 PM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2005 Posts: 349 Likes: 2 | Hi Mary... John is fortunate to have you on his side and I am glad he found relief with the Rentidine. Hopefully it will be a good long term solution. I wanted to just add to the pile here and let you know that your husband is not alone with the heartburn. I too developed it about mid-treatment. Although I think it may have started from the Cisplat, more and more I think it is from the radiation now. I still have DAILY bouts of heartburn, and I used to almost never ever get it before. Usually in the mid to late afternoon, and my diet has zero impact. The only thing that works (worked) for me long-term was liquid Zantec. You might look into it as an alternate. It is easy to take via the PEG and offers nearly immediate relief, even for slight upset (sour) stomache in some cases. Since I am not a Dr, I recommend that you and/or John discuss this and remember that there is no such thing as a stupid question of them. He doesn't NEED to suffer ALL the effects to get the affects of treatment. If he is sick to his stomache, has heartburn, dry mouth or other side effects, be sure he let's his care team know since they can mitigate many of them Good luck and please keep us posted.
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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#39460 11-24-2005 09:23 PM | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | Quite a while prior to discovery of my tongue tumor, I was starting to suffer from GERD aka heartburn and was doing the usual recommended things like not eating or snacking for a few hours before bedtime and also putting a couple of 2x4s under the head of my bed so my head end was higher (actually, I live in a small RV, so I put the 2x4s under one wheel to get the same effect).
Interestingly, on GP Doc's advice I went on a low-carb diet to reduce cholesterol (it did) and I noticed that my GERD also went away, but if I slipped off the low-carb diet, the GERD came back immediately -- I happened to be talking to another RV couple, one of whom had recently been diagnosed with diabetes, so they both went on low-carb diet -- The other person, a GERD sufferer, also noticed that the GERD went away as long as he stuck to the diet.
I haven't yet gotten into the nitty-gritty details of the various meal replacement concoctions that are available, but one of my goals will be to choose ones with lower carb percentages. Food for thought.
Pete
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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#39461 11-26-2005 05:14 PM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2005 Posts: 349 Likes: 2 | I've personally been on and off the Atkins diet a few dozen times over the last 10 years. Since I had no history of GERD prior to the radiation tx, I have made that the connection. Besides, I noticed the main side-effect of a low to zero carb diet was constipation. Seems like there's no such thing as a free lunch 
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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#39462 11-28-2005 01:05 PM | Joined: Apr 2003 Posts: 136 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Apr 2003 Posts: 136 | at my 4 yr check last week, my ENT asked me about GERD. i have a high pain threshold, so said that it didn't seem to be a real problem... actually i've put up with it for quite awhile.
he told me that he could see signs that GERD was winning and perscribed ranitidine 300mg @ 1 per day. he also said that he had read a report that linked GERD to an increased risk of cancer recourrance. who knows? anyone else read that?
anyway after a week on the stuff, my life is much more comfortable. there was no need for me to suffer in silence.
cu, larryb
'01 diagnosis.. jaw hing and base of tongue. surgery not possible. JHU used radiation and chemo to seemingly rid me of the beast. peg for about 19 months. 100 cases of 24 cans of liquid food. 9 months eating therapy. 3x esophagus stretches. non-smoker. previously a social drinker.
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#39463 11-28-2005 05:49 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | larryb, statistically, one of the risk factors for esophageal cancer is being a head and neck cancer patient/survivor. A couple of others, which we have heard before, are smoking and alcohol consumption. Untreated GERD can damage cells in the esophagus, leading to a condition known as Barrett's Esophagus, in which cells are classified as pre-cancerous. Some damage can be healed by the ingestion of proton pump inhibitors (Prilosec is one). The generic Zantac you are taking will definitely relieve symptoms, but is a step down from the PPIs in treatment terms. This is a highly simplified overview. For more specific and detailed information do a search on http://www.medlineplus.gov Just one more thing to keep on top of. | | |
#39464 11-28-2005 08:52 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Hello Mary,
Sounds like you resolved the problem you were asking about. Thats one of the best benifits of belonging to this forum. Someone with similer treatment will always respond when asked. He will need more than three cans to maintain, heal and gain weight. You can mix in a whey protein powder (GNC) along wit CIB(Carnation Imstant breakfast) to boost his nutrient intake. I was at 126 lbs three weeks ago and have gained 10 pounds since than. I do have a peg tube and have no problems with it at all. If he can swallow food that should be the first choice for him. I have swallowing issues.
Welcome again, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#39465 11-29-2005 02:38 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Something I was reading recently mentioned the fact that normal saliva has components that help to neutralize stomach acid. This made me wonder whether the impaired salivary function that often follows radiation is enough by itself to create a greater risk of GERD and esophageal problems. I haven't found anything that specifically addresses this -- does anyone know whether this is true?
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#39466 11-29-2005 03:37 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | Cathy, I think that may be entirely possible, as it is recommended that people with heartburn chew gum to increase saliva production. It makes me wonder if H&N patients with impaired salivary function should routinely take antiacids, as I do know that GERD can exist with no symptoms. All of which does not answer your original question, I am afraid. | | |
#39467 11-29-2005 04:15 PM | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 67 | Please be aware that if you are having an acid stomach problem 2 days a week or more, that you need to get on a proton pump inhibitor like Nexium, Prilosec OTC, etc. The long term consedquense is the possible development of Barrett's esophogus which can transform into esophogeal cancer, and is the primary precursor to it. Chronic use of conventional anti-acids instead of a PPI will mask the symptoms of Gerd and allow Barrett's to develop over years. I like others, have a upper endoscopy every two years and are on long term use of PPI's to keep things in line. When in doubt visit a GI doc to have a chronic situation evaluated and a diagnosis of GERD determined.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#39468 12-04-2005 12:13 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | My RO did tell me that the reduced saliva fucntion might cause problems with acid in the stomach. I never had a problem until I had the laryngectomy 4 years later and was put on rantidine 150mg 2Xs a day. This was supposed to make certain that I had no acid reflux after the operation. While I do not feel I have GERD, I do have a massive amount of intestinal gas and bloating so after two years on ranitidine switched to Prevacid 40mg 1X a day. Seems to work better, but still have intestinal gas. All this may be totally unleated to rad and simply irritable bowel symdrome. I'm still trying to figure it out. Drs haven't.
If I have GERD, I have it with no heartburn. Is that possible? I have mild hiatal hernia, but rarely experience any reflux that I am aware of unless you stand me on my head and repeatedly tell me to drink barium because I am doing it wrong until I can't take anymore. GI doctor says esaphagus is all clear.
The thing I wonder is if the Prevacid is reducing the acid level in my stomach so much that I am not properly digesting food. ie. Maybe I don't need it all and it is only causing problems. I'm tempted to try a month without it to see what happens with the stomach bloating/intestinal gas, but haven't had found a good time to do it. Right now keeping a journal of all food eaten and all gas/diarrhea problems to see if I can establish any pattern. Will see what happens.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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