Is acid reflux common in people with CLL? I’ve been having it for about 4 weeks. I saw my primary doctor and she prescribed Prilosec 40 for 2 weeks. It’s helped some but I still have a dry cough after eating. What doctor would you see a ENT or gastroenterologist? I also have Mild nodularity of the lingual tonsils. Not sure it’s related.
Any advice would be greatly appreciated.
Thank you,
Sheryl
Smac, a Gastroenterologist is the go to for acid reflux--I just saw my Gastro yesterday and will have an endoscopy (and the dreaded colonoscopy) next month. The endoscopy is for stretching the esophagus which I have had done before--and mainly because I get food trying to stick in my esophagus. AND, the time before last I had that done, the Gastro saw I had Esophagitis and prescribed Nexium for 4 mo. at high dose to help clear that up.
The needing stretching is related as scar tissue builds up with the reflux causing esophageal irritation. Mine is not related to CLL. You may have a hiatus hernia causing the reflux, gained weight can be related. And, I would think there is some relationship to splenomegly (so in that sense, CLL related.
For the tonsil situation. Do see an ENT, and it may be related to CLL---sometimes the B cells can infiltrate the tonsillar area.
Best wishes and let us now how things go. Getting on top of these situations is a good way to stay well, if time and $$ consuming.
Thank you for the information it helps a lot. Sometimes I feel like there are so many doctors to see. I just want someone to take over all my problems. Lol I did make appointment with a gastro doctor for tomorrow. I also want to see an ENT because I had my tonsils taken out 46-48 years ago. So I do feel like those are probably CLL related.
Lingual tonsils are not usually removed as part of a tonsillectomy, and tonsils can grow back. I keep checking for that. One surgery was enough.
Be sure you check drug interactions if you need something for GERD (acid reflux). Almost all off them interact with one of my heart meds. I used to be able to take most of the options without problems, but this med interacts with just about everything (not just meds for GERD). My cardiologist OKed Pepcid only. If I’m having a bad episode I add Gaviscon recommended by my ENT.
1% of population only has laryngitis as a symptom of acid reflux. I went to an ENT doc to see if my vocal cord nodules came back. Had surgery in the 70's. But to my surprise it was acid reflux. No other symptoms. Went to gastroenterologist to diagnose Gerd. Was on Nexium 5 years. That was a huge no no. Got a new doctor and went off of it. Fine since. That was 15 years ago. Was dx with CLL years later so it was not related.
I also completely lost my voice once due to GERD - not good as I was a teacher and a singer! I also no other symptoms and was also diagnosed by an ENT initially, then on to my gastro. I have not had a bad episode like that one again, but do have minor periods of irritation.
I was a teacher too! 💕
Strangely, I had acid reflux nearly every night for a couple months; also had quite swollen neck nodes.
Three days after starting treatment, the neck nodes melted away—& I haven’t had acid reflux since then either (4.5 weeks ago).
Coincidence? I dunno!
My CLL doctor has suggested starting treatment because of the tonsils, post nasal drip, and fatigue. I told him I need time to think about it. I’m also getting a second opinion in March. Thank you!
We’re the tonsils biopsied? The symptoms you listed, other than possibly the tonsils, would not usually trigger treatment. I do know people who needed treatment, because of tonsils, and sometimes tonsils removed, because they were causing problems. You are wise to get a second opinion.
I have not had them biopsied. I still need to see ENT and gastro doctor.
Thanks!
DRMB18 What kind of treatment did you start?
Obinutuzumab & Venetoclax. (Click on my profile to read all my updates. 
The acid reflux disappeared the 1st day of Obinutuzumab.
Thanks. I’m still on watch and wait with new nodes in my neck (exactly where my thyroid cancer was but Endo says not thyroid prob CLL) and went to CLL doc who said prob CLL and when I asked how big do they have to get before something happens. And he said when they get really big then I start treatment and they will shrink ! So here I am choking on liquids as well as food which gets stuck in my throat. Or, forgetting how to swallow with food in my throat.
They will shrink, quite quickly. (I too suffered from food getting stuck in my throat, but treatment ended that.)
Doc said I was far from needing treatment. I think I am an enigma to them because my numbers are not adding up. They are seeing things not seen before. I know that they are taking a tube for their trials . Which is fine with me. I just wish I had more clarification
I asked him how long he thought I had? Would I live another 20 years to see my grandson become a man. He said absolutely. Then he asked “how old is your grandson?” Hahahahahaha ! For some reason I found that very funny. My grandson is only 18 months old.
Lol. Sighhhhhhh
i take 20 mg of nexium daily. I have for years-even before i was diagnosed
Thanks, I’ll look into it!
The acid reducer meds. About a month ago. They have an ingredient that can cause cancer etc. I just got rid of mine few weeks ago. Not recommended to take. Forgot what you can take instead
Nexium is just used temporarily. Says in instructions for 6-8 weeks but some take a little more. Try to Google it. I don't have information anymore. It was all over USA news.
Nexium can increase WBC. Check side effects. 💕
NDMA is mostly found in generic versions of antacids . Zantac brand had some ndma however it;s the fillers used in theses. that was the same reason several prescription blood pressure pills were recalled. It's the fillers not the main ingredient.
Every otc drug you take says only take for limited period of time. read the labels.
However the literature does say not to take ppi's for more than 8 weeks,
However with me if i don't stay on top of my acid reflux i get lesions that prevent swallowing.
It;s damned if you do damned if you don't
I started using Betaine HCL with Pepsin over the last year. I take it before or after a big protein meal and it helps tremendously as a digestive aid by helping me metabolize my foods.
Hi Sheryl
Are you seeing a CLL specialist? Are you watch and wait or on medication?
There is a lot of good information on the internet about acid reflux such as but not limited to timing your eating, foods to eliminate at least for now, raise the head of your bed best with a foam wedge
If it were me I would see a GI over an ENT first but again if you have a CLL specialist that would be my first contact.
Also if you feel the burning acid in your throat drink some room temp water. Hope this helps DLC DDS
Hi Toothdoctor,
I am seeing a CLL specialist and I am not on any medication. I’m still in Watch and wait. I actually didn’t realize I had acid reflux because I’ve never had it before. I thought I was sick in the beginning, but once I felt better and then it came back again I finally realized. I am going to see a Gastroenterologist today.
Thanks for the information.
Sheryl
Hello Toothdoctor.. I'm a dental tech. Not as high profile but fun. Just wish dentists weren't so expensive so I could afford some work
Hi Jayson I don’t know where you live but major universities with dental schools might be the answer. The important thing is someone does not over diagnose
Being in the field I’m sure you are very savvy
Best DLC DDS
Hi.
I don't know if acid reflux is common but it is one of the symptoms that CLL doctors would take account of.
My CLL was first diagnosed about 15 years ago and I was on W&W for 10 years. During that time my blood results steadily increased but the signs that I was more aware of was swollen nodes in my neck, a dry cough and acid reflux with a feeling of abdominal distention.
A CT scan showed numerous abdominal lymph nodes varying in size from a walnut to tennis ball. When my treatment started (B&R) these nodes rapidly disappeared and I have been trouble free until a few weeks ago.
I am now again carrying a burden of many enlarged abdominal nodes and I am on the borderline of needing further treatment (Venetoclax). I am due to have a CT scan of abdomen next week. That result may be the tipping point of the decision to treat or wait.
So, if your reflux is bothering you to that degree, can you suggest or request a scan of your abdomen? It may reveal the source of your problem.
Best of luck. Jeff
Dear Sheryl
For a long time I have had occasional episodes ofwhat I thought was simply heartburn. I've been taking a proton pump inhibitor (omeprazole) for several years as gastro protection because of other medication including steroids.
Last autumn I started becoming hoarse ( a real problem as I am a singer). My haematologist sent me to ENT and when they looked at my larynx, it was swollen. They attributed this to pharyngo-laryngeal reflux, where you actually inhale acid into the larynx. I was started on Gaviscon 4 times daily in addition to the omeprazole and it has worked like magic. I now have a clear voice and can sing better than I have for years!
I think the only way this is related to CLL in my case is because of the steroids I have had to take.
I hope you get sorted out
Charlie Girl
Hi Charlie Girl,
Good to hear about your singing improving with the medication.
My husband says he can hear in my voice when my CLL flares up. I get quite hoase and my voice cracks. I also had bouts of heartburn but I have chosen not to take medication for it. From the start of my dealing with this disease I have complained that it feels like I swallowed a hard candy and it is stuck in my throat. I wonder if these symptoms aren't related to the thymus or the thoracic duct?
I had “silent” GERD. No symptoms at all until the scar tissue got so bad I had trouble swallowing. Was stretched twice. I now take 15mg Lansoprasole (generic name) every other day. It is an older, earlier generation drug. My Gastroenterologist said the problems related to these drugs, (Not the recall problem)in general, are an issue for younger people who take them long term 30-40 years. He said it would probably not be a problem for anyone above the 65 age range to take on a regular basis. If you don’t take care of the GERD, you run the risk of esophageal cancer. As stated above, you are damned if you do and damned if you don’t! I takes as small a dose as possible and do it ever other day, and watch my food.
What was the scar tissue caused from.
Not sure but i have the same problem i am on 30mg of Lansoprazole. Had the camera down and was diagnosed with hiatus. Hernia My hematologist arranged the test
I was diagnosed with hiatal hernia is as well. What do you do for it ? I get diagnosed with things and then all the docs push meds with no diet change.
Just a note for anyone who is in treatment, check with your care team before starting OTC meds for reflux. Some can be contraindicated with various treatments.
Hi Sheryl,
Weird isn't it? How could these 2 things be connected. I had the very same complaint when I was first diagnosed. My family doc referred me to an ENT. She prescribed some antacid medication, which I never took. I started being careful about what and when I ate and that seemed to curb the acid reflux events quite a bit. I have since started seeing a very talented osteopath who is working on unblocking my thoracic duct and that is really helping with a multitude of my symptoms, including the acid reflux and feeling of something stuck in my throat.
I have also been able to feel a little something on my tonsil on one side. I first thought I had something, like a bean skin, or pepper granule stuck on that side at the very back of my mouth. Turns out it is a nodule that pops up when the CLL has flared up and then it goes away.
I had something in the back of my throat and was told it was mucous mode by my ent after scope. I didn't believe him so went to specialist in the city and he said same thing. No one said what caused it. They only said it can come and go.
Has anyone tried Betaine HCL with Pepsin available thru health stores? I use Blue Bonnet Brand. I found that taking one capsule with a big meal helps cut the acid reflux and helps metabolize food. I had a total thyroidectomy and am missing my sigmoid colon - both areas that help with metabolism. I was diagnosed with hiatal hernia and GERD a few years back. Will be seeing Gastro doc in a few weeks. I also raise my head at night and stay away from vinagery foods.
Tri-Salts is an OTC powder we order online. Mix 1/4 tsp in a cup of water. Relieves acid reflux fast.
Gastroenterologist is who I saw. I have had horrible acid reflux for years. Thank goodness the Venteclax did not make it worse. It just gave the the occasional ❤️ burn.
Hi i also have reflux.. ..terrible
I need to take a pill before dinner snd before bed
A couple of things might help...dont eat anything after 6pm.....elevate head of bed (some people use bricks underthe bed)..I use pillows and fall asleep sitting up.....and you probably know the triggers...mine are garlic..onion...green peppers.....all the good things lol
Let me know if this helps.Blessings Bev
I'm on 2 x 30mg of lansoprazole a day but I try to only take one. I didn't have any heart burn but had a sore throat that got worse from mid afternoon, hoarseness and dreadful coughing. It really hurt my ear when I swallowed at night. My nose ran a lot too. I was supposed to have an endoscopy which I need to rebook. When I mentioned the gastroenterologist thought it might be cll related to the haematologist, there was no comment made. I've been breathless and coughing for ages, I'd no idea this could be caused by LPR/silent reflux. I'd only every heard of heartburn before.
I had this badly for 18 months. I saw an ENT but no problems there followed by gastroenterologist. Diagnosed with oesophagitis, 2 months of treatment did the trick no cough now and oesophagus back to normal. I would go with gastroenterologist first if I were you.
Good luck
Ann
I’ve seen a Gastroenterologist the other day and she recommended staying on Omeprazole for a few more weeks. Because it takes about a month or so to go away. I also saw an ENT today and she said the vocal cords and throat looked ok. The inflamed Lingual tonsils and adenoids are CLL related. So she gave me a nasal spray to help with the post nasal drip. Time will tell.
Thanks for all your help and have a great weekend!
Sheryl 😃
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