Weird question but ... the original way I was diagnosed with CLL was because I was having some very strange “heart burn” type of symptoms. And my doctor did a range of test - thyroid, barium swallow & a CBC - everything came back ok except a small amount of acid reflux in the barium swallow & my WCC which then made me have to travel down this road. The doctors put me on Prilosec for the acid and we are now dealing with a CLL specialist for this. But my question is has anyone had heartburn type of symptoms relating to CLL — it feels as if gas is trapped in my throat and nothing else? It comes and goes & Prilosec doesn’t seem to make much difference. My CLL doctor checked for swollen nodes and spleen and I was clear for that. I just find it so odd that this “lump in my throat feeling” came on at the time I found out I had CLL — just trying to figure it all out - sorry for the off-the-wall-question.
“CLL & Heartburn” ??: Weird question but ... the... - CLL Support
“CLL & Heartburn” ??
Hello i don't know if In my case it was related but before i got diagnosed with cll i was getting the most terrible heart burn i ever felt. I suspected something else was going on.
I was diagnosed with sll five years ago. I had a lump in my throat feeling for the first couple of months after diagnosis (I was on watch and wait for five years). My oncology nurse said it was a symptom of anxiety due to the diagnosis and that it would disappear after a couple of months. She was right.
I am now on a clinical trial and am taking acalabrutinib. After two weeks on the drug I started experiencing bad heartburn. I am doing all of the right things in terms of lifestyle changes (no coffee, tea, alcohol, etc) and I am hoping that it will decide to go as quickly as it came. I am taking Zantac in the meantime.
Take care.
Cindy
I guess I Figured it wasn’t stress since this feeling came before my diagnosis ... kind of how we found out about CLL - but I may talk to the doctor about switching meds to see if something works better - thanks so much for responding
Meamiaam, has anyone mentioned your going to see a Gastroenterologist for this complaint? You may have some esophageal inflammation. A Gastro can do a more definitive, specific test.
They have done a barium swallow and X-ray to check my throat - esophagus & lungs even & only found acid reflux .. I’ll ask more questions maybe & see if maybe I could be sent for more testing ??!! Thanks again!
Yes, ask. The tests the gastro can do will look inside the esophagus, if it is deemed to be needed--you want to ask that the tests done so far be forwarded to the gastro also.
Best wishes for getting this sorted and hopefully gone.
Not everything is CLL related. See a gastro doc to eliminate conditions. I had slight case of acid reflux but it popped up many years before CLL. Mine was not related. 💕
Thanks! They have done a barium swallow and X-ray to check my throat - esophagus & lungs even & only found acid reflux .. I’ll ask more questions maybe — thanks!!
It’s weird reading this because it’s so similar to my situation. I did a barium swallow just a month or so ago. I was diagnosed with CLL just before and I was only diagnosed because odd heartburn swallowing issues and some type of heart arrhythmia type sensation.
I have had increased reflux since I started ibrutinib. I have just had an endoscopy and been diagnosed with inflammation of the oesophagus which may or may not be ibrutinib related.
I have used omeprozole in the past and it did not help. However, esomeorozole worked for me. I am now on a treatment dose to help my osophogus recover and presumable will need a preventative dose once treatment is complete.
Not everything we experience is CLL related. It is very difficult to distinguish between CLL related symptoms and others on occasion. This is why I would agree with what others have told you that a gastric investigation would help you.
Anxiety, reflux or both can be the cause of the throat symptoms you describe.
If it’s anxiety you can seek support for this from your GP, this community or both.
If it is reflux it may help to look at alternative medications that may be more suitable for you.
Good luck
Ann
Thanks! They have done a barium swallow and X-ray to check my throat - esophagus & lungs even & only found acid reflux .. I’ll ask more questions maybe — thanks — I may also ask my Dr about the other medication to see if that works any better. Thanks so much for the idea.
Hi
Not sure if this is related I have been in ibrutinib 2.5 years and probably for around 2 years I have experienced acid reflux which is not vsdvso I ignore it but one thing I have noticed is with certain foods especially wholemeal bread it can hurt when I swallow sometimes feel like I will choke so I have to chew very carefully but it's only with certain foods as I have said other foods go down no problem I suspect it's ibrutinib related but the drug is working well so I don't mind having these kings of side effects although maybe I will now get this checked out and tell my consultant
Hi I agree ibrutinib is a wonderful drug it is doing wonders for me. It’s always worth getting reflux problems checked out before they become too problematic. They or may not be ibrutinib related. Whatever I hopefully will be on it for many years to come.
Good luck
Ann
Hi
Not crazy question....I have had acid alot but since diagnosis of SLL I have had this feeling of a lump in my throat when I swallow ever since diagnosis in July of this year......weird
Many years before my Cll dx I was dx'd with GERD. For me swallowing sx's and the lump in my throat sx's were more prominent than severe heartburn or reflux. I also had esophageal spasms. An endoscopy identified inflammation at the base of the esophagus. Prilosec allowed the irritation to heal and the sx's remitted. I was treated by a gastroenterologist. I took omeprazole , the generic of prilosec, for yrs before weaning myself off it. Please be advised it is now known there are multiple risks in long term use of proton pump inhibitors like prilosec. The advice now is to get off them as soon as possible, and make the dietary and lifestyle changes recommended to control GERD. There is plenty of good advice online on this topic. Use good, reliable sources for info. An up-to-date gastroenterologist should be aware of all of this.
My acid reflux due to an esophagus problem had been misdiagnosed as uncontrolled asthma for years. I did not present with the typical heartburn. I did the barium drink as well as loads of testing. In the end, my esophagus flap was nearly burned away from acid pooling in one area of my throat. This also affected my vocal chords and changed my voice. My CLL specialist had ordered a full scan to make certain that, albeit very, very rare, a nerve that runs from your stomach to your throat does not have infiltration. I had a scan a year ago that showed enlarged lymph nodes in my stomach. She was making sure there is no correlation. I am awaiting the results.
Bottom line is ALWAYS check it out. While most things are completely non related to CLL, it is still important to run these symptoms by your CLL specialist and let them make that determination.
Best,
Sandy
No matter what ....I do not eat late at night. I cut off eating by 6 pm. I avoid red sauce. Eating an apple or two a day really helped me. Something about the fiber and juices in the apple.
Do not lay head completely flat at night.
If you have a large abdomen, lose weight. All that adipose can push stomach contents up into the esophagus.
I personally like Zantac, as needed as it acts fast. I also use Gaviscon if acid gets in my mouth in the middle of the night I take a swig of a Gaviscon mint flavored. Works in a couple of minutes so I can sleep.
I don’t like omeprazole or Prilosec. Too strong and comes back worse if you discontinue it, in my opinion.
I had almost the exact same situation happen to me. I was just diagnosed and actually had an esophageal scope and was put on Prilosec within a month or so of my CLL diagnosis. Did you also have something like heart palpitations and a strange sensation in the center of you chest? Also, I had my Lymphocyte numbers spike dramatically while on 40mg of Omeprazole, Prilosec, did you have any jump in numbers? It’s odd because I had CBC panels going back to 2014 and I can see they were first elevated but in 2016 and relatively stable thru 2018 and 2021. Then they jumped 23% within like 2 months.
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