possible secondary diagnosis?

[Beefcakesgirl]

Hi all,

Been a long time since ive logged in. Bf has been NED for almost 3yrs!! And he stopped taking imbruvica for the last 2 yrs or so. …Back in December he started complaining of a plugged ear and massive acid reflux. Being as stubborn as he is, it took awhile to get him to a Dr so he’s had about 5 months of incredible acid damaging his throat and such. We are scheduled to get swallow studies, endoscopy and just met with ENT. She believes that he may have lymphoma in his adenoid area. We have not biopsied anything. But she’s resistant to believe what she is seeing may be caused by his uncontrolled acid reflux.

He is in a tailspin. Filling with dread more n more every day. Anyways, I write all of this to ask if anyone had any experience with secondary cancers popping up with CLL? Lymphoma in particular. I’ll have more exact details after we hear back from the oncologist. I just wanted to get the conversation started in hopes I can find something to calm his fears while we wait.

Thanks for being my shoulder. 💜

[AussieNeil Partner Administrator]

While there is a higher incidence of secondary primary cancers with CLL, most often skin cancers, CLL is also the most often diagnosed adult blood cancer, Non-Hodgkin's Lymphoma. Your BF has been fortunate enough to have achieved a good lengthed 2 year holiday from ibrutinib. Our throat is ringed with lymphoid tissue known as Waldeyer's tonsillar ring, which includes our adenoids and much more; so it's most likely just his CLL returning.

Neil

[Beefcakesgirl in reply to AussieNeil]

Do you think simply returning to his imbruvica protocol will control this “outbreak” and keep it at bay?

I know it’s impossible to say. Just asking out of waiting and wondering 🫤

[AussieNeil Partner Administrator in reply to Beefcakesgirl]

Certainly, in this case, your BF should be able to recommence on Imbruvica and see the lympoid tissue in his throat shrink, if it's just his CLL returning. I see from a past post he tolerated Imbruvica very well and stopped taking it simply because his CLL was well under control, so he shouldn't have developed resistance to it. Imbruvica in the USA is one of the 10 drugs for which the US federal government has negotiated a significant price reduction, but that doesn't kick in until 2025 I think. Nowadays we also have acalabrutinib and zanubrutinib approved, which have a better side effect and adverse event profile, which importantly includes cardiovascular risks. The costs of those of course, will depend on his medical insurance.

I'm pleased that you have been encouraging your BF to get his acid reflux managed, as not doing so does put him at risk of developing oesophageal cancer. It's also a very unpleasant condition to live with.

Neil

[Spark_Plug]

Esophageal cancer if caught in time can be surgically remedied, acid reflux may lead to this any doubts should be followed through completely. Left to it's own it can be pronounced irreversible.