Gustatory sweating / hyperhidrosis... not at night, but "drenching" sweats when he eats?

leiker_shop
leiker_shop Member Posts: 10 Member
edited February 2022 in Lymphoma (Hodgkin and Non-Hodgkin) #1

We're at MD Anderson right now for tests for my husband Dave, and it was suggested we seek support from other NHL people. There's so much to learn and we hope to be able to give and receive anecdotal info with others over the coming months and years.

Dave turns 62 in May. He is very fit (former firefighter, swims a mile every few days), eats extremely healthy, and generally is in a good position to tackle this (we hope!). That said, his first symptoms were unexplained weight loss over the last year, and then the last 3-6 months he's been steadily increasing in what he calls "head sweats"(!).

It happens when he eats... well, pretty much anything, but only on his scalp. He doesn't really sweat at night, but these episodes (which can happen immediately or up to an hour later, and occasionally randomly during the day) could be considered "drenching," perhaps. He doesn't feel flushed, doesn't get red, doesn't have a fever or otherwise feel strange. It all just seemed so random but distressing to him, which--between that and the weight loss--is what led us to push into finding some answers via CT and then PET-CT scans.

Does/did anyone else experience unusual sweating like this, in the absence of diabetes or some other condition? He's been tested six ways to Sunday for various allergies, mast cell disorders, IgG-related disease.

We just want to hear if this has happened to anyone else! It doesn't show up in the literature outside of parotid gland cancers/injuries or something like that. His PET-CT was clear for salivary gland activity; the farthest north enlarged/avid node was in one armpit.

Anyone?

Looking forward to getting to know you.

Jenn+Dave

Comments

  • po18guy
    po18guy Member Posts: 1,508 Member
    #2

    Sorry to hear this. I suppose that with immune system cancers, almost any symptom may be present. But, there is a large overlap of sub-types within a given symptom. If he has a lymphoma diagnosis, it can be crucial to nail the sub-type down with certainty, as treatments vary between many of them. The symptoms he is experiencing certainly "seem" to be immune system related, but a pathology report will determine that with certainty.

  • leiker_shop
    leiker_shop Member Posts: 10 Member
    #3

    Thanks so much for responding! He had his retroperitoneal CT-guided biopsy this morning, so hopefully we'll receive some results soon. We came here specifically for the biopsy,having read how important it was to get the subtype right. Our money is on follicular lymphoma based on age, symptoms, several zones involved but low grade FDG uptake, etc... but with the hope it's not something transforming. (I actually went back through his records and discovered a sidenote on a 2015 MRI for his back pain that noted an enlarged left paraaortic node... it was never mentioned or followed up on!)

    It's Tuesday today and our oncology follow-up was moved up to Friday, with the caveat that results may not be ready/complete by then. We were hoping to be able to get back to Saudi Arabia (expats there for 12 yrs) by 23th for work. We arrived here in Houston on Feb 7th, giving them 10 business days (because we were told to allot 3-5!) for diagnostics, but things aren't moving as quickly as we'd anticipated. We were also wondering if he needed a bone marrow biopsy (he has mild pancytopenia), thinking maybe that could be done at the same time as this core needle tissue one, but apparently it doesn't work that way...?

    I have sooooo many questions. I know that I get way ahead of myself, because I happen to love reading new studies and scientific papers. I know that's irritating to doctors, but it calms me (AND my husband) to look stuff up, toss it around, discuss possibilities. Eventually we will settle into whatever works and move on, but for now we are digging in. It's not easy to feel like doctors don't have time for your questions. :(

    Anyway, thanks for listening and for giving so much of your time on the forums. I'd read some of your comments and posts, so am glad to "meet" you. I'm Jenn and my husband is Dave. I'm Canadian with a green card and Dave's a native Coloradoan, but we've bought a place up in Northern Alberta for retirement this May. Ironic timing, that. :)

  • po18guy
    po18guy Member Posts: 1,508 Member
    #4

    If you find that the hematologist is irritated at questions, I would seek another doctor - and quickly. Poor communications, disinterest or even arrogance has lead to all manner of medical malpractice. I was very blessed that my hematologist invited questions, as he wanted his patients to be actively involved in their health.

  • leiker_shop
    leiker_shop Member Posts: 10 Member
    #5

    This next/second appointment with him will be very telling. I think he was taken very off guard because we showed up without ANY diagnosis/biopsy but pushed to be seen by the lymphoma department versus just regular "suspicion of cancer" clinic, based off of last month's CT and PET-CT conclusions of "differential diagnosis of lymphoma" and about 23, 872 hours online decoding the scans and labs. 😉 So I had a binder of material with me for the initial appointment but felt too flustered and overwhelmed to really communicate well. He basically said "we can't know anything, if it's even lymphoma, until the biopsy"... and then put "follicular lymphoma grade I" on the diagnosis line after reading the scans, to order the biopsy/bloodwork.

    We figure Dave will be treated either in Canada (Calgary) or in Denver (UC Anschutz?), so we will likely tease out treatment recommendations from this guy, and then get a second opinion and go ahead at one of those places. I don't think we will want or need to come back to Houston after this, so maybe the haemotologist is a self-correcting problem. We do have faith in their whole cancer-diagnosing machine-at-work here. It's the patience that's hard! ;)

  • po18guy
    po18guy Member Posts: 1,508 Member
    #6

    Are you at MD Anderson? If so, that is a National Cancer Institute designated comprehensive cancer center (a mouth full!). There are other such centers across the US.

    https://www.cancer.gov/research/infrastructure/cancer-centers/find

    My point is to never fear offending a doctor. It is your life! That, and that second opinions save lives. Treatment of any given lymphoma might also be slightly different at different facilities, depending on their data set and managerial philosophy.

  • leiker_shop
    leiker_shop Member Posts: 10 Member
    #7

    Thanks! Yes, we will definitely get a second opinion, most likely at the Denver NCI centre (where Dave's family is based)... and a third possibly up in Calgary (which would be nearest to where we'll live, come retirement this May 31). I agree with you that it's best not to worry about offending doctors--but it's funny how such a vulnerable position makes you second-guess yourself where you normally wouldn't hesitate! What a ride this is.

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