too short of w & w

I will try and keep this short but need some advice on talking to our doctor. My husband Brett finished FCR 15 months ago, 6 months ago his BMB showed all clear now ending the happy story. About 5 months ago he had a swollen lymph node in his neck. Dr confirmed that yes he thought the CLL was active though blood counts were all really good. He started coughing about 4 months ago and had 3 antibiotics through his GP thinking it was a virus he couldn't get rid of. Late January random blood test while getting his port flushed, lymphocytes and wbc still below normal but HGB down to 12.84 when he has always maintained at 15+. No alarms yet. About 3 days before his 3 month oncology check up (2/23) he became sick with chills, rash, diarrhea and btw no appetite for a few weeks. Counts on 2/23 were WBC 3.11; LYMPH .21 (he previously had a steroid to help with his cough) HGB 10.2 Originally thought it was CLL then reviewing symptoms counts thought infection or his LYMPH # would be higher. Blood tests found no infection, CT of liver found nodules on liver, preliminary results of liver biopsy have them back to CLL concentrated in bone marrow this time. Full results tomorrow, BMB also scheduled for tomorrow, ready to start second treatment when those results come back. My confusion comes from low LYMPH # and how can this be the CLL? didn't really get an answer on phone with dr yesterday. Does this sound possible to anyone? What questions should we be asking our hematologist? Scared to death tomorrow they say liver cancer. Also Monday his HGB was down to 8. How low can it go? They will check it again tomorrow :( I could use any words of wisdom right now. Thanks for all your support, Jules

10 Replies

oldestnewest
  • Hi Jules,

    I'm so sorry that you and your husband are going through these worries.

    I have no words of wisdom, but want you to know I'm thinking of you both and hope you receive the answers you need.

  • Hi Jules,

    Sorry to hear that you and your husband are going through a worrying time right now. Having a bone marrow biopsy is what's needed right now to see what's behind his falling haemoglobin. While it is most likely that your husband's drop in haemoglobin counts are due to CLL again infiltrating his bone marrow, it can also be due to an auto-immune complication that can occur with CLL called AIHA (Auto-Immune Haemolytic Anaemia), or to a swollen spleen, (but that's easily checked). Don't be surprised that there's no sign of CLL in the blood; the SLL form which a few of us on this site have typically doesn't appear in the blood and a node biopsy is needed to detect it.

    CLL cells can congregate in the liver - it's reasonably common. Also benign nodules are quite often found on liver scans - and that's in people without CLL. Your husband's medical team obviously suspect that CLL is behind the liver nodules (or they are benign) - hence the bone marrow biopsy.

    Please keep us informed,

    Neil

  • Thank you so much, that has helped me alot, I have Richters written all over this and it will help me sleep tonight with a hope that it might not be. They are also doing a PET scan tomorrow so hopefully we start to get some answers.

  • A PET scan will rule out Richter's but your husband's symptoms don't seem to match what I would expect. Cllcanada has survived Richter's and can advise you and your husband better.

  • Sorry I'm late to this... I just missed it... do you know Brett's LDH levels? beta2 microgobilin?

    I think a PET scan is prudent, but it doesn't sound like a transformation to me... they ususally have a lot of B symptoms, rapidly enlarging nodes, malaise, night sweats, weight loss, etc... but I had none of it... which makes it all iffy... my LDH was high normal , but my absolute lymphocyte count [ALC] went up like a rocket... 🚀🚀🚀

    I recently had my Hgb drop below 8... and it was extremely hard to function.. the short trip to the bathroom became Mount Everest... they wanted to start transfusions, but by luck, I was able to start idelalisib and rituxan, and 12 weeks later I'm fine...

    Please let us know the test results...not knowing is simply the worst....

    ~chris

  • 2 weeks ago his LDH level was perfectly in normal range. I don't know about the other beta or micro, all that is at my office. But it doesn't seem to me they were out of wack. I have been studying his counts, what else would I do in my spare time? :) thank you so much!

  • 🙏🏻 Saying a prayer right now. Stay positive.

  • This has been a rollercoaster, after getting the BMB results and PET scan results back Brett's oncologist says this is not a reoccurrence of his CLL or any type cancer, back to must be an infection. So lots of blood drawn today for our Tuesday appointment with an infectious disease specialist. I would like to jump for joy that it is not CLL but he is so sick until he is better, no way am I happy about anything. Yesterday they gave him a transfusion because his HGB was down to 6.8. All of his blood counts are way out of wack, low. I don't even want to know anymore. Bilirubin is high however, starting to look jaundice :( He is still tired and weak, we are just trying to hang in there.

  • Oh Jules, I'm so sorry you didn't get any answers today. Please know I'm thinking of you and your husband, and so hoping he will start feeling better soon.

  • Hi Jules

    You must be worried sick. I hope they get to the bottom of it soon.

    Keep us posted

    Maria xx

You may also like...