Acrocyanosis, CLL and CAD

hI,

some time ago my husband was diagnosed with CLL then changed to SLL, as well as CAD. He underwent steroid treatment with unpleasant side effects but no result. while being treated he suffered from a bad case of infection of the urinary tract and had to be hospitalised, he developed a blood clot in his leg, his muscles and tendons of his back weakened from all the bed stays and too much sitting during steroid therapy, so his back went and he now needs regular physiotherapy treatment. The theory of the treating hematologist that in summer with hot temperatures he would feel better and his blood results would improve did not work out. although we now have hot weather and temperatures over +30 he developed acrocyanosis, his nose is turning blue now when he is a bit cold. Just wondering if there are people out there with similar experiences.

7 Replies

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  • I had SLL then CLL. I started treatment two weeks ago on imbruvica and doing well so far. Have You seen a CLL specialist?

  • Was he taking Cipro or Levequin for the infection? Both can cause tendon damage. It sounds like he needs a doctor more familiar with CLL.

  • Is that ciprofloxacin? Bit worried as I was started on a course of that for a chest problem that started while I was in hospital in December (I had a heart attack).

  • Yes. Too many doctors seem to not take the black box warnings seriously. There are several posts about it here.

  • Thanks - will search.

  • Hi Ewuraja,

    The combination of cold agglutinin disease and CLL/SLL is uncommon but reported in the literature. I found this short but full paper among the more interesting on the topic and you might find it helpful. Because of the rarity of this combination it is all the more important that your husband be seen at the very least for a consultation by a CLL specialist preferably one with a background in immunology.

    onlinelibrary.wiley.com/doi...

    It is rather suspicious that your husband would be diagnosed with CLL and have it changed to SLL. Both labels are the same cancer but in different compartments of tissue. CLL is the leukemic expression in blood and SLL is the lymphoma expression in lymph tissue of the same identical cells. SLL might be "added" to the overall description of his condition but if he was diagnosed at first as CLL the cancer cells are presumed to have been found in the blood. CLL/SLL are commonly found together.

    Hope this helps.

    WWW

  • I was told that CLL and SLL are really the same thing.

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