Advice Please?

My husband was diagnosed with CLL in August 2011, subsequently he was found to have Lung Cancer and 2012 was spent dealing with surgery and recovery. We had to "choose our battles" so CLL was very much put on the back burner. His last appointment with the Heamatologist was in May and she did not want to see him for another year.good news! Recently he has started to have high temperatures and extreme fatigue. Our GP seems to know less than I do about CLL( and I don't know much )..I asked him if he thought it might be CLL progression but he has no idea..I know that the flue vaccine is not "live" but he does seem to be much worse since he this about 3 weeks ago.. any views?

We have rather adopted the "ostrich" position about CLL..any advice would be very much appreciated..x

7 Replies

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  • Alice,

    I think it would be prudent for your husband to arrange for his GP to get a full blood test - and forward them to your Heamatologist for comment. The "watch and wait" is also your responsibility - currently if my temperature rises to a certain level - I contact the experts. Marty

  • I agree with Marty, Alice, you need to be proactive. I have two cancers as well and have had CLL on the back burner, however it is still there.

    I would forget your GP however, and request a consultation with your hematologist, this week, since he may wish to do special testing, not normally performed with routine blood test, like LDH levels, beta2 microglobulin, immunoglobulins levels etc...

    I also think your husband needs to be seen as soon as possible, to sort this out. You want to stress that he is having a problem with his temperature etc. to the hematologist, they are usually pretty good at opening up appointments in those circumstances, I have never waited more than a few days, in similar situations.

    Let us know how you make out...

    ~chris

  • I think that you should certainly phone your haematology dept. and just tell them exactly what you have posted on here.

    It was made clear to me that I could contact the haematology dept. if I thought that I might be having any problems at any time between hospital appointments.

    - Stevie

  • Thank you all so much for all the good advice. I will do as suggested and get him an appointment with his Hematologist. I will let you know what happens. I must admit that it is so helpful to "speak" to people on this site who are dealing with CLL...I will make more use of this resource now that we have our "eye on the ball"...xx

  • Alice,

    I'm very pleased to hear that you are following the good advice given to you above. Your husband's recent symptoms could be from the CLL becoming more aggressive, from a drop in immunity due to the progression of the CLL, from infection(s) that he is having difficulty fighting - again due to the CLL, or due to something entirely unrelated. Whatever the cause, it is very important that this be identified promptly so that the appropriate treatment can be provided and your husband's haematologist is the best first point of contact. Speaking from experience, it is very important to get on top of whatever is causing the fatigue and high temperatures; the longer these continue, the longer will be the eventual recovery.

    Neil

  • The regular readers here will be familiar with this message: CLL affects the immune system, and many childhood diseases can be reactivated. So while these are not directly caused by CLL, CLL does open the door to other infections viral and bacterial. Some of them cause extreme fatigue, some cause high temperatures. The doctors need to test for many possible causes not normally found in adults. CMV, EBV and HHV-6 can be reactivated in immune compromised patients, HHV-6 (Roseola or Sixth's disease) debilitated me in 2012 with severe fatigue and elevated my ALC. Whooping cough got me in 2010.

  • In addition to Len's list, testing for Hepatitis B and C. It is imperative these tests be done prior to any treatment with CD20 monoclonal antibodies, like Rituxan etc.

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