Wife of sufferer

My Husband was diagnosed almost 2 years ago at the age of 71, as with others it was picked up in his annual MOT and came as a shock! our first appointment was at the local hospital McMillan centre and a very nice doctor briefly outlined what CLL was and we were also told its a good cancer to get........how can any be good!! It was decided that future appointments would be in the haematology out patient clinic on 4 monthly watch and wait. At the second visit it was decided my husband was anxious and Citalopram anti depressant was perscribed which he is still on and has been increased from 10-40mg no explanation given, one visit earlier this year seemed more like a phsyciatric session than CLL , anyone had a similar experience? He is still on 4 monthly W&W and last time his wbc was down from 60 to 50 but the lymph nodes in the armpit are quite large and the latest doctor said if she was a betting person then he will need treatment at some stage!, we always seem to leave hospital none the wiser as to what is going on despite (we think) asking the right questions.

On the question of travel insurance I was shocked at the quotes given last year and my husband travelled without CLL being covered, having ok'd it with the hospital who said unsurance companies just see or hear the word Leukaemia.

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  • On the insurance front I have used allcleartravel.co.uk on the last two occasions. once to New Zealand and then Spain.

    Dont be afraid to push for an answer when at the hospital and remember WHY and WHEN? are the two main questions. It is not always easy to answer but they should say if that is the case. Good Luck

  • I know what you mean my first consultant always had one eye on me and one on the clock his attitude was that it was no big deal, Cancer no big deal! my new consultant is much better ( the old one retired) and we find out a bit more on my 6 monthly visist's.

    I go to France quite a bit and use free spirit and it seeems pretty good freespirittravelinsurance.com/

    Best wishes

    Julian

  • As for antidepressants I highly recommend working with a psychiatrist who is familiar with the pharmacology of the available drugs. I was lucky enough to be referred to one who specializes in pharmacology. It took trying a few different ones and different doses to find the right one for me. It takes a partnership with your doctor, as you need to stay on each thing you try long enough for it to be in your system. General practitioners and oncologists tend to prescribe whatever is popular at the moment. Been there done that with no help and negative side effects. If what your husband is taking is not helping, especially with the increase in dose or if he is having trouble with side effects, I would recommend seeing someone who deals with this all the time.

  • I suspect that consultants who you haven't met before are a bit guarded about how much to tell you. I understand some patients prefer to know as little as possible. If I can't see the screen and results page, I ask if I can see it and ask what things mean. I have always had a positive response and a careful explanation. Our clinic always runs late because the consultants do take their time, and this is fine. Don't worry about the "possible treatment" comment. I have been told that every visit for over two years. I expect it is a commonplace in case treatment becomes necessary at some time.

  • Just a suggestion [one which I used]

    You can always make an appointment to see the Specialist Nurse [who you should have been given the details of at time of diagnosis] who works alongside your Consultant. I found the meeting extremely benificial as she not only answered all my questions in full, [2 A4 sides of questions!!!!] but anything she was unsure about, she spoke to the Consultant and got back to me quickly.

    Ideally, this should be been done in the Clinic setting with your Consultant, but as you have left the Hospital feeling none the wiser, I hope this just gives you both another option to explore and give you some of the answers and reassurance.

    Wishing you both well,

    Jo

  • Have your husband's B12 and B9 levels checked, they can be depleted and lead to problems like anemia and depression. This was certainly my case. CLL tends to mask some of this. Ask your GP.

    On the white blood cell count (WBC) counts, thy will bounce around 10k and mean little. You should be tracking the absolute lymphocyte count (ALC), which indicates CLL progression with more accuracy.

    Finally record your consultations, with your doctor's permission. It is very easy to miss important facts and this leads to confusion. With a audio recording you can replay the conversation. Recording devices are widely available and cheap. Ask questions get the answers you need.

    CLL CANADA cllcanada.ca

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