I have just had, in November, my consultation with haematologist to check bloods. I am on watch and wait. All looks stable. The key markers were:
Hb 136, white cells 14.9, platelets 253, neutrophils 3, lymphocytes 11.3, creatine 59, CRP less than 1, LDH 215, immunoglobulins normal.
(The units are appropriate to the UK)
I suggested we do all this again in 1 year and my consultant agreed. (I am on the OxPLoredD trial and they will see me in six months from now)
I remain hopeful that I may be in the 30% of CLL patients who never need to be treated. ( The point of the Oxford trial is to try and identify which CLL patients need treatment.)
Any comments on my numbers appreciated.
Any tips on insurance for travel abroad also appreciated.
( I will come back to the topic in a recent post later)
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Divisidero
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Your numbers look very good and you may go years without treatment. My numbers looked similar to yours at diagnosis and WBC/ALC doubling time took 5 years….so very slow progression. Only reason I had to start treatment (Acalabrutinib) after almost 6 years w&w was chronic neutropenia (0.2-.05). My cll specialist was worried about dangerous infections.
If your IGg and neutrophils remain normal, you might not have to worry about treatment for quite a while
While I live in Canada, I had no problems getting out-of-province travel insurance while on w & w. Not only treatment but my age (75) might now become an issue once the more cautious among us start to travel again “post-COVID”
I seem to be a minority where Acal treatment is much slower to bring results. After 2 years of treatment most of my numbers are just below normal. But my WBC/ALC is still around 12/11. It seems, in my case anyway that these counts are as slow coming down as they were going up.
Not that worried since I still have no symptoms after 8 years and my IGg is maintained at a good level by weekly at home SCIG and the Acalabrutinib has gradually increased my neutrophils to a more manageable 1.25. So, I will continue to take Acalabrutinib until the blood counts start to increase again.
I was just reading your post when you mentioned holiday insurance and hoping that you’re hoping to go to S America. My consultants at Oxford (Uk) say I can’t visit there because you need the yellow fever vaccine and because it’s a live one with CLL you cannot have any live vaccinations. I had a holiday planned for the Amazon on a cruise ship when I was diagnosed and they said no! It had to be cancelled plus my GP also agreed with my consultant. Since then I’ve travelled all over the world to countries that don’t require the yellow fever vaccine and I’ve never had trouble getting a good holiday insurance. Good luck and take care.
Thank you so much for this as I had not thought of it. Yes the vaccination is out of the question. I have been, over ten years ago, in the Amazon region and Manaus and I guess a cruse ship would be really high risk.
I would not be on a 'holiday', and would be in Brasilia where it is usually very dry. As with all these things how does one measure risk? I am informed that recently in Oxford, a 70 year old woman was hit by a cyclist on the river tow path and has since died. It is hard to understand this tragedy.
Thank you for your message - I clearly need to think on this. Good luck with your travel and CLL.
Thank you so much for this reply - 17 years on watch and wait is extraordinary.
I could not agree more with you about exercise - I was always in sports teams but it all becomes more difficult now that I am 74, taking into account the pandemic, and in my case, a recent eye operation and investigation for prostate cancer plus really cold weather means I can not cycle. I have just about managed my 10000 steps a day.
But your message is a clarion call - thank you and I wish you well with your CLL treatment.
Hi. Lovely numbers. On the subject of travel insurance, if you've been diagnosed more than a year (maybe 2 for some companies) and are on watch and wait they are not really concerned but you do need to tell them. If by any chance you had a yellow fever vaccine before diagnosis that's great as one shot is all you need for life. By the way, I'm 14 years since diagnosis with no treatment.
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