My OH has just had 4-monthly blood tests, which show no increase at all in lymphocytes, in fact down at 31.8, almost lowest ever; unfortunately platelets are also down 81 from 126 in spring, so a worrying drop. His figures are usually better in spring, as we live at 1800m for 4 months, so the altitude helps.
The haemotologist is now talking about starting treatment - OH has been on W&W for 2 years since diagnosis. Am a bit confused, as there has been no increase in lymphocytes, and everything else seems to be burbling along at the same level.
He has another blood test due and, for the next 10 days before it, he's cutting out all alcohol (a regular but not huge drinker); generally we have a good diet anyway; we're a bit shell-shocked, as had hoped he'd stay on W&W for a few years to come - he's aged 56, full-time ski instructor, and we run a B&B through the summer, so a busy, active life. Other than going to bed a bit earlier, he's showing no real symptoms at the moment, just wondering if haematologist is being a bit hasty?
We live in France, but am trying to organise a visit to a UK specialist on our next trip to UK, just for a bit of reassurance really.
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The CLL Guideline set a mark for platelets at 100, this usually triggers a pretreatment discussion and closer following... how enlarged is his spleen?... it can trap platelets...
At the moment, no change to spleen or any other gland sizes, the only major change has been the platelet count. To be honest, am not certain What tests have been done, although I know the FSH test for genetics is on the current script, and last results showed 'thrombocytopenia' under the figures. Not sure what ITP is. No none marrow biopsy in the pipeline at the moment.
Am hoping to organise a consultation with a CLL specialist in Toulouse quite soon. At the moment, next visit to local haematologist is early November, so hopefully picture will be clearer by then.
OH is v accepting of what he's being told, it's me who is questioning - I'm the one that reads this site and tries to find info, he is still very much head in the sand. And I'm scared.
Thanks so much. We have already been in touch with another doctor at the same hospital, who is a CLL specialist - I need to send off a whole load of blood results and then wait and see what he says. No urgency at the moment, apparently.
Also, we noticed that after last winter, the platelet count was the highest ever (125, where it was usually around 110) and, other then being at altitude, which may have some bearing, the only main difference is that last winter, he took a VitC supplement every day, but didn't bother once we got home. So back on the VitC, plus alcohol consumption down to 1 small glass of something decent (we live in a vineyard area, it's almost obligatory!) - hoping to see an improvement - next blood test due in 10 days, so we shall see.
The relevance of winter is that we are ski instructors, so for 4-5 months per year, we live at 1800m (6000ft), and this certainly has an effect on blood readings and pressures - usually for the better.
One difference I note is in Nick's attitude - I think his head is slowly coming out of the sand, rather than pretending there's nothing going on, which for me makes it all a bit easier to deal with.
Is your OH's haematologist talking specific dates for starting treatment or just mentioning that it may be needed soon?
One of the triggers for starting treatment is platelets dropping below 100, but more experienced specialists are likely to allow greater latitude. Prof Terry Hamblin used 70 as a trigger for starting treatment for example. It really depends on the individual patient and how fast the CLL is progressing in the bone marrow (which may be different from nodal growth) and what other factors (if any) may be causing the drop in platelet levels. Different foods and drugs can influence platelet count and there can be considerable differences between test laboratories. Also the way platelets can clump can make automated counting less accurate than a manual count.
It is important not to let the platelet count get too low before starting treatment, because you need to allow for a further drop caused by treatment. Platelet transfusions last at most around a week, so are best avoided by starting treatment the appropriate time. You also mention a seasonal variation. I tend to have that with some of my blood test results too - so it's worth mentioning it to the specialist, as that may buy your OH some time for a recovery. (My platelets dropped into the low 80's during IV antibiotic treatment two years ago and have been bouncing between the mid 80's and low 120's since then.)
It's definitely worth seeking a second opinion, but don't try and defer treatment too long if your OH's platelets continue to drop.
Thanks, am hoping to organise a consultation with a CLL specialist in Toulouse, see what he has to say. No specific date mentioned, just that it is something we should be thinking about - various other tests to be done, including the genetic one, next appointment is early November, but no CT scan or bone marrow biopsy as yet.
He seems very accepting of whatever the haematologist says, it's me who is questioning things - which is usual with us, I'm the nosy, inquisitive one. But am finding this all quite scary.
follow up to my post in the autumn - we saw Dr Franceso Forconi in Southampton, who was wonderfully reassuring - looking at the bigger picture than the local French haematologist, basically nothing much has really changed in 2 years, try not to focus too much on the platelets figure as everything else is stable. OH is now being included in a clinical trial they're running, he's young and fit, take a deep breath and review things in the spring. So quite a relief for the moment.
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