Saturday we had appointment with doc. Biggiest lymp node is around in 13.5cm in abdomen, so doctor told to start Acalabrutinib. He is TP53 positive and IGVH unmutated. But strange is that his WBC is reduced to 7830 from 14380 in 3 months and absolute count of lymphocytes is reduced to 3633 from 6916 (This we are not understanding, we expected lymphocytes count will be too high). Any input on this.
Any precaution or food to add/remove/any suggestion will be highly appreciated.
Need best wishes
Regards,
pbaddi
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pbaddi
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There's a dynamic interchange between CLL cells in the nodes and blood. BTK inhibitors move them from the nodes to the blood, but recently it was discovered that cannabinoids can do the opposite - encourage the movement of CLL cells into the nodes. There are probably other things that can influence where our CLL cells prefer to accumulate too.
Also, subclonal evolution results in new clones becoming dominant. It's possible that a dominant clone has developed which prefers to congregate in the nodes. TP53 mutated CLL is less stable (TP53 is known as the guardian of the genome), so that may be more likely to be the case. The low absolute lymphocyte count (ALC) is fairly low for someone starting treatment, so perhaps this is more of an SLL than CLL presentation.
Probably none of the above apply anyway. I don't know what lymphocyte count history you have, but they can jump around a fair amount when they are as low as this. That's why specialists don't get particularly concerned while they are under 30(,000).
Acalabrutinib should work very well - don't be surprised when the ALC jumps up considerably as any large nodes melt away.
Note that worrying it can give the appearance of working (lowering the absolute lymphocyte count), while actually providing better conditions for the CLL cell to grow (a nurturing environment in lymph nodes).
I had shared the paper with my doctor and he said he believes it’s fine to use in moderation to help with side effects (nausea and headaches). It’s really confusing as everyone seems to have a different view on this 🤷🏻
thanks, Neil, for being such a wonderful resource! I know many people that have had a much better experience than they did with pharmaceuticals. That’s why I was curious.
Nausea and pain were considered to be the two areas where cannabinoids might have some value specific to CLL symptoms, once you stripped all the hype away. Seems that even here, good evidence is lacking. I suspect that the placebo effect is a major factor in pain and possibly nausea improvement We are all different, particularly in how we respond to pain and nausea drugs, but given the research showing cannabinoids may encourage CLL cells to move into the nodes where they grow, I consider it would be wise to only try cannabinoids for CLL when everything else has failed - and then only on a temporary basis.
Hi, my story is similar to yours although my lymph nodes were more enlarged in my neck and groin with Lymphocyte count at 5.5 increasing to 7.4, treatment started early this year on Acalabrutinib + 3L of water a day for the first week because my Lymph nodes were nearly 10cm in my neck (3 off them) and the one in my right groin about 8cm long but the shape of an egg so about 2.5cm across or diameter as well as others all over my body which showed on the scan but not so large. I also have 2 mutated ATM and DLEU which can mean poor response to certain treatments and earlier relapse from treatment. I am considered to be SLL (which is the same as CLL but shows in a different way i.e. the nodes and not so much in the blood) However after starting treatment the node size started to reduce after just 2 weeks and after the first 4 weeks they were going down even further. I then got covid and had to stop for 6 weeks and the size of the nodes started to increase again. However having been back on Acalabrutinib now and and due my 6th cycle on Thursday. My Hematologist consultant is very pleased with my progress after just 7 months with the nodes in my neck and groin etc. now close to normal size. The lymphocyte counts did go up as explained in Aussie Neil's explanation but are now reducing towards normal level so hopefully after a year I may only have to see my consultant every 3 months not every month. As regards food, healthy eating is best and I guess you should already have been told not to eat Grapefruit or Servile oranges and don't take any other strong drugs without talking your consultant first, I have been told not to take Ibuprofen or anything similar.
This is my experience so far with similar condition to you I believe. I am 62 still active and keep fit a couple of time a week.
Good luck and I hope your condition continues to improve
Hi , no I have no side effects apart from a few headaches at the start (1 week) but coffee sorted that. I lost weight after being diagnosed but that was a year before starting treatment due to worry before I fully understood the condition. However eating healthily has made me lose a few pound which is good in that respect .Will
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