Hi everyone,
after 4 years on W and W my platelet count is now 122 having hovered around normal up til now.
Just wondered if it can go up again( without treatment )? and is it likely i will need treatment soon if it continues to drop.
I have a few lymph nodes in my neck that are a little enlarged, but otherwise feel ok
any advice welcome please
Hey Puppy
I don't know medically if something can make Platelets go up again, but I would imagine you have had up and down cycles with them like I have. Perhaps yours until now have actually stayed in a very narrow range, but mine have fluctuated during readings that have been every three months. I go every six months (on W&W for four and a half years now) for the last two and a half years to the Specialist I want to call the shots at Dana Farber in Boston, but I've continued to see the original Specialist locally in Florida who diagnosed me at the beginning. Thats why I have readings every three months, because I'm purposely seeing two different Specialists.
Anyway my numbers have truly fluctuated a good bit. In the beginning four and a half years ago they ranged between 155 to 198. September 2020 they were as low as 148, and then September 2021 they were 193. The last three readings (remember every three months) they were: 179, 146, 142. So maybe I'm finally in a steady pattern of going down, who knows with the way mine have fluctuated.
I've been meaning to post a question, which you should also look at, with respect to Hemoglobin readings. Like Platelets Hemoglobin readings are something the Specialist will pay very close attention to, with respect to signs to start treatment (which I personally don't wan't to ever start), and my readings with that factor are steadily decreasing.
Hope my input gives you help in figuring out where you are.
Carl
Hi Carl,
thank you for your reply it always great to have people to talk to about the CLL journey and yes your input has been very helpful .This is my first decline in platelet numbers and other bloods are out of reference ranges, but not by very much .
It's strange you think you are on a path that will stay the same and you will never need treatment and then it all changes.
Thanks again for your help and best wishes
puppy
Platelet counts vary up and down considerably in my experience. That's perhaps because they tend to clump and not all necessarily get counted - it's their nature to clump after all. So trends are even more important with platelets than other blood counts.
CLL is so very heterogeneous, it's rather difficult to make predictions, but knowing things like the results of your flow cytometry report at diagnosis can help. (In the US, it's possible to be tested for lots more prognostic markers. In the UK, testing is done before treating, as markers can change over time). For the record, my platelets were at your level seven and a half years before I needed treatment.
I've found a good indicator of when we might be approaching treatment, is when our specialist asks for more frequent blood tests, but I've found that blood test frequency can be reduced again too!
Neil
Hi AussieNeil,
very informative thank you i hadn't thought about the clumping , but now you mention it
it seems obvious.
My last appointment with my local haemotology department was pretty unhelpful.
I was told that if the platelets drop any further i may have chemotherapy which i queried
and asked about targeted therapy which might suit better as a first treatment, but felt I knew more than the junior doctor who turned up over an hour late for my appointment . I was lucky to see a person I guess as no consultants available form haem or oncology .
Am feeling maybe the time has come to find a specialist in London about 40 miles away .
i like to have things explained to me, but I honestly learn more from this forum or CLL society.
sorry am moaning, but feel others seem so informed and I don't have any information about
flow symetry or my status at diagnosis .
They have decided to put me on 6 monthly bloods and a phone call.
Your help is always greatly appreciated as I know you are an administrator
so good to hear from you
thanks
puppy
Hello puppy43,
My husband is 64, CLL diagnosed 2 years ago, w&w, very slow moving numbers, enlarged throat nodes.
His plates have been on a down trend, moving about 9 pts each blood draw. Last visit, specialist casually mentioned keeping a closer eye and discussing treatment (next apot is next week.
Many wonderful friends on this forum have shared their experiences with platelets as far as the purpose for watching re: treatment and having a "buffer" area as far as numbers, how low theirs have gone and they still had procedures done etc.
Well wishes, have a nice weekend!
Cookie~
Hi Cookie341,
thanks for the reply and as you say the people on this forum provide invaluable advice
and it's so good to know they are out there.
I also find that in other parts of the world particularly the USA people are so informed
I find it hard to find out anything and staff shortages in our local nhs hospital are noticable
I don't even have a key nurse anymore as since Covid they have moved on so this forum is my first port of call.
I do wish yourself and your husband well on this journey
Puppy43
Hello puppy43
(As a side note, your user name is so enjoyable to type!)
There have been so many changes in healthcare do to covid. Very sorry to know about your difficulties in that area. I hope these things become addressed and change for the best.
Thank you for your well wishes, much appreciated. I liked the "port of call" reference, it made me say: "we are in the same boat". I wouldn't be able to experience such levity if it weren't for this forum helping my mindset!
Be well~
Cookie
Just agreeing with Neil. I’ve had 72 blood tests since April 2018 (when I started the Venetoclax ramp up). Only 10 have been above 150, the lowest was 55. In the main the numbers have varied between 100 and 130. I keep a much closer eye on my absolute lymphocytes.
Puppy,
I can only relay my experience. In December of 2018 I was diagnosed with CLL, at the time my platelets were under the “normal” band. Less than a year later no more W&W we turned to Chemo to rectify counts. After treatment white counts good, platelets never bounced back. A year after chemo and I’m back on treatments with good white counts and low platelets. So it’s been 4 years of low platelets with either the disease or another treatment responsible for the drop.
I guess the moral here is the meds are likely going to drop your platelets. One can get so mired in the numbers one tends to overlook how they really feel. My only debilitating symptom is the fatigue that comes from low platelets. For me it’s my inability to work 8 hours a day or play more than one round of golf a day…..so I accept and adapt. It’s way too easy to go down the rabbit hole, enjoy what comes your way every day. On day one of treatment; I entered a cancer center with 30 or so people who were in much worse shape than I. With that always central in mind it’s been get up everyday and make the best of it, yes you should be mindful of your numbers just don’t literally live and die by them. That’s my two cents
I had low platelet count several years ago, I started taking papaya leaves tea until the numbers got back to normal. I don’t take it all the time, only when my number goes bellow 200. It seams to work for me…
Within mmm the the first year? of my diagnosis of my very aggressive variant, my platelets dropped to around 100 and hover somewhat there. Generally 80-110 since late 2011. Under treatment, in remission, it doesn't matter, I rarely get about 100 anymore since this diagnosis. I don't have symptoms like oozing cuts, bleeding gums, or nosebleeds so my doc isn't really concerned. It's not so much about the *number*, as if you also are also having symptoms. Someone with bleeding gums, mouth blood blisters and nosebleeds at 110 would get assessed differently. That platelet number generally needs to get much lower until treatment (either CLL or platelets alone) will absolutely be done, as a safety precaution, even if there aren't symptoms.
My platelets have hovered about 130 for many years. My onc/hem never seems concerned about it. My hemoglobin is normal. I've had swollen lymph nodes in my armpit for years. I assume that is from a lotta bee stings (I keep bees). They've gotten steadily smallervas I'm more careful now about getting stung...then I got an immune compromised COVID shot (I guess that's a double dose) and the lymph nodes in my armpit got bigger again. I suppose this is normal... I'm miserable with major hot flashes / nausea every 3/4 of an hour..and beyond exhausted.
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