platelets low

[welshlady52]

hi all,just had my 4 month check with consultant and everything ok but he said platelets were a bit low,he didnt tell me what they were but wants to keep an eye on them,he wants to see me again in 4 months....but since i got home i have worried myself stupid looking online,i know i shouldnt....some say low platelets mean that i will need treatment... when i asked the consultant what low platelets meant he said well i may need a bone marrow biopsy to see whats going on if they are low next time....i am panicking like mad now and i wish i had asked him more questions.....can anyone give me any information please....many thanks

[Hidden]

Hi Welshlady52

Try not to panic, think of the words he used, a bit low, and he does not want to see you for another 4 months. These things say to me no reason to panic, see what they are like in 4 months, they may well have gone back up.

If he was concerned he would have made your next appointment earlier.

Best wishes Bubnjay

[welshlady52 in reply to Hidden]

Thank you so much for your reply Bubnjay....my husband said the same,he wouldnt leave it so long....but i go on the web and i know i shouldnt look it up......but it says if theyre low you go from stage A to stage C and its freaked me out tbh....

[Newdawn Administrator]

Hi Welshlady,

My reaction was the same as Bubnjay's when I read your post. An appointment to re-check in 4 months time doesn't sound like an alarmed response! However you're bound to be concerned and nobody can totally reassure you except your Consultant or medical team. I think a call to his secretary asking for a print out of results or perhaps a chat to the Specialist Nurse on the Unit would help. How low is 'a bit low?'....how much have they dropped?....has it been an emerging problem and has there been an associated problem with your spleen?

I don't think it's unreasonable to ask for further clarification or you'll spend the next 4 months panicking and that's not good.

This now dated but nevertheless excellent and still relevant explanation on thrombocytopenia from Chaya Venkat is very helpful;

updates.clltopics.org/667-w...

Newdawn

[welshlady52 in reply to Newdawn]

Thanks Newdawn.....yes i think i need to speak to someone for my own sanity.He examined me this afternoon and didnt say anything was swollen at all...ive got no lymph node swelling as far as i know....but he spooked me a bit when he mentioned maybe a biopsy....i should have asked him more when i was there....thanks for replying....i will ring on monday to see if i can speak to the secretary...i have never spoken to anyone down the hospital before apart from the consultant,i didnt know you could speak to a specialist nurse.

[Cllcanada Top Poster CURE Hero]

It could be that platelets are trapped in your spleen... not everything is Thrombocytopenia either...

I think your consultant's comment was observational... if there were concerns he would be ordering other tests...

The rate of platelet count drop is more important perhaps than the count...

[welshlady52]

Thank you for the reply....

[AussieNeil Administrator]

The normal range for platelets is between 150 and 450. Mine were under the normal range at diagnosis, five and a half years ago and trend wise they've been dropping ever since. They still haven't dropped low enough to warrant starting treatment and occasionally recover strongly too. In line with what Chris (Cllcanada) says, it's the overall trend that's important.

I'd say that your consultant is just doing an excellent job monitoring you, has just made an observational comment and is keeping you informed of what he may need to do if your downward platelet trend continues. Many of us would love to have a specialist that kept us better informed! I gather he hasn't increased the frequency your blood testing, which is also reassuring.

If you do end up having a bone marrow biopsy (which you note your specialist says may happen), then you'll have a much better idea of what's happening with your CLL. That's got to help with one of the worst aspects of living with this disease - the uncertainty...

As others have said, 4 months is good!

Neil

[welshlady52 in reply to AussieNeil]

Thank you so much Neil....means so much and thanks for replying..x

[MsLockYourPosts Passed Volunteer]

After 12 years of dealing with this I would love to hear 4 months, and I am doing relatively well, but my doctor keeps me on a short leash if she sees anything of concern. I agree that you should call and get a copy of your labs and a clarification for your own sanity, but it sounds like, as others have said, that your doctor noted something a little different, that he plans to look for a trend, and that if there is one he has a plan of action.

[welshlady52 in reply to MsLockYourPosts]

Thank you for the reply,means so much to me to be able to speak to you all x

[Cammie]

Couldn't agree more with the experienced previous posters!

We don't always ask the right questions in a consultation but you should contact the hospital and speak to the consultants secretary or the specialist nurse that is attached to the haematology dept.

4 months is a good time to ensure a comparison can be made in respect of changes and low platelets do not always mean you are due for treatment because they do vary on the journey we all take. Could be a bit anaemic etc. put your mind at rest welsh lady give them a call.

[hammyj]

I have had a low platelet count (around 70) for a coupe of years now. I also had a bone marrow biopsy. The biopsy involved having the area numbed and then a needle inserted into the bone. It's not as bad as it sounds (like anything I suppose). You don't feel the needle going in but it is a weird sensation when it's in the bone and a bit uncomfortable for a few days after - not really sore though.

With regards my low platelet count, it doesn't really affect me - I don't really bleed excessively or bruise easily.

I don't know what your count is but for me it's no big deal and the bone marrow biopsy isn't that bad.

Hope that helps.

[welshlady52 in reply to hammyj]

Thanks so much for replying,and putting my mind at ease.....i came home and read about low platelets,i know i shouldnt read anything on here, and it said if you have low platelets then its time to start treatment and it takes u from stage A to stage C....which really worried me. I feel so much more settled to read your reply,and i thank you so so much...x

[Paul_Mangold]

I agree with everyone above, you experienced an observational moment, but being relatively newly diagnosed, you are suffering normal anxiety when you think about what was said. I'm just under the two year mark since I received the news, and I still sometimes miss a question. What really helps me is scheduling blood work in a timely enough fashion as to be able to get the results before my scheduled appointment. I have grown to understand (just enough to make me dangerous) my numbers, I ask questions based upon what I see. More times than not, my doctor reminds me that these fluctuations are my new normal. I hope this helps a bit. God bless.

[welshlady52 in reply to Paul_Mangold]

Thanks so much for your advice,means a lot

[Hidden]

Your doc should be giving you a copy of EVERY blood test done on you and you should be keeping them in a file for future reference. Pardon me while I rage --- IMHO every year EVERYONE should have:

- a CBC w/differential and platelets panel

- a "Comprehensive Metabolic" panel (glucose, urea, albumin/globulin, etc)

- a Lipid panel (cholesterol, trigylcerides, etc)

and keep a copy of the results.

I don't know if it's this way in UK/Europe but in the states you can order the tests without a prescription on-line or from walk-in blood draw centers. The samples go to one of the two major US labs (LabCorp & Quest Diagnostics) and you get the results in a few days. It's the cheapest insurance you can buy, I pay $150~200 depending on what extra tests I want.

[welshlady52 in reply to Hidden]

i have never ever had any copies of my blood results but am going to ask for them from now on,,,thank you

[Hidden in reply to welshlady52]

In general having good records of comprehensive blood tests over a long period of time is often helpful in diagnosing a wide rage of illnesses. In CLL on such factor is how long it takes the Absolute Lymphocyte count to double - not the gross white cell count. When I went for my first exam for possible leukemia I walked in with copies of 15 years of blood tests and a table of the values for the most pertinent ones for the past decade. It greatly speeded the process.

For countries with national health systems if they _reliably_ keep good records so much the better, but I have a deep distrust for all Nanny State "let us do your thinking for you" schemes.

[MsLockYourPosts Passed Volunteer in reply to Hidden]

Lab Rat - Where are you in the States? I have to have orders for all lab draws at Quest, and can't get the results for several days even if the orders include a send to patient on the list of where they are to be sent.

Pat

[Hidden in reply to MsLockYourPosts]

Hmmm ... didn't realize this was still a problem. Haven't run into it in a couple of decades.

Remember, these tests do NOT involve a doctor nor insurance. I pay for them myself.

In live in Texas, in the country west of Fort Worth. Haven't needed to use these services in a couple of years but probably will shortly since my CLL check-ups don't do thyroid, etc. I use one of 2 means depending upon where I am.

If I'm in Corpus Christi I use a walk-in phlebotomy service called Med-Check labs, pay them and they draw the blood and send the samples to Quest that night. If I have the report mailed it usually takes two days, sometimes 3. Alternatively I have it sent to Med-check and either pick it up there or they'll fax it. Sometimes comes back in 1 day, never more than 2 except one foul up.

If I'm in north Texas I use an on-line order company called Private MD Labs who cut the order and I pay to and then use Lab Corp for the draw. They are closer to me than Quest. Again, results are normally over-night, sometimes 2. You retrieve them by logging on the Private MD Labs' web site and downloading them as a PDF.

privatemdlabs.com/

[Hidden in reply to MsLockYourPosts]

You know, long ago the blood labs didn't even want to send you a copy of the tests; wanted you to get them from your doctor. I had a few arguments. Thought that had gone by the wayside but if your doc wrote a script they may have requested and waited his approval to send anyway.

That always greatly irritated me, especially when I was paying -- I did without medical insurance for a couple of decades. My money, My rules!!

[fish61]

WE TEND TO TREAT DOCTORS AS IF THEY ARE THE ANSWER TO EVERYTHING, AND WHAT THEY SAY IS GOSPEL...THEIR PROBLEM IS THEY HAVEN'T HAD THE DISEASE !

I AM AN ARROGANT OLD COOT AND SINCE I AM PAYING THIS YOUNGSTER I WOULD CALL AND MAKE A NEW APPOINTMENT FOR TOMORROW OR ASAP.

LIFE IS SHORT, WHY SPEND IT WORRYING ABOUT SOMETHING THAT MAY NOT BE A PROBLEM.

I HAVE HAD MANY SURGERIES AND EACH TIME THE MD SAID " YOU WILL BE BACK TO NORMAL IN A WEEK"!

WELL THEY ARE NOT IN THEIR 70'S, AND THEY HAVE NOT GONE THRU THE SURGERY, ERGO THEY HAVE NO IDEA HOW LONG IT WILL TAKE TO RECOVER. FISH 61

[welshlady52]

i agree with you,i am going to ring and speak to someone on monday

[ThreeWs]

Hi Welshlady52,

You have been given a lot of very good advice and I will only add that low platelets need to be assessed in context. For example, when I was carrying a huge tumor burden of ALC (Absolute Lymphocyte Count) over 300k and had node masses that were beginning to interfere with my breathing and my bone marrow was 91% packed I was close to being treated and my platelets where hanging in around 100. The CLL specialist at NIH (National Institutes of Health in US) told me that if my platelets dropped and stayed below 95 he would initiate treatment. TX will at first drop cell counts to include platelets. Years later when I was on Ibrutinib I had an unexpected drop from 95 to 66 which was fairly significant but 66 is not dangerous in itself. Further my tumor burden was very low during this drop so the cautionary measure of once a month monitoring was followed. My 66 count was less dangerous with low tumor than a 90 count would have been at a high tumor level anticipating TX.

Platelets will vary from what we eat as well as from the pathology of our cancer or autoimmune condition. Chances are good you are not in danger and as others have said "watch the trend". Low platelets can have a number of causes and my platelets have been chronically low since DX in 2006. Now at a time with very little detectable CLL the platelet count is still 95 to 100. My low platelets are probably caused by a chronic ITP condition or Idiopathic Thrombocytopenic Purpura. I have no problems with bleeding or bruising but would say I am a bit more sensitive.

hope this helps,

WWW

[welshlady52 in reply to ThreeWs]

Thank you so much for your reply....means a lot

[MsLockYourPosts Passed Volunteer]

I would also suggest taking a recording device to appointments. When the discussion gets technical it's hard to process everything, especially at first. It helps to be able to go home and play back the recording as many times as is necessary to catch anything important.

Pat

[Cllcanada Top Poster CURE Hero in reply to MsLockYourPosts]

Absolutely Pat!

Speaking of recording... I'm surprised how many patients don't know that their iPhones are wonderful recording devices...

The App Recordium even allows you to annotate the sound files, so you can go back and actually find what your doctor said... simply flag it with a note to yourself.... you can also easily edit the recordings and remove the non important parts and distill things to what matters to you!

This level of sophistication isn't for everyone but for me it has been extremely valuable...

Here is the App...

itunes.apple.com/ca/app/rec...

~chris

[Sbkgraphics]

When you say the CLL Topics article is dated, is there any update? Or is the information old, but remain just as valid today?

Thanks for any feedback.

[woodside]

Couple of things, please keep a spread sheet( excel, or just hand drawn) of blood counts, the individual sheets of results quickly pile up, become meaningless. There are samples on line. Chaya was really good at helping us, do wish she were back in these forum. Mist docs do not do this and you will help them see the trends if you keep track. one result s TOTALLY meaningless, it is the trend that matters.

Platelets are critical for clotting. In addition many of us have enlarged Spleens, this makes us particularly vulnerable to injuries. For this reason I have limited bicycle riding, a sport I dearly love.

Google Eliizabeth Holmes ( her company is Theranos) , this is an amazing hope for us, which is under recognized. This young woman has developed blood testing equipment, process, which is quick and many tests can be accurately done from a tiny drop of blood, no need for a vial. Already many Oncologists do blood counts from a pinprick at visits, results available in five minutes, Walmart has partnered with her and in a year or so you can just walk into the neighborhood drug store, with a requisition from the doc, have a pinprick test, 5 mins later you get a print out of the results, copy to your doc. This is not science fiction, the investment markets have taken notice and she has an estimated worth of 9 Billion dollars, based on the value of this technology.

[cacherjac in reply to woodside]

Hi, I understand your panic, my platelets were 90 at diagnosis a month ago, like you I read that low platelets increases the stage and I really fretted about it, I rang the consultant a week after dx as I had questions, I asked her and she said I was stage a, and they look at the trends, some people have naturally lower platelets, if they suddenly plummet they worry. My panic this week are my neck nodes which feel like peas.