The countdown begins

Had my hemp visit yesterday and my WBC is stable at 150k but my platelets have dropped to 127k. Pretty disappointed as all my other numbers have been pretty good all along. We are going to wait 3 months before we make any decisions but if it continues I am looking at treatment in the next 6-12 months. It could be a fluke and they could rebound before my next appt but I want to prepare for the worst and pray for the best.

Surprisingly I'm ok with it. Being young and relatively healthy I'm confident (as is my doctor) that an abbreviated course of FCR will work quite well. I am 13q non mutated and my only symptoms have been fatigue and some swollen lymph nodes. Now I have to decide if I can continue traveling across the country from LA to NY and travel during chemo or if I need to find a new specialist in Los Angeles. I absolutely adore my doctor he's an amazing guy I can't imagine continuing this journey with someone else but he's getting me names from Dr Rai to investigate.

Can any members share their treatment experiences with FCR? Would you have been able to fly and look after yourself? I'm single and my family is in NY I have friends in LA who can assist me but they aren't going to nurse me. Has anyone been able to raise their platelets through natural methods?

I appreciate you all and wish you the best. Thanks in advance for your responses.

Peter

14 Replies

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  • I just logged on to talk about something similar...You travel further than I was! My home is 300 miles from where I wanted to be for everything (Dr./treatment when it came to that) and I decided I just couldn't do it but I hate TRAVELING of ANY KIND.

    If your friends aren't going to be there, I would probably try to find someone closer to NY but that's just my opinion.

  • Hi Peter

    The last place I would be except perhaps for a hospital or kindergarten class, is on a cross country flight, however I did fly 3000 kms round trip to the 2012 CLL Conference the day after my 3rd round of FR and had no problems...

    It really depends on your immune system, and how treatment will effect you... certainly have your immunoglobulin levels checked.

    I would suggest one side of the country or the other during treatment and stay there.

    FCR is 6 months, but the effects can linger in some patients...

    ~chris

  • It's hard to plan for. My doctor expects that because I'm young and heathy I will easily tolerate it. And I've been lucky no infections or issues with my immune system but I know FCR could throw me for a loop as well. My doctor said he expects 3 rounds not 6 but again won't know until I start. I guess I will begin to research the doctors in Los Angeles and keep my options open as I might not be able to spend 3 months in NYC. Thanks

  • While you could and should ask your doctor for thoughts on where you should be during treatment, how people respond to FCR is highly individual. You might be alright, but you wouldn't be wise to count on it. I agree with Chris's reply, adding that developing neutropenia with FCR is fairly common and if that happened to you, travelling with that lowered immunity, being exposed to thousands of people and eating food prepared to varying standards would be a good way of getting ill.

    You may be years away from treatment yet. I just checked my platelet counts and mine dropped to 126, six years ago, hovered around 130 for a few months then rebounded. They've below 80 since but in my last test were over 100, so I'm still in watch and wait. Discussions on treatment can start when platelets fall below 100, but one trigger for starting treatment is when they fall below 70.

    Neil

  • Hello AussieNeil, I have been having a few issues with my platelets also.

    Over the last 3 years the numbers have bounced around from 144 then

    backdown to say 110 then back up to 120, 126 and down to 103 then

    back up to.126 etc. but last month it dropped to lowest yet 90.

    At the same time my ALC were very close to normal levels.

    I would greatly appreciate your input please.

    .

  • Neil is amazing. He explains complex issues and concepts so well that anyone can grasp them. I have learned. Ore reading his posts and from his responses Than I have by all the hours of reading I have done elsewhere and I have read quite a bit.

    I emailed my doctor again because I'm a neurotic mess and tend to obsess over things to the point of making myself I'll with stress. He told me in no uncertain terms that he has seen patients platelets jump up and down, sometimes due to infections or a virus and other times for no clear reason at all. He only mentioned the 6-2 month window after I pressed him for a what if worse case. He said it's likely my numbers with either the same or go up and to let it go until my next appt. easy for him to say lolololol but I know he's right.

  • Thanks Peter :) . It's good to hear that you're easily able to understand what I've written, because I find it hard to know at what level to pitch my explanations. I'm only repeating what I've learnt from reading and listening to experts - both medical and those that have lived and learnt from living with CLL for far more years than me like Chris/Cllcanada, who has a far better memory than me and unfortunately far more experience. (See my further reply to Parramatta too.)

    Your comment about infections reminded me of my haematologist's comment to me when I was worried about my falling platelets! Our bodies are marvellously made and when we have an infection (e.g. a cold), platelets can drop while the bone marrow is working on creating lymphocytes to fight the virus. Haematologists monitor to see if the levels bounce back after you are over the cold.

    Neil

  • Thank you Petey613 I have been a bit of a "wreck" myself. It's

    hard not to be!

  • I understand that a lowered platelet count with CLL can be due to one or more causes:

    * Increasing bone marrow infiltration by CLL cells

    * An enlarged spleen (caused by the CLL) filtering more platelets out and

    * ITP (immune thrombocytopenic purpura) – where the immune system attacks and destroys good platelets before their time

    Incidentally the spleen stores blood cells (including red blood cells and platelets) for use in emergency: en.wikipedia.org/wiki/Spleen

    Reassuringly, we aren't susceptible to spontaneous bleeding until our platelets fall below 50. The trigger point of 70 for starting treatment provides some leeway if platelets fall during treatment. Your actual platelet count may be higher than the automatic count indicates too, because platelets naturally clump together and the clumped platelets aren't counted. I've seen repeatability figures of between +/- 10 to +/- 40 stated for automatic machine platelet counts, so some of the variation in our counts is just due to the difficulty of automatically counting them.

    The clotting process is extremely complex and can be influenced by far more than just your platelet levels, including foods and drugs. If you aren't seeing any unexpected bruises on your arms and legs or a rise in petechia (pinhead sized red dots of blood just under your skin), then you can relax.

    Neil

  • Thank you so much AussieNeil, you always explain things so well,

    But why does all the information on CLL always say treatment

    starts when platelets drop below 100 ? Fortunately, I don't have

    any bleeding or bruising!

  • Interestingly, the Guidelines for the diagnosis and treatment of chronic lymphocytic leukemia:

    a report from the International Workshop on Chronic Lymphocytic Leukemia

    updating the National Cancer Institute–Working Group 1996 guidelines - last updated December 2008 doesn't actually specify a platelet cut-off point for starting treatment that I can see:

    ncbi.nlm.nih.gov/pmc/articl...

    There are plenty of references to platelet levels of 100 ϫ 10 9 /L, but they relate to staging and determining the degree of response after treatment, not a trigger for starting treatment. I've been using the figure of 70 based on a response to the CLL ACOR list by Prof. Terry Hamblin on 29th August 2010 where he said "A platelet count of 70,000 is an indication for treatment" (or 70 ϫ 10 9 /L). Other experts have mentioned as low as 50.

    I'd suggest that now that we have a much greater choice of treatments which can vary in how much they depress platelet production, the actual trigger point for starting treatment based on falling platelet counts should depend on the specific treatment recommended for a given patient.

    Low platelet levels will hopefully be less of an issue in the future, as there's now the possibility of boosting them with a drug - we just need to gather evidence to prove that the benefit of doing so out weights the risk. Right now, having platelets drop too low during treatment (between 10 and 20) puts the patient at risk because they can develop spontaneous bleeding which may not be externally obvious. The platelets you make only last about 9 days and transfused platelets even less, so supporting a patient via weekly platelet transfusions is best avoided.

    Neil

  • Thank you AussieNeil your reply was very informative

    especially about Prof.Hamblin.

    I am keeping fingers crossed that my platelets have

    climbed at my next blood test.

    I wish the same for you!

  • Thanks Neil I needed to hear that. My doctor told me much the same that the platelets could easily rebound but I'm trying to think of the worse case scenario. I admit that just hearing my platelets were low felt like a gut punch. I moved to California and have basically put my life savings into a business and I have to see it get off the ground before I take 3-6 months off. But again I'm getting ahead of myself. I try my hardest to keep a positive outlook sometimes my emotions creep in even when I'm being pragmatic.

    Thanks again, you're often a calming voice of reason. I appreciate it.

    Peter

  • That is a dilemma indeed. Hard to leave a Doctor you have come to know and trust at the very time you need them the most. However, I fear the long journey may prove too exhausting both emotionally and physically. Here's hoping that IF the time comes (it may not!) that your doctor can recommend somebody for you. sending best wishes. I know you will keep us up to date. Peggy.

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