Finally my GP called. WBC is at 25k (up from 22.5k two weeks ago) not sure if that increase is significant or not. Flow Cytometry test came back inconclusive. His notes said that the test was Flow Cytometry PNH. He doesn't think he ordered the correct test, but was able to rule out a couple of things. He wants me to see a hematologist and is scheduling me an appointment for a week or two from now. He feels that CLL is most like culprit. I asked several questions of him including how many cases of this has he seen. He said 50 or so. Assured me that this is most likely an indolent case and it will be slow progressing. (at some point, I'd like it to stop progressing and get better)
Anyway, I guess it is time to wait another week or so. So many questions and fears. Thank you all for the kind words and support.
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baq724
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I've been plotting mine over the last several months and it bounces around (up and down) by at least that amount. I'm new to this also and have been told that you will need many more data points to plot, meaning months not weeks. Go see a hematologist to get a better understanding. The fear comes from not having clear answers to your questions.
UGH! I can relate to that as once we knew we had CLL our mutation status test that takes 2 weeks was botched and we ended up repeating and waiting 4 weeks. The waiting is truly the hardest part. Hope you can get into the hematologist quickly to get some answers. Please keep us posted and hang in there.
Baq 724, my WBC has bounced around between 22 and 33 for over 5 years now and I have been on watch and wait. My last two WBC 3 months apart were 32 and 24, but that isn't of real concern to my specialist. What is more important is the time it takes for your WBC or lymphocyte counts to double and whether you have other symptoms (sweats, lumps, weight loss etc). This has been my experience thus far.
Any lymphocyte counts in the results ? Be great when you have seen the haematologist, and whether the results are negative or positive for cll you will feel anxiety ebb away, uncertainty being guaranteed to put you on edge.
Hopefully by now you have read enough here to know that you are not in a bad place disease wise, maybe still a bit in your mind.
I well remember being told just before Christmas nearly six years ago that I needed to see the haematologist urgently. I went away to family keeping this news to myself so as not to spoil everyone's Christmas, while my mind thought I would never see another one and I might not even make it to Summer. Thought I had better get affairs sorted after the appointment which was between Christmas and New Year.
The news while still being bad was no way as bad as all I had imagined, indeed I even felt some relief. Here I am these years later relating my experience to you so you know we understand how you feel and sympathise.
Best wishes, keep us posted even if you do not have Cll.
Bubnjay - My lymphocyte count was at 18500 two weeks ago. It was at 9500 in January 2015. I am trying to stay upbeat, but I can't imagine it being anything other than CLL. When I asked my GP, he said he can't think of anything else it could be. I have not read where any benign chronic lymphocytosis could be a possibility.
Anyway, I have been referred to the KU Cancer Center here in Kansas City. The doctors here are wonderful I have heard. They started the Bone marrow Transplant center here. kumed.com/medical-services/...
Your ALC (absolute lymphocyte count) at 18.5 (we count in the thousands) is a very low one. That it has taken 17 months to go from 9 to 18.5, while upsetting for you is not too bad at all. Yes it does indicate cll but we have people here treatment free with counts approaching 300. Hard I understand not to be panicked but I feel you will be reassured when you see your haematologist. We never consider watching doubling time until your ALC is above 30 that's 30000.
Suggestions to help you get the most from your first consultation, write down and take to your appointment all the questions buzzing around in your brain, and for which you would like answers. Ask for a printout of your blood results so that if cll is confirmed you can follow the trend your ALC is taking. Take a friend with you so they can help you remember what was said
Many of us do this and after your appointment and your head clears we can point you to the chart many of us use to do this.
Hey it's honestly not the end of the world, and you will have access to the right people at the centre you linked in. Lots of us here to support you on your journey, meanwhile no googling the best information is on this site or patient power.
I was just now able to access all of my numbers online. On October 10, my WBC was 25.5 and absolute lymph count was 21.4. This number was up from 7 days prior. However, Red Blood Cell was at 5.13, Hem was at 15.7, Platelets were at 231. All three of these numbers were also up from 7 days prior.
Ready to get some answers. I still feel generally fine. Just nervous and scared as hell. It is crazy to know that I have been going through this for the past two years most likely and had no idea. Now that it is in my mind, I am overanalyzing everything I feel.
Well done, overanalysing, been there done that too. Hopefully you now feel a little more in control. ALC can skip around a bit that is why we keep results and follow the overall trend.
Nearly 4000 people on this site most will help, some just new to this like you, try to chill and go do something you enjoy we are all here looking after each other as best we can.
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