I'm waiting for my CLL specialist to get back to me I noticed that my blood test last night but within 2 weeks my total lymphocyte and WBC count have increased 25% in 2 weeks should I be worried
25% increase in WBC and total lymphocytes in 2... - CLL Support
Depends to some extent what your WBC and ALC were to start with Swissnology because doctors don't get very excited about an ALC under 30. I notice your WBC was only 10, two months ago so this wouldn't represent a significant hike.
Have you had an underlying infection that could account for this because at low levels, our numbers can ebb and wane.
Are you feeling well generally? Any increase in the node size you mentioned previously.
Thank you for the very quick reply white blood cell count is around 15 and the lymphocytes are around 12 that's the total count. my joints hurt I'm still sweating in sleep. I'm not sure if I'm a hypochondriac just getting old or you know
Unless you're generally unwell or have massively increasing nodes, I can see why your doctor wouldn't be overly concerned about those levels Swissnology.
It's understandable to be concerned but those are very low levels relatively speaking. Sweating in sleep is different to drenching night sweats which should always be reported to your doc. But you have my sympathies with both the heat problem and aching joints!
Well the additional worry is that I was fired at mycologist for going to an oncologist. I am now moving from Connecticut in the US back to Texas I will be going to MD Anderson where I used to work. Unfortunately I can't get into a CLL specialist until April 4th. My doctor here at Yale wants to do a biopsy of the soft tissue in my larynx. I was not worried about my larynx until I spoke about it to my doctor and he seems overly concerned about this. Worry #1. I do not believe that my doctor here really looked at my counts and understands that I may not see another doctor or specialist for one to two months. To be honest I'm sick and tired of monitoring all the things the doctors should be looking at and don't.
I agree with Newdawn the CLL counts are quite low and really should be measured over a longer period of time to see the trend of the ALC. A number which can fluctuate quite a bit, and being recently diagnosed I understand how scary it all seems. On the Cll front your appointment on the 4th of April is in plenty of time for the CLL specialist to assess and reassure you.
Why is the larynx being under investigation, you have not mentioned that it has been causing you any problems. I would want some plain talking from the medic who thinks you should have a biopsy as to exactly why he thinks it neccessary.
On the CLL front three months between blood tests is entirely normal, this is not like any other disease that needs immediate attention.
Try to relax hard though we understand it is in these early days . There are many here who were in a total panic who now contribute to help others who have just been diagnosed.
Do let us know how you get on on the 4th.
I would get a second opinion from an ENT who specializes in laryngology and have him work with your oncologist to make a decision about a biopsy, and I would want the biopsy to be done by a laryngologist. You don't want to end up with your voice affected for life. I agree that you probably have time to do all of this at MDA. Did one oncologist drop you because you got a second opinion? If so, you are better off without him. A good doctor welcomes second opinions. Yale is not known for CLL. Most people I see posting from Connecticut head for either Dana Farber in Boston or one of the NY Pres. Facilities. All three have top CLL specialists.
I used to work at MD Anderson I'm an IT guy that worked on the NGS moon shot. I'm pretty accustomed to searching through genomics on chromosome trying to find biomarkers that are associated with treatment. Yale has a new doctor a French guy called Dr Prebet. He actually seems very good in terms of CLL understood with the biomarkers would be but I wouldn't say that understands a great great detail at this time. I'm changing doctors because my company fired me because I was going to an oncologist too much. I was fired while seeing my oncologist at Yale. I I am from Houston I've worked for MD Anderson to be honest I can't wait to get back there. Please everybody out there there is a lot of hope you read out there. there will be a very good treatment for CLL in about a year. But in my experience I am not a doctor but in my experience we must wait for them to identify the biomarkers of 3 people died in the study. And then we must understand immuno shock and what else does ventsvlsc (199) to other areas of your body it's an inhibitor does it only inhibit cancer cells or the reaching out father to inhibit other cells this has to be research before this can go full bore. I was not worried about my larynx until Dr Prebet freaked out about it. I've had an endoscopy with an ENT. The ENT doctor didn't seem very concerned. So in my experience I have been through to 2 Hospital nanny blood draws and I still do not have results of my fish panel I don't know if I have the 17 p deletion or the malformed Q chromosome. I am really really really pissed off that it's been 2 months and I still don't know what CLL I have. Do I have the mutated CLL or the non mutated CLL this is huge in terms of time to live and survive and treatment.
Under 30K counts bounce around... not too likely to be CLL progression...look at your absolute lymphocyte count (ALC) over time, 3-4 blood test perhaps over a year... trends
If you want decent counts get something like CLL Complete, it looks at many more markers and subclones... quite expensive however...
Knowing mutated/unmutated IgHV gene puts you into one of two groups but really the variations in those groups is so wide that it really doesn't say a lot about your CLL...
The gene driving your CLL is important ...like BCR stereotyp is much more indicative of overall survival and risk of Richter's etc...
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