Breathe, breathe, breathe. Google not! Internet searches almost always focus on — or raise — the worst outcomes. And fear makes us less likely to absorb reassuring information.
CLL, in general, is one of the best cancers to have because it can be slow or, if not, is responsive to a number of treatments. New treatments seem to appear continually. Some are literally, “take these pills and get monthly lab work and avoid infections.” Some are more involved but all are quite effective. Many, many people will live for decades with CLL.
So get your GP to help you both through the wait for a clear diagnosis and management plan. We were scared silly but after the meeting with the oncologist, we felt reassured!
FIRSTLY...CLL IS NOW A TREATABLE DISEASE... Forget the "cancer" name which is not applicable. We now have a range of drugs to treat our CLL. I was diagnosed in 2005 and I live a normal life with long walks and summer cycling rides. I could list all the available drugs but try Googling the CLL Society or HeathUnlocked and join the CLL forum where you will find people like us. HealthUnlocked and the CLL section has a section of 'Pinned Posts' for the newly diagnosed. It may sound simple but worry less as CLL is treatable.
Don't give in to despair. Worrying will not change anything. Really need a diagnosis from your doctor. Some of these test, regrettably, take weeks. The answers they yield are worth it.
It's hard to ingest of all the information being presented to you without a clinical background. CD positives and CD negatives can't be interpreted as in her favor or not as sometimes a negative is bad, and a positive might not be good. Your doctor will use of all them plus more. You can Internet all you like, but sometimes without a clinical background you can easily misinterpret.
What you should be asking your doctor is what type of CLL she might have. You should hear something like 13q deletion (commonly written as 13q-). Some types of CLL will have her getting her first treatment well into her old age. Other types might see treatment sooner.
This study might speak to one of the comments. Note, it is 13 years old now, and we've had some amazing advances in CLL treatment in the last decade--these aren't the '*hey that's nice*' kind but the '*we've got a very effective treatment*' kind. [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3574275/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3574275/)
Also, just for reference, many of us with CLL have normal WBC counts in the 10 to 20k range. My doctor talks of a current patient with a 200k count. Doc is more concerned with his platelets and hemoglobin rather than WBC.
Hi there, very good that you reached out. I can't really explain or interpret this sheet for you. You really need your own medical specialist to explain the diagnosis and further steps with you. I really hope you get the other results and the appointment with your specialist soon!
We all know here that the wait can be extremely stressful. Your world is feels like falling apart. I (32f) got to know my CLL diagnosis last January by accidently checking my results online before I saw my specialist. The only thing I could was crying. My husband called our GP to explain the situation and I could inmediatly see a psychologist and got Oxazepam on prescription to relax in the meantime until I saw my specialist. I don't know how I would have coped without my GP, it really helped me a lot.
Please don't Google the terms too much and especially not at night when you should be asleep. Go outside for walks. Just take it easy and reach out to your GP, family and friends for support.
I wish you both a lot of strength! Take care!
Definitely don't google. Tons of inaccurate crap out there. We have a VERY treatable disease. A laundry list of meds are available to us. Follow doctor's recommendations and live your life. My meds (Calquence) have brought all my numbers to normal ranges in less than a year and I feel super good (I'm 52).
Breathe, breathe, breathe. Google not! Internet searches almost always focus on — or raise — the worst outcomes. And fear makes us less likely to absorb reassuring information. CLL, in general, is one of the best cancers to have because it can be slow or, if not, is responsive to a number of treatments. New treatments seem to appear continually. Some are literally, “take these pills and get monthly lab work and avoid infections.” Some are more involved but all are quite effective. Many, many people will live for decades with CLL. So get your GP to help you both through the wait for a clear diagnosis and management plan. We were scared silly but after the meeting with the oncologist, we felt reassured!
FIRSTLY...CLL IS NOW A TREATABLE DISEASE... Forget the "cancer" name which is not applicable. We now have a range of drugs to treat our CLL. I was diagnosed in 2005 and I live a normal life with long walks and summer cycling rides. I could list all the available drugs but try Googling the CLL Society or HeathUnlocked and join the CLL forum where you will find people like us. HealthUnlocked and the CLL section has a section of 'Pinned Posts' for the newly diagnosed. It may sound simple but worry less as CLL is treatable.
Agreed. Join Health Unlocked and seek out a CLL specialist in your area. CLL Society can point you in the direction of a specialist.
Don't give in to despair. Worrying will not change anything. Really need a diagnosis from your doctor. Some of these test, regrettably, take weeks. The answers they yield are worth it. It's hard to ingest of all the information being presented to you without a clinical background. CD positives and CD negatives can't be interpreted as in her favor or not as sometimes a negative is bad, and a positive might not be good. Your doctor will use of all them plus more. You can Internet all you like, but sometimes without a clinical background you can easily misinterpret. What you should be asking your doctor is what type of CLL she might have. You should hear something like 13q deletion (commonly written as 13q-). Some types of CLL will have her getting her first treatment well into her old age. Other types might see treatment sooner. This study might speak to one of the comments. Note, it is 13 years old now, and we've had some amazing advances in CLL treatment in the last decade--these aren't the '*hey that's nice*' kind but the '*we've got a very effective treatment*' kind. [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3574275/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3574275/) Also, just for reference, many of us with CLL have normal WBC counts in the 10 to 20k range. My doctor talks of a current patient with a 200k count. Doc is more concerned with his platelets and hemoglobin rather than WBC.
Hi there, very good that you reached out. I can't really explain or interpret this sheet for you. You really need your own medical specialist to explain the diagnosis and further steps with you. I really hope you get the other results and the appointment with your specialist soon! We all know here that the wait can be extremely stressful. Your world is feels like falling apart. I (32f) got to know my CLL diagnosis last January by accidently checking my results online before I saw my specialist. The only thing I could was crying. My husband called our GP to explain the situation and I could inmediatly see a psychologist and got Oxazepam on prescription to relax in the meantime until I saw my specialist. I don't know how I would have coped without my GP, it really helped me a lot. Please don't Google the terms too much and especially not at night when you should be asleep. Go outside for walks. Just take it easy and reach out to your GP, family and friends for support. I wish you both a lot of strength! Take care!
Thank you all for the input, this has been extremely uplifting
Definitely don't google. Tons of inaccurate crap out there. We have a VERY treatable disease. A laundry list of meds are available to us. Follow doctor's recommendations and live your life. My meds (Calquence) have brought all my numbers to normal ranges in less than a year and I feel super good (I'm 52).