these are my numbers on 05/09/2020
I diagnosed B-CLL almost 7 months ago. I'm on W&W. my oncologist said I should be in this stage until my platelets and hemoglobin come under 100 and 10 then using drugs. Nodes under my arms have not become extremely large yet. no other symptoms.
Question: is there anyone who has my signs and is similar to me? please comments and tell me what should I do now?
Good evening mazaheri
Your #s are elevated in the world of cll slightly. Have you seen a CLL specialist yet ? If not you should see one and keep your local oncologist every 3 months for your blood work and have the 2 Drs share your info. I’m not having swelling in the lymph nodes so I’m not having your symptoms. But everyone is different.
Have you had a Fish test done yet? Do you know it your mutated or unmutated ? There are meds your Dr can give you to possibly reduce your nodes. And there are meds that will definitely put all your # and nodes back to normal. It’s a balancing act that’s why a cll specialist is strongly advised. In closing I don’t think your cbc’s are needing treatment but thats where a cll specialist is a must.
Best wishes John
Thanks for replying John
I can't find a cll specialist in my country-iran. But I should do that. My oncologist said that it doesn't need to take fish test now until my treatment. He said me until your platelets comes under 100 and hemoglobin 10 it doesn't need fish test because the test numbers may will be changed during the time.
I need your guide thank you very much.
If you don’t have a CLL specialist available I would get as much knowledge as possible so you can be your own advocate.
I would ask for a Fish test, the odds of the fish changing is very small. It will give you and your Dr what the pace of your CLL is , and if treatment is needed in the future yes it’s done again to insure your not 17p.
I would also want my mutation status as that will also tell you your pace of the Cll and that mutation never changes.
I don’t know how Iran’s medical is , do you have private insurance or is it social medical ? If it’s social medical you may not have the option of getting these tests done.
In any event I’m sure your a long way from treatment.
Best wishes John.
Thanks John very useful text very very thank you
I should get a CII specialist and do fish test .my insurance is most like a private insurance. After fish test every things for treatment is clear .I need your information and other's to combat this disease.
Best wishes Hussain.
I was there 3 years ago. Still on W&W😀
