Living with Cll

[starlifter]

I just want to say that at first I was afraid to start treatment and waited longer than usual , I had a white blood cell count of 270,000 with no B symptoms ie fever, chills or night sweats. But because I heard that the treatment was sometimes worse than watch and wait I procrastinated, when I started treatment I had WBC 270 , hemaglobin 10 and platelets 84 , I started to look weak and gray and had to drag my left leg because of pain of swollen lymph nodes , at first I had two cycles of cyclophosphamide , but that was really knocking me out and they wanted to do it every week , I said no and on top of that I had a thrombosis in my left leg , it happened at 2 in the morning believe me its painful but the doctor in the emergency room detected it right away and put me on lixiana for 6 months, I had to have a blood transfusion and then they changed me to the fantastic medicine called Venetoclax , I have been on it 18 months no side effects and everything now back to normal just had a recent blood test end of December and blood work was WBC 4.44, HGB 17,4 , platelets 135, neut 2.67 , all I want to say is thanks to all the great scientists and doctors out there that workday and night for us and receive little credit, again thanks a lot

[AnneHill]

Im in the uk and had treatment in 2010 for 6 mths. There werent the drugs we have now. It was chemo fcr. I think that we read about choosing a cll specialist in a particular hospital. We read about side effects of drugs and think we should have control of our treatment.We didnt have this forum. We had trust in our specialists and did as we were told. I take Ibrutinib at a low dose now which will hopefully keep the cll in remission. I have no complaints about my treatment despite the nhs having issues.

I was frightened of chemo but it never occurred to me to ignore the advice. You wont be alone in making your own decisions and I imagine your post is a warning to others of the danger of ignoring the experts.

It is frightening when we are told watch and wait is at an end. We all understand. Thankfully you have good treatment now, Anne uk

[1ofakind]

Enjoy your good health and thanks for taking the time to share your experience- Many of us can identify with that fear of starting treatment especially when we feel ok - why rock the boat? -

Your story , especially with the good result helps put things into perspective!

Stay Well!!

[wizzard166]

Hey Starlifter

I appreciated your post, because I have said numerous times on our site that I never want to start treatment unless I have no choice. That is because I've read that some of the side effects can be fatal, and other side effects although not fatal can be pretty bad. I honestly don't know the full reality of those risks, but I've figured that if the CLL isnt putting my life in danger, then why not avoid treatment.

Honestly I dont know how valid my thoughts are; just expressing why I've said what I have previously on our site. I don't know how many of our members agree with me either.

Sounds like you took it well past the danger zone by not starting treatment, so I'm happy to hear that it all worked out and now you are doing well.

Carl

[LeoPa]

Lucky you! No side effects. Awesome.

[Big_Dee]

Hello starlifter

I can agree, the V&O treatment has done an excellent job of getting my bloods in order. blessings.

[Pacificview]

Great testimonial, thank you for it. Glad it is going so well for you!

[Teddo]

Thank you for sharing your experience. Glad it worked out so well for you.