When to treat CLL?

Twosteprav
Twosteprav Member Posts: 2
edited March 2014 in Leukemia #1
I have always had low platelets and doctors didn't say a word until I was

diagnoses with CLL Leukemia then they use it as an excuse to put me in

stage 4 so they can justify giving me Fludarbine. My red cells are perfect

and my white cells have stayed the same for a year. I have had no

infections, bleeding, or fevers. I do have many medical problems that make

it very dangerous for me to take Chemo. Does anyone have any suggestions?

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    Hello,

    You may want to consdider contacting the American Cancer Society's National Cancer Information Center. Cancer Information Specialists are available 24 hours a day and may be able to assist you with your questions. They can be reached at 1-800-227-2345 or by clicking on the "Contact ACS" link at the top of the page.

    Take care and be well,

    Dana
    CSN Dana
  • pennyrn
    pennyrn Member Posts: 4
    #3
    What do your ct scans show? Do you have lymph nodes involved? Is your spleen or liver enlarged? How much bone marrow is involved? These are things that help determine when to start treatment. I had Rituxin, Fludora, cytoxin and am now on Rituxin every 6 months. I feel much,much better. Have you had a recent bone marrow biopsy? Good luck and keep fighting!PennyRN
  • dmdjr1
    dmdjr1 Member Posts: 5
    #4
    My father too has other problems which complicate chemo. Atrial fibulation and de-fibulation prevent the use of most common chemo drugs. He has success in managing the disease with Lukeran (i bet i spelled that wrong), we face a continuing issue with hemolitic anemia. Which I am told is a common by-product of the CLL. They are treating with Prednisone (a steroid) but it has it's evils which may out do the good when quality of life is minimal and/or stressed durring use. I hate the Prednisone witha passion and what it does to him. I am surfing here to see if anyone knows something I don't.
    We due to his problems treat when the whites are high and relax and heal when they are low. They have said due to the double heart condition we most likely will not see a long remission (which is not true CLL is always present at the molecular level) Depending on your other conditions you may need to manage the CLL like my Dad. We have been doing this for almost 4 years now and i think he can go a long way more. It's a ride like none other, but by his side is where i plan to be! I hope you have loved ones who will stand with you. Just remember that each choice is a gift. There is no cut and dry answer. CLL takes a unique path in each person. I have not found any local CLL patients with hemolitic Anemia, but the Cancer lymphomia society tells me that it is an issue for many CLL patients. It's a little diffrent for everyone, and have hope you'll find the path thats right for you. It took us one year and 7 hospital stays and 3 emergency room scares but we found ours and you will do.
    Be well and Good Luck!

Discussion Boards