• maggiev's Avatar

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    User: Patisblonde

  • maggiev's Avatar

    maggiev asked a questionLeukemia

    input please

    9 answers
    • greece's Avatar
      greece

      I am in watch and wait also. I feel the same as before and I don't worry. I have time to worry if my doctor says my disease has progressed. It is 2 years now since my diagnosis. I was being monitored every 3 months but now its every 6 months. I looked up my condition on the Internet and compared what my doctor told me to what I read and it was right on. I make sure to keep my medical appointments to be monitored. I have other major illnesses which I know will probably cause my demise way before CLL. I will be 71 in November. I wish you well and can only tell you that worrying only causes you to lose peace of mind and does not help your condition. Try to focus on living one day at a time and not on the future. The things we worry about seldom occur.

      over 1 year ago
    • GailB's Avatar
      GailB (Best Answer!)

      I don't know how much you know about your CLL but for me every patient should know as much as they can about their disease. Have you been to the Leukemia Lymphoma Society website www.lls.org they have a lot of good information.They have a booklet at http://www.lls.org/resource-center/download-or-order-free-publications?language=English&category=Leukemia that has a lot of good information. CLL is normally so slow growing that for me I don't consider myself sick you can live for many years with the disease without having to be treated, getting your blood work done is just to confirm that it is still growing slowly and nothing needs to be done. I have to have my blood work done every 3 months, this is just to confirm that it is still growing slowly and there is nothing to be done. Just consider each visit as confirmation that you have nothing to worry about. I have CLL/SLL and the Leukemia is still in remission but the Lymphoma is not. When I get sick from other things and the Doctor starts saying because I'm sick they have to take extra precautions or they have to treat me differently, I instinctively want to say no I am not sick, what are you talking about, but after 4 years I have had to get use to that. For all CLL patients time is our friend.....gives researches time to come up with better treatments.

      over 1 year ago
    • rlyndecker's Avatar
      rlyndecker

      That's what the first Oncologist said to me, I walked out stunned. I swore I'd never go back. I never have. I went and found CLL experts. Much more compassionate. Yes, CLL is slow but as others stated it can change in an instant. My oncologist had me check in with him every 3 months the last year, he really was anti-treatment but I had extreme fatigue and huge lymph nodes that were causing issues, even with an extremely high WBC/ALC doubling he still didn't want to treat me. It was everything combined that finally pushed him over the edge and it was literally sudden- as in I saw him Thurs. he said "we may need to start soon" to leaving me a Voicemail on Sunday saying "I've called everything in, you're starting Wed."! You just never know so my advice find a CLL dr. and try to not worry about it too much!

      over 1 year ago
  • maggiev's Avatar

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    Question: input please

  • maggiev's Avatar

    maggiev asked a questionLeukemia

    cll went for second opinoin one wants to start treatment one wait

    5 answers
    • barryboomer's Avatar
      barryboomer

      I'd wait awhile and start to get as healthy as you can. Maybe it won't get worse....never know.

      almost 2 years ago
    • greece's Avatar
      greece

      I have CLL diagnosed 1 year ago, and not having treatment. I have two enlarged lymph nodes but my wbc has risen very slowly. My MD HAS RECOMMENDED WATCH AND WAIT. I also sleep too much. I feel like I am sleeping my life away.. I have no other symptoms other than easy bruising. I have not sought another opinion. I have researched this. condition, analyzed my test results and all the information I found confirmed my doctor's recommendation. It is scary to know that I have a form of leukemia, a blood cancer but I chose a doctor in a well known cancer treatment facility for diagnosis and treatment and I believe this watch and wait is best. I don't want to take any medication that can cause side effects or other damage unnecessarily. That is the last resort! Try and take each day at a time and let go of worry.

      almost 2 years ago
    • Blazin's Avatar
      Blazin

      Hi Maggie
      First I do agree with cjs7159. ask,ask,ask!!!! Ask both for the reasons of why thats what they want to do. And i also agree with barryboomer the longer you don't start treatment the better but thats my opinion only. Also don't let people scare you about how difficult chemo is we are all different in the way it effects us. Ive had CLL for almost 7 yrs now and I've had 5 different kinds of treatments and have had very little side effects,i think the worst thing i went through was being drained of energy at about 6-7pm which had an easy fix, sit back relax an re-energize. And you should find out from each doctor why thats their decision. Remember the final word is always yours. If you find out what the treatment would be if you were to start now, those of us with cll who have taken that type of chemo could tell you about our experiences on that drug. Keep us informed on how things work out for you.
      All the best
      Blazin
      Keep On Living!!!

      almost 2 years ago
  • maggiev's Avatar

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  • maggiev's Avatar

    maggiev asked a questionLeukemia

    So worn out

    5 answers
    • IronMom45's Avatar
      IronMom45

      Good point on the thyroid just not thinking.

      over 2 years ago
    • cjs7159's Avatar
      cjs7159

      The bruising is likely from low platelet count. My doctor always tells me that severe fatigue is a sign that you may need treatment if you are not already receiving it. Stay strong & rest when your body tells you to, it knows what you need.

      over 2 years ago
    • still_fighting's Avatar
      still_fighting

      If you are still in the 'watch and wait' stage you probably need to get in touch with your oncologist and have a blood workup. The leukemia will make you more tired than usual but if you start getting weak with the extreme tiredness then contact your doctor right away. Everyone is different so I can't say about the stomach, the only time I had a problem with my stomach is when I was doing my chemo treatments and my oncologist gave me something that helped a lot. I get my blood checked every 3 months and as a leukemia patient you should be getting checked regularly too. I would freak as my blood count rose but my doctors kept telling me 'it is within reasonable limits' until I had to start my radical chemo. If you get your blood tests done and your blood count is high then please make sure to ask what it means to you. It will lessen the stress of having to worry as much. Take all necessary precautions, take your vitamins, eat well, get at least a little activity in your day, rest when you feel worn-out, get your flu shot, pneumonia shot, shingles shot (not all at once though...lol) have germex in your house and carry a small bottle. We have leukemia but we can't stop living! God bless and no matter what...keep fighting!

      over 2 years ago