Recent CLL Diagnosis

Ken60
Ken60 Member Posts: 2
edited March 2014 in Leukemia #1
I am a 60 year old man who recently was diagnosed with CLL. It was found thru routine bloodwork preceding a physical exam.

I have an oncologist (something I did not think I would have 2 weeks ago) and she has staged it as Stage II with some symptoms (enlarged nodes and spleen, weight loss, fatigue).

She wants to treat it and I am to have bone marrow drawn on 10/7 to look for one specific thing which will tell her the drugs to use in the chemo.

I am planning to participate in a clinical trial. Any thoughts on the pros and cons of this?

The first I heard of my condition was on 9/15. It was confirmed by more bloodwork within days, and I have been busy ever since getting some plans made and some info out to family and friends so they could hear it from me and not thru the grapevine (which would be kind of a slap in the face for those close to you.

I'll be reading what is going on in you folks' lives and probably will have some questions.

Thanks in advance for the support. I am not crushed by the news, by the way, as I have been encouraged that CLL is very manageable. I am sure it is going to be a major trial, however. Several of my immediate family have had serious medical conditions with ongoing complications. I always said if I could take those away and put them onto myself I would. It's hard to watch your children suffer. At least this happened to me and not them!

Ken

Comments

  • Montana Boy
    Montana Boy Member Posts: 3
    #2
    CLL Experience
    Hi Ken,

    Sorry to hear of your diagnosis of CLL. It is managable, but some patients like my spouse is more aggresive than most.

    my husband who was diagnosed with CLL was found in the same manner as you (thru a routine physical exam) He was told his was a slow progressing one as well, but afterabout 6 months along, they decided to do Chemo. (as we now know, his CLL is more aggresive than most)
    ....So, he did chemo outpatient treatment for 3 days in a row, once a month for 6 months. After treatment his check-ups were fine for only about 18 months, and now his Lymph glands, and spleen are enlarged. So more chemo again for the 2nd time, was ordered. This time only 2 days in a row, once a month for 6 months. My husband is 67 yrs. old, and was diagnosed at 63.

    I don't mean to discourage you, but just be sure to keep up with your check-ups.....
    Were you ever told you could do a bone marrow transplant (BMT) if needed in the future? The DR.s we talked to all seemed to think MY spouse wasnt a candidate, because of his age?

    Best of luck to you, and if we can answer any more of your questions, just ask .... Montana Boy and wife.
  • Ken60
    Ken60 Member Posts: 2
    #3
    Montana Boy said:

    CLL Experience
    Hi Ken,

    Sorry to hear of your diagnosis of CLL. It is managable, but some patients like my spouse is more aggresive than most.

    my husband who was diagnosed with CLL was found in the same manner as you (thru a routine physical exam) He was told his was a slow progressing one as well, but afterabout 6 months along, they decided to do Chemo. (as we now know, his CLL is more aggresive than most)
    ....So, he did chemo outpatient treatment for 3 days in a row, once a month for 6 months. After treatment his check-ups were fine for only about 18 months, and now his Lymph glands, and spleen are enlarged. So more chemo again for the 2nd time, was ordered. This time only 2 days in a row, once a month for 6 months. My husband is 67 yrs. old, and was diagnosed at 63.

    I don't mean to discourage you, but just be sure to keep up with your check-ups.....
    Were you ever told you could do a bone marrow transplant (BMT) if needed in the future? The DR.s we talked to all seemed to think MY spouse wasnt a candidate, because of his age?

    Best of luck to you, and if we can answer any more of your questions, just ask .... Montana Boy and wife.

    Thank you for your reply.
    Thank you for your reply. No, a marrow transplant has never been mentioned. I have only met with my oncologist twice.

    The bone marrow draw taken 3 days ago showed only 20 per cent of my marrow to be involved, which the doc said was a good number. Any per cent given to you just for sake of comparison?

    I begin Chemo in two days, with a 5 day-in-a-row (followed by three weeks off) schedule each month for six months.

    The way this has been presented to me by every health care person I have dealt with so far is that "Oh, this is ONLY CLL, and the prognosis is great", etc. I would be willing to have the less optimistic reports now rather than later just to avoid the disappointment of false hopes. I can take the hard facts and value your reply.

    I know it is good to keep a positive attitude (which seems to be what they are trying to maintain) but the down sides are easier to take if you have been expecting the possibility right along rather than thinking that the worst "can't happen to me".

    Thank you and I will keep Montana Boy in my prayers as I enter this "new world".

    A wife who will share the experience is a blessing...I have one and it sounds like you are one for him. Do not underestimate the value of that!! It means a LOT!

    Ken and Dawn

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