I was told at the time of my dx that I have the CD38 marker at 56%. I've read a lot about it and realize that anything over 30% could (possibly) indicate that a cll patient has a more aggressive form of the disease and that they might be more resistant to treatment.
Does anyone else on the discussion board have this marker? If so, would you share your thoughts and experiences with me?
At the time of my dx in Sept 2001 my flow cyomentry report indicated I had a CD38 marker 98%. Yes, 98%. Some of the reports we read on line at that time gave me a 5 year prognosis. It uspset my husband so much he's stopped reading any of the reports on line, and listens only to my oncologist. I still read stuff but keep an open mind.
Well, it's easier now to keep an open mind, 8 years later, still here, still relatively healthy.
I was on w&w for 6.5 years, not needing any treatment until March 2008. Tried a low-dose cytoxan pill, didn't work, so then did the usual chemo route, with R CVP as my protocal. I have more of an issue with the enlarged nodes all over than with the extremely high WBC counts. And it was because of some really large nodes under the jaw and neck causing pain that I gave in to treatment.
My oncologist said when I was dx'd that I'd most likely had the cll for 5-10 years prior to the time of dx based on some old medical records which indicated I'd had some high WBC counts several times over the years, always blamed on an infection.
I fared well with the treatment, but I am taking the Rituxan Maintenance protocal (Rituxan 1 time per week x 4 weeks, skip 6 months, do again up to 4 times). I had the first rount of maintenance in March 2009 and am scheduled to do the second round in October. Handled the first round just fine.
I'm 62, still working full time, rarely ill, and feeling very blessed about that. Fatigue has been more of an issue than anything, but again, I'm stilll able to do most of the things I want to do in life.
I'm hopeful knowing all of this will help you calm your fears about the CD38 marker. We are all so very different, and this cll seems to follow it's own path with each of us. But knowing others with this 'poor prognostic marker' helped me when I was newly diagnosed and feeling gloom and doom. So maybe my story will help to chase away some of your gloom as well.
When were you dx'd? Any problems thus far?
At any point in the CLL journey that you have concerns the solution I have found is to make an appointment with one of the top CLL researchers. They have spent their careers dedicated to a cancer that many oncologists have limited understanding of. Any oncologist worth their salt should be very receptive to the advice and guidance that is provided by these physicians. Personlly, I travel from Atlanta to Houston and see Dr. Keating at MD Anderson. He offers researched opinions and treatment strategies that I could not get in Atlanta. I have started treatment and my goal is the elimination of disease (zero MRD) this will provide the best chance for a very long remission and a 50% chance of the CLL of not coming back. I am 50 yrs old with school age children and the elimination of MRD is the goal that I have my sights on. If you have a CLL profile that increases your risk for more aggressive disease see one of the top docs--they are accessible and available. Good Luck.
The marker, CD38, is thought to make cll more aggressive and more resistant to treatment. I was diagnosed three years ago this month and was told today at my check-up that I will need to begin chemo in December. I am presently a 55 year-old female, so I was diagnosed at age 52.
Do you mind...why does your doctor feel you need treatment now? What has changed since you were first diagnosed? I am curious...I was diagnosed a year and a half ago at age 51. I am in the Watch and wait stage.
I have noticed in the past year that I get winded a lot easier. I have problems with asthma also, and I when I am on Advair my WBC goes up (from low 20's to high 30's). I have an appt Jan. 4, so it will be interesting to see what my numbers are now. (last check was Sept)
Good luck with your upcoming treatments!
I might be responding here a little late.
Glad to hear your doing well.
You may interested in joining a CLL support group on face book.
When on face book type in CLL on the search engine and it should take you there.
Its been a great help to me.
I am a 53 year old male.
I was dxg in Oct 2009 with CLL and have the CD38 marker at age 52.
After thinking back on things, and the symptoms, I was likely with CLL for at least 18 months, for up to 2 years before the firm dxg.
At the time of dxg my WBC was over 300,000 so I went right in to chemo.
I went thru 4 cycles of FC chemo, 3 times a month for 4 months, with rituxam 5 times once a month.
In March 2009 I was put into remission.
I was going in for blood checks with all going ok every 2 months.
Last Sept I noticed my lymphnodes starting to swell up.
So I went in for a CT and PET scan, and a lymphnode biopsy, which showed the CLL was acting up again.
WBC is now a little under 13,000, not scary bad. So now I am considered refractory.
I was sent in to look at a possible stem cell transplant and the consult with a specialist in that field scared the hell out of me.
So I will be going in for more tests soon, and possibly a bone marrow biopsy.
Then its back to more chemo. Which kind depends on the tests.
I too am fairly healthy. Working full time.
I have the night sweats at times, and get tired easy.
Plus some bone pain from time to time. But nothing that I can not handle.
Good luck to you on your journey and best of luck to you as well.
Thanks for the notes.
Now I dont mean to scare anyone with CLL who may be considering a stem cell transplant.
but here is my story;
After relapsing after a 9 month remission, my onc. sent me in to consult with a stem cell transplant specialist at the Fred Hutchingson Cancer Treatment Center in Seattle, which is supposed to be one of the premier places in the country for cancer treament.
My onc. wnated to make sure that if he treats me with chemo again, to be sure not to damage anything that may hinder a possible stem cell transplant, which he thought may be a good option for me to consider.
I met with a CLL specilist who does nothing but treat CLL at the Hutch in Seattle, (I have been told not to name names).
My wife has nick named him Dr. Death!
He basicly told me that anyone with CLL can not use their own stem cells for a transplant, so you would be looking at a donor stem cell.
Here are the pros;
1. It may cure CLL.
Here are the semi pro and semi cons;
1. As most of the transplant is done as an out patient procedure, (you come in every day for 4 months) you will have to live within a 15 minute drive of the facility. (my home is 40 minutes from the facility, so I would have to move).
2. You can not work for a minimum of 6 months, with a year being likely. As I am only 53, if I was retired that would be ok, but with no job, no income, which means ssc disability).
3. Going on ssc disabilty means much less income than what I acustomed to, as most Americans, I spend what I make, so I live paycheck to paycheck. (My last round of chemo, including 2 weeks in the hospital tapped my savings account clean). If I make less than my debt, I will go bankrupt.
4. I also have to rent a place near the treatment facility, (I am paying a mortgage, so there is no money for rent).
5. I have to have a full time care taker, 24/7 that is not provided by the treatment facility.
Here are the cons:
1. With a donor transplant, there is a 25% chance you will die before the 1st 100 days are over. Usually from your body rejecting the donor cells.
2. If you survive the 1st 100 days, there is only a 50% chance of making it one year.
3. If you survive after the first year, there is an additional 50% chance you wont live 3 years.
4. Then if you make it past 3 years, you likely will not see 5 years.
5. The procedure will cost almost $400,000.00 plus housing and care.
6. If I am not working, I loose my insurance. So I will have to go on to my wifes insurance. (So she can not be my care provider as she has to work to keep her insurance).
Plus the so called specialist had the bed side mannor of a wall.
You would kind of think they would want to make you feel warm and fuzzy.
But he sure came across as a glass half empty guy.
A friend who has a history of medical issues thinks that because this specialist is supposed to one of the leaders in his field, he really screens who he treats to keep his success rate high. So when some one with the CD38 marker comes in he tries to discourge you.
I even talked to him about maint chemo but he thinks with the CD38 marker it wont work.
Needless to say I am going to prove him wrong.
So that is my experience with possible stem cell transplants.
I know someone who got transplant at Fred Hutchison for CLL. He is doing very well. On the one hand, you are lucky to be close to the Hutch. I am 44 in some state of remission with CLL. Diagnosed Sept 2009. I got treated at CTCA. My doc there wanted to move to transplant as next action. I told him I do not want to do a transplant. He don't care-he is a transplanter. So I am seeing another doc.
I am now doing Rituxan maintance 6 months after my FCR that ended in May. There are some new treatments coming that may offer some hope, i.e. PCI-32765, CAl 101. These drugs are in same class as Gleevec for CML. Will it work for CLL like it does with CML??? We hope so. They are in Clinical trials now. You might want to speak to someone about getting in one of these trials if possible. What are your other prognostics? Unmutated,11q or 17P? If you have the 17P there may not be time to delay. Good thing about transplant is it can cure. But as you have found out it carries a huge risk. When I first got diagnosed I wanted a transplant...cure me...but after I found out about the transplant I said...well lets slow down a bit. the thing about transplant for it to be succesful is the CLL has to be knocked back pretty good before transplant. The German CLL 8 study regarding FCR came out with those with 17P should consider transplant. Other wise It looks like some maintance therapy or clinical trial as I recall reading the report. I had small amount of 11q and unmutated. I was CD 38 neg. I had a few small lymph nodes after 6 rounds of FCR. I had massive lymphs before treatment. Send me a personal message and I will send you my email if you want to talk more. We are all in this boat together. We will pray and hope for the breakthrough treatment to come fast-I truly believe it is coming-just a question of when. Dr Keating in recent interview with Andrew Schorr said 3-5 years!