8 Responses to Re: [cml 2] bone marrow biopsy discussion

1. eloisa_1 on 2008-11-22 10:26:51.347313

   Hi Jennifer,if you are undetecible,one why 800 Gleevec and two why the bone
   marrow so often,a simple pcr blood test should do.
   Paul 5/23/05 dxt 400gleevec bcr/ abl.09% 7/12/07
   Shelley-
   I am Gleevec 800mg and undectable and I have been having them every 6 months.? I
   had one with Dr. Mauro in December and I just had one here in my new town of St.
   Louis.? I can say this, my next one whenever Dr. Mauro says its due will be with
   him.? In my opinion, there is no other in my eyes.? I like his knowledge, his
   suggestions and his bone marrow technique.?
   I had one here 3 weeks tomorrow and I am still sore, bruised and have a
   permenant indentation in my hip/butt area.? I miss Dr. Mauro.
   Oh, I wanted to tell you and maybe others who dont know,? Southwest Airlines
   will fly you and a companion once a year free on SWA if you are a cancer
   patient.? You have to have your local oncologist just fill out the form and sign
   it stating that you are going for medical treatment. So your biopsy counts.?
   Also, the Hilton, downtown Portland will give you an OSHU nightly rate.? They
   are only 5-6 minutes away from the hospital and its a beautiful hotel, walking
   distance to all the shops.
   Jennifer 35
   CML 5/13/05
   Gleevec 800mg PCRU
   Wife and mother of 3 (11,8,6)
   Jennifer S. Smith RN

2. katheryn20 on 2008-11-22 09:13:25.035064

   I don't know...... I started at a new clinic here in St. Louis and they
   apparently drew PCR's on both of my visits in April. I didn't know this as I
   was getting them every 6 months. The first one in April was undetectable and
   now it is showing 0.006. They were going to lower my dose to 600 with good
   results of the most recent BMB, but since it came back 0.006 they want me to
   stay on 800mg......
   I am SO extremely worn out and fatigues on 800mg that I really would like to
   go down to 600 or 400 but if the PCR is starting to climb if ever so small, I
   guess its unlikely that I can reduce it.
   They called today and want to check it again in 1 month to see what it is
   doing.....
   Jennifer 35
   CML 5/13/05
   Gleevec 800mg
   Wife and mother of 3 (11,8,6)
   ************************************** Get a sneak peek of the all-new AOL at
   http://discover.aol.com/memed/aolcom30tour

3. josefina_600 on 2008-11-23 02:29:26.827984

   Hi Jennifer,
   You have had an outstanding result at 800 mg but you are paying a dear price
   when it comes to your quality of life.
   The latest IRIS studies show that a 3 log reduction is sufficient to keep
   you from relapsing with your CML. So what is the point of having a 4 log
   reduction and a shitty QOL? Talk to your doctor again and see if he will let
   you try a 600 mg dose for a year while monitoring it every 3 months (more
   often for the first 3 months) to see where your PCR result is. If it remains
   at a 3 log reduction (0.01) then continue on the 600 mg dose. If your PCR
   result at the end of the year is back to a 4 log reduction and you are still
   experiencing nasty side effects, you should consider going down to a 400 mg
   dose.
   Going from PCRU to 0.006 may not mean anything. It might simply be within
   the limit of the PCR test being done in St. Louis.
   It is all common sense to me, especially since the IRIS study has shown that
   Gleevec continues to lower the PCR value the longer you take it.
   Zavie
   Zavie Miller (age 69)
   67 Shoreham Avenue
   Ottawa, Canada, K2G 3X3
   dxd AUG/99
   INF OCT/99 to FEB/00, CHF
   No meds FEB/00 to JAN/01
   Gleevec since MAR/27/01 (400 mg)
   CCR SEP/01. #102 in Zero Club
   2.8 log reduction Sep/05
   3.0 log reduction Jan/06
   2.9 log reduction Feb/07
   3.2 log reduction Jun/07
   e-mail: zmiller@...
   Tel: 613-726-1117
   Fax: 309-296-0807
   Cell: 613-202-0204

4. perla5 on 2008-11-23 12:29:13.191999

   Hi Jennifer:
   I too was on 800 mg for my first years, as my oncologist from
   MDACC said it would be better long term. In the short term I
   suffered and if I had to do it over again, I would have only done
   400 mg and had a much better quality of life for me and my kids.
   I feel much better on 400 mg and I gained a lot of weight on the
   higher dose. It is starting to come off now and I am able to
   do more with my kids.
   With warmest regards,
   Matt
   Zero Club #1078
   Jacksonville, Florida
   Dx January of 2005
   Gleevec since March of 2005
   Treated at MD Anderson
   Father of 3
   This message (including any attachments) contains confidential information
   intended for a specific individual and purpose, and is protected by law. If
   you are not the intended recipient, you should delete this message, and please
   advise me of your receipt. Any disclosure, copying, or distribution of this
   message, or the taking of any action based on it, is strictly prohibited.
   In a message dated 7/25/2007 10:57:51 P.M. Eastern Standard Time,
   zmiller@... writes:
   Hi Jennifer,
   You have had an outstanding result at 800 mg but you are paying a dear price
   when it comes to your quality of life.
   The latest IRIS studies show that a 3 log reduction is sufficient to keep
   you from relapsing with your CML. So what is the point of having a 4 log
   reduction and a shitty QOL? Talk to your doctor again and see if he will let
   you try a 600 mg dose for a year while monitoring it every 3 months (more
   often for the first 3 months) to see where your PCR result is. If it remains
   at a 3 log reduction (0.01) then continue on the 600 mg dose. If your PCR
   result at the end of the year is back to a 4 log reduction and you are still
   experiencing nasty side effects, you should consider going down to a 400 mg
   dose.
   Going from PCRU to 0.006 may not mean anything. It might simply be within
   the limit of the PCR test being done in St. Louis.
   It is all common sense to me, especially since the IRIS study has shown that
   Gleevec continues to lower the PCR value the longer you take it.
   Zavie
   Zavie Miller (age 69)
   67 Shoreham Avenue
   Ottawa, Canada, K2G 3X3
   dxd AUG/99
   INF OCT/99 to FEB/00, CHF
   No meds FEB/00 to JAN/01
   Gleevec since MAR/27/01 (400 mg)
   CCR SEP/01. #102 in Zero Club
   2.8 log reduction Sep/05
   3.0 log reduction Jan/06
   2.9 log reduction Feb/07
   3.2 log reduction Jun/07
   e-mail: _zmiller@..._ (mailto:zmiller@...)
   Tel: 613-726-1117
   Fax: 309-296-0807
   Cell: 613-202-0204

5. katheryn20 on 2008-11-24 08:31:19.252265

   Thanks Matt.
   I am learning to listen to my body as I think "it" knows best. After
   getting the call yesterday that I have been approved through my insurance to do
   a
   stem cell harvest I think I have decided to stick out the 800mg through the
   stem cell harvest and then once that process is complete, I am going to go
   down to at least 600mg. I would love to get to 400mg. I have again every
   system imaginable as well as I saw the doctor today and started Zoloft (low
   dose)
   just to maybe help with the blues of not having a normal life right now and
   maybe helping me relieve some of the fatigue. I am hoping it works.
   I would love to reduce Gleevec and be able to run with my kids and work
   again. I would like to not have to dread taking a shower because I don't have
   the energy for it. I miss being able to do the small things in life, like work
   and shower.
   I am not sure what the "right" dose for me is and with my local doctor here,
   I don't feel he does either. Its like he leaves it up to me as what we need
   to do and I really need some help making this, very important decision. I
   don't want to do something to screw up my remission rate. I am not sure what
   the right answer is.
   Thanks for all the input. I read every email. This site as been wonderful
   to me.
   Jennifer 35
   CML 5/13/05
   Gleevec 800mg
   Wife and mother of 3 (11,8,6)
   ************************************** Get a sneak peek of the all-new AOL at
   http://discover.aol.com/memed/aolcom30tour

6. perla5 on 2008-11-24 13:23:22.459170

   Jennifer:
   There is much discussion among the specialists one what dose
   we should be on. If you are PCRU, then quite frankly you could
   be on a lower "maintenance" dose. When I was on 800 mg, my
   best PCR was .05. When I reduced to 400 mg, I went to 0.00.
   In fact, my local oncologist was the one who almost demanded
   that I reduce to 400 mg as he could see I was miserable on the
   higher dose.
   He says that part of the depression comes with fighting the side
   effects constantly. And those side effects are more common at
   the higher dosage, more common and more severe. He said it
   is like a thorn in your side, which at first is not so bothersome
   but over time just begins to frustrate the heck out of you.
   I feel much happier on 400 mg and hope you will consider a lower
   dose when you finish your harvest. You can always increase it back
   to 800 mg..
   Funny thing, when I first joined this board I was adamant that I
   should stay on 800 mg and bantered with someone about it. In
   the end, they were right. It is not worth the damage to your
   quality of life.
   Be safe and be blessed.
   Sincerely,
   Matt
   Zero Club #1078
   Jacksonville, Florida
   Dx January of 2005
   Gleevec since March of 2005
   Treated at MD Anderson
   Father of 3
   In a message dated 7/26/2007 3:28:27 P.M. Eastern Standard Time,
   vegasrnjen@... writes:
   Thanks Matt.
   I am learning to listen to my body as I think "it" knows best. After
   getting the call yesterday that I have been approved through my insurance to
   do a
   stem cell harvest I think I have decided to stick out the 800mg through the
   stem cell harvest and then once that process is complete, I am going to go
   down to at least 600mg. I would love to get to 400mg. I have again every
   system imaginable as well as I saw the doctor today and started Zoloft (low
   dose)
   just to maybe help with the blues of not having a normal life right now and
   maybe helping me relieve some of the fatigue. I am hoping it works.
   I would love to reduce Gleevec and be able to run with my kids and work
   again. I would like to not have to dread taking a shower because I don't
   have
   the energy for it. I miss being able to do the small things in life, like
   work
   and shower.
   I am not sure what the "right" dose for me is and with my local doctor here,
   I don't feel he does either. Its like he leaves it up to me as what we need
   to do and I really need some help making this, very important decision. I
   don't want to do something to screw up my remission rate. I am not sure what
   the right answer is.
   Thanks for all the input. I read every email. This site as been wonderful
   to me.
   Jennifer 35
   CML 5/13/05
   Gleevec 800mg
   Wife and mother of 3 (11,8,6)
   ************************************** Get a sneak peek of the all-new AOL at
   http://discover.aol.com/memed/aolcom30tour

7. echo_11 on 2008-11-24 20:57:15.771636

   Jen--
   Have you seen Dr. Druker or another specialist? My husband and I just got
   back this weekend from spending a couple days up in Portland, OR, and
   getting to see Dr. Druker. Wow, what an experience--a wealth of knowledge
   and just a super amazing man. Our insurance would not cover the cost, but if
   there is any way at all that you can afford to go (if your insurance wont
   cover it either), I would highly suggest it. It felt as though we had a 2
   hour class from the "father of CML" himself, but tailored exactly to Joel
   and Joel's numbers, etc.
   I was just wondering if you have seen a specialist?
   Take care and good luck, and you are in my thoughts and prayers...
   Regards,
   Wendy Cervera

8. tameka1700 on 2008-11-25 23:31:20.832055

   Hi Wendy,
   I was just thinking the other day "I wonder if Joel and Wendy saw Dr.
   Druker yet". I'm glad to hear that your consult went well. What did
   he say about the 100mg vs 140mg Sprycel debate?
   Take care,
   Tracey

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