Hi Malcolm,
My name is Penny and I was diagnosed 26/03/2003, wow can't believe it has been 2 years now. I have twin girls who were 12 at the time when I was diagnosed and we told them basically everything from the start. When I went for my check up my white counts were high and we still didn't know what it was but my doctor wanted me to check further. I live in the Cayman Islands so we had to travel to Houston (MD Anderson). We explained to them what it could be but we were going to fnid out definitely. The twins were great. They didnt' ask to many questions though, in their minds "mommy can't get sick and she was going to be all right". When we got to Houston, they actually were with us when the doctor talked to us and explained to us the options if I had acute or chronic. Again the girls were very positive that i was going to be fine. She explained to them that with acute i would have to stay in Houston for treatment whereas chronic i
could go home and take Gleevec and will be fine. She explained relapses but even at that time there was so many new drugs coming out. I was very lucky I had chronic, I have been on 800mg of GLevec since and was in complete remission 3 months after treatment. Be prepared for them to ask "are you going to be okay"? I would explain to them how you are doing on Gleevec which you have been taking for a year and doing well. Explain to them other medications that are out if Gleevec stops working for you. Every day there is something new coming out which is keeping us all alive until hopefully a cure will be found. You can also say how well you have been doing and maybe take them with you when you get your check up and let the doctor know you are bringing them and they can explain to them also. My doctor at MD ANderson has been great from the beginning. I haven't been posting for a while for we have been putting our house back together from
last year's storm Hurricane Ivan, but I have been on today trying to look at old messages and seen yours and thought you went through what we went through with our children.
You will be find!!! Where do you go for your treatment?
Take care and if there is anything else please email again!!!
Penny
Malcolm Somerston <[EMAIL PROTECTED]> wrote:
Malcolm Somerston <[EMAIL PROTECTED]> wrote:
From Malcolm
I was dx 7.7.04 and have been on 400mg Gleevec since dx. My response is excellent, my blood counts falling to normal within weeks of dx on Gleevec, and I hope my latest Bone Marrow test (results due soon) may been unable to detect any signs under PCR. My children are 13 & 11 and a year on from dx, I now want to tell them. Has anyone prepared a question and answer list or any advice on the types of questions they will ask?
-----Original Message-----
From: [email protected] [mailto:[EMAIL PROTECTED]
Sent: 12 June 2005 14:53
To: [email protected]
Subject: [CML] Digest Number 4021
There are 15 messages in this issue.
Topics in this digest:
1. Re: what does it all mean ????
From: char fisher <[EMAIL PROTECTED]>
2. Hematological malignancies: evolving the lifeblood of future pharmacotherapy
From: "Rob" <[EMAIL PROTECTED]>
3. Relay participants walk to raise $115,000
From: "Rob" <[EMAIL PROTECTED]>
4. The Crystal Structure of a c-Src Complex in an Active Conformation Suggests Possible Steps in c-Src Activation
From: "Rob" <[EMAIL PROTECTED]>
5. Rapid computational identification of the targets of protein kinase inhibitors
From: "Rob" <[EMAIL PROTECTED]>
6. Monitoring bcr/abl mRNA levels in imatinib mesylate treated chronic myeloid leukemia patients by real-time quantitative RT-PCR.
From: "Rob" <[EMAIL PROTECTED]>
7. Clonal evolution of abnormal Philadelphia chromosome-negative cells after imatinib mesylate therapy in patients with Philadelphi
From: "Rob" <[EMAIL PROTECTED]>
8. Study on the role of angiogenesis and related factors in leukemias
From: "Rob" <[EMAIL PROTECTED]>
9. Elimination of imatinib mesylate and its metabolite N-desmethyl-imatinib
From: "Rob" <[EMAIL PROTECTED]>
10. Can nifedipine and estrogen interaction with imatinib be responsible for gallbladder stone development?
From: "Rob" <[EMAIL PROTECTED]>
11. Quinone oxidoreductases in protection against myelogenous hyperplasia and benzene toxicity
From: "Rob" <[EMAIL PROTECTED]>
12. Disease burden may identify patients more likely to benefit from second allogeneic hematopoietic stem cell transplantation to treat relapsed acute myelogenous leukemia.
From: "Rob" <[EMAIL PROTECTED]>
13. CML and Prostate Cancer
From: Richard Troxel <[EMAIL PROTECTED]>
14. Pic Of The Day | June 12, 2005
From: "Rob" <[EMAIL PROTECTED]>
15. Daily Quotation | June 12, 2005
From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]>
________________________________________________________________________
________________________________________________________________________
Message: 1
Date: Sat, 11 Jun 2005 11:29:41 -0700 (PDT)
From: char fisher <[EMAIL PROTECTED]>
Subject: Re: what does it all mean ????
Thank you rob :)
Ive been on 400mg for the last 6 months.
Char :) :) :)
Rob <[EMAIL PROTECTED]> wrote:
It can fluctuate. What dose have you been on?
Rob
----- Original Message -----
From: char fisher
To: cml group
Sent: Saturday, June 11, 2005 12:42 AM
Subject: [CML] what does it all mean ????
I got a call from my dr. today saying my fish went up. In Dec. when i first found out about the leukemia it was 96%, In March my FISH was 34% now its up to 45 %. I dont understand ???? Its been 6 months .... should I have a tolerence to gleevec this early ? Does this mean that when they up me to 800mg it may not hold long ??? Im so scared and confused.
Char :)
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[This message contained attachments]
________________________________________________________________________
________________________________________________________________________
Message: 2
Date: Sat, 11 Jun 2005 21:45:24 -0500
From: "Rob" <[EMAIL PROTECTED]>
Subject: Hematological malignancies: evolving the lifeblood of future pharmacotherapy
Hailed as a beacon for the future of cancer drug development when it was launched in May 2001, Novartis's Glivec has achieved a dominant position in the chronic myeloid leukemia (CML) market and garnered worldwide sales of $1.6billion in 2004. However, while Glivec remains the gold standard treatment for CML, the emergence of Glivec drug resistance has left a void in the market.
http://cmlsupport.blogspot.com/2005/06/hematological-malignancies-evolving.html
[This message contained attachments]
________________________________________________________________________
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Message: 3
Date: Sat, 11 Jun 2005 21:46:27 -0500
From: "Rob" <[EMAIL PROTECTED]>
Subject: Relay participants walk to raise $115,000
Participants in Lewisburg's movie-themed Relay For Life were following the yellow brick road to find a cure for cancer and reach their goal of raising $115,000.
Mark Speake and Jan Lewis, members of the Wizard of Oz team are participating in their third relay.
http://cmlsupport.blogspot.com/2005/06/relay-participants-walk-to-raise.html
[This message contained attachments]
________________________________________________________________________
________________________________________________________________________
Message: 4
Date: Sat, 11 Jun 2005 21:57:39 -0500
From: "Rob" <[EMAIL PROTECTED]>
Subject: The Crystal Structure of a c-Src Complex in an Active Conformation Suggests Possible Steps in c-Src Activation
The regulation of the activity of Abl and Src family tyrosine kinases is mediated by intramolecular interactions between the SH3, SH2, and kinase (SH1) domains. We have determined the crystal structure of an unphosphorylated form of c-Src in which the SH2 domain is not bound to the C-terminal tail. This results in an open structure where the kinase domain adopts an active conformation and the C terminus binds within a hydrophobic pocket in the C-terminal lobe.
http://cmlhope.com/?q=node/24
[This message contained attachments]
________________________________________________________________________
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Message: 5
Date: Sat, 11 Jun 2005 21:58:29 -0500
From: "Rob" <[EMAIL PROTECTED]>
Subject: Rapid computational identification of the targets of protein kinase inhibitors
We describe a method for rapidly computing the relative affinities of an inhibitor for all individual members of a family of homologous receptors. The approach, implemented in a new program, SCR, models inhibitor-receptor interactions in full atomic detail with an empirical energy function and includes an explicit account of flexibility in homology-modeled receptors through sampling of libraries of side chain rotamers. SCR's general utility was demonstrated by application to seven different protein kinase inhibitors: for each inhibitor, relative binding affinities with panels of approximately 20 protein kinases were computed and compared with experimental data.
http://cmlhope.com/?q=node/23
[This message contained attachments]
________________________________________________________________________
________________________________________________________________________
Message: 6
Date: Sat, 11 Jun 2005 21:59:24 -0500
From: "Rob" <[EMAIL PROTECTED]>
Subject: Monitoring bcr/abl mRNA levels in imatinib mesylate treated chronic myeloid leukemia patients by real-time quantitative RT-PCR.
To quantify bone marrow bcr/abl mRNA levels in imatinib mesylate treated Ph chromosome positive chronic myeloid leukemia (CML) patients. METHODS: Serial monitoring of bcr/abl mRNA levels by real-time quantitative RT-PCR technique (RQ-PCR) was performed in 34 cases (120 samples) of CML treated with imatinib mesylate. All the patients were IFNalpha based treatment failure before enrolled in this study and the percentage of Ph(+) bone marrow cells were over 95%.
http://cmlhope.com/?q=node/22
[This message contained attachments]
________________________________________________________________________
________________________________________________________________________
Message: 7
Date: Sat, 11 Jun 2005 22:00:08 -0500
From: "Rob" <[EMAIL PROTECTED]>
Subject: Clonal evolution of abnormal Philadelphia chromosome-negative cells after imatinib mesylate therapy in patients with Philadelphi
To investigate clonal evolution of abnormal Philadelphia chromosome-negative cells (Ph(-)CE) after imatinib mesylate therapy in patients with Philadelphia chromosome-positive chronic myelogenous leukemia (Ph(+)CML).
http://cmlhope.com/?q=node/21
[This message contained attachments]
________________________________________________________________________
________________________________________________________________________
Message: 8
Date: Sat, 11 Jun 2005 22:00:58 -0500
From: "Rob" <[EMAIL PROTECTED]>
Subject: Study on the role of angiogenesis and related factors in leukemias
OBJECTIVE: To observe the bone marrow angiogenesis in leukemis and evaluate the _expression_ and role of endostatin (ES), vascular endothelial growth factor (VEGF) and its receptor (VEGFR) in leukemia patients. METHODS: Bone marrow angiogenesis was assayed by vWF immunohistochemical method. The ES and VEGF concentrations in plasma were detected by ELISA. The _expression_ of VEGFR in leukemia cells was determined by flow cytometry (FCM).
http://cmlhope.com/?q=node/20
[This message contained attachments]
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Message: 9
Date: Sat, 11 Jun 2005 22:04:37 -0500
From: "Rob" <[EMAIL PROTECTED]>
Subject: Elimination of imatinib mesylate and its metabolite N-desmethyl-imatinib
Bornh�user M, Pursche S, Bonin M, Freiberg-Richter J, Jenke A, Illmer T, Ehninger G, Schleyer E
J Clin Oncol. 2005 Jun 1; 23(16): 3855-6; author reply 3857-8
No abstract yet.
http://cmlsupport.blogspot.com/2005/06/elimination-of-imatinib-mesylate-and.html
[This message contained attachments]
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Message: 10
Date: Sat, 11 Jun 2005 22:05:49 -0500
From: "Rob" <[EMAIL PROTECTED]>
Subject: Can nifedipine and estrogen interaction with imatinib be responsible for gallbladder stone development?
Breccia M, D'Andrea M, Alimena G
Eur J Haematol. 2005 Jul ; 75(1): 89-90
No abstract yet.
http://cmlsupport.blogspot.com/2005/06/can-nifedipine-and-estrogen.html
[This message contained attachments]
________________________________________________________________________
________________________________________________________________________
Message: 11
Date: Sat, 11 Jun 2005 22:07:07 -0500
From: "Rob" <[EMAIL PROTECTED]>
Subject: Quinone oxidoreductases in protection against myelogenous hyperplasia and benzene toxicity
Quinone oxidoreductases (NQO1 and NQO2) are cytosolic proteins that catalyze metabolic reduction of quinones and its derivatives to protect cells against redox cycling and oxidative stress. In humans, a high percentage of individuals with myeloid and other types of leukemia are homo- and heterozygous for a null mutant allele of NQO1.
http://cmlsupport.blogspot.com/2005/06/quinone-oxidoreductases-in-protection.html
[This message contained attachments]
________________________________________________________________________
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Message: 12
Date: Sat, 11 Jun 2005 22:08:09 -0500
From: "Rob" <[EMAIL PROTECTED]>
Subject: Disease burden may identify patients more likely to benefit from second allogeneic hematopoietic stem cell transplantation to treat relapsed acute myelogenous leukemia.
The major cause of failure after allogeneic hematopoietic stem cell transplantation (HSCT) for acute myelogenous leukemia (AML) is disease relapse or progression. We analyzed the outcome of second HSCT for treatment of patients with relapsed, refractory AML/myelodysplastic syndrome (MDS) at our institution.
http://cmlsupport.blogspot.com/2005/06/disease-burden-may-identify-patients.html
[This message contained attachments]
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Message: 13
Date: Sat, 11 Jun 2005 20:15:10 -0700
From: Richard Troxel <[EMAIL PROTECTED]>
Subject: CML and Prostate Cancer
I have been diagnosed with prostate cancer as the result of a biopsy
taken a week ago. I'm 61 and was diagnosed with CML in 2/2003 and I've
been on IM since 3/2003. Currently I'm PCRU. Prostate cancer is a common
disease for men 60+ and is very successfully treated by any of a number
of options. My type of PC is not particularly aggressive so waiting a
few years would not ordinarily be out of the question. I do not believe
the CML and PC are related except that my CML does complicate the
decision process both from a personal and a medical standpoint.
Has anyone had experience with both CML and PC? Does anyone know if
radiation therapy and or hormone therapy would have an impact on my CML?
My wife thinks that If I opt for surgery (complete removal of the
prostate) that I should do so now while I am doing well with the CML
rather than wait and risk having both CML and PC crises to deal with.
Any thoughts?
I see my CML oncologist this week and the radiation doctors next week to
get their input. Would be great to have some really good questions to
put to them.
Richard Troxel
________________________________________________________________________
________________________________________________________________________
Message: 14
Date: Sat, 11 Jun 2005 23:36:56 -0500
From: "Rob" <[EMAIL PROTECTED]>
Subject: Pic Of The Day | June 12, 2005
Rough surf pounds the beach of the Gulf of Mexico as Tropical Storm Arlene churns offshore near Seagrove Beach, Florida.
http://cmlsupport.blogspot.com/2005/06/pic-of-day_12.html
[This message contained attachments]
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Message: 15
Date: Sun, 12 Jun 2005 01:01:31 -0500
From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]>
Subject: Daily Quotation | June 12, 2005
June 12, 2005
Nothing is as dangerous as an ignorant friend; a wise enemy is to be prefered.
Jean De La Fontaine
Fables
________________________________________________________________________
________________________________________________________________________
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