gt; paths
>
> Love and a big hug to all of you...
>
> With tears and 18's,
>
> Beth
>
>
> -Original Message-
> From: 'Jeanie' via CMLHope
> To: cmlhope
> Sent: Mon, Nov 12, 2018 8:26 am
> Subject: Re: [CMLHope] Update on Marty G
>
>
Dear Shaun and Family,
I am so sorry for your loss. He was truly an amazing person who inspired
and supported so many of us. His strength and courage held me up at times
he didn't even know about. He will be missed. Blessings and much love to
you and your family.
Best Regards
Tracie Mulvaney
On
a big hug to all of you...
With tears and 18's,
Beth
-Original Message-
From: 'Jeanie' via CMLHope
To: cmlhope
Sent: Mon, Nov 12, 2018 8:26 am
Subject: Re: [CMLHope] Update on Marty G
I am so shocked and upset as I read this. I have been waiting for an answer to
t;
>
>
>
> -Original Message-
> From: 'Jeanie' via CMLHope
> To: cmlhope
> Sent: Mon, Nov 12, 2018 9:26 am
> Subject: Re: [CMLHope] Update on Marty G
>
> I am so shocked and upset as I read this. I have been waiting for an answer
> to a questio
MLHope
To: cmlhope
Sent: Mon, Nov 12, 2018 9:26 am
Subject: Re: [CMLHope] Update on Marty G
I am so shocked and upset as I read this. I have been waiting for an answer to
a question I had about my thyroid and since he didn’t answer I knew something
was wrong.
He was a true fighter and kept
I am so shocked and upset as I read this. I have been waiting for an answer to
a question I had about my thyroid and since he didn’t answer I knew something
was wrong.
He was a true fighter and kept us going in our horrible journey with leukemia.
He must have been in a lot of pain to give up.
Dear Shelly and Family,
My deepest condolences on Marty’s passing. As so many of us in the group have
expressed, Marty was our head cheerleader, a constant source of inspiration,
support and love. He gave us a roadmap to navigate not only our illness but,
more importantly, our lives. And he sha
Dear Shaun and family,Would like to comfort you as your dad so often comforted each one of us. No words except what a marvelous, godly and extravagant legacy he left for you. He left it for the cml group as well! The time spent with each of us was his ministry of joy over us all. He will surely be
gt; David (greenie) Greenberg
>
>
> -Original Message-
> From: Marty Gartenberg
> To: CMLHope
> Sent: Sun, Nov 11, 2018 1:54 am
> Subject: [CMLHope] Update on Marty G
>
> Hello everyone -
>
> This is Marty Gartenberg's son, Shaun. It is with great sadness for m
Shaun;
I am so very sorry to hear about your Dad. Marty was an inspiration to
everyone and a real fighter, not just for himself, but for everyone.
I wish you and Marty’s rest of the family, many 18’s, as Marty would wish that
to everyone else. Even though he has passed on, his help and love w
: Sun, Nov 11, 2018 1:54 am
Subject: [CMLHope] Update on Marty G
Hello everyone -
This is Marty Gartenberg's son, Shaun. It is with great sadness for me to say
that my father passed away this past week, on Wednesday, November 7th, after
having entered hospice care the previous Friday, No
Hello everyone -
This is Marty Gartenberg's son, Shaun. It is with great sadness for me to
say that my father passed away this past week, on Wednesday, November 7th,
after having entered hospice care the previous Friday, November 2nd. I
know many of you were good friends with him and that he hel
That is what Hydrea does it drops your counts but I am surprised that it
didn't drop your platelets. Remember what I said about how Hydrea works.
What you take today will start to work in about a week or so. Why don't you
wait and see if it drops your platelets.
18's,
Marty
On Sat, Jan 31, 2015
They took me off hydrea Marty. I am now on new drug, ponatinib.It
brought my WBC down but not the platelets.
I think they will add a drug if they are not down Monday.
You are so right--it's in God's hands now. I've trusted Him since I was a
little girl and I sure won't stop now.
Tha
gt;>>>>> That is lots of hugs.
>
> Blessings and 18,
> Susan
>
> -Original Message-
> From: Myvety2k via CMLHope
> To: cmlhope
> Sent: Fri, Jan 30, 2015 1:22 pm
> Subject: Re: [CMLHope] Update Jeanie's blood counts
>
> Hi Jeanie, I'm sure
7;s my only way.<<<<<<>>>>>>> That is lots of
hugs.
Blessings and 18,
Susan
-Original Message-
From: Myvety2k via CMLHope
To: cmlhope
Sent: Fri, Jan 30, 2015 1:22 pm
Subject: Re: [CMLHope] Update Jeanie's blood counts
Hi Jeanie, I'
Hi Jeanie,
That's right it is in the millions. Allopurinol is not what will bring this
down it is Hydrea that will do that. Don't worry this will all work out. I
remember whenever I took a blood test I used to sweat until I got the
results and when I finally got the results back I just had to deal
Oh sorry Marty
They are listed as
C1535 k/ul
Since he told me they were in the millions I assume this is millions.
I hope the new med starts bringing them down.
He lowered my allopurinol to 100 mgs daily.
How are you?
Prayers & Blessings Jeanie 18's 🐠🐠
> On Jan 30, 2015, at 3:02 PM, Marty
Hi Jeanie,
Could you clarify something? Your platelets are ??? by chance did you leave
out the period?
Your Creation is very good, I wish that mine were that low. Mine was at the
last count 9.8. That is why I am on dialysis.
By the way, the rest of your counts are really not all that bad.
18's,
Thanks for the uplift Greenie. I've got to go back Monday to get it checked
again.
Yes I hanging in there and good luck to you too!
Prayers & Blessings Jeanie 18's 🐠🐠
> On Jan 30, 2015, at 1:22 PM, Myvety2k via CMLHope
> wrote:
>
> Hi Jeanie, I'm sure that after a period of time the count
Hi Jeanie, I'm sure that after a period of time the count will get better.
I wish I had your creatine mine is always between 1.3 to 1.56. Hang in
their things Will Work Out for you. I'll be thinking of you.
greenie
In a message dated 1/30/2015 12:38:37 P.M. Eastern Standard Time,
cml
Hi all,
The following counts were all high on latest blood test:
RDW 62.5
Platelet counts 1535
Basophils Auto 0.30 k/ul
Immature Gran Auto 0.34 k/ul
Potassium 5.6
Bun 25 mg/dl
Creatine 1.1
Prayers & Blessings Jeanie 18's 🐠🐠
> On Jan 30, 2015, at 8:00 AM, Icandoallttc wrote:
>
> Kk Greenie.
>
Hi Jeanie,
Probably the reason that your spleen is not being effected is because since
your on a TKI it is keeping your white blood cells down. When your spleen
swells and aches it is because the immature white blood cells collect in
your spleen. Leukemia is an over production of white blood cells
Hi Marty
For some reason even with all these high counts, my spleen hasn't been
affected. My doctor wants a cat scan once a year to check.
You sure went through a lot warrior!!!
I am supposed to get one the 12th if Feb but I have to see if I can drink all
that liquid they want you to down.
H
Hi Jeanie,
I had to have my spleen removed because it was so enlarged and it kept on
aching. The doctors usually check your spleen when you have CML but you
will know yourself if it starts becoming enlarged and especially aching.
However once your on a TKI it shouldn't become enlarged. The spleen
Thanks Marty
I have not heard of many with platelets in the millions. The doctor lowered my
hydrea and I think that was the problem. Yes hit and miss and guessing game.
I didn't know you had your spleen removed. He is always checking mine.
How much Allopurinol do you take daily?
I'm glad J
Hi, yes I once had my platelet count in the millions, but that was a very
long time ago when things were so much different from what they are now. I
was started on both Hydrea and Allopurinol and it took about a month to
get my platelets down, but so did my red and white counts come down as
well.
Hi Joyce and all,
I took my second dose this morning--so far so good.
I was a little worried because my dr only ordered enough for 2 pills a day
and now he is telling me to take 3 pills a day. I don't know how the
reordering works as I have never had this drug before.
It seems I am in the acce
without
medicine. I'm also hoping they get that vaccination perfected and out of
trial
stage very, very soon.
Merry again,
Susan
-Original Message-
From: Richard H
To: cmlhope
Sent: Tue, Dec 17, 2013 12:15 am
Subject: [CMLHope] Update.
I saw my ONC today for my
regards, Beth
-Original Message-
From: Susan Zimmerman
To: cmlhope
Sent: Tue, Dec 17, 2013 7:34 am
Subject: Re: [CMLHope] Update.
So sorry to hear this, Richard. My numbers were quite a bit higher than yours,
and I'm still without meds. I know I need to be careful, so wil
and out of trial stage very, very
soon.
Merry again,
Susan
-Original Message-
From: Richard H
To: cmlhope
Sent: Tue, Dec 17, 2013 12:15 am
Subject: [CMLHope] Update.
I saw my ONC today for my results. The news was not what I wanted to hear. My
test broke our test level max of .
I saw my ONC today for my results. The news was not what I wanted to hear.
My test broke our test level max of .10. I wll go back in March to redo
the test and we will decide which protocol we will try. He is looking at 2
that are looking like a better treatment for me because of my problems
To: CMLHope
Sent: Wed, Mar 13, 2013 3:56 pm
Subject: [CMLHope] Update on CML Treatments
Hi all - Dr. Jorge Cortes, one of the world's foremost CML experts,
iscusses new treatment options for CML and his thoughts about future
irections in a new article for a physician publication from MD
nd
Hi all - Dr. Jorge Cortes, one of the world's foremost CML experts,
discusses new treatment options for CML and his thoughts about future
directions in a new article for a physician publication from MD
Anderson Cancer Center which is focused on current research and
patient care advances.
Regards,
I was diagnosed September 1, 2011 and I take 40o mg of Gleevec. I'm doing
great and am so thankful for this medication. Its great to hear so many
people who are in remission. God's speed to all!
Tracie
On Thu, Nov 8, 2012 at 12:00 PM, Suzieq wrote:
> I haven't had one since July 10th of 2005
I haven't had one since July 10th of 2005 once becoming a patient of Dr.
Cashen, but I always loved him. He was funny and put you at ease. And, I
hardly ever felt a thing except the pressure when he did the BMB.
My appointment is coming up on the day before Thanksgiving, Holly. I'm
glad to
I also loved Tim. I have very dense bones (a good thing) and Tim was the only
one who could do those awful bmbs with little pain.
Sent from my iPhone
On Nov 5, 2012, at 12:22 PM, Suzieq wrote:
> @Holly:
>
> I have been going to Siteman since March 2004. I had Dr. Khoury for the first
> 6 mo
Hi SusieQ, I think we have had the same experiences with CML. I too was
told by my PCD that my WBC and Platelets were way up, and he immediately
made an appointment for me for a Hem/Onc. He did the BMA right in his office,
no pain killers at all, and as the hospital was right across the st
kk
In a message dated 11/4/2012 6:43:05 P.M. Eastern Standard Time,
dstuede...@aol.com writes:
Sorry I have been in remission since March 2000 Jim S.
In a message dated 11/4/2012 4:37:48 P.M. Mountain Standard Time,
dstuede...@aol.com writes:
Yes since March 2002
In a message dat
Great news! Jeanie<3
In a message dated 11/4/2012 6:37:23 P.M. Eastern Standard Time,
dstuede...@aol.com writes:
Yes since March 2002
In a message dated 11/4/2012 2:36:21 P.M. Mountain Standard Time,
icandoall...@aol.com writes:
Thanks JIM, glad you are doing good. Are you in remissi
@Holly:
I have been going to Siteman since March 2004. I had Dr. Khoury for the
first 6 months and then had Dr. Vij. After my third visit with him, I was
told that I was not "sick" enough for him, that he only saw the ones who
were worse so I was then passed on to Dr. Thomasson. I loved him,
I too am a patient at siteman with both dr. Khoury and Cashen. I was diagnosed
in the emergency room with a 390,000 WBC. Wonderful dr. Khoury gave me a chance
2 b in the first gleevec study bcaus of my er stats that he looked at 9 months
later. Thank God for the last 11 years at Siteman.
Sent
I will be the same as you, Ms. Jeanie! My Mom always reminds me I called
her on her birthday, Feb. 6th, 2004 and told her about the dx'es. I don't
remember the exact date, but that's probably right. I started going to the
doctor for the pain in my side about the 2nd week of January. Was tre
Sorry I have been in remission since March 2000 Jim S.
In a message dated 11/4/2012 4:37:48 P.M. Mountain Standard Time,
dstuede...@aol.com writes:
Yes since March 2002
In a message dated 11/4/2012 2:36:21 P.M. Mountain Standard Time,
icandoall...@aol.com writes:
Thanks JIM, glad you
Yes since March 2002
In a message dated 11/4/2012 2:36:21 P.M. Mountain Standard Time,
icandoall...@aol.com writes:
Thanks JIM, glad you are doing good. Are you in remission?
Jeanie<3
In a message dated 11/1/2012 11:46:47 A.M. Eastern Standard Time,
dstuede...@aol.com writes:
I was o
Thanks JIM, glad you are doing good. Are you in remission?
Jeanie<3
In a message dated 11/1/2012 11:46:47 A.M. Eastern Standard Time,
dstuede...@aol.com writes:
I was on the trial starting Jan. 2nd. 2000. Been on gleevec from the
beginning. Jim S.
In a message dated 11/1/2012 7:40
Thankful and blessed!
- Original Message -
From: robert goodrich
Sent: 11/02/12 04:30 PM
To: cmlhope@googlegroups.com
Subject: Re: [CMLHope] update on how many years we have been fighting CML
january of 2000, interferon for 17 months, then on gleevec for the rest of
the w
From: "_ICANDOALLTTC@aol.com_ (mailto:icandoall...@aol.com) "
<_ICANDOALLTTC@aol.com_ (mailto:icandoall...@aol.com) >
To: _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com)
Sent: Thursday, November 1, 2012 9:40 AM
Subject: [CMLHope] update on how many years w
rom: "icandoall...@aol.com"
To: cmlhope@googlegroups.com
Sent: Thursday, November 1, 2012 9:40 AM
Subject: [CMLHope] update on how many years we have been fighting CML
Yahooo Jan will be my 9th year of my fight against CML.
5 Years on Gleevec
Few Months On Tasigna
Almo
n Daylight Time,
cinem...@yahoo.com writes:
january of 2000, interferon for 17 months, then on gleevec for the rest of
the way,am in and still holding on full remission.
From: "icandoall...@aol.com"
To: cmlhope@googlegroups.com
Sent: Thursday, November 1, 2012 9:40
DX Aug. 1997, interferon and cytarabine for a year, Gleevec Phase 1 trial at
UCLA, April 1999, holding in CMR. Thankful and blessed!
- Original Message -
From: robert goodrich
Sent: 11/02/12 04:30 PM
To: cmlhope@googlegroups.com
Subject: Re: [CMLHope] update on how many years we have
m"
> To: cmlhope@googlegroups.com
> Sent: Thursday, November 1, 2012 9:40 AM
> Subject: [CMLHope] update on how many years we have been fighting CML
>
> Yahooo Jan will be my 9th year of my fight against CML.
> 5 Years on Gleevec
> Few Months On Tasigna
>
january of 2000, interferon for 17 months, then on gleevec for the rest of the
way,am in and still holding on full remission.
From: "icandoall...@aol.com"
To: cmlhope@googlegroups.com
Sent: Thursday, November 1, 2012 9:40 AM
Subject: [CMLHope]
From: "dstuede...@aol.com"
To: cmlhope@googlegroups.com
Sent: Thursday, November 1, 2012 12:46:45 PM
Subject: Re: [CMLHope] update on how many years we have been fighting CML
I was on the trial starting Jan. 2nd. 2000. Been on gleevec from the
beginning. Jim
I was on the trial starting Jan. 2nd. 2000. Been on gleevec from the
beginning. Jim S.
In a message dated 11/1/2012 7:40:43 A.M. Mountain Daylight Time,
icandoall...@aol.com writes:
Yahooo Jan will be my 9th year of my fight against CML.
5 Years on Gleevec
Few Mont
Yahooo Jan will be my 9th year of my fight against CML.
5 Years on Gleevec
Few Months On Tasigna
Almost 4 Years On Sprycel
Miracles do happen.
Jeanie<3
Would like to hear from everyone on their years on certain CML Drugs?
In a message dated 10/27/2012 5:46:44 P.M. Eastern D
Dear Richard,
What do notations "Transfusions Dec. 06-May 07 & Transfusions 6/08-11/08"
mean?
God Bless,
Sandy
From: Richard H
To: CMLHope
Sent: Sun, January 24, 2010 12:36:12 AM
Subject: [CMLHope] Update
I just received the results of
Hi Lori,
Thank you for e-mail, which gives hope for me, because my doctors also told
me that I will not be able to have new babies, It make me sad a little, but
in the other hand I found this part of the test I am going through in this
life.
I was in remission since Nov 2009, and still on Gleevec
I've been told Sprycel can cause edema of the lungs.
Keep a close check on your lungs.
You may need a lung xray.
Good luck
Jeanie<3
In a message dated 1/24/2010 5:26:40 P.M. Pacific Standard Time,
maggy...@bellsouth.net writes:
For those of you on Sprycel have you experienced severe shortne
...@comcast.net
Subject: Re: [CMLHope] Update
To: cmlhope@googlegroups.com
Date: Sunday, January 24, 2010, 10:53 AM
#yiv529189282 p {margin:0;}
Sorry Richard...I had a Sprycel moment...the name thing happens A LOT to me,
just one of those crazy side effects or maybe early Alzheimers.
Lenda
- Original
/Canada Central
Subject: Re: [CMLHope] Update
Danial,
Just wanted to change a typo I made. My bcr-abl is .001 not 00.1. Barely
traceable...my doctor says you can't get much better than .001
Lenda
- Original Message -
From: lblaine...@comcast.net
To: cmlhope@googlegroups.com
06:00 US/Canada Central
Subject: Re: [CMLHope] Update
Richard,
The same thing happened to me and my onc immediately put me on Sprycel
(dasatinib) 140 mg. The 140mg was too much for me. It gave me horrible
headaches, so they lowered the dosage to 100mg and my bcr-abl has remained at
00.1
it's side effects,
but they were easier on me than the Gleevec.
Good luck and I hope your doc does not wait too long to switch you.
Lenda
- Original Message -
From: "Richard H"
To: "CMLHope"
Sent: Saturday, January 23, 2010 11:36:12 PM GMT -06:00 US/Canada C
I just received the results of my Dec. QT-PCR test. It shows that my
BCR-ABL counts continue to slowly rise. We are now trying to decide
at what point I will resume Gleevec. My ONC is treating other CML
patients with various other protocols. He is seeing good results with
all and thinks that si
Hi Everyone,
It has been a very long time since I posted. For those who don¹t know me and
all the rest, I will bring you up to date. I am somewhere between #149 and
#156 in Zavie¹s club.
I was dx in 1999 and put on interferon and ARAC. I had bad reactions and
joined the intolerant STI571 trial at
Hello all once again,
just an update on my ongoing battle with my CML and the drugs to combat it.
After my last hospital stay, I was told not to use dasatinib any more.
They had to tap me and remove all the pleural infusion build up caused by
dasatinib.
They removed 8.5 500ML bottles of liquid,ov
Hi Nancy,
I had my transfusion yesterday.
It took 8 hours to get 2 pints of blood.
It wasn't bad; they put me in a cubicle with a nice bed, and I could order
anything I wanted to eat; the problem was that I was also getting a ct scan
and I had to drink this large bottle of barium, and I could
Sorry I am only on once in a great while. We have had a HOUSEFUL of
company for a week and I have been trying to deal with Jim's increase
in counts. I do appreciate all the emails and suggestions and prayers
from all of you.
The nurse practioner called yesterday and really explained everything
t
Hello to all:
I just wanted to let everyone know about little Bethany's MRI & her
prognosis. They put her to sleep while doing the MRI last week & she
came through all the testing with flying colors.
She has a tumor about the size of a half of Dollar smack dab in the
midst of the optical nerves
Hi all, just returned from my visit with my ONC to evaluate my 3 month
vacation from Gleevec. My my Q-PCR just before I went off Gleevec
showed my BCR-ABL at .001 and the new one 3 weeks ago was .001. I
have not had a transfusion since May 13 and my RBC has increased from
8.2 to 11.4. My energy
I know you haven't seen much of me lately.but I've been
running. Had to take husband to ER late
yesterday afternoon & they decided to keep him. He finally was put in
a room around ten PM & I was able to leave and come home. They found
three blood clots in his lungs..two in each low
Hi Group,
For those that have followed our Jonathan, I thought I would share our
good news.
Doc has finally agreed to lower Jon's dosage of Gleevec from 600mg to
400mg.
It has been 4 wks now and we are going back every 2 weeks for counts
and PCR.
Jon is holding. We have written back and forth a f
Hey everybody,
Just thought I would tell you that we finally found a place to move too.
It is about 117 dollars cheaper then our house payment and the utilities should
be about half what they are here so we should do okay. I dont understand how I
feel though, I should be excited I guess, at
Hey Anjana,
My onc recently got me an echocardiogram to check for Gleevec heart
damage & establish a baseline. Everything is fine. I also remain FISH
negative, and my CLL is still only a conceptual reality, as a
chromosomal aberration.
We recently moved to a house in Empire, Michigan. It is a
Hello allhave not posted much lately, but I do read the digests
every day.
I just got the results from a recent Bone Marrow Biopsy today.
Chimerism/DNA test showed 100% donor.
Molecular/PCR test from bone marrow: negative
The post-transplant microsatellite polymorphism pattern is identical t
Hi everyone,
it's been sometime since I've posted but wanted to get some opinions.
We went to see our oncologist at Sloane in NY today and received mixed
news.
Vanessa's standard cytogenic test and Fish is absent of any
Philadelphia chromosome. She was 100% +ve at diagnosis. This is after 4
months
Hi al,
I am getting ready to head back to Indiana so I should be home in a few hours. I will try and get on and let you know when the eagle has landed when I get there, or at least in the morning. Take care,
Terry-- "There is nothing ever wrong..butnothing's ever right..such a cruel contradiction
Hi all,
I just wanted to give everyone an update on some things since my last post about how my situation has changed. First off, Regina is being great and being very nice, so if I gave the impression she was mental, she is not, and in fact has been making things allot easier on us both. Our breaku
We just came home from the hospital. Thank you for all the responses
that were posted on Jon's bone growth delay. Jon had his hardware
removed from his hip this Thurs.
His orthopedic took the time to look at Jon's density tests. When I
told him what his oncologist said about the tests he had
Howdy! I have been SO exhausted that I just haven't been on the
computer much to write & update folks on Terry's condition.
Terry did return to work last week, and with taking Synthroid, for his non
functioning thyroid and he seems to be much better ...more physically active
& social.
well, all I can say is that we have gone through severe ups &
downs.
a bmb in early Novresults weren't totally upsetting or
surprising...basically, still Phila chromosomes to contend with...Terry then
was then upped to 800mg on Gleevec for over 2 months.another blood workup in
81 matches
Mail list logo
