RE: Blast Crisis

[Guest guest]

Hi :

 

I was diagnosised with CML in April 05.  Failed Gleevec Therapy  and started

Sprycel in Nov. 06, I was on sprycel until I went to transplant Feb. 07.  Wow, I

am a single mom also and have teenagers.  It is such a load to deal with.  My

finances were not in order to take time off to transplant.  It came down to do I

want to live or die from CML.  They found my donor in Europe since none of my

family matched.  I went through with the transplant and I am coming out on the

other side.  It is not impossible but the road is difficult and you have to be

ready to really fight for your life. 

 

Hopefully, you have health insurance to help with the medical finances.  The

transplant facility should have financial advisiors to help put the rest of the

pieces together.  I still owe money but I am not basing my value in life on my

debt owed.  Money is a renewable resource, your health is not.  I really wanted

to see my youngest graduate High School.  She is a senior this year and I think

I will achieve that goal.

 

Keep in mind that the transplant and recovery time are two different things

altogether.  Even after the cells come in you will have to deal with being on

lots of medication and a brand new immune system that is weak.  GvHD is another

hurdle to be faced.  I finally cleared my transplant team and I am back seeing

my Oncologist on August 16th, 2008.  It has taken a year and a half to get off

the transplant medications and I just started back to work two weeks ago.  In

between recieving the transplant and now, I have dealt with Gvhd, Gallbladder

failure, RSV, Lung Infections, and MRSA, and constant issues of being around

people due to the baby immune system I now have.  Everyone has a different

experience with transplant and the time frames are not set in stone. 

 

I will tell you that through it all, I tried to distance my teenagers from the

transplant and make their lives normal.  That was a mistake.  Bring your kids to

the table get the family involved with the whole process.  My kids told me they

felt left out and scared.  I was just trying to spare them.  I would do it

differently if I had to do this again.

 

It is a hard decision and unfortunately the time your given to decide is short. 

I wish you the best for you and your family, if you want to contact me

personally, my email is kidme2003@....

 

Therese 

 

 

From: dmarie1958 <dmarie1958@...>

Subject: [ ] Blast Crisis

Date: Friday, September 5, 2008, 11:18 AM

Hi all,

I was diagnosed in May 07 and put on Gleevec, 400mg until May of 08.

My pcr was slowing going up so my doctor raised me to 600mg of G.

After 2 1/2 months on 600mg, my blood counts started to drop, so he

took me off G for two weeks before wanting to start me on Sprycel.

During that two week period, my blood work went crazy and I was

diagnosed as being in blast crisis. I was seen last Tuesday on an

emergency basis at U of M. We are going to continue with the Sprycel

to try to get me into remission so I can get a bone marrow

transplant. If the Sprycel doesn't work, there are a couple

medications they will try and if that doesn't work, I will be

hospitalized for 30-75 days of chemo to get me to remission.

Well, you can imagine how my world has been turned upside down. I am

a teacher and was planning on returning to work this week. I am a

single mom of two teenagers very active in fall sports. Also, with

today's econonmy, my finances are a huge concern. My 74 year old

father has really stepped up to the plate as a wonderful caregiver,

taking me to appts, etc.

I guess what I am looking for is some others of us CMLer's who have

experience anything like this. Others who can share their

experiences, symptons, treatment etc.

My current symptons are extreme fatigue and headaches. I have no

idea what to be watching for, just somewhat dependent on lab work to

let me know how things are going. My hemoglobin has dropped to 8.0.

Nothing has been prescribed or done about that, which concerns me.

So please, anyone out there who has been in or is in blast crisis,

please share your experiences with me.

Sincerely,

[Guest guest]

Hi ,

My husband had a very similar situation to yours. He started on

Gleevec, then went to Sprycel. His counts would not recover so he was

scheduled for a bone marrow transplant. While he was waiting for the

transplant he went into blast crisis. He recieved two rounds of chemo

and one of radiation before his transplant. He relapsed again 2 months

after the transplant and went into blast crisis again. He got a second

transplant after two rounds of chemo and was on nilotinib during the

chemo and after. Unfortunately he relapsed again and is currently

still has 40% blasts in the marrow (last time it was checked) He is

now on 1200 mg of nilotinib and interferon to try and slow the

progression. If you are interested in our whole story our blog is

www.camcor.vox.com

I don't tell you this to scare you but just to share and let you know

you are not alone. My husband is a teacher as well.

Please ask your doctor about going on a high dose of Sprycel to get

rid of the blasts. They are very difficult to over come so an

aggressive approach needs to be taken.

Make sure you get a bone marrow biopsy and aspirate after each round

of pre-transplant chemo to make sure you are making headway with the

blasts. The blood counts don't tell the whole story. Have your doctor

look into keeping you on a TKI such as Sprycel during the chemo and

transplant process. I know this has been done very rarely. I think my

husband was the first one in Canada to try it. His doc wasn't sure

about toxcities but he had no other option so we tried it. It worked

fine as far as side effects go.

I know exactly how you feel. It seems like the world as you know it

has been ripped from under you. In the last six months my husband was

hospitalized for 140 days. It has been a blur but we are still here. I

noticed you said your hemoglobin has dropped to 8.0 You need to ask

for a transfusion. You will feel a lot better afterward. Make sure

your platelets stay at appropriate levels as well. Avoid getting

infections. Stay away from sick people and crowds. Find the best

specialist you possibly can-- your life and well being depends on it.

If you don't like what your doc tell you go to another one.

I wish the very best of outcomes for you. If you would like to email

me privately with more questions my email is coralee.williams@...

Keep the faith. Tell yourself that you can get through this and

you can. We all have amazing amounts of inner strength when we dig

deep enough. You can do it.

Coralee

Wife of Cam

Diagnosed June 06

1st transplant Feb 08

2nd transplant July 08

On Sep 5, 2008, at 9:18 AM, dmarie1958 wrote:

> Hi all,

> I was diagnosed in May 07 and put on Gleevec, 400mg until May of 08.

> My pcr was slowing going up so my doctor raised me to 600mg of G.

> After 2 1/2 months on 600mg, my blood counts started to drop, so he

> took me off G for two weeks before wanting to start me on Sprycel.

> During that two week period, my blood work went crazy and I was

> diagnosed as being in blast crisis. I was seen last Tuesday on an

> emergency basis at U of M. We are going to continue with the Sprycel

> to try to get me into remission so I can get a bone marrow

> transplant. If the Sprycel doesn't work, there are a couple

> medications they will try and if that doesn't work, I will be

> hospitalized for 30-75 days of chemo to get me to remission.

> Well, you can imagine how my world has been turned upside down. I am

> a teacher and was planning on returning to work this week. I am a

> single mom of two teenagers very active in fall sports. Also, with

> today's econonmy, my finances are a huge concern. My 74 year old

> father has really stepped up to the plate as a wonderful caregiver,

> taking me to appts, etc.

> I guess what I am looking for is some others of us CMLer's who have

> experience anything like this. Others who can share their

> experiences, symptons, treatment etc.

> My current symptons are extreme fatigue and headaches. I have no

> idea what to be watching for, just somewhat dependent on lab work to

> let me know how things are going. My hemoglobin has dropped to 8.0.

> Nothing has been prescribed or done about that, which concerns me.

> So please, anyone out there who has been in or is in blast crisis,

> please share your experiences with me.

> Sincerely,

>

>

>

>

This email has been scanned by Barracuda Network's Anti-Virus and Spam Firewall.

[Guest guest]

Hi ,

Cam has had a really rough CML road trip. His blog is

http://camcor.vox.com He has had 2 transplants in a 6 month period, and is

now doing a clinical trial with combo treatments.

-shalyn

From: [mailto: ] On Behalf Of

dmarie1958

Sent: September-05-08 8:19 AM

Subject: [ ] Blast Crisis

Hi all,

I was diagnosed in May 07 and put on Gleevec, 400mg until May of 08.

My pcr was slowing going up so my doctor raised me to 600mg of G.

After 2 1/2 months on 600mg, my blood counts started to drop, so he

took me off G for two weeks before wanting to start me on Sprycel.

During that two week period, my blood work went crazy and I was

diagnosed as being in blast crisis. I was seen last Tuesday on an

emergency basis at U of M. We are going to continue with the Sprycel

to try to get me into remission so I can get a bone marrow

transplant. If the Sprycel doesn't work, there are a couple

medications they will try and if that doesn't work, I will be

hospitalized for 30-75 days of chemo to get me to remission.

Well, you can imagine how my world has been turned upside down. I am

a teacher and was planning on returning to work this week. I am a

single mom of two teenagers very active in fall sports. Also, with

today's econonmy, my finances are a huge concern. My 74 year old

father has really stepped up to the plate as a wonderful caregiver,

taking me to appts, etc.

I guess what I am looking for is some others of us CMLer's who have

experience anything like this. Others who can share their

experiences, symptons, treatment etc.

My current symptons are extreme fatigue and headaches. I have no

idea what to be watching for, just somewhat dependent on lab work to

let me know how things are going. My hemoglobin has dropped to 8.0.

Nothing has been prescribed or done about that, which concerns me.

So please, anyone out there who has been in or is in blast crisis,

please share your experiences with me.

Sincerely,

[Guest guest]

Hi ,

I had sent you a blog address but would also like to write to you ...my

email is

Shalyn@...

Where are you located?

-

Shalyn

From: [mailto: ] On Behalf Of

dmarie1958

Sent: September-05-08 8:19 AM

Subject: [ ] Blast Crisis

Hi all,

I was diagnosed in May 07 and put on Gleevec, 400mg until May of 08.

My pcr was slowing going up so my doctor raised me to 600mg of G.

After 2 1/2 months on 600mg, my blood counts started to drop, so he

took me off G for two weeks before wanting to start me on Sprycel.

During that two week period, my blood work went crazy and I was

diagnosed as being in blast crisis. I was seen last Tuesday on an

emergency basis at U of M. We are going to continue with the Sprycel

to try to get me into remission so I can get a bone marrow

transplant. If the Sprycel doesn't work, there are a couple

medications they will try and if that doesn't work, I will be

hospitalized for 30-75 days of chemo to get me to remission.

Well, you can imagine how my world has been turned upside down. I am

a teacher and was planning on returning to work this week. I am a

single mom of two teenagers very active in fall sports. Also, with

today's econonmy, my finances are a huge concern. My 74 year old

father has really stepped up to the plate as a wonderful caregiver,

taking me to appts, etc.

I guess what I am looking for is some others of us CMLer's who have

experience anything like this. Others who can share their

experiences, symptons, treatment etc.

My current symptons are extreme fatigue and headaches. I have no

idea what to be watching for, just somewhat dependent on lab work to

let me know how things are going. My hemoglobin has dropped to 8.0.

Nothing has been prescribed or done about that, which concerns me.

So please, anyone out there who has been in or is in blast crisis,

please share your experiences with me.

Sincerely,

[Guest guest]

I also lost my response to Gleevec and was able to transfer to Sprycel and have

been pcru ever since. I don't know whether Sprycel could take you out of blast

crisis but perhaps it can. Did your doc say whether that could happen so you

could avoid a transplant? Does anyone else know?

L

[ ] Blast Crisis

Hi all,

I was diagnosed in May 07 and put on Gleevec, 400mg until May of 08.

My pcr was slowing going up so my doctor raised me to 600mg of G.

After 2 1/2 months on 600mg, my blood counts started to drop, so he

took me off G for two weeks before wanting to start me on Sprycel.

During that two week period, my blood work went crazy and I was

diagnosed as being in blast crisis. I was seen last Tuesday on an

emergency basis at U of M. We are going to continue with the Sprycel

to try to get me into remission so I can get a bone marrow

transplant. If the Sprycel doesn't work, there are a couple

medications they will try and if that doesn't work, I will be

hospitalized for 30-75 days of chemo to get me to remission.

Well, you can imagine how my world has been turned upside down. I am

a teacher and was planning on returning to work this week. I am a

single mom of two teenagers very active in fall sports. Also, with

today's econonmy, my finances are a huge concern. My 74 year old

father has really stepped up to the plate as a wonderful caregiver,

taking me to appts, etc.

I guess what I am looking for is some others of us CMLer's who have

experience anything like this. Others who can share their

experiences, symptons, treatment etc.

My current symptons are extreme fatigue and headaches. I have no

idea what to be watching for, just somewhat dependent on lab work to

let me know how things are going. My hemoglobin has dropped to 8.0.

Nothing has been prescribed or done about that, which concerns me.

So please, anyone out there who has been in or is in blast crisis,

please share your experiences with me.

Sincerely,

[Guest guest]

Sprycel took me out of the blast crisis I was given 6 mths that was april 2007.

i am in full remission

[ ] Blast Crisis

Hi all,

I was diagnosed in May 07 and put on Gleevec, 400mg until May of 08.

My pcr was slowing going up so my doctor raised me to 600mg of G.

After 2 1/2 months on 600mg, my blood counts started to drop, so he

took me off G for two weeks before wanting to start me on Sprycel.

During that two week period, my blood work went crazy and I was

diagnosed as being in blast crisis. I was seen last Tuesday on an

emergency basis at U of M. We are going to continue with the Sprycel

to try to get me into remission so I can get a bone marrow

transplant. If the Sprycel doesn't work, there are a couple

medications they will try and if that doesn't work, I will be

hospitalized for 30-75 days of chemo to get me to remission.

Well, you can imagine how my world has been turned upside down. I am

a teacher and was planning on returning to work this week. I am a

single mom of two teenagers very active in fall sports. Also, with

today's econonmy, my finances are a huge concern. My 74 year old

father has really stepped up to the plate as a wonderful caregiver,

taking me to appts, etc.

I guess what I am looking for is some others of us CMLer's who have

experience anything like this. Others who can share their

experiences, symptons, treatment etc.

My current symptons are extreme fatigue and headaches. I have no

idea what to be watching for, just somewhat dependent on lab work to

let me know how things are going. My hemoglobin has dropped to 8.0.

Nothing has been prescribed or done about that, which concerns me.

So please, anyone out there who has been in or is in blast crisis,

please share your experiences with me.

Sincerely,

[Guest guest]

Hi , i don't have any experience

the blast crisis, but i live in land if you would like to talk or

if i can do anything for you please don't hesitate to ask. I am

coming up on my 2 year anniversary my e-mail is snipandtip@...

do you live in land or are you just going to the U of M.

Esther

In , " dmarie1958 " <dmarie1958@...> wrote:

>

> Hi all,

> I was diagnosed in May 07 and put on Gleevec, 400mg until May of

08.

> My pcr was slowing going up so my doctor raised me to 600mg of G.

> After 2 1/2 months on 600mg, my blood counts started to drop, so he

> took me off G for two weeks before wanting to start me on Sprycel.

> During that two week period, my blood work went crazy and I was

> diagnosed as being in blast crisis. I was seen last Tuesday on an

> emergency basis at U of M. We are going to continue with the

Sprycel

> to try to get me into remission so I can get a bone marrow

> transplant. If the Sprycel doesn't work, there are a couple

> medications they will try and if that doesn't work, I will be

> hospitalized for 30-75 days of chemo to get me to remission.

> Well, you can imagine how my world has been turned upside down. I

am

> a teacher and was planning on returning to work this week. I am a

> single mom of two teenagers very active in fall sports. Also, with

> today's econonmy, my finances are a huge concern. My 74 year old

> father has really stepped up to the plate as a wonderful caregiver,

> taking me to appts, etc.

> I guess what I am looking for is some others of us CMLer's who have

> experience anything like this. Others who can share their

> experiences, symptons, treatment etc.

> My current symptons are extreme fatigue and headaches. I have no

> idea what to be watching for, just somewhat dependent on lab work

to

> let me know how things are going. My hemoglobin has dropped to

8.0.

> Nothing has been prescribed or done about that, which concerns me.

> So please, anyone out there who has been in or is in blast crisis,

> please share your experiences with me.

> Sincerely,

>

>

[Guest guest]

Hi Anita,

What a blessing to hear this news from you. I would be very

interested in hearing more about your journey and to talk with you

further. You can contact me at gstephens@.... We too

had Gleevec sub-optimal response and failure resulting in BC.

Greg

Carolyn s' son

dx Jan 05, BC#1 Dec 06, BC#2 April 07

>

> Sprycel took me out of the blast crisis I was given 6 mths that was

april 2007. i am in full remission

>

>

>

> [ ] Blast Crisis

>

> Hi all,

> I was diagnosed in May 07 and put on Gleevec, 400mg until May of

08.

> My pcr was slowing going up so my doctor raised me to 600mg of G.

> After 2 1/2 months on 600mg, my blood counts started to drop, so he

> took me off G for two weeks before wanting to start me on Sprycel.

> During that two week period, my blood work went crazy and I was

> diagnosed as being in blast crisis. I was seen last Tuesday on an

> emergency basis at U of M. We are going to continue with the

Sprycel

> to try to get me into remission so I can get a bone marrow

> transplant. If the Sprycel doesn't work, there are a couple

> medications they will try and if that doesn't work, I will be

> hospitalized for 30-75 days of chemo to get me to remission.

> Well, you can imagine how my world has been turned upside down. I

am

> a teacher and was planning on returning to work this week. I am a

> single mom of two teenagers very active in fall sports. Also, with

> today's econonmy, my finances are a huge concern. My 74 year old

> father has really stepped up to the plate as a wonderful caregiver,

> taking me to appts, etc.

> I guess what I am looking for is some others of us CMLer's who have

> experience anything like this. Others who can share their

> experiences, symptons, treatment etc.

> My current symptons are extreme fatigue and headaches. I have no

> idea what to be watching for, just somewhat dependent on lab work

to

> let me know how things are going. My hemoglobin has dropped to 8.0.

> Nothing has been prescribed or done about that, which concerns me.

> So please, anyone out there who has been in or is in blast crisis,

> please share your experiences with me.

> Sincerely,

>

>

>

[Guest guest]

HI ,

Our initial BC situation was quite similar and I couldn't agree with

Coralee more...this is a time for aggressive measures. As Coralee

shared, there may be some need for increased dosages, etc. One thing

for certain is that you need to see a CML Specialist if you are not

already doing so. Your local Oncologist can and should be willing to

work the local side of treatments that any specialist would

advise/require. The important thing is seeing that specialist and

letting him/her take the lead on your case.

With your Hemoglobin being around 8 a transfusion will certainly

improve your energy. And, as mentioned earlier, try to avoid crowds

or situations that might expose you to infection.

Please let us know if there is anything we can do for you. Best

wishes and feel free to email me privately if you wish. My email is

gstephens@...

Greg

Carolyn's Son

dx Jan '05, BC#1 12/06, BC#2 04/07

>

> Hi all,

> I was diagnosed in May 07 and put on Gleevec, 400mg until May of

08.

> My pcr was slowing going up so my doctor raised me to 600mg of G.

> After 2 1/2 months on 600mg, my blood counts started to drop, so he

> took me off G for two weeks before wanting to start me on Sprycel.

> During that two week period, my blood work went crazy and I was

> diagnosed as being in blast crisis. I was seen last Tuesday on an

> emergency basis at U of M. We are going to continue with the

Sprycel

> to try to get me into remission so I can get a bone marrow

> transplant. If the Sprycel doesn't work, there are a couple

> medications they will try and if that doesn't work, I will be

> hospitalized for 30-75 days of chemo to get me to remission.

> Well, you can imagine how my world has been turned upside down. I

am

> a teacher and was planning on returning to work this week. I am a

> single mom of two teenagers very active in fall sports. Also, with

> today's econonmy, my finances are a huge concern. My 74 year old

> father has really stepped up to the plate as a wonderful caregiver,

> taking me to appts, etc.

> I guess what I am looking for is some others of us CMLer's who have

> experience anything like this. Others who can share their

> experiences, symptons, treatment etc.

> My current symptons are extreme fatigue and headaches. I have no

> idea what to be watching for, just somewhat dependent on lab work

to

> let me know how things are going. My hemoglobin has dropped to

8.0.

> Nothing has been prescribed or done about that, which concerns me.

> So please, anyone out there who has been in or is in blast crisis,

> please share your experiences with me.

> Sincerely,

>

>