Re: Tasigna no longer working poss bmt?

[Guest guest]

Hi .I would not swear to this, but I think I  have heard Jerry Mayfield

use the term

" compassionate use " .  I have understood it, in the context he used it, to mean

there are times when a drug co./doctor will allow the use of a trial drug if

nothing else is working for the patient.  If I were you, I would call Dr.

Talpaz at the U of Mich and inquire about Ariad, to be started asap, not wait

for the phase 2.  Or Dr. Druker at OHSU.   I am not sure if they are

conducting Ariad trials at OHSU, but I know U of Mich is.  Phase 2 is about to

start, but " soon "   to the drs. and drug cos. is " anytime in the near future " . 

The best of luck, and I'm sure someone will correct me on this if I am wrong,

and you might also go to Jerry's site, CMLNEWDRUG.COM  and inquire there. 

Bobby

a ( Bobby ) Doyle, dob 12/17/29

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

From: terrijeff9 <terrijeff20@...>

Subject: [ ] Tasigna no longer working poss bmt?

Date: Wednesday, September 29, 2010, 6:44 AM

 

Where do I start. I've been a member of this group since diagnosis 5/2000.

I've had interferon and arac, moved onto the Gleevec trials, hit 0 twice, but

didn't last long. I was on that drug for 5 yrs. Then I moved to Sprycel trial,

that held me for 2.5 yrs, then quit working. Started Tasigna 1.5 years ago and

now I have had 3 consecutive increases in the pcr and my cyto results went up

from 5% to 25% in the last 3 months. I currently am at Greenebaum Cancer Ctr in

Balt Md. They do not have the Ariad drug as of yet, will be getting it, possibly

late October. I have had my Transplant Consult and am awaiting another next week

at Hopkins, trying to gather as much info as I can. My insurance just changed in

April of this year. In July, I just moved on to a full time position. (because I

have been feeling so good)! I'm not sure and no one can tell me how much time I

have until the disease progresses to next phase and transplant won't be an

option, they

say. This new insurance is not allowing me the Clinical trial option, says they

won't pay at all. I'm not sold yet on the BMT, I have a sibling 7/8 match. Last

night got results of a mutation which follows. Does anyone at all have any

ideas, thoughts, advice? Just scheduled to visit Hershey Medical Center and ins

is also allowing Cleveland Clinic consult all for bmt only.

* Final Report *

BCR-ABL1 kinase domain

Result: ? ? ? ?

A mutation was detected within the BCR-ABL1 kinase domain.

Nucleotide Change:

? ? ? ?

742 C>G

Predicted Amino Acid Change:

? ? ? ?

L248V

Interpretation:

Comment:

? ? ?

A nucleotide change encoding a leucine to valine substitution

at position 248 was detected within the BCR-ABL1 kinase

domain. The significance of this mutation in causing

resistance to imatinib mesylate is not known.

****************************************************************

Anxious for any input anyone may have!

Theresa Migut age 43

v

[Guest guest]

Hi Theresa,

I'm sorry to hear of your struggles to maintain a response. The good news

though, is that they've identified which mutation you have. By knowing which

mutation you have, you can now research if there is a drug that will overcome

it.

Before you jump into a transplant, I would definitely seek the advice of an

expert to see if there are other options open. It may be that transplant is in

deed your next move but I think that you'll feel much more confident about

making that decision if you speak with an expert first.

Good luck and let us know what happens,

Tracey

>

> Where do I start. I've been a member of this group since diagnosis 5/2000.

I've had interferon and arac, moved onto the Gleevec trials, hit 0 twice, but

didn't last long. I was on that drug for 5 yrs. Then I moved to Sprycel trial,

that held me for 2.5 yrs, then quit working. Started Tasigna 1.5 years ago and

now I have had 3 consecutive increases in the pcr and my cyto results went up

from 5% to 25% in the last 3 months. I currently am at Greenebaum Cancer Ctr in

Balt Md. They do not have the Ariad drug as of yet, will be getting it, possibly

late October. I have had my Transplant Consult and am awaiting another next week

at Hopkins, trying to gather as much info as I can. My insurance just changed in

April of this year. In July, I just moved on to a full time position. (because I

have been feeling so good)! I'm not sure and no one can tell me how much time I

have until the disease progresses to next phase and transplant won't be an

option, they say. This new insurance is not allowing me the Clinical trial

option, says they won't pay at all. I'm not sold yet on the BMT, I have a

sibling 7/8 match. Last night got results of a mutation which follows. Does

anyone at all have any ideas, thoughts, advice? Just scheduled to visit Hershey

Medical Center and ins is also allowing Cleveland Clinic consult all for bmt

only.

> * Final Report *

>

> BCR-ABL1 kinase domain

>

> Result: ? ? ? ?

> A mutation was detected within the BCR-ABL1 kinase domain.

>

>

>

> Nucleotide Change:

> ? ? ? ?

> 742 C>G

>

>

>

> Predicted Amino Acid Change:

> ? ? ? ?

> L248V

>

>

>

> Interpretation:

> Comment:

> ? ? ?

> A nucleotide change encoding a leucine to valine substitution

>

> at position 248 was detected within the BCR-ABL1 kinase

>

> domain. The significance of this mutation in causing

>

> resistance to imatinib mesylate is not known.

> ****************************************************************

>

> Anxious for any input anyone may have!

> Theresa Migut age 43

>

>

>

>

> v

>

[Guest guest]

Hi, Theresa:

I was on Gleevec for five years and developed the G250E mutation which rendered

the Gleevec useless.

My doc at MSKCC switched me to the more effective Sprycel and I have been PCRU

for two years.

If you need a quick referral to MSKCC I can email my doc who is acting head of

the leukemia dept.

A second opinion would not hurt. My email is ctdavies2003@... if you wish

to email me privately and chat by phone.

Best wishes,

Carl

________________________________

From: terrijeff9 <terrijeff20@...>

Sent: Wed, September 29, 2010 3:44:45 AM

Subject: [ ] Tasigna no longer working poss bmt?

Where do I start. I've been a member of this group since diagnosis 5/2000. I've

had interferon and arac, moved onto the Gleevec trials, hit 0 twice, but didn't

last long. I was on that drug for 5 yrs. Then I moved to Sprycel trial, that

held me for 2.5 yrs, then quit working. Started Tasigna 1.5 years ago and now I

have had 3 consecutive increases in the pcr and my cyto results went up from 5%

to 25% in the last 3 months. I currently am at Greenebaum Cancer Ctr in Balt Md.

They do not have the Ariad drug as of yet, will be getting it, possibly late

October. I have had my Transplant Consult and am awaiting another next week at

Hopkins, trying to gather as much info as I can. My insurance just changed in

April of this year. In July, I just moved on to a full time position. (because I

have been feeling so good)! I'm not sure and no one can tell me how much time I

have until the disease progresses to next phase and transplant won't be an

option, they say. This new insurance is not allowing me the Clinical trial

option, says they won't pay at all. I'm not sold yet on the BMT, I have a

sibling 7/8 match. Last night got results of a mutation which follows. Does

anyone at all have any ideas, thoughts, advice? Just scheduled to visit Hershey

Medical Center and ins is also allowing Cleveland Clinic consult all for bmt

only.

* Final Report *

BCR-ABL1 kinase domain

Result: ? ? ? ?

A mutation was detected within the BCR-ABL1 kinase domain.

Nucleotide Change:

? ? ? ?

742 C>G

Predicted Amino Acid Change:

? ? ? ?

L248V

Interpretation:

Comment:

? ? ?

A nucleotide change encoding a leucine to valine substitution

at position 248 was detected within the BCR-ABL1 kinase

domain. The significance of this mutation in causing

resistance to imatinib mesylate is not known.

****************************************************************

Anxious for any input anyone may have!

Theresa Migut age 43

v

[Guest guest]

Terri,

My daughter had a BMT August 10. Yesterday was day 50. She is doing great.

She was diagnosed in Mar 2009 just before her 20th birthday. When she first

started discussing and wanting a BMT I was not in favor of it. Over time she

convinced me that it was the best thing for her and I was nervously in favor of

her getting it. She had two siblings that were matches. They pretty much

matched on every parameter they can test on. A few weeks ago they took bone

marrow from her for the first time after the BMT and the Philadelphia Chromosome

was undetectable. She is now staying at the Mc house. She has to

remain very close to the hospital until day 100. In June and July she was

constantly going to the hospital, couple times a week or more sometimes, for

various tests to make sure everything was perfect for the BMT. She went into

the hospital August 2nd for a week of pre-BMT chemo to condition her body for

the BMT. August 10 was transplant day and it was about 2 weeks after that where

they started getting indications that it worked. That timeframe is when she was

starting feel better too. She did have some nausea and diarrhea (should have

spell check here) but they have medication to combat the nausea in particular.

She still has strict guidelines on what she can do, but is gaining more strength

every day. The other night we took an hour walk together. She also still gets

infusions to rebuild her immune system. There is no more nausea, but the loose

stool is still present and the Docs say her gut is still healing. Also I hope

you are not a sun worshiper because that is officially over once you have the

BMT. It tends to cause graft vs host. Good luck with your treatments and this

very big decision.

[Guest guest]

O!!! YIPPEEE!!!

Number 1353 in the Zero Club

Zavie

It doesn’t matter how you get to Zero. Gleevec, other TKIs, Interferon,

snake oil, etc. They all get numbers.

Zavie

Zavie (age 72)

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

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

4.0 log reduction Dec/09

4.4 log reduction Apr/10

e-mail: <mailto:zmiller@...> zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

From: [mailto: ] On Behalf Of

duane36_1999

Sent: September-30-10 9:20 AM

Subject: [ ] Re: Tasigna no longer working poss bmt?

Terri,

My daughter had a BMT August 10. Yesterday was day 50. She is doing great.

She was diagnosed in Mar 2009 just before her 20th birthday. When she first

started discussing and wanting a BMT I was not in favor of it. Over time she

convinced me that it was the best thing for her and I was nervously in favor

of her getting it. She had two siblings that were matches. They pretty much

matched on every parameter they can test on. A few weeks ago they took bone

marrow from her for the first time after the BMT and the Philadelphia

Chromosome was undetectable. She is now staying at the Mc

house. She has to remain very close to the hospital until day 100. In June

and July she was constantly going to the hospital, couple times a week or

more sometimes, for various tests to make sure everything was perfect for

the BMT. She went into the hospital August 2nd for a week of pre-BMT chemo

to condition her body for the BMT. August 10 was transplant day and it was

about 2 weeks after that where they started getting indications that it

worked. That timeframe is when she was starting feel better too. She did

have some nausea and diarrhea (should have spell check here) but they have

medication to combat the nausea in particular. She still has strict

guidelines on what she can do, but is gaining more strength every day. The

other night we took an hour walk together. She also still gets infusions to

rebuild her immune system. There is no more nausea, but the loose stool is

still present and the Docs say her gut is still healing. Also I hope you are

not a sun worshiper because that is officially over once you have the BMT.

It tends to cause graft vs host. Good luck with your treatments and this

very big decision.

[Guest guest]

I currently am at Greenebaum Cancer Ctr in Balt Md. They do not have the Ariad

drug as of yet, will be getting it, possibly late October. I have had my

Transplant Consult and am awaiting another next week at Hopkins, trying to

gather as much info as I can. My insurance just changed in April of this year.

In July, I just moved on to a full time position. (because I have been feeling

so good)! I'm not sure and no one can tell me how much time I have until the

disease progresses to next phase and transplant won't be an option, they say.

This new insurance is not allowing me the Clinical trial option, says they won't

pay at all. I'm not sold yet on the BMT, I have a sibling 7/8 match. Last night

got results of a mutation which follows. Does anyone at all have any ideas,

thoughts, advice? Just scheduled to visit Hershey Medical Center and ins is also

allowing Cleveland Clinic consult all for bmt only. '

------------------------------

Hi Terri,

First, a transplant center will usually push for a transplant, so it is not

totally impartial information.

At each BMT center get in writing what the base cost will be (even though you

have insurance).....it is probably about $350,000 or more. Then appeal to your

insurance (they probably have an appeal process) and tell them that trying a new

drug trial will cost so much less and it should be considered. They need to

understand that this is NOT like other trial and experimental treatments.....the

treatments for CML are targeted and are not highly experimental. The phase 2

trial is almost just an FDA formality....this new drug, Ariad, will be

fast-tracked and it being on the market is pretty much a given. Also speak to

the insurance commissioner in your state, as Lottie suggested.

Then you need to find out the significance of the mutation that you have (I am

not sure that you gave enough info on the list, but I don't know mutations). Go

to Jerry's website (www.newcmldrug.com) and ask Jerry about your mutation....he

is very knowledgeable and it may be known to him. Then I would want to go

right to the top (no middle level cml specialist).....that would mean seeing Dr.

Talpaz for a consult in Ann Arbor, Mich. Get his opinion....is this a mutation

that can be treated successfully. He has 2 new drugs in trial there. Ask your

insurance to pay for this consult as a second opinion about drug

treatment.....and remind them that if you can be treated by drug, it will cost

them less (in the short term, but don't say that).

You need to be very pro-active about this. I would not undergo a transplant

unless it was the last option and you do not have a complete match (and some

mismatches are worse than others). Ask the bmt centers about the mismatch that

you have.

Where does your present oncologist stand with all this...what is his position?

advice?

Fight hard....get the information that you need.....and try to see Dr. Talpaz

asap. Those are my suggestions.

C.