Re: BMT post 76/First Setback

[Guest guest]

> Day 76 brings my first setback since the BMT process began.

Hi Dane,

I am way behind on messages (been in Germany for business), but I am

so sorry to read this one! You were so looking forward to that early

return home. My heart sank to read the subject line and although the

13% is a real disappointment, I was relieved that you did not get

some crazy infection or something, which could be much worse.

As you know, you are in the best possible hands. It is great that

they are so open to your suggestion of adding one of the newer

wonderdugs into the mix. The great news is that we are now armed

with lots of possibilities against the ol' BCR-ABL. Keep your chin

up as best you can.

Thanks for continuing to inspire us with your courage and your

breathtaking photos of Texas. I have to admit (sorry all Texans out

there) that I have never been a real Texas fan, having only driven

through the panhandle. But your pictures really make me want to

visit there!

Prayers and warm thoguhts coming your way~

in MI

[Guest guest]

Thanks very much for the kinds words. Feeling and dealing better

with the shocky news. The re-introduction of Gleevec or possibly

BMS options are in the wings.

Now just waiting to see what the effect of the reduction of anti-

GVHD meds causes. That's the name of the game it seems.

By the way...going through the panhandle and drawing an opion about

Texas is like spending the day in Newark and drawing an opinion

about New England.

> > Day 76 brings my first setback since the BMT process began.

>

> Hi Dane,

>

> I am way behind on messages (been in Germany for business), but I

am

> so sorry to read this one! You were so looking forward to that

early

> return home. My heart sank to read the subject line and although

the

> 13% is a real disappointment, I was relieved that you did not get

> some crazy infection or something, which could be much worse.

>

> As you know, you are in the best possible hands. It is great that

> they are so open to your suggestion of adding one of the newer

> wonderdugs into the mix. The great news is that we are now armed

> with lots of possibilities against the ol' BCR-ABL. Keep your chin

> up as best you can.

>

> Thanks for continuing to inspire us with your courage and your

> breathtaking photos of Texas. I have to admit (sorry all Texans

out

> there) that I have never been a real Texas fan, having only driven

> through the panhandle. But your pictures really make me want to

> visit there!

>

> Prayers and warm thoguhts coming your way~

> in MI

[Guest guest]

Dane, I'm so sorry to hear about the setback. You will remain in my prayers.

And, after growing up in the panhandle of Texas, I completely and totally agree

with both of you!

Dana

Dane <dane714@...> wrote:

By the way...going through the panhandle and drawing an opion about

Texas is like spending the day in Newark and drawing an opinion

about New England.

[Guest guest]

Hey Dane,

Sorry about this set-back. You've been a real trooper through all of

this so I do understand how this could be a downer. On the other

hand it just seems to me that by your medical team controlling the

dosing of the tacrolimus, then hopefully the GVHD that you do get

will be controlled well enough to just give you enough of the GVL

affect that you need to attack those residual cells, without causing

you too much suffering.

That is great news that you can still go home on the weekends and

hopefully those clinic visits will stay down to a minimum and allow

you to keep your freedom.

It will be interesting to see what your research onc comes back with

vis a vis the use of IM, BMS or AMN. I wonder if you would still be

resistent to IM now that you have a new immune system?

Hopefully all of this will bring you to a complete and healthy cure.

Love and all warm wishes for your complete healing and cure,

Cheryl

> Day 76 brings my first setback since the BMT process began.

>

> I received the results of my second biopsy today. It showed that I

am now 100% donor cells (good) but my BCR-ABL level is up to 13.5

(not good).

>

> In comparison, my first biopsy came back 99% donor cells and a BCR-

ABL level of 1.0.

>

> Dr. DeLima explained to me that the anti-GVHD drug tacrolimus also

reduces the donor cells' ability to fight the leukemia, so now my

tacrolimus dose will be decreased.

>

> The plan is to induce a small amount of GVHD in order to achieve

Graft Vs Leukemia. Graft Vs Leukemia can start to bring the BCR-ABL

level back down.

>

> Dr. DeLima has also mentioned the possibility of bringing Gleevec

back into the mix, but I have my doubts about this because I have

already shown a resistance to the drug. I talked with him as well as

with my research onc about replacing the use of Gleevec with one of

the newer BMS or AMN107 drugs to knock out the BCR-ABL and give my

new immune system a helping hand.

>

> He thought enough of the idea to email my research onc to get his

opinion. I sent my research onc a similar email and expect to hear

back from him soon.

>

> In the meantime, any chance of going home early is now gone, as my

test results were not optimum. I will be here for at least another

month, possibly longer. The good news is that as of this writing, I

should still be allowed to go home on weekends.

>

> As of this writing, I am still only in clinic two days a week, and

I am still off home infusions unless my magnesium levels drop lower

than they are.

>

> So I wait....three more weeks until another biopsy, one more week

to get those results.

>

> Tick....tock.....tick....tock, etc.

>

> Not the best day I've had since this thing began.

>

> Dane

>

>

>

[Guest guest]

Thanks very much.

After dicussions with both my transplant and my research onc we

decided tha on Monday we will throw Gleevec back into the mix.

The idea is to hit the stragglers from two fronts. My own immune

system which is being nudged by a reduction in anti rejection meds,

and by gene targeting therapy. It could prove to be the one-two

punch needed to knock out the stragglers.

The BMS drug is also a possiblilty and is being looked into as I

write this.

I take great comfort in knowing that I still am doing everthing I

can to help myself by keeping my research onc and my transplant onc

communicating with each other. The rest I hand over to God.

Regards and Prayers

dt

--- In , " cher111376 " <cheryl.simoneau@m...>

wrote:

>

> Hey Dane,

>

> Sorry about this set-back. You've been a real trooper through all

of

> this so I do understand how this could be a downer. On the other

> hand it just seems to me that by your medical team controlling

the

> dosing of the tacrolimus, then hopefully the GVHD that you do get

> will be controlled well enough to just give you enough of the GVL

> affect that you need to attack those residual cells, without

causing

> you too much suffering.

>