Update

[Guest guest]

Thanks everyone for the info. So far it looks like my dr freaked my family

out for nothing.

Dr Lim said all that was detected is a new protein, which doesn't

necessarily mean anything that bad. My numbers only went up slightly, which

he said was not that out of the normal. At the moment he is having me

maintain the same treatment. I will have a BMB in the next month and see him

again in two. He is going to have my sisters and me typed, but doesn't think

we are heading down that path.

It's only about an 8 hr drive to San Francisco, so I'll have to keep that in

mind.

[ ] For Neal, and Lottie....and Dorrie

>

> Tomorrow I'm going to Cedar Sinai to talk to the CML/BMT specialist. They

> are thinking that I may be a candidate for a BMT. Does anyone here have

any

> advice for me? Is it as bad as it sounds?

>

> Also, does anyone have any experience dealing with SSI? We blew through

our

> savings when I was on State Disability Insurance last year, and I don't

> think we can make it through another 6 months out of work without a little

> help from the Feds.

>

> -Neal

_________________________________

Hi Neal ( also),

I just had an appointment with Dr. Druker today....I know you are relatively

new to CML but I suppose you recognize that name? the developed of Gleevec

and this whole new era of treating CML with molecularly targeted drugs VS

BMTs.

He has an Ariad trial going right now (that is closed....but a Phase 2 will

open soon).......he said that NO MUTATIONS are escaping this drug!!! it is

working for every mutation.

It is not an available drug yet.....you would have to enter a trial but if

you live in Calif?.....the phase 2 trials will probably be with Dr. Shah in

San Francisco.....Dr. Druker in Portland, Oregon.

If you could not wait until that opens (depending on your disease status),

you might get it under compassionate use.

Just because you have a mutation, that does NOT mean you need a BMT. When

you consult with a transplant specialist, you need the facts: what % of

patients die from the procedure (never leave the hospital), or in the first

100 days or the first year (this is the mortality rate).

What % get chronic graft vs host disease....more likely if you do not have a

related donor for your transplant. If you have cGVHD you could be on

medications for the rest of your life...this is serious stuff.

This is why people will tell you, that a transplant is a last resort

treatment for CML now that we have these drugs. I can't believe that either

of you young gugs (Neal or ) are a candidate for a BMT.

Get the facts.

_______________________

Lottie, Dr. Druker told me today that the trial you are looking at, the

trial drug that starts with D......it has a totally different binding site,

so escapes all mutations and seems to be working well.

Dorrie.....Bosutinib is still just in trials that are closed. Jerry Mayfield

said that it could be a long time before this one is approved (he was on it

in trial). The Ariad trial will be available before anything with Bosutinib.

C.

[Guest guest]

Rejoice. How wonderful. Enjoy each moment.

Be prepared that you may have health issues. We are all different. However do

not dwell on what might be. Chersih the miracle that is.

Raniolo

From: <anelica1016@...>

Subject: [ ] Update

Date: Friday, April 1, 2011, 7:20 AM

 

Hi all, I haven't written since I became pregnant, but would read the daily

posts. How I left off before getting pregnant is that I have some sort of

autoimmune inflamatory disorder which caused dry eyes, joint pain, swelling in

wrists and fingers, psoriasis of nails, tenosynovitis of hands and wrists,

nodules on toes and fingers and all over achiness that felt like a fever but did

not have one, also a thyroid goiter and nodules on thyroid and swollen lymph

nodes on neck. Mind you all bloodwork is coming back seronegative.

The RA dr. put me on mobic (didn't help), cellebrex (helped but couldn't

continue due to my GERDs acting up) then finally plaquenal (which may have

helped after 3 or 4 months, however, turned out I got pregnant then).

All symptoms went away during this pregnancy. My face is thin and neck, I look

great. My fingers have shrunk and rings are falling off. I lost 5 pounds and

during the pregnancy (now in the 9th month have only gained 10 pounds). The baby

is textbook perfect and a great size and developing perfectly.

My concerns are after the pregnancy. I look and feel myself. My metabolism is

normal again and joints feel awesome. I am afraid what is going to happen

afterwards. I have read it all comes back and usually with a vengence and it

makes me depressed to look forward to this again. I plan to try to breastfeed

the baby.

Any input would be great or advice. Thanks

[Guest guest]

Hi brenda, great to hear from you. I would talk to your rheum and OB about an

after-delivery flare management plan. I continued to nreastfeed and use Enbrel

about every 2 weeks. When I had anmoderate post delivery flare, I did a burst of

prednisone which quieted things down. Kate f

Sent from my iPhone

On Apr 1, 2011, at 6:20 AM, " " <anelica1016@...> wrote:

> Hi all, I haven't written since I became pregnant, but would read the daily

posts. How I left off before getting pregnant is that I have some sort of

autoimmune inflamatory disorder which caused dry eyes, joint pain, swelling in

wrists and fingers, psoriasis of nails, tenosynovitis of hands and wrists,

nodules on toes and fingers and all over achiness that felt like a fever but did

not have one, also a thyroid goiter and nodules on thyroid and swollen lymph

nodes on neck. Mind you all bloodwork is coming back seronegative.

>

> The RA dr. put me on mobic (didn't help), cellebrex (helped but couldn't

continue due to my GERDs acting up) then finally plaquenal (which may have

helped after 3 or 4 months, however, turned out I got pregnant then).

>

> All symptoms went away during this pregnancy. My face is thin and neck, I look

great. My fingers have shrunk and rings are falling off. I lost 5 pounds and

during the pregnancy (now in the 9th month have only gained 10 pounds). The baby

is textbook perfect and a great size and developing perfectly.

>

> My concerns are after the pregnancy. I look and feel myself. My metabolism is

normal again and joints feel awesome. I am afraid what is going to happen

afterwards. I have read it all comes back and usually with a vengence and it

makes me depressed to look forward to this again. I plan to try to breastfeed

the baby.

>

> Any input would be great or advice. Thanks

>

>

[Guest guest]

Forgot to add that it might be reassuring for you to read Dr Hale's work on

medication and mother's milk. It is his opinion that antiTNFs are safe for

breastfeeding mothers since any amount passing into the milk would be destroyed

by the babe's gut - after all that's why we can't take these meds by mouth.

Google " hale medications breastfeeding " and his stuff should pop right up. Kate

f

Sent from my iPhone

On Apr 1, 2011, at 6:20 AM, " " <anelica1016@...> wrote:

> Hi all, I haven't written since I became pregnant, but would read the daily

posts. How I left off before getting pregnant is that I have some sort of

autoimmune inflamatory disorder which caused dry eyes, joint pain, swelling in

wrists and fingers, psoriasis of nails, tenosynovitis of hands and wrists,

nodules on toes and fingers and all over achiness that felt like a fever but did

not have one, also a thyroid goiter and nodules on thyroid and swollen lymph

nodes on neck. Mind you all bloodwork is coming back seronegative.

>

> The RA dr. put me on mobic (didn't help), cellebrex (helped but couldn't

continue due to my GERDs acting up) then finally plaquenal (which may have

helped after 3 or 4 months, however, turned out I got pregnant then).

>

> All symptoms went away during this pregnancy. My face is thin and neck, I look

great. My fingers have shrunk and rings are falling off. I lost 5 pounds and

during the pregnancy (now in the 9th month have only gained 10 pounds). The baby

is textbook perfect and a great size and developing perfectly.

>

> My concerns are after the pregnancy. I look and feel myself. My metabolism is

normal again and joints feel awesome. I am afraid what is going to happen

afterwards. I have read it all comes back and usually with a vengence and it

makes me depressed to look forward to this again. I plan to try to breastfeed

the baby.

>

> Any input would be great or advice. Thanks

>

>

[Guest guest]

I couldn't agree more with the advice to work with your rheumy about

managing a post-delivery flare. I believe it is not uncommon.

Best wishes for good days,