Re: My husband's diagnosis and our story

[Guest guest]

Judy and Fonsie...

What a story! Congrats on the great results since starting treatment. Stick to

the plan and keep us posted on your journey.

Hang in there and really glad he quit smoking and got diagnosed!

Blessings,

Rhonda

Dx 11 2 08

Houston, TX

MMR and in Zavie's zero club (1171?)

Sent from my Verizon Wireless BlackBerry

[ ] My husband's diagnosis and our story

Hi I am new here and here is our story:

On 12/24/08 my husband quit smoking after 51 years. Shortly after that the

symptoms came out -- weight loss, exhaustion, night sweats, etc. He got

bronchitis twice. We did not know. On 1/28/09 his stomach protruded out and he

was so uncomfortable he could no longer work. He developed a cough so bad he

could hardly breath. I found him a community health doc for a $5.00 visit as he

is a contractor with no insurance. The doc felt his stomach and sent him the

following Mon for a CT Scan (normally 1200 but for a disc. $300 thank god). The

cat scan took 15 mins and while we had a sandwich across the street we got a

call from Dr. Burke's to come back in. He told us the news was bad, it was

either Leukemia vs. Lymphoma and to see an Oncologist right away. He made the

appt for Dr. Shih at TN Oncology (affiliated with Cannon Cancer Centers

here in TN) for 2/12/09. I went about telling his 2 daughters (49 and 31) the

news, they took it bad, but I told them that we just got married 12/29/08 and to

not throw dirt on him yet, cuz we can beat this. Then they got the right

attitude. We went to the oncology appt. 2/12 and Dr. Shih said his white blood

cell count was 500,000 and it should be 4.5 5000 and he wanted to treat him on

an inpatient basis to control his electrolytes while he got to the bottom of

what exact type of Leukemia he had. We admitted him to St. hospital that

day. Well I am amazed. He underwent Leukophoresis for 2 days while there.

They literally took the " sludge " blood (after giving him 2 units of healthy

blood) out and pulled out white blood cells, sending back the healthier blood to

his body.. After 2 treatments, his blood cell count was 250,000. Dr. Shih put

him on Hydrea and Gleevec and when he left St. on 2/19 his count was at

230,000. He left on Hydrea only 2 x a day because Gleevec is so expensive and

we were waiting on approval for financial aid from Novartis for free Gleevec,

however, when we saw Dr. Shih a week later, Fonsie's blood was down to 65,000

and dropping. By that time we had received approval and our first shipment of

Gleevec. Fonsie now takes 400mg Gleevec once daily and only sees Dr. Shih once

a month. He continues to get better every day. We hope to have him in

remission soon and in full cytogenic remission after that. Our financial

situation is kinda crazy now even though I am applying for help and Fonsie has

applied for social security disability, we have not heard yet on the outcome and

waiting is not our speciality. We are making the best of it and we find that

each new day is more special than the last. The doctor told Fonsie that if he

did not quit smoking (it was masking his symptoms) that he would be dead by now.

I know this has been a long posting, but forgive me as it is my first. The rest

should be shorter. Updates to my caregiver stories will be shorter. Thanks

y'all for listening. Tennessee for 15 years. Upstate ny for 31 Judy and

fonsie

[Guest guest]

Wow, what an incredible story. Judy, you two have really been through it -- but

what strength. My hunch is that your Fonsie will get better and better. We are

sure lucky to be living in these times, with so much research (and consequently

new miracle drugs) underway! Blessings to you both from in San

Francisco.

From: esnofla@...

Date: Sat, 7 Mar 2009 15:56:27 +0000

Subject: [ ] My husband's diagnosis and our story

Hi I am new here and here is our story:

On 12/24/08 my husband quit smoking after 51 years. Shortly after that the

symptoms came out -- weight loss, exhaustion, night sweats, etc. He got

bronchitis twice. We did not know. On 1/28/09 his stomach protruded out and he

was so uncomfortable he could no longer work. He developed a cough so bad he

could hardly breath. I found him a community health doc for a $5.00 visit as he

is a contractor with no insurance. The doc felt his stomach and sent him the

following Mon for a CT Scan (normally 1200 but for a disc. $300 thank god). The

cat scan took 15 mins and while we had a sandwich across the street we got a

call from Dr. Burke's to come back in. He told us the news was bad, it was

either Leukemia vs. Lymphoma and to see an Oncologist right away. He made the

appt for Dr. Shih at TN Oncology (affiliated with Cannon Cancer Centers

here in TN) for 2/12/09. I went about telling his 2 daughters (49 and 31) the

news, they took it bad, but I told them that we just got married 12/29/08 and to

not throw dirt on him yet, cuz we can beat this. Then they got the right

attitude. We went to the oncology appt. 2/12 and Dr. Shih said his white blood

cell count was 500,000 and it should be 4.5 5000 and he wanted to treat him on

an inpatient basis to control his electrolytes while he got to the bottom of

what exact type of Leukemia he had. We admitted him to St. hospital that

day. Well I am amazed. He underwent Leukophoresis for 2 days while there.

They literally took the " sludge " blood (after giving him 2 units of healthy

blood) out and pulled out white blood cells, sending back the healthier blood to

his body. After 2 treatments, his blood cell count was 250,000. Dr. Shih put

him on Hydrea and Gleevec and when he left St. on 2/19 his count was at

230,000. He left on Hydrea only 2 x a day because Gleevec is so expensive and

we were waiting on approval for financial aid from Novartis for free Gleevec,

however, when we saw Dr. Shih a week later, Fonsie's blood was down to 65,000

and dropping. By that time we had received approval and our first shipment of

Gleevec. Fonsie now takes 400mg Gleevec once daily and only sees Dr. Shih once

a month. He continues to get better every day. We hope to have him in

remission soon and in full cytogenic remission after that. Our financial

situation is kinda crazy now even though I am applying for help and Fonsie has

applied for social security disability, we have not heard yet on the outcome and

waiting is not our speciality. We are making the best of it and we find that

each new day is more special than the last. The doctor told Fonsie that if he

did not quit smoking (it was masking his symptoms) that he would be dead by now.

I know this has been a long posting, but forgive me as it is my first. The rest

should be shorter. Updates to my caregiver stories will be shorter. Thanks

y'all for listening. Tennessee for 15 years. Upstate ny for 31 Judy and

fonsie

_________________________________________________________________

Hotmail® is up to 70% faster. Now good news travels really fast.

http://windowslive.com/online/hotmail?ocid=TXT_TAGLM_WL_HM_70faster_032009

[Guest guest]

Judy and Fonsie-

Welcome. Remission is on the horizon just hang in there.

Hope Hugs and a fighting spirit- Chi from California

> From: Rosen Lum <rrosenlum@...>

> Subject: RE: [ ] My husband's diagnosis and our story

>

> Date: Saturday, March 7, 2009, 9:39 AM

> Wow, what an incredible story. Judy, you two have really

> been through it -- but what strength. My hunch is that your

> Fonsie will get better and better. We are sure lucky to be

> living in these times, with so much research (and

> consequently new miracle drugs) underway! Blessings to you

> both from in San Francisco.

>

>

> From: esnofla@...

> Date: Sat, 7 Mar 2009 15:56:27 +0000

> Subject: [ ] My husband's diagnosis and our story

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Hi I am new here and here is our story:

>

>

>

> On 12/24/08 my husband quit smoking after 51 years. Shortly

> after that the symptoms came out -- weight loss, exhaustion,

> night sweats, etc. He got bronchitis twice. We did not

> know. On 1/28/09 his stomach protruded out and he was so

> uncomfortable he could no longer work. He developed a cough

> so bad he could hardly breath. I found him a community

> health doc for a $5.00 visit as he is a contractor with no

> insurance. The doc felt his stomach and sent him the

> following Mon for a CT Scan (normally 1200 but for a disc.

> $300 thank god). The cat scan took 15 mins and while we had

> a sandwich across the street we got a call from Dr.

> Burke's to come back in. He told us the news was bad,

> it was either Leukemia vs. Lymphoma and to see an Oncologist

> right away. He made the appt for Dr. Shih at TN Oncology

> (affiliated with Cannon Cancer Centers here in TN) for

> 2/12/09. I went about telling his 2 daughters (49 and 31)

> the news, they took it bad, but I told them that we just got

> married 12/29/08 and to not throw dirt on him yet, cuz we

> can beat this. Then they got the right attitude. We went

> to the oncology appt. 2/12 and Dr. Shih said his white blood

> cell count was 500,000 and it should be 4.5 5000 and he

> wanted to treat him on an inpatient basis to control his

> electrolytes while he got to the bottom of what exact type

> of Leukemia he had. We admitted him to St. hospital

> that day. Well I am amazed. He underwent Leukophoresis for

> 2 days while there. They literally took the

> " sludge " blood (after giving him 2 units of

> healthy blood) out and pulled out white blood cells, sending

> back the healthier blood to his body. After 2 treatments,

> his blood cell count was 250,000. Dr. Shih put him on

> Hydrea and Gleevec and when he left St. on 2/19 his

> count was at 230,000. He left on Hydrea only 2 x a day

> because Gleevec is so expensive and we were waiting on

> approval for financial aid from Novartis for free Gleevec,

> however, when we saw Dr. Shih a week later, Fonsie's

> blood was down to 65,000 and dropping. By that time we had

> received approval and our first shipment of Gleevec. Fonsie

> now takes 400mg Gleevec once daily and only sees Dr. Shih

> once a month. He continues to get better every day. We

> hope to have him in remission soon and in full cytogenic

> remission after that. Our financial situation is kinda

> crazy now even though I am applying for help and Fonsie has

> applied for social security disability, we have not heard

> yet on the outcome and waiting is not our speciality. We

> are making the best of it and we find that each new day is

> more special than the last. The doctor told Fonsie that if

> he did not quit smoking (it was masking his symptoms) that

> he would be dead by now. I know this has been a long

> posting, but forgive me as it is my first. The rest should

> be shorter. Updates to my caregiver stories will be

> shorter. Thanks y'all for listening. Tennessee for 15

> years. Upstate ny for 31 Judy and fonsie

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> _________________________________________________________________

> Hotmail® is up to 70% faster. Now good news travels really

> fast.

> http://windowslive.com/online/hotmail?ocid=TXT_TAGLM_WL_HM_70faster_032009

>

>

[Guest guest]

Welcome to our group and you don't have to be sorry for the length of your post

.. You are at the right place to find people who are able to understand your

situation . Congrats for the great results at this time and please keep us

posted each time you need to ventilate .

Take care

Emile ( Canada )

# 527 Zavie's Club

[Guest guest]

Welcome Judy and Fonsie,

I am sorry to hear about Fonsie CML, but on the other hand if you had

to choose a leukemia that's the one to get. Most of us are doing well

years after diagnosis and living a near normal life. I just got back

from climbing, a bit sore but for a better reason than leukemia. My

best wishes for a prompt remission, hang in there, it should get

better in the next few weeks.

Marcos.

On Sat, Mar 7, 2009 at 7:56 AM, esnofla@...

<esnofla@...> wrote:

> Hi I am new here and here is our story:

>

> On 12/24/08 my husband quit smoking after 51 years. Shortly after that the

> symptoms came out -- weight loss, exhaustion, night sweats, etc. He got

> bronchitis twice. We did not know. On 1/28/09 his stomach protruded out and

> he was so uncomfortable he could no longer work. He developed a cough so bad

> he could hardly breath. I found him a community health doc for a $5.00 visit

> as he is a contractor with no insurance. The doc felt his stomach and sent

> him the following Mon for a CT Scan (normally 1200 but for a disc. $300

> thank god). The cat scan took 15 mins and while we had a sandwich across the

> street we got a call from Dr. Burke's to come back in. He told us the news

> was bad, it was either Leukemia vs. Lymphoma and to see an Oncologist right

> away. He made the appt for Dr. Shih at TN Oncology (affiliated with

> Cannon Cancer Centers here in TN) for 2/12/09. I went about telling his 2

> daughters (49 and 31) the news, they took it bad, but I told them that we

> just got married 12/29/08 and to not throw dirt on him yet, cuz we can beat

> this. Then they got the right attitude. We went to the oncology appt. 2/12

> and Dr. Shih said his white blood cell count was 500,000 and it should be

> 4.5 5000 and he wanted to treat him on an inpatient basis to control his

> electrolytes while he got to the bottom of what exact type of Leukemia he

> had. We admitted him to St. hospital that day. Well I am amazed. He

> underwent Leukophoresis for 2 days while there. They literally took the

> " sludge " blood (after giving him 2 units of healthy blood) out and pulled

> out white blood cells, sending back the healthier blood to his body. After 2

> treatments, his blood cell count was 250,000. Dr. Shih put him on Hydrea and

> Gleevec and when he left St. on 2/19 his count was at 230,000. He

> left on Hydrea only 2 x a day because Gleevec is so expensive and we were

> waiting on approval for financial aid from Novartis for free Gleevec,

> however, when we saw Dr. Shih a week later, Fonsie's blood was down to

> 65,000 and dropping. By that time we had received approval and our first

> shipment of Gleevec. Fonsie now takes 400mg Gleevec once daily and only sees

> Dr. Shih once a month. He continues to get better every day. We hope to have

> him in remission soon and in full cytogenic remission after that. Our

> financial situation is kinda crazy now even though I am applying for help

> and Fonsie has applied for social security disability, we have not heard yet

> on the outcome and waiting is not our speciality. We are making the best of

> it and we find that each new day is more special than the last. The doctor

> told Fonsie that if he did not quit smoking (it was masking his symptoms)

> that he would be dead by now. I know this has been a long posting, but

> forgive me as it is my first. The rest should be shorter. Updates to my

> caregiver stories will be shorter. Thanks y'all for listening. Tennessee for

> 15 years. Upstate ny for 31 Judy and fonsie

>

>

--

Marcos Perreau Guimaraes

Suppes Brain Lab

Ventura Hall - CSLI

Stanford University

220 Panama street

Stanford CA 94305-4101

650 614 2305

650 468 9926 (cell)

marcospg@...

montereyunderwater@...

www.stanford.edu/~marcospg/

[Guest guest]

Hi Judy and Fonsie,

Welcome! Lots of people who went back to their own diagnosis when they read

your post. I certainly did, and mine was just a couple of years ago.

I know it is hard and scary but you are doing great. The good news is that now

your husband gets to handle all this as a nonsmoker, which I am sure is much

healthier and better for him too. It was good that he quit when he did.

This group is a wonderful one! They will bring you up when you're down and help

you when you don't know what is going on. THere are wise people who will give

you information when you can't figure out your lab tests, and give you good

advice when you don't know what your next step should be.

We are all walking the same path you are, so enjoy the fellowship.

Vicki

>

> Hi I am new here and here is our story:

>

> On 12/24/08 my husband quit smoking after 51 years. Shortly after that the

symptoms came out -- weight loss, exhaustion, night sweats, etc. He got

bronchitis twice. We did not know. On 1/28/09 his stomach protruded out and he

was so uncomfortable he could no longer work. He developed a cough so bad he

could hardly breath. I found him a community health doc for a $5.00 visit as he

is a contractor with no insurance. The doc felt his stomach and sent him the

following Mon for a CT Scan (normally 1200 but for a disc. $300 thank god). The

cat scan took 15 mins and while we had a sandwich across the street we got a

call from Dr. Burke's to come back in. He told us the news was bad, it was

either Leukemia vs. Lymphoma and to see an Oncologist right away. He made the

appt for Dr. Shih at TN Oncology (affiliated with Cannon Cancer Centers

here in TN) for 2/12/09. I went about telling his 2 daughters (49 and 31) the

news, they took it bad, but I told them that we just got married 12/29/08 and to

not throw dirt on him yet, cuz we can beat this. Then they got the right

attitude. We went to the oncology appt. 2/12 and Dr. Shih said his white blood

cell count was 500,000 and it should be 4.5 5000 and he wanted to treat him on

an inpatient basis to control his electrolytes while he got to the bottom of

what exact type of Leukemia he had. We admitted him to St. hospital that

day. Well I am amazed. He underwent Leukophoresis for 2 days while there.

They literally took the " sludge " blood (after giving him 2 units of healthy

blood) out and pulled out white blood cells, sending back the healthier blood to

his body. After 2 treatments, his blood cell count was 250,000. Dr. Shih put

him on Hydrea and Gleevec and when he left St. on 2/19 his count was at

230,000. He left on Hydrea only 2 x a day because Gleevec is so expensive and

we were waiting on approval for financial aid from Novartis for free Gleevec,

however, when we saw Dr. Shih a week later, Fonsie's blood was down to 65,000

and dropping. By that time we had received approval and our first shipment of

Gleevec. Fonsie now takes 400mg Gleevec once daily and only sees Dr. Shih once

a month. He continues to get better every day. We hope to have him in

remission soon and in full cytogenic remission after that. Our financial

situation is kinda crazy now even though I am applying for help and Fonsie has

applied for social security disability, we have not heard yet on the outcome and

waiting is not our speciality. We are making the best of it and we find that

each new day is more special than the last. The doctor told Fonsie that if he

did not quit smoking (it was masking his symptoms) that he would be dead by now.

I know this has been a long posting, but forgive me as it is my first. The rest

should be shorter. Updates to my caregiver stories will be shorter. Thanks

y'all for listening. Tennessee for 15 years. Upstate ny for 31 Judy and

fonsie

>

[Guest guest]

Thanks Vicky for your support. I have not been able to answer many posts

because I am pretty busy and pretty tired most of the time. I manage the house

and take care of 2 dogs (an 11 lb. chinese crested and a 40 lb yellow lab

puppy?). They are a handful. We have six acres and spring is coming so it will

soon be time to mow and I am allergic to mold so I will have to wear a mask or

suffer arrgggg. Yes fonse is lucky that he quit and now he is on the warpath to

get everyone else to quit. Nothing like a reformed smoker LOL. I love this

group even if I can only look at the posts, I get a lot of info from everyone.

The big thing I see is the disparity of side effects from one med to another.

Gleevec does not bother my husband and yet it gives severe sides to many other

people and they have to move on to other meds. So it is not the fix all end all

to everyone. My eyes are opening now. Thanks guys. Judy

-- In , " Schepman " <vickistu@...> wrote:

>

> Hi Judy and Fonsie,

> Welcome! Lots of people who went back to their own diagnosis when they read

your post. I certainly did, and mine was just a couple of years ago.

>

> I know it is hard and scary but you are doing great. The good news is that

now your husband gets to handle all this as a nonsmoker, which I am sure is much

healthier and better for him too. It was good that he quit when he did.

>

> This group is a wonderful one! They will bring you up when you're down and

help you when you don't know what is going on. THere are wise people who will

give you information when you can't figure out your lab tests, and give you good

advice when you don't know what your next step should be.

>

> We are all walking the same path you are, so enjoy the fellowship.

>

> Vicki

>

>

> >

> > Hi I am new here and here is our story:

> >

> > On 12/24/08 my husband quit smoking after 51 years. Shortly after that the

symptoms came out -- weight loss, exhaustion, night sweats, etc. He got

bronchitis twice. We did not know. On 1/28/09 his stomach protruded out and he

was so uncomfortable he could no longer work. He developed a cough so bad he

could hardly breath. I found him a community health doc for a $5.00 visit as he

is a contractor with no insurance. The doc felt his stomach and sent him the

following Mon for a CT Scan (normally 1200 but for a disc. $300 thank god). The

cat scan took 15 mins and while we had a sandwich across the street we got a

call from Dr. Burke's to come back in. He told us the news was bad, it was

either Leukemia vs. Lymphoma and to see an Oncologist right away. He made the

appt for Dr. Shih at TN Oncology (affiliated with Cannon Cancer Centers

here in TN) for 2/12/09. I went about telling his 2 daughters (49 and 31) the

news, they took it bad, but I told them that we just got married 12/29/08 and to

not throw dirt on him yet, cuz we can beat this. Then they got the right

attitude. We went to the oncology appt. 2/12 and Dr. Shih said his white blood

cell count was 500,000 and it should be 4.5 5000 and he wanted to treat him on

an inpatient basis to control his electrolytes while he got to the bottom of

what exact type of Leukemia he had. We admitted him to St. hospital that

day. Well I am amazed. He underwent Leukophoresis for 2 days while there.

They literally took the " sludge " blood (after giving him 2 units of healthy

blood) out and pulled out white blood cells, sending back the healthier blood to

his body. After 2 treatments, his blood cell count was 250,000. Dr. Shih put

him on Hydrea and Gleevec and when he left St. on 2/19 his count was at

230,000. He left on Hydrea only 2 x a day because Gleevec is so expensive and

we were waiting on approval for financial aid from Novartis for free Gleevec,

however, when we saw Dr. Shih a week later, Fonsie's blood was down to 65,000

and dropping. By that time we had received approval and our first shipment of

Gleevec. Fonsie now takes 400mg Gleevec once daily and only sees Dr. Shih once

a month. He continues to get better every day. We hope to have him in

remission soon and in full cytogenic remission after that. Our financial

situation is kinda crazy now even though I am applying for help and Fonsie has

applied for social security disability, we have not heard yet on the outcome and

waiting is not our speciality. We are making the best of it and we find that

each new day is more special than the last. The doctor told Fonsie that if he

did not quit smoking (it was masking his symptoms) that he would be dead by now.

I know this has been a long posting, but forgive me as it is my first. The rest

should be shorter. Updates to my caregiver stories will be shorter. Thanks

y'all for listening. Tennessee for 15 years. Upstate ny for 31 Judy and

fonsie

> >

>

[Guest guest]

Hi Judy and Fonse - welcome to our exclusive club LOL. Judy I thought if you

find 2 dogs hard to care for, you can come and visit my place.. I breed and

show Labradors and have 10 labs, 3 sheepdogs and 2 litters of puppies due

shortly! We live on 40 acres with a large garden and I work full time and am

also the carer of my husband who had a stroke last September! I wish he had

got CML instead of a stroke - he had smoked for 40 years + and as a result

his BP was sky high and had high cholesterol (he is 55 and I'll be 52 this

year), he is unable to drive still and finds that very difficult living

miles from anywhere - or as we say in OZ.. " living in the sticks " , some

impolite city orientated friends actually say " bumfarknowhere " LOL.

I can sympathise with the mask as when we showed our ponies, I was very

allergic and when clipping, brushing, rugging, cleaning out stables etc, had

to use a mask and goggles and take antihistamines and eyedrops.

Life will get better, we all struggle at first and it must be awful for you

in the US with the way your medical system is set up. In Australia we have

Medicare and I can remember when my husband had CT scans on his carotids and

brain, it cost $660 and we had to pay $300 after Medicare - I shudder to

think what it would have cost in the US. Now he is on a disability support

pension and most medical treatment is basically free (for both of us now)

and our prescription meds only cost $5.40 as opposed to $34.60.

Your husband is very lucky he is not having many side effects - anecdotally

we women do much worse. As a carer you do feel the brunt of it at times and

I'm sure talking to the Leukaemia foundation over there will help a lot and

their social workers can help you both work through it.

Regards,

from Down Under

#1149 Zavies Zero Club

Dx: 25/07/07

Commenced Glivec 400mg 27/9/07

Changed to Tasigna 800mg 3/8/08

PCRs:

23/01/08 - 13.01 %

14/04/08 - 0.08 %

12/05/08 - 0.02% (Glivec 200mg)

06/08/08 - 0.09 % (commenced Tasigna)

30/09/08 - 0.18 %

19/12/08 - 0.00%

From: [mailto: ] On Behalf Of

esnofla@...

Sent: Saturday, 14 March 2009 12:28 AM

Subject: [ ] Re: My husband's diagnosis and our story

Thanks Vicky for your support. I have not been able to answer many posts

because I am pretty busy and pretty tired most of the time. I manage the

house and take care of 2 dogs (an 11 lb. chinese crested and a 40 lb yellow

lab puppy?). They are a handful. We have six acres and spring is coming so

it will soon be time to mow and I am allergic to mold so I will have to wear

a mask or suffer arrgggg. Yes fonse is lucky that he quit and now he is on

the warpath to get everyone else to quit. Nothing like a reformed smoker

LOL. I love this group even if I can only look at the posts, I get a lot of

info from everyone. The big thing I see is the disparity of side effects

from one med to another. Gleevec does not bother my husband and yet it gives

severe sides to many other people and they have to move on to other meds. So

it is not the fix all end all to everyone. My eyes are opening now. Thanks

guys. Judy

> >

> > Hi I am new here and here is our story:

> >

> > On 12/24/08 my husband quit smoking after 51 years. Shortly after that

the symptoms came out -- weight loss, exhaustion, night sweats, etc. He got

bronchitis twice. We did not know. On 1/28/09 his stomach protruded out and

he was so uncomfortable he could no longer work. He developed a cough so bad

he could hardly breath. I found him a community health doc for a $5.00 visit

as he is a contractor with no insurance. The doc felt his stomach and sent

him the following Mon for a CT Scan (normally 1200 but for a disc. $300

thank god). The cat scan took 15 mins and while we had a sandwich across the

street we got a call from Dr. Burke's to come back in. He told us the news

was bad, it was either Leukemia vs. Lymphoma and to see an Oncologist right

away. He made the appt for Dr. Shih at TN Oncology (affiliated with

Cannon Cancer Centers here in TN) for 2/12/09. I went about telling his 2

daughters (49 and 31) the news, they took it bad, but I told them that we

just got married 12/29/08 and to not throw dirt on him yet, cuz we can beat

this. Then they got the right attitude. We went to the oncology appt. 2/12

and Dr. Shih said his white blood cell count was 500,000 and it should be

4.5 5000 and he wanted to treat him on an inpatient basis to control his

electrolytes while he got to the bottom of what exact type of Leukemia he

had. We admitted him to St. hospital that day. Well I am amazed. He

underwent Leukophoresis for 2 days while there. They literally took the

" sludge " blood (after giving him 2 units of healthy blood) out and pulled

out white blood cells, sending back the healthier blood to his body. After 2

treatments, his blood cell count was 250,000. Dr. Shih put him on Hydrea and

Gleevec and when he left St. on 2/19 his count was at 230,000. He

left on Hydrea only 2 x a day because Gleevec is so expensive and we were

waiting on approval for financial aid from Novartis for free Gleevec,

however, when we saw Dr. Shih a week later, Fonsie's blood was down to

65,000 and dropping. By that time we had received approval and our first

shipment of Gleevec. Fonsie now takes 400mg Gleevec once daily and only sees

Dr. Shih once a month. He continues to get better every day. We hope to have

him in remission soon and in full cytogenic remission after that. Our

financial situation is kinda crazy now even though I am applying for help

and Fonsie has applied for social security disability, we have not heard yet

on the outcome and waiting is not our speciality. We are making the best of

it and we find that each new day is more special than the last. The doctor

told Fonsie that if he did not quit smoking (it was masking his symptoms)

that he would be dead by now. I know this has been a long posting, but

forgive me as it is my first. The rest should be shorter. Updates to my

caregiver stories will be shorter. Thanks y'all for listening. Tennessee for

15 years. Upstate ny for 31 Judy and fonsie

> >

>

[Guest guest]

Dear

 

Thanks so much for your note, it was a real " inspiration " to me.  They say when

you think you have it bad, someone always has it worse, and believe me, it seems

you do have it worsse.  Even though you have so many animals to take care of,

you must love them sooo much, I know we love ours even though they are too smart

and a bit pain in the bootay. 

 

Yeah the allergies are enough to drive me " mad " some days.  The sneezing, itchy

eyes and throat just annoy the crap out of me but I " deal " with it.  I know

Fonsie has it much worse than me, so I have a " no whining " policy.  I just get

my shots, take the medicine and keep looking at how brave he is, and know how

lucky I am to just be allergic.  You are sooooo " brave and strong " to keep up

with all of that and care for your husband too, I am not worthy.  You are

AMAZING.  Keep it up girl!!!  You make us all proud.  I am sure there are days

when you feel bad, and on those days, just remember, that if you don't take care

of yourself, who's gonna be there to take care of them?  It is not only your

right to be good to yourself, but your responsibility, so take a nap or a bubble

bath, whatever it takes to get you through a day girl.  Don't try to be

superwoman.  Sounds, though like you have to be. 

 

Just a note on Fonse's progress, he saw Dr. Shih last Thurs. and his blood count

went down from 500,000 on 1/28/09 to 5,000 now and Dr. said that is normal and

Gleevec has him in remission.  In 2 months he will go to hosp. to get bone

marrow biopsy to check for cytogenic remission.  I am ecstatic. 

 

As for expenses, his disability was approved but don't get it for 5 mo. and we

are trying to get the state medicaid insurance.  We have an appt. today. 

Hopefully everything works out.  We have a lot of people pulling, praying,

chanting, whatever for us, so I think it will.  I am an optimist and always look

on bright side.  I have a friend running a marathon in SanFrancisco for LLS who

will wear Fonsie's name on a ribbon in his honor and I think that is cool.  She

has a website and is taking donations for her team in training to benefit the

LLSociety.  I would post it here but I do not know how people feel about that

here.  I have a web site where I sell Tupperware online and you can look at it

to see my picture but don't have to buy if not want to.  I am on the bio page

and full pic on testimonial page.  It is www.my2.tupperware.com/esnofla   Just

click there and you should go to it. 

 

Fonsie and I have always wanted to visit Austrailia and if we ever win the

lottery maybe we will fly out there and visit you.  You sound so nice.  I am 51

years old and Fonse is 61.  We just got married after 20 years.  What a long

engagement but we were both divorced before.

 

Sorry this was so long.  Take care.  Hugs     Judy Zoglio

From: Malseed <rodorbal@...>

Subject: RE: [ ] Re: My husband's diagnosis and our story

Date: Friday, March 13, 2009, 6:22 PM

Hi Judy and Fonse - welcome to our exclusive club LOL. Judy I thought if you

find 2 dogs hard to care for, you can come and visit my place.. I breed and

show Labradors and have 10 labs, 3 sheepdogs and 2 litters of puppies due

shortly! We live on 40 acres with a large garden and I work full time and am

also the carer of my husband who had a stroke last September! I wish he had

got CML instead of a stroke - he had smoked for 40 years + and as a result

his BP was sky high and had high cholesterol (he is 55 and I'll be 52 this

year), he is unable to drive still and finds that very difficult living

miles from anywhere - or as we say in OZ.. " living in the sticks " , some

impolite city orientated friends actually say " bumfarknowhere " LOL.

I can sympathise with the mask as when we showed our ponies, I was very

allergic and when clipping, brushing, rugging, cleaning out stables etc, had

to use a mask and goggles and take antihistamines and eyedrops.

Life will get better, we all struggle at first and it must be awful for you

in the US with the way your medical system is set up. In Australia we have

Medicare and I can remember when my husband had CT scans on his carotids and

brain, it cost $660 and we had to pay $300 after Medicare - I shudder to

think what it would have cost in the US. Now he is on a disability support

pension and most medical treatment is basically free (for both of us now)

and our prescription meds only cost $5.40 as opposed to $34.60.

Your husband is very lucky he is not having many side effects - anecdotally

we women do much worse. As a carer you do feel the brunt of it at times and

I'm sure talking to the Leukaemia foundation over there will help a lot and

their social workers can help you both work through it.

Regards,

from Down Under

#1149 Zavies Zero Club

Dx: 25/07/07

Commenced Glivec 400mg 27/9/07

Changed to Tasigna 800mg 3/8/08

PCRs:

23/01/08 - 13.01 %

14/04/08 - 0.08 %

12/05/08 - 0.02% (Glivec 200mg)

06/08/08 - 0.09 % (commenced Tasigna)

30/09/08 - 0.18 %

19/12/08 - 0.00%

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

esnoflabellsouth (DOT) net

Sent: Saturday, 14 March 2009 12:28 AM

groups (DOT) com

Subject: [ ] Re: My husband's diagnosis and our story

Thanks Vicky for your support. I have not been able to answer many posts

because I am pretty busy and pretty tired most of the time. I manage the

house and take care of 2 dogs (an 11 lb. chinese crested and a 40 lb yellow

lab puppy?). They are a handful. We have six acres and spring is coming so

it will soon be time to mow and I am allergic to mold so I will have to wear

a mask or suffer arrgggg. Yes fonse is lucky that he quit and now he is on

the warpath to get everyone else to quit. Nothing like a reformed smoker

LOL. I love this group even if I can only look at the posts, I get a lot of

info from everyone. The big thing I see is the disparity of side effects

from one med to another. Gleevec does not bother my husband and yet it gives

severe sides to many other people and they have to move on to other meds. So

it is not the fix all end all to everyone. My eyes are opening now. Thanks

guys. Judy

> >

> > Hi I am new here and here is our story:

> >

> > On 12/24/08 my husband quit smoking after 51 years. Shortly after that

the symptoms came out -- weight loss, exhaustion, night sweats, etc. He got

bronchitis twice. We did not know. On 1/28/09 his stomach protruded out and

he was so uncomfortable he could no longer work. He developed a cough so bad

he could hardly breath. I found him a community health doc for a $5.00 visit

as he is a contractor with no insurance. The doc felt his stomach and sent

him the following Mon for a CT Scan (normally 1200 but for a disc. $300

thank god). The cat scan took 15 mins and while we had a sandwich across the

street we got a call from Dr. Burke's to come back in. He told us the news

was bad, it was either Leukemia vs. Lymphoma and to see an Oncologist right

away. He made the appt for Dr. Shih at TN Oncology (affiliated with

Cannon Cancer Centers here in TN) for 2/12/09. I went about telling his 2

daughters (49 and 31) the news, they took it bad, but I told them that we

just got married 12/29/08 and to not throw dirt on him yet, cuz we can beat

this. Then they got the right attitude. We went to the oncology appt. 2/12

and Dr. Shih said his white blood cell count was 500,000 and it should be

4.5 5000 and he wanted to treat him on an inpatient basis to control his

electrolytes while he got to the bottom of what exact type of Leukemia he

had. We admitted him to St. hospital that day. Well I am amazed. He

underwent Leukophoresis for 2 days while there. They literally took the

" sludge " blood (after giving him 2 units of healthy blood) out and pulled

out white blood cells, sending back the healthier blood to his body. After 2

treatments, his blood cell count was 250,000. Dr. Shih put him on Hydrea and

Gleevec and when he left St. on 2/19 his count was at 230,000. He

left on Hydrea only 2 x a day because Gleevec is so expensive and we were

waiting on approval for financial aid from Novartis for free Gleevec,

however, when we saw Dr. Shih a week later, Fonsie's blood was down to

65,000 and dropping. By that time we had received approval and our first

shipment of Gleevec. Fonsie now takes 400mg Gleevec once daily and only sees

Dr. Shih once a month. He continues to get better every day. We hope to have

him in remission soon and in full cytogenic remission after that. Our

financial situation is kinda crazy now even though I am applying for help

and Fonsie has applied for social security disability, we have not heard yet

on the outcome and waiting is not our speciality. We are making the best of

it and we find that each new day is more special than the last. The doctor

told Fonsie that if he did not quit smoking (it was masking his symptoms)

that he would be dead by now. I know this has been a long posting, but

forgive me as it is my first. The rest should be shorter. Updates to my

caregiver stories will be shorter. Thanks y'all for listening. Tennessee for

15 years. Upstate ny for 31 Judy and fonsie

> >

>