Update

October 11, 2004

I am sorry to

hear you are not feeling well! I hope it gets resolved soon!

Re:

update

,

Sounds like you are doing great! I am so

pleased to hear that.

As for me, I'm having a bit of trouble. When

I got up this morning,

I felt great. By this eve., I took a turn

for the worse. I had 1 cup

of soup at 7 PM. It is now 11:30 PM and I

can't sleep because my

stomach is solid just above my belly button, as if

it is not moving

down right. I've been trying to walk it off

and then lay down, put

it is painful! Pain radiating to my

shoulders and neck. My husband

had SX on his stomach exactly 19 years ago to the

day that I had mine

and I remember him having this problem with the

upper part being hard

and his neck, shoulder's and back having pain from

it.

I have to call my doctor tomorrow for a follow up

and I am anxious to

hear what he says. I want to be moving

toward less pain, not more!

Rita

October 11, 2004

So glad it all went so well ! Take it easy and may you feel fit very soon.

Joan

update

I do not have much energy for writing out the whole story. But all went well. My surgery only took an hour! I was up and out of bed about 6 hours after surgery and late that same night I was going to the bathroom alone. I went home Friday at 8pm; my surgery was Thursday at 11am. I am now only taking painkillers at night. Today I even took a shower. I am pretty much on the clear liquid diet plus a few soft foods… jell-o, broth, Ensure, apple juice, and applesauce. I just added applesauce today. I think that is it that I have tried, even though my allowed list is much longer. Anyways, I am getting around at home quite well. I do get tired easily though. I am even able to change my daughter’s diapers as long as she climbs up on the couch for me. Slowly I have been doing more and more for my daughter without help, since tomorrow will be my first day on my own again with . I am a stay-at-home-mom. I will have help coming throughout the day just in case but I think I shall do okay. I am a bit sore but healing fine.

Please ask any questions you want. When I manage to check email I will answer them to the best of my ability.

Thank you everyone for your help! It was great!

, in PA

October 11, 2004

, so great to hear this news! Keep us posted on your progress!Wow, we've had lots of great success stories here lately -- if I've missed anyone, it hasn't been intentional (I've been swamped lately). Congrats to all the new "baby myotomies"!Debbi in Michigan

October 11, 2004

Eating is going

well. I am still in the very soft and liquids. But it is well. The only thing

that sucks about not eating any solids is that the BMs are NOT solid either.

YUCK!! But SO worth it in the end.

Re:

update

, so great to hear this news! Keep us posted on your

progress!

Wow, we've had lots

of great success stories here lately -- if I've missed anyone, it hasn't been

intentional (I've been swamped lately). Congrats to all the new

" baby myotomies " !

Debbi in Michigan

December 28, 2004

Hi Holly,

I'm so sorry you are having all these problems. I have 2 things I would like

to suggest/ask;

Do you have one of the antennas for the stimulator?

Why don't you call Medtronics yourself and possibly you could have the info,

instead of depending on one of the nurses doing it between personal phone

calls

Try not to worry too much about the other things, and just let me know if

you need some kind of help.

Feel better,

Jeff-NY/PA

jeffreyscharff@...

Moderator

" Knowledge speaks,

but wisdom listens. " Jimi Hendrix

>From: " hollym262002 " <hollym262002@...>

>Reply-Stimulator

>Stimulator

>Subject: update

>Date: Tue, 28 Dec 2004 04:46:42 -0000

>

December 31, 2004

Hello Jeff and Holly. I just wanted to report last thursday I had my third

Spinal Cord Implant. We added another terminal to the internal Battery and

added a lead to cover low back and right leg. I now have 3 leads 1 covers left

leg only placed at t-11 second lead placed mid back area. and now newest lead

covers right leg only. Even while Doctor doing surgerry He had terible time

re Tunneling through all Scar tissue. I felt it for 4 days afterwards. I am

pround to Annouce I am at level 3 pain. Praise the Lod!!!! I haven't got

this much relief since injury in 1999. Looking forward to getting rid of all

pain meds. Also Myself my Wife 2 boys bought a new house in Middletown

settlement is Jan 5 I hope everyone has a good news year, Mike

update

>Date: Tue, 28 Dec 2004 04:46:42 -0000

>

January 1, 2005

Mike,

That's great news on all fronts. Congrats on the major pain relief and good

luck in the new house.

Happy New Year to you and your family.

Jeff-NY/PA

jeffreyscharff@...

Moderator

" Knowledge speaks,

but wisdom listens. " Jimi Hendrix

>From: " Maxey " <mike2boys@...>

>Reply-Stimulator

><Stimulator >

>Subject: Re: update

>Date: Fri, 31 Dec 2004 16:57:44 -0500

>

January 25, 2005

Hi Holly,

That's really amazing news on your mom. Hopefully it's a second chance

and will last for a while.

Also (no less so) glad to hear that you're healing well and of course

your reward for that is surgery which will not be all that pleasant

although the end result will :-)

What's with the neuro?? He hasn't had time, how long has it been, that's

not something you should want to hear from your doctor. I know it's not

your nature but maybe you should try being a bit more forceful when you

call, like " how long should I have to wait!! " or something.

Please keep us posted.

As long as we're discussing updates, I am doing great with the

stimulator. My results have really been amazing, and I am a couple of

weeks away from being completely done with all opiates. My average day

is 0-3 and before the surgery (12/3/04) it was 7.5-9, with a lot of

meds.

Anyone else want to let us know how you're doing?

Take care,

Jeff-NY/PA

Moderator

update

Dear Friends,

Hi I am sorry that you haven't heard from me in a while my Mom went

into the hospital Jan.11 the night of my 29th b-day. If you know of

the Mormon faith people get blessings when they are sick. She recived

one once she was placed in the crtical care unit. It said her time on

earth is close to an end. I didn't want to believe it but needed to

except it because it's God's will. We got to take her home friday we

found out that it's seizures. Well later that day she started up again

called the doctor that night. Than admitted to a different hospital

saturday morning where the neurologist saw her in the ER. I hope and

pray she stays around to see me get married. Oh she is home now and I

am helping her with cooking etc... She came home that coming monday

she is on better medication and pray that it keeps working great for

her.

As for me with my headaches my neurosurgeon hasn't had time to call

though I hope he calls me tommrow. I see my orthopedic doctor for the

shoulder fractures to see if they have heald to start therapy. So than

I can have surgery on my right one.

I hope and pray that all of you are doing well please let me know if

there is anything that I can do for you. Keep posting I enjoy reading

what you have to say.

take care

Holly Moderator

_____

January 26, 2005

--- Hi Everyone,

I called the doctor's office today and they told me maybe it would be

best for me to come in and see him since I am in my third week trying

to talk to him. However I called just a bit ago to talk to his

assistant he was in surgery and is going to call me back. I am out of

my sling and in more pain with out it I can tell I am not going to

like surgery on my right due to limited rom having to teach your arm

to work right again. I am thinking I may have missed up my upper back

cause after the fall I got needle prickly pain it hasnt come back for

a while but when my orthopedic was checking my scapula on the left it

woudn't contract and the right poked out he said. So I will let you

know once I know about things.

Jeff congradulations on your decrease in meds and success with the

stimulator. Also Welcome new members please share your stories or

concerns.

take care

Holly

moderator

In Stimulator , " Scharff " <jeffreyscharff@m...>

wrote:

> Hi Holly,

>

> That's really amazing news on your mom. Hopefully it's a second chance

> and will last for a while.

>

> Also (no less so) glad to hear that you're healing well and of course

> your reward for that is surgery which will not be all that pleasant

> although the end result will :-)

>

> What's with the neuro?? He hasn't had time, how long has it been, that's

> not something you should want to hear from your doctor. I know it's not

> your nature but maybe you should try being a bit more forceful when you

> call, like " how long should I have to wait!! " or something.

>

> Please keep us posted.

>

> As long as we're discussing updates, I am doing great with the

> stimulator. My results have really been amazing, and I am a couple of

> weeks away from being completely done with all opiates. My average day

> is 0-3 and before the surgery (12/3/04) it was 7.5-9, with a lot of

> meds.

>

> Anyone else want to let us know how you're doing?

>

> Take care,

>

> Jeff-NY/PA

>

> Moderator

>

> update

>

> Dear Friends,

>

> Hi I am sorry that you haven't heard from me in a while my Mom went

> into the hospital Jan.11 the night of my 29th b-day. If you know of

> the Mormon faith people get blessings when they are sick. She recived

> one once she was placed in the crtical care unit. It said her time on

> earth is close to an end. I didn't want to believe it but needed to

> except it because it's God's will. We got to take her home friday we

> found out that it's seizures. Well later that day she started up again

> called the doctor that night. Than admitted to a different hospital

> saturday morning where the neurologist saw her in the ER. I hope and

> pray she stays around to see me get married. Oh she is home now and I

> am helping her with cooking etc... She came home that coming monday

> she is on better medication and pray that it keeps working great for

> her.

>

> As for me with my headaches my neurosurgeon hasn't had time to call

> though I hope he calls me tommrow. I see my orthopedic doctor for the

> shoulder fractures to see if they have heald to start therapy. So than

> I can have surgery on my right one.

>

> I hope and pray that all of you are doing well please let me know if

> there is anything that I can do for you. Keep posting I enjoy reading

> what you have to say.

>

> take care

> Holly Moderator

>

> _____

>

March 7, 2005

Hi Jess,

Sorry to hear that things just aren’t

looking up for you yet. Hopefully soon. So this surgery that you’re

waiting for…is it just the lap myotomy? Or is it something else? Its

been a while since you’ve last posted and I’ve lost track. I remember

your lung collapsing situation, and how much you love your GI J but the surgery….?

Keep us posted on your situation. I’m

sure theres someone out there who’ll appreciate all that you have going

on (as much as you don’t! J )

Take care,

in BC

Update

I know I haven't been around much. I've been

pretty even keeled on

symptoms so I didn't think I had much to offer and

wasn't looking for

much.

WELL, the old esophegus is back at it again. I

found out yesterday

that in November (way on back in november) I had

aspiration pneumonia,

diagnosed through a CT scan that was a follow up

to a lung collapse.

It's on the opposite side as the collapsed lung.

My pulmonoligist

neglected to tell me about it however.

So here we are in March and my GI, the one that I

hate so much, was

looking in on me, probably to see if I'd gotten a

dif. GI or anything,

and she call's my GP, franctic, telling her I'm

about to die and

stuff. They want me to come in immediately to

discuss surgery. I told

my GP I wasn't going back to that doctor, gave her

the name of the guy

I'd heard was our area specialist. Apparently I

know how to pick 'em

when I have a say in it, he's the regional GI head

for UC , lol.

I got the boss man on my side now. So now I'm

awaiting an 'emergency

consultation', another CT, and I'm heading out on

vacation after that

no matter what they say cause if they're going to

have me go under the

knife, I'm taking my vacation first.

I'm also awaiting a consultation for pulmonary

surgery & they said the

CT scan showed another kidney stone, yay.

To top all that off, I feel like crap right now.

Probably stress

induced from all this heavy news.

Chicken and stars anyone? Goes down pretty

smoothly... take out the

chicken tho

-Jess

March 30, 2005

Diane1B,

I am sorry to read of your losses. You have a very

full plate even without the upcoming surgery. Just

wanted to let you know that the notes from my surgery

in November did indicate they fixed my 22 degree

sagittal imbalance during the posterior surgery. Take

care of yourself. June will be here before you know

it. -Kathi

--- Diane1B@... wrote:

> I was in touch with my surgeon's office today & his

> nurse Lindy already

> had anticipated that with our plates so full right

> now that it would be

> next to impossible & not in my best interests to

> have the Revision April

> 27th, so she rescheduled me for June 7th. I am a

> tad upset as I had 2

> surgery dates a week apart & Dr Boachie had told us

> he would not know

> for sure if I needed 2 surgeries until he was

> actually inside, then he

> would decide. Now his nurse is saying he has more or

> less decided he can

> do the whole Revision in one surgery from the

> back.....now I never have

> had Scoliosis & developed the Flat Bk from an

> Ant/Post Fusion I had in

> 85 where he used bone grafts & Harrington Rods &

> even though I was no

> better & made him remove them in 88, the damage was

> already done.

__________________________________________________

March 31, 2005

Diane,

I am so sorry about your mother in law's death, and that you have to

postpone your surgery. You have had so much tragedy and heartache

lately; it's just so sad. I wish you strength for the coming days,

and, as always, good results from your surgery.

I know you said you were scheduled for a bunch of tests. Did Dr. B.

get results on any of them that might have changed his mind into

doing the surgery only posteriorly? Hopefully, he will answer all

your questions to your satisfaction before your date.

Take care,

loriann

> First off I would like to welcome Carol to the group, Carol I am

very

> sorry you have a need for a group like this, but very grateful to

> , our Founder, as without it, I for one would have been

more

> lost than I already was.

> Thank you Llweyn for your kind post & very helpful words of wisdom.

> , where in Colorado do you live? I lived in Windsor for a

few yrs

> & it is 60 miles Northeast of Denver, 15 miles from Loveland, 15

miles

> from Fort , and 15 miles from Greely. I truly loved it out

there

> but due to falling & having to have my 2nd myelo & lami, I moved

back

> east to be near my family. Now that our children are grown, Jim &

I

> are seriously considering moving west within the next couple of yrs.

> Jim's Mother has left us her house & land & we are quite overwhelmed

> with having to clean out a house my Father in Law built & they

lived in

> for 60 yrs. They also were from the WW II generation & NEVER threw

> anything out so we have quite a job ahead of us. With my back as

bad as

> it now is, I cannot be of any real help unless it is a chore that

I can

> do sitting as I cannot stand for 10 minutes without getting severe

back

> & hip pain.

> I was in touch with my surgeon's office today & his nurse Lindy

already

> had anticipated that with our plates so full right now that it

would be

> next to impossible & not in my best interests to have the Revision

April

> 27th, so she rescheduled me for June 7th. I am a tad upset as I

had 2

> surgery dates a week apart & Dr Boachie had told us he would not

know

> for sure if I needed 2 surgeries until he was actually inside, then

he

> would decide. Now his nurse is saying he has more or less decided

he can

> do the whole Revision in one surgery from the back.....now I never

have

> had Scoliosis & developed the Flat Bk from an Ant/Post Fusion I had

in

> 85 where he used bone grafts & Harrington Rods & even though I was

no

> better & made him remove them in 88, the damage was already done.

> DR Boachie has not as yet seen my latest MRI which was taken the

end of

> Feb & the myelo & Ct scans he saw were a yr old in Oct so I am

REALLY

> going to make sure I have a good long talk with him before the end

of

> May, once he has seen my new myelo/ct scans & MRI films to make

SURE

> that if one surgery will correct my 19cm Saggital Imbalance, I

will not

> be bk in his office a couple of yrs down the line, after 4

laminectomys

> & 2 Fusions, I truly want & hope this will be the last one I have

to go

> through.

> I am a bit comforted as Dr Neuwirth, & Dr Dennis Crandall,

both

> experienced Revision Surgeons also said they might be abel to fix my

> problem with one Posterior Surgery. I did voice my concerns to

Lindy &

> she assured me that once he was in, if I needed a 2nd surgery it

would

> be done 1 week later & then after about 2 weeks in the hospital he

has

> plans to send me to Good Sheperd Rehab Hospital in town PA,

about

> 30 miles from my home.

> So this week so far has been very busy making the Funeral

Arrangements

> for my husbands dear Mother.

> I agree with you whole heartdely, as long as there are

spines,

> there will be a need for exceptional Spinal Surgeons.

> Ann, I admire your ability to go bk to wk even part time btw your

> surgeries, and I really can relate as I was a single parent of 2

sons

> for 8 yrs & I was bk to full time nursing 3 months after my first 2

> lami's.

> Looking bk I do not know if it was the wisest course of action but

I was

> always a Type A personality & sitting home longer than that just

about

> drove me bonkers. Since I have gone down hill so much this past

yr it

> is driving me half crazy just sitting most of the time.

> Thank you all for being there for me, through some of the most

trying,

> painful times of my life, since Nov 03 when we lost our youngest

son it

> has been one loss after another & having something always come up

that

> has forced me to reschedule the surgery I so badly need would have

been

> so much harder to deal with.

> Love & Blessings To Everyone,

> Diane

May 16, 2005

Dear Carol V,

I'm so sorry that you are in so much pain, I've been there and know how the pain can take up your entire life.I just wanted to give you another thought on the surgical outcomes that people have. Many in this group have had less than perfect outcomes to their surgeries, some yes, maybe worse off, but there are some like me who are doing extremely well. I would venture to say that almost all here are glad in some way that they have had the surgery.I would also say that many who have done well following surgery don't tend to stay with the group, they get busy living their lives and don't contribute anymore, so the listing of outcomes may lean a little more toward the members who are struggling. One of the best things about this group is the support and advise given, and the ones who need it most are the ones who are struggling. I stay with the group to show that good outcomes are possible, and to be a support. I am two years post -op and doing well. I'm fused T-1 to the sacrum, Have three rods, 25 some screws, and two bolts. I can't bend, but I can live my day to day life with zero pain, can walk for as long as I want, and can stand for long periods, and look much better. My journey took one decompression surgery and two full on revisions, and yes the surgeries were a struggle, but I'm so glad I did it. Since we all are different, and no one can tell you for sure how well you will do, it's a thing of faith. I was so tired of the pain, that I took the shot at getting better. I had my down moments when I had complications, but I just went on , knowing my doc would work to get me where I am now. I credit him and his skills( Dr. Anant Kumar of Denver), and my own never give up attitude. When you find a doc, ask to speak with former patients that have had the same procedure, ask about his complication rates, it's best to do your homework, and then do what best for you. Hope this helps!

Colorado Springs

Update

I haven't been able to get on this site this week because I had a dramatic increase in the amount of pain in my back toward the end of the week. By Friday, I could only be "up" about an hour before I had to go lie down. Nothing would ease the sharp pain but lying down. Then, Saturday I was having that "aching in my back" pain that I get from lying around too much! Can't win! So I went to the drugstore and bought an over-the-counter lumbar back brace and it seems to help. Any way, the Ortho originally said they had no openings for the epidural until June 16-17, and I didn't know how I was going to make it that long--then Wed. his nurse called and said he had a cancellation for May 20. My oldest daughter is graduating from high school in less than 3 weeks, and I have a lot to do-can't get it done or make it through in all this pain! I'll see how this X-ray guided Epidural Cortisone Injection goes, and then I'll decide if I want to persue trying to get into Dr. Berven or Hu at UCSF. Since now I see they have a six month waiting list for appointments (according to this site)!!! But then on another posting here, I saw that the Ortho Surgery dept. at UCSF has been having Administrative problems according to one former patient, so is it still the best place to go? I'm torn persuing further medical intervention because of what I've read at this Feisty site, many who have had the revision surgery (or multiple surgeries) STILL HAVE CHRONIC PAIN and disability. So, why put myself through all that pain and torture if it isn't going to make me better? Right now I'm in pain, and it doesn't sound like the pain gets any better after surgery, either. It sounds like it's just a "lifelong burden us flatbackers have to bear". What is the best way to deal with it? I guess this is a question that someone needs to bring up and it needs to either be discussed or a "survey" done to see how many are truly better off after their revision surgeries? For me, the main issue is pain. I'm not bending forward THAT MUCH yet, but pain is my concern now and in the long run. Carol V. Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products.

October 18, 2005

Chonette:

I am fairly new to the group but have been reading posts for a couple of months.

I was diagnosed with CLL in May, 03 and completed six rounds of RF in July 05.

That was my first treatment. My WBC had risen over 300K which is what prompted

treatment. I am curious as to why you are opposed to the Fluderabine. Sometime

during my treatment I discovered that Fluderabine could hurt chances of a stem

cell transplant later, but my Doc said the amount I had gotten was small enough

to not hurt those chances. Is this why you are opposed to the Fluderabine?

I had a pretty easy time with the treatment, but the BMB three weeks after

treatment ended still indicated I had 10% CLL in the marrow. I was disappointed

with that result, but I started with 99%. I feel great but I always have. Before

treatment, during treatment, and now after treatment. I have poor communication

with my Oncologist who is new to me. The one I have now is different than the

one I had during treatment who left the facility. My next appointment with the

Oncologist is Dec 2nd.

I probably should just be grateful that I have had an easy time so far. I know

others have had failed treatments and treatments which caused severe side

effects. I have a question for anyone who might know on the list. The Oncologist

that I had during treatment said after the treatment that I had a " Complete

Clinical Remission " . But this came from him through his nurse as he was leaving.

I have looked for that definition and cannot find a clear one. But I can't

understand how a person can have a complete clinical remission but still have

10% in the marrow. Perhaps I am just a worrier since I feel good, but does

anyone have info on this?

Thanks so much.

Dave

update

Dear friends,

It has been a very active summer, and now that winter is near I am

sure we wil find more time spent indoors.

My computer crashed and I was without it for 2 weeks, but things are

getting back to normal, only that my address book was lost on the

crash, so now I have to start colecting them again, so please write

to me to make my life a bit easier.

I had the rest of the test done in September and overall I feel

relaxed about it.

Here is an extract from the letter I got from Dr. Hamblin about my

results.

The whole letter to my GP is two pages long so I think it would be

too much to post, but I found it very informative and useful.

I got a letter this evening from him saying he has spoken to my

insurance and it is very likely that they will pay for the

Chlorambucil/ Rituximab treatment.

I have not been able to read every post over the last few weeks, but

I understant there has been some post on the Acor list about low

doses chlorambucil and people asking about less toxic ways, I think

it is a good thing that such things are back on the table.

I have had a very hard time with my other consultand, she just does

not want to let it go to persuade me to have fluradabine or

Cyclophosphamide, in fact at our last meeting in September she

actually told me it was very frustruating for her that I did not want

to accept her recommendations, I went home in tears after such

stressful meeting.

Well here is the letter I got from Dr. Hamblin:

Dear Chonette

I have attached a copy of the letter to your GP that I have just

sent. You will see that your last blood count at Bournemouth was very

good, and there is no need for immediate treatment, but if you are

still determined not to have fludarabine, I think that you should try

the combination of chlorambucil and rituximab when you next need

treatment.

Extracts:

Test date: September 6, 2005

Full blood count: Hb 121 g/L; Lymphocyte count 8.8 x 109/L

(neutrophils 3.5); platelets 107 x 109/L.

IgVH: V2-05 100% homology (Unmutated).

CD38: 19% (normal up to 30%)

ZAP-70: 9% (normal up to 10%)

She has previously been tested as negative by FISH.

Although both the CD38 and ZAP-70 are negative, they are both at the

high end of normal.

Interpretation: Patients with unmutated IgVH genes have a median

survival of 8 years in our series. Those who are also CD38 negative

and ZAP-70 negative have a median survival of 15 years.

How should she be treated?

..........

Mrs is very reluctant to take chemotherapy, but would accept

low-dose chlorambucil. Although there is no track record in CLL, a

single small series of patients with low grade lymphoma showed a

promising response rate to the combination of chlorambucil plus

rituximab.

October 18, 2005

Checkj the ACOR list on . Read Dr. Terry Hamblin's posts. You " ll

get educated. Join

the ACOR group. Visit CLL.org also.

Ivan

--- Dave Pulley <BBbradydavid@...> wrote:

> Chonette:

> I am fairly new to the group but have been reading posts for a couple of

months. I was diagnosed

> with CLL in May, 03 and completed six rounds of RF in July 05. That was my

first treatment. My

> WBC had risen over 300K which is what prompted treatment. I am curious as to

why you are opposed

> to the Fluderabine. Sometime during my treatment I discovered that Fluderabine

could hurt

> chances of a stem cell transplant later, but my Doc said the amount I had

gotten was small

> enough to not hurt those chances. Is this why you are opposed to the

Fluderabine?

>

> I had a pretty easy time with the treatment, but the BMB three weeks after

treatment ended still

> indicated I had 10% CLL in the marrow. I was disappointed with that result,

but I started with

> 99%. I feel great but I always have. Before treatment, during treatment, and

now after

> treatment. I have poor communication with my Oncologist who is new to me. The

one I have now is

> different than the one I had during treatment who left the facility. My next

appointment with

> the Oncologist is Dec 2nd.

>

> I probably should just be grateful that I have had an easy time so far. I know

others have had

> failed treatments and treatments which caused severe side effects. I have a

question for anyone

> who might know on the list. The Oncologist that I had during treatment said

after the treatment

> that I had a " Complete Clinical Remission " . But this came from him through his

nurse as he was

> leaving. I have looked for that definition and cannot find a clear one. But I

can't understand

> how a person can have a complete clinical remission but still have 10% in the

marrow. Perhaps I

> am just a worrier since I feel good, but does anyone have info on this?

> Thanks so much.

> Dave

> update

>

> Dear friends,

> It has been a very active summer, and now that winter is near I am

> sure we wil find more time spent indoors.

> My computer crashed and I was without it for 2 weeks, but things are

> getting back to normal, only that my address book was lost on the

> crash, so now I have to start colecting them again, so please write

> to me to make my life a bit easier.

> I had the rest of the test done in September and overall I feel

> relaxed about it.

> Here is an extract from the letter I got from Dr. Hamblin about my

> results.

> The whole letter to my GP is two pages long so I think it would be

> too much to post, but I found it very informative and useful.

> I got a letter this evening from him saying he has spoken to my

> insurance and it is very likely that they will pay for the

> Chlorambucil/ Rituximab treatment.

> I have not been able to read every post over the last few weeks, but

> I understant there has been some post on the Acor list about low

> doses chlorambucil and people asking about less toxic ways, I think

> it is a good thing that such things are back on the table.

> I have had a very hard time with my other consultand, she just does

> not want to let it go to persuade me to have fluradabine or

> Cyclophosphamide, in fact at our last meeting in September she

> actually told me it was very frustruating for her that I did not want

> to accept her recommendations, I went home in tears after such

> stressful meeting.

> Well here is the letter I got from Dr. Hamblin:

> Dear Chonette

> I have attached a copy of the letter to your GP that I have just

> sent. You will see that your last blood count at Bournemouth was very

> good, and there is no need for immediate treatment, but if you are

> still determined not to have fludarabine, I think that you should try

> the combination of chlorambucil and rituximab when you next need

> treatment.

> Extracts:

> Test date: September 6, 2005

> Full blood count: Hb 121 g/L; Lymphocyte count 8.8 x 109/L

> (neutrophils 3.5); platelets 107 x 109/L.

> IgVH: V2-05 100% homology (Unmutated).

> CD38: 19% (normal up to 30%)

> ZAP-70: 9% (normal up to 10%)

>

> She has previously been tested as negative by FISH.

>

> Although both the CD38 and ZAP-70 are negative, they are both at the

> high end of normal.

>

> Interpretation: Patients with unmutated IgVH genes have a median

> survival of 8 years in our series. Those who are also CD38 negative

> and ZAP-70 negative have a median survival of 15 years.

>

> How should she be treated?

> ..........

> Mrs is very reluctant to take chemotherapy, but would accept

> low-dose chlorambucil. Although there is no track record in CLL, a

> single small series of patients with low grade lymphoma showed a

> promising response rate to the combination of chlorambucil plus

> rituximab.

>

October 19, 2005

Dear Dave,

Me no wanting fluradabine is a personal thing, I never wanted any

chemo at all, but agreed a low doses Chlorambucil, a subject very

well discused on this group in the past.

My personal views on chemotherapy have nothing to do with CLL.

The CLL Acor group is on the Acor.org no on as mentioned

by Ivan, it is also useful to read CLLtopics.org they have a lot of

info on remisions etc. also the stem cell subject is well documented

in both the Acor list and CLLTopics.

Although I got a young heart, I think I am too old to consider any

sort of transplants.

My phylosophy has always been a shor happy life better than a long

painful one.

I wish you a long term remission.

regards

chonette

Message: 1

Date: Tue, 18 Oct 2005 18:24:59 -0500

From: " Dave Pulley " <BBbradydavid@...>

Subject: Re: update

Chonette:

I am fairly new to the group but have been reading posts for a couple

of months. I was diagnosed with CLL in May, 03 and completed six

rounds of RF in July 05. That was my first treatment. My WBC had

risen over 300K which is what prompted treatment. I am curious as to

why you are opposed to the Fluderabine. Sometime during my treatment

I discovered that Fluderabine could hurt chances of a stem cell

transplant later, but my Doc said the amount I had gotten was small

enough to not hurt those chances. Is this why you are opposed to the

Fluderabine?

I had a pretty easy time with the treatment, but the BMB three weeks

after treatment ended still indicated I had 10% CLL in the marrow. I

was disappointed with that result, but I started with 99%. I feel

great but I always have. Before treatment, during treatment, and now

after treatment. I have poor communication with my Oncologist who is

new to me. The one I have now is different than the one I had during

treatment who left the facility. My next appointment with the

Oncologist is Dec 2nd.

I probably should just be grateful that I have had an easy time so

far. I know others have had failed treatments and treatments which

caused severe side effects. I have a question for anyone who might

know on the list. The Oncologist that I had during treatment said

after the treatment that I had a " Complete Clinical Remission " . But

this came from him through his nurse as he was leaving. I have looked

for that definition and cannot find a clear one. But I can't

understand how a person can have a complete clinical remission but

still have 10% in the marrow. Perhaps I am just a worrier since I

feel good, but does anyone have info on this?

Thanks so much.

Dave

Message: 2

Date: Tue, 18 Oct 2005 17:23:13 -0700 (PDT)

From: I G <toolman_1999@...>

Subject: Re: update

Checkj the ACOR list on . Read Dr. Terry Hamblin's

posts. You " ll get educated. Join

the ACOR group. Visit CLL.org also.

Ivan

April 23, 2006

HI Carol, glad to hear there might be someone a little closer to my eastern Oregpon home. I am very actively searching for a revisionsurgeon and would love to hear from you as to what you thought of Dr Hu. Go to Boise for mylegram in next few weeks and I will hear what those drs. have to say about my disaster. I havent had a mri since I have had flat back but I can't imagine even fitting in there.The Boise drs. said they couldn't see enough that I had to do the mylegram. The last ome I had was cervical and it was so painful. Please let us know what you thin of DrHu. What do you have to have done? Best regards and will be anxiously waiting to hear from you!!Carol <dcvaughan@...> wrote: I haven't posted in awhile, just been reading, but wanted to let everyone know that I got an appointment to

see Dr. Serena Hu on July 17th. I had gone to another orthopedist, and he could see right away that my situation was over his head, so I suggested the docs at UCSF, and suggested Dr. Hu or Berven. His gal got on it right away, and after seeing him on Apr. 4, I had an app't scheduled by Apr. 11th for July 17th. I think that was pretty fast!! I also asked him for a consult with a pain management doc, and I have that this Tues. Apr. 25th. The new doc said I need to find out exactly what--and where--the pain is coming from. I now know from getting my medical records from a year ago that I have flatback, degenerative disc disease and arthritis of the spine. I didn't have mylographic contrast done with my CT a year ago, so they can't rule out bulging discs, so maybe someone else may do a Mylogram in the near future? Maybe Dr. Hu? MRI's worry me because I couldn't stay still that long in a tube a few inches from my nose.

They'd have to knock me out or I won't do one. Carol V. (CA)

Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min with Messenger with Voice.

April 23, 2006

I just posted in reply to your other one, so sorry there might be

some duplication. I don't know what Dr. Hu may say. She may order

more tests, she may not. Or maybe this pain doc may. I have to check

if he's on my " preferred provider " list for my insurance tomorrow, or

they'll only pay 70%. I can't afford very much out of pocket expense.

Just the deductibles the beginning of the year are hard enough to

come up with!!! I do know that UCSF and the doctors there are on our

plan. That other doctor on the other post is also on my insurance, so

if I couldn't have gotten a referral to UCSF, I would have gone to

him.

Today I'm in alot of pain. I got Ultram prescribed by the doctor I

saw on Apr. 4th, and it helps, but all week I was doing so well--so

little pain--and then I went shopping Friday (standing & walking) and

then yesterday I worked Bingo for my daughter's band (mostly sitting

but some bending) and today it's raining (again!)so, I'm not doing so

well now!!!! We have had so much rain this spring here in California,

and the same happened last spring. I think the dampness really makes

my back hurt worse. I'll be glad for the heat--although it won't be

so good for my electric bill and Air conditioner!!!

Feel free to write me personally if you want to. I don't mind.

Carol (CA)

I haven't posted in awhile, just been

reading, but wanted to let

> everyone know that I got an appointment to see Dr. Serena Hu on

July

> 17th. I had gone to another orthopedist, and he could see right

away

> that my situation was over his head, so I suggested the docs at

UCSF,

> and suggested Dr. Hu or Berven. His gal got on it right away, and

after

> seeing him on Apr. 4, I had an app't scheduled by Apr. 11th for

July

> 17th. I think that was pretty fast!! I also asked him for a consult

> with a pain management doc, and I have that this Tues. Apr. 25th.

The

> new doc said I need to find out exactly what--and where--the pain

is

> coming from. I now know from getting my medical records from a year

ago

> that I have flatback, degenerative disc disease and arthritis of

the

> spine. I didn't have mylographic contrast done with my CT a year

ago,

> so they can't rule out bulging discs, so maybe someone else may do

a

> Mylogram in the near future? Maybe Dr. Hu? MRI's worry me because I

> couldn't stay still that long in a tube a few inches from my nose.

> They'd have to knock me out or I won't do one.

>

> Carol V. (CA)

>

> Support for scoliosis-surgery veterans with Harrington Rod

Malalignment Syndrome. Not medical advice. Group does not control ads

or endorse any advertised products.

>

July 20, 2006

grrrrrr!!! It must the whole server giving me fits with e-mail and not just my comcast cause it's not here. Sorry I missed that!! Glad he is over it and yeah.. that is just how poor had them too. She was so miserable and ill. Not fun at all. I am very sorry to her you are sick now!! What are you thinking ??? It's SUMMER! You can't be sick! ~ ~ <jules@...> wrote: Yeah I did. He only had like 3 outside his mouth, rest were all inside the mouth, throat and intestional tract. I am sick as a dog now. High fever, diarreah, throwing up. The is day 3 of diarreah, I am weak and doing all I can to keep from getting dehydrated. I didn't

even get to go to Atlanta today as planned. I am so bummed. Back to bed. Someone just shoot me plzz -- Re: update Gee ,

I didn't know he was sick!!!! Did you post saying he was sick and I missed it?!? He got chicken pox ? 'Only 14 days' ?!?!? YIKES Glad he is better. Good heavens!! What do you mean internao pox? had them in her orifices, but this doesn't sound like the same. She was really, really sick with them too. Carol in IL~ ~ <jules@...> wrote: Hi everyone, Just wanted to post a little update on . Hes feeling better !!! Still getting more sores in his mouth and around his lips, but the fever is down, and hes in a much better mood. Only 14 days of him being very sick......... Piece of cake...... Where the heck is my sanity. These "Internal Chicken Pox" are aweful. And extremely painful. I wish, just once, he would get a normal illness......... And man the fibro is in full

swing today. Goodness me, just to get up and go potty is a huge chore today. Shoulda got the plate of that 18 wheeler who ran me over!! Romero Do you ?Next-gen email? Have it all with the all-new Beta. __________________________________________________

July 24, 2006

Hi Rachna,

I am glad that you came here to ask your questions. Please try to understand the mechanics of your husband's esophagus.

Prior to having achalasia, he could have eaten food while standing upside down on his head because the process of peristalsis (the wave-like motion of the esophagus) carried food directly from the top of the esophagus thru the length of the esophagus, to the lower esophageal sphincter (LES) and into the stomach.

I assume you know that there is no longer any peristalsis. Food and liquid get to the stomach "courtesy" of gravity. Obviously, he can no longer eat or drink upside down.

Therefore, since the esophagus is not coated with teflon, it is often necessary to have the food go down with liquid that flows down with gravity. Water is not a bad thing. It is often a necessary or essential thing (and healthy) to help get the food go down with a liquid such as water. You should not let this upset you.

You should be aware that without water, there is a good chance that food can be sitting in his esophagus "waiting" for a liquid to push it thru, and your husband may not even be aware of that.

I mentioned in a previous post that if you envision your husband's esophagus as a funnel and tried putting food into it, a lot of it would sit there. Add water, and it will go down a lot better.

His esophagus will never function normally again. Your job is to see to it that it stays as healthy as possible. Hopefully it will. Eating food without water is assuming that the surgery did more than it could possibly have done.

Without water there is a far greater chance that food will sit in the esophagus, and over time will stretch it further and increase the chances of his having problems in the future. This is a difficult disease to understand, and I would not pretend to know even a fraction of everything.

Coming to this board and posting your questions will give you the benefit of the knowledge and experience of hundreds of people who have been where you and your husband are now. There is much we can all learn from each other.

In a message dated 7/24/2006 2:31:12 P.M. Eastern Daylight Time, rachnachawla@... writes:

Hi All,

My husband had his myotomy 3 months back.

Although he is doing great but sometimes he needs little water with hard and

sticky food to get the food down especially with carrots. Even such foods don't get stuck in

his E but the flow becomes slow. He doesn't need water If he eats slow.

I really get scared whenever he asks water with the food. And I always raise a question why you need water.

Is the food going fine? I think I know the answer but I don't want to accept it. What should I do??

He had his follow-up last month. His doc. didn't do any kind of tests (like barium and endoscopy). Just did the normal checkup.

He said that everything looked fine and asked him to come again after 6 months. We asked him "Can it be happen in the

future?" He said 'No', the chances are very rare. I don't want to look behind. We paid a lot for the last 2 1/2 years.

Thanks,

Rachna

July 24, 2006

Rachna,

There is a lot of (peaceful) discussions, (i.e. controversy) on this website as to how one should keep their E healthy post myotomy. What works for one person may not work for another. There are disputes as to how often one should have a checkup. There are disputes as to what the best kind of drink accompanying a meal should be. Some say soda, others say water.

Your question is an excellent one, as to how to keep the E healthy. I can present to you my opinion, and I can also balance it by submitting to you the opinions of others who respectfully disagree.

I will tell you, that I believe there are two major aspects of this....how you handle your day to day living, and secondly the diagnostic aspect of how often you see your physician regarding your condition and what tests they will perform.

Please don't consider this a cop out, for its not, but I could type for an hour and not necessarily do more than scratch the surface of these most important issues. You must take the time and read the posts that have preceded this and see what fits your situation best.

Some prefer drinking water, while others must have soda. Some sleep sitting up, while others regurgitate the contents of their esophagus before going to sleep (and sleep lower down). Some use nifedipine to relax the LES before eating, while others cannot tolerate the sudden drop in blood pressure. Some see their doctors annually, or bi-annually, while others wait for symptoms before going. I would like to say that you should err on the side of caution. You must read the posts. Unfortunately for us, as achalasia sufferers, we as patients, have doctors who recommend a different course of action than other doctors do. Who is right? Is there such a thing as being right for everyone, or must you take each case individually?

I can't tell you what to do. Please, just read what has been written, and don't be afraid to keep on asking questions.

In a message dated 7/24/2006 4:29:15 P.M. Eastern Daylight Time, rachnachawla@... writes:

Thanks for the great info.

I got your point. What should we do to keep his E healthy?

Rachnacynmark24@... wrote: