I need advice!!!

[Guest guest]

Michi,

Unfortunately, I don't have any sage advice to give, since I'm also

not happy with my regular 5-year old mattress (and I haven't yet had

revision surgery and have no free disks below my fusion....). But I

definitely think you are doing the right thing to see your doc and

have new x-rays taken. Better to know than to be in pain and

worried. When's the last time you saw him? Good luck!!!!!!!!!!!

loriann

P.S. I'm SO glad you reposted that you hadn't had any replies, and

hope that everyone else who feels ignored will do the same. Maybe

people just got busy with the holidays or the summer or whatever.

Sure hope you get some helpful/supportive replies now.

> Hi Feistys!!! I havent posted for a while, I had a question, I had

> revision surgery almost two years ago, and about 5 months ago I

have

> been having lots of pain, specially on my lower back, I cant sleep

on

> my back at all anymore and sleeping on my side is horrible so you

can

> imagine how my nights are, I am thinking of buying a new mattress

to

> see if it will help, I saw the 12 inch memory foam mattress versus

the

> regular spring one, what do you guys recommend I get? I am making

an

> apointment cause the pain I think is not normal, but at the same

time I

> rather not here any bad news so I have been postponing it, but I

guess

> i will have no choice soon. I am making an apoint for this month,

I

> think.... to see what is going on, do you think this is normal? I

> know he left unfused a couple of discs down there, maybe they went

> bad, who knows!! has anyone been through this and what do you

> recommend?

>

> Any advice will be greatly appreciated!!!

>

> Hugs

> MICHI

[Guest guest]

I don't know if it will help or not, but I do have a memory foam

mattress. It is not Tempur-pedic, but similar quality - a bit firmer.

It has helped tremendously and while I am worse lately, I sleep better

on it than when I am away from home.

Definitely, it seems wise to see a doc!

kam

[Guest guest]

Thank you Kam, I think I am going to end up buying it!!! thanks so much!!!advokam <advokam@...> wrote:

I don't know if it will help or not, but I do have a memory foam mattress. It is not Tempur-pedic, but similar quality - a bit firmer. It has helped tremendously and while I am worse lately, I sleep better on it than when I am away from home.Definitely, it seems wise to see a doc!kamSupport for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products.

for Mobile Take with you! Check email on your mobile phone.

[Guest guest]

Michi,

I'd suggest talking to your doctor about this.

I had lower back pain after my 2nd surgery. Talking to my ortho, it

turned out that my back muscles were strong but had no endurance.

Once I got through a round of PT (with the exercises different from

those I was doing after surgery), there was no more pain.

One other thing. Different people need different types of back

support in their bed. Many of you, if I remember right, like soft

mattresses. On the other hand, I need a firm mattress. A pillow top

just hurts, perhaps because my rear wants to sink down lower than my

fusion will let it. (Drives my wife crazy...she really likes the

softer mattresses.)

[Guest guest]

I know what you mean, I love pillow tops, I cant wait to figure it out cause I am really hurting and I love to sleep, thats one thing i love and I cant do it anymore and it feels just like before the surgery, well no to extreme, before I had to wake up my hubbe in the middle of the night so that he could turn me over, now I can still do it on my own but its getting worst. I guess I will go again to my apoint and see what happens, I havent seen my doc since oct of last year, so I hope everything is in place and all is ok!!! send me good thoughts!!! thanks so much for answering!!

HUGS

MICHI Blackledge <scottb2@...> wrote:

Michi,I'd suggest talking to your doctor about this.I had lower back pain after my 2nd surgery. Talking to my ortho, it turned out that my back muscles were strong but had no endurance. Once I got through a round of PT (with the exercises different from those I was doing after surgery), there was no more pain.One other thing. Different people need different types of back support in their bed. Many of you, if I remember right, like soft mattresses. On the other hand, I need a firm mattress. A pillow top just hurts, perhaps because my rear wants to sink down lower than my fusion will let it. (Drives my wife crazy...she really likes the softer mattresses.)Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not

medical advice. Group does not control ads or endorse any advertised products.

Sell on Auctions - No fees. Bid on great items.

[Guest guest]

Michi,

Sorry I didn't post earlier. I am tooo early in my recovery from

revision surgery to be able to answer your pain question. I do have

a matress suggestion/opinion.

Last year we re-did our master bedroom and knew we were going to buy

a new bed. We were seriously considering the Temperpedic because of

my back but were reluctant to invest without knowing if it was going

to be comfortable...they don't give them away!

As luck would have it, my husband and I were on a weekend trip to

Newport and the hotel we were staying at happened to have an

arrangement with Temperpedic and every bed in the hotel was one of

theirs. We got to sleep in it and really see what it did for comfort

and support. I was sold and so was my husband. I love it because it

is firm in the way we seem to need to have support around the hips

and low back...but it has enough give so that it doesn't press back

giving sore hips and shoulders. Pete likes the bed for similar

reasons but also likes the feature that you can't feel the other

person moving around.

Perhaps you could find a similar way to do a " test-drive " in your

area? We ended up buying the 8 " mattress which the salesperson said

was just as effective as the more expensive 10 " model.

Hope this was helpful. Whenever the subject of mattresses comes up I

am never really sure that the posts are useful since comfort while

sleeping seems like it is very unique for each person. I looked in

this sites files section where I remembered there is a spot for

logging in mattress preferences (and only three folks have done

so)..but one person suggested foam wedges...perhaps those would help

you as well?

Good luck, Cam

[Guest guest]

Hi MIchi,

I haven't had revision (yet, still waiting for consult) but judging from past posts about mattresses, a firm foundation with a soft-top mattress seems to be the favoured opinion (in my opinion). I do have a memory foam topper with pillow that I find comfortable, though with the medications I do end up sleeping in the recliner since the meds tend to cause acid reflux when sleeping flat. If we change beds again, I would go for an adjustable bed with the memory foam mattress. Personally, I loved my California waterbed but my husband didn't, so we had to compromise.

As for not responding sooner, I was busy since I also have to caregive/advocate for my elderly mother and cerebral palsy brother, who live independently but still need help with their lives. I hope you do find answers to your situation. It is better being informed than not knowing what you are dealing with. You don't need that added stress and you can make some sort of plan of action for your life.

Llweyn

-----Original Message-----From: [mailto: ]On Behalf Of loriann262000Sent: July 8, 2005 7:58 AM Subject: Re: I need advice!!!Michi,Unfortunately, I don't have any sage advice to give, since I'm also not happy with my regular 5-year old mattress (and I haven't yet had revision surgery and have no free disks below my fusion....). But I definitely think you are doing the right thing to see your doc and have new x-rays taken. Better to know than to be in pain and worried. When's the last time you saw him? Good luck!!!!!!!!!!!loriannP.S. I'm SO glad you reposted that you hadn't had any replies, and hope that everyone else who feels ignored will do the same. Maybe people just got busy with the holidays or the summer or whatever. Sure hope you get some helpful/supportive replies now.> Hi Feistys!!! I havent posted for a while, I had a question, I had > revision surgery almost two years ago, and about 5 months ago I have > been having lots of pain, specially on my lower back, I cant sleep on > my back at all anymore and sleeping on my side is horrible so you can > imagine how my nights are, I am thinking of buying a new mattress to > see if it will help, I saw the 12 inch memory foam mattress versus the > regular spring one, what do you guys recommend I get? I am making an > apointment cause the pain I think is not normal, but at the same time I > rather not here any bad news so I have been postponing it, but I guess > i will have no choice soon. I am making an apoint for this month, I > think.... to see what is going on, do you think this is normal? I > know he left unfused a couple of discs down there, maybe they went > bad, who knows!! has anyone been through this and what do you > recommend?> > Any advice will be greatly appreciated!!!> > Hugs> MICHISupport for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products.

[Guest guest]

Dear Michi,

Not to be a downer, but following my first revision, I had pain while sleeping and seated, and when I went in to have my six month check-up I found out that my fusion above my revision ( from the 1973 harrington rod surgery) had cracked. I was fine and pain free while walking and standing, only had pain while sleeping, turning over, and when I was seated for a long time. I would suggest you get yourself checked by your doc, in my case it sure wasn't my mattress. I 'm holding a good thought for you, hope you are absolutely fine, but pain following revision should always be checked out by your doc, just my two cents.

Colorado Springs

RE: Re: I need advice!!!

Hi MIchi,

I haven't had revision (yet, still waiting for consult) but judging from past posts about mattresses, a firm foundation with a soft-top mattress seems to be the favoured opinion (in my opinion). I do have a memory foam topper with pillow that I find comfortable, though with the medications I do end up sleeping in the recliner since the meds tend to cause acid reflux when sleeping flat. If we change beds again, I would go for an adjustable bed with the memory foam mattress. Personally, I loved my California waterbed but my husband didn't, so we had to compromise.

As for not responding sooner, I was busy since I also have to caregive/advocate for my elderly mother and cerebral palsy brother, who live independently but still need help with their lives. I hope you do find answers to your situation. It is better being informed than not knowing what you are dealing with. You don't need that added stress and you can make some sort of plan of action for your life.

Llweyn

-----Original Message-----From: [mailto: ]On Behalf Of loriann262000Sent: July 8, 2005 7:58 AM Subject: Re: I need advice!!!Michi,Unfortunately, I don't have any sage advice to give, since I'm also not happy with my regular 5-year old mattress (and I haven't yet had revision surgery and have no free disks below my fusion....). But I definitely think you are doing the right thing to see your doc and have new x-rays taken. Better to know than to be in pain and worried. When's the last time you saw him? Good luck!!!!!!!!!!!loriannP.S. I'm SO glad you reposted that you hadn't had any replies, and hope that everyone else who feels ignored will do the same. Maybe people just got busy with the holidays or the summer or whatever. Sure hope you get some helpful/supportive replies now.> Hi Feistys!!! I havent posted for a while, I had a question, I had > revision surgery almost two years ago, and about 5 months ago I have > been having lots of pain, specially on my lower back, I cant sleep on > my back at all anymore and sleeping on my side is horrible so you can > imagine how my nights are, I am thinking of buying a new mattress to > see if it will help, I saw the 12 inch memory foam mattress versus the > regular spring one, what do you guys recommend I get? I am making an > apointment cause the pain I think is not normal, but at the same time I > rather not here any bad news so I have been postponing it, but I guess > i will have no choice soon. I am making an apoint for this month, I > think.... to see what is going on, do you think this is normal? I > know he left unfused a couple of discs down there, maybe they went > bad, who knows!! has anyone been through this and what do you > recommend?> > Any advice will be greatly appreciated!!!> > Hugs> MICHISupport for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products. Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products.

[Guest guest]

I'm one of those that gets on best with a soft mattress. These days I

just can't risk sleeping on a hard mattress - the last time I did that

was in March, on holiday in Spain. The appartment had one of those

loathsome so-called orthopaedic mattresses. By the time we arrived I

was so dog tired I just popped a tramadol (ultram?) and was straight

off to sleep, but when I woke up about 4 hours later I was in agony -

something about the last fusion means that I lie on the points of my

hips and they get terribly swollen and painful. I could hardly walk

for the next couple of days and ended up raiding the appartment for

every spare pillow there was, to put in under my sheet for extra

padding.

That said, I do almost as badly on a soft mattress on a soft sprung

base - it really has to be a solid base or I just don't cope with it

because, similarly to , I have this feeling that my rear is

trying to sink deeper than it actually can or should, and get almighty

lower back pain.

A word on depth, probably this depends somewhat on your size/weight,

especially with softer mattresses. I'm a big person and overweight,

so I need a nice deep mattress to support me, but sheer size

definitely plays a part - back about 10 years ago, I was incredibly

skinny and only weighed about 145lbs. My waist was 14 inches smaller

than my bust or hips. At the time I had a Dunlopillo Star foam

mattress that was about 6 inches deep, supposedly deep enough unless

you were on the plus side of 14 stone, but simply because of my

proportions it wasn't deep enough.

--

Something unknown is doing we don't know what

[Guest guest]

titch,

You reminded me of my biggest fear now...travelling and not being

able to know what rotten mattress I might have to endure. Which also

reminds me of another tip...

Every summer we go houseboating...mattresses very questionable and

thin..but I found that if I take my blow up mattress I can adjust

the firmness to my needs and just place it atop the bed and I am all

set.

I think I read on some site of a woman actually used a blow up

camping mattress in leiu of a regular mattress on her bed because

she found this most comfortable and far less expensive than a foam

mattress....I bought my king sized fleece topped at K-Mart

for under $30.00...so it is not a hugh investment to try.

Good sleeping, Cam

[Guest guest]

Michi,

I purchased a memory foam matress topper last year for my bed (now 5 yrs post-revision for Flatback). It gave me such incredible relief that when I'm not having one of my "bad pain nights", I can actually SLEEP for 5-6 hours without having to get up every 20-30 minutes to walk around and/or re-position.

The memory foam matress topper was such a hit in my family that we now have them on ALL of our beds!

Best to all,

Beth B.

-------------- Original message -------------- > Hi Feistys!!! I havent posted for a while, I had a question, I had > revision surgery almost two years ago, and about 5 months ago I have > been having lots of pain, specially on my lower back, I cant sleep on > my back at all anymore and sleeping on my side is horrible so you can > imagine how my nights are, I am thinking of buying a new mattress to > see if it will help, I saw the 12 inch memory foam mattress versus the > regular spring one, what do you guys recommend I get? I am making an > apointment cause the pain I think is not normal, but at the same time I > rather not here any bad news so I have been postponing it, but I guess > i will have no choice soon. I am making an apoint for this month, I > think.... to see what is going on, do you think this is normal? I > know he left unfused a couple of discs down there, maybe they went > bad, who knows!! has anyone been through this and what do you > recommend? > > Any advice will be greatly appreciated!!! > > Hugs > MICHI > > > > > > > Support for scoliosis-surgery veterans with Harrington Rod Malalignment > Syndrome. Not medical advice. Group does not control ads or endorse any > advertised products. >

[Guest guest]

Hi I have not posted in a long time, but I had to tell you I spent 5 thousand dollars on the temper pedic memory foam mattress and after 1 night I will never sleep on it again. I thought it would take all the pressure off my left rib cage and lower back, it made it worse you would think that it would be soft because it is foam but it is not. I cant take it back because I bought the adjustable one because I thought if nothing else I could sit up. so now I am stuck with a bed I can not use so I am back to sleeping sitting up on the couch. I miss my water bed.marcy johnson I need advice!!!Hi Feistys!!! I havent posted for a while, I had a question, I had revision surgery almost two years ago, and about 5 months ago I have been having lots of pain, specially on my lower back, I cant sleep on my back at all anymore and sleeping on my side is horrible so you can imagine how my nights are, I am thinking of buying a new mattress to see if it will help, I saw the 12 inch memory foam mattress versus the regular spring one, what do you guys recommend I get? I am making an apointment cause the pain I think is not normal, but at the same time I rather not here any bad news so I have been postponing it, but I guess i will have no choice soon. I am making an apoint for this month, I think.... to see what is going on, do you think this is normal? I know he left unfused a couple of discs down there, maybe they went bad, who knows!! has anyone been through this and what do you recommend?Any advice will be greatly appreciated!!!HugsMICHISupport for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products.

[Guest guest]

Dear Marcy, I am so sorry you spent $5,000 on a bed you cannot use, to

me that is alot of money & I would be sick if I spent that much money on

a bed I can't use. I bought a Serta Pillo Top mattress and boxspring it

was a yr ago this past Dec. That cost me almost $1,000 & I sleep on it

most of the time, but I also have my rocker recliner next to my bed &

there are nights I have to sleep in it.

I believe Michi said she bought a number 8, maybe the number 12 is alot

harder, you said yours was adjustable what does that mean?

I am still recovering from my Revision, it was a month ago the 8th of

this month.

I hope you find what is causing your pain.

Diane B

[Guest guest]

Dear Matress-Seekers,

I'm glad we didn't invest in the TempurPedic matress system and went with the matress topper only. The matresses we have o our bed were quite expensive to begin with and the topper made them feel just a wee bit more cozy. And the topper only costs about $100-$150 deoending on what size you order.

All the best,

Beth

--------- I need advice!!!

Hi Feistys!!! I havent posted for a while, I had a question, I had revision surgery almost two years ago, and about 5 months ago I have been having lots of pain, specially on my lower back, I cant sleep on my back at all anymore and sleeping on my side is horrible so you can imagine how my nights are, I am thinking of buying a new mattress to see if it will help, I saw the 12 inch memory foam mattress versus the regular spring one, what do you guys recommend I get? I am making an apointment cause the pain I think is not normal, but at the same time I rather not here any bad news so I have been postponing it, but I guess i will have no choice soon. I am making an apoint for this month, I think.... to see what is going on, do you think this is normal? I know he left unfused a couple of discs down there, maybe they went bad, who knows!! has anyone been through this and what do you recommend?Any advice will be greatly appreciated!!!HugsMICHISupport for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products.

[Guest guest]

I'd be getting a lawyer, as your builder made a grave error. It is his

fault. It is up to him to fix his error.Any costs involved would be his

responsibility. If trying to get him to right his error doesn't work, you

will need a lawyer.

We had to get a variance for our addition to our house, but it was a

different story, and was approved.

and Rob 17 Spondy

On Fri, 16 Feb 2007 17:37:42 -0000 " lincmom9 " <chrislinc@...> writes:

Hello!

I was wondering if anyone out there has any experience with my dilema...

My husband and I are building a house in Culpeper, VA and the builder

has put the house 1.7 feet within the setback zone (according to county

code, houses must be 125' from the street). In addition to our house,

the front porch is another 10ft too close... in total almost 12'. We

went in front of the Variance Board last night and they denied us!!!!!

OMG!!!! What do we do? They suggested resubmitting a variance request

for just the 1.7 feet.. but we need the front porch... we were planning

to put a handicap ramp on it for Sam. It's so much easier for him to

walk up and down and on those bad days, I can push him in his

stroller.. eventually he will get to big for me to carry. I'm sick to

my stomach about it all.

This forum reaches so many, I thought I would throw this out there in

hopes that someone has gone through something similar and can offer

some advice... my builder just keeps passing the buck (so-to-speak).

--

(mom to Sam, age 5, systemic JRA)

[Guest guest]

,

This can be interesting. You and Hubby and Contractor agreed with the

Construction. Did you look at the Blueprints? This would show footage from

East to one point to East to another point and South to a Point and North to

another Point. Laying the Foundation should have been set to the degree of ALL

limits. Since I assume this Contractor does business in that area HE should

have known the Limits. It's his Fault. But if after the Agreements were made

and you changed it then it would be another story.

On the agreed signing was the porch listed as being set by a footage?

Like the house was 40 ft by 50 ft as the structured 4 walls, with the porch

let's say setting at 10 ft by 20 foot with a ramp length of 12 ft off the

porch? In all contracts you should have a Attorney look it over.

Heres something else to look into. Since the Contractors HAS to get a

Permit to build. He should have gotten a approved permit for what was to be

built there. Set by footage from one point to the other. If he did and it was

approved. Now it is not approved I still think it is the Builders fault due to

he didn't het the Foundation poured in the right spot. Let me know how it was

done. As a Inspector has to come out after each process to inspect and ok

it. This includes Walls, Flooring, Wiring, Plumbing, Installation, and so on.

Each process is suppose to be inspected. Go to the County and see if all was

inspected. Now the Foundation is to be inspected as well. If it was and was

approved its the Inspectors fault. I do know Inspectors can be paid to let

things slip by. They are paid extra money by the Contractors to approve certain

things just to get it built. It is not right but somethings can be covered up

by a wall or something.

My Sister had her house built in 2000. Spending her hard earned money

for a well built house. After work each day she would go by there and take

pictures and walk through the house. Checking for any crooked 2 x 4's or

anything

that didn't look right. She would call me and ask me about something and

then I went out to check it myself. As this would be 2 peoples views on it. She

raised some cane about a few things and even had the Contractor put in

several cracked and crooked boards. See if we had not done this a 2 x 4 would

get

covered up by the sheet rock and later it could cause big problems. Her house

was finally finished by 2001.

What I would also think about. Is talking with neighbors as this does

stand up in those meetings. The porch can be built if the Neighbors agree with

it. I would also check out their measurements and see what their house is

set at. Things are set to bend. With your child it would be nuts not to have a

porch and a ramp as it helps him be more mobile and independent I would talk

with the Neighbors and as if they would sign a Petition to have this porch

and ramp built.

I have lived in a few places where the frontage from the road was 40

feet from the road. I have also lived where the frontage was 10 foot from the

road. So it is interesting with the 125 ft from the road. Seems the right

of way would be questionable. See what the right of way is. Here the right of

way can not be more than 10 ft from the road. As the City can come in later

and buy that 10 ft spot and put a side walk in. Plus utilities have the right

of way to their lines.

Look at the Deed for this info. See if theres a clause for a right of

way. I am not sure if you know this but each Utility should have a blueprint

to their lines. City or County should have a Right of way map. Go to the

County and get a Copy of the Plat as this can show somethings. You should have

a

Copy of this put in a safe place.

Did you go to a Attorney to get the Deal between the Contractor and you

on building the House? If not go and look over the Contract and see if theres

any clauses in there. The Builder as I said should have filed for building

permits and each phase of construction should have been inspected. Someone

along this line had to approve it and it comes down to the Foundation being

poured. Since this is the first thing in Concrete. If you need more info please

feel free to email me at _Robbin40@..._ (mailto:Robbin40@...) .

Robbin

[Guest guest]

Hey ya'll-

I don't post a lot anymore but I read the threads coming through all the

time.

I wanted to see if anyone had any opinions on some things happening with me.

I guess if anyone can relate to these issues it will be comforting but

don't just tell me you experience them to reassure me(lol). I really want to

know.

Okay, just to back up. I am on Spyrcel 50mg (2 pills daily at bedtime). I

was on Gleevec 800mg but due to intense side effects the drs switched me.

First, I talked about this before, the rash, blotchy red inflamed area that are

occurring on my face. Some might remember the dr thought maybe it could be

shingles, an allergic reaction, who knows. Well, it started really bad again

yesterday, the oncologist got me into a dermalogist who decided to due to

skin biopsy of them to find exactly what is going on. She took a small piece

off my face on the right hairline area, 2 stitches......She thought it could

be an allergy to something in or on my skin, could be allergic to the chemo or

possibly the leukemia coming though my face. This all sounds weird to be

and frightening! First, I have been on the Sprycel since 9/07. Wouldn't I

have shown an allergy since then? And can leukemia come through the skin

(oooey). The area is bright red, burns, itches, very swollen and blotchy from

right under my right eye to the side of my outer cheek. She put me on

prednisone

until the biopsy results come back, then she is doing some allergy testing

where they put stickers on my back on Monday, remove them on Wednesday and

results on Friday. (not the needles in the back) this actually tests skin

allergies not seasonal/environmental allergies).

Anyone ever experienced or heard anything about this skin issues?

Secondly, I feel like I carry a gut full of fluid. I am always short of

breath and when I switched from Gleevec to Sprycel, I was off everything for 3

weeks during the transition. I lost 18 pounds when I stopped the Gleevec.

After starting the Sprycel, I have put all that plus probably another 5-10

pounds on. I am not someone who worries about weight per say but I always feel

full and look it in the belly area. Chest X-rays have always been negative so

I know its not in my chest. Should I be concerned with this or is this what

there are talking about with side effect of just " fluid retention " I do get

the peri-orbital edema all the time.

My PCR results on both Gleevec and Spyrcel have always been pretty good. My

body does well with the drugs as far as keeping the CML in check, which I am

grateful for, but the side effects have been not so wonderful. My PCR's for

the last 6-8 months have all shown PCRU. (Thank Gosh).

I am a little freaked out about the possibly of being allergic to Spyrcel.

I feel like I am always waiting for the next shoe to drop.......

Sorry this is so long. I due apologize. I had a rough CML day as I call

them and today I just needed to vent and question alittle. This has always

been a great place for me to do that. Thanks again and thanks for any advice

to

come especially from my senior CMLers out there! Bless you for your

guidance and support!!!

I should just lastly say that I am my local oncologist's only patient on

Syprcel, he has 3 on Gleevec so he is very honest that he is out of his league

with syprcel. I am flying to Portland in 2 weeks to see my CML specialist,

the great Dr. Mauro at OSHU who I know will have all my answers.

Hugs & Hope

36

Wife and mom to 3 (13,10, 8)

CML 5/13/05

Gleevec 800mg until 8/07

Sprycel 100mg since 9/07

**************You're invited to Hollywood's biggest party: Get s

updates, red carpet pics and more at Moviefone.

(http://movies.aol.com/oscars-academy-awards?ncid=emlcntusmovi00000001)

[Guest guest]

Hi ,

A couple of things I can share with you. When I was on Gleevec, I had

a rash and a dermatologist did the same kind of skin biopsy on

me....3 areas punched out and stitched. From the biopsy they can tell

if it is a typical allergic type reaction.....but not necessarily

what you are allergic to. So then they would do the skin patches to

test for allergies. Maybe this is not from Sprycel.

About all the fluid that you retain....seeing as how they have ruled

out lung fluid, then it could just be fluid from lymphatic drainage

collecting in your abdomen. Having a very full stomach area would

make it harder to take a deep breath. You could try some lymphatic

massage, which is to help promote drainage. There are massage

technicians and physical therapists who specialize in this technique.

If you got the fluid down, then you might wear some kind of

compressive support to that area, just like someone wears compression

stockings...or even wrap the area with a wide ace bandage. I am sure

if someone was working with you, they would have some suggestions.

You can even learn some of the lymphatic drainage techniques to do at

home.

I am also heading to Portland soon for my follow-up with Dr. Druker

on March 12th. Those folks might have some answers or suggestions for

you.

an oldtimer, C.