Hi im new

July 13, 2006

Hi Brittney and welcome to the group. I'm 60 years older than you are but

I'll try to help any way I can.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=Retrieve & dopt=Ab

stract & list_uids=12192251 & query_hl=2 & itool=pubmed_docsum

The link above tells a little about prospects for JRA even though it's

brief.

http://www.arc.org.uk/about_arth/booklets/6033/6033.htm

The link above is to an English booklet about RA that I find easy to read

and with good information.

You need to be treated by a board-certified rheumatologist who will help you

with the best medications for you. With your Legg-Calve perthes disease in

addition to RA there may be some restrictions in what medications would be

best for you.

I'm not aware of anything in the way of home treatments instead of a

generally good diet and whatever exercise is compatible with your diseases.

I hope you are able to get relief. God bless.

-----Original Message-----

From: Rheumatoid Arthritis

[mailto:Rheumatoid Arthritis ] On Behalf Of babiebluepoodle

Sent: Monday, July 03, 2006 11:06 AM

Rheumatoid Arthritis

Subject: hi im new

hi my name is brittney i am 18 years old i have a condition called leg-

calve perthes disease and i have it in both of my hips, i just found

out that i have rheumatoid arthritis in both of my hips and i dont

know much about this arthritis so maybe you can help me figure out

what treatments are possible. i was born with this disease and i have

had 1 surgery for it and they want to do total hip replacements on

both of my hip by the age of 35 and i am kinda scared.i want to know

if there are any home treatments i can do to relieve the stiffness ad

pain. thank you!

July 13, 2006

Brittany, I am sorry you are suffering at such a young age. Hip pain is the pits. Be sure to talk to your doctor about things like actonel or fosamax, taking calcium supplements with vitamin D, using a biologic medication such as remicade to stop the progression of the RA. Possibly taking glucosamine/chondritiin blends that might help too. Be sure to add a 2 " foam topper to your mattress to cushion your hip joints and make sure to sleep with a small pillow between your legs to keep pressure off your hips. We are all here for you. Hugs, Deborah

On 7/3/06, babiebluepoodle <babiebluepoodle@...> wrote:

hi my name is brittney i am 18 years old i have a condition called leg-calve perthes disease and i have it in both of my hips, i just found out that i have rheumatoid arthritis in both of my hips and i dont

know much about this arthritis so maybe you can help me figure out what treatments are possible. i was born with this disease and i have had 1 surgery for it and they want to do total hip replacements on both of my hip by the age of 35 and i am kinda scared.i want to know if there are any home treatments i can do to relieve the stiffness ad pain. thank you!

July 14, 2006

Hi there my name is janis i have had R.A now for 3 years. i have been

trying to post a note on here but they dont put it on... lets see if

this one makes it.

July 30, 2006

>

> Hi there my name is janis i have had R.A now for 3 years. i have

been

> trying to post a note on here but they dont put it on... lets see if

> this one makes it.

>

Hi, Janis. I'm new too and I am 31 years old with severe RA.

July 5, 2009

---

Thanks for the welcome. We are in Herts in UK, just outside of London. We are

under a hemotoligist at the hospital but dont think his a CML specialist

although I know he has some other CML patients. He takes it after breakfast and

drinks loads. Dont feel sick very often but the tireness is a real pain.

We are so glad that we are living in a time when its easier to treat, but I know

Darren is upset knowing drugs for life but I think its still early days.

In , ROBERTA DOYLE <rcd1929@...> wrote:

>

> Hi , welcome, as they say, to the club no one wants to belong to!!

> If you do not have a CML expert, I would suggest that you get one. You didn't

say where you live, but there are many great doctors available that specialize

in CML. Some times it takes a while to adapt to Gleevec, it took me 2 months

before I even felt half way human. Gleevec should be taken with a substantial

meal, or it may cause nausea. Also it is not good to lie down directly after

taking it, that too can cause nausea. And have Darren dring lots of water. I am

no longer on this drug, I am one of the less fortunate in that it did not work

for me, therefore have been on several drugs since.

> This is really a great time to have CML, there are so many new options that

were not available to us old timers. I have had it for 14 years, when the life

expectancy was about 5 years. Today there is no limit to how long you can live,

and live a good productive life. Darren may take some time to adjust to

Gleevec, and being fatigued is part of life.

> Let us know where you are from, I'm sure someone will know who would be the

best doctor for your husband in your area, and good luck. Bobby

>

> a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's

Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

> 02/13/09 - XL trial ended due to side effects

> 04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

>

> From: lisadutton1981 <minx101@...>

> Subject: [ ] Hi Im new

>

> Date: Sunday, July 5, 2009, 5:56 AM

>

> Found a link to this site on Macmillian board. My name is Im 27. Im

married to Darren who is 32 and we have 2 lovely little girls. Darren was dx

with CML just over 3 months ago after a blood test for a wheat alergy. He

appears to be responsing to Gilevec but havent had second lot of BCR results

yet, so not 100% sure just yet.

>

> His doing well and is back to work but finds himself getting very tired and

often has to go back to bed during the day. He also has weird numb type pains in

his side a ribs. His liver hasnt taken to the drugs too well and also waiting to

see how much damage was done to the spleen because it was so big it was pushing

on stomach and bowels before dx. He has also dropped 8lb in the last few weeks,

so of course we are worried.

>

> His consultant is a bit off sometimes and we arent sure wheather to continue

with him or request to be under a CML specialist.

>

> Anyway that our story so far. Hope your well and hoping to chat to you all

soon.

>

July 5, 2009

Hi

I guess I live not too far from you as I am in HA8. I was dx with CML

4+ years ago and am post-BMT.

Where are you being treated? I am a patient at the Royal Free

Hospital in Hampstead and recommend them.

CML and the treatment are difficult; but not impossible. I, too, was

very tired when I was on glivec. It is very normal to feel tired but

sometimes not so easy to cope with.

Please email directly if I can help.

slleigh@....

regards

SUSAN LEIGH

On 5 Jul 2009, at 16:27, lisadutton1981 wrote:

>

> ---

> Thanks for the welcome. We are in Herts in UK, just outside of

> London. We are under a hemotoligist at the hospital but dont think

> his a CML specialist although I know he has some other CML

> patients. He takes it after breakfast and drinks loads. Dont feel

> sick very often but the tireness is a real pain.

> We are so glad that we are living in a time when its easier to

> treat, but I know Darren is upset knowing drugs for life but I

> think its still early days.

>

> In , ROBERTA DOYLE <rcd1929@...> wrote:

> >

> > Hi , welcome, as they say, to the club no one wants to belong

> to!!

> > If you do not have a CML expert, I would suggest that you get

> one. You didn't say where you live, but there are many great

> doctors available that specialize in CML. Some times it takes a

> while to adapt to Gleevec, it took me 2 months before I even felt

> half way human. Gleevec should be taken with a substantial meal,

> or it may cause nausea. Also it is not good to lie down directly

> after taking it, that too can cause nausea. And have Darren dring

> lots of water. I am no longer on this drug, I am one of the less

> fortunate in that it did not work for me, therefore have been on

> several drugs since.

> > This is really a great time to have CML, there are so many new

> options that were not available to us old timers. I have had it

> for 14 years, when the life expectancy was about 5 years. Today

> there is no limit to how long you can live, and live a good

> productive life. Darren may take some time to adjust to Gleevec,

> and being fatigued is part of life.

> > Let us know where you are from, I'm sure someone will know who

> would be the best doctor for your husband in your area, and good

> luck. Bobby

> >

> > a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 -

> Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 -

> Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in

> 10 months #840 - Zavie's Zero Club 09/2006 - out of CCR

> 04/29/08 - XL228 Trial/ U.of Michigan 06/02/08 - CCR ( in 4 weeks)

> > 02/13/09 - XL trial ended due to side effects

> > 04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

> >

> > From: lisadutton1981 <minx101@...>

> > Subject: [ ] Hi Im new

> >

> > Date: Sunday, July 5, 2009, 5:56 AM

> >

> > Found a link to this site on Macmillian board. My name is Im

> 27. Im married to Darren who is 32 and we have 2 lovely little

> girls. Darren was dx with CML just over 3 months ago after a blood

> test for a wheat alergy. He appears to be responsing to Gilevec but

> havent had second lot of BCR results yet, so not 100% sure just yet.

> >

> > His doing well and is back to work but finds himself getting very

> tired and often has to go back to bed during the day. He also has

> weird numb type pains in his side a ribs. His liver hasnt taken to

> the drugs too well and also waiting to see how much damage was done

> to the spleen because it was so big it was pushing on stomach and

> bowels before dx. He has also dropped 8lb in the last few weeks, so

> of course we are worried.

> >

> > His consultant is a bit off sometimes and we arent sure wheather

> to continue with him or request to be under a CML specialist.

> >

> > Anyway that our story so far. Hope your well and hoping to chat

> to you all soon.

> >

July 5, 2009

Hi ,

Welcome to the club that nobody really wants to be a member of.

I've been in the CML business since August 1999.

The best advice I have for you (and everyone else) is to get to a top CML

specialist in your area. If there isn't one close by then drive, fly, to get

to one. Once you have been seen by a specialist, then find a local

hematologist who will work with the specialist.

Since you are close to London, here a 3 specialists that I would reccomend.

1. Dr. Goldman <mailto:j.goldman@...>

j.goldman@...

2. Dr. Jane Apperley +44 (0)20 8383 3237 j.apperley@...

3. Dr. Marin, M.D. 020 8383 1627 d.marin@...

Also, you might want to join the UK list at

http://www.cmlsupport.org.uk/Templates/HomePageTemplate.aspx?navigation=37

Best regards to Darren,

Zavie

Zavie (age 70)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

lisadutton1981

Sent: July-05-09 5:57 AM

Subject: [ ] Hi Im new

Found a link to this site on Macmillian board. My name is Im 27. Im

married to Darren who is 32 and we have 2 lovely little girls. Darren was dx

with CML just over 3 months ago after a blood test for a wheat alergy. He

appears to be responsing to Gilevec but havent had second lot of BCR results

yet, so not 100% sure just yet.

His doing well and is back to work but finds himself getting very tired and

often has to go back to bed during the day. He also has weird numb type

pains in his side a ribs. His liver hasnt taken to the drugs too well and

also waiting to see how much damage was done to the spleen because it was so

big it was pushing on stomach and bowels before dx. He has also dropped 8lb

in the last few weeks, so of course we are worried.

His consultant is a bit off sometimes and we arent sure wheather to continue

with him or request to be under a CML specialist.

Anyway that our story so far. Hope your well and hoping to chat to you all

soon.

July 6, 2009

, what do you take now?

I just started Sprycel after nearly five years on Gleevec. I still sleep all the

time!

in San Francisco

From: slleigh@...

Date: Sun, 5 Jul 2009 16:47:33 +0100

Subject: Re: [ ] Hi Im new