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Myelofibrosis

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Quo Vadis
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Subject: myelofibrosis
Date: 05/04/2007

I've been diagnozed with myelofibrosis 14 (fourteen) years ago! At the time my life expectancy was 3-5 years, top. Well, it seems I outlived some of my doctors...

Lately my spleen has reached a ridiculous size and my liver has been affected too. I may have have to do splenectomy. I'd be grateful to have reactions mainly by bloggers who've had their spleen removed. I need to know what to expect and for how long. Thanks!

Caregiver
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Deannamarie
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Subject: RE: myelofibrosis
Date: 05/07/2007

 

On 5/4/2007 Quo Vadis wrote:

I've been diagnozed with myelofibrosis 14 (fourteen) years ago! At the time my life expectancy was 3-5 years, top. Well, it seems I outlived some of my doctors...

Lately my spleen has reached a ridiculous size and my liver has been affected too. I may have have to do splenectomy. I'd be grateful to have reactions mainly by bloggers who've had their spleen removed. I need to know what to expect and for how long. Thanks!


If you want, I can talk to you about it.  My dad has this too.   DeannaMarie

Subject: RE: myelofibrosis
Date: 05/08/2007

 

On 5/7/2007 Deannamarie wrote:

 

On 5/4/2007 Quo Vadis wrote:

I've been diagnozed with myelofibrosis 14 (fourteen) years ago! At the time my life expectancy was 3-5 years, top. Well, it seems I outlived some of my doctors...

Lately my spleen has reached a ridiculous size and my liver has been affected too. I may have have to do splenectomy. I'd be grateful to have reactions mainly by bloggers who've had their spleen removed. I need to know what to expect and for how long. Thanks!


If you want, I can talk to you about it.  My dad has this too.   DeannaMarie

Yes, I do want to talk about with you DeannaMarie. It will have to be through e-mail because I live far away from you.

 

Caregiver
Caregiver
Deannamarie
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Subject: RE: myelofibrosis
Date: 06/04/2007
We had my dad see a 3rd doctor last week.  He is on Thalidimine and a new doctor said maybe we can try chemotherapy to help stimulate his red blood count.  Today he is very weak--Red blood count is 8.7 and he will have a blood tran tomorrow.  His spleen is large, but, his dr. said he needs to keep this because it does help make some blood.  If it gets too large, they can put radiation on it to shrink it.  He has been very weak lately but the new dr. in Philly says we can try new options.  I hope this helps.   DeannaMarie
Caregiver
Caregiver
Deannamarie
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Subject: RE: myelofibrosis
Date: 06/11/2007
Hi, I hope you are doing well.  It would be great to hear from you.   DeannaMarie
Caregiver
Caregiver
Deannamarie
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Subject: RE: myelofibrosis
Date: 06/11/2007

 

On 5/7/2007 Deannamarie wrote:

 

On 5/4/2007 Quo Vadis wrote:

I've been diagnozed with myelofibrosis 14 (fourteen) years ago! At the time my life expectancy was 3-5 years, top. Well, it seems I outlived some of my doctors...

Lately my spleen has reached a ridiculous size and my liver has been affected too. I may have have to do splenectomy. I'd be grateful to have reactions mainly by bloggers who've had their spleen removed. I need to know what to expect and for how long. Thanks!


If you want, I can talk to you about it.  My dad has this too.   DeannaMarie


 

Subject: RE: myelofibrosis
Date: 08/21/2008

 

On 6/4/2007 Deannamarie wrote:

We had my dad see a 3rd doctor last week.  He is on Thalidimine and a new doctor said maybe we can try chemotherapy to help stimulate his red blood count.  Today he is very weak--Red blood count is 8.7 and he will have a blood tran tomorrow.  His spleen is large, but, his dr. said he needs to keep this because it does help make some blood.  If it gets too large, they can put radiation on it to shrink it.  He has been very weak lately but the new dr. in Philly says we can try new options.  I hope this helps.   DeannaMarie

 

Yesterday my Mother was released from the hospital and told she cannot work anylonger.  We are packing her us  to take her back to Mississippi.  Her primary Hemo is on vacation and will not return to Philly until Monday.  We want her to receive a second opinion today or tomorrow!!!  We need a doctor now

She cannot make red blood cells on her on.  She has received 30 unitsof blood over a recent period.  She has fribroid tissue in her boon marrow she makes no red blood cells on her own.

 Please call us today at

--Message edited by CancerCompass staff. For personal protection, phone number removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

.  My Mother is in Wilmington, De and we can see you asap.

 Romericus

 

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