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Acute leukaemia
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polycythemia vera ???
Hi every one ,Im fady 30 years old My doctor said I highly suggestive polycythemia rubra vera ..Hg 17.1 Hct 49.6 platlets 800 Im very worried about prognosis and survival could any one help me ? thanks
Hi every one ,Im fady 30 years old My doctor said I highly suggestive polycythemia rubra vera ..Hg 17.1 Hct 49.6 platlets 800 Im very worried about prognosis and survival could any one help me ? thanks
fady
in
MPN Voice
7 years ago
When CLL Goes Bad
A week after the 2016 ASH meeting, the CLL Society held our 2nd annual CLL Patient Educational Forum at City of Hope in Duarte, CA. After the forum, I had a chance to chat with Dr. Steve Rosen about the new data that provides hope for patients whose CLL has transformed to Richter Transformation. You
A week after the 2016 ASH meeting, the CLL Society held our 2nd annual CLL Patient Educational Forum at City of Hope in Duarte, CA. After the forum, I had a chance to chat with Dr. Steve Rosen about the new data that provides hope for patients whose CLL has transformed to Richter Transformation. You
bkoffman
CLL CURE Hero
in
CLL Support
7 years ago
Myelofibrosis
I joined this group to inform myself about PV which my husband was diagnosed with 8 years ago. His last haematology appt he was informed he now has Myelofibrosis . He has been complaining of bad pain in his leg and has no energy. In the last couple of weeks the pain has become extreme. His dr prescribed
I joined this group to inform myself about PV which my husband was diagnosed with 8 years ago. His last haematology appt he was informed he now has Myelofibrosis . He has been complaining of bad pain in his leg and has no energy. In the last couple of weeks the pain has become extreme. His dr prescribed
Marianjones54
in
MPN Voice
7 years ago
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AML shock.
Hi my mum has just been diagnosed with acute myloid leukemia. This has been quite a shock not only to mum but all our family. She had been suffering for some months with anemia and suddenly went down hill last month. Questions are constantly going around in my head, why my mum? She was always as fit
Hi my mum has just been diagnosed with acute myloid leukemia. This has been quite a shock not only to mum but all our family. She had been suffering for some months with anemia and suddenly went down hill last month. Questions are constantly going around in my head, why my mum? She was always as fit
Mumsdaughter
in
Leukaemia CARE
7 years ago
Key questions to ask your consultant
Hi everyone, sorry if you thought from the title of this message that I am providing the answers - instead, I would like your views. If you want the main point of this post skip to end, but it might help give better answers if you read through] [
aside:
For anyone with the stamina, here is my
Hi everyone, sorry if you thought from the title of this message that I am providing the answers - instead, I would like your views. If you want the main point of this post skip to end, but it might help give better answers if you read through] [
aside:
For anyone with the stamina, here is my
Davdow
in
CLL Support
7 years ago
Update for followers
I note I have 11 followers and I'm surprised I have not provided an update for quite a while. I started Obinutuzumab and venetoclax in march 2016 with 75 percent CLL in my bone marrow aged 47. I had some early challenges but by August I had only 0.08 percent! Mrd positive. Next bone marrow biopsy
I note I have 11 followers and I'm surprised I have not provided an update for quite a while. I started Obinutuzumab and venetoclax in march 2016 with 75 percent CLL in my bone marrow aged 47. I had some early challenges but by August I had only 0.08 percent! Mrd positive. Next bone marrow biopsy
Corin850
in
CLL Support
7 years ago
Some questions...
Hi, I was diagnosed with CLL a year ago and am on watch & wait. I'm wondering why the lymphocyte number actually decreases sometimes? Also, I have been sick a lot lately even though my numbers are better. Any tips on staying well? Thanks. :)
Hi, I was diagnosed with CLL a year ago and am on watch & wait. I'm wondering why the lymphocyte number actually decreases sometimes? Also, I have been sick a lot lately even though my numbers are better. Any tips on staying well? Thanks. :)
KHuff
in
CLL Support
7 years ago
Good results
Hi Peeps, just to let you that my visit to see my Haematolagist today was all good. WCC 4.3 Neut 2.1 Hb 148 Haematocrit 44.4 Plt 355 he was really pleased with me and said that all my counts were behaving themselves WHoop !!! He also checked my spleen as I have been experiencing some sharp pain on my
Hi Peeps, just to let you that my visit to see my Haematolagist today was all good. WCC 4.3 Neut 2.1 Hb 148 Haematocrit 44.4 Plt 355 he was really pleased with me and said that all my counts were behaving themselves WHoop !!! He also checked my spleen as I have been experiencing some sharp pain on my
Superwoman
in
MPN Voice
7 years ago
Natural does not mean safer. Red Yeast Rice, sold as Statin alternative, has similar risks!
[i]...the common perception that natural is safer didn't pan out in the study of the Italian Surveillance System of Natural Health Products, similar to the findings of a prior French government analysis of adverse event reports it received on red yeast rice.[/i] [i]:[/i] [i]Red yeast rice supplements
[i]...the common perception that natural is safer didn't pan out in the study of the Italian Surveillance System of Natural Health Products, similar to the findings of a prior French government analysis of adverse event reports it received on red yeast rice.[/i] [i]:[/i] [i]Red yeast rice supplements
AussieNeil
Partner
in
CLL Support
7 years ago
Zydelig (idelalisib) first line... NO!
I have had a few emails and PMs asking about the use of Zydelig (idelalisib) for first line, since patients know I'm on this combined with rituxan. I direct you to the newly revised drug label, which states...
[i]1 INDICATIONS AND USAGE[/i]
[i]1.1 Relapsed Chronic Lymphocytic Leukemia[/i
I have had a few emails and PMs asking about the use of Zydelig (idelalisib) for first line, since patients know I'm on this combined with rituxan. I direct you to the newly revised drug label, which states...
[i]1 INDICATIONS AND USAGE[/i]
[i]1.1 Relapsed Chronic Lymphocytic Leukemia[/i
Cllcanada
Top Poster CURE Hero
in
CLL Support
7 years ago
Every day advice for patients receiving treatment for blood cancers. What would you expect?
Leukaemia care are developing a booklet for patients who have a blood cancer and are receiving chemotherapy. ( Hints and tips for new patients.) Please let us know what you would have liked when you were diagnosed and receiving treatment.
Leukaemia care are developing a booklet for patients who have a blood cancer and are receiving chemotherapy. ( Hints and tips for new patients.) Please let us know what you would have liked when you were diagnosed and receiving treatment.
LCNurse
LeukaemiaCARE Nurse
in
Leukaemia CARE
7 years ago
MPN Voice Nottingham Support Group – January meeting details
The first meeting for 2017 will take place on Wednesday 18 January, 6 pm – 7.30 pm Maggie’s Centre, Gate 3, Nottingham City Hospital Campus, Hucknall Road, Nottingham, NG5 1PH The speaker will be Melissa Tyers, Myeloma and Haematology Complementary Therapist, who is part of the team in Hayward House
The first meeting for 2017 will take place on Wednesday 18 January, 6 pm – 7.30 pm Maggie’s Centre, Gate 3, Nottingham City Hospital Campus, Hucknall Road, Nottingham, NG5 1PH The speaker will be Melissa Tyers, Myeloma and Haematology Complementary Therapist, who is part of the team in Hayward House
Mazcd
MPNVoice
in
MPN Voice
7 years ago
Bendamustine vs FCR
My consultant is discussing treatment options with me. Been in W and W for almost 6 years but now my ALC is over145 and my haemaglobin is drifting down below 120. He is suggesting that Bendamustine with Rituximab will be a better option for me than FCR because of some particular presentation of my condition
My consultant is discussing treatment options with me. Been in W and W for almost 6 years but now my ALC is over145 and my haemaglobin is drifting down below 120. He is suggesting that Bendamustine with Rituximab will be a better option for me than FCR because of some particular presentation of my condition
Clovelly
in
CLL Support
7 years ago
MDS UK Patient and Family Forum Birmingham, UK Saturday, 4th February 2017 10.00 am – 16.30 pm
This FREE event will be held at The National Motorcycle Museum Coventry Road, Hampton in Arden Solihull, B92 0EJ This meeting is free of charge and open to MDS patients and their guests. Patients and their families will have the opportunity to participate in an informal discussion regarding their quality-of-life
This FREE event will be held at The National Motorcycle Museum Coventry Road, Hampton in Arden Solihull, B92 0EJ This meeting is free of charge and open to MDS patients and their guests. Patients and their families will have the opportunity to participate in an informal discussion regarding their quality-of-life
LCNurse
LeukaemiaCARE Nurse
in
Leukaemia CARE
7 years ago
Our available booklets
We currently have booklets on the following information : Step by Step on AML - direct download http://www.leukaemiacare.org.uk/resources/step-by-step-on-
acute
-myeloid-
leukaemia
Step by Step on APL - direct download http://www.leukaemiacare.org.uk/resources/step-by-step-on-
acute
-promyelocytic-
leukaemia
We currently have booklets on the following information : Step by Step on AML - direct download http://www.leukaemiacare.org.uk/resources/step-by-step-on-
acute
-myeloid-
leukaemia
Step by Step on APL - direct download http://www.leukaemiacare.org.uk/resources/step-by-step-on-
acute
-promyelocytic-
leukaemia
NicoleLeukaemiaCare
Administrator
in
Leukaemia CARE
7 years ago
Initial weight gains & Higher platelet counts on Jakafi???
Happy New Year fellow MPN-ers... :) Just curious if anyone else has had similar results in their initial journey with Ruxolitinib? It is only my third week (on Jakafi), and perhaps I am expecting too much too soon... I am sleeping better, my itching seems to have abated, and I am getting the occasional
Happy New Year fellow MPN-ers... :) Just curious if anyone else has had similar results in their initial journey with Ruxolitinib? It is only my third week (on Jakafi), and perhaps I am expecting too much too soon... I am sleeping better, my itching seems to have abated, and I am getting the occasional
socrates_8
in
MPN Voice
7 years ago
Chronic lymphocytic leukemia
Hi I'm new here and have been researching. This is my story. Late oct. 2016 during a routine mammogram an enlarged lymphnode was seen under my left arm. After an ultra sound and a needle biopsy I was diagnosed with low grade B cell lymphoma. Oncologist wanted an excisional biopsy so had a lymphnode
Hi I'm new here and have been researching. This is my story. Late oct. 2016 during a routine mammogram an enlarged lymphnode was seen under my left arm. After an ultra sound and a needle biopsy I was diagnosed with low grade B cell lymphoma. Oncologist wanted an excisional biopsy so had a lymphnode
Grandmajoanie
in
CLL Support
7 years ago
Green tea extract? And vitamins?
Hi I'm 44 recently diagnosed with CLL, this is my first time posting. I've heard that Green tea extract is very helpful, however I suffer from insomnia and both the decaf and regular green tea make my heart pound and I can't sleep. Does anybody have advice around this? Also are there other supplements
Hi I'm 44 recently diagnosed with CLL, this is my first time posting. I've heard that Green tea extract is very helpful, however I suffer from insomnia and both the decaf and regular green tea make my heart pound and I can't sleep. Does anybody have advice around this? Also are there other supplements
Elizabekro6
in
CLL Support
7 years ago
Acute myeloid leukaemia
Hi my name is Donna in December 2013 I went into hospital with what I thought then was tonsillitis only to be told the next morning i had cancer and they had to do a bone marrow biopsy to confirm that it was that for sure. My world was turned upside down as you can imagine I went into denial about it
Hi my name is Donna in December 2013 I went into hospital with what I thought then was tonsillitis only to be told the next morning i had cancer and they had to do a bone marrow biopsy to confirm that it was that for sure. My world was turned upside down as you can imagine I went into denial about it
Donna3380
in
Leukaemia CARE
8 years ago
Should I push for another Bone Marrow Biopsy?oh and Happy new year everyone
Hi Hope you all had a great Christmas. I've posted a few times on here so won't bore you all with all the details again. Keeping it short and sweet I was diagnosed last September with PV following a bone marrow biopsy. I've been suffering alot with a number of symptoms but the one that has been a real
Hi Hope you all had a great Christmas. I've posted a few times on here so won't bore you all with all the details again. Keeping it short and sweet I was diagnosed last September with PV following a bone marrow biopsy. I've been suffering alot with a number of symptoms but the one that has been a real
James1731
in
MPN Voice
7 years ago
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