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Ideas for supporting dad in his last days
It's transformed in the past couple of weeks to an
acute
leukaemia
and yesterday his consultant told us there's nothing more that can be done for him. He's at home. He spends 98% of his time sleeping.
It's transformed in the past couple of weeks to an
acute
leukaemia
and yesterday his consultant told us there's nothing more that can be done for him. He's at home. He spends 98% of his time sleeping.
Sebnose
in
Leukaemia CARE
5 years ago
I’ve had Polycythemia Vera for 10 years. Dr. suspects it is turning into Myleofibrosis
Good morning. I was diagnosed about 10 years ago with Polycythemia Vera. I am Jak2 positive. I was prescribed hydroxyurea and one low-dose aspirin a day. I also had phlebotomies when my hematocrit was over 42. Recently my hematologist felt like my polycythemia vera May be changing into Myleofibrosis.
Good morning. I was diagnosed about 10 years ago with Polycythemia Vera. I am Jak2 positive. I was prescribed hydroxyurea and one low-dose aspirin a day. I also had phlebotomies when my hematocrit was over 42. Recently my hematologist felt like my polycythemia vera May be changing into Myleofibrosis.
Cknight6
in
MPN Voice
5 years ago
Bendamustine and Rituximab and Low Lymphocyte Count
After two sessions of B and R my ALC is 0.23. It went as low as 0.03 soon after the first session. I don't know whether such low numbers are good or bad. Does anyone else on B and R have anything to say about this? What number do we want?
After two sessions of B and R my ALC is 0.23. It went as low as 0.03 soon after the first session. I don't know whether such low numbers are good or bad. Does anyone else on B and R have anything to say about this? What number do we want?
profrich
in
CLL Support
5 years ago
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High Red Blood counts neg. Jak2 and all mutation tests
I have been diagnosed with primary polycythemia because all of my red blood counts were all quite high. My platelets were normal but monocytes were high and mutation tests came back negative. I’m scheduled to see hematologist in a month, it’s frustrating! I read that sometimes mutation ie jak2 sometimes
I have been diagnosed with primary polycythemia because all of my red blood counts were all quite high. My platelets were normal but monocytes were high and mutation tests came back negative. I’m scheduled to see hematologist in a month, it’s frustrating! I read that sometimes mutation ie jak2 sometimes
Cali-Med
in
MPN Voice
5 years ago
Jakafi
Diagnosed with myelofibrosis on 10/17. Began jakafi 3 weeks ago. Platelets went down to 80 and doctor told me to stop jakafi. Did that last night and experienced terrible stomach intestinal problems this morning. Has anyone out there had same experience?
Diagnosed with myelofibrosis on 10/17. Began jakafi 3 weeks ago. Platelets went down to 80 and doctor told me to stop jakafi. Did that last night and experienced terrible stomach intestinal problems this morning. Has anyone out there had same experience?
USSpurdy
in
MPN Voice
5 years ago
Chronic lymphocytic leukemia/B-cell prolymphocytic leukemia. A tutorial for physicians, useful for us too.
From Feb 2019 An extensive overview of CLL, directed at educating PCPs or GPs covering all aspects of the disease, investigation and treatment. https://www.cancertherapyadvisor.com/home/decision-support-in-medicine/hematology/chronic-lymphocytic-leukemia-b-cell-prolymphocytic-leukemia-2/ Jackie
From Feb 2019 An extensive overview of CLL, directed at educating PCPs or GPs covering all aspects of the disease, investigation and treatment. https://www.cancertherapyadvisor.com/home/decision-support-in-medicine/hematology/chronic-lymphocytic-leukemia-b-cell-prolymphocytic-leukemia-2/ Jackie
Jm954
Administrator
in
CLL Support
5 years ago
We eat what we are – let’s detoxify the word ‘chemical’
The only thing chemical free is a perfect vacuum. [i]"Food is a bunch of chemicals, nothing more, nothing less. When we eat, we eat chemicals. Some are simple, such as water or salt. Some are complex, such as the proteins in steak. But they’re all chemicals. There is no part of food that is not chemical
The only thing chemical free is a perfect vacuum. [i]"Food is a bunch of chemicals, nothing more, nothing less. When we eat, we eat chemicals. Some are simple, such as water or salt. Some are complex, such as the proteins in steak. But they’re all chemicals. There is no part of food that is not chemical
AussieNeil
Partner
in
CLL Support
5 years ago
UK CLL Clinical Trial Portfolio updated May 2019
The Portfolio of clinical trials available in the UK has been updated and is available on the main site. Thanks to Garry for helping to prepare this for us https://www.cllsupport.org.uk/article/uk-cll-clinical-trials-portfolio-may-2019
The Portfolio of clinical trials available in the UK has been updated and is available on the main site. Thanks to Garry for helping to prepare this for us https://www.cllsupport.org.uk/article/uk-cll-clinical-trials-portfolio-may-2019
Myrddin
in
CLL Support
5 years ago
Cheap Ibrutinib for B Cell Prolymphocitic Leukemia Patient in Pakistan
My father was diagnosed with B Cell Prolymphocitic Leukemia in March 2017. He received 6 Cycles of Chemotherapy (Rituximab+Bendamestine). Last cycle was received in January 2018. Now the disease has relapsed and doctor has advised Ibrutinib. In Pakistan Ibrutinib costs Pakistani Rupees 200,000/- per
My father was diagnosed with B Cell Prolymphocitic Leukemia in March 2017. He received 6 Cycles of Chemotherapy (Rituximab+Bendamestine). Last cycle was received in January 2018. Now the disease has relapsed and doctor has advised Ibrutinib. In Pakistan Ibrutinib costs Pakistani Rupees 200,000/- per
B-PLL_Pakistan
in
Leukaemia CARE
5 years ago
Cheap Ibrutinib for B Cell Prolymphocitic Leukemia Patient in Pakistan
My father was diagnosed with B Cell Prolymphocitic Leukemia in March 2017. He received 6 Cycles of Chemotherapy (Rituximab+Bendamestine). Last cycle was received in January 2018. Now the disease has relapsed and doctor has advised Ibrutinib. In Pakistan Ibrutinib costs Pakistani Rupees 200,000/- per
My father was diagnosed with B Cell Prolymphocitic Leukemia in March 2017. He received 6 Cycles of Chemotherapy (Rituximab+Bendamestine). Last cycle was received in January 2018. Now the disease has relapsed and doctor has advised Ibrutinib. In Pakistan Ibrutinib costs Pakistani Rupees 200,000/- per
B-PLL_Pakistan
in
CLL Support
5 years ago
What is the rate for someone with ET to progress to myelofibrosis?
I have slight increase in platelets and mild splenomegaly. My hematologist gave me 15% rate for progression to ET. Does anyone else has a percentage given from their hematologist?
I have slight increase in platelets and mild splenomegaly. My hematologist gave me 15% rate for progression to ET. Does anyone else has a percentage given from their hematologist?
Aneliv9
in
MPN Voice
5 years ago
My AED ...
Well I took plunge and bought a heart start or AED Quite scary but the do save lives BUT with any AED purchase CPR resuscitation know how is a must as they go hand in hand. https://youtu.be/msRft-g-k_s What the say flat on back head back and chest compressions hard and fast. Quite a feet for anyone
Well I took plunge and bought a heart start or AED Quite scary but the do save lives BUT with any AED purchase CPR resuscitation know how is a must as they go hand in hand. https://youtu.be/msRft-g-k_s What the say flat on back head back and chest compressions hard and fast. Quite a feet for anyone
Hidden
in
Lung Conditions Community Forum
5 years ago
Vitamin c and fibrosis
Can anyone offer incite as to whether vitamin c promotes fibrosis via collagen development from vitamin c? It has so many other benefits in haematological parameters that I want to continue it but cautious due to forming collagen fibrosis. Someone with a technical mind may be able to decipher this VERY
Can anyone offer incite as to whether vitamin c promotes fibrosis via collagen development from vitamin c? It has so many other benefits in haematological parameters that I want to continue it but cautious due to forming collagen fibrosis. Someone with a technical mind may be able to decipher this VERY
fee13
in
MPN Voice
5 years ago
Explainer: what’s actually in our blood?
[i]Blood is vitally important for our body. As it’s pumped around our body through veins and arteries, it transports oxygen from our lungs to all of the other organs, tissues and cells that need it. Blood also removes waste products from our organs and tissues, taking them to the liver and kidneys, where
[i]Blood is vitally important for our body. As it’s pumped around our body through veins and arteries, it transports oxygen from our lungs to all of the other organs, tissues and cells that need it. Blood also removes waste products from our organs and tissues, taking them to the liver and kidneys, where
AussieNeil
Partner
in
CLL Support
5 years ago
Updown Blood counts
Hello Everyone, Recently i have experience updown blood counts,i had continued to drop down in blood counts after four months of phlebotomy but CBC results up and down since last 10 days Before 10 days my CBC shows HB-16.9(range-13 to 17) Hct-47(40 to 50) RBC-5.1(4.50to 5.5) MCV-93(80to100) MCH-33.70
Hello Everyone, Recently i have experience updown blood counts,i had continued to drop down in blood counts after four months of phlebotomy but CBC results up and down since last 10 days Before 10 days my CBC shows HB-16.9(range-13 to 17) Hct-47(40 to 50) RBC-5.1(4.50to 5.5) MCV-93(80to100) MCH-33.70
Vigiindia
in
MPN Voice
5 years ago
Awaiting FISH results & bone marrow biopsy
Quick recap... diagnosed here in the U.K. December 2016... no issues whatsoever for 1 1/2 years and then last August started to develop unexplained infections roughly every 6-8 weeks since then... have been neutropenic on some of these occasions.. haemoglobin and platelet counts low but stable... wbc
Quick recap... diagnosed here in the U.K. December 2016... no issues whatsoever for 1 1/2 years and then last August started to develop unexplained infections roughly every 6-8 weeks since then... have been neutropenic on some of these occasions.. haemoglobin and platelet counts low but stable... wbc
AR0613
in
CLL Support
5 years ago
I have TP53
I was told I will not react to chemo (anymore) and based on my mutations is either CarT or Stem Cell Transplant. I am deadly afraid of the latter and can't afford CarT. Are there any Clinical trials for CarT at this point? Presently I am on Ibrutinib (have been for 10 months and doing relatively well
I was told I will not react to chemo (anymore) and based on my mutations is either CarT or Stem Cell Transplant. I am deadly afraid of the latter and can't afford CarT. Are there any Clinical trials for CarT at this point? Presently I am on Ibrutinib (have been for 10 months and doing relatively well
Doremefasol
in
CLL Support
5 years ago
Nana
I was diagnosed with cll just before Christmas in 2018. Needless to say I was absolutely floored as I did not even feel sick. I was referred to Dr. Ahmed Galal at the Duke Cancer Center. The day I walked into his office the Grimm reaper was riding on my back. This wonderful man looked at me and said
I was diagnosed with cll just before Christmas in 2018. Needless to say I was absolutely floored as I did not even feel sick. I was referred to Dr. Ahmed Galal at the Duke Cancer Center. The day I walked into his office the Grimm reaper was riding on my back. This wonderful man looked at me and said
Hidden
in
CLL Support
5 years ago
CLL night sweats
Having horrible night sweats...have 3 fans going..on watch and wait..highest WBC 50,000..any relief for this?
Having horrible night sweats...have 3 fans going..on watch and wait..highest WBC 50,000..any relief for this?
truff4507
in
CLL Support
5 years ago
Good News
I have had the results of my bone marrow biopsy this week and my six months of FCR chemo have done the trick, I am now clear of any signs of cll cancer cells. This obviously is a great relief and although fatigue is still part of my life I am hoping for many years of being cancer free. I wish every single
I have had the results of my bone marrow biopsy this week and my six months of FCR chemo have done the trick, I am now clear of any signs of cll cancer cells. This obviously is a great relief and although fatigue is still part of my life I am hoping for many years of being cancer free. I wish every single
dandelup
in
CLL Support
5 years ago
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