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Polycythemia enquiry
I am being investigated for Polycycthemia. I'm currently awaiting a nuclear cell mass test but my blood request says ' monitoring on chemotherapy , why is this on the request ? It also says old myeloid ?
I am being investigated for Polycycthemia. I'm currently awaiting a nuclear cell mass test but my blood request says ' monitoring on chemotherapy , why is this on the request ? It also says old myeloid ?
Kwebb
in
MPN Voice
7 years ago
Hyperbaric Oxygen Therapy
I am taking 20 Hyperbaric Treatments in an effort to increase my body's ability to make blood platelets. Hyperbaric increases the number of stem cells in a person's body by 800%. I hope the stem cells can fix my bone marrow so I make more platelets. If this approach to ITP is successful I will let everyone
I am taking 20 Hyperbaric Treatments in an effort to increase my body's ability to make blood platelets. Hyperbaric increases the number of stem cells in a person's body by 800%. I hope the stem cells can fix my bone marrow so I make more platelets. If this approach to ITP is successful I will let everyone
jjjamesholder
in
ITP Support Association
7 years ago
Hypersensitivity Pneumonitis
Hello everyone, I’m a newbie here and looking for any information on the above title. I’ve recently been diagnosed with fibrotic hypersensitivity pneumonitis and am so worried about my condition. Any info on the condition or anyone who also has the condition please feel free to communicate with me.
Hello everyone, I’m a newbie here and looking for any information on the above title. I’ve recently been diagnosed with fibrotic hypersensitivity pneumonitis and am so worried about my condition. Any info on the condition or anyone who also has the condition please feel free to communicate with me.
Hidden
in
Lung Conditions Community Forum
7 years ago
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My Spleen is no longer welcome!
Hi guys, I've not been here too much, I have been over on the liver pages. But I thought I would give you an update. So I have been waiting for transplant for 14 with no signs of it happening soon. My spleen is now literally taking over my body! Last scan it was 28cm, I saw one of my Heams last Wednesday
Hi guys, I've not been here too much, I have been over on the liver pages. But I thought I would give you an update. So I have been waiting for transplant for 14 with no signs of it happening soon. My spleen is now literally taking over my body! Last scan it was 28cm, I saw one of my Heams last Wednesday
Chelle_
in
MPN Voice
7 years ago
Newly diagnosed – ET Jak2+ with added drama!
A week later and everything changed again – I was told that the blood oncology team believed I was now at high risk of developing
acute
myeloid
leukaemia
and that I would need a stem cell transplant in the next few months! Obviously this was devastating.
A week later and everything changed again – I was told that the blood oncology team believed I was now at high risk of developing
acute
myeloid
leukaemia
and that I would need a stem cell transplant in the next few months! Obviously this was devastating.
Timjonze
in
MPN Voice
6 years ago
Myoproliferative Neoplasm Essential Thrombocytosis JAK 2
I am a long term MPN patient, Myoproliferative Neoplasm Essential Thrombocytosis JAK 2 mutation positive. I have taken Hydrea and aspirin for 14 months and have gained about 20 kilos in that short time. Has anyone else experienced this? Is it a side effect of the Hydrea. I take 500mg each day and my
I am a long term MPN patient, Myoproliferative Neoplasm Essential Thrombocytosis JAK 2 mutation positive. I have taken Hydrea and aspirin for 14 months and have gained about 20 kilos in that short time. Has anyone else experienced this? Is it a side effect of the Hydrea. I take 500mg each day and my
Hidden
in
MPN Voice
7 years ago
Need bone marrow biopsy
I had some blood work done consistently over 3 months which showed increasing white cell counts and consistent high level Platelets. Hematologist ordered blood smear and jak2 test. Smear results came back as: WBC - Leukocytosis, absolute neutrophilia and monocytosis type. Reactivity Noted PLTs - Thrombocytosis
I had some blood work done consistently over 3 months which showed increasing white cell counts and consistent high level Platelets. Hematologist ordered blood smear and jak2 test. Smear results came back as: WBC - Leukocytosis, absolute neutrophilia and monocytosis type. Reactivity Noted PLTs - Thrombocytosis
Howudoinaz
in
MPN Voice
7 years ago
Waiting on Bone Marrow Biopsy Scared...
So I haven't actually been diagnosed yet, but my Doc suggests polycythemia, Jak 2 was negative by CBC, also EPO was normal, white blood cells normal just my HCT and RBC and Hemoglobin always seem to be high. Doc ordered bone marrow biopsy and now im waiting for the results... The more I read the more
So I haven't actually been diagnosed yet, but my Doc suggests polycythemia, Jak 2 was negative by CBC, also EPO was normal, white blood cells normal just my HCT and RBC and Hemoglobin always seem to be high. Doc ordered bone marrow biopsy and now im waiting for the results... The more I read the more
pgleason210
in
MPN Voice
7 years ago
HI guys its me again
I am looking for people that suffer an MPN from Glasgow central belt Fife and Highlands I am campaigning for every hospital in Scotland which does not have a MPN clinical nurse specialists my argument these nurse specialists are worth their wait in Gold I do not where I would be without her she is at
I am looking for people that suffer an MPN from Glasgow central belt Fife and Highlands I am campaigning for every hospital in Scotland which does not have a MPN clinical nurse specialists my argument these nurse specialists are worth their wait in Gold I do not where I would be without her she is at
Scottishterrier
in
MPN Voice
7 years ago
Leukaemia Care - Patient advocate and GP training lead, Nick York, will be on Sky News from 9.15am
Patient advocate and GP training lead, Nick York, will be on Sky News from 9.15am today talking about why GPs are being urged to do more blood tests - find out more by tuning in. We hope to share his clip later today. At 2.30pm, the APPG on Blood Cancers will be holding a debate in Parliament on blood
Patient advocate and GP training lead, Nick York, will be on Sky News from 9.15am today talking about why GPs are being urged to do more blood tests - find out more by tuning in. We hope to share his clip later today. At 2.30pm, the APPG on Blood Cancers will be holding a debate in Parliament on blood
Myrddin
in
CLL Support
7 years ago
Road to a BMT... oops just got there (Day +50)
Happy New Year - wishing you all a healthy, peaceful and happy 2018 I can’t believe we are already at day 50 in our BMT process - we have been home for 3 weeks now and life is starting to normalize itself, as we all know it is once again a “new normal”. Every relapse, every new treatment results in CLL
Happy New Year - wishing you all a healthy, peaceful and happy 2018 I can’t believe we are already at day 50 in our BMT process - we have been home for 3 weeks now and life is starting to normalize itself, as we all know it is once again a “new normal”. Every relapse, every new treatment results in CLL
NMMP
in
CLL Support
7 years ago
cnsMpn
Anyone that attends a Haematology clinic with an mpn In the Glasgow or central belt or Fife I am trying to get more attending the Clinics I have one and she is brilliant it means the can attend clinics where it saves registrars coming down to do a clinic and helping deal with patients with an mpn that
Anyone that attends a Haematology clinic with an mpn In the Glasgow or central belt or Fife I am trying to get more attending the Clinics I have one and she is brilliant it means the can attend clinics where it saves registrars coming down to do a clinic and helping deal with patients with an mpn that
Scottishterrier
in
MPN Voice
7 years ago
MPN Voice Nottingham Support Group meetings 2018
The first meeting for 2018 will take place on Wednesday 17 January, 6 pm – 7.30 pm Meetings are held on the 3rd Wednesday of each month, except December, you are welcome to come along to any of the meetings, you do not need to book to attend, just turn up, there is no fee to attend and you are welcome
The first meeting for 2018 will take place on Wednesday 17 January, 6 pm – 7.30 pm Meetings are held on the 3rd Wednesday of each month, except December, you are welcome to come along to any of the meetings, you do not need to book to attend, just turn up, there is no fee to attend and you are welcome
Mazcd
MPNVoice
in
MPN Voice
7 years ago
CLL; when is treatment?
I am a new to this site; My white count was discovered to be 14 by my PCP; she sent me to oncologist; who sent me for blood tests; they took 13 viles; results she said is CLL; we will "wait and see". Eventually went up over 2 years to what it is this week; 69; when at 40 oncologist recommended I take
I am a new to this site; My white count was discovered to be 14 by my PCP; she sent me to oncologist; who sent me for blood tests; they took 13 viles; results she said is CLL; we will "wait and see". Eventually went up over 2 years to what it is this week; 69; when at 40 oncologist recommended I take
oldguy68
in
CLL Support
7 years ago
Lyn30
Hello, I have just joined this group. I was diagnosed with myelofibrosis last early September,then 3 weeks later the tests showed I also have low risk MDS. I would love to hear from anyone with myelofibrosis as this is a high risk condition for me. It is great to be in touch.
Hello, I have just joined this group. I was diagnosed with myelofibrosis last early September,then 3 weeks later the tests showed I also have low risk MDS. I would love to hear from anyone with myelofibrosis as this is a high risk condition for me. It is great to be in touch.
champ30
in
MPN Voice
7 years ago
8 months into OHSU drug trial (Obinituzumab, Ublituximab, Bendamustine) doing well!
Hello fellow CLL-ers! I haven't posted much, as we all know, balancing life and this disease proves challenging. I thought it might be time for an update in the New Year. I've been on TGR-1101 (Ublituximab or U2 as TG Therapeutics' calls it, I call it the Tiger), TGR-1202 (Obinituzumab or Gazyva),
Hello fellow CLL-ers! I haven't posted much, as we all know, balancing life and this disease proves challenging. I thought it might be time for an update in the New Year. I've been on TGR-1101 (Ublituximab or U2 as TG Therapeutics' calls it, I call it the Tiger), TGR-1202 (Obinituzumab or Gazyva),
ChrisLovesLife
in
CLL Support
7 years ago
This trial is going to reopen- Called CAPTIVATE. Ibrutinib plus venetoclax study sponsored by Pharmacyclics - Study Number PCYC-1142 .
FYI, The ibrutinib plus venetoclax study sponsored by Pharmacyclics is the PCYC-1142 trial. This trial has enrolled 150 patients thus far and was closed to new enrollment until this week but I am told enrollment has been reopened. I think it is about 6 locations. I am out of UC San Diego. https
FYI, The ibrutinib plus venetoclax study sponsored by Pharmacyclics is the PCYC-1142 trial. This trial has enrolled 150 patients thus far and was closed to new enrollment until this week but I am told enrollment has been reopened. I think it is about 6 locations. I am out of UC San Diego. https
Hoffy
in
CLL Support
7 years ago
The Progress and Promise of Gene Editing (CRISPR-Cas9) - What's next for the field: epigenetic editing, the 'dark genome
[i]"New technologies such as the CRISPR-Cas9 offer the possibility of altering an individual's genome, or even a generation's genome. : Most of the research involved ex vivo experiments -- removing cells, editing them in a lab and then replacing them. [u]While this process is "relatively easy" for immune
[i]"New technologies such as the CRISPR-Cas9 offer the possibility of altering an individual's genome, or even a generation's genome. : Most of the research involved ex vivo experiments -- removing cells, editing them in a lab and then replacing them. [u]While this process is "relatively easy" for immune
AussieNeil
Partner
in
CLL Support
7 years ago
Can anyone advise of any CLL specialist in London
When we should start treatment for CLL ? and shall I do biopsy of bone marrow if my PLT more than 100
When we should start treatment for CLL ? and shall I do biopsy of bone marrow if my PLT more than 100
al444
in
CLL Support
7 years ago
Dark Urine with Imbruvica ?
Back in 09 learned I had stage 4 CLL & went through 6 mo of FCR chemo....all went well until Aug of 17 when my white count started rising 10k per month... in Nov I started Imbruvica & my swollen neck glands went down in the first week while my WBC rose 30k... for the last mo my WBC has been slowly
Back in 09 learned I had stage 4 CLL & went through 6 mo of FCR chemo....all went well until Aug of 17 when my white count started rising 10k per month... in Nov I started Imbruvica & my swollen neck glands went down in the first week while my WBC rose 30k... for the last mo my WBC has been slowly
emarine
in
CLL Support
7 years ago
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