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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
6 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
6 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
6 years ago
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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
6 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
6 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
6 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
6 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
6 years ago
Treatment via injection
Yesterday our consultant explained that our 14 year old daughter might need to move into a weekly subcutaneous injection. For the life of me I can’t remember the name of the injection. Does anyone know? Our daughter has started to show significant side effects to Eltrombopag and so we’re having to consider
Yesterday our consultant explained that our 14 year old daughter might need to move into a weekly subcutaneous injection. For the life of me I can’t remember the name of the injection. Does anyone know? Our daughter has started to show significant side effects to Eltrombopag and so we’re having to consider
Bellazac1971
in
ITP Support Association
6 years ago
Confused are the dr.s still using chemo with new drugs
Hi everyone, I am near treatment. When I read these posts about people on the new drugs it seems like they are taking them with chemo. My doctor says he does not use chemo anymore. Are they bringing the chemo back with the new drugs. Why not have the clinical trials with only the new drugs and no chemo
Hi everyone, I am near treatment. When I read these posts about people on the new drugs it seems like they are taking them with chemo. My doctor says he does not use chemo anymore. Are they bringing the chemo back with the new drugs. Why not have the clinical trials with only the new drugs and no chemo
hmo1
in
CLL Support
6 years ago
Newly diagnosed
Just diagnosed, which was a surprise since I have no family history of cancer and lead a healthy life, but I served in an infantry unit with in Vietnam so agent orange exposure was the likely catalyst. Was diagnosed thru a local hemotolgist through flow cytometry test , said would get sick sometime in
Just diagnosed, which was a surprise since I have no family history of cancer and lead a healthy life, but I served in an infantry unit with in Vietnam so agent orange exposure was the likely catalyst. Was diagnosed thru a local hemotolgist through flow cytometry test , said would get sick sometime in
Tommy777
in
CLL Support
6 years ago
Jak 2 Negative 😕 confused 0klahoma, USA Bone marrow biopsy?? 😨 told i was diagnosed with Polycythemia Vera 2 years prior.. 😕
It's been awhile since i wrote a brief post or concern. Having a bone marrow biopsy on the 8th January 2018.. Hard to believe 2 years since the day diagnosed. So many different things has happened since. More and many more test to get it all figured out. Hope that this New Year 4 all of us bring new
It's been awhile since i wrote a brief post or concern. Having a bone marrow biopsy on the 8th January 2018.. Hard to believe 2 years since the day diagnosed. So many different things has happened since. More and many more test to get it all figured out. Hope that this New Year 4 all of us bring new
Toshabeatthis
in
MPN Voice
6 years ago
New booklets
Hello all, Just popping in to tell you that a further two booklets have become available on our website: CLL - this is a review booklet, which means it has been updated to be as up-to-date and informative as possible. You can download it here: http://www.leukaemiacare.org.uk/resources/chronic-lymphocytic-leukaemia
Hello all, Just popping in to tell you that a further two booklets have become available on our website: CLL - this is a review booklet, which means it has been updated to be as up-to-date and informative as possible. You can download it here: http://www.leukaemiacare.org.uk/resources/chronic-lymphocytic-leukaemia
NicoleLeukaemiaCare
Administrator
in
Leukaemia CARE
6 years ago
Cll and fatigue
I was diagnosed in November 2017 with stage 0 cll; FISH test is negative; and now waiting on NGS/foundation test results. The biggest problem I have right now is chronic fatigue that is on the point of being debilitating, also infrequent headaches. My family doctor prescribed Adderall to help with the
I was diagnosed in November 2017 with stage 0 cll; FISH test is negative; and now waiting on NGS/foundation test results. The biggest problem I have right now is chronic fatigue that is on the point of being debilitating, also infrequent headaches. My family doctor prescribed Adderall to help with the
TXteacher
in
CLL Support
6 years ago
Autogenic training..
Hello BLF friends This is how I came to meditation in fact. Truth is I had a small cancer years ago..I felt alright while I had gathered my energy to fight it but I needed the relaxation technique to get on with family life and work. It is a suggestive method. In fact I was taught to do my own, once
Hello BLF friends This is how I came to meditation in fact. Truth is I had a small cancer years ago..I felt alright while I had gathered my energy to fight it but I needed the relaxation technique to get on with family life and work. It is a suggestive method. In fact I was taught to do my own, once
Hidden
in
Lung Conditions Community Forum
6 years ago
Stem cell transplant
Hello! So I have just had my monthly visit with my CLL haemotologist. Preparing to go onto a trial with Ibrutinib and Venetoclax. Glands swollen and large all over. I am 11q unmutated lymphocytes trending upwards at 50 and last month were 33. Hb going slightly downwards but not bad. Everything else good
Hello! So I have just had my monthly visit with my CLL haemotologist. Preparing to go onto a trial with Ibrutinib and Venetoclax. Glands swollen and large all over. I am 11q unmutated lymphocytes trending upwards at 50 and last month were 33. Hb going slightly downwards but not bad. Everything else good
DebLeeCox
in
CLL Support
6 years ago
Leukemia/Lmphoma CLL/SLL
I was wondering if anyone can help with a question. Under which does CLL fall leukemia or lymphoma? The same with SLL.
I was wondering if anyone can help with a question. Under which does CLL fall leukemia or lymphoma? The same with SLL.
Naka
in
CLL Support
6 years ago
Need help dosing turmeric and green tea for CLL
Diagnosed with CLL in October 2017 and the doctor said I don’t need medication. He mentioned turmeric and green tea can have a benefit but couldn’t legally or ethically tell me how much to take. I am at a loss and would appreciate help.
Diagnosed with CLL in October 2017 and the doctor said I don’t need medication. He mentioned turmeric and green tea can have a benefit but couldn’t legally or ethically tell me how much to take. I am at a loss and would appreciate help.
Mwagner
in
CLL Support
6 years ago
What is happening?
Hello!! I had terrible 2 days. Our doctor couldn't continue with RB theraphy because my husbands HGB counts only 5. They started to blood transfusion and made a Bone Marrow biopsy. The doctor said he has to find the reason of this low HGB, maybe the CLL has transformed to something else. We have to
Hello!! I had terrible 2 days. Our doctor couldn't continue with RB theraphy because my husbands HGB counts only 5. They started to blood transfusion and made a Bone Marrow biopsy. The doctor said he has to find the reason of this low HGB, maybe the CLL has transformed to something else. We have to
aylinozel
in
CLL Support
6 years ago
do i have polycethemia?
Hi my name is malk. During my visit to my psychiatrist my doc did blood test as they usually do every six months. I am obviously concerned with some of my readings and wanted to see what you guys thought. WBC. 4.79. 3.8-12.8 RBC. 6.04 4.2- 5.7 Hemoglobin. 16.7. 14-18.0 Hematocrit. 50. 42.2
Hi my name is malk. During my visit to my psychiatrist my doc did blood test as they usually do every six months. I am obviously concerned with some of my readings and wanted to see what you guys thought. WBC. 4.79. 3.8-12.8 RBC. 6.04 4.2- 5.7 Hemoglobin. 16.7. 14-18.0 Hematocrit. 50. 42.2
emem1976
in
MPN Voice
7 years ago
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