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Mast cell leukaemia
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MDS?
Originally diagnosed w ET. Was on HU and then taken off after 18 mos due to anemia. Platelets have remained low normal but HCT have continued to drop. Anemia not iron related. Now Dr has mentioned BMB for MDS or post ET MF? What the h**? Is MDS still a MPN? Seems like opposite?
Originally diagnosed w ET. Was on HU and then taken off after 18 mos due to anemia. Platelets have remained low normal but HCT have continued to drop. Anemia not iron related. Now Dr has mentioned BMB for MDS or post ET MF? What the h**? Is MDS still a MPN? Seems like opposite?
Kerri2
in
MPN Voice
4 years ago
CLL with CAD
CLL with Cold Agglutinin Disease New to the group, 72 yr old male, served in Vietnam from 1967 to 1970 Diagnosed in Feb 2020 Would like to hear from anyone CLL and CAD (Cold Agglutinin Disease)
CLL with Cold Agglutinin Disease New to the group, 72 yr old male, served in Vietnam from 1967 to 1970 Diagnosed in Feb 2020 Would like to hear from anyone CLL and CAD (Cold Agglutinin Disease)
Hidden
in
CLL Support
4 years ago
Join us this morning at 11am for the launch or the Acute Myeloid Leukaemia (AML) North of England Virtual Support Group
10th August at 11am – Launch meeting – Hosted by Jessica Turner, Leukaemia Care North-West Regional Coordinator. Our Acute Myeloid Leukaemia (AML) North Virtual Support Group is for anyone who has been diagnosed with AML in the North of England. Our meetings are a great way for you to meet someone
10th August at 11am – Launch meeting – Hosted by Jessica Turner, Leukaemia Care North-West Regional Coordinator. Our Acute Myeloid Leukaemia (AML) North Virtual Support Group is for anyone who has been diagnosed with AML in the North of England. Our meetings are a great way for you to meet someone
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
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NIGHT SWEATS
I would appreciate input from members on Night Sweats. Although I am a little over two years in W&W, and I understand very well the symptoms my Hematologist/Oncologist will look for regarding triggers for treatment (RBC count, Platelet Count, increased infections, and Night Sweats) I am uncertain if
I would appreciate input from members on Night Sweats. Although I am a little over two years in W&W, and I understand very well the symptoms my Hematologist/Oncologist will look for regarding triggers for treatment (RBC count, Platelet Count, increased infections, and Night Sweats) I am uncertain if
wizzard166
in
CLL Support
4 years ago
New Kid on the Block
Hi,everyone,just joined the group and reading the posts really feel for those suffering with fatigue, something fortunately I have never had with P.M.R..I do however get flare ups with SEVERE pain mainly in the neck and shoulders.Difficult sometimes to know whether its P.M.R. or a trapped nerve or pulled
Hi,everyone,just joined the group and reading the posts really feel for those suffering with fatigue, something fortunately I have never had with P.M.R..I do however get flare ups with SEVERE pain mainly in the neck and shoulders.Difficult sometimes to know whether its P.M.R. or a trapped nerve or pulled
BeeDee1940
in
PMRGCAuk
4 years ago
Cytogenetics showed dup(1q)
Have just received a copy of the last phone consultation under diagnosis: polycythemia vera 1997 JAK2 V617F positive/Post polycythemia myelofibrosis 2019, came this it wasn't mentioned in the call. Cytogenetics showed dup(1q) anyone know what it means as my next phone consultant is not till the end of
Have just received a copy of the last phone consultation under diagnosis: polycythemia vera 1997 JAK2 V617F positive/Post polycythemia myelofibrosis 2019, came this it wasn't mentioned in the call. Cytogenetics showed dup(1q) anyone know what it means as my next phone consultant is not till the end of
Kabuki
in
MPN Voice
4 years ago
Aussies, please consider enrolling in this study into the personal impact of CLL and help our world wide CLL/SLL community
Australians diagnosed with chronic lymphocytic leukaemia/small lymphocytic lymphoma (CLL/SLL), whether in watch and wait or in treatment:- [i]- Are you ready to have your say on the support, care & information patients need? - Are you ready for your experience to help others in the future? - Are you
Australians diagnosed with chronic lymphocytic leukaemia/small lymphocytic lymphoma (CLL/SLL), whether in watch and wait or in treatment:- [i]- Are you ready to have your say on the support, care & information patients need? - Are you ready for your experience to help others in the future? - Are you
AussieNeil
Partner
in
CLL Support
4 years ago
Towards personalised management of CLL? Ibrutinib study reveals new way to gauge patients’ response to treatment
Excerpts from https://www.genengnews.com/topics/omics/cll-drug-study-finds-single-cell-analysis-can-gauge-response-rate/ *** Ibrutinib, a Bruton tyrosine kinase (BTK) inhibitor, has remarkable efficacy in most patients with CLL. It is becoming the standard of care for most patients requiring treatment
Excerpts from https://www.genengnews.com/topics/omics/cll-drug-study-finds-single-cell-analysis-can-gauge-response-rate/ *** Ibrutinib, a Bruton tyrosine kinase (BTK) inhibitor, has remarkable efficacy in most patients with CLL. It is becoming the standard of care for most patients requiring treatment
bennevisplace
in
CLL Support
4 years ago
Welcome
Welcome all the new people who joined in the last few months, I appreciate you don’t want to be here but it is a good place to get help. We have heard from a few of you but it would be great to hear from all of you in new posts. It helps us by knowing how we can help you. Key items are: Which MPN?
Welcome all the new people who joined in the last few months, I appreciate you don’t want to be here but it is a good place to get help. We have heard from a few of you but it would be great to hear from all of you in new posts. It helps us by knowing how we can help you. Key items are: Which MPN?
MFBMT2011
in
MPN Voice
4 years ago
Join us tomorrow at 4.00pm 5th August for the launch of the AML Virtual Support Group (South UK)
Our friendly virtual support group is open to anybody from the south of the UK that has been affected by a acute myeloid leukaemia diagnosis. This is a great opportunity to meet new people and share in real time your experiences. Also you will gain insights from a leading AML specialist haematologist
Our friendly virtual support group is open to anybody from the south of the UK that has been affected by a acute myeloid leukaemia diagnosis. This is a great opportunity to meet new people and share in real time your experiences. Also you will gain insights from a leading AML specialist haematologist
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
UK CLL Forum - updated post lockdown guidance for the management of CLL
During the height of the COVID19 pandemic the UK CLL Forum issued guidance on managing CLL patients. This guidance has now been updated with post lockdown guidance. Many of us will be disappointed to see that the first point is to continue to 'consider telephone or video conference appointments if feasible
During the height of the COVID19 pandemic the UK CLL Forum issued guidance on managing CLL patients. This guidance has now been updated with post lockdown guidance. Many of us will be disappointed to see that the first point is to continue to 'consider telephone or video conference appointments if feasible
Jm954
Administrator
in
CLL Support
4 years ago
How to tell young children
Hi, my husband is in the stages of being confirmed to have CLL. He already has CML which he is in remission with, and was diagnosed with when he 25 (now 38). We have a 3.5yrs son, and I was wondering if anyone has any tips how to approach the subject with him. He knows things are not right at home, and
Hi, my husband is in the stages of being confirmed to have CLL. He already has CML which he is in remission with, and was diagnosed with when he 25 (now 38). We have a 3.5yrs son, and I was wondering if anyone has any tips how to approach the subject with him. He knows things are not right at home, and
Savage27
in
CLL Support
4 years ago
SF3B1 Mutations
We've had a couple of members mention that they are positive for SF3B1 Mutations so I thought it would be worth a short simplified post about it. SF3B1 are predominantly sub clonal genetic events in CLL and are not unique to CLL as they are also found in other haematological disease such as myelodysplastic
We've had a couple of members mention that they are positive for SF3B1 Mutations so I thought it would be worth a short simplified post about it. SF3B1 are predominantly sub clonal genetic events in CLL and are not unique to CLL as they are also found in other haematological disease such as myelodysplastic
Jm954
Administrator
in
CLL Support
4 years ago
FCR oral versus iv
Hi I have read that cyclophosphamide and fludarabine can be given orally instead of IV. Is oral better tolerated in terms side effects? I guess oral formulation avoids need to attend hospital more frequently for infusions too. Is there anything else I should consider if needing tx with FCR? Thanks
Hi I have read that cyclophosphamide and fludarabine can be given orally instead of IV. Is oral better tolerated in terms side effects? I guess oral formulation avoids need to attend hospital more frequently for infusions too. Is there anything else I should consider if needing tx with FCR? Thanks
CarpeDiem03
in
CLL Support
4 years ago
Worried About Your CLL? A CLL EXPERT PHYSICIAN CAN GIVE YOU A 2nd OPINION ONLINE AT NO COST TO YOU! (Applies to USA Residents only)
https://cllsociety.org/cll-society-expert-access/ CLL Society Expert Access™ Program ( Unfortunately this is available to USA Residents only - Sorry) - We believe that access to CLL expert care is critical for every patient to receive his or her best possible care. Access to a CLL expert provides proven
https://cllsociety.org/cll-society-expert-access/ CLL Society Expert Access™ Program ( Unfortunately this is available to USA Residents only - Sorry) - We believe that access to CLL expert care is critical for every patient to receive his or her best possible care. Access to a CLL expert provides proven
lankisterguy
Volunteer
in
CLL Support
4 years ago
Anyone know of links between MPN’s and working on military radars?
Hi, I got diagnosed in April this year with ET with Jak2 mutation. Up until the discovery I was fit and healthy. I understood that MPN’s were rare and weren’t related to lifestyle choices. But I had a sudden moment of “what if” whilst at work today. I’ve served over 14 years in the RAF as a comms
Hi, I got diagnosed in April this year with ET with Jak2 mutation. Up until the discovery I was fit and healthy. I understood that MPN’s were rare and weren’t related to lifestyle choices. But I had a sudden moment of “what if” whilst at work today. I’ve served over 14 years in the RAF as a comms
MadamCholet1
in
MPN Voice
4 years ago
On the possible use of mushrooms and natural supplements, and their potential benefits, with citations
The following post provides information and NON-MEDICAL advice I've come across that I'll be presenting to my oncologist tomorrow. I thought it might be of value for others among us to consider, to further research (I provide citations), to comment on, and/or to speak to their doctor(s) and oncologist
The following post provides information and NON-MEDICAL advice I've come across that I'll be presenting to my oncologist tomorrow. I thought it might be of value for others among us to consider, to further research (I provide citations), to comment on, and/or to speak to their doctor(s) and oncologist
Pogee
in
CLL Support
4 years ago
5th Anniversary
Hi Folks , , many of you will be aware of my Stem Cell Transplant for Primary Myelofibrosis which happened 5 years ago today. . It wasn't an easy ride in my case and my battle with Graft Versus Host Disease is well documented on the Forum. Also the issues caused by high dose steroids needed to save my
Hi Folks , , many of you will be aware of my Stem Cell Transplant for Primary Myelofibrosis which happened 5 years ago today. . It wasn't an easy ride in my case and my battle with Graft Versus Host Disease is well documented on the Forum. Also the issues caused by high dose steroids needed to save my
JediReject
in
MPN Voice
4 years ago
25 with ET
Hello all, I am new here. I am 25, got diagnosed with ET with JAK2 mutation positive. The funny part is I am doctor myself, just got my general physician degree after 6 years of hard work. Now it is 3 more years to complete the specialty of my choice, then I will be a specialist doctor. So, being from
Hello all, I am new here. I am 25, got diagnosed with ET with JAK2 mutation positive. The funny part is I am doctor myself, just got my general physician degree after 6 years of hard work. Now it is 3 more years to complete the specialty of my choice, then I will be a specialist doctor. So, being from
DoctorWithET
in
MPN Voice
4 years ago
Haematocrit
Hi all I haven't posted for a while but am interested how many have a high red blood count (HCT) when diagnosed with ET or MF Thanks in advance Graham
Hi all I haven't posted for a while but am interested how many have a high red blood count (HCT) when diagnosed with ET or MF Thanks in advance Graham
Graham7694
in
MPN Voice
4 years ago
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