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New to this and very afraid
Hello folks...My GP feels my bloods indicate CLL...PANIC. Referring me to a Haematology Doctor 58 with dependent kids and mortgage Any information re the below would be great. Immunophenotyping PB has been done with Tcell Tcell helper cells and cytoxiccell all low.. L22 L14 L7 B cells High 64 66
Hello folks...My GP feels my bloods indicate CLL...PANIC. Referring me to a Haematology Doctor 58 with dependent kids and mortgage Any information re the below would be great. Immunophenotyping PB has been done with Tcell Tcell helper cells and cytoxiccell all low.. L22 L14 L7 B cells High 64 66
Stew64
in
CLL Support
2 years ago
My MD Anderson doctor is leaving
I received a letter on Saturday that my oncologist at MD Anderson, Dr. Philip Thompson, is leaving effective January 3, 2023. Nooooooooo! Dr. Thompson is originally from Australia and has made the decision to return to Melbourne and join the Low-Grade Lymphoma and CLL group at the Peter MacCallum Cancer
I received a letter on Saturday that my oncologist at MD Anderson, Dr. Philip Thompson, is leaving effective January 3, 2023. Nooooooooo! Dr. Thompson is originally from Australia and has made the decision to return to Melbourne and join the Low-Grade Lymphoma and CLL group at the Peter MacCallum Cancer
Lisa-1959
in
CLL Support
2 years ago
Our 2022 Christmas Donations Appeal Will you help us to reach and support more CLL patients this Christmas?
This year has been another difficult year for everyone, especially for the vulnerable and the charities that support them, like CLL Support UK, the charity of which HealthUnlocked CLL Support is the online support presence.
We know that this
Christmas
may be more relaxed than the last
This year has been another difficult year for everyone, especially for the vulnerable and the charities that support them, like CLL Support UK, the charity of which HealthUnlocked CLL Support is the online support presence.
We know that this
Christmas
may be more relaxed than the last
AussieNeil
Partner
in
CLL Support
2 years ago
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Has anyone got any experience in coming off Tocilizumab to start on Methotrexate?
I have been on Tocilizumab since August 2021 but the funding for this is being withdrawn. I have been off steroids now for over 2 months so without the Toci I have nothing to ward off any flare-up of GCA. Due to being relatively asymptomatic before diagnosis and losing sight in one eye very quickly rheumatology
I have been on Tocilizumab since August 2021 but the funding for this is being withdrawn. I have been off steroids now for over 2 months so without the Toci I have nothing to ward off any flare-up of GCA. Due to being relatively asymptomatic before diagnosis and losing sight in one eye very quickly rheumatology
sequeluk
in
PMRGCAuk
2 years ago
Can Hydrea Resolve (fix) Marrow?
In a recent thread one report has HU providing a strong benefit to marrow, esp for ET, but some in PV too, discussed here: https://healthunlocked.com/mpnvoice/posts/148588347/high-low-jak2-and-risk-of-mf-progression This is a surprise. So I did a quick search and two further reports come up supporting
In a recent thread one report has HU providing a strong benefit to marrow, esp for ET, but some in PV too, discussed here: https://healthunlocked.com/mpnvoice/posts/148588347/high-low-jak2-and-risk-of-mf-progression This is a surprise. So I did a quick search and two further reports come up supporting
EPguy
in
MPN Voice
2 years ago
Preparations afoot for my stem cell transplant
I've finally got dates for my sct. I have a CT scan next week in preparation for radiotherapy to shrink my spleen . That will be followed by 6 days of radiotherapy as an out patient then 24 Jan I get admitted and start chemo. Donor cells getting infused a few days later. I knew all along this was going
I've finally got dates for my sct. I have a CT scan next week in preparation for radiotherapy to shrink my spleen . That will be followed by 6 days of radiotherapy as an out patient then 24 Jan I get admitted and start chemo. Donor cells getting infused a few days later. I knew all along this was going
Scaredy_cat
in
MPN Voice
1 year ago
MF and Fedratinib
I've had MF for over 30 years. I was rejected for transplant recently because not robust enough. I have been on Ruxolitinib for about 8 years very successfully but my already large spleen is growing again so my consultant has decided to switch me over to Fedratinib. I am grateful that there is an option
I've had MF for over 30 years. I was rejected for transplant recently because not robust enough. I have been on Ruxolitinib for about 8 years very successfully but my already large spleen is growing again so my consultant has decided to switch me over to Fedratinib. I am grateful that there is an option
Bullace
in
MPN Voice
2 years ago
Update on progress with MF and the FEDORA clinical trial
So to recap, I was diagnosed with primary MF in October 2022 and asked to join a new clinical trial called FEDORA. After many tests including a BMB, ultrasound on my abdomen, chest X-ray etc. I started on the pre medication of 400mg/day (in one dose) of Fedratinib in capsule form. This was the first
So to recap, I was diagnosed with primary MF in October 2022 and asked to join a new clinical trial called FEDORA. After many tests including a BMB, ultrasound on my abdomen, chest X-ray etc. I started on the pre medication of 400mg/day (in one dose) of Fedratinib in capsule form. This was the first
Flyingsteamer
in
MPN Voice
1 year ago
GP refusing to offer IFAB Test
I recently requested and Intrinsic Factor Antibody test with my GP and was told there's no need to do this test if my Parietal Cell antibody test was negative/normal. The Parietal Cell test was done in Jan 2021 and I assumed the IFAB was done at the same time and also came back normal. (I was unaware
I recently requested and Intrinsic Factor Antibody test with my GP and was told there's no need to do this test if my Parietal Cell antibody test was negative/normal. The Parietal Cell test was done in Jan 2021 and I assumed the IFAB was done at the same time and also came back normal. (I was unaware
cloudspotting
in
Pernicious Anaemia Society
2 years ago
Passing it on.
I was wondering if leukaemia can be hereditary. I was diagnosed with CLL 3 years ago, my wife died from AML and the thought of my children being susceptible crossed my mind. I did ask Doctor Google the question but it seems the jury is out on that subject.
I was wondering if leukaemia can be hereditary. I was diagnosed with CLL 3 years ago, my wife died from AML and the thought of my children being susceptible crossed my mind. I did ask Doctor Google the question but it seems the jury is out on that subject.
Bigglesworth
in
CLL Support
2 years ago
How IFN targets Jak2 mutation
A fairly recent report discusses how IFN works against the mutation. I posted in a thread, but seems worth a top post. It's complex stuff but seems consistent. -In sum, it seems IFN forces damage to otherwise hidden Jak2's by stirring things up, but mutant ones fail faster once stirred. -- https
A fairly recent report discusses how IFN works against the mutation. I posted in a thread, but seems worth a top post. It's complex stuff but seems consistent. -In sum, it seems IFN forces damage to otherwise hidden Jak2's by stirring things up, but mutant ones fail faster once stirred. -- https
EPguy
in
MPN Voice
2 years ago
test interpretation
I have a rather long summary page from my flow cytrometry test and I understand none of it. Can someone here please help? translate to common language I can understand? I apologize if this is not the right thing to post. I had to push to get the test done as within this past year my lymphocytes and white
I have a rather long summary page from my flow cytrometry test and I understand none of it. Can someone here please help? translate to common language I can understand? I apologize if this is not the right thing to post. I had to push to get the test done as within this past year my lymphocytes and white
DianeSH
in
CLL Support
2 years ago
Celebrating -nasties have gone!
After several weeks of strong antibiotics, told pseudomonas etc has gone, no further action, three cheers! Now I have to get over tiredness caused by them, and hopefully go out in Jag when feel ok. Yes Jag has replacement seat belt lock, passed its MOT. Now going to Nebulise, always things to keep
After several weeks of strong antibiotics, told pseudomonas etc has gone, no further action, three cheers! Now I have to get over tiredness caused by them, and hopefully go out in Jag when feel ok. Yes Jag has replacement seat belt lock, passed its MOT. Now going to Nebulise, always things to keep
Morrison10
in
Lung Conditions Community Forum
2 years ago
A diet for CLL
Dear friends, I hope you are staying well. Last week I ate fruit with vitamine C, I exagerated with quantity and felt really bad. My lymph nodes were swallen and I felt very big fatigue. I m still on watch and wait (I was diagnosed with Cll in January 2018) and I wish to stay on it as long
Dear friends, I hope you are staying well. Last week I ate fruit with vitamine C, I exagerated with quantity and felt really bad. My lymph nodes were swallen and I felt very big fatigue. I m still on watch and wait (I was diagnosed with Cll in January 2018) and I wish to stay on it as long
Lela1212
in
CLL Support
2 years ago
Results from Phase 2 study of nivolumab plus ibrutinib in patients with diffuse large b-cell Richter Transformation of CLL
A research article that reports on "[i]A Phase 2 Study of Nivolumab Combined with Ibrutinib in Patients with Diffuse Large B-cell Richter Transformation of CLL[/i]" was published in the journal Blood Advances this week and provides some encouraging data for a population that is very challenging to treat
A research article that reports on "[i]A Phase 2 Study of Nivolumab Combined with Ibrutinib in Patients with Diffuse Large B-cell Richter Transformation of CLL[/i]" was published in the journal Blood Advances this week and provides some encouraging data for a population that is very challenging to treat
CLLerinOz
Administrator
in
CLL Support
2 years ago
Stem Cell Transplant (stc) after care
Can someone who has been through a sct, or their carer, give me info about the time after hospital discharge please? We live more than 30 minutes from the transplant centre so the hospital is providing us with a flat in Bristol where my husband will be my carer. I know the early days he'll need to
Can someone who has been through a sct, or their carer, give me info about the time after hospital discharge please? We live more than 30 minutes from the transplant centre so the hospital is providing us with a flat in Bristol where my husband will be my carer. I know the early days he'll need to
Scaredy_cat
in
MPN Voice
2 years ago
Request - Reco for excellent haematologists in Portugal
Hello all, Will move to Portugal in the near future. Looking for excellent haematologist recommendations in Portugal. I am hoping to get reco from people who have personally had positive experience with the said haematologists. Also request for the names of hospitals or institutes focusing on Hematology
Hello all, Will move to Portugal in the near future. Looking for excellent haematologist recommendations in Portugal. I am hoping to get reco from people who have personally had positive experience with the said haematologists. Also request for the names of hospitals or institutes focusing on Hematology
Iwillwin123
in
MPN Voice
2 years ago
Essential Thrombocythaemia
Hi, I have just been diagnosed with a rear blood condition called Essential Thrombocythaemia (ET The courses of treatment offered to me are Hydroxycarbamide and Pegasys. I would like to ask if anyone else has the same condition and if they are taking one of the mentioned drugs and if so how do you find
Hi, I have just been diagnosed with a rear blood condition called Essential Thrombocythaemia (ET The courses of treatment offered to me are Hydroxycarbamide and Pegasys. I would like to ask if anyone else has the same condition and if they are taking one of the mentioned drugs and if so how do you find
Snowking
in
Leukaemia Support
2 years ago
essential thrombocytosis or mf
not sure if my et is progressing to mf, Hb 112,normal mcv ,wbc 5 .2,neutrophils 3.6,platelets 352,eGfr 88,lft normal, ldh595.mild splenomegaly at 13.7. medication is aspirin,symtoms are fatigue, dry mouth,frequent urinating and of course anxiety. Does anyone think i should be on some treatment Thank
not sure if my et is progressing to mf, Hb 112,normal mcv ,wbc 5 .2,neutrophils 3.6,platelets 352,eGfr 88,lft normal, ldh595.mild splenomegaly at 13.7. medication is aspirin,symtoms are fatigue, dry mouth,frequent urinating and of course anxiety. Does anyone think i should be on some treatment Thank
glyndale
in
MPN Voice
2 years ago
Five-year results for the iFCG regimen: first-line treatment of CLL patients with mutated IGHV and without del(17p)/TP53 mutation
Published 4 months ago, https://journals.lww.com/hemasphere/Fulltext/2022/06003/S149__LONG_TERM_OUTCOMES_OF_IFCG_REGIMEN_FOR.50.aspx is an update of the Phase 2 study S149, initiated in 2017 and previously reported here in "Novel Combos Are Shaking Up the CLL Landscape but FCR still has its place" https
Published 4 months ago, https://journals.lww.com/hemasphere/Fulltext/2022/06003/S149__LONG_TERM_OUTCOMES_OF_IFCG_REGIMEN_FOR.50.aspx is an update of the Phase 2 study S149, initiated in 2017 and previously reported here in "Novel Combos Are Shaking Up the CLL Landscape but FCR still has its place" https
bennevisplace
in
CLL Support
2 years ago
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