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Mantle cell lymphoma (MCL)
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The road ahead
My oncologist called me yesterday and said they had found a donor match for a stem cell transplant and did I want to proceed? So a little of my story, I have been on IBRUTINUB for two years and am currently feel great as my lymphocyte count is 16.5 and neutrophils at 3.8. He said because of my higher
My oncologist called me yesterday and said they had found a donor match for a stem cell transplant and did I want to proceed? So a little of my story, I have been on IBRUTINUB for two years and am currently feel great as my lymphocyte count is 16.5 and neutrophils at 3.8. He said because of my higher
steve_canada
in
CLL Support
4 years ago
Update from my Appointment
Hi All, I want to thank everyone for the kind words of support, good thoughts, and prayers for my appointment with a new specialist yesterday. I appreciate it so much. Here’s what I learned: 1.I liked the team a great deal. Everyone was very kind, really listened to me, and had excellent information
Hi All, I want to thank everyone for the kind words of support, good thoughts, and prayers for my appointment with a new specialist yesterday. I appreciate it so much. Here’s what I learned: 1.I liked the team a great deal. Everyone was very kind, really listened to me, and had excellent information
Moonmyst
in
CLL Support
4 years ago
Is there any information yet on the COVID-19 vaccines for post Bone Marrow Transplant patients?
I had my transplant in 2014 and have seen a few articles about the way the vaccines interact with the immune system.
I had my transplant in 2014 and have seen a few articles about the way the vaccines interact with the immune system.
colinparker1967
in
MPN Voice
4 years ago
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CLL Australian Webinar 21 October 2020. Keynote speaker Prof Peter Hillmen, Leeds UK. Interview of Sharon Winton CEO Lymphoma Australia, Q&A
Join MC
Julie McCrossin
and keynote speaker - the world renowned clinician and researcher -
Prof. Peter Hillmen
from St James’s University Hospital Leeds, for a webinar that
promises
to be energetic and full of new information. People from all countries are welcome to join the webinar
Join MC
Julie McCrossin
and keynote speaker - the world renowned clinician and researcher -
Prof. Peter Hillmen
from St James’s University Hospital Leeds, for a webinar that
promises
to be energetic and full of new information. People from all countries are welcome to join the webinar
AussieNeil
Partner
in
CLL Support
4 years ago
Gene SRSF2
I'm new here, but have private messaged Hunter who is an inspiration and interesting fact finder. I have MF progressed from PV last year but my recent visit to consultant showed a further 2 mutants. I'm Jak2 positive with SRSF2+1DH2. He has made a referral for Stem Cell Transplant. Is there anyone out
I'm new here, but have private messaged Hunter who is an inspiration and interesting fact finder. I have MF progressed from PV last year but my recent visit to consultant showed a further 2 mutants. I'm Jak2 positive with SRSF2+1DH2. He has made a referral for Stem Cell Transplant. Is there anyone out
ktaylor5563
in
MPN Voice
4 years ago
TREATMENT OPTION FOR TRISOMY 12
Hi Dr. Aussie Neil! I am pleased to write to you once again about my test result. As i previously indicated, a year ago i was diagnosed with CLL Rai Stage II B and put on R-CVP chemoimmunoterapy and now 4 months since i took the last 6th infusion of 6 cycles recommended for my treatment. But still i
Hi Dr. Aussie Neil! I am pleased to write to you once again about my test result. As i previously indicated, a year ago i was diagnosed with CLL Rai Stage II B and put on R-CVP chemoimmunoterapy and now 4 months since i took the last 6th infusion of 6 cycles recommended for my treatment. But still i
amaagabg2020
in
CLL Support
4 years ago
Ultra V - Cycle 4
Hi, all, I wanted to give an update on my husbands progress in the Ultra V trial (3 drug combo:Ublituximab, Umbrilisib, & Venetoclax) . (For reference - ha - this is his first treatment, 13q, unmutated, Notch1) He is almost done with Cycle 4, which is the cycle where Venetoclax is added/ramping.
Hi, all, I wanted to give an update on my husbands progress in the Ultra V trial (3 drug combo:Ublituximab, Umbrilisib, & Venetoclax) . (For reference - ha - this is his first treatment, 13q, unmutated, Notch1) He is almost done with Cycle 4, which is the cycle where Venetoclax is added/ramping.
WDSmith
in
CLL Support
4 years ago
anti parietal cell antibody test For b12
anti parietal cell antibody test For b12 is it worth ?
anti parietal cell antibody test For b12 is it worth ?
Ulrich-vi
in
Pernicious Anaemia Society
4 years ago
TPLL
I want to thank you all again for welcoming me into your community. Mike's cancer diagnosis has been very unique. As has his treatment. I don't recall what I have already shared, but his actual diagnosis ended up being TPLL (Tcell Prolymphocytic Leukemia). His WBC count went from 432,000 on 9/30 to 530,000
I want to thank you all again for welcoming me into your community. Mike's cancer diagnosis has been very unique. As has his treatment. I don't recall what I have already shared, but his actual diagnosis ended up being TPLL (Tcell Prolymphocytic Leukemia). His WBC count went from 432,000 on 9/30 to 530,000
Whatadayitwas
in
CLL Support
4 years ago
Some good news and hope
A very special day today. My wife Jan was diagnosed with an incurable blood cancer CLL this day 9 years ago age 39. We are in Ireland. After 3 very sick years we were fortunate that she was able to access a clinical trial in the UK and in 2014 started a drug Ibrutinib which targets the cancer. Her
A very special day today. My wife Jan was diagnosed with an incurable blood cancer CLL this day 9 years ago age 39. We are in Ireland. After 3 very sick years we were fortunate that she was able to access a clinical trial in the UK and in 2014 started a drug Ibrutinib which targets the cancer. Her
Irishcll
in
CLL Support
4 years ago
Be alert of Secondary MDS
My father is successfully fighting prostate cancer since 3.5 yrs. His cemo (by pills) for 6 months then 40 radiations went well after testical removal. But his hemoglobin started to be low like 9 from 12. We asked doctor couple of times he just asked us to focus on PSA which is 0.01. But now my father
My father is successfully fighting prostate cancer since 3.5 yrs. His cemo (by pills) for 6 months then 40 radiations went well after testical removal. But his hemoglobin started to be low like 9 from 12. We asked doctor couple of times he just asked us to focus on PSA which is 0.01. But now my father
Kshiprakapoor
in
Advanced Prostate Cancer
4 years ago
Life after transplant
I read a lot about people struggling after transplant to get back to normal life and it’s clear that for many “normal” is not what they had before diagnosis. I don’t know if I am in a minority or we only tend to speak out when things are bad but my life is amazing now. My bloods are all in normal ranges
I read a lot about people struggling after transplant to get back to normal life and it’s clear that for many “normal” is not what they had before diagnosis. I don’t know if I am in a minority or we only tend to speak out when things are bad but my life is amazing now. My bloods are all in normal ranges
KAS8
in
CLL Support
4 years ago
Newly diagnosed and hoping for a bit of advice
Hi, Thankyou to all those who have put so much into this site. Its been a huge help in the last few days since I started trying to find out more about SLL. I'm a 46 year old male in the UK who felt ill (exhausted, night sweats, generally weak and achy muscles) for around 2 years with the symptoms very
Hi, Thankyou to all those who have put so much into this site. Its been a huge help in the last few days since I started trying to find out more about SLL. I'm a 46 year old male in the UK who felt ill (exhausted, night sweats, generally weak and achy muscles) for around 2 years with the symptoms very
Pdaquinas
in
CLL Support
4 years ago
Occasional sore tongue
It seems my tongue and sometimes the roof of my mouth feel like I burnt myself with a hot beverage when that is not the case. Sometimes brushing the area with my tooth brush seems to help. I’ve tried all sorts of toothpaste formulations. In can vary during the day and from day to day. I avoid any toothpastes
It seems my tongue and sometimes the roof of my mouth feel like I burnt myself with a hot beverage when that is not the case. Sometimes brushing the area with my tooth brush seems to help. I’ve tried all sorts of toothpaste formulations. In can vary during the day and from day to day. I avoid any toothpastes
Karenjaninaz
in
PMRGCAuk
4 years ago
Anyone have experience with Venclexta capped at 200 mg?
I am a 62 yr old woman and will be starting Obinutuzumab in 2 days with Venclexta added my 4th week. I was diagnosed with SLL/CLL May 2019 and was watch and wait until now. It has been confined to my lymph nodes and my blood tests have been in the normal range. Treatment is starting due to increase in
I am a 62 yr old woman and will be starting Obinutuzumab in 2 days with Venclexta added my 4th week. I was diagnosed with SLL/CLL May 2019 and was watch and wait until now. It has been confined to my lymph nodes and my blood tests have been in the normal range. Treatment is starting due to increase in
Flute117
in
CLL Support
4 years ago
MDS and AML
Despite feeling lethargic and tired for over two years and going to the doctors on a regular basis and having over a dozen blood tests abd no referrals earlier we have had the awful news this week that my partner has both MDS and AML and goes into hospital today for 4/5 weeks of chemo with view to stem
Despite feeling lethargic and tired for over two years and going to the doctors on a regular basis and having over a dozen blood tests abd no referrals earlier we have had the awful news this week that my partner has both MDS and AML and goes into hospital today for 4/5 weeks of chemo with view to stem
sportydad
in
Leukaemia Support
4 years ago
CLL Society Dr. Koffman's ASCO 2020 "Top 12" Picks #s 12, 11, 10
30%2C+2020+Alert&utm_medium=email #11 Clinical activity of anti-ROR1 antibody cirmtuzumab in combination with ibrutinib thttps://cllsociety.org/2020/06/asco-2020-top-12-11-clinical-activity-of-cirmtuzumab-an-anti-ror1-antibody-in-combination-with-ibrutinib-interim-results-of-a-phase-ib-ii-study-in-
mantle
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cell
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lymphoma
-mcl-or-chronic-l
30%2C+2020+Alert&utm_medium=email #11 Clinical activity of anti-ROR1 antibody cirmtuzumab in combination with ibrutinib thttps://cllsociety.org/2020/06/asco-2020-top-12-11-clinical-activity-of-cirmtuzumab-an-anti-ror1-antibody-in-combination-with-ibrutinib-interim-results-of-a-phase-ib-ii-study-in-
mantle
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cell
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lymphoma
-mcl-or-chronic-l
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
Omg how do some doctors get there degree
just taken my 15 yo daughter to doct as has history of low b12 and iron, her injections were stopped last year on a paediatrician advice and to monitor every 3 months which we have been doing and have stayed pretty stable even though she tested positive to parietal cell antibody, shes been complaining
just taken my 15 yo daughter to doct as has history of low b12 and iron, her injections were stopped last year on a paediatrician advice and to monitor every 3 months which we have been doing and have stayed pretty stable even though she tested positive to parietal cell antibody, shes been complaining
sbadd
in
Pernicious Anaemia Society
4 years ago
Omg how do some doctors get a degree
just taken my 15 yo daughter to doct as has history of low b12 and iron, her injections were stopped last year on a paediatrician advice and to monitor every 3 months which we have been doing and have stayed pretty stable even though she tested positive to parietal cell antibody, shes been complaining
just taken my 15 yo daughter to doct as has history of low b12 and iron, her injections were stopped last year on a paediatrician advice and to monitor every 3 months which we have been doing and have stayed pretty stable even though she tested positive to parietal cell antibody, shes been complaining
sbadd
in
Thyroid UK
4 years ago
Ntpobnp blood test
Hi all. I had a bone marrow transplant 2 years ago. It put stress on my heart. Last week i had a echocardiogram which has come back good!!! Though my bnp level is 600... i am 38. So too high. My consultant is not worried though. Does this sound right?? Does a high bnp always mean heart failure? Back
Hi all. I had a bone marrow transplant 2 years ago. It put stress on my heart. Last week i had a echocardiogram which has come back good!!! Though my bnp level is 600... i am 38. So too high. My consultant is not worried though. Does this sound right?? Does a high bnp always mean heart failure? Back
Jalola
in
British Heart Foundation
4 years ago
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