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Experiences with
Mantle cell lymphoma (MCL)
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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
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
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
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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
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
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
-
cell
-
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
-
cell
-
lymphoma
-mcl-or-chronic-l
bkoffman
CLL CURE Hero
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
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
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
When to expect a reoccurance of large B cell lymphoma and what is the treatment?
When I first got on a supportive chat I asked, how long do you get before a reoccurance when you are expecting a reoccurance of lymphoma. I was told the lymphoma I have is treatable, probably not curable. I'm back to oncology visits every 3 months. Chemotherapy finished in May or June or 2013. A
When I first got on a supportive chat I asked, how long do you get before a reoccurance when you are expecting a reoccurance of lymphoma. I was told the lymphoma I have is treatable, probably not curable. I'm back to oncology visits every 3 months. Chemotherapy finished in May or June or 2013. A
Dlindquist54
in
Non Hodgkin's Lymphoma Friends
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
Hi, I'm 20 years old. I have sickle cell disorder. But what bothers me most is that my eyes is always yellow, and it makes me feel shy.
I try to always drink water but most times drinking water makes me feel nauseated. I don't know why?
I try to always drink water but most times drinking water makes me feel nauseated. I don't know why?
Claregie
in
Sickle Cell Society
4 years ago
Is Calquence helping you with Lymphoma?
I have
Mantle
Cell
Lymphoma
, been through RChop (bought 4 years), could only tolerate 2 infusions of Bendamustine w/rituxin (bought 2 more years) and now DR wants me on Calquence. I suffered horrible migraines for 20 years when younger and am worried about headaches and bleeding.
I have
Mantle
Cell
Lymphoma
, been through RChop (bought 4 years), could only tolerate 2 infusions of Bendamustine w/rituxin (bought 2 more years) and now DR wants me on Calquence. I suffered horrible migraines for 20 years when younger and am worried about headaches and bleeding.
Keptindark
in
CLL Support
4 years ago
Rituxan
Hi everybody! I had an infusion today, and my doctor said my lymph nodes are getting smaller, but it is taking too long. He wants to give me an infusion of rituxan tomorrow and Iam concerned about side effects. Has anyone else had rituxan, and what did you experience?
Hi everybody! I had an infusion today, and my doctor said my lymph nodes are getting smaller, but it is taking too long. He wants to give me an infusion of rituxan tomorrow and Iam concerned about side effects. Has anyone else had rituxan, and what did you experience?
Vintagemama
in
CLL Support
4 years ago
Car-T and a bone marrow transplant
Is someone in their late 70's and older too old to have Car-T therapy or a bone marrow transplant?
Is someone in their late 70's and older too old to have Car-T therapy or a bone marrow transplant?
Bmarbler
in
CLL Support
4 years ago
Brain Inflammation
Last week I completed the MIN-102 trial which concluded with an MRI. The next day I received a call from the neurologist saying there are changes from the last MRI (9/19) and what is brain inflammation. She felt it urgent enough to prompt a video visit with me and my neurologist. I got the radiologist
Last week I completed the MIN-102 trial which concluded with an MRI. The next day I received a call from the neurologist saying there are changes from the last MRI (9/19) and what is brain inflammation. She felt it urgent enough to prompt a video visit with me and my neurologist. I got the radiologist
SongStream
in
AMN EASIER
4 years ago
New question regarding criteria
Does anyone know how old the lab criteria can be? I have taken a look at the American rheumatology diagnostic criteria and have seen that, for instance, WBC less than or equal to 40000 mm3 (can’t do the value thing so please bear with me. I have labs starting: 4/4/17 at 4.2 (low), 5/12/17 at 4.2, 7/10
Does anyone know how old the lab criteria can be? I have taken a look at the American rheumatology diagnostic criteria and have seen that, for instance, WBC less than or equal to 40000 mm3 (can’t do the value thing so please bear with me. I have labs starting: 4/4/17 at 4.2 (low), 5/12/17 at 4.2, 7/10
JennaShi
in
LUPUS UK
4 years ago
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