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Mantle cell lymphoma (MCL)
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Stem cell transplant saved me
I had stage 4 started with rituxin and bendamustine chemo relapsed had RChop it didn’t work had stem cell transplant have been in remission for 7 years do it!
I had stage 4 started with rituxin and bendamustine chemo relapsed had RChop it didn’t work had stem cell transplant have been in remission for 7 years do it!
patricih
in
Non Hodgkin's Lymphoma Friends
3 years ago
Auto Stem Cell transplant?
Hi, Curious to know if anyone out there has had R-chop, then relapsed and the next line of treatment recommended was SCT? I've been battling Marginal Zone lymphoma (2016), transformed to DLBCL (2018) and now it's back again. The auto process sounds very scary (dangerous), and with a 30-50% success rate
Hi, Curious to know if anyone out there has had R-chop, then relapsed and the next line of treatment recommended was SCT? I've been battling Marginal Zone lymphoma (2016), transformed to DLBCL (2018) and now it's back again. The auto process sounds very scary (dangerous), and with a 30-50% success rate
skinkade
in
Non Hodgkin's Lymphoma Friends
3 years ago
Butterfingers! Feeling frustrated and poor.
I am dyspraxic, which means that I have always been extremely clumsy and have terrible executive functioning. With advancing age, my dyspraxia has also meant that I have also experienced increasing aphasia - I can often see/hear the word in my brain, it just doesn't make it to my mouth. Since being on
I am dyspraxic, which means that I have always been extremely clumsy and have terrible executive functioning. With advancing age, my dyspraxia has also meant that I have also experienced increasing aphasia - I can often see/hear the word in my brain, it just doesn't make it to my mouth. Since being on
Hidden
in
PMRGCAuk
3 years ago
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Rasburicase/Allopurinol
Hi, I am in the first week of ramp up of Venetoclax. I was hospitalized for 2 days for the first dose. I had Rasburicase IV, but I am not sure if I should be taking Allopurinol daily at home. I should have asked, too stressed. I am at high risk of TLS, but very little effect on large node yet. Thanks
Hi, I am in the first week of ramp up of Venetoclax. I was hospitalized for 2 days for the first dose. I had Rasburicase IV, but I am not sure if I should be taking Allopurinol daily at home. I should have asked, too stressed. I am at high risk of TLS, but very little effect on large node yet. Thanks
Hidden
in
CLL Support
3 years ago
THE USE OF DAPSONE FOR SUBCUTANEOUS ISSUES
Has anyone else been prescribed the Medication DAPSONE? I initially was prescribed the usual suspect (meds)when I was first diagnosed with Panniculitus in 2018. All of them made me deathly ill. I ran across articles for the drug Dapsone and asked my Rumy if I could take it. She prescribed it for me
Has anyone else been prescribed the Medication DAPSONE? I initially was prescribed the usual suspect (meds)when I was first diagnosed with Panniculitus in 2018. All of them made me deathly ill. I ran across articles for the drug Dapsone and asked my Rumy if I could take it. She prescribed it for me
Goinglong10
in
LUPUS UK
3 years ago
WARWICK'S ASCT ~ LATEST UPDATE...
Evening all... :-) Below I have Posted Warwick's latest Update on his Stem Cell Transplant journey... Best wishes all, stay safe & well... Steve
[i]Re: WARWICK's ASCT Journey Begins Today...[/i]
Post by Warwick » Fri May 21, 2021 10:09 am Hello everybody I am now at day 86 post transplant
Evening all... :-) Below I have Posted Warwick's latest Update on his Stem Cell Transplant journey... Best wishes all, stay safe & well... Steve
[i]Re: WARWICK's ASCT Journey Begins Today...[/i]
Post by Warwick » Fri May 21, 2021 10:09 am Hello everybody I am now at day 86 post transplant
socrates_8
in
MPN Voice
3 years ago
First line treatment failure. Transformation.
My father has been on the combination obinutuzamb/venetoclax first line treatment for CLL with aggressive features since March 2020, and had his one year CT scan yesterday. We were so hopeful that Plan 1 would be promising, yet the results are very troubling. -CT Results: 1. There is new perirenal
My father has been on the combination obinutuzamb/venetoclax first line treatment for CLL with aggressive features since March 2020, and had his one year CT scan yesterday. We were so hopeful that Plan 1 would be promising, yet the results are very troubling. -CT Results: 1. There is new perirenal
Phs2385
in
CLL Support
3 years ago
A day of surprises
Hi all Yesterday I had the first face to face consultation since the pandemic. I must say I was wary of the reasons for this but went along anyway. The consultant reported that my blood tests results were unchanged and stable and the pegasys had reduced my spleen size by 0.7cm. He said that I am quite
Hi all Yesterday I had the first face to face consultation since the pandemic. I must say I was wary of the reasons for this but went along anyway. The consultant reported that my blood tests results were unchanged and stable and the pegasys had reduced my spleen size by 0.7cm. He said that I am quite
ConniesDad
in
MPN Voice
3 years ago
Hope you are all well.I was diagnosed with Waldenstrom's Macroglobumiea, Lymphoplasmacytic Lymphoma in November 2020.I have been having
Hope you are all well. I was diagnosed with Waldenstrom's Macroglobumiea, Lymphoplasmacytic Lymphoma in November 2020. I have been having regular blood tests which has shown that the cancerous cells have not increased and the haemoglobin levels are low but stable. I do not have any classic symptoms as
Hope you are all well. I was diagnosed with Waldenstrom's Macroglobumiea, Lymphoplasmacytic Lymphoma in November 2020. I have been having regular blood tests which has shown that the cancerous cells have not increased and the haemoglobin levels are low but stable. I do not have any classic symptoms as
bridgeoverriverkwai
in
Non Hodgkin's Lymphoma Friends
3 years ago
Information for people in the UK on Tocilizumab (Ro-Actemra) injections
Hello, and apologies for not posting for such a long time. As one of the few (and greatly privileged) LVV-GCA sufferers in the UK lucky enough to have been prescribed subcutaneous Tocilizumab injections, I have a couple of items of news. First of all, along with my husband, I have been a participant
Hello, and apologies for not posting for such a long time. As one of the few (and greatly privileged) LVV-GCA sufferers in the UK lucky enough to have been prescribed subcutaneous Tocilizumab injections, I have a couple of items of news. First of all, along with my husband, I have been a participant
Suzita76
in
PMRGCAuk
3 years ago
A fascinating podcast on the history and current state of stem cell regeneration.
Did you know humans make around 2 1/2 million red blood cells a second? Did you know the only the stem cell transplant that can currently be done is a bone marrow one? Did you know, at a guess, there have been something like 2 million bone marrow transplants to date. I came across this episode in the
Did you know humans make around 2 1/2 million red blood cells a second? Did you know the only the stem cell transplant that can currently be done is a bone marrow one? Did you know, at a guess, there have been something like 2 million bone marrow transplants to date. I came across this episode in the
Magentas
in
MPN Voice
3 years ago
Help make a drug to treat GvHD available to patients
You can help make a drug to treat GvHD available to patients in Canada, regardless of where you live. CLL Canada, along with an alliance of 8 other blood cancer organizations, is preparing patient input submissions for the Canadian Agency for Drugs and Technologies (CADTH) and Institut national d'excellence
You can help make a drug to treat GvHD available to patients in Canada, regardless of where you live. CLL Canada, along with an alliance of 8 other blood cancer organizations, is preparing patient input submissions for the Canadian Agency for Drugs and Technologies (CADTH) and Institut national d'excellence
CLL_Canada_Group
in
CLL Support
3 years ago
Covid Vaccine
Hi all hope you are all keeping safe a question i need some light on has anyone had the Covid vaccine with having a low platelet count (Thrombocytopenia )mine being 50 i have been hearing a lot who have had the vaccine and its made Platelet count drop i really dont want mine to drop any lower and
Hi all hope you are all keeping safe a question i need some light on has anyone had the Covid vaccine with having a low platelet count (Thrombocytopenia )mine being 50 i have been hearing a lot who have had the vaccine and its made Platelet count drop i really dont want mine to drop any lower and
cavi
in
PBC Foundation
3 years ago
Update to ? Tocilizumab
I recently wrote for advice prior to starting on Tocilizumab as I was little nervous about side effects. I have now had 3 injections and my CRP is back to normal so have started to taper my prednisone down again. However I have been having sharp pains in my head, Rt temporal area, but also above and
I recently wrote for advice prior to starting on Tocilizumab as I was little nervous about side effects. I have now had 3 injections and my CRP is back to normal so have started to taper my prednisone down again. However I have been having sharp pains in my head, Rt temporal area, but also above and
Hiland
in
PMRGCAuk
3 years ago
Ginger while on Warfarin?
I read a recent article about the positive effect of ginger on APS and Lupus in mice. Has anyone taken ginger supplements or ginger tea while on Warfarin? I know that ginger can interact with Warfarin but I am wondering if anyone has tried both at the same time. Thank you!
I read a recent article about the positive effect of ginger on APS and Lupus in mice. Has anyone taken ginger supplements or ginger tea while on Warfarin? I know that ginger can interact with Warfarin but I am wondering if anyone has tried both at the same time. Thank you!
Or81
in
Hughes Syndrome APS Forum
3 years ago
Hemoglobin
Dx in 2013 and have been treated with Ibrutinib then Venetoclax. Overall I have done well but over the last year my Hg has begun a slow trend of decrease, now in 11s. I realize that is not at all dangerous but I do get winded with any vigorous activity or when I travel to the mountains. I take the B
Dx in 2013 and have been treated with Ibrutinib then Venetoclax. Overall I have done well but over the last year my Hg has begun a slow trend of decrease, now in 11s. I realize that is not at all dangerous but I do get winded with any vigorous activity or when I travel to the mountains. I take the B
Fant1924
in
CLL Support
3 years ago
Organic apple cider vinegar "unpasteurized and unfiltered" ?
I am starting to use a very small quantity (spoons full ) of organic apple cider vinegar to spice-up vegetable puree. Can I use the "organic apple cider vinegar" which "unpasteurized and unfiltered" ? I have CLL under near normal CBC control with IMBRUVICA. Also, what if any benefit would any small
I am starting to use a very small quantity (spoons full ) of organic apple cider vinegar to spice-up vegetable puree. Can I use the "organic apple cider vinegar" which "unpasteurized and unfiltered" ? I have CLL under near normal CBC control with IMBRUVICA. Also, what if any benefit would any small
janvog
in
CLL Support
3 years ago
11q and 17p
I have read on the Fact Sheet about Test Before Treat that if a Fish Test shows a deletion of the 17 chromosome or del(17P) that BR treatment will not be effective and should be avoided. I am 11q deleted and had one treatment of BR some 23 months ago (March 2019) with a severe reaction. I have not had
I have read on the Fact Sheet about Test Before Treat that if a Fish Test shows a deletion of the 17 chromosome or del(17P) that BR treatment will not be effective and should be avoided. I am 11q deleted and had one treatment of BR some 23 months ago (March 2019) with a severe reaction. I have not had
Joffre1
in
CLL Support
3 years ago
Clinical trial with Acalabrutinib and Obinutuzumab
I have the opportunity to be part of a clinical trial. The purpose of the study is to understand if early intervention (people on W&W in the high or very high risk group of needing treatment in the next 2 years but current protocol would not yet be treated) of CLL/SLL using targeted therapy will lead
I have the opportunity to be part of a clinical trial. The purpose of the study is to understand if early intervention (people on W&W in the high or very high risk group of needing treatment in the next 2 years but current protocol would not yet be treated) of CLL/SLL using targeted therapy will lead
Reflectionofsky
in
CLL Support
3 years ago
Journey update: LVV/GCA, tocilizumab and exercise
I have been diagnosed with LVV/GCA beginning of February (though MRI/MRA and PET/CT were not fully conclusive). With the help of Tocilizumab I now arrived at 12.5 mg prednisolone per day. I know that this is a very fast taper but it worked well until now and from now on the steps will become much smaller
I have been diagnosed with LVV/GCA beginning of February (though MRI/MRA and PET/CT were not fully conclusive). With the help of Tocilizumab I now arrived at 12.5 mg prednisolone per day. I know that this is a very fast taper but it worked well until now and from now on the steps will become much smaller
DeepThought2
in
PMRGCAuk
3 years ago
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