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Who else has Myelodysplastic Syndromes (MDS) in addition to their PCa?
Dx a month ago as having trilineage MDS with Ring Sideroblasts(MDS-RS), somewhere between low and intermediate. Described as bone marrow cancers and a bone marrow biopsy is required for dx. It morphs into Acute Myloid Leukemia in 30-40% of the cases. Know that my shit is weak and am searching for
Dx a month ago as having trilineage MDS with Ring Sideroblasts(MDS-RS), somewhere between low and intermediate. Described as bone marrow cancers and a bone marrow biopsy is required for dx. It morphs into Acute Myloid Leukemia in 30-40% of the cases. Know that my shit is weak and am searching for
SpencerBoy11
in
Advanced Prostate Cancer
2 years ago
Bone Marrow Transplant
A wonderful uplifting post to read first thing in the morning. You've made my day!
A wonderful uplifting post to read first thing in the morning. You've made my day!
Sivasi
in
MPN Voice
2 years ago
BONE MARROW TRANSPLANT
Good evening to you , I hope you are all well. I would like to share my special news with you all , today I completed day 2 of my conditioning ahead of my BMT on Thursday 2nd February 2023. I am both privileged and excited about my journey and have no fear or doubts. Special thanks to all of you,
Good evening to you , I hope you are all well. I would like to share my special news with you all , today I completed day 2 of my conditioning ahead of my BMT on Thursday 2nd February 2023. I am both privileged and excited about my journey and have no fear or doubts. Special thanks to all of you,
kevinbros
in
MPN Voice
2 years ago
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CLL Society interview - Dr. Shahzad Mustafa on What it Means to be Immunocompromised for Patients with CLL/SLL January 13, 2023
Dr. Shahzad Mustafa on What it Means to be Immunocompromised for Patients with CLL/SLL January 13, 2023 https://cllsociety.org/2023/01/dr-shahzad-mustafa-on-what-it-means-to-be-immunocompromised-for-patients-with-cll-sll/ https://youtu.be/DSOKTmffc-s - In this interview, Dr. Brian Koffman spoke
Dr. Shahzad Mustafa on What it Means to be Immunocompromised for Patients with CLL/SLL January 13, 2023 https://cllsociety.org/2023/01/dr-shahzad-mustafa-on-what-it-means-to-be-immunocompromised-for-patients-with-cll-sll/ https://youtu.be/DSOKTmffc-s - In this interview, Dr. Brian Koffman spoke
lankisterguy
Volunteer
in
CLL Support
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
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
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
COVID: Staying Safe As The Virus Evolves - LLS Podcast / CLL Society’s COVID-19 Update December 5th, 2022 / Dec 15 2022 end Antibody Study
The Bloodline with LLS has a new episode!
https://thebloodline.org/TBL/132e134/?c_src=email&c_src2=sfmc&utm_source=sfmc&utm_medium=email&utm_campaign=Podcast+Episode+Announcement+-+COVID+-+December2022&utm_term COVID: Staying Safe As The Virus Evolves Join us as we speak to Dr. Lee Greenberger
The Bloodline with LLS has a new episode!
https://thebloodline.org/TBL/132e134/?c_src=email&c_src2=sfmc&utm_source=sfmc&utm_medium=email&utm_campaign=Podcast+Episode+Announcement+-+COVID+-+December2022&utm_term COVID: Staying Safe As The Virus Evolves Join us as we speak to Dr. Lee Greenberger
lankisterguy
Volunteer
in
CLL Support
2 years ago
COVID update: Who remains at higher risk? by LLS.org
COVID update: Who remains at higher risk? https://www.lls.org/covid-19-resources Almost exactly three years ago on December 12, 2019, we received the first reports of a cluster of patients in China with symptoms of what turned out to be COVID-19. Vaccines and COVID-19 treatments have dramatically
COVID update: Who remains at higher risk? https://www.lls.org/covid-19-resources Almost exactly three years ago on December 12, 2019, we received the first reports of a cluster of patients in China with symptoms of what turned out to be COVID-19. Vaccines and COVID-19 treatments have dramatically
lankisterguy
Volunteer
in
CLL Support
2 years ago
Joining the Group
Hi, Folks. I am joining as a newly diagnosed SLL patient, currently under treatment with BTKi and Gazyva. So far, I have read through many posts and have been comforted by your experiences and ways of coping with our ongoing immunity issues. I honestly feel very confident that these new treatments
Hi, Folks. I am joining as a newly diagnosed SLL patient, currently under treatment with BTKi and Gazyva. So far, I have read through many posts and have been comforted by your experiences and ways of coping with our ongoing immunity issues. I honestly feel very confident that these new treatments
tleachhsv
in
CLL America Support
2 years ago
ATG treatment /Rabbit antigens
Hi as previously explained I am awaiting bone marrow transplant. Have been told I will need rabbit antigens or ATG ahead of the process. From what the consultant has said it can cause lots of side effects eg high temp amongst other things. Has anybody else had this treatment? Thanks Joanne
Hi as previously explained I am awaiting bone marrow transplant. Have been told I will need rabbit antigens or ATG ahead of the process. From what the consultant has said it can cause lots of side effects eg high temp amongst other things. Has anybody else had this treatment? Thanks Joanne
Platelets2022
in
Leukaemia Support
2 years ago
blood test bingo!
I've just been to Bristol stem cell department in preparation for a possible Stem cell transplant. I had to have 14 phials of blood taken for tests. Is this a record at one sitting? !!
I've just been to Bristol stem cell department in preparation for a possible Stem cell transplant. I had to have 14 phials of blood taken for tests. Is this a record at one sitting? !!
Scaredy_cat
in
MPN Voice
2 years ago
ET accelerated progression
hi. I have had ET since 2004, treated with varying doses of HU and in later years also Peg. Apart from unstable platelets I have been relatively symptom free. Until this year! I have definitely struggled with HU, getting terrible mouth sores. I had a bone marrow biopsy recently which has confirmed
hi. I have had ET since 2004, treated with varying doses of HU and in later years also Peg. Apart from unstable platelets I have been relatively symptom free. Until this year! I have definitely struggled with HU, getting terrible mouth sores. I had a bone marrow biopsy recently which has confirmed
Smdg
in
MPN Voice
2 years ago
Non driving gene mutation-ASXL1
I have MF with JAK2 V617F for 10 years, now is taking Ruxotinib and Interferon . Spleen contraction and blood control are good. Although I took a lot of hormones, at least my fibrosis degree has been reversed, and the mutation rate has also decreased a lot. But I was found I have a new bad prognosis
I have MF with JAK2 V617F for 10 years, now is taking Ruxotinib and Interferon . Spleen contraction and blood control are good. Although I took a lot of hormones, at least my fibrosis degree has been reversed, and the mutation rate has also decreased a lot. But I was found I have a new bad prognosis
merlisa
in
MPN Voice
2 years ago
Non driving gene mutation-ASXL1
I have MF with JAK2 V617F for 10 years, now is taking Ruxotinib and Interferon . Spleen contraction and blood control are good. Although I took a lot of hormones, at least my fibrosis degree has been reversed, and the mutation rate has also decreased a lot. But I was found I have a new bad prognosis
I have MF with JAK2 V617F for 10 years, now is taking Ruxotinib and Interferon . Spleen contraction and blood control are good. Although I took a lot of hormones, at least my fibrosis degree has been reversed, and the mutation rate has also decreased a lot. But I was found I have a new bad prognosis
merlisa
in
Fight MPN
2 years ago
Comparison can be good for the soul...
I do not often write on here but it seemed these musing may be of interest to others so here goes... ONE of the great advantages I find from attending the courses run by the Pulmonary Rehabilitation Service (PRS) is comparison. And after today's session I feel encouraged. Not that I am significantly
I do not often write on here but it seemed these musing may be of interest to others so here goes... ONE of the great advantages I find from attending the courses run by the Pulmonary Rehabilitation Service (PRS) is comparison. And after today's session I feel encouraged. Not that I am significantly
Timberman
in
COPD Friends
2 years ago
Visit with new Hem/Onc Dr went well!
Hi Friends, I had my first visit with my new local doctor. He is Associate Head of Stem Cell Transplant Dept with Ochsner in Louisiana. He does not treat any cancers other than blood. He listened and verbalized understanding that my previous Dr’s were not a fit for me. He reviewed my BMB from Vanderbilt
Hi Friends, I had my first visit with my new local doctor. He is Associate Head of Stem Cell Transplant Dept with Ochsner in Louisiana. He does not treat any cancers other than blood. He listened and verbalized understanding that my previous Dr’s were not a fit for me. He reviewed my BMB from Vanderbilt
Wewo01
in
MPN Voice
2 years ago
help with drinking 2 to 3 litres of water a day.
post allogeneic stem cell transplant I have been told I need to drink at least 2litres of water a day. With the medication I'm on I cannot drink plain water and have to flavour it and have with plenty of ice. Butstill find it difficult. Any advice on managing to get my full amount of water would be
post allogeneic stem cell transplant I have been told I need to drink at least 2litres of water a day. With the medication I'm on I cannot drink plain water and have to flavour it and have with plenty of ice. Butstill find it difficult. Any advice on managing to get my full amount of water would be
Kraskie1915
in
CLL Support
2 years ago
ET progression to MF - anxiety issues
My ET is now progressing to Post ET Myelofibrisis. My hemo has recommended I start on Ruxolitinib & also to be considered for a stem cell transplant. I know some of you have been in the same situation. Am I correct in thinking MF is life limiting? Also how have any of you coped on Rux? I feel very
My ET is now progressing to Post ET Myelofibrisis. My hemo has recommended I start on Ruxolitinib & also to be considered for a stem cell transplant. I know some of you have been in the same situation. Am I correct in thinking MF is life limiting? Also how have any of you coped on Rux? I feel very
SRH55
in
MPN Voice
2 years ago
Update and meeting the team.
I’ve had lost of tests done over the past few months. I met up the the transplant team. I’m looking at 5-10 years for a bone marrow transplant, they said it could be earlier, as I’m still working and I’m well enough they don’t want to do it to early. I will need to take year off work, (when the time
I’ve had lost of tests done over the past few months. I met up the the transplant team. I’m looking at 5-10 years for a bone marrow transplant, they said it could be earlier, as I’m still working and I’m well enough they don’t want to do it to early. I will need to take year off work, (when the time
wendycu
in
MPN Voice
2 years ago
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