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ALCALABRUTINIB FAILING
Why are clinical trials our only option for the most part, why does our treatments cause more mutations and a cancer that is harder to treat, at some point, our cancer will outpace our options, and we will have none. We must be very intelligent on our line of treatments and make sure each we choose wisely
Why are clinical trials our only option for the most part, why does our treatments cause more mutations and a cancer that is harder to treat, at some point, our cancer will outpace our options, and we will have none. We must be very intelligent on our line of treatments and make sure each we choose wisely
CAM729
in
CLL Support
2 years ago
tocilizumab after relapse
Hi having felt unwell again and 8 weeks of steroids, reducing to zero I have had a positive ct pet scan again. Now back on steroids and a plan to commence lufludomine while consultant tries to get tocilizumab again. Has anyone had any luck with getting further scripts after relapse. Grateful for any
Hi having felt unwell again and 8 weeks of steroids, reducing to zero I have had a positive ct pet scan again. Now back on steroids and a plan to commence lufludomine while consultant tries to get tocilizumab again. Has anyone had any luck with getting further scripts after relapse. Grateful for any
Devoid
in
PMRGCAuk
2 years ago
rituxan treatment
My CLL has caused a condition called warm autoimmune hemolytic anemia and they are wanting to start Rituximab to keep my hgb counts from tanking. I am not a big fan of treatments and have refused treatments several times for other cancers. I am just wondering about your alls experience with this
My CLL has caused a condition called warm autoimmune hemolytic anemia and they are wanting to start Rituximab to keep my hgb counts from tanking. I am not a big fan of treatments and have refused treatments several times for other cancers. I am just wondering about your alls experience with this
Bluegillking
in
CLL Support
2 years ago
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Optical genome mapping: a promising new tool to assess genomic complexity in CLL
In CLL, cytogenetic testing relies on a few well-established techniques https://powerfulpatients.org/2019/10/28/cll-genetic-tests-explained/ while the new method of optical genome mapping (OGM) remains strictly experimental. Preliminary research, though, does suggest that OGM can enhance cytogenomic
In CLL, cytogenetic testing relies on a few well-established techniques https://powerfulpatients.org/2019/10/28/cll-genetic-tests-explained/ while the new method of optical genome mapping (OGM) remains strictly experimental. Preliminary research, though, does suggest that OGM can enhance cytogenomic
bennevisplace
in
CLL Support
2 years ago
Request - Real time experience Reco for the best haematologists in Portugal please
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 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 the names of hospitals or institutes focusing on Hematology
Iwillwin123
in
PMRGCAuk
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
Anyone out there living with Polycythaemia Rubra Vera + Multiple Myeloma?
Does anybody out there have more My friend has PRV and MM which appear to be unrelated. Polycythaemia Rubra Vera since c2005 (well-controlled with Hydrea) Multiple Myeloma (more specifically: Multiple Plasmacytoma) diagnosed 2018/2019. PRV remains in remission but MM relapsed some months ago.
Does anybody out there have more My friend has PRV and MM which appear to be unrelated. Polycythaemia Rubra Vera since c2005 (well-controlled with Hydrea) Multiple Myeloma (more specifically: Multiple Plasmacytoma) diagnosed 2018/2019. PRV remains in remission but MM relapsed some months ago.
SolasChoir
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
Covid Vax Long Term T-cell Immunity
I posted this in a thread, but it seems worth a top post with recent info as there are many discussions on the vaxes, immunity and boosters. "Acquired Immunity" occurs by vax or infection. A large portion of the world has acquired immunity and likely T-cell protection. We saw last Spring in Hong
I posted this in a thread, but it seems worth a top post with recent info as there are many discussions on the vaxes, immunity and boosters. "Acquired Immunity" occurs by vax or infection. A large portion of the world has acquired immunity and likely T-cell protection. We saw last Spring in Hong
EPguy
in
MPN Voice
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
Dr Mesa on MF prognostics, Rux and SCT
Some detailed info in Dr Mesa's thoughts in a 2020 interview I came across: -For some MF patients Rux is working well and long term: <<There are patients from the phase 1 study of ruxolitinib [i](this dates to early as 2007) [/i]at our centers that are still on the therapy. These are individuals that
Some detailed info in Dr Mesa's thoughts in a 2020 interview I came across: -For some MF patients Rux is working well and long term: <<There are patients from the phase 1 study of ruxolitinib [i](this dates to early as 2007) [/i]at our centers that are still on the therapy. These are individuals that
EPguy
in
MPN Voice
2 years ago
LET’S GET READY FOR WORLD CLL DAY ON 1 SEPTEMBER!
WORLD CLL DAY 2022 is only a few weeks away!
Every 1 September, the global CLL community unites to raise awareness about chronic lymphocytic leukemia and give those affected by a diagnosis of CLL a much needed voice. On World CLL Day we come together to improve understanding of the vulnerability
WORLD CLL DAY 2022 is only a few weeks away!
Every 1 September, the global CLL community unites to raise awareness about chronic lymphocytic leukemia and give those affected by a diagnosis of CLL a much needed voice. On World CLL Day we come together to improve understanding of the vulnerability
HAIRBEAR_UK
Founder Admin
in
CLL Support
2 years ago
has anybody had blood test results with 35% elevated urea level?
has anybody had blood test results with 35% elevated urea level and the doctors said to ignore it. The Creatinine & EGFR that matters. thank you for sharing your thoughts. Kind regards.
has anybody had blood test results with 35% elevated urea level and the doctors said to ignore it. The Creatinine & EGFR that matters. thank you for sharing your thoughts. Kind regards.
catherine1712
in
LUPUS UK
2 years ago
PI3K inhibitors (idelalisib,copanlisib, duvelisib, parsaclisib, umbralisib, zandelisib, ACP-319) in CLL: where do we go from here?
While we have never been as spoiled for treatment choice as we are now, PI3K inhibitor safety is being very closely monitored by the FDA. So, it's timely that Sigrid S Skanland and Jennifer R Brown have written a peer-reviewed Haematologica early view paper that discusses [i]"the current status of
While we have never been as spoiled for treatment choice as we are now, PI3K inhibitor safety is being very closely monitored by the FDA. So, it's timely that Sigrid S Skanland and Jennifer R Brown have written a peer-reviewed Haematologica early view paper that discusses [i]"the current status of
CLLerinOz
Administrator
in
CLL Support
2 years ago
A randomized phase 3 trial of interferon-α vs hydroxyurea in polycythemia vera and essential thrombocythemia
Hello The paper below recently came out in May. I thought member would be interested. Apologies if this is old news. “A randomized phase 3 trial of interferon-α vs hydroxyurea in polycythemia vera and essential thrombocythemia” It is freely downloadable from PubMed at https://pubmed.ncbi.nlm.nih.gov
Hello The paper below recently came out in May. I thought member would be interested. Apologies if this is old news. “A randomized phase 3 trial of interferon-α vs hydroxyurea in polycythemia vera and essential thrombocythemia” It is freely downloadable from PubMed at https://pubmed.ncbi.nlm.nih.gov
LongETinUS
in
MPN Voice
2 years ago
will these hot flashes ever end ?
Hi all I am grateful that after 19 months since i developed pmr symptoms I am feeling a lot better and have gradually reduced over the months from 30 mg (think gp went a bit over the top with that dose because i was on 25 and when i reported some blurred vision and headache she upped it . I saw optician
Hi all I am grateful that after 19 months since i developed pmr symptoms I am feeling a lot better and have gradually reduced over the months from 30 mg (think gp went a bit over the top with that dose because i was on 25 and when i reported some blurred vision and headache she upped it . I saw optician
Mofred
in
PMRGCAuk
2 years ago
Stem Cell Transplant-update
Well, I have been below the radar lately but it’s time to update you all. I was diagnosed moth PMF in April 2020 and declined quite quickly. I have CALR with ASXL1 mutation. I went through rapidly increasing dose of Peg INF but moved over to Ruxolitinib when my platelet count dropped. The rux helped
Well, I have been below the radar lately but it’s time to update you all. I was diagnosed moth PMF in April 2020 and declined quite quickly. I have CALR with ASXL1 mutation. I went through rapidly increasing dose of Peg INF but moved over to Ruxolitinib when my platelet count dropped. The rux helped
ConniesDad
in
MPN Voice
2 years ago
Newly diagnosed Et Edinburgh
Hi is anyone from Edinburgh that has been diagnosed with Essential Thrombocythaemia Calr mutation?
Hi is anyone from Edinburgh that has been diagnosed with Essential Thrombocythaemia Calr mutation?
Green1988
in
MPN Voice
2 years ago
starting W&W
So I recently had two visits at the Mayo Clinic and had genetic testing along with ct scans. I’m “normal” karyotype, unmutated igh, unmutated tp53. I’m being transferred from my hematologist to a Cll specialist and in general…I feel pretty lucky. One thing my doc said though was that I was likely to
So I recently had two visits at the Mayo Clinic and had genetic testing along with ct scans. I’m “normal” karyotype, unmutated igh, unmutated tp53. I’m being transferred from my hematologist to a Cll specialist and in general…I feel pretty lucky. One thing my doc said though was that I was likely to
Snakejaw
in
CLL Support
2 years ago
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