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Side effects of Interferon
Eight months ago I started taking Ruxolitinib. Prior to that I was taking HU which made me quite ill. However Ruxolitinib is not working and rather than my platelets lowering they have gone up, were 600 now 987 and sometimes higher, also I have developed a serious skin cancer on my neck and leg. I
Eight months ago I started taking Ruxolitinib. Prior to that I was taking HU which made me quite ill. However Ruxolitinib is not working and rather than my platelets lowering they have gone up, were 600 now 987 and sometimes higher, also I have developed a serious skin cancer on my neck and leg. I
Heather270240
in
MPN Voice
2 years ago
46, Watch and Wait is over. Starting Acalibrutinib + Venetoclax - Anything I should look out for?
Hi everyone, first post for me. Diagnosed at 44, watch and wait for the last 2 years and now at 46 about to start my first treatment. Live in the Northeast US. Doc is signing me up for Acalibrutinib at the start and then working in Venetoclax slowly. Want to thank everyone on here for all of the
Hi everyone, first post for me. Diagnosed at 44, watch and wait for the last 2 years and now at 46 about to start my first treatment. Live in the Northeast US. Doc is signing me up for Acalibrutinib at the start and then working in Venetoclax slowly. Want to thank everyone on here for all of the
Flitzebogen
in
CLL Support
2 years ago
Phase 3, Trial of Interferon-α versus Hydroxyurea in Polycythemia Vera and Essential Thrombocythemia
Key Points Rates of thrombosis and progression were low in patients with ET/PV treated with either HU or IFN in this randomized study. PEG was more effective in normalizing counts and reducing JAK2V617F VAF in PV while HU induced more histopathologic responses in ET. https://ashpublications.org/blood
Key Points Rates of thrombosis and progression were low in patients with ET/PV treated with either HU or IFN in this randomized study. PEG was more effective in normalizing counts and reducing JAK2V617F VAF in PV while HU induced more histopathologic responses in ET. https://ashpublications.org/blood
Manouche
in
MPN Voice
2 years ago
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Statement from NHS digital acknowledging CLL error in PCR codes
“Since we last spoke we have become aware of an issue where, due to human error, a single code used to identify CLL was accidentally excluded. We worked with Blood Cancer UK to get the communication out to those affected yesterday and letters and PCR kits have been dispatched, please find our statement
“Since we last spoke we have become aware of an issue where, due to human error, a single code used to identify CLL was accidentally excluded. We worked with Blood Cancer UK to get the communication out to those affected yesterday and letters and PCR kits have been dispatched, please find our statement
Bartlet
in
CLL Support
2 years ago
CLL patient cured a decade after gene therapy
In 2010, doctors treated Doug Olson’s leukemia with an experimental gene therapy that transformed some of his blood cells into cancer killers. More than a decade later, there’s no sign of cancer in his body. The treatment cured Olson and a second patient, according to the University of Pennsylvania doctors
In 2010, doctors treated Doug Olson’s leukemia with an experimental gene therapy that transformed some of his blood cells into cancer killers. More than a decade later, there’s no sign of cancer in his body. The treatment cured Olson and a second patient, according to the University of Pennsylvania doctors
WinJ3
in
CLL Support
2 years ago
Blood cancer uk explain why some CLLers are finally getting priority PCR tests
❗📢 Recently, the NHS wrote to people who were eligible to be assessed for whether they qualify for new treatments if they contracted Covid. In England, these people were sent a priority PCR test 📞 But we heard from lots of people with blood cancer, on our support line and via a survey, who told
❗📢 Recently, the NHS wrote to people who were eligible to be assessed for whether they qualify for new treatments if they contracted Covid. In England, these people were sent a priority PCR test 📞 But we heard from lots of people with blood cancer, on our support line and via a survey, who told
Bartlet
in
CLL Support
2 years ago
can't get a letter for a priority PCR with CLL.
Tearing my hair out and getting nowhere trying to get myself a priority PCR! I am starting to feel forgotten and about by both my CNS and surgery. I have CLL on W&W. The surgery said I just need to ring 119. They will not help unless I have a letter. The CNS said noone has asked her for a letter before
Tearing my hair out and getting nowhere trying to get myself a priority PCR! I am starting to feel forgotten and about by both my CNS and surgery. I have CLL on W&W. The surgery said I just need to ring 119. They will not help unless I have a letter. The CNS said noone has asked her for a letter before
CrazyDaisy68
in
CLL Support
2 years ago
Chlorinated water protective for CLL?
Wow, surprising. Just found out my water filter hadn't been working and I've been drinking different levels of chlorinated for ? years. So just quickly googled, wondering if that explained my diagnosis 2019. But no! Maybe I should turn off my filter and put Britta aside as well --
Wow, surprising. Just found out my water filter hadn't been working and I've been drinking different levels of chlorinated for ? years. So just quickly googled, wondering if that explained my diagnosis 2019. But no! Maybe I should turn off my filter and put Britta aside as well --
Vlaminck
in
CLL Support
2 years ago
Evidence omicron risk is higher for blood cancer patients
after two vaccine doses, neutralising antibodies against omicron was detectable in 19% patients against delta was detetable in 39% against original SARS-CoV-2 in 89% patients (p<0.0001). After third vaccine dose, against omicron was 56% against delta 71% and original 86%. CLL patients may
after two vaccine doses, neutralising antibodies against omicron was detectable in 19% patients against delta was detetable in 39% against original SARS-CoV-2 in 89% patients (p<0.0001). After third vaccine dose, against omicron was 56% against delta 71% and original 86%. CLL patients may
Bartlet
in
CLL Support
2 years ago
Clinical trials for Richter's transformation
Hello. I would like to ask if you know of any current clinical trials for patients with Richter's Transformation who have already reached the Car-T and it did not work for them. We have in our group a very young 22-year-old boy whose Car-Ts didn't work for him in the UK. They have told him that they
Hello. I would like to ask if you know of any current clinical trials for patients with Richter's Transformation who have already reached the Car-T and it did not work for them. We have in our group a very young 22-year-old boy whose Car-Ts didn't work for him in the UK. They have told him that they
Priss69
in
CLL Support
2 years ago
Metformin and Ruxolitinib for PV?
Hello, Happy New Year (almost) to everyone. Maybe 2022 bring us all a good year of health and happiness. Has anyone researched using Metformin and Ruxolitinib for Polycythemia Vera? Or spoken to a doctor about it? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5833553/ Listening to longevity expert
Hello, Happy New Year (almost) to everyone. Maybe 2022 bring us all a good year of health and happiness. Has anyone researched using Metformin and Ruxolitinib for Polycythemia Vera? Or spoken to a doctor about it? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5833553/ Listening to longevity expert
Elizka
in
MPN Voice
2 years ago
DOES IVERMECTIN SLOW CLL
I previously posted that my absolute lymphocyte count was steadily growing then after I had both vaccinations my counts rose 50% in a few months. I later got covid and took ivermectin for a few days and my lymphocyte count went down from 30k to about 26.5k. I thought maybe a coincidence. Doing some
I previously posted that my absolute lymphocyte count was steadily growing then after I had both vaccinations my counts rose 50% in a few months. I later got covid and took ivermectin for a few days and my lymphocyte count went down from 30k to about 26.5k. I thought maybe a coincidence. Doing some
mleo123
in
CLL Support
2 years ago
This is not good enough !!!
Ronapreve, Monupiravir, Sotrovimab, only for some - and only when infected? This does not sound like protecting the immunocompromised - more like shutting the stable door for some and leaving it wide open for others. (These new treatments are not approved in the UK forCML, CMML, MPNs (PV, ET, myelofibrosis
Ronapreve, Monupiravir, Sotrovimab, only for some - and only when infected? This does not sound like protecting the immunocompromised - more like shutting the stable door for some and leaving it wide open for others. (These new treatments are not approved in the UK forCML, CMML, MPNs (PV, ET, myelofibrosis
Hidden
in
MPN Voice
2 years ago
Anti vaccination
I now have post Myelofibrosis AML. I’m worried about relatives who are anti vaccinations. I should keep away from them??
I now have post Myelofibrosis AML. I’m worried about relatives who are anti vaccinations. I should keep away from them??
Mysi
in
MPN Voice
2 years ago
Update and thank you for your support
I would like to thank everyone who replied to my post about the doubts my haematologist raised about my SCT. The wisdom and support here really does make a difference in helping me cope at this frightening and stressful time. I have now had two conversations with my wonderful transplant nurse, who was
I would like to thank everyone who replied to my post about the doubts my haematologist raised about my SCT. The wisdom and support here really does make a difference in helping me cope at this frightening and stressful time. I have now had two conversations with my wonderful transplant nurse, who was
Otterfield
in
MPN Voice
2 years ago
Priority PCR test and SNOMED coding
Thank you for all your replies and empathy. my GP surgery is lovely but they don’t understand the coding! Etc But I will keep trying! I don’t have a nurse specialist and my consultant does not reply to my emails or respond to any telephone messages.Blood cancer UK have been very helpful and they are
Thank you for all your replies and empathy. my GP surgery is lovely but they don’t understand the coding! Etc But I will keep trying! I don’t have a nurse specialist and my consultant does not reply to my emails or respond to any telephone messages.Blood cancer UK have been very helpful and they are
Greencyclist
in
CLL Support
2 years ago
Uk What is the exact SNOMED code for CLL to get priority PCR test kit and letter?
In the continuing saga of trying to get a priority PCR test and letter does anybody know the exact SNOMED code For CLL that has to be on your medical records in the UK for you to get a priority PCR test and letter from NHS England? I am going round and round in circles being pushed from 119 back to
In the continuing saga of trying to get a priority PCR test and letter does anybody know the exact SNOMED code For CLL that has to be on your medical records in the UK for you to get a priority PCR test and letter from NHS England? I am going round and round in circles being pushed from 119 back to
Greencyclist
in
CLL Support
2 years ago
Accessing new treatments against COVID19 and priority PCR home test kits
Blood Cancer UK have sent me a survey "With an increase in Omicron cases, we know it's an understandably worrying time for people with blood cancer. That's why we've launched a new survey about blood cancer and vaccines, access to new treatments, and employment" I cannot direct you to this with a direct
Blood Cancer UK have sent me a survey "With an increase in Omicron cases, we know it's an understandably worrying time for people with blood cancer. That's why we've launched a new survey about blood cancer and vaccines, access to new treatments, and employment" I cannot direct you to this with a direct
Sumoldbloke
in
CLL Support
2 years ago
Cancer again
Has anyone gotten a secondary cancer while on W & W ? I had breast cancer two years ago and had a lumpectomy with no chemo or radiation. My cancer is now back in same breast. Thinking of a mastectomy this time but still concerned that the CLL might be an underlying cause. Any comments would be very
Has anyone gotten a secondary cancer while on W & W ? I had breast cancer two years ago and had a lumpectomy with no chemo or radiation. My cancer is now back in same breast. Thinking of a mastectomy this time but still concerned that the CLL might be an underlying cause. Any comments would be very
1962jns
in
CLL Support
2 years ago
Hija
We’ll I am on hydroxycarbamide, same thing , because I have Polycythemia Vera , also diagnosed in 2018, also very rare. I t belongs to the same group of blood cancer. I still get itchy skin, fatigue , feeling hot at night and have developed a fatty liver. I have done well on my meds overall. If you
We’ll I am on hydroxycarbamide, same thing , because I have Polycythemia Vera , also diagnosed in 2018, also very rare. I t belongs to the same group of blood cancer. I still get itchy skin, fatigue , feeling hot at night and have developed a fatty liver. I have done well on my meds overall. If you
Triergirl55
in
MPN Voice
2 years ago
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