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Background
I appreciate the interest in knowing more of my "back story" and my CLL "markers" history. What bothers me is a bias toward the pharmaceutical approach to treating CLL that is characterized as the "best" approach despite failed and incompetent pharmaceutical interventions, highlighted in the incompentently
I appreciate the interest in knowing more of my "back story" and my CLL "markers" history. What bothers me is a bias toward the pharmaceutical approach to treating CLL that is characterized as the "best" approach despite failed and incompetent pharmaceutical interventions, highlighted in the incompentently
leftysfsl1945
in
CLL Support
3 months ago
Lefty
I earned a degree in Electrical Engineering from the University of California, Berkeley. Worked in Silicon Valley for several years and managed to join a start up company prior to it going public that was very successful. During 2015 I started seeing a Naturopathic doctor and became impressed with
I earned a degree in Electrical Engineering from the University of California, Berkeley. Worked in Silicon Valley for several years and managed to join a start up company prior to it going public that was very successful. During 2015 I started seeing a Naturopathic doctor and became impressed with
leftysfsl1945
in
CLL Support
3 months ago
first line treatment with bendamustin and rithoximab
I had 6 month first line treatment with bendamustin and rithoximab in 2022 september ended. .when i start my treatment my numbers was very high wbc 146 rbc was low in 2022 janeuary the numbers was wbc126 rbc 3.23 hgb 10.9 plt 135 LDh 920. because of high in ldh one of recent doctor said may be
I had 6 month first line treatment with bendamustin and rithoximab in 2022 september ended. .when i start my treatment my numbers was very high wbc 146 rbc was low in 2022 janeuary the numbers was wbc126 rbc 3.23 hgb 10.9 plt 135 LDh 920. because of high in ldh one of recent doctor said may be
09123836306
in
CLL Support
3 months ago
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Travel Insurance
This is the first time I have posted on here although I read it daily. Has anyone experienced the following or can offer any advice regarding it. I was originally diagnosed in May 2021 with ET - CALR and at that time was covered by my partner's travel insurance. In March 2023 my diagnosis was changed
This is the first time I have posted on here although I read it daily. Has anyone experienced the following or can offer any advice regarding it. I was originally diagnosed in May 2021 with ET - CALR and at that time was covered by my partner's travel insurance. In March 2023 my diagnosis was changed
NannaFlo
in
MPN Voice
8 months ago
Newly diagnosed
So I have had chronic lymphatic
leukaemia
for 6 years and recently diagnosed with prostate cancer.Father died from it and brother also has just had his prostate removed. .I’ve scored3/3 on Gleason, MRI showed a small area of shadow from which they took 17 and 2 active from that.
So I have had chronic lymphatic
leukaemia
for 6 years and recently diagnosed with prostate cancer.Father died from it and brother also has just had his prostate removed. .I’ve scored3/3 on Gleason, MRI showed a small area of shadow from which they took 17 and 2 active from that.
Stacky66
in
Prostate Cancer Network
10 months ago
Ruxolitinib & raised cholesterol
I have been on Ruxolitinib for nearly 9 years now managing my primary myelofibrosis. I have been advised today that I now have a very high cholesterol level of 9.4. We went through my family history and diet but it seems that Rux seems to be the main contributory factor. The sheet does say this is
I have been on Ruxolitinib for nearly 9 years now managing my primary myelofibrosis. I have been advised today that I now have a very high cholesterol level of 9.4. We went through my family history and diet but it seems that Rux seems to be the main contributory factor. The sheet does say this is
Cazbolac
in
MPN Voice
8 months ago
Unprecedented Case: Myelofibrosis Reverts to Polycythemia Vera Phenotype
»In a rare and unprecedented case, a 72-year-old man diagnosed with JAK2V617F mutated polycythemia vera (PV) experienced a transformation to myelofibrosis (MF) but later reverted to a PV phenotype. The study was presented at the International Congress of Myeloproliferative Neoplasms held November 2-
»In a rare and unprecedented case, a 72-year-old man diagnosed with JAK2V617F mutated polycythemia vera (PV) experienced a transformation to myelofibrosis (MF) but later reverted to a PV phenotype. The study was presented at the International Congress of Myeloproliferative Neoplasms held November 2-
Manouche
in
MPN Voice
8 months ago
Antiinflammatory medications with Jakafi
I've read that there is a moderate risk of bleeding after using ibuprofen with Jakafi. I'd appreciate hearing reactions from people on Jakafi who have taken ibuprofen and other anti-inflammatory medications. Which anti-inflammatory medications would minimize the risk of such interactions? Thanks, Steve
I've read that there is a moderate risk of bleeding after using ibuprofen with Jakafi. I'd appreciate hearing reactions from people on Jakafi who have taken ibuprofen and other anti-inflammatory medications. Which anti-inflammatory medications would minimize the risk of such interactions? Thanks, Steve
sbs_patient
in
MPN Voice
8 months ago
Understanding PET Scan Results with CLL
Hello! I was diagnosed with CLL (11Q) in 2013. On Ibrutinib since 2015 and have very thankfully done very well with basically zero problems. CT scans have showed some mild increase in nodes over the last several years. Doctor ordered a PET Scan. I have the results. What would indicated Richter's
Hello! I was diagnosed with CLL (11Q) in 2013. On Ibrutinib since 2015 and have very thankfully done very well with basically zero problems. CT scans have showed some mild increase in nodes over the last several years. Doctor ordered a PET Scan. I have the results. What would indicated Richter's
FlaKeys
in
CLL Support
4 months ago
Detected with CLL
Hi , i was detected with cll in march 2021 at that time my wbc was 30k but with no symptoms so i was on wait and watch,after few months i got brain hamerroage and i was in hospital for 1 month after that i recovered but still my left side is weak , my wbc increased gradually and after 3 years it has
Hi , i was detected with cll in march 2021 at that time my wbc was 30k but with no symptoms so i was on wait and watch,after few months i got brain hamerroage and i was in hospital for 1 month after that i recovered but still my left side is weak , my wbc increased gradually and after 3 years it has
Kkkaaarrr
in
CLL Support
4 months ago
New MF drugs in development by Incye
Hi All, just as a quick update, Incyte has started the phase 1 trial for the CALR anyibody and they also disclosed a new potential treatment for the JAK mutation which may enter clinicial trials in the coming months which they say could also be disease modifying. See some quotes from their 3Q 2023
Hi All, just as a quick update, Incyte has started the phase 1 trial for the CALR anyibody and they also disclosed a new potential treatment for the JAK mutation which may enter clinicial trials in the coming months which they say could also be disease modifying. See some quotes from their 3Q 2023
CanadaG
in
MPN Voice
8 months ago
Engaging Conversations: Chats with MPN Specialists
»Embark on a journey of enlightening dialogues surrounding Myeloproliferative Neoplasms (MPNs) with the distinguished specialists in the field. These live chats offer a unique opportunity to delve into the intricacies of Polycythemia Vera (PV) and Essential Thrombocythemia (ET) with the expertise of
»Embark on a journey of enlightening dialogues surrounding Myeloproliferative Neoplasms (MPNs) with the distinguished specialists in the field. These live chats offer a unique opportunity to delve into the intricacies of Polycythemia Vera (PV) and Essential Thrombocythemia (ET) with the expertise of
Manouche
in
MPN Voice
8 months ago
Quercetin
I am taking Vimerson Health's Tumeric/Quercetin/Bromelain combination. Presently only taking the recommended two capsules per day in the morning. Been on Watch and Wait since 2019. White count is slowly creeping up (now at 30.8 - a year ago I was at 20.9). Other numbers Lymphs at #25, MCV at 96.9
I am taking Vimerson Health's Tumeric/Quercetin/Bromelain combination. Presently only taking the recommended two capsules per day in the morning. Been on Watch and Wait since 2019. White count is slowly creeping up (now at 30.8 - a year ago I was at 20.9). Other numbers Lymphs at #25, MCV at 96.9
CBME
in
CLL Support
4 months ago
The 2024 Global Patient Survey invites CLL patients and caregivers to share their experiences
Every two years, the Lymphoma Coalition, a worldwide network of patient groups with a full or partial focus on providing support to lymphoma patients, including those with CLL, undertakes a
Global Patient Survey
. The 2024 survey gives you
an opportunity to share your experience with CLL
Every two years, the Lymphoma Coalition, a worldwide network of patient groups with a full or partial focus on providing support to lymphoma patients, including those with CLL, undertakes a
Global Patient Survey
. The 2024 survey gives you
an opportunity to share your experience with CLL
CLLerinOz
Administrator
in
CLL Support
4 months ago
Metformin Use and the Risk of Myeloproliferative Neoplasms in a Danish Population Based Cohort
I am very curious if any MPNérs are using Metaformin and what effects they are experiencing on their MPN... See: In this study we found an inverse association between MT use and risk of MPNs indicating a potential protective effect of MT on the development of MPNs. The protective effect was most pronounced
I am very curious if any MPNérs are using Metaformin and what effects they are experiencing on their MPN... See: In this study we found an inverse association between MT use and risk of MPNs indicating a potential protective effect of MT on the development of MPNs. The protective effect was most pronounced
pvdm
in
MPN Voice
8 months ago
watch and wait.
Hi all, I haven’t posted in a while. I am after some thoughts on results really.. I am based in the UK. Diagnosed in Oct 2022 after a chance blood test for something else. A familiar story from what I have read. A specialist at the time said I was a bit early for the disease! I’m now nearly 50. I
Hi all, I haven’t posted in a while. I am after some thoughts on results really.. I am based in the UK. Diagnosed in Oct 2022 after a chance blood test for something else. A familiar story from what I have read. A specialist at the time said I was a bit early for the disease! I’m now nearly 50. I
T7374
in
CLL Support
4 months ago
Beta 2 Microglobulin
Hi. I'm considering getting a Beta 2 Microglobulin blood test done. I have CLL and on W&W. Has anyone else had this done?
Hi. I'm considering getting a Beta 2 Microglobulin blood test done. I have CLL and on W&W. Has anyone else had this done?
ColSte
in
CLL Support
5 months ago
Bone pain
morning all does anyone else get really uncomfortable bone pain with ET I have for years had pain in thigh and upper arm bones sometimes so sore. My discomfort now is in pelvic bones especially the bones I sit on . I think the ischial tuberosity… ? Any one else
morning all does anyone else get really uncomfortable bone pain with ET I have for years had pain in thigh and upper arm bones sometimes so sore. My discomfort now is in pelvic bones especially the bones I sit on . I think the ischial tuberosity… ? Any one else
Tipsy2023
in
MPN Voice
8 months ago
Ruxolitinib not working so well
I was diagnosed with Myelofibrosis Stage 2 this summer. I was put on Ruxolitinib and at first it worked very well but now my platelets have shot up to 609 when all other counts are down in my boots!! The CRP is below 1mg so it is not likely an infection has caused this sudden increase in the platelet
I was diagnosed with Myelofibrosis Stage 2 this summer. I was put on Ruxolitinib and at first it worked very well but now my platelets have shot up to 609 when all other counts are down in my boots!! The CRP is below 1mg so it is not likely an infection has caused this sudden increase in the platelet
Searcher56
in
MPN Voice
8 months ago
Generic version of Jakafi for PV ?
Expiry of Jakafi (Rux ) Patent # 7,598,257 (Incyte) Patent expiration date is : 24th December 2027 Patent use: FOR TREATMENT OF POLYCYTHEMIA VERA (PV) IN PATIENTS WHO HAVE HAD AN INADEQUATE RESPONSE TO OR ARE INTOLERANT OF HYDROXYUREA Thus we can hope that a generic appears around that time for
Expiry of Jakafi (Rux ) Patent # 7,598,257 (Incyte) Patent expiration date is : 24th December 2027 Patent use: FOR TREATMENT OF POLYCYTHEMIA VERA (PV) IN PATIENTS WHO HAVE HAD AN INADEQUATE RESPONSE TO OR ARE INTOLERANT OF HYDROXYUREA Thus we can hope that a generic appears around that time for
Innessant
in
MPN Voice
8 months ago
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