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brukinsa cll patient
cll patient that has been on brukinsa for six weeks and with wbc count of 30.3 and lymphocyte absolute count of 27.6 should i be concerned.
cll patient that has been on brukinsa for six weeks and with wbc count of 30.3 and lymphocyte absolute count of 27.6 should i be concerned.
ceciljr1958
in
CLL Support
3 months ago
atypical CLL treatment
Hi I am Rik, 63 yrs old,female, living in the Netherlands. I was dx with CLL dec 2020. Since 2014 increased lymphocytes, never followed up. Still W and W. But spleen is enlarging, fatigue increases, as condition gets a bit less. I am wondering if there are treatment experiences for atypical CLL ( cd5
Hi I am Rik, 63 yrs old,female, living in the Netherlands. I was dx with CLL dec 2020. Since 2014 increased lymphocytes, never followed up. Still W and W. But spleen is enlarging, fatigue increases, as condition gets a bit less. I am wondering if there are treatment experiences for atypical CLL ( cd5
Pinguin2024
in
CLL Support
3 months ago
Modbury123
Hello this is the first time I have submitted a request maybe you can help me solve this please . I have ET plus JAK2 I take 500gm Hydroxycarbamide plus Aspirin. On my GP Patient Access under conditions Essential Thrombocythemia is shown I mentioned to the GP should it not also say + JAK2 .He came
Hello this is the first time I have submitted a request maybe you can help me solve this please . I have ET plus JAK2 I take 500gm Hydroxycarbamide plus Aspirin. On my GP Patient Access under conditions Essential Thrombocythemia is shown I mentioned to the GP should it not also say + JAK2 .He came
Modbury123
in
MPN Voice
8 months ago
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Subsequent to previous posts
Went back to GP again today after previous visit about clubbed fingers and breathing trouble. Booked an urgent blood test and need to provide samples then I will get a scan to check for cancer. I don't know how I feel about this tbh, wanted him to tell me it was all in my head and for that to be true
Went back to GP again today after previous visit about clubbed fingers and breathing trouble. Booked an urgent blood test and need to provide samples then I will get a scan to check for cancer. I don't know how I feel about this tbh, wanted him to tell me it was all in my head and for that to be true
JHutton1994
in
Lung Conditions Community Forum
8 months ago
Too Much Testing??
There has been numerous posts on Health Unlocked this week from younger, newly diagnosed CLL patients. There seems to be two type of people asking questions. People who don’t have access to a CLL specialist who are confused about next steps. And newly diagnosed, anxious people like me who have CLL specialists
There has been numerous posts on Health Unlocked this week from younger, newly diagnosed CLL patients. There seems to be two type of people asking questions. People who don’t have access to a CLL specialist who are confused about next steps. And newly diagnosed, anxious people like me who have CLL specialists
Hidden
in
CLL Support
4 months ago
CLL survival times ARE improving, thanks to BTK and BCL-2 inhibitors
Many of us were shocked after our CLL/SLL diagnosis when we googled for survival times. [u]Hopefully[/u] we subsequently read that search engine information from Google, Bing, etc., is way out of date, due to the fact that with CLL being a chronic disease, the relatively long survival times with this
Many of us were shocked after our CLL/SLL diagnosis when we googled for survival times. [u]Hopefully[/u] we subsequently read that search engine information from Google, Bing, etc., is way out of date, due to the fact that with CLL being a chronic disease, the relatively long survival times with this
AussieNeil
Partner
in
CLL Support
4 months ago
sudden purple mark over eye
hi - background is that I’m being watched for slightly elevated platelets and wbc but I’ve tested neg for gene mutations and had a normal bmb several years ago, so no diagnosis and hematologists so far have not felt there’s an Mpn or other issue. Today, of the blue a purplish mark about 3/4 in by
hi - background is that I’m being watched for slightly elevated platelets and wbc but I’ve tested neg for gene mutations and had a normal bmb several years ago, so no diagnosis and hematologists so far have not felt there’s an Mpn or other issue. Today, of the blue a purplish mark about 3/4 in by
Labbymom
in
MPN Voice
8 months ago
Ruxolitinib and skin cancers
Hi. I’ve just seen that ruxolitinib has now been approved for PV, which is great, BUT do take care of sun exposed skin. Rux can trigger really nasty sarcomatoid squamous cell cancers , as it did for me, and having an aggressive dermatological condition to deal with (2 excisions, I false alarm excision
Hi. I’ve just seen that ruxolitinib has now been approved for PV, which is great, BUT do take care of sun exposed skin. Rux can trigger really nasty sarcomatoid squamous cell cancers , as it did for me, and having an aggressive dermatological condition to deal with (2 excisions, I false alarm excision
Gipsy123
in
MPN Voice
8 months ago
uMRD 6
I have been living for the one year point on V plus O to get the clonal sequence uMRD6 bone marrow test done so I could decide if I wanted to continue with a Venetaclax. Technically, I consider myself partially treated rather than relapsed or refractory, because I only received three of the six cycles
I have been living for the one year point on V plus O to get the clonal sequence uMRD6 bone marrow test done so I could decide if I wanted to continue with a Venetaclax. Technically, I consider myself partially treated rather than relapsed or refractory, because I only received three of the six cycles
skipro
in
CLL Support
4 months ago
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
4 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
4 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
4 months ago
Infections with Ruxolitinib
Just wondering how many of you have had lowered immunity from Rux. On the positive side, my spleen had been greatly enlarged, and Rux took it down very quickly. But not too long afterwards I found myself getting slightly feverish and very weak. Long story short, I ended up with pneumonia. Just starting
Just wondering how many of you have had lowered immunity from Rux. On the positive side, my spleen had been greatly enlarged, and Rux took it down very quickly. But not too long afterwards I found myself getting slightly feverish and very weak. Long story short, I ended up with pneumonia. Just starting
Orangeboykitty
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
life insurance whilst waiting for official diagnosis
hi all, I have recently tested positive to the jak2 mutation… my consultant thinks it may be ET or myelofibrosis . I am having a bone marrow biopsy done to determine which one it is. My question is… is it too late for me to get life insurance? Any help would be greatly appreciated.
hi all, I have recently tested positive to the jak2 mutation… my consultant thinks it may be ET or myelofibrosis . I am having a bone marrow biopsy done to determine which one it is. My question is… is it too late for me to get life insurance? Any help would be greatly appreciated.
Newbie16
in
MPN Voice
8 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
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
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
9 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
5 months ago
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