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Update from my Appointment
Hi All, I want to thank everyone for the kind words of support, good thoughts, and prayers for my appointment with a new specialist yesterday. I appreciate it so much. Here’s what I learned: 1.I liked the team a great deal. Everyone was very kind, really listened to me, and had excellent information
Hi All, I want to thank everyone for the kind words of support, good thoughts, and prayers for my appointment with a new specialist yesterday. I appreciate it so much. Here’s what I learned: 1.I liked the team a great deal. Everyone was very kind, really listened to me, and had excellent information
Moonmyst
in
CLL Support
4 years ago
ET
hi 41 years old ive had ET since 2016 but only found out when had my bloods done march 2020 when I got diagnosed my platelets count been down up last few months was on 497 then 596 then 679 now back down to 597 am tested for jak2 take 75mg asprin a day to live a,healthy lifestyle and a diet a have
hi 41 years old ive had ET since 2016 but only found out when had my bloods done march 2020 when I got diagnosed my platelets count been down up last few months was on 497 then 596 then 679 now back down to 597 am tested for jak2 take 75mg asprin a day to live a,healthy lifestyle and a diet a have
Jody00
in
MPN Voice
4 years ago
Vitamins for CLL
I've always been a firm believer that God provides a means in the natural world to help heal ourselves mentally and physically. Along with my chemotherapy medication Imbruvica, I'm also taking a combination of Vitamin C, E, and green tea supplements. What other natural occurring vitamins have been
I've always been a firm believer that God provides a means in the natural world to help heal ourselves mentally and physically. Along with my chemotherapy medication Imbruvica, I'm also taking a combination of Vitamin C, E, and green tea supplements. What other natural occurring vitamins have been
PJWheeler
in
CLL Support
4 years ago
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Dual Vaccine Trial in Myeloproliferative Neoplasms
Brief Summary: « A phase I-II study in patients with mutated MPN by vaccinating with PD-L1 and Aginase1 peptides with Montanide ISA-51 as adjuvant, to monitor the immunological response to vaccination and subsequently safety, toxicity and clinical effect » https://clinicaltrials.gov/ct2/show/NCT04051307
Brief Summary: « A phase I-II study in patients with mutated MPN by vaccinating with PD-L1 and Aginase1 peptides with Montanide ISA-51 as adjuvant, to monitor the immunological response to vaccination and subsequently safety, toxicity and clinical effect » https://clinicaltrials.gov/ct2/show/NCT04051307
Manouche
in
MPN Voice
4 years ago
Has anybody found that regular running helps with CLL?
I am at the "wait and see" stage with my CLL. When my CLL was first diagnosed in April 2019, the ABS Lymphocyte count in my blood was 68.7. I continued to train for a May 5 marathon and my ABS count improved to 49.5 on May 22. After that, I did not run as much, and my ABS Lymphocyte counts rose and
I am at the "wait and see" stage with my CLL. When my CLL was first diagnosed in April 2019, the ABS Lymphocyte count in my blood was 68.7. I continued to train for a May 5 marathon and my ABS count improved to 49.5 on May 22. After that, I did not run as much, and my ABS Lymphocyte counts rose and
HowardR
in
CLL Support
4 years ago
Surgery vs. CyberKnife
Had another PET 9/1 and the tumor grew from 1/8-2.2cm in three months. The needle biopsy I had in June was 'inconclusive'. The thoracic surgeon I went to for a second opinion wants to take the top lobe of my right lung. I looked into CyberKnife and had a consult with a radiology oncologist. She said
Had another PET 9/1 and the tumor grew from 1/8-2.2cm in three months. The needle biopsy I had in June was 'inconclusive'. The thoracic surgeon I went to for a second opinion wants to take the top lobe of my right lung. I looked into CyberKnife and had a consult with a radiology oncologist. She said
dunnellon
in
Lung Conditions Community Forum
4 years ago
Wildfire smoke more dangerous than other air pollutants for asthma patients.
For people who suffer from asthma, wildfire smoke is more hazardous than other types of air pollution, according to a new study from the Desert Research Institute (DRI), the Renown Institute for Health Innovation (Renown IHI) and the Washoe County Health District (WCHD). The study, which published last
For people who suffer from asthma, wildfire smoke is more hazardous than other types of air pollution, according to a new study from the Desert Research Institute (DRI), the Renown Institute for Health Innovation (Renown IHI) and the Washoe County Health District (WCHD). The study, which published last
2greys
in
Lung Conditions Community Forum
4 years ago
CLL Australian Webinar 21 October 2020. Keynote speaker Prof Peter Hillmen, Leeds UK. Interview of Sharon Winton CEO Lymphoma Australia, Q&A
Join MC
Julie McCrossin
and keynote speaker - the world renowned clinician and researcher -
Prof. Peter Hillmen
from St James’s University Hospital Leeds, for a webinar that
promises
to be energetic and full of new information. People from all countries are welcome to join the webinar
Join MC
Julie McCrossin
and keynote speaker - the world renowned clinician and researcher -
Prof. Peter Hillmen
from St James’s University Hospital Leeds, for a webinar that
promises
to be energetic and full of new information. People from all countries are welcome to join the webinar
AussieNeil
Partner
in
CLL Support
4 years ago
MDS and AML
Despite feeling lethargic and tired for over two years and going to the doctors on a regular basis and having over a dozen blood tests abd no referrals earlier we have had the awful news this week that my partner has both MDS and AML and goes into hospital today for 4/5 weeks of chemo with view to stem
Despite feeling lethargic and tired for over two years and going to the doctors on a regular basis and having over a dozen blood tests abd no referrals earlier we have had the awful news this week that my partner has both MDS and AML and goes into hospital today for 4/5 weeks of chemo with view to stem
sportydad
in
Leukaemia Support
4 years ago
MF for 30 years
Hello I was first diagnosed with MF in my late 30s when I had two young children. It had a massive effect on my life, as although I didn't have any symptoms at that stage, I was told that I might become seriously ill and potentially die within 10 years. This meant that I gave up worrying about my (non-existent
Hello I was first diagnosed with MF in my late 30s when I had two young children. It had a massive effect on my life, as although I didn't have any symptoms at that stage, I was told that I might become seriously ill and potentially die within 10 years. This meant that I gave up worrying about my (non-existent
Bullace
in
MPN Voice
4 years ago
Night Sweats
Hello CLL Community Friends. I hope you are all doing well, remaining healthy and safe, especially during these unprecedented crazy times. I was diagnosed with CLL in May of 2018. I've been on wait and watch. Just had a visit with my hematology oncologist last week. My numbers look good and my appointment
Hello CLL Community Friends. I hope you are all doing well, remaining healthy and safe, especially during these unprecedented crazy times. I was diagnosed with CLL in May of 2018. I've been on wait and watch. Just had a visit with my hematology oncologist last week. My numbers look good and my appointment
CouldBworse
in
CLL Support
4 years ago
On bone marrow biopsy (BMB)?
Hello everyone, People with PV/ET regularly (e.g., per month) test their blood to keep track of cell counts and other things. How about bone marrow biopsy (BMB)? Are there repeats of BMB test to check changes after the first one that was performed to detect any mutation like JK2 ? If yes, how the results
Hello everyone, People with PV/ET regularly (e.g., per month) test their blood to keep track of cell counts and other things. How about bone marrow biopsy (BMB)? Are there repeats of BMB test to check changes after the first one that was performed to detect any mutation like JK2 ? If yes, how the results
samiris
in
MPN Voice
4 years ago
Be alert of Secondary MDS
My father is successfully fighting prostate cancer since 3.5 yrs. His cemo (by pills) for 6 months then 40 radiations went well after testical removal. But his hemoglobin started to be low like 9 from 12. We asked doctor couple of times he just asked us to focus on PSA which is 0.01. But now my father
My father is successfully fighting prostate cancer since 3.5 yrs. His cemo (by pills) for 6 months then 40 radiations went well after testical removal. But his hemoglobin started to be low like 9 from 12. We asked doctor couple of times he just asked us to focus on PSA which is 0.01. But now my father
Kshiprakapoor
in
Advanced Prostate Cancer
4 years ago
TPLL
I want to thank you all again for welcoming me into your community. Mike's cancer diagnosis has been very unique. As has his treatment. I don't recall what I have already shared, but his actual diagnosis ended up being TPLL (Tcell Prolymphocytic Leukemia). His WBC count went from 432,000 on 9/30 to 530,000
I want to thank you all again for welcoming me into your community. Mike's cancer diagnosis has been very unique. As has his treatment. I don't recall what I have already shared, but his actual diagnosis ended up being TPLL (Tcell Prolymphocytic Leukemia). His WBC count went from 432,000 on 9/30 to 530,000
Whatadayitwas
in
CLL Support
4 years ago
Joint pain/Bone pain with MF
Recently diagnosed with post ET MF, I have started to get aching in my knees and wrists/hands. I will be able to ask my consultant about it next week but I wondered if this is common with MF or possibly to do with Ruxolitinib. I'm not clear on what bone pain would feel like. It seems to happen more
Recently diagnosed with post ET MF, I have started to get aching in my knees and wrists/hands. I will be able to ask my consultant about it next week but I wondered if this is common with MF or possibly to do with Ruxolitinib. I'm not clear on what bone pain would feel like. It seems to happen more
Otterfield
in
MPN Voice
4 years ago
VenR in Relapsed CLL: 4-Year Results and Evaluation of Impact of Genomic Complexity and Gene Mutations from MURANO 3 study
This is an important evaluation and insight into how your CLL profile affects your response to VR in relapsed and refractory CLL. Sadly it looks like bad genetics is still relatively bad news in terms of PFS even on VenR. "[i]In previous analyses of the MURANO study, fixed-duration venetoclax plus rituximab
This is an important evaluation and insight into how your CLL profile affects your response to VR in relapsed and refractory CLL. Sadly it looks like bad genetics is still relatively bad news in terms of PFS even on VenR. "[i]In previous analyses of the MURANO study, fixed-duration venetoclax plus rituximab
Jm954
Administrator
in
CLL Support
4 years ago
MPN-u unclassified
Hi I’ve only just been diagnosed with MPN-u unclassified so still trying to get my head around things .Am I right I’m thinking it’s a slow growth blood cancer ? I have no mutations but slightly raised platelets ( for 21years & I’m 51) but slight scarring on bone marrow which is a little fibrous .Really
Hi I’ve only just been diagnosed with MPN-u unclassified so still trying to get my head around things .Am I right I’m thinking it’s a slow growth blood cancer ? I have no mutations but slightly raised platelets ( for 21years & I’m 51) but slight scarring on bone marrow which is a little fibrous .Really
Lizzy19
in
MPN Voice
4 years ago
Some good news and hope
A very special day today. My wife Jan was diagnosed with an incurable blood cancer CLL this day 9 years ago age 39. We are in Ireland. After 3 very sick years we were fortunate that she was able to access a clinical trial in the UK and in 2014 started a drug Ibrutinib which targets the cancer. Her
A very special day today. My wife Jan was diagnosed with an incurable blood cancer CLL this day 9 years ago age 39. We are in Ireland. After 3 very sick years we were fortunate that she was able to access a clinical trial in the UK and in 2014 started a drug Ibrutinib which targets the cancer. Her
Irishcll
in
CLL Support
4 years ago
Are immature cells bad and why do I need another bone marrow biopsy?
Have been MF for 15 months and being treated with Ruxolitinib. Not showing any symptoms and feel well, other than an enlarged spleen. Blood counts are good, except for a slightly lower Haemaglobin concentrate, and slightly increased white cells. My last blood test showed some immature velds, so they
Have been MF for 15 months and being treated with Ruxolitinib. Not showing any symptoms and feel well, other than an enlarged spleen. Blood counts are good, except for a slightly lower Haemaglobin concentrate, and slightly increased white cells. My last blood test showed some immature velds, so they
billybrock
in
MPN Voice
4 years ago
Starting hydroxycarbamide and scared!
Hi everyone. It's been a while since I posted but I have been reading a lot on here and find it so reassuring and comforting. I an 60, have PRV Jak2+ diagnosed 4 years ago and thought I was going to start Peginterferon in a couple of weeks (I had delayed starting last year as had holiday booked in
Hi everyone. It's been a while since I posted but I have been reading a lot on here and find it so reassuring and comforting. I an 60, have PRV Jak2+ diagnosed 4 years ago and thought I was going to start Peginterferon in a couple of weeks (I had delayed starting last year as had holiday booked in
Tmg59
in
MPN Voice
4 years ago
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