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jak-2 mutated
could I ask if anyone knows about jak2 mutated postive tested has i still not right sure what it means its on my letters with the condition ive got essential thrombocythaemia which could get aggressive into thrombosis but also says could progess to myelofibrosis or acute myeloid lumkemia ?
could I ask if anyone knows about jak2 mutated postive tested has i still not right sure what it means its on my letters with the condition ive got essential thrombocythaemia which could get aggressive into thrombosis but also says could progess to myelofibrosis or acute myeloid lumkemia ?
Jody00
in
MPN Voice
4 years ago
Question for those living with MF
I was diagnosed in August and have been on Ruxolitinib for almost seven weeks. My blood counts have been really encouraging generally and my red cells are being topped up with transfusions. Last week's Hb before the transfusion was 91, today's was 87. Platelets last week were 117, but today this had
I was diagnosed in August and have been on Ruxolitinib for almost seven weeks. My blood counts have been really encouraging generally and my red cells are being topped up with transfusions. Last week's Hb before the transfusion was 91, today's was 87. Platelets last week were 117, but today this had
Otterfield
in
MPN Voice
4 years ago
Are you a CLL patient worried about returning to work? CLL Society's COVID-19 Official Statement. Share with HR, co-workers, friends, family
https://cllsociety.org/2020/08/cll-societys-official-statement-concerning-cll-chronic-
lymphocytic
-
leukemia
-patients-working-and-traveling-during-the-covid-19-pandemic-8-16-2020-update/
https://cllsociety.org/2020/08/cll-societys-official-statement-concerning-cll-chronic-
lymphocytic
-
leukemia
-patients-working-and-traveling-during-the-covid-19-pandemic-8-16-2020-update/
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
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Anyone tried Claritin for pain?
A week or so ago I posted about knee and wrist pain with MF. The pain in my knees has got worse and often now sort of radiates to my thighs and shins. I did some googling (though I never google the scary stuff about MF!) and found some suggestion that Claritin (the antihistamine Loratadine) might be
A week or so ago I posted about knee and wrist pain with MF. The pain in my knees has got worse and often now sort of radiates to my thighs and shins. I did some googling (though I never google the scary stuff about MF!) and found some suggestion that Claritin (the antihistamine Loratadine) might be
Otterfield
in
MPN Voice
4 years ago
MBL numbers going up
Just had my yearly labs and my WBC increased from 10 to19 and my absolute lymphocytes 7.6 to 12. Everythng else looked pretty good, normal range. Could this be a blip (just got over bad a-topical dermatitis[i] [/i] on three spots for weeks
before resolving a week before labs. Any cause for concern
Just had my yearly labs and my WBC increased from 10 to19 and my absolute lymphocytes 7.6 to 12. Everythng else looked pretty good, normal range. Could this be a blip (just got over bad a-topical dermatitis[i] [/i] on three spots for weeks
before resolving a week before labs. Any cause for concern
Freeskier989
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
Green Tea Extract and Curcumin
Hi All - I’ve been taking green tea extract and curcumin capsules daily since I was diagnosed 18 months ago. I have no symptoms and my blood levels have been very stable. Has anyone had experience with those two supplements?
Hi All - I’ve been taking green tea extract and curcumin capsules daily since I was diagnosed 18 months ago. I have no symptoms and my blood levels have been very stable. Has anyone had experience with those two supplements?
LouisAmbrose
in
CLL Support
4 years ago
Richter's Syndrome
Just diagnosed. I'm 46. Have biopsy tomorrow to determine treatment options. This is really freaking me out. Is this really a death sentence? Need feedback from others that have gone though it
Just diagnosed. I'm 46. Have biopsy tomorrow to determine treatment options. This is really freaking me out. Is this really a death sentence? Need feedback from others that have gone though it
ishudderz
in
CLL Support
4 years ago
A webinar for patients - practical workshop 'Coping with Fatigue' Oct 28th at 4pm
Hi all, this is a challenge that many of us have to manage. Please join us for this participative webinar Register > http://bit.ly/FatigueWebinar https://pic.twitter.com/44DMhhS46y Leukaemia Care are co – hosting this webinar with Lymphoma Action to support patients with understanding and managing
Hi all, this is a challenge that many of us have to manage. Please join us for this participative webinar Register > http://bit.ly/FatigueWebinar https://pic.twitter.com/44DMhhS46y Leukaemia Care are co – hosting this webinar with Lymphoma Action to support patients with understanding and managing
HAIRBEAR_UK
Founder Admin
in
CLL Support
4 years ago
Been taking Exjade to my detriment
Chose to try Exjade after being told I had large iron levels due to transfusions. Was offered a choice of wait and see, think about it or just start. I am taking a trial drug MANIFEST-CPI0601 as well as rux so decided to give it a go. My mistake. This drug crashed my platelets from around 70 to 11 with
Chose to try Exjade after being told I had large iron levels due to transfusions. Was offered a choice of wait and see, think about it or just start. I am taking a trial drug MANIFEST-CPI0601 as well as rux so decided to give it a go. My mistake. This drug crashed my platelets from around 70 to 11 with
skodaguy
in
MPN Voice
4 years ago
Is It Time to Treat Your CLL? What You Need to Know
What You Need to Know Description: When it’s time to move forward with a chronic
lymphocytic
leukemia
(CLL) treatment plan, what determines the best therapy for YOU? In this webinar, Dr. Susan O’Brien, will review key decision-making factors, current CLL treatments and emerging research.
What You Need to Know Description: When it’s time to move forward with a chronic
lymphocytic
leukemia
(CLL) treatment plan, what determines the best therapy for YOU? In this webinar, Dr. Susan O’Brien, will review key decision-making factors, current CLL treatments and emerging research.
lankisterguy
Volunteer
in
CLL Support
4 years ago
Re: ALLELE BURDEN FREQUENCIES IN MPNS IN AUSTRALIA?
Post by MPN-MATE Admin » Fri Oct 02, 2020 3:44 pm
[i]UPDATE COMING...[/i]
Afternoon everyone, The following is an UPDATE to my seeking answers about MPN Patients being enabled to obtain and order "Allele Burden Frequency (ABF)" Testing for all MPN Driver mutations. Allan, (one of our MATES members
Post by MPN-MATE Admin » Fri Oct 02, 2020 3:44 pm
[i]UPDATE COMING...[/i]
Afternoon everyone, The following is an UPDATE to my seeking answers about MPN Patients being enabled to obtain and order "Allele Burden Frequency (ABF)" Testing for all MPN Driver mutations. Allan, (one of our MATES members
socrates_8
in
MPN Voice
4 years ago
Myelodyplastic Syndrome (MDS)
Hi. In my previous post I wrote about reaching a point 18months after completing FCR where my bone marrow stopped producing red cells. This got a diagnosis of MDS which was expected to be irreversible. After several months and 6 blood transfusions I'm thrilled to say my marrow is back in action and
Hi. In my previous post I wrote about reaching a point 18months after completing FCR where my bone marrow stopped producing red cells. This got a diagnosis of MDS which was expected to be irreversible. After several months and 6 blood transfusions I'm thrilled to say my marrow is back in action and
Jotame
in
CLL Support
4 years ago
Vitamin D and Green Tea
Big thanks to this site as I’ve found a new Haematologist recommended here with whom I am 😊 He suggested three cups of Green Tea per day so I’ve included it in my everyday life and will be very interested to see blood test results next year. I have one early morning then make up a two bag mug which
Big thanks to this site as I’ve found a new Haematologist recommended here with whom I am 😊 He suggested three cups of Green Tea per day so I’ve included it in my everyday life and will be very interested to see blood test results next year. I have one early morning then make up a two bag mug which
YelvertonDevon
in
CLL Support
4 years ago
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
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
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
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