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Does anyone know whether I will experience steroid withdrawal even though I’m on tocilizumab?
I have tapered down (from 40mg) to 5mg pred. I began a course of weekly TCZ injections 8 weeks ago. I need to stop taking the pred. I’m wary as I have experienced steroid withdrawal on a prior occasion. I am debating whether to keep taking it over Christmas or to stop now… and I’m wondering whether:
I have tapered down (from 40mg) to 5mg pred. I began a course of weekly TCZ injections 8 weeks ago. I need to stop taking the pred. I’m wary as I have experienced steroid withdrawal on a prior occasion. I am debating whether to keep taking it over Christmas or to stop now… and I’m wondering whether:
Erikaknitssocks
in
PMRGCAuk
3 years ago
About MF progression
I have progressed this year to MF from ET with grade 3 fibrosis. I'm reasonably well in myself but my platelets have slumped to 70. I started on 5mg ruxolitinib 6 weeks ago so I know it is too early to say if it's working, however I would like to know more about how it how it feels to have MF getting
I have progressed this year to MF from ET with grade 3 fibrosis. I'm reasonably well in myself but my platelets have slumped to 70. I started on 5mg ruxolitinib 6 weeks ago so I know it is too early to say if it's working, however I would like to know more about how it how it feels to have MF getting
Scaredy_cat
in
MPN Voice
3 years ago
Night Sweats
Hi everyone, I am looking for some feedback on night sweats. 42 years old (live in Ireland), diagnosed with ET in 2017, progressed to MF in 2020. Been having horrendous night sweats since February 2018. Under the care of Haematologist I have tried Jakafi, HU, and Interferon, none of which had any impact
Hi everyone, I am looking for some feedback on night sweats. 42 years old (live in Ireland), diagnosed with ET in 2017, progressed to MF in 2020. Been having horrendous night sweats since February 2018. Under the care of Haematologist I have tried Jakafi, HU, and Interferon, none of which had any impact
Navy12
in
MPN Voice
3 years ago
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"Becoming Your Own (CLL)Project Manager" by Doreen Zetterlund is part of CLL Society & Huntsman Cancer Institute's Monday Nov. 8th CLL Forum
Tuesday Nov. 9th! Still time to register! Patients who manage their own CLL strategies without the help of a caregiver are in for a rare treat as CLL patient Doreen Zetterlund leads us through her amazing "how to" video Becoming Your Own Project Manager. Doreen's presentation is part of Huntsman Cancer
Tuesday Nov. 9th! Still time to register! Patients who manage their own CLL strategies without the help of a caregiver are in for a rare treat as CLL patient Doreen Zetterlund leads us through her amazing "how to" video Becoming Your Own Project Manager. Doreen's presentation is part of Huntsman Cancer
bkoffman
CLL CURE Hero
in
CLL Support
3 years ago
CD38 In CLL
Went for my annual checkup yesterday, WBC at 19.1 from 15.1 last year. Not enough WBC to know if mutated or not. The doctor did confirm I'm don't have 17p but I do have CD38.. according to Goggle I may see God sooner! What's the deal?
Went for my annual checkup yesterday, WBC at 19.1 from 15.1 last year. Not enough WBC to know if mutated or not. The doctor did confirm I'm don't have 17p but I do have CD38.. according to Goggle I may see God sooner! What's the deal?
Laura3mini
in
CLL Support
3 years ago
Tocilizumab cessation.
I posted recently concerning the fear and dread the withdrawal of this excellent treatment causes myself and fellow sufferers of GCA/PMR. To further update I am a constituent of Sajid David and have therefore e-mailed him to express our shared distress at having this treatment given and then taken away
I posted recently concerning the fear and dread the withdrawal of this excellent treatment causes myself and fellow sufferers of GCA/PMR. To further update I am a constituent of Sajid David and have therefore e-mailed him to express our shared distress at having this treatment given and then taken away
AncientMariner
in
PMRGCAuk
3 years ago
Stopping Tocilizumab
My Ophthalmologist has now mentioned ending my "allocation" of Tocilizumab whereby I will be maintained on 15 mg of Hydrocortisone and 20 mg of Methotrexate. I am unnerved by this and feel it will leave me at an increased vulnerability to relapse and have only one functioning eye. Has anyone gone through
My Ophthalmologist has now mentioned ending my "allocation" of Tocilizumab whereby I will be maintained on 15 mg of Hydrocortisone and 20 mg of Methotrexate. I am unnerved by this and feel it will leave me at an increased vulnerability to relapse and have only one functioning eye. Has anyone gone through
AncientMariner
in
PMRGCAuk
3 years ago
Treatment option with del 17 positive but IGHV mutated
I am CLL since 2003 on wait and watch. Now my count has increased to 80000 and platlets fallen to 1 Lakhs. RBC is normal.My spleen is 16.5 cms My FISH report indicates del17 positive but IGHV is mutated. Is my CLL agressive and needs special treatment especially because I am del17 positive . But IGHV
I am CLL since 2003 on wait and watch. Now my count has increased to 80000 and platlets fallen to 1 Lakhs. RBC is normal.My spleen is 16.5 cms My FISH report indicates del17 positive but IGHV is mutated. Is my CLL agressive and needs special treatment especially because I am del17 positive . But IGHV
Ashwas
in
CLL Support
3 years ago
Steroid sparers
I posted a few weeks ago to ask if anyone had been given Mycophenolate so Tocilizumab could be withdrawn. I only got a couple of replies so I guess not many have. I gave them a try and felt as though I was back to pre diagnosis. Rheumatologist said to try again more slowly. Same again. Not for me. I
I posted a few weeks ago to ask if anyone had been given Mycophenolate so Tocilizumab could be withdrawn. I only got a couple of replies so I guess not many have. I gave them a try and felt as though I was back to pre diagnosis. Rheumatologist said to try again more slowly. Same again. Not for me. I
marantha
in
PMRGCAuk
3 years ago
3rd Covid Vaccine
So I got my letter from Haematology today about the 3rd primary covid vaccine. Moment of excitement, then read through frantically trying to find MPNs or PV on the list of eligible criteria. It wasn't there. Re-read the three page letter a little more frantically and finally found the word hydroxycarbamide
So I got my letter from Haematology today about the 3rd primary covid vaccine. Moment of excitement, then read through frantically trying to find MPNs or PV on the list of eligible criteria. It wasn't there. Re-read the three page letter a little more frantically and finally found the word hydroxycarbamide
MWxxxx
in
MPN Voice
3 years ago
UK National COVID cancer test survey - Any results
Hi. I have just had a negative antibody test result after taking the National COVID cancer survey test. Obviously disappointed after having the 3rd dose of the Pfizer vaccine on the 2 Oct. Not sure if it makes a difference to me only waiting 17 day between the Jab and the test, perhaps I should have
Hi. I have just had a negative antibody test result after taking the National COVID cancer survey test. Obviously disappointed after having the 3rd dose of the Pfizer vaccine on the 2 Oct. Not sure if it makes a difference to me only waiting 17 day between the Jab and the test, perhaps I should have
Strech51
in
CLL Support
3 years ago
Turmeric and Ruxolitinib
I have been taking Turmeric Shots for sometime and found them a tremendous benefit in easing the inflammation for my OA. However in March I started taking Ruxolitinib and Pharmacy at Guys said I must stop taking the Turmeric. I'm gutted. I stopped about a month ago and the pain has returned big time
I have been taking Turmeric Shots for sometime and found them a tremendous benefit in easing the inflammation for my OA. However in March I started taking Ruxolitinib and Pharmacy at Guys said I must stop taking the Turmeric. I'm gutted. I stopped about a month ago and the pain has returned big time
Heather270240
in
MPN Voice
3 years ago
INF+ ATO Study, "A knockout combination for MPN stem cells"
Some have likely seen this study. I looked into it some more today and realize it's a neat pre-clinical result. This is just FYI right now but it's an example of potential good things to come. (I just noticed Manouche posted on this last year, anyway maybe some new details here) "JAK2V617F myeloproliferative
Some have likely seen this study. I looked into it some more today and realize it's a neat pre-clinical result. This is just FYI right now but it's an example of potential good things to come. (I just noticed Manouche posted on this last year, anyway maybe some new details here) "JAK2V617F myeloproliferative
EPguy
in
MPN Voice
3 years ago
Anyone know who is delivering the third primary Covid vaccine?
I took the letter from MPN voice to my surgery yesterday to be told that they are only doing boosters. I have left it with a letter for my GP to see what happens, but it appears locally that they have not taken this into account as yet. Is anyone else getting a similar reaction?
I took the letter from MPN voice to my surgery yesterday to be told that they are only doing boosters. I have left it with a letter for my GP to see what happens, but it appears locally that they have not taken this into account as yet. Is anyone else getting a similar reaction?
gset
in
MPN Voice
3 years ago
Intense exercise
I have early stage CLL diagnosed about a year ago. I am a regular marathon runner and just a week ago ran my first 50 mile run. My hematologist told me not to change anything I was doing including my ultra running. So far I don’t think I have had any adverse effects from this passion of mine which is
I have early stage CLL diagnosed about a year ago. I am a regular marathon runner and just a week ago ran my first 50 mile run. My hematologist told me not to change anything I was doing including my ultra running. So far I don’t think I have had any adverse effects from this passion of mine which is
celticfan
in
CLL Support
3 years ago
Acalabrutinib Plus Venetoclax and Obinutuzumab Achieves High Bone Marrow uMRD Rate in Chronic Lymphocytic Leukemia - CLL
Great news from this long awaited first published phase 2 study reporting the efficacy of this AVO triplet, which are the most active new drugs approved for patients with CLL. [i]"In patients with chronic lymphocytic leukemia (CLL) and undetectable minimal residual disease (MRD) in the bone marrow,
Great news from this long awaited first published phase 2 study reporting the efficacy of this AVO triplet, which are the most active new drugs approved for patients with CLL. [i]"In patients with chronic lymphocytic leukemia (CLL) and undetectable minimal residual disease (MRD) in the bone marrow,
AussieNeil
Partner
in
CLL Support
3 years ago
Waiting for diagnosis
Hello I'm 61 and haven't yet been diagnosed with CLL although my GP has suggested I have it. I'm waiting for my haematology appointment but have been triaged as on the 12 week list. That's all very well for them to say - they don't have to lie awake thinking about whether or not I have a blood cancer
Hello I'm 61 and haven't yet been diagnosed with CLL although my GP has suggested I have it. I'm waiting for my haematology appointment but have been triaged as on the 12 week list. That's all very well for them to say - they don't have to lie awake thinking about whether or not I have a blood cancer
Stitcher100
in
CLL Support
3 years ago
3.30pm 14th October webinar - Immunisations and living with the challenges of a compromised immune system with CLL
Leukaemia Care have organised this webinar to follow on from yesterday's webinar for people affected by a diagnosis of CLL . It will be held at
3.30PM GMT 14th October
You can register in advance here: https://us02web.zoom.us/webinar/register/WN_0_8lKqLPQVGf4JYvwt2aRw The webinar is to aid with
Leukaemia Care have organised this webinar to follow on from yesterday's webinar for people affected by a diagnosis of CLL . It will be held at
3.30PM GMT 14th October
You can register in advance here: https://us02web.zoom.us/webinar/register/WN_0_8lKqLPQVGf4JYvwt2aRw The webinar is to aid with
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Join us tomorrow for webinar - COVID-19 and leukaemia; what more do we know?
Join us
tomorrow Tuesday 28th September at 4.30pm
for a discussion and update from clinical experts and trials data looking at strategies for the immune compromised.. You can register here: https://us02web.zoom.us/webinar/register/WN_ReHr0TxjRoOU3tcVmruR8w This Leukaemia Care webinar will explore
Join us
tomorrow Tuesday 28th September at 4.30pm
for a discussion and update from clinical experts and trials data looking at strategies for the immune compromised.. You can register here: https://us02web.zoom.us/webinar/register/WN_ReHr0TxjRoOU3tcVmruR8w This Leukaemia Care webinar will explore
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Pruritus and peginterferon
Does anyone feel their pruritus has worsened while using peginterferon? Also if the itching becomes more bothersome does it mean the illness is getting worse? I am on weekly injections 90mcg for primary myelofibrosis for about 2 years and do not have a lot of itching, just occasional.
Does anyone feel their pruritus has worsened while using peginterferon? Also if the itching becomes more bothersome does it mean the illness is getting worse? I am on weekly injections 90mcg for primary myelofibrosis for about 2 years and do not have a lot of itching, just occasional.
caroline_284
in
MPN Voice
3 years ago
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