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Mast cell leukaemia
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PV and CML?
hi just diagnosed with PV JAK2+ve. I also have 1 type of my white cells slightly high. Could I have CML at the same time as PV. My hospital notes had CML?
hi just diagnosed with PV JAK2+ve. I also have 1 type of my white cells slightly high. Could I have CML at the same time as PV. My hospital notes had CML?
DougyW
in
MPN Voice
2 years ago
1st day on Ruxolitinib
The doctor took me off both Hydroxy and Anagrelide to start on new medication Ruxolitinib 20mg x2 daily. im a bit nervous about it, as I gained a lot of weight with the other medication and shielding, I don’t want to gain more. I know I have to lose some weight (I’ve done it before and I’ll do it again
The doctor took me off both Hydroxy and Anagrelide to start on new medication Ruxolitinib 20mg x2 daily. im a bit nervous about it, as I gained a lot of weight with the other medication and shielding, I don’t want to gain more. I know I have to lose some weight (I’ve done it before and I’ll do it again
wendycu
in
MPN Voice
2 years ago
Meet Henry
Spot Leukaemia News!!! Us and Leukaemia UK are excited to launch our new Spot Leukaemia video which aims to make the signs and symptoms the most memorable yet! Introducing Henry! He’s here to make the signs and symptoms of leukaemia memorable. In the video, you will see Henry the Macaw parrot as
Spot Leukaemia News!!! Us and Leukaemia UK are excited to launch our new Spot Leukaemia video which aims to make the signs and symptoms the most memorable yet! Introducing Henry! He’s here to make the signs and symptoms of leukaemia memorable. In the video, you will see Henry the Macaw parrot as
NicoleLeukaemiaCare
in
Leukaemia Support
2 years ago
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Tocilizumab
I have GCA and PMR. I am on 40mg Pred. The inflammation markers have normalised, but I still have headaches. Doctors want to reduce Pred because of the side effects I am experiencing. I started Methotrexate injections, but they were paused for the last two weeks to see if they were causing the headaches
I have GCA and PMR. I am on 40mg Pred. The inflammation markers have normalised, but I still have headaches. Doctors want to reduce Pred because of the side effects I am experiencing. I started Methotrexate injections, but they were paused for the last two weeks to see if they were causing the headaches
PQXZT
in
PMRGCAuk
2 years ago
essential thrombocytosis
I was diagnosed with et almost 4 years ago,had all the tests investigations etc,my platelets are now almost normal but apparently my hb is slightly low.i am very worried in case I have myelofibrosis which apparently is quite serious, can anyone help . Thanks.
I was diagnosed with et almost 4 years ago,had all the tests investigations etc,my platelets are now almost normal but apparently my hb is slightly low.i am very worried in case I have myelofibrosis which apparently is quite serious, can anyone help . Thanks.
glyndale
in
MPN Voice
2 years ago
Fibrosis, Grade 0 does not mean None
In another thread we've been discussing cellularity and fibrosis. I've found an unexpected (to me) result in my study. None is not an answer, we all need some fibers of fibrosis to support the marrow. The MPN condition starts when "some" becomes "more". "Structural fibrils constitute a physiological
In another thread we've been discussing cellularity and fibrosis. I've found an unexpected (to me) result in my study. None is not an answer, we all need some fibers of fibrosis to support the marrow. The MPN condition starts when "some" becomes "more". "Structural fibrils constitute a physiological
EPguy
in
MPN Voice
2 years ago
Joining the Group
Hi, Folks. I am joining as a newly diagnosed SLL patient, currently under treatment with BTKi and Gazyva. So far, I have read through many posts and have been comforted by your experiences and ways of coping with our ongoing immunity issues. I honestly feel very confident that these new treatments
Hi, Folks. I am joining as a newly diagnosed SLL patient, currently under treatment with BTKi and Gazyva. So far, I have read through many posts and have been comforted by your experiences and ways of coping with our ongoing immunity issues. I honestly feel very confident that these new treatments
tleachhsv
in
CLL America Support
2 years ago
Just been approved for Vitamin B12 injection treatment.
hello everyone this is my first post. I have been experiencing many of the symptoms of functional b12 deficiency/pernicious anemia for close to 7 years. My doctor was reluctant for whatever reason to authorize the injections, even though I had a positive parietal cell antibody test. I guess my question
hello everyone this is my first post. I have been experiencing many of the symptoms of functional b12 deficiency/pernicious anemia for close to 7 years. My doctor was reluctant for whatever reason to authorize the injections, even though I had a positive parietal cell antibody test. I guess my question
MikeyO
in
Pernicious Anaemia Society
2 years ago
Does Covid boost ALS?
I'm W&W for 2 years. Abs lymphs (ALS) were 82K in July. Got 1st Evusheld 8/23. Got Covid 8/31 and started Paxlovid same day. 5 days later, 9/5, felt great then went on a vigorous 31 miles bike ride (probably too soon for such exercise). Then rebound on 9/12 with positive home test. Never got fever but
I'm W&W for 2 years. Abs lymphs (ALS) were 82K in July. Got 1st Evusheld 8/23. Got Covid 8/31 and started Paxlovid same day. 5 days later, 9/5, felt great then went on a vigorous 31 miles bike ride (probably too soon for such exercise). Then rebound on 9/12 with positive home test. Never got fever but
JDG45
in
CLL Support
2 years ago
Pred affects glucose...what about thyroid?
i have been struggling to reduce my pred dose. Since I went from 22.5 to 20 every day has been different. The first day was ok. No real change. Then my pain was high....I was shakey, very tired/exhausted,efeated for the rest. Today my pain is a smidge better..but I am so tired. I have that out
i have been struggling to reduce my pred dose. Since I went from 22.5 to 20 every day has been different. The first day was ok. No real change. Then my pain was high....I was shakey, very tired/exhausted,efeated for the rest. Today my pain is a smidge better..but I am so tired. I have that out
Wallysma
in
PMRGCAuk
2 years ago
Rapamycin
I have friends using low doses of this drug and I have an appointment with a doctor that prescribes it. When I asked my Hematologist at Mayo about it they said this drug may be get approved sooner than later for MPN’s. Has anyone researched this or used it. It is a drug used for organ transplants but
I have friends using low doses of this drug and I have an appointment with a doctor that prescribes it. When I asked my Hematologist at Mayo about it they said this drug may be get approved sooner than later for MPN’s. Has anyone researched this or used it. It is a drug used for organ transplants but
MDI55
in
MPN Voice
2 years ago
Second Malignancies Among Older Patients With Classical MPN Treated With Hydroxyurea
TAKE-HOME MESSAGE In this retrospective cohort study of 4023 patients aged ≥66 years with classical Philadelphia chromosome–negative myeloproliferative neoplasms (MPN), there was no significant difference in the incidence of solid or hematologic second malignancies in patients treated with hydroxyurea
TAKE-HOME MESSAGE In this retrospective cohort study of 4023 patients aged ≥66 years with classical Philadelphia chromosome–negative myeloproliferative neoplasms (MPN), there was no significant difference in the incidence of solid or hematologic second malignancies in patients treated with hydroxyurea
Manouche
in
MPN Voice
2 years ago
ATG treatment /Rabbit antigens
Hi as previously explained I am awaiting bone marrow transplant. Have been told I will need rabbit antigens or ATG ahead of the process. From what the consultant has said it can cause lots of side effects eg high temp amongst other things. Has anybody else had this treatment? Thanks Joanne
Hi as previously explained I am awaiting bone marrow transplant. Have been told I will need rabbit antigens or ATG ahead of the process. From what the consultant has said it can cause lots of side effects eg high temp amongst other things. Has anybody else had this treatment? Thanks Joanne
Platelets2022
in
Leukaemia Support
2 years ago
blood test bingo!
I've just been to Bristol stem cell department in preparation for a possible Stem cell transplant. I had to have 14 phials of blood taken for tests. Is this a record at one sitting? !!
I've just been to Bristol stem cell department in preparation for a possible Stem cell transplant. I had to have 14 phials of blood taken for tests. Is this a record at one sitting? !!
Scaredy_cat
in
MPN Voice
2 years ago
A brief update post Venetoclax+Rituximab - treatment number 4
Many of you have been kind enough to ask about my current situation. For those not aware, briefly - I relapsed within days of stopping Ibrutinib (due to funding and end of the trial) which I had received as part of the FLAIR trial. I had 7cm nodes under my arms which had come up almost overnight
Many of you have been kind enough to ask about my current situation. For those not aware, briefly - I relapsed within days of stopping Ibrutinib (due to funding and end of the trial) which I had received as part of the FLAIR trial. I had 7cm nodes under my arms which had come up almost overnight
Jm954
Administrator
in
CLL Support
2 years ago
See a Dermatologist On a Regular Basis, if possible.
Once I was diagnosed with cll 8 years ago (in my mid-60’s), I was advised to see a dermatologist on a regular basis. I was lucky that my family physician’s partner is a dermatologist, so finding a dermatologist was easy. At least in Ontario, it is getting more and more difficult to find a dermatologist
Once I was diagnosed with cll 8 years ago (in my mid-60’s), I was advised to see a dermatologist on a regular basis. I was lucky that my family physician’s partner is a dermatologist, so finding a dermatologist was easy. At least in Ontario, it is getting more and more difficult to find a dermatologist
Vizilo
in
CLL Support
2 years ago
Doctor cannot fully diagnose without bone marrow biopsy and PET scan?
Update Results: Hello i did have the cyclometery test done, but i didnt put it here before. Is thaat the same as a FISH test? Here are my results: An abnormal CD5-positive B cell population accounts for approximately 35% of lymphocytes and 13% of total events. This population shows kappa restriction
Update Results: Hello i did have the cyclometery test done, but i didnt put it here before. Is thaat the same as a FISH test? Here are my results: An abnormal CD5-positive B cell population accounts for approximately 35% of lymphocytes and 13% of total events. This population shows kappa restriction
SunCalifornia
in
CLL Support
2 years ago
Here we go again!
GCA/PMR for over 5 years. Pred down to 6mg . Been taken off Tocilizumab but can’t tolerate other steroid sparers. Had appointment with Rheumie and blood test. CRP high so PET scan arranged. She has put me back up to 40mg as inflammation showing in all usual places. It feels like back to square 1. Has
GCA/PMR for over 5 years. Pred down to 6mg . Been taken off Tocilizumab but can’t tolerate other steroid sparers. Had appointment with Rheumie and blood test. CRP high so PET scan arranged. She has put me back up to 40mg as inflammation showing in all usual places. It feels like back to square 1. Has
broomfield28
in
PMRGCAuk
2 years ago
Study shows that over half of known human pathogenic diseases can be aggravated by climate change
Recently published in Nature https://www.nature.com/articles/s41558-022-01426-1 [i]"Here we carried out a systematic search for empirical examples about the impacts of ten climatic hazards sensitive to greenhouse gas (GHG) emissions on each known human pathogenic disease. We found that 58% (that is,
Recently published in Nature https://www.nature.com/articles/s41558-022-01426-1 [i]"Here we carried out a systematic search for empirical examples about the impacts of ten climatic hazards sensitive to greenhouse gas (GHG) emissions on each known human pathogenic disease. We found that 58% (that is,
bennevisplace
in
CLL Support
2 years ago
Need Urgent help for CAR-T therapy
Hello! My friend, a 57 year old male, who resides in India, has been suggested CAR-T therapy as a last resort. Here’s his cancer chronology 9/2009 - DX - Grade 2 Follicular Lymphoma. 9/09 to 11/2016 - W&W 11/2016 - NHL - infiltrating liver 11/2016 to 3/17 - 6 rounds of R-CHOP 4-17 to 11
Hello! My friend, a 57 year old male, who resides in India, has been suggested CAR-T therapy as a last resort. Here’s his cancer chronology 9/2009 - DX - Grade 2 Follicular Lymphoma. 9/09 to 11/2016 - W&W 11/2016 - NHL - infiltrating liver 11/2016 to 3/17 - 6 rounds of R-CHOP 4-17 to 11
nuji
in
CLL Support
2 years ago
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