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Update and thank you for your support
I would like to thank everyone who replied to my post about the doubts my haematologist raised about my SCT. The wisdom and support here really does make a difference in helping me cope at this frightening and stressful time. I have now had two conversations with my wonderful transplant nurse, who was
I would like to thank everyone who replied to my post about the doubts my haematologist raised about my SCT. The wisdom and support here really does make a difference in helping me cope at this frightening and stressful time. I have now had two conversations with my wonderful transplant nurse, who was
Otterfield
in
MPN Voice
3 years ago
Priority PCR test and SNOMED coding
Thank you for all your replies and empathy. my GP surgery is lovely but they don’t understand the coding! Etc But I will keep trying! I don’t have a nurse specialist and my consultant does not reply to my emails or respond to any telephone messages.Blood cancer UK have been very helpful and they are
Thank you for all your replies and empathy. my GP surgery is lovely but they don’t understand the coding! Etc But I will keep trying! I don’t have a nurse specialist and my consultant does not reply to my emails or respond to any telephone messages.Blood cancer UK have been very helpful and they are
Greencyclist
in
CLL Support
2 years ago
Uk What is the exact SNOMED code for CLL to get priority PCR test kit and letter?
In the continuing saga of trying to get a priority PCR test and letter does anybody know the exact SNOMED code For CLL that has to be on your medical records in the UK for you to get a priority PCR test and letter from NHS England? I am going round and round in circles being pushed from 119 back to
In the continuing saga of trying to get a priority PCR test and letter does anybody know the exact SNOMED code For CLL that has to be on your medical records in the UK for you to get a priority PCR test and letter from NHS England? I am going round and round in circles being pushed from 119 back to
Greencyclist
in
CLL Support
2 years ago
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Accessing new treatments against COVID19 and priority PCR home test kits
Blood Cancer UK have sent me a survey "With an increase in Omicron cases, we know it's an understandably worrying time for people with blood cancer. That's why we've launched a new survey about blood cancer and vaccines, access to new treatments, and employment" I cannot direct you to this with a direct
Blood Cancer UK have sent me a survey "With an increase in Omicron cases, we know it's an understandably worrying time for people with blood cancer. That's why we've launched a new survey about blood cancer and vaccines, access to new treatments, and employment" I cannot direct you to this with a direct
Sumoldbloke
in
CLL Support
2 years ago
Cancer again
Has anyone gotten a secondary cancer while on W & W ? I had breast cancer two years ago and had a lumpectomy with no chemo or radiation. My cancer is now back in same breast. Thinking of a mastectomy this time but still concerned that the CLL might be an underlying cause. Any comments would be very
Has anyone gotten a secondary cancer while on W & W ? I had breast cancer two years ago and had a lumpectomy with no chemo or radiation. My cancer is now back in same breast. Thinking of a mastectomy this time but still concerned that the CLL might be an underlying cause. Any comments would be very
1962jns
in
CLL Support
3 years ago
Hija
We’ll I am on hydroxycarbamide, same thing , because I have Polycythemia Vera , also diagnosed in 2018, also very rare. I t belongs to the same group of blood cancer. I still get itchy skin, fatigue , feeling hot at night and have developed a fatty liver. I have done well on my meds overall. If you
We’ll I am on hydroxycarbamide, same thing , because I have Polycythemia Vera , also diagnosed in 2018, also very rare. I t belongs to the same group of blood cancer. I still get itchy skin, fatigue , feeling hot at night and have developed a fatty liver. I have done well on my meds overall. If you
Triergirl55
in
MPN Voice
3 years ago
Next-level Dose Given in Trial of Stem Cell Therapy for Bradykinesia
IMAC Holdings has completed dosing the second group of patients in its Phase 1 clinical trial testing umbilical cord-derived mesenchymal stem cell therapy for the treatment of bradykinesia due to Parkinson’s disease. About a year ago, a first group of five patients received a low dose of the therapy
IMAC Holdings has completed dosing the second group of patients in its Phase 1 clinical trial testing umbilical cord-derived mesenchymal stem cell therapy for the treatment of bradykinesia due to Parkinson’s disease. About a year ago, a first group of five patients received a low dose of the therapy
Hidden
in
Cure Parkinson's
2 years ago
Can I quote you?
Hey experts … PMRpro, DorsetLady et al, My local Member of Parliament has just visited me to get information to put to our Federal Health Minister in an attempt to get an exemption so that I can have my allocation of tocilizumab extended, or indeed get the drug made available as it is for RA. Among
Hey experts … PMRpro, DorsetLady et al, My local Member of Parliament has just visited me to get information to put to our Federal Health Minister in an attempt to get an exemption so that I can have my allocation of tocilizumab extended, or indeed get the drug made available as it is for RA. Among
LemonZest11
in
PMRGCAuk
2 years ago
NHS sending out a PCR test to all CLL patients
I've just read Leukaemia Care's latest email newsletter. In their advice about these new Covid treatments for the likes of us, they say: "If you have symptoms of COVID-19, you should take a PCR test. If you are eligible for the COVID-19 treatments,
you will soon be sent a PCR test in the post
I've just read Leukaemia Care's latest email newsletter. In their advice about these new Covid treatments for the likes of us, they say: "If you have symptoms of COVID-19, you should take a PCR test. If you are eligible for the COVID-19 treatments,
you will soon be sent a PCR test in the post
flyhigher
in
CLL Support
3 years ago
Is there anyone with M.E. and CLL ?
is there anyone especially in the UK , with Myalgic Encephalomyelitis. (M E ) and. CLL ? As you can see on my profile I was diagnosed with ME a long time ago and then in 2013 also with CLL. I am still on watch and wait but particularly interested if anyone with ME and CLL has had treatment as I
is there anyone especially in the UK , with Myalgic Encephalomyelitis. (M E ) and. CLL ? As you can see on my profile I was diagnosed with ME a long time ago and then in 2013 also with CLL. I am still on watch and wait but particularly interested if anyone with ME and CLL has had treatment as I
Greencyclist
in
CLL Support
2 years ago
Researchers report third case of HIV remission after stem cell transplant using umbilical cord blood
A US woman has become the third known person who's gone into HIV remission, and the first mixed-race woman, thanks to a transplant of stem cells from umbilical cord blood, according to research presented at a conference Tuesday. https://edition.cnn.com/2022/02/15/health/hiv-third-person-remission/index.html
A US woman has become the third known person who's gone into HIV remission, and the first mixed-race woman, thanks to a transplant of stem cells from umbilical cord blood, according to research presented at a conference Tuesday. https://edition.cnn.com/2022/02/15/health/hiv-third-person-remission/index.html
Farooqji
in
Cure Parkinson's
2 years ago
COVID-19 Mortality, Hospitalization Risk Higher in Patients With Blood Cancers
We've discussed this often here. This is the latest from ASH 2021. Of interest: <<Patients with MPN and plasma cell dyscrasia had less severe COVID-19 illness overall compared to patients with CLL, leukemia, MDS, or lymphoma.>> https://www.pharmacytimes.com/view/covid-19-mortality-hospitalization-risk-higher-in-patients-with-blood-cancers
We've discussed this often here. This is the latest from ASH 2021. Of interest: <<Patients with MPN and plasma cell dyscrasia had less severe COVID-19 illness overall compared to patients with CLL, leukemia, MDS, or lymphoma.>> https://www.pharmacytimes.com/view/covid-19-mortality-hospitalization-risk-higher-in-patients-with-blood-cancers
EPguy
in
MPN Voice
3 years ago
Is this possibly GCA again?
I am looking for some advice please. I was diagnosed with PMR 4four years ago and this was followed by Giant Cell Arteritis. I was given 60 mgs Prenisolone and gradually tapered down. Unfortunately I had a flare a few months later and I was not given appropriate advice and the sight in my left eye
I am looking for some advice please. I was diagnosed with PMR 4four years ago and this was followed by Giant Cell Arteritis. I was given 60 mgs Prenisolone and gradually tapered down. Unfortunately I had a flare a few months later and I was not given appropriate advice and the sight in my left eye
pamela4215
in
PMRGCAuk
2 years ago
ASH 2021 -- cytopenic myelofibrosis
I've been checking out the Hematology conference. For cytopenic myelofibrosis a Phase 3 trial PERSIST-2 reports pacritinib has advantages over Rux. https://www.cancernetwork.com/view/treatment-with-tafasitamab-lenalidomide-and-r-chop-yields-promising-activity-in-untreated-dlbcl <<Among the 43 patients
I've been checking out the Hematology conference. For cytopenic myelofibrosis a Phase 3 trial PERSIST-2 reports pacritinib has advantages over Rux. https://www.cancernetwork.com/view/treatment-with-tafasitamab-lenalidomide-and-r-chop-yields-promising-activity-in-untreated-dlbcl <<Among the 43 patients
EPguy
in
MPN Voice
3 years ago
Pred sick day rules.
I'm currently on 2mg of Pred and weekly Tocilizumab and doing Ok as far as PMR and GCA symptoms go. However I've caught the dratted cold that's doing the rounds and wonder whether this means I should increase the Pred in line with the Sick Day Rules leaflet. I'm only using Paracetamol for the cold so
I'm currently on 2mg of Pred and weekly Tocilizumab and doing Ok as far as PMR and GCA symptoms go. However I've caught the dratted cold that's doing the rounds and wonder whether this means I should increase the Pred in line with the Sick Day Rules leaflet. I'm only using Paracetamol for the cold so
PastelsinArt
in
PMRGCAuk
2 years ago
Please Help with the Global Leukaemia Patient Experience Survey 2021
The CLL Advocates Network (CLLAN) in partnership with Acute Leukemia Advocates Network (ALAN) and the CML Advocates Network (CMLAN) are running a Global Leukemia Patient Experience Survey 2021 to create a global picture of the key issues, experiences and unmet needs of leukaemia patients. The survey
The CLL Advocates Network (CLLAN) in partnership with Acute Leukemia Advocates Network (ALAN) and the CML Advocates Network (CMLAN) are running a Global Leukemia Patient Experience Survey 2021 to create a global picture of the key issues, experiences and unmet needs of leukaemia patients. The survey
Jm954
Administrator
in
CLL Support
3 years ago
Cord blood donation Northern Ireland
Does anyone know much about this? I’m very early on in pregnancy but heard about this years ago when beother in law had to have a stem cell transplant. I’m not sure if it’s available in Northern Ireland. Does it have to be donated or can it be froze for possible future use for child?
Does anyone know much about this? I’m very early on in pregnancy but heard about this years ago when beother in law had to have a stem cell transplant. I’m not sure if it’s available in Northern Ireland. Does it have to be donated or can it be froze for possible future use for child?
Babytwinkle
in
Pregnancy and Parenting Support
2 years ago
Is inositol, hexaphosphate form, bad for CLL?
Hi, all. IP6 (a form of inositol called inositol hexaphosphate readily available as a supplement) has been shown to be very anti-cancer, including at least one blood cancer, AML I think. However, as I read about how it works, it seems to indicate that it increases or activates Bruton Tyrosine Kinase
Hi, all. IP6 (a form of inositol called inositol hexaphosphate readily available as a supplement) has been shown to be very anti-cancer, including at least one blood cancer, AML I think. However, as I read about how it works, it seems to indicate that it increases or activates Bruton Tyrosine Kinase
Vlaminck
in
CLL Support
2 years ago
WARWICK's Latest Update on his POST ASCT journey thus far...
Post by MPN-MATE Admin » Sat Feb 12, 2022 10:39 pm Evening all... :D As some of you may recall, sometime ago in 2021, Warwick, (one of our committee members), underwent his Allogenic Stem Cell Transplant (ASCT) journey. While his condition is deemed a success, the journey itself remains ongoing w/
Post by MPN-MATE Admin » Sat Feb 12, 2022 10:39 pm Evening all... :D As some of you may recall, sometime ago in 2021, Warwick, (one of our committee members), underwent his Allogenic Stem Cell Transplant (ASCT) journey. While his condition is deemed a success, the journey itself remains ongoing w/
socrates_8
in
MPN Voice
2 years ago
Assistance with Potential misdiagnosis.
Hi All, I was unsure where to turn and you guys are my last hope! In July 2020 I was diagnosed with MS ( Multiple Sclerosis ) due to having some numbness and tingling in legs and foot and cognitive problems ( forgetful and thinking issues ) and extreme fatigue. I then had an MRI which revealed lesions
Hi All, I was unsure where to turn and you guys are my last hope! In July 2020 I was diagnosed with MS ( Multiple Sclerosis ) due to having some numbness and tingling in legs and foot and cognitive problems ( forgetful and thinking issues ) and extreme fatigue. I then had an MRI which revealed lesions
smileysammi
in
Pernicious Anaemia Society
2 years ago
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