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Mast cell leukaemia
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continuing the journey
I just had my 3rd round of Chemotherapy ( O CHOP). Doing pretty well, will see 2nd week is usually the hardest. My oncologist was very pleased with how I have responded (ei. Platelets 357 from 1st chemo 10).I also had a port put in my chest last week for easier access for infusion iOS and blood work.
I just had my 3rd round of Chemotherapy ( O CHOP). Doing pretty well, will see 2nd week is usually the hardest. My oncologist was very pleased with how I have responded (ei. Platelets 357 from 1st chemo 10).I also had a port put in my chest last week for easier access for infusion iOS and blood work.
FiArt12X
in
CLL Support
1 month ago
Quite the CLL journey
2012-2013 suspicion of CLL, enlarged lymph nodes in abdomen. Meet with oncologist, blood work does not reveal definitive diagnosis. Yearly appointments with blood work recommended 2016 enlarged lymph node removed from neck, biopsy confirmed CLL, watch and wait. 2018 escalating white blood count and
2012-2013 suspicion of CLL, enlarged lymph nodes in abdomen. Meet with oncologist, blood work does not reveal definitive diagnosis. Yearly appointments with blood work recommended 2016 enlarged lymph node removed from neck, biopsy confirmed CLL, watch and wait. 2018 escalating white blood count and
FiArt12X
in
CLL Support
1 month ago
Japan and stem cells treatment
Hi there was a post last week about stem cell transplant in Japan. I thought I had saved it but obviously not! Does anyone have a link for it please?
Hi there was a post last week about stem cell transplant in Japan. I thought I had saved it but obviously not! Does anyone have a link for it please?
Bluebell2022
in
Cure Parkinson's
1 month ago
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Mutation Levels
I have seen other discussions re bad mutations , on my regular letter to my doctor from my haematologist it states : Chronic Lymphocytic Leukemia associated with high risk variants including loss of the LEU and ATM genes. As per my normal blood results, do these have a high and low level and if so
I have seen other discussions re bad mutations , on my regular letter to my doctor from my haematologist it states : Chronic Lymphocytic Leukemia associated with high risk variants including loss of the LEU and ATM genes. As per my normal blood results, do these have a high and low level and if so
uide3095
in
CLL Support
9 months ago
Drs. Susan O'Brien and Catherine Wu Presented the Binet-Rai Medal at 20th International Workshop on Chronic Lymphocytic Leukemia
Two doctors who have spent many many hours helping the CLL community.
I FEEL SURE THAT WE ALL EXPRESS OUR MANY THANKS.
THIS IS AN AWARD THAT IS WELL DESERVED.
During this past weekend's 20th biennial International Workshop on Chronic Lymphocytic Leukemia (iwCLL), Susan M
Two doctors who have spent many many hours helping the CLL community.
I FEEL SURE THAT WE ALL EXPRESS OUR MANY THANKS.
THIS IS AN AWARD THAT IS WELL DESERVED.
During this past weekend's 20th biennial International Workshop on Chronic Lymphocytic Leukemia (iwCLL), Susan M
Kwenda
in
CLL Support
9 months ago
New member - Post ET MF (Australia)
I'm 42, married with six children, and I live in Australia. In 2013, I was diagnosed with CAL-R positive ET. I started taking aspirin and managed pretty well. After a spontaneous bleed in my right quadricep, it was discovered that I also had a genetic bleeding disorder, dysfibrinogenemia. After that
I'm 42, married with six children, and I live in Australia. In 2013, I was diagnosed with CAL-R positive ET. I started taking aspirin and managed pretty well. After a spontaneous bleed in my right quadricep, it was discovered that I also had a genetic bleeding disorder, dysfibrinogenemia. After that
Hatchie
in
MPN Voice
2 months ago
Stem cell transplant (SCT) 15 months on
I'm now 15 months after my SCT and in my my recent review my figures are improving:WBC 4.0 HB 139 Neut 2.3, lymph1.12 and platelets 106 ( highest for a couple of years). I also had my CD4 lymphocytes measured and can now come off Acyclovir and pentamidine. Hooray! I hated those nebulisers. This leaves
I'm now 15 months after my SCT and in my my recent review my figures are improving:WBC 4.0 HB 139 Neut 2.3, lymph1.12 and platelets 106 ( highest for a couple of years). I also had my CD4 lymphocytes measured and can now come off Acyclovir and pentamidine. Hooray! I hated those nebulisers. This leaves
Scaredy_cat
in
MPN Voice
2 months ago
stem cell transplant survival with MF
This link gives some figures for overall survival with or without a transplant. The headline really is the initial mortality close to the transplant is only worth risking if your MF is quite bad. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7218417/
This link gives some figures for overall survival with or without a transplant. The headline really is the initial mortality close to the transplant is only worth risking if your MF is quite bad. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7218417/
Scaredy_cat
in
MPN Voice
2 months ago
Spotlight on Chronic Lymphocytic Leukemia (CLL) May 24, 2023 Nicole Lamanna, MD- replay, slides and transcript
Spotlight on Chronic Lymphocytic Leukemia (CLL) May 24, 2023 Nicole Lamanna, MD https://www.lls.org/patient-education-webcasts/spotlight-chronic-lymphocytic-leukemia-cll https://youtu.be/6KziJk3zQ_I Topics Covered: Emerging therapies and clinical trials for CLL Managing side effects Strategies
Spotlight on Chronic Lymphocytic Leukemia (CLL) May 24, 2023 Nicole Lamanna, MD https://www.lls.org/patient-education-webcasts/spotlight-chronic-lymphocytic-leukemia-cll https://youtu.be/6KziJk3zQ_I Topics Covered: Emerging therapies and clinical trials for CLL Managing side effects Strategies
lankisterguy
Volunteer
in
CLL Support
9 months ago
LET'S TALK CLL- Patients & Doctors Discuss the Latest Live! SATURDAY, OCTOBER 14, 2023 Virtual program starts at 10am CDT 11am EDT
LIVE & IN-PERSON EVENT- LET'S TALK CLL Patients & Doctors Discuss the Latest Live! DATE: SATURDAY, OCTOBER 14, 2023 LOCATION: MD ANDERSON CANCER CENTER Virtual program begins at 10am (CT). Register here: https://us06web.zoom.us/webinar/register/5216926341361/WN_8BHNtMXZR9Gjf211Nh_lhA - We're
LIVE & IN-PERSON EVENT- LET'S TALK CLL Patients & Doctors Discuss the Latest Live! DATE: SATURDAY, OCTOBER 14, 2023 LOCATION: MD ANDERSON CANCER CENTER Virtual program begins at 10am (CT). Register here: https://us06web.zoom.us/webinar/register/5216926341361/WN_8BHNtMXZR9Gjf211Nh_lhA - We're
lankisterguy
Volunteer
in
CLL Support
9 months ago
Shingrix availability on PBS in Australia from 1 November has been confirmed
[u][i]SEE THIS REPLY [/i][/u][u]for the latest update to this post[/u]: https://healthunlocked.com/cllsupport/posts/150056558/shingrix-availability-on-pbs-in-australia-from-1-november-has-been-confirmed?responses=150067213 Earlier this year, I posted about a possible change to the PBS to make Shingrix
[u][i]SEE THIS REPLY [/i][/u][u]for the latest update to this post[/u]: https://healthunlocked.com/cllsupport/posts/150056558/shingrix-availability-on-pbs-in-australia-from-1-november-has-been-confirmed?responses=150067213 Earlier this year, I posted about a possible change to the PBS to make Shingrix
CLLerinOz
Administrator
in
CLL Support
9 months ago
The Bone-Marrow-Transplant Revolution
https://www.theatlantic.com/health/archive/2024/04/bone-marrow-transplant-mismatched-donor/678100/
https://www.theatlantic.com/health/archive/2024/04/bone-marrow-transplant-mismatched-donor/678100/
Hidden
in
CLL Support
2 months ago
Jak2/tet2 mutation
Hello this is Ben from VA! I was diagnosed with MPN last year and use Besremi every 2 weeks. I have jak2/tet2 mutations which makes me feel confused and scared since the majority of PVs only have jak2(or other so-called driver mutations). I read a lot online and it seems tet2 is not the worst thing
Hello this is Ben from VA! I was diagnosed with MPN last year and use Besremi every 2 weeks. I have jak2/tet2 mutations which makes me feel confused and scared since the majority of PVs only have jak2(or other so-called driver mutations). I read a lot online and it seems tet2 is not the worst thing
Ben2022
in
MPN Voice
11 months ago
Stem cell transplant
I haven’t posted for a while as things have gotten very complicated for me recently my partner was diagnosed with stomach cancer and around the same time I ran out of options and stem is my last shot I have held off as long as I can so my partner could have surgery and get back on his feet but my dates
I haven’t posted for a while as things have gotten very complicated for me recently my partner was diagnosed with stomach cancer and around the same time I ran out of options and stem is my last shot I have held off as long as I can so my partner could have surgery and get back on his feet but my dates
Leighcox85
in
MPN Voice
3 months ago
Platelets dropped after obinituzumab and won't rise even after transfusion 🚨
Dear all, First of all, thank you very much for all the help and care I have always found on HealthUnlocked. I had my first infusion of obinituzumab and in my case, mainly due to my nephrotic syndrome kidney problem, I had a few problems. High fevers, which are common Attacks of hiccups that last
Dear all, First of all, thank you very much for all the help and care I have always found on HealthUnlocked. I had my first infusion of obinituzumab and in my case, mainly due to my nephrotic syndrome kidney problem, I had a few problems. High fevers, which are common Attacks of hiccups that last
BMFCDRW
in
CLL Support
3 months ago
Richters Transformation
I recently informed here that after nine therapy free years since 2014 (FCR) my CLL bounced back in 10/2022 with an DLBCL and a suspicion of Richters. Biopsy and Lab tests predicted that. Therefore I was immediately treated with R-CHOP 14 CI Therapy first in Hospital one week and then within the ambulance
I recently informed here that after nine therapy free years since 2014 (FCR) my CLL bounced back in 10/2022 with an DLBCL and a suspicion of Richters. Biopsy and Lab tests predicted that. Therefore I was immediately treated with R-CHOP 14 CI Therapy first in Hospital one week and then within the ambulance
seoul1949
in
CLL Support
9 months ago
Has anyone navigated Medicare while trying to get the TPIAT?
Hi All 👋 We recently had a patient reach out to us about the TPIAT while on Medicare. Medicare covers the removal of the pancreas, but it does not cover the islet cell transplantation; the patient was quoted $70K for the islet cell transplantation. 🙁 They ask that anyone who has also navigated the
Hi All 👋 We recently had a patient reach out to us about the TPIAT while on Medicare. Medicare covers the removal of the pancreas, but it does not cover the islet cell transplantation; the patient was quoted $70K for the islet cell transplantation. 🙁 They ask that anyone who has also navigated the
Skye_MC
Administrator
in
Chronic Pancreatitis Support
10 months ago
Human stem cell transplantation for Parkinson’s disease: A systematic review
Interestinghttps://www.researchgate.net/publication/379454508_Human_stem_cell_transplantation_for_Parkinson's_disease_A_systematic_review_of_in_situ_survival_and_maturation_of_progenitors_derived_from_human_embryonic_or_induced_stem_cells_in_Parkinsonian_models
Interestinghttps://www.researchgate.net/publication/379454508_Human_stem_cell_transplantation_for_Parkinson's_disease_A_systematic_review_of_in_situ_survival_and_maturation_of_progenitors_derived_from_human_embryonic_or_induced_stem_cells_in_Parkinsonian_models
Farooqji
in
Cure Parkinson's
3 months ago
Epipen - Serious Nut Allergy
EpiPen - Serious Nut Allergy Good afternoon, My daughter got tested today at Preston Hospital, she tested positive for all types of nuts and was told she has Serious Nut Allergy which is Life Threatening without the Use of an Injectable EpiPen. My daughter was given one today at Hospital. Her Question
EpiPen - Serious Nut Allergy Good afternoon, My daughter got tested today at Preston Hospital, she tested positive for all types of nuts and was told she has Serious Nut Allergy which is Life Threatening without the Use of an Injectable EpiPen. My daughter was given one today at Hospital. Her Question
Joseph260268
in
Lung Conditions Community Forum
1 year ago
Travel and Ibrance
I was diagnosed with MBC in June, 2023. I am on Ibrance and letrozole. My medical history is complicated by having had a donor stem cell transplant in 2018 for T cell lymphoma. My immune system was compromised from that but now with Ibrance I'm not sure what to expect in terms of traveling and
I was diagnosed with MBC in June, 2023. I am on Ibrance and letrozole. My medical history is complicated by having had a donor stem cell transplant in 2018 for T cell lymphoma. My immune system was compromised from that but now with Ibrance I'm not sure what to expect in terms of traveling and
Artesa
in
SHARE Metastatic Breast Cancer
3 months ago
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