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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
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Anyone turn down a stem cell transplant?
I have post ET MF. Currently I'm on Rux and getting monthly cycles of 5 aza. I don't need transfusions. Day to day I feel pretty good and can do most of what I want. The SCT was recommended because of the risk of progression to AML. I'm finding the decision making to get the SCT very difficult. My
I have post ET MF. Currently I'm on Rux and getting monthly cycles of 5 aza. I don't need transfusions. Day to day I feel pretty good and can do most of what I want. The SCT was recommended because of the risk of progression to AML. I'm finding the decision making to get the SCT very difficult. My
LongETinUS
in
MPN Voice
2 months ago
Keeping track of how you are feeling
When living with cancer, knowing what impact the disease is having on a your life is essential if you are to receive the best care. Your Health Companion is a free specialist app specifically designed for people who have been diagnosed with Lung Cancer. It is much like a private digital diary, that
When living with cancer, knowing what impact the disease is having on a your life is essential if you are to receive the best care. Your Health Companion is a free specialist app specifically designed for people who have been diagnosed with Lung Cancer. It is much like a private digital diary, that
YourHealthCompanion
in
The Roy Castle Lung Cancer Foundation
11 months ago
On another subject …
Inspired bya post on another site I’d like to ask if anyone has high risk mutations and has NOT had a stem cell transplant and has NOT progressed to leukaemia? On the other site there were a few who had had MF for quite few years but with treatment were doing ok, and weren’t having transplants, for
Inspired bya post on another site I’d like to ask if anyone has high risk mutations and has NOT had a stem cell transplant and has NOT progressed to leukaemia? On the other site there were a few who had had MF for quite few years but with treatment were doing ok, and weren’t having transplants, for
lizzziep
in
MPN Voice
2 months ago
CYSTOSCOPY NEGATIVE August 2023
Hey Ladies and Gents. The urologist/oncologist says we can stop the monthly chemo infusions since my urinary bladder looks free of any neoplasm. And next April (2024), if it holds, I’ll be cancer free for three years and can get back on the lung transplant list. “Let your last thinks all be thanks
Hey Ladies and Gents. The urologist/oncologist says we can stop the monthly chemo infusions since my urinary bladder looks free of any neoplasm. And next April (2024), if it holds, I’ll be cancer free for three years and can get back on the lung transplant list. “Let your last thinks all be thanks
Sharp5Flat13
in
Lung Conditions Community Forum
11 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
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
Please join us Tuesday, August 15th, for our Living Room Discussion on “The New Age of Small Cell Lung Cancer: Advancements Bring New Hope”
Hello, Please join us in our San Carlos office Tuesday August 15th in person or if you don’t live in the area, you can also always join us virtually on GO2's YouTube Live channel. Our program topic will be The New Age of Small Cell Lung Cancer: Advancements Bring New Hope. Our guest speaker is Jacob
Hello, Please join us in our San Carlos office Tuesday August 15th in person or if you don’t live in the area, you can also always join us virtually on GO2's YouTube Live channel. Our program topic will be The New Age of Small Cell Lung Cancer: Advancements Bring New Hope. Our guest speaker is Jacob
Michelezeh
Partner
in
Lung Cancer Support
11 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
Momelotinib for Myelofibrosis
Hi, I have been suffering from primary MF for 9 years and have been on Ruxolitinib. However recently I was advised that Ruxolitinib is no longer effectively managing my MF. My platelets and Hb are low and my spleen has enlarged again. My consultant is trying to get me approved for Momelotinib. She
Hi, I have been suffering from primary MF for 9 years and have been on Ruxolitinib. However recently I was advised that Ruxolitinib is no longer effectively managing my MF. My platelets and Hb are low and my spleen has enlarged again. My consultant is trying to get me approved for Momelotinib. She
Cazbolac
in
MPN Voice
3 months ago
*****SUPPORT GROUPS!*****
The next round of Roy Castle online support groups with start at the beginning of September. The groups take place online over Zoom and each last for one hour and are hosted by a trained facilitator. The groups are a great way to get support from your peers, share and recieve information and make connections
The next round of Roy Castle online support groups with start at the beginning of September. The groups take place online over Zoom and each last for one hour and are hosted by a trained facilitator. The groups are a great way to get support from your peers, share and recieve information and make connections
ConnectRoyCastle
Administrator
in
The Roy Castle Lung Cancer Foundation
11 months 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
stem cell for et?
Would stem cell transplant be an option for ET? I cannot take the Hydrea or Anagralide. Thanks for your feed back
Would stem cell transplant be an option for ET? I cannot take the Hydrea or Anagralide. Thanks for your feed back
Preacherswife
in
MPN Voice
3 months ago
AXSL1 gene mutation
Hello Everyone, I have pmf-MF with JAK2 mutation and have been taking Rux since the end of 2018. Currently, Rux is took in combination with interferon. From the biopsy and blood routine, I have now reversed to PV (Hemoglobin has significantly improved, and the size of spleen has also shrunk a lot, although
Hello Everyone, I have pmf-MF with JAK2 mutation and have been taking Rux since the end of 2018. Currently, Rux is took in combination with interferon. From the biopsy and blood routine, I have now reversed to PV (Hemoglobin has significantly improved, and the size of spleen has also shrunk a lot, although
merlisa
in
MPN Voice
3 months ago
SCT journey update No.2
Hi all, following on from my last post, have just heard from my clinical nurse that they have found three very good donor matches on the registers!! Have been somewhat impatient waiting but as this situation is so new and different for everyone, has been difficult to gauge what is right or wrong. Anyway
Hi all, following on from my last post, have just heard from my clinical nurse that they have found three very good donor matches on the registers!! Have been somewhat impatient waiting but as this situation is so new and different for everyone, has been difficult to gauge what is right or wrong. Anyway
LFCLove
in
MPN Voice
3 months ago
Still on hold for stem cell transplant
David has now completed 3 cycles of Vidaza. He had a bone marrow biopsy several weeks ago. At first we thought the results were good, that his cancer cells had been reduced sufficiently to proceed with transplant. After our local oncologist spoke to the transplant specialist at Mayo, we received word
David has now completed 3 cycles of Vidaza. He had a bone marrow biopsy several weeks ago. At first we thought the results were good, that his cancer cells had been reduced sufficiently to proceed with transplant. After our local oncologist spoke to the transplant specialist at Mayo, we received word
dwolden
in
CLL Support
3 months ago
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