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Time for a change!
After 20 years with myeloma and being well controlled with Lenalidamide for the last 5 years things have changed suddenly. A sudden dip in blood results necessitated a bone marrow and low and behold I now also have CLL. I have just started on Obinutuzomab and will add chlorambucil when I return from
After 20 years with myeloma and being well controlled with Lenalidamide for the last 5 years things have changed suddenly. A sudden dip in blood results necessitated a bone marrow and low and behold I now also have CLL. I have just started on Obinutuzomab and will add chlorambucil when I return from
Paul_Cabban
in
Leukaemia Support
5 years ago
MPN Voice needs your feedback to support an application to the Scottish Medicines Consortium (SMC)
We
URGENTLY
need your help and feedback to support an application to the Scottish Medicines Consortium (SMC) for the prescribing of Ruxolitinib (Jakavi) to PV patients living in Scotland. But we want to hear from you if you have PV regardless of where you live or whether you have had Ruxolitinib
We
URGENTLY
need your help and feedback to support an application to the Scottish Medicines Consortium (SMC) for the prescribing of Ruxolitinib (Jakavi) to PV patients living in Scotland. But we want to hear from you if you have PV regardless of where you live or whether you have had Ruxolitinib
Mazcd
MPNVoice
in
MPN Voice
5 years ago
Patient Power Video updates on Blood Testing and New Treatment updates
Patient Power email here: https://www.patientpower.info/index.cfm?objectid=0F37AC70-C38E-11E9-9C33000D3A30C4F8 - Includes video updates from two of my favorite doctors that can explain complex subjects using understandable language. Dr. Susan LeClair and Dr. Nicole Lamanna. - https://www.patientpower.info
Patient Power email here: https://www.patientpower.info/index.cfm?objectid=0F37AC70-C38E-11E9-9C33000D3A30C4F8 - Includes video updates from two of my favorite doctors that can explain complex subjects using understandable language. Dr. Susan LeClair and Dr. Nicole Lamanna. - https://www.patientpower.info
lankisterguy
Volunteer
in
CLL Support
5 years ago
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Worsening symptoms of myelofibrosis
Hi Can anyone tell me the worsening symptoms of myleofibrosis as I am very concerned about my partner who has post ET myelofibrosis and since diagnosis has become more and more tired. He is on hydro (fluctuating dose) and Rux along with other medications for a heart condition and portal hypertension
Hi Can anyone tell me the worsening symptoms of myleofibrosis as I am very concerned about my partner who has post ET myelofibrosis and since diagnosis has become more and more tired. He is on hydro (fluctuating dose) and Rux along with other medications for a heart condition and portal hypertension
Goldfish212
in
MPN Voice
5 years ago
Relapsing after remission
I've been in remission for about two years now. Just came from a routine 6 month check-up. My Hematologist noticed that my platelets have dropped below normal and that my absolute lymphocytes are above normal. I will checked again in three months. Has anyone relapsed from remission? If so, did they
I've been in remission for about two years now. Just came from a routine 6 month check-up. My Hematologist noticed that my platelets have dropped below normal and that my absolute lymphocytes are above normal. I will checked again in three months. Has anyone relapsed from remission? If so, did they
dianejoyce
in
CLL Support
5 years ago
2nd Update on Possible Richters Transformation
The upside is I don’t have RT, but I did pick up some more high risk markers in addition to : 11q and unmutated. I learned in July the results of the DNA sequencing study. I picked up TP53, Notch1, ATM and few other ones that predispose me to head and neck cancer and cognitive decline. They did not
The upside is I don’t have RT, but I did pick up some more high risk markers in addition to : 11q and unmutated. I learned in July the results of the DNA sequencing study. I picked up TP53, Notch1, ATM and few other ones that predispose me to head and neck cancer and cognitive decline. They did not
ReneeSusan
in
CLL Support
5 years ago
War in the blood - BBC iPlayer
The documentary tells the story of Graham and Mahmoud, two individuals with
acute
lymphoblastic
leukaemia
who opted to be a part of two CAR-T therapy trials. For Graham, he was going to receive CAR-T cells donated from his brother while Mahmoud received his own cells.
The documentary tells the story of Graham and Mahmoud, two individuals with
acute
lymphoblastic
leukaemia
who opted to be a part of two CAR-T therapy trials. For Graham, he was going to receive CAR-T cells donated from his brother while Mahmoud received his own cells.
NicoleLeukaemiaCare
in
Leukaemia Support
5 years ago
Saga continued.......
Well, Neuro didn't have great news but has decided to get me to have an ambulatory EMG over 3 days. I will stop anti seizure meds 1 week before and *maybe* pick up an anomaly during the 3 days I'm wired up. Still off driving for 6 months and has strongly advised against my planned trip to KL in 4
Well, Neuro didn't have great news but has decided to get me to have an ambulatory EMG over 3 days. I will stop anti seizure meds 1 week before and *maybe* pick up an anomaly during the 3 days I'm wired up. Still off driving for 6 months and has strongly advised against my planned trip to KL in 4
Ozchick
in
Hughes Syndrome APS Forum
5 years ago
Tiredness and essential thrombocythemia
Hi. Hoping for some advice and pointers. My mother has ET and is on chemo pills. All seems to be going well except for her being constantly tired. She is 77 but otherwise fit and well and has always been active and walking dogs etc. The tiredness gets her down and depressed. Her consultants just
Hi. Hoping for some advice and pointers. My mother has ET and is on chemo pills. All seems to be going well except for her being constantly tired. She is 77 but otherwise fit and well and has always been active and walking dogs etc. The tiredness gets her down and depressed. Her consultants just
Monkobutlers
in
MPN Voice
5 years ago
Have you been diagnosed with acute leukaemia? Share your experience in a global quality of life survey and help drive improvements in Care.
ALAN - The
Acute
Leukaemia
Advocates Network is an international group of patient advocates and charities supporting patients in their own countries who live with an
acute
leukaemia
diagnosis.
ALAN - The
Acute
Leukaemia
Advocates Network is an international group of patient advocates and charities supporting patients in their own countries who live with an
acute
leukaemia
diagnosis.
HAIRBEAR_UK
in
Leukaemia Support
5 years ago
Scottish Medicines Consortium approves Venetoclax + Rituximab Treatment for relapsed/refractory CLL
Venetoclax has been approved by the Scottish Medicines Consortium (SMC) for treating adults with CLL,who have already tried at least one treatment, in combination with another cancer medicine called rituximab. This is in line with the NICE decision for NHS England. CLLSA submitted evidence to the
Venetoclax has been approved by the Scottish Medicines Consortium (SMC) for treating adults with CLL,who have already tried at least one treatment, in combination with another cancer medicine called rituximab. This is in line with the NICE decision for NHS England. CLLSA submitted evidence to the
Jm954
Administrator
in
CLL Support
5 years ago
My CLL and CAR-T story
Hi, Many of you may know my story but if you want to hear me tell it when I am the one being interviewed at ASH by my good friend Giora Sharf, a strong and experienced blood cancer advocate and CML patient, you can watch here: https://cllsociety.org/2019/08/ash-2018-interview-of-dr-koffman-by-giora-sharf
Hi, Many of you may know my story but if you want to hear me tell it when I am the one being interviewed at ASH by my good friend Giora Sharf, a strong and experienced blood cancer advocate and CML patient, you can watch here: https://cllsociety.org/2019/08/ash-2018-interview-of-dr-koffman-by-giora-sharf
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
Greetings from Chaya Venkat <chaya@clltopics.net>
Greetings: It has been a long time and I hope this email still finds some of you and you still recognize my name. Please allow me to impose on you just a tad – this will not take long. As you knew, we planned to keep all three of our websites (CLL Topics flagship site, Updates and Harvey’s Journal
Greetings: It has been a long time and I hope this email still finds some of you and you still recognize my name. Please allow me to impose on you just a tad – this will not take long. As you knew, we planned to keep all three of our websites (CLL Topics flagship site, Updates and Harvey’s Journal
lankisterguy
Volunteer
in
CLL Support
5 years ago
CLL Society New York City Support Group Meeting Sunday August 18, 2019 3:00pm
CLL PATIENT AND CAREGIVER SUPPORT GROUP New York City -- CLL Patient Support Group The CLL Society invites you to our support group sponsored by the CLL Society Support & Education Network. Please join us August 18 at 3:00pm. Emilee Thomas PA at Weill Cornell Medicine will be our guest. She will join
CLL PATIENT AND CAREGIVER SUPPORT GROUP New York City -- CLL Patient Support Group The CLL Society invites you to our support group sponsored by the CLL Society Support & Education Network. Please join us August 18 at 3:00pm. Emilee Thomas PA at Weill Cornell Medicine will be our guest. She will join
lankisterguy
Volunteer
in
CLL Support
5 years ago
A phase 2 study of ruxolitinib in combination with azacitidine in patients with myelofibrosis
Sounds very encouraging http://www.bloodjournal.org/content/132/16/1664
Sounds very encouraging http://www.bloodjournal.org/content/132/16/1664
Paul123456
in
MPN Voice
5 years ago
Major breakthrough in the treatment of leukemia
[i]Bone marrow aspirate showing
Acute
Myeloid
Leukaemia
(AML). Several blasts have Auer rods. Wikipedia [/i] [i] [/i] This article out of the University of Montreal seems to hold some promise for the treatment of AML.
[i]Bone marrow aspirate showing
Acute
Myeloid
Leukaemia
(AML). Several blasts have Auer rods. Wikipedia [/i] [i] [/i] This article out of the University of Montreal seems to hold some promise for the treatment of AML.
socrates_8
in
MPN Voice
5 years ago
Combining Pegasys and ruxolitinib (Jakafi) for MF: has anyone tried it?
Hi. I'm having a grim time at present, as the increased risk of aggressive skin cancers triggered by the ruxolitinib I’m taking ( was inc to 20mg bd at end December to help the fatigue ( it didn’t) ( now back to 15mg bd) haunts me. I’ve already had one SCC excised from my face, as I’d posted, and a
Hi. I'm having a grim time at present, as the increased risk of aggressive skin cancers triggered by the ruxolitinib I’m taking ( was inc to 20mg bd at end December to help the fatigue ( it didn’t) ( now back to 15mg bd) haunts me. I’ve already had one SCC excised from my face, as I’d posted, and a
Rachelthepotter
in
MPN Voice
5 years ago
Results cml myeloproliferative
Hi anyone give any advice Had results of jak2 test as unequivocal, doctor seemed this was good news , still further testing raised iron and platelets Another jak2 test scheduled in six months time . Just not sure how to interpret the findings Many thanks
Hi anyone give any advice Had results of jak2 test as unequivocal, doctor seemed this was good news , still further testing raised iron and platelets Another jak2 test scheduled in six months time . Just not sure how to interpret the findings Many thanks
JDHD1
in
Leukaemia Support
5 years ago
Extreme fatigue
Hi I may have questioned this before at an earlier time but it is still a big concern. My partner has post ET myelofibrosis. (ET for 5 years, diagnosed with myelofibrosis in April this year) He was taking hydroxycarbamide (not sure if I have spelt this right) for his ET and was started on Rux for
Hi I may have questioned this before at an earlier time but it is still a big concern. My partner has post ET myelofibrosis. (ET for 5 years, diagnosed with myelofibrosis in April this year) He was taking hydroxycarbamide (not sure if I have spelt this right) for his ET and was started on Rux for
Goldfish212
in
MPN Voice
5 years ago
CLL with with WBC over 100,000
This is my first post. I was diagnosed with small B-cell CLL in 2009, at the Cleveland Clinic. The doctor thought he was reassuring me by saying, "I have seen patients live ten years with CLL." I have no symptoms at all but in the last 12 months, my WBC has gone from 12,000 to 101,900, with a jump
This is my first post. I was diagnosed with small B-cell CLL in 2009, at the Cleveland Clinic. The doctor thought he was reassuring me by saying, "I have seen patients live ten years with CLL." I have no symptoms at all but in the last 12 months, my WBC has gone from 12,000 to 101,900, with a jump
Saber21
in
CLL Support
5 years ago
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