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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
Sugar and cancer, in particular Chronic Lymphocytic Leukaemia (CLL/SLL) – what you need to know
We've had a few questions lately about whether we should avoid sugar after a diagnosis of CLL, from members concerned about the influence of sugar in their diet on their CLL progression and of course because of the simplistic claim that sugar feeds cancer cells, so starving ourselves of sugar will starve
We've had a few questions lately about whether we should avoid sugar after a diagnosis of CLL, from members concerned about the influence of sugar in their diet on their CLL progression and of course because of the simplistic claim that sugar feeds cancer cells, so starving ourselves of sugar will starve
AussieNeil
Partner
in
CLL Support
5 years ago
Association of gene mutations with time‐to‐first treatment in 384 treatment‐naive chronic lymphocytic leukaemia patients
First published: 26 June 2019 in BJH - full paper behind a paywall unfortunately This study correlated somatic mutation results and known prognostic factors with time‐to‐first treatment (TTFT) in 384 treatment‐naïve (TN) chronic lymphocytic
leukaemia
(CLL) patients to help determine disease‐specific
First published: 26 June 2019 in BJH - full paper behind a paywall unfortunately This study correlated somatic mutation results and known prognostic factors with time‐to‐first treatment (TTFT) in 384 treatment‐naïve (TN) chronic lymphocytic
leukaemia
(CLL) patients to help determine disease‐specific
Jm954
Administrator
in
CLL Support
5 years ago
Growth dynamics in naturally progressing chronic lymphocytic leukaemia
[i]"We used the indolent growth dynamics of chronic lymphocytic
leukaemia
(CLL) to analyse the growth rates and corresponding genomic patterns of
leukaemia
cells from 107 patients with CLL, spanning decades-long disease courses.
[i]"We used the indolent growth dynamics of chronic lymphocytic
leukaemia
(CLL) to analyse the growth rates and corresponding genomic patterns of
leukaemia
cells from 107 patients with CLL, spanning decades-long disease courses.
Jm954
Administrator
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
Nitric-Oxide-Donating NSAIDs.
In studies in vitro, NO-ASA inhibits the growth of colon, pancreatic, prostate, lung, skin,
leukaemia
and breast cancer cells, and is up to 6000-fold more potent than traditional ASA."
In studies in vitro, NO-ASA inhibits the growth of colon, pancreatic, prostate, lung, skin,
leukaemia
and breast cancer cells, and is up to 6000-fold more potent than traditional ASA."
pjoshea13
in
Advanced Prostate Cancer
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
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
Newbie to mpd/et
Hi I've recently been diagnosed with mpd et and looking to learn more about it and how it could affect my life,lifestyle and longevity ,also as I'm on hydroxacarbomide was wondering if anyone on here their mpd/et had turned into
leukaemia
because of the medication used?
Hi I've recently been diagnosed with mpd et and looking to learn more about it and how it could affect my life,lifestyle and longevity ,also as I'm on hydroxacarbomide was wondering if anyone on here their mpd/et had turned into
leukaemia
because of the medication used?
Jackybuckley
in
MPN Voice
5 years ago
The Summer edition of Leukaemia Matters is now on its way to doorsteps and inboxes!
Read more about the activities of
Leukaemia
Care and patients over the past months and plans moving forward here: https://www.leukaemiacare.org.uk/wp-content/uploads/
Leukaemia
-Matters-Summer-2019-Web-Version.pdf From the Chair: [i]Here at
Leukaemia
Care, we’re getting prepared for Blood
Read more about the activities of
Leukaemia
Care and patients over the past months and plans moving forward here: https://www.leukaemiacare.org.uk/wp-content/uploads/
Leukaemia
-Matters-Summer-2019-Web-Version.pdf From the Chair: [i]Here at
Leukaemia
Care, we’re getting prepared for Blood
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
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