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Good news Ruxolitinib
Husband this time last year was crawling up the wall with itching all over pruritus terrible. Diagnosed eventually after 12months with JAX_2 mutation positive: PV . So July 2017 after Haematologist had tried everything possible it was decided that he would be able to have Ruxolitinib!!! Now take 15mg
Husband this time last year was crawling up the wall with itching all over pruritus terrible. Diagnosed eventually after 12months with JAX_2 mutation positive: PV . So July 2017 after Haematologist had tried everything possible it was decided that he would be able to have Ruxolitinib!!! Now take 15mg
waddles22
in
MPN Voice
6 years ago
Venetoclax – a 30-year story. Q & A with clinician scientist Dr Mary Ann Anderson.
[i]'At the
Leukaemia
Foundation-hosted New Directions in
Leukaemia
Research (NDLR) conference in Brisbane in March, Dr Mary Ann Anderson, a clinician scientist at the Walter & Eliza Hall Institute of Medical Research (WEHI), shared a story about the development of venetoclax (Venclexta TM).
[i]'At the
Leukaemia
Foundation-hosted New Directions in
Leukaemia
Research (NDLR) conference in Brisbane in March, Dr Mary Ann Anderson, a clinician scientist at the Walter & Eliza Hall Institute of Medical Research (WEHI), shared a story about the development of venetoclax (Venclexta TM).
AussieNeil
Administrator
in
CLL Support
6 years ago
Expert Reviews Current State of CLL Treatment, Dr. Brander, Duke U
Recent developments in the treatment of patients with chronic lymphocytic leukemia (CLL) have created new, unanswered questions and left clinicians scrambling to keep up with the pace of change, said Danielle Brander, MD. However, she said that is a good problem to have. “For patients who I have sitting
Recent developments in the treatment of patients with chronic lymphocytic leukemia (CLL) have created new, unanswered questions and left clinicians scrambling to keep up with the pace of change, said Danielle Brander, MD. However, she said that is a good problem to have. “For patients who I have sitting
Cllcanada
Top Poster CURE Hero
in
CLL Support
6 years ago
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CLL Society Alert July 24, 2018 - Video Dr. Kipps on Cirmtuzumab - Paid Survey for USA CLL patients - Local support group meetings
http://campaign.r20.constantcontact.com/render?m=1120967015548&ca=2bc67386-01ab-40da-a13a-283e8f894e92 Hello, Friends and Supporters of the CLL Society. At every opportunity, we strive to bring you the latest announcements for upcoming Support Group meetings, special events, and other learning resources
http://campaign.r20.constantcontact.com/render?m=1120967015548&ca=2bc67386-01ab-40da-a13a-283e8f894e92 Hello, Friends and Supporters of the CLL Society. At every opportunity, we strive to bring you the latest announcements for upcoming Support Group meetings, special events, and other learning resources
lankisterguy
Volunteer
in
CLL Support
6 years ago
Colonisation of pseudomonas non CF bronchiectasis
I have been reading up about garlic oil and how the ingredient ajoene can disrupt the biofilm of the mucoid pseudomonas bacteria. i am interested in nebulising garlic oil but i am not sure if it's safe or how to go about it. Has anyone else heard about the wonders of garlic in the killing of mucoid
I have been reading up about garlic oil and how the ingredient ajoene can disrupt the biofilm of the mucoid pseudomonas bacteria. i am interested in nebulising garlic oil but i am not sure if it's safe or how to go about it. Has anyone else heard about the wonders of garlic in the killing of mucoid
skj_
in
Lung Conditions Community Forum
6 years ago
Secondary cancer
Wrote a week ago about secondary cancer and had a diagnostic mammogram and ultrasound now I wait to have a needle biopsy on my breast. I am3 months into my treatment with Ibrutinib and Venetoclax with amazing results. I am hoping this lesion is not cancer and I can continue my trial. Very concerned
Wrote a week ago about secondary cancer and had a diagnostic mammogram and ultrasound now I wait to have a needle biopsy on my breast. I am3 months into my treatment with Ibrutinib and Venetoclax with amazing results. I am hoping this lesion is not cancer and I can continue my trial. Very concerned
Ninagram
in
CLL Support
6 years ago
Miltion
Hello: I am a 64 year old male. I was diagnosed with Non-Hodgkin's Lymphoma cll in August of 2017. My doctor put me on Improvica. I had some pretty nasty side effects for the first 5 months. I have not had any since early January. My blood work is always good. How long can you live with this? Is there
Hello: I am a 64 year old male. I was diagnosed with Non-Hodgkin's Lymphoma cll in August of 2017. My doctor put me on Improvica. I had some pretty nasty side effects for the first 5 months. I have not had any since early January. My blood work is always good. How long can you live with this? Is there
larry54
in
CLL Support
6 years ago
Venetoclax/Ibrutinib update
Hi I wanted to follow up with everyone. I started the V&I clinical trial Oct 2017. When i started my cancer was at 30% infiltration in my bone marrow. I just recieved my last BMB results and i am now at 0.01%. Im in remission!!!!! Dr. Thompson at MDA says my next BMB results should show MRD!!! If you
Hi I wanted to follow up with everyone. I started the V&I clinical trial Oct 2017. When i started my cancer was at 30% infiltration in my bone marrow. I just recieved my last BMB results and i am now at 0.01%. Im in remission!!!!! Dr. Thompson at MDA says my next BMB results should show MRD!!! If you
BCTexas
in
CLL Support
6 years ago
Recurrence of nodes in treatment of CML
I am on imatnib for last 4 months for treatment of CML. But for last few days am feeling lymph nodes are back in my neck.my recent cbc has no anomailies .I am not able to predict wether they are actually lymph nodes or my fear.sometimes even i dont feel them .Plz advise me how serious is this or what
I am on imatnib for last 4 months for treatment of CML. But for last few days am feeling lymph nodes are back in my neck.my recent cbc has no anomailies .I am not able to predict wether they are actually lymph nodes or my fear.sometimes even i dont feel them .Plz advise me how serious is this or what
Prakash2512
in
CLL Support
6 years ago
Deciding on CLL Therapy and When to Treat- ONCLive Video discussion Drs. Wierda, Lamanna, Ma, Davids, Coutre
This has been discussed often- when to start treatment. There are many exceptions and special conditions, but the only agreement is not to treat on White Blood Count. https://youtu.be/A66CR1ubb-c Transcript: William G. Wierda, MD, PhD: So, let’s move on to treatment. We’ll start the discussion,
This has been discussed often- when to start treatment. There are many exceptions and special conditions, but the only agreement is not to treat on White Blood Count. https://youtu.be/A66CR1ubb-c Transcript: William G. Wierda, MD, PhD: So, let’s move on to treatment. We’ll start the discussion,
lankisterguy
Volunteer
in
CLL Support
6 years ago
Rituxan, taken alone
I was on Imbruvica for 6 months but had to stop it because of afib and flutter, a common side effect of the drug. I have heart issues, including fast heartbeat and ventricular tachycardia. I am over 80 years old. My oncologist is recommending a Rituxan drip. He is hesitant to use some of the newer
I was on Imbruvica for 6 months but had to stop it because of afib and flutter, a common side effect of the drug. I have heart issues, including fast heartbeat and ventricular tachycardia. I am over 80 years old. My oncologist is recommending a Rituxan drip. He is hesitant to use some of the newer
umpireman
in
CLL Support
6 years ago
A message to you all from Dave - Manofmendip
I Just had a chat with Dave, at some point he will hopefully come back as an Administrator that door is left wide open for him, he asked me to tell you this: 'Please tell them that I took time out when Liza, my partner was in hospital for six months being treated for
Leukaemia
.
I Just had a chat with Dave, at some point he will hopefully come back as an Administrator that door is left wide open for him, he asked me to tell you this: 'Please tell them that I took time out when Liza, my partner was in hospital for six months being treated for
Leukaemia
.
MaryF
Administrator
in
Hughes Syndrome APS Forum
6 years ago
Our new Living well series
It can be downloaded on the
Leukaemia
Care website and you can order free copies too. Later this year, we will launch Living well with CML, Living well with CLL and Living well with ALL. Are there any burning questions or topics you'd like explored in those booklets?
It can be downloaded on the
Leukaemia
Care website and you can order free copies too. Later this year, we will launch Living well with CML, Living well with CLL and Living well with ALL. Are there any burning questions or topics you'd like explored in those booklets?
NicoleLeukaemiaCare
Administrator
in
Leukaemia CARE
6 years ago
Guidelines Myeloproliferative Neoplasms and Articles of Interest
Hello I have listed some links for MPN articles of interest. Kind regards Anna The 2016 revision to the World Health Organization (WHO) classification of myeloid neoplasms and acute leukemia https://www.researchgate.net/publication/301276550_The_2016_revision_to_the_World_Health_Organization_WHO_classification_of_myeloid_neoplasms_and_acute_leukemia
Hello I have listed some links for MPN articles of interest. Kind regards Anna The 2016 revision to the World Health Organization (WHO) classification of myeloid neoplasms and acute leukemia https://www.researchgate.net/publication/301276550_The_2016_revision_to_the_World_Health_Organization_WHO_classification_of_myeloid_neoplasms_and_acute_leukemia
Hidden
in
MPN Voice
6 years ago
11 Q deletion? Mutated or unmutated?
I asked our CLL doctor if my husband with 11 q deletion was unmutated which is what I had assumed, but he said he was mutated. I am confused. He also tested positive for ZAP 70. I got his FISH results, but that did not clear this up. Help??
I asked our CLL doctor if my husband with 11 q deletion was unmutated which is what I had assumed, but he said he was mutated. I am confused. He also tested positive for ZAP 70. I got his FISH results, but that did not clear this up. Help??
kathymac52
in
CLL Support
6 years ago
Concern about another cancer
On trial of Ibrutinib and venetoclax for 3 months. Very concerned because I got called to have a diagnostic mammogram and ultrasound after my routine mammogram. Is it common to have another cancer with Cll. Thank you
On trial of Ibrutinib and venetoclax for 3 months. Very concerned because I got called to have a diagnostic mammogram and ultrasound after my routine mammogram. Is it common to have another cancer with Cll. Thank you
Ninagram
in
CLL Support
6 years ago
Night sweats
Since diagnosis and commencing on hydroxycarbamide I have suffered from nightsweats. I would wake in the night with my pillow soaking wet and my hair like I'd just got out of the shower. This has been ongoing since 2008. A couple of weeks ago I invested in a new mattress and pillows that have a gel layer
Since diagnosis and commencing on hydroxycarbamide I have suffered from nightsweats. I would wake in the night with my pillow soaking wet and my hair like I'd just got out of the shower. This has been ongoing since 2008. A couple of weeks ago I invested in a new mattress and pillows that have a gel layer
Val_P
in
MPN Voice
6 years ago
New 17P- w questions about EGCG and normal 2nd 17th chromosome
Hello, Thank you all for your insightful posts and support! I'm relatively new to this forum- diagnosed in April 2018 with 17P- CLL on abnormal bloodwork. Initially saw my internist, then a private hematologist. Subsequently had CT and new bloodwork at UC Health (Colorado) and on their recommendation
Hello, Thank you all for your insightful posts and support! I'm relatively new to this forum- diagnosed in April 2018 with 17P- CLL on abnormal bloodwork. Initially saw my internist, then a private hematologist. Subsequently had CT and new bloodwork at UC Health (Colorado) and on their recommendation
TJG_CLL17P-
in
CLL Support
6 years ago
10 years ago today I received my allogeneic hematopoietic stem cell transplant (HSCT) for my CLL
Hi, I just posted a very brief blog update on my 10 year anniversary of my first radical move to save my life. You can read it about here: https://cllsociety.org/2018/07/10-years-ago-today-i-received-my-allogeneic-hematopoietic-stem-cell-transplant-hsct-for-my-cll-chronic-lymphocytic-leukemia/ Since
Hi, I just posted a very brief blog update on my 10 year anniversary of my first radical move to save my life. You can read it about here: https://cllsociety.org/2018/07/10-years-ago-today-i-received-my-allogeneic-hematopoietic-stem-cell-transplant-hsct-for-my-cll-chronic-lymphocytic-leukemia/ Since
bkoffman
CLL CURE Hero
in
CLL Support
6 years ago
Financial help from LLS for US patients
Hi, Got this today from friends at LLS These funds open and close quickly at time, so if you qualify and have the need, move fast. This is for Medicare and private insurance. Very good news. See below for details. Stay strong. We are all in this together. Brian http://cllsociety.org Dear Health Care
Hi, Got this today from friends at LLS These funds open and close quickly at time, so if you qualify and have the need, move fast. This is for Medicare and private insurance. Very good news. See below for details. Stay strong. We are all in this together. Brian http://cllsociety.org Dear Health Care
bkoffman
CLL CURE Hero
in
CLL Support
6 years ago
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