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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
CLL
Is this the right group for someone with Chronic
Lymphocytic
Leukemia
?
Is this the right group for someone with Chronic
Lymphocytic
Leukemia
?
mikec11
in
Leukaemia 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
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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
CAR T cell Therapy news
From Science Daily "Researchers say a patient treated for chronic
lymphocytic
leukemia
(CLL) in 2013 went into remission because of a single CAR T cell and the cells it produced as it multiplied, and has stayed cancer free in the five years since, with CAR T cells still present in his immune system."
From Science Daily "Researchers say a patient treated for chronic
lymphocytic
leukemia
(CLL) in 2013 went into remission because of a single CAR T cell and the cells it produced as it multiplied, and has stayed cancer free in the five years since, with CAR T cells still present in his immune system."
Shar0n
Volunteer
in
Non Hodgkin's Lymphoma Friends
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
ASH 2017: Dr. Richard Furman on the importance of MCL-1 in CLL (chronic lymphocytic leukemia)
Just watched a video on MCL-1 and thought our group might be interested (if not already aware!). From the CLL Society website: As good as venetoclax is as a single agent, there are now many studies that show even more remarkable responses occur when it is used in combination with ibrutinib or rituximab
Just watched a video on MCL-1 and thought our group might be interested (if not already aware!). From the CLL Society website: As good as venetoclax is as a single agent, there are now many studies that show even more remarkable responses occur when it is used in combination with ibrutinib or rituximab
hsouter
in
CLL Support
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
HRT
Hi - I've just been to see the GP about HRT (I'm 50 and having a troublesome time with perimenopause). She checked her medicine book and there were no contraindications for leukaemia but just wondered if anyone else had any knowledge or experience? I've always been someone who said I'd never have it
Hi - I've just been to see the GP about HRT (I'm 50 and having a troublesome time with perimenopause). She checked her medicine book and there were no contraindications for leukaemia but just wondered if anyone else had any knowledge or experience? I've always been someone who said I'd never have it
emmieb-UK
in
Leukaemia Support
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
Managing the Complications of Chronic Lymphocytic Leukemia (CLL) Online Program by The CancerCare Education Department (USA)
We appreciate your participation in Managing the Complications of Chronic
Lymphocytic
Leukemia
(CLL), which took place on May 17. We hope you found this workshop informative and look forward to your feedback.
We appreciate your participation in Managing the Complications of Chronic
Lymphocytic
Leukemia
(CLL), which took place on May 17. We hope you found this workshop informative and look forward to your feedback.
lankisterguy
Volunteer
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
Dr. Wiestner on Combos and fixed duration ibrutinib (he doesn't like the idea) and a webinar with Dr. Byrd and me
Hi everyone, Dr. Wiestner always has a fresh perspective on CLL treatment, and my interview at ASH was no exception. I+V in the CAPTIVATE trial is looking very potent and quite safe and the data from EHA was amazing. On Aug 15, at 2 PM ET, Dr. Byrd and I will be doing an innovative free webinar on CLL
Hi everyone, Dr. Wiestner always has a fresh perspective on CLL treatment, and my interview at ASH was no exception. I+V in the CAPTIVATE trial is looking very potent and quite safe and the data from EHA was amazing. On Aug 15, at 2 PM ET, Dr. Byrd and I will be doing an innovative free webinar on CLL
bkoffman
CLL CURE Hero
in
CLL Support
6 years ago
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