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CLL and now very elevated Monocytes
I am under treatment for CLL using Venetoclax. It has been going well and my lymphocytes are controlled with a minimal dosage of Venetoclax of 50 mg.I just had labs yesterday and in 3 weeks my monocytes shot p from 5% to 15% and absolute count from. 08 to over 1000. I am so concerned I am developing
I am under treatment for CLL using Venetoclax. It has been going well and my lymphocytes are controlled with a minimal dosage of Venetoclax of 50 mg.I just had labs yesterday and in 3 weeks my monocytes shot p from 5% to 15% and absolute count from. 08 to over 1000. I am so concerned I am developing
ralphfelo
in
CLL Support
6 months ago
Zanubrutinib or O&V
The CLL specialist that we are seeing is giving my husband the choice between O&V and Zanubrutinib. We are trying to make the best decision, but struggling. They also said he can do one and switch to the other or vice a versa, but my husband works full-time and we’re a bit concerned about What seems
The CLL specialist that we are seeing is giving my husband the choice between O&V and Zanubrutinib. We are trying to make the best decision, but struggling. They also said he can do one and switch to the other or vice a versa, but my husband works full-time and we’re a bit concerned about What seems
Cb1391
in
CLL Support
6 months ago
Stem cell transplant starts on Monday
My experience shows that for a few of us, even an abundance of treatments, can’t keep CLL at bay forever and it continues to be a life threatening
leukaemia
. Hardly a ‘good’ cancer ! 😕 Sending best wishes to you all Jackie
My experience shows that for a few of us, even an abundance of treatments, can’t keep CLL at bay forever and it continues to be a life threatening
leukaemia
. Hardly a ‘good’ cancer ! 😕 Sending best wishes to you all Jackie
Jm954
Administrator
in
CLL Support
11 months ago
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Supportive wife
Hi there! My husband was diagnosed with CLL in 2015. He had zero issues, I was just concerned about esophageal issues (burping) and requested a 50-year full physical so we could get a scope. Within two weeks my husband had diagnosis for esophageal cancer at GE junction (14% survival rate) and CLL.
Hi there! My husband was diagnosed with CLL in 2015. He had zero issues, I was just concerned about esophageal issues (burping) and requested a 50-year full physical so we could get a scope. Within two weeks my husband had diagnosis for esophageal cancer at GE junction (14% survival rate) and CLL.
Cb1391
in
CLL Support
6 months ago
A new kid on the block? Nemtabrutinib
Hi All, There is a new targeted drug in Clinical Trials that may offer a new treatment option for us CLLers—Nemtabrutinib. For the entire article on this drug go to cancer.osu.edu and scroll down to “First in human trial of new drug raises hopes for patients with relapsed blood cancer” dated 11/06/
Hi All, There is a new targeted drug in Clinical Trials that may offer a new treatment option for us CLLers—Nemtabrutinib. For the entire article on this drug go to cancer.osu.edu and scroll down to “First in human trial of new drug raises hopes for patients with relapsed blood cancer” dated 11/06/
Varney
in
CLL Support
6 months ago
Agios and Alnylam sign agreement for siRNA candidate
« We are pleased to license this programme from Alnylam, the leading RNAi therapeutics company, with the goal of delivering a convenient, disease-modifying treatment option that addresses the underlying pathophysiology of PV and reduces or eliminates the need for phlebotomy. “We look forward to initiating
« We are pleased to license this programme from Alnylam, the leading RNAi therapeutics company, with the goal of delivering a convenient, disease-modifying treatment option that addresses the underlying pathophysiology of PV and reduces or eliminates the need for phlebotomy. “We look forward to initiating
Manouche
in
MPN Voice
10 months ago
NICE Final Guidance on Ruxolitinib for the treatment of Polycythaemia Vera
Members of the MPN Voice advocacy team, a PV patient who was part of the MAJIC-PV trial and representatives from
Leukaemia
Care also attended NICE committee meetings at which the suitability of Ruxolitinib as an additional treatment option for PV patients in England was fully evaluated.
Members of the MPN Voice advocacy team, a PV patient who was part of the MAJIC-PV trial and representatives from
Leukaemia
Care also attended NICE committee meetings at which the suitability of Ruxolitinib as an additional treatment option for PV patients in England was fully evaluated.
Mazcd
MPNVoice
in
MPN Voice
7 months ago
nutritional support/supplements for CLL
Hi we have just had recent diagnosis of CLL Any dietary or supplements tips? Have heard Green tea is helpful?
Hi we have just had recent diagnosis of CLL Any dietary or supplements tips? Have heard Green tea is helpful?
kingfishermountain
in
CLL Support
7 months ago
vaccines
hi everyone!! I’ve recently ( couple of weeks ago) been diagnosed with CLL waiting for bone marrow biopsy now as it’s not understood why I’m so poorly so no treatment yet until those biopsy results incase there’s more going on. I wanted to ask if anyone else isn’t comfortable or even refuses vaccines
hi everyone!! I’ve recently ( couple of weeks ago) been diagnosed with CLL waiting for bone marrow biopsy now as it’s not understood why I’m so poorly so no treatment yet until those biopsy results incase there’s more going on. I wanted to ask if anyone else isn’t comfortable or even refuses vaccines
Dragonfly766
in
CLL Support
7 months ago
tasquinimod in myelofibrosis (MF)
»The data showed that treatment with this drug results in normal blood counts, reduction of fibrosis in the bone marrow and normalization of spleen size in this mouse model. That suggests that tasquinimod can act as a disease modifying agent in MF » « The now planned study will investigate tasquinimod
»The data showed that treatment with this drug results in normal blood counts, reduction of fibrosis in the bone marrow and normalization of spleen size in this mouse model. That suggests that tasquinimod can act as a disease modifying agent in MF » « The now planned study will investigate tasquinimod
Manouche
in
MPN Voice
10 months ago
Jakafi + Grapefruit
Just came across this warning on Drugs.com. I had never seen before. Have those of you on Jakafi (ruxolitinib) seen this warning?
ruxolitinib food Applies to: Jakafi (ruxolitinib)
Do not consume grapefruit or grapefruit juice during treatment with ruxolitinib unless directed otherwise by
Just came across this warning on Drugs.com. I had never seen before. Have those of you on Jakafi (ruxolitinib) seen this warning?
ruxolitinib food Applies to: Jakafi (ruxolitinib)
Do not consume grapefruit or grapefruit juice during treatment with ruxolitinib unless directed otherwise by
hunter5582
in
MPN Voice
10 months ago
Update re ASCT relapse
Due to my cll returning and having had several new lines of treatment my consultants both my Cll specialist and my transplant specialist have offered me Rchop chemotherapy as one of my few options. This treatment I believe is not used to treat cll but used to treat lymphomas. Apparently it has been
Due to my cll returning and having had several new lines of treatment my consultants both my Cll specialist and my transplant specialist have offered me Rchop chemotherapy as one of my few options. This treatment I believe is not used to treat cll but used to treat lymphomas. Apparently it has been
Kraskie1915
in
CLL Support
7 months ago
Anyone had a coronary sinus reducer?
Basically my bone marrow transplant and other treatment for
leukaemia
has likely caused my heart disease. Since 2019 I have had 5 angiograms and 3 angioplasties. I'm urgently awaiting another one of each.
Basically my bone marrow transplant and other treatment for
leukaemia
has likely caused my heart disease. Since 2019 I have had 5 angiograms and 3 angioplasties. I'm urgently awaiting another one of each.
SomersetJo
in
British Heart Foundation
8 months ago
B CELL lymphoma
Hello friends, Question- had a fish test done and the test revealed negative for B Cell lymphoma has anyone had this reading before and still have CLL? lol I’m totally confused.. nothing new there! I did call the Doc to see what he thinks haven’t heard anything yet. Thought I would ask to see if you
Hello friends, Question- had a fish test done and the test revealed negative for B Cell lymphoma has anyone had this reading before and still have CLL? lol I’m totally confused.. nothing new there! I did call the Doc to see what he thinks haven’t heard anything yet. Thought I would ask to see if you
Tchapman
in
CLL Support
7 months ago
Petechia
I have been treated with Ibrutinib for 16 months and have responded to treatment really well. My white blood count was 148.7 when I started treatment now I am 14.7. I have Petechia on arms and legs. My platelets are 278. Just wondering what could be causing this. This is my first time to post and
I have been treated with Ibrutinib for 16 months and have responded to treatment really well. My white blood count was 148.7 when I started treatment now I am 14.7. I have Petechia on arms and legs. My platelets are 278. Just wondering what could be causing this. This is my first time to post and
Glasstop
in
CLL Support
7 months ago
CLL/SLL and ischemic bowel death
My brother had untreated SLL. He died March 2022, after a week of omicron Covid infection that seemed to pass mid January of that year. We have heard rumors that many with CLL/SLL die of blood clot/ischemia, but I have been unable to confirm. Are there data to confirm this? I myself have CLL, which
My brother had untreated SLL. He died March 2022, after a week of omicron Covid infection that seemed to pass mid January of that year. We have heard rumors that many with CLL/SLL die of blood clot/ischemia, but I have been unable to confirm. Are there data to confirm this? I myself have CLL, which
prichman
in
CLL Support
7 months ago
Treatment for life?
Hello. First time posting here. Diagnosed with CLL in July by flow test and Fish test. Although still technically in lymphocytosis. My chart says diagnosis: CLL. During the discussion in July my Dr told me of things they will be keeping an eye on. Then he said he won't discuss particular treatment plans
Hello. First time posting here. Diagnosed with CLL in July by flow test and Fish test. Although still technically in lymphocytosis. My chart says diagnosis: CLL. During the discussion in July my Dr told me of things they will be keeping an eye on. Then he said he won't discuss particular treatment plans
Quiltingone
in
CLL Support
7 months ago
Jak2/tet2 mutation
Hello this is Ben from VA! I was diagnosed with MPN last year and use Besremi every 2 weeks. I have jak2/tet2 mutations which makes me feel confused and scared since the majority of PVs only have jak2(or other so-called driver mutations). I read a lot online and it seems tet2 is not the worst thing
Hello this is Ben from VA! I was diagnosed with MPN last year and use Besremi every 2 weeks. I have jak2/tet2 mutations which makes me feel confused and scared since the majority of PVs only have jak2(or other so-called driver mutations). I read a lot online and it seems tet2 is not the worst thing
Ben2022
in
MPN Voice
10 months ago
Fibro rant
I appreciate I've had quite a lot of time off work with this and losing my Dad to
leukaemia
in October last year. However I didn't appreciate my firm asking if I wanted voluntary redundancy..... I've been there 10 years worked hard and right now need some understanding and support.
I appreciate I've had quite a lot of time off work with this and losing my Dad to
leukaemia
in October last year. However I didn't appreciate my firm asking if I wanted voluntary redundancy..... I've been there 10 years worked hard and right now need some understanding and support.
Marieg1270
in
Fibromyalgia Action UK
10 months ago
A trial examining the effects of pausing BTKis to coincide with SARS-CoV-2 vaccination and its impact on immune responses in CLL patients
Trial registration number ISRCTN14197181 https://bmjopen.bmj.com/content/13/9/e077946 This study aims to determine in patients with chronic lymphocytic
leukaemia
(CLL) if a 3-week pause in Bruton tyrosine kinase inhibitor therapy (BTKi) starting 1 week before delivery of SARS-CoV-2 vaccine booster
Trial registration number ISRCTN14197181 https://bmjopen.bmj.com/content/13/9/e077946 This study aims to determine in patients with chronic lymphocytic
leukaemia
(CLL) if a 3-week pause in Bruton tyrosine kinase inhibitor therapy (BTKi) starting 1 week before delivery of SARS-CoV-2 vaccine booster
gardening-girl
in
CLL Support
8 months ago
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