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Venetoclax ramp up week 2
I write this as I am on my way home from the two day ramp up process for week 2 of Venetoclax. I am happy to report that things are going amazingly well! My blood lab results are completely stable from last week and are completely normal. No highs, and no lows! Side effects have been minimal. Slight
I write this as I am on my way home from the two day ramp up process for week 2 of Venetoclax. I am happy to report that things are going amazingly well! My blood lab results are completely stable from last week and are completely normal. No highs, and no lows! Side effects have been minimal. Slight
t2aa
in
CLL Support
5 years ago
Looking for advice on travel insurance
Anyone have advice on travel insurance. I’m looking to visit my Daughter in South Africa. I’m 6 years post FCR
Anyone have advice on travel insurance. I’m looking to visit my Daughter in South Africa. I’m 6 years post FCR
Billys60
in
CLL Support
5 years ago
Travel insurance
Hi folks. I know this will have been asked a thousand times however. I am 6 years since FCR treatment and to date still doing well not near further treatment ( fingers crossed) my daughter lives in South Africa I’m in Scotland and looking to visit her next year. Does anyone have advice on travel insurance
Hi folks. I know this will have been asked a thousand times however. I am 6 years since FCR treatment and to date still doing well not near further treatment ( fingers crossed) my daughter lives in South Africa I’m in Scotland and looking to visit her next year. Does anyone have advice on travel insurance
Billys60
in
CLL Support
5 years ago
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Novel Combos Are Shaking Up the CLL Landscape but FCR still has its place
Published: Saturday, Sep 14, 2019 During a presentation at the 2019 Society of Haematological Oncology Annual Meeting, Dr Jain said recent clinical trial findings have helped clarify therapy choices based on the patient’s age, comorbid conditions, and mutation status but that questions about optimal
Published: Saturday, Sep 14, 2019 During a presentation at the 2019 Society of Haematological Oncology Annual Meeting, Dr Jain said recent clinical trial findings have helped clarify therapy choices based on the patient’s age, comorbid conditions, and mutation status but that questions about optimal
Jm954
Administrator
in
CLL Support
5 years ago
What do you do when you are MRD Negative?
I just learned I am MRD negative on Venetoclax and Rituximab. We had been planning on adding calquence. My doctor still wants to do that. It seems he wants to hit it hard while it is down. On the other hand, I'd like to relax and save the meds for later. So, perhaps just stay on a reduced dosage of venetoclax
I just learned I am MRD negative on Venetoclax and Rituximab. We had been planning on adding calquence. My doctor still wants to do that. It seems he wants to hit it hard while it is down. On the other hand, I'd like to relax and save the meds for later. So, perhaps just stay on a reduced dosage of venetoclax
profrich
in
CLL Support
5 years ago
Started imbruvica
I was diagnosed with CLL in 2000... Did the usual watchful waiting till 2009, then had FCR for 6 months. Went into total remission till 2016... Had AIHA in September of 2018, treated in hospital with 4 transfusions ,and prednisone. My cll is back & I started imbruvica 3 days ago. I'm feeling much stronger
I was diagnosed with CLL in 2000... Did the usual watchful waiting till 2009, then had FCR for 6 months. Went into total remission till 2016... Had AIHA in September of 2018, treated in hospital with 4 transfusions ,and prednisone. My cll is back & I started imbruvica 3 days ago. I'm feeling much stronger
habsrule
in
CLL Support
5 years ago
Lifetime on Prednisone?
This will be quite a controversial post I guess, but my question is " at what age would you be prepared to use pred as a first line drug for RA and OA with the intention of remaining on pred for life"? Reason I ask is that I'm 64 next week, have had RA since 1983 and am currently on Rituximab ( although
This will be quite a controversial post I guess, but my question is " at what age would you be prepared to use pred as a first line drug for RA and OA with the intention of remaining on pred for life"? Reason I ask is that I'm 64 next week, have had RA since 1983 and am currently on Rituximab ( although
Maggsie
in
NRAS
5 years ago
Rituximab only
Has anyone got into remission with Rituximab by itself? NO CHEMO?
Has anyone got into remission with Rituximab by itself? NO CHEMO?
luciabon
in
Non Hodgkin's Lymphoma Friends
5 years ago
Flowers and FCR
Well, it's the evening before I start FCR and a friend has sent me cut flowers. There is conflicting info on line, some sights say no flowers or plants in the house at all and others say just not in the bedroom. Any thoughts?
Well, it's the evening before I start FCR and a friend has sent me cut flowers. There is conflicting info on line, some sights say no flowers or plants in the house at all and others say just not in the bedroom. Any thoughts?
Root65
in
CLL Support
5 years ago
Advice about flu vaccination please.
Hello everyone. I just need to ask if Paul ( my lovely husband who has the CLL) should have any particular flu vaccine. Our GP ( we are in the U.K.) says we should contact them about mid October, but some of the local pharmacies are advertising flu jabs now.... I have heard there are different types
Hello everyone. I just need to ask if Paul ( my lovely husband who has the CLL) should have any particular flu vaccine. Our GP ( we are in the U.K.) says we should contact them about mid October, but some of the local pharmacies are advertising flu jabs now.... I have heard there are different types
Fran57
in
CLL Support
5 years ago
Churg Strauss - stopping Rituximab?
I am being treated here in France for Churg Strauss with 6 monthly infusions of Rituximab (I think it is called something slightly different in the uk). To my surprise I have been told that has to end after 18 months which will be after my next infusion in November. Has anyone else had this happen? No
I am being treated here in France for Churg Strauss with 6 monthly infusions of Rituximab (I think it is called something slightly different in the uk). To my surprise I have been told that has to end after 18 months which will be after my next infusion in November. Has anyone else had this happen? No
sarahdollygirl
in
Vasculitis UK
5 years ago
Feedback on my new treatment options, what to do?
Hi everyone. So here goes: in short, after a long period of watch and wait, I have been told I need treatment again. Was always told I would eventually need treatment again, but still a shock, particularly as I feel well. Ran my first ever London marathon this Year! Will be running Great North Run
Hi everyone. So here goes: in short, after a long period of watch and wait, I have been told I need treatment again. Was always told I would eventually need treatment again, but still a shock, particularly as I feel well. Ran my first ever London marathon this Year! Will be running Great North Run
Davdow
in
CLL Support
5 years ago
FLAIR TRIAL-FCR-HOLIDAYS
Hi members ..i complete my final FCR treatment in the UK on October 11th..we have a motorhome and have been travelling around the UK in it during treatment when I have been well..the question is we would like to travel to spain in it 5 weeks after treatment completes to our holiday home there for a
Hi members ..i complete my final FCR treatment in the UK on October 11th..we have a motorhome and have been travelling around the UK in it during treatment when I have been well..the question is we would like to travel to spain in it 5 weeks after treatment completes to our holiday home there for a
Fayeryan1
in
CLL Support
5 years ago
Progression Free Survival (PFS) post Discontinuation of Ibrutinib in E1912 Trial
An update re the E1912 trial reported at iwCLL this year -
"patients who stopped ibrutinib for toxicity had a median PFS from the time of stopping ibrutinib of about 2 years which is reassuring news. This phenomenon is in clinical practice, good to see similar data from a RCT. However, there is
An update re the E1912 trial reported at iwCLL this year -
"patients who stopped ibrutinib for toxicity had a median PFS from the time of stopping ibrutinib of about 2 years which is reassuring news. This phenomenon is in clinical practice, good to see similar data from a RCT. However, there is
Jm954
Administrator
in
CLL Support
5 years ago
CLL FCR update - 3 years on.
Hello all CLL curios. I have just had my latest 6 monthly ‘Watch and Wait’ blood tests and Flair trial assessment 3 years on from commencement of FCR chemotherapy. As I was an avid reader and regular contributor of posts on the build up and during my Chemo - drawing great strength and support - I felt
Hello all CLL curios. I have just had my latest 6 monthly ‘Watch and Wait’ blood tests and Flair trial assessment 3 years on from commencement of FCR chemotherapy. As I was an avid reader and regular contributor of posts on the build up and during my Chemo - drawing great strength and support - I felt
Rich316
in
CLL Support
5 years ago
CLL-.hair dye with FCR
hi...when did any members dye their hair before/ during /after treatment for CLL..I havent and darent as everything more sensitive now for at least 6 months and going pretty grey 😒...how long did you wait ? I dont want a reaction doing it too early ..even makeup caused irritation shortly after FCR started
hi...when did any members dye their hair before/ during /after treatment for CLL..I havent and darent as everything more sensitive now for at least 6 months and going pretty grey 😒...how long did you wait ? I dont want a reaction doing it too early ..even makeup caused irritation shortly after FCR started
Fayeryan1
in
CLL 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
Rituximab & Antibiotics?
I am due to start infusions of the Biologic Rituximab next month & was wondering what would happen if I had an infection? Would I still be able to have Antibiotics with Rituximab in my system? 🤔
I am due to start infusions of the Biologic Rituximab next month & was wondering what would happen if I had an infection? Would I still be able to have Antibiotics with Rituximab in my system? 🤔
Twitty999
in
NRAS
5 years ago
coughed up blood
Hi everyone, I hope everyone is doing as well as can be expected. I know this isn't related to RA so hope you don't mind me posting but I am so worried and making myself il and in the past everyone on here has been a great help. Anyway i thought I was getting better after having a virus or something
Hi everyone, I hope everyone is doing as well as can be expected. I know this isn't related to RA so hope you don't mind me posting but I am so worried and making myself il and in the past everyone on here has been a great help. Anyway i thought I was getting better after having a virus or something
mille
in
NRAS
5 years ago
Ibrutinib and Rituximab (IR) is Superior to Chemo-immunotherapy (CIT) in CLL” Big News, or is it really, and did they get it right?
Many patients are being offered IR and that's a good thing, but wouldn't Ibrutinib alone be a better choice for nearly everyone. For the whole story, please take a look at my review of latest data and context of this important research. https://cllsociety.org/2019/08/ibrutinib-and-rituximab-ir-is-superior-to-chemo-immunotherapy-cit-in-cll-big-news-or-is-it-really-and-did-they-get-it-right
Many patients are being offered IR and that's a good thing, but wouldn't Ibrutinib alone be a better choice for nearly everyone. For the whole story, please take a look at my review of latest data and context of this important research. https://cllsociety.org/2019/08/ibrutinib-and-rituximab-ir-is-superior-to-chemo-immunotherapy-cit-in-cll-big-news-or-is-it-really-and-did-they-get-it-right
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
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