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Being Positive and Supportive
As I read all the kind responses to my post about finally feeling better I realize the best way to support this group and the best medicine for me and my family is to be positive, hopeful and upbeat. During the FCR treatment in 2018 I was just that! Then after 11 skin cancer surgeries, Covid, and many
As I read all the kind responses to my post about finally feeling better I realize the best way to support this group and the best medicine for me and my family is to be positive, hopeful and upbeat. During the FCR treatment in 2018 I was just that! Then after 11 skin cancer surgeries, Covid, and many
skipro
in
CLL Support
1 year ago
MRD blood test after Venetoclax treatment
I finished Venetoclax treatment last year in the uk. My haematologist is awaiting the result of a MRD blood test and if negative then he tells me I will be discharged. Bit of a surprise to me as I was diagnosed in 2004 and have been routinely monitored since then. I had FCR treatment in 2014. My blood
I finished Venetoclax treatment last year in the uk. My haematologist is awaiting the result of a MRD blood test and if negative then he tells me I will be discharged. Bit of a surprise to me as I was diagnosed in 2004 and have been routinely monitored since then. I had FCR treatment in 2014. My blood
yorkie19
in
CLL Support
1 year ago
STEP ONE OF MY THIRD CLINICAL TRIAL huCAR-T19 IL-18
With the ink barely dry on my clinical trial consent forms, it was back up to Penn Medicine for my blood collection. First stop was the radiology dept to have a neck catheter installed, I decided against the arm extraction method, as it limits your mobility during the procedure. Cath installation complete
With the ink barely dry on my clinical trial consent forms, it was back up to Penn Medicine for my blood collection. First stop was the radiology dept to have a neck catheter installed, I decided against the arm extraction method, as it limits your mobility during the procedure. Cath installation complete
steve5441
in
CLL Support
1 year ago
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PICC line or not
hello every one I read every ones post everyday so hoping you can give me some advice . I had FCR in 2016/2017 which I struggled with the last 3 months of treatment, I started on acalabrutanib but after 1 week had to stop due to severe bone pain , so severe I couldn’t get out of bed or a chair , was
hello every one I read every ones post everyday so hoping you can give me some advice . I had FCR in 2016/2017 which I struggled with the last 3 months of treatment, I started on acalabrutanib but after 1 week had to stop due to severe bone pain , so severe I couldn’t get out of bed or a chair , was
mush56
in
CLL Support
1 year ago
alternative therapies
Hi, I was diagnosed in Feb2020, SLL, Unmutated, started treatment with FCR which gave me 18months before swollen nodes and spiking bloods showed the SLL was back. During my no treatment time I had a nasty case of Shingles which lasted 3 months then RSV which lasted 6 months. In September 22 I started
Hi, I was diagnosed in Feb2020, SLL, Unmutated, started treatment with FCR which gave me 18months before swollen nodes and spiking bloods showed the SLL was back. During my no treatment time I had a nasty case of Shingles which lasted 3 months then RSV which lasted 6 months. In September 22 I started
MareeM
in
CLL Support
1 year ago
Latest bloodwork
My past 3 cbc's have shown a rise in specific areas that seem to indicate that I'm no longer in remission. I'm hoping I can attach results as I have questions about some elements. I have been on a low dose of (140mg) for the past 5 years and was previously treated with FCR in 2013. I will see my oncologist
My past 3 cbc's have shown a rise in specific areas that seem to indicate that I'm no longer in remission. I'm hoping I can attach results as I have questions about some elements. I have been on a low dose of (140mg) for the past 5 years and was previously treated with FCR in 2013. I will see my oncologist
rubberlegs68
in
CLL Support
1 year ago
V + O , TP53 and p13
after a great read through the recent posts on V+ O I have some confusion 1 my doc said that with a TP 53 mutation and p13 deletion that Zanu was a better option than V+ O. Is that the consensus ? 2 It is a bit disappointing that the PFS for V+ O starts when treatment starts. Is that true of
after a great read through the recent posts on V+ O I have some confusion 1 my doc said that with a TP 53 mutation and p13 deletion that Zanu was a better option than V+ O. Is that the consensus ? 2 It is a bit disappointing that the PFS for V+ O starts when treatment starts. Is that true of
skipro
in
CLL Support
1 year ago
Concise summary of the treatment history of CLL from the 1950s to the present, by Dr Bruce Cheson, contributor to the iwCLL and much more
It took until the early 90's before
Fludarabine
, the 'F' in FCR joined, then Rituximab (the 'R') just over 20 years ago, started the long reign of FCR as the gold standard, a title it still holds in far too many countries.
It took until the early 90's before
Fludarabine
, the 'F' in FCR joined, then Rituximab (the 'R') just over 20 years ago, started the long reign of FCR as the gold standard, a title it still holds in far too many countries.
AussieNeil
Partner
in
CLL Support
2 years ago
dental work while on V + O
As a result of the issues below, it looks like my only strictly dental salvage is 1. Having 3 molar implants Plus 2. A major bridge reconstruction for my front upper and lower teeth During my FCR in 2018 I was neutropenic and my oncologist advised against any dental work I have since relapsed
As a result of the issues below, it looks like my only strictly dental salvage is 1. Having 3 molar implants Plus 2. A major bridge reconstruction for my front upper and lower teeth During my FCR in 2018 I was neutropenic and my oncologist advised against any dental work I have since relapsed
skipro
in
CLL Support
1 year ago
Immunoglobulin substitution in patients with secondary antibody deficiency in chronic lymphocytic leukemia and multiple myeloma...
It should also be considered that B-cell depletion persists long after the end of treatment, especially in combination with
fludarabine
[33, 34]. One study showed that IgRT significantly reduced the risk of infection in patients with hypogammaglobulinemia [35].
It should also be considered that B-cell depletion persists long after the end of treatment, especially in combination with
fludarabine
[33, 34]. One study showed that IgRT significantly reduced the risk of infection in patients with hypogammaglobulinemia [35].
Yalokin
in
CLL Support
2 years ago
Severe Thigh Pain
I was diagnosed for CLL 12 months ago and had 6 courses of FCR Chemo which ended in August 22 . I have low immune system but feel ok, in the last month I have had severe thigh pain. I did have this during chem but was told due to the injections I had to support me through the period. Is it normal to
I was diagnosed for CLL 12 months ago and had 6 courses of FCR Chemo which ended in August 22 . I have low immune system but feel ok, in the last month I have had severe thigh pain. I did have this during chem but was told due to the injections I had to support me through the period. Is it normal to
Hrdy
in
CLL Support
1 year ago
V + O adverse affects
To anyone who has been treated with V +O, could you answer a few questions for me as I have just started? I am relapsed after FCR, have enlarged spleen (2-3 fold normal) ALC of 200,000, Hbg of 12.1 and platelets of 105,000 and EXTREME fatigue before starting treatment. After test dose of 100 mg of
To anyone who has been treated with V +O, could you answer a few questions for me as I have just started? I am relapsed after FCR, have enlarged spleen (2-3 fold normal) ALC of 200,000, Hbg of 12.1 and platelets of 105,000 and EXTREME fatigue before starting treatment. After test dose of 100 mg of
skipro
in
CLL Support
1 year ago
Scientists hail autoimmune disease therapy breakthrough
Autologous T cells from patients with SLE were transduced with a lentiviral anti-CD19 CAR vector, expanded and reinfused at a dose of 1 × 106 CAR T cells per kg body weight into the patients after lymphodepletion with
fludarabine
and cyclophosphamide.
Autologous T cells from patients with SLE were transduced with a lentiviral anti-CD19 CAR vector, expanded and reinfused at a dose of 1 × 106 CAR T cells per kg body weight into the patients after lymphodepletion with
fludarabine
and cyclophosphamide.
helvella
Thyroid UK
in
Thyroid UK
2 years ago
CLL symptoms and Obin reactions
Hi I was diagnosed with CLL 12 years ago while doing evaluations for worsening muscle pain for 10 years My oncologists say and I’ve never found any literature about any correlation between CLL and muscle pain. What do any group members know about it Next I remember feeling sick and have spleen
Hi I was diagnosed with CLL 12 years ago while doing evaluations for worsening muscle pain for 10 years My oncologists say and I’ve never found any literature about any correlation between CLL and muscle pain. What do any group members know about it Next I remember feeling sick and have spleen
skipro
in
CLL Support
1 year ago
Relapse/Refractory CLL
Hi All, At my last appointment w/CLL specialist, in December, he noted that my CLL appears to be becoming active again and I'll likely need treatment again this year. :( Instead of the usual 6-months, he set our next appointment for 3-months, which is coming up this week. So, of course, I've been
Hi All, At my last appointment w/CLL specialist, in December, he noted that my CLL appears to be becoming active again and I'll likely need treatment again this year. :( Instead of the usual 6-months, he set our next appointment for 3-months, which is coming up this week. So, of course, I've been
TeamDirtyBoots
in
CLL Support
1 year ago
Starting Venetoclax next week
Hi everyone,I found out today that I am to start Venetoclax next week and Rituximab 6 weeks later for a total of 6 months. I was diagnosed in 2018, had 6 months of FCR in 2019 which went pretty smoothly except for severe Neutropenia. I feel fine and my bloods are within normal range. My TP53 is negative
Hi everyone,I found out today that I am to start Venetoclax next week and Rituximab 6 weeks later for a total of 6 months. I was diagnosed in 2018, had 6 months of FCR in 2019 which went pretty smoothly except for severe Neutropenia. I feel fine and my bloods are within normal range. My TP53 is negative
Floxxy
in
CLL Support
1 year ago
CLL and Covid experiences
Hi, I am 65, have relapsed CLL after FCR treatment, made no antibodies to 6 Covid vaccinations. Otherwise I am healthy and physically very active. I'm so tire of the mask everywhere and so is my wife. Can anyone tell me if they have had Covid and how it went for them? Or anyone that can
Hi, I am 65, have relapsed CLL after FCR treatment, made no antibodies to 6 Covid vaccinations. Otherwise I am healthy and physically very active. I'm so tire of the mask everywhere and so is my wife. Can anyone tell me if they have had Covid and how it went for them? Or anyone that can
skipro
in
CLL Support
1 year ago
What shall i do??
Hello, I,m René from holland. I get the diagnose cll in november 2019. I have a 11 ATM deletion, en unmutated. My blood results and a ct scan gives the reason to start a treatment. I will speak mij doctor next monday, then i hear probably what kind of treatment it will be. It’s amost sure it will
Hello, I,m René from holland. I get the diagnose cll in november 2019. I have a 11 ATM deletion, en unmutated. My blood results and a ct scan gives the reason to start a treatment. I will speak mij doctor next monday, then i hear probably what kind of treatment it will be. It’s amost sure it will
Renefaassen
in
CLL Support
1 year ago
Richters and DLBCL after CLL in 2013
After CLL diagnosed in 2013, unmutated, Trisomie 12, CD 38 neg., started FCR 6 cycles in Uni Clinic Cologne (Prof Hallek) up to 4/2014. MRD neg and CR. Then 9 years without therapy living well, no side effects. Now, in Oct 2023 the CLL quickly turned back with RT and tp 53, as well as DLBCL near stomach
After CLL diagnosed in 2013, unmutated, Trisomie 12, CD 38 neg., started FCR 6 cycles in Uni Clinic Cologne (Prof Hallek) up to 4/2014. MRD neg and CR. Then 9 years without therapy living well, no side effects. Now, in Oct 2023 the CLL quickly turned back with RT and tp 53, as well as DLBCL near stomach
seoul1949
in
CLL Support
1 year ago
People's lived experience of complete remission after long illness?
Hello. Just joined, first post. Quick background: dx in 2008 when I was 43 yo; FCR 2011 → MRD (minimal residual disease); lenolidamide 2011-14; zanibrutrinib 2014-2019; BCl2 inhibitor 2019-now; adenocarcinoma lung removed 2018. Current tx is a trial BCl2 inhibitor (Beigene). I entered the trial at
Hello. Just joined, first post. Quick background: dx in 2008 when I was 43 yo; FCR 2011 → MRD (minimal residual disease); lenolidamide 2011-14; zanibrutrinib 2014-2019; BCl2 inhibitor 2019-now; adenocarcinoma lung removed 2018. Current tx is a trial BCl2 inhibitor (Beigene). I entered the trial at
Greyhound23
in
CLL Support
2 years ago
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