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Experiences with
Cyclophosphamide
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Prednisolone reducing and Adrenal insufficiency
Finished the last of the
Cyclophosphamide
infusions 2 weeks ago and had already started reducing the Pred a little while ago from 10mg by 1mg monthly. Half way through 7mg started developing a pain under left ribs at the back, now worse that I have gone to 6mg.
Finished the last of the
Cyclophosphamide
infusions 2 weeks ago and had already started reducing the Pred a little while ago from 10mg by 1mg monthly. Half way through 7mg started developing a pain under left ribs at the back, now worse that I have gone to 6mg.
HappyLung
in
Vasculitis UK
2 years 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
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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
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
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
I knew Chlorambucil use for CLL dated back to the 1950's but I hadn't appreciated that was also the case for
cyclophosphamide
, (the 'C' in FCR).
I knew Chlorambucil use for CLL dated back to the 1950's but I hadn't appreciated that was also the case for
cyclophosphamide
, (the 'C' in FCR).
AussieNeil
Partner
in
CLL Support
2 years 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
2 years ago
cyclophosphamide
Hi, I've just started
cyclophosphamide
after finding my current is not working. I was first diagnosed in 2016 and have had several previous lines of treatment. I'm trying to remain positive and looking for some encouragement. Can anyone help?
Hi, I've just started
cyclophosphamide
after finding my current is not working. I was first diagnosed in 2016 and have had several previous lines of treatment. I'm trying to remain positive and looking for some encouragement. Can anyone help?
Suzannevans
in
My Ovacome
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
2 years ago
Recurrent PC
Administer low-dose
cyclophosphamide
five days before the focal procedure to suppress a sub-population of lymphocytes (called Tregs) to further enhance T-cell destruction of cancer cells. 3. Use image-guided technology to precisely cryo-damage a portion of the malignant lesion. 4.
Administer low-dose
cyclophosphamide
five days before the focal procedure to suppress a sub-population of lymphocytes (called Tregs) to further enhance T-cell destruction of cancer cells. 3. Use image-guided technology to precisely cryo-damage a portion of the malignant lesion. 4.
marmigs
in
Advanced Prostate Cancer
2 years 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
2 years 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
2 years 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
2 years 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
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
2 years ago
New to vasculitis
Start 1st
cyclophosphamide
Iv therapy in 2 days and on prednisone 60 mg daily. Advice? Tips?
Start 1st
cyclophosphamide
Iv therapy in 2 days and on prednisone 60 mg daily. Advice? Tips?
Twin7
in
Vasculitis UK
2 years 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
2 years ago
An Update on my previous post. Just started Cyclophosphamide infusions.
Had my first
Cyclophosphamide
infusion on Monday, 4 days ago. First 2 days felt OK, just a little quizy at times, they give you anti sickness pills in case you need them. Metoclopramide. Last couple of days felt very tired and breathless, some stomach ache and acute anxiety.
Had my first
Cyclophosphamide
infusion on Monday, 4 days ago. First 2 days felt OK, just a little quizy at times, they give you anti sickness pills in case you need them. Metoclopramide. Last couple of days felt very tired and breathless, some stomach ache and acute anxiety.
HappyLung
in
Vasculitis UK
2 years ago
Experiences with Cyclophosphamide
My Consultant is considering adding a course of
cyclophosphamide
to my treatment plan.
My Consultant is considering adding a course of
cyclophosphamide
to my treatment plan.
SnowSeeker19
in
LUPUS UK
2 years 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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