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Experiences with
Fludarabine, cyclophosphamide and rituximab (FCR)
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CHEAP SINEMET CR OR EXPENSIVE RYTARY. WHICH WORKS BEST FOR YOU?
Hi Friends, my MDS is about to switch me to expensive Rytary.I keep wondering why Rytary instead of a cheaper Sinemet CR.If you had an experience with this two drugs as a patient or a caregiver,please your input will be appreciated.I am currently having off periods due to generic Sinemet,not working
Hi Friends, my MDS is about to switch me to expensive Rytary.I keep wondering why Rytary instead of a cheaper Sinemet CR.If you had an experience with this two drugs as a patient or a caregiver,please your input will be appreciated.I am currently having off periods due to generic Sinemet,not working
OREOLU
in
Cure Parkinson's
4 years ago
Wishes
Seven month after
FCR
I feel very well and healthy and wish you all the same ! Anna
Seven month after
FCR
I feel very well and healthy and wish you all the same ! Anna
Ankakoza
in
CLL Support
4 years ago
Shield or not to shield - confusing advice
I was diagnosed with CLL in Spring of 2011 and undertook a variation of the
FCR
chemo treatment on the ARCTIC clinical trial in the Autumn. Several years ago I was advised that I was in full remission and see my consultant every 4-6 months.
I was diagnosed with CLL in Spring of 2011 and undertook a variation of the
FCR
chemo treatment on the ARCTIC clinical trial in the Autumn. Several years ago I was advised that I was in full remission and see my consultant every 4-6 months.
Hidden
in
Positive Wellbeing During Self-Isolation
4 years ago
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ACCEPTED INTO LOXO-305 CLINICAL TRIAL
After being diagnosed in 2009 with CLL, I have been through 3 prior treatments,
FCR
, Ibrutinib and Venclaxta. I had a 5 1/2 year remission with
FCR
, 3 with Ibrutinib,and about 18 months with Venclaxta. After my relapse in December 2019, I was offered a place in the LOXO trial.
After being diagnosed in 2009 with CLL, I have been through 3 prior treatments,
FCR
, Ibrutinib and Venclaxta. I had a 5 1/2 year remission with
FCR
, 3 with Ibrutinib,and about 18 months with Venclaxta. After my relapse in December 2019, I was offered a place in the LOXO trial.
steve5441
in
CLL Support
4 years ago
After FCR are we more vulnerable to CoVid 19?
Given that after
FCR
treatment we are more at risk of lung cancer, are we more susceptible to becoming very ill or dying if we catch Covid19? I worry because my lungs are so much more sensitive now. I finished
FCR
eighteen months ago and I start to cough if I am near an open fire.
Given that after
FCR
treatment we are more at risk of lung cancer, are we more susceptible to becoming very ill or dying if we catch Covid19? I worry because my lungs are so much more sensitive now. I finished
FCR
eighteen months ago and I start to cough if I am near an open fire.
Mandy56
in
CLL Support
4 years ago
Magnesium chloride - dosing
I started using magnesium chloride gel two weeks ago, every night, along with my meds; it works great and sleep has improved to 5-6 hours. But I need up to 8 hours. How soon can you reapply the gel? Is it risky to “overdose on magnesium”?
I started using magnesium chloride gel two weeks ago, every night, along with my meds; it works great and sleep has improved to 5-6 hours. But I need up to 8 hours. How soon can you reapply the gel? Is it risky to “overdose on magnesium”?
ScribblerCLT
in
Restless Legs Syndrome
4 years ago
Lymphocyte count after FCR
9 months after end of
FCR
and lymphocytes 0.50 Meaning immune system still weak So as from tomorrow self isolate Also now see anyone with the coronavirus . One thing is they always have a low lymphocyte count So if I got it my count could go more say 0.15 and alone how dangerous would that be ?
9 months after end of
FCR
and lymphocytes 0.50 Meaning immune system still weak So as from tomorrow self isolate Also now see anyone with the coronavirus . One thing is they always have a low lymphocyte count So if I got it my count could go more say 0.15 and alone how dangerous would that be ?
Jsk1950
in
CLL Support
4 years ago
Are we part of the vulnerable group.
Hi folks Given today’s announcement may be obvious but I’m 7 years post
FCR
and bloods good. Question, are we in the vulnerable group and should socially isolate for 12 weeks. Stated at press conference vulnerable with chronic conditions and mentioned leukaemia. Thanks
Hi folks Given today’s announcement may be obvious but I’m 7 years post
FCR
and bloods good. Question, are we in the vulnerable group and should socially isolate for 12 weeks. Stated at press conference vulnerable with chronic conditions and mentioned leukaemia. Thanks
Billys60
in
CLL Support
4 years ago
Travel advice.
I’m coming up for 7 years post
FCR
. and so far doing really well. last checkup was 5 weeks ago and almost all still normal range bloods. I don’t want to mess it up if avoidable. Has anyone had any experience or any advice. Thanks in advance.
I’m coming up for 7 years post
FCR
. and so far doing really well. last checkup was 5 weeks ago and almost all still normal range bloods. I don’t want to mess it up if avoidable. Has anyone had any experience or any advice. Thanks in advance.
Billys60
in
CLL Support
4 years ago
Cll suport
Treated 7x
fcr
15 month ago. I have advised ibrutinib. Any one tll me his experince about ibrutinib. Any one tell me about avilibility.
Treated 7x
fcr
15 month ago. I have advised ibrutinib. Any one tll me his experince about ibrutinib. Any one tell me about avilibility.
Dpt517
in
CLL Support
4 years ago
My two year on ibrutinib check up
Because I am 13q mutated
fcr
was always in the discussion with me. My doctor, Dr Keating, was a founder of
fcr
therapy. But
fcr
came off the table with my hemolytic anemia which contraindicates any fludarabine based treatment. So two years ago I took my first three capsules of ibrutinib.
Because I am 13q mutated
fcr
was always in the discussion with me. My doctor, Dr Keating, was a founder of
fcr
therapy. But
fcr
came off the table with my hemolytic anemia which contraindicates any fludarabine based treatment. So two years ago I took my first three capsules of ibrutinib.
cajunjeff
in
CLL Support
4 years ago
Continuous / Extended Release
I used to take Sinemet CR 50/250 overnight (as well as various daytime medications. Worked well for me. Sinemet CR 50/250 is no longer manufactured. I was offered a generic product, same carbidopa levodopa mix, but extended release rather than continuous release. I have been using this for about 6 weeks
I used to take Sinemet CR 50/250 overnight (as well as various daytime medications. Worked well for me. Sinemet CR 50/250 is no longer manufactured. I was offered a generic product, same carbidopa levodopa mix, but extended release rather than continuous release. I have been using this for about 6 weeks
Joynb
in
Cure Parkinson's
4 years ago
P
I'm supposed to start taking sinemet CR 50mg but need to know how will affect me...
I'm supposed to start taking sinemet CR 50mg but need to know how will affect me...
Hidden
in
Cure Parkinson's
4 years ago
What is the difference between non fdg avid node and fdg avid node?
In my latest PET non fdg avid nodes were found after 4 cycle of
FCR
. What is the difference between nod fdg avid and fdg avid nodes.?
In my latest PET non fdg avid nodes were found after 4 cycle of
FCR
. What is the difference between nod fdg avid and fdg avid nodes.?
Supratim
in
CLL Support
4 years ago
Mutated and unmutated cll for dummies
We know that on average people with unmutated cll will not do as well with chemotherapy treatments like
fcr
. So there is an argument mutation testing is important not just as a prognostic marker, but also to help inform our treatment choices for those considering chemo.
We know that on average people with unmutated cll will not do as well with chemotherapy treatments like
fcr
. So there is an argument mutation testing is important not just as a prognostic marker, but also to help inform our treatment choices for those considering chemo.
cajunjeff
in
CLL Support
4 years ago
List of PD Supplements and medications
I am doing a little research project on the most used supplements, vitamins and medications that may be useful for PD. At the moment for vitamins/supplements I have Vitamin B1 Mannitol Vitamin D(+ K) Curcumin CoQ10 N-acetylcysteine Lithium Orotate Celery Seed Extract PQQ For standard medications I have
I am doing a little research project on the most used supplements, vitamins and medications that may be useful for PD. At the moment for vitamins/supplements I have Vitamin B1 Mannitol Vitamin D(+ K) Curcumin CoQ10 N-acetylcysteine Lithium Orotate Celery Seed Extract PQQ For standard medications I have
alexask
in
Cure Parkinson's
4 years ago
Lymph nodes after 6 rounds of FCR
Hi, My friend completed 6 rounds of
FCR
last month. Still i can see small small lymph nodes near neck, shoulder. But I am seeing that lymph node has increased in size little bit compared last month. Is this common? Anybody faced same like this. Please please help me to get more info on this.
Hi, My friend completed 6 rounds of
FCR
last month. Still i can see small small lymph nodes near neck, shoulder. But I am seeing that lymph node has increased in size little bit compared last month. Is this common? Anybody faced same like this. Please please help me to get more info on this.
pbaddi
in
CLL Support
4 years ago
Any post FCR warriors struggling with the cold?
I finished
FCR
a year ago and in the past couple of months or so have begun to feel more like the old me and less tired. However, in this weather in the UK (8 degrees now, but was below freezing the last few days) I feel miserably cold.
I finished
FCR
a year ago and in the past couple of months or so have begun to feel more like the old me and less tired. However, in this weather in the UK (8 degrees now, but was below freezing the last few days) I feel miserably cold.
Mandy56
in
CLL Support
4 years ago
So far so good.
I posted about 6 months ago that 1 round of
FCR
nearly killed me. My Hemoglobin dropped to 45 and I needed many transfusions. They decided to abandon treatment and was put back on watch and wait. After my appointment today, all bloods are still in normal range.
I posted about 6 months ago that 1 round of
FCR
nearly killed me. My Hemoglobin dropped to 45 and I needed many transfusions. They decided to abandon treatment and was put back on watch and wait. After my appointment today, all bloods are still in normal range.
Racing1961
in
CLL Support
4 years ago
EHA 2019: Dr. Maloney on CAR-T and Dr. Davids of Chemo-Immunotherapy combinations
Davids of DFCI done at EHA 2019, he talks about adding ibrutinib to
FCR
to improve outcomes. See https://cllsociety.org/2019/11/eha-2019-dr-matthew-davids-on-combination-therapies-with-chemotherapy-th/ Stay strong. We are all in this together Brian CLLSociety.org
Davids of DFCI done at EHA 2019, he talks about adding ibrutinib to
FCR
to improve outcomes. See https://cllsociety.org/2019/11/eha-2019-dr-matthew-davids-on-combination-therapies-with-chemotherapy-th/ Stay strong. We are all in this together Brian CLLSociety.org
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
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