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Life or death... Or IVIG.
Thanks to you lovely people and great support group advice, I have my first IVIG INFUSION in two days in Portland, Oregon. I had FCR six years ago.... Cll/SLL Stage 4, Rai II. My FCR was stopped by the 5th month because I was so very toxic. Very aggressive FCR and I just never recovered. Always had
Thanks to you lovely people and great support group advice, I have my first IVIG INFUSION in two days in Portland, Oregon. I had FCR six years ago.... Cll/SLL Stage 4, Rai II. My FCR was stopped by the 5th month because I was so very toxic. Very aggressive FCR and I just never recovered. Always had
Kimsome
in
CLL Support
7 years ago
Just putting a tentative toe in the on line world!
Although I am new to the on line community I was diagnosed as having CLL a bit over nine years ago now, was treated was chlorambucil and then with FCR the following year. I guess I was lucky in that I only needed three courses rather than the usual six for my white cell count to come right down. And
Although I am new to the on line community I was diagnosed as having CLL a bit over nine years ago now, was treated was chlorambucil and then with FCR the following year. I guess I was lucky in that I only needed three courses rather than the usual six for my white cell count to come right down. And
Patientgill
in
CLL Support
7 years ago
Flu vaccine
Hello friends, I finished 6 rounds of FCR in March. I was so disappointed to discover last month that my white cell count and neuts were lower than when I was going through chemo. Had bloods checked last week and still the same. I've just returned to work at a school but am nervous now I've heard all
Hello friends, I finished 6 rounds of FCR in March. I was so disappointed to discover last month that my white cell count and neuts were lower than when I was going through chemo. Had bloods checked last week and still the same. I've just returned to work at a school but am nervous now I've heard all
Kenn123
in
CLL Support
7 years ago
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nausea returned 4 months post FCR
Hi everyone. I am new to this community and so glad to be able to connect with you all. I had 4 series of FCR treatment and am 4 months out since the last one. After each series (3 days each) I experienced about 3-4 days of nausea. After that my only symptom was fatigue. Surprisingly, about 3 weeks
Hi everyone. I am new to this community and so glad to be able to connect with you all. I had 4 series of FCR treatment and am 4 months out since the last one. After each series (3 days each) I experienced about 3-4 days of nausea. After that my only symptom was fatigue. Surprisingly, about 3 weeks
Hidden
in
CLL Support
7 years ago
Neutrophils staying low
My OH has just completed a 4th cycle of FCR - however each cycle has been reduced from the previous one, initially due to low platelet figures, now it's low neutrophils. Full set of blood tests today, so waiting to hear what happens next. Only symptom is fatigue, but this is debilitating and depressing
My OH has just completed a 4th cycle of FCR - however each cycle has been reduced from the previous one, initially due to low platelet figures, now it's low neutrophils. Full set of blood tests today, so waiting to hear what happens next. Only symptom is fatigue, but this is debilitating and depressing
shoppingtrolley
in
CLL Support
7 years ago
Ibrutinib as frontline??
Hello everyone! Does anyone know why Ibrutinib is only available to CLL patients whose previous treatments have been unsuccessful? It was first made routinely available to leukaemia patients through the NHS in 2016, apparently after years of campaigning by Bloodwise, the cancer research charity. I've
Hello everyone! Does anyone know why Ibrutinib is only available to CLL patients whose previous treatments have been unsuccessful? It was first made routinely available to leukaemia patients through the NHS in 2016, apparently after years of campaigning by Bloodwise, the cancer research charity. I've
bendintheroad1
in
CLL Support
7 years ago
FCR after four years
When I was taken to the hospital with HB of 5.4 and Leukos 20.0 and lots of wrong b Cells, this was 9/2013, I had only little hope to recover again, as I was tested unmutated, CD 38 neg and ZAP 70 of 50% and Trisomie 12. I received 13 packs of Erytrocyt/Concentrate and 6 rounds of FCR. Only minor sideeffects
When I was taken to the hospital with HB of 5.4 and Leukos 20.0 and lots of wrong b Cells, this was 9/2013, I had only little hope to recover again, as I was tested unmutated, CD 38 neg and ZAP 70 of 50% and Trisomie 12. I received 13 packs of Erytrocyt/Concentrate and 6 rounds of FCR. Only minor sideeffects
seoul
in
CLL Support
7 years ago
To have or not to have....
Hi all I've got my appointment this morning to see if I need my 5th FCR. I must admit to feeling nervous and anxious because why shouldn't I have my 5th and 6th sessions, it's what I signed up for on the trial, it might make the difference between a long and a short remission! Then I tell myself to
Hi all I've got my appointment this morning to see if I need my 5th FCR. I must admit to feeling nervous and anxious because why shouldn't I have my 5th and 6th sessions, it's what I signed up for on the trial, it might make the difference between a long and a short remission! Then I tell myself to
sallyplest
in
CLL Support
7 years ago
CLL 11q del, CD38+ unmutated and my bumpy ride during the FCR treatment.
Left the hospital the day after, with more than 40 tablets of cyclophosphamide and
Fludarabine
in my pocket to take the next two days. The same day as the infusion I also got them later that evening, so three consecutive days totally.
Left the hospital the day after, with more than 40 tablets of cyclophosphamide and
Fludarabine
in my pocket to take the next two days. The same day as the infusion I also got them later that evening, so three consecutive days totally.
RemusTh
in
CLL Support
7 years ago
9 month check up post FCR and it seems it was worth the ride!
I don't know about you all, but as I head towards an appointment with the hospital, I become quite nervous and anxious. So last week I was manic in my lead up to my 9 monthly check up.. my house was tidy as I was up at 6 every morning unable to sleep... The day of the appointment arrived and 11.50
I don't know about you all, but as I head towards an appointment with the hospital, I become quite nervous and anxious. So last week I was manic in my lead up to my 9 monthly check up.. my house was tidy as I was up at 6 every morning unable to sleep... The day of the appointment arrived and 11.50
Bethan49
in
CLL Support
7 years ago
3rd cycle FCR done
Hi all! Had a very first and second cycles but just ended first week of third cycle FCR. The hospital part where I got the infusion of Rituxab went fine on Monday, but have been feeling much more tired and weak this time during this first week. Also nausea, but no sickness. Haven't had that previously
Hi all! Had a very first and second cycles but just ended first week of third cycle FCR. The hospital part where I got the infusion of Rituxab went fine on Monday, but have been feeling much more tired and weak this time during this first week. Also nausea, but no sickness. Haven't had that previously
bendintheroad1
in
CLL Support
7 years ago
Bad rash after first CLL chemo.
Just started on a course of FCR 26 days ago I came out in a rash all over my body. It started a few days after my chemo. It is unbearable now and consultant says he has no idea why. Cannot start my next treatment due to this painful rash. I have tried different antihistamines HAs anyone else had
Just started on a course of FCR 26 days ago I came out in a rash all over my body. It started a few days after my chemo. It is unbearable now and consultant says he has no idea why. Cannot start my next treatment due to this painful rash. I have tried different antihistamines HAs anyone else had
Rugbyman13
in
CLL Support
7 years ago
High fever as side effect of Ibrutinib ?
Hi, I'm new here and follow this blog with great interest. I had 6 cycles of FCR 5 years ago which gave me 5 years of a nice remission. For the last 2 years I am on monthly IVIG because of frequent pneumonias. Helped really good. Now my CLL has returned . 4 months ago a low grade fever started , about
Hi, I'm new here and follow this blog with great interest. I had 6 cycles of FCR 5 years ago which gave me 5 years of a nice remission. For the last 2 years I am on monthly IVIG because of frequent pneumonias. Helped really good. Now my CLL has returned . 4 months ago a low grade fever started , about
GIDI
in
CLL Support
7 years ago
Advice with starting FCR
After two years of wait and watch, I have to start treatment this week. Besides drinking lots of fluids what else do you recommend? What should I bring with me for these long treatments? I will be taking anti nausea and other medications to help reduce side effects. I am looking forward to saying
After two years of wait and watch, I have to start treatment this week. Besides drinking lots of fluids what else do you recommend? What should I bring with me for these long treatments? I will be taking anti nausea and other medications to help reduce side effects. I am looking forward to saying
Jemisavs5
in
CLL Support
7 years ago
Choices, choices!! FCR or Trial...?
So 8 years from diagnosis and a past year where I was no longer considering myself Superwoman who had inadvertently created the cure for the common cold...I've had all those missed coughs and colds now and even topped it off with sepsis, and managed to get one very angry tonsil through it all, that complained
So 8 years from diagnosis and a past year where I was no longer considering myself Superwoman who had inadvertently created the cure for the common cold...I've had all those missed coughs and colds now and even topped it off with sepsis, and managed to get one very angry tonsil through it all, that complained
AnjiP
in
CLL Support
7 years ago
FCR
Hello everyone! I am just finishing the 2nd cycle of FCR for my CLL diagnosed 2011. Must say it's not been at all bad ... so far anyway. No sickness at all but did get anti-sick tabs and anti virals, oh and also anti kidney and chest infection tabs. Only negs have been tiredness and some quite bad constipation
Hello everyone! I am just finishing the 2nd cycle of FCR for my CLL diagnosed 2011. Must say it's not been at all bad ... so far anyway. No sickness at all but did get anti-sick tabs and anti virals, oh and also anti kidney and chest infection tabs. Only negs have been tiredness and some quite bad constipation
bendintheroad1
in
CLL Support
7 years ago
Vacation
I have had CLL a couple of years now. I am a year and a half post FCR, and it has worked despite the fact that I am unmutated. I do tend to get infections a great deal, and IVIG helps tremendously. Here is my question. We are heading to Idaho for the lakes and mountains. I worry about infections
I have had CLL a couple of years now. I am a year and a half post FCR, and it has worked despite the fact that I am unmutated. I do tend to get infections a great deal, and IVIG helps tremendously. Here is my question. We are heading to Idaho for the lakes and mountains. I worry about infections
beanlake14
in
CLL Support
7 years ago
Does Tinnitus drive you crazy? Or it it just me?
I have experienced varying degrees of tinnitus over the last decade or so. I may have had CLL for that period too (CLL diagnosed following pre-op assessment for prostate problem in Jan 2015 then 6 cycles FCR and 18 months remission) When I took medical advice (2004?) it was accompanied with dizziness
I have experienced varying degrees of tinnitus over the last decade or so. I may have had CLL for that period too (CLL diagnosed following pre-op assessment for prostate problem in Jan 2015 then 6 cycles FCR and 18 months remission) When I took medical advice (2004?) it was accompanied with dizziness
thelutondodger
in
CLL Support
7 years ago
Hot feet!
I'm on my 4th session FCR. I consider myself lucky has I have only really suffered with terrible nausea. However, I now have started to suffer with bad leg pains and neck pains, also the soles of my heat keep going really hot????
I'm on my 4th session FCR. I consider myself lucky has I have only really suffered with terrible nausea. However, I now have started to suffer with bad leg pains and neck pains, also the soles of my heat keep going really hot????
sallyplest
in
CLL Support
7 years ago
06/28/2017 stop ibrutinib and started venetoclax
My husband, Bill, 55, was diagnosed CLL on Nov 2014, FCR chemotherapy 2016, failed, then Ibrutinib until 2017/06, took Venetoclax 2017/07
My husband, Bill, 55, was diagnosed CLL on Nov 2014, FCR chemotherapy 2016, failed, then Ibrutinib until 2017/06, took Venetoclax 2017/07
wwd-bill
in
CLL Support
7 years ago
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