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Cyclophosphamide
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FCR 18 months later
I finished up 4 rounds of FCR in March of 2015. I realize it is not always suggested for unmutated patients, but I had it anyway. I am Zap 70, trisomy 12, CD 38 positive. Except for infection issues, for which I receive IVIG, I am doing great. I am wondering if anyone else who is unmutated received
I finished up 4 rounds of FCR in March of 2015. I realize it is not always suggested for unmutated patients, but I had it anyway. I am Zap 70, trisomy 12, CD 38 positive. Except for infection issues, for which I receive IVIG, I am doing great. I am wondering if anyone else who is unmutated received
beanlake14
in
CLL Support
7 years ago
FCR DIET?
I'm at end of first week/4th cycle. Don't eat meat but do eat dairy (butter/cheese). Hearing on here about FCR diet. What is that please? Get well everybody!
I'm at end of first week/4th cycle. Don't eat meat but do eat dairy (butter/cheese). Hearing on here about FCR diet. What is that please? Get well everybody!
bendintheroad1
in
CLL Support
7 years ago
In the arms of an angel
Three days ago my beloved father passed away peacefully in his sleep. He is now in a better place, resting, free of pain. I want to thank all of you for your precious help, especially Chis and Neil, and wish all the best with your treatments. Here is the CLL journey of my father: October 2015- Dx with
Three days ago my beloved father passed away peacefully in his sleep. He is now in a better place, resting, free of pain. I want to thank all of you for your precious help, especially Chis and Neil, and wish all the best with your treatments. Here is the CLL journey of my father: October 2015- Dx with
NickiePaG
in
CLL Support
7 years ago
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What next
OH has now had 4 cycles of FCR, and last blood test show almost complete (but not quite total) success. Haematologist is now saying stop, as treatment is more toxic than residual problem. Question - any ideas how long a remission is likely to last? Also how long before he is going to be firing on
OH has now had 4 cycles of FCR, and last blood test show almost complete (but not quite total) success. Haematologist is now saying stop, as treatment is more toxic than residual problem. Question - any ideas how long a remission is likely to last? Also how long before he is going to be firing on
Hidden
in
CLL Support
7 years ago
FlAIR trial screening advised for me follow up to previous posts.
Hi everyone after several consultations with my centre of care and a second opinion I am going for FLAIR screening permitting. Treatment needed now was difficult for me to accept as I have no symptoms and feel great. My genetic tests so far are good 17p non deleted still waiting for IgVH.So first line
Hi everyone after several consultations with my centre of care and a second opinion I am going for FLAIR screening permitting. Treatment needed now was difficult for me to accept as I have no symptoms and feel great. My genetic tests so far are good 17p non deleted still waiting for IgVH.So first line
annmcgowan
in
CLL Support
7 years ago
Starting FCR for CLL
Has anyone done an FCR treatment and if so how were the side effects? Any warnings about FCR that should steer away from going through with treatment?
Has anyone done an FCR treatment and if so how were the side effects? Any warnings about FCR that should steer away from going through with treatment?
Fbarcia
in
CLL Support
7 years ago
CLL with p53,17 deletion
Hello, my husband has CLL with a p53 and 17 deletion. He has a failed FCR. Our Doctor has ordered Ibrutinib for him to begin 2 tabs daily this week. Does insurance and Medicare recognize this as chemo? Is it covered? If you've taken Ibrutinib, we would appreciate hearing from you. Sincerely, farrpottery
Hello, my husband has CLL with a p53 and 17 deletion. He has a failed FCR. Our Doctor has ordered Ibrutinib for him to begin 2 tabs daily this week. Does insurance and Medicare recognize this as chemo? Is it covered? If you've taken Ibrutinib, we would appreciate hearing from you. Sincerely, farrpottery
Farrpottery
in
CLL Support
7 years ago
Latest update....
Wow where do I start, so much seems to have happened in the last couple of weeks. Whilst hubby was having transfusions his HB markers were climbing....100 two weeks ago....went back for blood tests on Wednesday.....HB dropped to 96 (no transfusion for 2 weeks) and Platelets have climbed from 76 to 276
Wow where do I start, so much seems to have happened in the last couple of weeks. Whilst hubby was having transfusions his HB markers were climbing....100 two weeks ago....went back for blood tests on Wednesday.....HB dropped to 96 (no transfusion for 2 weeks) and Platelets have climbed from 76 to 276
Susiecarer
in
CLL Support
7 years ago
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
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
Hidden
in
CLL Support
7 years ago
Vasculitis UK AGM May 2017 - Reflective View in Photos
Dr Jeremy Royle, Nottingham QE, discussed his recent trip to the Annual International Vasculitis Conference in Japan and his latest research study "Oral
Cyclophosphamide
v IV
Cyclophosphamide
".
Dr Jeremy Royle, Nottingham QE, discussed his recent trip to the Annual International Vasculitis Conference in Japan and his latest research study "Oral
Cyclophosphamide
v IV
Cyclophosphamide
".
Suzym2u
Vasculitis UK
in
Vasculitis UK
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
Churg Strauss Struggles
Cyclophosphamide
is gold standard treatment but not sure if OK with kidney issues? I know it is a difficult disease to A) diagnose and B) treat but does anyone have experience of being told the same by their consultants that this is what remission may look like??
Cyclophosphamide
is gold standard treatment but not sure if OK with kidney issues? I know it is a difficult disease to A) diagnose and B) treat but does anyone have experience of being told the same by their consultants that this is what remission may look like??
meganoscar123
in
Lung Conditions Community Forum
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
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
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