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Starting FCR
Hi, I'm writing this for my dad he's had CLL 8 years and in the past year he's started developing symptoms (swollen nodes in the neck) his spleen and everything is fine, he was told 6 months ago he needed to start treatment, his bone marrow and bloods came back ok and he's diagnosed as stage 2 , he's
Hi, I'm writing this for my dad he's had CLL 8 years and in the past year he's started developing symptoms (swollen nodes in the neck) his spleen and everything is fine, he was told 6 months ago he needed to start treatment, his bone marrow and bloods came back ok and he's diagnosed as stage 2 , he's
Chelseaxx
in
CLL Support
7 years ago
How many Lupus patients here have been offered biologics?
Hi folks, As some know I had nearly given up fighting Lupus/RA and all the other diagnoses I have. Thankfully, a very kind member mentioned biologics to me. At 52, having been dx since 1989 and after umpteen operations and every medication I was told was available and have taken, I then challenged
Hi folks, As some know I had nearly given up fighting Lupus/RA and all the other diagnoses I have. Thankfully, a very kind member mentioned biologics to me. At 52, having been dx since 1989 and after umpteen operations and every medication I was told was available and have taken, I then challenged
Dragonfly4
in
LUPUS UK
7 years ago
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
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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
Clinical Neurophysiology
Hello folks,wee while since I posted. I have been referred for a Clinical Neurophysiology examination,anyone had this check-up. Was diagnosed with pmr+ 6yrs ago,saw my consultant 10days ago,said he would arrange for a repeat rituximab infusion,but got this notice instead,for the neuro exam. Would appreciate
Hello folks,wee while since I posted. I have been referred for a Clinical Neurophysiology examination,anyone had this check-up. Was diagnosed with pmr+ 6yrs ago,saw my consultant 10days ago,said he would arrange for a repeat rituximab infusion,but got this notice instead,for the neuro exam. Would appreciate
paisleyman74
in
PMRGCAuk
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
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
shoppingtrolley
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
Rituximab and steroid injection 🤔
Hi there , I just had another rituximab infusion a week ago , second s on the 18 th , im still tired but otherwise ok . I had results of an mri from the rheumy which shows 4 slipped discs which is pressing on nerves . She has referred me for a spinal steroid injection for the pain but i was wondering
Hi there , I just had another rituximab infusion a week ago , second s on the 18 th , im still tired but otherwise ok . I had results of an mri from the rheumy which shows 4 slipped discs which is pressing on nerves . She has referred me for a spinal steroid injection for the pain but i was wondering
weathervane
in
LUPUS UK
7 years ago
Chest pain 😡
Been having excruciating chest pain. Mainly left hand side, sometimes above breast and in shoulder, sometimes under breast and also middle of my chest (sternum area). It is normally a very sharp stabbing pain but sometimes a constant ache accompanys this.I took ibruprofen for a few days, had no luck
Been having excruciating chest pain. Mainly left hand side, sometimes above breast and in shoulder, sometimes under breast and also middle of my chest (sternum area). It is normally a very sharp stabbing pain but sometimes a constant ache accompanys this.I took ibruprofen for a few days, had no luck
Charlottelauren
in
LUPUS UK
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
Looking for info from the brainy folks on here!
Looking for information from the great minds on here. I usually just lurk but my doctor really wants me to consider going on Rituximab for my MS. Is anyone on here on it or have been on it? What were your experiences, good, bad and indifferent? I can not do Ocrevous because of the increased breast
Looking for information from the great minds on here. I usually just lurk but my doctor really wants me to consider going on Rituximab for my MS. Is anyone on here on it or have been on it? What were your experiences, good, bad and indifferent? I can not do Ocrevous because of the increased breast
Bygonelines
in
My MSAA Community
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
Reduced transfer factor (KCo 53%, TLCo 54%)
Hi, Just a quick question, if anyone can help please. Letter from rheum says "recent lung function tests showed KCo of 53% and TLCo of 54%, with normal lung volumes" Had CTPA and email stating no PEs. Also had echo which I assume all was alright as nothing back from consultant. I'm 52, have had SLE,
Hi, Just a quick question, if anyone can help please. Letter from rheum says "recent lung function tests showed KCo of 53% and TLCo of 54%, with normal lung volumes" Had CTPA and email stating no PEs. Also had echo which I assume all was alright as nothing back from consultant. I'm 52, have had SLE,
Dragonfly4
in
Lung Conditions Community Forum
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
Rituximab infusion and bad news about back☹️☹️☹️
In ward for 3 course of rituximab infusion . Just had consult with doctor and been told that mri of back shows 4 bulging discs with nerve impingement 😮☹️. She is referring me for spinal nerve injections but that might take 6 mths . Feeling bit low after that news but what can you do , you have to get
In ward for 3 course of rituximab infusion . Just had consult with doctor and been told that mri of back shows 4 bulging discs with nerve impingement 😮☹️. She is referring me for spinal nerve injections but that might take 6 mths . Feeling bit low after that news but what can you do , you have to get
weathervane
in
LUPUS UK
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
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