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At last a bit of hope :)
Thank you to all who have replied, read and tried to advise. My update is as follows, Rheumy going to try me on Rituximab, after Humira failure, also confirmed that my skin problems are vascilitus - finally another confirmation. I had a very detailed appt with the top consultant who was quite amazed
Thank you to all who have replied, read and tried to advise. My update is as follows, Rheumy going to try me on Rituximab, after Humira failure, also confirmed that my skin problems are vascilitus - finally another confirmation. I had a very detailed appt with the top consultant who was quite amazed
beckybooboo
in
NRAS
10 years ago
FCR, FC, or F
Hi everyone: From Japan. I am stage A of CLL, p13 deleted. CD20 positive (not so strong expression). My situation is watch and wait. In Japan, we have only 2000? CLL patients, so hematologist's experience to treat CLL patients is a little. My hematologist told me that let's try fludarabin (F) mono
Hi everyone: From Japan. I am stage A of CLL, p13 deleted. CD20 positive (not so strong expression). My situation is watch and wait. In Japan, we have only 2000? CLL patients, so hematologist's experience to treat CLL patients is a little. My hematologist told me that let's try fludarabin (F) mono
Miee
in
CLL Support
9 years ago
Venetoclax(ABT-199)/rituximab achieved an Overall Rate of Response of 88%
ASH2014 - Clinical Care Options (free to join) capsule update on...
Venetoclax (ABT-199)Plus Rituximab Well Tolerated With Promising Activity in Patients With Relapsed/Refractory CLL
Venetoclax/rituximab achieved ORR of 88% in early investigation and 400 mg identified as the recommended dose for
ASH2014 - Clinical Care Options (free to join) capsule update on...
Venetoclax (ABT-199)Plus Rituximab Well Tolerated With Promising Activity in Patients With Relapsed/Refractory CLL
Venetoclax/rituximab achieved ORR of 88% in early investigation and 400 mg identified as the recommended dose for
AussieNeil
Partner
in
CLL Support
10 years ago
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Norwegian Directorate of Health - Apology
The Norwegian Directorate of Health has apologised for the way in which ME patients in Norway have been treated. This follows the publication of the ground-breaking research from Haukeland University in Bergen. After the publication of the Rituximab study by Fluge et al (2011) and extensive media coverage
The Norwegian Directorate of Health has apologised for the way in which ME patients in Norway have been treated. This follows the publication of the ground-breaking research from Haukeland University in Bergen. After the publication of the Rituximab study by Fluge et al (2011) and extensive media coverage
Ian123
in
Myalgic Encephalomyelitis Community
10 years ago
Dizziness after rituximab infusion
Hi everyone. I had my first rituximab infusion on Tuesday which went really well apart from low blood pressure and feeling hot during the infusion. Felt absolutely fine yesterday but today I feel dizzy and light headed and a bit weird! Has anyone else experienced this atall? Freaking out a little bit
Hi everyone. I had my first rituximab infusion on Tuesday which went really well apart from low blood pressure and feeling hot during the infusion. Felt absolutely fine yesterday but today I feel dizzy and light headed and a bit weird! Has anyone else experienced this atall? Freaking out a little bit
joannebond360
in
LUPUS UK
10 years ago
Updated clinical data may significantly impact treatment of CLL - Jeff Sharman
Here is yet another video interview with Dr Jeff Sharman about how information presented at ASH2014 is anticipated to impact CLL treatment. Here he discusses the impact of idelalisib and ibrutinib on the treatment of relapsed patients and the relevance of FCR treatment in the older population: http:
Here is yet another video interview with Dr Jeff Sharman about how information presented at ASH2014 is anticipated to impact CLL treatment. Here he discusses the impact of idelalisib and ibrutinib on the treatment of relapsed patients and the relevance of FCR treatment in the older population: http:
AussieNeil
Partner
in
CLL Support
9 years ago
Night time Leg Cramps
Hope you are all enjoying a really great Christmas. Been meaning to write about night time leg cramps, an issue that I think affects many of us as SLL/CLL progresses. I’m now at the end of round 1 of FCR treatment, so have some “before and after” experience. Over my 4 years of Watch and Wait, the night
Hope you are all enjoying a really great Christmas. Been meaning to write about night time leg cramps, an issue that I think affects many of us as SLL/CLL progresses. I’m now at the end of round 1 of FCR treatment, so have some “before and after” experience. Over my 4 years of Watch and Wait, the night
Ernest2
in
CLL Support
9 years ago
FLAIR Trial - FCR for me
Apologies first for the slowness of getting my post out here but thankfully the roller-coaster has just slowed down enough for a few words on my progress with the FLAIR trial. As explained before FLAIR compares IR (Ibrutinib plus Rituximab) against FCR (Fludarabine, Cyclophosphamide and Rituximab):
Apologies first for the slowness of getting my post out here but thankfully the roller-coaster has just slowed down enough for a few words on my progress with the FLAIR trial. As explained before FLAIR compares IR (Ibrutinib plus Rituximab) against FCR (Fludarabine, Cyclophosphamide and Rituximab):
Ernest2
in
CLL Support
10 years ago
Vasculitis Education Day December 4th
Just wanted to say that the Vasculitis Education Day in Manchester was excellent. It was attended by about 112 doctors, nurses and patients. ( about 10 patients ) . The speakers were :- Dr Phil Riley - Paediatric and Adolescent Vasculitis Dr Hedley Emsley - Neurological Involvement of Connective Tissue
Just wanted to say that the Vasculitis Education Day in Manchester was excellent. It was attended by about 112 doctors, nurses and patients. ( about 10 patients ) . The speakers were :- Dr Phil Riley - Paediatric and Adolescent Vasculitis Dr Hedley Emsley - Neurological Involvement of Connective Tissue
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
5 weeks into Flair Trial
My husband who has SLL and had been on W & W for just a year, started the Flair Trial at the end of Oct. He was lucky (we hope, after it was called "a wonder drug "by his consultant) and got the Ibrutinib + Rituximab arm. All started well but after 4 days of Ibrutinib and the first Rituximab he contracted
My husband who has SLL and had been on W & W for just a year, started the Flair Trial at the end of Oct. He was lucky (we hope, after it was called "a wonder drug "by his consultant) and got the Ibrutinib + Rituximab arm. All started well but after 4 days of Ibrutinib and the first Rituximab he contracted
annsathome
in
CLL Support
10 years ago
XMAS WISHES FROM DOWN UNDER.
MY FIRST POST. I AM A VERY YOUNG 67 YEAR OLD NUTTY NANNIE FROM NEW ZEALAND. I HAVE BEEN FOLLOWING THIS SITE FOR THE PAST FEW MONTHS. I HAVE FOUND THE INFORMATION AND THE SHARING OF PERSONAL EXPERIENCES A REAL BENEFIT. I WAS DIAGNOSED WITH CLL 30 MONTHS AGO. OWING TO MY INCREASING WHITE CELL COUNT
MY FIRST POST. I AM A VERY YOUNG 67 YEAR OLD NUTTY NANNIE FROM NEW ZEALAND. I HAVE BEEN FOLLOWING THIS SITE FOR THE PAST FEW MONTHS. I HAVE FOUND THE INFORMATION AND THE SHARING OF PERSONAL EXPERIENCES A REAL BENEFIT. I WAS DIAGNOSED WITH CLL 30 MONTHS AGO. OWING TO MY INCREASING WHITE CELL COUNT
nuttynannie1947
in
CLL Support
10 years ago
Blood counts very poor, soon to start BR, and unsure whether to have jabs? (my first attempt to post this message only half worked)
Hi everyone, Thanks for all your responses to my post 3 weeks ago. The blood test results on 10th December were confusing to say the least - WBC had increased from 81.6 to 123.5 since the previous tests at the end of November, while neutrophils, HB and platelets were all slightly improved. My consultant
Hi everyone, Thanks for all your responses to my post 3 weeks ago. The blood test results on 10th December were confusing to say the least - WBC had increased from 81.6 to 123.5 since the previous tests at the end of November, while neutrophils, HB and platelets were all slightly improved. My consultant
Ruhi9
in
CLL Support
10 years ago
Extended Rituximab Plus R-CHOP Best in Elderly, Poor-Prognosis DLBCL
[i]"Elderly patients with poor-prognosis diffuse large B-cell lymphoma (DLBCL) may derive the most benefit from treatment with extended rituximab plus 6 cycles of R-CHOP on a 14-day schedule, according to the results of the SMARTE-R study published in the Journal of Clinical Oncology."[/i] http://www.cancernetwork.com
[i]"Elderly patients with poor-prognosis diffuse large B-cell lymphoma (DLBCL) may derive the most benefit from treatment with extended rituximab plus 6 cycles of R-CHOP on a 14-day schedule, according to the results of the SMARTE-R study published in the Journal of Clinical Oncology."[/i] http://www.cancernetwork.com
AussieNeil
Partner
in
CLL Support
10 years ago
Wuss of the Day
I believe that I should be awarded the title. I don't feel well. Nothing specific, just off. Sick, tired, achey, hot, cold, snuffley, chronic indigestion and full of feeling sorry for myself. I am putting all the blame on this wretched disease. It's not that I have been doing too much (really). It
I believe that I should be awarded the title. I don't feel well. Nothing specific, just off. Sick, tired, achey, hot, cold, snuffley, chronic indigestion and full of feeling sorry for myself. I am putting all the blame on this wretched disease. It's not that I have been doing too much (really). It
DozyDormouse
in
Lung Conditions Community Forum
10 years ago
CLL Treatment
Hello All. I was diagnosed with CLL about 8 years ago and until this year was on 'watch & wait' but in August my spleen had enlarged to the extent that I needed treatment. I had my first round of chemo in September when I was given Bendamustine & Rituximab. The effect was dramatic and within 48 hours
Hello All. I was diagnosed with CLL about 8 years ago and until this year was on 'watch & wait' but in August my spleen had enlarged to the extent that I needed treatment. I had my first round of chemo in September when I was given Bendamustine & Rituximab. The effect was dramatic and within 48 hours
jaypax
in
CLL Support
10 years ago
FLAIR Trial - ErnieUK Baseline Bloods before FCR
As mentioned in my last post, my final baseline bloods just before starting the FCR treatment (please excuse me the underscore characters here to try to make a simple table):
_______________OCT____NOV____DEC_______Units_____Normal Range
Hg___________11.4_____10.6___10.8________g/dL_____Normal
As mentioned in my last post, my final baseline bloods just before starting the FCR treatment (please excuse me the underscore characters here to try to make a simple table):
_______________OCT____NOV____DEC_______Units_____Normal Range
Hg___________11.4_____10.6___10.8________g/dL_____Normal
Ernest2
in
CLL Support
10 years ago
Dr. O'Brien on Trial Design, CT scans and the one and only place for FCR.
Friends, Please check out my blog: http://bkoffman.blogspot.com to hear my last interview from ASCO 2014: Dr. O'Brien Discusses Improved Trial Designs, CT Scans and the role of Chemo-immunotherapy In Frontline Therapy. And if you haven't yet, and have CLL, please complete the survey at https://cllsociety.questionpro.com
Friends, Please check out my blog: http://bkoffman.blogspot.com to hear my last interview from ASCO 2014: Dr. O'Brien Discusses Improved Trial Designs, CT Scans and the role of Chemo-immunotherapy In Frontline Therapy. And if you haven't yet, and have CLL, please complete the survey at https://cllsociety.questionpro.com
bkoffman
CLL CURE Hero
in
CLL Support
10 years ago
Rituximab question
Hi everyone. Have the appointment for my first and second dose of rituximab come through today for 9th and 23rd of December. 2 days before my birthday and two days before Christmas. Just wanted to know if the medicine can wipe you out after infusion and if anyone has experienced this, worried I will
Hi everyone. Have the appointment for my first and second dose of rituximab come through today for 9th and 23rd of December. 2 days before my birthday and two days before Christmas. Just wanted to know if the medicine can wipe you out after infusion and if anyone has experienced this, worried I will
joannebond360
in
LUPUS UK
10 years ago
Vasculitis Education Day, Manchester December 4th.
On December 4th there will be a Vasculitis Education day in Manchester. This education day is aimed at doctors and other medical health professionals. John Mills will one of the speakers, his topic will be " A Patient's Experience' . Other topics covered will be Paediatric/Adolescent
On December 4th there will be a Vasculitis Education day in Manchester. This education day is aimed at doctors and other medical health professionals. John Mills will one of the speakers, his topic will be " A Patient's Experience' . Other topics covered will be Paediatric/Adolescent
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
Atypical CLL
My Dad was diagnosed with CLL but had no symptoms for about 11 years. However, things moved quickly when symptoms did appear. He was started on FCR but it was not as effective as the Dr had hoped. (He had 3 doses.) he then had Rituximab and Bendamustine but again, his lymph nodes and spleen are still
My Dad was diagnosed with CLL but had no symptoms for about 11 years. However, things moved quickly when symptoms did appear. He was started on FCR but it was not as effective as the Dr had hoped. (He had 3 doses.) he then had Rituximab and Bendamustine but again, his lymph nodes and spleen are still
jerryuk
in
CLL Support
10 years ago
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