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But you look so well
This is a picture of me on a cruise with my family. We went to the Canary Islands in June. I use ambulatory oxygen but I took it off for the photo while I waiting to go on the Bumper cars. I had to go in the car with my husband because I took the oxygen off and I would be very breathless walking across
This is a picture of me on a cruise with my family. We went to the Canary Islands in June. I use ambulatory oxygen but I took it off for the photo while I waiting to go on the Bumper cars. I had to go in the car with my husband because I took the oxygen off and I would be very breathless walking across
Maureenpearl
in
LUPUS UK
9 years ago
Husband returning to treatment
After 10 months of well-managed anemia (PRCA), using cyclosporine, my husband's WBC is rising, and he's likely to need CLL treatment again (he had 2 rounds of FCR 2 years ago). We're looking for CLL treatment options that will be less likely to trigger the anemia/blood transfusions.
After 10 months of well-managed anemia (PRCA), using cyclosporine, my husband's WBC is rising, and he's likely to need CLL treatment again (he had 2 rounds of FCR 2 years ago). We're looking for CLL treatment options that will be less likely to trigger the anemia/blood transfusions.
LAinNYC
in
CLL Support
9 years ago
Rituximab side effects
Hi. I had rituximab infusions in feb for ra and was wondering has anyone experienced diarhea as a side effect. I have had it for a few weeks now with stomach pain. Havnt had any other problems since infusions. Would be grateful for any replies.
Hi. I had rituximab infusions in feb for ra and was wondering has anyone experienced diarhea as a side effect. I have had it for a few weeks now with stomach pain. Havnt had any other problems since infusions. Would be grateful for any replies.
jeanette60
in
LUPUS UK
9 years ago
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Do immunosuppressants and sushi mix?
Hey guys a bit if a random question. Met up with a friend at Yo Sushi and had a lovely catch up which was nice because I don’t get to go out that often. However when I came home my tummy was doing stunts and show and I was up all night I’m not sure if Imagined this having this conversation when
Hey guys a bit if a random question. Met up with a friend at Yo Sushi and had a lovely catch up which was nice because I don’t get to go out that often. However when I came home my tummy was doing stunts and show and I was up all night I’m not sure if Imagined this having this conversation when
wotshernameagain
in
LUPUS UK
9 years ago
Why they draw 10 tubes of our bloods and comments on chemo from patients
Friends, This week the CLL Society Inc. finally learned why they need so much blood of ours every time we are seen at a research center. We learned what a biorepository is and how it is changing how CLL research is done. Donna Neuberg, Sc. D. from Dana Farber Cancer Institute is the director of biostatistics
Friends, This week the CLL Society Inc. finally learned why they need so much blood of ours every time we are seen at a research center. We learned what a biorepository is and how it is changing how CLL research is done. Donna Neuberg, Sc. D. from Dana Farber Cancer Institute is the director of biostatistics
bkoffman
CLL CURE Hero
in
CLL Support
9 years ago
Low Platelets
I have just completed my fifth year in remission following four rounds of FCR (2009/10). My latest clinic appointment yesterday showed no significant enlarged nodes, lymphocytes 1.58 and all other blood results well in the normal range except for platelets. These now read 96 and were 112 in April
I have just completed my fifth year in remission following four rounds of FCR (2009/10). My latest clinic appointment yesterday showed no significant enlarged nodes, lymphocytes 1.58 and all other blood results well in the normal range except for platelets. These now read 96 and were 112 in April
Sharastani
in
CLL Support
9 years ago
Delay in repeating Rituximab and total relapse :-(
Hi folks I'm sorry I've not been on ... Sorry for my absence much of which due to my laptop being out of order. Just been looking at recent posts and catching up a bit. I've been in bed virtually at a standstill and mostly housebound since mid June. Seized and flaring the worst I can recall in 20
Hi folks I'm sorry I've not been on ... Sorry for my absence much of which due to my laptop being out of order. Just been looking at recent posts and catching up a bit. I've been in bed virtually at a standstill and mostly housebound since mid June. Seized and flaring the worst I can recall in 20
NeonkittyUK
in
NRAS
9 years ago
Lupus and the sweats
I think I'm not well but not sure what to do. I do have lupus nephritis and recently had rituximab treatment. Unfortunately I had lots of pain during my second infusion. I got upset and the treatment was stopped. I was sent home with no guidance on my next steps in treatment. I did receive a letter from
I think I'm not well but not sure what to do. I do have lupus nephritis and recently had rituximab treatment. Unfortunately I had lots of pain during my second infusion. I got upset and the treatment was stopped. I was sent home with no guidance on my next steps in treatment. I did receive a letter from
Shine44
in
LUPUS UK
9 years ago
The countdown begins
Had my hemp visit yesterday and my WBC is stable at 150k but my platelets have dropped to 127k. Pretty disappointed as all my other numbers have been pretty good all along. We are going to wait 3 months before we make any decisions but if it continues I am looking at treatment in the next 6-12 months
Had my hemp visit yesterday and my WBC is stable at 150k but my platelets have dropped to 127k. Pretty disappointed as all my other numbers have been pretty good all along. We are going to wait 3 months before we make any decisions but if it continues I am looking at treatment in the next 6-12 months
Petey613
in
CLL Support
9 years ago
Good News
I had my monthly appointment with my haematologist this week and received the good news that I am now in remission!!! I was diagnosed with cll at the age of 64 and was on W&W for 10 years and started treatment last September. I had only 3 of a scheduled 6 rounds of Bendamutsine & Rituximab plus an extra
I had my monthly appointment with my haematologist this week and received the good news that I am now in remission!!! I was diagnosed with cll at the age of 64 and was on W&W for 10 years and started treatment last September. I had only 3 of a scheduled 6 rounds of Bendamutsine & Rituximab plus an extra
jaypax
in
CLL Support
9 years ago
Today, I joined CLLSA
I am writing this as a CLL patient with a history of this disease going back to 2008, when I was diagnosed through a 'simple' blood test taken during my yearly check-up. My Internist recommended that I start seeing an Oncologist/Hematologist about a few weeks after he 'discovered' my CLL. This I did.
I am writing this as a CLL patient with a history of this disease going back to 2008, when I was diagnosed through a 'simple' blood test taken during my yearly check-up. My Internist recommended that I start seeing an Oncologist/Hematologist about a few weeks after he 'discovered' my CLL. This I did.
lumdor
in
CLL Support
9 years ago
New treatment
Anyone on Abatacept? I'm due to have my first injection on Friday. All ready tried rituximab, toxciclumab in the last year & been off work since November. Hope this works x
Anyone on Abatacept? I'm due to have my first injection on Friday. All ready tried rituximab, toxciclumab in the last year & been off work since November. Hope this works x
Rachel43
in
NRAS
9 years ago
Rituximab treatment
Had the second of two infusions of the drug Rituximab on Wednesday. I was given Paracetamol and Piriton to take orally first and then an infusion of Prednisolone followed by the Rituximab infusion over several hours. My blood pressure, temperature and oxygen saturation level were monitored every 15
Had the second of two infusions of the drug Rituximab on Wednesday. I was given Paracetamol and Piriton to take orally first and then an infusion of Prednisolone followed by the Rituximab infusion over several hours. My blood pressure, temperature and oxygen saturation level were monitored every 15
Maureenpearl
in
LUPUS UK
9 years ago
Update on Rituximab
A proportion of the test group have seen lasting improvement, so not a cure all but B cell depletion has some promise. How large a proportion are of the phenotype which responds is still in the ongoing research http://www.newscientist.com/article/dn27813-antibody-wipeout-found-to-relieve-chronic-fatigue-syndrome.html
A proportion of the test group have seen lasting improvement, so not a cure all but B cell depletion has some promise. How large a proportion are of the phenotype which responds is still in the ongoing research http://www.newscientist.com/article/dn27813-antibody-wipeout-found-to-relieve-chronic-fatigue-syndrome.html
Ian123
in
Ramsays Disease
9 years ago
Checkpoint Inhibitors - the Programmed Death 1 and Ligand (PD-1/PD-L1) checkpoints and their promise for CLL/SLL
In the last few years, we've seen amazing advances in the approvals of safer, more effective non chemo treatments for CLL/SLL. That momentum doesn't look as if it will stop any time soon, which is a huge improvement on the situation of just a few years ago, when FCR was the only improved treatment to
In the last few years, we've seen amazing advances in the approvals of safer, more effective non chemo treatments for CLL/SLL. That momentum doesn't look as if it will stop any time soon, which is a huge improvement on the situation of just a few years ago, when FCR was the only improved treatment to
AussieNeil
Partner
in
CLL Support
9 years ago
What next?
So it's been 14 months since diagnosis. 14 months of getting absolutely nowhere. Methotrexate made me unbelievably sick, sulpha didn't work, allergic reaction to rituximab and toxi(something or other by infusion I can't remember!!!!!!!!!!!) and now leflonamide is doing absolutely nothing! I have
So it's been 14 months since diagnosis. 14 months of getting absolutely nowhere. Methotrexate made me unbelievably sick, sulpha didn't work, allergic reaction to rituximab and toxi(something or other by infusion I can't remember!!!!!!!!!!!) and now leflonamide is doing absolutely nothing! I have
speersy
in
NRAS
9 years ago
Rituximab hailed as a breakthrough for millions with Chronic Fatigue
A couple of days ago Sue (wroxham) mentioned yuppie flu in response to Ducksoup's post 'Fatigue, frustration and Community':https://healthunlocked.com/cllsupport/posts/131979723/fatigue-frustration-and-community So I was very interested to read two New Scientist articles from early this month, commencing
A couple of days ago Sue (wroxham) mentioned yuppie flu in response to Ducksoup's post 'Fatigue, frustration and Community':https://healthunlocked.com/cllsupport/posts/131979723/fatigue-frustration-and-community So I was very interested to read two New Scientist articles from early this month, commencing
AussieNeil
Partner
in
CLL Support
9 years ago
The Future Role of FCR and new data on venetoclax and rituximab
Dear friends, This week on the CLL Society website we bring the second part of our interview with Professor Michael Hallek of Koln, Germany, the director of the German CLL Study Group and a major CLL researcher and thinker. He starts by discussing his “fast boat” adaptive trial strategy (similar in
Dear friends, This week on the CLL Society website we bring the second part of our interview with Professor Michael Hallek of Koln, Germany, the director of the German CLL Study Group and a major CLL researcher and thinker. He starts by discussing his “fast boat” adaptive trial strategy (similar in
bkoffman
CLL CURE Hero
in
CLL Support
9 years ago
What next
Hi all Since February 2014 my RA has not been controlled. I had rituximab last August (which failed) and in March of this year I started toxciclumab injection. Today I've received the news I didn't want to hear I have to stop it. I had injection weekly for 4 weeks then my white count dropped. They stopped
Hi all Since February 2014 my RA has not been controlled. I had rituximab last August (which failed) and in March of this year I started toxciclumab injection. Today I've received the news I didn't want to hear I have to stop it. I had injection weekly for 4 weeks then my white count dropped. They stopped
Rachel43
in
NRAS
9 years ago
For Refractory CLL, Venetoclax's (ABT-199's) Complete Response Rate Is Tops
[i]"The combination therapy of the novel anti-BCL-2 drug venetoclax (formerly ABT-199/GDC-0199, AbbVie, Genentech) and rituximab shows encouraging results in the treatment of refractory chronic lymphocytic leukemia (CLL), according to early results from an ongoing clinical trial. The complete response
[i]"The combination therapy of the novel anti-BCL-2 drug venetoclax (formerly ABT-199/GDC-0199, AbbVie, Genentech) and rituximab shows encouraging results in the treatment of refractory chronic lymphocytic leukemia (CLL), according to early results from an ongoing clinical trial. The complete response
AussieNeil
Partner
in
CLL Support
9 years ago
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