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6-month post FCR
I'm a little late posting this- as I had no choice but to go back to work which has been EXHAUSTING!!! My Oncologist is happy with my blood levels so he released me to go back 8/1- I'm obviously very happy that my levels are good. Unfortunately, the chemo caused other issues (according to my neurologist
I'm a little late posting this- as I had no choice but to go back to work which has been EXHAUSTING!!! My Oncologist is happy with my blood levels so he released me to go back 8/1- I'm obviously very happy that my levels are good. Unfortunately, the chemo caused other issues (according to my neurologist
rlyndecker
in
CLL Support
8 years ago
4 weeks post FCR
Hi All, been a tough last 10days, 2 hospital visits with one of them an overnight stay. Temperature has been spiking at 39 and still continues to do so. Doctors are pretty convinced its a virus as the blood results and cultures don't show an infection, and that it will eventually clear. In with the Prof
Hi All, been a tough last 10days, 2 hospital visits with one of them an overnight stay. Temperature has been spiking at 39 and still continues to do so. Doctors are pretty convinced its a virus as the blood results and cultures don't show an infection, and that it will eventually clear. In with the Prof
jackhammer
in
CLL Support
8 years ago
FCR stopped after cycle 5
What joy I was told at haematology clinic on Monday that I would not be having cycle 6 of FCR because there was no need. I had responded well and why put more chemo into me when associated with secondary cancer malignancies. For the past 3 cycles my lympocyctes have been below 0.5. Started at 265. Can't
What joy I was told at haematology clinic on Monday that I would not be having cycle 6 of FCR because there was no need. I had responded well and why put more chemo into me when associated with secondary cancer malignancies. For the past 3 cycles my lympocyctes have been below 0.5. Started at 265. Can't
devonrr
in
CLL Support
8 years ago
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Untreated Aussies needing treatment - great clinical trial just for you
I just saw Con Tam at the Peter Mac in Melbourne today - I asked him when he thinks the trial of ibrutinib plus Venetoclax will open here for CLL patients (it's open for MCL and they're all doing well) and he said it's opening for treatment naieve in 3 months. Anyone approaching treatment here really
I just saw Con Tam at the Peter Mac in Melbourne today - I asked him when he thinks the trial of ibrutinib plus Venetoclax will open here for CLL patients (it's open for MCL and they're all doing well) and he said it's opening for treatment naieve in 3 months. Anyone approaching treatment here really
Debinoz
in
CLL Support
8 years ago
FCR Cycle 1
Hi, My dad is on day 2 of cycle 1 of FCR. Should he expect hair loss? If not, great and if yes then how long did it take for hair loss to occur? Thank you
Hi, My dad is on day 2 of cycle 1 of FCR. Should he expect hair loss? If not, great and if yes then how long did it take for hair loss to occur? Thank you
Lena2016
in
CLL Support
8 years ago
Severe anemia
Since diagnosis at the beginning of May I have completed three rounds of FCR treatments. The first cycle went well and before second cycle my blood counts were close to normal (low lymphs). After second cycle everything started to go down and my third round was put off for two weeks while my counts improved
Since diagnosis at the beginning of May I have completed three rounds of FCR treatments. The first cycle went well and before second cycle my blood counts were close to normal (low lymphs). After second cycle everything started to go down and my third round was put off for two weeks while my counts improved
Elremsetay
in
CLL Support
8 years ago
FCR-neutrophils
Hi All, I've just finished 6 rounds of FCR, last infusion 2 weeks ago 13th July.I have been hospitalised twice during rounds 3 and 4 with neutropenic sepsis and then had a rest bite of a further 2 weeks before going on to round 5 for my neutrophils to come up and were at 1.1 on treatment day. My blood
Hi All, I've just finished 6 rounds of FCR, last infusion 2 weeks ago 13th July.I have been hospitalised twice during rounds 3 and 4 with neutropenic sepsis and then had a rest bite of a further 2 weeks before going on to round 5 for my neutrophils to come up and were at 1.1 on treatment day. My blood
jackhammer
in
CLL Support
8 years ago
The unspeakable side effects of a bit of chemo ( bums and faries)
Well, what can I say... Recovering well from the trauma of the first round of FCR BUT now learning that it's not all plain sailing... Having had the most horrendous diarrhoea last week... Sorry for graphic details .... Which was rancid and bright yellow ... Like piccalilli ... I now have the sorest
Well, what can I say... Recovering well from the trauma of the first round of FCR BUT now learning that it's not all plain sailing... Having had the most horrendous diarrhoea last week... Sorry for graphic details .... Which was rancid and bright yellow ... Like piccalilli ... I now have the sorest
Bethan49
in
CLL Support
8 years ago
MY SENSE OF HUMOUR TOOK TO ITS HEELS AND RAN AS FAST AS IT COULD!!!!
Well last Friday was th first round of FCR. I felt quite positive, put on make up and a nice Lacey top to go to the party . All the staff were amazing, loads of reassurance and info... I was ready to go. Took the pills. Fine. Waited to start the infusion and was still quite jovial even though I did
Well last Friday was th first round of FCR. I felt quite positive, put on make up and a nice Lacey top to go to the party . All the staff were amazing, loads of reassurance and info... I was ready to go. Took the pills. Fine. Waited to start the infusion and was still quite jovial even though I did
Bethan49
in
CLL Support
8 years ago
So the party is just about to start!
Just to let you all know that after my appointment in Tuesday I begin FCR on Friday....tomorrow!! I was initially elated as previously have gone through the process to start chemo and then it's been decided to keep me on W&W . I now feel nervous and reality is hitting...did my last day at work
Just to let you all know that after my appointment in Tuesday I begin FCR on Friday....tomorrow!! I was initially elated as previously have gone through the process to start chemo and then it's been decided to keep me on W&W . I now feel nervous and reality is hitting...did my last day at work
Bethan49
in
CLL Support
8 years ago
Importance of Clinical Trials & knowledge
When I failed two of the most widely used standard TX drugs for CLL (
Fludarabine
& Rituxan) because of life threatening reactions I decided I needed a re-evaluation of my Clinical Trial Phase 1 fears.
When I failed two of the most widely used standard TX drugs for CLL (
Fludarabine
& Rituxan) because of life threatening reactions I decided I needed a re-evaluation of my Clinical Trial Phase 1 fears.
ThreeWs
in
CLL Support
8 years ago
Stick or Twist...Not Really.
I was told ASCTs have become unfashionable for CLL, mainly because of the
fludarabine
used in previous treatments not leaving the bone marrow in a very good state, so I shall be happy to report if the CLL has been eradicated by the ASCT as well.
I was told ASCTs have become unfashionable for CLL, mainly because of the
fludarabine
used in previous treatments not leaving the bone marrow in a very good state, so I shall be happy to report if the CLL has been eradicated by the ASCT as well.
zentangle
in
CLL Support
8 years ago
Are there possibilities other than stem cell transplant in Canada for CLL with 11Q deletion?
He underwent chemo end of 2013, but was refractory to
Fludarabine
. He was in remission for about a year and a half. His doctor never mentioned the new drug ABT-199 Venetoclax. She went straight to the possibility of bone marrow transplant.
He underwent chemo end of 2013, but was refractory to
Fludarabine
. He was in remission for about a year and a half. His doctor never mentioned the new drug ABT-199 Venetoclax. She went straight to the possibility of bone marrow transplant.
karenmarie
in
CLL Support
8 years ago
TRIAL OR NOT TO TRIAL, THAT IS THE QUESTION?????
In my last post I mentioned that It looks likely that I will be starting treatment in June. IN the meanwhile, I have been in touch with the consultant who I went to for a second opinion just after diagnosis. He can see me next week with the possibility of starting a trial .... FLAIR. I have read so
In my last post I mentioned that It looks likely that I will be starting treatment in June. IN the meanwhile, I have been in touch with the consultant who I went to for a second opinion just after diagnosis. He can see me next week with the possibility of starting a trial .... FLAIR. I have read so
Bethan49
in
CLL Support
8 years ago
Severe pain so may have to stop Ibrutinib
Many thanks to all who responded to my query re Ibrutinib and Ibuprofen. In the end consultant said not a good idea. Im any case I am still suffering severe muscle pains and have dropped down to only 1/3 dose. If pains continue will have to stop Ibrutinib. Very disappointing. My blood results have improved
Many thanks to all who responded to my query re Ibrutinib and Ibuprofen. In the end consultant said not a good idea. Im any case I am still suffering severe muscle pains and have dropped down to only 1/3 dose. If pains continue will have to stop Ibrutinib. Very disappointing. My blood results have improved
romarin
in
CLL Support
8 years ago
New to this world of CLL
Hi everyone! I am 60 years old and was diagnosed with CLL on April 25th after many blood tests and a biopsy of the right axillary node. I am very active and adventurous... The last couple of years I had lost my zeal for life and was tired all the time. A lump had come up on the back of my neck.. I
Hi everyone! I am 60 years old and was diagnosed with CLL on April 25th after many blood tests and a biopsy of the right axillary node. I am very active and adventurous... The last couple of years I had lost my zeal for life and was tired all the time. A lump had come up on the back of my neck.. I
Jonidleo
in
CLL Support
8 years ago
So it looks like the roller coaster is about to begin...
Only 9 months into diagnosis and W&W, it looks like chemo is about to begin. Symptoms have recently become more problematic with huge nodes in neck restricting my movement, groiin very sore and abdomen tender ion right side. Energy levels have dropped dramatically. Scan shows enlargement of all
Only 9 months into diagnosis and W&W, it looks like chemo is about to begin. Symptoms have recently become more problematic with huge nodes in neck restricting my movement, groiin very sore and abdomen tender ion right side. Energy levels have dropped dramatically. Scan shows enlargement of all
Bethan49
in
CLL Support
8 years ago
Clinic Trail Decision: FCR vs. Ibrutinib/Rituximab
I'm scheduled to start treatment for CLL in a few weeks. I live in the USA and have an opportunity to participate in a randomized clinic trail of FCR vs. Ibrutinib/Rituximab for treatment naive; < 65 years old subjects. The only health issue I have is CLL, (no blood pressure problem, Cholesterol,
I'm scheduled to start treatment for CLL in a few weeks. I live in the USA and have an opportunity to participate in a randomized clinic trail of FCR vs. Ibrutinib/Rituximab for treatment naive; < 65 years old subjects. The only health issue I have is CLL, (no blood pressure problem, Cholesterol,
FarmerGirl00
in
CLL Support
8 years ago
FCR Rounds 5-6
Hi All, Having completed 4 rounds of FCR on the FLAIR trial I unfortunately been hospitalised on the last 2 occasions(rounds 3+4) with some some form of unspecified infection, temperature 38.2 on admission and subsequent blood results showing neutrophils at 0.2-0.4 on both admissions. I had round 4
Hi All, Having completed 4 rounds of FCR on the FLAIR trial I unfortunately been hospitalised on the last 2 occasions(rounds 3+4) with some some form of unspecified infection, temperature 38.2 on admission and subsequent blood results showing neutrophils at 0.2-0.4 on both admissions. I had round 4
jackhammer
in
CLL Support
8 years ago
Under 50 and had FCR?
I am 44 11q and unmuted. I had 18 nodes enlarged and started treatment shortly after diagnosis. I start my last treatment soon. I would like to hear from others who might be similar to me on how long it was until the CLL returned and you needed treatment again. Thanks!
I am 44 11q and unmuted. I had 18 nodes enlarged and started treatment shortly after diagnosis. I start my last treatment soon. I would like to hear from others who might be similar to me on how long it was until the CLL returned and you needed treatment again. Thanks!
Mnance
in
CLL Support
8 years ago
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