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Hello from CT
Newly diagnosed 50 year old male from Connecticut with CLL. Awaiting the results of the FISH test. Just wanted to thank everyone for the knowledge here as I have been reading and reading non stop. I am sure I will be asking many questions as I move forward but right now trying to learn everything I
Newly diagnosed 50 year old male from Connecticut with CLL. Awaiting the results of the FISH test. Just wanted to thank everyone for the knowledge here as I have been reading and reading non stop. I am sure I will be asking many questions as I move forward but right now trying to learn everything I
controlsct
in
CLL Support
3 years ago
CAPD and PAIN
Hi My First post here, sorry if I screw up. I had a standard CAPD line inserted and then all training and a Baxter machine to receive APD. But the line never worked very well. The doctors decided that it was because I am so tall (6'2" is not that unusual?) Anyway the faulty line was removed and a
Hi My First post here, sorry if I screw up. I had a standard CAPD line inserted and then all training and a Baxter machine to receive APD. But the line never worked very well. The doctors decided that it was because I am so tall (6'2" is not that unusual?) Anyway the faulty line was removed and a
GeoffJ
in
Kidney Dialysis
3 years ago
Richter's Transformation
Hi Andreag555, Sorry to hear about your father RT diagnosis. Quick background on myself. Dx'd with CLL in 2014. Various lines of treatment. Heavely treated with about 6 treatments one after the other(Sorry chemo brain keeps me from remembering all of them!) Was on Venetolclax in 2018. Diagnosed with
Hi Andreag555, Sorry to hear about your father RT diagnosis. Quick background on myself. Dx'd with CLL in 2014. Various lines of treatment. Heavely treated with about 6 treatments one after the other(Sorry chemo brain keeps me from remembering all of them!) Was on Venetolclax in 2018. Diagnosed with
Feisal
in
CLL Support
3 years ago
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Update on my ABCDE minus L diet for fighting CLL
Four months ago, I posted that I was embarking on, what I called the "ABCDE minus L diet" for fighting CLL. See: https://healthunlocked.com/cllsupport/posts/144613625/the-abcde-minus-l-diet-for-fighting-cll Briefly. I am at the "watch and worry" stage with my CLL. I am eating and drinking the following
Four months ago, I posted that I was embarking on, what I called the "ABCDE minus L diet" for fighting CLL. See: https://healthunlocked.com/cllsupport/posts/144613625/the-abcde-minus-l-diet-for-fighting-cll Briefly. I am at the "watch and worry" stage with my CLL. I am eating and drinking the following
HowardR
in
CLL Support
3 years ago
Lupus life insurance is it possible!
Hi everyone, it’s been a very long time since I’ve posted anything on this forum. Hope you’re all as well as you can possibly be, if not I hope you feel better soon. I have a question for you all and although it’s through the possible worst pandemic this country has been through, I would like to ask
Hi everyone, it’s been a very long time since I’ve posted anything on this forum. Hope you’re all as well as you can possibly be, if not I hope you feel better soon. I have a question for you all and although it’s through the possible worst pandemic this country has been through, I would like to ask
Wolf_1
in
LUPUS UK
3 years ago
Has anyone had more than one FISH test?
I’ve been on IB for two years and 17p deleted and was wondering if the genetic mutations could change? I asked my oncologist and he said if I did the stem cell transplant he would request it but have any of you had a second test?
I’ve been on IB for two years and 17p deleted and was wondering if the genetic mutations could change? I asked my oncologist and he said if I did the stem cell transplant he would request it but have any of you had a second test?
steve_canada
in
CLL Support
3 years ago
Covid trial in UK examines mixing different vaccines
A UK trial has been launched to see if giving people different Covid vaccines for their first and second doses works as well as the current approach of using the same type of vaccine twice. The idea is to provide more flexibility with vaccine rollout and help deal with any potential disruption to supplies
A UK trial has been launched to see if giving people different Covid vaccines for their first and second doses works as well as the current approach of using the same type of vaccine twice. The idea is to provide more flexibility with vaccine rollout and help deal with any potential disruption to supplies
Jm954
Administrator
in
CLL Support
3 years ago
Strange case of CLL remission
Hello wonderful people! I have shared my father's second treatment of CLL with BR over a year ago. His case was interesting and i would like to share what happened and if anyone can comment or shed some light on it. He was diagnosed with CLL in 2007. W&W till early 2011. He was supposed to do the regular
Hello wonderful people! I have shared my father's second treatment of CLL with BR over a year ago. His case was interesting and i would like to share what happened and if anyone can comment or shed some light on it. He was diagnosed with CLL in 2007. W&W till early 2011. He was supposed to do the regular
mkawass
in
CLL Support
3 years ago
How long after hysteroscopy did you start treatment?
Morming lovelys for anyone who had a polyp removal before next cycle how long did you wait for your biopsy results? My clinic wont let me start untill i have the results. Also how long after your hysteroscopy did you work out? I'm desperate to go for a run. Thanks guys xxx
Morming lovelys for anyone who had a polyp removal before next cycle how long did you wait for your biopsy results? My clinic wont let me start untill i have the results. Also how long after your hysteroscopy did you work out? I'm desperate to go for a run. Thanks guys xxx
slupton
in
Fertility Network UK
4 years ago
Webinar - Living well with CLL - 3.30pm Monday 15th Feb
Lymphoma Action and Leukaemia Care are back with their next joint webinar on Monday 15th February 2021 at 3,30pm Please join to explore strategies that may aid you to live well with a CLL diagnosis, regardless of what stage of the journey you may be at. The experienced panel of clinicians and patients
Lymphoma Action and Leukaemia Care are back with their next joint webinar on Monday 15th February 2021 at 3,30pm Please join to explore strategies that may aid you to live well with a CLL diagnosis, regardless of what stage of the journey you may be at. The experienced panel of clinicians and patients
Jm954
Administrator
in
CLL Support
3 years ago
Richter’s Transformation - Results of my Pseudo Richter Human Genome study
Hi. As I mentioned earlier, Professor Elias Campo did a study of my Ricther to try to understand the behavior I copy and paste the result Our cases are helping that Richter's transformation is not the great unknown within the world of CLL. We have sequenced the entire genome of the CLL and the lymph
Hi. As I mentioned earlier, Professor Elias Campo did a study of my Ricther to try to understand the behavior I copy and paste the result Our cases are helping that Richter's transformation is not the great unknown within the world of CLL. We have sequenced the entire genome of the CLL and the lymph
Priss69
in
CLL Support
3 years ago
Self-introduction
Hi, I'm a 72-year-old USA male, no symptoms, but diagnosed a month ago with CLL through routine blood workup (plus the usual FISH-followup after high WBC noted). So I've been reading assiduously, and trying to figure out when/how to assemble a team. For me it's W&W, with another blood assay in 3 months
Hi, I'm a 72-year-old USA male, no symptoms, but diagnosed a month ago with CLL through routine blood workup (plus the usual FISH-followup after high WBC noted). So I've been reading assiduously, and trying to figure out when/how to assemble a team. For me it's W&W, with another blood assay in 3 months
Felixgratus
in
CLL Support
3 years ago
Surgery soon
Hi guys, I've got a hysteroscopy booked for Friday for polyp removal and biopsy. I've just been told its a general anesthetic and im now panicking. Please if any of you have had the same under general please let me know thanks xx
Hi guys, I've got a hysteroscopy booked for Friday for polyp removal and biopsy. I've just been told its a general anesthetic and im now panicking. Please if any of you have had the same under general please let me know thanks xx
slupton
in
Fertility Network UK
4 years ago
Richter's Syndrome! One pill, Triple Combination Therapy is in clinical trial for Richter’s Transformation & De Novo Large B-Cell Lymphoma
Richter's Syndrome! One pill, Triple Combination Therapy is in clinical trial for Richter’s Transformation and De Novo Large B-Cell Lymphoma with impressive results. In this ASH 2020 In this video Dr. Mato tells us that his clinical trial introduces the concept of “synthetic lethality,” where multiple
Richter's Syndrome! One pill, Triple Combination Therapy is in clinical trial for Richter’s Transformation and De Novo Large B-Cell Lymphoma with impressive results. In this ASH 2020 In this video Dr. Mato tells us that his clinical trial introduces the concept of “synthetic lethality,” where multiple
bkoffman
CLL CURE Hero
in
CLL Support
3 years ago
Bladder Cancer with CLL
CLL since 2012 ( Ibrutinib 5 years , Gayzva 6 months , Acalabrutinib 2 years ) now bladder cancer , high grade , no wall penetration .... advised to take BCG for 6 weeks every 3 months for a year ... anyone shed light on what I can physically expect from the BCG ?
CLL since 2012 ( Ibrutinib 5 years , Gayzva 6 months , Acalabrutinib 2 years ) now bladder cancer , high grade , no wall penetration .... advised to take BCG for 6 weeks every 3 months for a year ... anyone shed light on what I can physically expect from the BCG ?
fish61
in
CLL Support
3 years ago
Advice required - New to thyroid problems
I experienced a rectal bleed in 2016 and was found to have
colonic
polyps
and diverticulitis. A video capsule endoscopy early this year revealed biliary gastritis. My joint pain continued together with the other symptoms . Now my joint pain is worse, particularly in my feet and hands .
I experienced a rectal bleed in 2016 and was found to have
colonic
polyps
and diverticulitis. A video capsule endoscopy early this year revealed biliary gastritis. My joint pain continued together with the other symptoms . Now my joint pain is worse, particularly in my feet and hands .
Ophelia1
in
Thyroid UK
4 years ago
Richter Syndrome
Hello Everybody, My boyfriend was just diagnosed with Richter Syndrome about 2 hours ago. Those have been 2 hours where I have felt myself losing my mind! They told him not to google anything in regards to the diagnosis as they are doing more tests. Of course, I didn’t listen! Everything I have read
Hello Everybody, My boyfriend was just diagnosed with Richter Syndrome about 2 hours ago. Those have been 2 hours where I have felt myself losing my mind! They told him not to google anything in regards to the diagnosis as they are doing more tests. Of course, I didn’t listen! Everything I have read
Bee4028
in
CLL Support
3 years ago
CEV letter v2.0, NI edition.
So lots of posts on here from people getting CEV letters again. Mostly England I think however our wee country got to deal with the serious arguments about transfer tests (I guess they are, not if you're youngest is 20 though) before they issue the guidance and letters. Just yesterday, Friday 8th I received
So lots of posts on here from people getting CEV letters again. Mostly England I think however our wee country got to deal with the serious arguments about transfer tests (I guess they are, not if you're youngest is 20 though) before they issue the guidance and letters. Just yesterday, Friday 8th I received
Belfastbees
in
CLL Support
3 years ago
Polyp removal soon
Hi you lovely ladies, so I finally have a date for my polyp removal its in 17 days! I can start my cycle after hopefully. Im really nervous if anyones had a polyp removed please let me know how it went and how soon you could start the treatment? Thank you xx
Hi you lovely ladies, so I finally have a date for my polyp removal its in 17 days! I can start my cycle after hopefully. Im really nervous if anyones had a polyp removed please let me know how it went and how soon you could start the treatment? Thank you xx
slupton
in
Fertility Network UK
4 years ago
Expert Answers to Frequently Asked Questions About Chronic Lymphocytic Leukemia and COVID-19, including vaccination
Interesting 'conversation' with CLL experts on a variety of topics including: Do patients with CLL have worse outcomes if they develop COVID‑19? Are data available on COVID-19 outcomes in younger patients with CLL? Would it be possible for CLL-associated lymphocytosis to counteract COVID-19–associated
Interesting 'conversation' with CLL experts on a variety of topics including: Do patients with CLL have worse outcomes if they develop COVID‑19? Are data available on COVID-19 outcomes in younger patients with CLL? Would it be possible for CLL-associated lymphocytosis to counteract COVID-19–associated
Jm954
Administrator
in
CLL Support
3 years ago
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