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I Have Just Completed My 12 Month CLL Treatment Plan
About 13 months ago, my dentist commented on swollen lymph nodes along my neck and that suggested I have my primary care physician look at them next time I saw her. I did. She referred me to UT Health/MD Anderson, which confirmed that I have CLL. I was placed on Obinutuzumab/Venclexta therapy for
About 13 months ago, my dentist commented on swollen lymph nodes along my neck and that suggested I have my primary care physician look at them next time I saw her. I did. She referred me to UT Health/MD Anderson, which confirmed that I have CLL. I was placed on Obinutuzumab/Venclexta therapy for
DanBro1
in
CLL Support
2 years ago
Tinnitus, vertigo and nausea update
Panicked that I had Ménière’s and then managed to see an ENT and had Audio-vestibular tests at UCLH - which was very thorough - the diagnosis was
chronic
vestibular
migraine
and visual vertigo. The consultant did every test going and said that my symptoms were most consistent with VM.
Panicked that I had Ménière’s and then managed to see an ENT and had Audio-vestibular tests at UCLH - which was very thorough - the diagnosis was
chronic
vestibular
migraine
and visual vertigo. The consultant did every test going and said that my symptoms were most consistent with VM.
ArtyPants46
in
Tinnitus UK
2 years ago
7th time unlucky ❤️
Hey my sweet lovely people hope you are all doing well ❤️ So I had my scan and doctor confirmed what I've already knew in my heart. I wish I didn't know my body so well! Doc was so shocked and disappointed I felt like he was going to cry, the nurse too bless their hearts ❤️ Looking at the bright side
Hey my sweet lovely people hope you are all doing well ❤️ So I had my scan and doctor confirmed what I've already knew in my heart. I wish I didn't know my body so well! Doc was so shocked and disappointed I felt like he was going to cry, the nurse too bless their hearts ❤️ Looking at the bright side
Klndmr
in
Fertility Network UK
2 years ago
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Understanding mechanisms of resistance to Pirtobrutinib in Chronic Lymphocytic Leukaemia
Covalent Bruton Tyrosine Kinase inhibitors (BTKi) like ibrutinib, acalabrutinib and zanubrutinib have completely changed the treatment landscape for CLL. However, a group of patients can develop resistance (most commonly as a result of a BTK C481S mutation) to these effective treatments and require further
Covalent Bruton Tyrosine Kinase inhibitors (BTKi) like ibrutinib, acalabrutinib and zanubrutinib have completely changed the treatment landscape for CLL. However, a group of patients can develop resistance (most commonly as a result of a BTK C481S mutation) to these effective treatments and require further
CLLerinOz
Volunteer
in
CLL Support
2 years ago
Botox injection
My wife 70 suffering from gca from last 6 months, she is on prednisone 10 mg from 60 mg starting , still she have headache, pressure on eye , neurologist ,dr is trying now acetazolamide 250 mg twice and also Botox injection , for headache and eye pressure, Are these medicine and injection are helpfull
My wife 70 suffering from gca from last 6 months, she is on prednisone 10 mg from 60 mg starting , still she have headache, pressure on eye , neurologist ,dr is trying now acetazolamide 250 mg twice and also Botox injection , for headache and eye pressure, Are these medicine and injection are helpfull
Rajuguide
in
PMRGCAuk
2 years ago
Spotting
Hi ladies! You’re all so wonderful and I’m hoping I can pick your brains please! I have been spotting (light brown - sometimes a bit darker) since Monday afternoon. It’s only occasionally and I know spotting is ‘quite normal’, but it’s scaring me quite a bit. My second beta suggests my hcg has almost
Hi ladies! You’re all so wonderful and I’m hoping I can pick your brains please! I have been spotting (light brown - sometimes a bit darker) since Monday afternoon. It’s only occasionally and I know spotting is ‘quite normal’, but it’s scaring me quite a bit. My second beta suggests my hcg has almost
Hopingforbaby_
in
Fertility Network UK
2 years ago
A little update 😃🌻🙏
Heyy my lovely ladies hope you are all well! I just thought I'll share a little update with you all. So HCG on Monday was 684, Wednesday over 1300 which doctor was happy with. As I'm flying back to UK tomorrow he wanted to see me today and did an early scan just for his peace of mind and mine if course
Heyy my lovely ladies hope you are all well! I just thought I'll share a little update with you all. So HCG on Monday was 684, Wednesday over 1300 which doctor was happy with. As I'm flying back to UK tomorrow he wanted to see me today and did an early scan just for his peace of mind and mine if course
Klndmr
in
Fertility Network UK
2 years ago
FET
Does anyone have any advise please. I have never been given any injection or meds to prevent ovulation before I start FET. Is that normal? I don’t have pcos so don’t have regular cycles but my first failed FET I had a dominant follicle and just before starting progesterone was given a hcg trigger?
Does anyone have any advise please. I have never been given any injection or meds to prevent ovulation before I start FET. Is that normal? I don’t have pcos so don’t have regular cycles but my first failed FET I had a dominant follicle and just before starting progesterone was given a hcg trigger?
Bump12
in
Fertility Network UK
2 years ago
Period started 7dpt 5dt
Good day ladies, Just looking for some advice really. I had my first fresh transfer on 30th April. My official test date was supposed to be today. However I started bleeding heavily on day 7 post transfer and this was the exact date that my natural cycle was supposed to start. I couldn’t believe the
Good day ladies, Just looking for some advice really. I had my first fresh transfer on 30th April. My official test date was supposed to be today. However I started bleeding heavily on day 7 post transfer and this was the exact date that my natural cycle was supposed to start. I couldn’t believe the
Tracy45_6
in
Fertility Network UK
2 years ago
Shingles vaccine for cll patients
I'm a high-risk cll thriver on ibrutinib for 6 years with no ill effects and great blood counts. To encourage you, I will add I survived severe covid after a month hospital and 1 week ICU stay. Thanking God. Now I have shingles. I was told not to have a shingles vaccine as it was "live" and could give
I'm a high-risk cll thriver on ibrutinib for 6 years with no ill effects and great blood counts. To encourage you, I will add I survived severe covid after a month hospital and 1 week ICU stay. Thanking God. Now I have shingles. I was told not to have a shingles vaccine as it was "live" and could give
Splashes
in
CLL Support
2 years ago
Horrible migraines
Hello everyone, i used to get migrained every few months or so, i got laser eye surgery and stopped getting migraines for a whole year, until today... i thought i was ok, and if i were to get migraines again they wont be severe. I started to get really bad tunnel vision, i am used to that so i relaxed
Hello everyone, i used to get migrained every few months or so, i got laser eye surgery and stopped getting migraines for a whole year, until today... i thought i was ok, and if i were to get migraines again they wont be severe. I started to get really bad tunnel vision, i am used to that so i relaxed
Kevin160
in
National Migraine Centre
2 years ago
First scan at 5+5: measuring spot on and there is a hearbeat 💓 At what stage they measure the heartbeat frequency?
Hi ladies, yesterday I had a huge scare as my breast tenderness and fullness disappeared all of a sudden. Today then did hcg again and a scan. Not sure about the bloods but the scan went well. One question, when do they measure the heart rate and when is it possible to hear the heartbeat rather that
Hi ladies, yesterday I had a huge scare as my breast tenderness and fullness disappeared all of a sudden. Today then did hcg again and a scan. Not sure about the bloods but the scan went well. One question, when do they measure the heart rate and when is it possible to hear the heartbeat rather that
FrancyItaly
in
Fertility Network UK
2 years ago
Constant headache
Constant headache For the past week I have had a pretty bad headache. I have seen a doctor who examined me for GCA . He didn’t think it was so prescribed co-codamol. At night I wake the pains in the head and under my tongue almost like a cramp. If I take a pain killer I can last till the morning
Constant headache For the past week I have had a pretty bad headache. I have seen a doctor who examined me for GCA . He didn’t think it was so prescribed co-codamol. At night I wake the pains in the head and under my tongue almost like a cramp. If I take a pain killer I can last till the morning
Flrchrs
in
PMRGCAuk
2 years ago
Start of a bfp...? One step strips..
These are my hcg and lh tests, the top 5 are yesterday and the bottom is from this morning (fmu) I think the bottom two both have lines Is this a horrible evap:( or a start of a bfp? Thoughts are appreciated Clear blue early dect was negative so feeling doubtful I have high blood levels of prolactin
These are my hcg and lh tests, the top 5 are yesterday and the bottom is from this morning (fmu) I think the bottom two both have lines Is this a horrible evap:( or a start of a bfp? Thoughts are appreciated Clear blue early dect was negative so feeling doubtful I have high blood levels of prolactin
Charlottem
in
Fertility Network UK
2 years ago
Stopped Nebilet and Candesartan but my HR is pretty low...
So I just have stopped taking both nebilet and Candesartan for about a week but my resting HR is around 50 - 55. However, once I eat white rice and fish, my HR goes up to 80-90 for about 30mins until it goes down to around 65 - 75 that lasts around another 30 minutes But after 1 hour in total or more
So I just have stopped taking both nebilet and Candesartan for about a week but my resting HR is around 50 - 55. However, once I eat white rice and fish, my HR goes up to 80-90 for about 30mins until it goes down to around 65 - 75 that lasts around another 30 minutes But after 1 hour in total or more
SoftLee
in
AF Association
2 years ago
Overshot I think!
I was doing well with the DSNS taper from 4 to 3.5mg at the end of the year (Nov/Dec), even stopping at one point then re-starting when I was not sure of a few niggles. Read a lot on here about Myofascial Pain Syndrome which seemed to fit with my stiff neck, predominantly on the left side which started
I was doing well with the DSNS taper from 4 to 3.5mg at the end of the year (Nov/Dec), even stopping at one point then re-starting when I was not sure of a few niggles. Read a lot on here about Myofascial Pain Syndrome which seemed to fit with my stiff neck, predominantly on the left side which started
Queenie1901
in
PMRGCAuk
2 years ago
11dp5dt negative hpt .. can I still hope?
Dear ladies, Tested this morning bfn on 11dp5dt embryo frozen transfer... had some symptoms ie bloating bladder pressure headache back pain but no sore boobs...from Thursday all them symptoms dissapeared. Only on and off period like pain ... Can I still hope my hcg comes positive or not really?? Im booked
Dear ladies, Tested this morning bfn on 11dp5dt embryo frozen transfer... had some symptoms ie bloating bladder pressure headache back pain but no sore boobs...from Thursday all them symptoms dissapeared. Only on and off period like pain ... Can I still hope my hcg comes positive or not really?? Im booked
Balsora
in
Fertility Network UK - Pregnancy Support
2 years ago
😢 it’s a no go
Hi all, Little update it’s a true squinter of a line this morning so I’ve lost all hope now Thank you so much for all of your kind words and support it means so so much to have you all alongside me for the one of the worst outcomes of this journey that we all put ourselves through I’ve contacted my
Hi all, Little update it’s a true squinter of a line this morning so I’ve lost all hope now Thank you so much for all of your kind words and support it means so so much to have you all alongside me for the one of the worst outcomes of this journey that we all put ourselves through I’ve contacted my
Emilye92x
in
Fertility Network UK
2 years ago
Probable chemical
Hi lovelies, Today is my OTD (11dp5dt) and as pictured I’m 99% sure this round has ended in a chemical and I’m absolutely devastated 😢 I called my clinic this morning and told them about the change in line strength, they’ve told me that a positive is a positive and not to retest and have booked my in
Hi lovelies, Today is my OTD (11dp5dt) and as pictured I’m 99% sure this round has ended in a chemical and I’m absolutely devastated 😢 I called my clinic this morning and told them about the change in line strength, they’ve told me that a positive is a positive and not to retest and have booked my in
Emilye92x
in
Fertility Network UK
2 years ago
Leukemia & Lymphoma Society (USA) provides a LLS Clinical Trial Nurse Navigator to assist you throughout the entire clinical trial process
CLINICAL TRIAL SUPPORT CENTER (CTSC)
https://www.lls.org/support-resources/clinical-trial-support-center-ctsc?c_src Finding a clinical trial can be overwhelming. Patients are often left to search on their own, leaving them with more questions than answers. Fortunately, The Leukemia & Lymphoma
CLINICAL TRIAL SUPPORT CENTER (CTSC)
https://www.lls.org/support-resources/clinical-trial-support-center-ctsc?c_src Finding a clinical trial can be overwhelming. Patients are often left to search on their own, leaving them with more questions than answers. Fortunately, The Leukemia & Lymphoma
lankisterguy
Volunteer
in
CLL Support
2 years ago
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