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CLL Patients -- Venclexta
I am looking for CLL patients in the U.S. who have been diagnosed within 3-4 years and who are taking Venclexta as their treatment. I work with an organization (Patient Power) that shares patient stories to help advocate and educate others on various cancers. By sharing your journey, you can help support
I am looking for CLL patients in the U.S. who have been diagnosed within 3-4 years and who are taking Venclexta as their treatment. I work with an organization (Patient Power) that shares patient stories to help advocate and educate others on various cancers. By sharing your journey, you can help support
AlexCam
in
CLL Support
7 months ago
New to the group. Should I worry concerning my latest blood results?
New to the group. First post even if I regularly read what is posted. Dx in March 2023. But CLL for at least 2 years. Unmutated, triso 12 and q (14,19). On W&W. 53 years old. I had an appointment with my Cll doctor one month ago and a bit worried. Wbc 48 000 Monocytes 12000 ALC 29 000 LDH 550 I understood
New to the group. First post even if I regularly read what is posted. Dx in March 2023. But CLL for at least 2 years. Unmutated, triso 12 and q (14,19). On W&W. 53 years old. I had an appointment with my Cll doctor one month ago and a bit worried. Wbc 48 000 Monocytes 12000 ALC 29 000 LDH 550 I understood
povhgc
in
CLL Support
7 months ago
confused!!!
hi everyone hope you are all as well as you could be!!! I’m struggling big time now! I have a strange situation which I wonder if anyone else has? I became unwell end of July this year , tests started and diagnosed CLL it took a further few tests like MRI CT Scan and bone marrow biopsy only to be told
hi everyone hope you are all as well as you could be!!! I’m struggling big time now! I have a strange situation which I wonder if anyone else has? I became unwell end of July this year , tests started and diagnosed CLL it took a further few tests like MRI CT Scan and bone marrow biopsy only to be told
Dragonfly766
in
CLL Support
7 months ago
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Transformation of Richter's Transformation Treatment to combination targeted therapy - tislelizumab +zanubrutinib (ASH 2023)
Richter's Transformation treatments are typically fixed term R-CHOP*, or modifications of that chemoimmunity therapy. So it's encouraging to hear that [i]"In a phase 2 trial, anti-PD-1 inibitor tislelizumab + next gen BTK inhibitor zanubrutinib had an overall response rate of 58.3% in patients with Richter's
Richter's Transformation treatments are typically fixed term R-CHOP*, or modifications of that chemoimmunity therapy. So it's encouraging to hear that [i]"In a phase 2 trial, anti-PD-1 inibitor tislelizumab + next gen BTK inhibitor zanubrutinib had an overall response rate of 58.3% in patients with Richter's
AussieNeil
Partner
in
CLL Support
7 months ago
just some advice
hi lovely friends so I went for my bloods on Tuesday the doctor phoned me on Wednesday to say my platelets have gone hi so they have upped my dose 90mg pegsy and 45 mg the next wk to alternate, the doctor has advised me that going on another medication hydroxide I think it’s called , am always so tired
hi lovely friends so I went for my bloods on Tuesday the doctor phoned me on Wednesday to say my platelets have gone hi so they have upped my dose 90mg pegsy and 45 mg the next wk to alternate, the doctor has advised me that going on another medication hydroxide I think it’s called , am always so tired
Staroftheday
in
MPN Voice
11 months ago
AI and CLL
it hasn’t really been covered here yet, but AI and ML is beginning to influence medicine. With all the big techs chasing AI development, the ability for AI to discover new novel proteins at a rate beyond what could ever happen in a lab. We are likely to see an uptick in treatments and maybe even cures
it hasn’t really been covered here yet, but AI and ML is beginning to influence medicine. With all the big techs chasing AI development, the ability for AI to discover new novel proteins at a rate beyond what could ever happen in a lab. We are likely to see an uptick in treatments and maybe even cures
MovingForward4423
in
CLL Support
7 months ago
B LARGE CELL DIFFUSE LYMPHOMA AFTER 5 YEAR OF POST KIDNEY TRANSPLANT
I got my kidney transplant in dec 2018 now In nov 2024 suffered from NON hodgkin lymphoma now only on tacrolimus 5mg daily .Any advice regarding this then plz
I got my kidney transplant in dec 2018 now In nov 2024 suffered from NON hodgkin lymphoma now only on tacrolimus 5mg daily .Any advice regarding this then plz
bal_123
in
Kidney Transplant Patient Support
4 months ago
Anyone taking Qulipta for chronic migraine and finding some relief with Behçet's gi issues?
I was prescribed Qulipta for
chronic
migraine
last June, and have been taking it since then. A sideeffect has been pretty severe constipation, which can be problematic in its own right.
I was prescribed Qulipta for
chronic
migraine
last June, and have been taking it since then. A sideeffect has been pretty severe constipation, which can be problematic in its own right.
Mja75
in
Behçet's UK
1 year ago
How you can help make ibrutinib plus venetoclax fixed duration therapy a reality for Australians with previously untreated CLL
In Australia, no new medicine can be listed on the Pharmaceutical Benefits Scheme (PBS) unless it has first been recommended by the Pharmaceutical Benefits Advisory Committee (PBAC). In March 2024, PBAC will again consider a submission to recommend a 15-month combination therapy of ibrutinib plus venetoclax
In Australia, no new medicine can be listed on the Pharmaceutical Benefits Scheme (PBS) unless it has first been recommended by the Pharmaceutical Benefits Advisory Committee (PBAC). In March 2024, PBAC will again consider a submission to recommend a 15-month combination therapy of ibrutinib plus venetoclax
CLLerinOz
Administrator
in
CLL Support
7 months ago
symptoms of CLL
I was diagnosed w CLL in Dec 2019. I’m on a watch and wait protocol with blood work every 6 months. My question is if I’m not on any meds yet, can I still have symptoms of occasional extreme fatigue, recurrent infections and sometimes feeling like I’m always fighting off something? Is this caused by
I was diagnosed w CLL in Dec 2019. I’m on a watch and wait protocol with blood work every 6 months. My question is if I’m not on any meds yet, can I still have symptoms of occasional extreme fatigue, recurrent infections and sometimes feeling like I’m always fighting off something? Is this caused by
RockymtnTexan
in
CLL Support
7 months ago
new to Group
hello, I’m New to this group. I’m hoping for some basic information regarding how you live with leukemia. I have chronic kidney disease. I received a deceased donor transplant 13 months ago. My transplant team has had real difficulty dealing with dangerously low white blood cell count. I’ve received
hello, I’m New to this group. I’m hoping for some basic information regarding how you live with leukemia. I have chronic kidney disease. I received a deceased donor transplant 13 months ago. My transplant team has had real difficulty dealing with dangerously low white blood cell count. I’ve received
Jayhawker
in
CLL Support
7 months ago
Richter's Transformation: standardized therapy or clinical trial
My father was diagnosed CLL 4 years ago and hasn't been treated. Recently he did a PET CT because of enlarged lmpth nodes and doctor said it's very possible he has Richter's Transformation. May I know if any one has same experience with Richters but not treated before? Could you share the treatment and
My father was diagnosed CLL 4 years ago and hasn't been treated. Recently he did a PET CT because of enlarged lmpth nodes and doctor said it's very possible he has Richter's Transformation. May I know if any one has same experience with Richters but not treated before? Could you share the treatment and
janeychen5712
in
CLL Support
8 months ago
update: Zanabrutinib vs Obenven (O&V)
We are praying for Gods wisdom (James1:5), and we’re leaning toward the Zanabrutinib. The infusions and time and distance will be impactful to my husbands work and he’s prefer to go the simpler route. We learned he’s still 13Q and TP53 negative and his lymph nodes are reduced (we have used ALT for
We are praying for Gods wisdom (James1:5), and we’re leaning toward the Zanabrutinib. The infusions and time and distance will be impactful to my husbands work and he’s prefer to go the simpler route. We learned he’s still 13Q and TP53 negative and his lymph nodes are reduced (we have used ALT for
Cb1391
in
CLL Support
8 months ago
My Ckd journey
Hi my name is Dineshwaran.i was diagnosed with kidney failure in year 2003 when I was 19.was on dialysis for two years and did transplant on 2005. Donated by my cousin.it was a perfect match until 2017 where my sugar level was very high. Was on all type of medication and insulin but didn't came down
Hi my name is Dineshwaran.i was diagnosed with kidney failure in year 2003 when I was 19.was on dialysis for two years and did transplant on 2005. Donated by my cousin.it was a perfect match until 2017 where my sugar level was very high. Was on all type of medication and insulin but didn't came down
Dineshwaran
in
Kidney Dialysis
4 months ago
CLL leukemia
What does it mean when your white blood count increases from 27 to 30.6 10^9/L 4.0-10.0 10^9/L
What does it mean when your white blood count increases from 27 to 30.6 10^9/L 4.0-10.0 10^9/L
Bobby13
in
CLL Support
8 months ago
FDA Investigating 'Serious Risk' of Malignancy After CAR-T Therapy - Applies to all approved therapies, but benefits still outweigh risks
From MedPage Today, by Charles Bankhead, Senior Editor, MedPage Today November 28, 2023, Last Updated November 29, 2023. Posted FYI without comment: [i]
FDA Investigating 'Serious Risk' of Malignancy After CAR-T Therapy - Applies to all approved therapies, but benefits still outweigh risks, agency
From MedPage Today, by Charles Bankhead, Senior Editor, MedPage Today November 28, 2023, Last Updated November 29, 2023. Posted FYI without comment: [i]
FDA Investigating 'Serious Risk' of Malignancy After CAR-T Therapy - Applies to all approved therapies, but benefits still outweigh risks, agency
cujoe
in
CLL Support
8 months ago
looking for a neurologist
Can anyone recommend a neurologist knowledgeable in RLS in the Bristol/ Bath (England) area ? I currently have a neurologist whom I rate quite highly but who cannot prescribe opioids as they are not on the formulary of the hospital where she practises. She has however asked my GP to prescribe Oxycodone
Can anyone recommend a neurologist knowledgeable in RLS in the Bristol/ Bath (England) area ? I currently have a neurologist whom I rate quite highly but who cannot prescribe opioids as they are not on the formulary of the hospital where she practises. She has however asked my GP to prescribe Oxycodone
etchea33
in
Restless Legs Syndrome
5 months ago
PMR and brachial neuritis
It looks like I have developed a fairly rare condition called Parsonage-Turner syndrome (PTS), also called brachial neuritis. It started with terrible pain in the shoulder, so initially I thought it would appear in the other shoulder and be the beginning of a PMR relapse. But it is taking a different
It looks like I have developed a fairly rare condition called Parsonage-Turner syndrome (PTS), also called brachial neuritis. It started with terrible pain in the shoulder, so initially I thought it would appear in the other shoulder and be the beginning of a PMR relapse. But it is taking a different
dmart7
in
PMRGCAuk
5 months ago
CLL and now very elevated Monocytes
I am under treatment for CLL using Venetoclax. It has been going well and my lymphocytes are controlled with a minimal dosage of Venetoclax of 50 mg.I just had labs yesterday and in 3 weeks my monocytes shot p from 5% to 15% and absolute count from. 08 to over 1000. I am so concerned I am developing
I am under treatment for CLL using Venetoclax. It has been going well and my lymphocytes are controlled with a minimal dosage of Venetoclax of 50 mg.I just had labs yesterday and in 3 weeks my monocytes shot p from 5% to 15% and absolute count from. 08 to over 1000. I am so concerned I am developing
ralphfelo
in
CLL Support
8 months ago
Asthma and work .
The thing is each asthma attack is getting put on my Bradford score and I get pulled in for a attendance review , think on number 6 now cause it keeps triggering a review , because I had a couple of separate incidence of sickness , I also get
chronic
migraine
under a neurologist and osteoarthritis in
The thing is each asthma attack is getting put on my Bradford score and I get pulled in for a attendance review , think on number 6 now cause it keeps triggering a review , because I had a couple of separate incidence of sickness , I also get
chronic
migraine
under a neurologist and osteoarthritis in
Jazz70
in
Asthma Community Forum
4 months ago
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