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Cutaneous T cell lymphoma (CTCL)
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Recently started Acalabrutinib
Hi everyone, My father has recently started Acalabrutinib 5 days ago. He was diagnosed with CLL in 2007 and has received FCR (twice) and Benda-Ritux once. His CLL only went into partial remission on benda-ritux and has come back after one year since his last cycle of BR. I am worried regarding the
Hi everyone, My father has recently started Acalabrutinib 5 days ago. He was diagnosed with CLL in 2007 and has received FCR (twice) and Benda-Ritux once. His CLL only went into partial remission on benda-ritux and has come back after one year since his last cycle of BR. I am worried regarding the
Healthgiddy
in
CLL Support
6 months ago
Rise in WBC
Hello to all, My husband has CLL, he has also been treated for metastatic melanoma which from his latest CT scan is NED. He will receive his last immunotherapy infusion next week. We are beyond grateful. However his blood work taken yesterday showed and increase in his WBC from 14.5 last month to the
Hello to all, My husband has CLL, he has also been treated for metastatic melanoma which from his latest CT scan is NED. He will receive his last immunotherapy infusion next week. We are beyond grateful. However his blood work taken yesterday showed and increase in his WBC from 14.5 last month to the
313313
in
CLL Support
6 months ago
here we are again
my husbands blood work did not come back good after being great for over 5 years on Imbruvica. Oncologist ordered a Pet Scan since he has never had one. Just CT scans. And more comprehensive blood work. To say I’m a mess is an understatement. We thought imbruvica was the answer to our prayers for it
my husbands blood work did not come back good after being great for over 5 years on Imbruvica. Oncologist ordered a Pet Scan since he has never had one. Just CT scans. And more comprehensive blood work. To say I’m a mess is an understatement. We thought imbruvica was the answer to our prayers for it
CLLWife
in
CLL Support
6 months ago
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Sclerosing Mesenteritis
hi folks this is my first time posting here, I have lupus SLE and recently been diagnosed with sclerosing Mesenteritis which is extremely rare - I have ended up in hospital 3 times In last 3 months - I have excruciating pain in my tummy with it, at first they thought it was my lupus but it’s not - I
hi folks this is my first time posting here, I have lupus SLE and recently been diagnosed with sclerosing Mesenteritis which is extremely rare - I have ended up in hospital 3 times In last 3 months - I have excruciating pain in my tummy with it, at first they thought it was my lupus but it’s not - I
svfarmer
in
Scleroderma & Raynaud's UK (SRUK)
6 months ago
'Wednesday Word"
Since my question yesterday was concerning 'brain fog', I thought my word for today should be [u][i]
encephalopathy
[/i][/u] - here are specifics about the word This is a blanket term referring to any brain dysfunction. It can commonly be called 'brain fog'. However, [u][i]
encephalopathy
Since my question yesterday was concerning 'brain fog', I thought my word for today should be [u][i]
encephalopathy
[/i][/u] - here are specifics about the word This is a blanket term referring to any brain dysfunction. It can commonly be called 'brain fog'. However, [u][i]
encephalopathy
DonnaBoll
Administrator
in
PBC Foundation
6 months ago
Activating lipid nanoparticles can streamline the production of CAR T-cells for cancer immunotherapy
A bio- engineering breakthrough is reported here https://phys.org/news/2024-03-method-car-cells-lipid-nanoparticles.html and the article includes a link to the open access research paper. Sorry, that's all folks. This is a phone and I'm on holiday. Italy shouldn't be this wet. Ciao.
A bio- engineering breakthrough is reported here https://phys.org/news/2024-03-method-car-cells-lipid-nanoparticles.html and the article includes a link to the open access research paper. Sorry, that's all folks. This is a phone and I'm on holiday. Italy shouldn't be this wet. Ciao.
bennevisplace
in
CLL Support
6 months ago
Palacelover
Hello HealthUnlocked family:Is anyone out there aware of the medication named Brukinsa, which contains the ingredient zanubrutinib; apparently it is a medication that can control the btk protein that is generated by the kind of Lymphoma that I have, which is WM. If anyone can give me any insights, such
Hello HealthUnlocked family:Is anyone out there aware of the medication named Brukinsa, which contains the ingredient zanubrutinib; apparently it is a medication that can control the btk protein that is generated by the kind of Lymphoma that I have, which is WM. If anyone can give me any insights, such
Palacelover
in
Non Hodgkin's Lymphoma Friends
6 months ago
Richter’s Anxiety
Good morning. I have a friend in his 50s with aggressive unmutated IGHV. I am in my early 50s and am Trisomy 12 unmutated and recently diagnosed. Both of us have been told that we are at increased risk for Richter’s. Figuring out what this means is tough. There are top researchers who say that 5 to
Good morning. I have a friend in his 50s with aggressive unmutated IGHV. I am in my early 50s and am Trisomy 12 unmutated and recently diagnosed. Both of us have been told that we are at increased risk for Richter’s. Figuring out what this means is tough. There are top researchers who say that 5 to
Hidden
in
CLL Support
6 months ago
first line treatment with bendamustin and rithoximab
I had 6 month first line treatment with bendamustin and rithoximab in 2022 september ended. .when i start my treatment my numbers was very high wbc 146 rbc was low in 2022 janeuary the numbers was wbc126 rbc 3.23 hgb 10.9 plt 135 LDh 920. because of high in ldh one of recent doctor said may be
I had 6 month first line treatment with bendamustin and rithoximab in 2022 september ended. .when i start my treatment my numbers was very high wbc 146 rbc was low in 2022 janeuary the numbers was wbc126 rbc 3.23 hgb 10.9 plt 135 LDh 920. because of high in ldh one of recent doctor said may be
09123836306
in
CLL Support
6 months ago
Palacelover
Diagnosed in July 2022 after a PET Scan and a bone marrow biopsy. Placed on a watch and wait regime. Have been experiencing many colds and chest infections over the last three months. I am now waiting on a decision from the consultant regarding a treatment regime.
Diagnosed in July 2022 after a PET Scan and a bone marrow biopsy. Placed on a watch and wait regime. Have been experiencing many colds and chest infections over the last three months. I am now waiting on a decision from the consultant regarding a treatment regime.
Palacelover
in
Non Hodgkin's Lymphoma Friends
7 months ago
One result from bone marrow aspiration:
Update: After 9 months on MSK trial 20-044, I am uMRD in blood, CT Scans show all nodes are shrunk and my Dr. is "very very please." The first report from yesterday's BMB is below. "Few B cells seen," is this something to be concerned about? The report was just posted and my Dr. is on vacation next week
Update: After 9 months on MSK trial 20-044, I am uMRD in blood, CT Scans show all nodes are shrunk and my Dr. is "very very please." The first report from yesterday's BMB is below. "Few B cells seen," is this something to be concerned about? The report was just posted and my Dr. is on vacation next week
SurfSurf
in
CLL Support
7 months ago
insurance issue
hi guys, My mother was diagnosed with her2+ve braa we ya cancer stage 4. doctor recommended the below medications : Paclitaxel + cyclophosphamide + phesgo+ zolodronic acid . I have corporate insurance in new India insurance with mediassist. These people are not approving phesgo which is targeted
hi guys, My mother was diagnosed with her2+ve braa we ya cancer stage 4. doctor recommended the below medications : Paclitaxel + cyclophosphamide + phesgo+ zolodronic acid . I have corporate insurance in new India insurance with mediassist. These people are not approving phesgo which is targeted
Srikalakm
in
Breast Cancer India
7 months ago
Beaconthecat
Diagnosed last April thru a lymph node biopsy....results SLL...currently on W&W...a few more nodes have emerged but feel good, no symptoms, exercise hard and just living life...
Diagnosed last April thru a lymph node biopsy....results SLL...currently on W&W...a few more nodes have emerged but feel good, no symptoms, exercise hard and just living life...
Beaconthecat
in
CLL Support
7 months ago
The 2024 Global Patient Survey invites CLL patients and caregivers to share their experiences
Every two years, the Lymphoma Coalition, a worldwide network of patient groups with a full or partial focus on providing support to lymphoma patients, including those with CLL, undertakes a
Global Patient Survey
. The 2024 survey gives you
an opportunity to share your experience with CLL
Every two years, the Lymphoma Coalition, a worldwide network of patient groups with a full or partial focus on providing support to lymphoma patients, including those with CLL, undertakes a
Global Patient Survey
. The 2024 survey gives you
an opportunity to share your experience with CLL
CLLerinOz
Administrator
in
CLL Support
7 months ago
PNH - blood test
I just received this PNH test result and was wondering if anyone knows what it was testing for. I don't see my doctor until next week and I am curious. Thanks, Jack INTERPRETATION Flow Cytometry analysis did not detect RBC and WBC with PNH-associated phenotype. RBC, Granulocytes and Monocytes show
I just received this PNH test result and was wondering if anyone knows what it was testing for. I don't see my doctor until next week and I am curious. Thanks, Jack INTERPRETATION Flow Cytometry analysis did not detect RBC and WBC with PNH-associated phenotype. RBC, Granulocytes and Monocytes show
rcusher
in
CLL Support
7 months ago
Request for experiences with Vitamin D
If anyone of you would be willing to share your personal experience with Vitamin D that would be appreciated. All good with what is thought to be true in the medicial field I am well versed in that angle. I have taken D3 with K2 and the results were not definitive so I discontinued. I have lived
If anyone of you would be willing to share your personal experience with Vitamin D that would be appreciated. All good with what is thought to be true in the medicial field I am well versed in that angle. I have taken D3 with K2 and the results were not definitive so I discontinued. I have lived
WIZARD6787
in
Pernicious Anaemia Society
2 months ago
I’m still here :)
it’s been a while and my last post was not very positive . This is a quick update . I’m still unclear as to how I got here with my illness but I received palliative chemotherapy six cylcles one every three weeks. I think it was a variation of chop plus an immunotherapy drug beginning with B . The treatment
it’s been a while and my last post was not very positive . This is a quick update . I’m still unclear as to how I got here with my illness but I received palliative chemotherapy six cylcles one every three weeks. I think it was a variation of chop plus an immunotherapy drug beginning with B . The treatment
Hilo13
in
CLL Support
19 days ago
Looking for some assistance
Hello, I've recently become very intolerant to gluten which has been a bit of a shock. I read online that it can be triggered by anxiety and it happened at the time of a serious family crisis. Can anyone tell me if this has happened to them and if so, if it's likely to recede or am I am stuck with it
Hello, I've recently become very intolerant to gluten which has been a bit of a shock. I read online that it can be triggered by anxiety and it happened at the time of a serious family crisis. Can anyone tell me if this has happened to them and if so, if it's likely to recede or am I am stuck with it
alliso
in
Gluten Free Guerrillas
8 months ago
Continued Journey
I’ve had the Bone Marrow Transplant!!! That was actually the easiest part. 5 hours of fluids leading up to the BMT and the previous 5 days of chemo infusions (day5 was the worst) were much harder. Chemo: Fladarabine -6 thru-2 with addition of Melphalan on day-2. When you start treatment (chemo) for
I’ve had the Bone Marrow Transplant!!! That was actually the easiest part. 5 hours of fluids leading up to the BMT and the previous 5 days of chemo infusions (day5 was the worst) were much harder. Chemo: Fladarabine -6 thru-2 with addition of Melphalan on day-2. When you start treatment (chemo) for
FiArt12X
in
CLL Support
3 months ago
Update 8 years, since I started the captivate trial, and doing well so far! UMRD. I plus V. Now just on Ibruvica for many years.
Hello, I am pleased to post that it has been 8 years since I started the captivate trial, and it has gone very well so far. This is even more remarkable since I was/ am 17 P deleted with large lymph nodes a complex karyotype to start. Trisomy 12 as well to start. I have to thank CLL Society
Hello, I am pleased to post that it has been 8 years since I started the captivate trial, and it has gone very well so far. This is even more remarkable since I was/ am 17 P deleted with large lymph nodes a complex karyotype to start. Trisomy 12 as well to start. I have to thank CLL Society
Hoffy
in
CLL Support
9 months ago
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