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Experiences with
Cutaneous T cell lymphoma (CTCL)
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I have to withhold my tocilizumab
I was taken into hospital again with cellulitis on my leg put on intravenous antibiotics and am now at home on antibiotic tablets. This means that I have to withhold my tocilizumab. My concern is that if I have a flare what should I do. Increase my pred and by how much? I am now on 8mgms. Tried to reduce
I was taken into hospital again with cellulitis on my leg put on intravenous antibiotics and am now at home on antibiotic tablets. This means that I have to withhold my tocilizumab. My concern is that if I have a flare what should I do. Increase my pred and by how much? I am now on 8mgms. Tried to reduce
Teekay2
in
PMRGCAuk
4 years ago
Remission
So the PETSCAN and the bone marrow biopsy say no leukemia or lymphoma for me. That means total remission but they still want me to have a transplant waiting for an appointment from MD Anderson in Texas.
So the PETSCAN and the bone marrow biopsy say no leukemia or lymphoma for me. That means total remission but they still want me to have a transplant waiting for an appointment from MD Anderson in Texas.
SwiftT
in
CLL Support
4 years ago
Small B cell lymphoma
Hi. My tests still not confirmed but suggestive of small B cell lymphoma. Does anyone know much about this and prognosis treatment ect.
Hi. My tests still not confirmed but suggestive of small B cell lymphoma. Does anyone know much about this and prognosis treatment ect.
Jenny2020
in
CLL Support
4 years ago
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Do I self treat now?
Hello - long post ahead. I posted here last year, prior to seeing a neurologist as I was (and still am having) neuro symptoms: occasional tremor in hands, constant pins and needles in hands and feet, numbness (hands mostly). I have Hashimotos Thyroiditis and psoriasis. I was diagnosed as B12 deficient
Hello - long post ahead. I posted here last year, prior to seeing a neurologist as I was (and still am having) neuro symptoms: occasional tremor in hands, constant pins and needles in hands and feet, numbness (hands mostly). I have Hashimotos Thyroiditis and psoriasis. I was diagnosed as B12 deficient
Hidden
in
Pernicious Anaemia Society
4 years ago
Immunotherapy and Gene Modification of T Cells
I'm diagnosed as of April 2018, and like so many others in the Watch and Wait phase. I hate this approach, but I understand why it is taken. In essence the current treatments available are as dangerous as the disease, so the doctors wait until the enemy is deep in your territory. Sort of waiting until
I'm diagnosed as of April 2018, and like so many others in the Watch and Wait phase. I hate this approach, but I understand why it is taken. In essence the current treatments available are as dangerous as the disease, so the doctors wait until the enemy is deep in your territory. Sort of waiting until
wizzard166
in
CLL Support
4 years ago
NEW TREATMENT: RITUXIMAB AND BENDAMUSTINE
Hello, After Ibrutinib stopped working for my partner, he will now be embarking on a new treatment. Rituximab and Bendamustine chemotherapy combination. Has anybody had any experience using these drugs together? Many thanks,
Hello, After Ibrutinib stopped working for my partner, he will now be embarking on a new treatment. Rituximab and Bendamustine chemotherapy combination. Has anybody had any experience using these drugs together? Many thanks,
pollyg2016
in
Non Hodgkin's Lymphoma Friends
4 years ago
Ppfe
Last week my daughter was confirmed as having ppfe. She had a bone marrow transplant 11 yrs ago as she had acute lymphoblastic leukaemia. Is there anyone out there in the same situation?
Last week my daughter was confirmed as having ppfe. She had a bone marrow transplant 11 yrs ago as she had acute lymphoblastic leukaemia. Is there anyone out there in the same situation?
Kcn3
in
Lung Conditions Community Forum
4 years ago
Sickle Cell Trait and menstrual cycle
For years I suffered from fainting and blackouts right before or during my periods. I recently met another woman who had a similar experience and she mentioned that it was because she has the sickle cell trait. I am wondering if this has happened to anyone else?
For years I suffered from fainting and blackouts right before or during my periods. I recently met another woman who had a similar experience and she mentioned that it was because she has the sickle cell trait. I am wondering if this has happened to anyone else?
MsLady0
in
Sickle Cell Society
4 years ago
Where can I buy Vitamin B complex for intramuscular injections
Hi, just wanting some advise please. I was ill whilst in South Africa last year and was given Vitamin B complex injections as part of my wellness plan. I was given the bottle with the remaining doses to bring back to the UK. I have been getting this injected regularly from a pharmacist thats qualified
Hi, just wanting some advise please. I was ill whilst in South Africa last year and was given Vitamin B complex injections as part of my wellness plan. I was given the bottle with the remaining doses to bring back to the UK. I have been getting this injected regularly from a pharmacist thats qualified
Volta
in
Pernicious Anaemia Society
4 years ago
Urea and Electrolytes
Serum Sodium range 133 - 146 Can I have some help please? In the last 5months my reading has been <133. What can I do to try to get it within the range?
Serum Sodium range 133 - 146 Can I have some help please? In the last 5months my reading has been <133. What can I do to try to get it within the range?
prunus
in
PMRGCAuk
4 years ago
How important is it to have full time care taker when recovering from bone marrow transplant
I have to have bone marrow transplant. Problem is i live in New England. My family is out west(Seattle) , i only have my ex wife and 16 y.o son near me so i don't have anyone to help take care of me. Suggestions,
I have to have bone marrow transplant. Problem is i live in New England. My family is out west(Seattle) , i only have my ex wife and 16 y.o son near me so i don't have anyone to help take care of me. Suggestions,
hossbball
in
CLL Support
4 years ago
Richter Transformation Testimonials. Survivors
Hi. As some of you will know, last week I formed a Facebook group to try to locate all possible Ricther and tell us your case. With your permission, I want to share keeping your story anonymous. For anyone who wants to locate them, just contact the Facebook group. In this group, everyone identifies with
Hi. As some of you will know, last week I formed a Facebook group to try to locate all possible Ricther and tell us your case. With your permission, I want to share keeping your story anonymous. For anyone who wants to locate them, just contact the Facebook group. In this group, everyone identifies with
Priss69
in
CLL Support
4 years ago
Episode 115: Cutting Edge Therapy: Cancer Cured After Years of Battling CLL | Brian Koffman
[i]“After years of battling CLL, Dr. Brian Koffman underwent an experimental immunotherapy (CAR-T) that has now left him without a single trace of malignancy detectable in his entire body. This week's @HiddenForcesPod is the story of that miraculous journey." [/i]https://hiddenforces.io/podcasts/brian-koffman-cll-cutting-edge-cancer-therapy
[i]“After years of battling CLL, Dr. Brian Koffman underwent an experimental immunotherapy (CAR-T) that has now left him without a single trace of malignancy detectable in his entire body. This week's @HiddenForcesPod is the story of that miraculous journey." [/i]https://hiddenforces.io/podcasts/brian-koffman-cll-cutting-edge-cancer-therapy
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
Any Experience with Tocilizumab and GCA?
I am reading that it may reduce the likelihood of relapse and can reduce the long term dosage of Prednisone. Has anyone had experience with it, good or bad?
I am reading that it may reduce the likelihood of relapse and can reduce the long term dosage of Prednisone. Has anyone had experience with it, good or bad?
Brofort
in
PMRGCAuk
4 years ago
Thrombocytosis
Hi everyone here I am glad to be a member of this MPN Voice I really like to hear others too suffering from this blood disease thrombocytosis I have high platelets count.And I would like to hear other patients who has this kind of disorder since this is a rare blood disease.
Hi everyone here I am glad to be a member of this MPN Voice I really like to hear others too suffering from this blood disease thrombocytosis I have high platelets count.And I would like to hear other patients who has this kind of disorder since this is a rare blood disease.
grgracey
in
MPN Voice
4 years ago
Functional doctor checking everything!
I posted here before about my suspected low B12 and my experience with my unsympathetic GP. I visited my consultant who was also not interested in listening to me. In fact he was taking blood while I was telling him I was sure I was low in B12 again and he didn't bother to even check it even though I
I posted here before about my suspected low B12 and my experience with my unsympathetic GP. I visited my consultant who was also not interested in listening to me. In fact he was taking blood while I was telling him I was sure I was low in B12 again and he didn't bother to even check it even though I
MariaMe
in
Pernicious Anaemia Society
4 years ago
CAR-T Cell Therapy
While only one type of immunotherapy, Sipuleucel-T, has yielded only modest improvements in survival most other types such as viruses, PD-1 and PD-L1 inhibitors, etc. have not been very effective, because of PCa's comparatively low mutational loads, I still have hope that immunotherapy will one day be
While only one type of immunotherapy, Sipuleucel-T, has yielded only modest improvements in survival most other types such as viruses, PD-1 and PD-L1 inhibitors, etc. have not been very effective, because of PCa's comparatively low mutational loads, I still have hope that immunotherapy will one day be
PhilipSZacarias
in
Advanced Prostate Cancer
5 years ago
After 4th Xofigo injection, bone marrow 'crashed'? - Cancer or side effect from Xofigo?? Next step??
My husband seemed to be responding to the monthly Xofigo injections until the 4th one on Dec 5th, which caused his blood numbers to crash. He ended up in the ER 2 weeks later, on Dec 20th, with hemoglobin around 6, so they gave him 3 red blood cell transfusions which brought him up to 8.4. (we were
My husband seemed to be responding to the monthly Xofigo injections until the 4th one on Dec 5th, which caused his blood numbers to crash. He ended up in the ER 2 weeks later, on Dec 20th, with hemoglobin around 6, so they gave him 3 red blood cell transfusions which brought him up to 8.4. (we were
JLS1
in
Advanced Prostate Cancer
4 years ago
Follow-up...and perhaps hope for us all
Last month I posted about my son's sudden leukemia diagnosis (see below). Although he was not well enough to make it to MD Anderson as planned in December, he did get there this week. It was anticipated that their recommendation would be either stay the course with the intense chemo that he was in the
Last month I posted about my son's sudden leukemia diagnosis (see below). Although he was not well enough to make it to MD Anderson as planned in December, he did get there this week. It was anticipated that their recommendation would be either stay the course with the intense chemo that he was in the
shueswim
in
Advanced Prostate Cancer
4 years ago
Debulking Eliminates Need for Hospitalization Prior to Initiating Venetoclax Therapy in untreated CLL pts
This is a report of Phase 3 study NCT03406156. Due to the rapid induction of cell death caused by the targeted activity of venetoclax, some patients require inpatient monitoring for tumor lysis syndrome (TLS) at initiation of therapy. In the recent CLL14 study, 64% and 22% of venetoclax-treated patients
This is a report of Phase 3 study NCT03406156. Due to the rapid induction of cell death caused by the targeted activity of venetoclax, some patients require inpatient monitoring for tumor lysis syndrome (TLS) at initiation of therapy. In the recent CLL14 study, 64% and 22% of venetoclax-treated patients
Jm954
Administrator
in
CLL Support
5 years ago
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