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Experiences with
Mantle cell lymphoma (MCL)
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A giant cell arteritis suffer
A giant cell arteritis suffer on methotrexate and prednisolone. Has anyone been on this combination as well? How long did it take you to get off the steroids as i'm still on 4mg as struggling to get off them as symptoms keep returning once I reduce down any further.
A giant cell arteritis suffer on methotrexate and prednisolone. Has anyone been on this combination as well? How long did it take you to get off the steroids as i'm still on 4mg as struggling to get off them as symptoms keep returning once I reduce down any further.
BM16
in
PMRGCAuk
1 year ago
Levo doses and side effects
Hi everyone, I've had hypothyroidism (Hashimotos) for several years now and never felt 'well' that whole time, but at times have been able to cope and others (like now) absolutely can't. It seems to be constant and I wanted some advice/thoughts from what seems to be a very knowledgeable group who can
Hi everyone, I've had hypothyroidism (Hashimotos) for several years now and never felt 'well' that whole time, but at times have been able to cope and others (like now) absolutely can't. It seems to be constant and I wanted some advice/thoughts from what seems to be a very knowledgeable group who can
Stevensnj87
in
Thyroid UK
1 year ago
Allogenic Stem Cell Transplant
I [i]received a Stem cell transplant six months ago. My decision was based on the availability of a suitable donor and being able to get to remission through aggressive chemotherapy. Other treatments had no effect on my rapidly growing leukemia. As of today I’m still in remission, showing 97% chimerism
I [i]received a Stem cell transplant six months ago. My decision was based on the availability of a suitable donor and being able to get to remission through aggressive chemotherapy. Other treatments had no effect on my rapidly growing leukemia. As of today I’m still in remission, showing 97% chimerism
GarciaB
in
MPN Voice
1 year ago
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Bone marrow transplant
Hi, I am being offered a bone marrow transplant and wonder if anyone can offer me positive advice. Obviously the process is quite scary, but would like to think I'm doing the right thing. Thank you George
Hi, I am being offered a bone marrow transplant and wonder if anyone can offer me positive advice. Obviously the process is quite scary, but would like to think I'm doing the right thing. Thank you George
Georgehb
in
MPN Voice
1 year ago
Navigating the Hidden Costs of Clinical Trials on Patient Power
Navigating the Hidden Costs of Clinical Trials https://www.patientpower.info/navigating-the-hidden-costs-of-clinical-trials Nearly two years ago, Brad Adams’ doctor presented him with a few options to treat his chronic lymphocytic leukemia after it returned. Adams could continue taking an oral treatment
Navigating the Hidden Costs of Clinical Trials https://www.patientpower.info/navigating-the-hidden-costs-of-clinical-trials Nearly two years ago, Brad Adams’ doctor presented him with a few options to treat his chronic lymphocytic leukemia after it returned. Adams could continue taking an oral treatment
lankisterguy
Volunteer
in
CLL Support
2 years ago
Half (3 areas) of my cancer cells are gone!!!!
Hello! I want to share some good news. I am on Watch and Wait. I only do non traditional practices like eating cactus, ginger, tumeric, green drinks (celery, kale, cucumbers, cactus, sometimes with fruits , etc. If you read my post, I have tried CBD, Inositol, I PRAY A Lot. I was diagnosed in 2017
Hello! I want to share some good news. I am on Watch and Wait. I only do non traditional practices like eating cactus, ginger, tumeric, green drinks (celery, kale, cucumbers, cactus, sometimes with fruits , etc. If you read my post, I have tried CBD, Inositol, I PRAY A Lot. I was diagnosed in 2017
BLP1211
in
Non Hodgkin's Lymphoma Friends
2 years ago
Who else has Myelodysplastic Syndromes (MDS) in addition to their PCa?
Dx a month ago as having trilineage MDS with Ring Sideroblasts(MDS-RS), somewhere between low and intermediate. Described as bone marrow cancers and a bone marrow biopsy is required for dx. It morphs into Acute Myloid Leukemia in 30-40% of the cases. Know that my shit is weak and am searching for
Dx a month ago as having trilineage MDS with Ring Sideroblasts(MDS-RS), somewhere between low and intermediate. Described as bone marrow cancers and a bone marrow biopsy is required for dx. It morphs into Acute Myloid Leukemia in 30-40% of the cases. Know that my shit is weak and am searching for
SpencerBoy11
in
Advanced Prostate Cancer
1 year ago
Bone Marrow Transplant
A wonderful uplifting post to read first thing in the morning. You've made my day!
A wonderful uplifting post to read first thing in the morning. You've made my day!
Sivasi
in
MPN Voice
1 year ago
BONE MARROW TRANSPLANT
Good evening to you , I hope you are all well. I would like to share my special news with you all , today I completed day 2 of my conditioning ahead of my BMT on Thursday 2nd February 2023. I am both privileged and excited about my journey and have no fear or doubts. Special thanks to all of you,
Good evening to you , I hope you are all well. I would like to share my special news with you all , today I completed day 2 of my conditioning ahead of my BMT on Thursday 2nd February 2023. I am both privileged and excited about my journey and have no fear or doubts. Special thanks to all of you,
kevinbros
in
MPN Voice
1 year ago
Had a blood test at GP's, not for CLL
I was called to my GP's for a blood test related to my new heart medication. I also had an Echocardigram and a 24 hour monitoring tape. Surprise, surprise no one seems to know where they have sent the results. I have telephoned every department I can think of but no one admits to knowing anything!!
I was called to my GP's for a blood test related to my new heart medication. I also had an Echocardigram and a 24 hour monitoring tape. Surprise, surprise no one seems to know where they have sent the results. I have telephoned every department I can think of but no one admits to knowing anything!!
kitchengardener2
in
CLL Support
2 years ago
Does Covid boost ALS?
I'm W&W for 2 years. Abs lymphs (ALS) were 82K in July. Got 1st Evusheld 8/23. Got Covid 8/31 and started Paxlovid same day. 5 days later, 9/5, felt great then went on a vigorous 31 miles bike ride (probably too soon for such exercise). Then rebound on 9/12 with positive home test. Never got fever but
I'm W&W for 2 years. Abs lymphs (ALS) were 82K in July. Got 1st Evusheld 8/23. Got Covid 8/31 and started Paxlovid same day. 5 days later, 9/5, felt great then went on a vigorous 31 miles bike ride (probably too soon for such exercise). Then rebound on 9/12 with positive home test. Never got fever but
JDG45
in
CLL Support
2 years ago
CLL Society interview - Dr. Shahzad Mustafa on What it Means to be Immunocompromised for Patients with CLL/SLL January 13, 2023
Dr. Shahzad Mustafa on What it Means to be Immunocompromised for Patients with CLL/SLL January 13, 2023 https://cllsociety.org/2023/01/dr-shahzad-mustafa-on-what-it-means-to-be-immunocompromised-for-patients-with-cll-sll/ https://youtu.be/DSOKTmffc-s - In this interview, Dr. Brian Koffman spoke
Dr. Shahzad Mustafa on What it Means to be Immunocompromised for Patients with CLL/SLL January 13, 2023 https://cllsociety.org/2023/01/dr-shahzad-mustafa-on-what-it-means-to-be-immunocompromised-for-patients-with-cll-sll/ https://youtu.be/DSOKTmffc-s - In this interview, Dr. Brian Koffman spoke
lankisterguy
Volunteer
in
CLL Support
1 year ago
Has anyone got any experience in coming off Tocilizumab to start on Methotrexate?
I have been on Tocilizumab since August 2021 but the funding for this is being withdrawn. I have been off steroids now for over 2 months so without the Toci I have nothing to ward off any flare-up of GCA. Due to being relatively asymptomatic before diagnosis and losing sight in one eye very quickly rheumatology
I have been on Tocilizumab since August 2021 but the funding for this is being withdrawn. I have been off steroids now for over 2 months so without the Toci I have nothing to ward off any flare-up of GCA. Due to being relatively asymptomatic before diagnosis and losing sight in one eye very quickly rheumatology
sequeluk
in
PMRGCAuk
1 year ago
Help understanding coeliac test results
Recent results of testing for coeliac. Doctor says 'no further action'. Tissue transglutaminase IgA level 0.3 U/mL [0.0 - 10.9] Immunoglobulin A level 2.06 g/L [0.8 - 4.0]
Should I be concerned that the first result is very low in the range?
My ferritin and iron were tested at
Recent results of testing for coeliac. Doctor says 'no further action'. Tissue transglutaminase IgA level 0.3 U/mL [0.0 - 10.9] Immunoglobulin A level 2.06 g/L [0.8 - 4.0]
Should I be concerned that the first result is very low in the range?
My ferritin and iron were tested at
Feelingrubbish
in
Thyroid UK
1 year ago
GP refusing to offer IFAB Test
I recently requested and Intrinsic Factor Antibody test with my GP and was told there's no need to do this test if my Parietal Cell antibody test was negative/normal. The Parietal Cell test was done in Jan 2021 and I assumed the IFAB was done at the same time and also came back normal. (I was unaware
I recently requested and Intrinsic Factor Antibody test with my GP and was told there's no need to do this test if my Parietal Cell antibody test was negative/normal. The Parietal Cell test was done in Jan 2021 and I assumed the IFAB was done at the same time and also came back normal. (I was unaware
cloudspotting
in
Pernicious Anaemia Society
1 year ago
Preparations afoot for my stem cell transplant
I've finally got dates for my sct. I have a CT scan next week in preparation for radiotherapy to shrink my spleen . That will be followed by 6 days of radiotherapy as an out patient then 24 Jan I get admitted and start chemo. Donor cells getting infused a few days later. I knew all along this was going
I've finally got dates for my sct. I have a CT scan next week in preparation for radiotherapy to shrink my spleen . That will be followed by 6 days of radiotherapy as an out patient then 24 Jan I get admitted and start chemo. Donor cells getting infused a few days later. I knew all along this was going
Scaredy_cat
in
MPN Voice
1 year ago
Husband's Ventoclax Ramp Up Goes Smoothly!
Here in California, the temperature reached 120 degrees on the first day of my husband's Ventoclax Ramp Up. Our power went out, and without AC, it was definitely a day to remember! On the positive side, he followed his specialist's instructions, labs followed by ventoclax medication, followed by more
Here in California, the temperature reached 120 degrees on the first day of my husband's Ventoclax Ramp Up. Our power went out, and without AC, it was definitely a day to remember! On the positive side, he followed his specialist's instructions, labs followed by ventoclax medication, followed by more
lisakc1
in
CLL Support
2 years ago
Update on progress with MF and the FEDORA clinical trial
So to recap, I was diagnosed with primary MF in October 2022 and asked to join a new clinical trial called FEDORA. After many tests including a BMB, ultrasound on my abdomen, chest X-ray etc. I started on the pre medication of 400mg/day (in one dose) of Fedratinib in capsule form. This was the first
So to recap, I was diagnosed with primary MF in October 2022 and asked to join a new clinical trial called FEDORA. After many tests including a BMB, ultrasound on my abdomen, chest X-ray etc. I started on the pre medication of 400mg/day (in one dose) of Fedratinib in capsule form. This was the first
Flyingsteamer
in
MPN Voice
1 year ago
Novel COVID-19 Vaccine Shows Promise for People with Leukemia and Lymphoma
Of these, four participants had a congenital B cell deficiency and the remainder had hematologic malignancies, most commonly chronic lymphocytic leukemia (n=12),
mantle
cell
lymphoma
(n=10), and follicular lymphoma (n=7).
Of these, four participants had a congenital B cell deficiency and the remainder had hematologic malignancies, most commonly chronic lymphocytic leukemia (n=12),
mantle
cell
lymphoma
(n=10), and follicular lymphoma (n=7).
bennevisplace
in
CLL Support
2 years ago
Son in Canada looks to Germany for treatment
Our 56 year old son started with colon cancer, which progressed to lung cancer and now a tumor has been discovered by his sciatica nerve. He has been continually been sent for more radiation treatments that don't seem to be working. He has heard of a doctor in Germany who uses different techniques
Our 56 year old son started with colon cancer, which progressed to lung cancer and now a tumor has been discovered by his sciatica nerve. He has been continually been sent for more radiation treatments that don't seem to be working. He has heard of a doctor in Germany who uses different techniques
CCgroup
in
CLL Support
2 years ago
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