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Mantle cell lymphoma (MCL)
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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
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
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
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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
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
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
Stem Cell Transplant (stc) after care
Can someone who has been through a sct, or their carer, give me info about the time after hospital discharge please? We live more than 30 minutes from the transplant centre so the hospital is providing us with a flat in Bristol where my husband will be my carer. I know the early days he'll need to
Can someone who has been through a sct, or their carer, give me info about the time after hospital discharge please? We live more than 30 minutes from the transplant centre so the hospital is providing us with a flat in Bristol where my husband will be my carer. I know the early days he'll need to
Scaredy_cat
in
MPN Voice
1 year ago
Good News Train
Hello CLLers Due to my very aggressive ALC doubling every 3 months and massive abdominal lymph nodes, my H/O thought I might have large cell lymphoma on top of my relapsing CLL. I was scheduled for abdominal lymph node biopsy on Sept 7th, but as luck would have, it saw my CLL Specialist on August 24th
Hello CLLers Due to my very aggressive ALC doubling every 3 months and massive abdominal lymph nodes, my H/O thought I might have large cell lymphoma on top of my relapsing CLL. I was scheduled for abdominal lymph node biopsy on Sept 7th, but as luck would have, it saw my CLL Specialist on August 24th
Big_Dee
in
CLL Support
2 years ago
trisomy 12 dx with cll
cll and trisomy 12. Any information will help alleviate fears
cll and trisomy 12. Any information will help alleviate fears
Pokerplayer1
in
CLL Support
2 years ago
2022 American College of Rheumatology Classification Criteria for Giant Cell Arteritis
This came to my attention in the Lancet: ‘Better tools required for biopsy negative giant cell Arteritis’ https://click.notification.elsevier.com/CL0/https:%2F%2Fwww.thelancet.com%2Fjournals%2Flanrhe%2Farticle%2FPIIS2665-9913(22)00252-1%2Ffulltext%3Fdgcid=raven_jbs_aip_email/1/01000184993a7770-46052eb1
This came to my attention in the Lancet: ‘Better tools required for biopsy negative giant cell Arteritis’ https://click.notification.elsevier.com/CL0/https:%2F%2Fwww.thelancet.com%2Fjournals%2Flanrhe%2Farticle%2FPIIS2665-9913(22)00252-1%2Ffulltext%3Fdgcid=raven_jbs_aip_email/1/01000184993a7770-46052eb1
Exflex
in
PMRGCAuk
1 year ago
Tocilizumab
Do other people find the injector pens are painful, intense stinging. Is there anything that can help this. Thank you.
Do other people find the injector pens are painful, intense stinging. Is there anything that can help this. Thank you.
Hidden
in
PMRGCAuk
2 years ago
recent immunotherapy trial results
In reading the recent immunotherapy trial reports it has me worried and it makes me wonder if my husband will go into remission...He is doing very well (with no side affects) in a Dana-Farber study (he is on Acalabrutinib- since March and Obinutuzuimab IV (last dose in August) and Venetoclax). The
In reading the recent immunotherapy trial reports it has me worried and it makes me wonder if my husband will go into remission...He is doing very well (with no side affects) in a Dana-Farber study (he is on Acalabrutinib- since March and Obinutuzuimab IV (last dose in August) and Venetoclax). The
spi3
in
CLL Support
2 years ago
Need Urgent help for CAR-T therapy
Hello! My friend, a 57 year old male, who resides in India, has been suggested CAR-T therapy as a last resort. Here’s his cancer chronology 9/2009 - DX - Grade 2 Follicular Lymphoma. 9/09 to 11/2016 - W&W 11/2016 - NHL - infiltrating liver 11/2016 to 3/17 - 6 rounds of R-CHOP 4-17 to 11
Hello! My friend, a 57 year old male, who resides in India, has been suggested CAR-T therapy as a last resort. Here’s his cancer chronology 9/2009 - DX - Grade 2 Follicular Lymphoma. 9/09 to 11/2016 - W&W 11/2016 - NHL - infiltrating liver 11/2016 to 3/17 - 6 rounds of R-CHOP 4-17 to 11
nuji
in
CLL Support
2 years ago
Tocilizumab
I have GCA and PMR. I am on 40mg Pred. The inflammation markers have normalised, but I still have headaches. Doctors want to reduce Pred because of the side effects I am experiencing. I started Methotrexate injections, but they were paused for the last two weeks to see if they were causing the headaches
I have GCA and PMR. I am on 40mg Pred. The inflammation markers have normalised, but I still have headaches. Doctors want to reduce Pred because of the side effects I am experiencing. I started Methotrexate injections, but they were paused for the last two weeks to see if they were causing the headaches
PQXZT
in
PMRGCAuk
2 years ago
Just been approved for Vitamin B12 injection treatment.
hello everyone this is my first post. I have been experiencing many of the symptoms of functional b12 deficiency/pernicious anemia for close to 7 years. My doctor was reluctant for whatever reason to authorize the injections, even though I had a positive parietal cell antibody test. I guess my question
hello everyone this is my first post. I have been experiencing many of the symptoms of functional b12 deficiency/pernicious anemia for close to 7 years. My doctor was reluctant for whatever reason to authorize the injections, even though I had a positive parietal cell antibody test. I guess my question
MikeyO
in
Pernicious Anaemia Society
2 years ago
Finishing line for Pirtobrutinib (Loxo) & Venetoclax combination trial.
I have just completed the 2 year combination clinical trial with Pirtobrutinib and Venetoclax - I think a small study of us in Australia. ( Also worldwide) This has resulted in no detectable cancer in my blood and lymph nodes- woohoo! My last Bone Marrow test showed just outside the non detectable parameter
I have just completed the 2 year combination clinical trial with Pirtobrutinib and Venetoclax - I think a small study of us in Australia. ( Also worldwide) This has resulted in no detectable cancer in my blood and lymph nodes- woohoo! My last Bone Marrow test showed just outside the non detectable parameter
Billarina
in
CLL Support
2 years ago
Joining the Group
Hi, Folks. I am joining as a newly diagnosed SLL patient, currently under treatment with BTKi and Gazyva. So far, I have read through many posts and have been comforted by your experiences and ways of coping with our ongoing immunity issues. I honestly feel very confident that these new treatments
Hi, Folks. I am joining as a newly diagnosed SLL patient, currently under treatment with BTKi and Gazyva. So far, I have read through many posts and have been comforted by your experiences and ways of coping with our ongoing immunity issues. I honestly feel very confident that these new treatments
tleachhsv
in
CLL America Support
1 year ago
Pred affects glucose...what about thyroid?
i have been struggling to reduce my pred dose. Since I went from 22.5 to 20 every day has been different. The first day was ok. No real change. Then my pain was high....I was shakey, very tired/exhausted,efeated for the rest. Today my pain is a smidge better..but I am so tired. I have that out
i have been struggling to reduce my pred dose. Since I went from 22.5 to 20 every day has been different. The first day was ok. No real change. Then my pain was high....I was shakey, very tired/exhausted,efeated for the rest. Today my pain is a smidge better..but I am so tired. I have that out
Wallysma
in
PMRGCAuk
2 years ago
Are there any targeted drugs that only kill cancerous wbc?
I have very high wbc,and will probably be given calquence which I thought only targeted cancerous cells, however, after talking to my consultant apparently this is not true. I don't understand why it is called a targeted drug if it kills healthy red and white blood cells, leaving you vulnerable
I have very high wbc,and will probably be given calquence which I thought only targeted cancerous cells, however, after talking to my consultant apparently this is not true. I don't understand why it is called a targeted drug if it kills healthy red and white blood cells, leaving you vulnerable
PACWOMAN
in
CLL Support
2 years ago
ATG treatment /Rabbit antigens
Hi as previously explained I am awaiting bone marrow transplant. Have been told I will need rabbit antigens or ATG ahead of the process. From what the consultant has said it can cause lots of side effects eg high temp amongst other things. Has anybody else had this treatment? Thanks Joanne
Hi as previously explained I am awaiting bone marrow transplant. Have been told I will need rabbit antigens or ATG ahead of the process. From what the consultant has said it can cause lots of side effects eg high temp amongst other things. Has anybody else had this treatment? Thanks Joanne
Platelets2022
in
Leukaemia CARE
2 years ago
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