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Experiences with
Mantle cell lymphoma (MCL)
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What if venetoclax and/or ibritinib stops working?
Hi all, I am a 33 year old dutch male. I have had CLL since i am 24 and have been dealing with CLL for 9 years. I have mutated genes wich put me into a poor prognossis. I have had FCR when i was arround 26/27. I gave me 2 years of no threatment. Then it came back and i was place in a studie group
Hi all, I am a 33 year old dutch male. I have had CLL since i am 24 and have been dealing with CLL for 9 years. I have mutated genes wich put me into a poor prognossis. I have had FCR when i was arround 26/27. I gave me 2 years of no threatment. Then it came back and i was place in a studie group
JanAmsterdam
in
CLL Support
6 years ago
24 Month results post Randomisation— Phase 2 Flair trial
Hi Everyone, Not posted for a while. But thought a few of you of you taking Imbruvica & Retuximab May find it interesting Neutrophil count 1.8 — 3.0 Lymphocyte Count 89.3 —2.9 Full blood count W 92.1—6.5 Haemoglobin estimation 93.—142. Platelet count 73.—-175. Red blood cell c 2.92—-4.71 Monocytes
Hi Everyone, Not posted for a while. But thought a few of you of you taking Imbruvica & Retuximab May find it interesting Neutrophil count 1.8 — 3.0 Lymphocyte Count 89.3 —2.9 Full blood count W 92.1—6.5 Haemoglobin estimation 93.—142. Platelet count 73.—-175. Red blood cell c 2.92—-4.71 Monocytes
Carpenters52
in
CLL Support
6 years ago
Lumber puncture
So today a neurologist came in at 11:00. Did a lumber puncture right in the room. Now it’s a waiting game. Which I hate. Gave me gababapentin. For headache. I only had 2 doses and I can’t tell if it’s working. Or how long it takes to kick in. I’m hoping to go home tomorrow. But my right leg is bothering
So today a neurologist came in at 11:00. Did a lumber puncture right in the room. Now it’s a waiting game. Which I hate. Gave me gababapentin. For headache. I only had 2 doses and I can’t tell if it’s working. Or how long it takes to kick in. I’m hoping to go home tomorrow. But my right leg is bothering
Hali12
in
PMRGCAuk
6 years ago
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Need Clarification regarding Splenic Marginal Zone Lymphoma
I am from India and I was informed by the doctors that my mother, who is 61 years, has a rare disease called Splenic Marginal Zone Lymphoma. The percentage of Lymphocytes in her blood is 85% and I was told that she is in stage IV of blood cancer. I would like to get the following clarifications: a.
I am from India and I was informed by the doctors that my mother, who is 61 years, has a rare disease called Splenic Marginal Zone Lymphoma. The percentage of Lymphocytes in her blood is 85% and I was told that she is in stage IV of blood cancer. I would like to get the following clarifications: a.
sellakumar
in
CLL Support
6 years ago
So confusing continued
Long talk with GP today and getting a better understanding of his reasoning I have pmr...... amongst other things. I had a large shwanoma removed from my spine as well as a second attempt at a 3 level fusion, which still isn't fused. I get two different pain collections from these. Layer over leukemia
Long talk with GP today and getting a better understanding of his reasoning I have pmr...... amongst other things. I had a large shwanoma removed from my spine as well as a second attempt at a 3 level fusion, which still isn't fused. I get two different pain collections from these. Layer over leukemia
Angiejnz
in
PMRGCAuk
6 years ago
Who the Hell is Ali ibn Isa?
He may be the guy who documented the very first written account of a TAB (Temporal Artery Biopsy) procedure; sometime between 940 to 1010 A.D!!! Go Ali! Another very technical (and to me, the layperson) mind boggling editorial about recent advances in giant cell arteritis and impacts to how the disease
He may be the guy who documented the very first written account of a TAB (Temporal Artery Biopsy) procedure; sometime between 940 to 1010 A.D!!! Go Ali! Another very technical (and to me, the layperson) mind boggling editorial about recent advances in giant cell arteritis and impacts to how the disease
Hidden
in
PMRGCAuk
6 years ago
blood results 1
ferritin is right at the bottom and TSH too high i struggle taking 150 eltroxin so do alternate days 100, 150 i have solgar gentle iron will that do for ferritin and i got some folic acid tablets from tesco as per normal dr says everything is fine also posted blood results 2
ferritin is right at the bottom and TSH too high i struggle taking 150 eltroxin so do alternate days 100, 150 i have solgar gentle iron will that do for ferritin and i got some folic acid tablets from tesco as per normal dr says everything is fine also posted blood results 2
mandy72
in
Thyroid UK
6 years ago
Oncotype DX rest Details Colon Cancer
Hi, I have been diagnosed with colon tumor and the same has been removed through surgery 3 weeks ago. Pathology report says T3, M0 , N0. I understand with doctor discussion that fortunately it’s not spread to any lymph nodes. But still doctor advised me to go for chemo. I’m lot worried about side effects
Hi, I have been diagnosed with colon tumor and the same has been removed through surgery 3 weeks ago. Pathology report says T3, M0 , N0. I understand with doctor discussion that fortunately it’s not spread to any lymph nodes. But still doctor advised me to go for chemo. I’m lot worried about side effects
Hidden
in
Breast Cancer India
6 years ago
Good news- got approved for zarxio shots for entire year! Buh bye neutropenia!
Hooray finally something positive :) in addition my oncologist dr Fang just called said there is no transformed lymphoma still just SLL and waiting on the FISH results still .I also was able to make an appt w lymphoma specialist May 14 at Rutgers Cancer Instutute - Dr. Strair . I had a very productive
Hooray finally something positive :) in addition my oncologist dr Fang just called said there is no transformed lymphoma still just SLL and waiting on the FISH results still .I also was able to make an appt w lymphoma specialist May 14 at Rutgers Cancer Instutute - Dr. Strair . I had a very productive
Luckyliss
in
CLL Support
6 years ago
Male hypo's support and advice
Hello everyone. I'm 41 male in the United States. I had aplastic anemia and a follow-up bone marrow transplant in 1998. The complications are GVH of the gut, low thyroid, and skin vitiligo. 200 mcg levo. Blood tests in April are the following Vit D 25, D3 19mg/dl Vit D D2 6mg D 25mg Folate 7.8 ng/ml
Hello everyone. I'm 41 male in the United States. I had aplastic anemia and a follow-up bone marrow transplant in 1998. The complications are GVH of the gut, low thyroid, and skin vitiligo. 200 mcg levo. Blood tests in April are the following Vit D 25, D3 19mg/dl Vit D D2 6mg D 25mg Folate 7.8 ng/ml
Jeffreyt
in
Thyroid UK
6 years ago
Am I in crisis?
I have been suffering from occasional foot swelling and severe pain, for about 4-5yrs. It has recently become more frequent and more painful. Body is sore and always tired. However... I was told by doctor as a teen I have the sickle trait. My mother says I have sickle cell. Can trait become actual sickle
I have been suffering from occasional foot swelling and severe pain, for about 4-5yrs. It has recently become more frequent and more painful. Body is sore and always tired. However... I was told by doctor as a teen I have the sickle trait. My mother says I have sickle cell. Can trait become actual sickle
SarahXo
in
Sickle Cell Society
6 years ago
Vitamin D may help immunotherapy drugs work better
Interesting interview with Dr. James Fleet on AICR website : https://tinyurl.com/y7u293vh
Interesting interview with Dr. James Fleet on AICR website : https://tinyurl.com/y7u293vh
Shar0n
Volunteer
in
Non Hodgkin's Lymphoma Friends
6 years ago
Help Interpreting Iron and Vit. D Results Please
Hello I had my vitamin D and a full iron panel taken in November 2017. They were a private draw. The results were: Vitamin D - 25-Hydroxyvitamin D Total = 113. Ref. range 100-200 Iron Panel Iron - 13.6 umol/L (6.6 - 26.0) TIBC - 67 umol/L (41 -77) Transferrin Saturation Percentage - 20 (20-55) Ferritin
Hello I had my vitamin D and a full iron panel taken in November 2017. They were a private draw. The results were: Vitamin D - 25-Hydroxyvitamin D Total = 113. Ref. range 100-200 Iron Panel Iron - 13.6 umol/L (6.6 - 26.0) TIBC - 67 umol/L (41 -77) Transferrin Saturation Percentage - 20 (20-55) Ferritin
FancyPants54
in
Thyroid UK
6 years ago
Thoughts on CLL treatment and watch and wait
I’d be really interested in other people’s thought processes about this. I’m not a haematologist, and this is all in the realm of theory and so may not stand up to clinical trials or the real world. I guess in a way I’m trying to synthesize a philosophy of treatment. 1. Why do we watch and wait? As
I’d be really interested in other people’s thought processes about this. I’m not a haematologist, and this is all in the realm of theory and so may not stand up to clinical trials or the real world. I guess in a way I’m trying to synthesize a philosophy of treatment. 1. Why do we watch and wait? As
AdrianUK
in
CLL Support
6 years ago
Greetings from Melbourne
Hi all, Just reaching out to the CLL community. This is a great site and need help I am a fairly fit 47 year old and 18 months ago I was diagnosed with Synovial Sarcoma in the palm of my left hand. I lost my index finger and had radiotherapy at the Alfred hospital in Melbourne, Australia. I have just
Hi all, Just reaching out to the CLL community. This is a great site and need help I am a fairly fit 47 year old and 18 months ago I was diagnosed with Synovial Sarcoma in the palm of my left hand. I lost my index finger and had radiotherapy at the Alfred hospital in Melbourne, Australia. I have just
Trav_Aus_1970
in
CLL Support
6 years ago
Here it is. Times piece today on CLL and access to drugs. Skip dumb comments....
The Times chief reporter, Sean O’Neill, is writing about his leukaemia for the first time to highlight the unfair NHS policy on who can be offered life-saving drugs We had spent a glorious August day high in the Picos mountains in northern Spain, whizzing by cable car to the 1,800m peak of Fuenta De
The Times chief reporter, Sean O’Neill, is writing about his leukaemia for the first time to highlight the unfair NHS policy on who can be offered life-saving drugs We had spent a glorious August day high in the Picos mountains in northern Spain, whizzing by cable car to the 1,800m peak of Fuenta De
romarin
in
CLL Support
6 years ago
Hodgkins Lymphoma versus Non-Hodgkins Lymphoma
There are important differences between the two diagnoses explained here: https://tinyurl.com/yd2yrvn2
There are important differences between the two diagnoses explained here: https://tinyurl.com/yd2yrvn2
Shar0n
Volunteer
in
Non Hodgkin's Lymphoma Friends
6 years ago
Stem cell transplant outcomes
Hi Y'All, I have post-PV Myelofibrosis and am getting to the stage where I can see transfusions looming and therefore my best chance for stem cell transplant (SCT) will soon be gone. I have so far resisted SCT because the outcomes are so unpredictable (especially if u don't have a related donor, which
Hi Y'All, I have post-PV Myelofibrosis and am getting to the stage where I can see transfusions looming and therefore my best chance for stem cell transplant (SCT) will soon be gone. I have so far resisted SCT because the outcomes are so unpredictable (especially if u don't have a related donor, which
jane13
in
MPN Voice
6 years ago
High GGT post treatment for Acute Myeloid Leukaemia
Hi I have a GGT reading of 900. It has been rising steadily since a successful stem cell transplant in August. I drink very little and am only a bit overweight. My disease is in remission but am still not feeling well. Many of my symptoms - nausea, fatigue and loss of appetite could be caused by liver
Hi I have a GGT reading of 900. It has been rising steadily since a successful stem cell transplant in August. I drink very little and am only a bit overweight. My disease is in remission but am still not feeling well. Many of my symptoms - nausea, fatigue and loss of appetite could be caused by liver
Hidden
in
British Liver Trust
6 years ago
Any bowel problems with GPA?
Hi, for several months now I've had a change in bowel habit. Colonoscopy clear thank goodness. But the problem continues and have had a couple of episodes of near incontince of faeces. And deep rectal pain. Just wondered if any one else has had similar symptoms.
Hi, for several months now I've had a change in bowel habit. Colonoscopy clear thank goodness. But the problem continues and have had a couple of episodes of near incontince of faeces. And deep rectal pain. Just wondered if any one else has had similar symptoms.
ludo
in
Vasculitis UK
6 years ago
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