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Mantle cell lymphoma (MCL)
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Request - Real time experience Reco for the best haematologists in Portugal please
Hello all, Will move to Portugal in the near future. Looking for excellent haematologist recommendations in Portugal. I am hoping to get reco from people who have personally had positive experience with the said haematologists. Also the names of hospitals or institutes focusing on Hematology
Hello all, Will move to Portugal in the near future. Looking for excellent haematologist recommendations in Portugal. I am hoping to get reco from people who have personally had positive experience with the said haematologists. Also the names of hospitals or institutes focusing on Hematology
Iwillwin123
in
PMRGCAuk
2 years ago
Non driving gene mutation-ASXL1
I have MF with JAK2 V617F for 10 years, now is taking Ruxotinib and Interferon . Spleen contraction and blood control are good. Although I took a lot of hormones, at least my fibrosis degree has been reversed, and the mutation rate has also decreased a lot. But I was found I have a new bad prognosis
I have MF with JAK2 V617F for 10 years, now is taking Ruxotinib and Interferon . Spleen contraction and blood control are good. Although I took a lot of hormones, at least my fibrosis degree has been reversed, and the mutation rate has also decreased a lot. But I was found I have a new bad prognosis
merlisa
in
MPN Voice
2 years ago
Non driving gene mutation-ASXL1
I have MF with JAK2 V617F for 10 years, now is taking Ruxotinib and Interferon . Spleen contraction and blood control are good. Although I took a lot of hormones, at least my fibrosis degree has been reversed, and the mutation rate has also decreased a lot. But I was found I have a new bad prognosis
I have MF with JAK2 V617F for 10 years, now is taking Ruxotinib and Interferon . Spleen contraction and blood control are good. Although I took a lot of hormones, at least my fibrosis degree has been reversed, and the mutation rate has also decreased a lot. But I was found I have a new bad prognosis
merlisa
in
Fight MPN
2 years ago
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Comparison can be good for the soul...
I do not often write on here but it seemed these musing may be of interest to others so here goes... ONE of the great advantages I find from attending the courses run by the Pulmonary Rehabilitation Service (PRS) is comparison. And after today's session I feel encouraged. Not that I am significantly
I do not often write on here but it seemed these musing may be of interest to others so here goes... ONE of the great advantages I find from attending the courses run by the Pulmonary Rehabilitation Service (PRS) is comparison. And after today's session I feel encouraged. Not that I am significantly
Timberman
in
COPD Friends
2 years ago
CCL - Debilitating exhaustion
I was diagnosed with Non Hodgkin Lymphoma in April 2016. I have been taking Inbruvica for the past 3 years which has been successful. Today I find it hard most days to get out of bed. I am exhausted all of the time. I have been on a downward spiral for several months. Dr has me off of the drug for
I was diagnosed with Non Hodgkin Lymphoma in April 2016. I have been taking Inbruvica for the past 3 years which has been successful. Today I find it hard most days to get out of bed. I am exhausted all of the time. I have been on a downward spiral for several months. Dr has me off of the drug for
PAgrandmom
in
CLL Support
2 years ago
will these hot flashes ever end ?
Hi all I am grateful that after 19 months since i developed pmr symptoms I am feeling a lot better and have gradually reduced over the months from 30 mg (think gp went a bit over the top with that dose because i was on 25 and when i reported some blurred vision and headache she upped it . I saw optician
Hi all I am grateful that after 19 months since i developed pmr symptoms I am feeling a lot better and have gradually reduced over the months from 30 mg (think gp went a bit over the top with that dose because i was on 25 and when i reported some blurred vision and headache she upped it . I saw optician
Mofred
in
PMRGCAuk
2 years ago
Creatinine elevated on CLL
I have CLL already 10 years, taken Imbruvica 5 years. Have constant UTI - 5 time as a year. Now my creatinine level start to increase. Did anyone have this situation? Any suggestions? Thank you
I have CLL already 10 years, taken Imbruvica 5 years. Have constant UTI - 5 time as a year. Now my creatinine level start to increase. Did anyone have this situation? Any suggestions? Thank you
farber
in
CLL Support
2 years ago
My father has Peripheral t cell lymphoma
My father has Peripheral t cell lymphoma of stage 4 Doctor started 6 cycles of CHOEP . Does Stem cell transplant is the permanent cure ?
My father has Peripheral t cell lymphoma of stage 4 Doctor started 6 cycles of CHOEP . Does Stem cell transplant is the permanent cure ?
NikhilSantosh
in
CLL Support
2 years ago
Dostarlimab - Check point inhibitor
Some of you may have already read about a new check point inhibitor, Dostarlimab, which cured 100% of clinical trial patients (only 12 in advance stage) who had Colorectal cancer. Now all the patients have been cured and all treatment stopped. The best part was that the new drug had minimal side effects
Some of you may have already read about a new check point inhibitor, Dostarlimab, which cured 100% of clinical trial patients (only 12 in advance stage) who had Colorectal cancer. Now all the patients have been cured and all treatment stopped. The best part was that the new drug had minimal side effects
nuji
in
CLL Support
2 years ago
Visit with new Hem/Onc Dr went well!
Hi Friends, I had my first visit with my new local doctor. He is Associate Head of Stem Cell Transplant Dept with Ochsner in Louisiana. He does not treat any cancers other than blood. He listened and verbalized understanding that my previous Dr’s were not a fit for me. He reviewed my BMB from Vanderbilt
Hi Friends, I had my first visit with my new local doctor. He is Associate Head of Stem Cell Transplant Dept with Ochsner in Louisiana. He does not treat any cancers other than blood. He listened and verbalized understanding that my previous Dr’s were not a fit for me. He reviewed my BMB from Vanderbilt
Wewo01
in
MPN Voice
2 years ago
Vitamin results are in, advice please.
I finally managed to get a Ferritin test from GP after latest Medichecks showed it had gone down despite taking 20mg of Solgar Gentle Iron. Well, the NHS one shows it’s gone up to 31 from 24 which is amazing really as I haven’t been taking any iron for two weeks!!! So I’m getting no help from them.
I finally managed to get a Ferritin test from GP after latest Medichecks showed it had gone down despite taking 20mg of Solgar Gentle Iron. Well, the NHS one shows it’s gone up to 31 from 24 which is amazing really as I haven’t been taking any iron for two weeks!!! So I’m getting no help from them.
Joant24
in
Thyroid UK
2 years ago
help with drinking 2 to 3 litres of water a day.
post allogeneic stem cell transplant I have been told I need to drink at least 2litres of water a day. With the medication I'm on I cannot drink plain water and have to flavour it and have with plenty of ice. Butstill find it difficult. Any advice on managing to get my full amount of water would be
post allogeneic stem cell transplant I have been told I need to drink at least 2litres of water a day. With the medication I'm on I cannot drink plain water and have to flavour it and have with plenty of ice. Butstill find it difficult. Any advice on managing to get my full amount of water would be
Kraskie1915
in
CLL Support
2 years ago
ET progression to MF - anxiety issues
My ET is now progressing to Post ET Myelofibrisis. My hemo has recommended I start on Ruxolitinib & also to be considered for a stem cell transplant. I know some of you have been in the same situation. Am I correct in thinking MF is life limiting? Also how have any of you coped on Rux? I feel very
My ET is now progressing to Post ET Myelofibrisis. My hemo has recommended I start on Ruxolitinib & also to be considered for a stem cell transplant. I know some of you have been in the same situation. Am I correct in thinking MF is life limiting? Also how have any of you coped on Rux? I feel very
SRH55
in
MPN Voice
2 years ago
O&V treatment - a positive update from ‘The Kitchen’
Hello everyone, Cycle #2 of O was a pleasure, I was treated to a relaxing aromatherapy reflexology session. Hats off to Guy’s Cancer Centre, you really know how to look after your guests…if you could possibly provide champagne and canapés next time, that would really tick the box 😉 So today was the
Hello everyone, Cycle #2 of O was a pleasure, I was treated to a relaxing aromatherapy reflexology session. Hats off to Guy’s Cancer Centre, you really know how to look after your guests…if you could possibly provide champagne and canapés next time, that would really tick the box 😉 So today was the
Miu48
in
CLL Support
2 years ago
The Polymyalgia Rheumatica Diet: The Ultimate Nutritional Guide To Reversing And Managing Polymyalgia Rheumatica And Giant Cell Arteritis
Has anyone read this book by Hunwick Debby? Did they find it useful? Generally does your diet help improve your condition?
Has anyone read this book by Hunwick Debby? Did they find it useful? Generally does your diet help improve your condition?
Yorksman
in
PMRGCAuk
2 years ago
Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition. By Kate Gilbert
Have you all read the above book by Kate Gilbert? It’s a must if you are a sufferer of PMR or GCA. So much sound practical information and we all know that knowledge is power. Good luck on your journey fellow sufferers. The light is at the end of the tunnel. XxX
Have you all read the above book by Kate Gilbert? It’s a must if you are a sufferer of PMR or GCA. So much sound practical information and we all know that knowledge is power. Good luck on your journey fellow sufferers. The light is at the end of the tunnel. XxX
SouthStrand
in
PMRGCAuk
2 years ago
Parietal Cell Antibody test refused by GP
I posted a few weeks back about my Dad who I suspect has b12 absorption problems either as a result of low stomach acid or PA. He tested negative for IF antibodies so zi asked a GP at his surgery if they would test for Parietal Cell antibodies. She didn't seem to know what I was talking about?! Said
I posted a few weeks back about my Dad who I suspect has b12 absorption problems either as a result of low stomach acid or PA. He tested negative for IF antibodies so zi asked a GP at his surgery if they would test for Parietal Cell antibodies. She didn't seem to know what I was talking about?! Said
Needleandthread44
in
Pernicious Anaemia Society
2 years ago
Update and meeting the team.
I’ve had lost of tests done over the past few months. I met up the the transplant team. I’m looking at 5-10 years for a bone marrow transplant, they said it could be earlier, as I’m still working and I’m well enough they don’t want to do it to early. I will need to take year off work, (when the time
I’ve had lost of tests done over the past few months. I met up the the transplant team. I’m looking at 5-10 years for a bone marrow transplant, they said it could be earlier, as I’m still working and I’m well enough they don’t want to do it to early. I will need to take year off work, (when the time
wendycu
in
MPN Voice
2 years ago
Waiting for Pirtobrutinib
My husband has been on venetoclax for 3 years and a recent bone marrow biopsy shows cancer is growing and is up to 60%. His oncologist wants to put him on Pirtobrutinib, but it isn’t available yet. Does anyone know we can gain early access to this drug? He is 76 , diagnosed 13 years ago. He was
My husband has been on venetoclax for 3 years and a recent bone marrow biopsy shows cancer is growing and is up to 60%. His oncologist wants to put him on Pirtobrutinib, but it isn’t available yet. Does anyone know we can gain early access to this drug? He is 76 , diagnosed 13 years ago. He was
KLWC
in
CLL Support
2 years ago
Mantle Cell Lymphoma...need best treatment options
Can anyone help with
Mantle
Cell
Lymphoma
and what treatments are available? I know this forum is for CLL/SLL but does anyone have any information on this? A good friend was diagnosed yesterday, Stage 4, and he says he won't take the radiation/drip treatment.
Can anyone help with
Mantle
Cell
Lymphoma
and what treatments are available? I know this forum is for CLL/SLL but does anyone have any information on this? A good friend was diagnosed yesterday, Stage 4, and he says he won't take the radiation/drip treatment.
DawnRedwood
in
CLL Support
3 years ago
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