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Cll back after 4yrs
Hospital found lymph nodes in neck and think my leukaemia is back. I have been cancer free for4yrs. Has this happened to anyone else. What happens next.
Hospital found lymph nodes in neck and think my leukaemia is back. I have been cancer free for4yrs. Has this happened to anyone else. What happens next.
Daisy1993
in
CLL Support
6 months ago
Does anyone have CLL and MDS?
I was diagnosed with CLL in 2010. They started treatment with B R in 2011. Went into remission for a year but then lymph nodes started to return Imbruvica was just approved by FDA was on imbruvica for 5 year. Went into remission again for two years. I was testing with low dose again with imbruvica
I was diagnosed with CLL in 2010. They started treatment with B R in 2011. Went into remission for a year but then lymph nodes started to return Imbruvica was just approved by FDA was on imbruvica for 5 year. Went into remission again for two years. I was testing with low dose again with imbruvica
DaveCll
in
CLL Support
6 months ago
Arginine and Taurine
Has anyone here had success with Arginine/Taurine/Magnesium? My Naturopath is willing to have me try but I am wondering if anyone has any firsthand knowledge out there of how long it takes to see results or not? Thanks!
Has anyone here had success with Arginine/Taurine/Magnesium? My Naturopath is willing to have me try but I am wondering if anyone has any firsthand knowledge out there of how long it takes to see results or not? Thanks!
MeganMN
in
AF Association
10 months ago
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aimovig success so far
thanks to all messages regarding aimovig- pleased to say there’s a clear reduction in severity and frequency of migraines after two injections. I’m taking less triptans because the pain and other symptoms often come but then go away on their own or with regular pain relief. I’m hoping this improvement
thanks to all messages regarding aimovig- pleased to say there’s a clear reduction in severity and frequency of migraines after two injections. I’m taking less triptans because the pain and other symptoms often come but then go away on their own or with regular pain relief. I’m hoping this improvement
Discodog
in
National Migraine Centre
10 months ago
To Trial or not to Trial?
I have decided not to trial. Going to just do the Venetaclax & Obin protocol. I’m just not in the mood for the extra appointments and brain damage that invariably comes with them. I’m waiting for a start date. Had the bone marrow biopsy and endless other tests this week - decided not to peek at the
I have decided not to trial. Going to just do the Venetaclax & Obin protocol. I’m just not in the mood for the extra appointments and brain damage that invariably comes with them. I’m waiting for a start date. Had the bone marrow biopsy and endless other tests this week - decided not to peek at the
SunnyCA
in
CLL Support
6 months ago
Immune system changes during BTKi treatment
Hi, as a relative newbie here, please forgive me if this is a really naive question. I am soon to begin treatment with a BTKi drug. I know that having (a mutated form) of CLL means that my immune system is significantly suppressed and that BTKi treatment will further inhibit the immune system. My haematologist
Hi, as a relative newbie here, please forgive me if this is a really naive question. I am soon to begin treatment with a BTKi drug. I know that having (a mutated form) of CLL means that my immune system is significantly suppressed and that BTKi treatment will further inhibit the immune system. My haematologist
Fogey
in
CLL Support
6 months ago
MRD Results
My hubby's CLL Dr called today and gave us the good news. My hubby's blood has zero CLL, and his bone marrow dropped 25% to .12%. His Dr wants him to keep taking his venetoclax and acalabrutinib so that his bone marrow gets CLL lower or totally out. To date, my hubby will be on this treatment 1 year
My hubby's CLL Dr called today and gave us the good news. My hubby's blood has zero CLL, and his bone marrow dropped 25% to .12%. His Dr wants him to keep taking his venetoclax and acalabrutinib so that his bone marrow gets CLL lower or totally out. To date, my hubby will be on this treatment 1 year
spi3
in
CLL Support
6 months ago
Visual disturbances after ablation
1 week post op and everyday I have had vision issues... blurriness, auras, tunnel vision. It happened while I was in the hospital still and they ruled out stroke, but the issue has persisted. Wondering if anyone else has experienced vision issues after an ablation and can provide some insight Thanks!
1 week post op and everyday I have had vision issues... blurriness, auras, tunnel vision. It happened while I was in the hospital still and they ruled out stroke, but the issue has persisted. Wondering if anyone else has experienced vision issues after an ablation and can provide some insight Thanks!
CanadianAfiber
in
AF Association
10 months ago
Supplements for fibromyalgia/ chronic migraine
HiI have a h/ o fibromyalgia and recently diagnosed hypothyroid but for the last year I feel permanently migranous. I was having 2 a week last summer but after using magnesium patches they disappeared(!) but they are now back( still using the patches) Thinking of trying co- enzyme q10 and have ordered
HiI have a h/ o fibromyalgia and recently diagnosed hypothyroid but for the last year I feel permanently migranous. I was having 2 a week last summer but after using magnesium patches they disappeared(!) but they are now back( still using the patches) Thinking of trying co- enzyme q10 and have ordered
Rainbowangel
in
Fibromyalgia Action UK
1 year ago
Venetoclax
Hi all Well we finally got to see a specialist. They did a bone marrow biopsy which showed 50% CLL infiltration on top of the pancytopenia. They have suggested treatment with Venetoclax only which they have said may reduce the frequency of transfusions which is currently weekly. I have only ever
Hi all Well we finally got to see a specialist. They did a bone marrow biopsy which showed 50% CLL infiltration on top of the pancytopenia. They have suggested treatment with Venetoclax only which they have said may reduce the frequency of transfusions which is currently weekly. I have only ever
JoeMcDote
in
CLL Support
6 months ago
Imnusupressants Post Transplant
Hello,Im wondering how this whole suppressed immune system works? My husband and I have got covid (6 weeks post TP for him). The whole household has pretty much had it all at the same time, but how will hubbys recovery differ? Is he less likely to recover as quick, more prone to secondary infection
Hello,Im wondering how this whole suppressed immune system works? My husband and I have got covid (6 weeks post TP for him). The whole household has pretty much had it all at the same time, but how will hubbys recovery differ? Is he less likely to recover as quick, more prone to secondary infection
Ewife
in
British Liver Trust
20 days ago
Tacrolimus vs cyclosporin
Hi, I am currently working with my rheumatologist to plan for second pregnancy. My daughter is 3.5 years old and I was on tacrolimus during my pregnancy (I usually take MMF). I remained relatively well and stable throughout but there were alot of issues with maintaining the tacrolimus concentration
Hi, I am currently working with my rheumatologist to plan for second pregnancy. My daughter is 3.5 years old and I was on tacrolimus during my pregnancy (I usually take MMF). I remained relatively well and stable throughout but there were alot of issues with maintaining the tacrolimus concentration
SonyaNME
in
LUPUS UK
1 month ago
Is it ok to smoke marijuana or to take edibles with cll?
It gives me relief from general anxiety and unsettling feeling of going to a medical facility. Has anyone had any experience with using this for the two reasons mentioned above? Thank you.
It gives me relief from general anxiety and unsettling feeling of going to a medical facility. Has anyone had any experience with using this for the two reasons mentioned above? Thank you.
Jessielab
in
CLL Support
6 months ago
Good News!!!
My dr. approved the buprenorphine for me. I am thinking positive that it will work. She is giving me the patch. I am excited. I have to discontinue the horizant though which surprised me and of course discontinue the oxycodone. Hopefully now you won't have to listen to me complaining and I will
My dr. approved the buprenorphine for me. I am thinking positive that it will work. She is giving me the patch. I am excited. I have to discontinue the horizant though which surprised me and of course discontinue the oxycodone. Hopefully now you won't have to listen to me complaining and I will
lorri214
in
Restless Legs Syndrome
2 months ago
itching
I had a transplant 18 months ago and 6 days ago the hospital reduced my Tacrolimus and increased my Prednisolone to improve my kidney function (although it was no worse than it has been since the transplant). I’m gradually increasing the Tac and decreasing the Prednisolone but today lve started itching
I had a transplant 18 months ago and 6 days ago the hospital reduced my Tacrolimus and increased my Prednisolone to improve my kidney function (although it was no worse than it has been since the transplant). I’m gradually increasing the Tac and decreasing the Prednisolone but today lve started itching
Pie-eater
in
British Liver Trust
2 months ago
Vasculitis in the pancreas?
Has anyone with GPA or MPA been diagnosed with pancreatic issues due to vasculitis? Hubby had has GPA for 15 years, kidney transplant and sinus involvement and most often in remission until now. He has lost 40 pounds( not trying) and must take enzymes to digest food with a very bland diet. All this happened
Has anyone with GPA or MPA been diagnosed with pancreatic issues due to vasculitis? Hubby had has GPA for 15 years, kidney transplant and sinus involvement and most often in remission until now. He has lost 40 pounds( not trying) and must take enzymes to digest food with a very bland diet. All this happened
Sandalsforever
in
Vasculitis UK
2 months ago
Should I be worried?
Hi All, my Haemo Lady, just called me with my Bone Marrow Biopsy results, She, said they were heavily infiltrated with CLL. A recent body scan also showed a large lump in my stomach, she is not sure if it is related to my CLL, or perhaps an aggressive lymphoma. She has ordered a needle biopsy of this
Hi All, my Haemo Lady, just called me with my Bone Marrow Biopsy results, She, said they were heavily infiltrated with CLL. A recent body scan also showed a large lump in my stomach, she is not sure if it is related to my CLL, or perhaps an aggressive lymphoma. She has ordered a needle biopsy of this
Vindicatrix
in
CLL Support
7 months ago
venetoclax and obinutuzumab treatment for cll
Hi, I have finished the above 12 months treatment for cll tp53 mutated, I now have 2 monthly checks and my lymphocytes are low, is this a cause for concern?
Hi, I have finished the above 12 months treatment for cll tp53 mutated, I now have 2 monthly checks and my lymphocytes are low, is this a cause for concern?
dellkota
in
CLL Support
7 months ago
First six-month blood test, and my lymphocytes have gone down!
I’m soon to be 55. I was diagnosed in the UK with MBL this summer. My lymphocytes were at six with over 50% of them monoclonal cells. I’ve just had my six-month check. I’ve come down to 4.8. I know that these numbers can move around quite a lot, but for now I’m really happy with the trend. I did change
I’m soon to be 55. I was diagnosed in the UK with MBL this summer. My lymphocytes were at six with over 50% of them monoclonal cells. I’ve just had my six-month check. I’ve come down to 4.8. I know that these numbers can move around quite a lot, but for now I’m really happy with the trend. I did change
Jazzandblues
in
CLL Support
7 months ago
Changing Medication
Hi I’m just looking for some advice on Targinact and just Oxycodone please. My neurologist wrote to my GP requesting that I be prescribed Targinact 10mg at night and 5mg mornings increasing if necessary by 5mg increments to maximum of 20mg twice a day, also changing the Venlafaxine I take to either
Hi I’m just looking for some advice on Targinact and just Oxycodone please. My neurologist wrote to my GP requesting that I be prescribed Targinact 10mg at night and 5mg mornings increasing if necessary by 5mg increments to maximum of 20mg twice a day, also changing the Venlafaxine I take to either
Felixstowe
in
Restless Legs Syndrome
3 months ago
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