Between possible diagnosis yesterday & wake up today, looking forward to maybe feeling better. Hope to have a few or ten more good years. Get treatment a the VA, Cardiologist says I will not need to worry about the expensive meds will be provided free.
Keep up your positive outlook and thanks for sharing your story. My husband was just diagnosed with AL amyloidosis, he's 74 and in Sept he was laying 69 pound sidewalk blocks. Now, heart failure, 30 % capacity, amyloids in the heart and kidney. Edema is a huge issue, and smouldering myeloma, having found out he has a blood disease called MGUS. Chemo is not an option as his heart is too weak. Wishing there was something else to help.....
Sorry JC... Amyloidosis is a tough disease. Unfortunately the medical community is not trained to test for amyloidosis, and as a result, many people don't get diagnosed until it's too late. I was too weak to do a stem cell transplant, yet I was able to do an chemo treatment known as Cy-Bor-D. Ask about Cy-Bor-D
@@DanLier thanks, I am glad that helped you. His heart is quite compromised (30% function) and according to the team it's doubtful he would survive chemo.
Enjoyed your rant there Dan and found you while on another Amyloid announcement of some new research that sounded rather positive and so I will list it below . I am also a lucky guy who got AL Amyloidosis and lucky ( correct diagnosis the key) to land a medical trial on the 'new kemo stuff'. and yes it worked and after 12 months I heard the words full remission ... I have had almost 7 years now. and yes still go to sleep real easy and have to be careful driving and stay at short distances or those stops at the traffic light can give you a scare . Like you the positivity was a key and the Mates down the lawn bowls club were a god send to me . 80 plus guys with every disease known to man and dropping off the twig each year with some disease or other . The support and daily comment of 'gees you look yellow today' and then better the next kept me on a high . MUST Never forget my wife that was the real hero as she was on to me 100% of the time and always in the room with me and even the MRI room with the technicians and always she remembered the numbers ,and so I could not have done it without her positivity I am sure .. Kidneys were shot and in the heart so really watch the diet and yes exercise at the gym and stay off those protein powders as recently it almost did me in . Why would a 77 year old guy want to build muscles ..geees come on so off the powders and getting back to a controllable level . Today was results day from all the tests and yes again FULL REMISSION.... here was that story that got me looking and I found you . th-cam.com/video/fdMn3LmoDCA/w-d-xo.html.
Hi Dan. My 8 year old son said to me yesterday "Mom, you're really lucky that you're still here...like that man that talks about amyloidosis, he's lucky too." He remembers you and your talks. What do you think about a twenty year reunion? Our prayers and thoughts are with you.
Excited to hear you and Isabelle Lousada speak at the HFSA meeting in Nashville. I had already planned to attend to pick up some CME. As a diagnostic radiologist, I had never focused much on heart failure, but as a cardiac amyloidosis patient, it is now my daily focus! My family and I appreciate your posts- you give us hope just by staying alive and continuing to post. Keep it up!
Hello Dan I have just had my Amyloidosis diagnosis July 12th after 5 year of poor health. May 3rd I saw my doctor who sent me straight to hospital where they told me I had heart failure after a few days tests the consultants talked about cardiac amyloid? Well on July 17th I refered to London Royal Free hospital the National Amyloidosis Centre for 3 days of tests, this helped them define the type of amyloid I have which is the ATTR Thr60Als (Hereditory) which is made by the Liver so chemotherapy is of no use in this particular strain of amyloid. I am frustrated that my heart failure had to happen before I got the diagnosis, also it's a relief to have the diagnosis I have no treatments that will cure or fix this, so whatever time I have I make the most of. Good luck I hope you get your 10 years and more
T. Hopper Thanks for the reply my Doctor at the Royal free hospital in London has managed to get me on a compassionate treatment ( Diflunisal 250mg twice a day ) this treatment may slow down the amyloid produced by my liver so there is some hope this will give me some extra time. For that I am very grateful.
Good to hear, Mike. Also check out this article: www.nature.com/articles/d41586-018-05867-7 and some additional drugs currently in clinical trials, such as Inotersen Iclinicaltrials.gov/ct2/show/NCT03400098 and PRX004 clinicaltrials.gov/ct2/show/NCT03336580
Ok...so how are you now Dan? Ate you taking doxycycline? I took that on my 4th treatment and things turned around...that was 2 yrs ago...I am technically in remission...doing maintenance monthly for the last 2 yrs..so far so good.
Hi Dan i am brazilian, so sorry for my bad english. my mom have the same problem of you, amyloidoses and now after the treatment of chimio, she will do autologous bone marrow transplantation, on August of this year. Will he do this too after your treatment? I am praying for you too. God bless you! Thiago from Brazil.
Between possible diagnosis yesterday & wake up today, looking forward to maybe feeling better. Hope to have a few or ten more good years. Get treatment a the VA, Cardiologist says I will not need to worry about the expensive meds will be provided free.
Keep up your positive outlook and thanks for sharing your story. My husband was just diagnosed with AL amyloidosis, he's 74 and in Sept he was laying 69 pound sidewalk blocks. Now, heart failure, 30 % capacity, amyloids in the heart and kidney. Edema is a huge issue, and smouldering myeloma, having found out he has a blood disease called MGUS. Chemo is not an option as his heart is too weak. Wishing there was something else to help.....
Sorry JC... Amyloidosis is a tough disease. Unfortunately the medical community is not trained to test for amyloidosis, and as a result, many people don't get diagnosed until it's too late. I was too weak to do a stem cell transplant, yet I was able to do an chemo treatment known as Cy-Bor-D. Ask about Cy-Bor-D
@@DanLier thanks, I am glad that helped you. His heart is quite compromised (30% function) and according to the team it's doubtful he would survive chemo.
@@jmmc59375 Sigh... so sorry.
@@DanLier thank you. I am still hopeful that something will come up that will help. I keep searching. Prayers for you too 🙏
@@jmmc59375 How is your husband now?
Enjoyed your rant there Dan and found you while on another Amyloid announcement of some new research that sounded rather positive and so I will list it below . I am also a lucky guy who got AL Amyloidosis and lucky ( correct diagnosis the key) to land a medical trial on the 'new kemo stuff'. and yes it worked and after 12 months I heard the words full remission ... I have had almost 7 years now. and yes still go to sleep real easy and have to be careful driving and stay at short distances or those stops at the traffic light can give you a scare . Like you the positivity was a key and the Mates down the lawn bowls club were a god send to me . 80 plus guys with every disease known to man and dropping off the twig each year with some disease or other . The support and daily comment of 'gees you look yellow today' and then better the next kept me on a high . MUST Never forget my wife that was the real hero as she was on to me 100% of the time and always in the room with me and even the MRI room with the technicians and always she remembered the numbers ,and so I could not have done it without her positivity I am sure .. Kidneys were shot and in the heart so really watch the diet and yes exercise at the gym and stay off those protein powders as recently it almost did me in . Why would a 77 year old guy want to build muscles ..geees come on so off the powders and getting back to a controllable level . Today was results day from all the tests and yes again FULL REMISSION.... here was that story that got me looking and I found you . th-cam.com/video/fdMn3LmoDCA/w-d-xo.html.
My dad has Al amyloidosis
Big sap scan in London tomorrow
Feeling hopeful but very nervous
Love your positive attitude x
Ray Ray , my husband has been diagnosed, how is your dad now? We are in the UK, I am so worried about him. We have not been to the London centre yet.
Hi Dan. My 8 year old son said to me yesterday "Mom, you're really lucky that you're still here...like that man that talks about amyloidosis, he's lucky too." He remembers you and your talks. What do you think about a twenty year reunion? Our prayers and thoughts are with you.
Excited to hear you and Isabelle Lousada speak at the HFSA meeting in Nashville. I had already planned to attend to pick up some CME. As a diagnostic radiologist, I had never focused much on heart failure, but as a cardiac amyloidosis patient, it is now my daily focus! My family and I appreciate your posts- you give us hope just by staying alive and continuing to post. Keep it up!
What is CME ?
Thanks in advance
Hello Dan I have just had my Amyloidosis diagnosis July 12th after 5 year of poor health. May 3rd I saw my doctor who sent me straight to hospital where they told me I had heart failure after a few days tests the consultants talked about cardiac amyloid? Well on July 17th I refered to London Royal Free hospital the National Amyloidosis Centre for 3 days of tests, this helped them define the type of amyloid I have which is the ATTR Thr60Als (Hereditory) which is made by the Liver so chemotherapy is of no use in this particular strain of amyloid. I am frustrated that my heart failure had to happen before I got the diagnosis, also it's a relief to have the diagnosis I have no treatments that will cure or fix this, so whatever time I have I make the most of. Good luck I hope you get your 10 years and more
Dear Mike, there are a number of treatment or disease-delaying options available for ATTR patients. Please look into this a bit more.
T. Hopper Thanks for the reply my Doctor at the Royal free hospital in London has managed to get me on a compassionate treatment ( Diflunisal 250mg twice a day ) this treatment may slow down the amyloid produced by my liver so there is some hope this will give me some extra time. For that I am very grateful.
Good to hear, Mike. Also check out this article: www.nature.com/articles/d41586-018-05867-7 and some additional drugs currently in clinical trials, such as Inotersen Iclinicaltrials.gov/ct2/show/NCT03400098 and PRX004 clinicaltrials.gov/ct2/show/NCT03336580
T. Hopper Thanks for the information, knowledge is power over my condition
Look at new Patisiran RNAi treatment.
I love your attitude. I will follow your attitude.
keep up the fight I'm with you!
Ok...so how are you now Dan? Ate you taking doxycycline? I took that on my 4th treatment and things turned around...that was 2 yrs ago...I am technically in remission...doing maintenance monthly for the last 2 yrs..so far so good.
I'm with you also.
Hi Dan i am brazilian, so sorry for my bad english. my mom have the same problem of you, amyloidoses and now after the treatment of chimio, she will do autologous bone marrow transplantation, on August of this year. Will he do this too after your treatment? I am praying for you too. God bless you! Thiago from Brazil.
Hello Dan, what’s your opinion on green tea extracts to help with amyloidosis?
Minerals like potassium bicarbonate are diuretic. So is magnesium citrate and sodium bicarb... Lots of benefits only side effect... Diarrhea.