Hi Alan,
So sorry you have received this diagnosis. Just want to assure you that there are some fantastic specialists with loads of knowledge and expertise on AL and MM in Melbourne. My haematologist is Andrew Spencer and he treats many patients with AL and MM (apparently a leading researcher in this field in Australia)- I see him privately near the Epworth at Richmond but he also works at the Alfred. He referred me to Angeline Leet at the Alfred (cardiologist). She sees patients (within the public system) with amyloidosis related heart failure from Melbourne, Tasmania and South Australia. She is currently on maternity leave but she assured me that her temporary replacement is more than capable (sorry I don't have the name of her replacement but if you contact the Heart Centre at the Alfred they can tell you. I unfortunately was admitted a few times into the cardiology wards late last year. The team were fantastic (including the heart failure coordinators). If you would like to email me outside this forum for further information please email cinziaz4@hotmail.com. I wish you luck with your treatment and am happy to provide you with any information I have. Let me know what treatment you have commenced – take care
Hi Eva – from Melbourne to Scotland – that's quite an adjustment. I have lived between the UK and Australia all my life. My childhood in London, young adulthood in Melbourne, back to London for 16 years until I turned 40 and now back in Melbourne again. Love both places so much. The cost of Velcade here is $1800 per injection and it is only available on relapse. The good news is that the pharmaceutical company will start manufacturing the velcade in smaller vials from next month (at the moment I pay for a 3ml vial and they throw half of it away). Although my light chain results were normal after 2 injections, I went on to have 4 in total (weekly injections). I am now having them monthly until I have had 8 in total – I assume they are hoping for a deeper, longer lasting result. I am being treated privately at the Epworth for the Velcade but my haematologist and cardiologist both specialise in amyloidosis and MM and they work at the Alfred. I must say the treatment I get from my haem and cardiologist teams(as both an inpatient and outpatient) is amazing. From what I can gather treatment options are similar here and in the UK although there is no amyloid scanner here (which wouldn't be an issue for you as you have MM without amyloidosis). My haem is Australia's leading expert on both conditions and my cardiologist sees patients from SA, Vic and Tas as she is the expert on cardiac amyloid. I feel like I am in good hands. I believe there is a bid to have Velcade available as a first line treatment in Australia for those who do not tolerate Thalidomide or those who are not candidates for SCT. What were your treatment options in Scotland? Take wonderful care. Cinzia x
Hi Clara,
Sorry to hear your dad's MM has returned – I hope his next course of treatment is successful and that he tolerates it well.
My CDT had a good partial response but after 8 months of it they thought it unlikely to achieve a complete response. My heart is definitely too weak at the moment for a stem cell transplant so i decided to privately pay for Velcade injections instead (as I am not eligible to receive it here in Australia – only available for relapsed patients(. Only 2 injections did the trick. Now I need to stay i remission in order for my heart to heal – have been admitted twice in the last month due to heart failure but things are now heading in the right direction. My amyloidosis is in my heart, tongue, throat, GI tract and some in my kidney. Its also in my scalp and caused quite bit of hair loss. I know it can take months or even years to heal so I am hoping to stay in remission to give my body time to heal – I know its unpredictable with amyloidosis. Clara, did your dad's tongue return to normal within the year that he was in remission? I really wish your dad well and am very grateful you took the time to post.
Eve, thank you for your kind welcome.
Love Cinzia
just wondering how things are going with you now Tracey…
Hi Duncan, I also have amyloidosis – its in my throat, stomach, liver, heart and scalp strangely enough. I am 48 years old and was diagnosed in Oct last year. Whilst it felt as though the symptoms came on very suddenly, on reflection there were signs earlier. There is much information about amyloidosis on the internet but be careful what you choose to read – the information can be quite old and there has been much progression in recent years. In terms of treatment I was started on CDT (cyclophosphamide, dex and thalidomide). Main side effect for me was 2 days of extreme nausea (yuk)each week and the fact that I no longer enjoy food as it doesn't taste right anymore – this will pass I am told. It worked really well for the first 3 months and then plateaued for the next 3. My lambda light chains reduced from 550 to 60 during this time. My specialist doesn't want me to risk a stem cell transplant as my heart is impacted by the amyloid. My only option was Velcade treatment (which I have to pay for privately as it is only available on relapse in Australia). Aside from the very painful $1800 per week, I have not had any side effects but it is only week 2. We are hoping to get the light chains down over a 10 week period. It is an interesting journey where priorities are examined and relationships deepened. Happy to chat whenever you feel you need it….good luck with your treatment. Take care
Cinzia
thanks Eve – I have started my own post. Hope your husbands SCT goes well – its been confirmed taht its too risky for mine to go ahead. I am taking much comfort in reading other people's stories and everyone's journey is different. I am also going to London later this year to see friends and relatives – are you going there to for tests, etc?
I hear they have an amyloid scanner which is not available in Australia but I have no idea how to access this service.
Thanks again for taking the time to respond to me. Take wonderful care.xx
Hi Nadine and Dai,
I am having similar doubts. I have had a great response from the CDT treatment and am uncertain whether to proceed with the SCT. My specialist wants to discuss other options with me as he understands my reluctance (amyloid has been detected in my heart so the risks associated with the sct are higher). Once I have seen him I am happy to share the information provided – I ma being treated in Australia.
Dai, what treatment have they put you on now? Hoping it all works out for you.
cheers 🙂
Thanks Gill for your kind words and best wishes,
Saw cardiologist today and heart mri revealed amyloid (not surprising really) – SCT may not be an option but will wait to hear from transplant specialist next week. She did reassure me that treatments have come a long way and that if I can't have the SCT there are other drugs which get good results. Pleased to hear your husnband is doing well on his current treatment.
When I look at my husband and the tremendous support he has given me I can honestly say that I draw so much courage and strehgth from him but acknowledge that it must be so hard for him. Family/Carers are worth your weight in gold. I am sure your husband would feel the same.
Take care and I wish your husband continued success with the Revlimid.
Cinzia xxx
Thanks Bridget. Its great to hear about a person's journey and what they exerienced. The sct scares me a little but I know many of you have gone through this. I just have to get used to the idea that it will be a few months of feeling awful and then things start to look up again. Thanks again for your quick response – I don;t feel like its such a lonely journey anymore. I hope your health continues to be good 🙂 love Cinzia
Hi everyone,
I live in Australia but there are no forums I can join there. I have been reading your posts and they do fill me with optimism. I have MM with the added complication of amyloidosis. I am 47 years old and have been experiencing symptoms for over 2 years but no doctor would view my symptms holistically. My swollen ankles were treated with diuretics, the swelling in my throat resulted in the surgical removal of a submandibula gland, my hair loss was seen as alopecia, my fatigue and breathlessness not treated. With the help of a brilliant haematologist, I was finally diagnosed in Oct 2011 and biopsies re-examined from the surgery and the scalp (previously I wa stold everything was normal but now amyloid has been detected in all biopsies). At first I was confused and then a little angry. I am on CDT which is taking its toll but getting good results thankfully. I have good days and bad days but long to feel normal again. Last week I had a heart mri as the transplant specialist won't consider the stem cell transplant unless my heart is 100%. Apparently patients with amyloidosis behave unpredictably to the harvesting and transplant process. I don't mind admitting that I am scared – scared of the sct and of the future. Does anyone on this forum also have amyloidosis? Can anyone let me know what to expect with the sct? Has anyone not needed the sct and had good results without it? My family have been amazing – husband and 2 kids (23 and 14)and I dont know what i would have done without them. I do however feel that i must stay upbeat for their sakes, even when i just want to cry. It must be so hard for them to watch me go through this. Sorry for rambling on – I have so much to say and don't know where to begin. I'm grateful for this forum. 🙂
