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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. cinzia
Hi Cinzia and welcome to our group you will find lots of support here but what a shame you couldnt find anything closerto home . You had such a long hard haul to get a diagnosis it must have been a relief to find out the cause, and a huge shock at the same time Good to hear the CDT is getting good results , just dont overdo things as it does takes its toll on you There is no point worrying about chores when you are on heavy chemo, let someone else look after you if you can . The heart scan is something they all check before an sct although I didnt have an mri, just ecg and another type of heart scan Sorry I cant help regarding the amyloidosis but I am sure someone will be able to. The sct is not a lot of fun but it will definitely be worth it and gain a long remission,free from treatment There are lots of posts on here written as people were having their sct if you use the search box you should be able to find some. Usually you are given a short coourse of chemo then possibly a week later you will be hooked up to a macine to collect your stem cells It isnt painful , the worst bit is having a line in each arm , so take a book or something with you It can take a day to get what they need for transplant After a week or two sometimes sooner you will be given a very strong dose of Melphalan which kills off everything , both cancer cells and those that arent cancerous , from your bone marrow Make sure you have ice pops or cubes to suck whilst you are having Melphalan as it helps to prevent your mouth getting sore and painful. Possibly the next day you will be given your own stem cells back and they start to grow healthy bone marrow with little or no cancer cells . Usually you dont feel too bad till a few days later , in my case it started with sickness then diarrhoea and a high temp This is the time you need to be in hospital , but each hospital has its own way of doing things so you may already be there. Around about a week later is often when your hair starts to fall out , if it is making you feel worse get someone to shave it off which is what I did Often its only a stay of about 2 weeks in hospital but everyone is diffrent so its hard to say exactly , I was in hospital for 5 weeks when I had my sct 5 years ago You will sleep a lot as well If you are having problems with sickness they will make sure you get the right anti-sickness tabs Once you get home the best thing to do is rest when you need to and dont try and rush things As I said before everyone is different and depending on your age and general fitness you may be out of hospital in no time but make sure you dont overdo it at home It is a bit of a pain having to tell family and friends to stay away if they are unwell but you have to be extra careful as your immune system will be very low. Sorry for rambling on if I havent put things very clearly just let me know. I am sure others will answer your post too Good luck and takecare love Bridget
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 Cinzia
Every person's experience of SCT seems different My husband was diagnosed in 2008 He sailed through his first SCT and felt quite guilty as yes some people do seem to go through the mill. Unfortunately his second SCT did not take but he is on revlimid and doing well.
I do hope everything goes well for youu Good luck and keep us all posted. You will get great support from this site
Gill xx
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
Hi Cinzia, Sorry I haven't been on here in a while I have only just seen your post. My dad aged 63 had MM and AL Amyloid. He had CDT last year with a hope to harvest stem cells after his kidney function improved, he has Amyloid deposits in his tongue and some in his kidney, can I ask where they have detected yours? My Dad has to travel to London every 6months to have a SAP scan which is the only scanner in the UK we have met people who have travelled from USA to have a scan, this is the best way to pinpoint where deposits are and moniter them. If you visit http://www.ucl.ac.uk you can find out more info, my dad had a complete response with CDT for both Amyloid and MM however his MM had reared its head after just a year. Amyloid does make you very tired my dad was told to as much as he is able to do but not to push himself too much. Amyloid is such a rare condition but like MM things are progressing all the time please contact me any time if you need more info Clara xxx
Hi Cinzia
Hello and welcome,
i think like me a lot of people have missed you joining the forum,because unless you have a related condition you tend not to go in to that subject.
My post now is just to say welcome and hope you have a good response.Eve
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
Hi Cinzia, you are most welcome I know how difficult it is to try and find other people with AL and when you have MM to deal with to it's alot! I can only imagine how you must be feeling having children and trying your best to be strong for them and your husband I do hope your heart heals and you get your SCT do they have SAP scanners in Australia? My Dad's tongue has remained the same his consultant said some people see a reduction but dad's has remained enlarged he can swallow but feels as though there is to much saliva in his mouth at times I suppose it's a positive that treatment for AL & MM go hand in hand and deals with both conditions it's great that 2 Lots of velcade have worked for you I hope this is the same for my Dad I know everyone responds differently. My dad's not on the internet or this forum but if you need to know anything else both himself and I are happy to help as the conditions rare it's good to have someone to check in with now and again,
Wishing you all the best
Love C xxx
Hi Cinzia,
This is Eva from Scotland. I have plain myeloma but I'm writing to you because I have spent a huge portion of my life in Melbourne. I've often wondered what treatment would have been like if I'd stayed in the country of my birth. In Scotland I think we can get Velcade at relapse. I have heard of someone in the UK get Velcade for induction treatment after they had trouble tolerating the other meds.
Which part of Oz are you from? I was also diagnosed at a fairly young age – 52.
Eva
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
Dear Cinzia,
I'd be delighted to write about my treatment options, and about Melbourne, but do you think it would be ok if I wrote to an email address?
Best,
Eva
PS My email is evayouren@lineone.net
Cinzia,
My name is Alan and I have just registered. I live in Melbourne also and have just found out that I have MM and AL. I was at the Alfred last week for a scan using the MRI machine in Research and Development mode which can do lots more than the standard MRI to detect Amyloid. My question is, what is the name of the Cardiologist at the Alfred who specialises in Amyloid. My Cardiologist said that he and probably most others have little knowledge of the problem. My Haemo is good but refers to a specialist in Brisbane.
Kindest Regards
Alan
Hi Alan
If you go to the first person on this thread,Name is Cinzia,click on the black spot were a picture usually is,his details come up,and you can send a private E mail to him,via Myeloma.|He lives in Australia and might be able to help you.
I hope this is useful.apart from that welcome to the site,i do know there are people on here with Amyloids and Myeloma,so you might find this site useful.
I am surprised the search engine cannot turn up his name at Alfred
Good Luck Eve
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
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