You sound like you have done some research so to add to sources mentioned in previous posts I spend most of my time researching in America where the new drugs get approved first an is why as others have rightfully said this is now ( for a lot of us ) a chronic disease with some good new treatments..
On stem cell transplants the attached is a webinar being held on Sept 16th which might be useful
https://event.webcasts.com/starthere.jsp?ei=1346668&tp_key=840e2fb50d
On your search for someone of your own age http://www.Healthtree.org is an amazing resource centre and they have recently added a “find your twin” . You have to enter quite a lot of data whih you might not yet have but they have very helpful people there who can help you – again this is an American site specifically for Myeloma patients and is wy ahead of anything I have found in the UK
The suggestion in the other post that you find yourself a myeloma specialist is very good advice, its a complex and individual condition and can take some time and application to get to grips with, best of luck
Yes you should ( be celebrating ) ! And yes stemcell takes it out of you so not surprising you’re having the odd bad day when you feel a bit deflated ….
Knowledge is power and great for motivation , I’ve been using healthtree.org and thoroughly recommend it – specialist site for myeloma patients. It’s American and takes some work to load all your data but full of great info especially on Healthree University.
Thanks very much , does Nirav make a charge for this service and how do your verify these drugs are not counterfeit?
Mulberry
If you could share contact details of your supplier for Revlimid/Lenalidomide that would be very helpful
Any more update from those looking into this would be very helpful
Dave, good on you and yes that Biopsy made me yelp ! When you’re ready i suspect I can help a bit more with answers to your questions but all Myeloma is different and need to be careful not to make any incorrect comparisons .. I’ve personally found the more research / Knowledge I gained the better i felt about everything.
I looked into the Bone Marrow Transfusion v’s stem cell transplant as I have been confused about this myself … one answer I saw was
“Whether you hear someone talking about a “stem cell transplant” or a “bone marrow transplant,” they are still referring to stem cell transplantation. The only difference is where in the body the transplanted stem cells came from. The transplants themselves are the same.”
Dave, that is one tough journey so far so well done getting back on your feet, yes you should be optimistic mainly because of your age at 57 and that they have successfully operated on your spine plus the huge advances in Treatments available to treat myeloma. You ask about bone marrow transplant but maybe it’s stem cell transplant you mean and there’s a very good briefing document on the web site that sets all this out ….you haven’t talked about your blood test results which is the key to understand your starting point and progress to get ready for the SCT , mainly paraprotein, free light chains and plasma cells in your bone marrow… I’m 58 and had a big lesion (tumour) on my arm that required 10 courses of radiotherapy and 4-6 cycles of chemo. Just started 4th cycle and now prepping for the SCT hopefully in Oct and yes plenty of tears over a shock diagnosis ! Do everything you can to keep your mobility improving and start focusing on your diet all of which helps get ready for the transplant and if that all goes well my views is life expectancy is way more than you imply and I believe will offer a cure for those of us in our 50`S ! Many have said to me dealing with Myeloma is a marathon not a sprint, Hope the chemo is manageable ….Best of luck
Hi Zoe
The xrays and scans are both an important part of the investigation work – did he mention an MRI ? The pain you mentioned in your lower back will be looked at by these scans looking for any cause of that.
It is probably paraprotein levels the next set of blood tests is looking at and these can take about 10 days to come back from the lab – suggest ask for a printed copy of all your blood test results to take away. I have to become much better at understanding blood tests so something to keep you occupied until the 27th …
I found the two key blood test results are Paraprotein and free light chains – I also had a bone marrow sample taken and you might want to ask about whether they plan this for you – it’s a relatively simple
If you do need treatment and Plan of using the NHS maybe quietly research your local hospital and waiting times and expertise in Myeloma.
Hi Zoe
Your GP has done their job by suspecting something and referring you to a haematologist , They are likely to request more blood tests and no single reading (56? ) should be taken in isolation as being particularly significant.
A tip I was given was to record the meeting with the haematologist as they can use a fair bit of jargon that you can miss first time.
I am about 3 months ahead of you now and have found the more you understand how Myeloma is diagnosed ( blood and bone marrow plasma is the key) the better you will feel about how to deal with this and the good news is that even if you do have an issue there are some great treatments available
A lot of what I initially read on the internet is out of date which is why this web site is useful as you can get the latest and really positive developments.
Let us know how your meeting goes and any questions you have… good luck
https://www.myeloma.org/cure-blog/smoldering-myeloma-question
Recent post on US forum you might find useful as reference smouldering Myeloma
Matthew, sorry to hear you and you wife are going through this , I am about 2 months ahead of you after a similar shock so my feedback would be you will know any diagnosis as a result of bone marrow test, scans ( mri and x Ray ) and blood tests… sounds like you are well into this and it is a difficult period whilst you wait for these results – one tip I was given which proved invaluable is to record your meetings with consultant ( ask them first ) and you learn so much when you listen back especially if they slip into the jargon. Myeloma is not straightforward to diagnose and you need all these tests to be done and they will all be helpful for you both to understand this and to ensure you get the right diagnosis which then determines your treatment …
Sorry to hear you and your dad is going through this …I’ve just started on this ….The MRI scan will be helpful and will show up any lesions on the bones that can in itself lead to a diagnosis of MM. Blood tests will also be used to determine the diagnosis. I understand that smouldering is often used when results are below the threshold for a formal diagnosis which then triggers monitoring rather than treatment – in my case I went straight to treatment (radiotherapy on the bone lesions and chemotherapy for the Blood/ bone marrow cancer.) Get to a haemotology consultant as soon as you can and they will help you understand this … it is confusing as Myeloma very individual and not straightforward to get to grips with but once you understand how they diagnose it will help …your dads age and general health will also be a factor in this and something to ask about
Thanks Bren for a very interesting post , this question of whether to go straight into SCT or wait and test remission is something I’m intrigued by , need to get to that stage after 4 months induction. The BBB were carrying a story about C-ART this morning – have you looked at these trials ?
Yes I have been given my first infusion of Zometa. My back Bain is mild as my MM diagnosis was really from fracturing my shoulder where there is a significant lesion being treated with radiotherapy with other mm lesions on my clavicle and spine that are small and not being specifically treated.
Did you consider any alternatives to stem cell treatment and has how has that gone generally against expectations – I’m sensing that is the hard yards part of the treatment.
Do they give you an opening paraproteinn measurement ?
Thanks again for all the responses Sue
Thank you both for you replies which are much appreciated
Sue – was the 6 months what you expected at the outset and if not too intrusive did you start out at stage ISS stage 1 and were you on Lenalidomide as one of the chemo drugs. I have a collapsed vertebrae as well and interested if you had any specific treatment for that. Thank you so much for the help, very much appreciated and as you say overwhelming initially but now getting on top of some of these tail which is helpful
Becki
I was diagnosed 3 weeks ago so have been getting to grips with some of the key initial questions you are asking that cause so
Much confusion and and anxiety. As many have said Myeloma is very individual and all circumstances are different but If I can be of help with these first stage questions and what I did to get some answers including problems in my spine please email me to Stewartalastair@btinternet.com
