Hi. Winnie1974. A lot to take in I have MM diagnosed in June. Undergoing treatment On cycle 4. Of 6. With treatment 2 x per week in hospital. Close by. Did you get any information from your doctors about the treatment plan ? I am receiving DVTB. A combination of drugs. Most. Injected into my abdomen. Not. I. V. And not all are chemotherapy drugs. Then in take some tablets at home. Also a lot of them are side effect management pills. MacMillan have some great helpful books you can download. Or get them sent to your home. Did you have a bone marrow biopsy? I am sure others will reach out to you also. Kevin
Hi Winnie my husband was diagnosed with MM in February this year he has had 4 rounds of dara vtd and had a stem cell transplant at the end of September and so far he has managed well with the treatment. Like yourself he struggled to absorb all the information they give you back at the beginning they use a whole new language which I realise sorry I’ve done when referring to his treatment Dara vtd stands for Daratumumb, velcade , thalidomide and dexamethasone. Have you got someone who can go to the appointments with you a second pair of ears really helps and don’t be afraid to ask lots of questions and anything you don’t understand ring your Cancer nurse they should give you their contact numbers and they are brilliant. They understand that you are scared and are always happy to help . Also there are some pretty good blogs on the internet written by people who are at different stages of the myeloma journey and are living life to the full many are 10 years + in their journeys which is very reassuring to know .
I was diagnosed in June this year, Was on RADAR Trial which my myeloma failed to respond to after 4 cycles, now on DVD as second line. It is a very hard disease I am afraid to get your head round as each one of us is different. I have actually only got my head round which type of myeloma I have after 5 months, not necessarily the fault of my team but i just do not understand. There is a lot of help available from Macmillan, Maggies and of course Myeloma UK who have a lot of publications. You should also be introduced to a team at your hospital.
Never be afraid to ask your team questions and never think your questions are silly.
Hi you, it’s is so much to take in, my wife was diagnosed last year and we have been dealing with this ever since. I’m not going to say this is easy because it’s not but you will need help along the way, but if I can give you any advice at all and you have any life insurance then check it for critical care cover. I only found out about it on this forum and we checked ours. The financial help is one less worry. Stay strong but be prepared for a long journey and a change to your life and some bumps along the way. There is help out there and as keep telling my wife she is not the only one.
I know how you feel. I was diagnosed 5 years ago by sheer luck as I only went to the doctors over a bad knee and after 6 months of head scratching and weekly bloods they tried a biopsy and that's where they found the Myeloma, on my bone marrow.
Apart from being very lucky at catching it meant that I didn't need any treatment and I have been monitored every month since and I fell under the "Smouldering" Myeloma which, like me can smoulder for any given length of time (5yrs)
Have they just told you that you have Myeloma, Asymptomatic Myeloma?
Until my diagnosis I'd never heard of it and like you felt confused, in a surreal state of mind trying to get your head around the fact that you have cancer but you don't feel any different. The only difference is that you have to live with cancer and depending on how far it has progressed there is the possibility that you might pass on with it and not from it.
If you are "Smouldering" then you have some time left to get a lot of things out of the way and come to terms with it in a clearer state of mind.
After 5 years of smouldering mine has just started to become active and we're looking to start Chemotherapy straight after the holidays. As Myeloma patients we all know that it's "in the post" and take it from me a whole new period of anxiety starts.
When I left the hospital after being diagnosed I was given 1 book of information about Myeloma which was a long drawn out overview and sugar coated the important parts.
Get as much information from them as possible, if you are being monitored get your blood test results and as you go along you can track your Myeloma and the important markers (there are some good Web sites about) so that you are better prepared mentally and will keep you up to speed.
Hi Pipp, my name is Sue and my story is very similar to yours . I was diagnosed by accident as MGUS / smoldering 5 years ago .
I was asymptotic but had regular blood tests and apt with Haemotology. March / April 2022 things started to change . I retired April 2022.We had booked to go to Australia to visit our daughter and family for 6 weeks .We were advised to go but get bloods done as soon as we returned . Everything changed when I got back in June , blood tests , scans bone marrow biopsies all confirmed I had myeloma that needed treatment .Even after living with the threat for 5 years it came as an enormous shock and my life / new retirement was turned upside down .Diagnosed officially last week of Aug 2922 a d started treatment 1st week Sept .
After 4 rounds of Darra VTD I had a successful stemcell transplant in April this year .if I have any advice it would be to take time to be kind d to yourself .If you have a bad day remember tomorrow may be better .Take advantage of all the support offered .There is alot out there .Dip into everything and you will find one that fits for you . I'm not sure what support you have but there will be support for them as well . I wish you well with your journey. Take care and if I can help at all please do make contact .
