Hi all. I’m so glad this site exists even though I chose to adopt an ostrich approach (head in the ground), on learning I had multiple myeloma in early March this year (2023). Thank you for existing! It’s taken me this long to look into the condition, albeit very sporadically, and finally post here.
It is a massive shock to hear one has a progressive and incurable disease. I still can’t believe it. I’m 64, lean, fit and a lifelong veggie so did not expect a diagnosis like this, even though on reflection, at least half of us will get some form of cancer according to the latest projections.
I have to say that working full-time has really helped me to keep going as it forces me to think of other things. The medic that did my bone and bone marrow biopsies gave me the best advice. Try not to think about it. I think he’s right. Distraction is a massive help as this way, one can process things in small chunks rather than be overwhelmed by a tidal wave of fear and despair.
It is heartening to read so many others seem to find a way of living and managing these conditions. Seriously impressive. These stories are so encouraging. Thank you for sharing them and keep them coming.
Dear @DanPoll
Welcome to the forum and it is so great you have found us here. I do hope you find this a supportive and helpful space.
Alongside the amazing Forum Support Volunteers and forum members, the Blood Cancer UK support services team are here to support you in any way you need. We also have our brilliant Clinical Trials Support Team too if you should ever need to talk.
We appreciate that it can take time to adjust to a diagnosis of Myeloma as it is a shock. I don’t want to bombard you with information so please just ask or visit our website so you can digest things at your own pace.
For now, our contact details are here Blood cancer information and support by phone and email | Blood Cancer UK
Take care
Gemma
I was diagnosed in 2017 at 49 with myeloma
I wanted to know everything so that I could make informed choices how the chemo worked why it worked what’s the next steps what do I need to do to move forward etc. my way of controlling my myeloma as it wasn’t going to control me
I wanted to know numbers so I could see how my myeloma was responding to treatment
I’m a single parent with two kids and they were my focus
Myeloma is very treatable even though it’s not cureable with new treatments becoming available all the time
It’s relapse remit so you will have times where myeloma isn’t active and times when it will be
Life is now very precious do all the things you wanted to do get that bucket list on the go and enjoy every precious day
Can I ask what treatment you are on
Do you know much about your myeloma
Hi @DanPoll a great big welcome to our forum and an ostrich approach is fine by me.
That is a great value of our forum you can join it and just dip in occasionally, read avidly or read and post, it’s up to you entirely.
I go into shock initially and freeze, but then put my faith in my medical team, usually…
However I do take my responsibility for my condition by making sure other medical specialisms are aware of it and also opticians, dentists etc.
I was diagnosed with another another blood cancer at 53yrs old and I am still here 19yrs later. I was the healthiest person ever for my first half century.
However I do get anxious before and during tests, results and appointments.
Just process it all in the best way that works for you.
Yep, full time work sure is a good distraction.
Thanks for having the courage to post.
You know where we are and how to post now.
Look after yourself and I hope to hear more about you.
Hi there 2DB. Thanks for your reply. I didn’t know Myeloma could respond to chemo. Maybe it depends on the type of Myeloma. I’m not on any treatment at the moment but I know mine is the most common type which is the light chain Ig G lambda M protein (I do know mine is at 20% and stable since March 2023). I imagine the episodes when your myeloma is active must instill real anxiety. I’m sure I’ll be the same. At this stage, it is difficult to predict how virulent (or not), it might be, but I appreciate you have lived with this since 2017. You must have felt particularly worried during lockdown. Well done, for getting through that in one piece. A compromised immune system would’ve compounded the fears of anyone with this disease. In time, I hope to learn as much about Myeloma as I can so I can learn to live with it as you do. Thank you for your encouragement.
Hi Erica. Thanks for your reply. It’s incredible you’ve lived with blood cancer for the past 19 years. Have you been through any treatments? Like you, I’m ok when I’m getting on with my life but feel a sense of foreboding when I have to have my three monthly blood test followed by the results. My next are due in November. More than anything, I find the whole concept of not being able to control this disease very difficult. Normally, there are things one can do to help one’s self- for instance, by eating certain foods and avoiding others or giving up alcohol (which I have though I barely drink anyway). All the consultant says is keep hydrated and maintain a healthy lifestyle (I already do). Is there anything you’ve found works for you in your experience?
Hi @DanPoll, no, I have not had any treatments and eat a fairly balanced diet with a few treats.
Over the years I have chosen not to drink, which like you, I barely did anyway. I suppose I eat less meat, but definitely drink more water.
I am a Pilates girl and believe in fresh air and reasonable excise, it’s walking for me.
Look after yourself
The treatment for myeloma is chemo with good results and some of us go on to have stem cell transplants.
Are you on watch and wait?
I’m IGGK light chain myeloma with boney disease
When I was first diagnosed it was a whirlwind I wasn’t in a good way and needed to respond to chemo to get to stem cell transplant stage
I didn’t respond to first chemo regime and my prognosis was 6months if I didn’t respond to the next chemo regime
I did and went on to transplant which gave me 5 years of a good partial remission
I have had counselling for anxiety and depression which was really helpful after admitting I needed help to make sense of what I had been through for around 16 months
I still have moments of both but they don’t define me.
I have always known that it’s a relapse cancer so I was aware of noticing symptoms and an avid number watcher from my monthly bloods.
I was off work for 18 months and returned middle of 2018 I was very careful where I went and would only go to a couple of coffee shops where they knew me and would be careful handling my takeaway cup.
I wouldn’t go to cinema or pubs etc as I was aware I was higher risk of catching the usual illnesses so I guess I was already prepared for when covid arrived.
I was shielding from work I work in retail and I went back once I had secured a safe working space with a fight I might add.
I relapsed at the time of the fuel crisis and I have been off work ever since as I cannot get them to make sure my work space is safe for me to return
To be honest I have found covid to be a blessing I’m out of the “rat race” I’m still shielding and I do my own personal risk assessment to keep me safe as I’m on maintenance chemo therapy until my next relapse
This is my last stem cell transplant and I will guard it with my life
I have a tiny close group of friends who are happy to sit outside my window and chat to me I make them tea and coffee and it’s on the window ledge when they arrive
We have all adapted well
My brother is amazing we now have a very close relationship he calls me daily
I love looking after my young adult kids
I keep fit via zoom
Yoga via zoom
Mindfulness via zoom
All meetings via zoom
I’m living my best life
so that I could make informed choices how the chemo worked why it worked what’s the next steps what do I need to do to move forward etc. my way of controlling my myeloma as it wasn’t going to control me