I just wanted to introduce myself, my name is Kerry and on Wednesday 29th December I was given the news that I have Multiple Myeloma
I am really up and down at the moment I am trying to put on a brave face all the time and today i just don’t seem to be able to keep it up.
I am due to get married on 9th April but we are going to try to bring the wedding forward as we do not want treatment to interfere with it.
I’m so confused by everything at the moment, I knew I was tired and that i ached a lot but i just put it down to going to the gym, never did I think that I would have MM.
All of the research and information i have read says that MM is usually found in people over 60 and I just can’t wrap my head around it.
Any advise to a newbie? I feel like my world has been turned upside down
Hi @Fighting_MM. I’m so sorry that you have found yourself here but I can promise everybody on here will be a great support and understand what you are going through.
I was diagnosed with a different blood cancer 5 years ago (age 41) , one also more common in over 60s. What I can tell you is that whatever our age of diagnosis, we all understand how you are feeling now.
I was a lot like you and tried to hold it together. In the end it really is impossible and just builds up. That’s why I’m glad you have opened up today.
It’s so much to take in and your emotions must be all over the place, especially as I can imagine all you had on your mind was your wedding in 2022.
There will be others on the forum who may be able to share their experiences more specifically around myeloma but for now I would say take each day at a time. Go with your emotions. You’re allowed to feel whatever one that is - sad, angry, tearful. There is no right or wrong. Listen to your body and be kind to yourself. You don’t have to be strong all of the time.
The support line is here for you and your friends and family. It’s not for everybody but sometimes it helps to talk things through. I wish I’d contacted them earlier, as well as my counsellor. Here is the link:
Write down every question you have ready for your next appointment, however silly you may think it is. I had so many questions that I didn’t ask at diagnosis but made sure I did at the next appointment, taking my husband with me because I’m wasn’t sure I would take it all in.
Try not to Google to much and use reputable websites. I spent hours doing this thinking I would find something new on each website and in each article, but most of what I needed was on here. I hope the hospital gave you some information? You have probably already read the info on myeloma on here. Here is the information just in case .
When is your next appointment? Have you been given contact details of somebody to call if you have questions.
As I read the line of ‘feeling like your world has been turned upside down’ I feel that feeling in my tummy and go right back there. This part is so hard and often has a lot of waiting around which is when my brain goes into overdrive.
Please please keep sharing. This is when you need support around you and the forum members and the support line will be here every step of the way.
Sorry if I’ve rambled and overloaded you. Just take from it the bits that are helpful.
Sending lots and lots of love x
@Fighting_MM I don’t know how to follow @Nichola75 reply, it could have been me talking to you.
As I read your post I was so surprised with how you appeared to be keeping it together, you haven’t got to keep it together with us and as @Nichola75 says those shock yukky feelings came straight back to me as I read your post that I got when I was diagnosed 18 yrs ago, I immediately felt in a bubble with the world going on as before around me.
Being diagnosed on the 29 Dec probably means you are in limbo a bit with bank holidays and Christmas decorations everywhere.
However on the plus side it gives you a chance to take it all in and as @Nichola75 says to write down every question you would like to ask at your next appointment.
You say that you have your wedding coming up so you might want to ask questions around your wedding and even about fertility issues, if appropriate, etc.
As I said I was diagnosed with a different blood cancer 18 yrs ago and I immediately came home after I was diagnosed and wrote my will and funeral music. I manage the symptoms I was diagnosed with.
Advise for a newbie is to go with your emotions, take the mask off, it is natural to feel your world has been turned upside down, keep talking with your partner who is probably also in shock and has similar thoughts, feelings, questions and practicalities etc.
Be kind to yourselves and spoil yourselves. Perhaps keep away from Google there is a lot of confusing information out there.
Please keep posting as I look forward to hearing more about you and how you are doing.
Oh I’m so sorry about your diagnosis, you must be going through agonies right now. I was diagnosed with a different blood cancer in 2020, and I unfortunately vividly remember that post-diagnosis few weeks, when just the thought of the name of the disease seems like a nightmare. I also tried to hold it together (particularly for my son) but the sobs did come once I was alone in hospital. It actually made me feel a tiny bit better to cry and let out some of the terrible stress. It IS so enormously stressful.
I can’t help you with the myeloma side of things, and @Nichola75 has signposted you to lots of helpful info here. All I can do is say we’re here for you. Your emotions will get steadier with time. If you can, allow yourself to feel whatever you are feeling - it helps those feelings to pass for the time being.
The only practical tip I have is that I listened to guided meditations on YouTube immediately post-diagnosis (and through treatment.). They helped me enormously to steady my emotional self, because I’d felt like my psyche might shatter, I was that emotionally distressed. They got me into a good place, to the point of feeling very positive and determined. If that appeals to you, go to YouTube and search for ‘guided meditations for wellness/cancer/health’ etc. There are many, and if you listen to the beginning, you get an idea if you’d like the therapist and their approach, and whether their mediation would help relax and support you.
We’re here for you.
All the best
Fullofbeans X X
Hi @Fighting_MM , Kerry I’m so sorry that you have had an mm diagnosis. I was diagnosed in Oct 2020 with mm and remember vividly how my life changed that day. Many tears and the shock of the diagnosis was very hard to deal with. It turned my life upside down but after 8 months of treatment and a stem cell transplant in August of 2021 I have no more myeloma in my bone marrow and hope that remission will be for many years. I know that if the myeloma returns they have my stem cells frozen so that a second transplant can be carried out if necessary.
Currently the disease can’t be cured but it is very treatable and you can feel well for long periods of time. New treatments are being developed all the time and hopefully mm will become a chronic but controllable disease in the not too distant future. The details regarding mm are very negative on Google, stick to this forum where you will get lots of support from people who will understand how you feel. I also found an American site by Healthtree , the Myeloma Crowd who are very positive about the future for myeloma sufferers. My advice would be not to read general info on Google regarding mm as most of it is outdated and there are excellent treatments which really control the disease for many years. Remember that the longer treatment keeps you well the more research and treatments become available. Car T therapy is looking very promising so this may keep the disease under control permanently in the future.
It’s ok not to feel ok and it will take time to deal with the shock and to process the huge upheaval that the diagnosis brings. Just remember there is light at the end of the tunnel and you are not alone. Sending many virtual hugs and love to you xx
Hi @Lyn99. Such a useful post that will help @Fighting_MM so much.
It’s great that your treatment has been so successful. It must have been a tough journey for you x
Hi @Fighting_MM. I’ve been thinking about you, when you feel ready let us know how you are doing. No pressure, just letting you know we are thinking about you X
So sorry to hear that you also have been diagnosed with MM.
One thing I have found is that no two people with MM are the same . It’s good to share accounts but your own individual case will differ so try not to get overwhelmed with all the different experiences . My GP trained in haemotology many years ago and she was comforting when she said they have made massive advancements in the last 30 years - prognosis and treatment being so much better than before. NICE have just recommended a new treatment for MM which has shown some good results and I am on this program for 18mths having been diagnosed March 2021.
I think my MM may have been there much earlier but just diagnosed . But 60 plus seems to be the mean age in the information I have read. I turned 60 last year. The plus is you are young enough to withstand any rigorous treatment necessary . There are different levels of treatment including stem cell .
I have found my specialist nurses very helpful and supportive and you are entitled to see your blood results . It’s the ‘light chains’ that you will need information about , it will tell you how active the white blood cells are and how treatment is going . See yourself as part of the health team and don’t be scared to ask questions or to put your points across.
I think the most difficult thing is having a cancer diagnosis during a pandemic such as Covid - it just complicates everything and increases our vulnerabilities. Your bones become very fragile with MM, so take care with lifting.
I take one day at a time and these online forums have been a blessing.
Some great advice there @Mayo57. Diagnosis during a pandemic must be pretty scary. Thank goodness for these forums. Sometimes a real life saver!
@Mayo57 , I can’t believe you’re 60 that’s impossible!!
Can you tell us more about the new treatment you are on for mm it sounds interesting. It’s over quite a long time period too. Thanks x
Thankyou @Lyn99 ….it’s divine grace and joy that keeps me looking much younger (I’m a Christian) I believe although I do also have my flat days but I try to look beyond the current circumstances and look up . This morning I was dancing in the hall despite all the pains and cold feet symptoms.
The medication I am on is as follows : Aciclovir , cotrixomole , blood thinner tablets (eliquin), fentanyl patches for pain, omepraxole , the thalidomide tablet (lenalidomine it’s called).
During my 2X weekly treatment (I’m on first cycle) I have 10 minute infusion chemo which is made up of Carfilzomib and dextramethasone plus 2 lots of saline for an hour each. I start 2nd cycle next week but not before a review with my consultants on Tuesday . I’m still waiting to hear how the light chains are doing since start of new treatment.
I had nausea after the first infusion but I’ve settled well. I get very tired though and sleep disturbed after the dextramethazone. I can’t concentrate on anything too much and I flit a lot.
The maximum they will run this treatment is 18mths . It maybe if I fare well it will end earlier(?)- I don’t know. It will be a question I will ask.
Thank you for your messages it is great to know there is so much support out there.
I am plodding along, we have brought our wedding forward to the 25th Feb so that’s really exciting we are having a very small family day and I get to go wedding dress shopping tomorrow.
As for the Myeloma, I feel exhausted, but still trying to keep life as normal as possible, I have always been one for tattoos so when I saw a few weeks ago that my tattooist is having a cancer charity day on Sunday I knew I had to be involved, he did my Myeloma Ribbon on Wednesday which I am so chuffed with I said from the beginning if I was diagnosed I would have my ribbon.
The main event is on Sunday and I have managed to get our local newspaper to attend to report on it and they have asked if I would do an interview so I am due to call them today, just the fact that even if I can raise a little awareness just makes me feel a little better.
Yesterday was hard, I had flowers delivered from a friend of my other half which made me cry and then had a call with the critical illness insurance which was a really hard call to make, also had Macmillan call
I genuinely can’t keep track of the days. xxx
There is so much to sort out isn’t there. I remember the call to the critical illness. team. I hated all off the questions and then when I got the insurance through I was both pleased and a bit terrified as I realised that this lymphoma was pretty serious. Such up and down emotions, with the nice gestures as the flowers!
Wedding dress shopping - whoop whoop! That’s really exciting. I hope you find what you are looking for, keep us updated and make sure you share the article once it is published.
Sending lots of extra special wishes your way x
Dear @Fighting_MM, welcome to our Forum and I’m glad you have been welcomed warmly by our amazing members, their advice in invaluable. I am so sorry to hear of your diagnosis and can only imagine how shocked you are. From your posts it sounds like you are making so many positive steps which is fantastic. I do hope the wedding dress shopping was fun for you? Do you have enough written information regarding Myeloma and potential treatments at this point? If not please do contact us and we can send any through that may help. The support services team are also here if you would like to talk things through, so please do not hesitate to contact us Blood cancer information and support by phone and email | Blood Cancer UK. Kind regards Gemma
Oh @Fighting_MM it’s all going on for you isn’t it.
Where is your Myeloma Ribbon tat and I would love to hear about your other tat’s.
Oh, wedding dress shopping tomorrow are you taking someone with you or are you better on your own, I expect a complete description of the dress you choose.
What a wonderful idea of your tattooist to have a charity cancer day and good for you doing an interview for your local paper, it is so vital to get awareness of all blood cancers and also the Blood Cancer UK charity, for information and support, but also how they invest in so much research and clinical trials.
I am exhausted by just reading your post, you seem to me to be doing so much more than plodding along.
Be kind to yourself and you don’t want to wear yourself before Feb 25th.
I guess I am doing a little more than just plodding along…
I’m going with my mum and best friend tomorrow for a dress it’s going to be very strange as I already own my dream dress but that is being kept for our bow renew when I have beaten this thing.
My ribbon is on my wrist so I can see it every day as a reminder of my journey to come.
Tattoo wise I have my ankle done with butterflies I have the base of my back with Lilly’s and I’d just started a full leg tattoo if the original Alice In Wonderland sketch work however that’s on hold until after treatment xx
I’ll be thinking of you tomorrow. Can’t wait to hear what you find x
Oh @Fighting_MM that sounds the perfect duo to take with you to choose your dress.
I hope you find another dream dress.
Your tattoos sound so lovely and Alice in Wonderland sound a long term project.
Thanks for the info @Mayo57 sounds like quite a list of medication. I’m just about to start lenalidomide for maintenance so joining you on that one. Dexamethasone really disturbs you sleep but a necessary part of the treatment. Hope all goes well and you don’t suffer too many side effects from the treatment. Keep dancing and singing, love your positive attitude. Xx
Hi @Fighting_MM . I was diagnosed with Multiple Myeloma 4 years ago and like you was very bewildered and wasn’t sure how to react. I knew that I should have lots of questions but didn’t know which questions to ask and I didn’t get much guidance from my medical team who just dumped a couple of leaflets on me and left me to it. I didn’t know that there were support mechanisms in place like this forum and apart from some well-meaning sympathy from family and friends (none of whom lived near me), I was completely alone. I think that you’re ahead of the game therefore in having already sought out useful sources of information and found appropriate people to talk to about how you feel. If I had my time again, that’s what I’d do. Hopefully some of the information you’ve uncovered will give you some answers or at least point you in the right direction of where to find them and know the right questions to ask. You’re quite right that the average age of a Myeloma sufferer is over 60 and probably nearer 70. I was 49 when I was diagnosed. I try to look at it from a positive view in that we’ve got age on our side and are probably more able to fight it than the average sufferer. You’re right to not abandon your future plans but to weave them into what’s going in. It’s things like this that enable you to feel more in control. I was forced to cancel some extensive travel pans back in 2018, not directly because of the Myeloma but because my diagnosis was so late that it caused a fracture in my back and I couldn’t walk or believe me I’d have been on that plane! I rescheduled that trip for…2020…and guess what happened then! It sounds at any rate that you’ve got lots of support and lots of positives too so I’m sure you’ll be fine. The first line of treatment isn’t that terrible.