[aimeemelissaParticipant]

Hi everyone, not entirely sure where to start with this but I found out yesterday my mum has been diagnosed with myeloma at 52 years old. I’m 24 and have already lost my dad to other circumstances. I’m obviously thinking the worst when you hear a family member has been diagnosed with terminal cancer and we don’t know too much about it yet other than it’s treatable. I’m obviously too scared to ask the most obvious question, but I’m just wondering how long people have had their Myeloma for and how well their remission has been. I know it’s different for everyone but just a few different views and personal stories from everyone might help me a lot. Thanks for reading and I would love to hear from you all.

[shaun3Participant]

Hi Aimee,

I’m so sorry to hear of your Mum’s diagnosis. It must be a worrying time for your family. Not sure this will help but I do hope so. I too was diagnosed with Myeloma almost a year ago now aged 52. We have a large family (5 children and 5 grandchildren) so I might know something of the uncertainty you currently feel.

I’d start by saying tht probably like your mum, I didn’t know anything about myeloma when I was fist diagnosed and the best piece of advice I was given was to do my research through the myeloma uk and Macmillan websites. There’s a lot of rubbish out there about cancer so it’s important to get your information from a good source. As you learn more about myeloma you’ll soon learn that whilst there is currently no cure, there a many treatment options available which are proving more and more effective. If diagnosed early and treated by a myeloma specialist then your Mum’s chances of living with myeloma for a long time are better now than they’ve ever been. In fact, the are many specialists in the field that believe myeloma has already become a chronic condition rather than a terminal one.

But everybody’s myeloma journey is very individual. So far I’ve undergone induction treatment using two different combinations of chemo and I’m due for a stem cell transplant in the next few months. Tht should hopefully give me a longer period of remission (1-4 years) before it comes back and we need to deal with it again. During my treatment so far I’ve managed to continue living my life pretty much as normal. The chemo has affected me, made me tired at times and gave me swollen ankles, but nothing tht I can’t handle. I’ve worked throughout and we’ve been on a couple of holidays this year.

So I’m almost a year ahead of your Mum in my life as a Myeloma warrior and so far life’s been pretty much as usual. Tht might sound strange right now but once you get over the shock and natural reactions then things return to normal – well they have for me. Actually there are even some benefits to facing your own mortality a little earlier than expected. It’s amazing how I appreciate things tht I never gave a second thought to before.

Anyway, good luck to you and your Mum. Send8ng all positive thoughts your way and huge buckets of courage for your journey together.

Shaun

[aimeemelissaParticipant]

Hi Shaun and Mike, thank you for taking your time to read and reply, I definitely think the more I research and know about it the better I will feel. I suppose it’s just coming to terms with it. I just feel so sorry for my mum as she’s been in chronic pain for at least a year now and it’s only going to get worse before it can possibly get better, and I just feel it’s going to hit me like a tonne of bricks when all I want to do is be strong for her. I’m worried all she’s going to do is worry about us kids and not herself when she doesn’t need the added stress. All I’ve done since i found out is cry and I feel I’m not being as strong as she needs me to be right now.

[shaun3Participant]

Morning Aimee,

I’m sure tht your emotions and concerns are all very normal right now. I cried like a baby the first week after diagnosis but tht’s just part of the grief process, it passes and eventually you come to accept the situation and move forwards.

I also think your worry tht your mum will be more concerned about her children than herself is probably right too. I certainly am more concerned about leaving my family than I am about what will happen to me. But I wouldn’t look on it as a negative. My desire to continue living a happy life with my family is very strong and it drives me to never let this disease beat me. So the important thing is to help your mum channel tht emotion into a positive.

Sorry to sound all paternal here by the way. Sorry too tht your mum has been in pain for a while but the good news is that you now know why. And there are so many options available now to treat myeloma so you can now work with your mum’s consultants to regain her quality of life and long term treatment.

Stay strong but let the natural emotions flow.

Shaun

[aimeemelissaParticipant]

Thanks Shaun, she starts her radiotherapy tomorrow but she’s not feeling too well today, she thinks it might be the morphine, hate seeing her in pain.

[paulapurpleParticipant]

Hiya,

I was 57 when I was diagnosed and my daughter the same age as you. I know she really worried, especially as I had a double cancer diagnosis of both Myeloma and Non Hodgkin’s Lymphoma. It’s scary at first but you learn to live with it. My journey started with radiotherapy too followed by chemo. I’ve had four separate and different sets of chemo as nothing was working; don’t panic as this is unusual! Most people respond to their initial induction treatment, usually Velcade, Thalidomide and Dex (VTD), which they have for six months and then they move on to stem cell harvesting and a stem cell transplant. The information on this site is excellent and will help you to understanding the complex nature of this condition; there is an info guide on VTD and the Info pack for newly diagnosed patients is really good. Being well informed takes some of the worry away I find. It has taken me two years to get to stem cell transplant (I’m currently expecting a call to go in at any moment), longer than most but I am hoping it will give me a period of remission where life can return to more or less normal. Please don’t think of this condition as terminal, it isn’t as it’s treatable and there are many people who have lived a very long time since diagnosis. Treatments are improving all the time and new ones are being discovered; there have been big strides forward in the last 15 years and this is set to continue.

You may find it useful to join the UK Myeloma Support Group Facecbook page if you haven’t already; it’s open to both carers and patients. I have found it useful; there are many knowledgeable and experienced people on there who will answer any questions you may have quickly.

Paula

[artemis20Participant]

Hi Aimee,
I’m so sorry to hear your mum has been diagnosed with Myeloma, it’s currently an incurable cancer but can be successfully treated. You really need to keep this in mind.
I was diagnosed in 2002 and have been in remission since my stem cell transplant in 2003 and I know of another patient who was diagnosed in 1992 and still in remission.
No two patients are the same, it’s such a complex illness but positivity plays an important part.
I hope that by hearing of people who’ve had Myeloma a long time will give you some hope.

Best Wishes.

[Anonymous]

Hi Aimee, I have only just joined the forum and read your post and was wondering how things are progressing with your mums treatment. I am 9 months on from diagnosis and am in plateau and off all treatment so I understand what your mum is facing and just wanted to lend you my support.
Best wishes
Cassidy.

[aimeemelissaParticipant]

Hi everyone, I’m sorry I haven’t really been posting much recently. My mum is feeling pretty well at the moment. She’s just about finishing her first cycle of chemotherapy. She’s just started the second week of the break at the end of each cycle. She’s been toing and frowing with her anti sickness tablets but after making changes she’s realised it was the oramorph that was making her ill so she has stopped taking that now. Other than that her pain seems to be pretty much under control unless she is on her feet too much. Will keep everyone posted and thank you everyone for you help and your stories x

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