[bumblelionParticipant]

Hello

I tried to post before but is seems to have gone awol..not sure what occurred so please forgive me if my previous post is lurking somewhere..

My hubby was diagnosed with Myeloma last week. He is 59 and has had bilateral hip replacements one at age 50 and the other at age 53

He had decompression surgery age 54. So 3 major ops in 4 years.
Now he is 59 and had had a bone marrow biopsy to confirm Myeloma.

Full body scan this week. Awaiting results as to whether he will need treatment or not.

What an interesting time…

Any advise would be appreciated.

[kevinParticipant]

Hello
Sorry to hear you news but you have found a very helpful and supportive site. I think the main thing to take on board is that at present it may not be curable but is certainly treatable. Its been a while now since diagnosis (2006) but I remember there was a lot to take in and comprehend before settling down into the routine of treatment. An individual disease and also treatments can vary depending on general health, fitness and the treatment your Consultant decides on. I would say to ask your consultant/team any questions you have and possibly writing them down as they occur to you and have someone with you to help remember what is said. Best wishes
Kevin

[kh0305Moderator]

Hi Bumblelion,
Sorry to hear of your husband’s diagnosis and all the ops he has had to endure over the last few years. It must feel like a lot to cop with for you.

I’m one of the forum volunteers and my experience of MM is from my dad who was diagnosed with it back in 2013.

I fully appreciate how overwhelming and scary it is to hear your loved one has cancer and, if like me, one you’ve not heard of! The good news is, as Kevin says, that it is very treatable. The initial few months will likely be a bit tough, the fatigue in particular was hard for dad to cope with, but once he was through his stem cell transplant he improved a little bit every day and by 18 months after first diagnosis was back to leading a normal life.

As Kevin says, ask as many questions of your husband’s consulting team as you need and make lots of notes as there are a lot of new terms to get to grips with and never be afraid to push back if something is worrying you. You can also speak to the infoline on 0800 980 3332 if you have any other questions you need advice on and you have all of us here on the forum to support you through with our own experiences.

I hope that the treatment plan kicks off soon and that your husband is soon feeling better.

Good luck with it all x

[mulberryParticipant]

Hi Bumblelion, welcome to the forum.
When I was diagnosed 4 years ago at a similar age to your husband, I was very afraid that I was on a downhill slope health-wise, and that I wouldn’t reach my pension.
I devoted a year to treatment, having a stem cell transplant 10 months after diagnosis, but since then have been in good, stable, health- actually better than before when I knew nothing of my myeloma. No one would know anything is wrong, and to be honest at the moment, not alot is. This is so far from my initial expectations!
Your husband is considered one of the ‘young ones’ in the myeloma world, and the statistics that you may have read about, don’t really apply. (Google is often very out of date) There are new treatments being approved regularly, and although myeloma is still incurable, it is for some a chronic, treatable disease, and in time more of us are likely to experience this. The leaders of my local support group have lived with myeloma for 17 & 18 years respectively, and although this isn’t the experience of everyone it’s important to retain hope.
Myeloma UK is a brilliant charity, providing us with excellent (award winning) publications, an available listening ear in various forms, nurse led information and effective advocacy on our behalf with NHS & govt.
As you are finding, the diagnostic process is quite long winded as the disease isn’t called “multiple” myeloma without reason. There are different subtypes of myeloma, involvement of different immunoglobulins and light chains (or neither), each can be associated with a range of chromosomal abnormalities, some of which are more problematic than others. Myeloma can affect different organs, to different extents, and can be identified at different levels of damage.
Once diagnosis is confirmed (which can be a while after you “know” because one test has been positive), a decision is made about whether a patients general health means they are likely to manage an intensive 4 drug treatment protocol followed by stem cell transplant. Otherwise patients embark on a 2 drug regime, but the majority of us under 65 or 70 head towards stem cell transplants. Myeloma induction treatment is time consuming, and most people have some side effects, but it is much less harsh than old chemotherapies. Although we patients tend to refer to treatment as ‘chemo’, really we are being given much more targeted drugs ( except for stem cell transplant itself).
At the moment your world probably feels turned upside down (again) but I hope that you get some answers, & some control back over your lives, soon.

[bumblelionParticipant]

Thank you both for your replies. He has officially been diagnosed with Myeloma from
The bone marrow biopsy and the MRI full body scan will show the extent of impact to bones (if any..) and that will determine treatment plan I guess.

Yes it’s really a shock but we are waiting for the appointment to discuss the plan. This is the worst bit I think 😞

It’s good to hear that others, after having treatment are feeling a lot better.

Hubby is very much thinking all is fine and he won’t need treatment.
I’m preparing my head that it may be otherwise.

Thank you for being supportive and I will no doubt be asking alot more questions going forward.

Thank you

[lilibParticipant]

<<Hubby is very much thinking all is fine and he won’t need treatment.
I’m preparing my head that it may be otherwise.>>

That very much sounds like our scenario. My husband has been totally optimistic all along, but has not wanted to read any of the information about possible treatments. I have accepted that role, and have filtered through bits and pieces when I felt it was on a ‘need to know’ basis!

I think his optimism and total faith in the medical staff has been a real blessing. He has been having induction treatment for almost a year, and we are waiting for a date for him to go into hospital and get his cleaned up stem cells back. If I’d known then what I know now, it would have been a less scary 12 months. Honestly.

Hope it is not too long before you get a treatment plan. All best wishes to you both.

[kevinParticipant]

Hello lilib

I have taken a similar view to your husband. I was diagnosed back in 2006. I still know very little about myeloma with the only thing I look at are the paraprotein level. I have always had complete faith in my consultant and he continues to do a great job for me. My view is that it may not be curable but is certainly treatable. There have been many new treatments since my diagnosis. I am very confident that I will grow very old very disgracefully.
Best wishes
Kevin

[kenbParticipant]

Great to read some of the comments on here – I am 51 and just diagnosed although likely had it a while. I was having physio for a groin strain for over a year before sarcoma was looked into in March – what with bank holidays and results turnaround, that was only discounted recently and here I am.

I’m fit and healthy and the biggest issue currently is where the main part sits – top of my femur) so is stopping me exercise as they do t want fracture to treat too.

Just want to get in with treatment as I cancelled 2 holidays (august and November) yesterday on advice of my consultant and want to rebook!!!

[richfsModerator]

Hi bumblelion,

Myeloma UK have recently trained some peer-volunteers to assist on this forum, I am one such person.

Sorry to hear about your hubby’s diagnosis and previous health problems. Well done for caring for him – it’s difficult for you (my wife would agree), so do reach out to us on this forum and the Myeloma UK Infoline.

Just to add a voice of hope – I was diagnosed with myeloma in 2019 and had VTD treatment followed by a Stem Cell Transplant (SCT). During that period I suffered bone pain and compression fractures in 3 vertebrae, it was taking me 40 minutes to get out of bed and I could barely walk across the room. I have since returned to normal and active life (don’t mention the pandemic!) Last week I cycled a total of 90 miles and swam in the sea most days, so the damage to the bones that myeloma causes can certainly be sorted out by the treatment and the body’s amazing ability to heal itself.

Best wishes and do give us a short for any advice or support, the treatment is bearable and effective, keep your spirits up,
Rich 👍

[bumblelionParticipant]

Hello

We have seen the letter from the consultant to the GP saying hubby has Asymptomatic Myeloma and it looks like no treatment will be needed.

So that’s good isn’t it?

[kh0305Moderator]

Good to hear that no treatment is needed and no damage! That must be a relief for you both. Your consultant will want to monitor your husband as there is always a chance that it may develop into symptomatic myeloma in the future but it doesn’t always happen so keep positive and keep up with the check ups and report anything to them that doesn’t feel right/changes just to make sure all is ok. I hope he remains symptom free for many many years to come xx

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