Levels very high?!

Dear, the first thing I’d like to say is there are no two myeloma patients the same, myeloma isn’t really a single disease but has distinct characteristics in every person. This means that not everyone will respond the same way to specific treatments and changes of therapy are not unusual. I wouldn’t really focus on test results too much, as they are really just a window into that particular blood test and things can change from cycle to cycle. Haematologists are more scientists than traditional doctors as it’s such a complicated specialty and very data driven, so as lay people we always find it difficult to decipher anything useful from test results. As far as having a transplant is concerned, in my experience the doctors like to get you as close to remission as they can but will still go ahead if you plateau at a low enough level. The criteria is not age based as such but more about the general fragility of the patient and any other relevant diseases they may have. I’m sorry to hear your husband has experienced so much bone involvement, it’s very hard dealing with a life changing diagnosis and being in such pain and then having to deal with treatment especially the dexamethasone which can play havoc with your mood and sleep. The most important thing moving forward is never suffer in silence, raise issues as and when they arise and make your clinic nurses your friends, they are a good way of accessing the consultant outside of reviews. Having myeloma is no walk in the park for the patient or their families but research into drugs is at a all time high so there is lots of hope for the newly diagnosed, but we all have to learn to live with uncertainty and how you do this will determine the quality of life you have, so I would encourage your husband to ask for psychological support if he is struggling as myeloma is as much a emotional challenge as a physical one.

Hi Poly,

Welcome to the forum, although I am very sorry about the circumstances.

I am by no means a medical expert, so please take everything I write with a pinch of salt. I just want to reassure you that my kappa light chains were in the thousands on diagnosis (I can’t remember the exact number, but it was big), and the movement your husband has experienced in three cycles is a good one, I would definitely take some positives from that. I can see that there is still work to do, but I think I am right in saying the medical teams will go for up to 10 cycles before they move to other treatments, so there is definitely still quite a lot of time for VTD to continue to do what we want it to do.

As Johnty says, there are lots of different treatments out there for myeloma, with new ones developing all the time, so there are many reasons to be hopeful. But I understand how your husband is feeling too - a diagnosis of myeloma is a terrible thing to have to go through, and in my experience, it takes a long time to process. I think sometimes all you can do is keep plugging away, one step at a time, until you get to where you want to be.

Please keep us updated as to how you’re getting along, and please use this space whenever you need it, for whatever purpose. You wrote some very kind words about the forum and its members, which I know many, including myself, greatly appreciated. I really hope you will continue to find good support here through what is a very difficult time.

All the best

Greg

Thank you Johnty.  This all makes sense and you're right, he does need some psychological support which I will try and arrange asap. 

It's so tough for everyone but it's good to hear from others like yourself with more experience and knowledge to 'normalise' these worries as it's all part of the journey.

Interestingly when you mention dexamethasone as I've read before what a nightmare it can be but weirdly enough we look forward to the two days of taking them.  He gets so much more relief from his symptoms -  the pain is better, he has more energy, can move around with ease and has a better appetite.  As you say, no two patients are the same.  Maybe this will change in time but for now we love it and wish he could have more!

Thanks again for your wise words and I will stay hopeful 

x

Hi Greg,

Thank you too for your kind and wise reply.  I know you've been there so can see/share the light at the end of the tunnel.  That really does help.

Yes, there are lots of positives you're right and we will keep staying hopeful on this journey which I'm sure will have plenty of more twists and turns along the way.

I'm sure I'll be on here plenty so look forward to picking your brain again!

Many thanks again.

x

Hi Poly100

I had several fractured ribs and three fractured vertebrae, so was on quite high morphine for a while (GP prescribed).  My light chains were over 8000 and paraproteins 28 initially

I opted not to have the SCT as I was wary about the very high levels of chemo, and managed 18 months of total remission, with a good quality of life after the initial 7 months of velcade.  I had to come off the thalidomide after 4 weeks as I had a very bad reaction to it. A few months into remission, I had a vertebroplasty on one of the vertebrae (2 had compressed too much to insert any bone cement) and the pain has been considerably better since.  No morphine, though I still take paracetamol most days and also use some local anaesthetic patches prescribed by the GP.

Unfortunately I relapsed earlier in 2019 and was put onto lenalidomide and dex, but had increasing problems with side effects (exhaustion,very flaky skin, loss of appetite and loss of muscle tone) so was given several weeks off over the holiday period and will be starting a new regime shortly.

As other people have said, Myeloma is a very individual disease. I hope your husband responds well and remember that new drugs have evolved over the past few years and will continue to do so.  Good luck.

Dear I’m sorry to read of your very up and down experiences with your myeloma. I have primary plasma cell leukemia which is a very rare form of myeloma. I’m currently taking revlimid and high dose dexamethasone, I didn’t get a transplant either due to kidney problems. Myeloma is a hard thing to get your head around as you can’t predict the future, but for the newly diagnosed there’s much to be hopeful about.

Hi Val72.

Thanks for the reply.  Sounds like you've been through a lot & I'm sorry to hear of your relapse.  

You're right,  this disease is different for everyone, as I'm slowly starting to learn.  I also don't feel so worried if the SCT isn't an option.  I'm glad you had 18 good months- just sorry it wasn't longer. Fingers crossed for the new regime you'll be starting soon! 

My husband also has the exhaustion, very flaky skin, loss of appetite, loss of muscle tone (due to weight loss and lack of activity due to pain/back fractures etc).  They've said this is normal and to carry on. The only thing we've changed is cutting back on the Thalidomide.  The 200mg made him feel really unwell so we went back to 100mg which he is tolerating well so far.

It's so hard, as not only does every Myeloma patient experience treatment differently, many of the medical staff we've spoken to give us different advice?!

This Myeloma is a bloody minefield! 

Wishing you well on the new regime Val72.  Please post again so I know how it's going.

Many thanks

Dear you mention your husband problems with exercise due to pain and side effects. I have got round this problem by buying myself a walker with a seat, so when I go out I can always sit down if i get too fatigued and it gives me stability and encourages members of the public to make a path for me. I can now take a daily walk at my local nature reserve and go shopping and haven’t needed my wheelchair in months and it’s given me a sense of freedom. Your right about myeloma being a minefield, it’s not really one disease but a series of diseases which several separate categories. The good news is that in the USA there are about seven new drugs waiting for approval to treat myeloma and will eventually be available in the uk. The drug companies have become very interested in myeloma due to the ageing population and there’s money to be made as these drugs are not cheap.

Hi Johnty,

That's a great idea.  I think he might need some persuading though...... but definitely worth a try!

Sounds like it's given you a new lease of life and wow, being able to walk everyday to a nature reserve must be wonderful.

A chance to get some peace and make sense of all this Myeloma madness.  I hope it brings you joy - and probably lots of contemplation?  

Many thanks for your suggestion.  I'm going to get my hands on one and see how we go.

Best wishes & take care

x

Hi 

Just thought I would send you and your husband my best wishes as you navigate your way through this bloody minefield as you so rightly describe it!

I'm sorry to hear he's in pain and I hope that begins to resolve soon. I found the pain in my back and ribs did get better quite quickly once I started on the VTD.

I too had to wear a back brace for four months. At the time it felt like the final straw and at times I thought I couldn't stand it anymore. I was incredibly miserable and in low spirits but it worked! Do you know I have almost forgotten  all about it now and at my last appointment at Stanmore they were very pleased to see new bridging bone is growing which will help to strengthen my back where the vertebra had collapsed. They dont need to see me anymore! It was a great day when I threw that bloody brace into the dustbin!

It's a long haul but you will get there. I think it's very hard for the carer and for the wider family to have to deal with all this day by day week by week but things do get better as time goes on.

I wish you all the best with the treatment 

Suex