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Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Firstly, just wanted to say a big thank you to all of you who have posted here with your issues or worries and for the lovely supportive members that always give such sincere and positive replies.
I've read through many late at night, especially in the darkest moments and have always found answers to my queries and come away feeling more positive and reassured knowing that we aren't alone. I love the fact that there are so many, shall I say 'experienced' members that whatever the problem 'have been there, done that and still wearing the t-shirt!'
I just wanted to briefly share my husband's story as I know so many of you can relate to but also can give any advice or useful tips. Sadly (through first hand experience with other family members), I'm a bit of a sceptic when it comes to doctors and trusting them to always do the right thing. I feel I need to be armed with as much information as possible, knowing what to question, what to push for etc rather than be lead blindly down a path because it's the usual policy / cheapest option etc.
Unfortunately it's been such a roller-coaster of a ride these last 4 months, I'm struggling to get my head around all the medical terminology and fully understanding what it all means. The consultants so far have been great, but it feels like we have been given a diagnosis and the plan of attack but without being told of many details.
My husband is a young 61yr old with no medical problems to date. So, diagnosis 3 months ago for back pain and infections was a huge shock. Just started 3rd cycle of VTD which seems to be going ok. Main problem has been back issues. He has several fractures and vertebral collapses where the pain was excruciating. Copious amounts of morphine and a back brace have now helped this problem but it's been hell for him and he gets very low & upset. He's still trying to process the information,come to terms with this diagnosis and make sense of our life which has been completely turned upside down.
I received a copy letter today for our GP which outlines his results, which I wasn't really aware of. Looking around the forum, I can't really see any levels which are this high, which is why I wanted to share it to see what the 'wise' ones thought.
It stated initial paraprotein of 60 (although we were initially told it was 119). Now at 42 g/l
Free light chains have dropped from free kappa chains 4906 mg/L with a K/L ratio of 908 in October to 216 mg/L with a K/L ratio of 602
Bone Marrow 75% plasma cells
Creatinine: 100 umol/l
I find some of these confusing and I'm trying hard not to fixate on these figures as I know it's a long journey but have a feeling these aren't great and a mention of switching treatment if insufficient response was briefly mentioned. I know levels are reducing but still seem ridiculously high compared to others.
My main worry is that he won't be eligible for SCT - which seems to be the optimum goal.
Just wondering if anyone else was in this position with these high levels and if I am missing something that we should or could be doing to help?
Any thoughts would be really appreciated.
Thanks again for being such a great forum
from a very reluctant new member! x
DearPOLY100, 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.
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
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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
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.
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.
DearVal72 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.
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.
DearPOLY100 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.
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
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
That's really reassuring to hear - thank you!
I was feeling a bit despondent for him, if I'm honest. I thought his back issues would be an unfortunate side effect of the disease that would trouble him always. But one, we would have to learn to live with - as long as the myeloma was reducing it would be worth it.
The fact that yours seems like a distant memory (probably more like a living nightmare) is bloody fantastic!
I've just read your message to him and he smiled for the first time in ages. The day he can throw his brace in the bin will definitely be a day to celebrate!
Thanks so much for sharing your experience, it really does help knowing about a good outcome. It's so easy to get burdened down with the whole process then you read something positive and you're lifted again with hope and purpose.
I've realised that this initial phase (turmoil!) is so hard as your life turns completely on its head. You're bombarded with medical terminology, drugs coming out of your ears, hospital appointments practically every other day, horrendous pain, suffering, fractures, braces, scans, blood tests, no income................the list is endless!
I'm just starting to understand the 'long haul' part and am looking forward to making some headway and achieving some small successes. I know in time the numbers will come down, the pain will diminish, the brace will go in the bin and our lives will get back to some sort of normality. We just have to get through this 'bloody minefield' although I am under no illusion that there will be a few grenades thrown at us along the way!
Thanks again for your wise words and giving hope. I'm sure we will get there!
Take care & best wishes too
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