Dear Jill and all,
So sorry to bring bad news to the forum but I wanted to let you all know that my 77 year old Mum passed away last week, after a brave 6.5 year battle with myeloma. I think, for her it was too late for the pomolidamide as she was deteriorating fast. I cannot say enough praise about the care my Mum received on the NHS, both in regard to treatment and nursing care; I don’t think she could have had any better treatment elsewhere (she lived in N E Lincs). The end was very peaceful.
Jill I hope your Mum continues to do well with her treatment. I would also like to pass my best wishes to everyone else on the forum who are either experiencing the disease, or supporting or caring for someone with myeloma. I will continue to support Myeloma UK and follow new research on the disease with great interest.
Best wishes, Julie.
Hi Jill
Thanks for the update and I am really pleased to hear your Mum is doing well on CDT again.
We have had a very challenging few weeks with my Mum (aged 77 now and going into her 7th year with the disease). The Velcade was not working and giving her nasty side-effects. She’s in hospital again at the moment and they have very recently put her on Pomalidamide and dexamethasone. I was very surprised about this due to the new-ness of he drug and the fact that it’s not generally available yet, but apparently the Cancer Drugs Fund is paying (good old NHS!). She had quite bad side effects with both Thalidomide and Revlimid, but I guess they are running out of options. This disease is a marathon and not a sprint that’s for sure. We plod on and hope for the best.
Regards, Julie.
Hello Graham and Laura
Thank you for your responses.
Graham – sorry to hear about your kidney cancer, wonderful that you managed to beat that. I hope you also will not need treatment for the myeloma any time soon.
I know what you mean about screening tests that may blight people’s lives but an alternative philosophy may be that knowledge is power and someone affected may want to live life differently (i.e. less work, more play) if they are aware that there may be a real possibility of symptoms/treatment in the future. I think for some people it could also take away the risk of early bone damage/renal problems if they are being monitored regularly whereas it seems that some people (like my Mum) present later in the disease already having sustained physical damage. It’s a very grey area I think.
Laura – very sorry to hear about your diagnosis and glad to hear your SCT went well (read your other thread). I was not aware that there are routine blood tests for paraproteins – only things like full blood count, ESR and C-reactive protein (?). I was also at a Myeloma Infoday recently and I thought they said that only 2-3% of people with MGUS go on to develop myeloma but I may be mistaken. I know what you mean though – since my Mum was diagnosed I’ve met/heard of a few people who are affected by the disease in one way or another.
Best wishes x
Hello again and thank you so much for all your most helpful responses. It would seem then that some sort of crisis precedes testing for myeloma/smouldering myeloma/MGUS in the majority of cases; and I also note other people in the forum who say they were diagnosed from “routine” blood tests – although I was not aware that the NHS carries these out. Perhaps some GPs are just more zealous than others (?)
Jane – sorry to hear about your pneumonia, I hope you are feeling much better now and I’m glad that you have had good care and are being closely monitored.
John – really sorry to hear that your smouldering myeloma has turned in to full scale myeloma; best of luck with your treatment and SCT if you and your consultant decide to go for that.
Mike – thank you for the information on the blood tests. From what you have said I guess you are at the smouldering myeloma stage – and I hope you stay well and smouldering only. I think it would make sense for people to have routine bloods when people get into their 50s and 60s for MGUS, but I guess there just isn’t enough money available in the NHS for this.
Jill – good that they picked up on your Mum’s illness early. My Mum had a bad experience where she was unwell for a year or so but her GP did not recognise the symptoms. By the time she had a blood test she had lost about 2.5 stones in weight and was severely anaemic (!).
Thank you again everyone and all the best xx
Hello again
Eve – I know what you mean about enjoying every day but my Mum has been too ill to enjoy life at all over the last few weeks. I wish your hubby well with his CDV and I hope he is doing well on the treatment.
Jill -thanks for sharing about your Mum’s journey which sounds similar to my Mums. It’s ironic isn’t it that without the treatment the quality of life is better…… but then the myeloma rears it’s ugly head again. I guess fourth line treatment approaches are quite individualised then. I think the fact that my Mum had a pulmonary embolism during CDT the first time has put them off trying that again. In a way I’m quite relieved she is on Velcade as at least she goes in to hospital for that and so they can see how she is and monitor her general wellbeing more regularly than with the oral treatment. She’s on a once weekly regime so I’m hoping that she won’t have too many side effects. Also she is being given the Velcade subcutaneously (SC) this time (it has changed from when she last had it – intravenously) – and the myeloma nurse told her that sometimes less side effects are experienced with the SC dose.
So – we keep our fingers crossed and watch and wait. All the best to you and your Mum x
Thank you again Tom and San for your replies. It’s very good to talk with people who have first hand experience of the disease, either as patients or carers; I think the majority of people do not really understand what myeloma is all about and the need for repeat treatments, which I think does single it out from many other cancers that are still gruelling but potentially more “cureable”. San – your Mum was lucky to have such a loving and caring family…it is obvious you all really did your best for her and it must have been very difficult to watch, as I am only too well aware.
Andy – I feel humbled by your post and your other posts on the forum. It seems that you have been through such a lot over the last few years and I am sorry that you have had to have various chemos over such a relatively long period of time. I hope you soon get a good remission. Mum has started the Velcade/Dex now on a weekly schedule, (with breaks in between cycles) – so we will see how things go over the next few weeks and months. Thank you for responding.
Take care
Julie
Hi Tom
How kind of you to reply….I’ve read some of your other posts and you always seem so positive. Good luck with the Velcade and the SCT.
I can’t help but wonder if they had offered my Mum an SCT 6 years ago whether she would have fared better but that is something we will never know I’m afraid. I did question it at the time but her consultant said she did not think my Mum would be a good candidate for a SCT at age 70 (at the time). Her first remission was a good one but the others have not been as good quality and have not lasted as long. At the moment I’m just worried as to whether she will be strong enough to withstand more treatment. Who knows what the next few weeks will bring – as you say we just have to stay positive. This all also affects my poor Dad who is also elderly but copes brilliantly with my Mum – he is the main carer as I live 60 miles away from them. All I can do is visit and support as much as I can.
Thanks again Tom and thanks also to the webteam who have edited my first post and removed the unwanted extra text.
Best wishes, Julie x
Hi San
Thanks for your reply. I’m not sure why my first post has lots of redundant text in it, so thanks for persevering with it. Yes, it’s been a tough time with Mum, particularly over the last year or so. You’re right, quality of life is so important and she does not have that at the moment. I read your other posts regarding your Mum and I was so sorry to see she has passed away recently. I know that we are lucky that Mum has had 6 years survival so far following diagnosis, but myeloma is a tough cancer and I think others don’t really realise what the whole family is going through (not just once but a few times over….). Thank you again San.
Any other long term survivors out there reading this?
Julie
