Hi Victoria
You and your family have just stepped through the looking glass. It’s not a place any of us want to be. (it’s my husband who has MM not me). Yes, it’s frightening and scary, but you can adjust to the new reality. It will take time, but give yourself permission to cry. It is a form of grieving.
One thing i read recently was about the spiral of care. Imagine a spiral. At the centre is your mum. Next to her is her family, then after that her friends, then her family’s friends. Your job is to support those who are nearer to the centre than you. You seek support from those further out.
Let your mum know you’re scared and frightened for her, but right now she needs to concentrate on herself, and is probably feeling guilty about putting her family through this (as if we have a choice!!). So look after her, give her comfort, but get comfort and support from your own friends and family. let them help you.
i also found playing very loud music in the car where nobody can hear you worked for me!
You’ll be amazed how quickly this new normality takes over and you’ll be able to deal with it. A lot of people may not know what to say to you and your family, so you may have to help them out a bit by giving them permission to be speechless.
most of all, be kind to yourself don’t try to be superwoman.
xx
Different drugs, different doses. Just because you get more cyclo orally doesn’t make that a high dose and the melphalan a low dose. 300ml of vodka is a lot more potent than 300ml of beer!
I don’t think you can get an answer to your question. That’s the delight of MM. You can ask averages till your blue in the face, but historic data is just that – historic so doesn’t look at new treatments / methods of care etc, and it only works over the population of MM sufferers.
If the risk of never leaving hospital is 5% for all (seems rather high to me), then that’s one thing. But if you are one of those 5% then your risk is 100%. Population vs personal statistics are a complete area of study in themselves.
My husband was told he’s fit, young, healthy, reacted very well to initial treatment, complete remission. He got 12 months with the SCT. In the next bed to him in the hopsital was a gentleman coming back for his 2nd SCT after 16 years!
Listen to your doctors. Ask for the low down on how you are likely to feel after the SCT, get them to explain it to you as thoroughly and as many times as you need to make up your mind. then do what you feel is best for you, and don’t look back.
good luck x
Hi
My husband – who is the one with MM had a cold and it took him forever to get over it. I wonder whether it just takes longer these days.
Hi Terry
can you see if you can repost your post (great use of english there fiona!) without all the styling / font size instructions etc – it’s impossible to read – or is it just my computer failing to read it properly?
Hello Dusk
I am sorry to hear of your problems you’ve had along the way. And it’s such a shame any of the MMers hvae to suffer at all.
I would endorse what you have said. I find it very strange to have friends and colleagues tell me and my husband that we are amazing. We’re not, we’re just trying to live with some degree of honesty and normality in what is far frm a normal world now. He’s the one with MM but we as a family are dealing with it together.
I think it is only when you are faced with something awful that you learn what you are capable of. I beleive that most people, if put in the same situation, would deal with it in the same way. Most people are, however, fortunate enough never to have been put to that particular test, so don’t know how amazing they probably are.
My husband has just started a course on mindfulness to do exactly what you say, focus on the now. I very strongly beleive that there is no point thinking what if, or focussing on what cannot be changed, but concentrating on that over which you have some control.
I would hope that we can all recognise a bit of that wonderful young man in those around us, to try to face this terrible disease with some humour and to make the most of a bad situation. I bet he thought he was only doing what he could.
As my sister says, when life gives you lemons, add gin, tonic and ice.
I suspect it’s the steroids but speak to your doctors. X
We have been fortunate to have had the benefit of Prof Morgan’s expertise first hand. We heard a while ago from our primary consultant that he is leaving, and at the time felt a bit winded by it and rather thought “how dare he leave us!!”.
If it were up to me I would nail Prof Morgan’s feet to the floor and take away his passport (!) but I recognise that he really should be able to go and do what work he wants, where he wants, and if that helps the general myeloma community, then great. I expect, and trust that those he has worked with and trained are just as good as he is.
I wish him all the best in his new venture.
Hello
The complicated answer is yes and no. Yes, it works for some, no it doesn’t work for others. That’s one of the horrible things about MM. But on the whole it is a good drug. If your brother is worried that he has not been offered chemo with it, then perhaps a call to his consultant to find out his/her thinking would set his, and your, mind at ease.
There are a few ways of treating this disease, and most doctors will try to find the best way for a particular patient, within what NICE allow them to do. Perhaps they felt that as the chemo element of the treatment is or can be quite brutal, they would see if they can get away without it initially.
My understanding is that Velcade works best in combination with steroids, and the chemo is an added weapon, but if you need to drop one, then drop the chemo.
My husband is the MM patient. He had CTD first, and then at relapse got VCD. It worked very well, so that he got to drop the chemo part way through cycle 3, and is not on velcade for as long as possible until the allowed doses run out. The MM is undetectable at present, and we hope that the Velcade will keep it that way longer than if he stopped taking it.
Good luck to your brother. Perhaps if you or he does not want to call the consultant, you could speak to one of the nurses on the infoline here. I haven’t had to use them myself, but everyone who has has said how wonderful they are.
Hi
Only you know your family, but I wouldn’t worry too much about being realistic. Perhaps they too know in their hearts that trips aren’t possible, but need to pretend they are to help themselves. I knew someone who was planning her next holiday from her hospice bed as that was her way of coping.
Good luck xx
I’m so sorry to hear your news. I am afraid I can’t answer your question, though from experience as a probate lawyer, bereaved families often tell me that the doctors’ estimates are often wrong, and people tend to go when they’re ready.
I would say take the time to be with her when she’s able to enjoy your company, you will both benefit. X
I’d love to have had a credit card sized information card to give to people who have asked about myeloma so I didn’t have to keep repeating myself.
Hi Flitterfly, i thought i would just check in to see how you are doing? I hope you’re managing and had a good Christmas together, and that things don’t look so bleak from here now. x
My husband had CTD first followed by SCT and got total response disease undetectable, but only for 1 year. He had 4 cycles of velcade and again total response. NICE says leave it there and wait for it to come back. But 2 doctors have completely disagreed with NICE with one suggesting jumping straight to allo transplant and the other stretching out the velcade and then considering moving quickly to Revlimid.
We’ve chosen the latter while keeping the allo as an option.
Neither of these is straight NICE guidelines but the consultants are more concerned with treatment than guidelines and have happily tweaked my husband’s treatment description – the NHS do not offer maintenance but do allow ongoing treatment. This gives me hope that we still operate within a regime where the doctors are doing their best for the patient and not just slavishly following guidelines, whilst paying lip service to what they’re meant to do.
I’m pleased Dusk that you have found your doctor who is clearly treating YOU and not just following the rules in a book.
I’ve been following this topic with interest. I absolutely believe that here in the UK access to treatment should be on needs and not cost. However if CDT works as a frontline and is cheaper than velcade initially then surely using that is a good idea. Paracetamol is still used in hospitals as a frontline pain killer because it works and it allows them the funds to use the big expensive guns only when they’ve exhausted the other stuff.
I know a few people who work for big pharma and yes, to a man or woman they all are dedicated and caring souls. My sister is doing some research into the cost of creating new drugs, and so far she’s found the average cost of getting one to market us $1billion. I guess the pharma companies need to charge a fair bit to recoup that and the costs of the ones that didn’t quite make it all the way but still cost a lot. people still die of dysentery in the 3rd world because they can’t afford clean water. That should be top priority nor drugs for a small minority.
I have probably written this all wrong, but I’m glad I live here and not in a developing country where so many other things could kill my husband before they myeloma.
Hi
I wonder if it is worth you asking a couple of questions:
Firstly why you can’t have the results and secondly if you can change consultants.
It sounds like you are getting an extremely raw deal compared to most here and that is simply unacceptable.
In my job – which is entirely non medical I have to give advice to people. I often know that whilst I know just as much as my colleagues, I will get in better with some clients than my colleagues and vice versa. Sometimes we click, sometimes we don’t and it is for the professional to be a grown up and accept when it is better for the client / patient to build a working relationship with someone else.
I hope you get answers. Perhaps speak to the head nurse or contact PALS in your hospital?
Good luck, you deserve it.
