Good luck for next week Sandra, will be thinking of you and hoping those blighters have come down more than they've gone up!!!!
Love
Debs x
Hi Gill,
I think it is REALLY individual. I was up at 32 when I was first diagnosed but was still asymptomatic. It rose to 50 before I started treatment (and even then it was touch and go whether I really had bone pain). I know others who didn't start treatment until their pp was 70. I think it's about the other symptoms surrounding you, and your bone marrow readings.
I'm down to 23 (and have just started new treatment on velcade) but they would have done a transplant on 23. Phew, pleased to get velcade after all, even though I'm feeling very tired so far.
Deb x
Ah Gaye,
You made me chuckle on a weekend I don't feel much up to that 🙂
I wouldn't worry one bit….sometimes I think they probably wish we did treat them more like our friends….It's what I'm working on with mine anyway!!
Better what you put than love, hugs and smooches….now that might have sent her running!!!
Hope you're feeling ok
Debs x
I thought I'd give another update, just in case it helps those undertaking the trial.
It seems like I have plateau'd with my treatment on revlimid – my paraprotein has dropped from 50 to 23 and my bone marrow only by about 15%. Perhaps I'd have done better with more side effects??!!
Anyway, all the results are back now and they classed me as having 'partially responded' and so I was put into the randomisation for either velcade or to go straight to transplant. At first I'd been really anti the transplant route with a pp of 23, but they explained why that didn't really matter (all to do with how the harvest works and also about how you can have velcade if necc afterwards and it helps in just the same way). So the good thing was I didn't mind too much which route I went.
And the answer is that I started on velcade (with dex and cyclo) yesterday for at least 4 cycles. I think I'm happier….at least this way I won't wonder 'what if' if I have a short remission post transplant etc. And hopefully the velcade will knock the MM to the ground!
For those of you that might go through it, it is about a 4 hour trip in the hospital. You give blood and have to wait for that to come back before the prescription can go to pharmacy (the drug has a short half life and s v expensive, so they have to know you've arrived and are fit to take it). Then I was hooked up to fluids for an hour. And then we just had to wait for ages for it to come back from the pharmacy. It finally came at about 2.30pm and apparently it normally doesn't come back until 1pm till 2pm. It will be a bit of a bummer with school pick up (we live an hour and a half from the hospital!) but we'll manage.
Anyway, nearly 24 hours on, and the side effect so far is that the lack of sleep has kicked back in from the dex. Obviously the revlimid helped me last time and stopped the problems when I took it in the evening…no such luck this time, and I wake every 20 mins to hour! Oh well, hopefully only for 3 months.
Hope everyone is doing ok on their treatment etc.
Debs x
Hi again.
If you call macmillan they should be able to help with a counsellor….and remember if one doesn't work, try another- it's important to have one you get on with.
I have also heard similar things about doncaster. Don't be hasty but if you're not sure your mum is getting the right treatment, and if she can face the journey you are entitled to a second opinion….and to being treated where you want. I travel an hour and a half to my hospital – expensive but worth it. X
So glad that it has arrived for you Gaye!!
As Tom would say, 'onwards and upwards'!
Debs x
Hi Amanda
Welcome on board to you, and your sister and mum if they choose to use the site too. It is definitely a fantastic source of information and support, and I for one, have stopped looking elsewhere for answers as it is always out of date!
I presume that your mum has been diagnosed with assymptomatic myeloma if she doesn't yet need treatment? That was what I was diagnosed with in July 09 and I started treatment in November. But please don't think that that would mean your mum will. She quite possibly won't need it for much longer. The thing with MM is that it is so individual….there are people who are assymptomatic for 10+ years, so you just have to listen to what her consultant is saying about things like her kidney function, her hb and her calcium, as well of course, as the all important paraprotein or lightchains.
I know what you mean about sort of wanting to start treatment – I felt the same way. Funnily, now I look back and wish I had just enjoyed the time where I wasn't on drugs etc. I think at the time I thought I would be more in control once I started treatment, but I'm not sure that actually changes. But it is easy to say not to wish time away, and much harder to do!!!
One thing I would say, is that I think what it allowed me to do was to get to grips with the cancer, and to understand it better so that it wasn't so difficult once the treatment began. It is something that I feel very lucky about having heard so many people on here who have to deal with a diagnosis and starting treatment immediately – then they have to deal with the psychological side of it and the physical side effects of the treatment together which is much harder.
Anyway, sorry for the long waffle!
Take care
Debs
Hi Tracey,
Welcome to the site and hope that it helps you as much as it has helped me!
Can't say much about CTD as am on a different drugs regime, but just wanted to mention (in case you don't know) that you can't be tested for coeliac's if you have given it up….they need you to have been on it fairly constantly I think. This is said with my niece having it, and a good friend having recently been tested for it. Appreciate you might not want to be tested for it at the moment but just thought I'd mention it in case you want to talk it through with your doctor. If not, have some good gluten free tips/ recipes if you're into cooking!
Good luck with the treatment!
Debs x
Hi there.
Sorry to hear that Patrick's having a bad time with cramps Tina….can't be pleasant at all…then again, what is with MM!! Hope yours aren't too bad either Gaye.
Think I'll be off the revlimid soon….I seem to have plateaud so it looks like in a couple of weeks I'll be randomised (within the Myeloma XI trial) for either velcade or a transplant in May. Scary! But actually I just want to know now 🙂
Love
Debs
Hi Ruth,
I am so sorry about the news about your husband….of course you are upset and worried about him, and for your children.
He is really young, I was 34 (with a then 2 and 4 year old)when I was first diagnosed with asymptomatic myeloma in July 2009 and I started treatment November 2010. When you first hear the news, it is terrifying, but, whilst it might not help right now, all I can say is that it does get easier as you learn more about the cancer, more about the treatment etc. For me, finding out information from this website, the specialists etc was a big part of taking the control back in a situation where I felt totally out of control. But be careful about what you google search as a lot of it is very scary, but to be honest, very out of date.
I think in terms of prognosis, people are talking more and more about longer lifespans but it is so individual. I read something really useful the other day, I think on this website, about how it is an average. And with that, you have to remember, there are a lot of older people who have other complications (hope I don't offend anyone with that comment), a large number of people who aren't picked up early like your husband, so have a short life expectancy, and lots of people who live for 10-15 years!
Perhaps you can talk to your husband about how you can be kept involved so that it works for him and his girlfriend, and for you….do you get on ok with her? It may be that they wouldn't mind you going to some of the appointments? But if not, use the Myeloma UK infoline to support you, and use all of us….it's why we're all on here….to help and support each other.
Also, you might want to join the Under 50 site too (go to Under 50's and take a look at Scotty's post) – that might help a little too.
Hope some of this might help, but don't worry about being scared and worried at the moment….it is really early days for you all at the moment…it is bound to be scary and we have all been there.
With lots of best wishes
Debs
Here you go Jon….Scotty and Phil's email addresses….Scotty is often abroad with work but email them both and one of them will sort you out with an invite
See you on there.
Hi again Jon,
We're real rebels on this bit!!! Not really. I think Scotty and Phil set it up originally for people that bit younger who have slightly different concerns. Work, young kids etc. And the idea that with all that, that life suddenly looks very different when you're diagnosed with MM.
If you go onto the main bit you can get Scotty or Phil's email address and they'll send you a link to the Under 50 site…..the language is riper than on here where you aren't even allowed to use any slightly dodgy language – ironic when you consider that most of us want to swear occassionally on all of this treatment!
But stay on here too, as you'll get lots of support and help from these wonderful people too….and they have so much knowledge, I wouldn't be without both sites! They both have their place.
By the way, drop me your email and I'll send you that spreadsheet….my email is gascoyne2@virginmedia.com
Debs x
What great news Nicki…..hope all goes well with the house move and that you have a lovely break in Poland.
Happy Wedding Anniversary 🙂
Love
Debs x
Hi Jon,
Welcome to the MMUK site and I think and hope you'll find it a great place to get info, support and friends! I don't think I could have managed without this and the Under 50 site. That, and like you say, a hugely supportive group of family and friends.
You don't come across as arrogant at all….very positive, especially considering how early it is for you. Keep that up (but don't forget you're allowed down days too!). You sound like you have a massively supportive group around you, and I have to say, if you have a partner you can talk to, I think that makes the world of difference.
I'm also on the Myeloma XI trial. Got picked for CRD too so might be able to help with side effects etc, although mine were limited 🙂 I think it holds such potential and think we are very lucky to have had the chance to try it out. If you want to talk it over more, feel free to ask more questions….I can send you the spreadsheet I did for it too if you want it? I found I needed that to remember what time and when to take the various drugs!! Otherwise I'd forget! When do you start on the drugs? I think I may be about to move to Velcade as it hasn't worked as well for me as we had hoped. Will know more tomorrow 🙂
Hope that they have you on lots of pain killers for the back and that all is good (as it can be…lol!)
Keep smiling 🙂
Debs x
Hi Marion,
I'm currently on the Myeloma XI trial and got the revlimid (lenalidomide)branch of it. It seems like the side effects are different for everyone but I have to say that I have had minimal side effects in the grand scheme of things. Tiredness, tenderness and some breathlessness and awful tastes seem to have been the worst for me (oh and a bit of bruising but not much). BUT I think I'm probably about to go onto the velcade branch of the trial as I have stopped responding to the revlimid so perhaps a lack of side effects isn't such a good thing!!!
I think everyones views are different, but mine was that it would have been great if it had worked for me! Revlimid is meant to be a really good drug so all in all, to be offered it early seemed quite lucky to me. Now I'm just a bit gutted it hasn't worked.
All the best to you and your husband.
Debs
