[wendyduffieldParticipant]

Hi Chris

I am about to get a second opinion, the MRI suggested Dr Cavet and he is widely respected but I decided to go out of Manchester as the two departments work closely together so I am going to see Professor Gordan Cook in Leeds soon. As far as I am aware the MUK5 trial is starting imminently at Christies (velcade or carfilzomib) so there must be some reason why Chris isn't eligible. You could speak to Heather McKinnon at Myeloma UK who is the clinical trials contact. I may be going to Christies to start this trial. On the other hand Pomalidomide is meant to be really good and I'm not eligible for that. As Eve said do some research, maybe speak to Myeloma UK and just take your time as Chris doesn't need to start treatment yet.

Wendy

[wendyduffieldParticipant]

Hi Christine

No wonder you are peed off with your doctor (Dr Cavet?),they sometimes seem to show a complete lack of sensitivity when dealing with [b]our[/b] lives and [b]our[/b] bodies and [u]our[/u] disease. I did question like others on here whether it was too soon to have concluded that the stem cell transplant hadn't worked.

However it came, enjoy and celebrate the good news, what is the plan now?

Wendy x

[wendyduffieldParticipant]

Hi Helen

Oh you sound complicated or at least your bone marrow does! Was this recent BMB the first to confirm the mixed cell line? If that is the case then then either it wasn't picked up before or these are recent cell changes. I hope the velcade works for you and you continue to tolerate it.

Wendy x

[wendyduffieldParticipant]

Hi Dai

I was actually feeling much better before I got the intravenous antibiotics but I got them anyway plus a course of horse tablets for a week! Now I think you are being modest about your knowledge of light chains and your disease because you once very helpfully replied to a post of mine about the fluctuation in your light chains, it doesn't really matter about mgs and litres, lets just say mine are 1135 and I seem to recall yours were at the 500 mark when you started treatment on relapse. In the end whether one knows the ins and outs and ups and downs or not we have to hope that our healthcare professionals know what they are doing!

Regards

Wendy 😀

[wendyduffieldParticipant]

Thanks for that information about your Mum's light chains Jill, they think mine were over 10,000 on diagnosis when I had acute kidney failure though they were never properly measured and I had 80% myeloma cells in my bone marrow so I suppose I've got a bit of a way to go yet but it is a fine balancing act between not letting the myeloma cause any damage and delaying treatment because that is going to make you ill and/or in my case because of infection.

I mean you don't run a car at 5000 revs per minute round town all day every day do you!

Helen I don't have a sibling match unfortunately but apparently there is a 9/10 match this time (last time it was discussed after my auto there was only a 7/10 match so I suppose that is an improvement). Just wondered why they are not recommending another auto sct for you?

Wendy

[wendyduffieldParticipant]

Hi Mari

So sorry to hear about Steve's scary experience following his second transplant. As I am relapsing and about to start treatment with a second stem cell transplant being recommended followed by a mini allo, this has given me real food for thought. I hope he starts to pick up soon and you get a few days away.

Wendy x

[wendyduffieldParticipant]

great news Tom, long may it continue xx

[wendyduffieldParticipant]

Hi Helen
I think it will be weeks rather than months before I start treatment. My consultant doesn't think I'll get to the date of my triathlon (August 18th) without needing treatment 🙁 🙁 . Whether I can do it whilst on treatment I don't know, I'm impressed by you being able to carry on with work whilst on velcade though.

Love Wendy x

[wendyduffieldParticipant]

Hi Dai

Firstly you need to bear in mind that I have not had any treatment since my stem cell transplant over 18 months ago and have never had any bone issues fortunately whereas you have been on heavy duty treatment for a long time and it is probably that rather than the level of your light chains which has sapped your energy levels!

Secondly I have to fess up as they say, I am not doing the full distance Olympic triathlon but the sprint one which is less onerous but demanding enough for a first timer with myeloma! I was rather hoping that my light chain levels would stay below 1000 for another couple of months so I could do it before needing to start treatment. Given how well I still feel I am tempted to hold off starting treatment for a little longer but not sure how far I could safely go without risk of organ or bone damage?

When I do start I may be doing the MUK5 trial, fingers crossed I get randomised to carfilzomib!

I hope you get to do your 100 yards very soon 😛

Wendy

[wendyduffieldParticipant]

Hi all
Unfortunately my last test results from 24 May showed a rise from 687 to 1032 mg/litre so relapse has definitely been confirmed and I will be starting treatment shortly. Although I'll have another test next week I really don't think there is any room for doubt although you never know! (Ted, I am tested at the Manchester Royal Infirmary). They don't feel the need to do a BMB yet as if I start a trial I may need one for that and I don't want to have two!!
And Jan, no I haven't had any colds or infections recently (that I am aware of it) which could explain recent rises. I'm glad yours returned to around 600 and appear to be fairly stable at that level and hope that you don't have to start treatment for a while yet.
I suppose there only good thing about this is that it brings some certainty to my situation although I still don't know what treatment I will have and when I will start! My consultant seems to be saying lets wait and see but my view is wait for wait exactly? Kidney failure! Anyway back in next Wednesday so intend to make the most of the next couple of weeks before treatment starts and whilst feeling well. Lots of tennis to be played, dancing to be done and of course eating and drinking plus will continue to train for the triathlon I was planning on doing in August until such time that I cant physically do it!

Wendy xx

[wendyduffieldParticipant]

Hi Christine and Chris
I am so sorry to hear the news that the SCT has been considered to be a failure at such an early stage. No wonder you are feeling devastated. I am sure that Dr Cavet will come up with some alternative treatment or trial for Chris as there are lots of trials out there, but the reason the MUK5 trial may not have been mentioned is that it is a randomisation between Velcade or Carflizomib although the trial is running at Christies hospital very shortly. Given his PN caused by velcade and/or thalidomide that may be why it hasn't been mentioned.
Thinking of you

Wendy x

[wendyduffieldParticipant]

I didn't know Keith but got the impression that he was a brave and kind man. Despite what he was going through, Keith was always on hand to offer support and encouragement to the rest of us. I remember Andy saying that he and Keith had been chatting one time in the day unit and Keith was wondering if I would still be able to do a triathlon this year when I found out that I was relapsing. The answer is definitely yes and I will be holding Keith and too many others in my thoughts whilst doing it.

[wendyduffieldParticipant]

Hi Helen, sorry not been on for a while but was pleased to hear that your back pain not myeloma related, that must be a relief. Hope the velcade works for you. I must admit to being surprised that you've already started treatment when your numbers were in similar range to mine and you were otherwise feeling well.

I've been at the front of the rollercoaster ride recently as my last test showed a massive rise in my light chains to over 600 which you may remember was the cut off point for going to India. I was fully expecting to start treatment tomorrow but my consultant arranged a retest and guess what, there had been a lab error and that test was false and my light chains are at a similar level to previous tests ie higher than normal but not at a level where I need to start treatment. Phew!

For more details welcome to check out my blog posts as follows:-

http://wendyduffield.wordpress.com/2013/04/30/falling-off-the-plateau/ ?
http://wendyduffield.wordpress.com/2013/05/01/ps-back-on-the-plateau

Pleased your pleased about your hair!

Wendy x

[wendyduffieldParticipant]

Hi Liz

Vietnam and Cambodia sounds great, you'll be 12 months post transplant and should be fine. Just take normal precautions and vaccinations if needed, drink plenty of water and take a course of antibiotics with you just in case. I went to India when I was out of remission and I was ok. Go for it!

Wendy

[wendyduffieldParticipant]

Hi Ian

oh bug..er, sorry to hear that velcade hasn't worked for you but at least 70 isn't too high (at my last test my Kappas were 77). I'll be on Revlimid when I need to start but hopefully that wont be for a while. Definitely try and get some time off before you start your next treatment as your light chains aren't high enough or rising steeply enough to do any damage. Keep us posted

Wendy

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