[wendyduffieldParticipant]

Hi Keith

That's a lot of platelets and transfusions, I do hope the medical team get on top of it and you can get a break from the relentless visits to hospital which is tiring in itself and that you get some sleep tonight. When will you get your next paraproteins results?

Take care

Wendy x

[wendyduffieldParticipant]

Just an update, I had a light chain test done privately recently in the hope that it would give me peace of mind but it didn't as it showed another rise from 39 to 77 in my kappa light chains. I was gutted and devastated. My support nurse agreed that it would seem to be the case that I was relapsing but still said I may not need to start treatment yet if all else is well. I will see a doctor this Friday and have another light chain test and hope that the rise isn't as dramatic this time and don't need to start treatment. I will also need to make a decision about whether to cancel my holiday to India on 1st March.:-(

I feel so gloomy and sorry for myself as I know the general consensus is that the first period of remission post transplant is meant to be the longest then about half of that after the second and then what???

Ozzy, sorry to hear that you have relapsed. I'm sure they will still give you the velcade unless you are really feeling ill. Hope it goes ok.

Take care all and keep warm!!

Wendy

[wendyduffieldParticipant]

Hi Lesley

welcome to the forum, like you as was diagnosed on Christmas eve, December 2010, there is never a good time but xmas eve is especially not a good time!

Also like you I was asked to think about going on the Myeloma X1 trial, bombarded with leaflets and then asked the next day what I had decided. I opted for going on the trial because there was the chance of getting revimid (I didn't) and because there would be better monitoring and follow up plus the chance of getting revlimid as maintenance post transplant. As it turns out I had to come off the trial as I was intolerant of Thalidomide but that's another story. I have no regrets about opting for the trial, if I hadn't I would have been given thalidomide anyway.

Wishing you the best of luck with your treatment whatever you decide.

Wendy

If you want to read more about my experience of diagnosis check out my blog post called the nightmare before Christmas

http://wendyduffield.wordpress.com/2012/12/20/the-nightmare-before-christmas/

[wendyduffieldParticipant]

Hi Andy

I'm glad to hear you're feeling a bit better and stronger and I hope you manage to get your holidays in. I hope that the revlimid does the job for you, 11 cycles and continuing! I intend to do the triathlon as long as I am feeling well which I am, off to India at the beginning of March, somewhere I never thought I would be going after diagnosis. You're absolutely right, we've all got to make hay while the sun shines 😛

[wendyduffieldParticipant]

Oh dear Ozzy, not the news you want to hear, sounds like your consultant is on it though, are you experiencing any pain or other symptoms? Good luck tomorrow and keep us posted.

Wendy

[wendyduffieldParticipant]

Hi Keith

Thanks for your comments, you have more experience than you would ideally like of relapsing! I feel very well as I said in my post although at the level they are at I suppose it is unlikely at the moment that myeloma is active or that I will need to start treatment. Whilst I continue to feel well, I will carry on with my plans to do a triathlon in June.

Hope you are OK

Wendy

[wendyduffieldParticipant]

Hi Charlie

I think it really depends on whether you have any bone damage and what pain you have. The Myeloma UK booklet says walking and low impact exercise is good like yoga and pilates and this would include swimming but as swimming pools can be a hotbed of germs these are probably best avoided!

It really depends on what you can do. I was pretty active before my diagnosis and once I got past the treatment stage and my back pain went I was able to do more walking, played tennis and cycled. After my stem cell transplant there was no stopping me, the Manchester 10k run, more tennis, skiing, outdoor fitness classes and lots of walking. I am now starting training for a triathlon!

I checked the above out first with my consultant and she told me to build up slowly but do what I wanted as I did not have any bone damage (turned out that I did but thats another story).

During treatment, I was really down and in pain and nearly chucked out my sports gear thinking that I would never be able to play squash/tennis again. A year later I was doing the Manchester 10k! How things change but whilst you are on treatment take it easy, a bit of gentle walking and stretching, tai chi or qi gong.

Wendy

[wendyduffieldParticipant]

Hi Keith
gutted for you re the bendamustine, so its out with the new and in with the old. CDT can be very effective and I really hope it works for you. Take extra care not to avoid infections (hard when you are in hospital all the time) and look after yourself.

Wendy

[wendyduffieldParticipant]

Hi Helen

I was quite active prior to diagnosis and did the 10k run in 2009 but I am more so now, but was inspired to try the triathlon by the Olympics and thought it would be good fun! My real passion is tennis though and I am now playing 2/3 times a week (and its outdoors!). To be honest I nearly chucked out all my sports gear after diagnosis when I was on treatment as I really didnt think that I would be able to do all this stuff again, so glad I can.

Hope you're getting better from the whooping cough, any holiday plans in the pipeline. Im off to tromso in Norway for a few days next month for some winter activities and to hopefully see the northern lights again and light chains permitting, India at the beginning of March!:-|

Wendy x

[wendyduffieldParticipant]

Hi Keith
Sorry to hear your news and really hope it is a blip. If it isn't, at least the consultant has come up with some other options, but its no wonder you're tired and fed up. Take it easy and fingers crossed for Friday.

Wendy

[wendyduffieldParticipant]

BH Sandra, you mean to say you've been going on with a fractured hip all this time, glad to hear its healing up and hope your mobility is improving and that your blood tests were goood

Wendy x

[wendyduffieldParticipant]

Hi Jo

I dont think it was my post you read on facebook as I dont have paraproteins but see my recent update – its still good news!

[wendyduffieldParticipant]

Hi all
well I am very pleased to report that according to the radiologist in the multi disciplinary haematology team that reviewed my xrays, apparently there is no difference in the recent xray of my pelvis to the xray taken of my pelvis on diagnosis, the implication being that the recent xray shows old damage, not new damage caused by the return of myeloma. Hurray!!:-)

Strange that it was told that my skeletal xray survey was normal but anyway I'm happy that its old damage (and the pain is going too!)

Another excuse to celebrate 😀

Wendy

[wendyduffieldParticipant]

Hi Blue
welcome to the forum, shame about your relapse. I understand that with the donor transplant if its a reduced intensity one you dont get the same side effects because you are not getting the chemotherapy that causes it. I did a bit of research into it because I was recommended to have one but in the end they couldnt find a fully matched donor so I only had an auto SCT so you are lucky that your brother is a perfect match. There are one or two people on the forum who have had one, Jet Black, she also has a blog which you will come across if you search under her name and a few others as well.

I also suggest you discuss all your concerns with your haematology team, they may also be able to put you in touch with someone thats had one.

Wendy

[wendyduffieldParticipant]

Great news Michele, good to hear you are doing so well after your transplant, have a great xmas, Im sure you will with that news!

Wendy

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