[wendyduffieldParticipant]

Hi Terry

12 months remission is pretty crap, I had about 15 months and am now relapsing but don't need any treatment. Like you I was angry, devastated and depressed and very gloomy about the future. I have come to terms with it now and feel a little calmer.

You might want to check out my blog post about relapsing when I first found out. I was pretty angry!

http://wendyduffield.wordpress.com/2013/01/22/hello-relapse-goodbye-remission/

With regard to the work issue, I returned to work two months after diagnosis with some time off during treatment and a couple of months off after my stem cell treatment. My first reaction upon finding out that I was relapsing was that I should stop working as I could not bear to spend whatever time I have left working. However I am going to wait and see how things go as when I need to start treatment it is not as if I can do much else and going to work pays for the holidays! I also have to consider what else I would do as I have not got a real hobby or passion that would seriously occupy my time whereas you have a wife and two young children and a hobby which you really enjoy. My advice is that if you can afford not to work then you should stop and spend time with your family. It sounds as if you are freelance so maybe another option would be to reduce your hours as a compromise?

I wish you well in whatever decision you make.

Wendy

[wendyduffieldParticipant]

Hi Helen

We have very similar seats on the rollercoaster! I think the news is mostly good but its all relative to what stage you are at. The main thing is like me you are feeling well. The neutrophils probably due to the revlimid so maybe the week off will sort that out.

I'll be having a light chain test on Friday so back in the land of uncertainty!

Wendy

[wendyduffieldParticipant]

Hi Maria,
What would be the alternative to a transplant at your age? It is the gold standard treatment for younger patients and even though my remission lasted just 15 months there are others who get 5 or even 10 years and no way of telling whether you're one of then. Although I didn't have a long remission I recovered fairly quickly from what is an unpleasant but not a risky procedure and have been treatment free apart from Zometa for nearly 18 months which has been great. My debate is whether to have a second one, I don't regret having the first one. I don' t Know why your kappa light chains went up but it's good news that your PPs are low. You could always talk over your concerns with your consultant or support nurse?

Wendy

[wendyduffieldParticipant]

Hi Eve

I am gutted that Slim appears to be relapsing after such a short time in remission and such a hard struggle to get there. I'm sorry that I missed your post before and it was only when you posted on my blog that I realised what was happening. At least it cant be said that you didn't make the most of the remission that he had and I hope that he doesn't have to start treatment for a while yet.

Wendy x

[wendyduffieldParticipant]

Hi Helen, glad you are feeling well (its ironic isn't it that we are relapsing when feeling so well) but disappointed for you that you had to shelve your plans to go to Peru. Do you really think you cant go because my consultant said I was ok to go to India as long as my light chains were no more than 600? Enjoy Cornwall anyway

Wendy x

[wendyduffieldParticipant]

That is great news, a very significant reduction, keep it up, no I mean down!!:-)

[wendyduffieldParticipant]

Ooh Helen, you naughty girl! I had nothing in writing either! Hope you had a nice time in Lanzarote. My consultant doesn't seem to think I need a BMB at this stage so that's a bit of pain avoided! Fingers crossed for your results. Relapsing is certainly a tricky phase but if we are in good health then long may it continue. Keep us posted too

Love Wendy x

[wendyduffieldParticipant]

Hi Jean, nice picture of Frank with the baby!

[wendyduffieldParticipant]

Thanks Eve

[wendyduffieldParticipant]

Hi Nicki.
sorry to hear about Sam's relapse, I had my SCT in September 2011 and I am now relapsing, 🙁 my kappa light chains were last 69 but consultant says don't need to start treatment until they get to around 600 as myeloma isn't active until 600 plus if I am showing no other signs. Haven't had a BMB though. There is talk of having revlimid and dex when the time comes so I hope it doesn't come for a while yet. I am not keen to have another SCT given the relatively short period of remission and I have asked my consultant to come up with other options.

I was gutted too but have got my head round it a bit more now

all the best

Wendy

[wendyduffieldParticipant]

Hi Helen
oh I wish you wouldn't copy me! It really is disappointing to find out that remission is coming to an end after what seems to be such a short time for both of us. It is not a good place to be in this watching and waiting period but it is still better than being on treatment so lets hope we both have a long period of time before we need treatment and that we feel well. Have a great time in Barcelona.

Love Wendy

[wendyduffieldParticipant]

Hi Eve

I have just got back from Tromso in Norway so didn't see your post till now. I had a great time and saw the northern lights and went dog sledding. My light chains stayed more or less than same on my last light test so no need to start treatment yet, the consultant said I can go to India if they don't go over 600 so as they were only 69 on 25 January I have quite a lot of leeway before 1st March. And yes I will eat mostly veggie food when I'm there which is what I did last time I was there and I had no stomach upsets at all!

Hope you and Slim are keeping well

Wendy x

[wendyduffieldParticipant]

Hi Ozzy, hope you feel better soon, you are obviously having a bad reaction to the velcade, have they given you anti sickness medication and stuff for constipation, you have to take it every day regardless.

Wendy

[wendyduffieldParticipant]

HI KEITH,yes I realise the law of diminishing returns when it comes to a second stem cell transplant have told me medical consultant that I am not keen to have one until maybe further down the line holding it in reserve, so I have asked them to come up with something else instead. The good news is that my consultant says I should be fine to go to India on 1st March as long as my kappa light chains are not above 600 by the time of my next test on Feb 15th which as they are at 77 gives me a bit of leeway,he says below that level they shouldn't cause any damage so hopefully I can go to India even if I have too start treatment when I come back. Hope the CDT works for you Keith

Wendy x

[wendyduffieldParticipant]

Hi Suan

I had weak and wobbly legs too but think it might have been caused by the dex not the thal or maybe both? Are you taking dex too? I already had my SCT in September 2011, I'm now starting to relapse. You need to see what your doctor says about having it or not.

Good luck with your treatment

Wendy

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