I am so sorry and saddened to hear about Eva. Please pass on my sympathy to Michael and their family.

I knew she nearly died before her transplant but the last I heard she had survived the transplant and was slowly recovering although very very weak. I really thought she was over the worst but it was not to be. When I was diagnosed and posted on…[Read more]

Dear Sarah

I am sorry to hear of the loss of your precious Mark and was extremely moved by both of your posts. I am not a regular contributor on this forum but wanted to offer you my sympathy to you and your family.

Wendy

There is evidence that curcumin taken in high enough doses can have an effect on myeloma cells and can also act synergistically with conventional treatment. Unfortunately it hasn’t helped keep my light chains down but has loads of other health benefits. For further information check out Margaret’s Health Blog, which has comprehensive information…[Read more]

great news David and Andy 🙂

Hi Helen

I am so sorry to hear of your relapse, I haven’t been on the forum for ages (a combination of not liking the new format and my life just running at such a frenetic pace). Like you, I was devastated by my first relapse, you eventually get your head round it and now you are facing another one. I hope whatever treatment regime is decided…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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

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

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…[Read more]

Hi Jean, nice picture of Frank with the baby!

Thanks Eve