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]

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

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]

I've been at the front of the…[Read more]

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

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]

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]

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]

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]

Wendy x

Sorry I've not been on the forum for a while, a combination of being in India for three weeks and then 2 broken laptops! I had a great holiday in India despite a last minute travel insurance emergency. I have written about all of that and relapsing in my latest blog post which you should be able to read by clicking on the link…[Read more]

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…[Read more]

Wendy

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

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

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…[Read more]

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…[Read more]

Wendy

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…[Read more]

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…[Read more]

Wendy

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…[Read more]

Wendy

Wendy x

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!

Wendy

Sorry that you have to start treatment, you will see from all the replies that everyone responds differently to the treatment, has different side effects and the SCT. I had a tough time on treatment which included two cycles of PAD and seemed to be ultra sensitive to everything but I continued to work part time throughout.
My employer…[Read more]

15mths post transplant, my GP referred me for an xray recently for some hip/pelvic pain Ive been getting and the xray report says bone has a mild diffusely patchy appearance which would be consistent with myeloma 🙁

I rang my haematology team and they are going to compare xrays taken at diagnosis which I was told were normal with this…[Read more]

I am still reeling over outdoors paul's death, trying to make sense of it and obviously I cant but I thought I would share my recent blog post in which I mention him and how his death and others has affected me.

In a clod!

have the best day you can

Wendy

sorry to hear about your relapse, that must be hard to deal with, but it sounds like your medical team are on it pretty quickly because of the kidney damage. Hope the treatment does the job and take care

Wendy x

I cant imagine what Melvin is going through and how distressing and depressing it must be for both of you. I found it difficult enough to deal with the diagnosis of cancer and side effects of the treatment and fortunately did not have any problems with bones caused by myeloma. I really hope that the treatment will continue to reduce…[Read more]

sorry to hear about your Dad but you will find a warm welcome here on the forum. Has your Dad actually started CTD yet. I was initially on CTD and was never told to stop driving or report to the DVLA but I found it difficult to drive because I was quite shakey and weak on the treatment and did not want to pass out whilst driving!…[Read more]

its good to hear your immune system is doing its job in fighting the whooping cough, hope you get over it soon so you can return to enjoying your remission (whoop whoop!!). I am doing fine and touch wood no coughs or colds for a good while now, had a great holiday playing tennis in Corfu a few weeks ago and did the patient experience…[Read more]