[wendyduffieldParticipant]

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 Myeloma UK she sent me a private very helpful message and since then we exchanged emails now and then. We talked about all sorts of things and she was very supportive to me. She even invited me to Edinburgh, I wish I had gone.  She was until recently a regular contributor to the forum and rarely posted about herself and her own situation but always responded helpfully and informatively to other people’s posts. Not only was she very well informed about Myeloma but she was a teacher, artist, photographer and traveller. She sent me some of her recent work, which incorporated aspects of having myeloma,  It was wonderful and thought provoking. I hope it can be seen somewhere at some point.

I will miss her very much. She leaves a great legacy behind her.

Wendy

 

[wendyduffieldParticipant]

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

 

 

[wendyduffieldParticipant]

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 on curcumin and other alternatives too

[wendyduffieldParticipant]

great news David and Andy 🙂

• This reply was modified 9 years, 11 months ago by  wendyduffield.

[wendyduffieldParticipant]

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 upon works to get you back in remission, it sounds like there are some good options and then you can consider the allo or second auto. I am in a similar position but trying to spin out low dose velcade treatment to keep me in remission until September (12 mths of treatment) or thereabouts when I’ll have a second auto possibly followed by a RIC allo. Thinking of you

Wendy

[wendyduffieldParticipant]

Hi Christine and Chris

the further reduction is great news, incredible after 6 months that the melphalan is still having the desired effect, Chris has obviously responded very well to it. Is Dr Cavet now recommending the mini allo? Good luck with it and keep us posted

Wendy

[wendyduffieldParticipant]

My condolences to Janet and her family.
Dai will be greatly missed on the forum. Like everyone says he was a mine of information about Myeloma and a support to everyone who posted here when he had something relevant to say. What ever he said was always useful and he was one of the first people to reply to my first post. Things seemed brighter in his recent posts as he was starting a new drug on trial (Pomalidimide), I am so glad he had his party with all his family and friends around him from far and wide when he was well enough to do so.
Feeling very sad
Wendy

[wendyduffieldParticipant]

Hi Dai

Great news about you starting Pomalyst soon, it is meant to be the new wonder drug judging by people's experience in the States.

Sorry to hear about the temperature spikes. I had something similar in the summer before I started treatment which my consultant said were myeloma fevers, as no infections could be established.

With regard to the blood sugar levels, mine were checked when I started treatment as I was complaining of frequent urination which I thought may be a urine infection but the doc ordered a blood sugar test and it was 16.5. The doc said it was steroid induced diabetes and we agreed that I would manage it through diet, ie cutting out sugary processed foods as I didnt want to take insulin. They arranged for a nurse to come from the diabetes clinic and she gave me the home testing kit which I use on the days I take dex to keep an eye on my blood sugar levels. In my week off dex, my blood sugar levels are pretty normal and I can eat cake 🙂

Regards

Wendy

[wendyduffieldParticipant]

Hi Terry

I got the same sensations (pulsing and whooshing noises on my last treatment which started after a cold which my GP thought was caused by a blocked nose, but it never went away. My haematology team ruled out myeloma ( I even had a MRI scan of the head) and referred me to ENT. They diagnosed tinnitus and mild hearing loss and said it was something I had to live with. I am convinced it was brought on by the chemo or the dex. It eventually went away for a while but is now back whilst on Velcade and Dex but is much milder than last time and not constant.

I would get your GP or consultant to refer you to ENT. Pleased to see your numbers have come down.

Regards

Wendy

[wendyduffieldParticipant]

Hi Scott

What a rollercoaster you have been on. Sorry that you've had to find your way to this forum but I am sure you find it helpful. I hope you get the link into the under 50's group too. Just wanted to say hope your first cycle of CDT goes ok. I am also being treated at the MRI, they are a great haematology team and you are in good hands. I will look out for you when I'm next there and say hello.

All the best

Wendy

[wendyduffieldParticipant]

Thanks all

I had my final shot of velcade today and that is the end of the treatment for my first cycle apart from the dreaded dex tomorrow then 10 days off, hurray. Managed my part of the triathlon on Sunday (see off topic) with no ill effects,relieved it is all over though. Got a cough and cold and have been diagnosed with steroid induced diabetes,whatever next? Anyone else with experience of this? They are keeping an eye on it and I cant have any cake >:-(

Rebecca, you asked how soon you could play tennis after your transplant? I don't know, I guess if you make a good recovery you could be knocking up after 2/3 months. It was coming into winter when I had mine and I wasn't playing much around that time anyway but I did go for gentle hikes and cycle rides.

All the best

Wendy

[wendyduffieldParticipant]

Hi Scott
sounds like you are getting stronger and hopefully out in a couple of days, glad you found something to pass the time, mine was the Killing series

Wendy

[wendyduffieldParticipant]

Hi all

Well I am pleased to say I did it,I took it very easy which goes against the grain for me but I had no choice in the condition I am in (shame it wasn't a dex day!). My team mates did brilliantly too and we had a really good time and have raised over £2500 for Myeloma UK to boot. Thanks to all that donated and supported.

Here is an action shot of me just for proof!

Wendy

ps never again!

[wendyduffieldParticipant]

HI Rebecca

It is reassuring to know that you had the energy to keep up your all your activities, I have been playing tennis which is my passion but get breathless so easily even in doubles. I had to cancel a much looked forward to tennis holiday in Greece at the end of September since it falls in a treatment week and even if it didn't, it wouldn't be a good idea! I was gutted but look forward to recovering and having a knockabout. I Prof Cook who is a great guy about short team and long term strategy and whilst we did discuss mini allo after second stem cell transplant we didn't go in to too much detail as he said I didn't need to make that decision yet. You sound like you are young and fit enough in spite of kidney function to go for the transplant.

Best Wishes

Wendy

[wendyduffieldParticipant]

Thanks all for your good wishes, I am getting it sub cut which is much quicker than the process before, I ring up at 9 and if I am feeling ok they tell me to come in at 1pm when it will be ready and then all done in an hour, if not feeling ok would have to go on earlier for blood tests and await the results before getting it. I had it before for two cycles and tolerated it ok.

Some short trips planned in the UK Eve after a couple of cycles to see how I am doing, nothing too exotic!

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