[scott9Participant]

Hi James

I started maintenance therapy last July straight after the main treatment. I didn't have stem cell transplant as my kidneys were wrecked. I'm also on lenalidomide (Revlamid) and its working fine so far. I'm encouraged to see that Annette has been on it now for two years. I do have neuropathy as I was on Velcade and got it from that.

Good luck

Scott

[scott9Participant]

Hi Nadine,

I didn't have the SCT as my kidneys are only working at about 20% and there was a higher risk. I've been on maintenance therapy since July and so far so good…

All the best

Scott

[scott9Participant]

Hi Jean

Thanks from me too for the info. I'd never heard of the beacon info site either. I haven't bothered to do any research. I just take whatever the good Professor Schey prescribes for me. He seems to be pretty clued up on myeloma developments anyway.

All the best

Scott

[scott9Participant]

Well, its pretty EARLY in the new year, so that still leaves RLY!

[scott9Participant]

There seems to be different varieties of cardamom. The one I know is the Indian type and comes as cardamom seeds. Always found in curries and its annoying when you bite into a cardamom seed.
This type seems to come from a Chinese plant so a different variety I think. Be very careful if you order some on the internet from China. Who knows what you will end up with!!!!

Mind you if you get the right stuff, it should be good news.

All the best

Scott

[scott9Participant]

Hi Chris

I had a similar experience to start. I had really bad back pain from May 2010. I thought it was just muscular but it didn't go away. In Sept I had an MRI scan and they found a broken bone in my spine plus blood disorders. In Oct I got the diagnosis of myeloma. At that time I had never even heard of it! Not a happy time for the next few months, but you do get used to living with it. This Christmas was a million times better than previous year. Believe me, things do get better. You just have to listen to your body and not overdo things. I accept the fact that I won't be as fit as before. You do adapt.

Good luck for the future.

Scott

[scott9Participant]

Hello Keith

I had a flu jab years ago and got the worst cold of my life. Never again any flu jabs for me.

I did get a bad cold a few weeks ago and as usual was left with a hacking cough. It was a form of asthma and I got two different types of inhaler – one preventative and one for when the cough gets bad. They worked brilliantly and the cough is now gone. If all else fails try that.

Hope you and all on the forum have as great a Christmas as possible.

Best wishes.

Scott

[scott9Participant]

I've started to get dry skin and the specialist seemed pretty relaxed about it. I guess it is fairly common. He just told me to use E45 cream which I do. It hasn't cured it but at least there isn't a shower of dead skin whenever I take off my clothes now. My wife had to keep hoovering up wherever I went!

All the best

Scott

[scott9Participant]

Hi Jo

I've just logged on to the forum and have read your news. Absolutely fantastic. I am so pleased for you. Lets hope for a good long remission period for you. There's hope for us all.

Have a great Christmas. Dec 1 tomorrow – unbelievable!

Scott

[scott9Participant]

Hi all,

It is interesting to see that everyone is pretty well spread all over the country. Myeloma is clearly totally random. I live in Purley, Surrey and go to London Bridge Hospital for the cancer and Kings for my kidneys (currently at about 20% function). I'm 58 now and hopefully will last another year or two.

Good luck to all.

Scott

[scott9Participant]

I was on revlimid and dex for 6 months and it got me to almost complete remission. The dex consisted of ten pills once a week so I coped with that OK. The main problem was I just couldn't sleep that night. I'm now on three revlimid pills per week as maintenance and that seems OK so far. I have the usual tiredness, neuropathy etc but as its Hobson's choice I just put up with it.

Good luck

Scott

[scott9Participant]

Hello Jo,

I'm really very sorry to hear your news. You are my number one hero on this forum. You've given me great advice and your posts have given me hope. I pray that you will get through this OK. Just under 3 years sounds not too long to me, but better than just under 3 months I suppose. At least mm does give us all time to get ourselves sorted out. I keep meaning to get my will written but still haven't got round to it yet. Not much to put in it so should be easy enough.

Keep up the fight and keep posting to let us know how you are getting on. I'm getting over a bad cold which just won't go away, but that is hardly worth mentioning in comparison to other problems on here.

Take care

Scott

[scott9Participant]

Hello Jim

Welcome from me too plus my deepest sympathies. I got mm last year at 57 and felt pretty cheated so I can imagine how you feel.
I started treatment with Velcade and then switched to Revlamid plus steroids. After 6 months of that I almost reached full remission. I didn't have the stem cell transplant and am now on maintenance therapy. I've had no particular bad effects on Revlamid – I already had partial neuropathey from the Velcade, and it's still there.
As others have said, stay positive and let your body tell you how much you can do.
Good luck.
Scott

[scott9Participant]

I would indeed have been there, but it is the mother in law's 80th birthday gathering in Bournemouth. Please give Prof Schey my regards as he is the specialist who looks after me. I hope there is some good news re drug trials etc.

All the best

Scott

[scott9Participant]

Dear Eve,
what an excellent post. It certainly makes you reflect on life post MM. It is about a year for me too and like everyone else with MM it has been a year of going to a very bad place and half way back again. I'm not quite in full remission, but close enough. However I will never get my fitness back again and I just have to accept that. It has had a really bad impact on my wife too as she now has alcohol related problems. She just couldn't cope with me rapidly going downhill.
This forum is so good to share experiences and see what everyone else is going through.
Best of luck going forwards.

Scott

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