[MikeBParticipant]

Hi Eve

Our different perspectives just highlights the differences in how this flipping disease, the treatments and our ways of dealing with these change between individuals. I guess you could summarise as "each to their own".

Similar to Slim, I have been in treatment since March but have not achieved full remission. Valcade was not considered right for me at this time – the hope is that SCT will get me to this. A positive attitude has been essential tempered with a realistic view of the facts, short term and long haul.

Thanks for your wishes, and please accept mine for a good journey for Slim, You and your family/friends. I am sure from the passion in your post that you "will get there" as I sincerely hope we all will.

Mike

[MikeBParticipant]

Hi Jim

As all above, so sorry that you find yourself in this select club. I am 49 for a few more weeks, and was diagnosed in January of this year a week after being diagnosed with diabetes. Total shock and still coming to terms with it with tearful episodes at times especially when on entinox or having another needle inserted.

I started on the XI trial in March on the RCD arm, completing 6 cycles. At this stage the statistics didn't allow progression straight to SCT so after open and frank consultation with my wife and my consultant, decided to exit the trial when the randomisation put me on the path for 4 more cycles, before SCT. It is only because the treatment path didnt work for me that I left the trial – I have opted to continue providing feedback on progress to the trial after leaving. I have have just returned home from St Barts where I have completed SCT harvest over two days – back soon for next stage.

I did have side effects but none that were unbearable.

This site can provide some great support and there is loads of experience across the contributors but as you may already be aware this disease effects us all differently, as do the drugs. As stated above, and what worked well for me was to, listen to my own body and measure what I do to how I feel.

I am guilty of not going on here actively as much many, but when the smelly stuff gets too deep, it isn't always what I need to be doing…..sorry.

Hope all goes well for you and yours, this disease is the (insert superlatives) pits but the support provided here does help massively. Use it as and when you need.

All the best
Mike

[MikeBParticipant]

Carol
0!!! That's fantastic! I am even more keen now to see what my latest "scores" are. Your post is definitely encouraging and these bursts of encouragement do help me to get past the harder days. Ice cubes seem destined to become my new bestest buddies.

Best wishes to Helen for the SCT, i hope that with my last paraprotein count at 4.1 I will not be too far behind.

Eve, I can only imagine the stress and disappointment that you and your husband must be feeling. Don't give up as we need each and every one of us to fight this flipping disease. I've not really bought into the Warrior label, but as time goes on, it is becoming more understandable to me.

Mike

[MikeBParticipant]

Hi Carol
I am on the trial and on the Revlamid leg but not as far down the journey as you. Whilst I can't answer your questions, I will be watching to see what may await me.
Best wishes to you for your continuing journey.
Mike

[MikeBParticipant]

Hi Helen

Sorry to hear of your Mothers diagnosis. I think from your post that your Mother is in the first cycle and has just got through the first four days of multiple Dex tablets each morning. I am on the RCD trial and just at the end of cycle (month) 4 and have to say that those four days on Dex, twice in each cycle, have been the only ones that have been unpleasant. The details of how it effects each individual are different but if your Mother is concerned that the side effects are either worse than she was warned or are difficult to cope with, she should contact her consultant. I did have the same symptoms as your Mother in the first few cycles except for the tiredness. It had he opposite effect and I became the Duracell bunny – like I said it effects every one differently.

If you're in doubt, speak to the consultant. I hope this helps and wish your Mother the very best through the rest of the treatment.

[MikeBParticipant]

Hi Debs

trust the bed day was effective. The effects of velcade are not sounding so good. Had sciatica (hoewever you spell that one) as part of initial symptoms and being less mobile was not great at all.

Sleep patterns are completely off the wall now with two hours tuesday night and a very welcome 7 last night. I am hopimg that the 4 hour drive home from work (weekly comute) will help to improve that further tonight.

I am torm re the figures anmd take on board your comments. I have been careful to pretty much avoid stats on all the usual stuff as they seems scewed to the over 60 bulk of the Club. Might have to take some more notice though as I get sooo intrigued when reading other posts about these. Food for though t me thinks.

Hope things improve with velcade.
Be lucky
Mike

[MikeBParticipant]

Hi Deb
First cycle went better than I had any hope that it would as far as side effects, and whilst the Consultant and team were pleased with the tesults, I didn't note them in my relief and must remember to pick them up at my next consultant 01/06/11, along with cycle 2 results.

Just started second batch of Dex on cycle 2 so not sleeping and warding off hiccups with peppermints. Not bad as side effects go but I know that it will be the Dex that gets me through tomorrow like a duracell bunny! Still managing to work full time ish but only possible because my employer is being real supportive. To be honest the role of house husband seems harder work.

Hope you do get on with the Velcade and it gets the results you're after. These drugs seems to have a very individual effect on us don't they. It's interesting to read Min refer to the Beast – not a term I have used so far but there have been time that it may have been appropriate.

Right, time to try that sleep thing again.

All the best to All.
Mike

[MikeBParticipant]

Hi Debs

Not been on the discussion board for a while as I found I needed to get my own head around things. First cycle went better than I could ever have hoped with just the, what seems to be usual, side effects of the Dex.

I am almost a week into the second cycle now having just got passed the first 4 days of Dex again and it feels a little harder than the first. I am not aware of any down side with the Revlimid yet so counting myself lucky. The fingers are tingling a bit but at least that makes the blood tests for diabetes less painful – a bonus.

You are spot on with the taste bud thing. I have found that Kriek Beer (cherry) is the nicest tasting but am willing to take advice on further options. Not drinking much these days either which feels strange…

Hope all is going well with you and I will be keeping in touch more going forward. Going to take on Kay's matra and let my body make the decisions, it seems to know better than me..

Mike xx

[MikeBParticipant]

Hi Bridget
Thank you for your comment – I really must take on board the bit about sharing side effects with the Good Guys – I am not good at that apparently.
Mike

[MikeBParticipant]

Hi Eve

Thanks for your comments. I am sure my wife will be keen to read your comments. Hope the journey is good for you and your partner.

Mike

[MikeBParticipant]

Hi Debs
Been "randomised" today (another new experience)and selected for the Revlimid arm – think thats the terminology. Didn't take your comment as patronising as I am still on a learning curve in that respect and will be for some time I think.

Your experiences sound encouraging – thanks for sharing those and your good wishes.

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