[BADGERParticipant]

Hello dear Tom

always cheerful advise I hope you are keeping ok I have hd a bad week very heavy Anti B's some sort of stomach bug hope its on its way ou now!!!
Big ((HUG))
lOVE jO X

[tomParticipant]

Hi Jo

Sorry to see your on the BIG Anti B's 🙁 but we know they will kick its A S S) (now lets see if i got away with that one Lol)

You will soon be better and forget all about the Anti B's

We are doing great just got a iccle cold of Baby Max 🙁 just hope i dont get his conjunctivitis :-/ but looking good so far (no pun intended He he )

Love and Hugs (())

Tom "Onwards and Upwards" xxx

[adamsp41Participant]

Hi Jim…I was diagnosed June 08 (I am now 58)…but the mm was asymptomatic until Jul10…when it became "active"…I followed the RCD pathway for 5 cycles until SCT in Jan11 …I have been on X1 trial since Jun11…and I have just been taken off Revlimid to give myself a break as it is causing Neutropenia…once my bloods stablise I will be back on Revlimid…albeit on a smaller dose…I struggled in the early months to accept mm and I still have up and down days…I attend St James in Leeds and have the highest regard for the WHOLE team who take care of us…my CNS gave me the best piece of advice ever and that was to take it one step at a time and don't try to look too far "down the line" …one step at a time…I am quite sure that your team will have your best interests at heart….take care and stay positive …best wishes to you and your family…Phil

[teds31Participant]

Hi Phil, whats CNS, is it your nurse, I go to St James Leeds I go on Wednesday and Im under Dr. Cook, dont often see him though its usually one of his side kicks, but they are very good and answer all my questions.Ted

[adamsp41Participant]

Hi Ted…yes the CNS is the nurse who takes care of you… I too am under Dr Cooks team and attend monthly also on a wednesday…stay safe ..Phil

[teds31Participant]

Hi Phil,Thanks for the reply I go tomorrow (WED) 11:15 ,hope its not busy.:-) Ted.

[eveParticipant]

Hi Jim
What is going on!!!!has something happened ,have you all these e mails on your computer,going into trash can,or are you to ill to reply.
Hope it,s just the trash can eating them up rather than the latter.LOL Eve

[JimParticipant]

Hi all,

I'm back, sorry for the lack of response. It's been a busy couple of weeks with radiotherapy sessions for my back which threw me out of sorts for a few days and a number of hospital appointments(had to have another bone marrow and biopsy, 🙁 ). Anyway I decided to go on the Myeloma XI trial in the end and last Friday was randomised onto CTD. I started chemotherapy on Saturday and so far it's been going ok – not too many side-effects yet, although I realise it's early days.

I just wanted to thank you all for the responses both informative and supportive. Family and friends have been great but sometimes there's no substitute for the views of people experiencing the same problems with the knowledge of experience. This information was a great help in coming to my decision.

So thanks again and I hope I can provide good responses to other people queries – once I become a bit more experienced!

Jim.

[KeithH17Participant]

Hi Jim and good luck with your treatment.
Whatever you do don't become complacent where MM is concerned as it has a habit of coming back to bite you.
I was diagnosed in Nov 2007 had my first sct in May 2008 and now 3 months post 2nd transplant.
I had VAD the first time of which I had 4 cycles and Velcade 2nd time of which there were 8 cycles in all.
During both treatments I found that as I got further into it there was an accumulative effect which became very hard to deal with.
Fatigue was a major problem but I did get through it and when you do you'll find it all worthwhile.
It is very much an individual disease albeit with lots of simularities between patients.
I also had the inconvenience of multiple bone fractures but the RT did help.

Once again best of luck mate and come out the otherside fighting fit.

Keith.

[eveParticipant]

Hi Jim
Nice to hear from you,It is all a bit mind blowing to begin with,but it does get easier.My husband got CTD side of trials.
You just might sail through treatment and be on your feet in know time,every body is going to tell you listen to your body,it is important.
Jim watch out for Dex it does change your moods,make sure the person closest to you knows,so they realise its the medication.Also steroids mask infections,if you do your own ops and just keep a book with,bp,temp and weight and any side effects,once a week will do unless you are not feeling great,then temp,should be watched.When you go for bloods every 21 days,they can see straight away how you are responding.
I would agree with you no matter how good family and friends are,you can only burden them with so much,
On here you can ask about anything,there is always some one who is a step in front of you,taking the same path,but remember everyone reacts different..Good luck and sorry to hear you had to have RT but it does the job and stops the pain.Lots of people on here have had it before chemo. eve

[CarolBradley1Participant]

Hi
I have been away so please accept my apologies for the delay. Welcome to the site, although so sorry you have had this awful shock.
I have been on the Myeloma trial since last July although I was diagnosed in 2005 and managed without treatment until then.
I have had a range of treatments including Revlimid and the stem cell transplant and although I won´t say it´s been easy the result has been worth it. I am now officially in remission and did start on a maintenance dose of Revlimid but am currently having a "holiday" as I was losing a bit too much weight and was so tired and had neuropathy in my feet mostly.
I am feeling ok although still very very tired and a bit "fragile" which does irritate as I am a really active person (3 horses) and all the other usual stuff we all try to fit in. However, I do count my blessings and am so very grateful that I had the opportunity to join the X1 trial.
Best of luck, keep your chin firmly up and try to remember that new drugs are coming through all the time and this rotten illness is soon going to be much easier to treat and control I am convinced after watching how the American teams are working on it.
Best wishes
Carol

[tomParticipant]

Hi Jim

Pleased your doing Ok keep it up Mate its a long road you will need to travel but you will crack it am sure 🙂

Tom "Onwards and Upwards"

[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

[eveParticipant]

Hi Mike
Nice to hear from you,I understand were your coming from,but some things need to be said and told,for people who are here for the long haul,but I can understand your concerns,specially as you are the patient but as a carer,it is good to know what to expect.
having a macabre sense of humour has helped me.
Slim has been in treatment since February had no remission and treatment is on going with Velcade but we will get there, we dismiss negative thoughts,or as tom says on ward and up ward.
I wish you a long remission Mike ,Have a lovely time .Eve

[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

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