[Kazzam2Participant]

Hi Maureen,

Good luck to Ian.

best wishes
Karen
xx

[Kazzam2Participant]

ps,

Sorry if that was dreary, I actually do not feel ill, just usual(a bit worse)pains. Managed to get away to France last week for a couple of days, lovely 🙂

Hope everyone is as well as can be expected, I intend to look in more as it is a lovely, friendly site.

Keep smiling xx
Karen

[Kazzam2Participant]

Hi all, thought I best check in. thanks for all your best wishes. The last few weeks have been hectic, backwards and forward to LRI and general, MRI, bone marrow biopsy (IT REALLY HURT THIS TIME!), full skeletal survey. I am making the most of this week, as it is the only week I will not be going to any hospital appointments! Yippee.

My treatment starts next Tuesday (24th), I am going on the trials MUK5, I have had it all explained and have all the paperwork (my consultant said the do not do SCT for first relapse). So I will be randomised this week, they will let me know if it will be standard (velcade) or MUK 5(CCD, too many long words to type). Whichever treatment I am chosen for it will be hospital twice a week for approx 6 months, so I best get some good books! And maybe start knitting 😉

My consultant said on 27th February that she is sending me for radiotherapy for my sternum, as it is getting more painful.

Vicki, sorry taken so long to reply, I never hear about light chains, only pp and lesions,and bone damage.
Mavis and Megan thanks for your best wishes.

[Kazzam2Participant]

Hi Mavis,

Thanks for your best wishes and reminding me about my toolbox! 😉

Hope you are okay xx
Take care
Love

Karen

[Kazzam2Participant]

ps,

sorry Megan, only just seen your second reply.

That sounds a bit of a cocktail Phil is on, I hope it works out for him, sorry to hear of chest infection, they gave me really strong antibiotics for mine, shifted it.

Thanks for replying and best wishes
karen xx

[Kazzam2Participant]

Hi Megan and Vicki,

Thanks for replying and your kind words. Good luck to Phil and Colin on their treatment/jouney.

Vicki, I have stem cells (my own), in storage, but whether they would do that so soon after my first. I went on trials after diagnosis, and did 4 or 5 cycles of Thalidomide, then prior to my sct had mephalan (made me very poorly).

I keep trying to put it to the back of my mind, (in a cupboard, as Eve used to say). My appetite is not bad, I lost weight through a chest infection before Christmas, I seem to have regained it. That was the only infection I have had since sct (crowded train, I blame for that), I had a bout of shingles in September (approx), but that is viral, and is treated with antiviral drugs. So until the 19th I will plod on. This site helps, and though I do not post a lot, I look in a lot and it has been of huge support.

Again thanks for replying, I will keep you posted.
love and best wishes
Karen xx

[Kazzam2Participant]

Hi all,

I have not been on for a while, been busy feeling a bit sorry for myself, as my November check up revealed the dreaded mm has shown up again since August, my consultant said not to worry and they would see how fast it’s coming back in early January, it has increased from 1.8 g/l in November to 4.2 g/l early January, I was alarmed by this as it was 14.8 g/l when I was originally diagnosed, so at the rate its going … I had an MRI on the 25th January but I am not seeing consultant till 19th February so worrying times.

For the record, my sct gave me complete remission for 17 months, am I being greedy wanting 4 to 5 years? i have stems cells in storage, but do not know at this time what to do.

Best wishes to you all
Karen
xxxx

• This reply was modified 9 years, 3 months ago by  Kazzam2.

[Kazzam2Participant]

Hi Dawn, I too attend attend the LRI, and like Tony I attend the special clinic as like Tony I am on the trial. However, my latest visit (12 days ago), I had to go to the usual clinic, there was a 2 hours delay as there was a shortage of consultants, I was eventually seen (Dr Barton) two and a half hours later, and then I was sent upstairs for trial blood test etc.

It certainly runs better when I only go to the special clinic, hopefully it was only a blip. Maybe I should not say but my favourite consultant is in brackets further up.

How come you cannot see your medical records Dawn?

Hi Tony and Jeffrey.

Regards

Karen

• This reply was modified 9 years, 6 months ago by  Kazzam2.

[Kazzam2Participant]

Hi Cupcake70,

Firstly hello and welcome, I do not get on here as much as I would like but it is great and a friendly and very helpful site, quite unique to us!
when I read your post and concerns it took me right back, I am post sct approx 22 month, not all plain sailing but well worth it. Like Wallace I found the Melphalan awful. but since early last year I have been in complete remission, I still have morphine for bone pain and (now) 3 monthly zometta infusions, but I gained weight and got my appetite back. My life has changed, but once you get over the shock of the diagnosis, you have to accept a new ‘normal’. As for your throat, if it is infection, I am pretty sure they would pick it up prior to proceedings. Have you had high temperature?

I wish you well.
Regards
Karen x

[Kazzam2Participant]

Hi all, I too take the Adcal and Zometta, not sure if my blood is checked though. At my zometta seesion this week I was told my sessions are to be changed to every 3 months instead of every 6 weeks. Usher (nurse) said this is good news, I will ask at my next clinic though.

Regards to all

Karen

• This reply was modified 9 years, 7 months ago by  Kazzam2.

[Kazzam2Participant]

Hi Tom, sorry to hear this, I hope this next round of treatment achieves a longer remission and few side effects.

Good luck and very best wishes.

Take care

Karen
xx

[Kazzam2Participant]

Aye, it is a tricky bugger and no 2 cases are the same, which makes it even more difficult.
Wishing you well.

Karen

[Kazzam2Participant]

Done! Good luck! x

[Kazzam2Participant]

Hi Tom, just read this, I get pains in the same part of my spine, ribs and sternum, I am still on Zomorph, I was told I will always have some pain as there was a lot of bone damage (late diagnosis), so I just have to control it. I had my sct in January 2013, so if my appetite goes or I am more tired, or pain is worse, I worry that it’s coming back. I am sorry this is probably of no use to you, its just we are in the same boat. I hope your MRI went okay and that the pain settles down, hopefully a blip. Sometimes we can overdo things, so rest up.

Regards

Karen

[Kazzam2Participant]

Dear Eve,
So sorry to hear that Slim has passed away.
Thoughts are with you at this very sad time.
Karen x

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