Hi Yvonne,

I was actually diagnosed with MGUS in 2003 with a PP of 2 and monitored till 2007 when it went up to 4. The initial diagnosis was a shock. As the years of monitoring went on and the final consultancy came in 2007 with the words you may get it when your 70 i resigned myself not to worry about something that may never  happen.The stats…[Read more]

Hi Ron,

I currently have shingles 6 months post SCT.I just brought the subject up a couple of days ago on my journey for comment. I echo Annette’s comments. Get Pauline to the doctors asap. I came down with it last weekend friday night and waited till monday morning to go to the hospital (bone infusion due). Given antiviral Valaciclovir and…[Read more]

Alan,

Sorry if i was unclear in my reply. I echo carol’s sentiments with staying at home and reducing contact to prevent any possibility of infection.

Best regards,

Stanley

Hi Carol,

With the post i was surmising that nearly all of us have had chicken pox before the adult age of 18. You must be very special as the percentage is around 95% who have. I don’t know anyone close to me who hasn’t had it.I was given no medication post 50 days but have just been given a course of  valaciclovir. Was just interested if the…[Read more]

Hi Andy,

Happy new year to you great way to start 2015 with the fantastic news of your all time low PP’s.With the possibility of SCT on the horizon you must feel positive.I know how you feel about your latest blip was enjoying a great day out at the rugby visiting the guiness tent on a regular basis  two weeks ago after great remission then last…[Read more]

Hi Noel,

I hope all goes well and it brings you long remission.

Best  wishes,

Stanley

Hi, Alan,

Once you have had your full course of Chemo as per your consultant the final part of the process is a larger dose of chemo which some call a priming. The purpose is to raise the CD34 count in combination with GCSF injections which in turn will assist in the harvesting of as many stem cells as possible. The harvesting process is…[Read more]

Hi to all,

I would be interested in comments from other post SCT patients around the subject of shingles. I have just been diagnosed just short of 6 months post.I have read online that 50% of all SCT patients will get shingles in the first 12 months post SCT with the majority of the others within the first 3 years.

Best regards to all,

Stanley

Hi Rebecca,

Again thanks for the kind words. I’m determined to lock this away until 6 months post test and if i’m in the same situation i’ll be an even happier bunny. With no drugs for the near future i may partake in more than a few glasses of champers. The positive advice on remissions of others including the 22 year remission is one hell of a…[Read more]

Hello again to all,

Final chapter of my first treatment journey. I have just had 100 day post SCT results. No detectible PP, normal FLC, zero clonal plasma cells in bone marrow and my 4″ x 2″ x 2″ plasmacytoma on the fifth rib has completely gone via pet scan. This has put me in sCR as defined by current criteria. My consultant described this as…[Read more]

Hi,

I had 4 courses of CTD. After 2 weeks came out in a similar rash. Stopped allopurinol and co-trimoxozole(teamm trial) and problem solved. I was put on dapsone as a replacement for allopurinol with no problems. Is your husband taking either of them?

regards,

Stanley

hi all,

Just had another bmb yesterday for post 100 day SCT. I must admit it was done in the clinic by a woman doctor and was the least uncomfortable ive had yet. The worst bit was the local. She said the trick was to get the local to the surface of the  bone ?. Seemed to do the trick or it may have been her technique thats what she said…[Read more]

Hello to all,

Just an update on my journey. Went to see the consultant today +77 days SCT FLC Kappa 12.21 lambda 7.33 ratio 1.66. My initial kappa reading pre treatment was 4120 with a ratio of 527. I am awaiting PP but he said based on FLC  it should be very favourable (pre cyc infusion and SCT 0.54). If my plasmacytoma has gone(due pet scan in…[Read more]

Hi Michele,

What an inspiring post.I am so pleased for you.

Best wishes,

Stanley

Hi Chris,

Sorry you find yourself here. I was diagnosed earlier this year and completed 4 cycles of CTD followed by STC in August. Unlike yourself i found CTD not too bad apart from the usual issues a few days of hiccups a bit of pain when taking the cyc and the ramblings on the dex. Oh ! And the bowel movement (or lack of it) . I never lost my…[Read more]

Hi Denise

I had 4 cycles of CTD and after taking the first course( a day after each cyclophosphamide intake) had severe rib and back pain. I was told by the consultant this was a good sign it was working on the plasma cells in the bone. I have a plasmacytoma on the 5th rib.The pain eased off with each cycle to the point i had no issues on cycle 3…[Read more]

Andy,

Well done on your third anniversary. It must be the drink and Greek holidays. here’s hoping for many more.

Stanley

Hi Graeme,

Sorry not to reply to your post not been on for a while. I have just completed SCT. I was in for 18days home for three and then back in for three days with a simple rhino infection. The most important thing for me was free internet to access television via ipad. As Rebecca has said oral hygiene with the support of the mouthwash is…[Read more]

Hi all,

This disease is a real bummer. Tough SCT 20 days home Friday, temperature 38.1 Monday night back in at NHS pleasure. Seems like a little more solitary  for me. It is here to test us ah! Well! Enough ramblings from me.

best wishes to all,

Stanley

Eve,

So sorry to here Slim has passed away. The bravery shown by you both via you comments and especially Slim’s determination to do it his way with your support should inspire many on this site.My thoughts are with you at this very sad time.

Stanley