[stanley-1960Participant]

Hi Eve,

Glad you took the time to post and update us all on the next chapter of your life. So pleased your managing to live your life with so much positivity. Im sure Slim would be very proud of you.

Best regards,

Stanley

[stanley-1960Participant]

Vicki ,

My sincere sympathy in what must be a traumatic time for you.

In my thoughts,

Stanley

[stanley-1960Participant]

Vicki,

Many congratulations to you and Colin. Sounds like you both had a day to remember.

Best regards,

Stanley

[stanley-1960Participant]

Vicki,

I am so sorry to read of Colin’s response to the latest round of treatment. My sincere thoughts are with you both at this difficult time. Your post has prompted a period of  reflection as a fellow sufferer. May you find the strength you need over the coming weeks and months.

Best regards,

Stanley

[stanley-1960Participant]

Hi Maureen,

I hope Ian is home at the weekend and on the road to recovery. Looking at your comments my journey was very similar. The first period of hospitalisation was 18 days then 2 days home then temperature and rhino infection back in for 5 days then home for good. I lost a lot of weight in hospital and even more in the first few weeks at home (pre chemo 14st 7 lbs 2weeks after being home from SCT 11st 10lbs).I am now back to over 14st feeling better than for a long time, walk long distances every day 15km minimum and have just got back from Rome where i dragged my wife round every church and attraction for days on end in 35 degree heat(no taxi’s for me lol). I am 10 months post, drug free and very fortunate. I sincerely hope Ian’s journey follows a similar path. Please pass on my thoughts.

Best regards to you both,

Stanley

[stanley-1960Participant]

Hi Andy,

Glad your enjoying yourself and still having a few beers. I decided to take a leaf out of your book and resume my love affair with alcohol. Surprisingly the outcome has been very pleasant, so much so i probably overdid it on a visit to Cheltenham races recently. The strange thing about it was i felt as good as ever afterwards with no ill effects at all. I visited my consultant last week confident i’d found the cure but left with the words “stupid boy” ringing in my ears. I’m determined to persevere though lol.

best regards,

Stanley

[stanley-1960Participant]

Hi Maureen,

Ian is finally there for his SCT. I wish him a trouble free passage and the long remission were all after. My SCT is long gone in the memory already,August 2014. For me the focus was always a long drug free period. My thoughts and very best wishes to you both over the coming weeks.

Stanley

[stanley-1960Participant]

Hi Maureen,

I take it all went well with Ian’s harvest. I hope the transplant and high dose process goes as smoothly as possible for Ian. The goal at the end (drug free remission) is that light at the end of the tunnel.

my very best wishes for the near future,

Stanley

[stanley-1960Participant]

Hi all,

Nearly 12 months to the day since my emergency surgery on 4″ plasmacytoma  diagnosis and 6 months post SCT . My consultancy yesterday confirmed no detectable paraprotien and FLC of 10.17 kappa and 7.57 lambda ratio 1.34. I am utterly delighted and feel positive for near future being drug free.

Best wishes to all,

Stanley

[stanley-1960Participant]

Hi, Maureen,

I went into SCT with FLC 104 after 4 courses of CTD. My consultant said that the cyclo priming equivalent of 3 courses of standard treatment 1200mm would sort it out. The only side effect i had was a big red head for a couple of hours (my kids did laugh during the skype phone call) and the weight gain due to the fluids. The plerixafor or trade name Mozobil is a wonderful drug. I had to go in at 23:00hrs for the injection the night before harvesting( they don’t trust you to do it because of the cost) . My final harvest total was 11.2 million one session 6 hours.

I hope Ian has a successful priming session,harvest and SCT with long remission.

All the best,

Stanley

[stanley-1960Participant]

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 say you have a 1% chance per year of developing to full blown myeloma. I unfortunately developed full MM in 2014 and have gone on to have a SCT and am currently in sCR. To quote a phrase used quite often here  i really did lock it away in a cupboard so much so that when i started my MM journey on this website last year i mentioned my MGUS journey started in 2005. When i checked recently with the consultant he provided me with the information stating i started my journey in 2003.This would indicate that MGUS did not dominate my life,living did lol.We are all very different much like this disease and although myeloma has my full attention now i feel very fortunate that in the 11 years previous it was locked away in that cupboard.

I wish you the very best for the future,

Stanley

[stanley-1960Participant]

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 Gabapentin for the pain. The NHS will only give the vaccine to people aged 70 or 78 and 79. If not you can pay privately. As Annette has already said if your immune system is weakened it will not be given. I think Pauline has lasted a long time before contracting it as most will get it much earlier post SCT.Best of luck to Pauline hoping for a speedy recovery.

Stanley.

[stanley-1960Participant]

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

[stanley-1960Participant]

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 vast majority on this site have had chicken pox and the data that shows were all most likely to get shingles if anyone was on a preventative strategy or if they were advised that it was likely to occur.

best regards,

Stanley

[stanley-1960Participant]

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 Friday laid up diagnosed with shingles monday. I diddn’t know guiness could do that to you. I will revert back to the lager in future.Lol.

Best regards,

Stanley

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