[cupcake70Participant]

Hi Ian,

Small world :).

Thanks so much for the info,its put a lot of worries that were coming to the fore at rest and I have copied it so I can print off and show to hubbie,i know it will really help him.

I didn’t go to the ward when I was there last just the day unit so I guess it will single room maybe when I go in for the final bit.

it so nice to finally be able to chat to someone whos been through it so recently.

Again thanks so much for the info

Keep well
Mandy

[iangParticipant]

Hi Mandy

Thank you for your kind comments.

The schedule I was sent for my admission said I would be admitted to one of three wards (4A, 5A or Bodley Scott 1) dependent on bed availability on the day. I was admitted to Bodley Scott 1. That’s the ward that was due to move. I don’t know anything about the other two, I haven’t seen them.

Time seems to drag while you’re in there, but before you know it you’re getting ready to be discharged. Once you’re out you’re still on a few drugs, but no chemo, which is great. Then it’s fingers crossed you’ll be in remission for a nice long time.

Good luck and take care

Ian

[cupcake70Participant]

Hi Ian,

Saw your recent post in which you mentioned little old me,bless you for your concern.

I have just had my 100 day appointment at barts and at the moment have been told am in full remission.

They journey through sct was ok,ended up being in for 3 weeks and only side affects were bad stomach and bad mouth but that was it,your suggestions and insight into what might happen really did help.

Am pretty much “back to normal”,have slight achy bones/muscles on and off ,have zometa infusions every month and gets worse for a couple of days after but other than that not to bad,still have odd down days but have been offered counselling which I have said yes too,there is certain things about this journey that I feel I need to speak to someone about ( someone that’s not family).

Am back to work next week ,3 days a week initially so hoping that will go ok.

Hope your doing ok and again thanks ,my the journey easier

mandy

 

[iangParticipant]

Hello Mandy

Thank you for the update. It’s brilliant that you’re in complete remission, you must be delighted. I hope you manage to conquer the occasional down days. I guess we all have moments when we’re a bit apprehensive about what the future might hold.

I’m at day 160. Sadly my paraprotein level was higher after the transplant than it was before, and it’s been steadily drifting higher, which just goes to show transplants don’t always work. I think I’m effectively left with the partial remission I got from the initial treatments and it’s as though the SCT never happened. The high dose Melphalan obviously wiped out my stem cells but left my myeloma cells mostly or completely untouched. Still, looking on the bright side, I’ve been treatment-free (since discharge) for nearly 5 months and counting, and I’m feeling fit and well.

I was in the Wednesday clinic at Barts today, my appointments are four-weekly. Are you still being seen at Barts or are you back at Queens? (Edit: oops – you answered this – you said you’ve just been seen at Barts. I was asked at my second clinic appointment whether I wanted to continue to be seen at Barts, be handed back to my local hospital, or a mixture of the two.)

Best wishes.

Ian

[cupcake70Participant]

Hi Ian,

Sorry to hear that,glad to see your still staying positive though 🙂

I am back at barts in may,they want to keep an eye on me ,as they put it.

Guess until then its onwards and upwards

Take care

Mandy

[cupcake70Participant]

hi ian

had barts appointment,they don’t want to see me till October but just been to queens and been told pp is at 4,so I am so anxious and confused now,does that mean it hasn’t worked so good,am I in partial remission now.The consultant at queens says as long as it doesn’t keep going up shes not over worried and wants to see my in three months,little bit scared again ,not sure how I feel .Trying to stay positive but all sorts going through my head now 🙁

[kaychappersParticipant]

Hi cupcake
I have not been on this forum for a few years and I believe I was meant to come on here tonight and read your posts. I was diagnosed with smouldering myeloma in 2009 at the age of 44 at Queens. I had treatment in 2011 followed by SCT then more treatment in 2014 and my 2nd SCT in 2014 both in Barts. I was at Barts today and my PP is 11 which is amazing for me as they were never lower than 18. Unfortunately my blood counts have not recovered too well but I remain positive and do not have to go back to Barts until November so they can’t be too worried about me and I get fantastic treatment at queens who keep an eye on me with weekly blood tests. At a level of 4 that sounds amazing to me and I’m so pleased for you. I have nothing but praise for the staff at Queens and Barts. I think personally that when I came to terms that I have to live with Myeloma and not fight it it made it so much easier. It’s been quite a journey in the last 6 years but the amount of new treatment they are bringing out all the time, I do believe we are the lucky ones

Stay well and positive

Kay x

[cupcake70Participant]

Hi Kay

I guess from what you wrote your a local lady.Thanks for your kind words.I do try and stay positive 99 % of the time,still have the odd days though.Its been harder because there doesn’t seem to be many people local to me that have this awful thing in their lives.I have made a friend with a guy at queens who is at the start of his journey and his girlfriend keeps in contact.I have looked online for support groups in the area but the nearest one is at uch in London,would be so good to have someone else to talk too.

Seems like I might be worrying when I don’t need to.

Hope to be able to chat to you again.If you would like to stay in contact I can send you my email address via a private message if that’s even possible.

Take care and stay strong

mandy x

[kaychappersParticipant]

Hi Mandy
I’m really sorry I don’t think my post posted last week. Yes I am local in Brentwood.. Please feel free to email me. I’m not sure how privacy works. It would be nice to chat. It’s not an illness that you hear about much so at times you can feel lonely with your own thoughts.

Kay x

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