cupcake70 replied to the topic life after the transplant in the forum Under 50s 9 years, 3 months ago
hi robbojnn – good days are now getting more but still have odd days,i have next consultant appointment end of august and hoping pp levels haven’t gone up again,not on maintainance so I guess that’s a good thing maybe!! I know this time I will be asking lots of more questions that I have before so that I can get the facts or figures straight in…[Read more]
cupcake70 replied to the topic life after the transplant in the forum Under 50s 9 years, 4 months ago
I always feel better once I have been on this forum,it helps to know that I am not alone in how I feel.So much of what has been said rings so true.I was diagnosed in 2014 and had sct same year and my pp levels are very low but are on the up,i had very good result immediately after sct,complete remission till may this year.I was of a very positive…[Read more]
cupcake70 replied to the topic Getting to the scary bit now!! in the forum Newcomers 9 years, 5 months ago
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…[Read more]
cupcake70 replied to the topic Getting to the scary bit now!! in the forum Newcomers 9 years, 5 months ago
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…[Read more]
cupcake70 replied to the topic Getting to the scary bit now!! in the forum Newcomers 9 years, 8 months ago
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
cupcake70 replied to the topic Getting to the scary bit now!! in the forum Newcomers 9 years, 8 months ago
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…[Read more]
cupcake70 replied to the topic Getting to the scary bit now!! in the forum Newcomers 10 years ago
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…[Read more]
cupcake70 replied to the topic Getting to the scary bit now!! in the forum Newcomers 10 years ago
Hi Chris,
With all these kind words and encouragement how can I not stay positive,i have a feeling i’ll be ok and hubbie wants to take me away next summer for our wedding anniversary so I have to get through it and stay well :).
Take care
Mandy x
cupcake70 replied to the topic Getting to the scary bit now!! in the forum Newcomers 10 years ago
Hi Tony ,
It’s been a good start,first part of the sct process out of the way yesterday,like yourself not looking forward to long stay in isolation but I plan to take things in to occupy myself.Family and friends have threatened to visit me if they can while i’m there!:)
Regards
Mandy x
cupcake70 replied to the topic Getting to the scary bit now!! in the forum Newcomers 10 years ago
Hi Rebecca
The cyclo infusion went ahead as planned,thank god.All Seems to be going ok at moment and harvest is due to go ahead about a week from now.I am so glad I joined the forum,such nice and people and very encouraging words.My family have been brilliant but its just so nice to speak to people the have gone/ or aregoing through this…[Read more]
cupcake70 replied to the topic Getting to the scary bit now!! in the forum Newcomers 10 years ago
Hi Karen,
In the end throat seemed sort itself out and the iv cxclophosmide went ahead as planned,next step harvest in just over weeks time,have the joys of the gcsf injections to look forward after today,touch wood all going to plan so far. Glad to hear your well,long may it continue. Hope to speak to you again soon.
Take care
Mandy x
Kazzam2 and cupcake70 are now friends 10 years ago
cupcake70 replied to the topic Getting to the scary bit now!! in the forum Newcomers 10 years ago
Hi Mavis,
Thanks for the kind words,its nice to know there are others that understand the journey we all take with this. Feeling more positive this morning,crossing my fingers that everything can go ahead as planned .Thanks again
Mandy x
cupcake70 replied to the topic Getting to the scary bit now!! in the forum Newcomers 10 years, 1 month ago
Hi Mike
Thanks for the reply,have to report to day unit tomorrow as staying in their hostel next to hospital as live a fair distance from it and have to be there early morning.I haven’t spoken to anyone about the throat,i am drinking plenty of fluids and taking throat lozengers and hoping it will do the trick but I am going to mention it…[Read more]
cupcake70 started the topic Getting to the scary bit now!! in the forum Newcomers 10 years, 1 month ago
Hi , My name is Mandy .I am a 44 yr old mum of one from Essex. I was diagnosed with Multiple Mylemona in March this year after a routine blood test showed raised protein levels,referred to specialist at Queens Hospital in Romford,Essex who confirmed MM and have lesions on hips,upper arms/shoulder area and skull. Started treatment almost…[Read more]