Hi Glen
My name is Eve I know Clatterbridge ,good hospital for Cancer,going back years live in the south now.

It is a bit of a shock to the system,CTD is the first chemo ,never heard of PAD but there again my husband is on Myeloma X1 trials so next chemo was Velcade,but it is a bit of a post code lottery.My hubby is still trying to get…[Read more]

Hello Kay
so sorry about your PP levels lets hope its just a blip good luck with your scan on friday I will be thinking about you with fingers crossed
Lots of love and (((hugs)) Jo

Hi Kay
Sorry to hear you think its,back again,just wishing you good luck for tomorrow,Slims in the same boat except he has never had remission,tomorrow we find out if the second lot of chemo Velcade has worked,I try not to think to far ahead,as we have been here before.
Hope all goes well Kay,best wishers Eve

Hi Nicola
I know its hard but may be your dad is better off at home,you do need that home visit to asses how much help is needed,you do not say if he has a carer who can provide a good level of care.

I know what hospitals are like,the nurses just do not have the time,My husband spent 22 days in hospital 9 in itu,I spent 12 hours a day there…[Read more]

Hello Pilgrim

I think you have done the right thing finding out as much as you can,Myeloma is sometimes very hard to diagnose,and often gets over looked as a cause for some ones illness,at least you have a good GP who has taken note of what you have said and acted on it.Many people get over looked until there bones start breaking then the…[Read more]

Hi Nicola
Sorry you had to join this site,as for help no one would be able to help with so little information,may i suggest you ring Ellen first thing tomorrow.

Why have they sent you father out with out.with out some form of back up,How an earth are you coping ,what medication is your dad on,lots of questions,please ring Ellen, Eve

Hi Nicola so sorry your dad is having such an awful time, it must be so hard for you Its little wonder he is feeling down after having been through so much so try not to take it too much to heart when he talks of dying The doctors wouldnt put him through chemo if they didnt think he had a fighting chance. Did he have radiotherapy recently? That…[Read more]

Hi Kay,

Good luck with the PET scan on Friday… here's hoping that there is no sign of active disease and that your PP's are just playing up a bit and will start settling down soon. As a light chain bod I don't fully appreciate the intricacies of PP's but while the trend is showing a steady increase the increases themselves do not seem very…[Read more]

Thank you all for your lovely replies and thoughts. What a pain Myeloma is. So great to have the support to share with. Kay x

Hi Min and Stuart it is reassuring to know there are people to help at our hospitals Those forms are such a nightmare I break out in a sweat even though my job entailed helping others fill out benefit forms , just cant do my own On the radio today there was a discussion on the proposed reforms to disability benefits , made me so angry there was…[Read more]

Hi Kay so sorry to hear your sct results are disappointing , I dont have any personal experience that would help but I am sending all the positive vibes I can your way Are you on Zometa or Parmidronate? One of these may help your bone pain which a lot of us have and those pains may not mean anything more sinister is happening just a rather…[Read more]

Hi Heather welcome to our merry band ! Good to hear your treatment has gone well so far and I remember that lost feeling after my sct 4 years ago It does get better though but remember you have been through a huge physical trauma as well as having to cope with the news you have myeloma. I was diagnosed 5 years ago after a year of agonising back…[Read more]

Hi Heather

A warm welcome to the site:-D I had my Transplant in Dec 2009 so I make that just over 2 years Post Transplant?

Diagnosed Jan 2009 went on 5 cycles of CDT then stem Transplant dec 09 but went on sick may 09 for a year back at work (Lidutiesie's) may 2010, just started doing a little bit of my old job (forklift driver/Pendant…[Read more]

Hi Michelle I am so sorry that you and your husband are at the stage that you are especially the young age that he is as well (although whatever age this terrible disease does not care and is hard and awful for all concerned). I agree with the others, always make sure you say how much you love the person and try to keep positive. There are other…[Read more]

Hi Chris

Well am pleased you are getting the posts 🙂

After reading your nutro pp and stuff am none the wiser Lol shamed to say I have left all that stuff to My Dr's so far and it works for me 🙂

Keep on keeping strong and its grewat that the Family Nag you when you do too much.

Catcha Lata

Tom "Onwards and Upwards"

Hi Chris
Just thought I would pop on and see how you are doing? Hope these are not going into your "Trash Can" Oh ? if they are you wont be able to read this one then will (am a silly billy)

Tom 🙂

Hi Mari I am glad you had a good christmas. Dex is such a strange drug and it amazes me how differently we all react to it . I did get lots of bloating and water retention too and now always take ferusimide The other unfortunate side-effect for me is excessive wind , very embarassing ! I think the lethargy is something you are stuck with due to…[Read more]

Dear Mari
Glad to hear your Christmas was good,Slim slept through most of Christmas,but it was still better than last year,wish I could get back into reading,to be able to stop thinking about this myeloma.

No Slim did not have sub cut,when I asked about it,was told it was effecting some people,also has not come to our hospital yet!!!!!
Its…[Read more]