Hi Maureen

Thanks for that, yes I am doing pretty good on it the sleep I think has come back to me and near next to normal pattern so that’s good.
Am sure Ian will cope with the Velcade and it’s good to get away before treatment starts pewee went away before I started treatment all booked I a weekend lol.

Good luck to you two and enjoy your…[Read more]

June it must have been terrible to get a late diagnoses. When the rash appeared Frank phoned our hospital day unit and described the symptoms. Registrar rang him back and said it sounded like shingles but to see his dr who said right away that it was shingles. He has been lucky in a way as the spots have all scabbed over. He has awful back pain…[Read more]

Hi Frances
I take it the doctor Came to that conclusion after MRI,plus full body x ray!!

My husband has had a resent pain in shoulder unable to lift his arm in and out of clothes,did have fully body x ray,no change,told not every pain is MM,since then he has had a MRI Scan that can track new Myeloma,As you can guess the pain was new Myeloma…[Read more]

Hi every one
I am now on second cycle and just done third week of that cycle and kast week I lost sleep on Monday as normal but after that I could sleep for England ? Fall asleep on sofa wake up and go to bed it was wayyy too easy to sleep, so let’s see how this week falls.
Went to Scunthorpe General today and talked for a few seconds to a couple…[Read more]

Ji Jeff

This site is about helping one another,and I know sometimes I come a cross very blunt and straight to the point,but no offence is intended,I can just tell you we have been there so know exactly how you feel,and not to give up!!!!
Lots of people on here have and still do help me,I suppose in many ways I have learnt to ride the roller…[Read more]

Hi Vikki

Great to hear from you hope all is well with Colin. I read Ali’s post that you have booked a holiday. When and where? You might have mentioned it before but I have a head like a sieve. Wherever it is I hope you have a great time

Shingles have been awful but today’s he’s been on good form. He took a shower and it didn’t hurt and he says…[Read more]

Thanks Vicki,

We had a shock in December when we found out Phil’s PP had been rising since August but we are getting used(?) to it now. We were told in July 2013 it was at zero and we had just assumed it was still there but it turns out Phil only maintained the zero for one month! At the moment he is still on a watch and wait plan, he has a…[Read more]

Hi Eve how long since you have seen the family. I’m sure You are both excited. Shingles are awful. He says the pain from the spots has eased a bit but back pain is terrible. (He had been free of it form months)

We have a cruise booked for 8 May. Don’t like booking that far ahead but it gives Frank something to look forward to.

Long May Slims…[Read more]

Hi Jean

She is coming the start of NZ Easter break with Kiwi kids,husband arriving on business a couple of weeks late,and yes something to look forward to,the whole family back together again for a short time.
So all good at the moment!!
Sorry to hear about the dreaded shingles!! So so painful even when spots are gone,Slim has been on the anti…[Read more]

Hi Eve

So glad to read of your news. I hope it goes on for a long time. When does your daughter arrive. Something to look forward to

Best wishes to you both
Love Jean x

Hi Everyone

Thought as I am on would keep you up to date,

Slim has had his first month of treatment,after being told there was nothing they could do!!

Well we have had a good month,the weather in are little corner of the world has helped,most days out and about,lovely to see the daffodils in bloom,the sunshine helps even thou the south wind is…[Read more]

Hi Jeff

I do not know much about your present state to comment on it,feeling if you have been abandoned ,I can understand,your PP are going up,but your tiredness is I would say because of your bloods!!!,even if they have given up on you,you are entitled to have a quality of life plus may be second opinion. I can only tell you my husbands…[Read more]

Hi Jan

Thanks for getting back. Frank has been lucky as far as infections go. He’s had the odd cole, which like you takes him about 6 weeks to get over. But no infections, thank God. Shingles has been the worse. I record his bloods in the Myeloma diary and they are all within range. He I’d have low potassium and phosphates but they are now…[Read more]

Hi San thanks these shingles certainly get around. Frank has had the rib pain for some months. Long before shingles. I asked our doctor if consultant had ordered MRI scan as she said she would but she hasn’t. Seeing her Wednesday so will investigate.

Jan do light chains alway increase with an attack of shingles? Franks consultant does not like…[Read more]

Hi Helen

Glad you are eventually getting over the pain. I asked our doctor and he said the pain can last months. Frank has just got up and he said he “thinks” the pain is a bit easier. He says he is now suffering from “sleepy sickness”. He’s gone from 5 hours sleep a night (always been his sleep pattern) to nodding off a at the drop of a hat

Any…[Read more]

Hi all

I contacted doctors and he checked for me re SCT and thyroid doctor app. The appointment for thyroid doctor was requested on 9 January. Doctor did tell me that doctor concerned had a long waiting list. I asked him to check the MRI request and was told there wasn’t one. He said he would phone hospital and find out

Thanks all
Jean x

It sounds a bit like a situation that has developed which is not in the best interest of patient or hospital !!!

Instead of possible making the situation a big issue,why not go to the patient service that is in the hospital PALS????
My understanding is you want the blood results that you are entitled to for your own peace of mind ????

Hi Everyone

I do not usually look at newcomers postings,mainly because after 3 years being a carer of someone with Myeloma,things have advanced so much concerning treatment,but just reading this post made my realise that the emotional side never changes,but I do think after going through the emotions of shock grief,plus usual problems,things do…[Read more]

Hi Terry and David

Thank you both for the information,it’s worth making a note of!!,because of the fact of it only lasting 24 hrs in the body,so it,s important that it is taken everyday at the same time,you assume there is no build up of the drug in the body.
Why should it be ok with Velcade but not Revilimid ?????
I also think people assume if…[Read more]

Hi Pete

Yep! He has it there as well. How long does it last. Doctor told him that once the bolsters break he will no longer be contagious. He seems a little brighter today. The ibrofrem seems to help him. The pharmacist today told him not to put any cream or lotion on as the applying of it could aggrivate the rash. I do feel helpless as there is…[Read more]