Hi Andy

They say opposites attract !!!!!! I took a instant dislike to Slims views in 1981 !!!!!
Still together all these years,he makes me laugh!!! That’s my excuse.
Slim is a very determined character,in a very quiet way,when he says something like do not let them put DNR on my files,he means it,and expects me to honour his wishers no matter…[Read more]

Hello Sarah

My heart goes out to you,yet I will find myself in the same position soon although by a different route.

I have not been on this site very much,mainly some one said this site is about hope and it is,but there’s no hope left for you and me,I have a daughter older than Mark,but I could not imagine what it would be like to loose…[Read more]

Hi Maureen

You did a good thing by getting a second opinion ,life’s to short to waste time with stroppy consultants!!!

If Andy can get 22 cycles plus some people get a lot more then it’s a good thing,cyclophosphamide knocks the cells but at a price???? Dex seems to enhance the other drugs like Revilimid

Good luck on your journey. Love Eve

Hi Fiona

Two years is a long time in the Myeloma Bubble,time for new drugs to come on and advancement on ideas,never forget everything is just an opinion!!!!

The say you have to put your trust in someone,put your trust in each other Philip to make the most of what every lies ahead,and never never give in,and you Fiona to make sure every day is…[Read more]

Hi Don

Like the others I admire your style. So sorry you have so much to cope with.

I do believe attitude counts for a lot, so if anyone can get to 85 it must be you!

All the very best for the surgery. I do hope it goes well.

All best wishes.

Mavis

Dear Steve.
Im afraid there is not a lot to go on, to give you advice.The ultrasound is probably to scan the kidneys to see if there is anything to explain reduced kidney function(small kidneys or large kidneys) .
Leg pain may or may not be relevant .
More tests for more information …and then appropraite hospital referral?
Mike

Hello Stuart

Just popped in on Fiona,s post to say hello! We met at the Marsden by the car parking machine that eats money !!! Lol

Slim is now on Palliative care,the Velcade worked again,but blocked arteries were the on going problem,which resulted in other issues.

Sorry for taking over your post Fiona,hope is a wonderful thing just keep…[Read more]

Hi Maureen

You are right to get a second opinion ,you do not need a stroppy doctor,Slim has always had the cyclophosphamide and Dex combination,you need a hospital that is able to tweek the treatment to suit the person.
Better to get a second opinion in the early days,I would look up to find out more about the hospital and consultant,you do need…[Read more]

Hi Helen

Good to know you are doing fairly ok,may be pomilidomyde will be the one for you!!!
Slim did well using Velcade second time round,knocked to 10 percent on 3 cycles,the platelets and artery blockages were the problems.

Once he realised what was going on,had an impact,but just wanted to get home,did not want it to be this way,but the…[Read more]

Fiona

You have had one of the best experts in Prof Morgan,Slim had Faith Davies,but sadly both going to America in July!!

Just sent an E Mail to Sharon thanking the unit for all there support.

Andy was on Revilimid for 22 cycles ,Slim only got 4 cycles as it knocks bloods to nothing,but Andy is the better one to consult.

I think the…[Read more]

Hi Fiona

Children never say much,and I personally think we do not give them enough credit as often they know what is going on,but do not want to upset mum and dad.

Matty,my grandchild died two years ago and his sister is still going through therapy,it’s not an unmentionable subject,but both siblings have problems on a day to. Day basis.

Looking…[Read more]

Hi Scott

Sorry I can’t help you with your specific concerns and I guess few on here have had an Allo transplant. Have you found Jet’s Blog? She gives a very graphic account of her Allo history.

A all best wishes.

Mavis

Hi Deborah

Your SCT should be over now. Love and prayers for a gentle landing and a long remission.

Mavis x

Hi Both of you

So good to hear a good news tale. Long may it last. While it does wrench as much out of every good day.

Best wishes.

Mavis

Hi Wendy

Very cute.

Keep good and may you smoulder for a lot longer yet.

Very best wishes.

Mavis

Hi Robbo

Sorry to have to welcome you to this a Forum. Yes, there is such a lot to take in with a diagnosis of Myeloma. It’s not helped by each case being different. However, knowledge is everything so learn as much as you can from the a web Site and ask to get the MUZk Magazine if you don’t already.

You do have the right attitude. I believe…[Read more]

Hi Loopy

Welcome from me too. Sorry your husband has had such a hard time. I was treated with CDT (admittedly not CDTa) and got into complete remission after six rounds. I have not gone down the route of SCT and have been fortunate thus far even though, like your husband, my bones are shot through with lesions.

Mobility does improve. It is…[Read more]

Hi Fiona

It does sound if Philip is high risk,they use this term when treatment works well,but starts up again as soon as treatment is finished,which does not give you much time free of treatment,

We all hope for remission,and not to be on pills all the time,all of this is a gamble at choosing the right drugs,as you know in Slims case it did not…[Read more]

Hi Helen

I sent an E mail to you!,So my question is are you alright????,or just making the most of this beautiful weather.

Slim has had another spell in hospital,he comes home today!!!at peace with myself,would have liked ,the hospital to forget about ticking so many boxes and consider the patient and carer before they feel the need to send in…[Read more]

Hi

Myeloma has a major effect on carers,it is wise to know what to expect as the years pass and learn to come to terms with it,as the years go by you do learn to accept and come to terms with your husbands illness,so try not to look to far ahead as nature will take it’s course and as time goes by acceptance and a form of peace follows.
On a more…[Read more]