I would certainly mention your pains and aches to your specialist. My myeloma was diagnosed in March 2010. For approximately 9 months prior to the diagnosis, I would experience some strange aches pains in my hip, under my rib cage, around my kidneys and in my back. The pains would come and go. I just thought that I had strained certain parts…[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]

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]

Oops – accidentally posted before I completed the message.

Did they use cannulas in your arms? M has an apheresis line (like a Hickman) in his chest now and it was put in specifically for the purpose of harvesting the stem cells. Until last Weds he had a picc line, but that’s no good for a harvest, so they interrupted his 4-day chemo (half bags…[Read more]

Thanks Mike

Well done on a successful and speedy harvest. We’re going to the JR too, so it’s extra helpful to know what to expect there. Do we need to take food and drink, or will they provide my husband with something? It’s different wherever you go. If you sit down for more than a couple of minutes in the Day Therapy Centre in Swindon, where he…[Read more]

Thanks very much David and Rebecca,

I think I’m more worried about the journey than the harvest – but of course I only have to drive! The roads aren’t that great, so I’m glad we can take it steadily.

My husband has had GCSF before, so has had some experience of the aches and pains. No-one warned him beforehand  and he was quite worried that he…[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]

Hi Eve
I’m sorry not to reply sooner, how is Slim taking all this palliative care? I’m guessing he’s still trying to tough it all out still? Are you managing to handle it all ok? It cannot be easy for you.
I’m ok. Relapsing again and this time steroids are not working well. I feel well though but my light chains are bouncing down then up rapidly…[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 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]

Hi Nikki!

I’m sorry you have all this to deal with. Just a thought – have you been allocated a key worker? It’s usually a clinical nurse specialist or someone with a similar role? If you haven’t, do ask. It might be worth you sitting down with someone like that who can explain things to you and answer your questions. It is really hard to…[Read more]

Sorry to hear this, Maureen,

I can sense your frustration. Don’t undo the good your lovely holiday has done, though.

Velcade didn’t work for Mark either, even with cyclophosphamide and prednisolone, then dex, and we both felt really disappointed that he had gone through 5 cycles of it with no results, and light chains a bit higher then when he…[Read more]

Hi Deborah,

You are about a month ahead of my husband, I think. He’s just gone in today to start his 3rd cycle of DT-PACE on Monday, with stem cell harvest booked for 21-22 July, all being well.

I’ve been saying to him that he is better prepared for the transplant now that he has had the experience of feeling grotty on DT-PACE, which has hit him…[Read more]