Hi Craig its great to hear things are looking up for Etta now , especially when those pesky numbers drop really low!! Eve has already given you good advice about getting some helpand I cant add to that except to say make sure you insist on help , you are more than entitled to it!! If you can keep working I am sure it will help you both in all sort…[Read more]

Hi Bridget
The very best of luck to you when it starts, I hope it doesnt have too many bad side effects and you can get back to living normaly again. Take CAre
Love
MIn

PS Michael has always found Dex to be a nightmare, but it seems to help with
the fatigue xx

Hi Bridget Im pleased a decision has been made and your starting treatment, your post has jogged my memory (whats left of it) Michael is on warfarin, but thats because hes already had 2 dvts, and the other thing about the bloods not recovering very well, Michaels started on GCSF injections twice a week

I had to smile when i read the piece…[Read more]

Hi Eve and Sue well got it sorted today I will be starting on Bendamustine, Thalimode and Prednisalone ( just the same as Dex but reccommended with these two drugs) in a weeks time So although I am not on a trial , my consultant believed one of the trials has been stopped due to blood counts not recovering , not sure which trial ) I will be on…[Read more]

Hi Eve Its my husband Michael that has MM, like yourself I have always been very open about what the future might hold. Im the one with all the questions, and I do want honest answers. We have been down the no more treatment road a couple of times (before Velcade and Revlimid were availiable) its a terrible place to be in but we had to deal with…[Read more]

Good luck to you Debs ands well done in advance.
Your post caught my eye because Peter and I used to live in Piddington. and drove thru West Wycombe to get anywhere in particular High Wycome where our daughter was born and Peter was posted in the RAF so it was like a blast from the past seeing it written down.
Hope you dont mind my going off in…[Read more]

H Eve My husband is taking part in the trial, hes on bendamustine thalidomide and dex. He started at the end of July, I did post on here at that time under treatment, i have updated a few times, but as you say there is no one else on this sight at the moment on the trial, so I dont have anyone to compare notes with.I do post if I think if it will…[Read more]

Thank You so much for responding to my request for somewhere to be able to chat without feeling negative an guilty.
Like you Sarah its all a bit too raw at the moment, and my grief like yours is tinged with anger that some people are still drawing breath when my dearly loved husband is not. Peters Father is a typical example of this.
We will…[Read more]

Hi Anna welcome and sorry you have found yourselves members of the mm club. Its great that you are supporting your dad , I am sure he finds it invauable , but it must be tough on you especially with a daughter who has health issue too Please dont feel guilty if you cant always keep his spirits up ,sometimes the down times happen whatever we do !…[Read more]

Hi everyone this post has really been interesting , the differences in our care and hospital resources amazes me in this day and age . I believe we all should have reasonable access to specialist cancer centres to level this out .Recently a consultant at my local hospital was surprised that Ichose to travel to London rather than be treated locally…[Read more]

Hi Sarah
Dont beat yourself up, the IF word is the biggest little word I have encountered .
Peter actualy was on Velcade but it stopped working. I keep asking similar questions about the next best thing but I am slowly coming to understand that we have not a minute longer on this earth than the grand master has planned for us.
The timing…[Read more]

Hi Sharon hopefully you wont have to wait too long before you feel ok again Thats such a long wait for PET scan though, mind you I have never had one I dont think UCH has access to PET scanner I wish they did if reports about their accuracy are true! I know what you mean about having to wait for RT I used to despair after getting the district…[Read more]

Hi Craig I am glad Etta is over the worst You two will get through these times as you seem like a very strong partnership, I know I couldnt manage without my husband Just a word of caution though try and make some time for yourself that has nothing to do with myeloma or hospitals as it can take over your life , so try and have some fun too love Bridget x

Hi Sharon thankyou . Its such bliss to have got rid of that awful pain at last !! Now I dont have to feel pressured to go into the hospice for methadone trial either , I really did not want to do that. I hadnt realised until last year , when radiotherapy got rid of the last tumour on my spine, just how precise and effective it was these days ,…[Read more]

Dear Julie
I am so sorry that your mum has lost her battle with this dreadful disease. I hope you take comfort from the fact she was able to achieve her last wish and die at home. May she rest in Peace now she is free of pain and discomfort
Love MIn

I am sad to hear your mum has passed away but at least she was with her family She will always be in your hearts and memories love Bridget x

Hi Gina what a relief for you to know its not her lungs causing the breathlessness Hopefully mum will be feeling a lot brighter today and you can all enjoy the weekend love Bridget x

Good morning everyone a very interesting topic this not sure I can add much except to relay my own experience . From the initial consultation at UCH I have felt they are at the forefront of any new treatments With referwence to their hands being tied by NICE guidelines I have never felt that was the case.When I asked about the Velcade rules on…[Read more]

Well done Nettie brave lady
Min