Hi Teresa,

I did not reply to your first post as I truly did not have the words to describe what I wanted to sayhowever I have been thinking of you as I often do about those on this forum who have lost loved ones. Whilst Peter wonders through your mind Patrick whispers in my ear from time to time especially when I am doing something the wrong…[Read more]

Dear Gill,

I have not posted before as I did not know what to say. I am hoping that the Wizard has managed to control Stephen's pain and he is comfortable at least. It is good that you were are able to give up work and spend time looking after him, preserving his dignity and generally being together which I am positive he appreciates more than…[Read more]

Hi Scott,

Similar to you my late husband Patrick had a very bad time with Velcade. He used Bendamustine 2 years ago for a year before it ceased to make a difference and suffered no side effects at all. You are right in saying that it is not a new drug and therefore has been well-tested.

Best of luck to you
Tina

Hi Jaqui,

My husband Patrick had IgA lambda light chain myeloma and we [i]were[/i] told it was an aggressive form of Myeloma. Patrick was in remission for only 10 months after SCT and unfortunately did not respond to Velcade very well at all. But after Revlimid failed he did have a very good year on Bendamustine which from what I hear on this…[Read more]

Dear Gill,

I am so very sorry to hear of your news, I know what a very difficult time this must be for you both. Following your posts for so long now I know that you will be strong and will cope with everything to come. Stephen's journey may be nearing the end but it's not here yet – so enjoy each others company each day even Stephen's short…[Read more]

Hi All

I may have posted this before but – I have been following the fantastic trials and tribulations of Lonnie Nesseler for many years. He is an American suffering from Myeloma and has come back from the brink on more than one occasion. He has survived an allogenic transplant from an unrelated donor and is currently doing well. A great blog…[Read more]

Dear Carol,

I too lost my dear husband of 34 yrs to Myeloma, 12 months ago. "Will this pain ever go?" I personally agree with David, the pain for somemone you have loved and lost never goes away. Whilst I am now able to talk about Patrick without immediately breaking out in tears the pain I feel seems to have found a place in me to hide…[Read more]

Hi Sue,

So good to hear from you I have been wondering how Michael was doing, I'm so sorry he has been unwell and in hospital – so very draining for you both.
You have no doubt been by Michael's side throughout all his treatments and procedures which from my own experience comforted me as I always wanted to be around if something were to go…[Read more]

Dear Gill,

So sorry to hear the Revlimid failed. Has Stephen been treated with bendamustine or Pomalidomide? Patrick survived almost another two years after the failure of Revlimid on these drugs and the consultant was amazed.

Like Mari, I feel you should do what makes you both happy if that means travelling to France then get going and…[Read more]

Hi Dai,

Amatriptyline is a widely used drug and has many uses. I suffered very badly with muscle and nerve pain and was given amatriptyline many years ago as a muscle relaxant. Patrick used it in a low dose when he had trouble sleeping and it really helped.
Patrick was also on 185 mg of SR morphine a day backed up with Oramorph, I never…[Read more]

Dear Michelle,

Strength and love to you Michelle, God Bless you Phil

God saw you getting tired,
When a cure was not to be
So he wrapped his arms around you
And whispered ?come to me?

You didn?t deserve what you went through,
So he gave you a long-earnt rest
God?s garden must be beautiful
He only takes the best

When I saw you…[Read more]

Hi Sue,

I find it hard to believe that it's the drug company who is witholding the Pomalidomide. If it's a matter of cost that will be down to the Health Trust covering your area – and not fitting the criteria? what is that all about? – have they explained this to you?
Patrick recieved Pomalidomide on compassionate grounds, as you would…[Read more]

Dear Jo,

So very sorry to hear of the loss of your father I am sure he put up a brave fight against this B * disease. I lost my husband last May, we were together 34 years and I know how hard it will be for your mother. It will take some time to just remember the good times- but you will, believe me. As Bridget says stay strong and you will get…[Read more]

Hi Sue,

My email was down for a bit but is up and running now. Hope to speak soon.

Tina x

Hi Penny,

My husband had a SCT in Dec 2007 and much like Elizabeth sailed through and did not suffer with either sore throat and diarrohea. His main suffering was due to boredom!! Patrick was up and running in about four weeks.
Best wishes to you

Tina

Hi Sue,

Great to hear you don't have to go through with Chemo – brilliant news. If you ever want to private email me don't hesitate – pa.davis@virgin.net

Keep on harrassing the medics for treatment for Michael I am sure something will come along soon. I know how draining it ca be but in the meantime stay strong and look after…[Read more]

Oh Sue I was really worried about you both, thankyou for taking the trouble to let us know how you both are doing. What an awful few months you have been having although not just the last few months I know. Have you asked about Pomalidomide for Michael or is he too unwell at the moment for any treatment?
What about you? do you have a treatment…[Read more]

Hi Tom,

I love your song choice – have you heard the Platters version?

Tina

Dear Chrissie,

The feeling of anger is normal and I am certain that it will pass, having experienced the same emotion for many months after my husband died. Pneumonia is a very common cause of death in MM patients, it develops very quickly so David may well have had the beginnings of it on the Wednesday but so insignificant that the x ray…[Read more]