Hi Susannah
My husband had had cdt an sct followed in short time by velcade and finally Revlamid. The latter two stopped working after 4 cycles. We discussed Bendamustine but it was decided that as it is very much like melphalan that they would give him a large dose then another when he would have a further sct. He is feeling the effects now of…[Read more]

Hi
The hospital is 7and 1/2 miles away so only a 20 minute drive in heavy traffic. The dogs well we have three labradors6 9 and nearly 13 yrs so cant really ask anyone to have responsibility for them. Fortunatly we have a massive dog flap on the garage wall so they can get out into the garden when they need to. The walking of them is actually…[Read more]

Hi all
Peter is proper poorly. His cough and throat are slightly better. His breathing is laboured and raspy. He now has dreadful diaroheah
He will remain there until Monday at least. They finaly introduced reverse barrier nursing today. Apparently no one who booked him into the ENT ward bothered to tell the sister he was neutropenic. He is…[Read more]

I have seen that Dr almost every day in a corridor in the past two weeks and she looks away whenever she sees me………she should be hanging her head in shame. If she had acted sooner Peter could have been treated long before he deteriorated

Before Peter was diagnosed with MM he was attending the renal unit for kidney failure. Every week he had blood and urine tests and one week after he had had an xray for a back pain which showed his 1st 2 crushed vertibrae his blood results taken the previous week showed raised calcium level. She said cant understand why you should have a calcium…[Read more]

Well done that man. I love to hear of success stories and I am sure it is in no small part due to your encouragement Mari. Hearing of someones achievement with mm is just what we need.
At any time of the journey there is doubt, but your news blows it away.
Love Min

Hi Bridget,
The 'mac' nurse Peter had simply wrote the prescriptions herself, no reference to the Dr at all, other than to send him a copy of of the script.
I am currently in two minds wether to contact her again after over a year, as peter was admitted to hospital today and I just felt she would have smoothed things out to make it easier,…[Read more]

Hi Angelina,
I am so very pleased to hear that John is in agreement with you, I doubt if your sister in law would be able to put herself in your shoes, otherwise she would not be so negative.
For my part, I am not in your situation but about 4yrs ago I bought a gold backed notebook of the a5 size and started to recount some of my own memories…[Read more]

Brilliant news Colpot and long may it continue.
Peters venture into Revlamid started out well then sadly stopped after 4th cycle. But life goes on. It never fails to amaze me how everyone responds differently to these drugs.
Just goes to show we are all different in every way ,under the skin too.
Min

Dear Dai
I am so very pleased for both you and Janet, what a blessed relief it must be. PN well you can put up with that for a very short while, and it will all get right.
As long as you can still plonk your fingers on the keyboard you can continue to amuse bemuse and abuse us. Just kidding about the abuse!
I am not surprises your in your bed,…[Read more]

Hello Gill and Steven,
I think I know just how Steven feels as Peters mega melphalan is now kicking in with all the dreadful side effects.
I sincerely hope he starts to pick up soon and you can get off to France and recuperate.
Before you go ask you medical staff for a referral to a pain specialist who can get Stevens pain under control. I…[Read more]

Oh Angelina,
What a dreadful hand life has dealt you and John, and all the many other people on here who have a loved one with MM. Its particularly poignant when young children are involved.
They can be very matter of fact and I am sure they will agree with what you plan. They are your future and they are what matters. Go ahead and do it and…[Read more]

Hi Bridget it was the 1st drug for his mm he was prescribed by a pain specialist nurse, and he could not get away with it. He prefers mst 10 mg or 20 mg and tramadol combined. He hasn't left his bed all day and hasn't had any…Says if he is not standing up he doesn't need it… Might just tie him to the bed now!!!
Hope you find something that…[Read more]

Hello Jo,
It comes from having been a policewoman and writing statements! Old habits die hard.
As for Peter he is sleeping a lot, as eve suggests probably has acid reflux. Feels like sh*** lost loads of weight. Weak as a kitten …. Cant interest him in most food due to the indigestion thing, although he is hungry. He had no adverse side…[Read more]

Hi Heath,
I was really interested in your post, and it has left me needing to ask more questions of the healthcare professionals. Before my husband started the treatment he is currently on we were called in by the consultant who told us Peter had plasma cells in his blood. I did not understand what this meant and when asked I was told it was…[Read more]

Hi Jane and welcome,
Im a carer for Peter who is currently taking Thalidomide for the second time after break for a transplant and velcade and revlamide. It worked wonderfully the 1st time he was on it as a 1st line treatment along with dex.At that time it was discovered that he had crushed vertebrae too causing the hunched back or kyphosis as…[Read more]

Eve when all else fails, buy some suppositories from the chemist. If they fail too see the Dr!
They are just glycerin and something or other but they worked on Peter after a mammoth 4 days and lots of pain.
Love MIn

Hi Norman
Try this one… http://www.insurancewith.com
. I used it in April and got a quote down to £130 for both of us to Cyprus from nearly two thousand with other companies. Peter was on Revlamid at the time. They call it a Maintenance therapy drug for insurance purposes!
The woman who established the company had breast cancer and wanted a…[Read more]