Dear Roz

I am sorry I have not posted on your thread before but we have been away.

I just wanted you to know that I am thinking of you and Michael and hoping that he improves enough to come home. It must be hard not to have him at home but his medical team will only be advising what is best.

Love from Gill

Hi Susan

My husband was diagnosed about 2 years ago. His spine was damaged by the mm and he could not walk without the aid of crutches. To get out of a chair or up from bed made him shout out in pain and I thought it would just get worse and worse.

After radiotherapy, chemo, steroids and an SCT Stephen's mobility has improved no end. He now…[Read more]

Hi Gaye,

Yes, Bendamustine definately would not be suitable with your low platelet count. Patrick is having a platelet transfusion nearly every week now and the consultants are leaving the Pomalidomide for as long as possibel as his paraprotein count is good.
We live in Buckinghamshire – hope this helps.

Love

Tina

Hi Bridget,

Very interesting…I wonder what the op could be. Similar to Min, Patrick has five crushed verebrae & two have been "fixed" by vertebroplasty but he too has rcently been suffering with more pain although now in his ribs.
I remember Stanmore Orthopaedic Hospital very well I used to live close by – I attended when my dear brother…[Read more]

Hi Kevin,

I am really shocked that your consultant hasn't heard of Pomalidomide, although not widely available in the UK it has been going through testing in a big way in th US for some time.
You might have read Patrick used Bendamustine from Feb – August this year with little to no side effects and a very good result in reducing paraproteins,…[Read more]

Hi Elizabeth,

Patrick had the sister procedure Vertebroplasty which was 100% successful in reducing pain he had in his upper thighs and knees.He could hardly walk before the procedure but after just two weeks the pain dissapeared like magic!
Similar to Min's hubbie Patrick has lost a total of 5ins which really upset's him. Kyphoplasty was not…[Read more]

Why is everything underlined ??

Gavin I picked up your post on the old site and replied there hope you can get it

Gill

Hi Nicki

Stephen had his SCT in the summer of 2009. He was quite well through it all apart from the constant loo visits but very tired.

He managed to avoid the sore mouth bit by frequent teath cleaning with corsodyl toothepaste as well as using the corsodyl mouth wash supplied by the hospital.

A member on here has warned that yous…[Read more]

Hi Debs,

It was great to meet you last week, good luck with the table sale tomorrow. Patrick didn't suffer any side effects worth mentioning and like Mari says the time seemed to go by very quickly.
All our very best

Tina X

Hi Michelle

Oh your poor mum. Like Bridget Patrick has been in hospital this yeear with pneumonia. IV antibiotics will surely sort it out, the timescale depends on finding what bug is the cause. I know now that with any sniffle or cough the consultant is called right away and she drags Pat in – it used to be kicking and screaming but who want's…[Read more]

Dear Gaye,

Your response to Revlimid appear very similar to Patricks. Currently he is taking Thalidomide, he also uses Itraconazole a broad spectum anti fungal drug as he has had serious problems with fungal lung infections.
At the moment he is having transfusions of platelets once a week, 2 – 3 units of blood every 2 weeks and is running out…[Read more]

Roz,

Interesting to read ecoli was found as the last time pat was in admitted (about 6 weeks ago)with neutropenic sepsis the culprit was ecoli.We thought the contamination could have been transmitted via fish pond water. Initially I was horrified as ecoli can be put down to poor hygiene but I new that was not the case.
Roz, Patrick has had…[Read more]

Hi Roz

The only salts I can think of are mineral salts e.g.calcium, magnesium, potassium. These minerals have to be carefully balanced in the body – maybe Michael had a mineral imbalance of some sort. Calcium is a common one in MM. What does the consultant say?
If your GP is no use what about seeing the Macmillan nurse, they are specifically…[Read more]

Hi Gaye – We were told that the bendamustine was accessed as part of a clinical trial however he was not part of a group of people taking part just on his own? Access to pomalidomide is through special circumstancesas he has exhausted all other recognised treatments.
Similar to you Pat's counts have been low sometimes critically low which became…[Read more]

Hi,

My husband Patrick has the myeloma – even though he is in his 50's he still has Jet black hair and hasn't lost any either during or after his SCT or since with all the chemo he has endured!…and still looks younger than me

Best wishes
Tina X