Min replied to the topic Velcade Cycle 5 – Update: in the forum Treatment 13 years, 3 months ago
Got to have my two penorth as Peter has Kappa light chain too
This is getting complicated but I may be able to shed some light on the figures.
Only because I dug out some results form the time Peter was 1st diagnosed. and was awaiting his transplant and They are from Birmingham University too.
1column Kappa MG/L…[Read more]
Min replied to the topic Velcade Cycle 5 – Update: in the forum Treatment 13 years, 3 months ago
Hi Eve
Peter did 5 or 6 cycles of Velcade. Getting two DVT s as a result after the second injection.
Once he was on Tinsaparin. (clot buster) he was in no danger from the velcade as the drug is taken for 6months as a prophylactic to prevent any further clots that the velcade caused. His lungs were never checked again other than with a…[Read more]
Min replied to the topic HOME AGAIN then back in to stay in the forum Treatment 13 years, 3 months ago
the day certainly ended better than it began at 2am.
He is esconsed in his single room with en suite so Score 1 point
He is responding to the iv anti biotics Score 2 points
He had a long talk and cry with the lead nurse Score 3 points
She is arranging for a professional to talk to him about his concerns more points
He…[Read more]
Min replied to the topic HOME AGAIN then back in to stay in the forum Treatment 13 years, 3 months ago
As it happens events overtook us, Peter started with a temp at 2 am and at 4 he would not let me ring the hospital. at 6am it was 39.3 and we had a blazing row, followed by me walking the dog.During which I rang the ward came back gave him paracetamol.
We attended early for his appointment and he was told he was staying in had a hissy fit but…[Read more]
Min replied to the topic HOME AGAIN then back in to stay in the forum Treatment 13 years, 3 months ago
Hello Sarah,
Its so nice to hear from you, I know its the DS who will do the work but I just felt I needed the Macmillan to stick the boot in and make it happen.
They seem to have so much clout and can shout and be heard where we would go round the houses and get nowhere.
She was excellent at getting what we wanted 2 years ago when Peter…[Read more]
Min started the topic HOME AGAIN then back in to stay. in the forum Treatment 13 years, 3 months ago
I collected peter at 1-30pm yesterday, he had his stem cells infused at 9-30am that day ( I have to say the smell of sweet corn its gross) and he is pleased to be home and in his own bed.
Whilst in there both he and I discussed his returning on alternate days to the day unit for blood tests with healthcare professionals who all agree that the…[Read more]
Min replied to the topic News in the forum General 13 years, 3 months ago
Oh Bridget
Im so sorry to hear this news what a bug ger . and the rest.
Apparently its a little knows scientific fact that swearing is effective. what at i cant remember due to altziemers !
No one knows your body better than you and your instincts are correct so make sure you always listen to them.
i dont know what the plan will be for…[Read more]
Min replied to the topic Baloon Kyphoplasty in the forum Carers 13 years, 3 months ago
Hi Helen
Picked him up as 1-30pm he has been asleep in bed since, having had no sleep in there so dont expect him to apear much before am tommorow. Back on Friday for bloods and GCSF at 36 and again on Sunday to ward 33 so if you still in then will call on you.Hope its going well.
Min
Min replied to the topic Velcade Cycle 5 – Update: in the forum Treatment 13 years, 3 months ago
Hi Dai,
Whilst I wait for the phone call to go collect Peter, I remembered that when he had his back op last week he had to wear the compression socks( delightful) and the nurses gave him a plastic bag to put on his foot and ankle which allowed the socks to slip on quite easily.
Hope the swelling is still receeding and the velcade side effects…[Read more]
Min replied to the topic Myeloma X1 stage 2 in the forum Treatment 13 years, 3 months ago
Hi Eve just a quick one.
Get him to take the Dex 1st thing in the morning before he goes to the unit, It might have worn off by bed time!
love
MIn
Min replied to the topic Baloon Kyphoplasty in the forum Carers 13 years, 3 months ago
Hi Helen
He is in 33, gets his stem cells back at about 9-30am should be going home by 11 ! my daughter and he have both asked for him to stay in but he is in a 4 man room with emergency leukemia admisssions so it is probably safer for him to be at home. Not at all happy about having to return to 36 for bloods as there are often a lot of sick…[Read more]
Min replied to the topic dad just diagnosed at 48 in the forum Newcomers 13 years, 3 months ago
Hi Meike
My husband had a balloon kyphoplasty on Friday last, this is the second time he has had one but on this occasion he is suffering from more 'discomfort' mostly in his ribs but he says its muscle pain.
Probably from being thrown well not exactly thrown but you know what I mean! over from his back to his tummy for the op.
When we were…[Read more]
Min replied to the topic Patient view/opinion for a Royal College of Pathologists / Association for Clinical Biochemistry in the forum General 13 years, 3 months ago
Hi Craig,
I am just a carer of a MM sufferer who in 2 short years has undergone CDT therapy followed by a stem cell transplant and more recently a relapse with velcade and revlamid therapies.
Not being the patient I don't feel qualified, but i think there are a good many people who would love to hear more and have more input and indeed…[Read more]
Min replied to the topic Hello All, Michael's garden is done in the forum Off topic 13 years, 3 months ago
Hi Roz
It all looks superb, someone has put a lot of hard work in and you have obviously put a lot of thought into it.
Low maintenance in order to manage it. Bring on the Birds
I love your garden bench, Michael will be watching you sitting there, and possibly sitting beside you silently.
Love MIn
Min replied to the topic Baloon Kyphoplasty in the forum Carers 13 years, 3 months ago
Nice one Helen, Mine will be bacon and tomato! See u monday
Peter is sore but sleeping, Im off to the shops for some treats.
Min
Min replied to the topic Tube Free at last in the forum Off topic 13 years, 3 months ago
I bet Stephen is relieved to be able to move about in bed again. Hopefully this is just the start of another new beginning for you both. Can you escape to France now?
peter is following on behind you Stephen. Again.
When I joined this site you were writing his SCT blog and I was in awe of what was to come, but found it very useful as a means…[Read more]
Min started the topic Baloon Kyphoplasty. in the forum Carers 13 years, 3 months ago
Collected Peter from the hospital this evening where he was having T6 and T12 fixed with Baloon Kyphoplasty. Been delayed for over 9 months, due to relapses and DVTs. This is his second BK and now has 4 vertibra filled with cement.
He had a letter to tell him to attend at 11am and ring ahead to check there was a bed.
Peter was awake from…[Read more]
Min replied to the topic Bendamustine Clinical Trial in the forum Treatment 13 years, 3 months ago
Dear Susanah,
A very worrying time for you, and tiring too.
I hope Michael is back in his home with you very soon and feeling much better.
Love Min
Min replied to the topic Treatment in the forum General 13 years, 3 months ago
Dear Gaye,
A very difficult choice to make but I respect your decision and feel very humble that you can share your thoughts with us.
I am pleased to be able to hear from you again as I was concerned as to how you are.
Thank you for all the wise moments you have shared with us.
I visited a hospice last week for the first time and was…[Read more]
Min replied to the topic 'I want to see the bright lights tonight' (song) in the forum Off topic 13 years, 3 months ago
BRILLIANT. very well done.
Min