Min replied to the topic Only Found out 3 days ago I got Myeloma in the forum Newcomers 13 years, 3 months ago
Hi Ivan
Good hiccups cure. Half a teaspoonfull of sugar on the back of the tongue for a short while then chew it. works for my man Google hiccups +sugar
Min
Min replied to the topic Apprehensive in the forum Carers 13 years, 3 months ago
Oh deary me, two glasses of wine and I have the hangover from hel l Bridget.
I dont think I have been so stressed in a very long time. Woke at 4 and never got back to sleep. Hospital this morning and consultant told Peter his numbers !*!*!!!* wish he had not as I went into anxiety mode; not good, sent him off to see the transplant co-ordinator…[Read more]
Min replied to the topic Apprehensive in the forum Carers 13 years, 4 months ago
I can see your disappointed Eve,
but don't despair remember this is a marathon not a sprint!
There will be many ups and downs on this journey. ( I am struggling to spell as just had a pre dinner glass of wine mmmmm)
Take into account his spell in hospital when he was ill and imagine the priority now is getting him fit,well and some weight back…[Read more]
Min replied to the topic Thalidomide in the forum Treatment 13 years, 4 months ago
Hello Gill
Im pleased to hear you have Stephen home at last.
I know exactly what you mean about the fancying food and then not eating it. When Peter came home I had a fridge full of food that went into the dogs (at least it wasnt wasted) but I know how soul destroying it is to make tasty morsels that cannot be consumed after special…[Read more]
Min replied to the topic Starting Chemo in the forum General 13 years, 4 months ago
Hi Ivan
My husband tried curcumin as an alternative treatment after his SCT. I read that asparagus was amazing and fed it too him as often as I dared. But if these things worked no one would be taking chemotherapy or thalidomid.
It was difficult to say if it kept the beast at bay or not but when he came off it his numbers rose significantly.…[Read more]
Min replied to the topic Urgent Doppler Scan For DVT… in the forum Side-effects 13 years, 4 months ago
Hi Dai
I think the important thing is you do have some treatment that will see you ok until such time as you get the Dopler scan, no doubt by the time you get it, the medication will have been so effective that the dopler with prove negative.
Im pleased you finding the low dose easier to contend with and hope your fingers recover soon from the…[Read more]
Min replied to the topic Only Found out 3 days ago I got Myeloma in the forum Newcomers 13 years, 4 months ago
Hi Ivan,
Welcome to the exclusive little mm club.
I am married to mm sufferer. I recognise the names of your interim medication. Ferusemide will give you back your previously slim legs.LOL provided you drink plenty of liquids. Statin will bring your cholesterol down . It goes up because your kidneys are leaking protein and for some reason this…[Read more]
Min replied to the topic Velcade – Cycle 4 – Update in the forum Treatment 13 years, 4 months ago
I Cant take credit for my thughts Dai, I read it and watched a video from usa that Jet suggested there had to be more consideration for the quality of life whilst treating MM and it also said the results on lower doses of drugs where just as if not more effective than hard heavy doses.
In any event, I am pleased your feeling much more chipper and…[Read more]
Min replied to the topic thalidomide in the forum Side-effects 13 years, 4 months ago
Brilliant Sharon,
Pleased to hear you now have a plan. Do you have help with your children ? I hope your not struggling on your own.
little ones are so exhausting and cant understand why mum is not well.
I can tell you that when my husband was 1st on Thalidomide he too was having a bad time but he started it in August and had a drug holiday…[Read more]
Min replied to the topic BRIDGET ARE YOU OK in the forum Off topic 13 years, 4 months ago
Hi Joe,
My description of Peter when people ask is he's 'coming on' meaning he is definatly not as bad as he was, he is not at his best by any means but he is somewhere in the middle.
He is gaining weight, gaining strength, and gaining an appetite too. We are back at clininc next Tuesday when he will be told the day for his 2nd transplant.…[Read more]
Min replied to the topic Apprehensive in the forum Carers 13 years, 4 months ago
Hello Eve
I dont think the apprehension ever goes. I alway keep everything crossed when we go to clinics but my method is expect the worst and if its better its a bonus if its as I expect its not such a sad great shock.
Fail to prepare …. prepare to fail… Ever the pessimist never the optimist .
Good news is always welcome of course but…[Read more]
Min replied to the topic BRIDGET ARE YOU OK in the forum Off topic 13 years, 4 months ago
Hee hee I got Peter the cinema thing with his DLA last week and its brill… Means I can buy extra popcorn as I havent paid to get in … BONUS but had to watch Harry Potter … not my cup of tea. But cant complain wanted to get him out to the blu** house as I was going up the wall. Oh forgot to say Bridget we used to put some books on the legs…[Read more]
Min replied to the topic Swollen Leg… in the forum Side-effects 13 years, 4 months ago
Dai
OMG Peter had dreaful DVT in both legs with velcade which turned into many clots in his lungs. Too many for them to count. Pulmanary embolisms.
There is a simple blood test called a D Dimer or D diamond test which takes no time at all for the results. Following which a scan ( type pregnant women get) for the clots.
In his case he had big…[Read more]
Min replied to the topic BRIDGET ARE YOU OK in the forum Off topic 13 years, 4 months ago
Hello Eve
Well I took your advise and got the appiances myself and wooden worktops too, just getting the units and fitting from an expert…. I am almost an expert myself (not at fitting but know all I can know having spent far too many hours into the wee small hours doing research)
Thanks for the advise and hope Slim is doing well. You will be…[Read more]
Min replied to the topic thalidomide in the forum Side-effects 13 years, 4 months ago
Hi Sharon
Hang on in there, first things first, Im sorry your having such a dreadful experience on Thalidomide. It is not a pleasant drug for anyone, and the knowledge that it is being used to fight cancer is mindblowing.
Sharon I do think you need some help from someone who can talk you through this and suggest tommorow you ring the freephone…[Read more]
Min replied to the topic BRIDGET ARE YOU OK in the forum Off topic 13 years, 4 months ago
I Bridget,
I dont know how I missed this post ( Well I do I have been researching kitchen appiances, benches and workmen etc. So i have been buried in the computer with an occasional visit to outlets etc. I hope by now your legs have got a little better, but if they have not Peters specialist told him he could take up to 200 mg a day NOT ALL…[Read more]
Min replied to the topic BLUE BADGE in the forum Carers 13 years, 4 months ago
Hi Sarah,
I know your feeling very apprehensive at this time, but you know they can do some amazing things in hospital these days.
I am sure they will do what ever is needed to get Gordon back on his tractor. Well maybe get him home first.
I look back a few weeks to when Peter was soooo ill unable to get his breath his heart racing at break…[Read more]
Min replied to the topic Infection in the forum Side-effects 13 years, 4 months ago
Im sorry to hear of Stephens infection. I sincerely hope he gets over it quickly, and is back home with your soon.
How is he otherwise Gill? is he recovering from his SCT? I remember you saying he was finding the 2nd one a struggle.
Peter will be going in soon for his 2nd one and wondered how long it may be. I believe the recovery time the 2nd…[Read more]
Min replied to the topic Bendamustine Clinical Trial in the forum Treatment 13 years, 4 months ago
Oh Dear Sue,
I think you need to get him to take the Dex first thing in the morning so its worn off by bedtime.
Peter had just one dose of melphalan it was a mega mega dose. If you imagine when you get a dose for a stem cell harvest your given a 15% ratio per square mtr of body mass and he was given 70%. not quite the same quantity as for a…[Read more]
Min replied to the topic RE: Starting a discussion… in the forum Newcomers 13 years, 4 months ago
Hi looby loo
Your poor Dad, has a lot on his plate and must feel exhausted. The treatment regime on its own along with the disease is very tiring, and coping with your mums condition must be really stressful for him.
Speak to a Macmillan nurse, see if she can get any respite care for your mum at a day care centre to give your dad a break of…[Read more]