Roz
Just a thought, have you both considered getting a second opinion? A few of the people on here have had experience of Dr's who are not up to the job! That is not to take anything away from the excelent ones we now have but Dai's treatment in Wales is a prime example of one.Peters problems with his kidney Dr another.
One wonders if a second opinion would be a good idea.
Min
Hi Roz
Im so pleased your back I was getting worried about you and Michael:-S
Lots can happen between now and Christmas, and they usually let people come home for a few days over christmas from hospital, so keep your fingers crossed and I will cross my toes for you;-)
We will be staying at home for the holiday as peter has Velcade on xmas eve and dex. then Dex on Christmas day. Joy of Joys:-(
Decided not to inflict his mood(s) on the family or grandchildren just in case.
If your alone will chat then.
Min
Hi Jackie,
My husband was diagnosed in Aug last year. At that time he had dreadfull pain, could not climb the stairs, lie in bed, or do much of anything due to the pain.
It may take a little while fo them to find the drug that works best on his pain. Peter for instance found that oramorph gave him indigestion. He has the same pain medication as Bridget now. Occasionaly he stops it and takes tramadol for a while then goes back to morphine rather than increase his dose.
Has he had any kind of xray or mri to determine the cause of the pain? It may be that he needs something stronger, dont be afraid to ask, they will not think he is a wimp, they will understand and will be very sympathetic.
Dont just let him put up with it until his next appointment, deal with it before it gets out of hand. Life in pain is hard for both of you as you as his wife feel helpless. this is one of those times when YOU can do it for him.
Hope this helps
Min
Hee Hee John
Before mm Peter knew how to do as he was told but since then he has become dextankerous… Dex has a lot to ansa for. But today he is feeling really good found a new bottle of stuff called Ferogobin b12 its for iron production and he started taking those q10 something or other tablets for his cramps and for the 1st time in over a year he slept all night until 7am. So dont know if its the velcade or a combination of all of the above but having a good nights sleep has done wonders for his mood post dex!!!!
He is also on a high as he as has for the 1st time ever learnt how to surf the net. Looking for a remote controlled tank of all things… Now I feel obliged to get one for him off santa!
Oh I forgot no breathless today at all must be the velcade as non since friday now.
Min
Hi Elizabeth,
Peter had Baloon kyphplasty done on 3 of his lower vertebra in December last year, He had immediate relief from the pain, and gained about an inch in height. He went from taking mega doses of morphine to taking 2 paracetamol. There are several reasons for them not being able to give you back height
1 The length of time from collapse of vertebra to the op is important as the bone sets and you cannot get it to go any higher.
2 If you have had a blast of radio therapy for the pain, it has the same effect of setting the bone.
The ideal time to get it done is as soon as possible, but being on medication often prevents that.
We saw the surgeon again yesterday and he is to do two more in about 3 weeks time when Peter is on his 10 days off meds. From the point of view of getting him off his walking sticks and off morphine it was brilliant.
This time he has not had any radio therapy and its only a matter of weeks since these ones have been discovered but the trouble is, they collapse because the myeloma eats away at the bone and they cant actualy fill much, but the surgeon was saying from experience it does not matter how much cement that he uses in all cases it prevents pain.
Peter has lost 5 inches in total now and has just had most of his suits altered to accommodate his new height, he is not happy with the pinching feeling in his waist that he gets due to being smaller/shorter and he is always in pain in his sides now from his ribs sitting on his pelvis and we are going to see another surgeon to see if he can have that bit of flesh removed to take away the pain.
He had his op done at Newcastle General and was in overnight but only because he had low blood pressure. Most people go home the same day. He had a general anaesthetic, in order that they could stretch him whilst under the 'gas' but some people have it done with a local anaesthetic. Its non invasive key hole and leaves 2 tiny scars of about half an inch.
Need to know more ask away.
MIn
Welcome Norman
Good to have you on board,and sorry that you find yourself here, no one who posts here wants to be part of it, but I can assure you, you will find the answers to your questions on here. If not on the help screens, dont know if the are here yet off the old site. Most definatly from the myeloma infoline which is manned by a very able specialist nurse.
Someone on here will be able to answer any questions you have about symptoms you may have as there is always someone with experience of some kind, willing to help.
Pain is not something you should have to suffer from and paliative care, can and should be sought. (Specialised care focusing on the pain) Bone pain is common, back pain fairly normal, have you had any xrays, mri's or nuclear scans, as bone damage often not always goes hand in hand with MM. My husband has several crush fractures in his spine and the pain of them is what helped to bring about his diagnosis. Severadol, morphine and or tramadol help him cope with the pain.
Your MM nurse specialist will help you find someone who can give you the appropriate medication to deal with and live with the pain.Occasionaly a blast of radio therapy will help.
Ask away and we will endeavor to point you in the right direction.
Min
Im very pleased we have all arrived safely, now put your thinking caps on for others who we may have left behind. I thinks its time for a party, red wine cucumbers etc. Or as its nearly Christmas, crackers? Seven weeks to go folks.
This time last year was our lowest point, and therefore I for one am looking forward to Christmas this year, even though Peter has chemo on Christmas eve and Boxing day.
Min
The Silent Treatment
A man and his wife were having some problems at home and were giving each
Other the silent treatment. Suddenly, the man realized that the next day,
He would need his wife to wake him at 5:00 AM for an early morning business flight..
Not wanting to be the first to break the silence (and LOSE), he wrote on a piece of paper,
'Please wake me at 5:00 AM.' He left it where he knew she would find it.
The next morning, the man woke up, only to discover it was 9:00 AM
And he had missed his flight. Furious, he was about to go and
See why his wife hadn't wakened him, when he noticed a piece of paper by
The bed. The paper said, 'It is 5:00 AM. Wake up.'
Men are not equipped for this kind of contest.
boom boom this is soooo me! I had to share it with you all
Min
Roz
I think I would want to know if he has done anything of this nature before;
I would also want to know if he was the one who did the first operation, why it went so badly wrong, and if he is the one who is going to attempt to do it again what assurances he can give that the second op will be more successful than the one before. Is he for instance going to ensure he gets rid of all the infection and can he assure you that he will not introduce more infection and make him ill again. From my recollection you said he got poor care in the hospital where he had the op, ask for his assurance that they will treat him better, and return him to his present hospital as soon as in order that he can continue to recover as he is at present.
Most important that they do not make him ill to the point that he has to spend a further 9weeks recovering. Maybe he needs to use some innovative dressings. I know that there are some available with silver or something in them that kill off all infections made by a company called convatec.
I only know of them because my daughter has them as a client, and she told me of them.
Hope this helps
Min
PS good luck and a hug
As a bystander I don't get to know what dexitude feels like , But I do know Peter had just gone back on it, His 1st day the velcade did not turn up until 4pm and the dex had to be taken with food when we got home at 5.30pm. As you all know it should be taken early morning to wear off by bed time. Imagine what he was like the next morning having tossed and turned all night. For anyone new to dex….take it first thing in the morning. Haven't seen any side effects yet apart from pigging out. Im sure the moods and tempers wont be far behind! (Been there got the tee shirt) off last time. Even broke a tooth gritting them and smiling. Happy Days eh.
Min
Maybe a catch all title that is not mm related but which binds us all together wether we are accompanying a loved one through there journey with mm, suffering in silence alone without loved ones or just needing the support of others who understand where we are in life. Maybe it could be a just the ability to knock on the door of the new site and introduce yourself display photos of things you like, Tell a joke etc.
Wont get many of them from me as I cant remember any ! But do love to read others.
Min
HI DAVID
Peter gets this rash and thinks its off the elastic in his socks, or the nylon content of his socks or the washing powder used to wash his sock! Whatever it is he has a cream from the Dr for it and it works. I Even bought him socks with comfort tops (no elastic) to see if it stops.. It didn't. Changed the washing powder bought 100%cotton socks still there. Sometimes it goes in the summer time when he does not wear socks??? whats all that about then.
If it don't itch dont worry.
Min
Nice to see you to see you nice.
Go get Gill now web team
Nice to see that they will be feeling uncomfortable.. If they are to be made redundant it will be Nice to see them wrigglng uncomfortably at decisions made by some faceless beaurocrat! Give them a taste of what its like to have life changing decisions over which they will have no control. Mmm what goes around comes around!
Min
Hi David
Peter had all of them on the same day except for urine collection. He never had one of those even though he had light chain mm.
What a shame you have to drag yourself there for several days in a row. But best of luck with them all.
Min
