Hi Dai
Thank you for the lovley long email and so much info' I would like to tell you I watched your utube performance. I am so sad to hear you are a bit down at the moment but Rev Dex lasted over 50cycles for my husband before he relapsed let's hope it lasts a long time for you so that you can get the trial you want.
This trial, AKT/vel/dex I hope ends up working and is a bit gentler as you say.At the moment we are just desperate as my husband is so ill. Pain etc etc but I would like to ask what can I do to help him eat a bit and what about those bathroom problems meds make him not go other meds make him go too much when does that get sorted out after a certain number of cycles?
These trial are so specific aren't they I haven't heard of carfilzomb but will ask about it. The akt trial is run by Glaxo. I just hope they let up a bit on the rules.So many MRI ECG Blood test exactly 10 mins between this drun and that drug no food now food in 2 hours take a daily blood test at home, they did give us the machine. I guess it's all a case of just getting into a routine.
As you said on the other site MM defines us the other person we used to be has sunk down somewhere.My husband is an architect and when he finished work to start treatment in 2004 he took up woodworking has made beautiful furniture and now this disease has rendered him useless he shakes so muchand is so tired and can not even stand at the moment cruel old world sometimes but I did like your u tube singing and hope you get many more years of pleasure from it. Love Teresa
Hi Eve
Yes I did go a long time before finding this site and I wish I had found it at the very begining I am sure I would have coped a lot better and not had so many dreadful days along the way. As you said the old life is in the past and this is the new one so enjoy your walks and hope the NW winds don't blow you away.If you can give any ideas on what to do to save a three hour wait time at the chemo daycare I would love to know. I thought about just going home and refusing the trial but it was not my decision, Peter is the one with MM. My husband is also in layers of clothes and heating blankets plus great woolly socks even in bed plkus the heating is still roaring away.Love Teresa.
Hi Helen
Yes it was a bit nippy but today it is plus 15. Since moving from London to Toronto I have never experienced such a strange winter. I am not complaining as the older and crankier I get the less appealing the cold and snow have become.
Anyway the trial. And what a trial it was. I will ignore all the bad things that happened(driving wait times starving leaving home at 7 arriving back at 4) I am sure you have been there! and tell you Peter was accepted and started his anti nauseas drip then the Velaced injection 10 mins later AKT inhibitor pills 10 mins later Dex pills two hours later allowed to eat. Many ecg's and blood tests before and after.Next two days at home taking only AKT then Fri back again. So our routine is Tue Fri Tue Fri then a week off then start cycle 2 and on we go So here's looking forward to ironing out all the bugs and getting a routine going and some pain relief and M proteins down.
Glad you are out in shorts and watering the pots something growing in them I hope? I have put in lettuce seeds way too early but I am hopeful the garlic has popped up and I now know there is life in may garden again. Love Teresa
Hi Helen
I'm glad you understand a bit about the akt inhibitor.Peter is still really tired and in a lot of pain. Bridgit recommended some pain killers. So at the pain clinic we asked for help and were given hydromorphone(?) and tylenol it has eased the pain. We are off tomorrow to see if we can start the akt trial. All results so far are fine just the bone marrow biopsie to come back. The oncologist seems 90% that we will start tomorrow. We are booked in for chemo Velcade drip and blood and trial nurse so let's hope it has the same effect as the Revlimid and it works quickly. We are prepared for a long settling in period. Luckily summer is coming so the roads will be easy to drive.Happy to read your bout of pneumonia has cleared up now and you can enjoy the day.By the way we are back down to minus 8 this morning so our little bit of good weather was just a teazer not here to stay.Thanks for answering my note. Luv Teresa
Hi Dai
Just thought I would let you know that my husband Peter was on rev/dex for over 50 cycles. After the first cycle his mm was undetectable and remained that way until this March
So I hope you have the same results I do know others that have gone out longer here in Toronto not sure about world wide.
So good luck with everything and I hope you get a good long time on Rev/Dex if it suits you Teresa
Hi Mavis,
There is a long list of words to describe the first feeling when given a diagnosis of MM scared being just a mild one,
My husband was diagnosed in 2004 and has had four years in remmission now on Revlimid. There are a lot of treatments out there and once they find one to suit him I hope he gets a long remmission time.
Telling family and friends is really hard, even now my family don't know the half of it, so a site like this is great for chatting.
I also think if you can find a support group to visit it would be a great help. I didn't do this until just recently when I started being overwhelmed, a bit like you,as we are starting all over again as his remmission has finished now, and I wish I had found help years ago.
It can just be a mind state as well, I now put on my careers hat and go at a slow pace during hospital visits with plenty of knitting or good books to read. I also take a note book and document everything, it's amazing how nmany times you will be asked the same questions.
Good luck with conveying your news on the weekend,my children were still in universoity when we told them, one did very well and moved back in as soon as uni was over,to help out while looking for work, the younger one found it harder but has since moved onto clinical work and has such compassion.
So good luck with it all and stay connected to us here.You are not alone Love Teresa
Hi Andy
Haven't heard about your treatment but recognize several of the drugs. So good luck with this aggressive treatment and you make sure you give that nast MM a good talking too and make sure it gets up and goes.Love Teresa
Hi Mavis
When MM attacked my husband's body it also entered my life. So I guess I use we because it's a fight we are both in.I quit work in 2004 when he was diaganozed and have been beside him ever since.I know he bears the brunt of it all but it shares it out about if I say we. A bit like me sharing on this site. You mentioned had I been on the webcast for myeloma foundation. am sorry to say I am useless at this computer stuff but if you can tell me what to do I will certainly have a go. Well just off the Princess MArgaret Hospital hope the downtown traffic isn;t too bad but at least the weather is great and it will be plus 17 this afternoon. For us here in Toronto in March that is amazing!!
Hi Bridgit
Five and half years with MM and not much of a break from it must be absolutly terrible.I am so sad they can't find anything to give you a long time release from it all.I am sorry to hear that you are useless to the trial organizers that is a horrid word and none of us are useless even the trial people could use something you have to give but I guess it's all down to a certain criteria and that's it. Thank you for suggesting the pain meds I am taking the list to the hospital with me this morning . After last nights MRI I think my huisband is up for more meds. He has refused too much up unitl now as they put him into the zombie state and he has me picking spiders off the walls until he is under control!They also make him shake a lot so I think we need to go up slowly but his pain is bad and will probably never be fully under control without him losing a touch on reality.Not sure what radiotherapy is but he has had 30 days of radiation for a tumour is that what you meant?
Hi Stuart
I do hope I haven't done anything to cause your computer problems. I am useless on the computer and it took me ages to figure out what to do and even now I am not sure how it all really works. Others have asked if I have checked out the beacon etc and I really don't know where to start.It would be lovely to send a photo attached but I think that will be impossible I may have to get proffressional help.If it was me sorry'
Hi Helen,
You asked what an AKT trial is.I am going to copy the info straight from the form Princes Margaret Hospital gave to me:
A phase 1b study to evaluate safety and tolerability pharmacokinetcs and pharmacodynamics of the oral AKT inhibitor adminitered in comination with bortezomib and dexamethasone in subjects with relapesed refractory MM.
The AKT protein is involved in the development and growth of cancer cells and if the protein is blocked it may help prevent the growth of cancer cells. There I bet you wish you hadn't asked!
Didn't reallly understand most of that but it started with an MRI at 11-30 last night followed by ecg and blood work this morning. Then three bone biopsies during the trial. The trial opened up in Nov 2011 so not too much info about it and we are not looking forward to the dex days and the bone biopsies.
The MRI last night was torture for Peter. He has lower back ribs and hip pain and with all the metal in his back to keep him sort of upright he can not lay straight or walk upright.The 40 mins in the tube reduced him to tears and it took two helpers to get him off the table!Am I alowed to say stuff like this or is it to negative?
Anyway thanks for asking and looking on this site has so helped me feel calm inside. Just knowing I can have a little peek at other notes and write one myself is so wonderful
Hi David Helen and Bridget
Thank you so much for replying to my note. I am not feeling so overwhelmed anymore. We have just heard we do not qualify for the pomalidomide trial as we have been off velcade for more than 6months.
We are waiting to hear about the AKT trial, it depends on the results of the bone marrow biopsie MRI etc
It'a amlost spring here and the robin came to the garden to day so I am feeling really up
I must apologize for not giving my name it is Teresa and my Husband Peter has had MM since 2004.We live in Toronto and attend Princess MArgaret Hospital more often that we want too.Our families are all in UK. My mother in law had MM 20 years ago and my aunt also had MM 10 years ago I so wish I had talked more to them. Maybe I should burden my family with all the nasty bits then if it continues to invade the family others will be more prepare?
Thank you again I was so fearful nobody would reply .
