[HelenParticipant]

Hi Stuart again! They are not following on either, I've tried to send this to you but I think I might just be cluttering up Mavis' s in box now
Sorry Mavis
Helen

[HelenParticipant]

Well David …… that gave me a bit of food for thought ……. I even had to go and look it up!
I hope you are getting better from your recent illness. How is the hedge getting on? I've cleared the back yard, will tackle the front garden this week
And Theresa do let us know how you get on ……what is the AKT trial about?
Bridget, how much mobility do you still have or are you most restricted by pain? I've lost track of our recent conversation.
Mavis I'm sure your appointments will be in the post soon.
Love Helen

[tmcParticipant]

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

[tmcParticipant]

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'

[tmcParticipant]

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?

[tmcParticipant]

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!!

[webteamKeymaster]

Hi Teresa
The fault is 100% at my end. Please don't be concerned. If you have any questions about the website or need any help drop me an email at webteam@myeloma.org.uk or post a new message on the discussion forum and I'll be happy to help.

Regards
Stuart.

[HelenParticipant]

Hi Theresa
Thanks for explaining about the trial, I understand a little bit about how some of these proteins work and the race to find a drug which switches off the malignant plasma cell production is important for all of us. I hope it works well for Peter and that he is recovered from the work up.
You are allowed to be negative, it's a very testing time and its not always possible( or healthy) to not acknowledge the reality and the seriousness of the situation.
Keep in touch
Love Helen

[tmcParticipant]

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

[HelenParticipant]

Minus 8……Brrrrr that's cold, I'm enjoying a heat wave here In unseasonably sunny Newcastle, it is 23*at 5pm, I'm in shorts and a t shirt and factor 50. So much for the maxim never cast a clout until May is out.
Good luck with the trial ,keep us posted with how it goes, it's interesting to hear what goes on in other areas of the globe. I'm off to water the pots now that I'm feeling so much better
Love Helen 😀

[eveParticipant]

Hi Teresa
It never ceases to amaze me how many carers cope for years,on there own,not just people who are away from their family,people who just seem to manage on there own.

I am not one of them,I found this forum last year and must admit if I have any doubt or do not feel things are going the way they should,I tend to come on here and gets lots of people opinions,which gives me some in sight

-8 in Canada and 23 in Newcastle and on the S E Coast sun out but NW wind blowing.Its a small world.Just cannot imagine Slim in shorts and tshirt,that,s all he use to wear.Its layers of clothes and a heated blanket.Eve

[tmcParticipant]

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

[tmcParticipant]

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.

[DaiCroParticipant]

Hi Teresa (my Irish Grandmother-In-Law had your spelling but was called Thirza):-)

Good luck with the trial, it sounds pretty powerful (I've been down the Velcade route). It sounds like a double whammy because Velcade has similar properties.8-)

I relapsed in January (confirmed January 9th) and was sent home with Revlimid and Dexamethasone… only to receive an urgent call at home from my regular consultant (I hadn't seen her that day) asking me if I had taken anything… I said no and she said good.:-)

She told me of a trial, the 'Aspire Trial' run by the American pharmaceutical company 'Onyx'… I qualified on every score except 5% mm in my urine (three goes over seven weeks) but they had called relapse at first sign and my kappa light chains weren't rising fast enough… where's your active disease when you need it? Anyway.. they closed the trial at the beginning of March so it was Rev & Dex for me (just started Cycle 2).

I was disappointed to say the least but funnily enough the inactive arm of the trial was/is Rev & Dex alone… so there you go, I can pretend that I was successful on getting on the trial but missed out on the cut (they still randomised 50/50 on all successful candidates).

Now then.. for general information, the active arm of the trial… Rev + Dex + Carfilzomib.

Carfilzomib, like Velcade (and by the sounds of it similar to AKT) is a proteane Inhibitor… but according to 'Onyx' much gentler, with far fewer side-effects and far more effective all round.

My consultant agrees… and I trust my consultant's opinion. She thinks that Carfilzomib could be the best treatment for mm yet and I believe her. Only thing is we are going to have to stick around for a year or two for the licensing (due in the USA in July) to reach europe and then us.

Carfilzomib, again like Velcade, ties you to the hospital for an hours infusion twice a week for three weeks with a rest week making a four week cycle… 18 Cycles in all. A bit of a bind… but 18 months which… according to my consultant… knocks the mm deep, deep back… allowing whatever you are on at the time, (it would have been the continuation of Rev and Dex for me) a clear run at keeping you going for a much longer time that the median for Rev & Dex… currently 30 months.

So it looks a highly positive drug… bring it on. Personally I hope that Rev and Dex gets me near my median so I can qualify for Carfilzomib… that's my goal… Rev and Dex, followed by the introduction of Carfilzomib and then back to Rev and Dex with a clear shot at the title.8-)

I am a generally positive person… wanng a bit at the moment because I know everything could go pear shaped at any time with this damned disease…but the hope is there… and it is a real, tangible, doable hope… and that will do for me.8-) 😀

Regards to all this fine spring morning.:-)

Dai.

[GillParticipant]

I don't know how I missed your post at the start a belated welcome from me
Gill x

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