[tmcParticipant]

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

[tmcParticipant]

Hi Gill
Thank you for the welcome I really needed to talk at the begining of this new relapse after so many years of going it alone. I am so happy I have found this site. One can't moan to family friends or neighbours I think they would soon get fed up with it. Also I have found out so much info from reading all the notes on other subjects.
Not so clever on the computer but I love the happy faces people include.
Well we have had snow and it has melted and now we are sunny and plus 10 so I may fertilize the grass if I can get my act togwether long enough
Love Teresa

[andygParticipant]

Hi Teresa
Just caught up with your posts – I've not been posting long myself but have learned a lot from the wonderful and supportive members of this forum. I was diagnosed October 2011 but recently my treatment has stalled a bit. Hopefully I'll get to a sct stage soon.
Anyway a belated welcome to the forum
Andy xx

[tmcParticipant]

Hi Andy
So sad to hear your treatment has stalled a bit, does that mean you have to wait for the Stem cell transplant as things aren't going so well for you on other treatments? What treatment were you on that has stalled
You haven't had MM for very long and you look young so I hope it goes into remmission quickly for you.
Our 4 years of remmission have ended and now the AKT trial has failed after only 3 hospital visits not even one cycle!
It is such a horrid thing to have to live with I really hope your treated gets sorted out quickly and you get the sct that you want
Luv Teresa

[HelenParticipant]

Dear Teresa
I'm so sorry to hear that the trial has failed so quickly for Peter, that must be so hard to bear. What is the next plan for him?

I finished all the pots last weekend, planted with alliums and lilies, then we had snow for 3 days! Heaven knows what will grow now:-P
Love Helen

[andygParticipant]

Hi Teresa.
I was diagnosed Oct 2011 but I think my symptoms started 18 months previous. The usual back pain treated by the doctor with pain killers and Physio.
On diagnosis my paraproteins measured 50 after 4 cycles of CDT my readings only dropped to the mid 30's. I was then moved onto PADS (Velcade). I had 2 cycles of that with no movement in pp levels. Next they tried me on DT PACE which meant 5 nights in hospital hooked up to 2 drips 24/7 with again no significant movement in my pp levels. I am now on cycle 1 of Revlamid + dexamethasone with fingers crossed.
They're still hopeful that I'll get to a level and have a sct. But I'm proving a challenge to the medics.
I hope everything goes well for you and remission is achieved again.
Oh by the way I'm 53.
Take care
Andy xx

[tmcParticipant]

Hi Andy
I hope the Rev/ Dex combination works for you and you get to the Stem cell transplant stage, but only after a long remmission on Rev Dex. first
I don't know what dtpace is but it required 5 night s in the hospital so may be you can tell me what that is?
Hope you are abel to enjoy Easter
Luv Teresa

[tmcParticipant]

Hi Helen
I hope the snow didn't affect your planting. Maybe it was just a light snow and no real deep frost to go with it so all is well?
I have alliums and lillies in my garden and they have been there for years. I only have summer flowrers in pots so no planting out for me until the end of May.
Yes we were so upset that the trial only lasted three treatments not even one cycle. Not sure what is next as Peter's pain is almost out of control now and sleeps a lot and can't move around too much. The blood results which showed that his liver function was up was the cause of it ending. The blood has been sent to the central office in USA (the trial was Glaxo sponsored and their offices are in USA) and we will find out on Tuesday after Easter what happens next.
So we are just practising with all the equipment the O,T delivered on Thursday night and are trying to laugh at living in what look like a very old folks home!!
Ah well deep breaths and stay calm
Luv Teresa.

[eveParticipant]

Hi Teresa

I would say lots of deep breaths are needed,you do not say if you have any support from children or friends,this is a time for some help.even if you can just have a few hours break ,to recharge your batteries.If you just need to chat come on here,someone will all ways reply:-)

Lets hope for some new treatment soon.Love Eve

[HelenParticipant]

Hi Teresa
No the snow didn't lie and as we are on the edge of the city it was too warm for thick frost so here's hoping. I have tried alliums every year for the last decade with no long term luck except for 2. One is as femma as a spring onion and the other just grows leaves, no idea why, i normally have quite green fingers, but there, sometimes thats the way of things.
My dad had double cardiac valve replacements 18 months ago and all the paraphernalia for mobility arrived in their house- my mum was fit to explode, it took up so much space and made it like a hospital. They got rid of some of it quite soon as it became evident he didnt need it all and learned to hide a lot when not in use, it was quite funny really but it has made life easier for them.
Keep your chin up, I too am at clinic on Tuesday, so will be thinking of you.
Love Helen

[andygParticipant]

Hi Teresa
DT PACE well the DT part of it is the usual dexamethasone and thalidomide (tablets). The rest was Cisplatin , Cyclophosphamide , Etoposide and Doxorubicin all given as an infusion 24hrs/day. Not sure how it equates as "pace" but there you are.
I've enjoyed Easter thanks – we've been out and even had a few drinks [url=http://www.freesmileys.org/smileys.php][img]http://www.freesmileys.org/smileys/smiley-eatdrink004.gif[/img][/url] I hope yours has been ok too.
My next blood tests are Wednesday hopefully they'll be ok as I'm feeling alright. Good luck at the clinic Tuesday.
All the best
Andy xx

[tmcParticipant]

Hi Eve and Helen
Sorry it's a combined reply.
Yes deep breaths did help I went to a yoga class on Monday night in readiness for bad news at the hospital today. I couldn't stop yawning but the yoga instructor said that was good showed that I was letting go and relaxing. Didn't realize I had so much relaxing to do, the whole class yawning!! I guess my batteries are recharged now.
I have two grown up children and two young grandchildren they all live here in Toronto thank goodness they didn't leave the country.

Anyway Helen you are right that is the way of gardens they do their own thing no matter what we try. If I knew how, I would send you a pic of my aliums when the are out.Last year the leaves were very brown but the flowers were still wonderful so this year I have started to water them even though they are only just popping through the earth.
Like your parents we hide everything away and only use the shower/bath chair, it gets a bit depressing looking at it all.
Hope your dad is ok and the valve replacement worked he must be young to go through that.
I hope your clinic appoinment today went well?
Peter's liver function blood test showed signs of coming down now that he is off all trial meds. An x ray to try and get to the bottom of this new pain mainly ribs. Next Tuesday a talk about alternatives. Tomorrow the pain doc to try different pain meds ah well it's cold and windy here so hanging around the hospital with a good book may be the best way to go.Luv Teresa

[tmcParticipant]

Hi Andy
My goodness so young and so full of medical terms.Good luck with your blood work tomorrow. When Peter had his 11 phials taken today he said don't drink it all at once to the young guy that collected it for testing boy some people just don't have a sense of humour the look he gave Peter could have turned him to stone!
Glad you had a few Easter drinks and that you are feeling alright. Does that mean good or just ok?
I think remmission may be a long way off this time, so many years(7) on all these meds and the poor old body getting older by the drug.
I hope your cycle of Dex/Rev has pushed you into remmission and you are not a challenge to the medics anymore
The SCT isn't a fun time so hope you don';t need it too soon.
Luv Teresa

[HelenParticipant]

Hi Teresa
Combined reply is fine. I do hope next week gives some workable treatment for Peter, you must be so worried. My appointment was almost routine, bloods, zometa, prescription, 'how are you ? see you next month'. Then a brisk walk the mile and a half home, calling in at my daughter on the way for a quick coffee.

I had to laugh when I read your post…. My dad was 89 when he had his valves done! He was the oldest patient they had ever done this procedure on in the north east… They gave him 6 months if he didn't have it and 70% chance of survival if he did… He opted to risk it, was in hospital for 5 weeks and was singing Christmas carols round the piano a week later, and celebrating his 90th birthday. 18 months on he moans and groans about the back and shoulder pain he developed since!!! 😛 As soon as I come near though he stops and says he mustn't whinge 🙂 He managed to get out in the garden a lot last summer but I think the shoulder is worse now so we'll have to do it.
Love Helen

[tmcParticipant]

Hi Helen
I am so glad your appointment is so routine and you get a good walk and a coffee with your daughter I just hope the sun was shining and the weather good for you. It is so great to get out of the hospital atmosphere and get fresh air.
We had our appointment yesterday and an x ray was taken today we were in again to see the pain doc. I was soooo mad you can not believe!
Peter has two broken ribs (a bit like Dai) caused by the myeloma and was offered radiation 5 days low dosage and another treatmewnt if the pain came back. He refused!!! He wants to wait and see what the oncologist offers next week. Anyway we did come away with new prescriptions for Fentanyl(Abstral)pills and Duloxetine (Cymbalta)pills in case you know them, and to wean off some of the other pain meds( hydromorphone,)I know it's his pain and his decision but I have to watch this pain and do everything for him I feel as if he is not helping himself!! I think I should not post this as I should wait until I am not so mad.
Anyway the alliums I have are the classic Ambassador I don't know the femma I will look it up. Also I am going to try the quirky Karataviense tiny withy basebasll sized blooms.Mine are in the garden not in a pot and alsways look great after the green leaves have died back they spread like crazy and have to be divided.
There I feel better after that flower chat.
I am so glad you have a healthy dad at 90 you look young in your photo so assuming you are the baby of the family.
Take care and how did the occupational health report go?
Love Teresa

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