Hi Tom, like everyone else I am absolutely delighted by your news. Yes we all want to hear things like that. Wish I had heard of the treatment you had, especially as I have just started a clinical trial and cannot believe the number of tablets I am taking and this will go on for months. The good news is it seems to be working as my PP has gone down from 70 to 50 after only 2 weeks. Keep well Sylvia
Bridget, You were kind enough to send a reply and I can't find it on the site. In fact I am having a lot of trouble finding anything! Bad day? Senior Moment or is the site playing up. Sylvia
Try manor Insurance. They insured me last year and reasonable. Sylvia
Hi Dai, it is such a long time since I visited the site I am sure you will not remember me but I came on today in search of some support from all our lovely friends out there and had to respond to your post as I have just started a trial called Eloquent which only opened last week. I got the arm that contains the new drug and have had one infusion so far, next one tomorrow. Luckily it went well, no side effects at all and they tell me if that happens on the first one the others should be the same so fingers crossed. The downside was my renal reading rocketed from 80 to 160 so I had to stay in Barts for 2 nights being pumped with fluids and now I am drinking for England. They said it was the MM as I had not had any treatment since plateauing in Aug so not surprising it finally caught up with me. Seems a coincidence though. We shall see what happens tomorrow. I am telling you all this because although of course I hope you get the trial you are waiting for, if you don't perhaps your consultant can advise re Eloquent. I actually came on today to see how people cope with Dex and Rev as that is part of the trial.Have people suffered with bad side effects? I was told it is very well tolerated, I'm waiting! Well Dai I do hope you get good news soon.Do you mind if I just wish Bridget good luck in your post. Best wishes to all friends out there. Sylvia Keen
Hi Keith, I am so pleased to hear from you and know that all is progressing well, apart from the tiredness. I think you are very brave to have SCT and it seems lots of people have it more than once. I am waiting for an appointment at Barts and dreading them suggesting SCT or a trial! I am such a coward but I guess if my MM is aggressive I might have to go down that path rather than the more usual step 3 drug, the name of which I can't remember.I'll let you know how it goes but meanwhile I am hoping you get a really good outcome and are soon back to your old self. It will all be worth it then.Sylvia
Thanks Tom,yes, mentally feeling a bit better today, helped no doubt by a surprise visit from our little grandson, Henry. Always sure to raise the spirits. Then sadly I came online to read the sad news from Gill that Gaye had died. I don't know how long ago that was but I am very sorry,she was such an inspiration to us all. Hope you had a good weekend. It was lovely earlier but has now come on to rain.Still that meant the cricket was tied meaning we win the series! Every cloud…. Love Sylvia
Dear Gill, thank you for letting me know the sad news that Gaye had died. When was that? I am so sad, she was such an inspiration to us all. Thank you again. Sylvia
Hi Gaye, have just come back to the site, you may have seen my posts. I don't see anything recent from you so am hoping you are well. It would be good to hear from you. Sylvia
Hi Keith,I have just come back to the site and was looking for something from you to know how you were getting on. You were one of the first I read about on Velcade.Don't know if you have seen my recent post but I have just finished 6 cycles and have plateaued at 11 so no point in having any more Velcade. Would like to know how you are getting on, hoping all is going well for you. Sylvia
Hi Bridget,thank you for your support too, I am so glad I came online because those 3 replies have made me feel so much better, hopefully putting things more in perspective. As you say they are always looking at new things and furthermore I do believe a cure is just around the corner.I'm pretty sure that when I go to Barts they are going to suggest a trial. Last time I went there I said I would be willing as I felt it only right to try to put something back so to speak.However when I was sent details of one I was totally shocked at how traumatic it appeared to be and I chickened out. Probably very cowardly of me and I am gearing myself up to try to be more open- minded if they suggest something similar this time. I would be interested to know if anyone has taken part in a trial and if so, how it went. Meanwhile thank you again and if I feel down I shall remember your words and yell ( and come back to this fantastic support group again) Love for now. Sylvia
Hi Mavis, thank you so much for your encouraging reply. As I just said to Tom I feel better already!.Yes it is possible they might give me a break.It's 3 weeks since my last injection but I can't say I feel fighting fit! Of course most of that is due to my back. ( I had screws put into my collapsed vertebrae a year ago.)I am due to see the surgeon next week so as you can imagine I have lots of questions for him, priority being why am I still in pain a year down the line? My consultant changed my pain relief a couple of weeks ago, slow release morphine supplemented by paracetamol as and when but I can't say there is any improvement, indeed it could even be worse!I was encouraged by your comments re outcomes perhaps not being affected by my agressive MM and Tom saying there are always other things to try. My Drs have always said this too. I hope I am not breaking any confidences when I tell you I had heard, from a pretty reliable source, that they have in fact just isolated the MM gene and if that is the case a cure could quickly follow. How great would that be!! Possibly the best thing if you are going to get something nasty we know that they are progressing in leaps and bounds with the treatment of MM in particular.So I am on a break until I see the consultant at Barts and as you say I hope the next course is not too traumatic. I have been very lucky in that respect. I will let you know how I get on and thank you again for your support. Sylvia
Hi Tom, thank you for your speedy reply. I know of old you are always one of the first in there with support, and hugs and it is much appreciated by us all I am sure.I feel better after receiving your post, and Mavis's and probably after a few more days I shall be back to my 'glass half full' state.Love and hugs to you and I'll let you all know how I get on at Barts.Sylvia
Hello Dai, again several weeks have passed since I came on site but have been prompted today for several reasons mainly cos I saw my consultant on Thurs and was quite depressed. I have completed 6 cycles on Velcade and have plateaued at around 11 ( started at 37) so has been decided no point in continuing. Have been referred back to Barts to see if I should have the traditional no 3 step, the name of which escapes me, or be trialed for some new drug so we shall see.It was depressing because I had such high hopes and was looking forward to a nice long remission but that looks unlikely now. It is also scary that it was only a partial response and that, although my first course of treatment was so successful I regressed after only 6 months. It's not nice to hear that my myeloma ( level3)is 'aggressive'so I have lost some of my earlier optimism everything seemed to be going so well. I had little or no side effects and on a good note I should tell you that was the same throughout the 6 cycles of Velcade ( apart from tiredness) and I am sure that was because it was sub cut. Which brings me to the second reason for writing to you. How did you get on, were you able to convince your consultant and if so how is it going? I would very much like to hear from you, to know all is proceeding well and indeed anyone else out there who may have gone down the sub cut path! You won't want to hear this Dai but I would also liketo take this opportunity to ask if anyone else did not ahve a particularly good response after 2 treatments, and where it went from there. I am feeling uncharacteristically down and this is where our support group on this site is so important. Love and good luck to you all Sylvia
Hi, sorry this is a late reply I have not visited the site for months for a variety of reasons. I am currently on my second course of treatment, Velcade after relapsing after only 6 months which was very disappointing as I had responded so well to the first treatment, only needing 4 cycles to get rid of PP completely. So returning so quickly was quite a shock. Anyway the interesting thing is I have my Velcade subcut,once a week for 4 weeks then a rest week.I have no symptoms, no Neuropathy, only tiredness.I posted this info months ago begging you all out there to speak to your consultants to have your Velcade this way. I am very lucky to have an enlightened consultant who knew all about it and he was equally delighted that I had sourced the info on the web and we could agree on the way to go.I am now in my 5th cycle,PP's coming down,now only 13, hoping not to have to do too many more cycles obviously and very much hoping it gives me a nice long remission which is of course the aim. I hope you had success on speaking to your consultant I would very much like to know how you got on. Sylvia Keen
Hi Tom, I think 15th April seems a bit optimistic but then we are aren't we? feel more like May so I will go for 1st May.Of things positive I have a 2 day break in Wokingham to come ( Chrissie pres to my fantastic hubby) so some sunshine would be nice then. Also 4 night mini-cruise to Cork in Ireland end of April so let's hope Gaye is right about 15th! As long as it is not wet and dismal that will do me. Love to you both. Sylvia x
