[DaiCroParticipant]

I mentioned earlier, in Gill's Velcade post IIRC, about hearing of Velcade being given subcutaneously – well this was posted in an American Myeloma Beacon email.;

'Subcutaneous Velcade Injections Show Similar Efficacy But Fewer Side Effects Than IV Injections For Myeloma Patients ? Results of a recent French study show that subcutaneous injections of Velcade (bortezomib) produce similar efficacy but fewer side effects for myeloma patients compared to IV injections. Dr. Philippe Moreau, the study?s lead investigator, first presented the results at the American Society of Hematology (ASH) annual meeting last December. The study authors compared the responses of 148 patients who received subcutaneous Velcade injections with 74 patients who received IV injections. They found that after receiving eight cycles of treatment, patients in both groups had similar response rates, median time to progression, and overall survival, but the frequency and severity of side effects were significantly lower in the patients who received subcutaneous injections! . For a more detailed summary of the results, please see the Beacon?s coverage of Dr. Moreau?s presentation at ASH or the study in Lancet Oncology (abstract).'

I have a consultant's meeting today so I'm going to bring it up.

Talking of which… this is the 'next step' meeting and I think it is going to be Velcade… so 🙂 >:-(

Dai.

[PerkymiteParticipant]

🙂 The best of luck Dai, I believe the answer will be, "yes, but in England we are always 5 years behind!!!".

Kindest regards

David

[DebsParticipant]

Good luck from me too Dai…hope you manage to persuade him….I'm wondering about asking Prof Morgans team when I go in next week as I already have PN from velcade…mildly I think (numb feet, and now slightly painful calves and arm muscles!), but I'm only on cycle 2 and you don't normally get anything till cycle 3 plus.

But I think I know the answer already……(esp since I'm on a trial!)

Debs x

[MinParticipant]

Hi Dai
If you go to the home page of of this site you will see an article on subcutaneous velcade from the Lancet Oncology, which hopefully will add some arrows to your bow when you see him/her. Good Luck and who knows you may be a groundbreaking Velcade patient.
Regards
Min

[BADGERParticipant]

hello Dia

Good luck for your next appointment hopefully you might not be at that stage yet:'-( I had a clinic appointment today and saw a nice new registrar He was Italian and we discussussed various things they are more advanced in Italy and have been giving velcade as a first line treatment for ages he said they also have had success with trails of subcutaneous velcade as David said we are always five years behind Thankyou Nice!

Love Jo 😎

[brochoParticipant]

Hi Dai good luck with the velcade issue , if we all ask about the sub-cu then maybe they will hurry it through here ! love Bridget x

[keenParticipant]

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

[DaiCroParticipant]

Thank you Sylvia… its good to know that the procedure has finally broken ranks in the UK.

I have mentioned elsethread that I requested subcut from my consultant at Nottingham and she said I may well get it during my treatment but nothing as yet. I have just finished Cycle 3 with a consultancy a week tomorrow followed by Cycle 4… I will bring it up next week… especially as the PN in my hands and feet are right on the edge of going over. My kappa light chains came down from 264 to13 in 2 cycles with the results of cycle 3 to follow… hopefully Complete Response (0). I will still need at least one more cycle so I will request subcut.

Like you I had an excellent CDT (Kappa light chains 3.500 to 0 in 3 cycles…. CR (full remission) in 4) but I only got 10 months from my ragamuffin SCT.

Thanks again for sharing Sylvia.

Dai.

[keenParticipant]

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

[tomParticipant]

Hi Sylvia

Sorry to hear its not that good for you on the "Velcade" but dont give up more can and will be done, I know it will get you down knowing that the response is not the one you wanted and hoped.

You are correct this site is for the Support just as much the Information.

Good Luck Sylvia hope your next lot works better.

Love and Hugs ((())))

Tom xxx

[mhnevillParticipant]

Hi Sylvia

So sorry to hear that after responding so well to the intial tratments of Velcade, and having so little side effects,that you have plateaued. As your PP is only 11 is there any chance of them leaving off further treatment for the time being till your numbers start to rise? I am sorry they are saying your MM is agressive although I'm sure I have read that it doesn't necessarily affect outcomes. I do hope that eventually they decide on another way forward that isn't too traumatic.

Of course yopu are entitled to feel down for a while, who wouldn't with this horrible MM, but keep fighting on, because you have stood up to the treatment so well it must bode well for whatever comes next.

Very best wishes.

Mavis

[keenParticipant]

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

[keenParticipant]

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

[brochoParticipant]

Hi Sylvia sorry to hear you had a down spell but very glad to hear you are feeling more positive . I usually find myself feeling down for a few days after hearing disappointing news or results but to be honest after a couple of days I think what the heck and carry on, because what choice do we have There are so many new things coming through and if your doctors are anything like mine they are fully on board loooking for new treatments all the time So keep on keeping on we are all there with you and if you have a down day just yell and there will always be someone on here to help you out of it Good luck with your next treatment love Bridget x

[keenParticipant]

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

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