This topic contains 15 replies, has 8 voices, and was last updated by 
Jentay 13 years, 3 months ago.
Hi! I am new to the discussion board so please bear with me if this question has been asked before. I had a course of Velcade in 2009 and it was fine. I tolerated it really well and it definitely did its job. My paraproteins are starting to rise again so my doctor is talking about more treatment and I would like to have Velcade again as it was so successful first time round. What I would like to know is if any of you have had it more than once, and, if so, did it work as well?
Thanks for any info you can give me.
Dear Susan – yes, I have had velcade twice. Once to prepare me for my first SCT and the second as treatment on its own along with dex. It sounds as though it really suited you well. I had a gap between both treatments of about 2 – 3 years. Your doc may well want to try you on something else so just ask him all the questions you need to know. What are the pros and cons of having velcade so soon. Should you have a break before going back on it – at least you know it works well with you.
I would say that it didn't work as well the second time round because my body had taken quite a bashing before and therefore not so resilient as the first time. But, that isn't to say it will be the same for you. I don't know if many people have yet had the opportunity to have velcade more than once. I did because I was on a clinical trial.
Susan I am sorry you are relapsing. Please keep us informed what treatment you will be going on
Love, Gaye x
Hello Jentay,
Yes, my wife Cecilia is now on her second course of Velcade. The first course, which included the dreaded Dex was particularly harsh on her, but it did the business. However, after about three months she had to come off it because the adverse effects were too debilitating. That was about one year ago. Now,after Revlimid for a few months, and a long break from any chemo, she is now back on Velcade (half the dose and without Dex and only once a fortnight)and is doing quite well. Much better than before.
So, I hope this info gives you some sort of comfort. Of course, as we all know, MM treatment seems to be so for each person. Wishing you the very best of luck.
John
Thank you for your replies. It looks hopeful if at least a couple of people have been "allowed" to have Velcade more than once. I am working on the theory of better-the-devil-you-know which is why I am pushing for it.
I was diagnosed in Sept 2008 and the first lot of chemo was a nightmare – I have never felt so ill in my life. I was terrified of what would happen when I was told that I needed more treament in 2009 and pleasantly surprised when I tolerated it so well. Obviously, there were side effects but nothing I couldn't cope with.
I'm not due to see my doctor for another couple of weeks but I shall keep you posted.
Jen
Hi Jen I recently asked my doctor about the rules for using velcade againThe reply was "Theirs always a way to get what you need dont worry" I believe this approach is fairly common , and our doctors are very well practised at using different approaches to get us drugs they prescribe At UCH London which is a teaching hospital velcade is readily available for second and third lines of treatment when it has been effective previously Good luck with your treatment best wishes Bridget
Dear Bridget – I love the casual way your doc says there is always a way to get the drugs you need! I like him/her.
When NICE gave the OK for Velcade to be used it excluded it for first line treatment using it only after relapse. As time goes on I think we will see more and more people going on it for a second time, particlarly as they can reduce the dosage and the dex.
Good luck Jen.
Love, Gaye x
Hi Bridget
I don't know if anyone else is worried but I am about the GP 's holding the money will they be willing to fund second and third treatments or even first expensive ones will we all be fighting the system agsin
Love jO :-S
Hi Jen
My mum had velcade in 2009 as part of a clinical trial before her sct after she stopped responding to her first chemo regime. She restarted velcade in August 2010 when she relapsed. She initially had it twice a week but responded so well they reduced it to once a week after 2 cycles. Last time on velcade she felt very tired and had numbness in her feet after 2 cycles but this time she hasn't had any side effects and has been very well. Her levels are better now than they were last time she had velcade. She is on her 6th cycle at the moment.
Good luck and keep us posted.
Best wishes
Georgina
Thanks everyone. It sounds as though obtaining Velcade for a second time isn't merely a pipe dream. I had feared that funding wouldn't be available for more than one round of it.
I shall definitely hold out for it, if and when it becomes necessary.
As for GPs being responsible for the drugs budget then it does send a shudder down my spine, too. My GP is great but he isn't an expert in all the fields of medicine. Hopefully, common sense will prevail and GPs will be influenced by the views of the various specialists.
Jen.
I share all your concerns about GPs running the NHS budget but as I see it, it's rather like revamping the PCTs to be clinically led rather than by administrators as happens now. They will be consortiums of GPs, not packed full of them, so dissenting GPs do not have to sign up to become one of them, just reluctantly be part of the new system.
I think as a nation and individuals we all hate change feeling that what is to come is going to be worse than before. We also really don't understand what it will involve and that makes us anxious. I am going with the flow on this one and hope for the sake of patients and the nation alike it will continue to improve the health service.
And hereby endeth the first lesson!
Love, Gaye x
Dear Jen
Just picked up this strand. Sorry I can't help you as I haven't had any chemo yet, but do hope you get the second dose yuou want as it agreed with you.
Can you help my learning? What was the first regime of chemo you had, which didn't agree with you? Also, what numbers of para protein jogged your Consultant into action on each occasion? My pp is currently 7 and I am hoping thet, if it keeps at this level in the immediate future, I can hold off having chemo. Your input will be welcome.
All best wishes to you.
Mavis
Dear Mavis,
I had CDT the first time round (cyclophosphamide, dexamethasone and thalidomide)I reacted badly to the thalidomide – throat, mouth and lips went numb and I was covered in a rash – so that was stopped. The rest made me feel dreadful, extremely weak so that it was a struggle to look after myself. I'm a widow and live on my own so being able to look after myself is very important.
My pps were extremely high when I was diagnosed: 76. CDT brought them down to 16 but that lasted just a few months. They were in the 40's when I was put on Velcade which brought them down to 3, a much better result. They've been low for a year but have suddenly shot up to 28, which is why we are discussing treatment. However, my consultant did say that he would consider everything as a whole, i.e. the fact that I feel quite well, before he puts me back on treatment.
Hope this helps and that you can put off having treatment for as long as possible.
Jen
Dear Jen
I'm very grateful for your answer, and so promptly. It gives me a much better prospective on things.
I feel for you having to cope on your own. I am very fortunate to have a husband who does all the cooking and fetching and carrying, as I also have chronic arthritis, which was what masked my MM in the beginning.
I do find this site so helpful and I have also booked to go on the Information Day, in Bradford, in March. I hope I may meet up with some of you who post then, although most folk seem to be based around London or in the North East.
Hope you manage to stave off treatment for a while longer. Do let us know how things go and whether they do eventually put you back on Velcade.
All best wishes.
Mavis
Just to let you know that I saw a doctor (no point saying [i][b]my[/b][/i] doctor as I had never seen him before) on Wednesday and the long and short of it is that they will not give me Velcade for a second time. Oh, I argued my case but the decision had been made that I should have Revlimid and that's what I will have, that plus dex. I refused to have cyclophosphamide as well as it makes me feel so ill.
I start the new treatment on Monday night and have my fingers crossed that it won't cause too many side-effects. I couldn't tolerate thalidomide on my induction therapy (lost my voice, nose, mouth and lips went numb plus had a rash)but everyone keeps assuring me that revlimid will be different. Hmm. A case of suck it and see.
All I can do is hope that it works.
Jen.
Hi Susan,
What a shame that you cant have velcade, but cheer up, as you wont have to sit around in clinics waiting for bloods to be counted and chemists to make up your velcade. You can sit in the comfort of your own home and take a tablet instead.
All the trials have shown that it is a remarkable drug if it works on you and if for any reason it does not you can go back and demand your velcade and say I told you so!
My husband has just finished his first course of Revlamid after velcade stopped working and he has had some problems but not too bad. Good Luck
Min
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