I had six courses of Velcade, Dai, and they lasted me 14 months before I had to start the latest round of treatment. I was very reluctant to go on Revlimid and asked to have Velcade again on the principle of "better-the-devil-you-know". However, after a horrible first month this has been so much easier, ie. no twice weekly trips to the hospital and less side-effects. I shall be delighted (that may be a bit too strong!) to stay on it if it continues to work.
Hope Velcade works as well for you as it did for me,
Jen.
Dai, the very first report I read about Velcade being administered subcu was headed "Not to be released to the British Press". (I'm not sure if it was on the link I sent you some while back.) That says it all, doesn't it?
However, it's really worrying when specialists haven't even heard about the latest research. Surely if we can find out what's happeniing, they should be able to do so.
Re. the diarrhoea. I did have bouts of it when I was on Velcade but nothing as bad as people here have reported. I also found that it continued for at least a year after I finished the treatment, so that may be worth bearing in mind.
I am on Revlimid at the moment and after a bumpy start it's been great. My pps have fallen from 40+ to 4 after three cycles. Fingers crossed they drop to zero!
Jen.
Hi Dai,
I mentioned the use of velcade subcutaneously a couple of months ago. There was a report of a paper given at the ASH conference stating that it was almost as effective used subcu as it is when given intravenously, and that the side effects were greatly reduced. I do have a link to the article but each time I try to add it to a post on this site the whole message disappears. If you'd like the link then email me on:
Sues9491@aol.com
I did ask my consultant about it when I knew that I would need more treatment. (I'd had Velcade before and found it highly effective so wanted to know if I could have it again.) He knew about the report but said that they were monitoring the situation in the UK. Maybe you will get a more positive response.
Jen.
Hi Bridget,
Just wanted to know if you are still feeling better than you were. I am about a month behind you in terms of treatment (on second week of second mth of Revlimid +Dex)so it is interesting to compare how it has been affecting us.
I feel tons better since the dosage was dropped to 15mg and even think I have cracked – well, partially! – the Dex effect. I have always taken Dex first thing of a morning, re. instructions. However, this week I have been doing a lot of babysitting for my new little grandson and handling a small baby when you have the shakes is not a good idea. Consequently I have been taking the Dex at tea-time and it has been so much better!
When the worst of the shakes starts I am sitting down, on the sofa, so no problem there. And when I go to bed the worst of the energy rush hasn't yet hit me so I sleep. Then I seem to be full of energy the next morning and through the day, meaning that I have never stopped catching up with jobs that have been waiting to be done for ages.
Taking Dex this way was meant to be a one-week-only idea but I think I shall continue with it.
Do let me know how you are faring.
Jen.
Debs, I had 6 courses of Velcade. I couldn't have the very final dose as the soles of my feet went numb so they decided not to give it to me. My feet did recover, well, back to what they were before, anyway, so it wasn't a problem. And I felt great after all the gunk had got out of my system!
With you having such young children then obviously you need to explore every option. My family is grown up and the thought of feeling so ill after the SCT, and maybe not being able to look after myself, has been the most off-putting thing about it. I am keeping it as a final resort but definitely haven't ruled it out.
I am with you with the glowing dex cheeks. I look as though I spend my life outdoors in all weather! I take the dex of a morning and the Revlimid at night but haven't been sleeping well this week. Hopefully, I shall get a few hours tonight as it's a non-dex day.
Here's hoping the Velcade works as well for you as it did for me.
Jen.
Hi Bridget. It's good to hear that you are feeling better too. I had my first "normal" sort of a day yesterday since I started the Revlimid – dog-walking, working, then gardening – and it was so great to be able to get on with life. Although I am still a bit achy the pain has dropped back to its more usual level and is bearable. Onwards and upwards.
Jen
Hi Debs,
I just wanted to say that I found Velcade very effective. It batted down my pps from 46 to 3 – way lower than CDT ever got them. I also tolerated it well and was able to live a "normal" life if you factor in the twice weekly visits to the hospital.
Of course there were a few glitches but nothing major and they were sorted out without much trouble. I am still debating going down the SCT route and as I felt so well after the Velcade I once again declined. I managed 14 months without needing more treament and am now having Revlimid. Let's hope it is equally effective!
Jen
Hi Min,
It sounds as though Peter has been going through the mill recently and I hope he soon picks up. The worst of my aches are starting to ease off, and I don't feel quite as stiff today, thank heavens. Mind you I have only had two tablets from the new reduced dose of Revlimid so things could change!
I find the worst thing about the Dex is that it gives me the shakes. I feel a bit hyper on the first day but that settles down; however, there is always a fine tremor running through my system that is so irritating. Still, hardly a life-threatening effect so I shouldn't complain.
I hope Peter gets through his third session without too many nasty side-effects. Having you there to help and encourage him will make a huge difference.
Jen
Hi! I was just about to post and ask how many folk on Revlimid had suffered from horrendous muscle and joint pain when I saw your post. I'm glad it isn't just me :>
I've been on my week off and hoping that things would improve, which in all honesty they have done, but I am still so stiff and sore that I wince every time I need to move. Mornings are worst as after I have been lying in bed all night it feels as though my torso is wrapped in a concrete corset. Will these symptoms lessen in time, does anyone know?
I was started on 25mg of Rev + Dex but asked my consultant on Friday to lower the dose to 15mg in the hope it would help to alleviate some of the side effects. However, I must confess that the thought of feeling like this long-term isn't very appealing. Is there some hope that this stiffness and soreness will improve?
I noticed reading through the posts on this topic that someone mentioned kidney problems. My husband suffered from polycystic kidney disease so we learned a lot about looking after kidneys. One thing that can help enormously is to avoid caffeine. I drink decaffeinated tea and coffee, don't drink cola (no hardship as I hate the stuff!) and don't touch power drinks. It may help, although I am certainly not claiming that it will sort out all the problems associated with this wretched disease.
Jen
Hi Wolf,
Yes, I was told to take the Revlimid at night and took it last night at 10pm fearing the worst. It was fine. Didn't need the sick bucket on standby or any of the other measures I had taken, just in case. In fact the only problem I had was that the wretched dex makes me hum and I couldn't sleep. I was still clock-watching at 4.a.m so only managed a couple of hours before the dog needed to pop out to the garden.
How strange that dex has a different effect on you. It always gives me the jitters and makes me feel as high as a kite. In fact I was hoping that the Revlimid would counteract it but that theory went by the board :>
Re bloods: I have mine taken a week before I am due to see the consultant. That way all the pp info is current. It works well and isn't a hassle. I just pop into the phlebotomy depart with a pre-printed blood work form and that's it. Obviously every hospital has its own system.
One thing that surprises me about this new treatment is that not such a close check is kept on bloods. When I was on Velcade my bloods were checked before every dose and done on the day. With the Revlimid I will just have my bloods checked the week before I return to clinic, which will be in a month's time. I am not objecting. You waste far too much time running back and forth as it is. It just surprises me.
Jen
It's so interesting to read everyone's comments on their experiences. I have to confess that I am dreading tomorrow night when I shall have to take the first dose of Revlimid. My biggest concern is the fact that I couldn't tolerate thalidomide during my induction therapy. I certainly don't want to lose my voice again or end up with numb lips and the tip of my nose!
Bridget, it would be great if I could see the same consultant at least twice. Unfortunately, my hosp cannot manage to find a permanent consultant willing to take on the post and has to make do with locums. They have varied in ability from the chap who asked me to tell him about my condition because he knew very little about myeloma to the Polish doctor I had during my Velcade treatment – he really knew his stuff and inspired confidence in me. The doctor I saw last week seemed very competent too but will he stay? I shall have to wait and see, I suppose.
Jen
Hi Wolf,
I am due to start Revlimid on Monday so it was interesting to read about your experiences. At least I shall have an excuse for acting slightly batty from the sound of it!
I'm having 25mg of Revlamid, plus 20mg of dex (it was supposed to be 40mg of dex but I argued that it was too much based on previous experiences, so the haematology nurse and I agreed a compromise)I shall have to see how it goes.
Not sure how long I shall be on it. The doctor I saw on Wed said six cycles and the nurse I saw on Friday said until it stops working, so I shall have to wait and see who wins that argument. Mind you the doctor is yet another locum so he will have disappeared before I reach the end of the proposed course, if not sooner. It would be lovely to see the same doctor twice!
Keep fit and well
Jen.
Min, thanks for your encouraging words. I have my fingers firmly crossed that 1/ it works and 2/that it won't cause too many side effects. As you say, the good thing is that I won't have to visit the hosp. twice a week, although I do find it surprising that they let you trot off and take it without constantly checking your bloods, as they do with Velcade. It's not that I enjoy donating some of the red stuff but it just strikes me as strange.
The pharmacist who handed over the Revlimid was on a high. He had never dispensed it before and appeared to be rather in awe of how much it cost :>
It was nice to know that I had made someone's day!
Jen.
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.
Fortunately, I've not had any problems re my veins. The nurses always manage to find a decent one without having to resort to the warming up method (in my area this is a bucket of hot water – nothing as fancy as an electric warmer up here!)I have seen other patients suffering as the staff try to get a line in so sympathise with you all for having to go through the added strain.
Let's hope that if more people ask about having Velcade administered subcutaneously then it will become accepted practice in the UK. If it helps lessen side-effects and means that more people can benefit from this treatment then it can only be a good thing.
Jen
