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Dorothy 9 years, 2 months ago.
I’m half way through cycle 2 of RCD (on Myeloma 11 trial) and I seem to be getting so many side effects. Having been told by my consultant in the beginning that ‘most people sail through treatment’ I don’t know if I am unusual in reacting to all these drugs. It seems my whole day is taken up with what tablet to take and when. I live on my own and find this journey just so hard. After the cyclo yesterday I have today felt so ill. Had the runs +++ and nearly fainted earlier. Hospital thinks its the cyclo but I started an oral Bisphosphonate the other day, so I don’t know if its that. I’ve never been a one to take tablets if can be helped, so all these have come as an awful shock to my system. I can’t get my head round how the body copes with so many different drugs. Apart from the trial drugs I’m on, anti virals, anti fungal, septrin, as well as the Bonefos.
I’m so low today I just needed to rant and I know the good folks on here will understand.
Also has anyone any ideas on coping with hand and leg cramps which I get when I come off Dex ?
Sorry for being a misery
susie
Hi Susie
I am fortunate to have wife as my carer and for support. I don’t know how I would have got through without her. I was diagnosed in May 2012, had my SCT at Christmas and now am fortunately on Maintenance X1 trial drugs Revlimid. I an having a bad week and am very tired with lots of aches and pains at present so Myeloma never goes away.
I can only wish you well and hope that you can find someone to support you through your fight with Myeloma.
My thoughts and best wishes are with you.
David
It seems very unkind of your consultant to say that most people ‘sail’ through treatment. Also not true – people vary hugely in their reactions. But you will find that you get used to the complicated drug regime and better able to cope with it.
It sounds as though you need support which you aren’t getting. Have you got a Maggie’s Centre anywhere near? They are lovely places and there’ll be people you can talk to.
Hi Susie
I can understand you feeling low. I think your Consultant was probably comparing your regime with mor drastic chemotherapy which is in another league again, BUT, HE/ isn’t the one on the RDC!
Hopefully things will get better for you and it could well have been the addition of the Bonefos that made you feel worse.
I was on CDT, but the only way I could cope with all the tablets, different number and type each day, was to make a chart. I did loose my Sense of taste of certain foods and did get shingles once and a week of sickness, BUT, having said that, following six regimes of tablets, I have been in remission for over two years with no SCT. So it was certainly worth it.
It’s not an easy ride but hang in there. If the side effects get too bad do go back, don’t grin and bear it! They can always adjust your dose or give you a break.
Keep posting if you are still fed up.
Lots of love.
Mavis x
Hi, Thanks for your replies. I guess the other day was a sorry for myself day. The Cyclophosphamide certainly seems to affect me. I have felt really ill since taking it on Wed. My CNS said they can adjust how I take it, so I have an appt on Tuesday and I’m just hoping whatever they prescribe will enable me to take it without such awful side effects. I am today beginning to feel a bit better. I’m not going to take the bisphosphanate until I’ve seen consultant as I really don’t think my guts will take anymore tablets. They have said I can have Zometa infusions, tho it does worry me coz I’ve read the side effects can be more serious. Does anyone know if its absolutely essential to have this type of drug.
I’m still getting bad cramps in my hands and legs. How do others cope with this problem.
Best wishes to you all.
susie
Hi Susie
You ask about Zometa. I suppose the question is, have you already got MM bone involvement? Usually shown by full body X-rays. If you have the sooner you start to take Zometa the better. As I have said in another post, I have been on it for about three years and it has prevented any breaks which my Consultant feared as my skeleton is full of lessions (holes)!
However if you haven’t got bone involvement yet, if I was in your position I might be inclined to ssk them to delay Zometa for a couple of months.
Having said all this I wasn’t aware of any side effects from oral Bisophonates, but obviously they weren’t that effective at preventing more lessions. The advantage of Zometa is that Trials have shown it has a bonus as also having a slight anti-myeloma effect. I only had side effects after the first infusion, flu like shivering.
Glad you are discussing a reduction in your dosage. I think it is important to remember that you are a player in the decision making about your treatment. You don’t have to see it as a conveyer belt. Your strength is in gaining as much knowledge about MM and also the latest thoughts.
Bless you on your journey.
Mavis x
Hi Susie,
I too suffered from cramps. I mentioned it to my consultant who prescribed quinine tablets. Alternatively, it was suggested that if I didn’t want to take another medication I could drink a lot of tonic water as it too contains quinine – but she couln’t quantify what a lot was ….just to drink like a fish. I took the tablets and didn’t look back.
All the best,
Peggy
Hi Susie..I too suffer from cramps especially in my rib areas ( on the site of old lesions caused by MM ) and was also given Quinine tablets and I must say ” touching wood ” they seem to have done the job…good luck in your decision making…Phil
Hi All. I had my hospital appointment today and it went better than I could have hoped. My PP’s have dropped from 62 to 17. At least all my suffering has shown a result. He’s dropped the dose of Cyclophosphamide to 300mgs so I just hope it doesn’t have the same awful effect on me. They’re also starting Zometa infusions on my next appointment. I’m quite nervous at it in case I get side effects from that as well. Anyone got any tips on how to prevent them.? I asked what time they infuse it-15 mins was the answer.
Best wishes to all
susie
Hi Susie
That’s good news about your PP readings. That is a really good fall in the right direction. Let’s hope the reduced dose of the chemo drug will reduce side effects.
I don’t remember anyone on here complaining of long term effects of Zometa infusions. As I have said, I had shivery episode after first infusion, but since then have been fine. Each of my infusions take about 15 minutes plus a couple more to flush the vein.
Hope things continue in the right direction. Hang on in there!
Best wishes.
Mavis
Hi Susie,
Great news about the pp drop. My husband Phil has his zometa infusion over 20 minutes instead of 15 as we read somewhere (it may have been on this forum) that the side effects of zometa are reduced if the infusion is done more slowly. Phil just asks the nurse each month to do this and they set the drip accordingly. Phil has been on monthly zometa for over two years now and has never had any problems with it. The possible side effects are flu like symptoms. This is not a long term side effect just a day or two after the zometa and not everyone experiences it.
Megan
Hi Susie
Do not fear the Zometa Infusion it is pretty painless apart from the needle for the drip. I have never had any side affects from my monthly infusion in the past year. I drive myself to the appointment and have never had any problems. The nurses at The Pines clinic Darenth Valley Hospital, Dartford are brilliant and make it a pleasent visit.
Glad to hear you are feeling better now with the good results.
David
Hi Susie,
Good news on the results, well done! I completely understand your worries about all the drugs you have to take. Do you have some anti sickness tablets to help with the cyclophosphamide? If so make sure you take them the day before as this makes them work best – they damp down the thing (!!) in your brain which causes nausea. My Mum takes her cyclo on a Monday morning and she has an anti sickness tablet on Sunday night, Monday morning and Monday evening. This seems to do the trick for her.
Mum also has the monthly zometa and has never had any side effects but it does work well to keep her bones strong.
All the best,
Jill x
Thanks for your replies. I think my worries come from me seemingly reacting so badly to the drugs so far. But I take on board that none of you have had any desperate side effects from the Zometa. So I will wait, see and hope I don’t as well. I’ll ask if it can be given a little slower if only for the first time, but I wont hold my breath.
Best wishes to all
susie
Hi Susie.
I was on RCD for 22 cycles the main problem I had was three days of nausea post Cyclophosomide day. The nausea wasn’t too bad or maybe I just got used to it. I too got cramps mainly at the end of each cycle I didn’t take anything for them I just used to stretch them out as I still have to do now with Pomalidomide.
As for Zometa I sometimes got flu like symptoms which weren’t too bad however I also got osteonacrosis of the jaw, which is a well known side effect of Zometa so I’ve had to have it stopped.
Hopefully once everything settles down you will get to SCT without any major problems.
Every day is a gift.
Andy xx
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