Hi All

I had my hospital appointment on Christmas eve at the end of my 4 cycle. My PP’s are down to 4. I’m just so hoping they will be soon undetectable. A recent MRI shows the sacral plasmcytoma has reduced significantly. I’ve now started the 5th cycle and this time the consultant has stopped the cyclophosphamide so I ‘can enjoy Christmas, but…[Read more]

Hello

Thanks for advice. I wont take any then. I have taken Loperamide, the instant one, and it certainly does help quite quickly.

Best wishes

susie

Hi

I’ve had two BMB and I’ve had gas and air each time. It made it quite doable and leaves your system as soon as you stop breathing it. With sedation you have to have someone with you to take you home and stay with you. My advice is ask for G AND A. There is no reason why any hospital should refuse that.

Good luck and try not to worry too much

susie

Hi All

Recently I have been getting a lot of intestinal cramps. I’m wondering if the treatment has killed off all the good bacteria in the intestines. Does anyone know if its ok to take a good quality probiotic while on treatment?

I hope you are all doing well

Best wishes

susie

Thanks Dorothy

I shall ring my consultants secretary tomorrow and ask for copies of consult letters to my GP. Whether I will get them back dated I don’t know but its worth asking.
You sound to be so lucky with your consultant, mine is very pleasant to talk to but seems so vague, and has to be prompted a lot by the nurses. Still I suppose I…[Read more]

Just one question. Does anyone know if I am entitled to copies of letters that are sent to my GP ?
When I was being monitored for MGUS I always got a copy, but since my treatment started I haven’t had any.
Best wishes
susie

Hi Dorothy

My problem is my consultant, as I said, is very pleasant and easy to talk to. I don’t want to make an official complaint but I do feel an apology or explanation, should be given. He has always said from the start that he’d be lost without his nurses to remind him of things. I have wondered whether to have a word with my GP about how I…[Read more]

Hi Andy/Dorothy

Thanks for your input. I had my end of cycle hospital appointment yesterday, which to me seemed a disaster, again. I told consultant about my tongue, when I said there were no ulcers he just dismissed the problem, didn’t even look at it. Gave no advice at all. Then when I went to get my drugs there were only three drugs,…[Read more]

Hi Folks

I’ve developed a really sore tongue. It started with it being numb, now its sore but hasn’t got any ulcers. I cann’t taste various things either. I did tell consultant about the numb feeling, but he made little of it and told me to keep an eye on it !
Can anyone advise what I can do to stop it getting any worse. I rinse with mouthwash…[Read more]

Hi Andy

Thanks for your reply. I had my appointment yesterday and was really pleased to be told my PP’s are now at 8 after cycle 2. So I asked if I could have a break from the day 8 cyclophosphamide. My consultant was quite happy to do that and said he wasn’t convinced by cyclophos anyway. So hopefully my next cycle wont be so bad. Although I…[Read more]

I took my 8 day cyclo on Wednesday and have felt ill since despite it being a reduced dose. I see consultant next Tuesday and the way I feel at the moment, he is going to have to stop the 8 day dose. I don’t know why the day 1 has no effect on me, its only the 2nd dose. The difference being that the 1st dose is taken with Dex. I was told to take…[Read more]

Thanks Dorothy. I think the only reason the hospital wanted me to go to the further away one is because it is in the county cancer network. I don’t think it was they thought it was any better or worse than the hospital I wanted to go to. I’ll have to wait and see. My consultant is planning another MRI at the end of this cycle, so if the…[Read more]

Hi All. A quick update. I’m doing really well on this 3rd cycle tho I haven’t hit the 8th day cyclophos yet which is the one that seems to hit me. However, I’m hoping now its dose is reduced it wont be so bad. So for anyone out there starting on this MM journey, don’t give up in the begining. Nobody could have been more pessimistic than I was, In…[Read more]

Hi All and Andy

Andy I do hope you had the best time in Athens. Certainly sounds as tho you did. You deserve it.

Well I had the Zometa infusion and so far I haven’t had any side effects, so thats good. I won’t worry for the next one. They have started me on AdCal. I started cycle 3 today with the reduced dose of cyclophosphamide and so far I’m…[Read more]

Hi Nick

I’m sorry to welcome you to this forum but never the less welcome. You will find many helpful folks on here who will give you lots of info and advice.

I was interested to read your story which sounds similar to my own. I too was monitored for MGUS for about 3 yrs until I developed severe lower back pain with intense sciatica. I had an…[Read more]

Hi Andy

I’ll have the infusion and see how it goes then. I’ve just finished my 2nd cycle and have been quite poorly today. Spent half the night with epigastric pain every time I laid down so spent it sitting up. Today I’ve spent in the loo, I suppose its coming off the Revlimid. That seems to be my main problem with this treatment, most of my…[Read more]

Hello Andy

Thanks for your reply which I find encouraging. I expect you’ll gather I’m an awful worrier when it comes to taking any drugs. Once I’ve taken them for a bit I’m ok but until then I just seem to look at the worst side effects they give, daft I know.

When you had the Zometa was it infused over 15 mins, coz I’ve read the flu type side…[Read more]

Hi Gary,
I don’t seem to get any nauseaa or sickness with the cyclophosphamide. I take a metaclopromide with it and it seems to do the trick. My problems happen the day after I’ve taken it, I get the cramps with intensive diarrhoea and the feeling I’m going to pass out, which makes me feel really bad. However my consultant has lowered the dose…[Read more]

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…[Read more]

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…[Read more]