[susieParticipant]

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

[susieParticipant]

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

[susieParticipant]

I’m sorry to hear this news Tom. I wish you the best and hope they get you into remission as soon as they can.

Keep your chin up and keep to Tom senior’s saying.

susie

[susieParticipant]

Hi Mel

Welcome to a very good forum. You will find lots of very knowledgeable friends on here.

Try not to worry about the Bone Marrow. I have gas and air when I have mine and its really not too bad with that. You can ask for sedation but I don’t think all hospitals give it–takes you longer to get over the sedation than the BMB.

Wish you the best and hope it goes well

susie

[susieParticipant]

Hi Karen

You say your results are going up. What is your paraprotein . If your fatigue is fatigue, surely that would be a symptom. I don’t know where you’re being monitored but I was monitored for MGUS for 2 or 3 years before I suddenly became active. My pp’s started at 30 but a bmb only showed 2-3% cells, but I now think I must have been smouldering for some time and I too didn’t have the energy I used to.
How often are you monitored now.

I wish you the best. This is such an awful desease isn’t it.

Take Care

susie

[susieParticipant]

Hi Karen

Well I finished my first cycle and I have to say it was worse than I thought it would be. Apart from feeling quite unwell, I had this awful headache all the time, together with vision problems which became more frequent as the cycle went on. I found it very frightening, and was worried my eyesight was going to be affected. However, on my rest week it began to disappear and the headache went. So I start cycle 2 tomorrow, not looking forward to it, but I just hope its not as bad. I thought it was the Revlimid. Saw consultant yesterday and he was happy to reduce the dose but I felt it worth persevering for the next cycle and see if its not too bad. He’s referring me for radiotherapy for the plasmacytoma I have on my sacral spine and he agreed to start me on iv bisphosphanates instead of tablets. I don’t feel I can take any extra pills.

How are you getting on? Have you had any more tests, if so I hope the figures are stable.

Best Wishes

susie

[susieParticipant]

Signed. I hope you get good result. Best of luck.

susie

[susieParticipant]

Hi Gary

thanks for your reply and all the info you gave me. It sure helps to hear other peoples reactions to all these drugs. I wait to get a build up of side effects but I do hope I don’t have to approach your 22 cycles.

I wish you the best

Susie x

[susieParticipant]

Hi Gary
Thanks very much for your info. Its good to know I’m not unusual in what I was feeling. It was just so scary to feel like that when I hadn’t been warned, but I’m ok now.
I was already on Lansoprozole for hiatus hernia but I didn’t know if I could take some Gaviscon, which I can.
You say to take the cyclophosphamide after food but I was told on empty stomach with a metaclopromide which I did and I didn’t feel sick or nausea. It was just that it made me feel ill.
I’m taking the Dex 4 days on 3 days off, so does that build up with each time you take it then ?
Also does the Dex make you feel spaced out ? it makes unable to concentrate.
Every day is indeed a gift
Very best wishes
Susie

[susieParticipant]

Hi Gary
By the time yesterday evening came I felt absolutely awful. I’d had a peculiar headache all day, I looked totally dreadful, and felt it too. Didn’t think I would feel so bad on the first day. The CNS told me I wouldn’t feel side effects for about a week. I spoke to my CNS today who told me I can take paracetamol and Gaviscon for the intense reflux I had in the night. I’ve had 2 days of Dex but I can’t say I’ve been boosted with high energy. All its done is make me feel totally spaced out. I’ve taken it easy today and do feel somewhat better for it. I know I’ll get used to it all.
I do sympathise with you taking 40 dex. is your system used to it after so long?
Take care of yourself
Susie x

[susieParticipant]

Hi Gary

Thanks for your reply. It quite cheered me up.
I started my treatment this morning. I think I’ve taken 26 tablets, I’m puzzled why the tablets are so small strength, meaning I took 10 Dex (2mg) and 10 cyclo (50mg), weird. at least tomorrow I don’t take the cyclophosphamide. I’ve carried on as normal plus drinking like a fish, washing hands +++ etc. I have felt rather woozy this afternoon but I suppose thats normal after such a concoction of drugs.
Well as Tom always says “onwards and upwards”
Love to all
Susie

[susieParticipant]

Hi
Well I went for my last pre drugs consult and to collect the drugs as well as having the CNS explain everything. I can’t remember half of what she said and am totally gobsmacked by the drugs they have given me. How people get their heads round it I don’t know, I’m still trying to put together some sort of chart so I know what to take and when.
I’m on the RCD myeloma 11 trial so I expected to get the 3 drugs plus perhaps an anti-emetic. But I’ve also been given Aciclovir, Allopurinol, and Co-trimoxazole (which if I remember, I can’t tolerate). Plus the Fragmin injections.
Has anyone else had these other drugs ?
I am just so overwhelmed by all this. I live on my own, so I hope you don’t mind my venting my anguish on you lovely folks.
Susie

[susieParticipant]

Hi Karen

I’m sorry to hear the problems you are having getting a diagnosis. Its so worrying I know.

What is your paraprotein and have they done a bone marrow. All I can say is what was told to me and that is, if the cytoma wasn’t there I too would be a watch and wait but shorter monitoring periods.
Where did you get your second opinion done.

All the best, I shall be thinking of you.

Susie

[susieParticipant]

Hi Mike

Thank you for your reply. My MRI had been reported on by a Neuroradiologist saying I had a herniated disc, several compressed discs, and an L1 compression fracture, but from the sacral bones down, “all was normal”. That gives a person confidence when a few weeks later my haemo consultant tells me I have a Plasmacytoma the size of a tangerine on the sacrum. My paraprotein is now 56, Plasma cells 10-15%, so I am now officially myeloma. I have agreed to do the Myeloma X1 trial, but have decided against doing the TEAMM trial which is levofloxacin. I’m also having Fragmin, but I am a bit puzzled why there has been no mention of me having bisphosphonates.

I do hope October brings you better new and you are able to stay away from treatment a bit longer.

Very best wishes

Susie

[susieParticipant]

Hi Mavis,
I have decided not to do the antibiotic trial. I researched the drug and the side effects/interactions are beyond belief. I know its probable I wouldn’t get them, but the risk is there and I don’t want that risk. I’ll have side effects of my treatment to contend with which is enough.
Bye the way, they wouldn’t stop shingles coz that’s caused by a virus and anti b’s don’t have an effect on viruses. Thank you for your advise tho.
Best wishes to all
Susie

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