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…[Read more]

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

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…[Read more]

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…[Read more]

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…[Read more]

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

susie

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

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

Hi. I had my CT and skeletal survey and apart from a few very minor lesions he said nothing to worry about. So its only the Plasmacytoma to worry about. My consultant showed me the scan, the tumour is really big, no wonder I’ve had pain. I start treatment next week on the Myeloma 11 trial, they have also offered the TEAM trial that runs along side…[Read more]

Thanks so much for your replies. It really helps to know there are people out there who know how a person feels in these circumstances.
My consultant has just phoned me. Apparently they are more concerned about the tumour on my sacral spine. He said it is rather large, the size of a tangerine, and it was missed by the physio team that took the…[Read more]

I’ve had the BMB and it wasn’t too bad this time. With the gas and air that is. I go back next week for the final diagnosis.
What I want to ask is, has anyone been treated at Wycombe Hospital or at the cancer centre at Stoke Mandeville Hospital ?