Andy

I am just so pleased to read that things appear to have finally turned well for you. I shall be watching with hope that all goes well for you. You deserve it. Certainly you have helped me in my early days of treatment for this MM journey and i’m sure that goes for others.

Best wishes

susie

Hi Jeff,

I attend Wycombe General. I was monitored there for MGUS for a few years before it became active myeloma together with a plasmacytoma on my spine. At the beginning I felt confident in the care but as time has gone on things seem to be more and more slap dash, especially when it comes to drugs. I find some are omitted on one cycle then…[Read more]

Thanks Andy. I’ve always picked alcohol free mouthwashes. I shall bear in mind the salt water mouthwash. At the moment I’m using Cordosyl daily (dentist recommended) as it is for preventing gum problems. I have 2 weeks to go till my next hospital appointment when I will question them about the whole thing.

Jeff, Sounds like you were you not told…[Read more]

Hi All

Happy and a healthy New Year to everyone.

I’ve read on here that when on Zometa it is important to keep up dental hygiene, and to use prescribed mouthwashes. My hospital has never mentioned anything about dental problems or preventions. They didn’t even advise me to get a dental check before starting the infusions, which I did off my own…[Read more]

Hi Dorothy}

Thanks for your good wishes. I shall be keeping my fingers crossed for your MRI and team appointment.

I wish you a healthy and happy new year too.

Keep Well

susie x

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

Hi Stanley – Congratulations looks like Xmas has come early for you. Fantastic results – top of the class – believe its only 5% who manage SCR so you’ve passed your most important exam with flying colours! With a Stringent CR I am sure you can lock this away and get on with life with a bit more of a spring in your step. Great news hope you’ve had…[Read more]

Hi Richard, Just wondering as people do mention shortness of breath – do you know what causes it? as I’m not sure but are you treatment free for now. I know some get it with velcade but I never did but have heard it crop up a few time now.

Rebecca

I am truly sorry to hear this news and hope you can carve a new/different life for yourself and family whilst holding on to all the good memories. Life is so precious and is for living – so I hope you eventually manage to live it large – for the both of you. Best wishes n cyber hugs.

Rebecca

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 Mike, I totally agree with what you are saying and wondered how you see it panning out for us now with the change of criteria for usage/and the Cancer Drugs Fund changes? Been mulling this one over reluctantly as a lot of patients are excluded from trials due to various reasons.

Rebecca

Thanks Chrissie, you are giving your children the best possible childhood and that is being swathed in love and stability and if things change in the future then they will cope because they will have a deep sense of love and worth and grounding that will see them through any tough times. But don’t be too pessimistic you are at the smouldering…[Read more]

Hi Bernard, I was 51 at SCT and I really think you will sail through it and your recovery will be quick and easy – don’t underestimate a “youthful/fit” body in the SCT equation – expect you’ll be out in 16 days. I was told afterwards 3 weeks is quoted so people don’t get disheartened etc and was told 18 days is the average. I don’t think there is…[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]