[susieParticipant]

Just to put right my last post. I had a call from haematology early the next day to say the drug was ready for me to collect. She even kindly rang late that evening to check I had got them.

I am coming to terms with the fact I have to have more treatment. I hope it doesn’t affect me too badly. My spine has been very bad lately and I wonder if its the plasmacytoma becoming active again.

Best wishes to all

susie

[susieParticipant]

Thanks for your reply Kevin.

I’ve been really down since tuesday. It’s the melphalan that’s getting me so anxious, and I’ve had episodes of quite severe anxiety. So this morning I rang my gp to try and get some low dose valium, just to calm me down a bit. I’m sure my anxiety is fueled by me living on my own.

Anyway here’s a tale to show the NHS of today. My gp said they can’t issue pre medication drugs, I was to ring haematology, I ring haematology to be told there’s no reason the gp can’t give me something, I was to ring the gp and tell her if she rings haematology they will give gp permission, I was to ring the gp back and tell her to ring haematology which I did. I then get a furious call from the gp saying she’s fed up with all this, as she’s had this before, and she’s emailed the medical director to sort this out and I was to ring haemo again to tell them what she’s done.

So here we are this evening and I’ve heard nothing and have nothing to calm me down. All down I would say to budgets with the patient left to suffer. I’m left feeling more stressed than ever and don’t know what else I can do.

Best wishes

susie

[susieParticipant]

Hi Sue,

I was on the same trial though I didn’t have a transplant. I was offered maintenance and it took me a few months to decide not to have it. I’ve had 2 1/2 years drug free and feeling very well. I feel it’s allowed my body to fully recover and hopefully when I relapse, the disease may be more sensitive to the drugs. But that’s just my own thoughts.

I wish all the best

susie

[susieParticipant]

Hi Jan

Thanks so much for your reply. I found it somewhat reassuring.

My PP’s were 64 when I first started treatment. I had been monitored for MGUS for about 3 years with a PP of around 30, when suddenly it shot up and I developed excruciating leg pain (sciatic type) from what turned out to be a large sacral plasmacytoma. My bloods have been stable all along and I had no other symptoms. Luckily my treatment sorted it all out and I’ve been free of drugs for over 2 years now.

My consultant has recently retired and I haven’t met his replacement yet. I seem to be relegated to junior doctors for clinic appointments. I find it all very unsettling.

Thanks again for your input.

Best wishes

susie

[susieParticipant]

Hi Tony and Finnish

That’s interesting. I’m in biochemical relapse, have no symptoms and feel well. My PP’S have risen very slowly since I finished treatment over 2 years ago. They were at 48 some 2 weeks ago and the hospital has been saying all along when they get to 50 they will do imagining and maybe a bone marrow.

I can’t understand them letting it get that high before doing anything. Not that I want more treatment but I wonder if it’s all about cost cutting.

Best wishes

susie

[susieParticipant]

Hi Michael

Welcome to this site and sorry you’ve had to join us.

I had Revlimid and Dex as part of the Myeloma X1 trial. That was in 2014/15. With the first two cycles I did find it made me feel rather rotten although I’m sure a lot of it was down to anxiety. I knew little about Myeloma and its treatments, or what side effects were common. However, as the cycles went on, it seemed my body got used to it and I had less problems. In the first cycle it brought my paraproteins down from 63 to 17 and by the end of treatment they were undetectable. I have had 2 1/2 years drug free, so I think it was well worth it.

Unfortunately my PP’s are rising again and I shall be starting Velcade within the next few weeks which I don’t relish. Myeloma is very individual and what goes for one doesn’t go for someone else. My advise to you is to learn as much as you can about the disease itself, as it does help you cope with the treatment.

I wish you the best. You’ll find this site very informative and the nurses on the info line are so helpful.

Best wishes

susie

[susieParticipant]

Sorry my post was in wrong thread. Apologies.

[susieParticipant]

Hi,

I will be starting Velcade in the coming months. Can anyone tell me whether bloods have to be done before each injection ? Does anyone get their bloods done at their GP surgeries to save a hospital visit.

Thanks and best wishes to all

susie

[susieParticipant]

Hi Andy

I do wish you all the very best on your new trial. You deserve it.

Best wishes

susie

[susieParticipant]

Hi there. MGUS doesn’t always become active myeloma, but a few do. It took 3 years for it to happen to me. Most people go many years as MGUS if it progresses at all.

So don’t be worried. You will be monitored regularly for any disease progression.

Best wishes

susie

[susieParticipant]

Hi Jan

Thanks for that. I must have missed it. I’ll have a look. It’s good to know its there.

susie

[susieParticipant]

Hi Jan

Sorry to butt in here, I noticed you said Pomalidomide has now been approved by Nice. I thought they had taken it off the CDF and was only available on a trial. Can you tell me what their recommendations on it are ?

Thanks and best wishes

susie

[susieParticipant]

annlynn

That doesn’t sound too bad. So you’re going on holiday in the middle of your treatment then.
I hope you have a lovely time. Sounds as though the velcade has worked well for you, without too many side effects.

Best Wishes

susie

[susieParticipant]

Thank you so much for your kind words, they really help. I’m sure after a few days I’ll feel more positive, like all of us, I have no option really.

annlynn, How did you get on having the Velcade ? side effects etc.

Best wishes

susie

[susieParticipant]

Hi

I’ve been on Zometa for the last two and a half years. I’ve been trying to persuade my consultant to stop it, but all he’s agreed to is to have it every 8 weeks.

I’ve now got an abscess on a tooth root in my upper jaw. The gum is extremely swollen, very very red, and my dentist is referring me to the hospital to have it removed. I dread that this will become an osteonecrosis as I’ve heard its so hard to treat.

I would be really interested to hear others experiences.

Best wishes

susie

[Author]

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