[susieParticipant]

After months of an increasing paraprotein, now at 54, Ive been told today I have to start more treatment in a couple of weeks. And I am totally gutted. This is my first relapse and I will be on Velcade, Melphalan, and Prednisolone.

I live alone and my induction treatment ( Myeloma X1 RCD ) hit me hard in the beginning and scared the living daylights out of me, a lot of which was pure anxiety. I am just so apprehensive of this new treatment I know how scared I am going to be. I knew I would be on Velcade but why he’s added melphalan I don’t know.

Has anyone been on these drugs and if so how did it effect them ?. I hate being so weak but I can’t help it. I’ve always hated taking drugs of any sort, let alone these powerful chemo’s, and there seems little or no emotional support from the medical team.

Sorry for the rant. My best wishes to all

susie

[kevinParticipant]

Hello Susie,

Have not had these combinations of drugs as a course of treatment but did have high dose melphalan for my SCT’s. All I would say is that I had the same treatment both times which was CDT followed by a SC. Both gave me a full remission for about 4 1/2 years but each time I was affected differently with reference to the side effects. So even the same treatment affected me differently. I am at present relapsing and have been told this time I would have revlamid. It certainly can be a very difficult time both physically and emotionally. I have always been very positive and have always believed the treatments would work. So far this is the case and have no reason to believe this will change.
Best wishes
Kevin

[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

[greg777Participant]

Hi Susie,

So sorry you have had this treatment, it is all too common unfortunately, but please keep persevering, you deserve it.

Also, please mention your anxiety to your consultant. I was referred to a clinical psychologist at the hospital and it really helped me out. I won’t say it made the anxiety go away but it certainly gave me the tools to manage it.

Wishing you the very best,

Greg

[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]

Hello Folks

Had my assessment today and will have my first Velcade tomorrow. I’ll pick up the other drugs at the same time. I’m very, very nervous at the thought of starting all these drugs again. My last lot was RCD and made me feel like death for the first 3 months till my body got used to them. My main worry is the Melphalan but I was told today its only a small dose and they don’t get many reports of major side effects. So I hope that’s correct. My consultant told me at the start of my last treatment “most people sail through this with no problems at all” Needless to say when I felt so bad I thought something was wrong.

Best wishes to all.

susie

[susieParticipant]

Had my first Velcade today and picked up my drugs. I’m quite shocked at the dose of the prednisolone, its 105mgs. Seems very high to me.
Can anyone please tell me if they too have taken this high dose ?

Best wishes to all

susie

[greg777Participant]

Hi Susie,

I had high doses of prednisolone after I had problems with acute GvHD after allogeneic SCT. I can’t remember the doses but it was via IV so I am thinking it was pretty high. I think it is a pretty effective drug but watch out for moods – I had some of the scariest emotions I have had whilst on that drug. I am sure the medical team will be aware of that but please look after yourself.

Wishing you all the very best,

Greg

[susieParticipant]

Thank you Gregg

I must say I’m very anxious at the thought of taking such a high dose. With my induction I had Dex 20mgs and found that perfectly tolerable. This just seems somewhat ridiculous.

Many thanks again and best wishes to you

susie

[greg777Participant]

Hi Susie,

Definitely mention the anxiety to your team, they should be aware of the mood impact of that drug. I had dex too but prednisolone was another beast entirely for me. It got better as I was being tapered off it so I think lower doses are probably better from a mood point of view so definitely talk through any concerns you have with them. I suppose it is a balancing act with giving you the best possible treatment – and I did manage to ride the rough patches out.

Please keep us updated as to how you get on.

Greg

[susieParticipant]

Thanks Greg. Will do. Take care.

[susieParticipant]

Well I’ve taken the first 4 days of melphalan and prednisolone over the weekend. All was quite fine until today. I have no energy, bit breathless when I do anything. If I’m not doing anything I feel ok.

I just wondered if anyone has been on these drugs and how they felt after taking them ?

Best wishes

susie

[finnParticipant]

Hi Susie

105 mg of prednisolone is equivalent to 17 mg of dexamethasone, so hopefully you will not get more side effects from it. Melphalan on the other hand is a classic chemotherapy drug and I would be surprised if you do not get some side effects from it, even if having only a low dose. Hoping it gets easier for you and best of luck with the treatment

[greg777Participant]

Hi Susie,

Definitely best to check with your medical team to see if what you are experiencing is normal. I know long term steroid use can cause muscle wasting but this generally doesn’t happen unless it is used long term. After months of prednisolone use I couldn’t walk up the stairs and from being a relatively fit 36 year old it was quite a big change – but I must have been on high doses and was on it for nearly 6 months. And it did all get better again when I came off the drug. I only had melphalan as part of conditioning for SCT. Made me very sick but it was short lived – I didn’t get any long term effects. But definitely check out with your medical team and see what they think.

wishing you the very best,

Greg

[susieParticipant]

Thanks finn and Gregg.

I’m feeling bit better today, although I still feel very weak and wishy but if this is all I have to put up with, I shall not grumble. I can only assume yesterday was me coming off the pred.

I’m off tomorrow for my second Velcade. Fingers crossed.

Best wishes to all

susie

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