[CharlotteParticipant]

Hello.

Well, here I am again after all. I posted a couple of years ago that I had had a plasmacytoma but seemed to be doing well, and I was really hoping I would make it to 5 years, and that it would not progress to MM. I made it to just over 4 years clear; then it did.

My consultant said she had had “the best results” with young patients with patchy, early stage disease, and reckoned with luck and the treatment she had planned (VTD + SCT) I might get “ten to fifteen years’ remission”. It had reappeared in three (different) vertebrae, possibly a fourth but they weren’t sure. Paraproteins at 4g, so very low – though I think they should have caught it four months earlier when they suddenly reappeared, in May, albeit only at 2. But anyway.

I completed 4 cycles of VTD on Monday, then had my clinic appt where I saw (for the second time) a new registrar who clearly hadn’t read any of my notes beyond the summary of the last clinic meeting. She told me the radiologists’ report on the MRI 2 weeks earlier wasn’t in yet, and they were putting me on a fifth cycle of VTD “to consolidate things”. I said surely it made no sense to put me on another 3 weeks of poisons without looking at the scan to see what the hell was going on in there. But in the end I agreed. Went in for the Velcade injection today. I’ve been tolerating it remarkably well – suspiciously well, I thought; I’d even asked whether hardy any side-effects (apart from horrible pustules under my eyelids) might mean it wasn’t working…

But I’d found out from the imaging dept that the report was in fact filed several days ago, on Jan 21st. So I collared one of the haematologists and asked him to look at it. It says the lesions in C7, T6 and L3 are “stable”. i.e.: no change. And there is a “new” lesion at T12 – which was the area they weren’t sure about in October, so I don’t know whether that has actually new, has grown, or what. Either way, the damn things haven’t got smaller. The doctor tried to put a positive spin on it by saying that the chemo had worked, as they hadn’t got worse (er, apart from the T12…). But as I understood that VTD worked for something like 90% of cases (I may have got that statistic wrong, but it was most of them), this was NOT what I was expecting to hear. So now it seems I’m doing a fifth cycle of something that doesn’t work, and I don’t understand why. No one seems that bothered. I wasn’t even down to be discussed at this week’s MDT, and I’m not due to see my consultant at all – she’s away when I finish this cycle…

If VTD doesn’t get rid of it, what the hell are they going to do? The plan was to get me into remission and then do a stem cell transplant, which I had more or less come to terms with after initially being utterly terrified. Now of course they can’t do that. They have to get rid of it first. Can they? Will they just randomly give me some other drug and cross their fingers? What if none of them work? I am feeling rather bleak right now.

Charlotte

[CarolsymonsParticipant]

Hi Charlotte
I can understand your frustration. My numbers were also low on diagnosis and I had a good result after 4 cycles of CDT. However the consultant insisted that I complete 6 cycles as that was the protocol. It is annoying that they just follow protocol when your body is being pumped full of poison. However I complied….well mostly as I did skip the last few weeks of cyclophosphamide as I was feeling so wretched. I think you just have to keep pushing for answers which I know is darn difficult when you keep seeing different registrars. There are lots of drugs available and really drugs are all the doctors can offer. However I have luckily had 12 months of remission after SCT so I feel positive about the future.

Carol

[MrsLParticipant]

Hi Charlotte,

I have compression fractures at L2 and L4 as well as multiple lytic lesions in several other places, no-one has suggested treatment would ‘mend’ these. The measure they used to check treatment was working before my SCT was the paraprotein level. It came down from 66 to 2, classed as a very good partial response, after 6 cycles of RCD before my SCT. Unfortunately the SCT only gave me a few months remission and when paraprotein was back up to 8 I started VCD, they say for 6 to 8 cycles, again they are monitoring paraprotein levels, which have started to fall slightly after the second cycle, so fingers crossed.

Linda

[CharlotteParticipant]

Hi Linda,

Thanks for your reply. I spoke to the Macmillan nurse yesterday, who told me much the same thing, i.e. that they wouldn’t really expect the lesions to get smaller at this stage, and that they go by the paraprotein level, which was apparently “zoning” when they last checked it. I think this means it’s present but too low to quantify. But since it was very low to begin with, despite there being 4 lesions, I worry that it’s not a great indicator of how much cancer there actually is… Anyway, you’ve confirmed what she said, i.e. that they would do the SCT if the paraproteins are right down even if the lesions don’t get smaller, and that they would expect the lesions to remain in some (presumably non-cancerous??) form anyway. I was assuming it would be like with radiotherapy, which I had last time, which got rid of the cancerous cells and healthy bone/marrow grew back in their place – insofar as they were able to, as that vertebra had collapsed.

I’ll hopefully be seeing the consultant tomorrow so will be able to ask her about it then.

Charlotte

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