Hi Peter

Being a person with myeloma rather than a myeloma patient is a good way of putting it. I think that’s how I tend to feel. Actually, I tend to forget I’ve got myeloma a lot of the time, though not for long periods inevitably if you’re still taking medication for it.

I’m sorry to hear the Velcade treatment is not having a dramatic effect,…[Read more]

Hi Peter

Being a person with myeloma rather than a myeloma patient is a good way of putting it. I think that’s how I tend to feel. Actually, I tend to forget I’ve got myeloma a lot of the time, though not for long periods inevitably if you’re still taking medication for it.

I’m sorry to hear the Velcade treatment is not having a dramatic effect,…[Read more]

Hi Peter

Being a person with myeloma rather than a myeloma patient is a good way of putting it. I think that’s how I tend to feel. Actually, I tend to forget I’ve got myeloma a lot of the time, though not for long periods inevitably if you’re taking medication for it.

I’m sorry to hear the Velcade treatment is not having a dramatic effect, but…[Read more]

Hi Kath

I haven’t got MGUS, but the Myeloma UK infosheet about it, which can be downloaded here

http://www.myeloma.org.uk/information/myeloma-uk-publications-list/other-related-conditions/mgus-infosheet/

says, in the “How is MGUS managed?” section: “Paraprotein levels can rise and fall in MGUS – this is normal. However, any steady increase in…[Read more]

Hello Mandy

Thank you for the update. It’s brilliant that you’re in complete remission, you must be delighted. I hope you manage to conquer the occasional down days. I guess we all have moments when we’re a bit apprehensive about what the future might hold.

I’m at day 160. Sadly my paraprotein level was higher after the transplant than it was…[Read more]

Hello Mandy

Thank you for the update. It’s brilliant that you’re in complete remission, you must be delighted. I hope you manage to conquer the occasional down days. I guess we all have moments when we’re a bit apprehensive about what the future might hold.

I’m at day 160. Sadly my paraprotein level was higher after the transplant than it was…[Read more]

Hi Jenny

You might struggle to find someone else with PCL here, it is much rarer than myeloma, and myeloma is a rare cancer. I think you’re the first person to mention it in these forums. Myeloma UK have published an Infosheet about…[Read more]

Hi Amanda

I suspect the labs use different units (i.e. Canterbury results in mg/L and Kings results in mg/dL). 180 mg/dL is equivalent to 1800 mg/L.

Hi Peter and Andrea

> Peter
I said specialist care nurse in another thread. I’ve just checked and I should have said clinical nurse specialist. FLCs weren’t mentioned during my reviews except when I asked and then the response seemed a bit reluctant and brief. They seemed to concentrate on pp as a measure of progress. I’m sure you will have been…[Read more]

Hi Peter and Andrea

> Peter
I said specialist care nurse in another thread. I’ve just checked and I should have said clinical nurse specialist. FLCs weren’t mentioned during my reviews except when I asked and then the response seemed a bit reluctant and brief. They seemed to concentrate on pp as a measure of progress. I’m sure you will have been…[Read more]

Hi Peter and Andrea

> Peter
I said specialist care nurse in another thread. I’ve just checked and I should have said clinical nurse specialist. FLCs weren’t mentioned during my reviews except when I asked and then the response seemed a bit reluctant and brief. They seemed to concentrate on pp as a measure of progress. I’m sure you will have been…[Read more]

Hi Peter

The attenuated version has half the dose of Dex, i.e. 20mg instead of 40mg. I assume I was on it because of my age, I was 68 at the time. Published information about CTDa usually says it’s given to older and/or less fit patients who are not eligible for a transplant, but I went on to have one. It’s mentioned in Myeloma UK’s CTD Infoguide…[Read more]

My first day unit (i.e. outpatient) appointment was 3 days after discharge, then they were weekly for 3 weeks, then mostly fortnightly till day 100. So the procedure obviously varies quite a lot from one unit to another.

My PICC line was removed at the 2nd appointment after checking my blood results. The appointments consisted of having bloods…[Read more]

Hi Peter

I developed quite pronounced acid reflux symptoms during my first cycle of CTDa (attenuated CTD). My voice was weak and hoarse and my larynx was sore, often accompanied by a sort of acid taste in the back of my throat. Symptoms can vary from person to person, I also had frequent heartburn and a persistent cough.

My initial CTDa meds…[Read more]

Hi Peter

My guess is that “more chemo” will be one of the various Velcade combinations. That’s what I was switched to (in my case Velcade + Dex) when my response to CTDa seemed to have plateaued after 4 cycles. Either CTD or Velcade seems to be the choice for initial (induction) treatment in the UK for anyone not on a trial who might be eligible…[Read more]

I wouldn’t worry about a blood test result that is slightly outside what is considered to be the ‘normal’ range. The normal range for a particular result can vary from one lab to another. My guess is that the test result you’re referring to is MCV (mean cell volume). The test results from my local hospital, for example, say the normal range for…[Read more]

Hi Henrietta

I think the Myeloma UK Infosheet about MGUS will put your mind at rest:

http://www.myeloma.org.uk/information/myeloma-uk-publications-list/other-related-conditions/mgus-infosheet/

I know of MGUS but I can’t add anything to what’s in the Infosheet. In fact I’m surprised that a paraprotein level of 30 g/L does not necessarily…[Read more]

Hi Sue

Injecting subcutaneously means injecting just below the skin, injecting intravenously means injecting into a vein. You may have been given Clexane when you were having CTD treatment, Clexane is administered subcutaneously (you can inject Clexane yourself but not Velcade).

I didn’t mean to alarm you. Peripheral neuropathy is a common side…[Read more]

Hi Anthony

Injecting subcutaneously has apparently reduced the side effects of Velcade compared with IV injections. The only immediate effects I got were regular injection site reactions and mild constipation – by mild I mean it only lasted a couple of days or so. I was injected on Thursdays and I was regularly constipated from part way through…[Read more]

Hi Mandy

Thank you for your kind comments.

The schedule I was sent for my admission said I would be admitted to one of three wards (4A, 5A or Bodley Scott 1) dependent on bed availability on the day. I was admitted to Bodley Scott 1. That’s the ward that was due to move. I don’t know anything about the other two, I haven’t seen them.

Time seems…[Read more]