[fozzParticipant]

Six weeks ago I saw my GI consultant and she said she wanted a blood test repeating. I asked what it was, she said I have a raised IgA paraprotein and she wanted to see if it was still raised. Naturally I googled it. When those blood results came back the IgA was still raised at 12g/L and she requested a haematology referral. I asked for a print out of all the blood results as I wanted to do my homework and the results I got back were pretty sparce, very little information. I saw Prof Cook at Leeds today and he took bloods as he didn’t have enough info to go on so I now have to wait for those results to come back before moving forward. It’s so hard all the waiting around. I just want answers. I’m feeling down and frustrated.

Kath. x

[HarmonyParticipant]

I know how you feel..Waiting is agonising but eventually you get used to waiting for results because you have to. I find that it helps to keep busy and fill your days up with activity- no matter how mundane. Bake bread, spring clean, go shopping .. This way, you have less time to think during the day and you’re pretty tired by the time that night falls. You wake up in the morning and it hits you in the face again but you get out of bed and start again.

[graham-cParticipant]

Welcome abroad fozz. I’m afraid that specifics aren’t how it works with myeloma and associated conditions. It’s best to think that you’re at the start of a journey and the medics will detect any obstacles that may come your way and see whether or not your reading is having any effect on any other part of your body.

Above everything else it seems that an accelerated increase in PP’s is likely to prompt treatment. My reading is half of yours and steady,and I receive no treatment which is find by me as I suspect treatment would make me feel ill. My FLC’s (free light chains) are more significant but again they are steady.

I ‘m on the watch and wait list and basic functions are monitored through blood tests. Aside from that any other health problems must always be considered in relation to this. I have seriously ‘crocked’ my back which is a ‘red flag’ even if unrelated.

What I’m saying is that unless you are currently at significant risk you probably won’t get a definitive answer. You’re at a greater risk of getting one of these illnesses but you’ll be monitored whereas many people are at risk and they never know it.

• This reply was modified 9 years, 5 months ago by  graham-c.

[HarmonyParticipant]

Well, with my pp level at 23, I top both of you and am not receiving treatment!! Not that we’re competing… (Excuse me for being facetious but laughing has to be better than crying, right?

[MrsLParticipant]

After a couple of months in remission I have just relapsed and my pp level is now just 8 but it looks like they will start treatment very soon, I find out next week. It isn’t just the pp level but if it is increasing and if it is causing other problems that seem to trigger treatment.
If you are seeing Prof Cook at Leeds you are seeing one of the best.

[tonyfParticipant]

Evening Chrissie, so your pp’s are at 23 and you are not on any treatment. Can I ask, have you been on treatment, if so have you had a SCT?
I was diagnosed 3 years ago, put on myeloma XI trial, had a SCT, pps were down to 2. That was almost 2 years ago. No treatment since the SCT. Pps now at 4.9. Specialist doesn’t appear concerned, still no treatment, just watch and wait, come back in 3 months!
Linda seems to think that with her pps at 8 she may start treatment soon.
Very odd, don’t know what to think!

[HarmonyParticipant]

Hi Tony,

I haven’t had treatment since being diagnosed as smouldering a year ago. The skeletal x-ray didn’t show lytic lesions and I haven’t experienced any complications so I think this is why they haven’t gone down that route instead. My pp level was 20 when I was first diagnosed but my consultant indicated that the rise in the level indicates stable disease. It’s all a minefield though..

[Author]

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