[wendyannParticipant]

Recently diagnosed with light chain myeloma.Fortunately my GP ordered blood tests on very vague symptoms-some sweating at night and skin itching which I have since been told that they were nothing to do with myeloma.My blood test came back with protein level of 2,I was referred to hamematologist and had bone marrow biopsy with level of 22-25.
I have today started first course of CTD and am wondering what to expect.Last light chain level of 7000 . Skeletal survey fine -no bone pain. I have felt really well prior to diagnosis-would not have guessed anything was wrong before blood test.
Whilst I realise everyone is different would appreciate feed back from light-chain patients.

[PerkymiteParticipant]

Hi Wendy, not a light chain suffer I am afraid but I thought I would welcome you to the site.

I started here in Jul 2009 with a sell by date of Jul 2011. Recently I started on 3rd line treatment and for the first time in 5 years I have just gone into “excellent remission”, my consultants words not mine. The point is you will go through some ups and downs no doubt, as we all do, but just keep going and you will be ok.

Kindest regards – vasbyte

David

[wendyannParticipant]

Hi David,
Thanks for the welcome. So pleased you are doing well.I feel quite encouraged after reading your experience.
Kind regards’
Wendy

[stanley-1960Participant]

Hi Wendy,

I started CTD April last course to finish monday flc kappa 4160 down to 119 after course 3 M spike 19.9 down to 0.8. Unlike you i have a plasmacytoma on my rib and lytic lesions elsewhere but treatment for me has been good. I feel better than before starting. Side effects for me have been rash through taking antibotics on myeloma XI trial and bowel issues from the Thalidomide ( taking docusate and movicol) for regularity. I have my bloods Thursday for consultancy next Monday and am hoping for further reduction in both readings before SCT mid July. The only other problem i personally have had is with the dex sending my sugar reading off the scale as i am a diabetic (tablets only) but refused insulin for the short period of time while on treatment. Good luck with your courses and i hope it goes well for you.

Best regards,

Stanley

nley

[wallaceParticipant]

I’m 49 with light chain over 7 years, SCT 2007 and still in remission. I hope you have been diagnosed early, where are you being treated?

Mike

[tonyfParticipant]

Evening Wendy, I was 67 when I was diagnosed with light chain myeloma, returned from a holiday in the Far East with a chest infection which my doc diagnosed as pneumonia. That was cleared and had several more infections, loads blood tests and three months later was diagnosed with myeloma. No bone pain, kidney function ok. Was/ am on the myeloma XI drug trial. Had a stem cell transplant and am now not on any drugs. As I am on the drugs trial still I attend clinic every three months. I am just coming up to my 70th birthday and although my pp levels did not disappear completely I feel great, get away on holidays, including long haul! Do admit to feeling tired occasionally and can fall asleep at the drop of a hat, but hey that’s perhaps age!
Whatever the future brings for you, and whatever treatment is given it is all doable.
I’m sure that you were advised not to get onto the internet, I would stay with this site, any questions, worries and anxieties can be answered from here.
Best of luck for the future.
Regards
Tony F

[wallaceParticipant]

Tony, I envy you; “can fall asleep at the drop of a hat”.  🙂

[wendyannParticipant]

I am pleased I have started using the forum.It is good to have feedback.Thanks everyone!
I have been diagnosed early -did not have any symptoms to speak of and have felt really well.If not for my astute GP I would still be merrily continuing with life having no idea what was happening until
symptoms appeared at a later stage. As I have only just begun CTD I expect to feel rough in parts-up to 6 cycles and see what happens then’
I am being treated at the Royal Shrewsbury Hospital O’Connor Haematology unit- approx. 22 miles from here with SCT’s carried out at the Queen Elizabeth,Birmimgham. As far as I can tell from research we seem to be on the right track at the moment-early days yet! I am willing to be part of drug trials and will mention this again when I see my Consultant in a couple of weeks.
Hope to get new readings then-though I expect them to be up rather than down until treatment has some effect.
Thanks again every one-appreciate it!
Wendy

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