[CarolsymonsParticipant]

Nobody could have led a more healthy lifestyle than me. I have sisters who drink and smoke and they don't have cancer however……….blaming yourself will not help. We are all exposed to chemicals daily- in food, the environment etc etc so we cannot avoid them while we live in this modern world. When I was diagnosed in hospital and asked the consultant the "Why me?" question he responded with "Sh## happens!" He knew I was Australian and obviously had watched the old Crocodile Dundee movies! However rather than search for reasons to blame yourself it is much better to concentrate on beating the cancer down and getting on with living life!

However I do wonder if living and working for 18 months in a seriously polluted city in central China (Wuhan) some years ago may have been the toxic environment trigger that started my myeloma. Even so nothing I can do now can change that.

Carol

[CarolsymonsParticipant]

If you are taking thalidomide then that drug can also cause neuropathy.

Carol

[CarolsymonsParticipant]

Thanks Tom. I am surprised nobody else has replied to my question. Did the chemo before stem cell extraction make you ill?

Carol

[CarolsymonsParticipant]

Luciano don't stress- there are people on this site who have been smouldering for years and years. Re insurance other people with myeloma have recommended the following companies which I have recorded for when I can travel again: World Wide Travel, All Clear, World First, Now I Can Travel, AXA, Staysure and Marks and Spencer. I haven't used them so can't recommend one more than the others.

Carol

[CarolsymonsParticipant]

You asked about extra tests. As well as the blood test and bone marrow biopsy, I also had a skeletal survey to check for other bone damage and a CT scan when I was diagnosed.

Carol

[CarolsymonsParticipant]

Hi Jasper

I am in London, diagnosed April this year at Ealing Hospital west London, after the myeloma gremlins ate my collar bone! 4 weeks ago I completed 6 cycles (18 weeks) of initial drug therapy which seems to be standard here in the UK and comprised CTD (cyclophosphamide, dexamethasone and thalidomide). I have had an excellent response and am now moving towards SCT (stem cell transplant). For this I have been referred to Hammersmith Hospital.

There are others on this forum who have been part of a clinical trial at University Hospital central London, which has given them access to myeloma specialists and to Velcade, a drug that is available as up front treatment in the US and Australia, but not in the UK, unless you sign up to a clinical trial. But…..CTD worked for me and I am saving Velcade for when I relapse. Also some people have developed neuropathy from Velcade, which unfortunately can also be a side effect of thalidomide.

Actually, the side effects from the 3 drugs in the CTD regime are vey unpleasant, but you have to do whatever it takes to beat the cancer down.

Carol

[CarolsymonsParticipant]

Hi Scott

I don't like to worry you but…..cycle 5 and 6 of CDT were the worst for me…I was really ill. I am so pleased to be finished with the drugs for now. App't next week at Hammersmith to discuss SCT……..and more drugs!

Carol

[CarolsymonsParticipant]

Christina, normal kappa lambda ratio is between 0.26 to 1.65.

Carol

[CarolsymonsParticipant]

I was given a tapered course of dex to take after the 4 days on high dose, as my pulse rate on withdrawal dropped too low. i took 10 dex then 5 then 2 on the days following the high dose, which helped with the withdrawal symptoms.

Carol

[CarolsymonsParticipant]

Thanks Eve..I have asked for a phased return to work while I wait for SCT (still no app't at Hammersmith Hospital) as I am now on half pay…so no holiday if the consultant approves the return. But…I must say I am checking out all the fantastic last minute cruise deals. After all how important is money in the grand scheme of life?

Carol

[CarolsymonsParticipant]

Woops -ratio of 0.20 is normal not 0.02
Carol

[CarolsymonsParticipant]

Fabulous news David!

Carol

[CarolsymonsParticipant]

I am in cycle 6 CDT and I have this! I hear my heart beat as a whooshing external throbbing, which drives me mad! Luckily (or maybe not) I have some hearing loss and tinnitus in one ear so lie on the good ear to try to block the noise and get some sleep. I reckon it's the darn drugs but haven't asked any doctors…….doubt if they would be interested.

Carol

[CarolsymonsParticipant]

What fabulous news Dai…it will definitely be onwards and upwards from here on.

I have just collected a blood test printout showing my pesky lambda light chains rising too (from 128 to 151) and am in cycle 6 of CDT, so fear that instead of marching on to SCT as I had hoped at the end of cycle 6, I may be given more cycles of CDT….so disappointed! I HATE these drugs!

Carol

[CarolsymonsParticipant]

Don't stress he could be smouldering for years with a little bit of luck!

Carol

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