[HarmonyParticipant]

Glad you’re coping so well with the treatment-I know what you mean about waiting and the car park costs are pretty astronomical to boot! Keep moving, one step at a time-carry on! My thoughts are with you.x

[HarmonyParticipant]

Hi Mike,
Hope the results are positive- I know how torturous the waiting is! One step at a time.x

[HarmonyParticipant]

Hi Helen and Yvonne, I share your fear and sleeplessness. My appt is on Monday so I’m currently tortured by nightmares. The days aren’t too bad but I’m a basket of rattling anxiety at night. I’m trying to convince myself that worrying won’t change anything and is wasted anxiety but I have a head/ heart battle going on. Fingers crossed for all of us – life is bloody cruel. Do we have to spend the rest of our days under a cloud?? Everyone wants to turn us into the cliché of the positive, brave, courageous fighter but at the end of the day, I Just want to be human – not transformed into the cancer personality!! Sorry, I’m having a blue moment today.

[HarmonyParticipant]

Wishing you strength and courage for the next phase Mike. The confusing thing is that the stats suggest that there’s only a 10% chance of progression in the first 10 years but I haven’t heard of anyone who doesn’t progress at some point, You have the advantage of being medical and therefore able to understand all of the terms and as they say, knowledge is power.
Take care.x

[HarmonyParticipant]

Hi Lynda,
I know exactly how you feel. I was diagnosed with asymptomatic myeloma at the age of 40 in October 2013. My children were aged 7 and 10. The fear that you feel will eventually turn into calmish acceptance as you gather more information and see that this is a treatable disease – so there’s lots of hope. I know that the word ‘incurable’ is scary but, as my counsellor said, incurable means chronic rather than terminal. There’s lots of scary, outdated stuff on the internet so be selective about what you read. This website and the Mayo clinic in the U.S are good sources of information. I now manage to go for 2 whole hours without thinking about it. Take carex

[HarmonyParticipant]

Hi Mike,

Just watched some of this- it’s exciting that there are these new drug combinations and that research is being done on when to intervene but the cynic in me wonders if our cash-strapped NHS would be likely to allow us to have access to these drugs and treatments anyway. After all, myeloma is a rare form of cancer that affects so few of us in comparison to prostate and breast. Myeloma is just not sexy enough to attract attention. If I won the lottery, I’d use the Mayo Clinic in America- and they say money can’t buy you happiness!

For some of us, clinical trials could be our only hope- excuse my ignorance but I have to ask, how do clinical trials work? Are the drugs totally new or have they been used in countries like America before? Are people on clinical trials literally the guinea pigs used so that side effects can be ascertained?

Thank you for the link- it certainly provides food for thought.

Chrissie

[HarmonyParticipant]

Thanks Ted – I didn’t realise that it can actually go down too. Do you take any supplements or follow a special diet plan? Judging by my pp level, I seem to be further along the smouldering journey than you.

[HarmonyParticipant]

Hi Cygnet,

Excuse my ignorance but I had to google ‘conscious sedation’! No, I didn’t have it; I had a combination of local anaesthetic and Bob Marley singing ‘three little birds’ on the Ipod. I returned to work the next day.

Sorry to hear about your mum – I hope that she is at peace and as pain-free as possible. Sometimes life sets us enormous challenges but dark nights are always eventually followed by bright days.

God Bless you.

[HarmonyParticipant]

Hi,
I remember being in your situation last year and I hope I can reassure you by saying that the anxiety that you are experiencing now is far worse than the reality. I would recommend taking someone to the appt with you as it’s hard to take everything in. My consultant was very positive and talked about how treatable myeloma is nowadays. She then told me my paraprotein level, which was 20.

I was given the option of an immediate skeletal x-ray and this pleased me because it felt good to get this out of the way. I was then booked in for the bone marrow biopsy 5 days later. This procedure was okay-I recommend bringing your ipod with your favourite music so that you can zone out- I sang like a loony!! I was conscious- conscious sedation is fine. I didn’t feel any pain – just a tugging sensation during the procedure and a dull ache afterwards. I found it all a bit emotional -but not really painful.

I wish you well -just keep getting up and carrying on!
Chrissie.x

[HarmonyParticipant]

Hi Rosie,

I’m so sorry for your loss. The picture is beautiful – he looks so well in it. Hope you and the children can keep strong and keep memories of special times alive. He lives on in your hearts and your memories. God bless you all.x

[HarmonyParticipant]

Well done Helen. I think that this also illustrates that we can’t blindly assume that Doctors are completely up to date with everything -nowadays, we can be better or equally informed.

[HarmonyParticipant]

I am so sorry Graham- sounds like a bloody nightmare which is the last thing that you need when you are in pain and therefore vulnerable. I’m afraid that it just shows that we can’t have blind faith in the medics but always have to question, query and even make suggestions- which is so wrong but necessary. Is it possible for someone to attend appointments with you so that you have a second pair of ears? I’m not medical but is sounds to me like you need to have a MRI done.You could phone the myeloma UK info line- they are very helpful- and ask for advice.

[HarmonyParticipant]

I think that you thoroughly deserve the TV John! Glad to hear that the Velcade is working.x

[HarmonyParticipant]

Hello Noel,

I wish you well – fingers crossed for a positive outcome.

[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]

Posts