[wendyduffieldParticipant]

Dear Mari

So sorry to hear of this sad and heart breaking news, thinking of you and your family

Love Wendy

[wendyduffieldParticipant]

Hi Helen

I'm so pleased to hear that your light chains have returned to normal range, great news to help mitigate the problems of PN and the dreaded dex. Sooo envious that you got to see the Rolling Stones and glad you have got some nice plans coming up.

Wendy x

[wendyduffieldParticipant]

Hi Jill

mine (Kappa) were somewhere over 10,000 upon diagnosis, I had acute kidney failure which is what led to the diagnosis. I got back into normal range after treatment but have now relapsed and my light chains are around 6000. I would have started treatment sooner but I have been waiting for a trial to open. Everyone is different and some get bone pain or kidney damage at far lower levels or other symptoms of myeloma which I have now like anaemia, fatigue and loss of appetite but my kidney function is being closely monitored and is ok. What are they now? They will look at your mum's blood counts and kidney function and general well being before deciding when to treat. I would advise a chat with Ellen followed by a closer questioning of your mum's consultant on the next visit.

Wendy

[wendyduffieldParticipant]

Hi Dai
Its good to hear your light chains have dropped so substantially and I perfectly understand your tactics. If you can keep the KLC's at a low level with once weekly infusions that keep your disease stable, that is a good thing. Who knows maybe you can get away with once a fortnight infusions or even once a month? I am hearing of people on monthly velcade as a "maintenance" regime. It is also good to feel that you have just a little bit of control over your treatment and your disease but I know its early days!!:-P 😛

[wendyduffieldParticipant]

Hi Terry
You have certainly been through the mill over the last month and I can identify with much of what you say as my relapse recently started to affect my health for the first time with anaemia and slight reduction in function but still no treatment as I am trying to hold on for a trial which I cant start until 12 August. My light chains are up to 6000 now, a big number. However I have received good care and monitoring from my medical team and had my 5th bone marrow biopsy on Friday, ouch! The BMB's are generally carried out by nurses at my hospital and the consensus is that is better because doctors learn how to do it and then don't do them very often or very regularly. I don't have gas and air or a sedative but don't see the harm in asking for one, no need to bear the pain and discomfort if you don't have to.

I feel frustrated that like you that I am now having to deal with the symptoms of myeloma rather than the side effects of chemotherapy which if I had taken it two months ago could have at least been working on my myeloma.

I hope you get started on treatment soon and your platelets recover.

All the best

Wendy

[wendyduffieldParticipant]

Hi Tom

I'm glad you're home and now begins the slow road to recovery but recover you will, just take it easy and look after yourself.

Wendy x

[wendyduffieldParticipant]

Hi Carol
I had a lot of infections on my 1.5 cycles of CDT, including urine and chest infections. Clarithromycin is really yuk, ask them to give you something else next time.

Your myeloma isn't probably active at the moment so they can stop treatment until these infections have cleared up. I had to do fragmin injections and didn't get a blood clot.

Hope you get over it all soon and the blood clot turns out not to be one.

Wendy

[wendyduffieldParticipant]

Hi Jan

My consultant isn't suggesting a BMB at the moment partly because it may be a trial requirement so he doesn't want to me to have two (very kind!) and partly because we know I have relapsed and it wouldn't affect his management of that. I am however having a skeletal xray survey soon not because of any particular bone pain but because I have a small lump on the bone on the side of my shin which needs to be investigated.

I am sorry to hear your KLC's are rising, I know how anxious it makes me feel and my consultant has never really given me a cut off point saying it would depend on my blood counts and kidney function. My damage was kidney related not bone related. But if you got bone damage at 2000 klc you don't want to go much higher than 1000. I do think I would have started treatment by now if the trial had been ready.

I definitely agree that sunshine seems to help with blood counts etc and we are all getting plenty of it at the moment so try and make the most of your time before treatment starts.

Wendy x

[wendyduffieldParticipant]

That is good news indeed, what a relief, celebrate with that cruise

Wendy

[wendyduffieldParticipant]

Hi Susan
If you are having monthly zometa you will be given a calcium supplement to take because the Zometa takes the calcium from your body and binds it to the bones to make them stronger so you in theory need extra calcium although in general excess calcium is not a good thing but its ok if you are having zometa. Your calcium levels will be monitored if you are having zometa anyway. I was ill on treatment too but once you have had the stem cell transplant you wouldn't be on any treatment other than maintenance possibly so it is worth considering. My advice is don't read too much on the internet as it can be depressing or at least limit it to say half and hour a day and be guided by your consultant about what happens next.

Best wishes

Wendy

[wendyduffieldParticipant]

Good luck with it all Tom, it is all a bit of a non event the first week from what I remember. I'll be thinking of you

Wendy

[wendyduffieldParticipant]

Thanks Angie for your message of support, I am glad you have got over the shock and distress of what happened to your mum and are learning to live with her absence. As Eve says life is for living

Wendy x

[wendyduffieldParticipant]

Hi Helen

they wont do another skeletal survey unless I am complaining of any bone pain which luckily I am not. I again checked with my consultant now that my light chains are over 1000 that I am ok to carry on with my heavy duty exercise such as running, tennis and flipping tractor tyres over (seriously!) and he said it was fine to carry on and "exercise is good" so I intend to continue training for the triathlon in August although I feel like I am living on a knife edge about when I start treatment and what if any damage is being caused to my kidneys or bones in the interim.

I suspect your light chains before you were diagnosed were over 10,000 (as they think mine were) to cause the level of damage you had. I read your profile, you are so young to have myeloma and I hope you enjoy a long remission, get on with your life again and have a lovely summer holiday to Italy (one of my favourite places!)

Wendy x

[wendyduffieldParticipant]

Hi Tom

what a complete and utter idiot (I want to say something else but its not allowed!) Don't let it play on your mind, you've done fine. Enjoy the break from treatment between now and your transplant, have some fun, get away etc

Love Wendy

[wendyduffieldParticipant]

Hi Terry

How very rude of your doctor. ! I am sorry to hear your SCT failed after 9 months, that is disappointing news. I doubt you will be offered another auto transplant if the first one lasted less than 12 months as it will be considered to be a failure, maybe a donor transplant but I don't know your age?

I hope you have a more productive meeting at St Barts (why two hospitals) and keep us posted.

Regards

Wendy

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