[JetParticipant]

Hi Roger

I do think it is much harder for those around us who care about us than it is for the patient her/himself. I hope you know that you can also access support from the specialist nurses, MacMillan and Myeloma UK as her son.

Please do try not to worry – no use you being sick too!

Could you maybe go with her to the consultation? I've found mine not too worrying, but I can't say how my friend found them – she accompanied me each time. She's quite a worrier too. We both found them a good source of information and an opportunity to ask questions, which if left unanswered could mean more worrying. DO ASK ANYTHING!

Best wishes for you and your mum.

Jet x

[JetParticipant]

Hi Carol

I am also on the Myeloma XI trial. I had RCD for the initial treatment and am currently in hospital, having had the high dose Melphalan on Weds and my own stem cells transplanted yesterday. And yes, they gave me ice to suck for 10 minutes prior, during and 10 minutes after. so far, no mouth pain, just a bit dry and weird tasting, but not nearly as bad as what I went through taking Revlimid – that totally ruined any food enjoyment.

So, I asked about it for the next phase of randomisation, which comes at 3 months post-transplant, where you either get no maintenance medication or Revlimid. I imagine that getting Revlimid may well be the best way to treat the disease, but if it means 10 years of miserable encounters with food, I'm not sure I want it.

My consultant was very understanding and said we can see what happens. I might not go the Revlimid route, I might not get such a bad reaction to it and if I do, they can reduce the dose, or if necessary take me off the trial.

It's good to hear from people a bit ahead of me and to support those coming along behind with bits of experiential wisdom.

Best wishes to you on your journey.
Jet x

[JetParticipant]

Hi again Amelie

I just re-read my earlier post to you and realised that I came across quite harsh. So I just wanted to apologise if my comments upset you. I just wanted to be sure you would get sound, reliable medical answers. But I do realise that sometimes we just need to rant and be heard and acknowledged.

I hope you're getting the answers you and John need, from whichever source.

Best wishes
Jet x

[JetParticipant]

Hi Helen

Sorry for not responding sooner. I didn't just sit at home – I went for a picnic on Monday, cycling on Tuesday and a walk in the sun on Weds morning.

But yes, I waited and called at various times and finally went in on Wednesday at 2pm. They started the chemotherapy that afternoon, so it was only delayed by one and half days, but it meant I was woken every two hours during the first night, to change the IV bags. Normally, this would happen during the day, as the chemo would normally be given in the morning.

But apart from that, all is going well. Only a slightly dry mouth and peeing very frequently as they've given me a diuretic to ensure I don't retain fluid. On that subject, I think I need to go to the loo now! 😀

I'll hopefully be out or almost out by the time you go in. Please let us know how you're doing.
Good luck and best wishes

Jet x

[JetParticipant]

Ahhhh… thanks Dai! Me too! 🙂

[JetParticipant]

Hi Helen

As Dai says, I'm just ahead of you and I have to say I was only slightly wiped out for a few days. Compared to being on Revlimid and the month I was ill with hypercalcaemia prior to diagnosis, it was a breeze.

Glad to hear you're much improved. I found the last few weeks (post-collection and pre-transplant) great – loads of energy, appetite for food and life – even went camping for a week in Wales… with a 'bonnet' for my bald head at night. LOL!

Today is supposed to be the day I receive the high-dose chemotherapy and SCT tomorrow, but there have been problems with getting a bed, so we'll see what happens. I think I'm now so over the fear and anxiety, from dealing with the frustration of so many delays that I'll be going in fighting. 🙂

If it's helpful for you, please take a look at my blog about living with myeloma: jetblackliving.wordpress.com.

Good luck with the next stage of your journey.
Jet x

[JetParticipant]

Please Amelie – don't ask these sorts of medical questions here – please speak to the consultant or a haematology nurse. I don't know where you are, but in Nottingham, we are given a phone no. bleep and pager to contact a specialist nurse or the Day Case nurses at any time. Use them – that's what they're there for.

On re-reading your post, I expect that the consultant wasn't too worried, or he would have suggested treatment, but if it's left you worried, please get your questions answered by the people who can give you reliable answers.

Best wishes
Jet

[JetParticipant]

Wow! Just checked in and am very touched by the above comments. Thank you all!

I was supposed to go in on Monday afternoon, after a morning line flush and consultation with the lovely Dr Jenny Byrne, but there was no bed available. That was fine with me – I felt like I'd had a stay of execution and went out into Derbyshire with a picnic to celebrate.

I was then meant to go in yesterday morning, when you were in Day Case, Dai, but still no bed. Various phones calls led to them telling me to come at 5pm. At 4pm, I called to ask if I could come later and they then said, yes, come in at 8pm. They called me later and said sorry, but could I come in this morning at 8:30. So I went to see a movie instead – much better way to spend the evening, I reckon.

I checked this morning before leaving the house and they've now said to come in at 2pm and they will start the treatment today.

I'll believe it when I see it! 😀

[JetParticipant]

Eliz Ellen – that's a great idea! Thanks for posting. x

[JetParticipant]

I felt exactly the same about the numerous tablets. I counted them up and on the first day of the cycle, the maximum was 45, but I've seen other people post on here with more. 🙂

If it's helpful, I'm writing a blog about my experience, living with myeloma: jetblackliving.wordpress.com. There is one early post entitled 45! which even includes a photo of all my tablets for that day laid out. It's funny, but you do get used to it. For me, it was the side effects more than the tablet taking that was a pain.

[JetParticipant]

Hi Ivan

Crying is a very good thing. It relieves the body of stress. I cry most days. But I also do other things too.

Everyone with myeloma seems to have it differently, there are different types of the disease, different add-on problems and different medications, so it's rare to find someone who has it the same as you do, but from my own experience, once the initial treatment (usually 4-6 months) was over, the remission period is almost like being "normal" – whatever that is for each of us.

Anyway, good luck and let the tears flow – they're part of the healing process too – for all of you.

Best wishes
Jet

[JetParticipant]

Thanks CN! Superbly succinct response. 🙂

[JetParticipant]

Hi Debs

Where are you at with the STC? Are you undergoing it right now? I do hope it's going well for you.
My thoughts are with you.

Jet x

[JetParticipant]

Hi Phil

Thanks for responding. It's so good to hear a number of experiences. Yours sounds more like the one my specialist nurse mentioned, which I think may be more common than Min's partner, Peter. Ho hum…

I'm also on the Myeloma XI trial and to be honest, I'm more worried about being randomised to take Revlimid after the SCT than the SCT itself. I didn't get on well with it in the initial phase of treatment – loss of taste and therefore appetite as well as it making me very tired and low. But they've said if I do get it, and I do have the same side effects, they can reduce the dose or if all else fails, I can stop using it and come off the trial. I reckon a long life where you feel lousy because you can't enjoy food may not be better than a shorter one feeling better, but we'll see.

Good luck and best wishes for the future
Jet x

[JetParticipant]

Thanks Mavis

I really appreciate your compliments. And don't worry about the blog, it'll probably be my main activity while I'm so tired, unless I feel too awful to write.

Jet x

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