[eveParticipant]

Hi VIcki
We were told if have little side effects on first cycle the rest are usualy the same but everyone is different.
You do not say what type of Myeloma your dad has,they take bloods and get 2 cycle within days,Once your dad starts on bone infusions the pain will easy but in the mean time make sure you tell the clinic it is very important for them to know any side effects.because sometimes it,s not bone pain,could be infection,steroids hide infection,I can only describe it as going down hill slowly,you know someyhings not right and you tend to think it is the chemo.

We learn,t the hard way,never again will we just think it,s chemo,check anything out your not happy with. Dex does give you a boost,its after the 4 days,mood swings,lack of energy.its agood idea just to keep a note of thing,eg,bp,temp,weight,general how your dads feeling,if things start to go down hill,you will see the changers on the chart,[just an idea]I do it once a week unless Slim says he is feeling ill.

Do not expect quick results,Slims on 5th cycle of CTD with break for 5 weeks with septic pneumonia [not nice ] will do 6 cycle before he sees consultant.Saying all that he is 500% better and it,s lovely to see.

Post if you are worried about anything if you feel you cannot bother the hospital,the hospital will tell you to ring.they do understand it is hard to make that call,but they would prefer you to call if you are worried.
keep in touch Eve

[willywinkiParticipant]

Thanks Eve

I'm hope that's the case for dad, although he's been feeling poorly with this first cycle, but it's not been nearly as bad as i expected when i thought about him having chemo. He said something similar himself, which is reassuring, cos i think he was very scared about starting the CDT. He's just super tired at the moment, and back to spending much of his time in bed again 🙁

I will tell mum to mention the pain in his ribs as his apt tomorrow. He has had the same pain before, so i'm hoping it's not an infection, but better to be safe.

I don't know about the "type" of myeloma, do you mean about the type of immunoglobin affected? The consultant never said i don't think….another question for tomorrow!

Originally they planned on giving dad some radiotherapy to treat his damaged vertabrae, and bisphosphonate infusions, but nothing else has been said about it since, so mum is going to push about that tomorrow.

[tomParticipant]

Hi Vicky

Well as for the CDT I was on that and got weaker and weaker as the cycles moved on so much so I had to pack in work:-( but hey its not all bad newa a year later after a succesfull Stem Cell Transplant I am back at work (still on light dutie.s) but hey its work and Money 😀

I got better with the CDT as my cycles went along and was put in remision with that 😀

Good Luck to your Dad in his treatment regime

Tom "Onwards and Upwards" xx

[willywinkiParticipant]

Hi Tom

Dad appears to be going the same way with his CDT, he's getting weaker too. He's not been able to work since March, and we're working through trying to get him DLA and something else but can't rememebr what it is now. He struggling to sleep, despite being absolutlely exhasuted….any tips???? Will this be the evil Dex at work??? He got quite upset yesterday, which was heart wrenching, it's awful to think how he and mum are feeling through all this.

It went well at his meeting with the consultant last week. He has IgG type, which is the most common i beleive. His para protein levels at 60, consultant said that is high, but to be expected at this stage of treatment. His calcium and iron levels have stabilised and his renal function has got better. His skeletal survay showed bone damage in his lower ribs, upper chest, and both humerous bones. It also showed some Spondylitis is his neck which i've not read about. Is this linked to the Myeloma? They've decided not to do radiotherapy treatment for now. They doubled his Thalidomide levels for this second cycle.

He was due to start bisphosphonate, but he needs to have some teeth out, so they said he has to have them done before he can start that.

Hoping and praying
Vicki xxxxx

[tomParticipant]

Hi Vicki

Yes it made me weary and yes strugled to sleep at the same time (strange that Dex) but I got sleeping tablets and took them sparingly as i dint want to get hooked on them 😀

Am not sure if the Spondylitis ur Dad has is connected to the MM but am sure someone will pop on and advise 😎

I am just having four weekly Zometa infusions for my bones (and it seems to be working) and I was told that if I needed to have teeth out I would have to stop the Infusions for a few months before the exrtaction:-0

Good Luck to you all
Love and Hugs

Tom "Onwards and Upwards" xx

[willywinkiParticipant]

The community McMillan nurse had said dad could reduce his diazepam to 1/day from 2/day as his back pain was much better. Dad didn?t like the constant drowsiness from it, and doesn?t like taking pills if [b]HE[/b] doesn?t think he needs them?..(typical man! ? ). It was after this that he struggled to sleep, the consultant told him in no uncertain terms to go back onto 2/day as sleep was more important. His mood really went down in hill during those couple of weeks, and we all feared his depression was creeping back, but he?s doing much better now and sleeping again.

They increased his Thalidomide from 1 to 2 tablets/day on cycle 2, but he developed pins and needles in his hands and feet, so they took him back onto 1. Because of this, they increased his cycles of CDT from 4 to 6. That knocked him a bit too, as we kept trying to keep him up by telling him he was halfway through the CDT. He?s come to terms with it now, and they have tried him back on 2 thalidomide/day again. He?s been on it for 10 days now and no pins and needles. Lets hope it stays that way.

He?s allowed to come out of his back brace as the vertebroplasty has worked a treat. They were worried that some of the cement might have seeped out as his bones were so soft, but it hasn?t and he?s a free man again. Well sort of, he needs to wean himself of it as he?s lost all his strength round his middle and lower back, but it?ll make a huge difference to him.

He?s had his dental work done, and started his bisphosphonate last week. He?ll be having them every 3 weeks when he goes back for his CDT tests. His para-proteins are coming down nicely, 60 before CDT, 37 after 1st cycle and 18 after 2nd cycle. Do they have to get to 0 to do SCT?

For those who had CDT and SCT, did you have a break in between your last cycle of CDT and SCT? Dad will finish his 6th CDT cycle on 19th October, and he?s worried about being in hospital in isolation over xmas ?

My first baby is due in 15 days, and I?ll be on maternity leave so we?ll be able to spend lots of time with Grandad from now on which will be fab.

Thanks for all your support xxxxx

[HelenParticipant]

Hi Vicki
Welcome, I was diagnosed age 56 in feb, like Dai with light chain myeloma and teeny weeny pp level, but caught very early by blood bank when they rejected me because I was too anaemic for them to take blood. It had been slowly dropping for several years and I thought I was just getting arthritis in my back.
I have just a few days until my sct now and I finished my induction chemo in mid June, there is often a gap when the chemo stops to allow the bone marrow and body to recover a bit before the next onslaught so in my case there will be 2 months between chemo end procedure starting.
I wish I'd seen this site earlier, some of the very weird side effects you get and tips in reply would have been very helpful, after all here are the real experts and those who love and care for them.
Helen

[DaiCroParticipant]

Hi Helen,

Have you a date for induction into your SCT? Where are you going for it? 🙂

Try and stay in touch if you feel up to it… quite a few people have tried to keep some sort of blog of their experience… for some reason my blog centred around a series of measured events (e.g. the time it took to get out of bed, unplug and make safe the drip, travel the distance to the en-suite and clock stop as you sit down.) I called my events my 'Stem Cell Olympics' and celebrated each time I set a new record. I'd like to blame the medications but in truth I just set myself goals to distract my mind from the boredom of feeling so grotty. 😛

Gill kept a blog of Stephen's SCT that was far more practical – we held onto it and bumped it forward on the old site – it was a succinct and useful account, full of good tips and resolutions to familiar problems.8-)

Good luck with it… whatever shape, form or adventure it takes.:-)

Dai.

[HelenParticipant]

Hi Dai
I like the way you refer to it all as an adventure , it is how I have looked at it, not one I would have taken from choice but an adventure nevertheless and I view each stage now with interest and trepidation but funnily enough not fear. I am in Newcastle and if there is a bed will have high dose melphalan on 15th aug and stem cell rescue 17th. I have my trusty iPad though reception is often poor I will take it with me and see how I feel. Do you know where gill's post about sct is? Sometimes finding things and remembering where you found them is difficult especially when the memory don'twork so well. Hope your leg is improving?
Helen

[MinParticipant]

Hi Helen,
We spent Tuesday at the Freeman and the RVI Peter had his workup for SCT yesterday at the Freeman. And it will be on the 15th(I Take it the Newcastle you refer to is on Tyne not under Lyme!)
Before that he is in the RVI for his Kyphoplasty (12th)
He was told that the protocol has changed a little since his 1st SCT but again he was told he will be going home if he is well after day 4. As he did last time. Just in time for my new kitchen being fitted…. There go those plans!
Naturaly if he is unwell he will not go home. But we are only a few miles away and will go to ward 36 on alternate days for bloods.
Keith is currently there and he lives too far away to go home so may be a new meeting place for us northerners
When you take your Ice lollies, take a variety or you will never look at a lolly again. Ward 33 is lovely spacious and single en suite rooms. From what I remember there were no TVs in them though that may have changed as it was all brand new when we were in there 1st time.
Regards
Min

[HelenParticipant]

Hello Min
I thought the beach in the background might be familiar! Yes I spent all Tuesday am at frh and we will be racing for the beds together then!!! We've probably gazed at each other across the waiting rooms!! Those unbelievably long waits!' I've been told I can go home after the first couple of days if well and then to expect to return on Sunday for bloods and admission if they are low, it's all a bit of a wait and see, we'll have to have a red carnation system or something:-)
Helen

[MinParticipant]

Blyth power stacks in the background, ,but the only beach you an walk a dog or in our case 3!
Will have to ask Catherine for an introduction. Hope you get the lovely Scottish Dr Susan? for your cannula, she is an expert, other one UGH UGH, blood everywhere.
Before we met her a few weeks ago, Peter was going to sneak into the day unit and ask them to do his canula before reporting to 33. I use the Royal We but of course its Peter who is staying in..
I suppose the bed depends on some poor soul being well enough to go home. Good luck see U there
Min

[HelenParticipant]

Hi Min
Mmmm I was hoping it might be the nurses who put the cannula in, they are pretty good. Yes I'm sure Catherine will oblige and as for the beds…….. We must hope for a quiet weekend before we go in, I wonder how many of us are booked
Helen

[GillParticipant]

Hi Helen this is Gill. I really wish I had kept a copy of the diary/blog thingy that I put on the mm uk site when Stephen had his first Stem Cell Transplant. I have asked the web team if they are able to retrieve the old site info but I think they must be busy with other things.

Maybe I'll email them again and request that they search a bit harder

Good luck with your SCT Gill

[Author]

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