[daddiagnosedParticipant]

Hi there,

I’ve been lurking a little for a couple of weeks, so I thought it was about time to introduce myself.

After suffering with a bad back for over 6 months, my father was referred to hospital after a blood test showed abnormal results.
Dad was diagnosed with myeloma on the 23rd August and sent straight for radiotherapy for a serious compression at the base of his spine. He had 5 sessions of radiotherapy and we’re starting to see some improvement in his mobility – he was actually able to stand with the use of a frame yesterday (BIG progress!)

He is 58 and is otherwise considered to be young and strong. He has opted to take part in the Myeloma 11 trials and is on the intensive pathway. He started on RCD on Tuesday (3rd Sept) – so far, the only side effects are mood swings and paranoia from the dexamethasone that he’s been taking for a while. But I’m prepared for it to get much worse.

I’ve read everything I can and spoken to the specialist team to try to prepare us all for what is to come but I wonder if anyone with experience of this pathway could perhaps share their own experience or offer the kind of thoughts that aren’t covered in the literature – I hope that if we are prepared, we won’t be blind-sided by anything else.

Dad is on his own, so myself and my fiancé will be his main carers (we are moving him in with us) and we are all as positive as we can be about his future prospects of being independent again, but we’re trying to be realistic about what a long, hard road this is going to be.

It’s all happened so fast, I don’t think we’ve come to terms with it yet but we’re all trying to hang on to the positives.
Thanks for reading.
Steph

[eveParticipant]

Hi Steph
Welcom to the site,you are doing the right thing by gaining as much knowledge as you can,and you are all ready having a taste of the side effects that are effecting your Dad, Dextatude 😛 ,not everyone is effected and some only to a small degree,I take it you want to know about all the blips that can happen,just in case!!!:-( , Well some one told me some of them you cannot prepare for,!!! But once you experience them,you will know next!!!.

What you have think about DD might just sail through everything,it does happen,people will come on here and tell you just that,others are the opposite side ,and there journey is different,I would not go there unless it applies to your Dad,,Myeloma does different things to different people,you will find everyone's story different,that's why they call it a roller coaster.

My husband was on Myeloma trials randomised. For CDT,after 6 cycles and a blip,did not work,so on to Velcade.,that is the first hurdle you cross.before SCT.
1. The Dex is a bit of a bummer!!!,always remind Dad he is on Dex so he at least knows were his attitude is coming from.
2. Dex can hide infections,so you have to watch out for that one.
3. Trust your instincts if you feel something is wrong make that call.
4. Keep a monthly chart,will show how things effect him
5. The dreaded diarrhoea or constipation,it can decorate the floor;-) sorry I have a funny sense of humour. Lol
6. Take one day at a time,give your Dad space,make your own space,let him care for himself as much as he can.
7. Claim any money you can,you will need it,plus blue badge,see Mac Millan nurses they can help with paper work..

Be positive and it will keep your Dad positive.Eve

[VickiParticipant]

Hi there

My partner Colin was diagnosed aged 56. A complete bolt out of the blue. It was absolutely frightening. However he has come good. He also was on the mx1 trial taking revlimid, dexamethasone and cyclophosmahide. He had dial reach, constipation, felt sick but was never sick. He got hyper on dex and couldn't sleep. Sometime he felt sad and would cry. But all of that did the trick and he had 7ccyles of that an then a stem cell transplant. We were absolutely petrified and he had some counselling before he went in for sct; it did the trick and he is now mm free and if gers crossed for a long time to come 🙂

Good luck to you, your dad and family. You can do it

Vicki and Colin x

[GillParticipant]

Hi Steph

So sorry you have joined us but it is a great place for support and help.

My husband was diagnosed with mm when he was 53 One of the worst side of effects of the treatment (for him) was the dexamethasone. Stephen was always so laid back and calm. He was always an absolute teddy bear, but became a grizzly bear on Dex. (I coined the phrase "dexatude")

When I asked his team about it they told me that they didn't warn people because not everybody suffers these effects. It is the only time I got angry with his team of doctors. I would have appreciated being warned.

Good luck to your Dad (and you) Being on a trial means he will be monitored extremely carefully which can only be a good thing. Keep in touch with everybody here

Gillxxx

[WhamsterParticipant]

Hi Steph,
My name is Peter and I am quite new to the site as well, I was diagnosed with MM on July 26th and am now on CVD treatment at Leeds.
You are right the Dex can be a horrible drug but its part of the treatment, I have been told by my consultant that I can stagger the dose ( 10 first day then 2 days of 5 ) and this has helped a lot with the coming down, my dextitude as you put it still stinks though and my wife Janine puts up with far more than she should, stupid thing is I know I am being horrible but can't stop myself, I then get upset with myself for being such a grump, so your dad will most likely feel this way too.

As I say I am a newby on here as well but anything I can help with just ask away, the support and advice I have gotten from the people on here has been unbelievable, they are the best.

ONWARDS & UPWARDS is my motto from the start and being positive makes all the difference.

Cheers,
Peter.(whamster )

[daleandteenaParticipant]

Hi everyone my name is Dale and I was diagnosed with Extensive multiple myeloma, July 1st just over two months ago now and what we can gather, I've had it since this time last year. Yesterday someone kindly emailed me this site as they said I may find it helpful, it has and here I am! I'm currently on PADIMAC phase II clinical trials at UCLH Macmillan Centre London, which includes the drug velcade along with dexamethasone and doxorubicin with monthly zometa for bone pain.
At this moment one of the main concerns for my expanding army of specialists, is how to tackle the extensive bone damage to my spine, upper arm and thigh expressionless. Teena and I (she's soon to be my wife I'm told, and happens to be typing!) are still smiling and don't feel so alone.
Hello everyone it's nice to meet you.

[eveParticipant]

Hello Dale and Teena:-)

My name is Eve,and my husbands name is Slim:-P ,and at this present moment this name suits him:-P

I should explain first you should start your own post!!! You have to be logged in,go to newcomers and scroll to end,and start discussion ,this way you will have a lot of people who see it plus you do not take over someone else's post.

Please introduce yourself ask any questions you want,plus let us help you,we are not all doom and gloom!!!:-S I like the way you say Tina soon to be my wife I am told,you have a good one there hold on to her.
We are all on here at different levels ,on different treatments,and we should all be there to help each other,different ages as well,but the one thing that joins use together is Myeloma,a bloody awful cancer,but one that you can buy time,time to enjoy,put your affairs in order,and time to say a long good bye. Anything from 21 years to a couple of months.At this present time I am enjoying an intense time with my husband and hoping to buy as much time as possible.Enjoy Eve

[daddiagnosedParticipant]

Hi all,

Thanks for the lovely welcome, its comforting to know there is a place to look for support and advice.

Dad is doing pretty well, his mobility is improving and I suspect he'll be coming home this week or next.

Eve – thanks for the advice, I've followed through with your idea of keeping a monthly log which will hopefully allow us to monitor things more closely.
Vicki – thanks for sharing yours and Colin's experience – its a huge boost to read about the potential of this treatment pathway.
Gill – I love your term "Dexatude" and will make Dad laugh with that one!
Peter – Thanks for sharing, you seem incredibly positive. I don't know if it will help you, but almost the worst things about Dad's mood swings with the Dex is when he beats himself up about being a grump – I can deal with the moods, its a small price to pay to think that this will hopefully be helping to make him better.

Steph

[tomParticipant]

Hi all you Newbies and a warm welcome to you all, good Luck on your own roads to remission

Take Care

Tom Onwards and Upwards x

[mhnevillParticipant]

Hi to all of you from me too. I have just been away so just catching up!

This is a great Site. Do ask any questions that occur to you. Someone will no doubt be able to help.

Lots of good wishes.

Mavis

[nerParticipant]

Hi Steph,

im so sorry to hear your dad has been diagnosed with Myeloma. Its such a horrible shock isnt it. Your dads story sounds exactly like mums, she was diagnosed 12 months ago after 3-4 months of teribble back pain and was rushed to hospital for radiotherapy after blood tests and an xray showed something was wrong. The mri showed a mass in the middle of her spine which had caused serious damage to the spinal cord. She was also otherwise fit and healthy and this came like a bolt from the blue! She was 49 at diagnosis. Mum also went on to the myeloma 11 trial. The pathway randomised for her was ctd, and yes there were terrible mood swings and irrational behaviour but this we think was side effects and also coming to terms with being disabled practically overnight!
12 months down the line and things are finlly looking up. Mum had her SCT in july and has been home a few weeks. She's getting stronger everyday and is now walking unaided much better.Hopefully after the next bone marrow biopsy she will be told she is in remission.
So although there is a long road ahead there is a little light at the end of the tunnel( for as long as posibble hopefully)
Times will be hard but never lose your hope. My mum was positive 90% of the time and I do believe her positive state of mind and determination was a huge help to her recovery.
I wish you all the luck in the world on your journey and if you want to ask anything im sure you will find the answers here. Everybody has always been very helpful and supportive (although im quite useless at posting!!)

Lots of love to you and your dad steph
Take care
Nerys xxx

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