This topic contains 24 replies, has 9 voices, and was last updated by 
Vicki 12 years, 1 month ago.
Hello to everyone! My dad was diagnosed at the back end of last year and although I have read all your posts I have only just plucked up courage to join!! I've never done this kind of thing before but your posts have brought me comfort!
My dad was diagnosed because of routine blood tests and following blood transfusions almost every fortnight! He began treatment just before Christmas! I'm sorry not to know all the drug names but he had chemo, steroids and thalidomide on three weekly cycles. This really knocked him for six and it felt like nothing was ever going to get any better.. He went from always being out and about to hardly having the strength to do anything. He was very emotional and I have to admit I struggle with this and find myself 'hiding' away if that makes any sense.. I would leave it all to my mum and sister and for that I felt dreadful!!!!
Anyway in may about six months on he was drug free and he became dad again.. Out and about all the time and generally fit. He hasn't had blood since January and his para proteins have dropped significantly! It is fantastic to see him so well.
The point of me posting now is that he is going to have a stem cell transplant now all being well and I am terrified!! He has had one round of injections but unfortunately there wasn't enough cells so we start again tomorrow with chemo then injections then harvest.. I am just worrying about how will cope with what comes next and just need some words of encouragement? Can you help me.. And all my family!
Thank you all very much… You are all amazing
Joanne xx
Hi Joanne
Glad you posted, it took me a while too but the support gained from this forum is amazing and most welcome :-). I recently contacted the nurses as well and the responses are so detailed and quick so if you ever want to know anything, theynare great. My partner Colin was diagnosed late October 2011 and like your dad it was shocking. The treatment Colin had was similar to your dads except he did not have thalidomide, he had revlimid. Colin was emotional on those drugs too.
Like your dad Colin is waiting an SCT and has had a hickman line put in to take the drugs in and blood out etc. We were very worried about that but he/we are coping well with it. The SCT we too are very apprehensive but there are lots of good news stories on here……read musings from ward 9,that gives a blow by blow account and it helped us. Colins first attempt at harvest failed 🙁 and so did his second one this week, so just be aware of that and don't panic (like we have!), because we Are told this is not uncommon. Hope you dada second harvest goes well..Colin had the chemo prime your dad is about to have and it did make him feel a bit poorly but lasted for a few days then he started to feel better again.
All will be ok, think of Helen, Tom, debs, Ali's mum, David perky mite, Stephen……they have all got through it and check out some of their posts. It keeps us going 🙂
Vicki and Colin x
Hi Joanne
Sorry you have had to join us on here:-( But on a positive note I dont know how I would have coped without this place to ask questions and have a good old moan. There is always someone that comes along to give friendly advice and encouragement and always someone who has "been there" before. Please use the info guides on this site also and be prepared.
My Mum was diagnosed last year in November had had RCD like Colin (above). Its been 3 weeks now since she came home from having her SCT, that was the thing me and my family were dreading the most. Have a little look at the discussin My Mums SCT under the treatment section. My Mum has a very positive attitute and once she gets her head around something she just goes for it. The SCT is not nice, no use pretending im afraid but it is do able (easy for me to say!).
I understand why you "hid away", I have been the opposite – im 38 years old and for the first time ever I feel like an adult (not sure if I like it though!):-)
I hope your Dad collects those lovely stem cells this time:-)
Please keep us posted
Ali xx
Thank you both so much for your replies.. And believe me I've read and re read all your posts to get as much guidance as I can and I take so much comfort from the success stories on here.. Both Colin and your mum Ali are coping extremely well with their own experiences.
I think, from reading on here, I understand the process and I'm preparing myself for how poorly he is going to feel.. What I forget to tell myself is that he will come through the other side and will slowly but surely begin to feel better! My dad also has acquired VOn willebrand disease which we think had a part to play in the myeloma so his hospital stay (if it goes ahead) is likely to be around five weeks. This disease means his blood doesn't clot so we worry about bleeds!
Anyway today is chemo day so he and mum will be setting sail for sunny Middlesbrough in a little while. He will be having the sct at Newcastle freeman hospital and is under professor jackson who I see has a video on this website. Mum and dad both think he is marvellous so that is positive.
Thank you once again.. It is already helping me to write my thoughts down so thank you for 'listening'
Joanne x
Hello Joanne
I'm so glad you "plucked up the courage" to join us. I must admit, I was one of those lurkers for several months before I joined and now find myself chipping in regularly!
I was diagnosed in May 2011 and like your dad was on what we abbreviate to CDT for 6 cycles.
The drugs forced a change of lifestyle on me and my husband. From being as fit as a flea and full of energy I had to do everything at slug speed not knowing for certain how I'd feel from day to day.
It had a strange effect on me emotionally too. Made me very insular and "clingy" to home.
However, I was always very positive about the outcome and seeing my paraprotein levels going down every month helped me to tough out all the side-effects and come through the tunnel. 🙂
I presume your dad hadn't been feeling too good before he was diagnosed with MM as you say he was having tests for something else.
If he's got through CDT he's done well, and if he's been OK'd for a Stem Cell Transplant (SCT) it must mean he's young and fit enough to cope with it. So positive things there!
Don't be terrified of the SCT. I can assure you that although not a very pleasant experience, I was grateful to have it and 7 months on I feel totally normal again. Actually I felt heaps better at about the 2 month stage.
Stick with us on here and ask anything you like. Lots of us have "been there" and can speak from first hand experience, others can help you with going through all the various procedures from a carers point of view.
Never forget the carers. Their lives are turned upside down too. My husband David had never had to cope with any illnesses in his life and was suddenly thrown into totally unknown territory.
It was a test for him too and I'm pleased to say he's been a treasure and has discovered facets of himself he never knew existed! 😀
Take Care Joanne and best wishes to your dad…….
Michele x
Hi Michele..
Thank you for your reply.. It just feels good to 'talk'!
My dad had regular blood tests due to medication he was on so he wasn't feeling unwell at all which was why this came as such a shock. Everything happened so fast after he was so anaemic! Blood transfusions every couple of weeks and he was extremely breathless!
I am pleased that docs deem him fit to go through sct and that is very positive . He is 65 years old.
I will keep you all informed of progress and my best wishes go to you all and your families.
Joanne xx
Hello Joanne
I had my stem cell transplant in May of this year, just under 4 months ago. Like your dad I had previously been treated with chemo, steroid and Thalidomide. The worst part of that for me was the steroids but apart from that it wasnt too troublesome, although looking back I realise I was far from the person that I was prior to the treatment.
For me the transplant was as I had been told to expect it to be, which was very challenging. However, once I had "turned the corner" which seemed to happen overnight, i just continued to get better ~ slowly but surely.
On Monday of this week I returned to work and it was the best feeling I have had since being diagnosed in November last year.
So my opinion is that although stc is a tough journey the rewards make it worthwhile.
My children worry about me and i hate it that they are so young and have this burden. I am sure your dad will also be worrying about you. Its just what we do when we love someone.
I hope your dad has a good response to the preparation and the transplant itself.
Best wishes
Jacqui
Hi jacqui
Thank you for sharing your experiences with me and congratulations on returning to work.. I bet that was a great feeling and also to get some kind of normality back?
I do wish I wasn't such a worrier I seem to have sooo much whizzing round my head!!! I just want to get on with it but I realise from Colin's experiences that this isn't always possible and we need to take one step at a time.
Dad was fine last night when he rang from hospital so we will see how he is feeling this morning.
Than you…
Joanne xx
Hello…
Well after what was meant to be an overnight stay in hospital for chemo before injections, dad has come out today after three nights! He got a temperature and also his blood counts had dropped so needed transfusion! He is ok now though and home and starts injections tomorrow! It is all so unpredictable eh?
Hope everyone managing to enjoy a little bit of september sunshine like we are up north.
Take care everyone..
Joanne x
Hi Joanne,
There is no doubt that this mm thing is a roller coaster. Colin has been in and out of hospital more times in the last 10 months than I can remember!. But each time they made him better and we moved on….if only we can get these blooming cells out :-(. there always seems a little something to tax us. Today Colin phoned me at work to tell me his hair had started falling out….yep a little tug and there was a good handful (and now for my next trick!. I feel so sad because whilst Colin tries to put a brave face on it, he doesn't like it. And neither do I, for him. However it's another chapter in the journey to beat mm. It is a bit gauling though considering the cycloprime did not work for Colin :-(.
What I'm trying to say, is to give you reasurance that there are lots of ups and downs, but many positives too. Sometimes there are blips…..all part of the journey.sometimes Colin and us watching all cope on different days, depending on our mindset on the day.
We really hope all goes well for your dad
Vicki and Colin x
Hi Joanne
Sorry I seem to have missed this post? so a late welcome to the forum.
As the great members here have said its a rolercoaster ride getting remission with this MM but it is doable as I like many can confirm.
Just a run down on mine (am now 57) found out in Jan 09 I had MM, had 5 courses of CDT then harvest leading up to Stem Transplant in Dec 09 was off work for a year am now back at work (light dutie's) and doing great no pills or anything. would I do the same Transplant route again? too true I would, its not a walk in the park butfor me well worth it.
Good Luck to your Dad and all the family in the road to remission 😀
Tom "Onwards and Upwards" xx
HI Joanne, I will add to the other welcomes to the site, and I am sure you will get a lot of positive support from us band of rather 'pressganged' contributors, all forming part of this elite band! My wife found this site, and encouraged me to comment, and once you have made the first step it gets much easier.
It sounds as if your Dad was diagnosed at nearly the same time as me, and has had much the same treatment. I had a lot of back pain, and finally had a blood test which revealed the Myeloma.
Tomorrow I am going for my preparation for my stem cell harvest which will be in Bristol, and as my first attempt didn't work am am staying in hospital tomorrow to have a drug called Plorixafor to make the cells go into my blood where they can be scooped up! I have the 'cyclo prime' last month with a big dose of chemo, and that did make me feel rough for a few days, and my barnet (hair for you non- Londoners) gave up it's grip on my head, apart from a few whispy bits which I arrange into a variety of styles. I didn't throw up though, so I was proud of that!
Like your dad I have been off the drugs for a few weeks, and it is great feeling more normal and able to enjoy a pint or two. In fact I havn't stopped working at all, although it has been a struggle at times.
If this weeks harvest works, I may be in Ward 9 at Musgrove later this month under the care of the brilliant team at Taunton for the big one. I am keeping everything crossed that it works, as it will be great to be able to make plans for holidays etc without constantly working around hospital visits (important though they are).
Sorry to ramble on, but I know how hard it must be for family and carers, and I have been pretty unbearable at times I imagine. It is very frustrating not being able to do what you feel like doing, but I am certainly a million times better than I was last Christmas.
My very best wishes to you and your Dad, and I hope that you find my reply of help,do keep us posted how he gets on, regards, Chris
Hello all and thank you for replying to me…
Dad had an appointment with his doc yesterday and was told his myeloma was active again so we have everything crossed that the injections get these cells boosted!! Mum and dad seemed pretty calm about the whole thing but I just seem to fall apart!! Although vicki you are quite right each day is different and when I have good days they have bad days! I hope you and Colin are doing ok.. Despite the hair loss!
Tom and Chris.. Thank you for your replies and Chris good luck with your harvest.. When this week is it? Dad goes in on Monday for harvest (hopefully!!).
Take care and I will keep updating…
Joanne x
HI Joanne
Not a problem, and i wish your Dad luck with the harvest on Monday.
Tom "Onwards and Upwards" xx
Hi all…
Ok so not great news from me today!! Dad been in hospital since Saturday and harvest is a non starter again today! We think he is still suffering from after effects of chemo last week. His platelets have dropped so having both platelet and blood transfusions at mo! He has also had temp but think that's settled now!
No idea where we go from here now.. I'm stuck! Will see what doc says today I guess.
Vicki and Colin I think I know exactly how you both must be feeling now, it seems like a mirror image of where we are at mo.. We feel so flat!!
Hope everyone had good weekend and take care
Joanne xx
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