[CatherineParticipant]

Hiya,
so on June the 26th 2013 we received the news that my dad (aged 68) has multiple myeloma. 6 months prior to his diagnosis he had been suffering from severe shoulder and back pain. After a slight stumble at work, leaving him unable to drive and his back pain causing him to "shuffle" as he walked/ hardly being able to walk at all; we finally persuaded my dad to go to the doctors.
This led to his shoulder pain being diagnosed as 'a torn rotator cuff' and his back due to 'wear and tear' and so was sent for physcio. After a couple of physio sessions he was discharged and was referred back to the doctor to discuss key hole surgery. During this appointment the doctor pursaded my dad to do some more routine blood tests, due to their being little records on my dads medical history as he hadn't been to the doctors for over 60 years and the previouse ones showing anemia. That afternoon, he received a phone call saying he must report to EMU immediately, due to being dangerously ill with hypercalcaemia.
I can't begin to imagine what emotional and physical struggles that he began to go through that day and how afraid he must have been. The next day we received the news of his condition and the further news that he had actually got a fractured shoulder. He began his treatment shortly after. Thankfully due to his age, fitness and health he is able to partake in a clinical trial which involves cycles of chemo drugs followed by a 6 week intensive form of chemo (a bone marrow transplant).
Currently he is on his third cycle of chemo, which he is repsonding too very well, luckily he has not recieved any abrassive side effects e.g. vommiting or hair loss. His shoulder is now comfortably strapped up, but with little hope of it healing naturally so an operation is needed. This has left him very dependent on others, which frustrates him because all he wants to do is get back driving.
Already within a matter of months he has become so frail, and is constantly short of breath and so very tired when he's not on his steroids. Now his independence and quality of life has been taken away. However, I admire his strength and determination to make the most of everyday, with a goal of achieving something each day too. His positivie out look on the situation is amazing, he is a fighter and will tackle everything he faces with great enthusiasm, and determination, this isn't going to defeat him.
Now at the age of 18 I'm having to face coming to terms with my dads condition. An so joined this forum in the hope of finding some answers to a million questions that I have.
As I'm off to university on Friday I want to know what to expect when I come home?! Also I welcome any advice that any of you may have on dealing with this news and not being able to see my dads progression regularly.
My dad has also been experiencing mood swings of erratic, aggressive behaviour followed by terrible lows, is this common? Also shaking, and shortness of breath is present most days, is this also normal?
He has also been taken off one of his drugs due to it causing low platlets, what does this mean? will this mean that his intense treatment is delayed?

Thankyou so much for taking your time to read this post and would be even more grateful for your replies.
Catherine

[dickbParticipant]

Good morning, glad you could join us, although not a very pleasent place to be. As for your father, take things one step at a time.

The mood swings and aggresiveness may be because he's been prescribed a steroid called Dexymethosone. They are known side effects as well as being hyper and not sleeping. You can usually tell who's taking Dexy because they are posting in the very early hours of the morning. It isn't nice stuff but very necessary.

The frailty, tiredness, anger, emotional rollercoaster and fear are all normal. I would say all of us here have suffered one or more of these symptons. I'm sure you've done your research and noted how MM damages the body's immunity system as well as bones and Kidneys.

Now as for you, you have your degree to concentrate on. Only he can fight the MM and part of that will be psychological – having a Positive Mental Attitude. He will probably be bolstered by seeing you go off and do something with your life and that will help him no end.

So, there are a lot of people on this site with little bits of info that add up to a lot experience with MM. There are a few stalwarts on the site who will offer very good advice when needed and some that won't hold their punches, so make the most of it.

[eveParticipant]

Hi Nicola

Welcome to the site
First thing you should do is ring Ellen,number top of this page she can send you booklets to help you understand Myeloma.:-)

Your Dad seems to be made of tuff stuff,you do not say if he has some one to care for him!! Or how much you will see him,how far is your university ,also were he is being treated,this helps sometimes because,he might find someone on this site who goes the same place.
Your Dad will just want to get on with treatment and think when it's done it will all be over,well it does not work that way,it's often the damage caused by the Myeloma that is the problem.:-S Eve

[PerkymiteParticipant]

Hi Catherine, As usual I agree with Dick's sensible advice.

I was 68 when I was diagnosed, I was a fit man who always kept in trim and ate the balanced diet, did not smoke and drank in moderation well ok little bit of distortion there :-D. I broke my neck getting out of bed and found a dam great tumour had eaten my 4th vertebra for breakfast.
That was in 2009. I have done the Stem Cell Treatment, 2nd line treatment of Velcade and am about to start 3rd line Revlimid. Do not worry about the names at the present time, you will pick them up the more you correspond.

My point is from what you have described your Dad and I are about the same so I would not think he is about to drop down dead. He will be there to see you Graduate in fact he will probably latch onto it as one of his driving forces. So do not let him down young lady :-/

As Eve, another one I always agree with, has said, speak to Ellen the call is free and she will send you lots of information and she can answer many of the questions you have.

Best of luck

kind regards – vasbyte 🙂

David

[mhnevillParticipant]

Hi Catherine

I am sorry for your Dad's diagnosis and the need for you to join us on this Site.

I agree with Eve and David, you will get specific advice from Ellen on the MUK Helpline, but be assured that your Dad's responses to the chemo are quite normal. The combination of drugs do make you tired and lots of people have a difficult response to the steroids.

It is unfortunate that your Dad also has a broken shoulder to cope with, but again, the good news is, bones do heal.

I am the same age as your Dad and have been diagnosed for three years. I am now in remission following chemo and I didn't have a Stem Cell Transfer (SCT). This was by my own choice.

All best wishes for Uni. I'm sure your Dad will just want you to get on with your life and would be mortified if his MM disturbed your chances. I find that having a positive attitude does make a difference so your Dad has this going for him as well as your love and support. Regular phone calls telling him what YOU are doing will be a real boost for him.

Do ask any questions you like and one of us will try to help.

As David says, don't despair. Even in the three year's since my diagnosis several new powerful and effective drugs have come on stream. More are in the pipe line.

All very best wishes.

Mavis x

[handbagladyParticipant]

Hi Catherine,
I too am a newbie to the forum and you and I are in a very similar situation. My Dad is almost 80 and has MM – His symptoms of tiredness, aggression, mood swings and shaking are the same as your Dad and for us both, as daughters, it is extremely difficult to see our Dads going though such a difficult time.

I am almost 400 miles away from my Dad (he's in Essex and I'm in Scotland), but we speak on the phone and do Skype calls on the computer all the time.

We as a family are just taking one day at a time at the moment because the initial treatment my Dad had did not work too well and he may have to have some further treatment beginning in November (depending on his blood test results).

To be honest, I am not sure how much more medication he can take given his age and fragile physical state at the moment, but there are things we are looking forward to and it is these milestones that we are focusing on.

A lot of the side effects of the drugs for MM have become much less severe for my Dad since he finished his treatment 2 months ago and you may find this happens to your Dad too. He may be having a very difficult time at the moment, but with your continued love and support, he can fight MM all the way.

I really hope you're OK – best of luck with your studies and I hope you are enjoying Uni!
Take Care, Jo.

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