[MarianMParticipant]

Hello all. I just heard the news today that my father of 72 years has Myeloma. They actually only took bloods today from a blood doctor who told him it will be three weeks until the next appointment to know for sure.

I have immediately read what I can about the illness but my heart is sinking. I just wanted to get to know the people who actually deal with Myeloma and be able to talk to my dad about it, since he is not a worldly man, and neither is my mum, and half of what doctors say is too difficult to understand.

I have been preparing in my heart for years about what would happen if this sort of thing ever happened to either of my parents, and of course, we all just think it will never happen. It is a bit of a shock, but at the same time, I look at the possible options for treatment and think that things may not be so bad. I feel lucky that Dad has lived until 72 and when I see the possible life expectancy of Myeloma, I think maybe it isn't too bad for a man of his age. But I also think, what if he were in his thirties, and how horrible that would be for a family. My mind boggles.

Let me know what sorts of things you guys have gone through and what should I expect to prepare for. I have also had chemotherapy before, but for Lupus, not Cancer. I can relate in a lot of ways, but I was never expecting the inevitable through my treatment. It would be nice to here some advice from the mouths of those who are dealing with Myeloma.

Thank you.

Marian

[tomParticipant]

Hi Marian

So sorry to read your Dad has MM, but you have come to the correct place here for help and advice 😀

I was told in 2009 that I had MM and have had a stem cell transplant and doing good, do you know what treatment your Dad will be having? as we all have different treatment due to the MM

I wish your Dad well in his forthcoming treatment, and will add please look after yourself whilst looking after your Dad and Mom.

Tom "Onwards and Upwards" xxx

[MarianMParticipant]

Hi Tom,

Thank you for your kind words. At the moment, the doctors have just taken the initial blood tests and he had bone scans yesterday. He has to go back in three weeks (far too long a wait in my mind, but that's the NHS for ya). I wasn't there when the doctor was talking to my parents, but apparently he was a younger doctor who had a very strong African accent, which neither of my parents could understand, not to mention he was talking quite fast and saying all these technical terms to them, etc. So, mum wrote down the Myeloma bone marrow and that was as much as she got. She did ask some questions but the doctor wasn't very easy to understand. So in three weeks time, myself, my brother and my sister-in-law will go with my parents to the appointment and make sure we get every bit of information we can, because I sometimes think some of these doctors don't realise how hard it is to understand some of their java, plus my parents are 69 and 72, so they already have problems understanding some regular words, let alone medical terms.

I will definitely be letting you know what they decide. I don't think the doctor would have said Myeloma if he wasn't sure, plus Dad's had two of the three major tests for it so far, and he will have a bone marrow biopsy at some point in the near future.

Who knows, maybe he doesn't really have it and that doctor was wrong, but the symptoms all lead to it. His kidneys have been affected and they say it's in his blood from his bone marrow, so that sounds pretty close to me.

Fingers crossed. I hope he is ok.

Marian

[kathleenphillipsParticipant]

Hi Marion. My husband was diagnosed 2 years ago. There are many forms of treatment, and they seem to be taylored to the individuals needs. No two people are the same, and the Myeloma behaves differently in everyone!! There is a lot more hope these days, and with treatment, your Dad should have some time yet. It's a shame about the Doctor though, they should realise that we are not all medics! You have done the right thing coming onto this site, during my dark days I always find someone to talk to. Love to you and your Mum and Dad, I do hope his treatment starts soon, and you get a better idea of whats happening.

[tomParticipant]

Hi Marion

Ye its hard even for me and I am 55 years young 😀

As its hard to understand a fast talking Dr why dont you ask to have a copy of the notes that is sent to your dads Dr 😀 that way it can be read and re read until its sinks in 😎

I also have my fingers crossed for your Dad

Love

Tom "Onwards and Upwards" xxx

[AMcGuireParticipant]

Hi Marian, sorry you are having an awful time. I'm Angelina, I care for my husband John who has been fighting MM and Amyloidosis for 4 1/2 years now.

Like you, I thought all the testing was never going to end. John was going to his GP for 6 months or more before diagnosis having urine and blood tests whilst fading away (lost 6 stones and was ghastly). Finally he was diagnosed then more testing began, like your dad – bone marrow biopsies, more bloods, xrays etc. This more intricate testing took another 3 months before they actually started treatment. I understand now that the tests all take time to develop and get back and that it gives consultants/doctors a better picture of what is going on inside the body and so they are better armed to make up your "combination" accordingly. At the time though I was pulling my hair out wishing they'd do something and quick!!

John was put on CTD (oral chemotherapy which I gave him at home in tablets – Cyclophosphamide, Thalidomide and Dexamethasone which was the steroid). He took this for 6 months and went into remission.

I remember VERY clearly John going for his very first appointment back in March 2007 to the cancer clinic …. he met a woman there who wasn't too chuffed – she had just relapsed for the first time with her Myeloma – [b]SHE'D BEEN IN REMISSION FOR 19 YEARS!![/b] Wow, this gave myself and John great hope.

Like you I had also tried gathering all the information I could about Myeloma so I knew what was ahead, ofcourse in doing so I'd stumbled across the 3-5 year life expectancy. This just proved to me that [b]EVERYONE[/b] is very much individual, you can see this from reading many posts on here – there are so many [b]different treatments[/b] given to so many [b]different people[/b] who all handle the treatments and side-effects very differently from each other! Weird really!!

Rest assured your dad will soon begin his MM journey, it just takes a little time (its frustrating waiting though). There is lots of advice here on the website and ofcourse many of us are carers and fighters so can lend you a helping hand along the way too so you need never feel alone.

Hope you get some news soon, its a bit like waiting on your job description coming through from an HR department; once you get a response you'll know what you are meant to be doing.

Sending love meantime
Angelina xx

[MinParticipant]

Hi Marian,
There is just so much to take in at these consultations and it does not help if the Dr doesn't make an effort to ensure you understand them. But don't worry there is lots of information on this site. Download the info guides and read what you can. Not much of it will make sense to you at this stage but as time goes on and he gets into treatment it will all fall into place. Again don't worry about the delay until the next appointment. If your dad was in a 'bad' way they would act immediately and start treatment.
This is a very individual disease and for that reason they need to collect all the data they can and usually they have a meeting of minds so to speak to decide the way forward given all the evidence.
In the short term ring the hospital, most have a myeloma specialist nurse who will put you at your ease and bring you up to date on your Dad treatment and diagnosis.
Most important that you stick to this site for your 'surfing and research' as you can terrify yourself reading some of the american sites most of which are not up to date.
With some types of MM, bloods have to go to different hospitals which are hundreds of miles away and they have a backlog of work hence the reason for a 3week appointment My husband goes to hospital in Newcastle and at the outset his bloods went to Birmingham for instance. They have a machine here now but its main use is on a Monday.
If your Dad is feeling fine and not suffering in any way and getting on with day to day life that is the important thing.
Min

[ElizellenParticipant]

Hi Marian!

Just a suggestion that migh help – I always take a small digital recorder to my doctor appointments and record the whole thing so I can listen to it later and confirm in my mind just what was said and work out what questions I need to ask my doc or specialist nurse.

Mine is very small (the size of a memory stick) and I download the recording on my computer (or it could go on an ipod) and has been helpful so far to remind me of things I forgot or just didn't understand.
I bought it here http://www.gizoo.co.uk/Products/PCGaming/PCGadgets/USBDigitalVoiceRecorder.htm

Wishing you and you family all the best
Elizabeh
XX
X

[brochoParticipant]

Hi Marian I can see you have already been given lots of good advice and I cant add much except to say it will all make sense soon Far better they take their time getting all the right information to treat your dad so that his treatment will be just right for him and worth the wait Good luck to your dad and dont forget we are all here when you need us love Bridget

[BarbParticipant]

Hi.
My husband (64)was diagnosed 1 year ago with MM. He was very sick and needed to have dialases for 2 months every day. He then had a bone marrow transplant and is doing so well.He goes on regular check ups every month.
He was forced to retire but is still happy doing small jobs for our son in the building trade.
The only change in his day to day life is, he has cut out all stress, and that is not so bad.
I wish your father well and for you and your family strength to be good support.
Barb.

[MarianMParticipant]

Thank you everyone so far.

This is all great stuff. I am actually going to read some of these to my parents so they get an understanding of what is going to happen, but also to calm them.

Elizellan – it's funny you should say to take a digital recorder because when my parents said they didn't understand the doctor, I instantly suggested it. I remember a lot of students using recorders in lectures at university and I never had one, but I will look into getting one, particularly since the appointment is a few weeks away and gives me chance to get one from a cheaper website like what you sent me.

Minimouse – I agree that a person can terrify themselves. I already did that. I went to some sites that were so negative and even Wikipedia says life expectancy can be only a year in some circumstance (although I am sure perhaps a few people may have that happen) but it just all sounds so terrible.

There is a lot of positive energy on this site and your replies are already helping me to feel like there is hope. It is good to know that there are people out there that can give great advice and have gone through this. It is only the beginning of this journey and I am sure myself and my family will need a lot more help along the way, so I am glad you guys are here to speak to.

Marian.x

[tomParticipant]

Hi Marian

Your welcome.

I hope when you read these post to your Parents it helped them at this difficult time.
Stick to this site its the best honest and true with few scary bits.

I take no notice of the "life Expectancy" as we have new drugs popping up these days 😎

Catch you Lata

Tom "Onwards and Upwards" xx

[michelleakitt29Participant]

Hello Marian
Just wanted to say hello and welcome to the gang, I dont get on here as much as i would like, but do try and keep upto date and read the posts…..its really hard when you first get the diagnosis, My mum was diagnosed in july 2009 at the age of 64, we have had numerous problems, but mum is still here to tell the tale. You have had loads of advice already, but just wanted to let you know that your not alone in this.

with much love michelle x x x

[MarianMParticipant]

Thank you everyone for your kind words.

I thought I would update you on the situation. We, as a family, just went to see the doctor for the results of my dad's bone marrow biopsy. The doctor confirmed Myeloma. He also gave a prognosis of 5 years, which broke the room down into tears. However, I know that it is a just a statistic and from all your lovely support, I was able to stop crying and see things a little more clear. Of course it was upsetting seeing everyone crying, but now the worst is over and the diagnosis is given, we have many options. What's good is that the nurse we have been given is lovely and she will counsel and look after my dad. She also gave us print outs from this website and said they follow this site so I look to already be on the right page! 🙂

I know he will be given treatment for Symptomatic Myeloma – he has kidney damage. However, his bone scan came back without any damage to his bones! So that is amazing! He will get non-agressive treatment in pill form and we got a hunk of material to read and decide what route to go down before dad's next appointment next Monday.

It seems overwhelming. Luckily, the drug they will probably give him (Cyclophosphomide) is a drug I have had before (I have Systemic Lupus). I understood a lot of the things for kidney treatment so I am hoping that's a good sign and I can explain to my dad some stuff in more human terms.

Let me know if there is any good advice you can give me to give to my family. They are all taking a blow right now.

Marian.

[brochoParticipant]

Hi Marian thnk you for letting us know how you got on As you say the worst is over now, it does take time for it to sink in but as your family see how your dad gets his treatment and copes with it things become less dramatic and urgent Life does become normal again , slightly different but you find a way to live with myeloma I ts brilliant tha you are clued up on things I am sure that will be a great help to your dad. My advice to him is listen to your body and dont try and do everything just because you used to Depending which drugs he is on , steroids especially his sense of taste might alter which is really annoying but as long as he eats even if it is a bit bizarre to crave ice lollies in December like I did!!Great news about his bone scan at least he wont have to deal with a lot of pain There are several people on here with kidney damage, Jo and Mins husban Peter who I am sure will be able to give you good advice Good luck to your dad and dont forget we are here if you need us for advice or to let off steam !!Make sure you get plenty of time doing nice things too love Bridget x

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