Hi roset,

I have myeloma, diagnosed last October and now in remission for nine months. It sounds as if your dad is in the first stages of diagnosis and treatment.

The next couple of weeks will be full of diagnostic tests - blood tests, scans etc. The meeting on Friday will probably be a muli-discipliary team (MDT) meeting, where docs from various specialities discuss your dad's results and decide on a course of treatment. He can't reasonably be treated before that except for pain medication. It's also at that meeting that he'll be staged. And myeloma does get staged but won't be until diagnostic tests have been done.

I'm no doctor so this next bit's based upon my experience and reading a lot of websites about myeloma - It's likely that he'll have chemo and radiotherapy, possibly a couple of operations depending on what bones are affected. People react differently to the disease and to each treatment. I got very ill very quickly, unable to do anything for myself. 4 months of chemo with side effects - extreme fatigue, peripheral neuropathy, mild cognitive impairment (chemo brain) and pain. Probably a few others that I can't remember. With copious amounts of morphine I managed to become pain free for a time. 

After chemo I achieved complete remission, one of the 13% who do so after the induction phase. Lots of people go on to have a stem cell transplant but I wasn't a suitable candidate for that. I'd be dead had I had it.

If you visit myelomabeacon, a US site, there are lots of stories of people doing long distance bike rides after a transplant. I can barely walk.

Your dad may need radiotherapy after chemo to any plasmacytomas (tumours, though not the same sort of tumours that other cancers get). Again, there may or may not be side effects.

He'll need to be extra careful with regards to hygeine and people who may have an illness or infection, as myeloma will make him prone to infection and any infection could kill him. Hand washing by everyone connected with him, including himself, is paramount.

I would suggest you visit myelomauk.org. One of the better sites who will send you a free box of reading material.

Expect to spend a lot of time over the next months/year visiting the hospital and if possible, always have somebody accompany your dad to appointments. There's a lot of information to take in.. 

I live in the moment, not worrying about what the next moment, day, month, years may hold. Your dad, yourself, family and carers only need to be sufficient to the moment.

My personal opinion is that you should be as open as possible and talk about all aspects of the disease. Cry when necessary, express and share your emotions and laugh when you can.

I hope that this may be of some help to you. Please feel free to ask any question and I'll do my best to answer.

Best Regards

Taff

Hi Taff,

Thankyou so much for your quick response, it's amazing to hear such wonderful news about the disease,it gives me so much hope.

I will look into the other website that you have said. Can I be so cheeky as to ask your age Taff? My Dad has just turned 71....unfortunately this is what he got for his Birthday. Did you find that the Nurses help you a lot? What about paliative care, have you seen anyone from there?

We are taking each day as it comes and my Dad is marvellous in being very realistic, but he is also so scared. My Family met at the weekend to discuss a few things about my Dads care an comfort , as my Mum is not dealing with this very well. We are hopefully going to make Christmas very special for him and make so many memories for however long we have with him....hopefully this will be for a few years yet. Do I sound negative? I just keep switching from emotion to emotion, my apologies.Do you go to any groups Taff? How have you found them?

Have a good day Taff and take good care.

thanks for all the advice, if you have any further advice ,I am all ears?

best Regards

Roset

Hi Roset,

I'm not sure I do hope, I'm sort of fatalistic about it all. To me, I could last another couple of years or I could go on for 5, 10 or more. Or I may relapse tomorrow and be gone in weeks. It's just not something I think about. For various reasons, I'm unable to ponder on things, which is a bit of a blessing, I suppose. Of course I recognise that others do deal in hope, so I'll hope for the longevity of your dad and indeed all cancer sufferers.

I'm 62, 61 when diagnosed, though I had a fist sized plasmacytoma in my left pelvis for over a year that was diagnosed as referred pain from mechanical lower back pain.

Your dad will have his own team of people, probably headed by a haematologist. He'll also have a dedicated nurse who'll be his point of contact. He may have biphosphonate infusions every month and bloods taken a week before, so you'll be seeing a lot of the same nurses. Everybody involved in my care so far have been marvellous and supportive, except for 1 auxilliary nurse who was on night shift when I was treated for sepsis. A complaint was made and all other nurses were appalled and the situation was sorted. That was a one off but could have seriously affected someone else.

Palliative care is often confused with end of life care. End of life care is palliative in nature but palliative care describes efforts to control pain and other physical symptoms as well as emotional/spiritual care, the object being to give the best quality of life for those with an incurable disease, which myeloma is.

In that sense I have palliative care, with my pain generally controlled, my house adapted to my needs and medication to control various things, such as acid reflux. I've not been seen by or visited any hospice type people and Macmillans were slow to give offered help with form filling that eventually my daughter did. I think they gave me some money though but I can't remember and have nobody to ask at this moment. It's my intention to die at home when the time comes, which also accords with my wife's wishes, her being my carer.

None of us wish to do any sort of counselling or go to meetings and such, it's just not the sort of thing we do. It certainly seems to help some people though, both sufferers and carers, from what I've read, so I'm certainly not trying to put it down in any way.

I can understand your dad being scared, what is it he's scared of exactly; is it dying, is it being in pain or being incapable, or just of the unknown? I think it's best to talk about all these feelings. You and your mum may be scared as well but talking about it can take away the sting. Some of the meds which your dad might be on can cause people to be emotional at times. I'd often cry for no discernible reason but it would be over in seconds.

You don't seem overly negative to me, you can expect your emotions and thoughts to be all over the place as you're coming to terms with things. After all the tests, the MDT meeting and your next appointment with your specialist, when you know the present status of things and a plan for the way ahead, whatever it is, you can get on with it and things should settle down somewhat.

I wanted to be told everything and my family (wife and 6 adult kids), were all privy to all information. They are all my advocates and can speak on my behalf when necessary.

You might find that your dad is more concerned with your family than himself, I know I am. And the most important thing for me is that my kids continue to live their lives, rather than put them on hold or change things for or because of me. Although they've done so temporarily from time to time, especially when I've been really ill or close to death.

You, your mum and any other family carers must be careful of your own health and wellbeing. Caring is a very wearing job and I worry for my wife, albeit it for seconds at a time, who seems to refuse to acknowledge her own health. Particularly lately as her aged mum has just needed to be hospitalised and is now, now she's home, in need of coninuous care. My poor wife's physically and emotionally drained and I can do nothing to help. That hurts.

That's all I can think of for now, hope it helps some.

Best Regards

Taff

Morning Taff,

Thanks for your knowledgable response, i can definitely follow exactly what you are saying, as far as looking after ourselves, as you know it is so difficult as we want to be with Dad all the time, unfortunately I have now got tonsillitis and cannot see him, but I speak to him twice a day, along with my Mum, just to check.

How everything can change in a click of a finger!!!! Unbelievable. It is all so surreal 

Your poor wife, you must be incredibly worried, but you also must make sure that you look after yourself, I’m sure she wouldn’t want you worrying, although it is easier said than done.

You are so right when you say as soon as he starts treatment, we will be much happier and more settled .We are having a bit of a battle at the moment trying to find out what they are going to do with the lump on his spine....they couldn’t give us the name or number of anyone to discuss this with, so have had to go away to find out what is happening....it’s almost like they are treating the Myeloma and the mass isn’t their problem, so they don’t need to worry about it?? We just feel that the communication can be made so much easier, if everyone involved read the notes in full and decided treatment there and then, otherwise the weeks go by............!!!

Thnaks so much Taff, keep smiling and as I keep telling my Dad it’s all about the PMA (positive mental attitude)

Have a good day/ weekend Taff

Best Regards

Roset

Hi Roset,

Just back from the hospital myself, a visit to the stoma nurse. As good as can be expected apparently, though it's still early days. I'm supposed to start eating properly now, but I've been on a chicken soup diet for so long it's hard to think what to try. And my sense of taste is still a bit off. I think I'll go for some rice pudding while i'm making up my mind.

After the multi disciplinary meeting, when you have your next appointment, you'll probably find that your main doc, probably a haemotologist, will pass you on to a surgical specialist or refer you for radiotherapy, if the lump in your dad's back is myeloma related. If it's something else, you'll no doubt be referred accordingly.

I for example, had a very weak left femur, which could break at any time. I was referred to an orthopedic doc who operated and put in a prophylactic nail. Had to keep very still for 2 weeks while I waited for the op. She later referred me to another specialist who sorted out an immobile left shoulder when I had calcific tendonitis.

A general surgeon/bowel specialist sorted out my sepsis and operated to give me my stomas. I go to the haematology ward to have bloods taken monthly and the day case ward for my infusions of biphosphonates.

I see my haemotologist every 3 months now I'm in remission but initially it was every month while I was on chemo.

So you see, although your dad might have a haematologist in overall charge of his care, that haemotologist will be one part of the MDT.

One thing I like to do, is to get copies of all the reports that are written.

Morning Roset,

It appears you dad will be on a different treatment regimen from the one I was on, so I don't think I'm going to be able to offer much on that score. But with any chemo he's going to get good cells zapped as well as bad  and so I'd expect him to get worse before he gets better.

One bit of advice I will offer - try and get control of any pain; your own gp may be the one for help with that. Don't be afraid of morphine, if that turns out to be suitable. If he's on it, he will become physically dependent but will not be addicted. I was somewhat spaced out on it for a time but to be pain free is a huge boost, physically and mentally..

And remember, you all need only to be 'sufficient to the moment'. Please keep us all informed as to how you're getting on. Wishing you the best.

Regards

Taff