[sonnysueParticipant]

I am new to this site. My father in law has Myeloma, diagnosed 2 years ago. He had a long course of chemo and has been fine since March. However at his check up last week he was told that the cancer levels had increased. He is 81 and a diabetic, he has lost 2 ribs and some of the base of his spine through the condition. He has been referred to a different hospital and is due to see the consultant next week. We are obviously really worried and are wondering whether it will be bad news. We are travelling the 130 miles to go to the appointment with him as he doesn't take in everything he's told ( I think he's quiet nervous, understandably). I was just wondering what questions we should ask and do you think we are going to receive bad news???

[PhilipandfionaParticipant]

Hi

I saw you had 105 views and no replies. I wonder if this is because nobody can tell you for sure what the doctors are going to say except them. If you spend all your time between now and then worrying, you'll ahve no energy left to listen and take in what is being said.

Worrying is natural, but entirely wasteful. You can't change a thing with it, but you can change the envirnment around you and your father in law. That's not to say you should plaster a fake smile on your face and pretend you're not worried, but acknowledge it, and then get on with the important things like preparing your questions etc.

If it is bad news and it's come back, you need to find out what his options are. Will they start treatment immediately, or will they wait? What would be the advantages / disadvantages of either course of action?

Take a pen and paper and write down what you are told.

Good luck x

[VickiParticipant]

Hi there,

It's SO difficult not to worry…….I think you must just try to ask lots of questions, clarify if not sure and don't be afraid to ask ask and ask again!. I worry all the time about my partners mm coming back but I know deep down that's a waste of time, as we then can't enjoy the good time!

I don't know what the doctors are going to say but numbers can go and up and down but doesn't mean it's coming back. It could be the body regulating itself, however we don't know. I was told to make sure you went along to the consultations so that you were a second pair of ears to gather all the info and ask questions.

Best of luck

Vicki and Colin x

[eveParticipant]

Hi Sonya

Sorry about your father in law,if he has been referred to another hospital,may be its something else,even after 1 st treatment they check the bloods for a long time,gradually tapering off to 6 months,so I cannot see it being missed!!!!
Urgent referrals are seen within 10 days,so that might give you some idea how bad it is.
Then they would do test before they make any decisions.

If he responded well to last treatment there is no reason why he should not respond.to next treatment,after first remission it is said you get 1/2 the time again,but even if you get to the stage of no more remission,maintenance. Can extend the time.
They can help the bone damage with an infusion. Of Zometa every month,but I would have thought he would be having that any way over the 2 years!!!
Try not to read to much into his damaged skeleton ,as the pain can be controlled plus bones helped with Zometa,but the Myeloma is a different thing,that has to be controlled by Chemo,and plus Myeloma batters the immune system.
If you go into video on here,you will find lots of doctors nurses and patients explaining about different things concerning Myeloma. Good Luck Eve

[sonnysueParticipant]

Thanks for your replies. Well the appointment was quite positive, I was prepared for them to say that there was no further treatment available as he has tried thalidomide which gave him bad side effects and he had to stop taking. Then chemo which worked but I don't think his body could stand another course. But, he now going to try so linedomide? I think that's what its called. Does anyone know anything about it?

[avantrompParticipant]

Hi
I just want to let you know that I have been taking Revlimid for over 3 years with positive result and have had minimal side effects. I find that the greatest problem with MM is that nothing is predictable because everyone responds to treatment in a different way. However there are now many different medications and combinations and hopefully your father-in-law will soon respond to treatment. Good luck.

[mhnevillParticipant]

Hi Sonya

Just to say hope all goes well for your father in law. It is wonderful that there are so many new drugs now. So many been developed in the three years since I was diagnosed.

Best wishes, hope the new treatment works well.

Mavis

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