[ElaineHParticipant]

k

[MarianMParticipant]

It's nice to know there is someone of a similar age to my Dad with MM, Bridget (although, it certainly isn't nice, if you get me). My Dad goes in on Monday to make the decision whether he wants to have the Myeloma XI treatment or the regular way.

I have to ask the group: What would you choose to do if you were given two options of treatment? Would you take the Trial or the standard non-intensive treatment? My Dad and my Mum are both overwhelmed by the information and luckily, I have my own medical history of Cyclophophomide treatment, so I know partly what Dad's going to be having, but the other drugs, I am just going by the side-effects (which I know are all different in each person). I guess my dilemma is what to say to help Dad decide? I took the handouts the nurse gave us the other day and read them all thoroughly, and highlighted the more prominent points for Dad to understand easier. There was a diagram in the handout that made things easier. If it was me choosing, and I was 72, I would want the standard treatment because at least it has been proven successful and there are more people who have had it. The Trial is still being done, and will be for another few years. Yes, it's only one drug changed, but looking at the side effects and comparing them, I would prefer to have the original standard treatment. But it's my Dad's choice, and I want him to have the best treatment for him. It's so hard.

Last night I started getting upset again, thinking of awful things. I shouldn't think about the bad stuff, but all that went through my mind were thoughts of how my Mum will cope if Dad wasn't around anymore (she can't drive and lives in the middle of nowhere in a small village). I thought about how sick my Dad could get on the drugs, and that he will lose his hair. I am scared for him and for the next 6 months. I even started thinking of being at the grave side and wondering what that will be like. It's horrible and I feel so guilty for having to be away in London this summer with my job and leaving my eldest brother and sister-in-law to cope with it all.

Anyway – I am venting. But it is hard and I know there are people here that understand.

Thanks for listening.

Marian

[tomParticipant]

Hi Marian

Well its been said before "Vent away" Girl

Now what to say about your problems?

What would I choose if I was 72 to be honest (and i have read this many a time) I would go for the standard treatment, as I feel that it works and I would want a Quality of life whilst going through my treatment (well as best it can be) and its a hard decision for any of us 🙁

Just to let you into something that has gone on in our (Elaine and Mine) Life's in 2008 Elaine was diagnosed with breast cancer, Elaine had a lumpdectamy and then was offered Chemo and Radiotherapy (RT), after great discussions and been told the chemo will only be 10% beneficial for Elaine, she then decided to leave the chemo alone and just have the RT and if it fell apart we would look at it then.
So in 2009 I was told I had MM was told by Dr we could leave it for some time before treatment needs to be started or start now I went for the Start now and blast the begger out of my system as I am (well was lol) young and fit, and that is the way I went, two different people and two different ways 😀

And Marian I am what about 18 months post stem transplant and still have my off days and get upset and angry:-/ with the Illness not Elaine 😀 so it is going to be a hard choice for you all, and please dont ever feel guilty about you having to have a life when Dads having treatment, if your Dads anything like me he will want you all to have your own time knowing that you all have other work commitments.

Good Luck to you all (and am sorry if this dunt make sense)

Love
Tom "Onwards and Upwards" xxx
ps feel free to vent anytime xxx

[annParticipant]

Hello Marian we are in such a similar position! In fact I have been trying to post on this site but when I try to register it says there is already my email address on the site! I'll contact muk in the morning. Anyway my husband is nearly 72 diagnosed with smouldering mm in Dec.09 but active mm in March.11 We weren't given the chance of the trial (in fact our hos. didn't seem to know about it) even though we asked about it at the time. However he is just starting his 4th cycle of cdt (standard treatment) and we will probably go on to 6 cycles. It has gone well with only minimal effect such as a bit of shaking, manic energy on steroids and constipation with thalidomide
We were worried after the 1st cycle as the paraprotein had gone down to 4.5 from 35.5 but he got an infection and had to go in overnight for antibiotics and was told to stop the 1st drug for a week. The paras then went up to 28! However the latest tests show 17.6 pp so things seem back on track. Think this blip was due to the infection.
Hope this is helpful to you it does take a long time to get your head round all the terms etc. Good luck to your Dad so glad your Dad has you all around him. Davids family live quite a long way away and my family is abroad but we have good support from friends.

[eveParticipant]

Hi Marian

The myeloma x1 trials are for patients who have not had chemo.
You do not get choice of branch you go on name fed into computer my husband got ctd side other side is rcd'

1 one or two possible chemo potions

2 one or two consolidation options

3 one or two possible maintenance treatment options.

You can come off the trials if you are not happy.and opt for normal treatment,there is a news item on this forum about findings of the trials,but to early to say if its any better than normal treatment,look up Paris Meeting in news section.
info@ukcrn.org.uk email or http://www.ukcrc.org will give you info on clinical trials
this is some thing that only your dad can decide,but it helps to be informed before taking that step at the end of the it is his life.

You will read lots of different viewsmake a list of questions to ask.
eg.1 ask for all blood reports
2 reorts on mri,bone scan,cat scan
3 ask what sought of mm it is,there are different soughts
4 ask about any tumours or lesions,or how much bone damage there is

They will not be able to give you a time limit but do you want to know.

you will lean a lot as time goes on,I would have a good look at the hospital your dad is going to,because at some stage he will go in,find out about the wards he could possible go to.see what they are like.

I have tried to write this as not to influence you one way or other,
has he got to make a decide straight away,ask for more details
they usually have you in for bloods then you start chemo a few days later
they have lots of forms for you to sign,and my husband started dex before trials as you have to build up on steroids

we had to make a very quick decision because Slim was not well at all,you will get a lot of help on this site ,your are going to have times when things seem so bad,but there is always someone a head of your dad on this journey I hope this is useful eve:-)

[brochoParticipant]

Hi Marian I think you are wise to get as much info for your dad re trials to help him make his decision The trouble is there is so much info it can be difficult to take it all in beforehand but as your dad starts his treatment it will all fall into place if you know what I meanWhether or not your dad is on a trial there will always be someone to answer any questions that pop up so dont hesitate The other thing to be aware of is to tell the nurses or doctors of any side-effects that crop up however small they may seem , doses can be altered to make things comfortable for him but tell him not to suffer in silence Paraprotein levels can go up and down a bit so dont get too worried by the odd blip , if you are concerned ask the doctor what their view is . I have only been on one trial and I have to say I was very well looked after , at no point was there any suggestion that the trial was more important than my medical needsIn fact they are very keen to know how you feel emotionally as well as physically When treatment does start, whichever route your dad chooses , your lives will settle into a routine which you adapt to before too long Its natural to worry when its your parents but your dad will know how much he can handle Try and take things one step at a time and if you need to vent thats what we are here for love Bridget x

[MinParticipant]

Hi Marion
There is nothing much more I can add to the excelent advise of all of the above, however one of the things that I learnt at a myeloma infoday was that the people who are on trials, are having more personal attention than normal patients and it is thought that this very fact was a positive one from the patients point of view and consequently most patients respond very well. It is not clear if they are responding to the drugs or the additional persanal attention which in itself brings about a sense of well being and being well looked after.
I suggest you speak to Ellen on the infoline and be guided by her advise as an independant expert. You can tell her more about your dad and his state of health. She will be able to guide you along the correct pathway, whilst leaving the final decision to Dad.
Min

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