[annamacParticipant]

Hi all
My names Anna and I m supporting my brilliant 69 yr old dad Rob through the highs and lows of MM.His sct only lasted 9months and was started on velcade when his pp rose to 33.Cycle 4 his pp levels were 6 and end of cycle 5 they re still 6.Does that mean that they have platued and wont go any lower?He s gutted as really wants to get as close to 0 (obviously!) and worries that they wont let him do cycle 6,7 and 8 even though he s plagued with the upset stomache, disturbed sleep and fatigue.I m usually quite good at keeping his spirits up but I have a daughter with a life threatening condition and at times struggle to offer optimism so I have come to the experts here whom I hope can offer some positive suppport that I can share with him
Anna x

[brochoParticipant]

Hi Anna welcome and sorry you have found yourselves members of the mm club. Its great that you are supporting your dad , I am sure he finds it invauable , but it must be tough on you especially with a daughter who has health issue too Please dont feel guilty if you cant always keep his spirits up ,sometimes the down times happen whatever we do ! I think the pp levels could still go down and they may decide to carry on with Velcade if the side-effects arent making life too horrenous for your dad or having too serious an effect on blood levels , such as neutrophils and platelets The best thing to do would be to bring this up at your dads next clinic appointment or get in touch with his specialist nurse,either you or your dad, to ask them to explain things more clearly and tell them what your dad hopes for. Sorry but its hard to give any really useful advice as we are all so different with this illness Please try and make time for yourself too Anna , its very hard to watch over your dad and your daughter too and you need to escape sometimes My youngest daughter has cystic fibrosis and all her childhood was hard knowing all the time we could lose her Luckily treatment has improved so much since she was born that thage expectancy is now 30 as opposed to early teens Mind you she is 26 now and I am starting to feel the clock ticking! I also worry that I will be too ill to help her when she needs me most and that terrifies me . Hang in there Anna , we are all here for you good luck Bridget x

[eveParticipant]

Hi Anna
You have come to a good place for Information and support,so may i say welcome to the club.
My husband is on Velcade,with the added complication of not knowing if Velcade is working until bone marrow taken,so bloods is the only way of telling us about his general health I get results at the start of each cycle,and it just helps me to know he is in the margins.
He is down for 8 cycles in theory this will go ahead unless the Velcade stops working or like Dai who reached 0 and is in remission.pp levels of 6 is good ,but I think if your worried speak to hospital,they tend to make decisions as a team so I do not think they will just with draw treatment,
Its hard supporting people you love,and keeping there spirit up,as well as having your own problems as Bridget said,there are lots on here with added problems.Can you get your dad to go to a support group,or may be talk to Ellen who could put him in touch with someone with Myeloma,or just get him to look at this site,its not all doom and gloom.

Does he tell the nurses about his problems with his stomach because he can have tablets which help,as for sleep and fatigue if its bad he can have sleeping pills.
My husband just goes to bed he listens to his body some times he is up all night,not very convenient but,does not do any good to fight it,go with the flow.
I hope this is some help,I think it would do your dad good to come on this site or go to a support group,the more positive your are the better you feel.Eve

[annamacParticipant]

Dear Eve and Bridget.Thank you for your kind replies it's so appreciated. I go on a forum for my daughters condition and I have found the support invaluable which is how I came here.Dad is terribly proud and scared and asks me to go on this site to filter the scary stuff and refuses counselling supportt etc but I hope to convince him soon.I will write down some questions for his next consultation
Anna x

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