[JoanneKParticipant]

Hello everyone

I am feeling pretty miserable tonight and just thought I might put it into words.. Might help so hope you don't mind?!

Dad still in hospital and feeling pretty poorly! His temperature just won't go down and it worries me!! He also has oxygen on and has lost his appetite! On the up side his platelets and blood levels are pretty stable. Need to get him stabilised so he can begin his next course of treatment. His myeloma has relapsed so his first course of treatment didnt prove to be effective.. He is going to start velcade??!! Any info on this would be much appreciated?

I feel so helpless and each night I go to sleep thinking the next day will see his temperature lower and him feeling a bit brighter! It's been a rough old week but surely he must be due to turn the corner.

Thanks for listening and hope all going ok with you all.

Joanne xx

[tomParticipant]

Hi Joanne

Sorry to hear your dad is still not getting better, but am sure when they find one that Fits your Dad he will be doing good then its just trial and error for most of the time.
Cant help with the velcade But wanted to wish you and dad Well

Love Tom "Onwards and Upwards" xx

[JoanneKParticipant]

Hi Tom.. Thanks very much, I'm sure too that all will settle, it just doesn't feel like it sometimes does it?

Hope u have a good weekend

Joanne xx

[meganjaneParticipant]

Hi Joanne,

I am sorry to hear your Dad is not feeling well. My husband Phil is on Velcade with Dex and chemo (I can never remember the name of the chemo) and his only side effects have been tiredness sometimes and his hair is thinning, probably from the chemo. Everyone seems to have very different reactions to everything, my husband loves the Dex days as it takes away his pain but other people seem to find it harder. I know this doesn't really help answer your question about Velcade for your Dad but I wanted to let you know I am thinking of you and your Dad and hoping they will find the best drug to help him soon, the Velcade may be it, fingers crossed.

Megan

[JoanneKParticipant]

Hi Megan.. Nice to 'meet' you and thank you for replying.

I hope your husband Is responding well with his treatment and glad his side effects aren't too bad,

I wish we could get this temperature and infection of dads under control then we can start with the velcade. He has been moved to the high dependency unit this afternoon for more oxygen and I hope this starts to make him feel bit better.

Thank you all for your thoughts

Joanne xx

[jackspratParticipant]

Hi Joanne. I am sorry that your dad is going through a tough time and I can imagine it is very difficult for you.

I started on Velcade 3 weeks ago so I am no expert but just wanted to let you know that so far I am feeling very good. I am working 3 days a week and also running around like a headless chicken with my daughters.

I have it once a week by subcutaneous injection which i believe is favourable as less likely to have peripheral neuropathy.

I have no other treatment with it as I am taking it as part of a clinical trial so not sure how it will compare with your dads treatment.

I hope he will soon start to improve and start treatment.

Best wishes.
Jacqui xx

[JoanneKParticipant]

Hello all.. I've finally got my head together to post an update again.. What a long hard fortnight!!!

My dad has come home from hospital today thank goodness, it felt like it was never ending. He ended up with a strain of pneumonia, just what he could have done without bless him. He is feeling much better in himself though pretty weary and tired! Hopefully he will have good night sleep in his own bed!!

Doc hopes to get started with velcade in next week or two so lets get this myeloma zapped!!

I'm sorry I've not been on for a little while but I've been thinking about you all and hope things going ok.

Once again… Thanks for listening.

Take care

Joanne xx

[tomParticipant]

Hi Joanne

Sorry your Dad was poorly but am pleased he is getting better and in his own home (you cant beat it) its all about rest and recuperation now for you and your dad (yep I bet you forgot about your self??)

Hope Velcade is started soon, and please no need to apologize for not being on for some time as this site is for when you have time and need to ask a Q or to give help as and when you are fit for it and have time.

Love to you and your dad

Tom "Onwards and upwards" xx

[eveParticipant]

Hi Joanne
Sorry you Dad is having a rough time of it,at least they found out what it was,and he is on his way to improving,just forget about the Velcade for a few weeks,just work on getting your dad in better shape and in the frame of mind to start Velcade,because that will be the last thing he wants to do.

Slim had pneumonia and was 21 days in hospital,unable to walk much ,he was exhausted,had to get a wheelchair,slowly got him walking again,mentally it is a bad place for your Dad to be,exhausted,treatment not worked,this is were you have to help him get on his feet,

This all went on with Slim,CDT not worked 80% Myeloma cells in bones pneumonia,then on to Velcade 6 cycles later,5% in bones SCT and now well on his way.STill skin and bones but every day gets a bit better,beginning to plan holidays,and getting back our life after 2 years.Eve

[VickiParticipant]

Hi Joanne

Sorry I'mjust catching up with posts too. I'm really sorry your dad had to go through that and you all are going through it with him! There is certainly no easy route through tis myeloma but we've all (watchers and sufferers) go to believe that it is do able, slim, Tom,david, debs, Helen, Ali's mum. I just go through the list every time I start to lose it a bit 🙂

Hope the treatment starts to work soon

Love and hugs

Vicki and Colin 🙂

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