[cw1985Participant]

aww Dai thats such awesome news i'm so happy to hear good things are on your path! keep us posted on what you get up to on ur gallivanting!!

christin xx

[cw1985Participant]

He just said he had bone cancer he didn't go into anymore detail. For such a young man I'm totally astounded by his bravery I couldn't even begin to think how I would feel at his age, diagnosed at just 17. The journey with Ali was so beautiful and they didn't approach it naively they were very mature and strong about their decisions. powerful and moving!

xx

[cw1985Participant]

just a little update on daddy! he was called in for his 3rd MRI yesterday and they have now confirmed that there is vertebrae damage to a few of them, his spinal cord is fine and now they are just deciding whether he will have surgery or radiotherapy. Bit of a blow to dad its taking him a while to process it all but we had good news from the consultant that his para protiens have dropped from 120 to 25 at the start of cycle 3 which he finishes on tues next week, then one more cycle and an assessment. Gota say the team looking after him have been amazing in hospital and the district nursing team at home they have all made sure he has the best care and get things moving very quickly!consultant has mentioned and dropped hints of stem cell so we're guessing that might be the next stage depending on how the velcade turns out. still huge up and down days no thanks to the dex * insert pantomime booos*!! thanks for all your lovely support dad really enjoys me telling him about all you guys and the advise and stories you all have, he finds it hard concentrating on things so wont be joining the forum just yet but maybe some day!
[b]
yamyam[/b] I'm so sorry to hear about ur dads terrible time I really hope things work out for him have you made a decision yet about the trial?

clara – thanks so much! wishing you and ur dad all the best fingers crossed!

[cw1985Participant]

[b]eve[/b] – thanks so much! great advice were going to start writing things down and planning questions more in between appointments.

[b]Dai -[/b] lecture gratefully accepted!!! You have a fantastic way with words i love it! Dad had mantras before he was even diagnosed, being a surfer the phrase " being on the path" he is well known for and its used quite a lot now and he truly believes he is [i]on the path[/i]. He likes to visualize what is going on to so refers to things like "the fight" in his body when pain shifts etc to help him understand and deal with it I guess. Like mum said yesterday was amazing.. a trip out of the house and NOT to hospital.. he also slept like a baby which was lush! but then today was the complete opposite but we all know that this is a roller coaster and thats just how it goes.. one day at a time is what I'm living by at the minute.
[b]
kay[/b] – thanks for stopping by and I'm so sorry to hear Thalidomide didnt work for you, wishing you the best of luck with the Velcade… def keep an eye on the numbness though dads got it on his belly/sides even though all the rant on about at hospital is fingers and toes!

Tom – Thanks so much we def try to keep it one step at a time… but sometimes daddy does like to think he can take on 2 or 3.. men eh!!

Christin x

[cw1985Participant]

Thanks for all your lovely encouraging replies its really great to hear! We finally have a little progress, the pain team changed the doses in dad's syringe driver and today he is much more relaxed and has gained a little more movement, tiny but its progress! cycle 3 of velcade starts tomorrow so its dex time again >.<

Its crazy how things change so quickly up until now dad was eating like a horse and now his appetite has gone right down, nothing too scary hes still getting his three meals and snacks etc but in comparison its way down so will just have to keep an eye on it! Hes also sleeping so much more but I think this might be due to 2 months of 2 hrs a night and the new dose in his driver!

[b]willywinki[/b] – dad's had two MRI scans so far and both came back that there isnt any damage which is great but on Tues when they went to see the pain nurse she said that there WAS "spots" as she called them on his spine… funny how different doctors give away a little bit more information than others! they are considering booking him for another scan just incase anything has happened in the last couple of weeks as the pain has gotten worse.

Christin xx

[cw1985Participant]

helloo! thanks so much both of you ^__^

badger – dads rash was cause by an antibiotic too but its starting to go down now which is good.

michelle – thats just like my dad, he was so fit did extreme sports we were surfin buddies and now he cant do anything.

hes found the information here very reassuring knowing that there are other people dealing with the same issues/symptoms etc. obviously the getting your head round it is still hard and he keeps dwelling on how this will leave him long term, will he always have pain? will he be able to walk unaided etc? we got a great hospital bed installed in the house yesterday and that has really helped him stay comfortable and stops him getting frustrated with the pain so we are on a slight up today!

[cw1985Participant]

hey my dads just started 3/4 of velcade and just came out in a rash they found out its an antibiotic he has taken to prevent shingles maybe check out some of the oral meds shes taking? dads rash sounds very similar

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