[robbojnnParticipant]

Wow was strangely comforting reading your’e post i am in the exact same place had sct in march doing ok on maintenance lenalidomide and bcak every 4 weeks for zometa.

Feel a fraud because everyone is more buzzing than me . One thing you said is so true while on chemo something positive is happening and its worth it,your’e building  up to sct, but after sct consultant every 8 weeks  i do feel like i’m waiting for return which makes mee feel guilty,i dont want it back at least not for several years i’ve got wife and 2 kids who are my world.

But it is a very strange place you can find yourself in after sct feeling useless .. at least i know its not just me, good luck and god bless with your’e fight x

[robbojnnParticipant]

great news i too spent 15 days in  sct  been home 8 weeks ,promise you appetite will return and your’e sense of taste and smell will return to normal

[robbojnnParticipant]

thanks karen and good luck to you

[robbojnnParticipant]

thanks nice to know I’m not alone,interestingly I had same drug combo as yourself. Good luck with everything.

[robbojnnParticipant]

thankyou jan

[robbojnnParticipant]

thats the kind of encouraging news thats always good to hear ,congrats.

i was on myeloma xi had 4 cycles last year not complete remission but very close, i went to see tranplant co-ordinator last wed and i’ve now got my sct timetable, going friday for high  dose of cyclophosphamide,then following wed for gcsf   injections to mobilise stem cells)   then from the following mon in every day  for bloods till im ready to harvest. then the fun part,harvest  admission and transplant. Funny thing with this for long periods of time nothing seems to be happening then all of a sudden its all systems go.I used to sit here willing things to hurry up,move on. Now its round the corner i can’t lie i am slightly nervous/worried etc.  The ridiculous thoughts/questions/worries in my head is vast but i know this procedure is a good thing and i’m looking forward to  a hopefully long remission and  back to a bit of normality with my family.One thing that seems very common due to condition and medication is emotional highs and lows,one minute i’m playing with my sons (14&8)  thinking how lucky and proud i am of both of them,the next minute i’m praying that i see them both grow up,leave school,get a job,settle down etc. The thought of them growing up without a dad tears me apart, being a dad is the proudest thing i’ve done with my life and i enjoy every minute of it. i do think positive attitude has to help so i’m always looking forward and i don’t let it get me down.Sorry for the rant just quite emotional at the moment, good luck to everyone on here   and i shall  update after sct

• This reply was modified 9 years, 10 months ago by  robbojnn.

[robbojnnParticipant]

hi ,im being treated at blackpool victoria  cons-dr grey

on myeloma xi trial just finished 4 cycles  just short of 100%  remission prob 96-97%…

looking at  speaking to transplant coordinator b4 xmas  with transplant prob feb ish

[robbojnnParticipant]

it is hard for everyone but without trying to upset anyone i do think certain opinions should be kept to themselves,i myself have young children who do not know the extent  of my disease at all and the thought of leaving them and my wife fills me with tears every time,i want to see them grow up i want to be a grandfather but i know this might not happen, there is financial burden,emotional  rollercoasters with all of us but i come on here for a bit  of friendly chat/advice and i quite frankly i think it is a shame that someone has left this forum(something i’ve found very helpful). lets be there for each other and not judge others or if we do don’t post it. we are all in the same boat loosely speaking and i wish everyone on here good luck with their treatment and speedy recovery

[robbojnnParticipant]

just out of curiousity whereabouts are you in uk

i’m being treated at blackpool victoria hospital

and as i’m on the same steroids insomnia is common so dont worry

[robbojnnParticipant]

hi mate i’m 43 diagnosed 2 months ago, i know the feeling ups n downs crying etc… its not easy.

just out of interest you mentioned 20 steroids a day with other tabs and chemo. are you by any chance on myeloma xi trial? thats what i’m on, just had a weeks break (one cycle is mon/tues every week for 3 weeks chemo in hospital) followed by a week off.  i’ve finished one cycle, just had week off and i’m back for treatment tomorrow..

hope all goes well and if its any consolation  as rotten as it is being diagnosed with such  a frightening  condition are age is on are side treatment wise.. good luck and keep you’re chin up

[robbojnnParticipant]

recieved

[robbojnnParticipant]

thank you for  all comments very interesting my nurse at blackpool has told me that they never use anything other than local,but i am going to ask next time

[robbojnnParticipant]

 

 

many thanks

[robbojnnParticipant]

U N B E L I E V A B L E   a forum for people suffering with cancer and  some lowlife  mnages somehow to register on here and then try to sell phones/laptops etc…..

i hope there is some kind of moderator who can block  people like this

[robbojnnParticipant]

thankyou all for you’re replies and kind wishes

[Author]

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