[majic30Participant]

Just had the date of 25th june for sct, husband having his back cemented beforehand which has pleased him!   It seems to all be comming together quickly now for him. Lets hope everything goes to plan and that  he doesnt have too many side effects of treatment. Is anyone else due at QE on this same date at all??? We are looking to attend the myeloma support group in worcester on June 17th i think ive convinced him to come along with me so hopefully meet someone there that can share their journey too x

[PerkymiteParticipant]

Best of luck for huby’s cement job and SCT.

The SCT can be a bit dauntin but it is well worth the effort in my opinion. I did not get into remission from it, pps only went to 2.9, but they stayed that way for a number of years.

kindest regards – vasbyte

David

[mhnevillParticipant]

Hi Maj

Just caught up with this post. I do hope your husband’s SCT went according to plan and that his after effects haven’t been too dramatic.

Best wishes to you both.

Mavis

[bandityogaParticipant]

Hope all goes well with the SCT?

We attended an information day in Glasgow and would recommend it.

Good luck

Maureen

[majic30Participant]

Hi all,

 

things  are not looking promising with sct !!! Husband had check up last thurs asked what bloods were from  june 2nd when he was last in brum…… They were 8.3 !! The previous one was 2.8 !!!!!! Bearing in mind he was due in at qe ths weds. Hes annoyed and really frustrated as no one picked this up in 3 weeks, if he hadnt of asked im sure we would hv had a wasted trip.

As of today we are waiting for a cal monday to see if the sct will go ahead, im thinking it might and hope it does as hubby worked himself up now and is prepared, specialist in home hosp is in doubt as levels have jumped quickly?? What does this mean? Cant a sct be done at 8.3 then? He had some fresh bloods taken 17th june so awaiting these figures. I just assumed since they harvested his cells a while back it wouldnt make a huge difference if they were going back in. Its very misleading and confusing when i look here and see others going into a sct with varying pp figures???  And im understanding that the lower the start figure the better the response.

feeling annoyed no one picked it up, dissapointed with keyworker (not had any input or feedback from) my feelings are that had hubby of been on trial route  hed of recieved much better care ( my own belief) !!!  In fact i know he would of!!

the  next step if no sct is that he goes back on treatment for 4 months, velcade i think. Feeling apprehensive atm

 

 

[rebeccaRParticipant]

Hi, this is a real blow when you have mentally prepared the route to take. My understanding, from my consultant only, is you must be in a stable position before you SCT ie. not rising numbers. Numbers vary from person to person as it tends the be the best numbers they can get you in but the one thing that doesn’t vary is the stability factor. I had quite a wait from harvest to SCT and this was the main worry we all had and was about to go on treatment to ensure stability when I was called in. It seemed irrelevant that my harvest had been taken in a stable period. SCT is a big step and you need to go into it at the best possible time to ensure you get the best possible outcome – I would phone the helpline 1st thing on Monday to get their understanding of the situation to see if that matches with whatever they decide to do – could be postponed and a bit more treatment to get your numbers stable again? Whatever, make sure you know what should happen for the best result possible so that you can insist it happens. Remember this is your life, not theirs, don’t put up with any “make do” options.Good luck

Rebecca

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