[tonyfParticipant]

Hi all, really addressing this post to everyone who is waiting for or who have just had a SCT. Firstly hope you are all doing well. I am now 18 months down the line, on no maintenance drugs and on three monthly clinic visits. Next visit August 6th beginning to start getting concerned, you know how it is!
I had my blood tests today prior to clinic visit and at the same time had the last of my ‘baby jabs’ feel like a pin cushion. You would have thought that after al this time I would get used to needles,but no.
God luck to all.
Regards
Tony F

[Kazzam2Participant]

Hi Tony, I am 19 months post SCT, I had my last baby injections at begining of July, and I am on 3 monthly clinic visits, mine is 14th August. So we are pretty much the same stage. I still have morphine for back, and 6 weekly Zometta. But I drove for the first time since diagnosis the other day! There are more positives than negatives post SCT though, even getting appetite back makes it worth it! I know what you mean about feeling concerned as clinic gets closer. My last visit was with another consultant, mostly okay, he actually phoned me with my interim bloods and urine results, which is a first for me! I am borderline calcium, whatever that means, if it goes any lower I have to come off Zometa. Sorry I am going into blog mode. Good to hear you are okay and long may it continue. Can I just add good luck to anyone waiting for SCT, it is daunting but well worth it. Regards Karen x

[Kazzam2Participant]

ps, sorry I typed in the tag box, hope I have no mucked up your thread! K x

[Ang287Participant]

Hi Tony
Can you remember when you started the baby injections. My husband had his SCT in February 2014 and hasn’t had an injections yet. We go abroad in September and just wondered if he needs some before then. His GP have had no letter asking them to start them and I have chased up the hospital to ask them for a protocol of what he needs and when he needs them but just waiting to hear from them now.
Thanks
Angela

[tonyfParticipant]

Hi Angela, yes I was given a pre printed form by the transplant team when they released me back to the haematology specialists. I had my SCT at the beginning of February 2013, so a year before your husband. The first series of ‘baby jabs’ was 6 months after SCT. I had, pedicel, pneumovax and meningococcal. The second lot was at 8 months and the final lot at 18 months. I think that is it, but have my next clinic appointment on 7th August so will ask then. After the first set of jabs (August 2013) we went to Spain in the September.
So based on the above reckon your husband is about due for his first round.
I’ve said before, strange how different hospitals conduct themselves, you would have thought that there would be certain protocols!
Anyway hope that helps
Regards
Tony F

[tonyfParticipant]

Hi Karen, haven’t seen you in clinic, really pleased that it is all going in the right direction for you. It’s a good feeling when you restart doing all of those things that others take for granted. Still get tired occasionally and have to pace myself doing things. Because I am on the myeloma XI drug trial I go up to the Hope Clinic, bit less hectic up there!
Glad that you are progressing well.
Regards
Tony F

[Kazzam2Participant]

Hi again Tony, I am on the trial too, and go up to the Hope clinic, I agree it is much better, and seem to get seen to much quicker! One day we may bump into each other again. I know what you mean about getting tired. Keep well.

Karen x

[rebeccaRParticipant]

Hi – I am 7 months post SCt (SCT at Leeds) and at no time has anyone mentioned/suggested that I should have baby injections – is the jury out on this one? I remember at Leeds the consultant once said that although you have a new bone marrow your body still remembers? mmm….confused now?

Rebecca

[jmsmythParticipant]

Hi Rebecca

Frank went through SCT in March 2013. On leaving the hospital he was told he would have to have “the baby” injections, right from the start. Within a couple of days,the consultant sent him an email with a schedule of all the vaccinations he needed – with dates etc. A copy qhad also been sent to his GP – who contacted him when they were due. The only one outstanding is pneumonia – he had one about 7 years ago and was told that he only needed it every ten years. Apparently that has been changed and has to be done every 5 years. Hope you get sorted
Jean

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