[jmsmythParticipant]

Hi all

Got a letter on Monday to say that Franks appointment was brought forward 'due to unforeseen circumstances' to today. We saw registrar and she launched into – on Tuesday you will come in for a blast of chemo- and went on rabbiting. We were confused until it was explained that chemo on Tuesday and then 2 injections a day for a week and then on The Wednesday in to hospital to be harvested. She talked to us as if we had been in discussions for some time. Anyway the start of the SCT transplant. All Christmas activities canceled and the worse one of all is Frank and son Steven supposed to be going to watch United on 15 Dec. frank is gutted about that and I am petrified about the treatment. Just cant get outdoors Paul out of my head. Will be looking ip all old posts to go over the procedure

Best wishes to all
Jean x

[meganjaneParticipant]

Hi Jean and Frank,

Phil and I found things a bit confusing as well, we sometimes get the feeling that all the doctors and nurses assume the other doctors and nurses have told us things so it ends up that nobody tells us anything!!! Phil was just given his injections to take home and we worked out from the instruction booklet enclosed with them how he should inject himself!! Phil managed it though and yesterday they harvested 7.75 million cells so Phil is all set for the transplant on the 17th.

I have already re-read all the posts on this site in preparation:-) A few points for the harvest that helped Phil may also help Frank. Phil ate a banana a day in the lead up to the harvest and this allowed him to avoid the nasty potassium pills they give you if your potassium levels drop. A glass of milk the morning of the harvest also helped with his calcium levels.

the actual harvest was fairly easy just very boring for Phil as you can't really do anything as you can't move your arms for about five hours. Phil also didn't really have any side effects from the chemo blast, he just felt tired, but to be fair he has been feeling fairly tired all the way through the treatment so far.

Any questions, please ask.

Megan

[VickiParticipant]

Blimey Jean and Frank,

That's a bolt out of the blue eh!. Sorry about the united but if that's man it'd then no loss there LOL (sorry Frank!).

It is weird when the SCT cycle starts, I can remember saying to friends how nervous we both were and they said, but that's what you've been bravely working towards! And they are right, however it does seem so so daunting when the reality starts! Know what you mean about outdoors paul, I'm still worrying about that!

The gcsf injections were something that I stayed well away from!. I knew I couldn't have done it so it was either Colin or the district nurse. Colin got the district nurse to do the first lot and thereafter he did it himself. The hard bit for us was waiting for the cd34 count result at, I our Case Bristol, to see if harvest could start…..

Good luck both. As I said to Megan Jane, start a thread so that we can keep tabs and provide support to you both x;-)

Vicki and colins x

[tomParticipant]

Hi Jean and Frank

Its a shame a lot of the Dr's and Consultant tell us how it is is if we have done all the study's he/she has done for the last 10 years or more :-S But hey ho am sure its what we have got to get used to (but mine is a slow talker and stops if he sees am confused Bless)

Hey I aint a Footie thingie?? what do they call them erm oh ye Supporter:-S Honest why would I want to lol.

Now a serious note Paul ? am sure we all think about those times that we have lost some one in our little (though getting bigger) BUT you have to push that to the back when you are going to have treatment and bring the succsefull threads to the front of your mind am sure that what outdoors Paul and his Family would want so get stuck in to those Good Threads and put your mind at ease, Later is the time to rethink about Our Paul.

Good Luck with it all and dont forget here I am 3 years on and NO drugs put that to the forefront of your minds 😀

Love Tom "Onwards and Upwards" xx

[jmsmythParticipant]

Megan, Vicki, Colin and Tom

Thank you so much for your posts I have followed SCT posts for some time but when it arrives on your door step its another story. Thanks Megan on the tip about bananas, I have started a note book. Hospital told us before harvesting for Frank to try and eat cheese and drink milk to build up calcium. My best wishes to Phil and Megan I will have so many questions and do so appreciate the support

Vicki it really was a bolt out of the blue it was like a case of "have I been asleep and missed something". Vicki we have four sons two are Liverpool supporters, two and Frank are avid United supporters s of course there is merry hell In our house when they all get together. I will start a thread when things are up and running. My best wishes to Colin

Tom, what can I say, you do make me laugh and keep me in good spirits. But you have to realise Alex (sir) is the be all and end of all (not my words Franks words) one day I'm going to record the 5 of them at it – they do my head in!!! On a serious note. I just cant get Paul out of my mind. He was just so positive and loved the out doors and then life was so cruel to him

My thanks to you all and I know I can rely on your support in the coming weeks. It means a lot

Best wishes to you all
Love Jean xx

[jmsmythParticipant]

Hi Megan

iWeb we saw the registrar yesterday ( she wasn't the brightest tool in the box) but after she gave us the dates for chemo and harvesting she told Frank to stay away from people. Was Phil told this as well? We were talking this morning and Frank says he can't understand this as he is only having the one zap of chemo. Megan ani info will be appreciated.

Thanks and nearly 8 million cells brilliant good luck to Phil on 17 th. if all goes to plan frank will be having his on 19th
Good luck and best wishes
jean x

[meganjaneParticipant]

Hi Jean,

Phil was not told to avoid people but we have found the advice and details a bit non existent since he finished his induction treatment! Most of what we knew about the harvest phase came from this forum 🙂

While Phil was doing the daily injections he actually did not end up going out much as they had to done at 4pm everday but because of the injections his neutrophil levels were 18 (!!!) on the day of the harvest so he was like superman 😀

I think as long as Frank takes the normal precautions of avoiding any known sick people and frequent hand washing it should be fine to see people as it is only one shot of chemo. Phil gets the tube to and from all his hospital appointments and that is as many people as you can get!

Megan

[AliParticipant]

Hi Jean and Frank

When you actually get the date I think you naturally get the wobbles (we did). It doesnt matter how much you prepare and research and in a way, look forward to it. Best foot forward and all that now. Theres never a good time, but over Christmas [i]and[/i] missing the footy seems abit unfair.;-)

We are all here to help if we can. Try and focus on the New Year, with Franks new cells:-)

It seems you have a nice big family to rally round you both, and at times like these you realise how much you mean to each other.

Take heart from those that have been through SCT and are enjoying their remission.

Big hugs to you both Ali x

[jmsmythParticipant]

Hi Megan and Ali

Thanks so much for your posts. I really appreciate the support. Don't know what I would do without the forum and all my cyber friends

Take care and thanks again
Love Jean xx

[BabsParticipant]

Hi Jean,
I had my SCT in March this year, I do remember being told to try and avoid getting colds or infections prior to the harvest and on the day they asked if I felt well, yes I did, (except for the bone pain due to the GCSF injections which went away almost imeadiately the harvest commenced.)They took blood tests and we had to wait to see if all ok for the harvest, about an hour later the results came back and the harvest commenced,
On admittance to Kings for my SCT the Dr came to see me and had to tell me they had found I had the beginnings of infection in my cells,(this is why they told me to try and remain cold and infection free but we don't actually recall having this explained to us at the time!) bad news I would definately feel ill on the 7th day, good news they knew what it was so would have the correct antibiotics to treat it ready for me. Gutted but reassured by the fantastic positivity of all the staff, Yes on day 7 I was ill, treated so swiftly and looked after so closly by the nursing staff.
I had not found this site at this time so did not have the support it offers,since finding it I am amazed how many of us with MM there are.
Positivity is the only way as Tom says,
Good luck to you both
Babs

[HelenRParticipant]

Hi Jean,
Good luck! I had my harvest in October, and unlike Megan and Phil I had the opposite problem of too much info… The transplant coordinator nurse sat me down and told me everything very clearly and then the consultant came in and told me the same things all over again 🙂 He is German and very meticulous! They also gave me a DVD called 'At Home with Granocyte' all about the injections, not exactly blockbuster material and I have to confess that I never watched it. Anyway, I just wanted to pass on that he said if you get an infection during the ten days you might not achieve the right level of stem cells to do the harvest. He drew a little graph that showed how the level goes down over the first couple of days due to the hit from the chemo, and then your system goes into overdrive to recover so it goes up and up, helped by the GCSF injections. They are aiming to catch a nice high peak on day 10 or 11 or whenever they do the harvest. It would be pretty annoying to do the same thing all over again, it felt like groundhog day to me anyway to have the same injection at the same time every day for 10 days. So I didn't really go anywhere during those days apart from to hospital in the car. To be honest I wouldn't have felt like massive socialising since I also was hit pretty hard by the cyclophosphamide, vomiting etc once the antisickness wore off after 8 hours – it did pass, but I wasn't expecting it, so just wanted to let you know in case it happens. I'd been sick also during my last cycle of induction chemo so I think my body had just had enough of all the drugs and was starting to protest…
Hope it all goes well,
Helen

[jmsmythParticipant]

Hi Babs thanks for that. I am trying to get things straight in my head so I can give Frank Informed information. When I think of your post it does make sense to try and keep him infection free as possible. One of our sons tell s me that I am OCD when we have visitors they are made to cleanse their hands. I will pass your info on to Frank as it will help him understand why the medical staff are concerned

I hope that you are well and thanks for the info
Love Jean x

[HelenParticipant]

Dear Jean
My word that's a bolt from the blue, do they plan to get him in for transplant before Christmas too, or just do the collection? Better book into someone else's house for Christmas lunch I think, it's going to be very busy. Keep us posted on the progress
Love Helen

[jmsmythParticipant]

Helen thanks so much for the info. I am so glad that I posted my concerns on the forum as the replies, info and advice that I have had has made things so much clearer and put my mind at ease a little. I can't help but worry as my mind runs riot. The registrar had said that if he put the SCT of for a a time he may relapse andd then he would have to go through the CDT again. I thought Frank was going to have a hear attack as he told her that he would not go through that again.

Thank you for your good wishes and I hope you are well after the treatment

Keep well
Love Jean xx

[jmsmythParticipant]

Yes Helen a complete bolt from the blue. Doing the blast of Chemo on Tuesday and then injections twice a day till the following Wednesday and if all goes well they will harvest on the Wednesday. No date for the cells to be put back as we were told that Leukemia and lymphoma patients get first dibs. It was quite a shock but we are seeing consultant on Tuesday to sign papers etc and Frank has a few questions for her – should be fun. Hope you are well and that whooping cough has done the proverbial !!!
Take care
Love Jean x

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