This topic contains 16 replies, has 9 voices, and was last updated by 
Vicki 12 years, 3 months ago.
Hi everyone! I havn't posted for a while as my regular treatment has been taking it's course since last November, and I have now had 7 cycles of CTD which brought my PP levels down from 55 at the start to 16.1 in June. Officially I am in 'good partial remission', which is great news! I had been waiting for the doctors at the brilliant Beacon Centre in Taunton to decide when my preparation for a Stem Cell Transplant could begin. I had a month off the medication which was great – I could actually go to the loo again, bliss! My back pain had been improving, and has been fairly bearable with some Oxycontin. ON 18 July I went into ward 9 for the beginning of the SCT with the 'cycloprime' as they call it about 5g of chemo, and other stuff to protect the kidneys and stayed overnight. They also give you medication to make you wee all the time, so I didn't have much sleep! Luckily I wasn't sick, but I did feel queazy for about 3 days. Since then, I have been giving myself the daily Lenograstim (GCSF) injection, which has been fine. I havn't had any noticable pain so I hope it is working. Tomorrow (30th July) I am going to the Bristol Specialist theraputic centre at Southmead hospital for the Stem Cell Collection. They need 4 million cells (enough for 2 transplants), so I will find out tomorrow if it has worked. An early start – a friend is collecting me at 7.00am (groan!). Watch this space and I will let you know how I get on.
Keep Calm and 'Come on Team GB!!!!!'
Chris
Morning Chris
I am pleased you have been doing Good with your CDT I also did good with that apart from being tired and having to go on sick?
Good Luck with your Harvest and if you do same as I it will all be over in one day 😎
Tom"Onwards and Upwards" x
Hi Chris, I could not agree with you more, the facilities and Staff at the Beacon Centre are first class.
I wish you the very best of luck with your Harvest, I had to have two goes at it. At the first I only got something like 1.4 mil although I cannot remember the number exactly. I managed to get 2.4, in total, from the second harvest. I had to wait 3 months for my bone marrow to rebuild to do the second harvest which of course delayed my final SCT. 2.4 mil was enough for one SCT, because of age a second SCT for me is apparently not an option.
Kindest regards ? vasbyte
David
Good to hear that the CTD did its part in reducing those pesky PP numbers, Chris! 🙂
Keeping my fingers crossed for a speedy collection of millions of stem cells tomorrow!!
Love
Eliz
XX
X
Hello chris,
Good luck to you. My partner Colin was diagnosed with mm last October and is now waiting for SCT. Last week we went for stem cell harvest at south mead too. Colin did not have cyclopriming, and the first go did not work. However we think cycle is the next plan.
As reassurance the staff and doctor there, debbie the nurse and dr sohail (surname beginning with A), were lovely. Kind and informative.
Hope all goes well
Vicki and Colin x
Hi Chris
I wish you well for your harvest tomorrow. My Mum has MM and had her cells collected a couple of weeks ago and SCT 1st August.
Fingers crossed you collect millions of little cells:-D
Keep us informed!
Alison x
I hope everything goes well Chris. I had my stem cell mobilization day last December 19th. I was attached to a drip from morning 'til late afternoon receiving a whole cocktail of things. It was the most tiring day I'd had for a long time but at least I didn't have to spend the night in hospital. I gave myself the GCSF injections at home which saved a lot of hassle, then had my harvest on 28th December, Much to my relief 4.6 million cells were collected in just one session so I didn't have to go back again. They were split into 4 bags ready for 2 SCT's. The day wasn't too bad at all. A nurse stayed with me all the time and talked me through every procedure including what would happen when I had the SCT. The only downside was the rubbish on TV that day!!!!
Hi Chris,
I hope all has gone well with a bumper crop to be getting on with. The setting of dates will follow so good luck and keep in touch.
Dai.
Thanks to everyone for your wonderful support, and messages.
I went to Southmead this morning, but it was a short lived visit. They were very helpful, and Lena and I found the place ok after a fairly long walk around the hospital site – the inevitable building work going on which never helps! The first procedure was to take a blood sample, and we had to wait about 1 hour for the result. They needed a Stem Cell count of 10, and I was only 3, pretty poor, so it was back home again. The only consolation was that the other patient in the Centre (not a Myeloma sufferer) only has a count of 1, so he was very upset. I have instructions to administer another injection this evening, and report bright and early tomorrow again. Frankly I would be amazed if I got to 10, but who knows? I contacted my Consultant who couldn't add any more advice, or magic solutions, except to speak tomorrow if I don't have the harvest.
Thanks again for your messages and advice,
Chris
Hi Chris
Sorry to read the injections didn't throw enough of those pesky cells out into the blood stream 🙁 Lets hope you get the pesky devils out in morning 🙂
Tom "Onwards and Upwards"
Chris,
Do not be disheartened! That is exactly what happened to Colin as well. Day 1 we wnt and his count was 5. There was a man there, not sure what he had but his count was less than 1!. Day 2 we went and colins count had only risen to 7, so that was first attempt failed.
We understood from the nurse and the doctor that this is a very common occurrence first time round. It really phased us as it was not what we had expected. We though stem cell harvest is achieved with gcsf and no worries about not getting the right amount. After some panic on our (well my part!), we spoke to the specialist nurse. She thought it likely that our plan b would be to use cyclophosmahide, with gcsf to try to prize them out….also apparently the gcsf counts can jump up quite quickly according to the nurse, so you never know your bloods might leap up over night!
Good luck to you and happy harvesting…..
Vicki and Colin
HI Vicki, and everyone. Well as I expected my stem cell reading today was only 7, a big improvement on my pathetic 3 yesterday, but they sent me home. The doctor was very helpful, and spoke to my doctor in Taunton about the outcome. he suggested that I may be able to have a different mobilizer drug, Plerexifor, but he couldn't commit because each Health Trust has a different budget. Anyway I have to wait until Friday for my appointment with the Heamotology doctor to discuss the next move. I hope we can find a way forward for my harvest soon.
Good luck everyone!
Chris
Hi Chris,
I'm spitting feathers. This is an obvious example of the postcode lottery at work right here.
To get to 7 is good… it means you need a boost and Pleriaxafor may well have done the trick… it did for me and several others here but there was no-one with enough political or financial clout to make the decision to give it to you.
This is your future well being they are playing with here. Okay, they might decide to double/treble your GCSF injections and that may well work… or they might make the decision to boost the GCSF followed by Pleriaxafor as an emergency measure… but that will be [i][b]after[/i][/b] the 'committee' has met… and you needed the Pleriaxafor today.
I[i][b]t is politics… it is financial restraints… applied to you because of where you live… they didn't apply to me and they don't apply to others[/i][/b].
It is plain wrong… and for me it should be one of the prime objectives of MUK… to ensure that all treatments are available to all patients… pure and simple, no argument, no discussion.
Dai.
Dai,
It does appear to be a bit of a post code lottery! Colins first attempt at harvest, like Chris' failed. He has not been offered,nor was it even mentioned about the option of the prefelixor (sorry spelling!).in fact when I mentioned in to our consultant during the conversation about the harvest she told us it was not available in the south west and that if harvest failed we'd cross that bridge when we came to it……and we are still waiting to hear what plan b is. We are told they have a meeting on the Wednesday to decide but as yet we have heard nothing.
I am getting a bit worried as Colin has been off treatment for at least 6 weeks now and we are no further forward. In fact we had to go Cheltenham yesterday to get his line flushed because we have been given the wrong fluid, and to cap it all his temp went up on the way to 37.8 and it was nip and tuck about whether they would let him home! They did bit with some rattling lungs, and he says he feels under the weather today. At the moment we are still in limbo, and I really hope it does not come down to where we live! The nurses and doctors work so hard, but there is only a finite amount of funding, it seems!
Vicki and Colin x
Dear Chris
Do hope you are able to get enough cells soon so the SCT can go ahead.
All best wishes.
Mavis
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