Hi Vicki and Colin, We are thinking of you both on your big day, and I guess that Colin will be kept in overnight for the Plerixafor jab which is nothing dramatic. They are a brilliant team in Bristol, and have a great sense of humour which helped me relax and get on with the job! My results were low on my first attempt, but the P really did the job, and kicked the cells out for collection. I was probably a bit tense too, but the results were good on day 1, and my readings even higher on Day 2. They also allowed for a third day just in case, so they will do all they can to make sure they get all they need.
There is no need to worry, it is a good idea to get a good night's sleep if you can, as it is a pretty tiring day. Be ready to have plenty of extra calcium when it is offered, as I needed some every hour to keep me feeling ok, but it was not too bad.
Very best of luck from Me and Lena, her support is helping me get through this b…y illness, and I am sure you are doing the same for Colin, and together you will kick it into touch!
We are all behind you, be sure to let us know how you are getting on,
Chris and Lena xxx
Thanks Vicki, and well remembered! You must join the Dallas fan club, it's brilliant even if the Bobby storyline is a bit close to home, but it will be interesting to see if his hair falls out – bet it won't!:-D No date for me yet, but I will keep you up to date, thanks for the support and good luck to you both,
Chris
Hi Ali, great detective work and well done! I had a feeling there was a car crash, but why would she disappear? Perhaps someone will kidnap me from Musgrove? :-/
We are off to the coast to relax for a day or two now and recharge the batteries, must remember the Sky+ though!
Thanks for making me chuckle, and I will keep everyone posted when I get my date,
Chris
Hi Marie, Good luck to Steve during his treatment. I am waiting for my date to go in for my first SCT, so I will waiting to see how you both get on. Send my best wishes to Steve and I hope that he carries on feeling well and in good spirits, great to hear of your progress and very best to you both,
Regards Chris
HI Ali,
Didn't miss Dallas, I SkyPlus'd it and watched last night, definitely an 8/10, but whatever happened to Pam Ewing? – I was trying to work out if they had just put in a new actress, but she is Annie, so I have missed out somewhere, and Cliff Barnes is back next week, so the insults will just get better! We need a new discussion Forum for this! 😀
No date yet, so a breather to recover and drink beer.
Cheers, Chris
HI Vikki and Colin, I was sorry to hear about Colin's struggles, but so pleased that your funding has come through, I am sure it will make all the difference because mine seemed to have no problems, so good luck and go for it! I was a bit delayed posting the results as I even managed to go out for my kids birthday meal at an Indian that evening, and have been fine since apart from a slightly dodgy tummy (which may have been the curry! :-/ ).
have you got a date yet for the harvest? I am now waiting for a date to go back into Ward 9, but the Doctors said they wouldn't waste any time so a couple of weeks so watch this space…….
At least no hair saves time in the mornings 🙂
Chris
Cheers Dai!
SUCCESS! HI Everyone, well I'm back after my Harvest, and those guys and gels at Bristol did their stuff, after a preparation at Ward 9 in Musgrove. I had been taking a double dose of the G mobiliser which I did myself each evening for 4 nights, then I stayed in Ward 9 for Tuseday afternoon where I relaxed, watched TV and stuff, and with great ceremony the 'Super G' Plerixifor was produced at about 11.30 because it is most effective 12 hours later. In fact it was only the same jab as the G, pretty small really, and I didn't notice any bad effects, only a bit of dizziness maybe, so I got a good sleep (except for the horrid plastic mattresses in hospital and bouncy pillows!) because we had to leave at 7.00am to get to Southmead in the morning. I also had a much more noticable ache in my lower back, so the drugs were obviously working better than before.
They got me started immediately on the harvesting machine, and did a blood test which came back with 13 score, not brilliant but over the 10 minimum, and better than my 3 last time! I had 5 hours on the machine, but there is a newer one which is a bit faster. I had a bit of the calcium side effects which they warn you of, tingling of the lips, but they give you a calcium infusion which cures it. My problem was I went to sleep, and when I woke up I nearly passed out, but once they sorted me out I was ok to continue. Also your arm gets a bit cramped because you have to keep the 'out' arm straight all the time. Once I got back to Musgrove I heard that the result was [b]2.06 Million stem cells[/b], so a brilliant result, but not enough for 2 transplants. So back in for a second night and more of the both G's again.
At least I knew what to expect on day 2, and because I had been iffy on the first day, I went on the newer machine. This time my mobilising count was 20, so even better, and I was finished the collection by 2.00pm. We even had a visit from an Inspector from the Government HealthCare Executive who interviewed all the patients there (they have about 4 machines at Southmead blood unit). We were able to find out the result of my harvest before we left, and they collected another [b]2.1 million cells![b][/b]. It seems a lot, but this is appearently only 15% of your total stem cells.
It is great that I can now look forward to the Transplant, and I can only praise the brilliant staff and doctors at Ward 9 and at Southmead who are so highly skilled and do everything possible to look after you. There was an infectious cheerful team spirit during the proceedings, and my wife took in some chocolates which were appreciated! She was able to stay with me the whole time apart from the 'needly' bits!
Thanks again for all your encouraging comments, and I hope my story will be helpful and positive to all you guys waiting for your own harvests!
Greetings to you all, both new and seasoned campaigners, and enjoy the lovely sunshine, and wind in your hair/scalp (delete as applicable)!. 🙂
Chris
HI Everyone, thanks for all your awsome comments, it really gives me a boost! I am giving myself the G injections which are double doses this time. I have had no more chemo, and have felt ok. Tomorrow I am in hospital in the afternoon, and having the magic injection in the evening, then being carted off to Southmead by hospital transport. A couple of my friends do volunteer driving so it may be one of them! In preparation I have been paintballing near Bristol for my Son's birthday outing, which was a bit mad, but I survived with a few bruises and aching legs! I am also getting into Dallas, so I have something to focus on during convalescence, and keep me in touch with reality! Episode 1 = 8/10 (I miss Victoria Principal as Pamela Ewing!). Enjoy the summer folks! Chris
HI Joanne, I will add to the other welcomes to the site, and I am sure you will get a lot of positive support from us band of rather 'pressganged' contributors, all forming part of this elite band! My wife found this site, and encouraged me to comment, and once you have made the first step it gets much easier.
It sounds as if your Dad was diagnosed at nearly the same time as me, and has had much the same treatment. I had a lot of back pain, and finally had a blood test which revealed the Myeloma.
Tomorrow I am going for my preparation for my stem cell harvest which will be in Bristol, and as my first attempt didn't work am am staying in hospital tomorrow to have a drug called Plorixafor to make the cells go into my blood where they can be scooped up! I have the 'cyclo prime' last month with a big dose of chemo, and that did make me feel rough for a few days, and my barnet (hair for you non- Londoners) gave up it's grip on my head, apart from a few whispy bits which I arrange into a variety of styles. I didn't throw up though, so I was proud of that!
Like your dad I have been off the drugs for a few weeks, and it is great feeling more normal and able to enjoy a pint or two. In fact I havn't stopped working at all, although it has been a struggle at times.
If this weeks harvest works, I may be in Ward 9 at Musgrove later this month under the care of the brilliant team at Taunton for the big one. I am keeping everything crossed that it works, as it will be great to be able to make plans for holidays etc without constantly working around hospital visits (important though they are).
Sorry to ramble on, but I know how hard it must be for family and carers, and I have been pretty unbearable at times I imagine. It is very frustrating not being able to do what you feel like doing, but I am certainly a million times better than I was last Christmas.
My very best wishes to you and your Dad, and I hope that you find my reply of help,do keep us posted how he gets on, regards, Chris
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
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 Tina, have a great holiday, and well done on reaching your plateau! keep an eye on my blogs, as I am in for my stem cell collection tomorrow, and then will be having the Transplant at the start of September – like you I am a bit apprehensive, but if it works it will be brilliant!
Enjoy the break, you can't go wrong in Dorrzet!
Regards, Chris
HI Helen, thanks for your reply the other day, very useful and glad you are recovering from the transplant, I was surprised to hear how long it took you to recover though! The Beacon Centre have said they are pleased with my progress with the drugs, and may be looking at the SCT as early as Easter which is a bit scary. How did you find the experience?
I am trying to find a buyer or some help for my business as I will be out of action for some weeks, or longer, and need to take the pressure off myself. Like you I am trying to find more time for family and friends, and some holidays while I feel ok. Good luck with your return to work.
Best wishes, Chris
HI Graham, I am at a similar stage to you, and have just started on my third cycle of Chemo and Thalidamide/ Steroid treatments. Like you I had terrible back pain, and rib pain which was put down to muscle inflammation until I had a blood test in November. I am 50, have a family and a very busy life, so it has been a bit of a bombshell to adjust to not doing as much as I could.
The good news is that I am feeling much better after the couple of months treatment which has included a shot of Radiotherapy on my back, because in the mornings I had to crawl out of bed into the loo! It was just too painful to stand up.
I am interested to hear how you are coping with work, because the money side of things people seem to steer away from on this site. Because I am basically a one man band, there is no-one who can pay me sickness benefit, and it will take time to sell my business. The levels of benefits from the Government are just pathetic, although they generously offer some help with mortgage interest – pretty small these days. Luckily I have a couple of income protection insurances, but until something happens there I have had to struggle on at work feeling pretty rubbish on a lot of occasions. I will
have to sort things out by the time I have any stem cell treatment as that will mean a month in hospital.
I have applied for Disbility allowances and a Blue badge on the basis that if you get one benefit, you usually get a load of others thrown in, and I may as well try, given that I probably won't see any old age pension (no use pretending).
Good luck in your treatments, and I would be interested to hear your thoughts,
Regards,
Chris
