[bikerchrisParticipant]

HI, it’s Chris here from Taunton. A few of you may have read my posts last year, but I have been off the radar for a while as I have been back to ‘normal’ life and not thinking too much about Myeloma.
Lena has told me about the re-vamped site, so I am having a look around at a few new members of the ‘club’.
I had my stem cell transplant in October/November last year, and I have now been drug free since May. I get a few aches in my shoulders and back if I overdo it, but generally feel really good, and fully back at work.
I am having 3 monthly checkups with the consultants at the Beacon Centre at Musgrove (next one next Friday), and a monthly top up of Palindramate for my bones but have given up the weekend antibiotic Sepsin as a year has gone past which is the recommended period.
If anybody has any questions I will be happy to answer, how ever daft you may think they are, as at the beginning of treatment everything is a mystery!
An amusing follow up to the SCT is that I have to renew all my childhood jabs owing to a new immune system, so in the last couple of months I have had the meningitus, whooping cough, flu, polio, and various others. Apart from picking up every cold going round, I have had no real side effects apart from an arm like a pincushion (nothing new there!).
Look forward to hearing from you all,
Chris and Lena x

[jmsmythParticipant]

Hi Chris

Glad that things are going good for you. Frank had SCT In March and like you he’s going through th re-vacation. He’s had second lot and brought a lot of material to read about the vacations. We did laugh as all the points started “if your child shows ..,,..” He’s 70 so we don’t know what a 70 year old would experience!!!!!!

Hope things go well for you
Best wishes Jean

[CarolsymonsParticipant]

Hi Chris

Your upbeat post gives me hope. I am going through the stem cell collection process currently (chemo Wednesday, first injection yesterday…..yuk!) and so want to be “normal” again. Is that really possible?

Carol

[meganjaneParticipant]

Hi Chris,

Glad to hear from you, Phil had his SCT shortly after you in December and Thursday this week was the first day almost pill free for Phil as he was finally able to stop taking the acyclovir, the only pill left is adcal once a day and then Zometa once a month. Phil will have his first childhood vaccination on December 23rd.

Megan

[bikerchrisParticipant]

Hi Jean and Megan. No real side effects from Childhood injections, but I seem to have a never ending cold and cough. Have started reading Janet and John books, Tip and Mitten, and hope to graduate to Secret Seven very soon. Chris

[VickiParticipant]

Hey all

Well done chris glad you are doing ok! Hope you are continuing to feel well. Colin still gets very tired but am convinced that’s to Do with the fact he’s on heavy duty pain killers for the initial back fracture. That’s got him down as he gets confident, does a lot and then is wiped out for 3 or 4 days. For me the worry is mm on the return! No ones mentioned re vaccination, I did ask and they said not necessary? Colin finished all the anti virals and antibiotics early may and wasn’t given anything else. This condition is so weird ; he was working 12 hour days for 3 days out of 5 but is then wiped out for a few days. I do wonder what normal really is. Like last night we couldn’t go out as col was so tired, then today he looked really well, went out for lunch and then felt off when we got back and now in bed! Is this normal? What’s it like for you? How’s Tom doing jean?

[jmsmythParticipant]

Hi Vicki

Frank is a bit like Colin. Last week he was up and down. Every day was different. One day he cleaned all the windows inside with no problem. Next day he was knackered. This week he’s been great. Two nights in a row we have been out for dinner with friends and tonight with family and on both nights we went to the theatre !!!! He’s sitting now watching the recording of X factor results and not asleep

Regards the re vacation, when I asked about it just after the transplant she told us “the jury is out”. Nothing more was said and then she went on sick leave and her replacement arranged for him to be re vaccinated. We saw her on Wednesday and it wasn’t mentioned. His potassium/phosphates are very low. Been trying for a couple of months to get them back up but nothing yet. He’s on more tablets and is going every week to see if there is any change. Vicki every time we go to hospital I am convinced the Mm Is back. Colin is still working which is good, Frank has retired but I don’t think he would be capable of working a full day.

Vicki i don’t know about Colin bur Frank can be so moody. One day top of the world next day says nothing and keeps to himself. I just follow his lead

Hope Colin starts to get more energy. Franks consultant told him he has to walk every day (even though his back is painful). He has to set a target and try increase it. He has been more active this week – maybe that’s why he seems to have more – hope I haven’t spoke too soon !!!

Hope things start to improve
Take care
Jean x

[bikerchrisParticipant]

HI Vicky and all! I had my 3 monthly checkup and meeting with the consultant last week, and relieved to say that my PP’s were still stable at 15.5, pretty much as they have been for the last 9 months, although just after the SCT they were higher at about 20. I was pleased as I had been having a few back twinges, probably from overdoing things.
Vikki, I was taking Oxycontin until May, and found that it gave me lots of energy, but then I would feel tired unless I took some more, but then it would keep me up at night. My back has been better, but I have cut down on office work, and only go in on 3 days for quite short days usually, and do some work at home. Driving and gardening is fine as long as I don’t do anything too heavy.
I would say that if Colin is that tired he should cut down on the hours – money isn’t everything.
Some days I come home and just fall asleep on the sofa, but then feel better after an hour or two!
I am so pleased to have my appetite back, and am actually heavier than I have been for about 30 years!
I hope you all have a lovely Christmas
Chris xxxx

[CarolsymonsParticipant]

So to all of you experienced patients….a question. Was the SCT worth doing? I am running out of time to back out now, but I am so scared that I will endure the transplant but not get much time in remission. Of course my decision making is made more difficult by the fact that after only 3 weeks off CTD my paraprotein returned and lambda light chains rose. To SCT or not to SCT ……that is the question.

Carol

[VickiParticipant]

Hello Carole

Merry Christmas! Ultimately the decision has to be yours. My partner Colin had the transplant. He had this in November 2013. At the time it was hard going andnthere are days now when Colin gets anxious when he thinks but to it. However we took the view that we would grasp everything to give him as many chances as possible! I spend a lot of time worrying about remission times but please think about giving yourself every chance including the sct…..it was frightening and we were scared no doubt about that but we are still here 🙂

With best wishes and good luck

Vicki and Colin x

[tonyfParticipant]

Carol, firstly Merry Christmas. Re SCT it’s your decision but let me say that I had a SCT in February, not the most pleasant of experiences, but you can do it. It took a while to get back to normal, but now I feel great my PPs are down to 2. We have travelled abroad and spent time around this country. I now have 3 monthly appointments at the clinic, I don’t take any drugs, chose not to take any maintenance drugs, the only drug I have is a monthly penidronate infusion, which will continue until March 2014. I was very nervous and concerned pre the SCT but looking back I’m pleased I went ahead. Given a choice I would do it all again.
Hope you make the right decision.
Best wishes and good luck
Tony F

[bikerchrisParticipant]

HI Carol, thanks for your post. It sounds as if your symptoms are similar to mine – after my CDT the readings were rising again, I guess because I had stopped taking the drugs.
It is a slightly scary though starting out on the Stem Cell treatment, but it is the best option we all have at present, and can buy precious years. I have heard of some cases where patients have been in remission for 10 years, and others where it doesn’t work at all, but at the end of the day it is a real chance to be drug free, and for me I felt pretty rotten taking so many tablets.
The Transplant was not as bad as I expected, ok, I had a sore mouth, and was sick when I decided I didn’t need the anti sickness drugs (!), and I was very tired. Apart from that I fared better than some patients, and within 3 months I was virtually back to normal, and that was over a year ago and still going strong.
I don’t know how old you are, but at 52 I am not giving up yet, and have another lot of cells in the bank if I need them, and would definitely do it again.
The doctors and staff are in a league of their own when it comes to caring for you, so take their advice and take your time. My one saviour was that I was allowed to have ready meals from the ‘outside world’ – this was a real help, as eating was not top of my list, and the hospital food was not exactly Raymond Blanc! Go for it!!!!
Good luck and love from us fighters! Do keep me posted.
Chris x

[CarolsymonsParticipant]

Thanks Chris, Tony, Vicki,

Thanks for your positive rsponses.

I have just turned 64 and apart from myeloma am/was healthy. All I want is to feel “normal” again and to be drug free. It seems that the SCT is the only way to achieve this. I need to stop reading the U.S. myeloma information where some of the doctors are saying that a SCT isn’t necessary with the newer dugs. But I HATED taking the CTD! I do not want to be on drugs for the rest of my life however long or short that may be!

So as Tom would tell me it is “onwards and upwards” to the SCT and whatever happens….happens!

Carol

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