Hi. I had a collapsed vertebrae T7 and I ended up having a Kyphoplasty operation. The minute I came round from the operation it was instant relief. It was definitely the best thing to do as 3 weeks later I had a stem cell transplant, without the operation I don’t think I could have done the SCT. It’s worth considering – good luck
Hi Everyone and thank you so much for replying… Things are certainly sent to try us!!
I have already posted in another forum the following:
My consultant paid me his daily visit on Thursday last week and advised me that I would need to have a hard think about which way I would like to go for the future… He could offer me a double stem cell transplant where he tells me I would probably be unwell for 6 – 8 months and would probably survive at the most 2 years!! (Ouch I didn’t see that coming) or he could carry on with the chemo then put me on the maintenance of Thalidimide, Lenolidimide, Velcade etc and hopefully keep me going for approx 2 years… basically he is asking me do I want to spend 6 – 8 months in hospital and recovering from the transplant or do I want the time remaining to be quality time!!!
As you can imagine my head is all over the place, every time I look at my husband & kids I cry, I can’t bear to think of them without me and I don’t want to be without them…
Not sure if I would be wasting time but I think I have to ask another professional, I cannot just accept this. I did ask him if he is ever wrong and he said Yes!! I told him I am a fighter and I will fight this. He just smiled at me, I feel as though he has already given up on me although he did reassure me that he will fight for me all the way. Maybe I just can’t accept this, well can you blame me. All of a sudden at 50 I feel very young. Hopefully Not, but has anyone else experienced anything like this?
Mandy xx
Hi Everyone.. Wow what a journey!!! I went to see the consultant at the Christie Clinic, by the way he is amazing – Dr Adrian Bloor – he saved my life – Twice! I was admitted on 29th `january as an emergency I had Kidney failure and the Myeloma was so aggressive. The doctor said it was wall to wall inside my body but he didn’t think my body would handle the treatment needed to save me, I was in the critical care unit for 4 days and the family were brought in basically to say goodbye to me. I was totally unaware of anything and no matter how hard I try I still cannot remember any of this time. I slowly responded to the chemotherapy and my kidney gradually repaired. After 8 weeks in the clinic I was allowed home for a weekend, I was so nervous but loved being with my husband and kids (& puppy) So here I am at home at the moment for 3 days but back in tomorrow for my 3rd course of chemo. Got to have another bone marrow extraction (I hate those with a passion – my toes curl just at the thought of it – lol) So I will keep you informed, sorry its been ages since I was last on here, I haven’t even had the strength to type!! But as they say onwards & upwards.. sending all my love and god luck to everyone – take care and stay strong!! Mandy
Hi Carol
Please try not to worry I don’t believe I was ever in remission. I suffered side effect from the start and I told my consultant last week about this as I never felt well. Also I have no faith in him whatsoever this is the main reason for me going to the Christie centre. I just hope & pray that this time around they get it right. Good luck to you Carol I am sure you will be fine
Mandy xx
Hi Carol
I had iced lollies and they seemed to work for me, good luck withheld transplant, I had my first on in May 2013 and in November 2013 was told I was in remission. On Monday I was told the cancer was back so remission was only 7 weeks, looks like I have to do it all agains
Anyway, try the iced lollies and as I said before Good Luck ❌❤️❌
Hi Everyone & thank you so much for taking the time to reply.
I was at the hospital today & had a bone marrow extraction (owwww) they let my sister come in with me which definitely helped me. I go back tomorrow morning for a skeletal X-Ray & I have received an appointment at the Christie Centre in Manchester. Just hoping that whatever I choose it’s the correct regime this time. I will keep you posted. Thanks again Mandy xx
Hi Sims and thanks for the reply. I think is is definitely something I can mention to my specialist, I am seeing him on Tuesday and I think any input is a positive thing.
Good luck & take care
Mandy x
Hi Andy
Thank you so much for your reply 🙂
I am now seeing a Nuerologist on Tuesday so I will mention to him about bone pain possibly being related to the Stem Cell production.
Its a little depressing to think I may have to live like this if it is damage caused by the treatment, I don’t have much quality of life and I am only just 50. My life before MM was very active especially with water sports.
Thanks Again and I do hope you are doing well
Mandy x
Hi Karen
I also am struggling with the 'What Ifs". I am recently in remission but quietly torture myself with the thought of it coming back. I also still suffer with back pain and seem to still be on a fair few pain killers.
I totally agree with you, I would be lost without this site, the people are so comforting and it is nice to chat with others that have actually experienced this condition themselves or with a loved one.
Good luck with everything Karen
Love Mandy xx xx
Hi Eve
Thank you so much for replying – I can honestly say I learn more from here than I do from the hospital.
I have hit a brick wall this week and have been unable to go to work today but I shall try again tomorrow, I have learnt to take each day as it comes.
Hope your hubby is getting there
much love and hope
Mandy x x x
Hello Eve & Thank you so much for your reply.
I have been bought a new puppy which is helping me to start walking again, so gentle exercise (not the best time of year – weather wise… lol) but I am trying to keep active because I find as you say the same for your hubby that if I sit for any amount of time the bone pain seems to get worse.
I am currently taking the following: Amitriptyline 10mg 4 at night, gabapentin 600 mg 3 times a day, oxycontin 70 mg twice a day, celebrex 100mg twice a day then oxynorm (liquid) 20 mls with 500mg of paracetamol for breakthrough pain. I know that sounds a lot or does it? I don't really know how much a lot is, I just know that I am still taking 12 tablets each night and 7 in the mornings and I would love to be tablet free again.
I am back at work part time (i am self employed) so when I get tired or if the pain is too much then I go home but I am enjoying having something to get up for each day.
I am sorry to hear that your hubby was only 6 months in remission, I am dreading the day that it comes back!!
The damage is mainly in my back, I had an operation on my T7 a Kyphoplasty in May just 2 weeks prior to my SCT, I have damaged 3 other vertebras but touch wood they are ok for now. The very top of my spine is showing up very light (as in colour) on the X-rays and I am been watched for that. I had carpel tunnel done in both wrists in September and that worked instantly. Gosh, don't I moan.. lol sorry, I get carried away once i put a keyboard in front of me. I actually managed to keep a journal of my journey from the beginning which was 12th October 2012.
I have never heard of Ad-Cal, I will enquire about this.
Well Eve I have gone on enough, I wish you and your hubby all the luck in the world and pray for us all.
God bless, Love Mandy x x x
Hello All
Thanks for taking the time to reply, it seems that we all suffer from bone pain, although I wish none of us suffered at all its good to know that its not just me. (I do sometimes think that is has come back when I get the pains, but my oncology Doctor told me that that is normal to fret over pains) I just hope that as time moves on I will be able to handle it and stop worrying and thinking the worst.
I have Oxynorm liquid for a breakthrough and I still take Oxycontin 70mg twice a day, along with 11 other tablets, which I would really like to stop. Does anybody else still take this amount of tablets, I don't get why I am still having to take these when I am MM free at the moment.
Thanks again
Mandy xx xx
Hi Lolly
I was the same as Jeff 605, the macmillan nurse filled out the form for me too, as I live on the Wirral and use the Mersey Tunnel to get to Liverpool, I was also issued with a free fast tag so I don't have to pay the toll fee.
Ask the macmillan or District nurse for advice on the blue badge.
Good Luck
Mandy x
Hi Sarah-Jane
Well done so far – I had my SCT in may – spent 24 days in isolation and also for me the weather outside was fab 🙁 lol typical, just my luck.. I have had constant awful side effects from the off. They asked me about going on the maintenance programme and like you I had very mixed feelings, I went to see my oncologist on Monday and told him that I had decided NOT to do it. I said that if anyone would experience side effects it would be me. He replied "Well you certainly have been throughout the mill" I am still confused about whether I have made the right decision… what if it helps my remission last longer is a question I ask myself constantly… oh well I said No and thats that. How long ago where you diagnosed and how were you throughout the Trials?
Good Luck with everything
Love Mandy xxx
Hi Mavis
Yes I have been seeing a specialist every 2 weeks, he has given me an injection of steroids and along with some anti imflammotories (spelt wrong – sorry) this did seem to work for a couple of weeks but the pain and the waking in the middle of the night is back. My husband is very patient but I feel he is at the end of his tether with my constant pain…. I just want it to go away 🙁
I was thinking that maybe if I started swimming or a light exercise class it may help, think I will try anything.. lol
Anyway, thank you Mavis for your reply, how long did you see the nurse for? it might be worth a try, I will contact my district nurse and see if they can arrange something.. (I keep forgetting about them)
Mandy xxx
