[MothasParticipant]

Thanks Megan, sorry to hear your move to Devon didn't work out and hope you manage it sometime in future.

[PerkymiteParticipant]

Tom do a search for "Musings from ward 9". I did a post whilst in ward 9 at Musgrove Hospital and I up dated it every day during my SCT. You might find it interesting.

Kindest regards – vasbyte

David

[MothasParticipant]

Thanks David, I'll check that out. Any personal anecdotes appreciated.

[mhnevillParticipant]

Hi Tom

May I, alonside everyone else, welcome you to this Site – sorry you have had to join – so young too.

I am 67yrs and, like you, had a plasmacytoma needing surgery followed by radiotherepy. I them had approx 16 months before next crash! Then followed six cycles of CDT. I am now PP free and hoping for a long remission and working on my mobility! I am not going down the route of SCT, but I wish you all the best for your treatment. I can understand, that at your age, you will, on your Consultant's advice, want to throw everything at this wretched disease.

All very best wishes.

Mavis
Mavis

[MothasParticipant]

Thanks for the reply Mavis, I wish you all the best in your continued remission.

[SharonMParticipant]

Sorry you've had to join us Tom :{
If the Myeloma's not really having any harmful effect as yet, why are you having a SCT so soon? This is a very individual disease as I'm sure you know (or will come to know) but I was asymptomatic (no symptoms) for 4 yrs and wanted to put treatment off for as long as possible. I have spine damage but I'm on Zometa so hopefully this will slow down. I had my SCT last New Year (determined to make this New Year's Eve better. No way am I having a nasty blast of chemo in hospital again. No way to bring in the new year!) It's taken me until a month or 2 ago to feel like me again. Had a hell of a time but…am still here. It's not been easy. Worst year of my life in fact but I got through it and you will too. As I said, Myeloma effects people so differently. I'm sure your consultant knows the best plan for you.
Good luck. Get over this Christmas & New Year – Next year will be different for you x

[MothasParticipant]

My consultant said that even though organ end damage was very slight (organ being the spine), it's best to go in hard and early if you can. From what I can make up this is an ongoing discussion in MM – whether to use a lighter or more dramatic treatment in early diagnosis.

I guess I have to trust my specialist. Not looking forward to the process, but looking forward to it hopefully kicking it's arse 🙂

T.

[wendyduffieldParticipant]

Hi Tom

Sorry that you have to start treatment, you will see from all the replies that everyone responds differently to the treatment, has different side effects and the SCT. I had a tough time on treatment which included two cycles of PAD and seemed to be ultra sensitive to everything but I continued to work part time throughout.
My employer was quite flexible and I had my own office (important as you are immuno supressed on treatment) so I guess it depends on what you do, how you feel and whether there is that flexibility with your hours. PAD treatment involves numerous and lengthy visits to the day unit during the first 8 days of the cycle so that is also disruptive apart from any side effects you experience.

However I recovered fairly quickly after my SCT and was back at work after two months (and working at home prior to that).

Hope you dont get too many side effects and my advice is take it one step at a time.

Wendy

[MothasParticipant]

Hi Wendy thanks for the reply.
It sounds like you responded really well to your SCT and to hear that you managed to continue working during chemo and picked up again quickly after the transplant is inspiring.

Best of luck with your continued recovery.

[BlueParticipant]

Hello everyone
I am new to this forum. I was diagnosed with MM in 2009. After a hefty treatment with dex/Velcad hand a self cell transplant I went into remission late 2010. Sadly I relapsed this summer and am undergoing more treatment. My brother has been found to be compatible so early 2013 I am to have a transplant using his cells. The last transplant went badly and I spent most of the time in intensive care with acute septicemia, coming through it by the skin of my teeth. I am terrified and getting very stressed at the thought of yet another transplant especially as there are no guarantees of anything. I love my brother and his gift is the best Xmas present anyone can offer. Has anyone had such a transplant and can they give me reassurance. I feel so alone. Thanks
Blue

[wendyduffieldParticipant]

Hi Blue
welcome to the forum, shame about your relapse. I understand that with the donor transplant if its a reduced intensity one you dont get the same side effects because you are not getting the chemotherapy that causes it. I did a bit of research into it because I was recommended to have one but in the end they couldnt find a fully matched donor so I only had an auto SCT so you are lucky that your brother is a perfect match. There are one or two people on the forum who have had one, Jet Black, she also has a blog which you will come across if you search under her name and a few others as well.

I also suggest you discuss all your concerns with your haematology team, they may also be able to put you in touch with someone thats had one.

Wendy

[tomParticipant]

Hi Carol

Sory you have relapsed and i wish you luck on your 2nd SCT and say a big thank you to your Brother from me am sure its better than a scarf for christmas 😀 Lets hope this one will be better.

Love Tom "Onwards and Upwards" xx

[bandityogaParticipant]

My husband was diagnosed with MM on 24 October after suffering with back pain since April. He has gone to the docotor on a few occasions and was referred to a specialist in July who advised him he was stiff and to have physiotherapy.He had physiotherpay for 13 weeks but he was still in pain. He then asked to be referred privately. The doctor sent him for an mri scan and they kept him in hospital. He had to have a spinal operation as the tumour was holding up his spine and when the steroids started attacking the tumour the spine was collapsing. He has lost the power in his right leg and his hands are very weak. He started on CDT but was verry anxious and depressed so he was changed to Velcade which agreed with him. He has had to have further surgery as the wound was infected. This was over 2 weeks ago but the wound is taking time to heal.

This has left us both very shocked that so much can happen in so little time. I miss him at home so much and pray that he can come through this. He is only 56 and was so fit and healthy.

[Author]

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