[tomParticipant]

Hi everybody

Yes I will start new treatment on Monday as my myeloma is active again.
I will be going on Velcade and a wee bit of Dex, once a week regime for four weeks then a week of then same till I get back into remission then 2nd SCT.

We are ready for this battle as I have been drug free for years so my body will be ready for the fight.

Love to you all.

Tom Onwards and Upwards x

[CarolsymonsParticipant]

Hi Tom

You are my shining light …..always so positive – I hope all goes well with the Velcade….watch for neuropathy – many people seem to suffer that with Velcade from what I read. Your 4 years remission after SCT is what I keep in the front of my mind as I am being admitted Sunday for my SCT….melphalan Monday-aaaaaaaaargh!

Carol

[tomParticipant]

Hi Carol
I am pleased I light your path, We have to stay strong and face it head on I am expecting another four years on this route and am sure we will get it 🙂

Good Luck on Monday and dont forget suck ice pops when they give you the Melphan like it is going out of fashion, and use the mouth wash as its also going out of fashion I used bottles of the stuff when i was in hospital and am sure it helped my moth stay less infected, if I went to the Loo I mouth washed if I went past the loo I mouth washedif I burped I mouth well you know what I mean moth wash nearly as much as you blink 🙂

Love and Big Hugs

Tom Onwards and Upwards xxx

[meganjaneParticipant]

Hi Tom,

Good luck with the new treatment :-). Velcade worked well for Phil but he has ended up with peripheral neuropathy in his feet so do keep your consultant informed about any pins and needles or tingling in your fingers or toes. Other than that Phil had very few side effects and his Velcade was given more often so you may find neuropathy is not a problem at all.

Megan

[tomParticipant]

Thanks Megan, and yes they cut it down to just the once a week due to the side effects,and I hope for as few as possible Lol.
Hope Phil is sorted re the PN ??

Love Tom Onwards and Upwards x

[meganjaneParticipant]

Hi Tom,

Nothing seems to help Phil’s neuropathy but it is mostly just annoying, not painful too often luckily. Hopefully you can avoid it but if it does start get them to prescribe you something to help as soon as possible, I think if it can be controlled/stopped early on it is more likely to go away. If you need/want any info in the future about neuropathy just let me know, Phil and I have researched it in depth :-). One thing that won’t hurt and might help avoid neuropathy is taking vitamin B complex, clear it with your doctor but some people think it can prevent it.

Megan

[HelenParticipant]

Hi Tom
Good luck with your new treatment, I’m out the other side of it now and am beginning to feel more like myself, mind its powerful stuff! Insidious too, the PN sneaks up on you in a weird way… You almost doubt there is anything happening and you describe these vague feelings to the docs and all of a sudden you are on half the dose and worrying if it’s going to work properly…..:(
My bloods last week show 8 light chains! So we are calling it remission …hurrah 🙂 and next appointment in 8 weeks.
Love Helen

[DizzylizParticipant]

hi Tom,

hope all goes well monday, kev had velcade/dex sub cut: twice weekly into his stomach
he got very good results zapping his lights chains very quick but the P/neuropthy got really bad and they cut it down to half so do mention it if it starts as they can control it and stop any damage setting in, but I’m sure you’ll be vigilant tom and get many more years free of this bloody decease! keep smiling!

love liz & kev xx

[PerkymiteParticipant]

Best of Luck Tom. I got pulled off of Velcade after 3 Doses, PN big time. I am now on Rev/Dex which seems to be working well although I must admit to getting really peed off with the Dex!

Anyway – onwards and upwards.

kindest regards

David – Vasbyt

[sanParticipant]

Good luck Tom for monday, i think that velcade is now given subcutaneously as this reduces pn, you will sail through i am sure San xx
Helen so good to hear that you are doing well and feeling better, San xx

[tomParticipant]

Hi Megan::Am pleased its not too painful all the time but am sure the niggle knowing its with you is a bugger 🙁 Thanks for your advice, I hope phil is soon sorted x

Hi Helen:: pleased you got through it and I know I will also 🙂 am pleased you are in remission and so soon its a great feeling I can tell you. x

Hi Liz and Kev::: well mine will be once a week and just a wee bit of dex he tells me 🙂 and yes I will be eeping an eye out on it and for it as my young bride will be x

Hi David :::Thans for that, it must have been a begger getting too of it so soon ?? but at least they had something else ready for you Good Luck my Friend. Vasbyte x

Hi San::: yes am told its a Little scratch on the tummy Lol but I still wont be looking ha ha,and I think I might wear my sailors hat to help me sail through it all he he.

Many Thanks to you all and enjoy the week end.

Love Tom Onwards and Upwards xx

[StanstanParticipant]

Best of luck Tom. Hope it really goes well. Onwards and Upwards. Thinking of you. Love Us x x

[jmsmythParticipant]

Hi Tom

Good luck on Monday and with such a positive attitude as yours, I hope the treatment goes well and you get a hell of a lot more than 4 years. Love to you and Elaine

Love Jean x

[tomParticipant]

Hi Stanstan, thanks it’s gone be another doable just hope it goes into remission faster so am not too near Xmas for my SCT this time.

Hi Jean, we are also expecting more than four this time round, yes we are both strong folk and will crack it.

Love to you all.

Tom onwards and upwards xxxx

[kevinParticipant]

Good Luck and best wishes for your upcoming treatment. Just celebrating one year since my second SCT and still in full remission.
All the best
Kevin

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