[DaiCroParticipant]

I finished my first cycle treatment last Thursday… with the 'empty' week off for it all to settle down, get to work and then start again.

I had a consultation yesterday where my consultant told me that they were going to scan for lesion)s) on my sternum 'just in case'.

I felt supported, in the loop and ready for cycle 2. The only fly in the ointment was a dull ache that had appeared in my sternum late on Sunday evening and was noticeable yesterday, otherwise I felt extraordinarily good.

I got home from the hospital yesterday afternoon, no Go, no £200, suddenly feeling very sore and very, very tired… so I crawled into bed for a couple of hours.

I will be in touch with my specialist nurse this am and see How/what/why/where we go from here. Something happened, because I went from feeling Ticketty-Boo to aching all over, with a horrendous cramp in my lower legs that is undoubtedly PN of the first order (not my numbed feet watered down version) my whole torso as bad as when I first arrived in Nottingham 2 years ago and difficulty getting out of bed.

Crikey, I hope my Velcade adventure is not over before we start. If it is just the Velcade working then it is 'Tough Love TM'.

Later.

Dai.

[MinParticipant]

Hi Dai
I have a very vague recollection of Peter feeling absolutely washed out and worse on his week off when he was on velcade…….he feels similar now with Revlamid! whats that all about then. He did have several 'days off' the medication as really beats the heck out of you. Hope they get to the bottom of it as its seen off your immediate enemy so to speak, with the response you told us about last week.
Good Luck
Min

[AMcGuireParticipant]

Hi Dai. Awe, bless you. I'm sorry you are experiencing discomfort and have become locked in the prison of pain.

All I can add is that John managed 2 cycles of Velcade before all the problems started. Prior to the diahhorea etc. he was coming home from hospital after his injection thinking it was all a big joke as he had no symptoms whatsoever!!

I dreaded his "break week" as his mood became very low and he, like you say yourself, crawled into bed and slept ….. and slept. It fascinated me just how instantly he fell asleep. He's always been sleepy with all the breakthrough pain relief he takes along with his normal patches; but with the Velcade in the mix he was a little dormouse and was spending more of his day with his eyes closed than open. I believe this is what caused him to fall down the stairs – his incredibly tiredness – so please do take care.

Its a big old nasty drug which does its job in a brutal way. I know the consultants said to John that if the symptoms became too much then they would stop – this scared the living daylights out of us!! However, since his bad reaction the "powers that be" have decided to look at Velcade once again for John but on a lower dose and only once per week injection. His wonky kidneys have to right themselves first though, but at least Velcade hasn't been completely pushed out of the picture. Maybe your team will look at doing this also?

Keep thinking those positive thoughts, you can do it! We're all behind you waving pom-poms and cheering you on.

Sending love and healing thoughts
Angelina xx

[DaiCroParticipant]

Hi Min and Angelina,

Thanks for your concern and support… I'll be fine. I rang my support nurse and she has told me to increase my Gabapentin to double dose in the evenings and perhaps even a Amitryptiline for dessert if I feel like it.

I was feeling so good and then, out of left field, I was back in a place which I was not awfully fond of first time around.:-S The PN was a cracker. 😛

Now, excuse me a moment while I flex my biceps…..

Yes, Janet confirmed that they are my biceps…. so here's the macho bit. 😉

As long as it is mainly a matter of pain control and allowing Velcade free range with my body as it goes about its business… then I can cope. I am not going to stop it (and I get the feeling that my team don't want it to stop) or ask for it to be reduced just yet.

Bit of a shock tho' – :-0 .

Dai.

[tomParticipant]

Hi Dai

So sorry to hear about your "Bad Stint" Hope it gets better soon 😀

Not one for the written word Dai, but strength has always been my thing (in me head lol) so I am sending some of mine 😎 So if its "Only" (love the way you say it) a matter of pain well you and I plus others can beat it. all the best with it

Regards

Tom "Onwards and Upwards" 😎

[BADGERParticipant]

Hello Dia

sorry I caanot give you any comment about Velcade but I put a lot of thought and prayers for you all if I could send it down the wire I would 🙂 like Tom I dont have all the words but lots love and hugs 😎

Love Jo xx

[DebsParticipant]

Hi Dai,

Sorry meant to reply before but have been a bit caught up.

I'm really sorry you're suffering (even if in a macho way!). I'm on velcade too (with dex and cyclophos) and am currently just starting on cycle 4. I've had to have my dose reduced today as I've started to get slight pains (like shin splints) in my calves and more severe numbness in my toes. Nothing I can't manage (like you say – you see, us women can me macho too ;-))

But their comment to me was that sometimes the effects of velcade can be important so it is important that if you get side effects that you wouldn't want to be worse, that you reduce the dose or stop. I don't have bone damage or limitations at the moment, so am pretty lucky, and I think they started treatment with me on the basis that I would (hopefully) go back to leading a pain free life but with no pp's once I'd had a transplant. So if I got left with PN all my life, perhaps we'd question if we'd done the right thing.

Anyway, don't know if this helps or just sounds like a ramble (dex day??). But don't let the discomfort get too much…..sure it wouldn't be nice.

Good luck and hope things improve with the drug change 🙂

Debs xx

[DaiCroParticipant]

Tom, Jo and Debs,

Thank you for your support. It has been a strange day but I have reached the end of it without any further PN attacks, although my torso, ribs and sternum feel that Popeye has been going rumpeytumpetyrump ten to the dozen. :-S

I am following advice and increasing the Gabapentin and will monitor. I can only assume that the Velcade is in my body and hunting down the myeloma cells, where it caps them (I've seen the graphic) and leaves them to grow and explode. Apart from that I feel quite relaxed and very hungry… all of the time… and my taste buds have come back into their full glory for the first time in 18months… go, as our American friends might say, figure.:-/

Thanks again.:-)

Dai.

[brochoParticipant]

Hi Dai I am glad to hear you are feeling a little better , it is horrible when something like that makes you feel as if you are going backwards though ! When I was on Velcade I expected to feel great and have lods of energy on my week off! Wrong the weeek that was drug free was a complete wash-out, which got to be tolerable because I was expecting it Hopefully yours is just a blip love Bridget x

[DaiCroParticipant]

Hi Bridget, what a lovely morning (the night was good too, seeing as I have been awake for most of it) 😛 .

I think you may well be right about the 'week off' but that is really, really okay… because, as you quite rightly say, if I am expecting it then it will be tolerable, with coping mechanisms cut to suit. 🙂

I expect I'll get into the rhythm, taking two steps forward, followed by one step back, with Tom in the background somewhere shouting (in Ronnie Corbett's – Timothy – screen mother's voice) 'Onwards… Upwards….'. 😀

Dai.

[DebsParticipant]

Great to hear you're feeling better and on the up! I have to say I agree….I can cope so much better when I know what to expect. I wipe out the week off so that I can just chill out now. And then plan a nice meal out and a few drinks at the end of that week when I finally start to feel better 🙂 Red wine of course….oh and g&t to help with the cramps!!! lol!!

All worth it if those blasted figures keep coming down 🙂

Debs x

[PerkymiteParticipant]

Thats is the spirit Dai, just keep bl88dy well going.

Kindest regards – Vasbyte my friend vasbyte.

David

[tomParticipant]

Hi Dai

Well a whispered "Onwards and Upwards" and do you know I pressed the key pad real slow and quiet lol when I typed that he he.

Am Pleased you are feeling better albeit with a lack of sleep 🙁
Good Luck with it all.

Regards

Tom "Onwards and Upwards" 😎

[Author]

Posts