[DaiCroParticipant]

I started my Revlimid and Dexamethasone regime two weeks ago. The first thing the treatment had to do was to damp down some very painful new disease in my shoulder that has dominated my daily life… it seems to be working… slowly but surely.:-)

I attended the hospital today for a bloods review with my specialist nurse… specifically to check my white blood cells, my platelets and my neutrofils… all of which can be badly affected by the Rev & Dex combo.

I have been feeling so down with my shoulder condition that I was half expecting bad news… hopefully at worse a reduction in my prescription… the alternative didn't bear thinking about (but I did).:-P It was also my once weekly 'Dex' day… so I was already feeling hyper-low.

All readings excellent… as good as, and in some cases better, than on January 9th when I was announced officially relapsed. Whoo, as they say, Hoo!:-D

Okay, let's get some perspective… this is only two weeks in… but it was such an important measurement for me. It indicates that Rev and Dex are working (literally) without affecting my blood vitals, which augurs well for the longer term… which means I have a good chance of establishing a relatively long term relationship with the treatment.8-)

One more week of Rev, then a weeks rest, followed by a consult and Cycle 2.

I am hopeful, grateful, relieved and ready to continue with life.:-)

Watch this space.;-)

Dai.

[brochoParticipant]

Hi Dai I am so pleased for you It is such a boost when test results are good and as you said now you know Rev and Dex are getting on with the business of getting the beast back in its lair!! I hope it gets rid of your shoulder pain quickly , no wonder you were feeling down pain like that is so unrelenting Heres to the future Dai its looking good love Bridget x

[andygParticipant]

Hi Dai
Good to hear your test results are good. Long may they stay that way and your painful shoulder disappears. Well the pain disappears not your shoulder 😉 there's nothing worse than a constant nagging pain.
Here's to a pain free future
All the best
Andy

[DaiCroParticipant]

Hi Bridget & Andy,

My shoulder is improving daily, so I am assuming that the Rev is doing its work. Now the the sharp pain has gone I have been left with a dull ache that pulls if I stretch out and up – so I try not to.;-)

Yesterday was a real boost… very, very early days but the indication is that I am tolerating the treatment with no adverse trends in my bloods… and that, if it continues, is all I need to make a good relationship with my drugs. If all goes well I could be looking at up to 30 monthly cycles or so. Even if it is shorter (20+ Cycles) then Carfilzomib may well be on offer… and that is an 18 month treatment that actively knocks mm backwards… allowing Rev (if still holding its own) to extend its benefits along with and beyond Carfilzomib… so there is hope and it all depends on taking to my current treatment.8-) 🙂

Dai.

[OutdoorsPaulParticipant]

Dai
Just scanning through posts and its good to see your early indications are that the meds are working.
enjoy the spring weather
cheers Paul

[DaiCroParticipant]

Thanks Paul,

As always I'll keep in touch with progression for those that follow behind… and that list has grown an awful lot in the past three years.:-D Unfortunately.:-(

Dai.

[tomParticipant]

Now Dai
Am I the one that said "If anyone can do it you can" Good Lord am I pleased I am correct way to go Dai you are nearly up and running 😀 .

As you say the list has grown a lot that hang on to your Tail and follow you. I know you will keep strong and have the mental being to go as far as it needs.

From One "Onwards and Upwards" To Another "Onwards and Upwards" xx

Tom 😎

[PerkymiteParticipant]

Keep going Dai, I am right BEHIND you 🙂

Kindest regards – Vasbyte

David

[DaiCroParticipant]

Thank you Tom & David… it's good to know that you are behind me and I hope it stays that way for all of us for a good while to come.:-)

My shoulder is easing each day… I'd say it is about 70% better than at its worst point last week. Continual pain is wearing, it drains you physically and mentally… but knowing that the pain has settled from a constant into a gripe if I stretch.. well, it's good.

It is also good news because it means that the Revlimid is doing its job… I have noticed that my ribs don't feel so tender either… three more days and then a rest week from Revlimid and I am feeling better with each passing day, so let's hope for the same sort of bloods readings a week on Monday and then onto Cycle 2.

[b]Onwards and Upwards[/b] and [b]Vasbyting[/b] negative thoughts whilst remaining determined to do [b]'Whatever It Takes'.[/b]

Dai. (Chirpier than I have been for several weeks).8-) 🙂

[BADGERParticipant]

Hello Dia keep being chirpy:-) 😀 😎

so glad the rev and dex seem to be working perhaps this will be the ones for you:-) so many people for who Velcade didnt work seem to get on well with this regime I do hope your readings stay good and you shoulder stops hurting you are in my prayers
Love Jo x

[tomParticipant]

Now thats the way to go dai 😀

I know and you know that we are all behind each other 😎 we have (unfortunately) got a great gang all rallying for each other, and that for me Dai is a great thing 😀 .

Am Pleased you are 70% better. I know what you say you can have too much pain and if its only now and then we learn to live with it but the constant Pain is a Pain (no pun intended) 😉

Keep up the great work Dai and do [b]'Whatever It Takes'[/b]and dont forget to keep on [b]Vasbyting[/b] to help you stay [b]Onwards and Upwards[/b]

Tom Happier now our Dai is "Chirpier than he has been for several weeks" and "Onwards and Upwards"

[StuartParticipant]

Hi Dai
sounds very much like you are coping fine with Revlimid. My wifes experience was quite similar, and in fact looking back we realise the worst part was the dex. In her case it took five months to reduce her pp level to "undetectable". She is now on month twenty four; now at a reduced dose Rev, and aside from needing to monitor blood counts carefully life has achieved some normality. I hope you continue to improve and that our experience gives you good reason to be hopeful and optimistic.
Best Wishes
Stuart

[mhnevillParticipant]

Hi Dai

Like everyone else I am delighted that the Rev and Dex are doing the trick. Long may it last. So glad the pain is already coming under control – that will make life so much better. You sound much more like your old self.

Very best wishes and prayers.

Mavis.

[andygParticipant]

Hi Dai

It's good to hear your pain is easing. Hopefully it'll soon be gone completely. There's nothing worse than constant nagging pain. We've all got our personal battles going on but if we stay strong and positive we will improve.

Wishing you pain free

Andy

[eveParticipant]

Hi Dai

Sorry i have missed your post.Rearly good to hear new treatment is working,and you have some releave from the pain.

Finding i cannot keep up with the post,think its because as things improved with Slim,my middle of the night,being wide awake has faded and now sleeping well myself,
It is lovely to hear the old Dai back again,Love Eve

[Author]

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