[MinParticipant]

Hi Everyone,
Peter got his Revlamid at clinic today. along with dreaded dex. But only ten tablets for 4 days this time,Revlemid is taken for 21 days then 7 days off all meds so he is very pleased about that.
Bit frightening to learn that his blood test from two weeks ago came out at 8750(light chains) I thought that amount would kill you. But we were reassured to hear that some people poodle along at 6000 and do very well. Phew… I [u]think[/u] the figure would maybe the equivalent of 8.5 in pararotein levels but don't quote me on that, unless you know better and I will be happy to hear the official version
For those of you who have been on Thalidomide you will be familiar with the very expensive packaging it comes in.
Revlamid is packaged like a box of Paracetamol and looks sort of cheap. By comparison to Thalidomide.
On the plus side no more travelling to the day unit twice a week and being tied up with waiting for blood results and pharmacy to get it ready. Other plus is being similar to Thalidomide it should knock him out when taken last thing at night, regardless of dex. So here we go third time lucky. Will keep you posted on his progress. For those who are new he was on velcade and it started off good then stopped. But the Dr thought it was most likely a response to Dex rather than velcade.
Both of us have been on a real downer since learning that velcade did not work. But was quite cheered to learn that sometimes your body learns to live in synergy with the mm provided it does not damage organs.Needed to hear that as figures have always seemed to be very important
Min

[GayeParticipant]

Dear Min – I am glad Peter starts his Revlimid today and I wish him good luck with it. I found it very tolerable and was able to live a near normal life with it although it did make me very tired which I caved in to rather than fight it. Good luck with sexy dexy!

I laughed when you thought that Revlimid packaging looked cheap compared to Thalidomide. The packaging may not be up to much but the cost is extortionate. For a year's supply you are looking at over £40,000. Never mind the quality feel the width!

Anyway it's onwards and upwards time. Go for it!
Love, Gaye xx

[zasrsParticipant]

Hi Min

gordon did really well on rivlamid ( b….dex) for two years, very little in the way of side effects (b…..dex)!

we have a packet here at home i agree very cheap packaging i dread to think how much it is worth.

best wishes sarah xx

[GillParticipant]

Good luck to Peter with the revlamid hope he does very well on it and good luck to you with Peter taking the dex. Stephen is on a rest week (no bloody dex thank goodness!!!)

Gill xx

PS like the new hair colour on your photo but not sure about the lolling tongue:-)

[brochoParticipant]

Hi Min hope Peter does well on Revlimid and will be watching out for your posts as I start mine in a couple of weeks too It would be nice if they only send me to sleep at night my little power naps are taking over my days as it is so if Revlimid makes me any more dozy I might not even manage to drink a cuppa!! Lucky Peter I am going to be on 20 dex for 4 days a cycle and am hoping this can be reduced afterwards For some time now my doctors dont even mention my pp levels except to say they are low , as they dont have much bearing on how active my myeloma is at all The down side of this another bone marrow biopsy very soon yuk!! It was a bit of a hassle getting the prescription filled today as my consent forms had gone astray , poor Jeff had to run around the hospital trying to get it sorted bless him!! As for the packaging I do think they should wrap it in pretty bows or something given the cost !!Love your new pic who is it? Love to you both Bridget x

[MinParticipant]

Well first things first, peter slept well until 4-30am when he woke up with violent diar—-trots. cant spell it! Then he got up to go to work, only does 3 hours but has not been feeling up to up for 5 days now . At 8am he crawled back into bed having just taken a sicky tablet as he wanted to throw up. Altogether not a good start. He is sleeping now and will see how he goes. We were told the 1st month could be difficult. mmmmm
As for the lolling tongue, That is Benjamin, my oldest dog who has been suffering with old age and is now becoming friskier. He is my very best friend and I can tell him all my secrets and know for sure he will not tell anyone! When I am down he makes me happy. I am down now because of this bloody sciatica, and peters new problems. Knew this would happen as Family want me to make decisions on how to celebrate 60th birthday and 40th wedding anniversary. I don't want to make plans and don't want to disappoint so stuck between a rock and a hard place.
Miserably
Min

[zasrsParticipant]

Dear Min

Thoughts and hugs, not too sure about the lolling tongue! Keep taking the meds.:-(

luv sarah

[MinParticipant]

Thanks Sarah,
My son came round today and did something sort of remarkable. 1st of all he made me lie on the floor, then he taught me a Pilates exercise for my back and leg pain. and it worked. so far so good. All of a sudden I was transported to that moment when your children start to give you advise. Not that he is a child at 34yr old. But the fact that I took his advise and it worked made me think…I must be getting old.
So is Gordon not still taking Revlamid as maintenance? Peter was told he would be on it forever until it stopped working.
Min

[jmsmythParticipant]

Hi Min

Sorry that Peter is feeling so poorly and hope he starts to feel better soon. Really glad to hear that the dreaded sciatica has gone. Well done your son!! I know what you mean about making plans – I really hope that all goes well and you will be able to celebrate. 60 and 40 years married. Congratulations.

Love Jean xx

[brochoParticipant]

Hi Min sorry to hear Peter hasnt had a good start to his treatment , fingers crossed tomorrow will be better. I hope your sciatica is gone for good , I had it many years ago and it is terrible love Bridget x

[KeithH17Participant]

Hi Min,I hope Peter's Revlimid does the trick for him.
As for Sciatica…I have that as well as MM and had a really bad time with it 17mths ago.
MRI showed 4 bulging discs with one in particlar just above my hipbone ruptured.
I had an injection and then physio and an organised exercise plan over a period of 6,weeks.
The pain has gone but the nerve is now damaged after being trapped for 12,weeks and I'm left with a perminent numbness down the outside of my left leg.
There is an operation you can have and had the pain continued as it was then I would have had it but I can live with the numbness for now.

Take care Min and best of luck to you both.

Keith.

[BADGERParticipant]

Hello Min

Sorry Peter is not feeling so well I hope things get better soon, Benjamin looks lovely i Bet he is missing his walks if your leg is so bad I hope it clears up soon mine lasted for eight weeks I know what agony you are in have you thought of accupuncture it really helped me. I do hope you can get your party I am sure it will be ok something to look forward to. I know what you mean about children telling you what to do my daughters are always doing it roles reversed or what. 😎

Love Jo x

[MinParticipant]

You were right. He is back to 'normal' whatever that is. Sleeping better and dexing as normal. >:-( last day tomorrow. Eating me out of house and home. (Never put any weight on while on velcade and dex) but never had any munchies with it either.
The sciatica is getting better having used a Tens machine… Could get addicted to that.>:-)
Thanks folks will keep you posted how it progresses… I mean the Revlamid not the sciatica!
Min

[brochoParticipant]

Dear Min I was pleased to see on another post that Peter is feeling a bit better this week , long may it continue Yesterday was my first dose and it wasnt a great day ,I just felt yuk all day and very lethargic What surprised me was I didnt get a rush of energy from the 40mg of dex at all , I had hoped it would override any tiredness from the revlimid .Forgive me but I have forgotten if Peter had extra pains initially? I had various joint and back pains that were new and it certainly wasnt a restful night , but hopefully that will ease up soon . How is your sciatica now? I hope its a better , the pain from that is every bit as awful as any myeloma pain love to you both Bridget x

[MinParticipant]

Hi Bridget
Pete rwas feeling absolutly dreadful the first week of Revlamid, throwing up runs, pains and tiredness. But it did allow him to sleep better.
He is now 14days in and he feels better but still tired. He has some problems with his kidneys but following a briliant clinic visit today, we saw a new Dr from Germany, who has worked in the USA for two years.
He made it clear that as Peter,s remission was only 5months another SCT will likely the same so he needs to consider a sibling transplant if he responds well to Revlamid.
It was very enlghtening in many ways and although he had bloods and urine done and there no results yet, just felt so much more posative and informed than previously. Confirmed the need to need to keep taking Aciclavir, will increase his dosage of Dex for next lot,and doing more tests for protein loss in kidneys. All in all brilliant consultation.
I went back to work yesterday still have backache but no leg ache, but had to get up to speed on what is happening with my redundancy. Curiosity got the better of me.
Peter is planning on going back next Monday aslong as he continues to feel well enough.
Hang on in there as he was warned that the 1st month would be the worst.
luv Min

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