[DaiCroParticipant]

Regardless of my 3rd 'P' results 'Onyx', the manufacturers of Carfilzomib and the perpetrators of the 'Aspire' trial, have closed the doors on new trialists… I missed out by a week or so.

If either of my first 2 urine test had proven positive then there was a 50/50 chance of me making the magic worldwide 700.

Its ironic but I am not yet 'ill' enough for the myeloma to show a presence in my urine (one of the qualifiers for trialists – only needing a reading of 0.5%). So its Revlimid and Dexamethasone only for me (Carfilzomib would have been the 3rd medication). Revlimid once a day for 3 weeks, followed by a week's rest each cycle (20 Dex once a week throughout).

Carfilzomib seems to be a really good 'knock back' drug and I would have been more than happy with the twice weekly, hour long infusions, 3 weeks per cycle for 18 months… but it was not meant to be.

The positives are that Revlimid is tablet based with only monthly check-ups… so relative freedom from the hospital and the absence of myeloma in my 'P' means that it hasn't taken a strong hold yet… giving Rev & Dex the chance to get the better of it.

Ho hum… :-S 🙂

Dai.

[brochoParticipant]

Hi Dai what a bugger!! Rev and Dex have proved to get good results though and as you say the other advantage is freedom from hospital visits. I hope it does the trick but at least if you do need further treatment Carfilzomib would be an option and may be more readily available love Bridget x

[HelenParticipant]

Disappointing for you Dai, but hope the rev and dex works for you, love Helen

[tomParticipant]

Hi Dai
What a devil that is am sorry to hear that, wonder how Ill you need to be before ur "P" starts to show MM :-/ anyway Dai whatever they throw at you am sure you will cope with it and the bloody side effects.

Tom "Onwards and Upwards"

[BADGERParticipant]

Dia
i am so glad you can be positive about the drugs you it might not be so bad to have revlimid treatment I know a lady in my support group who has had revlimid for nearly four years on a low dose now tablets every other day and no steriods at the moment thalidomide and velcade were not any good for her she says that there have not really been any side effects and at least its only once a month clinic visits
Big ((((hug)))
love jo x

[DaiCroParticipant]

Hi all,

Thank you very much for your supportive replies.:-)

I have to take the Revlimid tablets one per night for three weeks, folowed by a rest week… then repeat, hopefully for many, many cycles.

The dex (20 tablet, once per week continuously – they only seem to do one size) I took yesterday morning making Tuesdays 'dexdays'.:-S

Imagine it will take a good while to suss out what the side effects of the Revlimid will be, fatigue seems to be the most reported, but the dex held no surprises, being my third time in its company.;-)

I took my first Rev on Monday evening, followed by the dex next morning and so far dex is winning. Yes I feel fatigued but that has been the norm for a while during this relapse. The dex managed to wake me after a coupe of hours sleep and kept me awake for a couple of hours until I gave Janet a nudge and I did a complete change of nightwear with a double towel placed on my sheet, my jimjams felt as if they had just come out of the washing machine.:-P

The sweats, coupled with a feeling of something coursing through my body, plus sleeplessness seems to be my norm with dex… luckily for me it has never really shown itself as dexitude… so watch this space.

I hope I can take to the Rev… my consultant says that most that do settle down into a comfortable relationship with the drug after the first 3 cycles… I do hope so and will be visualising a good relationship with my friend 'The Rev.':-)

This morning has found me with far less 'sweats' and little to no 'coursing'.. so if that is what to expect each week I will cope with that. Will report more as I find it.:-)

Dai.

[adamsp41Participant]

Hi Dai…I take "The Rev" as part of the X1 trial and have had to come off 25mg…down to 10mg and now am on 5mg as it kept knocking my blood results for six …I do not take anything else(except Bonefos)and the main side effect is as you say general fatigue….hope your treatment settles down and the side effects become easier to deal with …stay safe…Phil 🙂

[DaiCroParticipant]

Thanks Phil,

Yes, I have to back in two weeks for blood tests to watch my white cell count and my neutrofils. My specialist nurse will check the results and recommend any alterations… obviously I am hoping to stay on the highest dose possible if I can.

What else to you take with the Rev? Is the trial your frontline treatment or further down the line?
Regards

Dai.:-)

[tomParticipant]

Hi Dai

Well its so good so far 😀 and as for the general fatigue.. well I get that and as you know am on Nowt, so am putting it down to "Old Age" well for me that is Lol.

Keep it all going we are all with you 😎

Tom "Onwards and Upwards"

[eveParticipant]

Hi Dai

When I read you had missed out on trials,I put off replying as it just did not seem enough to say how sorry I felt for you,it just seemed so unfair,but hey! some times life is not fair,and by the sound of it you have picked yourself up and hey ho! on to the next treatment.
You cannot keep a good man down:-)

At least with the night sweats you can sympathise with us women.LOL
One of my better buys for Slim has been an electric blanket that has dual controls,so I do not have to be to hot,and he can go hot and cold,choice between blanket or fan.seems to work.

look after yourself.Love Eve

[mhnevillParticipant]

Hi Dai

I realise how gutted you must feel for not getting on the Trial. Yhere have been some good reports of Revlamid as a maintenance drug. I do hope that you are surprised at how well you do on this regime. Eventually, if you need it, maybe the Carfilzomid will be available all tested and dose adjusted.

Hope those PP levels remain very low and that you generally begin to feel more like it!

Very best wishes.

Mavis x

[Author]

Posts