This topic contains 24 replies, has 19 voices, and was last updated by 
adamsp41 11 years, 6 months ago.
Hi all,
Colin has his appointment on Wednesday to find out his bmb results. Godwilling everything will be ok 🙂
They have sent him some leaflets to consider for maintenance, options are none, revlimid or revlimid with vorinostat. Assuming he gets randomised for either of the drug options, we have doubts what to do……obviously we want remission and for it to be as long as possible (for good preferably :-)), but the thought of Colin taking these drugs again with the side effects that made him feel rubbish last time, is not a good one. In essence he's still taking a lot of drugs for the original 'bad back', or so we thought ha ha, and is basically fed up of drugs.
I know it's Colin's decision and ill support him whatever, but do friends here have any thoughts:-)
Best to all …..and Tom hope you don't have a hangover after your celebrations!
Vicki and Colin x
Bump
hi Vicki
has colin been offered thalidomide as a maint drug I had that and was ok with it, it could suit him better than some of the others
good luck with the remission
Love Jo x
Hiya,
I would also ask about Thalidamide to see if it's an option..
All the best of luck..
Chelle xx
I was on revlimid which is the trade name for lenalidomide. This is a derivative of the thalidomide drug. It worked for me for about a year and then the light chain readings went up again. I'm on bendamustine now to get it back down and then goodness knows what for the future. Stem cell transplant always an option I suppose.
Good luck.
Scott
Hi Vicki and Colin,
I just wanted to wish you good luck for Wenesday. I can't help with the maintenance question as Phil does not have the option, it is not part of the PADIMAC trial. Phil is like Colin, fed up with all the drugs, so he is now looking forward to them slowly decreasing until, like Tom, he becomes drug free!! :-). Part of me does worry a bit that maybe some sort of maintenance would be better but it is Phil's choice and he is happy to have no maintenance.
Let us know how you get on.
Megan
Hi Vicki and colin
Well as you know I cant add to this post as I have only had CDT then SCT (i say only ?? lol)
But want to wish you good luck with whatever you Both Choose, and to let you both know we are all behind you to help you get through it and achieve the Remission that we all crave.
As for the "Hangover" I honestly dont know what one is to be fair I am pleased to say I cope pretty well with the drink Lol.
All the Best with it Love to you all
Tom Onwards and Upwards xxx
Hi Vicky and Colin
Slim was randermised for no treatment ,before he was unsure of taking it but we decided t wait and see what the computer came up with,no maintenance came up,ad at first we felt he was missing out,but it has worked out ok,we go every 2 months to see consultant mainly because the Myeoma no longer shows u n bloods or urine so it,s a bit f a bummer not knowing when it is back,at the moment Slim has a BMB every 6 months as this is the only way to find out what is going on in the bones,we are waiting for results right now,but blood and urine still get sent to trials.
Except for aches and pains Slim is healthy,he has a lot of bone damage which will never be the same as before,memory is shot to pieces,he has gone back to never having a cold.he does feel the cold,I keep a general eye on his health as I think this is we're it is likely to show first.
Remember if you go on the trial they will have a true picture ,of how many live longer with maintenance or not,plus the will keep a closer eye on you!!!. Your choice love Eve
Hi Vicki and Colin
Hope you are both keeping well:-)
As you know, my Mum is a little ahead of you in regards to treatment and was randomised in December for Revlimid and Vorinostat. I think she would have felt "cheated" to be randomised to no maintenance. I also think she would have been happier to have been given just Revlimid. Based on the fact that she had this as her frontline treatment and knows she can cope with the side effects. Vorinostat is another unknown entity. Anyhow, shes on her 3rd cycle now. The 1st month she was ok, but cycle 2 she developed itchy red spots(almost like bites) and it turns out she may be allergic to the Vorinostat. Shes to try again this month but to take Cetirizine to see if this helps the allergy. I dont know what will happen if she continues with the allergy? If she can continue with the trial on just Revlimid? I know that Babs on here has dropped the Vorinostat and is now just using Revlimid. We shall wait and see. It must be lovely to have no treatment at all, but as long as its tolerable Mum hopes she can continue with the maintenance.
Mum was admitted to hospital early hours Sat morning and is being treated for cellulitis in her arm (she has had the 2nd lot of chilhood immunisations and they think its a reaction to that?), its been a crap weekend for all:-(
Hope all goes well for Wed. Will you be told then what the next step is?
Love Ali xx
HI Vicky and Colin, thought I would drop in and say hi! and hope all goes well at your meeting this week about Colins treatment.
I am getting on fine, and pretty much back to 'normal', my hair is very short, but growing well now, and I am really busy at work and around the house. I still have a small dose of Oxycontin, and the doctors have started me on the weekend antibiotic this week, but apart from that, nothing.(other than Palindronate)
I was due to get the latest PP result last Friday, but they hadn't done the right blood test (grrrr), so I have to wait until next week now. I am hoping my reading will be well down. At the start of December it was 15 I think. I am hoping for some kind of remission, but trying not to think about it too much.
Glad to hear you are both doing well, take it easy,
Love from Chris and Lena xx
Hi Vicky and Colin,
I was randomised to both Revlimid and Vorinostat and took them for 1 and half months but was very unwell, even hospitalised with chest pains so I stopped taking them both, after seeing my local consultant he wanted me to remain on the Revlimid but had to check first if I could change after being randomised, he must have been given the ok because now I am currently only taking the Revlimid.
I am currently doing well and my last blood tests were at what my London consultant said was near NORMAL! HB 13.6, neutraphils 6.1 and platelets 218 and so I have been given my next appt with them for Feb 2014!!!
Ali,
Interesting you say about your mums childhood imunisations, I was told I would need these again then after SCT I asked and was told not needed!! Did your mum use her own cells or donor cells?
It never fails to amaze me how differently we can be advised and even how our myeloma is checked by different hospitals.
Also I too suffered itchy red spots on my face which were very sore and looked awful, I have not had them since being just on the revlimid.
Love to you all
Babs
(currently suffering horrible head cold which I am hoping to fight off myself with out need of antibiotics – week 2 now and feeling better so fingers crossed )
Hi all,
Thanks so much for your support. It's so good to know there are people out there who understand. Tom your a show off with the drink, I have one glass and start to swim, two don't go there and three are hangovers are us!
Ali, sorry to hear your mum has had a rough time, I often think of you all as she was our benchmark. I don't know what the next stage is and no one has mentioned immunisations….well see. Hope your mum is feeling better 🙂
Hey chris and Lena, great to hear from you and glad you are doing well, wondered what had happened and was about to put a call out!
Babs, thanks for the detailed response and thanks to you all for your advice :-). Keep everything crossed for us tomorrow 🙂
Vicki' and Colin xxxx
Good luck with the results tomorrow, hope all goes well. will be checking in again in a few days to see how you get on.
regards
Jacquie x
Hi,
I got randomised to Revlimid and Vorinostat at beginning of Jan. It was with some reluctance as I had felt great since my SCT on no medication, but decided that if it could prolong my life I'd got to go with it. Blood counts dropped slightly for the first 3 weeks but on week 4 (when ironically you dont take anything) I became neutropenic, came out in chickenpox like spots, developed a temp and was admitted for 2 days. They didn't seem to think it was a drug reaction but a viral infection (probably chickenpox) but having read other patients testaments I'm not so sure. It is very confusing as to whether you lose your immunity after an autograft SCT or not! Apart from the blood counts dropping I have had no other side effects though, in fact I had more on Thalidomide. I'm now into week 3 of my 2nd cycle so I'm holding my breath to see if I have the same problems in week 4 as the first time around. At the end of the day people react in different ways to different drugs so it's impossible to predict. All the best with whatever you decide.
Phil
Hi Phil
The randomisation was a bit weird, we had a chat with the trial team and they seemed to be gauging our thoughts before doing the randomisation. In the end we came to the conclusion that Colin didn't want to take it, who knows if that's the right decision or not, but only time will tell.
Good luck with yours though, by the way I get the impression it's normal for bloods to jump up and down a bit 🙂
Vicki and Colin x
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