[andygParticipant]

Hi everyone.

Just thought I’d let you know I’ve started my 25th cycle of Pomalidomide and Dexamethasone. It’s my steriod day yippee.

Every day is a gift.

Andy xxx

Ps. As promised a short post lol

[HelenParticipant]

Hi Andy
I’m back from Austria – very nice, beautiful, clean pretty chocolate boxy villages and gorgeous Salzburg, did some walks in the snow and the Christmas markets. Quite festive, but very cold -7 at night and -4 during the day.
Good to see you recovering well, got all your Christmas shopping done yet? I haven’t – clueless as to what to get!
I’ve just finished cycle 14 on the pomalidomide, but it’s the dex night and I am feeling wide awake and queasy from them! Im hoping the tablets work soon.
Love Helen

• This reply was modified 8 years, 11 months ago by  Helen.

[petesilverParticipant]

Hello Andy

That is some number of cycles, it looks as if I have run out out other options and have just started cycle 1 on Pom/Dex so I hope it works as well for me.

Diagnosed in 2004 have survived on various regimes of Velcade,Revlimid, Bendamustine and the horrible Dex which seems to have a mind of its own.

wish me well (EDIAG)

Peter

[andygParticipant]

Hi Helen,

Sounds like you had a great time in Austria and it sounds like my type of place. We missed our Belgium Christmas markets trip this year so that’s three breaks away my pneumonia put paid too!

I try to do my Christmas shopping online with the aid of alcohol I hate shopping. Just got my credit card statement it’s eye watering. I blame the Dex effect. I should stay away from Amazon on Dex days lol.

Hi Peter,

It is quite a few cycles but I’m hoping for lots more. Strange you were given Bendamustine before Pomalidomide or was that before Pomalidomide was available. I was diagnosed October 2011 and have been through most of the regimes when Pomalidomide stops working I’m pretty much at the end of the list. I’ll probably have to go back to some of the older and harsher drugs Bendamustine has been mentioned as has Melphalan.

I hope you get a good response with the Pom Dex regime. It seems to be a marmite type of drug side effects wise hopefully you’ll be okay with it. It’s all about buying time till NICE approve the next wonder drug we’re five or six drugs behind what the USA have available.

Every day is a gift.

Andy xxx

 

 

[cartdawParticipant]

Hya andy glad you seem to be doing ok. I’m 3 months after SCT my bloods due after Xmas so fingers x. Feel well though I must say. X.  Dawn

[andygParticipant]

Hiya Dawn.

Great news that your feeling well I would guess that’s a good indication that things are going well. I hope you get a great late Christmas present and go into the New Year and start a long drug free period.

Every day is a gift.

Andy xxx

[VickiParticipant]

Hello All

Its Vicki Heselton here, Colin’s wife.I just wanted to post in to say that I am so glad you are all doing ok. I think of you all very regularly even though I don’t post here now much. I am trying to make effort in other ways by raising funds to support Myeloma Uk and have a fund raising ball scheduled for April 2016.

I am so glad to hear you recovered well from your pneumonia (sorry if I spelt it wrong) Andy and Helen you seem to be travelling about a bit which is great. Peter I do hope the latest round of drugs work well for you and lets hope that drugs fund keeps going!!

Wishing you all the very best of health and happiness over this christmas period.

Vicki xx

[petesilverParticipant]

 

Hello Andy & Vicki

It looks as if it pom is working to well, as my bloods are all over the place, Had to have a BT last Thursday so feeling a little better they were tested yesterday and have greatly improved but now seem to have a bout thrush.

I think all along it was his plan to try bendamustine first but as it did not improve things and pom was being taken off the CF it was the right time to start, but only time will tell, finished cycle 1, will see him on tuesday when I know he will delay cycle 2 for another 2 weeks, so fingers cross all will be ok,

All the best to everyone for Christmas

Peter

[petesilverParticipant]

Happy new year all,

Looks like my bloods have recovered to start cycle 2 of pom, but he’s has cut the dex in half , the only side effect I was getting was bad night sweats, strange with most users it seems to keep them awake but I don’t to be getting that problem yet, in fact it makes me quite tired. Still only time will till the further down the line

[annlynnParticipant]

good luck peter with new treatment hope it sorts you out for the new year happy new year to one and all thinking. of all who are newly diagnosed those who are approaching sct and those of us enjoying a break from it all best wishes. xxx ann lynne

[andygParticipant]

Hi Vicki.

I really hope things are starting to get better for you. I can’t imagine how hard it’s been for you. My heart breaks a little more every time I read of an online friend passing. I applaud you for your fundraising though my personal thought is maybe you should take a break from the myeloma world and concentrate on a bit of “me” time.

I wish you and yours all the best for 2016 .

Every day is a gift.

Andy xxx

[andygParticipant]

Hi Peter.

Glad your medic was on the ball and switched you to Pomalidomide before it was deemed to expensive for us meer mortals that rely on the NHS. I hope 2016 sees you and Pomalidomide building a good relationship.

Every day is a gift.

Andy.

[petesilverParticipant]

Thank you everyone for all your support,

Yes Andy my consultant is really switch on, he has now been treating me for 11 years, its not always a easy ride as you know but I always feel he does the best for me. i’m afraid I am one of those that ask many complicated question i just put my trust in him, he always explains when things are going good or bad and what we we are going to try this time, so I can’t complain after 11 years.

All the best    Peter

[avrilro55Participant]

Another shrort Post. First of all Happy and hopefully healthy New Year to you all. I wonder if sso eone can answer this question. It is exactly two years since i was diagnosed with MM had 4 weeks radio therapy every day for a single plasmacytoma, then just 4 months of CDT. No medication at all since June 2014 and do not see consultant til we come back from holiday end of March. I still have bone transfusions every 4-6 weeks. My light chains are 298 and all other bloods good. My question is when do they usually put you on second round of treatment. fYI i not having SCT…. Any info appreciated.

[petesilverParticipant]

Hello Avril

It really is worrying when there is a lack of feedback, perhaps you should try and see the myeloma nurse most haematology dept  have one and normally you should know who it is. I have a phone no of mine who I can contact if I have any problems or queries.

[Author]

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