[PhilipandfionaParticipant]

Hi all
A few weeks ago we were told the paraprotein numbers were rising from zero, but not to worry. We hoped they’d go up slowly, or plateau. We were told they’d not restart treatment until it got up to about 10, as Philip had significant bone damage on diagnosis with a reading of 30.
In the last 4 weeks it’s gone from 3 to 9.4 so hello Revlimid in 2 weeks.
4 cycles and we hope that will knock it back ready for an allo.
Apparently getting remission is easy, sustaining it is harder. I can’t believe we’re already talking 2nd relapse only 26 months after initial diagnosis. I’m so sad he’s not had any break between treatments and is going through them so fast.

[duskParticipant]

Dear fiona

You have brought up ‘the elephant in the room’ with rt MM. I will rarely post because I find the optimistic stories of the few rather difficult in view of my own situation and experiences. Dealing with a disease for which treatments are mere guesswork and uncertainty is enough to cope with on a day to day basis.

I feel for you and Philip and greater numbers of MM who barely have a remission before their disease takes off again, you are not a minority- it is a disease whose twists and turns are just unpredictable. A few do very well – especially the much younger MM patients, many others not so well.

Being in remission and drug free is what we all want but i suspect few manage. But we must hang on in there.

 

[jeff605Participant]

Hi, Fiona, I feel I know where you are coming from, I’m on my third set of Drugs, had 8 weeks off to ” wait and see” after the 1st set, p/p started rising, so onto Velcade, that did nothing – well a very slight rise – now on Revlimid which up to now is working, p/p down to 6.5 ( that’s the lowest yet ) just living in hope this continues. I’ve now been 14 months on chemos, and would love a break.If this fails, what’s next, is my main concern. However my motto is one day at a time, and I know I have been really lucky with minimal side effects. We are really are in the hands of fate, so to speak, each of us battling our individual demons that Myeloma throws at us. As Dusk says, ” hang on in there “. Best wishes to you both, Jeff

[andygParticipant]

Hi Fiona.
I was diagnosed Oct 2011 with my PPs at 49 the lowest my PPs have been was 11.4 but not for very long.
Never been in remission and went through all the standard treatment in a few months none of them worked. Then went onto Revilimid which wasn’t widely available at the time and got 22 cycles of stability before that ended. I’m now on cycle 7 of Pomalidomide which is only available through the Cancer Drug Fund.
So I’d disagree with whoever told you remission is easy to get to. True complete remission is quite rare.
Like Philip I’ve not had a break from chemo. 34 months and counting if the mm doesn’t get me the drugs will! Everyone’s journey is different as is said time and time again.
Hope everything goes well and Philip gets his Allo. I couldn’t go for an Auto or Allo but that’s another long story.

Every day is a gift

Andy xx

• This reply was modified 9 years, 9 months ago by  andyg.

[PhilipandfionaParticipant]

Hi

I’m so sorry Andy, I meant remission for Philip seems easy, but it bounces back quickly for him. I appreciate the fact that it’s not even possible for some. I absolutely didn’t mean to imply that any of this is a walk in the park at all. I’m pleased for you that pomalidomide is available, that may be an option for us if we don’t go down the Allo route, but the doctor seems to be implying that if we don’t do it now, it’ll be too late when the revlimid stops working as it works better the earlier in the disease progression it is.

With all good wishes
Fiona

[andygParticipant]

Hi Fiona.
Seems as though I read something that wasn’t there. I’m sorry.
Why is the doctor pushing Philip along the Allo route isn’t an Auto SCT an option?
What was his last treatment? Was it Velcade because that in some cases works well at getting the paraproteins down but doesn’t keep them down for very long.
Which ever route Philip goes down I hope he gets a decent remission.

Every day is a gift

Andy xx

[PhilipandfionaParticipant]

Hi
CTD 4 cycles April – August 2012, auto SCT sept 2012. Relapse sept 2013 (on the 1yr anniversary!) velcade sept 13 – jan 14 with cyclo and dex thdn extended to maintenance just velcade fortnightly till now. Started relapsing April and risen from 2-9 in a few weeks.
His femur snapped in April 2012 which prompted the diagnosis when his level was 30 so they won’t let it get high enough to cause more damage.
As the auto failed after 12 months they won’t do another, so as velcade is failing we have to go to Revlimid, and as he relapses quickly we need to use the nuclear button now while he’s healthy enough to cope with it. We just can’t take the risk of running through rev quickly and having no other options.

[andygParticipant]

Wow Fiona.
Philip has been through the mill. Like you said in your original post he’s had no respite.
It’s strange how different levels of PPs cause problems. I read online of someone who gets problems when they go above 5!
I was put forward for an Allo unfortunately the only match they found wasn’t quite good enough. Luckily I got 22 cycles out of Revlimid or else who know what would of happened to me.
I hope Revlimid gets his PPs down and he gets to Allo quickly.

Every day is a gift.

Andy xx

[PhilipandfionaParticipant]

Wow! 5. That’s low. It all just shows how individual it all is.
Fingers crossed they find a cure one day.

[eveParticipant]

Hi Fiona

It does sound if Philip is high risk,they use this term when treatment works well,but starts up again as soon as treatment is finished,which does not give you much time free of treatment,

We all hope for remission,and not to be on pills all the time,all of this is a gamble at choosing the right drugs,as you know in Slims case it did not work,looking back you have to keep yourself well informed to know which way to go.

I also think having children plays a big part in your choices,as they have to live with the illness too..
I would get in touch with Jet as she has had her own cells plus a donor cells,worth finding out all the info you can,also Look at the blogs on Myeloma beacon Deb Bones is having some heavy treatment before SCT as she did not get much remission.it might guide you both on making an informed decision .

I just wish I had the knowledge a few years back,I think we would have chosen different things. Good luck Princess Fiona. Love Eve

[PhilipandfionaParticipant]

Thanks Eve
Jet has a good blog and manages the Allo page on Facebook. I’ll look at deb on the beacon, thanks, I’d not heard of her.
The kids are ok at the moment but I feel desperately sad for them.

[eveParticipant]

Hi Fiona

Children never say much,and I personally think we do not give them enough credit as often they know what is going on,but do not want to upset mum and dad.

Matty,my grandchild died two years ago and his sister is still going through therapy,it’s not an unmentionable subject,but both siblings have problems on a day to. Day basis.

Looking back on are experience we should have sought a second opinion,I do not know if the results would have been different,we will never know.
I think you should take into consideration the statics Slim has come in the 4/5 year rage,we are 3 1/2 years down the line,he is now on palliative care.
The Myeloma is only 10 percent it’s the damage along the way that has resulted to his situation.

I hope this is helpful to you,and gives you some knowledge and strength for the future ,as Andy says every day is a gift,unwrap it. Love Eve

[PhilipandfionaParticipant]

Hi Eve

you are always helpful, whether you’re replying directly to me or others.

We’ve been very lucky. As Philip had his SCT at the Marsden, we had the benefit of Prof Morgan’s input into his treatement. When we had the velcade, he was the one who said don’t go for the allo as soon as it’s in remission, but stay on velcade as long as possible, and then go to revlimid. he seems to be a big fan of revlimid and was very proud of the fact that some patients of his have been on it for 6+ years.
The docotr in Brighton then said, yes, there are some on it for 6 years, but they’re the tip of hte iceberg. the rest have gone. Mind you he also put us in touch with a lady who’d had an allo. She was one of 3 he knew of who’d all had one at the same time, and she was the only one we could talk to as the others had also gone.
We found with 2 competing opinions, we told the doctors to discuss it between themselves and agree something and the present us with a plan. i’m not interested in playing one off against the other, i want both minds working FOR us for the best agreed plan.
We’ve got a meeting with the brighton doctor on Thursday, and will then be seeing the Marsden shortly after, I hope to get their view. Thankfully, they are happy to collaborate.
My son is 9 and gets worried when dad has to go to hospital, so we warn him in advance, but day to day he sees daddy is ok, so he is fine. We are assured by his teachers that he’s a happy go lucky soul at school.
my daughter’s 12 and knows the name myeloma and that it’s a cancer. she’s more aware, and we talk to her more. she’s had some difficulties at school, and we’re not sure how much is caused by being 12, starting secondary school, and getting hormones and how much is this, but we have a good relationship with her. we go walk the dog, and she rants, and we hug, and then get on with things. her rants are mainly school related, but if that changes, hopefully she can still rant to me.
we’ve never hidden this from them, but try not to make it a big deal either. it’s going to affect their childhoods anyway, we just want to preserve what innocence we can until we can’t.

[eveParticipant]

Fiona

You have had one of the best experts in Prof Morgan,Slim had Faith Davies,but sadly both going to America in July!!

Just sent an E Mail to Sharon thanking the unit for all there support.

Andy was on Revilimid for 22 cycles ,Slim only got 4 cycles as it knocks bloods to nothing,but Andy is the better one to consult.

I think the difference with the Marsden they tweek treatments,for example Slim was given platelets if they fell below 30 were local hospital it was only 10,plus cyclophosphamide was only taken if nuets were above a curtain level and always after blood test !!!

[avantrompParticipant]

Hallo Fiona
Just to give you my experience so far. I have been on Revlimid for 4.5 years and no sign yet of new MM activity. I wonder how long this can last. At any rate this is my first treatment so hopefully I shall have others to fall back on. Decisions, decisions !!!. Good luck.
Annette

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