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Helen 8 years, 9 months ago.
Ok, so, 4 years ago today I was given the myeloma diagnosis.
Revlimid followed by SCT and Revlimid maintenance.
sflc’s started to come back after a few months, low and slow initially but rising October 12. Stopped Revlimid in March 13,1st relapse.
Velcade May to November, relapsing again March 14.
High dose steroids May to July – not effective, light chains are bouncing back at a higher level each time. All my 3 sisters are tested for Allo compatibility- none are.
Adopt watch and wait- see if Pomalidomide is available on CDF.
I want to be off treatment if I can for my daughter’s wedding in December. Not to be!
Start Pomalidomide at end of October.
Now completed 3 cycles and it is working, hurrah, SFLC have dropped from 900 to 141.
Today my genetic results are back, not good, poor prognosis, best future option might be unrelated donor Allo graft while I am fit, if there is a match and the Pomalidomide is working well.
So, here is the question, who out there has had an Allo graft when they were 60? And how are they now?
What questions should I be asking?
And I do apologise for not responding much on the site recently! Wedding and new treatment seemed to be more onerous than expected!
However tonight is a dex night so will be awake for hours!
Love Helen
Hi Helen.
Tuesday is my DEX night too though sometimes I do get to sleep.
I’ve found Pomalidomide to be kind to me though I guess everything is relative so I’ll quantify it a bit. I’ve found Pomalidomide to be a lot kinder to me than Revlamid, Cyclophosomide and Dex.
I have just started cycle fifteen of Pomalidomide, Gideon Osborne must love me, and fortunately it is still working so the Bendamustine can be kept in the cupboard for now.
How was the wedding I hope it was a great day and the weather was kind for you all.
I tested for an Allo as you know. No siblings matchup and only one match on the donor lists and he turned out not to be a close enough match. I have read that there is a 90% mat rate.
GVHD is the big problem with Allo transplants though I have read a little of it is good for a long remission.
Just had a thought, unusual for me lol, couldn’t you go down the autosct followed by a mini Allo route? Providing they find your stored stem cells.
Not sure what questions to ask other than how rejection of donor cells is tackled. I know it’s an area that is improving all the time. I’m sure I was told PPs levels or however they monitor is not  important because your marrow will be ” cleaned” out to be replaced with a clean donor marrow.
Are they planning on keeping you on Pomalidomide till it fails before you go down the SCT route?
I hope everything thing goes well.
The next time you see professor Jackson remind him I’m still waiting for an appointment to see if a SCT may a realistic chance for me lol.
Every day is a gift.
Love Andy xx
Hi Andy
It was a lovely day- went by very quickly – the pair had a great day and never stopped smiling, weather was good and we all walked to church and reception. I’m a bit bored now without it to help organise.
Pomalidomide isn’t too bad – I’m surprisingly well apart from the chest infection, dreaded gut problems, slightly sore feet and tiredness, all manageable with minimal grumbling!
I shall ask about auto/Allo… I do dread the thought of it again as I took about a year to get over the first one but will wait and see if there is a match, then decide. It does seem like a life line might be being thrown…I just have to catch it! I remain optimistic. The plan is to do Allo, if a match, while Pomalidomide is working and disease burden is low as possible ..so later this year perhaps. If no match I stay on it until it stops working.
I will relay your message to prof! And must start booking holidays again!
Love Helen
Hi Helen.
I find it hard to fill my day. Somethings I can only do for short periods of time due to my back problems. I get bored sometimes though at the end of the day I wonder how it passed so fast with me achieving so little.
When the prof. suggested the Allo route it seemed like it was the final roll of the dice to us. I know you had a bad time after your SCT but does that mean you’ll have the same problems again? or is it the fear it may be as bad the overwhelming thought? I’ve read that recovery from Allo is milder than an Auto though as with everything myeloma nothing can be guaranteed. My view on SCT’s if you can get some remission and stay drug free it will buy time whilst newer better drugs become available.
I am doing well on Pomalidomide and my quality of life is good. I had a good year last and I’m hoping this year will be similar. I have the usual Dex problems and errr movement difficulties but other than that I’m fine.
Make sure you get your travel bags back into use. We are looking at booking a holiday in the UK in spring not sure where yet because our usual trip to the lakes is not possible this spring due to the B&B owner of where we always stay going on holiday! The cheek LOL. So we are using it as an excuse to go somewhere different.
Right is it time for a nap or should I get up and do err something? Decisions decisions.
Every day is a gift.
Love Andy xx
Keep your chins up guys. Remind me is allo the donor transplant and auto the own cells sct?
No one has mentioned the auto one to Colin just the poss of a second own cells sct if we can get to remission and they can get the cells out.
As was well documented had real problems last time! Only just got the two million and they had to throw the kitchen sink at it to get that!
We must get some holidays in too!,
Vicki and Colin
Ps colin is on prednisolone steroids with the bendamustine and the steroids seem much kinder on the sleep stakes
Hi Helen
Good to hear from you again and to hear wedding went so well. Do try and find something else to look forward to!
Good luck with all your deliberating. I do hope that, like for Andy, they are able to pull something out of the bag for you. Aren’t there ant trials coming up for relapsed patients?
Love and best wishes.
Mavis xxx
Hi Vicki.
You’re right. Allo is donor cells and auto own cells.
How’s Colin getting on with the Bendamustine?
Get some trips planned.
Every day is a gift.
Andy xx
Hello Mavis good to see you popping in, how are you doing? There are no trials going on here for people with relapsed/refractory myeloma, it was mentioned that if there is no matched donor, they would look for a trial and I might have to travel to London etc to take part,well its a case of ‘whatever it takes’ and we wait and see.
Andy – if they have found my stored cells I will ask how they plan to proceed, auto then Allo might be too much since the last time was horrid ,I don’t know what the plan will be, I suppose I’m trying not to think about it too much until I have to! The mortality stakes are a bit scary and now that I’ve clocked up 60, I’m in the dodgy age group!
We aren’t booking a holiday yet, we decided to move and buy a holiday cottage, so that’s a bit of a project I’m really looking forward too, only hope I can manage a paintbrush and not just be the tea lady!
Take care all
Love Helen
Hi Helen
You look lovely and glad you enjoyed the wedding.
Ian has relapsed/refractory on revlimid. To date he has had CTD, one year’s remission. Velcade, 3 cycles and relapsed. Revlimid, 7 cycles. FLC are now 695, and we have an appointment to discuss SCT but I am afraid that he will have to have DTPACE and will be weak going for a SCT. If he doesn’t go down this route it will be pomalidomide and what if that doesn’t work?
We have just returned from a week in Playa Blanca, Lanzarote which was the first holiday abroad we have had since Ian was daignosed in October 2012 and we really enjoyed it. Ian will be 59 in March and he has come a long way, now walking much better and looking well. I am now in panic mode.
Let me know if you decide to have another SCT.
Love Maureen x
Hi Maureen
We had a lovely day thanks. Ian isn’t having much luck with these drugs at the minute, when do they plan to start dtpace? I’m finding the Pomalidomide unpleasant but bearable … Igo tomorrow to see what the bloods are like… So fingers crossed it’s still working!
Love Helen
Hi Helen
Ian hasn’t had much luck but consultant doesn’t want to add cyclophosamide to his treatment.
We are going to Glasgow tomorrow to speak about SCT and DTPACE’ I will let you know how it goes.
He hasn’t had Pomalidomide but consultant wants to leave that for last.
Hope your bloods are ok and treatment still working
Love Maureen
Hi Helen.
I’m having a Dex morning! A new one for me. So I’m nosing around on here to see how things are progressing.
So now the wedding is out the way the move is back on. The grass doesn’t have chance to grow under your feet! Have you somewhere in mind to move to? Have you already mentioned it and my chemobrain has forgotten it? lol
A holiday home too. That sounds a great idea might even suggest something like that to Steph since we’re creatures of habit going to regular places. Have you somewhere in mind? Though I’m determined to keep our Greece trips going as long as medically possible. Are you planning on buying a holiday cottage outright or a share in one? Hope I’m not being too nosey 😉
Ok back to things medical. I’ve still not heard from the Professor I guess I’m not on his radar yet. Though my consultant says she’s pestering him. I see what she says when I se her in April.
London is a long way to travel for a trial! I thought Nottingham was going to be a trek when the Prof. mentioned trials to me in 2012. How were your last bloods?
Wowzer it’s 9am already guess I’d better get moving drugs to take, breakfast to eat and believe it or not dinner to prepare. Thankfully I’ve got plenty of anti sickness drugs lol.
Hope everything is ok.
Every day is a gift.
Love Andy xxx
Hi Andy
I’ve been having a few of those dex mornings myself recently! Have been up around 6 am half of this week! But not this weekend, I’ve felt quite grim really, I can’t work out if the Pomalidomide is cumulative in its toxicity or I’m just sickening for something else… No doubt time will tell. Anyway the drugs seem to be relatively ok and I’m able to do most of what I want, though they do make me feel weary.
Yes wedding is now in the past, they seem quite happy… Just had them round for lunch today, they went off to the pub quiz about an hour ago, I declined that offer!
As for moving… We are doing this all the wrong way round but it feels like time is of the essence at the minute so the holiday house is in the throes of purchase; it’s just an hour away so if there are problems we can get back home quick. We can rent it out easily too as its in a touristy place in Northumberland. I also have a large family who are looking forward to ‘borrowing’ it. We do need to downsize our house though …or we can’t afford to live! but we had planned to replace a few windows this year and they were ordered before holiday cottages were even thought of! All very complicated… But they are delayed until April so can’t sell here until summer.
We are going to Italy mid April – north Tuscany and I’ve a fancy to go to Greece again too if I can !
I’m back to the clinic on Tuesday ..this is where they tell me if there is a donor match, I still don’t really want to think about it. My last bloods were better, light chains down to 144, neuts 1.7 so better than they have been for over 4 years. They were 0.3 in November, so maybe the Pomalidomide will last a while. I don’t relish travelling for drug trials but I will if I have to as that might be the only way to extend life, if this transplant option isn’t available. That sounds terrifying, I do apologise to anyone who is upset by my post!
Are you planning to go to the info day? I’ve forgotten when it is, but will go if possible.
Keep up the good work with the cooking… That’s my task too!
Love Helen
Hi Helen
You certainly keep yourself busy with the wedding and now a holiday cottage, together with a house move. I’m exhausted just thinking about all of the work involved! At least the holidays should be relaxing.
That’s great news about Pomalidomide working for you, with your light chains reducing well and your neuts looking a lot healthier. There appears to be quite a few new drugs in the pipeline, but it takes ages for them to go through clinical trials and then seek approval. Hopefully, Pomalidomide will work a long time for you before you have to start looking for other treatments.
Love
Jan
Hi Jan
I’m hoping so too, I have to speak to the transplant team again to see what they think, there are new drugs coming along but you are right , they take a very long time to get into common usage.
The moving and everything is an effort to have a bolt hole if I can’t go far away, and to find something much smaller in town. Though these things never seem to dovetail together properly! I do like to have a project on the go! And there is a limit to how much knitwear ones relatives can politely accept! This way I can paint the windows and scrub floors to keep myself entertained if I feel like it. Our retirement plan had always been to do up a wreck, though the house we have seen only needs decorating in the short term. Anyway we will see how we get on.
How are you doing, I presume your light chains are behaving?
Love Helen
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