Richard
Of course I remember you. Your picture of you with a very large red nose always brought a smile to my face!!! Is that red nose real or false!!
Sorry to hear you’re having to move to the next stage now. You have done fantastically well. I know of no one who has been on revlimid for as long as yourself- well done you.
I’m more of a watcher on the forum rather than a writer, so you prob don’t know me. It seems not many of the old names/faces are around. I hope it’s cos they have better things to do 😀
I wish you all the best with your next stage of treatment. I’m just about to start 6th line, but my fabulous team in Leeds have said really I’m at the point of palliative treatment now. But we are going to try Rev/farydyk/dex for a couple of months.
Where in Germany are you? My son lives in Berlin, grandchil(1st) due in 4 weeks. Don’t know if we or they can visit due to Covid restrictions. Fingers crossed.
Good luck and stay well to all.
Mike.
Hi Sue,
From what little I know. You have had an unusual treatment pathway and it’s not holding the myeloma in control.
Can I ask, if it’s not rude, and please don’t take offence. Is your consultant/team nhs or private?
I was right about my not having much time left on cc220 trial. It’s stopped now!! My paraproteins surprised them by going up again.
I knew so!! Anyway they have referred me to local palliative care team and I have an appointment with myeloma team in 2 weeks to discuss myeloma treatment or not, what’s available/on offer and off I will risk the side effects or just enjoy being chemical free.
Big decisions. They will let my wife into that appointment and it will be face to face. So let’s see what they will say.
I’ve had this for 9 exceptionally good years, so anything else a bonus. But I’ve a grandchild due (no 1) in 8 weeks, and we’ve decided to have a big (if Covid allows) party in summer to celebrate mine and wife’s 59 birthday and 19th wedding anniversary. And I’ve a couple of house conversions to do-
!! So lots to do and look forward too!!
Mike. Xxx
Hi Sue,
Yes I am still on the trial but only just. I think my consultants have twisted the Americans arms!!!
My paraproteins are rising v slowly, but worse than that was my back pain, the mri found a very large plasmacytoma to the right chest, eroding two ribs which is the site of pain.
The NHS has been fantastic. My consultant rang me out of hours to give me the result and the radiotherapist he had already spoken to agreed to single shot pan relieving radiotherapy, I was fitted in just before Xmas. Unfortunately the pain remains 😂
So Sue- what’s your story?? If you don’t mind giving me a summary.
Why do you think that dara isn’t working and why do you think Pom won’t work?
I think that I probably have 1 or 2 more cycles of cc220 trial, then two separate consultants have said we are looking at palliative treatments. I really would rather know.
Mike xx
Hi Jane
Sorry for the lateness in reply.
The side effects where extreme exhaustion and just feeling lousy, but it was only week one, the other 2 weeks on treatment and one week off treatment have since been fine.
My “new” problem now is sudden exacerbation of back pain in last few days. Luckily I see consultant tomorrow. It feels like cord compression I had a year ago which responded well to a couple of shots of radio. Hopefully they might be able to get me in for mri urgently.
I’ll keep you posted.
Mike
Hi
Thanks for your messages all.
I will keep you informed of the trial.
Take care all.
Mike.
Hi Sue
Thanks for replying.
Yep one day they will say, sorry Mike but we have nothing else to treat the myeloma. That would be ok if I feel terrible but, at the moment, apart from some side effects of muscle pain and weakness I’m really well.
Well this week- bad and good mews.
The pomolidamide has stopped controlling the myeloma.
The good news- a trial has just opened up in Leeds and I am eligible!!!! It’s a phase 2 trial on cc 220. Lots of test/bloods after tablets and bone marrows, but it’s tablets. Not too many side effects. Works well in 33% of people- so fingers crossed. If this hadn’t been available, they would have had to offer me some quite toxic old treatments.
I have one piece of advice. Because the giving of drugs is strict now, eg if you have a holiday of greater than 4 weeks from pomalidomide then that’s it!!!!! My advice now would be unless the side effects of anything your given are severe, keep taking it as long as you possibly can until it stops working, cos you won’t be offered it again under the strict rules of nice/nhs. I hope this helps you knowing this.
I will keep you posted re cc220 !!!
Take care.
Mike.
Hi Tom
Long time no hear from you on the forum. Are you ok?????
Well pp is up a bit more but the team want to squeeze a bit more from Pom , but they’ve increased the dex a bit and I’ll go see them face to face in 4weeks. I asked what’s next, the answer was not a lot!!!! All trials suspended at present. They would give me cyclophosphamide as a single agent. They would like to give with other stuff but the ?nhs ?nice pathway is strict. I guess they are telling me I’ve had my monies worth from them!!!
If anyone knows how this funding stuff works to be able to get more choice for what will be 6th line treatment I’d appreciate it.
I don’t feel like giving up!!
Mike.
Hi Joe
I’m so sorry that your Dad isn’t doing well.
He will be looking forward to going home very much, I’m sure. Also the NHS are fantastic at the care required in the last few weeks/days.
Just make sure you ask for help. Usually the GP or Macmillan nurse coordinates any help wanted/ required. And shout if you need more help from them.
I hope your journey is as smooth as possible.
Should you wish to text/talk to me, I’d be more than happy to. My number is 07852768027.
Kind regards
Mike.
Hi Joe
I’m so glad you got my message.
How’s your Dad doing? Hope he is out of hospital, home really is the best place to be, no doubt about it. Also re all this isolation, I would think that your dad having such a tough time, you can bend the rules!!! I am being strict and only for another 8 weeks. But— if my paraproteins go up again and I have to stop the pom, then I’m going to stop this shielding.
Does your dad talk to you about what he wants for when the time comes to stop treatment/ final months???? I’ve been able to talk that through with my wife but not been able to yet to talk it through with my son and daughter (30 and 28)
Keep strong Joe.
Mike.
Hi Joe,
I’ve had a lot of time on my hands with this Covid restrictions!!!
I’m sorry I haven’t seen your post earlier.
How are things going with your Dad??
I’m 57, had myeloma since 50, and am on pomolidamide. The docs have been pretty blunt about this being the final drug. But they did say they would try previous drugs I’ve had.
And also I believe NICE are meeting in November to talk about a new drug that works via a totally different mechanism, this will be for the likes of us!
And there are always the possibility of trials. ( but nothing at moment)
My loved ones are aware of the situation.
On the positive side—- I am pretty well on the pomolidamide
Hi Joe,
I’ve had a lot of time on my hands with this Covid restrictions!!!
I’m sorry I haven’t seen your post earlier.
How are things going with your Dad??
I’m 57, had myeloma since 50, and am on pomolidamide. The docs have been pretty blunt about this being the final drug. But they did say they would try previous drugs I’ve had.
And also I believe NICE are meeting in November to talk about a new drug that works via a totally different mechanism, this will be for the likes of us!
And there are always the possibility of trials. ( but nothing at moment)
My loved ones are aware of the situation.
On the positive side—- I am pretty well on the pomolidamide, just a bit tired and constipated ( normal side effects) and muscle pains ( unusual side effect but manageable as no option!!) , the pomolidamide is working well keeping my paraproteins down and I’m now at nine months on it (statistal mean 5months).
I hope that helps. I wish your dad (and family) all the best and fingers crossed.
Mike
Hi Paul,
I think you are absolutely correct. The cement is to relieve acute episodes of pain and has no effect on posture. I was also told that putting cement in to strengthen one vertebra will put more strain on the vertebra above and below- it makes sense!
I had my first vertebral collapse at diagnosis 7 years ago and now have 10.
My wife says my posture is much better- just with time. But I’m getting shorter! On average 1cm each vertebral collapse.
Hope this gives you some information.
Kind regards and keep as well as possible.
Mike
Hi Tony
A very warm welcome to you.
I was diagnosed age 50 with stage 3, very poorly initially, family told likely less than one year survival due to how poorly I was.
That was 7 years ago!
My journey has been up and down, good and not so good times. Lots of fractured vertebrae, a bit of neck surgery. More neck surgery planned, diagnosed with fractured sternum yesterday! And now in 5th relapse
BUT
The bad times get forgotten and I have had a great life in the last 7 years and hope for a good few more years still to come.
I’ve a wife and 2 older children 27,29. Who have been fantastic support along with other family and friends.
I’m retired from work and in the 7 years have fulfilled a lifetime ambition of renovating an old house and building a modern extension. Never would have done that if it hadn’t been for myeloma.
I am also looked after by the team at Leeds. This team are fantastic. The one downside is the clinic is busy! Expect a 2 hour wait, sometimes longer. Ask for first appointment slot if you want to reduce wait time. But, 2 hours to see what I think are probably one of Europe’s top myeloma clinics- not bad really.
I hope you get your pain controlled quickly. There used to be a pain doc in the clinic but I haven’t seen her face for some time now. Ask. Most gps are very good at pain control regimes.
I hope I see you in clinic some time. I’m not sure when I’m next there as it’s all changing cos of yesterday’s new problems.
Please feel free to ring or text/WhatsApp me on 07852 768027 if ever you wish too. I don’t go to the support groups myself but understand they are very good.
Good luck with your journey Tony.
Stay positive.
Enjoy your life.
Do all the things you may have put off. Create fantastic memories.
I truly believe myeloma will have a cure very, very soon. These are very exciting times.
Kind regards
Mike.
Hi Davina
I’ve just seen your post.
I’ve never heard of anyone as young as your son with myeloma.
The anxiety of not knowing what’s ahead I can be debilitating. Both for your son and yourself and I’m afraid I haven’t any bits of advice that could take this anxiety away. Talking does help especially with other myeloma patients.
I can only give you my summary. I was diagnosed 7 years ago age 50 following broken vertebrae. I had cdt then stem transplant. Was then drug free for 3 years, but each time I was due in clinic experienced the anxiety of thinking/expecting the worst.
Then I relapsed and have been on various regimes since then. But I’m currently on daratumumab and my paraprotein are steady. I feel very well but the only hiccup is I need a vertebrae fixing by an operation.
The treatment of myeloma has got so much better in even the last 7 years it’s untrue. The daratumumab is now licences for 1st relapse and again this is going to improve our quantity and quality of life immensely. Myeloma is now regarded by most people as a chronic illness that can be kept in check rather than a ‘hopeless’ diagnosis. The specialists also seem optimistic that myeloma May have a cure as a possibility.
My anxiety approaching each clinic day has lessened over the years, but it is still there. I do find that this forum is very helpful and also seeing and talking with others waiting in clinic is good. I’ve not been to an info open day but some people find these useful.
I’m rambling!
I do hope all goes well for your son and you.
Kind regards
Mike
Hi Cassidy and Frances
Cassidy- yep myeloma can often be considered more of a chronic illness ra
My diagnosis was 2012 and I’m probably as well now as at any time in the last 7 years. One thing you said- your elusive haematologist! That shouldn’t be the case. Create havoc!!
Frances- you having been on daratumumab gives me real hope, thank you for sharing that. Sorry that your pp’s have risen. Do you know what is next for you?? I presume your daratumumab was as a trial as the nhs only licenced it for fourth relapse myeloma from spring last year.
Hope all goes the well for everyone.
Mike
