This is just an update I promised From about a month ago.
My fith line of pomolidamide had come to an end (after 12months- a bit better than average).
Nothing else on offer so pretty despondent but hey presto, kicky me, this trial had just opened up and was recruiting from Leeds which is where I’m being seen. Screening process started, a bit touch and go with level of neutrophils but I was accepted and started on the tablets 5 days ago. Def worst side effects yet of any treatment but fingers crossed will settle soon. I understand the trial has reached its target 500 worldwide patients already and not recruiting more. This shows how lucky I’ve been but also how Covid has slowed down myeloma research/trials.
If side effects allow, I should find out if it’s slowing myeloma progression in the next couple of months. I’ll keep you all posted.
So pleased to hear that you were accepted on a trial Mike, and to hear that some trials are going ahead despite Covid. Here’s hoping it beats your myeloma back down into submission.
What have your side effects been so far?
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.
I’ve got an MRI scheduled for tomorrow. The pain I’d been having for months ‘disappeared’ by the time the appointment came through, so I’m feeling pretty fraudulent, but with this diagnosis I’ve decided to go ahead anyway. I hope your pain does the same, if not, that treatment is straightforward.
Hope you are well and had a good a Christmas as was possible.
Are you still on the cc220 trial? If so, how is it going ? I’ve been on Dara (4th line) which initially worked but now isn’t so wondering what is next. My consultant is offering Pomalidomide but I don’t hold out that much hope for it working. My alternatives will be finding a trial that i am eligible for. Think I am probably eligible for the CC220 if they are still recruiting or maybe a belantamab mafoditin (DREAMM-3 or DREAMM-6 trials). It all feels a bit worrying, partly due to Covid but also the lack of suitable options this far into treatment. Any info much appreciated.
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.
Thanks for replying. Glad you are still on the trial even if you’re para proteins are rising. Back pain is so awful so hopefully you can get some relief from that soon.
I was diagnosed after 18 months of increasingly bad back pain, many different GP and physio appointments and various scans. They were really looking for metastatic breast cancer as I had breast cancer in 2009 (some of us get all the luck!). Anyway eventually after an MRI, I was correctly diagnosed. This was Jan 2017. I had VTD induction and Auto SCT in Oct 2017. I had a good partial response but achieved complete remission in April 2018. Unfortunately this didn’t last, despite me travelling to India to source my own Revlimid as maintenance. I had relapsed by Aug 2018 and then the plan was for a donner transplant, even though this is high risk but was considered my best hope as my Myeloma was now considered aggressive. Neither of my sisters was a match and they started looking world wide, thinking i would definitely find a match. My light chains were going up steadily and in January 2019 I had DT-PACE in preparation for going ahead with the Allo transplant. However, they couldn’t find a match as I have a very rare tissue type, but I had 3 more cycles of DT-PACE to bring my levels down. It really was not fun! So much time in hospital plus I got neutropenic sepsis, lost my hair (3rd time) and bad side effects. I did meet some lovely people in hospital though. Anyway, managed to avoid further treatment until this year when I was supposed to be on a CAR-T trial at my local hospital, sounded promising but got delayed indefinitely because of Covid. So I started on Ninlaro in March which worked for a little bit, then I have just been on Dara for 10 weeks but levels are rising. So that’s where I’m at now – looking at 5th line treatment in 4 years.
I have seen my consultant today, there’s no definite plan, we are seeing what my latest bloods look like but there is no expectation that they will have improved. He had talked about Pomalidomde as a possibility but this is probably because it’s what the NHS can offer, I am not sure it’s what is best for me. We are looking at trials, maybe a CAR-T in London but obviously that’s probably not going to be an option with the Covid situation. There is a possibility of getting Belantanub Mafodotin on the compassionate usage scheme- could this be a possibility for you too?
It’s really difficult to be at this stage, there are so few options and no definite treatment pathways. My consultant always says every Myeloma patient is different but we also know there are only a few of us that make it this far. Do you ever go to the Myeloma info days? They weren’t on this year but I watched the Webinar version of the New horizons section- very uplifting about new treatments even for people on 6th, 7th 8th line!
Sorry for the really long reply – I have had steroids today and Dara.
Let’s hope for a positive 2021.
Keep me updated on how you are doing.
Jan 2021 – I thought I’d posted this but hadn’t! Definitely brain fog. Update with me, we are trying one more does of Dara, then looking at trials which may not be running due to Covid!
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!!
Just wondering how you are doing? Any possible treatments?
I’m under NHS care completely, so far been pretty good, only the Covid situation has caused me (and everyone else) problems. I’m trying to make a decision at the moment about what next, as the Daratumumab is no longer working at all and my light chains quite high. Possibilities are CAR-T trial in London or maybe another trial here (CC-220 that you had or Selinexor) or Pomalidomide as I haven’t had that. Really difficult choices, I just want something to work longer than a couple of months.
I really hope you get to have a big party in the summer for yours and your wife’s birthdays. I was also 59 a few weeks ago – I will be having a very big party for my 60th!
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