sueharley

Forum Replies Created

Viewing 12 posts - 1 through 12 (of 12 total)
  • Author
    Posts
  • #141936

    sueharley
    Participant

    Hi Mike,

    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!

    Sue

    #141935

    sueharley
    Participant

    Hi,

    I have had my first dose of Astra Zeneca, 2nd dose is today. Had no side effects from the first dose so not sure what that means, I think I would have felt like it had done something if I had felt some effect. I am hoping to get my blood tested for anti bodies next week, which would reassure me if I did have some (although not having any apparently doesn’t mean it hasn’t worked). I am currently on Daratumumab and Dex.

    Sue

    #141705

    sueharley
    Participant

    Hi Mike,

    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.

    Sue

    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!

    #141691

    sueharley
    Participant

    Hi Mike,

    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.

    Sue

    #141483

    sueharley
    Participant

    Thanks Mulberry,

    I am so glad you are in remission, it’s good to hear positive outcomes. I have emailed Nirav and hopefully this will be a possible route for me.

    It was quite an adventure going to India when I went in 2018 but I’m glad there are easier ways of obtaining the drugs we need now. I am lucky to have a very supportive consultant at a large UK hospital, he is very used to me being determined to do whatever I can to increase my chances of survival. He will be happy to monitor me and continue to advise. Despite being on 4th line treatment, I am determined to keep trying until I find something that works for me longer term.

    Thank you for your helpful and prompt reply.

    Sue

    #141480

    sueharley
    Participant

    Hi,

    I started this original post some time ago when I was researching Lenalidomide as a maintenance treatment following SCT.

    I know many of you have now gone down this route and hopefully this has been successful.

    For me, the maintenance didn’t work and I am now on 4th line treatment with Daratumumab as a monotherapy. I find myself again in a situation where I would benefit from treatment that NICE have not agreed to fund. In this case it is to add Dexamethasone (very very cheap generic steroid) to the regime as my consultant believes this will approve the effect of the Daratumumab. He is not able to prescribe this for me even if though I am happy to pay for it, although I would be allowed to have it if I was to also pay for the Daratumumab, which is approx £60000 for a few months I believe.

    I am not in a position to return to India and Covid would also prevent this. It seems that I can get Decmax (dexamethasone) shipped from India but I don’t have a prescription currently and so this is what I now need.

    Mulberry, you have mentioned getting a prescription for lenalidomide from an Indian doctor without having to visit India and I was thinking this was a route I could use for the Dexamethasone. Could you send me some details please.

    Any other suggestions would also be welcome.

    I’m not sure if I could see a heamatologist privately in the UK and get the prescription or if this would mean the NHS could not provide the Daratumumab. It does seem to be a ridiculous situation when I am requiring a generic drug that is very inexpensive.

    Thanks everyone, hope all are well as possible.

    Sue

    #141448

    sueharley
    Participant

    Hi,

    I absolutely agree that it is worth trying Revlimed as maintenance if you are able to source it, either privately in the UK, or from a reputable supply from India. I had the Natco produced version of lenalidomide that I originally went to India to obtain.

    I was just like to say that we can all get very focused on getting the treatment (Revlimed or something else) that we believe and hope will extend our time in remission and ultimately our life expectancy. However, it is useful to remember that this may not be the answer for your Myeloma and can lead to disappointment. I had a maintenance dose for only a few months before I relapsed so, unfortunately, it did not work for me and the news of the relapse was actually worst than my initial diagnosis. I felt that I had done everything to gives myself the best chance, I was relatively young, fit and healthy (apart from the Myeloma!) and had achieved a complete response following my SCT.

    I really hope it is successful for any of you that are going down this path but try and maintain a level of caution.

    Good news is that I’m still here, about to start 4th line treatment and still feel fit and well.

    Sue

    #141398

    sueharley
    Participant

    Hi Mike,

    Your post gives me hope! I am about to start 4th line treatment but I’m getting through them very fast (less than 4 years since diagnosis) and I am dreading the day they day there is nothing else to try. It’s very annoying that all the trials are on hold as there was due to be several C-ART trails that you might have been eligible for. Have you had Darzalex already? Although normally 4th line I did see a post where someone had managed to get it 5th line. What about Selinexor? Is this still only available on trials? I’m sure you have already checked out all the possibilities. Please update on how you are getting on. I hope you get some options.

    Sue

    #141390

    sueharley
    Participant

    Hi Everyone,

    I am possibly about to start on Daratumumab as a 4th line treatment after my light chains are rising steadily after 5 months of Ixazomib (Ninlaro), Lenalidomide (Revlimed), Dex combination. I was diagnosed in Jan 2017, had VTD conditioning before Auto SCT in Sept 2017. I did achieve a complete remission, although not at day 100, and then had self funded Revlimed (which I travelled to India to get) for a few months before relapsing in Aug 2018. I was told I was not eligible for a 2nd auto SCT as I had relapsed so quickly and my Myeloma now counted as aggressive. I was persuaded that an allo SCT was my best chance of survival, having previously been told they were hardly ever done due to the high risks involved, and we started looking for a donor. Neither of my sisters was a match. I had 4 cycles of DT-PACE as preparation for the allo SCT but was then told I had a very rare tissue type and it was unlikely that I would find a donor match. I did go into remission following the DT-PACE but by Dec 2019 my levels had risen to the point of needing to start treatemnt again. The possibility of a C-ART trial was then mentioned and this was due to start in March 2020. I was eligible for the trial so we held of treatment hoping to last until the trial start date. However, the trial was initially just deleyed until May 2020 so I started on the Ixazomib regime, but with no expectation from my consultant that it would give me very long. Since then the C-ART trial has not happened at all due to Covid 19 and I am now relapsing.

    The suggestion now is to start on Daratumumab but as a mono not a triple because that is all the NHS is allowed to do under NICE guidelines. By going on Daratumumab I would definitely be excluded from the C-ART trial if it is to be up and running in the future as the trial was a randomised comparison of C-ART compared with the triple Daratumumab treatment. I am therefore not sure if to hold back on the Daratumumab in the hope of the trial but I have been told that I will not be able to have Daratumumab as 5th line treatment as it is only available for 2nd line (in the triple) and 4th line (mono). However, I am not sure that this is quite what the NICE guidlines say as it seems to say that there is no protocol for 5th line and that this is why it’s recommended for 4th line. Has anybody been on Daratumumab as 5th line?

    I have also been told I wont be eligible for the trial because I will have had too many lines of treatment but this didn’t seem as definite. It feels like they are giving up on me as I am getting through the options so fast. I am still relatively young (58). fit and healthy, no kidney problems and tolerate all treatments so far really well.

    Anyone got any thought on my situation? Really sorry for the long post.

    In summary, anyone had Daratumumab as 5th line or later when not part of a trial?

    Thanks

    #138242

    sueharley
    Participant

    Thanks for the reply Rebecca. I may try and get a second opinion at one of the hospitals that are running the AUTO2 trial (CAR t ). I am at the QE in Birmingham and I know that my consultant is already considered an expert in Myeloma but I also think it can’t hurt to get another professional opinion. I will also post on the US site, just to see what experience people have had of the Allo SCT or CAR T, although I think CAR T is only at trial stage everywhere so there are no long term results. I think I am still not really believing the blood results as I feel really well, just been on holiday climbing mountains!

    #138154

    sueharley
    Participant

    Hi Brian,

    I did go to India and have approx 8 months supply of Lenalidomide. It was all very straightforward in the end, although the process of organising it was quite stressful. I had a medical visa although the Indian hospital thought I could have travelled on a tourist visa as well. The main problem I had was getting travel insurance as most exclude travelling for the purpose of medical care. I have my bloods monitored monthly and so far everything is going well. I am not sure whether it will be possible to have the next lot shipped to me here when I run out – the Indian hospital are willing to do this but I haven’t been able to work out what happens this end in terms of importing medication. Hope this is helpful to you.

    Sue

    #137412

    sueharley
    Participant

    Hi Sara,

    Revlimid (Lenalidomide) is not available on NHS as a maintenance chemo in England,  although I think it is possible to get it on relapse. Was your mum was part of the Myeloma XI trial? If patients received Revlimid as part of the trial I believe they are entitled to have it funded by the NHS for maintenance. Also the rules in Wales and Scotland are slightly different and Revlimid can be used for first line treatment for some patients. At what stage is your mum in her treatment? Obviously it would be very interesting if different hospitals are interpreting the NICE guidelines in different ways.

     

    Sue

     

     

Viewing 12 posts - 1 through 12 (of 12 total)