Squirrel

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Viewing 15 posts - 1 through 15 (of 32 total)
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  • #149654

    squirrel
    Participant

    Hi Rafael
    The information given above was very much the same for me except I had a tandem transplant.
    SCT Oct 2023 and Jan 2024.
    The reason being I have ultra high risk strain of myeloma.
    The first transplant I managed to get an infection and was a bit more unwell due to it but hospital realized very quickly and extra medications given. The result meant I stayed in hospital a bit longer.
    On the second transplant I caught COVID for the first time and again it was quickly dealt with.
    What I am trying to say is the care you receive going through these transplants is second to none.
    I unfortunately didn’t get the remission hoped for but it is impossible to know that before treatment.
    The treatment takes a lot out of you but at the end of the day I believe it’s necessary.
    We all know the alternative!
    Hope it all goes well for you.
    Take care and be kind to yourself.
    Wishing you all the best.

    #149624

    squirrel
    Participant

    Hi Rabbit
    Do you know the standard lines of treatment?
    I had first line lenalidomide and now on second line carfilxomib with cyclophosphamide and not lenalidomide.
    Told second line recommendations had changed to this.
    Where can you find this information please?

    • This reply was modified 4 months, 1 week ago by  squirrel.
    #149622

    squirrel
    Participant

    With regard to the change to cyclophosphamide instead of lenalidomide the Consultant said was due to recent recommendations.
    I tolerated lenalidomide very well.
    In fact I would say I sailed through.
    My light bands have increased and I think they want to hit it hard.

    #149620

    squirrel
    Participant

    Hi
    I have had 2 stem cells transplants. First in October and the last one end of January.
    Remission wasn’t long for me and according to my consultant they always hope for about 18 months but she was very disappointed that wasn’t achieved.
    I am about to start on Carfilxomib this week.
    Along side this I was to have lenalidomide but this was changed this week to cyclophosphamide instead due to recommendations.
    Would love to know if anyone else about to start treatment has also been told this.
    Hate the idea of going back to chemo again and the side effects along side it.
    I have felt so well for the last 3 months and really thought I was in a good place.
    Just goes to show how silent this disease is.

    #149053

    squirrel
    Participant

    @sheldan71 @lottie
    Hi to both of you.
    My experience has been very much the same as Linda.
    The only difference was I had tandem transplants Oct 2023 and Jan 2024.
    I also take Aspirin.
    I am also now on lenalidomide maintenance since April 2024.
    I personally do not feel as well as I did but making the most of life as best as I can.
    We all try to be as positive as we can.
    I do avoid crowded situations because of suppressed immunity but that is up to individuals.
    I also have an understanding with Grandchildren and their parents that they do not visit with any coughs or colds.
    You need to do what is right for you though.
    Hope all goes well and continues to go well for you both.

    #148878

    squirrel
    Participant

    @rabbit
    I was very interested reading your reply about your eyesight as I have also been struggling with mine.
    What symptoms did you have please?
    Thinking I might need my eyes checked too.

    #148877

    squirrel
    Participant

    @gc
    I am also high risk MM diagnosed in March 2023. I am 65.
    I have had 2 SCT’s Oct 2023 & Jan 2024. Also not a complete remission.
    I started on maintenance programme 3 weeks ago although slightly different to you.
    Lenalidomide 3 weeks on 1 week off which is where I am now.
    Zometa I have been told every 8 weeks. That is it for me.
    Re Vaccinations in a year I have been told.
    Thank you for asking this question as it will also help me going forward – hoping you get some informative replies.
    I always believe the sun shining helps.

    #148869

    squirrel
    Participant

    @peterb16
    Totally agree with everything Rabbit has written.
    I have just completed all of this including a tandem stem cell transplant which was recommended due to the strain of Myeloma I have.
    I have just started the maintenance treatment with fingers crossed for a good remission time.
    Wishing you all the best

    #148507

    squirrel
    Participant

    @spk2021

    Hi again
    I see in one of your other posts that you are being treated in Royal Bournemouth hospital.
    I am being treated in Southampton General hospital.
    Best wishes

    Sandra
    Squirrel

    #148506

    squirrel
    Participant

    @spk2021

    Hi SPK

    You are right about information overload and I feel that there is so much that I still don’t understand.
    Every so often the fear gets to me too.
    I also believe that a lot of people write on here when they are at their worse but there are quite a few positives here too.
    You say that you have 3 high risk markers but I don’t even know if I have more than one. The only one I know about is the (t4-t14) chromosome and of 1q by FISH which was why it was classed as UHR and I only found that out by chance on a clinic letter sent to my GP. My Consultant also doesn’t believe in the UHR classification.
    I believe there is so much information to take in on Myeloma that the Consultants try to give as much as they feel you need to know at each stage of treatment. Maybe because as they say MM is so individual.
    SCT didn’t go as well as expected and I managed to get an infection while in hospital so I had to stay an extra 7 days. It took a lot out of me but I am very lucky to have a wonderful husband who has helped me tremendously.
    Again though, others have found the SCT very easy going – some even going back to work. It is 8 weeks since my SCT and only now have I started to feel a bit more like myself.
    I start chemo cycles again at the end of next week and I am also booked in for the second SCT due mid January which my Consultant said is recommended for UHR Myeloma although others have said their Consultants don’t agree.
    I hope this helps you.

    Best wishes

    Sandra
    Squirrel

    #148320

    squirrel
    Participant

    @zozo0921
    Hi
    I personally found it quite difficult as I was already on painkillers before my myeloma was diagnosed so I felt reasonably ok before but the treatment made me feel worse. Whereas your Dad is already feeling a bit better due to his pain now being managed.
    My advice while going through the treatment is enjoy all your good days as much as you can do hopefully it will put the not so good days into the background.
    Keep asking about anything you are unsure of – there is so much to take in. A lot of it still confuses me even now.
    I found asking questions on here has been very useful for me.
    You haven’t said how old your Dad is
    I was diagnosed in April this year and 64.

    #148317

    squirrel
    Participant

    @zozo0921
    Pleased to hear you now have a treatment plan for your Dad and he is a bit brighter.
    I also had DVTD – 4 cycles and have my first SCT scheduled for next week.
    Wishing you all the best for the planned treatment.

    #148306

    squirrel
    Participant

    @jmorris
    I had exactly the same red rash mark from Velcade.
    The next week it would be injected on the other side and the same thing would occur.
    The red mark changed quite quickly and faded into a dark mark. I was told some people bruised.
    I think it’s quite common.
    Hope this helps.

    #148304

    squirrel
    Participant

    @rebeccaR
    What a lovely reply to Rabbit.
    I am awaiting final consultation before being put forward for a tandem stem cell transplant due to the fact my MM has been classed as Ultra High Risk.t(4.14) + 1q.
    I believe my Consultant has already pencilled me in for 9th October.
    Reading your reply has given me hope that I may also be that one that can DO this.
    I hope you have many more years post sct.
    You are an inspiration – Thank you.

    Squirrel

    #148296

    squirrel
    Participant

    Hi zozo0921
    So sorry to hear your Dad has been diagnosed with myeloma.
    I know when I was first diagnosed everything seemed very sereal and somewhat still does now.
    Mulberry’s reply above is correct in that your Dad should feel some relief as he undergoes a treatment plan although some side effects for some people aren’t very nice.
    Hope he gets his MRI soon to move forward with treatment.
    All the best. X

Viewing 15 posts - 1 through 15 (of 32 total)