MummyMo

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  • #147315

    mummymo
    Participant

    I’m so sorry to hear about the relaps Zainab. It must have been such a blow. I’m in the process of preparing for SC harvest and although my bloods are good I’m waiting for results of bone marrow biopsy and have a CT scan booked for next week. I am praying that the news is good. I will be off the trial after the harvest as I’m not planning to go ahead with transplant until it’s absolutely necessary. I really hope they come up with an optimistic treatment plan for you. Sending strength and hope to you Zainab. Stay strong and make the most of every day. I hope you are feeling well and managing to stay positive.
    Kindest blessings
    Mo

    #147266

    mummymo
    Participant

    Hi All, well I had my last subcutaneous chemo injection yesterday and will have my bone marrow biopsy on the 5th December but if my paraproteins are anyth8ng to go by the chemo mix has worked well. Down from 17 to 4 as of last week, great news. My stem cell harvest is on the 12/13th December. I have decided to hold off on the transplant, which would have been in January. I have made radical changes to my diet, my home life, my exercise and my mental state and just want a chance to see if I can keep the Myeloma at bay with these changes. Apart from the fatigue on steroid drop off days I am feeling amazingly well and very positive that this is 5he right route for me at this t8me. The harvest and storage of my cells whilst they are at such a low Myeloma level gives me an insurance policy should I need it down the line as they can keep them for an indefinite amount of time. We will see what happens. Looking forward to getting my brain and energy levels back. With regard to steroid drop off, my doctor also halved the dose and I tried sloping off by taking 10 tabs on the morning of chemo injection, then three the next day and two the third. It worked much better as you don’t fall off a cliff on day three! My haematology doctor was happy for me to continue this for the remainder of the cycles, it really helped. I highly recommend finding yourself a good acupuncture practitioner. I use a Five Element practitioner and it has received my symptoms enormously and kept my liver, spleen and gall bladder talking to each other and all systems in harmony. I literally go in feeling knackered and skip out full of energy. I’m hopeful about the future and feel positively charged with hope. Good lick to you all.

    #147070

    mummymo
    Participant

    Hi Zainab, I’m just finishing the lenalidomide on my first round and it hasn’t been too bad. Fatigue and tiredness some days but I’m managing to carry out most things I want/need to do. I’m interested to see how I feel this week without the chemo drugs. I hope you are continuing to cope well.
    Kindest blessings
    Mo

    #146767

    mummymo
    Participant

    Hi Zainab, I was also diagnosed in June this year and have been offered a place on the RADAR trial. I’m 59 years old, otherwise disgustingly healthy and this diagnosis came as a terrible shock. I have low levels of myeloma cells in the blood (10%)and one suspected lesión on the rib which can’t be biopsies as the position makes the procedure tricky. I am struggling with the need to have treatment at all if I’m totally honest, but have come to the conclusion that, if I’m to accept treatment at all, I am better off with the closer scrutiny and newer drug combination that RADAR offers. I have never been on any medication before and this regime does seem to be using a sledgehammer to crack a nut but the standard treatment is no kinder. I’m just really struggling with the idea of being so brutal with the body that has served me so well up until now. Feels like a betrayal and just find it hard to believe there isn’t a Way to help healing without tying the body down and beating the hell out of it. I’ve signed up for the trial and am due to start treatment in two weeks …. but I certainly wouldn’t say I was utterly convinced. I think we are very early participants and it didn’t make me feel any easier that my trial nurse really doesn’t seem too knowledgable and that even my Consultant didn’t have the answer to some questions …. Made me feel a bit like a pharmaceutical company’s guinea pig. Was your experience better? Did they seem to know their stuff? More questions than answers I’m afraid! Please let me know what you decide and the reasons for your decision. Bless you on your onward journey
    Mo

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