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    WNMyeloma posted an update

    January 10, 2020
    Multiple myeloma patient Bob Munro (pictured below) explains what it’s like to live with the rare blood cancer and how his diagnosis led him on the journey of a lifetime – cycling from London to the Arc de Triomphe.

    To describe yourself as lucky when you’ve been diagnosed as having a rare incurable bone marrow cancer could easily qualify you for a visit from the men in white coats, but then what’s another couple of white coats when you’ve been surrounded by them for more than seven years?

    It certainly wasn’t my first reaction when the consultant treating me for pneumonia told me I had a tumour. “You mean cancer?” I interrupted, sensing that this wasn’t a word he wanted to use. “Yes, it’s in your bone marrow and it’s called myeloma”, which it turns out 97% of people, including me, have never heard of. I’ve had better news.​

    As I dabbed away tears, I managed to take on board ‘rare, incurable, treatable, new drugs, great strides’ but the fact that it was in my bones strongly suggested to me that I was in big trouble. Surely once a cancer has migrated to your bones, you were finished? And his coup de grace “oh, and I strongly advise you not to Google it”, meaning you didn’t need to be Sherlock Holmes to know it wasn’t good.

    It was no wonder he gave me that earnest but useless piece of advice; 25% of newly diagnosed patients die within the first year and only 46% live for five years. But, and here’s where I start to get lucky, my cup is resolutely half full. Some would say I’m foolishly optimistic.

    Google also told me the average age at diagnosis is 69, and less than 35% of patients are under 65. I was 52 and still playing five-a-side football; surely youth and fitness must improve my chances of being in the 46%? It does, so does not having an aggressive strain.

    What is multiple myeloma?
    Myeloma crowds out the production of red and white blood cells in the bone marrow, leaving sufferers anaemic and with seriously compromised immune systems– hence my raging pneumonia and immediate blood transfusions. It also attacks bones, often resulting in catastrophic collapsed vertebra, and destroys the kidneys. My excessive tiredness –”Stop yawning Dad” – and stubborn infections, suggested I’d had myeloma for a couple of years, but I had neither serious vertebra or kidney damage. This could have been so different if I hadn’t recklessly gone skiing with what felt like flu and developed pneumonia, leading to a diagnosis which could otherwise have been delayed years. Oh yes, that was lucky.

    “I’m living (cycling) proof of the strides being made in the development of myeloma drugs”

    Didn’t he say there had been new drugs developed recently and it was treatable? Yes, and 20 years ago there was virtually nothing available. Since my diagnosis there have been an incredible number of new Myeloma treatments, the most for any cancer, so you could say I was lucky… you get the picture. Which is one of the reasons I’m such a, sometimes unfashionably, huge fan of Big Pharma, I literally wouldn’t be alive without it.

    My treatment journey
    Now, in case you’re thinking this is a rather flippant recollection, coloured by successful treatment to a state of complete remission, think again. The first day’s treatment, a cocktail of 40+ chemotherapy tablets including the notorious, and previously banned thalidomide, left me hospitalised again for three weeks.
    After four months of treatment my response was ‘sub-optimal’ i.e: ‘it didn’t work’. It also left me blind in one eye as the blood thinners I self-injected every day sent blood gushing through my retina. “That was unlucky” said my Ophthalmist. I didn’t see it coming either.

    The second treatment also failed to dent the myeloma and left me with permanent numbness in my feet. My consultant then suggested we “smash your myeloma” with two doses of a rather nasty cocktail of six chemotherapy drugs at once. Apart from losing my hair, I felt relatively unscathed, unfortunately so did the myeloma, in fact my biomarkers went up.

    The aim had been to lower these biomarkers sufficiently to undergo a stem cell transplant – a huge chemo blast to the bone marrow followed by a transplant of the stem cells drawn from my blood. But with the biomarkers still high, this plan was shelved. So, after 12 months and 4 failed and pretty gruelling treatments, my myeloma was classed as refractory ‘resistant to treatment’ and relapsed – things were looking pretty grim. Was I worried? Would worrying help?

    My consultant then prescribed the very latest maintenance therapy, and the results were almost immediate. My biomarkers began falling to manageable levels and the lower toxicity of the drug meant I started to feel more normal again. I resolved to do everything I could to improve my chances of surviving and started walking and improving my diet. During 2013, I recovered some fitness and shed the two stone in weight I had accumulated during treatment. It’s hard to resist chocolate when you might have already had your last beach holiday, but it’s easier when it might help prolong your life.

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    Question: pain 8 years later

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    WNMyeloma posted an update

    Early lenalidomide delays multiple myeloma progression

    Early treatment with lenalidomide for smoldering multiple myeloma appeared to delay progression to symptomatic multiple myeloma compared with observation alone, according to results of a randomized phase 3 trial published in Journal of Clinical Oncology.

    “We decided to conduct this research after a 2013 trial by Mateos and colleagues of lenalidomide plus dexamethasone compared with observation alone for high-risk smoldering multiple myeloma. My colleagues and I wanted to address the same question, but with lenalidomide alone to remove the side effects of dexamethasone,” Sagar Lonial, MD, FACP, chair and professor in the department of hematology and medical oncology at Winship Cancer Institute of Emory University, and a HemOnc Today Editorial Board Member, told Healio. “It was also becoming clearer that not all patients with smoldering multiple myeloma were the same, and that for the highest-risk group, early intervention may make a big difference.”

    Results of the phase 2 run-in trial, which included 44 patients treated with lenalidomide (Revlimid, Celgene) to assess safety, showed PFS rates of 98% at 1 year, 87% at 3 years and 78% at 5 years.

    For the open-label, multicenter phase 3 trial, Lonial and colleagues enrolled 182 patients (median age, 64 years; range 31-86) with intermediate- or high-risk smoldering multiple myeloma.

    Researchers randomly assigned patients to either 25 mg lenalidomide (n = 92) on days 1 to 21 of every 28-day cycle or observation (n = 90). Both therapy and observation continued until disease progression, toxicity or withdrawal for other reasons.

    Patients assigned lenalidomide were required to use thrombosis prophylaxis, which could consist of a minimum of 325 mg aspirin daily, and were encouraged to mobilize stem cells after four to six cycles of therapy.

    PFS served as the study’s primary endpoint, with disease progression requiring the development of end-organ damage attributable to multiple myeloma and biochemical progression, according to the researchers.

    Median follow-up was 35 months.

    Fifty percent of patients (95% CI, 39-61) in the lenalidomide group responded to therapy, whereas no responses occurred in the observation group.

    Results showed significantly longer PFS in the lenalidomide group compared with the observation group (HR = 0.28; 95% CI, 0.12-0.62). PFS for the lenalidomide group was 98% at 1 year, 93% at 2 years and 91% at 3 years, compared with 89% at 1 year, 76% at 2 years and 66% at 3 years for the observation group.

    Thirty-six patients (41%) in the lenalidomide group experienced grade 3 or grade 4 hematologic and nonhematologic adverse events, including 25 patients (28%) with nonhematologic events. Four deaths occurred in the observation group vs. two deaths in the lenalidomide group (HR for death = 0.46; 95% CI, 0.08-2.53). Forty-five patients in the lenalidomide group discontinued treatment, including 18 who stopped because of adverse events from treatment.

    Three-year cumulative incidence of invasive secondary primary cancers was 5.2% in the lenalidomide group vs. 3.5% in the observation group.

    “For patients who are in the highest risk category of smoldering multiple myeloma — those who meet the Mayo 20/2/20 criteria, which is the group that benefited most with a reduction in risk for progression to multiple myeloma of more than 90% at 3 years — early intervention does offer benefit,” Lonial told Healio. “The next question is, can more treatment offer additional benefit over simply lenalidomide or lenalidomide plus dexamethasone? We do not know the answer, but it is being tested in the current ECOG trial of lenalidomide plus dexamethasone vs. lenalidomide plus dexamethasone and daratumumab [Darzalex, Janssen Oncology].” – by Jennifer Southall


    Mateos MV, et al. N Engl J Med. 2013;doi:10.1056/NEJMoa1300439.

    For more information:

    Sagar Lonial, MD, can be reached at Winship Cancer Institute of Emory University, 1365 Clifton Road, Building C, Room 3000, Atlanta, GA 30322; email: [email redacted].

    From HemoOncologyToday

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    WNMyeloma wrote on Ihatecancer78's wall

    We took care of both of my parents in hospice. The local hospice was a great help and made the whole process much easier than I had imagined it would be. We wish your family well during this difficult time.

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    Feel free to borrow our Top 5 Resolutions. After these all of the rest are just small stuff.

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    WNMyeloma wrote on Barbhubb's wall

    Welcome to the site, we hope you are doing well with treatments. If you are having issues with anything we can probably help with some information and tips to help you get around them. Just ask what you need.