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Thread: Ill Health

  1. #31
    Hi Nicky,
    I'm a Myeloma Survivor! I was diagnosed in 2006 by my very inquisitve GP. I have done the rounds of chemo, StemCell harvest, transplant and more chemo. I am now in about year 6-7 of remission. I have had a few scares, but normally it's a passing transient that does not require intervention. Is there a way to contact you, off the site? I could talk to you and tell you about our local support group here in Suffolk. ( have a look at www.Cheddar-steam-club.org.uk I'm available via the webmaster link.)

  2. #32
    Hi Nick, yes indeed you have a rough road ahead...I had an uncle with much the same diagnosis and found in the same way, after months of back pain...his situation was definitely not good, but this was back in the '70's, and I must agree that with all the advances they have made...and with all the progression they continue to make, I think you can believe that you can continue with a positive outlook...we just don't know what advances may be right around the corner, and I will pray for that Nick, and I will pray for your family and friends who obviously feel so helpless...I will pray they will have the strength to give you the continued support you so desperately need...and if I can be of any help as someone to just "talk to", then you know I will...keep us updated mate...you have our support...Suzy in Ireland

  3. #33
    Ill Health

    Member Since
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    Hi Nick.

    Hopes and best wishes for a full and healthy life once you're through the treatment.
    Pete.

  4. #34
    Ill Health
    vita64's Avatar
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    My uncle's granddaughter and grandson were toddlers when he was first diagnosed with multiple myeloma. He retired, did his first round of chemo, went into remission, bought an RV, and traveled all over the U.S. I'm not sure how many rounds of chemo/remission he did, but it must've been several. Eventually the chemo no longer worked and he underwent a bone marrow transplant. That got him a really long remission. He lived to see his grand-babies graduate high school. His disease eventually did claim his life, but he lived for a very long time with it and most of that time was happy, relatively healthy, productive time. Medicine has come a ways since then and will continue to progress as you face your disease. Your prognosis could be even better than his. Best of luck to you.

    Edit: I watch a lot of documentaries. Tonight's was a 2004 episode of BBC Horizon about the drug Thalidomide. Though it's probably common knowledge now, in the late '90s it was found to be an effective treatment for multiple myeloma. I wonder if my uncle took it or not. You might want to watch the documentary. https://www.youtube.com/watch?v=7KZ5...8&spfreload=10
    Last edited by vita64; 11-29-2014 at 08:57 AM. Reason: Adding information

  5. #35
    I don't read this forum much but this topic caught my eye. I have a cousin in Toronto (Canada) who recently went through treatment for MM. He emailed us regularly during the treatment. He reacted relatively well to the treatments all told, and has been in remission for half a year now. Based on the info provided by him, you're lucky to have been diagnosed in time to treat it, if at all (apparently it's a rare ailment, and difficult to diagnose). One thing he wrote about was his gratitude for the existence of meal-replacement drinks. Here they're branded Ensure. He was able to keep his weight up during treatment via these drinks. Currently the survival rate is 90% after 3 years, so quite good for a cancer. Here is his first email to us:
    Dear cousins,

    After a long period of ever worsening back pain, I was diagnosed with multiple myeloma at the end of December. This is a type of blood cancer caused by malignant plasma (white) cells in the bone marrow. It generally occurs only after age 60.

    Multiple myeloma has a genetic factor and seems to run in some families, so you and your children may be at increased risk compared to the general population. This risk is low. Total new cases diagnosed annually is 5 in 100,000 people. So a total of 2,300 people/year in Canada, 230/year in Toronto.

    There is currently no known cure for multiple myeloma, but there are a lot of treatment programs to control it and extend a patient's life.

    I started a cancer treatment program on Jan 13 at Sunnybrook Cancer Centre with two types of chemotherapy and four other drugs. After 5-6 months, I will get a stem cell transplant to replace all the blood cells in my bone marrow, using stem cells extracted from my own blood. This is the best current treatment to provide a significant remission period.

    Multiple myeloma can create a number of different problems. In my case, it was absorbing calcium from the bones, making them weak. The calcium also goes into the blood stream and puts stress on the kidneys.

    I noticed back pain in October. My usual back remedies weren't working so I went to my GP in November. He put me on a high anti-inflammatory drug. This didn't help (and was actually the wrong thing to do. Myeloma generally puts stress on the kidneys and non-steroidal anti-inflammatory drugs, such as ibuprofen adds to the kidney stress).

    My back got worse, went into my hip and I needed a cane to walk. A hip X-ray indicated a possible hip fracture, but the radiologist recommended I go to the ER for a more detailed image. At Sunnybrook hospital, a CAT scan showed bone lesions in the back and pelvic area. I spent 3 days in the hospital as one test led to another, and a week later they confirmed multiple myeloma.

    My back continued to worsen, went into my other hip and for about two weeks I couldn't walk at all. Just this week I have seen some improvement and I can walk around the house with a cane. But my bones are very weak and I am at risk of incurring a fracture. So I am getting some radiation therapy to the hip area.

    I think my case could have been diagnosed sooner. A year and a half ago I saw my GP about constipation. High blood calcium is a cause and can easily be detected with a blood test. However, GPs generally start with an approach that covers 95% of cases. My doctor recommended more fibre in the diet and Metamucil. I questioned him on this after my diagnosis. He said calcium blood tests are not included in general checkups and are not paid by Ontario medicare. He also noted that when he refers patients to bowel specialists, they generally don't do calcium blood tests either. The fact is that multiple myeloma is difficult to diagnose. My GP is around my age and has only seen four cases in his life. Younger doctors have probably never seen a case of multiple myeloma.

    One lesson learned that may be useful to others is that if you experience bone pain (spine, ribs) insist on a CAT (or MRI) scan. Bone lesions seen on these images were key to getting the correct tests for a diagnosis.

    However, myeloma has multiple presentations. One is anemia, rather than bone pain. I don't know what a good diagnostic path is for that case.

    I don't have a specific prognosis for my case yet. Published survival rates vary quite a lot. For now, I am going with one of the better results, a survival rate of 90 percent after 3 years.

    Overall I am getting excellent medical advice and care and I am pretty positive that I will do well.
    He did do well and I expect will as well.

  6. #36
    Thumbs up Ill Health
    Admire your positive attitude and, being Welsh, you can hopefully stay that sense. I send best wishes from an Aussie-Taff. Some metaphorical sunshine might help, so it is 'winging its way to you'.

  7. #37
    Ill Health
    Rod's Avatar
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    Dear Nick, my very best wishes for a successful treatment and a rapid recovery.
    Look forward to seeing more posts from you during the long otherwise boring hours of treatment and convalescence.
    I used to be conceited but now I'm perfect.

  8. #38
    Ill Health
    nickyr's Avatar
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    Wow guys. Just wow.

    My family and I are massively overwhelmed by the messages of support and kindness posted here. I'll try to get round to contacting those who have offered a chat when I can, and I am in a routine of treatment - and back at home with some time on my hands!

    I deliberated for some time before hitting the post button on this topic, thinking that perhaps a computer forum wasn't necessarily the best place for this. But although I don't post a lot here (and when I do it's generally more questions than answers!!!), I have been a member for around 7 years (I joined the day I bought my first iMac I think) and have a sense of belonging and feeling of friendliness on this forum that I don't experience on others. That's why I decided it was right to post.

    Also I felt that sharing problems and experiences with fellow cancer sufferers would be of immense help, not just to me but perhaps to other sufferers too.

    Anyway, I'm hoping to get home to my family and my dog this week (been in hospital for 2 weeks now) and home to my iMac which I'm sure is missing me as much as I miss it!

    Finally, I amazed myself the other night by being able to transfer a photo from my iMac at hom to my macbook in hospital so I could do my blog.

    Thank you everyone for making up what I consider to be the finest forum on the internet :-)

    And IWT - it's in hand! I'm writing a simple guide for my wife and daughter.
    Johann Gambolputty de Von Ausfern....of Ülm

  9. #39
    Ill Health
    McBie's Avatar
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    Nick,
    Sorry to hear that.
    My prayers are with you & your family, and I will light a candle this Sunday for a full recovery.

    Cheers ... McBie
    A computer lets you make more mistakes faster than any invention in human history - with the possible exceptions of handguns and tequila.
    The bitterness of poor quality remains long after the sweetness of low price is forgotten.

  10. #40
    Hi, sorry to hear your news. I don't know if this helps, but I was diagnosed with throat cancer at the beginning of this year. I had 6 weeks of Radiotherapy and Chemotherapy and I must be honest it wasn't easy and I lost three stone. I am now clear of cancer but I also realise it could come back.
    The treatment I received at my NHS Hospital here in Carlisle UK could not have been better.
    I now am back to full fitness and hope it works out the same for you.
    Best wishes,
    Bill O'Brien

  11. #41
    Ill Health
    nickyr's Avatar
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    for those that haven't seen this...

    needless to say the gallows humour from my closest friends reached new heights!
    Attached Images Attached Images
    Johann Gambolputty de Von Ausfern....of Ülm

  12. #42
    Ill Health
    Rod's Avatar
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    Hi Nick, you look like you're keeping your chin up even if it is with the help of a walking frame. I for one am very glad you shared this on the forum. We are after all a sort of supportive community with a shared interest. I had prostate cancer 5 years ago and thankfully recovered completely thanks to the advances in medical science that allowed a non invasive surgical method to be used. So I have some idea what you may be feeling.
    Please feel free to PM me any time and at the risk of repeating myself may you have a hassle free treatment and a speedy recovery.
    Cheers,
    Rod
    I used to be conceited but now I'm perfect.

  13. #43
    Ill Health
    vita64's Avatar
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    I added an edit to my earlier reply up above.

  14. #44
    recovering from traumatic illness
    Dear Nick - My heart and soul go out to you during this leg of your journey; and, how courageous to share it with us. As you've already perceived, it does bring enlightenment.

    Two books that changed my perceptions and helped me survive, and even thrive.... 1. Dark Nights Of The Soul by Thomas Moore ..... 2. Wishes Fulfilled by Wayne Dyer.

    I pray the universe shows you how grand it really is. Holding you in prayer - Viqueen
    Last edited by viqueen; 11-29-2014 at 01:54 PM.

  15. #45
    Ill Health
    RavingMac's Avatar
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    Nick,
    Just saw this as have been distracted by the holidays and family at home.

    Praying also for you. My son-in-law's father recently got the identical diagnosis, so in a way, reading your post and the replies has been encouraging, since we didn't know what to expect.
    I've always wanted to be smart, handsome and modest. But, I guess I'll have to be satisfied with two out of three . . .

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