So here goes…

On Friday I had a call from my specialist Myeloma nurse and found out that I have what they call Nonsecretory Myeloma. Apparently this is a topic shrouded in apprehension and mystery, according to the Myeloma Beacon site. Less than 5% of all patients with multiple myeloma have nonsecretory myeloma. Trust me to get that one! This form of the disease cannot be diagnosed or tracked by the presence of monoclonal (M) protein in the blood and urine or immunofixation studies; however, it can be detected in the bone marrow or upon biopsy of bone lesions. Patients with nonsecretory multiple myeloma are treated the same way as other patients with multiple myeloma with most having the stem cell transplant, that I am in leading up to in a few weeks time. It appears that the prognosis is about the same, however, patients with nonsecretory myeloma are less likely to have myeloma-related kidney damage, which is to be a bonus.

It will all kick off on tomorrow (Tuesday) with another bone biopsy which I reminded my nurse that I WOULD require sedation for. I don’t know why they consider giving it without as it really is pretty painful, having had two without and three with I know the difference. I will then be given a Pic line. Through this I will receive four different chemo regimes daily including apparently getting a little back pack that will continuously deliver one of the chemo drugs throughout the day and night for the four day cycle. I have my room booked into the NHS hotel with a hospital bed on standby if the need arises. I will apparently be able to walk about outside but I need to stay close to the hospital and a trip to Selfridges is out of the question, which is a bit disappointing. I need to stay pretty close by as they have to closely monitor the effects of the drugs to my healthy organs and cells and keep a close eye out for infections as my blood counts drop and I start to become neutropenic due to the loss of my white blood cells. This is a period of time when I am most susceptible to infection and do need to avoid catching anything if I am to prevent ending up in hospital.

All being well I should be home by Sunday. Depending on the outcome of all this I will either need to go through the whole cycle again or have a couple of weeks recovery before going back into hospital for the stem cell transplant. I have previously tolerated my treatment pretty well although I do hope I don’t develop the painful neuropathy again. My hair will fall out at sometime but I can cope with that. I am not looking forward to losing my taste buds again though.

Both Colin and I are a little apprehensive but we are both very confident in the medical team and know we are in the best of care.

I expect it will be a pretty boring week really but I have my knitting and my competition magazine to keep me busy. And of course I have all my technology as long as I don’t go near a washing machine today!

If any one does want to contact me I am on Facebook, you can do so through this blog, most of you have my email address or phone number or I can be reached via the Cotton Rooms at:

Cotton Rooms
1 University Street
London
WC1E 6AQ
Telephone: 020 7380 0030

I shall keep you posted as to how things go.

Enjoy your week remain positive and take some time to appreciate the many beautiful things in the world around you.

Deborah x

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21 thoughts on “So here goes…

  1. HI Deborah, I’m Paul one of the folks on Patients Like Me, been sort of a background reader following your blog, I’m a fellow patient, am wishing you all best as you continue your journey and the process leading up to the upcoming stem cell transplant, I too may be facing that in the future, but for right now still on the chemo thing with good results so far . . . but the myeloma thing ya never know what tomorrow will bring, just hoping for you it is good things with better numbers and a thing called remission! Take care, Paul.

  2. Keep fighting Mum/Grandma and don’t forget your card. We love you millions but will hold off seeing you while you’re neutropenic. Stay strong and we will see you again soon I’m sure xxxxxxxxxxxxx

  3. You don’t know me, I am a friend of Kate’s, but just want you to know that loads of positive energy and healing thoughts are coming from here. You really are an extraordinary person and an inspiration to many. With all good wishes, Heather.

  4. Deborah You will have many prayers going out for you including mine. It seems there is no end to the misery this terrible disease can cause! All my very best wishes.

  5. Hi Deborah just to say we will be thinking of you in the days ahead and look forward to the time when we can visit you at home and have a chat and a laugh over a coffee. Keep positive as you tell us all to do and appreciate the good things and friends in life.With much love and prayersBetty & Ed xxxx

    Date: Mon, 28 Apr 2014 05:59:53 +0000 To: bettythorn@live.co.uk

  6. I also am non- secretory diagnosed 1/10/10
    2 SCT last in 12/9/10
    Pet scan every. 6 months #10 4/29/14
    65 on May 10 staying active and living in this moment
    Stay Strong you will be ok
    Gilbert in Nj USA

  7. Got results of #10 pet scan today all is great met another non – secretory dude on the way out of hospital he just got his monthly shot of velcade
    Unusual to have 2 non-secretory people meet
    We are rare I am not on any Meds for MM
    Hope you do well with your treatment if you have any concerns about side effects feel free to reach out to me
    Stay Strong!

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