Baby Talk Part Two

umbilical_cord_blood

Firstly please ignore the post from last week, I was spewing out a quick draft whilst waiting to be seen at the hospital, clicked on what I thought was the button to save it but it turned out to be the one to publish it! Damn, those that follow my blog by email will have seen all my spelling mistakes and poor use of the English language!

Anyway back to Part 2 of Baby Talk. Just to refresh your memory from my last post, Baby Talk Part One, I’m at the post auto transplant meeting with the transplant boss. She’s told me the bad news that it looks like my stem cell transplant hasn’t worked, then she dropped the bombshell that I am unlikely to respond to Revlimid as the next line of treatment and then that the donor transplant as an option is a no goer as there will never be an adequate match for me. Can it get any worse?  For those reasons she suggested a cord blood transplant which she has never done for myeloma before but would be willing to give it a go.

She explained what is involved and the risks and benefits of the procedure. The risks are numerous from failure to engraft, meaning that the cord blood stem cells don’t take in my bone marrow so I could die because my bone marrow has been wiped out by the conditioning chemo I will receive prior to the transplant. Then there is high risk of infection whilst I am neutropenic and waiting for the new stem cells to engraft and also for the next year or so. A clean diet must be followed for 6 months and travelling abroad is not possible for 6 to 12 months. Hence all the holidays! And finally I am highly likely to develop some graft versus host disease which in the first 3 months or so is called acute and after that it would be considered chronic which could be a long term issue. GVHD is where the new stem cells don’t like being put into my environment (me being the host) and attack it causing skin, gut, mouth, liver or other organ problems which can be life threatening or “not compatible with life” as another doctor recently said to me.

And of course while all this is happening there is the possibility that the myeloma is coming back. The only good thing about getting GVHD is that hopefully it means that the new stem cells don’t like my myeloma cells either and attack them too, as long as the myeloma burden is not too high. And that in essence is how a donor transplant works whatever the source of the stem cells ie adult or cord blood. It is a form of immunotherapy, the aim of which is to replace my defective immune system with a new healthy one.

So the benefit is that it could give me a new immune system that deals with the myeloma cells and kills them in a way that my own fails to do. That is if I survive the procedure and don’t get any life threatening infections or GVHD. This graft versus myeloma benefit could last a long time, as I said before, a small proportion of patients may be considered “cured” and die of something else.  Or more likely according to the boss, I could get a year or two out of it before I relapse. I have to view it as extending my treatment options rather than being a cure. When I relapse I can be retreated with previous drugs that I may have been resistant to as my immune system will be different as well as being able to try any newer treatments that have come on to the market so it gives me more options (with the remote possibility of being curative) than I seem to have if I don’t have it.

If the autologous stem cell transplant had been effective then the decision would have been more difficult as I could perhaps count on 6 months or so remission, then a slow relapse before I needed to start treatment again. But the way it looks now is that my light chains are slowly creeping up and I would need to start treatment quite soon and that treatment might not work, if the boss’s fears prove to be correct. I’ve been quite heavily treated and the more treatment you have the harder and stronger a different myeloma clone comes back.

I left that meeting feeling overwhelmed and upset but more or less deciding to go ahead with the cord blood transplant assuming there were cords available and my light chains had not risen significantly higher. I would have a 3 month post transplant bone marrow biopsy to find out. Then I thought of more questions to ask after I left and had a second chat with the boss to talk it over again the next day. The talk was of having the transplant as quickly as possible and I needed to make a decision so that the cord blood tissue typing process which takes a few weeks and costs thousands of pounds could be commenced.

This was probably the most difficult decision that I would ever have to make. How do you decide? Toss a coin, ip dip, set up a poll on my blog and ask readers to vote, weigh up the evidence (there is hardly any), ask my friends what they would do (they don’t know), ask others I know with myeloma?  I was on the horns of a dilemma. The boss said there was no right or wrong choice, just the one that I felt sat right with me. Am I a risk taker in life, no not really, but maybe this was the right time to be one?  I am also very indecisive about the simplest of decisions which coupled with my cautious nature and resistance to change does not equip me very well to make decisions. Yes I had previously decided to have a donor transplant before but the risks were fewer, I was 3 years younger, in very good remission following my transplant and assuming I would have a fully matched adult donor available. At the second meeting I thought about asking the boss the question what would you do if you were advising your sister or if it was you, not sure whether to ask it or not as I thought most doctors would duck out of answering that question, but she volunteered the information saying that if she were me she would do it. I asked her if she was recommending that I have it with all the inherent risks and she said yes she thought it was my best option, not that there were many.

It was that strong expression of opinion which is quite unusual from doctors that helped me make my mind up to go ahead with it and she said she would initiate the cord blood matching process and arrange a bone marrow biopsy. I asked about going on holiday as it was only two months or so after my transplant and a little early for travel abroad and she said go for it, life is too short and so I did!

Between coming back from Egypt and going to Iceland I had a bone marrow biopsy and when I got back I got the results which were that I had 5 to 10% abnormal cells in my bone marrow. If it was much higher than this than the cord blood transplant wouldn’t go ahead and the doctors seemed to be pleased with the results and I was given an estimate of mid to late March for admission for my transplant which involves a stay in hospital of 4 to 6 weeks.  I have 10 cords that match and the absolute best two have been selected, one from within the UK and the other all the way from Australia! NO expense spared! I have passed the various pre transplant heart and lung tests, am feeling pretty fit and good to go.

I now have a date of the 20th March for admission and the start of the conditioning chemotherapy which will go on for 5 days, followed by total body irradiation on the 6th day and the cord blood stem cells infused in the same way as my own cells were last time on the 7th day. Then I have to wait for the new cells to engraft whilst becoming neutropenic. If they do engraft and my neutrophils pick up I’ll be allowed to leave, if they don’t then as a last resort I could be given my own stem cells back to rescue me as I still have some left. Then I will be closely monitored and on powerful immunosuppressant drugs for around 100 days afterwards.

The last month or so I have spent lovely precious time with my family and friends. I have been happy but also highly emotional in a good way,  everything and everyone seems better and brighter, like I am seeing the world through rose coloured glasses or maybe I truly have been living in the moment (or maybe I have taken drugs of a non medical nature).

I am nervous, scared and anxious and despite my views on positive thinking (see a previous post, hello relapse, goodbye remission)  feel that this is the time to take a risk and be positive as long as no one is telling me to be positive!

I intend to blog about my experience in hospital to try and while away those 4 to 6 weeks in an isolation room but in the meantime wish me luck!

 

33 Comments

Filed under Cancer, chemotherapy treatment, Cord Blood Transplant, Health, Life and death, Multiple Myeloma, Myeloma, Relapse, Remission, Stem cell transplant, Travel

33 responses to “Baby Talk Part Two

  1. Tracey

    Wow, Wendy, what a serious head f**K this must be for you! You have absolutely made the right decision and I wish you all the luck in the world and more. You are such a brilliant, natural writer and I look forward to reading the next instalments. Will he thinking of you over the coming weeks. Tracey xx

  2. Wishing you all the luck in the world, and looking forward to reading your future blogs!

  3. lesley cork

    Wishing you good luck and sending positive vibes your way.An inspiration to all.

  4. Scott

    Wendy,

    Well done on a difficult decision! We all know that these treatment decisions are never easy and take some real soul searching before taking the plunge. For what it’s worth, I think I would have done the same thing. Nothing ventured and all that…

    Keep strong, all the best and keep us updated with your progress.

    Kind Regards

    Scott

  5. Prue

    Hey Wendy, your blogs, as usual, a total gift, I appreciated baby talk part 1 as well, your extraordinary candour, I don’t know whether it’s embracing fear exactly but it’s certainly staring it down, you haved lived and shared life through your blogs in a remarkable way, in the last couple of years, cutting through to the ‘moment’ and sharing what it’s like.

    I’m glad one cord comes from Australia, it will have the warmth of our sunny climate , helps me feel connected, not that the contribution is mine ! I wish you lots of luck, send you all my love and will be watching for the posts!

    Prue xxx

  6. Wow, you are very brave! And I hope the very best outcome for you. I’m not sure I could make that decision, but one never knows till faced with it. You have amazing courage.

  7. susan spruce

    That is really a lot to take in Wendy, and I admire your courage to go for the Cord Blood Transplant. You are a very positive person and I know you will come through this and I wish you all the luck in the world – go get em !!!xx

  8. Bruce Fox

    Wendy!!! We’re off to Paris to today, celebrate my 60th Birthday! Here’s wishing you a very successful transplant and many Happy Birthdays after all of these procedures! Sending hugs and lots of Love! Bruce & Colum

    Bruce

    >

  9. alexbicknell

    Excuse the gallows humour, but I do love the expression “not compatible with life”. Must remember to drop it into conversation sometime.

    Wendy. I will be thinking of you and following your postings. Hope it all goes well. See you again on the other side.

  10. Joe Brown

    Wendy, you’re daily in my thoughts, even though we’ve never met. Your enduring determination and positivity are very humbling and extremely infectious (good infectious, not like flu or something).
    Stay strong and stay positive.
    Go girl, go.
    I’m running out of superlatives….
    Joe
    X

  11. Brenda

    Wishing you your continued strength of mind and body through the cord blood transplant. What a lot of things to get your head around.I appreciate the way you weighed every aspect of the possibilities open to you and came to your decision. I think I might make the same decision Wendy. Your Drs candor is remarkably out of the ordinary. Good for her and I can understand it having an effect on your decision. You will remain in my meditation as always.
    Sending love and gentle hugs your way,
    Brenda

  12. Pat Bolton

    Thinking of you today Wendy having the line fitted & will be thinking of you constantly while you go through this gruelling treatment. If anyone can do it – YOU can. Your bravery shines through as an example to us all.
    Sending you lots of love & tons of luck.
    Pat & Nick xx

  13. Pat Bolton

    Hi Wendy whenever you feel up to blogging again, hope you read this to know that we are constantly thinking of you & wishing you well.
    Lots of love from us all Pat. Nick & Aurea xxx

  14. Sheri from Idaho

    Wendy, Wow is all I can say. You are brave, and I hope the journey is going well so far. I will be thinking of you, and sending good wishes your way!

    • Pat Bolton

      This is THE DAY Wendy. You know we are thinking of you all the time & send massive good luck wishes for your cord blood stem cell infusion to be a success.We have everything crossed for you. You are so strong & brave, a total inspiration.
      Much love Pat & Nick xx

  15. Kia

    Hi Wendy , I’ve been silently following your blog for nearly two years. It’s helped me understand what my father is going through having being diagnosed with MM on April 12, 2013. That day will forever be engrained in my brain. It rocked our family to the core. He has days where he’s not so positive about his outcome. Your blog has given me hope, courage and comfort during some very difficult times. I look forward to your next blog when you tell everyone that the procedure was a success and your planning your next trip! Any thoughts on where that may be??? 😃
    Kia

    • Hi Kia, thanks for your comments, it’s going to be a long haul before I’ll be able to say whether the procedure was a success and maybe 6 months to a year before I can travel abroad but there’s lots of lovely places in the UK to go!

  16. Hi Wendy!
    Thinking of you and hoping any tough side effects are as few and as brief as possible. You’re a true myeloma pioneer! One small step for Wendy, one giant leap in knowledge for us lot… Let’s hope this buys you a long chunk of hospital-free fun after the upfront investment of all the current medical time. Hope you’re finding ways to pass the time (or it’s all a blur!)
    “Helga” (doing well, off to Rome tomorrow)

  17. Cheering you on from across the pond… my SIL has MM and it was why I began writing a blog because he could not travel for the longest time. But I will be intending this is a success for you and that even though it’s a long haul for now there is a lovely sunrise in your future on some adventure you are ready to begin…

  18. Tracey Sharp Childs

    Hi Wendy, i’ve been wondering how you’re getting on and am a little concerned by the lack of updates. Hope everything is working out for you. Tracey x

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