“A walk in the park…”

These were the words uttered by my consultant a couple of weeks ago, in relation to my forthcoming allogeneic (donor) stem cell transplant… “It will be like a walk in the park compared to the autologous (my own cells) transplant.” Strangely, I’m not sure if hearing this has had any alleviating effect on my nervousness.

I also had a conversation earlier this week with Lynn, the transplant co-ordinator, who has promised me that I won’t have a bad time with this procedure.

It could be fine. I could be fine. It may be just like a walk in the park – one of the strangest walks I’ll ever have, I have to say. But… only a few procedures, a few days in hospital, tiredness and weakness for a few weeks and then back to normal. Hmmm, it feels very odd – like I’m making a big fuss over nothing… until I remember that my immune system will be compromised severely for up to a year and generally for the rest of my life.

After the transplant I will be taking immune suppression drugs, prophylactic antibiotics and antiviral drugs for months. I will need to be monitored carefully for months – initially twice weekly, then gradually less frequently – to check my immune system and the levels of immune suppression drugs. They need to suppress my immune system so that my body doesn’t reject the incoming foreign stem cells, but this also means that I am at risk of catching all sorts of infections, which could be quite serious, even life-threatening. A simple cold for a normal healthy person could easily turn into pneumonia for someone with a suppressed immune system.

I will have to be careful about food and dirt and my cat and gardening and being in public and any other risks of infection, all of which carefulness may seriously limit my activities and social life for the next year.

I have no idea whether or how I will be affected by the Graft versus Host Disease [GvHD], which won’t hit me until around 3-6 months after the transplant, so that entails an element of watching and waiting to see what, if anything, will happen – potentially quite a tense period. And I have no idea how the new stem cells will “settle in” – whether they will achieve 100% chimerism, which is when the new cells completely take over and become my new immune system.

Here’s a strange thing… when the chimerism happens, it won’t just be my immune system, but also my blood group and DNA that will change to that of my donor. Actually, I found out yesterday that my donor and I both have the same blood group – O Positive – so that won’t change. But as for the DNA, yes, I have already had a few conversations about which crime I could commit before my DNA changes.

And here’s another strange thing… cytomegalovirus, or CMV for short, is a virus that, like herpes, remains dormant in someone who’s been infected with it. They check both the patient and the donor for the virus prior to the transplant. If both are negative, then they don’t need to monitor it, but if one of us is positive, then they will keep a careful eye on it after the transplant because while infection generally goes unnoticed in healthy people, it can be life-threatening for someone who is immunocompromised. When I was first told about the donor, my consultant also mentioned that we both showed up as negative for CMV. However – and here’s the strange bit – as of last week, I now show up as positive… So, that’s one more thing to be concerned about and to be monitored for.

_ _ _ _ _ _ _ _

Conditioning is what they call the chemotherapy and irradiation that condition or prepare the body prior to transplant. The conditioning is much, much less harsh than the auto transplant last year, when I had an extremely high dose of very strong chemotherapy to totally ablate the bone marrow, requiring the transplant of my stem cells to ‘rescue’ me from its effects.

In a mini-allo transplant, the chemo and radiation are given mostly to suppress immune reactions and therefore prevent rejection of the new stem cells. So, the chemotherapy is reduced intensity, the irradiation is a very mild dose – ten times lower than the highest dose used for treating cancer. I’ve been told (promised!) that neither the chemo nor the radiation will give me much of a reaction – no sickness, no diarrhoea, no mucositis, no hair loss. The oncologist said that there could be some fragility and weakening of the hair. I’m guessing that may be like when I was on the initial treatment last year (which included a mild dose of chemotherapy in tablet form), where my previously glossy, big, curly hair just became flatter and flatter and more and more lifeless. Only now, I have a very short crop, so perhaps it will be less noticeable…?

So, compared to the hell I went through last summer, having so many promises that this time it won’t be anything like as bad – just like a walk in the park… well, it barely feels worth mentioning.

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About Jet Black

I began blogging because having been diagnosed with Multiple Myeloma, I wanted to share my experiences of living with an incurable cancer. Through blogging, I discovered that I enjoy writing. I have always chosen to live life for the journey, more than the destination. This is as true for the act of writing as it is for living with myeloma, so these are two things I do: I live and I write!
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10 Responses to “A walk in the park…”

  1. kelley says:

    This is so interesting. I wish you the best as you go through this. I actually had someone tell me my auto transplant wasnt a real transplant and no big deal. I will be following your story, hoping for all the best for you.

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  2. Thanks Suzanne/Kelley (not sure which is your first name…?)

    I think anyone saying an auto isn’t a big deal seriously has no idea what we go through. I find the “no big deal” comment very insensitive, not to say offensive. I can understand the theory of the “not a real transplant” comment, as the procedure is less to do with transplanting new cells, like a new organ, and more to do with being rescued from a mega-high dose of highly toxic chemotherapy, as I’m sure you know. Nonetheless my auto transplant was quite hellish and very much a big deal. Please feel free to send them a link to my blog – I went through the auto last August and blogged throughout.

    This one is a big deal in another way, of being a lot more dangerous than an auto, otherwise they would do an allo as first line treatment. They don’t… and yes, I asked this question… because it has a higher rate of mortality. It also takes a lot longer to recover from and it’s less predictable how each patient might respond. I forgot to mention that in the blog.

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  3. Catriona Yule. says:

    I hope it is as the doctor is making out, though it sound more like a walk down a road that has a few sign posts to show you the route which may not actually be pointing the right way and detours maybe needed – the locals are capable of surprises. Thank …….. (insert the word you relate too!)…….that you live in a country that can offer you this treatment without bankrupting or making you beg for funding; long may it remain. I hope its an easy journey and you reach the high ground without too much struggle or set back and I also hope there is plenty of laughter, joy, wonder and calm along the way to offset the down times.

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  4. I’ll be sending you love and good thoughts across the thousands of miles between Washington State and the UK. I can tell from your posts that you are a very strong person and that bodes well for this next transplant. Take good care my dear . . .

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  5. Don’t expect they would think it was a walk in the park if it was happening to them!

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  6. Mavis says:

    Hi Jet
    Just want to send you my very best wishes.
    I sometimes think that those who say things will be like “a walk in the park” are those who only watch from the outside! Lovely though they are, they can’t really know what it is like.
    Take care, and may your immune system prove to be rock solid.
    Love Mavis x

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  7. Thank you to Carole Leigh, Meg and Mavis for your support generally and with this post.

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  8. Sandra abraham says:

    Hey Jet I love reading your blog you make more sence than any of the doctors !!! Keep it up xxx Sandra.

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  9. Pingback: Breaking a taboo | jet black living…

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