What’s stopping me from starting chemo?

For those interested in the details I am going to explain the problem that has been stopping me from starting my next round of chemo. Well, explain the issue to the extent of my understanding, so there may be some inaccuracies

Before receiving each dose of chemo the white blood cell count should be at a minimum level to give you the best possible chance of avoiding or fighting infection.  After receiving chemo your blood counts drop quite dramatically, so obviously the higher the count is when you begin the higher it will be at its lowest helping in fighting infection.

As I wrote previously I should have began chemotherapy last week, but it was noticed that my count was low.  Now this is where my understanding of things is a little sketchy.  With regards to receiving chemo they look at the levels of a specific type of white cell called Neutrophil‘s.
In a normal person this is usually in the range of 2.0 to 6.0. However because of the immunosuppressive medication I take to lower my immune system so it doesn’t go and attack the foreign liver in my body my levels are a little lower so I’m at disadvantage when undergoing chemo. When receiving chemo the preferred minimum level is 1.0, which is already quite low as it is. This will drop after receiving chemotherapy hitting it’s lowest point after seven to ten days, after which it will start to increase again. As I’m starting from a lower level in the first place, it gets pretty damn low after chemo.  It’s not unusual for the following treatment to be delayed by a week or so to allow the count to build back up further if it’s still below 1.0 before treatment begins.  Because I’m immunosupressed I’m always just at the minimum level, and my treatment had to be delayed by a week twice during my eight previous treatments as I was not at the minimal level. Now, I went to hospital last Monday my Neutrophil count was 0.8, and on Tuesday it had dropped to 0.6, which is pretty slim pickings and my doctors were not too keen on starting treatment.

The problem is they are unsure why it’s so low. The last session of my first round of chemo was almost two months ago, which is more than enough time to allow the levels to rise to more normal levels, ruling that out as a cause.  Their first thoughts were that it was caused by my immunosuppressive drugs, or the Lymphoma had spread to my bone marrow, hence the biopsy. My white blood cell count has not been much of a problem before I started receiving chemo, obviously it’s a little on the low side but not to the point of the minimal level required. The dose of my immunosuppressive drugs is also as low possible to aid in curing the lymphoma. Because of this I personally thought there wasn’t much chance they were at fault. So I spent Monday afternoon and night shitting bricks that it had spread into my bone marrow.

Well the good news is there is currently no evidence that it has spread into my bone marrow which was a pretty big relief. There was also no evidence that my medication was the blame either which was also good. The bad thing is, the docs are now at even more of a loss as to what the cause is. My consultants’ current line of thought is that it may be caused by the Retixmab drug given as part of the chemo. You may have noticed there seems to be a recurring theme developing here that the medication I am being given is doing me just as much harm as good (remember, my immunosuppressive medication maybe the cause of the Lymphoma).  Apparently there have been some very rare cases (story of my medical life) that suggest the Retuximab can divert cell growth towards red cells and platelets, meaning less white cell growth. If this is the problem it should hopefully get better, but to speed things up I have to take daily injection of G-CSF and tablets to boost growth.  If it isn’t, well, back the drawing board…

Everything about the diagnosis and treatment for the lymphoma has been anything but straight forward. I’m a pretty unique case and neither my liver consultants nor hematology consultants have seen lymphoma as I have developed it before. It took them over 2 years to discover and diagnose it for a start, and it sometimes feels like they are making it up as they go along. In fact I’m pretty sure they are to a certain extent. Even the coming treatment is unknown as they are unsure whether they will be able to do the final part because my liver might not be able to cope with it. However let’s get the first three treatments out of the way before worrying about that!

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4 responses to “What’s stopping me from starting chemo?

  • Joe Fraser

    you are one tough mother f***er Allie…

  • Duncan Fraser

    PRETTY UNIQUE CASE!!

    That just about sums you up Allie!! Nothing straight forward for you ma loon.

    I can see you’re getting pretty frustrated with things but probably not half as much as your doctors, who I’ve no doubt are trying their best to figure things out and get started with your treatment. The one thing that’s never let you down is your outlook to everything you’ve been through, so hing in there and I’m sure it will all work out.

    Shirl says enjoying your musings and can’t wait till your back on the ward to get the next installments. Think she’s comparing the antics on your ward to those at her work.

    Thinking of you both.

    Dunc.

    • Al (Foo)

      Yeah I know it’s frustrating for docs too. Just fed up with the constant unknowns and waiting. Get pretty damn tiresome.

      Well with a bit of luck treatment will go ahead next week so that will be me in for a week or so at the very least. Hopefully be plenty going on I can write about!

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