Friday, July 20, 2012

Giving my Veins a Rest. I've seen the Needle and the Damage Done

Ever since my low platelets appeared on the scene six years ago in my CLL battles, there has been very few weeks that I have not been poked or infused in one arm or the other often several times.

Except for the time of my transplant when I was having blood drawn four times a day and might have three or four infusions all hooked up at the same time, I have not a PICC (peripherally inserted central catheter) and I have never had a "port".

Here are my tips that I use for protecting my precious veins.

1: Showing up for any and all blood tests or cancer center appointments well hydrated and warm.
2: Regularly working my arms muscles with weights.
3: Applying pressure quickly and firmly for a few minutes when the the IV is withdrawn.
4: Following that with the compressive dressing COBAN for about another 30 minutes.
5: Most importantly asking for an experienced infusion nurse who gets no more than two tries before letting someone else have a go.

Over the last six years, I have received multiple therapies, at one time three infusions a week, and over the three months in Columbus for the Ibrutinib trial at OSU I got weekly ofatumumab infusions eight times. Add to that too many IVs for the contrast for my CT scans and too many blood draws, and it is a wonder my arms don't make look like those of a heroin addict.

This is another big advantage of the new small molecules- they can pass through the gut undamaged, so they are bioavailable orally. No more IVs. This isn't just more convenient. It is safer. It passes the control of our life saving meds and in some way of our cancer itself from the IV nurse and back to ourselves and our medicine cabinet at home.

My most constant companion over the last six years has not been rituximab or steroids, but the very precious IVIG for my ITP. When my platelet count dropped again the last time, Dr. Kipps recommended that I restart my IVIG but that this time I receive less each dose but get it more frequently, every two weeks, and I dutifully did just that for years. IVs every two weeks! I am now trying to stretch out that two week interval, not that I don't just love spending hours at the friendly infusion center more than twice a month. Not that I don't love having to plan every trip or vacation or appointment around the scheduling of my life saving protein elixir dripping into my veins. I am happy that it has worked so well and that I have access to such a precious and expensive product on a predictable basis. I am truly dependent on the kindness of strangers whose pooled blood product regularly coats my platelets and prevents their premature and dangerous destruction. It is true at so many levels that I am living in gratitude.

Today it was almost four weeks since any needles have pieced my skin, and my platelet counts remained stellar. My Hgb has climbed a bit (13.2), my white blood cells are prefect (8.2, diff pending), and my platelets are 363,000, a very safe and happy number.

And my veins are loving the time off.

Maybe it's a benefit of all the ofatumumab. Makes sense since rituximab helps ITP and they both target CD20+ cells. Maybe it is the ibrutinib reducing my disease burden, the driver of my distorted immune function, or maybe it is some direct effect the BTK blockage has on auto-immune function.

Once a month IVIG. Two more doses of ofatumumab.

A lifetime of cancer controlling pills?

This is a fine vision of my future.

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5 Comments:

Anonymous Anonymous said...

Brian,
Do you see ibutinib as being safe and effective over the very long term? Obviously, no results are in on that yet, but as a doctor and direct recipient and more than a vested interest in how long one can be on PCI - what is your opinion?

Congrats on being needle-free for now!

Heléne

July 20, 2012 at 7:30 PM  
Anonymous Anonymous said...

Great to hear Brian - thanks for the update and the advise for looking after our veins (no one has mentioned any of that to me so all very useful given the constant blood draws I'm having). I saw Constantine Tam here in Melbourne last week - he's responsible for bringing Ibrutinib for trials to Australia and is very excited about it and optimistic about what it might achieve for us all. I am now definitely SLL rather than CLL and, despite it being the same disease, it won't be tested on SLL patients here (although it is in the US). Thankfully he thinks it will be a long time before I need treatment. My counts are rising, as are my nodes, (I think I'll end up very bulky) but no doubling in the six months since diagnosis so thankfully it is slow at this stage. Thanks for your blogging I really reading your comments. Cheers, Deborah

July 20, 2012 at 7:31 PM  
Anonymous Anonymous said...

Dr Brian

Your blogs are always a great read

Thanks for sharing with us

Gary

July 21, 2012 at 12:47 PM  
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