Anthracycline Extravasation - 5 weeks later

In one of my recent posts I wrote about “the incident” with my port and left arm during my 3rd chemo infusion.  The last five weeks have been emotional hell and sometimes physical hell too. I have to say right off the start that it appears that things are going to be ok with my arm, but we cannot be 100% certain.

I finally got in to see a plastic surgeon last week. It took 4 weeks to get in and by now the damage has been done. I took information with me on Anthracycline Extravasation so he could learn about it if he didn’t already know (or wasn’t willing to do research). This is a very rare thing…it doesn’t happen to many people. I think it happens a lot less in those of us with ports and is more common in people who get chemo directly into their veins.

To say I was pissed off after the visit would be an understatement.  Husband, on the other hand, was ecstatic. It’s all how you look at the situation and I guess I had different expectations. I expected (or I guess I should say HOPED) that the doctor would have some compassion, be curious, be willing to do research, and not just write me off within moments. Is that too much to ask of a medical professional? Apparently so, because I got none of what I expected. Husband, on the other hand was happy that a medical professional said it looks like we’re out of the woods as far as serious injury. Wife (me) was pissed off that medical professional showed no compassion or interest and didn’t deal with my problem in a manner that fits my high standards.

Personally, I do not think I’m safe yet when it comes to this chemical burn that’s still affecting my left arm. I know how toxic Epirubicin (an Anthracycline) is to healthy tissue and I am still having problems with the area where the drug went into the tissue of my arm. Here’s what happened when we saw the plastic surgeon. He comes in and asks what happened, and then admits he has NEVER dealt with this and does not know ANYTHING about it. However, he then proceeds to feel it, says it is hot in temperature and then tells me that since I’m four weeks out that he THINKS it’s going to be ok and I’m doing all the right things.  I then tell him the oncology nurse’s and my oncologist’s opinion on getting the affected area wet - which could compromise the tissue. They feel I need to keep it dry at all costs, not expose it to sun and continue to avoid having a shower.  I ask his opinion on whether I can shower yet. He says “Yes. Why not?” WHAT???!!! You just told me you know NOTHING about it and then proceed to tell me you’re sure the area is going to be ok and that I can get it wet.  It was clear he didn’t give a rat’s ass about me, or about learning about this condition. I left, feeling extremely angry and disappointed, and carried those feelings with me for the rest of the day. Husband tried to “talk me down” but it didn’t work. I’m very particular with medical professionals and how they treat me. This was NOT satisfactory in my books.

I’m now toying with calling a plastic surgeon on my own and asking if they know anything about this or if they would be willing to do research on it so they can give me an INFORMED opinion. Of course I’ll likely have to pay for it out of my own pocket which I can’t afford. Perhaps I can get some opinions from others on the message boards of the Young Survival Coalition or Living Beyond Breast Cancer. There may be someone else out there who has had this happen to them and can give me some advice. I’ve done a lot of internet research but all I can find is information on how wonderful the new drug Totect is at treating it - and it’s NOT available or approved for use in Canada. What the hell?! Another problem I encounter when I search anthracycline extravasation is that really yucky pictures show up and they freak me out. So far, this drug is only available in the United States and Europe. If it had been approved for use here in Canada, perhaps I wouldn’t be having issues with my arm 5 weeks after the incident happened. Totect (dexrazoxane hydrochloride) has to be used within 6 hours of the extravasation. I got information on it at the Metastatic Breast Cancer Conference in Philadelphia in May, right before I started chemo. I knew about this issue BEFORE it even happened to me. But, because it’s not approved here in my country I can’t benefit from it. I realize it’s very expensive (over $14,000 for treatment of one person) but the costs of surgery and loss of use far outweigh $14,000. I tried to find out what kind of status it may have for getting approved in Canada but couldn’t find anything that related to extravasation. It’s so frustrating.

Even though I’m now 5 weeks past the leakage of the drug into my healthy tissue, I’m still having some issues with the affected area of my arm. It’s still reddish purple, it’s hot to the touch, it hurts to touch it, and I also get twinges of pain in my arm every day. The more I try to do, the worse it gets. Hanging laundry is still painful and I can’t open any of the cupboard doors in our trailer with my left arm. You don’t realize how much you use your left arm (when you’re right-handed!) until it causes you pain to try and use it. I am still icing it for 15 minutes every night just to try and relieve some pain.

Am I being dramatic? Am I expecting too much of a medical professional? Should I be more trusting of the plastic surgeon’s opinion? I can’t help how I FEEL, but I can’t let it go yet. I’m not satisfied that I’m out of the woods as far as serious injury to my arm goes. I have decided on my own that I am going to trust what the nurses at the cancer centre say. They’ve been working with these drugs for over 20 years and they know a hell of a lot more than the plastic surgeon does. The nurses have told me NOT to get the area wet yet and to keep it out of the sun. I’m going to follow what THEY say because I trust them. They’ve treated me for ten years and have gained my trust. As a matter of fact, I trust them with my life.

In the meantime I guess all I can do is what I have been doing….watching….and waiting. And getting more pissed off and frustrated with each day that passes.