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AAAARGH!!!

31 Jul

Okay, so I called Dr. Hurvitz and asked about being off of Herceptin for five weeks and I was told, no way. That I shouldn’t be off of the drug at all, for any period of time, during treatment. As I thought. So now how to fix it. My current oncologist says I can’t have any more Herceptin until a month after surgery and that I should not even have a dose (as would normally be scheduled) next week because it is too close to surgery.

Yet, there is no evidence that this is what should be done. I don’t get it.

Anyway, I was told by Dr. Hurvitz’ office that I should get a triple does next week (or at least a double dose) so that then I can wait on my next treatment to be either two weeks or three weeks after surgery respectively. She said that either way, I should not be off of Herceptin for any time – meaning I need to increase the dose in order to allow for “time off”. But, it really isn’t time off because there will be a double or triple dose of the drug in the interim that will cover that period of time.

I called my oncologist and left a message with his physician’s assistant. Hopefully I will get a call back soon. I am inclined to go ahead with a double dose today (this would then make it three doses between today and yesterday). And then I would get my next dose (which would be  a triple dose) in three weeks from yesterday. That would allow me two weeks without a Herceptin treatment after surgery. I should be able to get in for a treatment of Herceptin two weeks after surgery without too much trouble I would presume.

This is so frustrating. I should not have to spend my time babysitting my own oncologist – checking up on him and making sure he has made the right call. Fortunately, his behavior makes it painfully obvious that he doesn’t know what he is talking about – which I think is very fortunate for me – otherwise I would bounce along and not know any better and be at risk. (Actually, I would still be double checking no matter what, it is in my nature. But, that being said, if I were with Dr. Hurvitz, I would not feel the need to double check, she is fantastic and she is at the source – where Herceptin was developed and studied). But, my oncologist . . . aaargh! I mean the idea that there may be microscopic cancer cells in my body that per this moron’s “advice” would go unchecked by Herceptin for the next five weeks and given the possibility to grow and land somewhere else in my body and wreak havoc is just maddening. Okay, now I AM mad at him. This is pathetic.

So, I am waiting for his PA to call me back. Since it is already after 1:00 pm, it is doubtful that there will be time for me to come in for another dose of Herceptin today. So, maybe I can do it on Monday. I am just so frustrated by this guy. I am going to call my insurance provider right now and demand a case manager be assigned to my case. This is so ridiculous. And, just so you know, this is the ONLY protocol for Herceptin. The drug was developed and studied at UCLA. So they (the doctors at UCLA) absolutely know what the treatment should be and how often. There should be no dispute what so ever and there should be no departure from what is the known, verified, proven by clinical trials, protocol.

Please say some prayers I don’t have to battle this out with my oncologist. I don’t get the sense that he is open to hearing someone else’s opinion – that seems fairly obvious from the fact that he has not even checked to see what the protocol is supposed to be for Herceptin treatment.

I am so done with this guy.

As I expected . . . being my own doctor

31 Jul

As expected, my meeting with my oncologist was pretty much useless. Ten minutes into our meeting (after I had asked him about how soon I would resume the Herceptin after surgery (this is the wonder drug for HER2 + breast cancer) he said, “You’re HER2 – right?”

Holy crap! Okay, here’s the deal. I ONLY would be on Herceptin if I was HER2+. So, it doesn’t take a rocket scientist (or an oncologist) to figure this out. Unbelievable.

I swear, he makes it up as he goes along. Seriously. This is just basic information that anyone could get with a simple search online. Or, by watching a movie about the making of the drug.

So, not only did he not read my file before our meeting, he doesn’t even pay attention to what I am saying or even what he is saying during our meeting. It is like meeting with a teenager who has ADD (except that he can sit still). I am done being incensed about it or enraged. There is no room for those feelings a week before surgery. Instead, I have to do my own homework and find out what the heck it is that I should be doing.

These were the two main questions that I had for him – to which I have no answers – or at least no answers that I can trust:

1. How will the fact that I wake up in the middle of the night each night drenched in sweat affect the healing of the surgical incisions? (Ever since the chemo I started having night sweats. I wake up completely drenched, my clothes and bedding are soaking wet. It seems to dissipate slightly between each chemo. So, my hope is that it will stop soon – since I am not having any more chemo. But, right now, it is still happening). His answer: it won’t. My feeling?  That doesn’t make sense. It clearly can not be good if you are dripping wet every night and you have stitches. I don’t know, but, it just does not seem to make a lot of sense that being sopping wet every night is going to be good for my incisions to heal. Finally he just said that I needed to ask my surgeon all pre-surgical questions. Punt.

2. How soon will I resume the Herceptin treatments? (My normal  schedule would be to have it the Thursday after my surgery). His first answer was: “Hmm, well . . . I guess you could resume a week after surgery if you feel up to it”.  My feeling is I don’t want to skip a week of this drug – we know it kills microscopic cancer cells and since I am no longer getting chemo, I don’t want to be off of this drug until I am cancer free. And, my feeling is that I don’t want my oncologist to be guessing. Then he changed his answer and said that I needed to wait a month after surgery to resume the Herceptin. Then it was that he would see me in a month after surgery and we would talk about it.

I have no idea what he is basing his decision upon (or should I say indecision on). It does not give ma a lot of confidence when he changes his decision like that from one minute to the next. Especially when he didn’t consult with anyone to change his decision from one week to four. It is like he just kind of makes it up as he goes.

I was scheduled to have Herceptin next – after yesterday’s treatment – for next Thursday, August 6th (the day before my surgery). But, he decided that I should not have it the day before surgery. So now, if I follow his “plan”, I will be off of Herceptin for at least five weeks. I am not so happy about that.

So, now I have to get in touch with Dr. Hurvitz (hopefully I can reach her today) to find out what should be done Herceptin wise. It is my understanding that you do not want to be off of the drug for any significant period of time (until you have completed treatment of course, and then you no longer take Herceptin). After the chemotherapy, Herceptin treatments go from every week to once every three weeks (patients are given a triple does every three weeks). This is what the studies show is effective. And, it nice to not have to go in every week and get stuck in the arm.

I am guessing that I was probably supposed to start the every-three-week-triple-dose prior to surgery. Instead, he just wants me off of it for what will be a period of five weeks. I am not happy about that. They could have given me the triple dose yesterday. This way, I could wait three weeks for the next one. But, perhaps when I reach Dr. Hurvitz she will say that it is normal to be off of Herceptin during your recovery from surgery. But, I don’t know. And, since my oncologist clearly doesn’t know AND since he clearly doesn’t think he should place a call to someone who does know (this is obvious from his working it out during our meeting – it is like he is thinking out loud and exposing his ignorance all at the same time – he doesn’t base his decisions upon anything as far as I can tell).

I had other questions for him, but these were less critical and not really worth repeating here. I did ask him about whether I should get a port for the remaining Herceptin treatments (it is now clear that the topic of additional chemo is off the table – since if I were slated for more chemo a port would be required because I don’t have anymore chemo veins in my left arm. Taxotere is very hard on your veins so they do not want to keep putting it into the same vein – especially the smaller veins in your arm. This is why they opt for a port. But, since I was doing neo-adjuvant chemotherapy (chemo before surgery) I did not have a port. It was difficult, but we did it (my nurse and I) and so now the port is optional because Herceptin does not pose the issues that chemo drugs pose for veins). So I guess last week when I told the nurse that there was not a single clinical trial that had ever been done on HER2+ breast cancer where more than six rounds of chemo had been administered made its way back to my oncologist. I guess . . . or maybe he just forgot that he told me I was likely going to have additional chemo.

Oh, and the other change in his attitude was this: -last meeting he told me that there was no way that I could have a complete response to the chemo prior to surgery – meaning that there was no way that the chemo could have killed all of the cancer. But, when I told him that my surgeon could not feel a lump in my right breast during the physical exam she did last week (in fact, she said she could not tell the difference between my right breast – the one with cancer – and my left breast – which we believe does not have cancer) He told me, “Well hopefully we won’t find any cancer left when you get to surgery”.

I give up. Maybe he is bipolar. Yeah, Dr. Lisa has completed her diagnosis . . . he is bipolar.

It is a good thing that my surgeon could not detect any lump last week. But, I do have dense breast tissue and so that does make it harder to detect lumps – part of the reason I am in this situation in the first place – but that is another blog post.

Okay, well, enough of my frustrating meeting. I have work to do. I will get a hold of Dr. Hurvitz (hopefully right away) and find out what it is that I need to do.

I wish I could switch to her now. But, I can’t because I want to complete my surgery at Hoag with the surgeons I have already screened. Especially my reconstructions surgeon who is one of only a few that is trained in the latest types of reconstruction techniques.

Well, wish me luck with my homework!