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Recovering . . . so I am told

19 Aug

Well, this will be very brief.

I am home and have round the clock care. It is tough right now. I am in a lot of pain. Especially at night, I have no idea why. From a pain and nausea stand  point, this is NOT easier than chemo (some body told a little white lie about how surgery was a breeze compared to chemo . . . hmpf. But, then they had their surgery BEFORE chemo – before their immune system was shot from months of toxic chemicals coursing through your body. so I am sure they were telling the truth, i just thought it was a little amusing, hard to be amused these days, but I manage).

My body is so incredibly weak, unbelievable. can’t do the simplest things – cant open refrigerator door, can’t open much of anything for that matter. typing is kind of a killer too, but i can usually get in about 5 min w my left hand – rt hand is not cooperating. Will write more later when I am up to speed.

So here's the plan . . .

3 Aug

L&G Man 8-02-09After spending a day and a half on the phone with my oncologist’s office, UCLA and my insurance provider, I have decided the following: I will skip the Herceptin treatment this week (since my oncologist refuses to allow it, and since I can no longer spend my time and energy – of which I have little – on fighting with him any longer). I will then resume Herceptin next week – after surgery – with or without my oncologist’s permission.

UCLA called my oncologist to try to convince him to allow me to have Herceptin administered this week. As was expected, he did not budge. In fact, he did not take their call and instead his physician’s assistant took the call on his behalf. UCLA called me back and explained that they got no where with my oncologist.They asked his PA to get him on the phone, he was “unavailable”, so they asked her to ask him to consider their explanation of why I should stay on Herceptin . . . but, he said no to approving a Herceptin treatment for this week.

So, UCLA said that while it would not be their course of treatment to have me skip a dose, they said that skipping one week was not going to be harmful and that I could resume the week after surgery. They apparently were able to convince my oncologist to “consider” allowing me to resume Herceptin the week after surgery.

Personally, I believe that is just his getting UCLA, and me, to go away – and then he can tell me after surgery that he doesn’t feel I should resume Herceptin at that time. I know where he is going with this, such arrogance. He is a control freak that is for sure. He doesn’t feel it appropriate to follow what the word’s leading expert on Herceptin treatment advises. Nope, he is apparently smarter than the scientists who developed and have researched and tested this drug since 1991.

Here is what I have since figured out. The whole reason I am even having this fight about getting Herceptin the week before surgery is because at my treatment center they do not distinguish in their appointment records between a Herceptin Treatment and a chemotherapy treatment. Instead, each appointment is just listed as a “treatment” or, TX. On Thursday of last week, my nurse looked at my appointments and said “I don’t think you are supposed to come back in for more treatment”. I told her that it was my understanding that I was to come back. She then asked my oncologist if I should be coming in for another treatment the Thursday before surgery and he said no, that we would not know about continuing with more Chemo until after surgery.

(Although, if you have read my prior posting about additional chemo, UCLA does not administer additional chemo after surgery. Instead, I will continue Herceptin for a one year treatment (this would mean my last would be on April 2nd, 2010). Or, if there is still cancer after the pathology comes in from surgery, then they might decide to keep me on Herceptin longer than a year – but in no case would they have me go through additional chemo).

So, this whole thing is about my oncologist canceling what he thought was a chemotherapy round and not Herceptin. Now, I believe, so that he can not be wrong, he is trying to justify my not having a Herceptin treatment by claiming I have a risk of a heart problem – even though no one else agrees with him.

But, I can not keep focusing on this any longer. So my plan is to skip this week’s Herceptin treatment – since UCLA says it is safe to skip one and since the only way to not skip it would be to spend more than half a day, and thousands of dollars to get it done. Then I will “trust” that my oncologist was being honest when he said he would “consider allowing me to have the Herceptin the week after surgery.”  And, if he denies that, then I WILL go up to UCLA to have a single dose (not the three week dose) of Herceptin and hope that my oncologist will approve the dose for the following week (that would be the second week after surgery).  This is really all so ridiculous. My oncologist has gone from 1) having no problem with my continuing the Herceptin prior to and immediately following surgery to 2) changing his mind and canceling the treatment and then claiming that, no, he knew he was canceling Herceptin and that he did not think it was chemo he was canceling and that he wants me to delay resuming Herceptin until 4 weeks or more after surgery to 3) still no Herceptin the week of surgery, but probably two weeks after surgery if I feel better to 4) he will “consider” allowing me to resume Herceptin the week after surgery.

All of this just further underscores that he does not have a clue. It is all about covering his own butt and has nothing to do with me, the patient or what kind of care I am getting.

So, I will skip one Herceptin treatment and that is it.

And, I will get the heck out of dodge as soon as I am able to do so. But, given my choice of reconstruction surgeon – I don’t know if I can switch anytime soon because I need to work with her for some time. She will start the reconstruction on Friday, but I will need to see her for some time to have it completed. I will write another post on this later. She is really skilled and quite sought after as one of the leading reconstructivThe Boyse surgeons. Obviously, my main focus is on getting rid of my cancer. But, there doesn’t seem to be much doubt about that happening. I am supposed to survive this and be cured. I just want to have the best treatment available on all fronts. I feel that I do have that with the surgeons I have chosen. But, I do not feel that way (obviously) about my oncologist.

I will be filing a grievance with my insurance about my care. But, I will do it after surgery and after I have recovered. Or, maybe I will try to work on it today. I don’t know. I hate to spend more time on the negative, it not good for me.

I am going to go to Hoag today to get a jump start on my pre-op testing which was scheduled for tomorrow morning. But, since my cardiologist has scheduled a treadmill stress test for tomorrow, I am going to try to get some of the pre-op testing that my surgeons requested, out of the way today. Well, enough about this negative garbage . . . here are some pictures from yesterday’s family gathering for my Dad’s 80th birthday.

Please continue your prayers . . . I deeply appreciate it.


Oncologist said no, now what?

1 Aug

My oncologist said no to my request that I not go off of Herceptin. I had consulted with UCLA (where Herceptin was developed) and they told me that I should not be off of Herceptin for any period of time until I was done with treatment. But, my oncologist disagrees. Yesterday I demanded that he give me a medical reason for his decision to not follow UCLA’s protocol. His reason was that Herceptin poses a heart risk.

I have been on Herceptin since April 2nd. The heart risk is 1%. I have had two echocardiograms which have both come back as normal (a baseline before treatment and another two months into treatment which shows my heart function to be normal). I have had chest pains off and on throughout treatment. But, have not had chest pains in a month.

The 1% heart risk was shown in studies that involved women of all ages, all levels of health (including women with existing heart problems, high blood pressure etc.). They have done no study on 44 year old healthy women with no underlying heart problems to see if the risk to the heart from Herceptin is lower than on percent. But, the presumption would be (I would think) that my risk would be even lower than one percent.

I spent most of the day arguing with my oncologist’s physician’s assistant. Then she would take my argument back to my doctor, he would tell her what to tell me, then I would dispute that, and then she would go back to him, back to me, back to him and so forth – that was my entire day. He can’t even pick up the phone and speak with me directly.

She just kept telling me that with the risk that Herceptin could damage my heart that my oncologist would not allow me to continue it until one month after surgery – or longer – depending upon how long it took me to recover. His feeling is that there is an increased heart risk with surgery (the strain of surgery on the heart coupled with being on Herceptin). But, it is such a low risk. I told her – “look, we KNOW that I have cancer. We KNOW that it is aggressive. And, we KNOW that Herceptin is extremely effective in killing my cancer. So, rather than allow a possible, remote risk keep us from preventing a KNOWN risk (that of my cancer growing at a rapid rate if it is allowed to go unchecked by the very drug designed to kill it) I would rather follow what UCLA would do”. It seems foolish to do otherwise.”

And, I told her that he can’t have it both ways – two days ago I asked him to order a more comprehensive heart test (one that shows more of the heart function than an echocardiogram). He refused on the basis that I do not seem to have a heart problem. His exact words were that my heart function was normal and that he did not think that Herceptin was posing a problem for me.  Now, he cites a concern over Herceptin affecting my heart as a basis for not following protocol and taking me off of Herceptin. I have checked – this is generally only done in patients who are elderly or who have an existing heart problem.

I got nowhere yesterday. And, the poor PA, she was practically in tears at the end of the day. I felt bad for her, but it is her doctor that has put her in this position. She agreed that if it were her – in my shoes – that she would have the same concerns.

So now I am waiting to hear back from UCLA to see if they can fit me in (at my own cost – which could be at a significant cost) for a Herceptin treatment next week. Or, to find out from Dr. Hurvitz if it is wise to skip a treatment.

I can’t believe I am having this fight with my oncologist. He is so arrogant. First of all, he made his decision without ever consulting the appropriate protocol (this was clear from the way he answered me in the first place: “Hmm, well, I guess . . . “). Not once did he ever point to a reason or basis for his guessing.

And, the PA yesterday kept telling me about “this one patient who had trouble . . . ”

To which I told her I did not want or need to hear about anecdotal situations. That I wanted my medical treatment based upon studies and current protocols. UCLA is one of the top breast cancer centers in the world. They developed the drug Herceptin and know best how it works and how and when to administer it. Yet my bafoon of an oncologist is so arrogant that he thinks he should supplant his opinion over UCLA’s well documented, studied and proven protocols. I am livid about this. The fact that I have to spend my time arguing over something like this is so frustrating.

I am putting it aside for the weekend (although UCLA may get back to me via email over the weekend – the nurse practictioner that I spoke to at the end of the day said she would see if she could get an answer from Dr. Hurvitz about my getting in for treatment next week – she said she might hear back over the weekend and that she would let me know via email – amazing). So maybe I will get some good news before Monday. But, either way, she said she would get back to me no later than Monday. Time is kind of the essence here.

In my reading today, I have learned that there are Herceptin resistant HER2 cancers. They do not know why some HER2+ tumors are resistent to Herceptin. But, they are developing new drugs that show promise and may be available in one to three years. I am wondering (from my little bit of back ground in microbiology) if, like strains of bacteria can become resistant to antibiotics, that HER2+ tumors can become resistant. This is what concerns me about the time off of Herceptin – if I am off of it for five weeks, will this give any remaining cancer an opportunity to continue to grow – unchecked by the Herceptin – and worse yet, will this unchecked cancer have the potential to become Herceptin resistant? I am not trying to borrow trouble here, but, the reason I can survive this cancer IS because of Herceptin. Without it the recurrence and mortality rate of this cancer is very high. Not good. Herceptin increases survival by leaps and bounds.

I do not know if the Herceptin is working on my cancer – I can only presume that it is because the cancer has defnitely decreased significantly during treatment. But, it is not known yet how much cancer is remaining (if any) and I don’t know if that is due only to the chemotherapy or to a combinatino of both. The only way I will know is to be on Herceptin and be monitored. In all likelihood the Herceptin is working and will work. But, I do not want to be off of it for any appreciable time.

Well, that is enough on that for now. I will write more when I know more. Please say prayers for me on this. I really appreciate it.

L.

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!