Tag Archives: Herceptin

One plus two equals three . . .

31 Jul

Got a return phone call from my oncologist’s physician’s assistant. After much discussion she agreed that I probably should have had a triple dose of herceptin yesterday (this took about 45 minutes to achieve). So, she told me, we can’t undo that. To which I said but, we can have me come back in for a double dose today, right? . . . one . . . plus two . . . e  q  u  a l  s . . . three (that’s me talking really slowly). There may not be time to get it done today, so I told her I would be willing to do it on Monday.

So, now I am waiting for her to see if my oncologist will let me have another treatment of Herceptin – a double dose – so that I can have no period without Herceptin in my system. I told her that if he doesn’t allow me to do it that I was canceling my surgery for next week so that I can stay on the Herceptin. I certainly do not want to cancel my surgery and I am guessing he is not going to want to let me come in for a second dose of Herceptin. This is so ridiculous.

And, as if it were to prepare me for his answer being no, she said just so you know, people miss their Herceptin treatments, I mean things come up, they go on vacations, things happen and they have to cancel their treatment and it is not a life and death situation if they miss a treatment”. I told her that I would never miss a treatment and she agreed – said she knew that I would not, that she knows me. So why are we even having this discussion. I feel bad for her – having to deal with me. Not because I am out of line – but instead, because the doctor she works for has created the situation that now causes me to be on her back. It isn’t pleasant. And, this is not the way I should have to spend my time right now, battling it out to simply have the treatment that I am supposed to have.

I am thinking that I am just going to go show up and see if I can get the double dose today, I would need to start it by three pm to have it done by the time they close. I don’t know what to do. I could do it on Monday, maybe just go in the morning.

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!

Seeing my oncologist today . . .

30 Jul

I spoke with my mentor MJ yesterday. She has been through breast cancer and has had much of the treatment that I have had and will have to have – sans the radiation. She said that I should insist on a Mugga test (a test of heart function) prior to surgery. I am slated only to have an EKG prior to surgery. MJ said that with the drugs that I have been on (chemotherapy and the Herceptin) that I should definitely have this mugga test to make sure that my heart has not been damaged by the drugs. In particular, she said that because I went into anaphylactic shock from the time that Taxotere was administered without steroids, that I should insist on getting a mugga test to rule out damage to the heart after that event. I agree. However, I don’t know that I will get any doctor to agree. But, we shall see.

I see my oncologist today (the one that doesn’t read my file). I cancelled our last appointment because I saw it as pointless and I had already seen the specialist up at UCLA the day before. My oncologist was pretty surprised by my canceling. But, I just could not meet with him. I felt my health depended upon my NOT meeting with him. He always brings me down with his ignorance. He really does not have a clue about the kind of cancer I have. He didn’t even know which chemo drugs I was on or that I was on Herceptin – or at least he didn’t know the significance of my being on Herceptin.  Instead, he talked about the possibility that I could get brain cancer because Herceptin does not reach the brain.

What a moron. I mean what is the point in telling me that? When I told the specialist up at UCLA what he had said, she was angry. She said that it was ridiculous for him to put that on the table and that the chances of that happening were very, very low. And, she said if it were to occur, that there was a drug for that too that is like Herceptin but that reaches the brain. (Dr. Doom instead told me that I would have to have brain surgery – – good Lord, what an idiot). I mean that is so pointless to talk about. It’s like saying, “You know if you trip and fall you might break your hip. You might get arthritis one day and have a lot of pain in your hip. Then you might have to have hip replacement surgery. Then you might have complications from the surgery and then . . . ”

I mean really, what is the point in telling me about some remote possibility and then describing in detail the treatment for that remote possibility and how problematic it is. What an idiot. The specialist up at UCLA was so upset by his telling me that. Her exact words were: “You need to get out of there, he doesn’t know what he is doing.”

She did, however, like my surgeon. She knows her, has a lot of confidence in her. So that is good. I like both of my surgeons very much. I have two surgeons, the surgeon who will remove my cancer and my reconstructive surgeon. They are both excellent.

I feel very lucky to have the reconstructive plastic surgeon that I have. She does amazing work. She is not part of my network. But, I was able to get her anyway (thankfully my insurance agreed to it). She is the only surgeon at Hoag (and one of a very few surgeons around) trained in a type of microsurgery for breast reconstruction. It is really amazing what they can now do. Unbelievable. So, I feel very lucky in that regard.

I have to say that when I was first diagnosed, the last thing I thought about was reconstruction. I just wanted them to go in and get it out. All I could think about was surviving. And, of course, that is my main focus. There is not much point in having pretty breasts or breasts at all if I still have cancer. So, it is all about becoming cancer free. And I will. But, I realize now that part of surviving is having great reconstruction results. So it is great to know that I have a top reconstructive surgeon. She specializes in reconstruction (where as most breast reconstruction surgeons that people get are also cosmetic surgeons and handle everything from botox to liposuction). I am grateful to have my surgeon.

So, I am bracing myself for another meeting with Dr. Doom. Even though I know he doesn’t really have a clue about my cancer or the significance of my getting Herceptin (the wonder drug for my kind of breast cancer), I am still affected by what he says. The last time I had a meeting with him I left the visit in tears. I hate to admit that this jerk – who has no time to read my file and argued with me about how many chemos I had been through – could reduce me to tears, but he did. It was a combination of the fact that he had not read my file, that I spent the entire time correcting him about very basic things in my treatment and diagnosis and that he told me that there was no way that I could have a complete response to chemotherapy. (A complete response means that the chemotherapy killed all of the cancer). As soon as he told me that, I knew he was wrong. Who is he God? He can not know that.

I knew that I should not give any credence to what he said that day because he is simply ignorant (ignorant about my type of cancer and ignorant – by choice – about me). But, even though I know this, it was impossible for me not to attach some significance to what he said – in spite of the fact that he was wrong about so much during our meeting. Still, it was so hard not to think that maybe he was right. And, it was just so upsetting to realize that he is not invested in my care at all. That felt horrible. But, that is why I am seeing the specialist up at UCLA. She says I am having a great response to the treatment so far. My surgeon also says that I am having a great response. In fact, she said she can not feel the cancer any longer and she thinks there is a good chance that we will find that I have had a complete response.

I am going to let him have it today if it becomes clear to me that he has not read my file. I should bring a tape recorder to tape that discussion. Maybe he will surprise me and he will have read it. I really hope so because it is so depressing to see him and to go through that – learning that he hasn’t bothered to prepare for our meeting and that he clearly has no idea what is going on with me.

I know he finds me difficult because I have expectations. I come in with my legal pad (I’m sure he loves that) and all of my questions and well, he doesn’t care for that I don’t think. But, he works for me. At least he is supposed to.

Well, hopefully the meeting goes well. Maybe he will do better after my canceling our last appointment. He didn’t get paid that day. He was really perplexed by my canceling. I was in the office for my Herceptin treatment and I told the nurse I didn’t want to meet with him. I told her why (that he doesn’t read my file and that he depresses me). So she told him that I didn’t have any questions and that I didn’t feel that I needed to meet with him that day. He came over and said, “So you don’t want to see me today, I am hurt”. I guess now he is a comedian. He then said that he had to see me before surgery and actually scheduled today’s appointment himself – that may be the most work he has done on my case to date – scheduling an appointment. 🙂

I have to think I am the first patient who was already there at the doctors office (had to be there for Herceptin) and told him to go away basically. I mean, I had to sit there for treatment anyway, so it wasn’t like I was saving time by not meeting with him or getting to go home early because I cancelled. Instead, it was a clear message that I did not want to see him. So maybe this time he will prepare for our meeting.

Well, I guess I am being pretty harsh. I do have to give him credit for suggesting that I take Claritin for the bone pain that is caused by Neulasta (the drug I get to boost white blood cell production). The Claritin really worked. But, he gets no points for his bedside manner or his lack of preparedness for our meetings.

Wish me luck with this guy today. I just can’t let him take me down. So, I won’t. In one ear out the other.

Poor Molly . . .

23 Jul

This is my loyal “pup” Molly, she’s 15 years old. Molly SmilingPoor Molly, she is getting kind of tired of me going through Chemo. She’s not too happy. Resists going for walks unless I am going with her. When someone comes to walk her, she tries to stay here with me, then reluctantly goes ahead, stopping and looking back for me. So sweet, but it makes me feel bad.

I am very tired and weak after this last chemo round. But, I am definitely on the mend. Oh, not that it really matters that much, but my hair started growing back after the fourth chemo, so maybe I am getting a head start on a head of hair. 🙂

Thank you to everyone for your continued prayers and support!

Hard Day's Night . . .

23 Jul

This last round was by far the worst.  But, I am definitely on the other side of it now, thank God. I am tired, weak and worn out, but coming back.  

Yesterday was a tour of Hoag facilities. Tuesday night I had been pretty dizzy and woke up feeling the same way yesterday morning. It seemed like it was from dehydration. But, I also I had a fever so that was a concern too. With chemotherapy, you can end up in what is called a neutropenic fever or shock. This is caused by low white blood count and is very dangerous. The trouble is, you never know whether the fever is just from an infection or if it is from your white count being so low that you are in a fever from that.  So I went in to the doctor yesterday. They decided to give me intravenous fluids, it took a couple of hours and well, it definitely seemed to do the trick (the dizziness went away, blood pressure came back up, it had been a little low).

So after a quick trip to Mother’s Market (it is next door to the Hoag Health Center) I went home and went back to bed.

Then I woke up with a fever and felt worse than before. The whole point of my going into the doctor’s yesterday was to avoid having to make a trip to the ER after hours in case I didn’t improve on my own. So, I was pretty disappointed that I wasn’t able to save myself the ER trip. I tried to get my fever down last night, but wasn’t able to. So, I called my doctor and he made me go into the ER. It was the last thing that I wanted to do – be around all those germs when I am at my lowest point immune system wise. And the only reason why I had to do this was to get a simple blood test to confirm my white blood count. If it was normal, then my fever was simply from an infection and I would be put on an antibiotic. If it was low, then the fever was a dangerous one.

So I get to the ER and it is packed with people. The front desk person tells me that there are no beds in the ER (yet) and that there are no beds in the hospital – that there are 13 people in the ER waiting to be admitted to the hospital, but because there were no beds available, they were taking up space in the ER. So, it was going to be a long night. Meanwhile, I was told that I could wait outside (to avoid exposure) and they would come and get me when it was my turn.

I waited outside for a while and then decided (and I know my doctor would be mad at me, but) that I was going home. I did the math and figured by the time I would even have blood results and get care based upon those blood results that my own doctor’s office would almost be open. So, what was the point.

So I left (without signing the release of liability the hospital wanted me to sign). They were none too happy about that. I was just not going to stand around in germville any longer.

So I went home. And, to my delight, my fever went down to normal, I started taking a Z-Pack (antibiotics) and went to bed.  So glad that I decided to leave, it would have been a miserable night.  Besides, I was definitely not up for another IV in the same day.

Today I have a bit of a busy day medical wise. I have my Herceptin treatment this am. That usually takes about an hour and a half. I get this done in the same place where I HAD (woo-hoo) my chemos. And then I see my reconstruction surgeon this afternoon.  The key is to be alert enough for the afternoon appointment (I am on Benadryl during the Herceptin treatment and so that kind of wipes me out for a while). A friend of mine is taking me to my appointment and she will come in with me and take notes in case I am not so clear myself.

I feel SO much better, even in the last few minutes while writing this post. Wow. So glad. Thank you to everyone who has been helping me and praying for me and thinking of me. I now really, really feel like I am done with chemo!

Good morning no more chemo!

17 Jul

Yesterday was my last round of chemo.  This has been quite a ride (and will still be so for the next several days getting through what I not so affectionately call my “chemo weekend” . . . especially since “chemo weekend” really lasts for about ten days now).  So I will likely feel pretty crummy physically for the next several days.  But, I am definitely celebrating the fact that yesterday I endured the very last 8 1/2 hour intravenous cocktail. It really is such a long day. And, while I never really paid attention to it, I see two sets of chemo patients come and go each time I have a treatment.  The morning group who come in about 9:00 am (an hour after I get started) and the afternoon group who come in at about 2:00 and many of the afternoon chemo patients STILL get out of there before me.  Everyone makes fun of me for bringing in so much stuff into the treatment room . . . “Hey Lisa, ya movin into this place?” to which my nurse defends me and says if your chemo took 8 or 9 hours you’d be packing in some stuff too.  Then the room get’s a little quieter after that.

I was in the group treatment room yesterday so I was ribbed all day. I have made a lot of friends in this room. For the chemo days, I have always been in the semi private room because that is where you can have a family member or friend sit with you. This has been my nurses preferred placement for me so that I can be watched for any reactions as I am highly allergic to two of the medications that I have during the chemo. But, yesterday, there was a woman in for treatment who was very sick and so she needed to be isolated from the rest of us.  Hence, I was put in the group treatment room. But, I am in the group treatment on all of the other Thursdays for my weekly Herceptin treatment.  So I have met many cancer patients in this room since April 2nd when my treatment first began. There is an instant bond that develops. I have met the sons and daughters of many of these patients (most patients are much older than me, although there are a few that are closer to my age, I am generally the youngest in the room). We have had some great conversations. Barbara, she is probably in her late 60s maybe 70 – she is a huge movie buff and when I see her it is like sitting next to Siskel and Egbert. She has good taste in films.  I left yesterday with a few good rental recommendations for my weekend.

And there was Cathy (or Chick as her friends call her – I get to call her Chick) who I miss a lot. I have sat next to her for nearly every chemo round. She was one chemo round ahead of me when I started so she graduated last month.  I miss her. But, I will talk to her soon. Her daughter would often come and stay in the room with us. And, I owe her daughter my life – literally.  She just happens to be a cancer nurse and she walked in right at the moment I stopped breathing during the  second chemo round. She immediately new what was wrong, got a nurse in who then took care of me and got me back to breathing.  I was worried that something like that might happen yesterday (another severe reaction). But, everything went smoothly and for the first time I got out of there at 4:3o ish.  It was nice.

There are about six or seven reclining chairs all in a semi-circle – perfect for joking around, and being made fun of when you sleep and snore loudly.  Most everyone is in good spirits. There is also a tv that we can all see. Fortunately I lucked out as no one asked to have it turned on all day. I have  grown to hate day time television.  The chemo was bad enough, but being subjected to soap operas at a very high volume just takes me over the edge a bit.

I will be in this room pretty often as I continue my weekly herceptin treatments (these take only about an hour and a half and do not cause any bad reactions for me, not physcial symptoms, pain or hair loss or any of those things – herceptin is the mon-clonal antibody that I will get for a year). Eventually (after surgery, I believe) I will start going in only every three weeks for this treatment. It will be a triple dose, so it will take about three times as long to get, but I will only have to do it once every three weeks. I am very excited about that. And, as I said before, there are no side affects that I feel from taking this drug.

So, I have reached a huge landmark in my treatment. I have been told by many that have gone through chemotherapy, surgery and radiation, that of all of it, the chemotherapy was by far the worst part of their cancer treatment.  So, I am quite relieved to be done with chemotherapy.  What a journey. I can’t believe how fast it has gone by.  It has been three and a half months of chemo now.  And I am done!

I am currently scheduled to have surgery on August 7th. It is coming up quick and I have a lot to do to get ready for it (including exercise and strengthening core muscles to improve recovery from the surgery). Since I will be having a bi-lateral mastectomy there will be a time that I can not really use my arms to lift myself up out of bed, or hold onto the railing on my stairs. So, it was suggested that I work on my stomach muscles to make it a bit easier to get up and down.  It should not be for too long. But, just in case, I am really going to work hard on that area in the coming weeks.  Hopefully there will be time to improve this area.

So, today I am feeling great – the excited to be done with the 8 plus hour days of chemo and to know that whatever pain or discomfort I experience this week will be my last chemo pain/discomfort.  Thank God, it is over 🙂

And, thank you to everyone who is praying for me and sending out good thoughts my way!  Please continue praying for me as my battle is not over yet. But, I am getting through this and it feels so good to be done with this phase!

Another Herceptin Treatment done

29 May

Today was my every Thursday Heceptin treatment.  My very good friend Sandy took me today and stayed with me during the treatment (thank you so much Sandy). The treatment went fine. Although I didn’t have my regular nurse – the one who knows how sensitive I am to the treatments and takes such good care to keep me upright – as in breathing – breathing is such a good thing 🙂

For whatever reason, I am pretty sensitive to both the chemo and to the Herceptin.  It seems partly due to the rate of infusion – how many CCs per hour are administered. Most patients can tolerate 550 to 600 ccs per hour.  Me, I start out at  about 50 and then they build me up slowly to about 300.  Any higher and I start to have pretty bad reactions.  So, that is just the way my body is I guess.  That means my treatments take twice as long and the nurses can’t leave until I am done.  I am sure they just love me.

Anyway, it went fine today (in spite of the fact that I didn’t have the nurse that I love — Dawn – she is so great).  When Dawn is not there, I have learned that I have to insist that things be done a certain way – otherwise, they (the nurses) do what they normally do and well, for me, it just doesn’t work too well.

But, that is part of why it is so helpful to have someone with me because if symptoms do arise they can get the nurse quickly.

My second chemo (this was on April 23rd) was a near disaster.  I had been told the wrong pre-medications to take the day preceding chemo (having the right medications the day before is really critical for any chemotherapy patient, but is particularly critical for someone who has any higher sensitivity to the chemo.  I am pretty allergic to one of the drugs that I get in chemo, it is called Taxotere and it is pretty nasty stuff. But, with the right pre-medications and monitoring, I can tolerate it).

But, on the second chemo I was given the wrong pre-medications (I think I was confused with another patient – this was while under the care of my former oncologist, the one I fired).  As a result, I went into anaphylactic shock during the Taxotere infusion.  I could not breathe at all, it was absoloutely horrifying. But, the nurses (Dawn in particular) acted really fast. Also, I was fortunate enough to have someone walk by at the exact right moment – she is the daughter of one of my fellow breast cancer patients.  Her name is Lisa and she just happens to be a cancer nurse and was there visiting her mom.

She saw me gasping for air and that I was apparently bright red – so she ran and got the nurses and I was taken care of.  I don’t even want to think about what would have happened if she had not walked in at that exact moment.  With anaphylactic shock your body just shuts down, first your respiratory system, then your arteries and organs. It’s painful and well, just not a good thing.  The very maddening thing about it (although I just don’t focus on being mad much) is that it was completely avoidable.  It should not have happened. The doctor made a mistake, a big one.

I will deal with him at some point simply because I can’t let this happen to someone else.

I recovered completely from this, but not without first having to go to the hospital.  My hospital trip was during the very beginning of the whole swine flu thing – so they were pretty crazy about my wearing a mask and keeping me isolated in case my immune system was compromised by the chemo.

It all worked out. I am so glad that I switched oncologists and so glad that the third chemotherapy round (which was under my new oncologist’s care) went so well.  What a relief. So things are going much better now.

Treatment Plan

26 May

Well, this is the crummy part.  I can not sleep.  It is three in the morning and I still can’t get any sleep.  Last night was the same, so I am going on two days without more than an hour or two of sleep.  And I was doing so well there for a while.

I will get back on track.  Hopefully tomorrow will be better.

So, since I am still awake, I might as well write.

Treatment Plan: So here is the treatment plan that I was given.  I am to have a total of six chemotherapy rounds.  In addition to the chemo, I am also on a targeted therapy called Herceptin.  Herceptin works on HER2+ cancer (the kind I have).  It is an amazing drug and I am so grateful that Dr. Slamon at UCLA developed it.  He has saved the lives of so many women, curing a type of breast cancer that once was really not curable. The chemo will be followed by surgery and then, most likely radiation. Reconstruction will fit in there somewhere – but, I am still doing research, interviewing plastic surgeons and learning about the different reconstruction options (especially given the likelihood that I will have radiation as part of my treatment).

Neo-adjuvant Treatment: When chemo is given prior to surgery it is called neo-adjuvant.  In some cases chemotherapy precedes surgery in order to shrink the cancer so that surgery can even be done.  That is not the case with me.  My tumors are small and as a result I could have surgery at any time.  However, the reason to do neo-adjuvant chemotherapy in my case is to see if we can watch the cancer shrink.

The advantage of doing chemotherapy prior to surgery is that we can watch and see that the chemotherapy is actually working.  If I were to have surgery first, followed by chemotherapy later, then there would really be no way of knowing if the chemotherapy was effective with my cancer because we could not watch it shrink during chemo since it would already be removed.

This is significant for me and was a major reason why I chose to do the chemotherapy first. Everyone responds differently to treatment. And while it is more likely that the chemotherapy will work, I will have a greater peace of mind if I can know for sure.

For me it is all about making sure that I do everything I can to fight this disease now, stop it in its tracks and prevent it from coming back.  If we can watch the cancer shrink, then we know that the chemo is working on my cancer and that it is then also killing the microscopic cancer cells that are floating around in my body (that without successful treatment, would come back).  The kind of cancer I have – invasive breast cancer, that is HER2+, has a very high reoccurrence rate.  That is why the treatment is so aggressive even though my tumors are very small.  By adding radiation to my treatment plan, I can further reduce the chance of having a reoccurrence.

The other possible (hopeful advantage of having chemotherapy first is that I could have what they call a “complete response”.  About 40% of women with the kind of cancer that I have, who undergo the kind of neo-adjuvant therapy that I am doing, experience a what is called a “complete response” – meaning that prior to surgery the cancer is eliminated.

If there is a complete response, then when I have surgery the surgeon is removing dead cancer.  This would be best. It doesn’t change the need for surgery. But, it makes the surgery easier because there is no risk of infecting healthy breast tissue with cancer because the cancer is dead.  So, that is what we are hoping for.

I am nervous about the upcoming breast MRI. The specialist I met with at UCLA said she would not do one until I was done with all six chemotherapy rounds. She said that she would not interrupt the chemotherapy. When I asked her what if I was not one of the 40% that has a complete response prior to surgery, she said “You’ll be on Herceptin for a year, what are you worried about?”  Um, dying . . . that’s what I am worried about.

It was good to hear that she was so confident. But, unfortunately I don’t get that kind of reassurance from my actual team.  Instead, I am told that I have a good prognosis. But, I am also told that the kind of cancer I have has the highest reoccurrence rate.  I am also told that some patients come back with brain cancer.  It’s not all rosy sounding.  Well, okay, none of it is actually.  But, I cope and I am grateful, so grateful that there is a drug that targets the kind of cancer that I have. Not all women respond to the treatment, but hopefully I will.

My Own Treatment Plan: In addition to the treatment plan that my oncologist and surgeon have put together, I have also put together my own “treatment plan” that includes a very changed diet and as much exercise as I can.

From the moment I was diagnosed I changed my diet. I considered myself pretty healthy before, even was a vegetarian for a number of years (although not most recently). But, after being diagnosed with breast cancer, I immediately changed my diet.  I knew that my cancer was hormone responsive – meaning that in the presence of hormones, my cancer flourishes apparently.  So, I decided to eliminate sources of hormones in my diet.  I had also heard that sugar feeds cancer.  I got a lot of information in the beginning (some of it pretty wacky) that made me pretty crazy.  But, after doing a lot of my own research I chose to make changes that to me make sense.

I don’t know about whether sugar feeds cancer or not.  But, I don’t get a lot of sugar anyway, so that wasn’t a big issue for me.

I have eliminated all dairy products and all meat except for some chicken and fish.  Because my cancer grows with hormones, I have chosen not to get any (at least as little as possible) in my diet.  I was told to avoid soy for the same reason because it is a plant based estrogen and would only encourage the growth of my cancer.

I have gone to a nearly completely organic diet.  I do go out to eat and enjoy that still. But, I make choices that are lower in risk – for example potatoes are very high on the pesticide index – so these are pretty bad unless organic.  But, broccoli, avocado and other vegetables and fruits are on the low end of the pesticide index and so are pretty safe to eat even if not organic.

No doctor has told me that I need to go organic.  But, for me it makes sense.  And, my doctors can’t believe how well I am doing – my white blood count has never left a normal range (normal, as in a normal person who is not going through chemotherapy) and my red blood count (something that typically gets low, causing anemia and pretty bad fatigue in chemo patients) is also within normal range.  I think this is due to my diet and exercise (maybe more from the exercise, I don’t know).  All I know is that so far, I am doing really well with the treatments (except of course for the time my first oncologist – who has since been fired – tried to kill me . . . I will save that for another separate post).

I have also eliminated caffeine.  I was told that caffeine was okay.  But, it is not.  I stopped having coffee months ago. But, only just yesterday found out that the drug Herceptin does not interact well with caffeine – that caffeine reduces the effectiveness of Herceptin. This was in a study, not even all that recent.  Yet, my doctors were not aware of this at all.  Amazing. There must be so much to keep track of I guess, especially if you are a doctor treating many different types of cancers.

Still, I am just so glad that I had eliminated caffeine. I would have been devastated to learn that caffeine reduces the effectiveness of Herceptin if I were still drinking coffee. I wish I could tell every woman that is getting Herceptin treatments about the bad interaction with caffeine.

In addition to diet, I have begun an exercise plan too.  Recent studies show that exercise during chemotherapy increases T cells and reduces the rate of anemia (caused by a reduction in red blood cells).  70% of chemotherapy patients get anemia.  But, for some reason those that exercise regularly throughout their treatment, have a lower rate of anemia. So, I am trying to prevent anemia by getting as much exercise as I can.

Obviously some days are simply not an option. But, I try to get in a one mile walk every day.  I was able to keep that up this past week. I plan on going to the gym next week (after the MRI and before my next chemo on June 4th). Assuming, of course, that the MRI results are good and that I am then still going ahead with the fourth chemo round.

Well, I think I have had enough, it is 3:40 am.  Maybe now I will be able to get some sleep.