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Just a quick recap of the past year – for those of you that are new :)

29 Jan

Hi again,

I thought I would put together a recap of the past year for those of you who are new to my blog. So here it is:

How it all began: I had a mammogram last year in January, it came back with “suspicious” results (indicators of a tumor). Just so all you women out there know I NEVER felt a lump and neither did any doctor ever feel a lump in my breast – so please, please, please get a mammogram, and preferably, get an MRI – even if you have to pay out of pocket for it – it can not only save your life, but can save you an incredible amount of misery by just catching it very early).

After the “suspicious” mammogram, I was sent out for another one, called a “compression” view mammogram to zero in on the suspicious area. This was done a few weeks after the first mammogram. The results of this one came a few weeks later and indicated the need for a biopsy – that’s when I knew in my gut that I had cancer. It just made too much sense – I had not had the same energy level for a while, although otherwise healthy, I just didn’t seem to rebound from a long day or long week of work the way I did in the past. Anyway, had the biopsy and waited several days and then got the news.

The news was simply that I had cancer and that it was an aggressive type. I got the news on a Friday – late in the afternoon. So, it was a long weekend of worrying about how bad it was going to be, could I survive it, etc.

Then lots of tests to determine whether the cancer had spread and determining the specific type of cancer. Fortunately, the cancer did not appear to have spread to any organs. Although it had spread to a lymph node – which meant maybe that is where it was stopped – the lymph nodes having done their job (that is my hope, of course) or – the chance that the cancer left my breast and went elsewhere. There is no evidence that my lymph nodes did not do their job –  all of the tests done indicated that the cancer had not traveled elsewhere. This was great news. There is always the risk that something microscopic made it’s way out – so to this day, I hope and pray that it was caught in time and nothing escaped the lymph node area. So far there is no reason to think that it went anywhere else. (It is also why I chose to go ahead and have radiation treatment, to radiate the lymph nodes that I still have – just in case – anyway – there is more on that aspect under “For Cancer Patients”.

After about a month of learning the results of tests, researching the various treatment options, second opinions, etc., I started chemotherapy on April 2nd, 2009. I finished chemotherapy on July 16 and the had surgery on August 7, 2009. After surgery (which went well) I was to start radiation treatments. However, radiation was delayed for sometime due to post surgery complications and two hospitalizations for infections (since I had chemo prior to surgery, my immune system was pretty taxed and the recovery from surgery was much slower than anticipated).

I started radiation at the end of October and finished on December 22nd. Radiation really zapped me (no pun intended)  but, I had never felt so weak in my life – couldn’t open a bottle of water by myself – still can’t do that actually, but I am a lot stronger than I was back then.

I spent most days in bed the entire day, except to go to doctor appointments – which are and were pretty frequent.

Now I am done with the aggressive parts of my cancer treatment (chemo and radiation) and am on the mend from the cancer. I am still pretty tired and have some limitations. But, I am getting there.

I still have some hurdles in front of me – two more surgeries and the continuation of my Herceptin treatments (which are every 21 days and expected to go through April or May). These treatments are given through an IV infusion and take a few hours or so to get through. I usually have the treatment on a Thursday or a Friday so that I can use the weekend to recover. It is nothing like chemotherapy in terms of the side effects. But, it does put me out for the weekend usually, so I have to pretty much just rest after that treatment. I get a lot of bone aches, fevers, and basically, I just don’t feel well. But, it goes away and I recover from it within a few days.

I am supposed to have all of the same scans that were run last year to determine if the cancer had spread. This makes me nervous, but, it is what it is. I have to know and it is now my lot I guess.  These tests will be run sometime in May 2010 after I complete the Herceptin treatment.

Today is a so-so day. I didn’t get a lot of sleep and haven’t accomplished much – it is just harder on some days. Especially if the day was preceded by a total lack of sleep 🙂

Anyway, this should pretty much put you up to date if you are new to this blog. Also, I added a category called Pictures (it is on the left side of my blog). What I have done is I have tried to put past blog postings that include photos in that category so that you can see pictures – if you are interested). I will also continue to categorize any new posts into the “Pictures” category so people can see new photos.

Well, thank you for reading. Feel free to contact me or to leave a comment here.

Please keep me in your prayers, as they are still very much needed.

Happy New Year (albeit a little late),

L.

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.


Cost of Herceptin . . .

1 Aug

One dose of Herceptin ranges in cost from $6,254.95 to $9,599.00. Ouch. I don’t know yet what UCLA would charge. But, this is the range I have found. This is the price I have found for the every three week dose. (This is three times the amount of the weekly dose that I currently receive). Since I had the one week dose last week, I am looking to have two weeks worth – not three. So, hopefully the cost of that will be much less.

Maybe my insurance company will pay for it, if I am able to successfully dispute my oncologist’s decision. But, I don’t know.

I have heard of women maxing out their insurance because of the high costs of cancer treatments. Being on Herceptin for one year costs nearly $80,00.oo. And, the chemotherapy treatments each ran into several thousand dollars per treatment. That is all past. But, still, it is a concern of mine as I do have surgeries and continued  treatment ahead.

I need to find out what my policy limits are and find out where I am with that.

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!

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!

More Great News!

3 Jun

I was able to speak with my surgeon today and she went over my MRI results in detail.  I knew that the results were good and that my cancer was shrinking.  But, now I have even better news.

Originally there were three small (millimeters in size) tumors in my right breast.  Now, after three chemo rounds, two of the tumors are no longer visible on the MRI.  In addition, the third tumor has lessened.  My doctors are thrilled, I am thrilled.

So now I have both fantastic news and also some answers.  I will be going ahead with the chemo and not interrupting the chemo to do surgery earlier.  This is great.  I am halfway done with the chemo now.  If all stays on track (I continue to tolerate the treatments and I am able to have each treatment as planned) my last chemo round will be on July 15th. Then I will have surgery about three to four weeks later.  My surgeon is thinking the first week of August for my surgery date.  

In the meantime, I still have to meet with more plastic surgeons to decide on the type of reconstruction and the timing of it. Fortunately, my surgeon is helping me in with plastic surgeons more quickly. I have met with one already, but she does not have a lot of experience with reconstruction after radiation. So I have been referred to a plastic surgeon who specializes in breast reconstruction after radiation. My insurance has not approved this yet (but, I am told that it will be approved).  Anyway, my surgeon is helping to facilitate that so I can meet with the plastic surgeon very soon and be closer to deciding which is the best type of reconstruction for me.

Anyway, it is so late right now, and I have to get some sleep.  But, I wanted to share this great news!  Please keep praying for me, it obviously it is working!

I will write more tomorrow