Tag Archives: neo-adjuvant

Sorry been too groggy to be bloggy . . .

29 Aug

This past week has been a series of doctors appointments, pretty much one every day this past week. Also, had my Herceptin treatment (finally) this past Monday. It was my first three week dose (prior to now I have gone weekly for Herceptin, but now I only have to go every three weeks for a triple dose). The Herceptin treatment made me sick (they ran it over one hour, it is supposed to, at least UCLA does it this way, be run over 1 1/2 hours). I have always had to have my weekly treatments ran over an hour instead of 30 minutes (the usual infusion time for a weekly dose). Otherwise, I have reactions and get sick after wards. So I figured that when I went to the “once every three weeks dose” that is usually done in 90 minutes, that mine would be done in the normal Lisa double time. But, my nurse (not the one that I adore, who understands my sensitivities to infusions and how I react) said no. I asked her to explain it to my doctor and she did and he also said no. They said I could have a one week infusion over one hour or a three week infusion over one hour.

What is their problem? So, I was forced to choose between getting the amount of Herceptin that I knew that I needed but also get sick or take a smaller dose and leave without getting sick. I decided to get the triple dose (knowing I would have some reactions) because I have already been off of this critical drug for nearly a month now and I just did not want to risk taking the smaller dose after such a long absence from this drug.

So, I felt pain during the infusion (totally unnecessary if it were run over a longer period of time) and then came home with a fever and flu like symptoms which lasted a few days. Trust me, coughing after you’ve had a mastectomy is very unpleasant.

I spoke with my favorite nurse about the shortened time for the infusion (she was out on Monday, so could not intervene) and she said that she would straighten it out for next time. She feels that it should be administered over about 2 1/2 to 3 hours with a watchful eye and slowed down if I experience pain. I just can’t afford to go in for treatment when she isn’t working that day.

Let’s see, what else. Oh yes, saw my reconstruction surgeon – she waited on expanding me (I am glad for this, less pain to deal with this week). She also does not want me typing right now – so this will be my last post perhaps for a week or more – bummer.

Saw my oncologist (not the specialist that I love) –  nope, the goober that I detest. He was less unpleasant after I kind of lawyered up on him last week. He is now too afraid to say anything negative (which by the way, was NEVER my point. I want the truth, whatever that is. But. he can’t keep anything straight during our meetings and his “advice” once nearly killed me – sent me into anaphylactic shock – I have now since found out that the PA who advised me incorrectly on premedications for one of my chemo rounds was working under him and following his advice – NEITHER of them – the doctor or his PA – consulted my chart because if they had they would have seen my prior allergic reactions and would have instructed me to take more of the medication not less, or as in their case, telling me to take none). Anyway, need to stop dwelling in the past.

I hope to see the specialist up at UCLA very soon to go over my pathology report. I am told right now that I have about a 20% chance of having a recurrence within the first year. This is what my oncologist said. Have no idea what that means, the first year after treatment is completed or the first year after surgery or what? I don’t bother following up on many questions with him now because he nearly always conflicts himself and I am left worse off, more confused than ever and pretty depressed. So this time, I went the, “not going to allow the butthead to depress me” route and left it at that. Besides, my specialist up at UCLA is the one I trust and so I will hopefully feel better after seeing her again. Until then, I will hang on to my having an 80% chance of NOT having a recurrence within a year (whatever that means). I mean, what does it mean for the year after surgery, or the year after I have completed treatment or what? I don’t know and maybe really know can tell me these things. But, I sure won’t waste my time asking Dr. Bonehead any of these concerns for his answers will not shed much light on anything or be something I would trust or rely on.

Let’s see what else, oh, I am anemic now, can really feel it too. Very slow moving. I was very anemic after surgery (probably from a combination of blood loss and chemotherapy), but have improved significantly since then and I am sure I will get back to my non-anemic self soon. Until then, the sloth makes her way up or down stairs out of necessity only (damn stairs)! In the hospital they wanted to do a transfusion, but I had not signed a consent for that (I am such a brat aren’t I?) Anyway, I told them I would not consent until my surgeon came by to see me and low and behold, yeah, my surgeon agreed we should wait on the transfusion. Phew!

Okay, it is pretty much too painful to continue now. I have stop typing.

I am doing okay, still recovering, still need lots of help doing just basic things and would love to hear from you (phone calls are great and so are emails or messages here or on face book messages). Just remember I can not type back at least not for a while.

Keep praying for me and for my family. Love to you all.

Lisa

Tags: , , , , , , ,

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.

Tags: , , , , ,

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.

Tags: , , , , , ,

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!

Tags: , , , , , ,

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!

Tags: , , , ,

Day three is done, now onto day four . . .

19 Jul

So in chemo speak, day one is the day of chemo, day 2 is the day after, day 3 is the second day after and well, you can see where it goes from there.

So now I am just into day four (since it is now 3:16 in the morning, Sunday).

After a certain number of these numbered days you start to improve some each day and then you start counting your way back to feeling like yourself. I have been really lucky and for most part haven’t felt an incredible cumulative effect from these chemos. But, with chemo round five and now this last one, things have changed a bit for sure.  I think it is the heat. It was really hot the weekend of my fifth chemo and so I was not able to take walks through the day – the heat just turns me upside down. But, with the prior chemo rounds it was cool enough for me to walk most anytime of the day. In my fourth chemo round I was still walking a mile in the morning  or evening on Saturday (the day I am “hit” by the side affects of the chemo). But, it has been too hot to do that the past two rounds.

I did go for a short walk this am, while it was cool. And then I went for a walk around 1:30 am with Andrea who is my caretaker this evening. She was kind enough to go with me and walk my pup Molly at the same time. We heard and then saw a bat flying overhead (that was pretty neat). Anyway, it felt great to walk in the cool air and I felt much better after the walk. So, I think that it the key for me, being able to get exercise during this time, but also being able to stay cool.

Tomorrow (okay, today I mean) I am going to go out early and try to get in a long walk and then repeat it again in the evening.

Well, I am doing pretty well right now, happy to be nearly done with this last chemo and looking forward to the break ahead. From what I am told by women who have gone through this, everything else I have to go through with the treatment (surgery, reconstruction, radiation) the chemotherapy is the worst part of it. Nice to know I guess. And, if it is true then I am glad to be getting the worst part of it out of the way.

Please continue to keep me in your thoughts and prayers, it means so much.  And the traffic on my blog really makes me feel good to know that my friends are following me. Thank you.

Tags: , , , , , ,

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!

Tags: , , , ,

MRI RESULTS ARE GOOD!!!

30 May

I had my second breast MRI today.  I wasn’t expecting the results until Monday or Tuesday. But, my surgeon called me and told me that the MRI shows that my cancer is shrinking and that I am responding well to the treatment.  This means that I am now half way done with the chemotherapy.  At least as far as we know.  Chemo comes in many different cocktails, they combine what they think will work best with your cancer.  But, sometimes, the first choice doesn’t work and then you have to try something else – which means more chemo rounds.

So I am really relieved.  I have three more treatments to go.  Then surgery.  Monday my surgeon and my oncologist will discuss my case and make recommendations as to when I should have surgery.  But, all is truly going well.

Thank you to everyone for your prayers and support!  Please keep praying for me as I am not through this yet, but it is so great to have some good news!

Tags: , ,

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.

Tags: , , , , , , ,