Tag Archives: chemo

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.

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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.

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LAST CHEMO IS TODAY!

16 Jul

Today is my last chemo. I can’t wait to be done. I am definitely weaker now and that is frustrating. But, considering everything, I am doing really great. I am having a great response to the chemo. My cancer has shrunk significantly.  So, all is good. And, even though I am pretty tired, I have worked full time (except for the actual days of chemo and the weekend following chemo). With each round so far, I have gone back to work the next day (on Friday) and met with clients and put in a full day. And, with most chemo rounds, I was working from home – laptop in bed – on Monday. I would work a little bit, rest a little bit, work a little bit and rest a little bit.  Fortunately, my work doesn’t require much physically. I am writing mostly. But, this last chemo round was not so easy.  I did get anemic and wow, I could really feel that.  I still feel it, although it feels as though I have improved in that regard (I will know when I see my blood work tomorrow morning).

What a crazy ride this has been. From incompetent doctors and a near death experience to the most amazing people showing up in my life in ways I could not have imagined they would, helping me in ways that I would not have expected. I don’t know what to say, except that I am so incredibly grateful for the latter part of course, not the incompetent doctors or the near death experience) 🙂 I am grateful for the incredible support of my family, friends, and new friends and I am so grateful for having only one more chemo left. (If you have read prior posts, you will see that Dr. Gloom had told me that I might need more chemo after surgery. But, I have since met with a specialist who specializes in my specific type of breast cancer and she has made it very clear that I will not receive more chemo).  My current oncologist is a general oncologist (not a breast cancer oncologist).  He deals with all types of cancer and just doesn’t really understand the treatment protocol for my type of breast cancer. Thankfully he follows whatever UCLA says he should do. But, in the interim he comes up with some wacky comments and doesn’t really seem to know how to filter what he is saying (as in he ought to really know what he is talking about before he talks . . . this is the same guy who argued with me about how may chemo rounds I had received . . . aaargh).

Anyway, this one is my last. So grateful for that.

I am bracing myself for the possibility that the sixth round may be as difficult as the fifth and, or, I suppose, could be worse. But, it could also be a lot easier (which is what I am really hoping and even expecting – why not? My third and fourth chemos were by far easier than my first two).  In either case, I am prepared and will recover and do well.

Okay, this post seems a little whinier than most. I am still going to post it.  But, I will do a follow up that is less whiny 🙂

Thank you so much for your continued prayers and support. I so greatly appreciate it!

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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.

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