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Friday, April 25, 2008

New oncologist

For some time we'd been trying to see an oncologist at the Lombardi Center at Georgetown University Hospital. One oncologist in particular there had come very highly recommended from multiple independent sources, and another one looked very good as well. Before going to the Mayo, we were looking at Lombardi as a possible local version of a place like the Mayo or Johns Hopkins. But we were unable to get an appointment. Even though the recommendation Nadine received at the Mayo was not terribly different from what our first oncologist back home had recommended, we still thought it would be good to check out Lombardi - because it seemed to us that the doctors there might be a little more plugged in to the latest developments, and because we also need to think about long-term care (that's long term, as in decades!).

Thanks to the efforts of several people (to whom we are very grateful), we were finally able to get an appointment this Wednesday morning, the day before Nadine was scheduled to begin chemo. It paid off.

We were able to see the second of the two oncologists I mentioned, and just as with the surgeon we met with at Mayo, I would say that Nadine left with a very good feeling about her. My own opinion is that what sealed if for Nadine was when the doctor described how she would actively follow the effects of the chemo to see if the tumor was responding, and would tailor the approach accordingly. Most likely, Nadine will continue to have the chemo largely as already planned, but if for some reason a modification is advisable, the doctor would discuss this with us rather than just sticking to the standard approach regardless of how well or poorly it is working. That kind of hands on approach that takes into account what is actually happening for the individual patient is exactly what Nadine was looking for, and what she most likely would not have gotten if she'd stayed with our original oncologist. It's not so much that the first oncologist wasn't good - she was very nice and seemed very competent. It's that she seemed more rigid in her approach (and if you know Nadine, you know that just the mention of rigid will turn her off, even if in the end you do exactly what you had planned all along) and that when you find someone who resonates with what you want, and when they are in a good institution to boot, that's hard to top. It was the same with the local surgeon, someone Nadine has really good feelings about (after all, he's the one who found the cancer in the first place, and he was very proactive about it), but nonetheless will not be using. So, it's surgery at the Mayo, chemo and other local care at Lombardi.

For me it was important that the Lombardi oncologist was upfront about the fact that the adriamycin might well not have a dramatic effect given the nature of Nadine’s cancer. This was something that I already knew, but she talked about it even before I asked. She feels it is very important that her patients know what is and is not known, and that they not go in thinking they are getting a magic bullet. I appreciate that, and felt assured that we were dealing with a good doctor here. I think it was also reassuring to Nadine, because it gave her confidence that the doctor knew here stuff, was honest, and would work with us (and also because it was in this context that she talked about tailoring the therapy).

The Lombardi doctor did want to make one change to the chemo plan - to change from doing adriamycin every two weeks to doing it every three. The former is the current standard approach, and was recommended by both our original oncologist and the Mayo oncologist. However, the Lombardi doctor said that the pathology indicates that Nadine likely has a somewhat slower growing tumor, so that any potential benefits of the two week cycle revealed in large studies probably would not be apply in her case. She also said that the one study that really looked at this question did so in the context of also using a taxol, which she thought (based on a fairly large body of literature) was probably the real reason why the two-week cycle was better. Having looked into the literature pretty extensively by now, I see that it supports what she said (there is actually a second study, using epirubicin instead of adriamycin (both are "anthracyclines"), but it was also done in the presence of a taxane). There is nothing (that I can find at least) which would argue against her recommendation. So, Nadine has decided to go with the three week cycle.

She is also suggesting that we might change the approach to the taxane, which Nadine will be getting after she finishes with the adriamycin/cytoxan. She suggests that weekly taxol rather than biweekly taxol will likely work better. That was something I had only just became aware of, because a large study on the question was published just 8 days ago in the New England Journal of Medicine. It verifies what she is saying. Upon further research I found that there was a smaller study published a couple of years ago which came to the same conclusion. Obviously this is a doctor who has her ear to the ground and really does know the latest developments.

Next, it turns out the the Lombardi doctor is acquainted with Nadine’s ophthalmologist. This will only help when it comes time to do steroids (with the taxol), which might negatively affect Nadine's glaucoma. Whether we will do taxol, or a variant know as abraxane which requires a lower dose of steroids (this was suggested by the Mayo oncologist) has not yet been determined. The Lombardi doctor didn’t reject it, but nor did she embrace it, because there is much less experience with abraxane for use in pre-operative chemotherapy if the cancer has not spread beyond the local lymph nodes. However, she will be looking into it, and we have a few weeks to figure this one out.

Finally, we got a hard copy of the pathology report from the breast biopsy done at Mayo. Tissue was sample from two different location. In one location the cells were grade 1 and in another were grade 2 (on a three point scale). Grade 1 is the best prognostically, and we are very happy with this finding, as before we thought Nadine had a grade 2/3 cancer.

So, all in all, Wednesday was a good day.


change

As soon as i heard that my mom had cancer i was nervous that everything would change, and everything did change. it is only the second week of my mom's Kimo and i already feel like nothing is the same. to make everything worse my mom gets all the attention which i am definately not used to, and my friends get to like go shopping with their parents and i have to stay home doing other unimportant . well this is only the second day and i already feel terrible. YAY a whole more year of misery;..( i feel like hiding in a shell and never coming out

1st chemo treatment

I had my first chemo treatment yesterday. It went well. I did have a moment during the cytoxan drip when it didn't feel right....it got swimmy around my eyes. They slowed the drip and it got better. Then I started worrying about the time..... I had a 12:30 job. I didn't want to cancel because it was my last time with this family and therapist, because the therapist got a new job, and I know they all like me and that there have always been complaints about the interpreter when I have had to cancel. I did make it, but I was 10 mins late.

I called ahead -- my agency knows what's going on and I had no complaints. I was a little sleepy at the job (that happens sometimes pre-chemo anyway.... happens to me on all slow moving jobs.) After that I came home & walked the dog to pick up Emily. After I came home I was tired -- and after I lay down I started to feel nauseous. I took an antinausea medication, but it really took until 6pm to work -- an hour and a half after I took it. After that I went to sleep..... and slept and slept. (I did get up for a midnight snack and to say hi to Matthew.) This morning I slept instead of going on the bikeride, like a lazy teenager.

I did walk the dog 4 miles...... and I have another convenient excuse for not having biked...... the bike was doing that thing again (on Tuesday when I last rode it) where it complained when I was in most gears.... other that the one IT wanted me to be in. So it's at the bike doctor's today.

:-D

Tuesday, April 22, 2008

Psyched to start chemo Thursday!

I had chemo teaching today -- and tomorrow we see an alternate oncologist. I am very psyched to be starting chemo on Thursday. AND I am looking forward to the end of the search -- this is the last "2nd opinion" I hope to be getting. (It's the 4th -- though actually only 3.5...... counting Hopkins as half.)

The oncologist we have is good, but I think she likes to stick to the standard tried and true therapies -- and this other one, at Georgetown, is involved in clinical trials -- so we hope that means she's up on stuff and interested in other possible alternatives..... AND my nurse friend Mona says it's completely reasonable to start chemo in one place and then switch. Besides, Lance Armstrong did it. I'm reading his book about his battle with testicular cancer (thanks to Joan who gave it to me just before we went to the Mayo) and he is totally my inspiration. HE kept biking. He was always a bit faster than I am, though. :-D

See -- the other thing that really keeps my spirits up is that I don't have to slog through the research. Alan does a great job of it, with some help from Sandi and Joan and a LOT from Lynn who just went through this. However Alan is frustrated because the research is just not at the point of tailoring treatment to people's individual cancers -- though it is moving in that direction. (He keeps saying it's a pity I didn't wait 5 years to get this.)

The support from friends has been amazing -- ONE thing I am getting is friend-made meals -- and I must say, we are eating MUCH BETTER than usual!!! I hope my taste buds don't mess them up too much.....

I will miss my hair when it goes and I will miss my taste buds if they change -- and, gosh, if my energy drops a lot and stays dropped for months....
I've always had such an overabundance of energy I'm not quite sure who I'll be without it...... I sure hope I get more than the 20 minute bursts Lynn described because I just don't manage my TIME well enough for that.... it would take me that long just to figure out how to use the 20 minutes! (Plus.... how many miles can you bike in 20 minutes?)

Good thing those changes are all temporary -- they seem more drastic than losing a breast and a bunch of lymph nodes which have been invaded by aliens. Anyhow -- Alan
thinks I will enjoy the wierdness of being lopsided..... If I pass the genetic test which will enable me to keep the other breast I will indeed be happy to be lopsided.... and carry an extra apple or something in the right bra cup. (HOw funny would I look with a sandwich in there, do you think?)

:-D

Saturday, April 19, 2008

Home Again!

Got home late last night, starving -- but instead of being completely uninspired about what to eat I found this great big box of salmon and sardines (!!!) waiting for me. Thank you Lenny & Janet!!! (As of this writing I have devoured a can of each.....) Then today ..... I've been tired ..... and I haven't even started on chemo yet! We did have to get up early every day in Minnesota, and didn't usually get to bed when we should have.

Yesterday we saw the "alternative therapies" doctor. (This was amazing because he was booked up until June. I don't know how we got lucky -- I jsut asked. They did everything I asked over there...... they were just great.) I thought he would know about herbs. He actually was down on supplements -- he said they would feed the tumor also and I should stop them. (Course by that logic I should starve myself, like Max Gerson said.) I have to figure out which ones to stop and which to stick with..... There are some herbs I have just started taking -- which are supposed to help stay tumor growth, strengthen the liver, build the blood. (Maybe I should wait on that last one til closer to the surgery or at least til I see whether my iron levels are going down with the chemo.) I was getting ready to check out herbs that strengthen the heart..... I guess I had still better look for that.

Basically the alternative therapies guy was all about meditation, and calm, lessening anxiety, and sleeping more. Oh and massage -- but I have to find that here. (Any leads?) The anxiety is hard... they took good enough care of me at the Mayo that they have quelled most of my anxiety about the cancer. Now as long as I have a good plan with a good local oncologist (to be firmed up next week) I will be able to relax about that, once I've started -- I think. BUt the daily anxiety about getting the kids where they want to go and up and to bed and stuff...... and not meeting their needs..... that's hard!

Thursday, April 17, 2008

The medical report

Today Nadine had a core biopsy performed - the pathology report on that will be in late tomorrow or early next week. We haven't yet seen the pathology report on the slides we brought from Virginia, but we should have that by tomorrow also.

That said, everyone here seems to feel that the cancer is stage IIB/IIIA (I think they are leaning now more towards IIIA) and a bit more aggressive than the doctors in VA said - even though, as far as we know, this conclusion is based only on their reading of the pathology report submitted by the VA pathologist. We'll see what the Mayo report says.

After all of the discussions with the various doctors (the internist, the breast surgeon, the medical oncologist (who gave us a second short visit to answer some additional questions we submitted to him today), a GYN oncologist/surgeon, various nurses, and I'm sure I'm forgetting somebody) Nadine is feeling pretty sure about how she wants to proceed:

4 cycles of adriamycin/cytoxan (AC) - the biggest concern has been about the cardiotoxicity of the adriamycin. We've gone over this extensively with the oncologist and explored many various alternatives (including ones we've come up with ourselves). Nadine feels decisive that, in spite of the risk, AC is the best course of action.
4 cycles of abraxane - this will replace the original recommendation of taxol. It should enable Nadine to avoid the use of steroids (or at least minimize their use), which are bad for her eyes given her glaucoma. The oncologist has used this in the past and feels it is just as good as taxol.

4 weeks (probably) of rest/recovery

Surgery - Nadine really hit it off with the surgeon, Dr. Boughey. If there was a surgeon who could be the opposite than the one we saw at Johns Hopkins, this is the one. As much as Nadine likes the surgeon in VA who removed the lymph node, she wants Dr. Boughey to do her surgery - so we will be coming back here for that.

Some period (4 weeks?) of rest/recovery

Radiation - this is the one area we haven't really explored yet. Since the radiation has to happen 5 days a week, we will have to do this in VA. So we will need to make decisions about where to do this, and what radiation oncologist to use. But there is time to do this, and I'm sure we'll consult with Mayo as well when we come back for the surgery.

The chemo will be done in VA. We will likely stick with Nadine's current oncologist if she will concur with Nadine's decision on the chemo (she had originally recommended 4 cycles of AC followed by surgery followed by taxol, so we have two relatively minor changes that she needs to consider: doing all chemo before surgery, and changing taxol to abraxane). But we may still be able to get an appointment with one of the doctors at the Lombardi Center at Georgetown. We are considering what to do here. Since the recomendations on chemo have been largely similar everywhere, we may be fine sticking with the current oncologist. The benefit of Lombardi is that they may be more plugged into the very latest information - but I have the sense that the oncologist here is similarly plugged in, and he is the one who has helped Nadine come up with the chemo approach. Still, since we need to be thinking long-term as well as short-term, we might still want to do Lombardi.

We did have one real scare today, related to the visit by the GYN oncologist/surgeon. We thought he was seeing us to discuss the possibility of removing Nadine's ovaries as an approach to preventing recurrence, which would be recommended if she tests BRCA positive. But in fact, when the medical oncologist looked at the CT/PET scan yesterday, he saw what he called "some soft tissue mass in the pelvis" - probably the uterus, that could be nothing, could be fibroids, or could be something more serious. No note had been made of this by the VA radiologist (whether because they missed it, or because they concluded it was nothing to be concerned about, we don't know). So he wanted the GYN specialist to see Nadine. The GYN specialist reviewed the CT/PET himself, then came in, asked Nadine a bunch of questions, gave her an exam, and concluded that she is fine. What was seen in the CT/PET was entirely consistent with the fact that she is 44 and had carried two children to term. Basically, the uterus was slightly enlarged and, as he described it, a small portion at t! he top had folded over on itself so that in the scan it looked sort of thickened (if I have that right). But it was fine. I have to say that both Nadine and I were very concerned, and then very relieved!

Tomorrow we will see the genetic counselor, and then Nadine will be participated in a clinical trial of a new imaging technique (she was not eligible for the other two trials that really interested her). And then we'll be coming home, a day earlier than planned.

wigs and scarves!

Okay, enough heavy medical news. I did a fun thing today too. There's a place that does wigs and scarves that offers new Mayo cancer patients a free wig. I don't know that I will want a wig, or that I would find one I'd like..... I really like my own personal hair -- but see that is not going to be a choice this summer.

Well they were really helpful....and really nice. This woman helped me find a wig in back that worked better than the ones out front, which looked a good bit like my hair! (It looked more like my mom on top..... but they said it can be styled. I am going to see if my hairstylist friend Cara would be willing to play with it.....:-)

Then I saw the scarves. Oh boy were they pretty. Well maybe just one, I thought. The woman showed me how to tie them on. They were really reasonably priced -- she said it's because they are a service, not making money. In the end I got three scarves and a hat -- and then she remembered about the sleep caps.

Sleep caps? WHo needs a sleep cap, I thought... and then I remembered about the AC in the house in the DC summers. My hair is really warm and protective..... I'm lucky to be going through chemo now rather than in the winter! So I tried on the caps. The one I liked best was pretty thin, and the wonderful woman found me a better one. (She let me keep the one I liked, too -- the sleep cap was another freebie like the wig.) Finally she got me some wig shampoo and conditioner. See these wigs are synthetic, and you can't use regular hair products on them or they get glopped up. (I will have to tell Em about that.)

They offer a makeup class too, but only once a month -- the only thing I was thinking of learning how to do was draw eyebrows on. (I hear they will fall off with the hair.) The woman showed me the basic idea -- I will be able to get any dark brown makeup pencil and..... I don't know if I'll be able to do a good job drawing in eyebrows, but I have this great 10 yr old daughter who has a lot more practice with makeup than I do. (Cousin Lois gave her tons of Avon Lady samples a few years ago and for a long time she had makeover playdates.....)