It's That Time Again

It's time for me to get a few tests done and make some decisions.

On Tuesday, March 3, I will have a "routine" bone scan and CT scan. The purpose of this is to look for cancer in other parts of my body -- not because I am symptomatic, but because that is the routine for cancer surveillance. I'll meet with the oncologist here in Midland the following Tuesday to get the results. I feel comfortable with the CT scan, no worries about any cancer in my lungs, etc. The bone scan is always a worry -- is the ache in my bones from past chemo, new cancer or just old age? I'll know in about a week.

After I get good results from these scans (I'm expecting it, so I'm going to get it!), I plan to follow up with my radiation oncologist -- to specifically discuss the risk/benefit of these tests versus the "routine" exposure to radiation, contrast solution, etc.

On Monday, March 2, I have follow-up appointments with my plastic surgeon and infectious disease doctor. The ID doc wants me to have another surgery to remove excess scar tissue from previous surgeries. Her logic is that the scar tissue could be a home for the bacteria that I've been fighting. But, one friend recently asked me: "Won't that just cause more scar tissue??" It is the proverbial "chicken/egg" type of question.

Paul and I are opposed to more surgery -- the more they do to me, the more things seem to get screwed up. Less is more. If it ain't broke, don't fix it. That is our thinking. We have also become convinced that this bacteria was introduced to my body in May 2008 when I had my surgery. It is a long story, but as we learn more about the bacteria, it makes oh-so-much sense to us.

On a holistic, kind of "out there" note -- I have been doing some reading about the bacteria I have had (pseudomonus aeruginosa; think Brazilian model who died), and I have found that Manuka honey has some wound healing properties AND is effective against the bacteria. This is New Zealand research that does not benefit U.S. pharmaceutical or insurance companies so (surprise!) I've never hear about it from my doctor.

But, I have ordered some, plan to use it on the wound that still exists, and hopefully it will heal completely and be gone. The wound is almost healed, and is showing no signs of infection. This is why I'm willing to try something unconventional. I am grateful to conventional medicine -- it has saved my life -- but sometimes I think medical science looses track of the person inside the patient. They are quick to order tests, surgeries, and treatments. They mean well, and they often do well. But some times, a person has to draw a line in the sand and responsibly try other options. That is what I'm doing with the Manuka honey.

In the mean time, please pray for these tests (bone and CT scan) and my doctor visits. I so want this cancer experience to be behind me!

Cheers!
Joan

This is Another Technical One....

Before I start writing anything more, I want to tell you that my hemoglobin count (iron) went up this week from 2 weeks ago! The normal range for hemoglobin is 10-12; my count went up from 9.3 to 9.7. This still puts me on the low end of normal, but it is a move in the right direction! Thank you to those of you have been praying about this and/or have made food suggestions! It is definitely a praise issue, and I apologize that I forgot to mention it in the earlier posting.

The real reason for my post today.... I've been thinking about my doctor's suggestion for the drug carboplatin, and I've decided that I don't need to do much research about this. It is a good recommendation. For several reasons.

Understandably, I have been praying about a right treatment decision from my oncologist. I have a sense that God really answered that prayer yesterday. First (and I admit, subjectively), my oncologist's demeanor about a treatment decision has really changed. For several weeks he's gone back and forth with options, and has been open that he is not sure what is best. Yesterday he was confident and direct. He said with no hesitation, "I've made my decision, and it's carbo." He said it in a way that implied the final decision is still mine, but clearly this is his recommendation.

Later in the conversation, he indirectly explained why.... Cancer has a language all its own. In chat rooms, women talk about mets (short for metastasis, or the spread of cancer within the body) or about NED, No Evidence of Disease.

Within the clinical setting, researchers use terms like DFS (Disease Free Survival) and OS (Overall Survival). One that took me a while to figure out is pCR, which means "pathological complete response." This describes a tumor that completely shrinks, literally melts completely away, because of the effects of chemo.

Three weeks ago, my oncologist finished treating a triple negative patient with the drugs he used on me in 2006 (TAC) and the carboplatin at the same time -- she has a pCR. A complete response to the chemo. Her tumor went completely away! This is "shout from the roof-top" type of news!

I believe my doctor saw the success of this drug for her, and has decided that it can have benefit for me as well. Each person is different -- her tumor may have been smaller than mine?; and she is BRAC1 positive wherease I am negative for this breast cancer gene -- but any measure of success in one person is hope for success in another!

Also, carboplatin is one of the drugs Kathy Miller suggested for me if I were to continue chemo. It just seems that many things point to this drug as being a reasonable choice.

Carbo has a "sister drug" (cisplatin) that my doctor told Paul about in July, and said then that he would chose cisplatin. Now my doctor has completely changed his opinion, and this has Paul understandably concerned. We asked the doctor about this yesterday. He said that carboplatin (the drug he is recommending now) is much more easily tolerated than the other. And he has seen the carboplatin work on his own patient -- no doubt, that is affecting his recommendation.

So nothing has been 100% decided, but I am warming up to the idea of carboplatin. It seems like a reasonable choice, and will hopefully be the last chemo I'll ever need to consider. That is a big wish, but God is big enough. I just keep telling myself that!

Finally, some GOOD news about Triple Negative BC

One of the side affects of my short chemo is that I don't sleep well afterwards. They must give me some medication (or it is the Gemzar) that keeps me really alert, because the last two times I had this treatment I tossed and turned all night.

So tonight, even though it is around 1:30 a.m., I'm wide awake, and am using the time to do some research. One of the more credible sites that I like to browse is the American Society of Clinical Oncology (ASCO). It is a resource that my oncologist respects, and I have to believe that the folks who present at their symposiums are some of the most respected in their field. Tonight, I found two reports of good prognosis related to triple negative cancer

They conclude:

Conclusions: Not all of these Triple Negative Breast Cancer patients had poor prognosis as mentioned in literature. Both the overall survival and disease free survival are almost similar to those with (other types of breast cancer). Effective treatment strategies can only be implemented with increased understanding of the biology of this distinct breast cancer subtype.

The distant metastasis-free rate after 5 years was 85% (Kathy Miller only gave me a 5% chance for the next 2 years!?) . Conclusions: Triple negative subtype could be a predictor of relapse rate compared with the rest of the group. However there was no significant difference in 5 year survival between triple negative and the rest of the patients.

This is very hopeful information, and completely inconsistent with the information presented to me by Kathy Miller. She is a very well respected doctor in her field -- I don't want to misrepresent that on this blog. She is considered one of the best of the best. But neither she (nor anyone) cannot predict the future with the clarity she presented a couple of weeks ago. There are too many variables, and these reports are both clinical evidence of HOPE for triple negative patients.

Consistently, the most important factor in prognosis is lymph node and blood vessel involvement of the cancer. I had lymph node involvement with my first breast cancer (we just aren't sure how much?), but pathology showed no blood vessel involvement with either of my cancers. The degree to which the lymph node involvement will play in my overall health is an unknown for me, and I have to believe that is meant to be. God knows those details. Even though I might want that information, I don't need that information.

This is the first encouraging news I've seen about triple negative breast cancer in a while... triple negative is hard to beat, but not unbeatable! I am very encouraged to find such positive news from a credible organization!

Now seems like a good time to try to get some sleep....

Lots of Questions... Kind of Technical Answers

I'm sensing that a lot of people have more questions about my cancer and prognosis than are comfortable saying out loud. I will try to explain my situation as clearly as I understand it, with links to technical terms in case you want more information/detail. It does get to be overwhelming.

First, it is safe to say that my doctors agree that this second episode of cancer is not a new cancer. Rather, they think this cancer was always present, but was too small to be seen on mammograms or MRIs and too immature to respond to the chemotherapy or radiation.

Most people realize that the first thing to determine in a cancer diagnosis is the amount of disease with which you are dealing. This is done by "sizing" the original tumor that has been found, doing body and bone scans to look for cancer spread, and checking the lymph nodes and blood vessels. Based upon my tumor size and lymph node involvement, my original cancer (October 2006) was staged 2b -- on the very boundary between early and late stage cancer.

Some good news..... my original (and recent) bone and body scans have all came back with no signs of cancer elsewhere in my body. That is very encouraging. The more time that passes with clean scans, the better my prognosis.

My lymph nodes were checked in October 2006. The standard way to check for lymph node involvement is with a sentinel node biopsy. The surgeon removes up to three lymph nodes, and the nodes are checked right in the surgery unit for signs of cancer. If the lymph nodes show cancer, then all of them are removed and are evaluated to measure the spread of the cancer. In my case, the three lymph nodes were negative in the surgery unit -- no sign of cancer could be found on the first look. So, the surgeon left my remaining nodes in place, and I started chemotherapy later that same day. Unfortunately, in the lab, the pathologist found that 2/3 of my lymph nodes were positive for cancer. In an ideal world, all of the lymph nodes would have been removed for immediate evaluation. But, since I had already started chemotherapy, that was not an option -- surgery and chemo do not mix well as the risk of surgical infection and poor healing is a complication of chemotherapy. We will never know the extent to which my lymph nodes were infected (or not) with cancer. This makes it hard to evaluate the likelihood that cancer might have spread to other parts of my body. Clean body scans are excellent signs, but the question will always be up in the air.

So, this brings me closer to Dr. Miller's thinking : if cancer could exist in my breast -- undetected and unresponsive to chemotherapy and radiation -- then it is likely that a similar, resistant cancer could exist elsewhere in my body. My oncologist is treating me with similar drugs this time as before -- Dr. Miller's opinion is that those drugs were ineffective against the second cancer in my breast, so it is futile to think they will be effective against other cancers that might be elsewhere in my body.

My oncologist has approached my chemotherapy with a 2-stage approach: I am using Taxol and Gemzar through Labor Day, and then will start another combination of drugs after that. If anything good has come from my discussion with Dr. Miller is that my current oncologist and I are having more open discussions about drug options. But, the research with triple negative breast cancer is incomplete, and a variety of drug options exist. Two of the newest ones, Ixmepra and Avastin, are relatively new and still not well studied yet for adverse side affects. The side affects that are known (liver toxicity and uncontrolled bleeding) are not appealing. Avastin was initially rejected by the FDA as treatment for breast cancer in December 2007 , but by February 2008, the drug company had won its approval. A treatment victory for breast cancer patients, or the persistence of drug lobbyist and professionals?

My oncologist has tried to stay away from some of these newer drugs for me because of their toxicity and side affects -- for a patient who is showing no sign of cancer spread outside of the breast, why risk the other problems? Stick with "tried and true" chemotherapies. The problem is that those might not be the most effective. It's also possible that they might not be needed at all -- perhaps the cancer has always been only in the breast, and the mastectomy has treated it. We just don't know.

Finally, I will explain my cancer like I explain it to my boys --with a gardening analogy. Any good gardener knows that you weed your flower beds, and you spread Preen Weed Preventer to discourage new weeds from growing. Well, breast cancer cells are like the weeds. Most of them respond to the Preen (or drugs like Tamoxifen or Herceptin or Tykerb, if we are talking about breast cancer). But my cancer, triple negative, will not respond to any of these drugs. They are completely ineffective.

So, just as a gardener has to constantly tend to the garden looking for and pulling the stubborn weeds, my doctors have to constantly evaluate me and look for signs of new disease. Surgery is my "weed pulling," and chemotherapy is my Round-Up Weed Killer. But, it requires constant evaluation and diligence to react to the new weeds (i.e cancer).  Diet and exercise help, much like mulch helps in a garden to suppress new weeds, but they are ultimately ineffective against the most aggressive and determined weeds (cancers).

The reality is that only time will tell if my cancer is cured. The longer a triple negative patient goes without a recurrence, the better her prognosis. That begs the question of my current situation -- is it a true recurrence, or just a "surgery failure"? Only time will tell, and only God knows. This is the best I can do for the moment to try to make my situation more understandable...

Chemo, Chemo and More Chemo...

Well, I understand now why my oncologist didn't want to review a chemotherapy schedule with me over the phone on Friday -- the regime he has me on is very aggressive and very long.

We talked about this "new" cancer before we talked about chemo options. We all are pretty much in agreement that this cancer was in the breast (but undetected) the first time that I had treatment. We had theorized this on our own, but the Harvard pathologist said the "new" cancer showed signs of previous systematic treatment (chemotherapy/radiation), and this led him to believe it could have been there two years ago.

Mammograms and MRIs are NOT perfect...

The size of my cancer keeps growing -- thankfully it is out of my body and now just a discussion on path reports.... When the cancer was first found in April, they said it was "nothing" -- precancer, Stage 0. After my surgery, the surgeon said they found "about" a 1 cm amount of real cancer. She and I were both stunned. This report didn't satisfy my oncologist -- he had it sent back within his hospital path department for a second review, who concluded "about" 2 cm. Finally, it went to Harvard, who said the exact amount could be "anywhere around" 2-4 cm. At some point, all this discussion becomes academic. The bottom line is that this cancer has to be treated (chemo), and it has to be hit fast and hard!

So... we discussed chemo options. A brand new drug, specific for triple negatives, has come out in the last year (Ixempra). It shows promise, but it is not "proven" enough in my oncologists mind and he was hesitant to use it. Had I stayed at the 1 cm size for the cancer, he said he probably would have gone ahead with the new drug. Given what we know about the size of my cancer, and that my previous cancer had a "partial" response (sounds bad, but its actually a good thing) to the previous chemo regime, he recommended repeating what I had done a couple of years ago. With some tweaking.

So... I will get 4 doses of two drugs (Taxol and Gemzar) every 3 weeks. In between doses, I'll get a single dose of just Gemzar. After these drugs are finished (around Labor Day weekend), I'll start a second combination of drugs (Adriamycian and Cytoxan) that will be given 3-4 times every 2 weeks. This will end sometime mid-October.

So... yesterday, I had my first treatment of Taxol/Gemzar. It has to be given through an IV in my arm, since my "medi-port" was removed in November. Unfortunately, we have decided that I should have a port put in again (this makes given the chemo drugs sooo much easier) because my veins are so hard to find (it took them half-an-hour), and because two of the drugs (Gemzar and Adriamycian) are so hard on my veins. The tough part will be keeping my white blood counts high enough for me to get through a surgery.

This sounds complicated, but it is amazingly "normal" to me. I've been living cancer in some fashion for almost the last two years. What bugs me about the treatments is how much TIME they rob from my life. And there is no eloquent way to say that it really stinks that I'll lose my hair again! And, I hate not being at work -- I really enjoy my job at the library. I could possibly work on my "good" days, but I don't know how reliable I'll be during chemo and I also don't want to be exposed to every patron's potential virus or illness. I need to be focused on getting better. It will take a lot of time already -- making myself sicker in the process is just detrimental in the long run.

So, it looks like my life (and my family's life) is a little more on hold again. It will be different this time around... Shane is driving, so that will be helpful. Some of the treatment can be done in Midland instead of only at Royal Oak, so that helps. And, until the kids are back in school, we have some flexibility in our schedule with them. We have more options for leaving the older boys at home and finding friends for Liam is not a problem. Having meals again would be helpful, like we did last time. I'll add some information on my webpage about that.

Neither Paul nor I understand this at all. I've kept up with some of breast cancer histories, so I know that I'm not really that unusual to have a recurrence and that I'm lucky it didn't come somewhere like bone, liver or lungs. In all practical terms, it didn't really come back -- it was just never taken away. We just both thought we were moving on, and now this brings life back to an almost-screeching halt again. He is really feeling the brunt of it all -- it is manageable to support a person through a first round of cancer, but then when it's over you are so relieved. To have it come back again is just overwhelming. For me, as the patient, all of my responsibilities have essentially stopped. For him, as the main parent, all of his responsibilities are just that much more critical. If you say prayers for me, please always remember a couple for him, too...

In for a Rougher Ride?

My oncologist called tonight to give me the results of my pathology report. (That's never a very good sign.)

My path slides were actually sent to Harvard instead of MD Anderson. I don't know why, and I don't really care why -- both are very reputable hospitals.

At any rate, Harvard confirmed that I have more invasive cancer than previously thought... My oncologist will talk to me about treatment options on Monday and start treatment then too. I think he wanted to confirm the information with me, give me a chance to digest it over the weekend and then talk "shop" more easily on Monday. I was expecting to start some form of chemotherapy on Monday anyway -- now it might be harsher drugs and/or for a longer treatment period? I really don't know.

Prognosis-wise, this doesn't really change anything. It is concerning that the cancer is as fast growing as it has been. It has been a very sneaky cancer.

But, the doctors consistently think that this is cancer that was there before -- that it was not mature enough to respond to the chemotherapy, and (since it was no where close to my lumpectomy site) it was not removed surgically. If I could go back, I would definitely choose a different treatment option, but I am different person now, too. Much more informed, much stronger. I wasn't ready for a mastectomy 2 years ago. Such is life.

So now what?

Philippians 4:8 says: Finally dear brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.
What I know to be true is that (1) cancer has NOT been found anywhere else in my body besides the breast; that is excellent news! (2) I have a good relationship with my medical team and confidence in them. When they need more information, they do things like send my slides to other hospitals. They're aggressive in treatment, willing to answer questions, and to make Friday evening phone calls. I'm blessed. (3) Finally, God is in control of my situation. I might not like the ride that I'm on, but He's with me and watching over me.

All of these things are true. I will choose to think on them, and I will get through this. It will just be a little more work than we had initially thought...

Diet Coke and Jell-O

Tuesday (6/24) I had my first Zometa treatment. This is a bone building treatment that has shown promise in reducing the spread of cancer to the bone. My doctor suggested this is a pro-active course of treatment -- my body scans have all been clean -- this medication is another tool to help ensure that my body is strong and resistant to the spread of cancer.

The Zometa is given by IV drip, and everything went like clock work. The nurse found a vein on the first try (something difficult to do with me), and the infusion took about 30 minutes. I was in and out of the office within an hour -- very efficient in terms of doctor visits! Afterwards, I felt fine -- Liam and I went to the library for a bit, we had dinner and then we went to see The Incredible Hulk (Paul was golfing; older boys were away on their mission trip).

But, oh my... about midnight on Tuesday my body really revolted against the Zometa -- I had fever, body aches and general aches all through my body. For the first time ever on chemo, I was sick enough to throw up... It was not pretty... The only food that sounded even remotely good was Diet Coke or Jell-O. I'll be talking to my doctor about this experience -- to see if I can get any meds with the Zometa to help me tolerate it better next time. Even today (Friday) I still have achi-ness in my legs...

Monday Paul and I see my oncologist in Royal Oak -- that is when I hope to get the information back from MD Anderson and to find out for sure about my chemotherapy treatments. I am anticipating 4 treatments over the next 12 weeks. I'll know for sure on Monday.

Shane and Tyler have called from Montana -- they assure us they are having a good time. Their work on the Habitat houses was finished Thursday, and Friday they are backpacking up into the Montana mountains for about 4 days.

Sunday Liam and Paul are going to a Detroit Tigers game with our brother-in-law and nephew. Liam loves anything that involves sports, and one of his favorite things to do is to pitch back and forth with us in our back yard. He is very excited for the game! It is a real treat that Scott had tickets to share with us like this!

A Quieter Home

Shane and Tyler left yesterday (Friday) for their church mission trip -- they and 16 others will be working on a Habitat for Humanity house in Bozeman, MT for one week. Afterward, most of the group is backpacking in the mountains nearby, where they'll sleep in tents and backpack day trails for 3-4 days. It is really a very special trip -- they're traveling to MT by Amtrak and chartered bus ( b/c of flooding). Road trip! They'll have the "mission" part of the trip by working on the HFH house. And will see a part of the country that neither of them has ever experienced. They'll be encouraged to have a daily devotion -- and how awesome will that be while in the mountains!?

I received a phone call Thursday evening that my doctor's orders for the Zometa (the bone building meds) have been sent to Midland -- Yea!! I should have called on Friday to schedule the infusion, but I put it off -- we went up north for the day and I wanted a "normal" day with the boys before they left for their trip. Now I'm kicking myself -- hopefully I will be able to get the Zometa (which can cause flu like symptoms, etc.) early in the week so I am "recovered" and able to get chemo on Monday, June 30. I didn't think about the scheduling issue of it all until late Friday evening. My bad.

My "latest and greatest" kick is to try to reduce my fat intake and (eventually) increase my exercise each day. "Studies have shown" that this combination is beneficial for reducing breast cancer recurrence, and possibly most so for women with triple negative BC, like I have. Trouble is, the recommended fat intake per day is only 33 grams. When I started with the idea, that sounded like a lot. But, today I started actually counting fat grams -- the butter alone on my breakfast toast and dinner corn-on-the cob added up to almost a third of what I'm supposed to have in a given day! I have some learning to do, that is for sure. Keeping a food journal (ugh!) will be helpful, but I have to confess -- after I realized tonight how pitifully I had blown my goal, I drowned my sorrows in a bowl of ice cream. Tomorrow is another day...

The saga continues....

This is the first post to yet another "update" website. I like this format better -- mainly because it does not have any irritating advertisements or surveys to bother people! :-)

My cancer journey has been a "good news, bad news" kind of saga. The bad news of course is that my recurrence happened so quickly. Less than a year after my standard treatment ended. We knew that my cancer ("triple negative") had a high recurrence rate (due to the lack of meds available for it?), but we have been literally stunned that it came back so quickly.

The good news is that it appears we caught the recurrence before it had a chance to move elsewhere in my body. My bone and CT scans were all "clean." My lymph nodes were removed from my previous treatment, but the cancer can still move elsewhere in my body through the blood vessels. The safest course of action is do chemotherapy again. My oncologist is considering a new drug, approved late 2007, which has shown to be helpful with my cancer.

But, cancer treatment never moves very quickly. I talked to my oncologist on the phone last night, and he said the pathologists are still having a hard time with my cancer -- trying to determine how much is "precancer" versus full grown cancer. I asked my oncologist about getting a second opinion, about going to a center that deals only with breast cancer. He answered that instead of doing that, he'd rather send my tissue samples to M.D. Andersen and get their opinion.

Long pause.

"You can do that? Without me having to travel to TX?" (and uproot my family and spend our family savings and... )

"Sure. In fact, I'd feel best about doing that. Why don't we do that? I'll get it set up and ready to go tomorrow."

Another long pause.

Wow.

So now my tissue samples are being sent to one of the best cancer center treatments in the country, for their analysis and recommendation. A second, stunning moment for me!

In the meantime, I am setting up appointments to meet with oncologists here in Midland -- the bulk of my treatment will still be in Royal Oak, but some of it (follow up shots) will be done here at home. Hopefully, a good compromise for my health and our family schedule.

God is surely in the details of my situation. Just when I thought we had one defined course of action, He opens the door to another set of experts and treatment possibilities. It makes me feel more hopeful -- to have the folks at M.D. Andersen look at my tissue samples, and for the treatment discussions/decisions it might influence. If only to confirm that the course of treatment we are considering is the best -- that will help bring a more complete sense of peace to me in this situation.

We all have said it at one time or another -- myself, Paul and my oncologist -- that more needs to be learned about treating triple negative breast cancer. Treatment decisions at this point are very random (think "Wheel of Fortune"). I feel much better to think that God is the one spinning the wheel.

I'd like to buy a vowel, please...