15 May - Back from SIR sphere treatment

Everything went great yesterday with Sarah's SIR sphere treatment. We got to the University of Illinois at Chicago hospital at 6am and Sarah was done and back in the recovery room by 11am. She had pretty bad nausea afterwards but that is likely due to the anesthesia - the nausea has mostly subsided now that she's back home. There doesn't seem to be any lasting pain at this point -- just some pain when they initially delivered the treatment to her liver. We ended up leaving the hospital at around 9pm. While we were out, Sam made Sarah a little wood sign which you can see in the pic above -- "I love my Mom." It was very sweet!
Sarah is taking it easy today to make sure her stomach gets back to normal, plus she needs to go easy on her right leg where the incision for the angio catheter is. Otherwise, she's doing well. Now we need to pray that the treatment is effective. She'll get a blood test in 2 weeks to verify her liver is functioning fine and then we hope to get her back on Herceptin and chemo so the rest of her body is "covered." We have to wait 3 months to do a follow-up PET scan on her liver to see how effective this SIR sphere treatment was in killing off her large liver tumor (they said it was pretty much taking up all of her liver's left lobe now) - the doc said doing a test earlier could be inconclusive.

9 May Update - SIR next Wednesday

Sarah and I celebrated our 13 yr anniversary on 6 May! We had a nice romantic dinner at a great local French restaurant and this is a picture of one of our dessert plates. The waiter had written "Happy Anniversary" in chocolate on the plate!

It was also a great anniversary gift that Sarah was approved for the SIR sphere treatment. We went in yesterday to have her prelim. angiogram, CAT scan and test run completed. Everything went fine and we were on our way back home by 3pm. The actual SIR sphere treatment will be done next Wednesday. The doctor told us that Sarah could have some pain and nausea after the treatment since her tumor now takes up a fairly large part of the left lobe of her liver, but there's is still a good chance that she will be able to come home on the same day of the treatment. We're not going to push it -- will have to see how it goes.

We are both so relieved to finally be moving forward again and getting back in the fight. It was a frustrating and helpless feeling to be in a forced chemo treatment break as we waited for this SIR treatment to be approved. The goal is to get this done and quickly get back on chemo and Herceptin (have to take a 2 week Herceptin break as well after SIR treatment).

Finally approved - getting started tomorrow!

Alan talked to his contact at the insurance company late yesterday and was told that I had been approved for the SIR Spheres procedure! We need to have this in writing, though, before we can get started with anything, and we waited ALL DAY today to get the letter in hand. I had talked to the nurse coordinator at the hospital earlier in the day, and she said that I could come in tomorrow for the angiogram if we faxed her a copy of the letter before she went home at 4pm. The letter, of course, didn't come through until after 5pm. So I called and left her a voice mail, figuring we'd have to put it off another day. She called me back at 9:30 tonight, and we are on for tomorrow! I have to be there at 6am to check in. They will do some blood work and a CT scan before the angiogram, which will take 2 1/2 to 3 hrs. I should be home sometime in the afternoon or evening tomorrow. Wow, after all the waiting, things are moving fast! Assuming all goes well with the angiogram tomorrow, I should be able to get the SIR Spheres next week. I am so glad to finally get started, and I'm very thankful that my in-laws stuck it out with us so that we can get started on such short notice. After a thoroughly frustrating day (including me hitting a pothole and needing to get new tires for the van), I can breathe a big sigh of relief. Whew!

And we wait ...

We submitted the appeal to our insurance company last Wednesday afternoon. Despite the fact that their procedure for appeal states that they will make a decision within 72 hours of receiving a request, we *still* have not received an answer. When Alan called on Friday to speak to someone about the case, the appeal had just been scanned in and entered into their system, and the person he spoke to seemed to have no knowledge of the 72 hour turnaround time! We think it may have gone before the medical appeals board yesterday, so maybe we'll hear something today or tomorrow. It's so incredibly frustrating! My in-laws arrived three weeks ago to help out, and I still don't know if or when this treatment will happen. If it gets denied again, we have the option to file a second level appeal. I hope it doesn't come to that because who knows how long that will take!

On a brighter note, today is our 13th anniversary! It's hard to believe it's been 13 years since we got married and almost 18 years since we started dating - that's nearly half of my life! We have experienced so much and made a lot of memories over those 18 years. Tonight we plan to celebrate quietly at a nice French restaurant and look forward to our 14th year together. Happy Anniversary to us!

Well, we got an answer ...

Not the one we wanted, though. I got a letter in the mail today with a denial for the SIR Sphere procedure with the reason given that the procedure is "unproven". So now we have to submit an appeal, and once we submit the paperwork for the appeal, they have 72 hrs. to answer. So tonight we are putting together a comprehensive history of all treatments and scans related to the liver tumor(s) to support our request for treatment. Seems like the doctors would have done that already, but if you want something done right, you have to do it yourself. We hope that the appeal will be submitted tomorrow so that we'll have an answer by Friday. I think I will go crazy if I have to wait over another weekend to hear if I can get this treatment! It's been seven weeks since my last chemo (I was due for my next treatment four weeks ago), so I don't feel like I can wait around too much longer. We may have to give up on this and just get the chemoembolization so that I can get started on systemic treatment again. It's just so frustrating that some nameless person at an insurance company, who has never seen me, gets to decide whether I can try this treatment that three of my doctors are recommending as the best course for me to take!

Aaarrgh ...

We didn't get an answer today, so now we have to wait until Monday, at the earliest, to find out if I am approved for the SIR Spheres treatment. We've been assured that things are moving very quickly (as far as these things go), but it sure doesn't feel like it! It's hard being in limbo ... if I had done the chemoembolization, I'd likely have recovered from it by now. I really hope that I'm able to do this treatment, and that it's worth it after all this waiting!!

Still waiting ....

We thought we might get an answer from the insurance people today, but we didn't. We heard from the person who is handling it that they were asking questions and going back to consider it, which is good news. They didn't automatically deny it, so she thinks we may get an approval tomorrow. It sounds like UIC would get me in for the angiogram right away once we get insurance approval, so we are hopeful that we could get the ball rolling early next week.

I've been off of chemo for almost four weeks now, and while I am enjoying a "chemo break", I'm worried the cancer is too. I got a copy of the final PET scan report, and there were 2-3 abdominal lymph nodes that also showed up on the PET. Systemic chemo is the way to treat them, and I can't start that again until a few weeks after the SIR Spheres procedure. Hopefully the Herceptin is keeping them under control for now.

My hair is starting to grow back now that I'm off the Taxol/Carbo. I have tiny little stubby eyelashes and patchy hair on my head. My eyebrows are still MIA, and until the hair on my head fills in, I'm still wearing hats, but I'm making progress!

Fingers crossed ... I'll have good news to report tomorrow!

The Latest Plan (subject to change ... )

We went down to UIC and met with the interventional radiologist there to find out about and be evaluated for treatment with SIR-Spheres. The treatment is similar to the chemoembolization in that it involves threading a catheter in through the femoral artery up to my liver, but instead of injecting chemo directly into the tumor, tiny resin microspheres (8 times the size of a red blood cell) infused with Yttrium-90 would be injected. They would lodge themselves in the capillaries inside the tumor, blocking off blood flow and access to oxygen and nutrients, and they give off radiation for about two weeks, killing the tumor from the inside. The doctor said that the side effects are less than the chemoembolization and that he has seen better results with this procedure. We were convinced that this would be the best option to try and are excited to get started, but first it has to be approved by our insurance. This could be a problem because the procedure is FDA approved for primary liver cancer and metastatic colorectal cancer only. It could take about a week to hear whether it is approved by our insurance. After it is approved (I'm being optimistic and assuming it will be!), I will have to have an angiogram first to map out the blood vessels in the liver and have a "test run" with a protein of a similar size to the microspheres to be sure that they will go where we want them to go and not anywhere else! Then a week later, I will have the procedure with the SIR-Spheres.

So now we are waiting as patiently as possible to hear back from our insurance. I'm still a little concerned about side effects (doctors always seem to minimize side effects ... I think so as not to put the idea into your head and have it be self-fulfilling), but I'm willing to suffer through some pain and nausea for something that holds some promise of reducing the size of this tumor. They said that if the tumor shrinks enough, we could then zap it with radio-frequency ablation, which *could* then get rid of the cancer in my liver. Wow!

16 April - Latest Plans

Well... we had set up the chemoembolization procedure for today, but the plan changed yesterday afternoon! The interventional radiologist that was going to do the chemoemb. talked to a fellow doctor from University of Illinois and ended up recommending that we first consider an alternate form of this treatment which uses radioactive beads instead of chemo. So, instead of doing the chemoemb. today Sarah and I will go discuss the radio-bead embolization with the doctor at U of I and we'll shoot to schedule either that one or the chemoemb. early next week.

PET results and New Treatment Plan

We went in on Monday for the results of the PET scan. I think we were both nervous because there was the possibility that the PET could show that I had mets that we didn't know about, for instance in my lungs. Usually I think it's better to know than not know, but it would have been quite a blow to find out that the disease is more extensive than we thought. Fortunately, the PET did not show anything in my lungs. It did show the one large tumor in my liver, the spots on my spine and one lymph node just above my collarbone. The lymph node is "new" (maybe not new, but it's the first time we've seen it), but it looks small on the scan and my doctor could not feel it when he examined me. So for now, we're not going to worry too much about it. We need to work on this big tumor in my liver.

My doctor recommended a procedure called chemoembolization. It is performed by an interventional radiologist, who threads a catheter up the femoral artery from the groin to the liver, then into the arteries feeding the tumor. Once he determines the catheter is positioned correctly, he'll inject three different chemo drugs mixed with an oil directly into the tumor. This mixture will essentially soak the tumor in a high concentration of chemo, while sparing the rest of the body from the effects of the chemo. Hopefully, this will at least "stun" the tumor and stop it from growing. It could also shrink the tumor, though they are careful to say that they don't expect to eradicate the whole tumor. Just getting it to stop growing would be considered a success.

We met with the interventional radiologist today, and after he explained the procedure to us and answered all of our questions, we scheduled it for next Wednesday. I will stay in the hospital overnight Wednesday night and hopefully come home on Thursday. Alan's parents are coming up on Tuesday to help us out while I'm in the hospital and recovering. I can expect to feel "under the weather" for 2-7 days after the procedure. I have read about side effects including pain, nausea, vomiting and fever, but the doctor didn't think I would have too much trouble with it (they are always so optimistic about side effects!).

One good thing about this procedure is that it can be repeated over and over again, as long as the artery feeding the tumor stays open. So if it is successful and shrinks the tumor, we could repeat it again in a few months and try to shrink it more. For now, though, the plan is to start a new chemo in a few weeks after I've recovered. The new chemo is an oral chemo called Xeloda. I'll have to take several pills every day, but I won't have to sit for hours getting an infusion. I have read of many people having success with Xeloda, so I'm hopeful the chemoembolization and Xeloda will work well for me.

Although I am a little worried about the possibility of pain and nausea from the chemoembolization, I am eager to get moving on a new treatment that could stop the growth of this stubborn liver tumor. And I'll take this over brain surgery any day!

Scan results are in ... good news and bad news

We went in today to get the results of the two scans I had on Friday. The results were mixed. First, the good news ... the pituitary tumor has markedly decreased in size in the 3 1/2 weeks since the last scan. It has shrunk from 1.3 x 1.2 x 1.2 cm down to .7 x .9 x .4 cm! This means that I won't be having surgery on my pituitary, at least not right now. I had resigned myself to the idea that surgery was my best option for treating the tumor, but it appears that surgery is no longer necessary at this time. We will continue to monitor the tumor with MRI and if it should start to grow again, the surgery option will be revisited. I am relieved to be able to put it off for now, though!

Now, the bad news ... the liver tumor has grown significantly over the last three months, and a new 1.8 cm tumor has appeared as well. The large tumor has grown from 4.1 x 4.4 cm to 4.8 x 6.9 cm. Yikes, it is getting big! Too big, according to my oncologist, for radiofrequency ablation and for surgical resection. There was some good news in the report, however. They are now saying that one subcentimeter tumor appears to be a hemangioma (a benign tumor) and that the several small lesions now appear to be cysts. That means that of the two dozen lesions that were on my liver when the mets were diagnosed in Dec. 2006, only two are now considered metastatic tumors.

My oncologist said that while the tumor is large, it is only taking up 5-10% of my liver. The liver doesn't start to lose it's ability to function until 70% is overtaken by tumor, so I am still a long way off from that. My liver function tests all continue to be normal, and I am feeling fine. On Friday, I will have my first whole body PET scan, which uses radioactive glucose to pinpoint the cancer throughout the body. Cancer cells eat up glucose much more rapidly than normal cells, and the PET scanner measures the "uptake" of the radioactive glucose and highlights the hot spots, presumably the areas where there is cancer. My doctor thinks there is a chance the large tumor on my liver could be partly necrotic (dead tissue), and the PET scan can show how active the tumor is. We will meet with my oncologist on Monday to go over the results of the PET scan.

Alan and I were talking today about how, a year ago, news of a 7 cm tumor on my liver would have really freaked us out! But, while I am not happy to hear that the chemo is not working on this tumor, I am really not too worried about it at this point. There are still several options available to treat it, and like I said above, my liver is functioning normally and I'm feeling fine. It's funny how much my (our) perspective has changed over the last year. I used to be such a pessimist, but now I try to look for the positive side to things and count my blessings where I can find them. Life is much less stressful this way :)

Kid Pics and Sarah Update - 28 March

Sam and Elizabeth during our visit to the New Orleans wildlife preserve. We got to see & feed giraffes, antelope, camels and long-horn cows.
Mmmm... chocolate Easter bunny is the best!
Sam looks very happy about this birthday gift! I can almost hear him say "cool!"
Ben's first cello recital! He played Twinkle Twinkle Little Star with his first-year group.

Just before our New Orleans trip, we talked to quite a few doctors to discuss Sarah's pituitary growth: her neurosurgeon & radio-onc at Univ. of Chicago, her oncologist and a radio-onc doctor at Northwest Community hospital where she received radiation treatment. After learning that all of them recommended conventional surgery vs. stereotactic radio-surgery (when it is required due to continued growth or symptoms), Sarah has come around to this point of view now.

The plan is to get another brain MRI and also a liver MRI to see how the Taxol-Carboplatin is working and then go from there. She gets the MRIs tomorrow (Friday) and we should have results on Monday when she goes in for Taxol-Carbo treatment #5. If her liver tumor is larger (no please no), we may very well end up switching her to a different chemo -- so, Monday is a bit of an unknown. If her pituitary growth has growth some more, then she may also end up getting the pituitary surgery as soon as we can schedule it. Otherwise, she'll likely wait until there is either significant growth or there are further symptoms (not all the docs agree that her headache two weeks ago was caused by the pituitary growth) . We don't know what else could have caused it, but it has not come back even after coming off the Decadron. It is still possible that the growth is a benign "adenoma" - in that case the surgery could be all that is needed to reduce the growth's size with no follow-on treatment required except potentially hormone replacement drugs (if any pituitary function is lost)

We're hoping that Taxol-Carbo has done some good for her liver mets. That will be answered Monday, and we know that these things are very unpredictable, so we aren't going in with any expectations one way or the other.

Ski Trip and Update

We went on a ski trip with friends this weekend (to Wisconsin) and had a blast! Sarah and I hadn't been skiing for eight years and of course it was the first time for the boys. They learned quickly and Ben even went down some black slopes -- although that really scared us since he just went as fast as he could, without turning until the bottom. Sam liked skiing so much that he was inconsolable when I told him it was time to go home. :) But, we are all exhausted and I'm sure our muscles will be sore for days...
Sarah gets Taxol-Carbo treatment #4 tomorrow. It's been a tough week in Cancerland: Sarah developed a headache last Tuesday that pretty much stopped her in her tracks. At first we were worried that she had a brain hemorrhage since we'd been warned about it (related to the pituitary met) so she went in to get it checked. A rapid CT showed it wasn't a hemorrhage but she also got results from a more detailed brain MRI which was done last Monday and it showed that the pituitary met had grown slightly (not good - we were hoping to see size reduction due to the chemo). Since there is not much room near the pituitary gland, the docs believe that this small size increase is probably causing the headaches. She's now taking the steroid Decadron to control any swelling/inflammation and it made the headaches go away for now, but we've got to decide what to do about the pituitary met now. Options are radiation surgery or conventional surgery. We'll be talking to the neurosurgeon at University of Chicago cancer center over the next week to discuss it.
It feels like we're back in limbo again, unfortunately a familiar feeling now: we hope that Taxol-Carbo is pushing back Sarah's cancer, but all we know today is that her tumor markers are not down yet and her brain met didn't get smaller. We won't really know how effective this stuff is until we get a liver MRI done which is planned for around 2.5 weeks from now. That's a long wait, but these days Sarah and I both try to avoid worrying too much until we actually have test results or other new information.

We should know better by now ...

We should know better than to make assumptions about the meanings of test results before we've talked to the doctors ... they're the ones with the years of medical training after all! The tumor markers we were worried about were not a cause for concern for my doctor at all. He said that usually they wouldn't even check tumor markers until after four treatments, but he wanted to check them after two, just to be sure they weren't skyrocketing. I'm not sure where we got the idea that they should have dropped quite a bit (wishful thinking, perhaps?), but it isn't the first time we've assumed incorrectly and worried ourselves needlessly. Maybe someday we'll learn not to do that to ourselves?!?

My white blood count was low yesterday (as expected), so I got a neupogen shot to bring it back up. I also scheduled a brain MRI for Monday to get a look at the pituitary tumor. I'll get results next Thursday, and depending on what it shows, we'll go back to see the neurosurgeon at U of Chicago. I discussed things with my radiation oncologist last week, and he thought that it sounded like something he could treat with stereotactic radiosurgery (a highly focused beam of radiation given in one dose rather than fractionated over several days or weeks like the radiation I had to the chest wall after my mastectomy) if it started causing symptoms (vision problems, headaches, etc.). I'm not having any symptoms currently - the headaches have disappeared, so I'm hopeful that the MRI will show that the tumor has shrunk again. But if not, I think we have some good treatment options to consider.

I will get one more Taxol/Carboplatin/Herceptin treatment on March 10th and then I'll get another liver MRI to see how that treatment is working. I'm starting to get some neuropathy (numbness & tingling) in my fingertips and the bottom of my feet, so I'll only be able to tolerate a few more treatments before I have to discontinue Taxol. Hopefully, the TCH will do its job and knock down the liver tumors before that happens. My radiation oncologist also said that if most of the tumors on my liver stay small and stable, and just the one is growing, I could be a candidate for radiofrequency ablation on that one tumor. So we're hoping for the best with this treatment, but I'm encouraged that there are still several options available to me going forward. One step at a time, though ... I try not to worry about the future too much because as Alan said ... it rarely turns out the way we think it will anyway!

21 Feb - It Never Goes Quite Like You Think

Got another cancer curve-ball yesterday: Sarah called and got her tumor marker results and instead of going way down like we expected (because Taxol-Carboplatin is one of the strongest chemo combos), one number held steady and one went up a bit.
We're not really sure what to make of it yet. CA27-29 went from 95.2 to 91.6 (normal is <14) and CEA went up from 49.1 to 58.4 (normal is <2.5). This may not mean that the chemo isn't working, but it definitely introduces some doubt. We haven't talked to the oncologist about it yet but expect that we'll need another set of tumor markers and an MRI of Sarah's liver to better understand what the deal is before making any treatment change decisions. More to follow next week. Nothing can be done for the next two weeks because Sarah has to recover from this past Monday's Taxol-Carbo dose before we can do something different - that gives us some time to talk it through with the docs.

20 Feb Update

Time for a long-overdue update tonight...
Sarah and I had a great Valentine's Day - got to go out together for dinner and just enjoy each other's company for a while. Then this last weekend was pretty full for Ben and me: we went to the Indian Guides' winter camp-out (yes, we slept in heated cabins!). There was plenty of snow so we had a blast sledding and doing general winter stuff outdoors!
Sarah and I went in to see the UC neurosurgeon and also a UC radiation oncologist and both agreed that if we could manage the anxiety over Sarah having a possible brain met, we should wait until another scan shows us how this pituitary growth is reacting to the latest chemo. That next scan (a brain MRI) will be done in a few weeks so we will gather the experts once we have the results. Also, we discussed treatment options with Sarah's main oncologist and we much better understand the risk of this met spreading: since this pituitary met (?) formed near small "end-of-the-line" blood vessels, it is unlikely to spread to other areas of the brain via the bloodstream which is one of the few main modes of spread. It is expected to just grow or shrink at its current location at the pituitary. Future brain mets, if any, would have to come through the main blood supply from the body rather than from the pituitary growth. This was a great relief to both of us and lowered the sense of urgency on brain surgery, especially if the growth is being controlled by chemo.
Also, Sarah just got her 3rd treatment of Taxol/Carboplatin this Monday and is managing through the first few days of "chemo week." She seems to be weathering it ok except for fatigue in the evenings. Thankfully, very little nausea this time. This is also the cycle when tumor markers were run, so we should get those results tomorrow (Wed) and have some indication of how effective this chemo is so far. We're hoping for low numbers!

Ben's new smile

Ben finally lost his first front tooth! It had been loose for weeks and was barely hanging on when we convinced him to wiggle it out tonight. He was so proud of himself ... he showed everyone at our church's pancake supper tonight. You can see the new gap in the picture above.

We've got a huge winter storm bearing down on us tonight. It will most likely be a snow day tomorrow, which means I won't make it to my appointments at U of Chicago. I talked to my oncologist yesterday, who surprised me with his enthusiasm about the latest blood test results. He thought it was great news that my prolactin levels are normal again and that it indicates that the chemo is controlling the tumor ... no need to do anything at this point. He feels strongly that I should not do radiation and that we can keep an eye on things with MRIs and repeat prolactin levels. He also told me that the chemo I'm doing does cross the blood/brain barrier (I could swear I've been told and read that it does not ???). Anyway, it looks like I will have to wait another week to talk to the neurosurgeon and get his opinion. But I just remembered that I have a check-up with my radiation oncologist scheduled for next Tuesday (an appointment I made 6 months ago!), so I am looking forward to bringing him up to speed and getting his opinion before I go back to U of C.

As you can see, things are pretty confusing around here right now, but I think it is slowly becoming apparent that the tumor on my pituitary is most likely a breast cancer met. Brain mets have been my biggest fear all along, and now it seems I've been living with one for almost a year (probably longer). Thankfully this one hasn't spread and isn't causing any of the scary symptoms that many brain mets do. So I think I'll hold off on freaking out and count my blessings for now :)

So much for the pituitary plan ...

I got a call yesterday from the endocrinologist's fellow. They took some blood while I was there last Wednesday to run their own hormone level tests and got the results this week. My prolactin levels were normal as were all other hormone levels. This was before I started taking the Dostinex (drug to lower prolactin levels if this were a prolactinoma). So that pretty much rules out the possibility of a prolactinoma, and they think it is most likely a breast cancer met. It could still be a non-secreting benign adenoma, but there is no way to know without having the surgery. I think they are leaning towards met because it seems to be shrinking and growing, possibly due to chemo (though chemo is not thought to cross the blood/brain barrier??). The endocrinologist doesn't think I need to have the surgery right away since I'm not having any symptoms (blurry vision, severe headaches or wacky hormone levels). He wants to see me in 6 months. The neurosurgeon wants to see me next week and wants me to meet with a radiation oncologist. I suspect he will recommend having the surgery now that a prolactinoma has been ruled out. I'm not sure why he wants me to see the radiation oncologist, but I guess I'll find out next Wednesday. I'm waiting for a call back from my medical oncologist to get his opinion, but I know that he does not think this is a breast cancer met. So he'll probably recommend against having the surgery. I don't know what to think, but I will wait to get all the opinions before making a decision.

In other news, I had treatment #2 on Monday. This round has been a bit easier with the fatigue and less grogginess, but the nausea is back, though not too badly. Steroids kept me up most of Sunday night, but I've managed to make up for most of that sleep over the past two nights. I lost huge hunks of hair in the shower on Saturday, so I'm back to the bald look:



It's not so much fun being bald in the middle of winter in Chicago. Temps today started at 2F with a wind chill of -19F! Currently it's up to 11F with a wind chill of -4F. So I have to wear a hat at all times, even while sleeping, but I do save time in the shower and after with no hair to wash/condition/dry/style :)

For now, we are going to sit tight and wait for all the opinions to come in on the pituitary tumor. It seems that the surgery is inevitable, but I don't want to rush into it and compromise the systemic treatment for the liver tumor, which I feel is a bigger threat to my health at this point. The surgery is "minimally invasive", but it's still brain surgery! We'll post another update once I get through all the doctor's appointments next week. Thank you all so much for all the support ... it really helps to know so many people are thinking of me and praying for me!

24 Jan - The Pituitary Plan

Yesterday I went with Sarah to see a neurosurgeon and an endocrinologist down at the University of Chicago Cancer Center and both agreed that Sarah's pituitary adenoma was not an immediate threat and that we have the time to try a drug treatment. She started on Dostinex today (twice a week pill with few side effects) and she'll go on with that for six weeks (in parallel with her chemo) and then do another brain MRI to see how the pituitary growth has changed. At that point we should know if Sarah will ultimately need to have the growth surgically removed.
Sam and Ben are doing fine. Ben's still playing cello and I actually will be swapping his instrument out for one in the next size up since he's grown a bit since last October. He's playing Twinkle Twinkle pretty well. :)

22 Jan - Overdue Update

Here's a quick update since it has been a while since the last post - Sarah came through the first Taxol-Carboplatin treatment fairly well. No significant nausea after this first one, but definitely fatigue which usually set in hardest near the end of the day. Sarah also felt "groggy" for a week. She's feeling fine now as we wait for the next treatment.
Sarah also saw a neuro-oncologist last week and we'll be seeing a Neuro-surgeon this Wednesday to discuss what the treatment options are for her pituitary macroadenoma. Because her prolactin levels were not super-high (although above normal) and the other hormone levels were normal, the adenoma is either a typical benign "non-secreting" pituitary growth or it's a breast cancer met (which is much less likely). Options will probably range from no treatment and periodic MRI checks to biopsy and/or removal through neurosurgery. We'll know more over the following weeks...
On a much less dramatic note, I had Lasik eye surgery last Friday and it went great. I could see 20-20 the next day and my eyes are healing up nicely - great to be free of glasses and contacts after all these years.
I'll post an update after we've talked to the neurosurgeon.

Starting a New Treatment and More Health News

The new treatment is starting today, and it is a long one! I will have to be "in the chair" for nearly 7 hours! So I thought I'd try my hand at some blogging and give an update on the latest news from cancerland. I had been having mild headaches for a few weeks ... didn't think much of them at first, but I started to notice that they were always on the left side of my head, moving from above my eye to the top of my head. I mentioned them to my doctor last week, and because the cancer had progressed in my liver, there was a chance it could have progressed elsewhere (like my brain). So he sent me for an MRI of my brain and pituitary last Thursday.

When I got a message that my doctor had called me at home this morning right before I was to come in for treatment, I knew they had found something. Fortunately, there are no new spots on my brain .... whew! But the tumor on my pituitary has grown considerably since the last scan (three months ago). It is laying on my optic nerve, and although I am not currently having any vision problems, it could cause problems in the future, so I am going to go see a neurosurgeon to discuss medical and surgical options. Although the radiologist's report says that "the marked interval enlargement since 9/2007 is highly suggestive of pituitary metastasis", my doctor assures me that it is "extremely, extremely, extremely unlikely" that it is, due to the fact that it is a solitary tumor and it's been there for at least 9 months with no new brain tumors or lesions developing. I have contacted a neurosurgeon at the University of Chicago (one of the top 10 cancer centers in the US), who specializes in neuro-oncology and pituitary tumors. Seems like I'd be in good hands there ... I am waiting for a call back, but I'm going to have my oncologist call them and see if he can get them to put a rush on it.

I've got about one more hour to kill (good thing they have wifi here!) and then we'll see how hard this treatment is on me. As Alan said before, I will lose my hair again (maybe the third time is the charm?) and fatigue is a given. Muscle aches and possibly neuropathy in my hands and feet. But I'm willing to do whatever it takes. Although the news on the brain MRI wasn't what I was hoping for, it could have been much worse, so I'm counting my blessings. And with the every three weeks schedule, I don't have to come back to the onc's office until next Thursday for blood work. That will be the longest I've gone between visits to the onc since I started back in May ... gotta count the small victories where I can find them, I figure :)

White New Years and Time for New Treatment

The snow is really coming down - we didn't have a White Christmas but we'll have a White New Years Eve! We're also glad to have Elizabeth here visiting and celebrating with us.

Sarah and I went to get the results of her MRI earlier today and it was about what we expected after seeing those tumor marker results: her cancer has advanced and we need to start a new treatment. On the positive side the smaller liver lesions have not gotten bigger, but on the not-good side the largest one has tripled in size in the last three months and is now 4.4cm wide. So, Gemzar is out and Sarah will start something new. We're going to firm up the treatment plan with the doc on Thursday but it looks like a heavy dose of Taxol + Carboplatin every three weeks will be the next step. Back to hair loss, nausea and possibly neuropathy in extremities. Also, Sarah will begin taking Zolodex again to ensure that her estrogen levels are low (estrogen makes her cancer grow faster) and she'll continue taking Herceptin and Zometa.

Since we were expecting something like this, it seems to have softened the blow of this bad news a bit. But, we also know that the relatively "quiet" and stable period over the past 6 months will come to an end when Sarah begins this more intense chemo treatment next Monday. Sarah is determined to do whatever it takes to fight her cancer and we will continue to be focused on living today while staying hopeful for the future.

Christmas and New News

Here's Ben giving Santa a big hug when he came to visit before Christmas as he was passing through the neighborhood. Next we see the boys making cookies for Santa. Then there's Sam in his chef's costume as he tests out his new toy kitchen. Overall, the Christmas chaos ended well and we all had fun! The kids made out like bandits on the present front and the grown-ups didn't do too badly either.

On a more sober note, Sarah finally got tumor marker results at the doc's office on Christmas Eve and her numbers had gone up. CEA went from 3 up to 42 and CA27-29 went from 15 up to 70. This likely indicates that Gemzar is losing its effectiveness for her. Sarah's going to get a new MRI asap to see what's going on in her liver - scan Friday, results Monday. If the mets are growing again then she'll likely start on a new chemo right away. Sarah has been on Gemzar for approx. 6 months and her oncologist says that second-line chemo often only maintains efficacy for around 4.5 months on average. That doesn't sound good at all, but he says we still have a list of other chemo drugs to try and it's likely time to move on to the next one. In the back of our minds is the knowledge that several chemo drugs have not worked at all for Sarah so far... so it looks like we're back on the cancer roller coaster and anxious about the Monday doc appt.

Xmas Tree

We went to a local christmas tree farm (called "Ben's Xmas Tree Farm!") - here are a few pics that show what that experience was like. We all loved riding the horse-drawn carriage and then picking out the tree and cutting it down. There was also hot chocolate in the cashier's hut which was a big hit with the kids! With all the snow, this was really a just-about perfect xmas tree experience.
We're all doing fine and preparing for the holidays. What a busy time! Sarah just got chemo again today (12/18) and is doing ok. We expect to get a set of tumor markers next week from her blood work-up today.
Here are two links to a funny Lopez family snowball-fight and elf dance. :)
http://www.jibjab.com/sendables/view/Qlai5caLCcEdaVahFLponROx

http://www.elfyourself.com/?id=1464871654

Snow!

We finally got a bit of snow this year! School was canceled and the kids got to play out in the back yard, which they loved.
The Christmas season is really going very quickly - seems like a head-long rush towards 25 December and we're barely keeping up.

New Orleans Trip

Here we are eating Beignets at Cafe Du Monde in downtown New Orleans. We went down to be at Thomas and Kerry's wedding reception, which was a great event! Also got a great pic of Thomas and Sarah in Jackson Square. Chemo week for Sarah but she felt pretty good because we were there at the end of the week.

Leaves!

We got a chance again this year to make a big leaf pile and jump in to it. Ben and Sam also like it when I throw them on top of the pile. Fun!

We had Ben's birthday party at a place that has many huge inflatable play structures - everyone loved it... even the grown-ups got in on the action!

15 Nov

A shot from Homecoming at Rice University.

Here's a mini Lopez family reunion in Houston.

The kids are thinking of getting their MBA at Rice!

It's been a busy few weeks. We had a great trip back to Houston for my Rice U 15yr reunion during homecoming. We saw many friends and family, too!
Sarah's feeling ok as she continues to get weekly Gemzar chemo. The only recent thing that has changed is that we had a radiologist take another look at her last MRI in order to compare it to her last one (it had been compared to an earlier one from December 06 due to where we had it done). The new comparison seems to indicate that there has been no change in her liver mets since starting Gemzar. Or course, we would have liked to hear that there was clear shrinkage after treatment with this drug... but we are thankful that Gemzar is clearly protecting Sarah from progression. And this together with the very low tumor markers + satisfactory liver function + less side effects is still a pretty good place for now. So, we'll continue with Gemzar while monitoring tumor markers and looking for another MRI in January to get a better read on how her mets are responding to this chemo drug.

Halloween Pics

Sam was a very cute dragon with a tail & wings, and Ben went as Harry Potter - which I think looked pretty good! Trick or Treating went great and they got loads of candy. Sam really got in to it this year and had a ball.

29 October

Ben and I went to our Fall Campout with the Indian Guides Program and we had a great time! Tiring weekend, but worth it. Ben even got to wear his Halloween costume (Harry Potter) which was a big hit with everyone when we did camp trick-or-treating.
Sarah got another Gemzar treatement today and is working her way through the beginning-of-the-week yuckies. We're preparing to head back to Rice for our homecoming soon which is our next larger trip.

17 Oct Update

We had a very eventful Columbus Day weekend - Sarah went to visit Leslie and Ken in Lake Tahoe and I took the boys to see Grandpa and Oma in San Antonio. We also made a quick trip down to Padre Island where Ben and Sam had a great time.
Sarah ended up getting another treatment this past Monday although we expected this to be an "off" week. Although we're grateful for every week we can fight back with the Gemzar, she is not looking forward to having it feel like a 3rd week of treatment. She's had some nausea and fatigue so far - manageable but definitely not fun. Other than that, we are all doing ok and preparing for Halloween! Ben will be Harry Potter and we're still working on Sam's costume.

1 Oct - Good MRI Results

First here's a pic of Ben after a Cajun lunch we did at church last weekend. He really digs those beads... We've been helping a church in New Orleans by sending money to rebuild - and this weekend they come up to cook us some authentic Cajun food and invited our parish to lunch!
Sarah and I went to go get the MRI results - there was good news all around. Her pituitary adenoma shrank significantly and her pituitary is now considered "normal" size. No change in her spine (that's good) and all other organs except the liver are clear. The liver mets are smaller and fewer in size overall (yes!). So, she'll stick to this chemo drug weekly unless something changes. The doc will continue to monitor tumor markers in her blood and also liver enzymes monthly to verify that the treatment continues to work. Assuming all goes well, the next set of MRIs would be six months from now.
It is a great feeling to know that we've finally found something that has halted the relentless advance of Sarah's breast cancer. There are no guarantees for how long this will work, but we are just celebrating "today" and hoping it will be a long time! Gotta take it one step at a time and focus on life.

29 Sept Update

Quick update since it's been a while since I posted. Sarah didn't get chemo this week but did get her MRIs done of her brain, abdomen and spine. We'll be going in together next Monday to get the results. Keeping our fingers very crossed and hoping for confirmation that her mets are shrinking due to the Gemzar chemo treatments. Ben and Sam are both doing well in school. Ben is still playing his weekly soccer games and I think we'll let him start playing cello, which he saw at a school demo and showed quite an interest in. More to follow after Monday...

14 Sept Update

Quick update today - here's a pic of Ben and Sam looking forward to a school day. Sarah got her treatment on Tuesday this week and is doing ok. She's transitioning to Monday treatments so that it fits better with Sam's pre-school schedule. It got cold this week in Chicago as a reminder that the summer really is coming to an end - tonight it's in the high 40's outside.

6 Sept - Vacation Pics

We had an fun and relaxing time in Minocqua for our vacation last week. In these pics, we're at an Indian village, fishing, at a wildlife park, and touring the lakes on a small motor boat. Everyone had a great time and we really enjoyed our get-away.
Sarah got another set of tumor marker results and the numbers were promising - another decline in levels which took one number (CA27-29) down to normal levels and the other (CEA) almost to normal levels. This should indicate that the liver mets are stabilized and maybe even shrinking. We'll know for sure when the next set of MRIs are done at the end of the month, but we are celebrating this trend for now and enjoying a break from the constant anxiety we felt earlier this year. Sarah got another Gemzar dose when we got back from vacation last week but didn't feel too bad from it (and she felt pretty good during our vacation as well despite it being a chemo week!). Ironically, she feels worse now during her off-week because she got a white and red blood cell booster shot instead... sigh. Overall, it seems that Sarah is tolerating the Gemzar treatments much better, although I think some part of it is that she's gotten more used to the ebb and flow of fatigue and sort-of nausea under this drug. Chemo side effects seem to be almost as unpredictable as cancer itself - different from week to week.
On a final note, this is Ben's first week of school (first grade) and he loves it so far. During kindergarten he informed me that he would not be attending first grade, but he seems very happy with his "decision" to go afterall. :) Sam is also excited about starting pre-school which kicks off next week.