The Six Weeks

The brain scan that I talked about on my last post happened two weeks ago to try to understand how effective the last treatment (not the current treatment, which is Taxol) was on the cancer in the brain.  A week ago we were given the results.

They found 8 more tumors in Anne-Marie's brain, which brings the total to 10.

It's hard to find any comfort in the oncologist telling us they are all "small" brain tumors, but we'll take all the comfort we can get while understanding very clearly that Anne-Marie is under full assault by this deadly disease.

The oncologist has formed a plan to continue the Taxol treatment for one more three-week cycle then on the fourth week, another set of scans will be performed.  Last week was Taxol treatment #3, this week is a week off, then three more weeks of Taxol, then scans the next week, for a total of six weeks.

Dr. Solti has told us that she does not expect the Taxol to help the tumors in the brain but wants to continue through the next cycle to give some relief from the tumors in Anne-Marie's lungs.

The proposed treatment after week six is to return to the Xeloda/Tykerb chemo pill regimen that happened back in 2018.  It is the most ruthless chemo we've faced in the entire 14 years.

We are between the jaws of two challenges.  The doctors are already telling us it won't happen, but we need the scans to come back clear.  Our family appreciates your prayers during this time.

Five weeks to go.

February 2019 scan results (and how our 10-year-old's science project looks like it was done by a 10-year-old)

On Thursday, February 7 and Monday, February 11, Anne-Marie had her latest set of scans to see the progress of her treatment.  Imaging and radiology at PeaceHealth Southwest Medical Center performed a bone scan, CT scan, along with a pelvis, chest and brain MRI.

Dr. Smith met with us yesterday to discuss the results of the scans and told us that almost all areas are stable, but there are two small spots in Anne-Marie's right lung that have doubled in size.  Taking into consideration the sarcoid diagnosis from two years ago, this may be nothing.  Dr. Smith wants us to get a biopsy (bronchoscopy, not needle, thankfully) some time in the next two weeks and from there, we'll meet and discuss what's next.

There are bigger-picture implications that come along with this information.  The team at Compass Oncology has let us know that the Tykerb/Xeloda chemo treatment that Anne-Marie has been on since May is usually discontinued at some point.  This is either because the side effects are too much for the patient to take or because the cancer cells that are unresponsive to the treatment--which is inevitable--begin to multiply and become the majority, rendering the treatment ineffective.

We are on the edge of both of these.  The side effects have been beyond anything we've experienced in this almost 13 years.  It's been extreme enough that just a description of what Anne-Marie's going through has been enough for Dr. Smith to reduce the dosage.  (In other words, he wasn't asking permission.)  This happened about four times over the course of nine months and now the dosage is less than half of what it was back in May.  

Regardless of the reduction, side effects have continued to intensify due to the cumulative nature of the chemo treatment.  The longer you take it, the more your body reacts to it.

Combine the side effect situation with the scans showing stability rather than reduction and now we're seriously considering a treatment switch, but the biopsy will let us know for sure.

For now, Dr. Smith has ordered Anne-Marie to stop all chemo treatment, telling her she "deserves a break".  So very true.  We're hoping the time off will allow her to heal up and reclaim some of her life.

We are about 13 months into the cancer siege.  And 13 months considered in light of 13 years allows a lot of perspective.  We've had so many good times and so many hard times in that stretch that I don't want to overstate everything just because it's more recent.  

But the footrace from recurrence to radiation to accidental discovery of brain tumors to Failed Treatment Plan One to Failed Treatment Plan Two to Worst Treatment Ever has been the most exhausting time of our lives.  (Now, take into consideration that it's partly due to us trying to do a 800 square foot remodel/addition to our house at the same time.  Wasn't planned that way, but never ever try that, boys and girls.  Ever.)

Here's the moment of joy in all of this: Tykerb wasn't supposed to work in the first place.  We already tried it in 2012 and it was the biggest chemo failure we've ever had.  When we were given the treatment plan last April, we made it clear to Dr. Smith that it wasn't an acceptable option, but he held his ground and just told us "maybe this time it will be different".  Well, it was.  

And during the time Anne-Marie has been taking it, PARP inhibitors--which I'll talk more about later if we go that direction--have come into major use and become a viable alternative for treatment.  We didn't have time to even worry about it, but pieces have fallen into place in the background.  That's less energy and worry for us, which can't be a bad thing.

So, yeah, our house isn't clean, our IRAs aren't maxed out, our meals are served on Chinet instead of china and our 10-year-old's science project looks like it was done by a 10-year-old.  I seem to never get over wanting to know how it's all gonna turn out, but I don't know.  What I do know is that God loves us and that He knows.  He is the Hero in this story.

May 2018

In our house, everything happens in May.

For instance, May 10, 12 and 18 are diagnosis days 2 (2012), 1 (2006) and 3 (2016) respectively.  When diagnosis day 4 came in January of this year, it was a huge shock, not just because it was shocking, but because it's supposed to happen in May.

This year's May in particular started with Anne-Marie's Xeloda/Tykerb treatment going not so well.  If you've been following this story, this was no surprise.  As I posted a few weeks ago, Dr. Smith reduced Anne-Marie's dose of Tykerb by 20% and we went away hoping.

Over the next week, things started to improve and Anne-Marie's strength started to return.  We went to church as a family on Mother's day and by the time we hit the 19th, Anne-Marie was able to attend Ethiopian Orphan Relief's annual charity auction (both times in a wheelchair, but still).  We had such a great time, I forgot to take pictures.  Whatever.  I got a cool painting at the auction and Anne-Marie was celebrated with all the other great moms at church.

My cool painting from Ethiopia

The 24th was the revised chemo plan follow-up with Dr. Smith.  Let's just say he was thrilled with the progress made inside that time.  This means the plan is a plan for now.  The side effects are still a battle, but if we can prove this is working, we will stick with it.  It's a good thing the chemo plan worked as well as it did because the kids year-end concert for school was the night of the follow-up appointment.  The kids did great.  (Tiny video of Mariah below.)

But that was just one side of things because it was Anne-Marie's birthday week.  I think she had four different birthday parties.  Tuesday she was at a friend's house for a birthday lunch, Thursday she was taken out for lunch and dessert, Saturday was a giant birthday breakfast for friends and Monday another big breakfast party with family.  Yeah, she's spoiled.  She even got a song this year, because being in love is worth looking like a dummy.  (I actually sing more than most of you realize.  Happy 39th, Anne-Marie.)

I'm sure there's a few other things that happened last month, but I'm tired of thinking of stuff and so I'm going to stop typing now.  Next for us is an oncologist consult on 6/13 to track the progress of the chemo and a brain MRI on 6/27 to better understand the effectiveness of April's gamma knife surgery.

Tykerb's 2nd chance

Because of Anne-Marie's previous experience with the Tykerb chemotherapy pill, trying it again is something we never thought would happen.  The pill had been discussed multiple times in the last six years and always comes up when the "medications to avoid" (is that what it's called?) list gets read off/written down at the hospital.

"Tykerb?  What's that?"
"Oh it's a chemo pill."

We've had the conversation dozens of times.  No one knows what it is unless they know what it is.  Then they know.

Now six years after it was prescribed by Dr. Korde from SCCA, Dr. Smith decided to prescribe it, in combination with Xeloda, hoping for the best.  Well, so far, it's been hard, but bearable.  Anne-Marie had a tough few days to start--and even went off it to recover for a day--but she has somewhat normalized with the help of the doctor.  Dr. Smith gave Anne-Marie the OK to cut the prescribed dose of Tykerb down by 20%.

This is good news because that means we have an actual treatment plan.  If Anne-Marie can continue to tolerate the treatment we could have a "routine" for the next several months.  The stomach sickness and queasiness has been hard, but being a month (and two months) post surgery has brought her strength up and allowed her to be on her feet more throughout the day.

She will continue on the Xeloda/Tykerb (for the brain) and Faslodex (for the lungs) until the team of doctors say otherwise.  Scans of the bones will be quarterly and a brain scan will happen in about a month.  This should tell us a lot about whether the treatment is effective.

Gamma rays (and the return of Tykerb)

Orignally, we were scheduled for the 14th surgery--the removal of the 2nd brain tumor--on Thursday, April 5, but our team of doctors canceled that and presented us with a different plan.

On April 3, our radiologist presented us with an alternative to conventional brain surgery.  What they presented to us is a procedure called Gamma Knife Radio Surgery.  This procedure involves synthetically produced supernovas that force the decay of cobalt which gives off an afterglow of gamma ray photons.  Seriously.  Or something like that.

Not to be flippant, but this kind of science is most famously known for accidently turning Dr. Bruce Banner into the Incredible Hulk.

Gamma Rays

Well, science fiction has become reality and the gamma rays procduced by the cobalt in the gamma knife machine are used to burn up cancer cells in the brain.  200 beams of gamma are blasted from the machine through a special helmet that focuses the rays toward the exact location of the tumor and somehow misses all the other healthy cells in the brain (the team of doctors has assured us of this).  The effectiveness is estimated to be at about 90% of the traditional surgery.

Conventional surgery would involve a few hours in the OR, two days in the ICU and another day or two in the hospital beyond that with a month recovery at home.  Gamma knife involves three to six hours in the machine and then straight home to recover for one day.  You can see why we chose the latter.

By the time most of you read this post, we will already be at the Gamma Knife Center at Providence Portland.  The idea of being part of what seems like a mad science experiment* makes us both a little anxious, but after going through the last five weeks following surgery, we are willing to give it a shot.

We will take it easy these next few days as Anne-Marie recovers.  But there's two more things:

First, Anne-Marie has been place on a schedule of normal, traditional radiation that has nothing gamma about it.  She goes in every morning and will be for the next two weeks to help alleviate the pain from one of her ribs on the right-hand side.  Thankfully, we get tomorrow (the day of gamma knife) off.

Second, the advanced pathology on the first brain tumor revealed that it was not the same type of cancer as what was found back in early March.  In other words, the cancer has mutated in some places but not others, so our original plan of treating with Herceptin/Perjeta was scrapped and now the second plan of treating with Ibrance has ended.

The cancer we are dealing with can only be starved out by certain targeted chemotherapies, so our new option is a combined chemo treatment of Xeloda and Lapatinib.  Lapatinib is also known as Tykerb.  If some of you have been reading this blog for a long time, you may remember our horror stories (<<<click the link and read about it) of Anne-Marie's first attempt at Tykerb.  We were pretty shaken to hear that's what the doctors were recommending. 

The issue that is really driving the risky decision to try this chemo is caused by the blood-brain barrier.  There is a shield that your body has that protects your brain from any nasty invaders that also prevents treatment from reaching where it's needed if you have something that needs fixed.  Tykerb is the only approved treatment for this.  So it needs to work.

They are choosing to frame this attempt with the frighteningly-optimistic philosophy of "maybe this time will be different."  Considering the gravity of the situation, this seems like pretty sound logic to me.

Tykerb starts sometime during the coming week.  God help us.

*it's been around since the late 70's, so not really

Kicking Tykerb to the curb

And we're done.

Our first attempt to treat Anne-Marie's cancer is done and over.  A couple of weeks ago, Tykerb (the pill-form chemo treatment) made Anne-Marie break out in a rash all over.  This was not just any rash.  It was a rash that nearly incapacitated her for ten days.

After lowering the dosage three times, we figured that balance and harmony had been acheived and we could set a schedule for next couple of months.  We got the calendar all figured out.  Anne-Marie only had to go to Seattle Cancer Care every three weeks and take three chemo pills every night.

It took three or four days to realize her body was saying, "I don't think so."  By the time Anne-Marie quit taking Tykerb, the damage was done.  She had a rash all over her body that wouldn't go away and began to lose her hair.  Even though she quit taking the pills, the rash lingered on for another week.

Let's fast-forward from three weeks ago to today.  The doctor says that--putting aside the horrible side effects--the treatment was working.  The tumor has shrunk by about 30%.

The question is whether or not it was Tykerb or Herceptin (Anne-Marie's other treatment she gets at the clinic every third week) killing the cancer.  Dr. Korde is counting on Herceptin only to eliminate the tumor prior to surgery.  Because of this, the doctor is recommending doing Herceptin weekly (starting 9/6) instead of every three weeks.

We don't know how to work this out with our schedule yet, but there's probably more good news here than bad.

Checkup and Herceptin

Today I had a checkup with Dr. Korde and my second Herceptin treatment.  Thankfully, I did not have any problems with the Herceptin this time, but I did come home and sleep for three hours!  That stuff just wears me out!  A few days ago, Dr. Korde had instructed me to stop taking the Tykerb pills once again due to troublesome side effects I was having.  It has been a difficult balancing act trying to figure out how much medication to take to lessen the side effects versus too much extra medication causing a whole different set of side effects.  Today we discussed how I could better manage the symptoms and medications.  I can't say that we have it figured out completely, but hopefully it will be better.

Dr. Korde also believes that my tumor has shrunk just from the small amount of treatment I've already had. That is really great news, especially since today was only my second Herceptin and I've stopped, then started, then stopped taking Tykerb again in that short span of time!  She says I may not need to take Tykerb after the surgery, especially considering it's effect on me, but she may want me to continue Herceptin for two years instead of just one. 
 
 I have a lot of difficult decisions to make in the coming months regarding the next phase of treatment after surgery.  I received some very tough news Friday at my consult with the plastic surgeon at University Medical Center in Seattle. What they are recommending for me to do is physically and emotionally difficult, mostly because of what I've already been through the first time around.  It's a long story and a bit personal to convey on here to everyone, but it has to do with radiation and RE-reconstructive plastic surgery.  I'm trying to figure out how I want to proceed, especially since the news was worse than I thought it was going to be.  There are pros and cons, of course.  I know what THEY want me to do, but I ultimately have to make the decision.  So puhleeeze don't start offering me opinions and advice, haha!  =)

Tykerb Treatment and Effects

On July 7th I began taking Tykerb, which is a chemo pill.  The dosage Dr. Korde prescribed was 4 (very large) pills at once daily.  The normal dose is 5 pills, but since I am a smaller-than-average person, my dose was 4.  I woke up VERY sick to my stomach the next morning and it continued throughout that day into the next couple days.  I became dehydrated and weak.  Monday morning Dr. Korde's nurse emailed me to ask how I was doing with side effects of the pill.  I explained the situation and she told me to stop taking the pills until further notice and to keep in touch about how I was feeling.  It took several days for my body to recover from the side effects (including a mysterious case of vertigo and nausea), so I didn't end up resuming the medication until Friday night, July 13th.

Dr. Korde lowered my dose down to 3 pills at once daily.  I still became very sick even with the lowered dose, so they began having me take another medication twice daily to counteract the effects of the Tykerb on my stomach. Now I am starting to develop another common side effect of Tykerb, which is a rash.  It is only on my face so far and is somewhat itchy.  I'm not sure how severe or widespread it will become, but time will tell.  I have been blessed never to have had acne (even in my teen years), so this is not going to be fun for me.  I am also developing mouth sores, which are a common side effect also.  The nurse called in a prescription mouth rinse that should at the very least help me be more comfortable when eating.  It contains a numbing medication. 

Life's not too fun or comfortable these days, but I'm thankful to be alive! Taking it one day at a time. =)

Starting Treatment (Herceptin and Tykerb)

Update from Anne-Marie's Facebook statuses this past weekend.

Friday, July 6th:

It's warm outside, but I'm missing the electric blanket. Home and in bed with severe chills and body aches after my 1st Herceptin tx this afternoon. I looked like a mummy during the tx due to being swaddled with mounds of oven-warmed blankets. 

Saturday, July 7th:

Started my chemo pill Rx last night. I was very nervous to take it and had a few tears. Been really sick to my stomach all day long today. The dosage may need to be adjusted. Average dose is 5 huge pills at a time daily. They started me at 4 since I'm a small person. I'm thinking maybe 3 would be better?!? Need to contact my Dr tomorrow.