More changes!!...Big ones.

This picture is from a recent zip line tour I went on. Great fun! I just think this scene is so beautiful and since I couldn't get it without our guide being in it, I just went ahead and got a picture of him, too. I really have no reason to throw this picture in here other than the fact that the first picture I post ends up being the picture that shows up on Facebook when I post this to Facebook and since I want to show a couple of other pictures later on in this post that I do not think make very nice pictures for the lead picture, I just had to pick a pretty one to start with.

I went to the doctor today and had another CT scan which showed that the cancer is progressing. There are two lesions on my liver that my doctor has been following. One of them has almost doubled in size and the cancer in my lungs is also progressing. I was taken off the clinical trial and ended up not receiving treatment today.

We have been waiting for results of a genetics test to see if another experimental treatment would work for me. Those results have come in and I am not a candidate for that treatment. There are really no good options left for me at this point. I could go back on the Folfoxiri treatment, the original chemotherapy I started on. It failed after I stopped taking one of the drugs, Oxaliplatin, and I had to stop that one because it causes neuropathy and it was getting bad enough that if we did not stop, the neuropathy would become permanent. So we could go back to that treatment, it would probably work for a little while but the neuropathy would be permanent and all of the other side effects of that very aggressive treatment would probably hit me much worse than it did before because my body is already worn down.

I am not really interested in that plan because while it might buy me more time, the quality of that time I do not think would be worth it. It isn't a plan that could ultimately cure the cancer, so it would really just delay things a short while, but the cost (physically, emotionally) would be high.

There is a new drug that has just hit the market. It is one that is suppose to be very similar to the 5 Fluorouracil that was also one of my original drugs, but it is suppose to be tolerated quite well. Given the aggressiveness of my cancer, my doctor does not think that it alone would be enough to reduce the cancer. It can be taken in conjunction with the other drugs I was on, but as I have mentioned, I am not really interested in going back on them. However, it might be enough to just keep the cancer from progressing for at least a little while. My doctor is hoping it could give me another 4-6 months. Since I really have nothing to lose, I am going to start taking that one as soon as possible, hopefully next Monday.

This drug has an interesting dosing schedule. It is a pill taken twice daily Monday through Friday for two weeks and then you are off it for two weeks. I'll let you know how it goes.

Sadly, now that I am no longer on the clinical trial, I will no longer be taking panitumumab which has the amazing side effect of giving me these lashes:

I don't think this picture quite does them justice. I currently have the thickest, longest, curliest lashes you ever saw! I tell you, women everywhere are envying me right now. When I first realized what I had going on here, I thought they were my new and improved lashes that were replacing the ones that had fallen out from chemo. People always say that when your hair grows back, you never know what you are going to get. People with straight hair can end up with curly hair, the color can change, etc. So when I saw these lashes I thought I just lucked out with my new replacement lashes! But then I went to the doctor and she noticed them right away and said, "You got your panitumumab lashes!" I was very disappointed to learn that this was a side effect and not a new permanent thing. And I really never expected that I would stop taking this drug so soon! I guess I will just have to enjoy them for as long as I can.

A while ago I happened to notice a bunch of my drugs sitting on our kitchen counter and was a bit amazed at the drug collection I have accumulated. I was beginning to feel as though I was single handedly keeping my pharmacy in business. So I rounded up all my prescriptions and took a picture. It is fairly impressive, especially for me given that I would have to be told to take a Tylenol if I had a headache since the thought of taking a drug never came to my mind on my own. And I can't tell you how many conversations I have had with my doctor that go something like this:

Me: My coughing is getting worse, (or fill in any symptom here, like I said, this is a regular conversation) it is really beginning to bother me.

Doctor: Have you been taking such and such medicine that I prescribed last time?

Me: Why no, I haven't even gotten that one filled. Is that the symptom that drug was suppose to fix?

Doctor: Yes it is, why don't you try taking it this time?

Yeah, I'm not so into taking medication. So I was pretty impressed with what I have accumulated. Here it is:

The good news is, since most of those are to combat the side effects of the chemo drugs, now that I won't be taking those chemo drugs, I won't have to take most of these, either!

Today my doctor asked me what was still on my bucket list. I must confess, I have been doing a pretty good job of checking those things off! So when I said I wasn't really sure (as far as within this country goes) she said she thinks I should have another dance party. (She was quite impressed with my birthday party this past year.) I told her I was already working on my next birthday party but then realized how ridiculous that sounds given that my birthday is still 4 months away, not so good when you may only have 4-6 months. She said I should plan 2 parties, one for the real birthday (and this next year will be a REAL birthday) and another in December, just to cover all bases. We got a good laugh about that one. Basically, my doctor ordered me to have two parties. So if anyone has any great party ideas, if I am going to follow doctors orders, I need to start planning a birthday party!

Well, I will let you know when I start taking my new drug and let you know how it is going.

One Year

It was one year ago today that I found myself in the emergency room being admitted to the hospital. I don't know why it is this anniversary that seems so significant to me, after all, I have a few of them. October 10 was the day I was diagnosed with cancer. August 4 was the first day I coughed, this cough being what finally landed me in the emergency room. September 2 is when I finally consented to go see a doctor about this silly cough that didn't want to go away. But it is September 29 that seems the most significant to me.

Maybe it is because it was the first time I had ever been sick enough to have to go to the emergency room. I went my entire life never having anything more than a common cold. (Okay, I admit it, I did get the chicken pox and I did have to have my tonsils removed, but I see those things more as rights of passage for a kid growing up in my generation than actual illnesses.) I felt absolutely ridiculous going to the emergency room. The one thing I was prepared to say in my defense when the emergency room staff proceeded to tell me I had no business being there (because that is what I was sure they were going to say), was that I didn't go on my own accord, my doctor told me I had to go. At least I could blame it all on her. I never imagined that I would find myself in the ICU for the next week or so.

I feel as though September 29 is when this whole crazy past year really got started. And it has been a crazy year because on one hand I received some of the worst news of my life. For the past year I have never felt confident planning more than a couple of months ahead because I didn't know if I would be around to fulfill those plans; but on the other hand, it has been one of the best years of my life. If I were to list out in two columns the good vs. the bad of the past year, the good column would be so much longer than the bad, there really is no comparison.

It wasn't always fun sitting in a chair receiving chemo for 4-5 hours. Sometimes it was really miserable. But for about 6 months I had an all day date with my husband once a week. We got to spend so much time together! And I loved how he always wanted to be there with me and took such good care of me. Once summer came he could no longer go with me on Thursdays so I had to rely on my friends to go with me, and they have! I have never gone by myself. For one whole year now I have been getting chemo treatments every two weeks and not once have I been by myself. This has been a year full of friends pouring out their love to me.

Not everyone is able to go to chemo treatments with me and fortunately, now that I am on a different treatment plan it doesn't last as long, either. But friends and family have shared their love in so many other ways. Visits to my house, thoughtful gifts, taking care of my children, homeschooling my children, cleaning my house, coming to my house at night and rubbing my feet so I could sleep when it was the only way I could get to sleep because of the coughing, holding fundraisers to help us with the medical bills, making donations...I feel as though I could go on forever and still not list every kind, wonderful thing people have done for us.

Then there is all the fun I have had over the past year. When you try to cram in everything you have been wanting to do, it keeps you really busy. And of course, most of those fun things wouldn't be as fun, or even possible, if there weren't friends or family there to enjoy it with you. We have been able to do so many fun things this past year. I have even added several "firsts", such as, riding in a helicopter, riding in a hot air balloon, going to Legoland, taking the kids on their first airplane trip, hiking the Narrows in Zion Canyon, going to places in NC that I hadn't been to before...again, it is almost hard to recall all of the adventures I have been able to experience over this past year.

Despite the overarching fact that I do have cancer, I have enjoyed wonderful health. The fact that I have been able to do all of the things I have this past year I consider a precious blessing. I am so grateful I have been able to spend the this year enjoying my friends and family and doing things that I love (most of which involve expending quite a bit of energy and being somewhere outdoors). I have spent the year being active and feeling wonderful rather than being sick and stuck at home in bed.

I am grateful for every day I have had and for every day I have to come. I don't know what the future holds for me, but then, none of us do. I was told that one year is the average time a person lives with my particular cancer carrying the BRAF mutation. (I am going to assume that is one year from diagnosis. I really have no idea how long I have actually had the cancer!) So I have at least made it to average. Of course, doing things "average" has never really been my style so I am not planning on this life adventure ending any time soon.

I guess I just wanted to mark this little one year anniversary by saying thank you, thank you for making this past year so wonderful, exciting and filled with so much love.

I think I can, I think I can, I think I can...

I feel a little bit like the Little Engine. I just keep chugging along, not stopping, not going anywhere too quickly, a slow steady movement onward. I had another CT scan this past week and visited with my doctor. She is very encouraged. The scan showed no changes with my lungs. There are two main areas on my liver that they are watching. One of them seems to have gotten ever so slightly bigger but the other one seems to have gotten ever so slightly smaller so they are considering it stable and I get to continue with the study. The good news really comes from my tumor marker numbers. My CEA after my last scan when I almost didn't get to continue with the study was 14.2. Last Thursday it was 10. There is another tumor marker called CA19-9. My doctor was following that one until I got on this study and since the study doesn't call for that number my doctor stopped requesting it. After my CEA number saved me from getting removed from the study, she decided she wanted to continue following this second marker. Before I started on my current treatment, this number was 5520. Now, after three months of treatment it was down to 2810. My doctor feels confident that the treatment is providing me some benefit.

I have still been trying to live life to the fullest and do all I can to enjoy it. Over Labor Day weekend I went with friends on a camping trip to Stone Mountain and Pilot Mountain.

 Pilot Mountain

For those of you who may be fans of the Andy Griffith Show, Pilot Mountain is where they got the name Mount Pilot and it is located near the town of Mount Airy or "Mayberry." 

 Stone Mountain

Hiking around the state park of Stone Mountain you will find yourself at this position, where you can see the face of the giant stone feature, and also on top where you can look out all over the mountains of the area. It is really quite beautiful. The little pathway you see in the middle leading toward the rock is where you would go if you wanted to scale the face of the rock. We just took the nice little walk that takes you around back and up to the top. I believe there were actually people scaling the face when I took this picture but they are so small you can't see them.

A pretty little waterfall on the way to the big waterfall that I didn't think was as pretty and far too crowded with people.

This past weekend I took a little get away with some girl friends to the Biltmore Estate. This is the largest house in America, built in 1895 by George Vanderbilt in Asheville, NC.

 We toured the house and also the grounds which have impressive gardens. I was a bit enamored with the lily pads. There were such a variety of styles and colors!

Better News

I met with my doctor today and learned that not only does she have a different take on my scan from last week, but that she has also really been putting up the good fight for me.

She said that the new tumor they thought they saw in my liver she does not believe is new but just easier to see because of the fact that the inside of it is dead. I don't know anything about reading CT scans, but I do like the sound of my tumor dying.

She also says that I am having an inflammatory reaction to the medications I am taking right now. This is what she thinks is causing my increased coughing and all of the polka dots all over my arms and legs and she thinks it is also affecting my scan. I can't explain that one to you at all, I really don't understand, but what she said sounded good and she was able to convince the people in charge of the study of her theories so they are going to let me stay on the study for now.

According to the way the trial is written, if you have any progression with your cancer in the first 6 weeks, then you are automatically out of the study. They said what they saw with my scan was progression and therefore I am done. But she convinced them that what they were seeing in the scan is not progression and she backed it up with my CEA (tumor marker) numbers and the fact that they have always indicated progression with my cancer. (Just a refresher, that number was still down the last time I went in and that is what convinced the other doctor to go ahead and let me get treatment last time.)

I will get another CT scan in 6 weeks. I really hope that one proves her right, otherwise I probably will be out of the study. The study requires that my CEA number be followed so that is the only tumor marker they have been tracking since I started the study; but today my doctor requested the lab to start tracking another one, CA 19-9, as well. With two tumor markers being tracked, she is hoping to have more information to tell if my cancer is progressing besides just the scans.

She also told us about another study. I don't know the details of it. She didn't go into a whole lot of depth and I didn't ask questions since I didn't want to waste her time on something I don't need to worry about right now but it is for a drug that has virtually no side affects but you have to have the right genetic qualifications for the drug to even work for you. She has already sent a sample of my tumor to be tested to see if I am a candidate for that study if/when this treatment fails.

Now that is one thing that was interesting she said today. She actually said, "...when this treatment fails, it will eventually..." I didn't really understand that since while this treatment does fail for some, others have been doing quite well on it and a couple of people have gone into complete remission. So I am not sure why she is suddenly thinking this treatment will definitely fail. I didn't ask her about that. I know I should have.

The news she gave me I didn't enjoy hearing was that since the tingling in my fingers and feet (from the oxaliplatin in my last treatment) is going away, that means I can eventually go back on the traditional chemotherapy treatment I was on, folfoxiri. I thought I was done with that. She said that treatment failed after they took me off of the oxaliplatin which was one part of the treatment, but that if we add that back in, it might continue to work with all of the drugs in combination again. I know I should be happy that I have another treatment option and it is one that worked for me for quite some time, but I am just not excited about doing that one again.

The other great news we got this week is that the Charity Care we had applied for through the hospital was granted to us. Now, much of the financial stress this has been putting us under will be relieved.

We have truly been blessed! Thank you for all of your continued prayers and support. It is clearly getting us through all of this quite well!

The latest news with Clinical Trial Treatment #4

Today was my 4th treatment on the clinical trial and my first CT scan since starting the trial. My results were not definitively bad or good. My scan showed that the tumor in my liver has grown. That is considered "progression" of my cancer and is reason to stop the trial since this treatment does not appear to be stopping the progression of the cancer. My doctor is currently out of town so the other doctor who is running this trial came to talk with me. Her first inclination was to not have me go through with treatment today. But then she saw that I look really good, I am still very active, I feel good, my weight is stable and other than the fact that I believe my cough is increasing, I have nothing to complain about. She understands that you can't make all decisions based on scans and numbers, but also based on how the patient is doing and feeling.

If this treatment is not working for me, then there would be an advantage to not getting treatment today because they like there to be a four week window between new treatments to give the old drugs time to get out of your system before starting a new drug regimen. But, what if this treatment, while not stopping the progression, is at least slowing it down? The doctor I spoke with was struggling to decide what to do and didn't want to make that decision for my doctor. Then she decided to check my CEA number which is a tumor marker and gives an indication as to how much the cancer is progressing. When the previous chemotherapy stopped working my CEA number got up to 25. After one treatment on this new clinical trial that number went down to 15, indicating that it was helping. Today my number was 14. When she saw that she decided to go ahead and have me get my treatment today.

I will continue to take the pills every day until my next appt. which is on Aug. 20. At that time I will be able to meet with my doctor and discuss my options. While it was known from the beginning what my plan B would be when plan A failed, it is not known at this time what plan C will be. The fact is, they don't know of any other obvious, good options for me right now. They will do some research and see what other trials are out there. It might mean going to a different hospital and starting over with a different oncology team. We just don't know.

There is the question, why are all of these decisions based on a tumor in my liver? What about my lungs? How are they doing? My liver contains an actual tumor. That can be measured very precisely and we can know how much it has grown or shrunk based on measuring its diameter. My lungs, however, do not have a tumor. The cancer is diffused throughout the lungs and it is very hard to quantify any increase or decrease accurately. Any change that has taken place has been minimal enough that it isn't very obvious how much change has taken place. Of course I can tell a huge difference between now and back in October, but as far as measuring cancer growth, my lungs are not a very good source of information.

New Treatment

Today was my first treatment on the clinical trial. For the past two weeks I have had numerous tests. They wanted to get baseline data on just about every aspect of my health but now that is over. Actually, I will repeat most of those tests/Dr. visits in about a month but then after that it will pretty much just be going in for the chemo every two weeks.

I got more good news. They opened up a new phase of the trial using the three drugs so they allowed me to go straight to the three drug trial rather than starting on the two drugs and waiting until my cancer progresses to get on the three drug trial. Not only does the three drug regimen have better results but for some reason patients seem to tolerate it better, the side affects appear to not be quite as bad. The third drug that has been added is Dabrafenib.

We started today at 8:30, did some blood tests, met with the doctor and then headed to infusion. I took the Dabrafenib and Trametinib orally and then had a one hour infusion of the third drug. That would normally have been the end of the day but because this was the first time taking the drugs they wanted to get blood samples at 1 hour, 2 hours, 4 hours, 6 hours and 8 hours after the infusion. This will tell how long it takes the drugs to get into my system and how long for them to leave.

I was very happy to be able to start treatment again. My cough has been coming back and it has been a bit disconcerting seeing how quickly the cancer has grown since the traditional chemo stopped working. I am hopeful that this new treatment will work as quickly to get the cancer back under control as the original chemo did to begin with.

I tolerated the drugs this first time quite well. Brynn was very happy and surprised to see when I got home that I wasn't sick. I, too, was very relieved. Like the traditional chemo, the cumulative effect of the drugs could cause me to tolerate it less well as time goes on. I hope that is not the case but for now at least, all is well.

Big Changes

It was a big day today at the hospital. I arrived shortly after 7:00 am expecting to be out of there by sometime around 10:30 am and ended up not getting to leave until about 2:00 pm. Since I had to go in fasting for my CT scan, I was really ready to get out of there! A big thanks to my friend Nicole who probably didn't know what she was in for when she agreed to go with me today.

But all of this also means there is a lot of news so settle in and get comfortable if you want to continue reading the rest of this. I had my CT scan and it showed that the cancer is progressing in my liver. There was one pretty large mass and several small spots scattered throughout my liver. This means that the chemotherapy is no longer effective and I will be discontinuing that treatment. My doctor said I lasted on it much longer than she expected or what is normal for a cancer patient with the BRAF mutation.

So, as was planned for when the chemo began to fail, I will now move on to the clinical trials that my doctor told me about at the beginning of my treatment. This is where my most recent miracle comes in because a spot just opened up! Spots don't just come along every day and the fact that one was available right when I needed it is truly a blessing. Sadly, this spot was actually slated for someone else but given my overall health and activity level along with my youthful age, the doctors felt I was a better candidate for the treatment than the other patient. For this I feel very bad. I do not like that my getting this treatment means someone else won't. I wish everyone who wanted it could have it.

I was accepted into the trial, went over all of the paperwork and signed up today. This is why it was such a long day. By law they have to tell you everything about everything which meant they had to go over 32 pages worth of information. I really wanted to just say, "I'm not paying any attention to you because I am thinking about how much I want BREAKFAST right now and I just want to head over to Elmo's as we had planned to get the orange blueberry french toast and an omelette." But I didn't say that, I sat very patiently and tried very hard to hear and understand every word they said. So, here is what I can tell you about the new plan. (And by the way, Nicole and I were sharing that omelette and french toast, I didn't actually eat two meals all by myself. Not that I couldn't have.)

I will start by taking two new drugs, trametinib and panitumumab. (I know this means nothing to most of you but since I do have a few doctor friends out there and people who know about cancer treatments and such I will just give all the details so they can savor my every word.) These drugs have been approved by the FDA for use with skin cancer. The clinical trials are to determine the effectiveness on other cancers that contain the BRAF mutation, including colon cancer. They say that about 250 people in 6-8 different countries will be participating in this study. Trametinib is a pill that I will take orally every day. Panitumamab is given intravenously every two weeks. Since this is for research purposes they will be giving me a lot more tests and monitoring my overall health very carefully to see how the drugs affect me so I will be getting CT scans more often as well as under go many other tests. If, after six months, my cancer continues to progress, then I can go into a study of a three drug combination, the two I have already listed and adding dabrafenib. My participation in the study is expected to be about 6-8 mo. but I can continue for as long as the drugs are effective and I am benefitting from them.

All of my expenses will be covered, the medicine, the testing, I will even be reimbursed for the gas mileage to go to my appointments, parking while at the hospital and even food for days that I have to be there for several hours. Ironically, they just had open enrollment for health insurance at Kevin's work and he added me back onto his insurance (for an exorbitant cost) which will kick in next month. So now that all of my treatment will be free, I will have insurance to pay for it!!

One of the major side effects of this drug regimen is a rash which tends to look like acne. So, if you happen to see me, no, I did not get in a time machine and go back to the teenage years, and if you find a lack of pictures of me on Facebook, you'll know why. But as my doctor pointed out, I didn't lose all of my hair so maybe I won't get the rash! With me, you just never know.

But, the good news, possibly the best news I have had since all of this began, is that currently about 30% of the people who have participated in this trial have experienced a complete remission of their cancer. To be honest, I am not sure if that is patients on the two drug plan or three drug plan, I suspect it is with the three drugs, but if the two drug treatment plan doesn't work for me I will get on the three drug plan so either way it is good news.

I will begin the clinical trials within the next two weeks and when I do, I will let you know how it goes! Here's to a whole new beginning.