William started walking at 10.5 months. I remember thinking that was 6 weeks earlier than Owen had started. Owen started walked the week he turned one - it only took him days to go from one or two steps to 9 or 10. William, on the other hand, took his one or two steps at 10.5 months, then the next week added a step, then a few weeks later did five or six, then back to four, and by his first birthday was walking those same 9 or 10 steps Owen had been by his birthday. Interesting how they both arrived at the same "spot" in such different ways.
I was reading early this morning - Jon had an early shift today. He wakes up at 5:15 and is out of the house by 5:40. Normally I have no trouble falling back to sleep, but today I ended up reading instead of snoozing for that peaceful hour before the children wake up. I looked at my bedside table and had to make the decision between my current novel ("The Wednesday Letters") and a small devotional book called "His Promises". I picked the devotional, and flipped open to a page. (I like to do that - randomly pick a page. That way, if it's something that perfectly suits me for that moment, I feel like God directed me there.)
Anyway, I turned to a paged titled, "He Goes Ahead of Us", which focuses on John 10:4. "When he has brought out all his own, he goes ahead of them, and the sheep follow him because they know his voice."
I immediately pictured my two little boys learning how to walk. Any toddler, of course. When we teach them this fundamental skill, we do not stand behind them, and cheer them on from behind. We do not give them a gentle nudge, wish them the best, and turn back towards our cup of coffee. You know how it goes; at least one adult stands or kneels just far enough away as to entice the toddler to strive to reach. Too close would be too easy; too far is unrealistic and setting the toddler up for failure. We make the call - how far can they go today? "I'll move this far away, and with praise, encouragement, guidance, and maybe even a little help, he can make it this far. I know he can!" Then, once that goal has been reached and there has been a little celebration, we take it a step further back and try again, knowing that life's requirements dictate he will need to be able to make more than three or four steps in a row to succeed.
How our Heavenly Father is the same! It always comforts me to imagine God in this way, and it's become so much clearer to me since I've become a mother. But as I start a journey into a daunting and admittedly scary place, I know that God is guiding me along, challenging me to take each step because He knows I am able. He goes before me - each step I take, He has taken before. What a comfort. I hope it comforts you too. I am well aware that in my circle of friends, I am NOT the only person who has, is, or will wander into unknown territory; who is in the throws of making decisions; who faces something fearful. Often the saying goes, "God is with us." In cases like mine, and maybe yours, perhaps, "God goes before us" is even MORE reassuring.
Just a thought.
If you were wondering, I am still awaiting a phone call from the Cross with information regarding my CT scan. I am expecting to hear soon - the clinical trial nurse (Leslie) wanted me to be done my antibiotics from Christmas (two more days) before I start treatment. I hope the CT scan will be beginning of next week so we can start treatment immediately afterward. Would like to get this ball rolling. Thank you for your prayers. We are feeling very "at peace" with our decision. My philosophy regarding the 50/50 chance of getting ipilimumab vs. placebo: We will pray that I will get the drug. And if I don't get the drug, we will pray that it is (a) because I don't need it, and (b) someone else who needs it gets my share.
Wednesday, January 19, 2011
Monday, January 10, 2011
Ipilimumab, here we come.
Probably not much of a surprise to anyone who has been following up on our story, but we had to make our decision this morning and we chose the Ipi trial. It wasn't an easy decision, especially after seeing the woman in the waiting room this morning who had just finished her one-month intense infusion of Interferon and looked really good. But after talking with our oncologist and the clinical nurse, we really feel like we've made the best choice. We heard some more information this morning that backs our belief that this trial is the right thing for us at this juncture. It's also a comfort to know that if the melanoma returns at any point in this trial, I will be removed from the trial but still have VIP care from my new friends at the Cross, and that likely by then the FDA-approved version (smaller dose) of Ipilimumab will be available for me since I would be at stage 4.
I had lots of bloodwork done today and my first ECG (which was remarkably fast and easy), and we have a CT scan to book as soon as I am done my antibiotics from the infection in my drain site that developed over Christmas. Once the scan is done, I will be able to start the next day. Scan will probably be done mid-late next week, so I guess that in two weeks we'll be starting the trial. Pray that I will recieve the drug and not be in the placebo arm, and if I am in the placebo arm, pray that it's because I won't NEED the drug. We obviously want NO RECURRENCE.
I appreciate having all of your support! Our team is so big, and it is so calming to hear "We support you in whatever option you choose." I can't imagine dealing with justifying our decision to people who love us but disagree with our choices. So, thank you!
I just want to say that at this point, I'm almost excited to start building a relationship with the people who work at CCI. Today they made a great impression with their personability and helpfulness. This doesn't surprise me as I have only ever heard great things about this institute.
Jon and I treated ourselves on the way home today. We were just going to get a coffee but when we drove past Montana's, Jon remembered that it's 1/2 off Wings Monday, so we stopped in and enjoyed one of our favourite "cheats". We are starting a calorie restriction "diet" tomorrow - simply making sure that we really restrict our calories and get in lots of healthy, natural foods. I am looking to eat 800-1200 calories per day, with two cheat meals per week if I want. It's what I was doing this summer/fall when I lost 28 pounds before my first surgery, but I've gained some of that back, so it's time to start again. Mom is game to join us so we'll see 1) how much weight our household can shed, and 2) if restricting calories can help boost my immune system to fight cancer even if I am stuck with the placebo.
That's all for now. Tomorrow morning I am back to the hospital for another dressing change, then Mom and I need to go shopping for a new microwave. Ours *ahem* broke this morning. Time to go get those boys.
Oh... funny moment yesterday. Owen wanted me to come play in his room. I was to lie on his bed with the lights out. He went out and shut the door, then popped his head back in and said the following:
"Good night, Mommy. I love you. You stay in bed or Owen will spank."
Nice.
I had lots of bloodwork done today and my first ECG (which was remarkably fast and easy), and we have a CT scan to book as soon as I am done my antibiotics from the infection in my drain site that developed over Christmas. Once the scan is done, I will be able to start the next day. Scan will probably be done mid-late next week, so I guess that in two weeks we'll be starting the trial. Pray that I will recieve the drug and not be in the placebo arm, and if I am in the placebo arm, pray that it's because I won't NEED the drug. We obviously want NO RECURRENCE.
I appreciate having all of your support! Our team is so big, and it is so calming to hear "We support you in whatever option you choose." I can't imagine dealing with justifying our decision to people who love us but disagree with our choices. So, thank you!
I just want to say that at this point, I'm almost excited to start building a relationship with the people who work at CCI. Today they made a great impression with their personability and helpfulness. This doesn't surprise me as I have only ever heard great things about this institute.
Jon and I treated ourselves on the way home today. We were just going to get a coffee but when we drove past Montana's, Jon remembered that it's 1/2 off Wings Monday, so we stopped in and enjoyed one of our favourite "cheats". We are starting a calorie restriction "diet" tomorrow - simply making sure that we really restrict our calories and get in lots of healthy, natural foods. I am looking to eat 800-1200 calories per day, with two cheat meals per week if I want. It's what I was doing this summer/fall when I lost 28 pounds before my first surgery, but I've gained some of that back, so it's time to start again. Mom is game to join us so we'll see 1) how much weight our household can shed, and 2) if restricting calories can help boost my immune system to fight cancer even if I am stuck with the placebo.
That's all for now. Tomorrow morning I am back to the hospital for another dressing change, then Mom and I need to go shopping for a new microwave. Ours *ahem* broke this morning. Time to go get those boys.
Oh... funny moment yesterday. Owen wanted me to come play in his room. I was to lie on his bed with the lights out. He went out and shut the door, then popped his head back in and said the following:
"Good night, Mommy. I love you. You stay in bed or Owen will spank."
Nice.
Wednesday, January 5, 2011
Jewelry
Can I call it a perk? Maybe not, seeing as I buy jewelry regardless. Anyhow, shopping is something I enjoy - let's just be honest. And cancer doesn't change that, so I jumped at the opportunity to shop for a medic alert bracelet. Why do I need one of those? Well, once you've had a lymphadenectomy, there are some rules regarding the treatment of that arm for the rest of your life. Since I had lymph nodes removed from my left arm, I am not supposed to have blood taken or given, IV treatment done, or blood pressure taken from that arm again. The large scar on my forearm will remind me to say something when the nurses reach for that arm, but what happens if I'm by myself and unable to say anything?
So, I will have a bracelet that will announce to a health care worker to "Protect the Arm". And it will be girly and pretty because I want it that way. I figure it's for a good cause.
Jon and I bought a little wooden toboggan for the boys for Christmas. Yesterday, as we were getting the boys ready to go to Bev's for the day, Mom had the idea of putting them on the toboggan. Well, you should have seen their eyes light up. Mom says they had a ball... until they tipped and Owen got snow on his pants. Apparently this is a big deal to him. When I asked him last night if he wanted to take the sled over to Bev's again in the morning, he said, "No." We found a solution. Last year I had purchased a little raised toboggan (not for sledding down hill) to put William's infant seat in. I had to check to make sure it was long enough for two little bums. It was, so I asked Owen again. He still said, "No. Snow on my pants." I suggested that I had a way to "make it better" - as he would say. I didn't think that by simply showing him the sled he would understand why this one was better (because it's raised off the ground and has a railing). I tried to explain before I showed it to him. He wasn't buying it. He complained and said, "No thank you," over and over until I brought the sled out. Immediately he understood and was very excited to try it out this morning. They both climbed in with no tears as they left home, and Mom says they BEAMED the entire way. Making my kids happy makes my heart smile. I know making them happy isn't supposed to be our primary goal, but when it happens it's great.
My darling mother and I spent many hours in the past few days organizing our boy clothes. It was a big job, and it required 20 clear rubbermaid bins, but we are just about done. That task has been looming around for a very long time and I'm so relieved that the pile of boxes and garbage bags full of clothes from the basement storage room are now clearly labeled and organized and stacked on the side of the room. Whew!
I saw my surgeon again on Monday, and she seems to think things are healing nicely. She did acknowledge what the doctors had been saying here - the area around the incision was a little red, warm, and hard (although redness and warmness has decreased to almost nothing), so she took a sample of whatever was in there and sent it away for tests. (I don't think she's testing for cancer again, by the way. She wants to know if there is infection in there, and if there is, she will modify the antibiotic prescription I am currently on to better suit what's happening.)
So that's about it. I have been having some ups and downs these past few days - not really downs, even. Just little "hits" of reality, or rather, what reality COULD be. I think it's due to the fact that we are so focused on numbers and percentages and side effects as we choose our treatment plan. Once we make the decision, we can put those aside and just LIVE. God is continuing to show Himself to us as we struggle through - Jon and I have been watching Max Lucado's sermons that he has available on his website. Some of them pertain so closely to what we are experiencing that it's almost scary. I think we'll watch those videos over and over when we are feeling a little anxious or worried. Once I watch them another time or two, I'll feel comfortable and confident enough to relay what sticks in my brain.
The weather is beautiful this week - right around zero and no wind, just big, fluffy snowflakes. Maybe we'll go out for a walk this afternoon.
Oh... and we are praying today and tomorrow for old friends of my family. The father will finally be having brain surgery tomorrow morning. This in itself is an answer to prayer, but of course, we want to be praying for the best possible outcome and for the family as they travel to be together.
So, I will have a bracelet that will announce to a health care worker to "Protect the Arm". And it will be girly and pretty because I want it that way. I figure it's for a good cause.
Jon and I bought a little wooden toboggan for the boys for Christmas. Yesterday, as we were getting the boys ready to go to Bev's for the day, Mom had the idea of putting them on the toboggan. Well, you should have seen their eyes light up. Mom says they had a ball... until they tipped and Owen got snow on his pants. Apparently this is a big deal to him. When I asked him last night if he wanted to take the sled over to Bev's again in the morning, he said, "No." We found a solution. Last year I had purchased a little raised toboggan (not for sledding down hill) to put William's infant seat in. I had to check to make sure it was long enough for two little bums. It was, so I asked Owen again. He still said, "No. Snow on my pants." I suggested that I had a way to "make it better" - as he would say. I didn't think that by simply showing him the sled he would understand why this one was better (because it's raised off the ground and has a railing). I tried to explain before I showed it to him. He wasn't buying it. He complained and said, "No thank you," over and over until I brought the sled out. Immediately he understood and was very excited to try it out this morning. They both climbed in with no tears as they left home, and Mom says they BEAMED the entire way. Making my kids happy makes my heart smile. I know making them happy isn't supposed to be our primary goal, but when it happens it's great.
My darling mother and I spent many hours in the past few days organizing our boy clothes. It was a big job, and it required 20 clear rubbermaid bins, but we are just about done. That task has been looming around for a very long time and I'm so relieved that the pile of boxes and garbage bags full of clothes from the basement storage room are now clearly labeled and organized and stacked on the side of the room. Whew!
I saw my surgeon again on Monday, and she seems to think things are healing nicely. She did acknowledge what the doctors had been saying here - the area around the incision was a little red, warm, and hard (although redness and warmness has decreased to almost nothing), so she took a sample of whatever was in there and sent it away for tests. (I don't think she's testing for cancer again, by the way. She wants to know if there is infection in there, and if there is, she will modify the antibiotic prescription I am currently on to better suit what's happening.)
So that's about it. I have been having some ups and downs these past few days - not really downs, even. Just little "hits" of reality, or rather, what reality COULD be. I think it's due to the fact that we are so focused on numbers and percentages and side effects as we choose our treatment plan. Once we make the decision, we can put those aside and just LIVE. God is continuing to show Himself to us as we struggle through - Jon and I have been watching Max Lucado's sermons that he has available on his website. Some of them pertain so closely to what we are experiencing that it's almost scary. I think we'll watch those videos over and over when we are feeling a little anxious or worried. Once I watch them another time or two, I'll feel comfortable and confident enough to relay what sticks in my brain.
The weather is beautiful this week - right around zero and no wind, just big, fluffy snowflakes. Maybe we'll go out for a walk this afternoon.
Oh... and we are praying today and tomorrow for old friends of my family. The father will finally be having brain surgery tomorrow morning. This in itself is an answer to prayer, but of course, we want to be praying for the best possible outcome and for the family as they travel to be together.
Saturday, January 1, 2011
New Year, New Challenges, New Adventures, Same Solid Rock
I can't believe it's been nearly a 4 weeks since I last updated. I apologize. It was just pretty crazy in my world with appointments, family visits, and Christmas prep. It has been a wonderful month, but busy, nonetheless. I appreciate you holding out for another update. Your patience was not in vain!
So, I'm fairly certain I haven't posted since we recieved our good news a few weeks ago. I have felt the need to explain our good news as I fear many people have been deceived as they don't know the full story. Not to take away from good news - we certainly had cause to celebrate. Let me explain:
When I had surgery in November, they did two procedures at once - the wide local excision of the mole site (leaving a 6-inch scar and indent in my left forearm), and then a Sentinel Lymph Node Dissection. This is done to see if cancer has travelled from the original site to the lymph nodes under my arm. They inject dye into the melanoma site and using xray, trace where the dye travels to first. The first lymph nodes to receive the dye are called the sentinel nodes. They would have also received cancer cells first. In that first surgery, two sentinel nodes were removed. One week later, we were told that they had tested positive for cancer. Having cancer in your lymph nodes immediately moves you into stage III. At this time we also learned that my CT scan (which checks to see if cancer has spread and metastasized internall) came back clear, with just a few little dots here and there (which is very common for anyone).
Move ahead a few weeks - as soon as we got our yucky results at the end of November from the first surgery, they scheduled the Radical Axillary Lymph Node Dissection (could be called a lymphadenectomy or something like that) to remove and test the rest of the nodes under my left arm. (You have anywhere from 25-40 nodes there.) I don't know how many nodes they removed in total, but the news we got two weeks ago was that none of the REST of the lymph nodes have cancer in them. It would appear that for the time being, I have no cancer in my body. That is why we celebrated! At that appointment, we were more nervous than we had been the first time we were getting pathology reports. She walked in and immediately said (with a smile and a faint tear) "Good news!" I kind of played the disbelief card for a moment... like I had heard her wrong and she meant, "Good news - your appointment with the doctor has been moved up to...." or something like that. But now, after asking her to clarify, she confirmed that she meant that no more lymph nodes had cancer in them. I was thrilled, Jon looked like he wanted to kneel and thank God right then and there. I'm sure he did (as I did) the whole time we walked out of the building, and it's the first thing we did as a couple when we got to the car. We kind of have this arrangement after results - talk to God right after, either asking for direction and hope or expressing gratitude for good news. Then we went to Red Lobster (one of our silly little indulgences), and celebrated with a bottle of cab-merlot, lobster-artichoke dip, and crab-stuffed mushrooms. It was A LOT of fun to share good news for the first time in a while. And the way everyone responded with praise to God was a blessing to our whole house. Mom, Jon, and I loved to read your inspiring and encouraging words as they came streaming in.
Now for reality, just because I want you to know what we know. These latest results do nothing to improve my "chances" so to speak. My numbers do not change. I'm sure it's still good news (made evident by the doctor's smiles and tears) but on paper they don't change much. Here's what my numbers are for those of you who want to know what I mean when I bring it up:
Stage III Melanoma patients with 3.8mm Clark's level IV ulcerated melanoma (which is what mine was) have a 50-55% chance of survival over 5 years. Melanoma is an agressive cancer and is quite likely to recur. When it does recur, it is more likely to develop internally on an organ, like the liver or lungs than on the skin like it did originally. So, without doing any form of treatment, I have 50-55% chance of survival through 2015. Those numbers don't thrill us, obviously, but God doesn't work on numbers determined by the medical community. By the way, one thing to remember is this - if melanoma is going to recur, it is most likely to recur within 5 years (even 2-3 years), hence the 5-year survival rate. It COULD recur within 10 years, but after 10 years, if it hasn't returned, it most likely won't.
Treatment - we are in the process of deciding between two (or three) treatment options, based on these numbers. Here's what we're looking at:
Option 1: No treatment. Obviously, this means we are relying completly on faith, and perhaps dietary/fitness changes Jon and I are planning to initiate when all the Christmas goodies are gone. This keeps us at 50-55% survival over 5 years.
Option 2: Interferon Alpha-2B. Some facts about this treatment:
a) One year program - 5x per week intensive iv infusion for first month, and 3x per week self-injected dose for 11 months
b) Highly toxic - Interferon kicks your butt. It's a harsh treatment, and about 25% of patients do not finish the entire program due to blood or liver issues. Expected side-effects are moderate-extreme fatigue, nausea, depression, and anxiety. Yay. Sign me up.
c) We discovered that we WOULD be able to set up the iv infusion therapy in Camrose, so I could avoid needing someone to drive us into the University area in Edmonton (congested traffic) in our huge vehicle in the middle of January. This is MUCH more convenient.
d) Interferon apparently increases my survival rate by 6-10%. Not a lot. And apparently, it does NOT improve my survival rate after 5 years. The 10 year survival rate is not affected, suggesting that interferon treatment might only postpone problems. One document I have states that, "Interferon Alpha has been approved because it was demonstrated that it took longer for the disease to come back (for patients receiving this drug), not because it is able to increase the survival of patients treated with interferon."
e) My melanoma specialist, Dr. Tom Salopek, brought this treatment to my attention at our very first meeting.
Option 3: Clinical Trial - Ipilimumab. Some facts about this treatment:
a) My oncologist, Dr. Mike Smylie, is heading this study up. It was brought to my attention when we met just a week or two ago. It is a study being conducted by the EORTC and will take place in many countries throughout the world. It is sponsored by Bristol-Myers Squibb.
b) This drug has been studied in Europe on Stage IV cancer and is seeing quite exciting results. I don't know numbers for sure, but from my online research, I have seen numbers from 25-45% increase in survival rate. One would hope that results like that for stage iv would be mirrored in stage iii.
c) Three-year program - infusions every three weeks for three months, and then every three months for three years.
d) Side effects are much more tolerable. Many have no or very tolerable side effects, some have skin rash, fatigue, and diarrhea, and only a few experince headache, abdominal/colon issues, or headache.
e) Here's the clincher - this is a double-blind trial. That means, ladies and gents, that out of the 950 patients in the trial, 475 of us will have a placebo. Nada. No drug. That's the hard part. The reason for this is that this drug is not yet FDA-approved for stage iii, and Dr. Smylie (et al) would love to get it approved. The government needs successful numbers before it will approve a drug, and trials are how that's done. Yes, it feels a little like they are gambling with my life. However, I do have faith in God, and I ultimately believe that it is He who will determine whether or not I am healed, not a drug. I want to take advantage of the medical resources that are made available, but in this situation, I feel I can not spend too much time worrying about the whole placebo thing. Worst case scenario - I get a placebo and I'm still at 50-55%. (Which is only 6-10% less than if I suffered on interferon for a year, and that's only for the first five years.)
So, with all this information in front of us, Jon and I are on the same page. We are leaning toward the clinical trial, heading into it with prayers and hope that God would see fit to provide me with the actual drug, and if not, that He would open up another door for us down the road. We haven't made up our minds for certain, though. We have until January 12th. Your prayers are greatly coveted!!! We need a decision, and we need peace of mind.
p.s. We also need the melanoma to NOT come back as there is a high chance of recurrence. NO MORE MELANOMA. Repeat after me.... no more melanoma.... no more melanoma....
Okay - just a bit more. If you've made it this far you are a true champion. Just to keep you up to date - I had a JP drain put in after my surgery on December 7th. It was still draining lots at my appointment with the surgeon (Dr. Dabbs) two weeks post-surgery, so she left it in, thinking she would remove it at my appointment with her on January 3rd. On the 23rd it because very painful - like little razorblades cutting into the area when I moved. Erica and Brent arrived that night, and I headed into the hospital to get checked out. I had an infection, and was treated with iv therapy. I went in once a day for iv treatment over Christmas (hence two tubes in my body - one drain and one iv in the elbow of my right arm), and on Sunday morning, as we were getting ready for church, I realized I had no more pain! Yay - the infection must be going away. I was getting ready for my shower - I stood up and my drain slid right out. We went to the hospital instead. :) They dressed it up and sent me home, telling me to come back at least once a day as it was still draining lots. I spent several days with a drenched side feeling quite uncomfy, trying to do nighttime dressing changes at home, and unable to bend my right arm due to the iv, but eventually, the draining started letting up and the iv came out. I'm feeling pretty good these past few days. No tubes, no drainage, and no home-dressing changes. I am still going in every morning to be assessed as the area is red and warm and there is hard tissue under my arm that they are trying to keep an eye on, but I feel great otherwise.
Mom, Jon, and I were fortunate enough to have Erica and Brent and kids here for a week for Christmas. Lots of fun but Erica - we forgot about the train cake!!!!! We had a few dinner dates with wonderful friends this week to help ring in the New Year, and Mom and I de-Christmassed the house yesterday. I have to admit - the tree made my living room look better. Tree is better than no tree...
There.... wow. We've had company (twice) and lunch since I started writing this. Kudos if you made it through. God bless you all. You continue to be instrumental in my positive outlook. And we continue to strive to know God better - to study and pray and grow closer together as we grow closer to Him. Thank you for your prayers! We love you.
So, I'm fairly certain I haven't posted since we recieved our good news a few weeks ago. I have felt the need to explain our good news as I fear many people have been deceived as they don't know the full story. Not to take away from good news - we certainly had cause to celebrate. Let me explain:
When I had surgery in November, they did two procedures at once - the wide local excision of the mole site (leaving a 6-inch scar and indent in my left forearm), and then a Sentinel Lymph Node Dissection. This is done to see if cancer has travelled from the original site to the lymph nodes under my arm. They inject dye into the melanoma site and using xray, trace where the dye travels to first. The first lymph nodes to receive the dye are called the sentinel nodes. They would have also received cancer cells first. In that first surgery, two sentinel nodes were removed. One week later, we were told that they had tested positive for cancer. Having cancer in your lymph nodes immediately moves you into stage III. At this time we also learned that my CT scan (which checks to see if cancer has spread and metastasized internall) came back clear, with just a few little dots here and there (which is very common for anyone).
Move ahead a few weeks - as soon as we got our yucky results at the end of November from the first surgery, they scheduled the Radical Axillary Lymph Node Dissection (could be called a lymphadenectomy or something like that) to remove and test the rest of the nodes under my left arm. (You have anywhere from 25-40 nodes there.) I don't know how many nodes they removed in total, but the news we got two weeks ago was that none of the REST of the lymph nodes have cancer in them. It would appear that for the time being, I have no cancer in my body. That is why we celebrated! At that appointment, we were more nervous than we had been the first time we were getting pathology reports. She walked in and immediately said (with a smile and a faint tear) "Good news!" I kind of played the disbelief card for a moment... like I had heard her wrong and she meant, "Good news - your appointment with the doctor has been moved up to...." or something like that. But now, after asking her to clarify, she confirmed that she meant that no more lymph nodes had cancer in them. I was thrilled, Jon looked like he wanted to kneel and thank God right then and there. I'm sure he did (as I did) the whole time we walked out of the building, and it's the first thing we did as a couple when we got to the car. We kind of have this arrangement after results - talk to God right after, either asking for direction and hope or expressing gratitude for good news. Then we went to Red Lobster (one of our silly little indulgences), and celebrated with a bottle of cab-merlot, lobster-artichoke dip, and crab-stuffed mushrooms. It was A LOT of fun to share good news for the first time in a while. And the way everyone responded with praise to God was a blessing to our whole house. Mom, Jon, and I loved to read your inspiring and encouraging words as they came streaming in.
Now for reality, just because I want you to know what we know. These latest results do nothing to improve my "chances" so to speak. My numbers do not change. I'm sure it's still good news (made evident by the doctor's smiles and tears) but on paper they don't change much. Here's what my numbers are for those of you who want to know what I mean when I bring it up:
Stage III Melanoma patients with 3.8mm Clark's level IV ulcerated melanoma (which is what mine was) have a 50-55% chance of survival over 5 years. Melanoma is an agressive cancer and is quite likely to recur. When it does recur, it is more likely to develop internally on an organ, like the liver or lungs than on the skin like it did originally. So, without doing any form of treatment, I have 50-55% chance of survival through 2015. Those numbers don't thrill us, obviously, but God doesn't work on numbers determined by the medical community. By the way, one thing to remember is this - if melanoma is going to recur, it is most likely to recur within 5 years (even 2-3 years), hence the 5-year survival rate. It COULD recur within 10 years, but after 10 years, if it hasn't returned, it most likely won't.
Treatment - we are in the process of deciding between two (or three) treatment options, based on these numbers. Here's what we're looking at:
Option 1: No treatment. Obviously, this means we are relying completly on faith, and perhaps dietary/fitness changes Jon and I are planning to initiate when all the Christmas goodies are gone. This keeps us at 50-55% survival over 5 years.
Option 2: Interferon Alpha-2B. Some facts about this treatment:
a) One year program - 5x per week intensive iv infusion for first month, and 3x per week self-injected dose for 11 months
b) Highly toxic - Interferon kicks your butt. It's a harsh treatment, and about 25% of patients do not finish the entire program due to blood or liver issues. Expected side-effects are moderate-extreme fatigue, nausea, depression, and anxiety. Yay. Sign me up.
c) We discovered that we WOULD be able to set up the iv infusion therapy in Camrose, so I could avoid needing someone to drive us into the University area in Edmonton (congested traffic) in our huge vehicle in the middle of January. This is MUCH more convenient.
d) Interferon apparently increases my survival rate by 6-10%. Not a lot. And apparently, it does NOT improve my survival rate after 5 years. The 10 year survival rate is not affected, suggesting that interferon treatment might only postpone problems. One document I have states that, "Interferon Alpha has been approved because it was demonstrated that it took longer for the disease to come back (for patients receiving this drug), not because it is able to increase the survival of patients treated with interferon."
e) My melanoma specialist, Dr. Tom Salopek, brought this treatment to my attention at our very first meeting.
Option 3: Clinical Trial - Ipilimumab. Some facts about this treatment:
a) My oncologist, Dr. Mike Smylie, is heading this study up. It was brought to my attention when we met just a week or two ago. It is a study being conducted by the EORTC and will take place in many countries throughout the world. It is sponsored by Bristol-Myers Squibb.
b) This drug has been studied in Europe on Stage IV cancer and is seeing quite exciting results. I don't know numbers for sure, but from my online research, I have seen numbers from 25-45% increase in survival rate. One would hope that results like that for stage iv would be mirrored in stage iii.
c) Three-year program - infusions every three weeks for three months, and then every three months for three years.
d) Side effects are much more tolerable. Many have no or very tolerable side effects, some have skin rash, fatigue, and diarrhea, and only a few experince headache, abdominal/colon issues, or headache.
e) Here's the clincher - this is a double-blind trial. That means, ladies and gents, that out of the 950 patients in the trial, 475 of us will have a placebo. Nada. No drug. That's the hard part. The reason for this is that this drug is not yet FDA-approved for stage iii, and Dr. Smylie (et al) would love to get it approved. The government needs successful numbers before it will approve a drug, and trials are how that's done. Yes, it feels a little like they are gambling with my life. However, I do have faith in God, and I ultimately believe that it is He who will determine whether or not I am healed, not a drug. I want to take advantage of the medical resources that are made available, but in this situation, I feel I can not spend too much time worrying about the whole placebo thing. Worst case scenario - I get a placebo and I'm still at 50-55%. (Which is only 6-10% less than if I suffered on interferon for a year, and that's only for the first five years.)
So, with all this information in front of us, Jon and I are on the same page. We are leaning toward the clinical trial, heading into it with prayers and hope that God would see fit to provide me with the actual drug, and if not, that He would open up another door for us down the road. We haven't made up our minds for certain, though. We have until January 12th. Your prayers are greatly coveted!!! We need a decision, and we need peace of mind.
p.s. We also need the melanoma to NOT come back as there is a high chance of recurrence. NO MORE MELANOMA. Repeat after me.... no more melanoma.... no more melanoma....
Okay - just a bit more. If you've made it this far you are a true champion. Just to keep you up to date - I had a JP drain put in after my surgery on December 7th. It was still draining lots at my appointment with the surgeon (Dr. Dabbs) two weeks post-surgery, so she left it in, thinking she would remove it at my appointment with her on January 3rd. On the 23rd it because very painful - like little razorblades cutting into the area when I moved. Erica and Brent arrived that night, and I headed into the hospital to get checked out. I had an infection, and was treated with iv therapy. I went in once a day for iv treatment over Christmas (hence two tubes in my body - one drain and one iv in the elbow of my right arm), and on Sunday morning, as we were getting ready for church, I realized I had no more pain! Yay - the infection must be going away. I was getting ready for my shower - I stood up and my drain slid right out. We went to the hospital instead. :) They dressed it up and sent me home, telling me to come back at least once a day as it was still draining lots. I spent several days with a drenched side feeling quite uncomfy, trying to do nighttime dressing changes at home, and unable to bend my right arm due to the iv, but eventually, the draining started letting up and the iv came out. I'm feeling pretty good these past few days. No tubes, no drainage, and no home-dressing changes. I am still going in every morning to be assessed as the area is red and warm and there is hard tissue under my arm that they are trying to keep an eye on, but I feel great otherwise.
Mom, Jon, and I were fortunate enough to have Erica and Brent and kids here for a week for Christmas. Lots of fun but Erica - we forgot about the train cake!!!!! We had a few dinner dates with wonderful friends this week to help ring in the New Year, and Mom and I de-Christmassed the house yesterday. I have to admit - the tree made my living room look better. Tree is better than no tree...
There.... wow. We've had company (twice) and lunch since I started writing this. Kudos if you made it through. God bless you all. You continue to be instrumental in my positive outlook. And we continue to strive to know God better - to study and pray and grow closer together as we grow closer to Him. Thank you for your prayers! We love you.
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