I have had a whirlwind of adventures in the last couple weeks! Not all adventures are fun. I will start back with the appointment with Dr Paneres (at St Jude) to discuss my options. I went back to him and he pretty had spoke to the UCI doctor and agreed with her. He did seem pretty leery about me going on this new drug, Stivarga. He told Jon and I that the longest ANY of his patients that he put on this particular drug lasted on the drug a whole 5 DAYS since the day they started the drug. Yep! You heard me correctly, 5 days and they either choose to go off because the side effects are too harsh or the Dr let them know their side effects were too harsh so he took them off the drug. If I am going to get the side effects, they will hit by the end of the first week. They hit hard and fast!! But, if I continue to do well, they up the dose 40 mgs more and continue this until I am on the full dose of 160 mgs. This drug has NASTY side effects! The most dangerous ones are high blood pressure and it messes with your liver!. We are not talking a drug that slowly raises your blood pressure. This drug makes your BP SPIKE THRU THE ROOF to the point that you need to be hospitalized. One minute, you are completely normal, the next you are needing a visit to the ER! This is the most scary side effect for me, as I already have high blood pressure and am on 2 prescriptions to control it now. The good thing about that is, I know what the symptoms of high BP is and know a few tricks to bring it down on my own. I also have a hospital grade BP monitor here at home and can monitor my BP at any given moment. Also, they said that since I am already on BP meds, that actually works to my benefit and if something happens they can just adjust my meds as needed. The liver... I have to pay attention to make sure my urine is not turning darker than it is or super lighter than it is. The reason I am not really concerned with this one is, the dr said he will be checking my liver OFTEN thru blood work and they should be able to catch that there is something wrong WAY before I exhibit any symptoms of liver damage.
Another nasty side effect is that this medicine will cause your hands and feet to discolor, burn, blister, peel, crack and bleed to the point that you can not walk! Here is the plus side (for me personally) There is one other drug that causes this same side effect, not to the degree that Stivarga hits, but it can get pretty bad causing people to go off this other drug also. I was on that other drug for over a year and the ONLY symptom that happened to me was my hands and bottoms of my feet looked like there were newsprint all over them! SHOUT OUT TO POSH'S HEALER STICK AND FRESH CREAMY MILK BODY BUTTER FOR THAT!! They never burned, hurt, cracked, got dry, NADA! So, they think that if I continue with that same regiment of Posh products, I will do well in this department also! This drug has also been known to cause sores in your mouth, which makes eating anything hot, cold, salty or spicy, not such a pleasant task. Then we have what we cancer patients like to call, "Chemo Brain". If you have spent any amount of time with me, you will know I have this BAD! This new drug actually intensifies that. For example, my chemo brain now would be something as annoying as repeating what I have said a billion times to someone and I have NO remembrance at all of telling that person at ALL! Even when they start telling me where we were when I said it or why I even brought it up! My good friends and family pretty much just humor me and let me say something over and over again. There are some people tho, that will correct me, cut me off (Lovingly) saying I already mentioned that! This sometimes hurts me, I feel like I am annoying them to the point, I will try not to say too much because I look stupid always repeating. I just want to be as normal as possible and when someone (Even in a lovingly way) tells me I have said it a bajillion times, I want to run and hide and try to become the smart woman I once was! With chemo brain, it is common to walk into a room and forget why you came in there. You forget appointments, You repeat yourself like a parrot. But Stivarga brain, kicks that up a notch. Not only will you have chemo brain, but you will also forget every day things like your telephone number, how to sign your name, directions to your house, etc... So this should be fun! Then you have your every day run of the mill chemo side effects. Nausea, vomiting, diarrhea, constipation, fatigue, sleeplessness, yada yada yada... Those we know I can handle! I was told that the first week of taking Stivarga is the most dangerous. If you are going to have side effects, they show their ugly faces in the first week. So my doctor wanted to make sure all the other chemo is completely out of my system before I started this new one, We did not want WWIII to start in my body because we had overlapping chemos! This drug is strong enough without needing left over chemo in my body to help take over my body!. My dr at St Jude admitted he had learned from the UCI dr to start me on a half dose and gradually increase from there. So I will be his first patient to start at a half dose and will be the first person to make it FAR passed 5 days!! Hee Hee... TOO SOON TO CLAIM VICTORY? I don't think so! I am coming to the battle well prepared! So we wrap up our appointment and plan for me to start this Stivarga on March 23rd! We wanted to have some down time before the fight, the calm before the storm! We REALLY needed time to pray! So we felt this situation, about taking the Stivarga, with Dr Paneres (my St Jude oncologist) was not feeling the same way the UCI dr felt. She, (UCI dr) made me think that with my passed history with handling chemo side effects, I will be just fine. Then, I have MY actual oncologist Roy Paneres having me think that I won't make it thru the first week!! So, we left the appointment not as hopeful! But, just like I felt that God was whispering in my ear that the last CT Scan I had, was going to come back with growth and my life would be changing drastically. I have the same tugging at my heart, but this time it is telling me, "No matter what happens, YOU ARE going to be OK!" It;s not so much an audio voice, but its like a peace washes over me and my anxiety is under control. I haven't had any major mood swings, just going with the flow! I just feel God's loving arms around me at this time! I just wish Dr P would get the same message from God, so he can quit being such a Debbie Downer!
After the appointment with Dr P ended, we scheduled our next appointment to be on April 6th, right in the middle of my first cycle of the drug. There he will do a blood test to check my CEA (cancer) numbers and check on my liver function. I am thinking we will also be discussing when I should do my next CT scan also. We leave and decide, until I start Stivarga in 2 weeks, LET'S TAKE A CANCER BREAK! Sounds like a awfully good idea to me, since there really wasn't anything I could do on the Cancer front at this time!
So, the first few days pass and I start getting a little nervous that this horrible drug is chasing behind me and starting to catch up! I only have a little over ONE WEEK LEFT!
So, what you think happens on good ol' Friday the 13th of March.... YEP, ER TRIP!!!!! Oh man oh man! Where to begin with that mess? I knew I was having a small bowel obstruction.:What it is, is because I have had so many abdominal surgeries, my
intestines have scar tissue. This scar tissue will randomly start
moving around and TWIST my intestine. Usually I can tough them out at home, but this time, I couldn't take the pain! I was throwing up and couldn't get comfortable or anything. I looked at Jon and said, "We need to go to the ER, This one is bad!" So I get cleaned up and head out the door at 11pm, THE ER WAS PACKED!! People had been waiting for over 5 hours to be seen! It was a straight HOT MESS! So, because of my condition, I got called back right away! But I was in a LOT of pain and could not take my own meds bc if they needed to do surgery to untwist the scar tissue, then they would have to wait even longer bc I wouldn't have been allowed to be put under with how many pain killers I take in a day! So, I am in pain, I usually take 200 mg of Kaiden 2 times a day, I take (4) 8mg tabs of dilaudid every 4 hours, 1 30mg of Oxycontin every 4 hours amd then 100mg of Morphine before bed. Then I take Methadone 3 times a day! So I finally get into the back ER rooms and I am waiting for someone to do an IV so that I can get some pain relief there! Finally the nurse shows up and just looks... new and confused!! GREAT!! So she tried 5 TIMES to hit a vein, all over my arms, with no luck!! I looked like a junkie with so many bruises in different areas! Finally, I said, "JUST STOP!! We are not getting anywhere with this and I need my IV to talk my meds that were now over due! So I looked at her and said, "Have you done a port before?" She looked at me meekly and said, "Oh ya! I can do them!" So I took her hand and had her feel each bump, the circumference of it, Teaching her how to do a port while laying in a hospital bed. She came back with all the stuff to access my port and I looked at her and said, "Ok, we need to think this through, do you have everything you need?!" She said she did, I said, "Look again!" She still didn't see the problem! I said, "Do you remember what the first question you are supposed to ask someone with a port?" She thought about it as she was cleaning off my chest to insert the needle into. Then it hit her, I looked at her and said, "Yep, you know! What KIND of port do you have?!" I could tell she was embarrassed but I was not in the mood to play nurse right now! I wanted to be our of pain and cuddled and have all this behind me!! So she picked up the needle and looked at it and said, "This is the needle I will be using to put into your port!" I said, "Oh NO YOU ARE NOT! That is NOT a Power Port needle!! She looked as thou she was going to cry. She ran out of the toom, Jon and I started praying our guts out! She came back and said, "Ok! Is this the one I am supposed to use?" I said, "Yes, lets get this in and going!" So I taught her where to put the needle, to count ONE... TWO... Three and as you say 3, push the needle in! SHE DID IT!! Had great blood return any everything! So remember at this time I am hours from having my pain meds. She came at me with a 1 mg IV of dilaudid. I tried explaining to her that I am on 32 mgs and 1 mg is a JOKE! Needless to say, it was a long, sleepless night and I did in fact have a blockage, I went into withdraw while in the hospital! I couldn't eat but,,, NO SURGERY!!! So they let me go on Sunday and Jon took Monday off so we could catch up on sleep and then that whole following week I had problems, but they are clearing up now!
The following Friday I had another dr call me in to "teach" me more about Stivarga. Pretty much knew everything I could know at this point. She had the same thoughts as the UCI dr, that I am going to be just fine. She brought me over a journal to write my symptoms down everyday, keep track of when I took it and to log my BP numbers. She also said she wanted us to call when I actually take the meds so she can write it down on her calendar and keep track of where I am at on Stivarga at all times.
So today, at 10am , I took my first dose. I had Jon call the dr and let her know we took it and she said, "Ok! I didn't want to scare you, but this hour is the most critical!!! If she is going to have an allergic reaction, it will be now until 11am, so keep a close eye on her! Umm!!! THANKS A LOT!! So of course any bump, pinch or ache was magnified. but I made it just fine! Then Jon took the rest of the week off in case my symptoms do end up showing up!! So to pass the time, my mom and I filled 300 plastic eggs for the Easter Egg hunt here on Sunday, we are doing an Easter on the Sunfsy before because we have Easter and my nephews birthday up in Victorville on Easter Sunday and a lot of people can't make it up there! After we filled those eggs, Jon and i went shopping at Walmart! I also have been constantly taking my BP and it has been good all day! We are still not out of the woods yet! But PLEASE KEEP PRAYING!! HE REALLY IS LISTENING!!! NO SIDE EFFECTS!! I have a family to run and love on!!
Tuesday, March 24, 2015
Saturday, March 7, 2015
Off to UCI
A few days after my appointment, where Dr P told me that I would not be doing chemo anymore, I got a phone call from Dr Seery's office at UCI. They made my appointment for March 5th. I was so excited because that gave me time to live a little bit before our next step in our cancer journey. Then the nurse who was booking the appointment said, "Oh no! I just saw that your dr put a rush on this! I will need to call you back and make an appointment for a sooner date." I said, "Let me talk to my dr first! Maybe the 5th will be ok with him! I have so much I was to do before I start at UCI! I think he will say it will be ok to keep this date!" She agreed and told me that she was leaving it to me to change the appointment if he wants a sooner date! Well, thankfully, Dr P said that the March 5th appointment was just fine! YAY!! It's the little miracles, where things just work out like they are supposed to, where you really see God's fingerprints! I have learned to stop looking for these, "PART THE RED SEAS", miracles. (Not that those are not important too) But when I really feel like God's hand is on me, is when its just the little things that would only matter to me and seem so insignificant to other's, that I know my God is still walking with me!
So being off chemo this time is a little different than the other times. I don't really feel like I have been off chemo for over a month! Usually by now, I am feeling almost normal. As of tonight, I still feel like the poison is running thru my veins. I don't have the "vacation" that I usually have, it kind of worries me, but then again, I just had my CT scan a little over a month ago and there was only a slight growth. Maybe I am just pushing myself harder than normal. Jon and I had decided that we would not live like I have cancer for the time that I am off chemo! We would live life to the fullest and keep making as many memories with our kids as we can! For Christmas, Jon's sister in law Angie, got her father to get us 2 tickets to Disneyland and sign 3 of us into Disneyland! (If you know me, this is the BEST Christmas gift in the world! My personal heaven would be DISNEYLAND!) So on Josiah's 11th birthday (Feb 12th) we surprised the kids and took them to Disneyland for the day! I got a wheelchair because I knew there was no way I could walk around Disneyland all day! I was worried I was going to embarrass the boys, but they didn't even bat an eye! This was our first trip to Disneyland that the kids were all tall enough to go on the big kid rides! So this was the first trip that I was not sitting at the exit of Star Tours or Big Thunder Mountain, with a stroller filled with a crabby baby! It was the absolute BEST Disneyland trip we have gone on as a family!
Then on the 17th of February, Jon and I celebrated our 14th wedding anniversary! IT WAS AMAZING!!! Jon and I went to dinner that night at Red Lobster. Then we picked up the kids. Jon bought a top tier of a wedding cake, decorated in our wedding colors and in one of the flavors that our wedding cake had! (Chocolate cake with raspberry filling) Then he had dug around our storage unit for hours earlier that day and he found our wedding video! We had to borrow a VCR from our neighbors, but after we cut the cake and ate the cake with the kids and my parents, we all sat down to watch our video (this was the kids and my parents first time seeing it!) It was beautiful!! The kids were stuck to it like glue! Remarking how young (and thin) everyone looked. It was the most romantic anniversary we have ever celebrated! But it doesn't stop there! We decided to go to Las Vegas to continue or celebration. Jon and I left on Wednesday the 25th and then on Friday the 27th, my parents came up and brought the kids with them! It was a great trip! We all had a blast and really needed that time away. We knew our "cancer vacation" was coming to a close and quickly! On Saturday night (the 28th), I laid in bed, wide awake. Looking at my husband and children and cried (quietly) my eyes out! It is so hard to not think, "This is the last night we will ever be in Las Vegas together ever again!" I try really hard not to let the enemy take my joy, but it is getting harder and harder with each day that passes! I remember driving out of Disneyland's parking structure and the tears just came out of nowhere! I try not to let anyone see, but that time, Jon reached over and squeezed my hand, letting me know he was feeling it too!
So March 5th came sooner than I would have liked it! I had been literally shaking for a full 24 hours before my appointment! I kept complaining to Jon, "I don't want to go!! Don't make me do this! Let's keep living like I have no cancer!" Of course being the amazing husband he is, he kept telling me, "We don't have to do anything you don't want to do! If you don't want to do clinical trials, we won't!!! We will walk out and live out the rest of our life together! But, I think it is worth it to just hear what they have to offer." UGH!!! FINE!!! We left for UCI at 2pm, giving us 30 minutes for traffic and to get lost. Well, we pulled right up! Found the cancer building right away. We waited outside for my best friend, Kira, to meet us there. She is good at hearing the good, bad and the ugly and make notes of it all!
So we all go in, all shaking in our boots! We go up to the 2nd floor, check in and I fill out a few new patient forms, when we get called back. We all go into a exam room. There is a nurse who takes my vitals and starts filling in my information into the computer. She puts in all my vitals, asked me questions like if I smoke, drink, etc.. Then she asks to list my medications. HOLY COW! So I start off with my pain meds, around the 4th med, she looked at me and said, is that all? Jon and I looked at her and started laughing and said, "Oh no! We are just getting started!" It took us literally 15 minutes to list everything I take on a daily basis! The nurse's head was spinning! Dr Seery's assistant tried 2 different times to come in and we were not done yet! We finally just said, "You have the just of them! We are good now!" The nurse started laughing and said, "I don't even know how you function!!" Ya! Neither do I lady!! So she leaves and the assistant comes in! He introduces himself and says, "Don't worry about telling me anything, I have studied you and know your entire history!" He knew it all without even looking at notes! He knew dates of surgeries, he knew the date I was diagnosed and how I was diagnosed... It was quite impressive! So he starts telling us the plan of attack. He said that Dr Seery would be in, in a few minutes and answer any questions we had about anything! He said that there is a drug that is FDA approved, called Stivarga. (Jon and I had heard of it 2 years ago, when it was first FDA approved, from Dr P. He told us there was a new drug that was just approved and it was sort of a "super Avastin" and he thought I would be a great candidate for it since I responded so well to Avastin.) I said, "This is the drug that is sort of a "super Avastin" correct?" and he said, it was from the same family. He said it was kind of like Avastin, in that it cuts off the blood supply to the tumors, therefore not feeding the tumors and they stop growing. The down side is the side effects! THEY ARE MONSTERS! Most people have to stop taking the Stivarga because the side effects are too much to handle and ruining their quality of life. Other than the normal, vomiting, hair loss, feel crummy side effects. The worst side effects tear up the palms of your hands and the bottoms of your feet. Pretty much the drug causes discoloration, boils, cracks, peeling, bleeding, etc... on the palms of your hands and the bottom of your feet. The same side effect as the drug Xeloda, I had been on for over a year and all it did was cause discoloration to my hands and feet. People described them as looking like I had been reading a newspaper and the print was still on my hands. They never cracked, peeled or bled! I would slather them in a body butter from Posh (of course) that was a shea butter based lotion and also would rub Posh's, Healer Stick (100% shea butter stick) all over them constantly! So I felt confident that I was going to be just fine! I had Posh on my side! He looked at me like, I don't think so! He said, "These side effects are REALLY, REALLY BAD!! Most people can not stay on the drug and the people who do stay on it, have a lot of the side effects and just live with it!" I was feeling discouraged! But then he said, "We also have another card in our hands to play! We will study your cancer and try to find a mutation. No 2 cancers are the same, that is why not all chemo's work for every person! They have mutations in each of the cancers that make them all different. So we will look for a mutation that is not only in your colon cancer but in a different type of cancer, say, Kidney cancer, Then we will use the chemo that was actually made for kidney cancer to try and kill your cancer which has that same mutation!" I started feeling something I hadn't felt in a long time HOPE!!!! It was a BEAUTIFUL feeling!! Here I was, begging Jon to not make me go and this guy is actually talking to me like we are going to attack this cancer finally! It was amazing!! So then he said, "After that we will look into clinical trials!"
So then Dr Seery came in! NOT AT ALL WHAT I WAS PICTURING! She was this young, beautiful, blonde woman, who looked like someone I would hang out with! She introduced herself and shook our hands. She started off by saying how good I looked and that she was kind of wondering why my dr would send me to her! She repeated everything that her assistant had said about our course of action. She then said that the normal dose of the Stivarga was 160mgs. But she is going to recommend that my dr start at 80mgs and slowly increase from there. She said that they have had WAY better success in people tolerating the side effects that way. She also said that unlike other cancer drugs/chemo's, we would know within the first week of taking Stivarga, if the side effects are going to be tolerable or not. She said the side effects hit hard and fast with this drug. She asked if there were any questions. Kira asked, "How long can a person be on Stivarga?" She said, "Great question!! As long as the person can tolerate it! There was a woman, who is right down the hall right now, who was in really bad shape! I didn't think she had a chance! But we put her on Stivarga, that was over a YEAR ago and she just got back from a vacation out of the country!!!" We just sat there staring at each other with our mouths hanging wide opened!! A YEAR??? Here I was thinking I had maybe a couple months left!! HOPE!!! HOPE!!!!! HOPE!!!!!!
Then she went into the whole mutation thing. Saying how they would test my tumor and study it to find a mutation that is in a different cancer. She then said, "So when you are getting biopsied, tell them you need 3 cores!!! Usually what happens is they don't get enough and you have to repeat the procedure!" I looked at her and said, "WHAT???!!! They already have my tumor! They kept it when my colon blew in 2011! She said, "That was YEARS ago! It has probably mutated since then!" I said, "So, like a liver biopsy?" Dr Seery said, "Yes probably" I said, "NOPE!! I AM NOT DOING IT!! So you all better PRAY this Stivarga works because I will NOT be doing another liver biopsy! I have already said I would never do it again!" THEY ARE HORRIBLE!! I can not even imagine doing one again! Not to mention, they can't even put you to sleep because they need you to hold your breath and release it at certain times! It is HORRIBLE!!! So please please please pray the Stivarga works for me!!!
After that fiasco, she told me she wants to refer me to her genetic counselor. They think there may be a link between my mom's Neurofibromitosis and the colon cancer. She also said that doing this testing will also make sure my kids don't fall thru the cracks and miss getting tested for colon cancer. She said that the "old" rule of thumb was to have the kids tested 10 years before my diagnosis, which would make them 23 years old when they have their first Colonoscopy. But she says she is pretty sure her genetic counselor will have them tested before 23! She said the genetic testing would be done there at UCI and it would only benefit my kids and future family members by doing this! So of course, this is not an option, I will be doing it! (unless it involves a liver biopsy! LOL!)
So after going over everything with her, she told us that there actually was not a clinical trial there at UCI that would fit my needs! Which was a complete bummer because I LOVED HER!! I would LOVE for her to be my dr from here on out! She said she was sending me back to Dr P, then she said, "I am actually a little confused on why he sent you to me in the first place! You are no where NEAR clinical trials!" and said she would call him tomorrow with her recommendations on what to do with me now!
Next step is going to see my dr back at St Jude. I have an appt with him on Monday and we will go over what we will be doing next. I do want to take another 2 weeks off before starting any new drugs. I just want to make sure all the other chemo's and drugs are out of my system because Dr Seery said that the Stivarga's side effects will be amplified if I still have Xeloda or CPT-11 in my system! So I don't want to risk that AT ALL!
WE HAVE HOPE!!! We always have HOPE with Christ, but sometimes when you are in the fire, you just plain forget!! Keep praying, He is listening! I love you all!!
So being off chemo this time is a little different than the other times. I don't really feel like I have been off chemo for over a month! Usually by now, I am feeling almost normal. As of tonight, I still feel like the poison is running thru my veins. I don't have the "vacation" that I usually have, it kind of worries me, but then again, I just had my CT scan a little over a month ago and there was only a slight growth. Maybe I am just pushing myself harder than normal. Jon and I had decided that we would not live like I have cancer for the time that I am off chemo! We would live life to the fullest and keep making as many memories with our kids as we can! For Christmas, Jon's sister in law Angie, got her father to get us 2 tickets to Disneyland and sign 3 of us into Disneyland! (If you know me, this is the BEST Christmas gift in the world! My personal heaven would be DISNEYLAND!) So on Josiah's 11th birthday (Feb 12th) we surprised the kids and took them to Disneyland for the day! I got a wheelchair because I knew there was no way I could walk around Disneyland all day! I was worried I was going to embarrass the boys, but they didn't even bat an eye! This was our first trip to Disneyland that the kids were all tall enough to go on the big kid rides! So this was the first trip that I was not sitting at the exit of Star Tours or Big Thunder Mountain, with a stroller filled with a crabby baby! It was the absolute BEST Disneyland trip we have gone on as a family!
Then on the 17th of February, Jon and I celebrated our 14th wedding anniversary! IT WAS AMAZING!!! Jon and I went to dinner that night at Red Lobster. Then we picked up the kids. Jon bought a top tier of a wedding cake, decorated in our wedding colors and in one of the flavors that our wedding cake had! (Chocolate cake with raspberry filling) Then he had dug around our storage unit for hours earlier that day and he found our wedding video! We had to borrow a VCR from our neighbors, but after we cut the cake and ate the cake with the kids and my parents, we all sat down to watch our video (this was the kids and my parents first time seeing it!) It was beautiful!! The kids were stuck to it like glue! Remarking how young (and thin) everyone looked. It was the most romantic anniversary we have ever celebrated! But it doesn't stop there! We decided to go to Las Vegas to continue or celebration. Jon and I left on Wednesday the 25th and then on Friday the 27th, my parents came up and brought the kids with them! It was a great trip! We all had a blast and really needed that time away. We knew our "cancer vacation" was coming to a close and quickly! On Saturday night (the 28th), I laid in bed, wide awake. Looking at my husband and children and cried (quietly) my eyes out! It is so hard to not think, "This is the last night we will ever be in Las Vegas together ever again!" I try really hard not to let the enemy take my joy, but it is getting harder and harder with each day that passes! I remember driving out of Disneyland's parking structure and the tears just came out of nowhere! I try not to let anyone see, but that time, Jon reached over and squeezed my hand, letting me know he was feeling it too!
So March 5th came sooner than I would have liked it! I had been literally shaking for a full 24 hours before my appointment! I kept complaining to Jon, "I don't want to go!! Don't make me do this! Let's keep living like I have no cancer!" Of course being the amazing husband he is, he kept telling me, "We don't have to do anything you don't want to do! If you don't want to do clinical trials, we won't!!! We will walk out and live out the rest of our life together! But, I think it is worth it to just hear what they have to offer." UGH!!! FINE!!! We left for UCI at 2pm, giving us 30 minutes for traffic and to get lost. Well, we pulled right up! Found the cancer building right away. We waited outside for my best friend, Kira, to meet us there. She is good at hearing the good, bad and the ugly and make notes of it all!
So we all go in, all shaking in our boots! We go up to the 2nd floor, check in and I fill out a few new patient forms, when we get called back. We all go into a exam room. There is a nurse who takes my vitals and starts filling in my information into the computer. She puts in all my vitals, asked me questions like if I smoke, drink, etc.. Then she asks to list my medications. HOLY COW! So I start off with my pain meds, around the 4th med, she looked at me and said, is that all? Jon and I looked at her and started laughing and said, "Oh no! We are just getting started!" It took us literally 15 minutes to list everything I take on a daily basis! The nurse's head was spinning! Dr Seery's assistant tried 2 different times to come in and we were not done yet! We finally just said, "You have the just of them! We are good now!" The nurse started laughing and said, "I don't even know how you function!!" Ya! Neither do I lady!! So she leaves and the assistant comes in! He introduces himself and says, "Don't worry about telling me anything, I have studied you and know your entire history!" He knew it all without even looking at notes! He knew dates of surgeries, he knew the date I was diagnosed and how I was diagnosed... It was quite impressive! So he starts telling us the plan of attack. He said that Dr Seery would be in, in a few minutes and answer any questions we had about anything! He said that there is a drug that is FDA approved, called Stivarga. (Jon and I had heard of it 2 years ago, when it was first FDA approved, from Dr P. He told us there was a new drug that was just approved and it was sort of a "super Avastin" and he thought I would be a great candidate for it since I responded so well to Avastin.) I said, "This is the drug that is sort of a "super Avastin" correct?" and he said, it was from the same family. He said it was kind of like Avastin, in that it cuts off the blood supply to the tumors, therefore not feeding the tumors and they stop growing. The down side is the side effects! THEY ARE MONSTERS! Most people have to stop taking the Stivarga because the side effects are too much to handle and ruining their quality of life. Other than the normal, vomiting, hair loss, feel crummy side effects. The worst side effects tear up the palms of your hands and the bottoms of your feet. Pretty much the drug causes discoloration, boils, cracks, peeling, bleeding, etc... on the palms of your hands and the bottom of your feet. The same side effect as the drug Xeloda, I had been on for over a year and all it did was cause discoloration to my hands and feet. People described them as looking like I had been reading a newspaper and the print was still on my hands. They never cracked, peeled or bled! I would slather them in a body butter from Posh (of course) that was a shea butter based lotion and also would rub Posh's, Healer Stick (100% shea butter stick) all over them constantly! So I felt confident that I was going to be just fine! I had Posh on my side! He looked at me like, I don't think so! He said, "These side effects are REALLY, REALLY BAD!! Most people can not stay on the drug and the people who do stay on it, have a lot of the side effects and just live with it!" I was feeling discouraged! But then he said, "We also have another card in our hands to play! We will study your cancer and try to find a mutation. No 2 cancers are the same, that is why not all chemo's work for every person! They have mutations in each of the cancers that make them all different. So we will look for a mutation that is not only in your colon cancer but in a different type of cancer, say, Kidney cancer, Then we will use the chemo that was actually made for kidney cancer to try and kill your cancer which has that same mutation!" I started feeling something I hadn't felt in a long time HOPE!!!! It was a BEAUTIFUL feeling!! Here I was, begging Jon to not make me go and this guy is actually talking to me like we are going to attack this cancer finally! It was amazing!! So then he said, "After that we will look into clinical trials!"
So then Dr Seery came in! NOT AT ALL WHAT I WAS PICTURING! She was this young, beautiful, blonde woman, who looked like someone I would hang out with! She introduced herself and shook our hands. She started off by saying how good I looked and that she was kind of wondering why my dr would send me to her! She repeated everything that her assistant had said about our course of action. She then said that the normal dose of the Stivarga was 160mgs. But she is going to recommend that my dr start at 80mgs and slowly increase from there. She said that they have had WAY better success in people tolerating the side effects that way. She also said that unlike other cancer drugs/chemo's, we would know within the first week of taking Stivarga, if the side effects are going to be tolerable or not. She said the side effects hit hard and fast with this drug. She asked if there were any questions. Kira asked, "How long can a person be on Stivarga?" She said, "Great question!! As long as the person can tolerate it! There was a woman, who is right down the hall right now, who was in really bad shape! I didn't think she had a chance! But we put her on Stivarga, that was over a YEAR ago and she just got back from a vacation out of the country!!!" We just sat there staring at each other with our mouths hanging wide opened!! A YEAR??? Here I was thinking I had maybe a couple months left!! HOPE!!! HOPE!!!!! HOPE!!!!!!
Then she went into the whole mutation thing. Saying how they would test my tumor and study it to find a mutation that is in a different cancer. She then said, "So when you are getting biopsied, tell them you need 3 cores!!! Usually what happens is they don't get enough and you have to repeat the procedure!" I looked at her and said, "WHAT???!!! They already have my tumor! They kept it when my colon blew in 2011! She said, "That was YEARS ago! It has probably mutated since then!" I said, "So, like a liver biopsy?" Dr Seery said, "Yes probably" I said, "NOPE!! I AM NOT DOING IT!! So you all better PRAY this Stivarga works because I will NOT be doing another liver biopsy! I have already said I would never do it again!" THEY ARE HORRIBLE!! I can not even imagine doing one again! Not to mention, they can't even put you to sleep because they need you to hold your breath and release it at certain times! It is HORRIBLE!!! So please please please pray the Stivarga works for me!!!
After that fiasco, she told me she wants to refer me to her genetic counselor. They think there may be a link between my mom's Neurofibromitosis and the colon cancer. She also said that doing this testing will also make sure my kids don't fall thru the cracks and miss getting tested for colon cancer. She said that the "old" rule of thumb was to have the kids tested 10 years before my diagnosis, which would make them 23 years old when they have their first Colonoscopy. But she says she is pretty sure her genetic counselor will have them tested before 23! She said the genetic testing would be done there at UCI and it would only benefit my kids and future family members by doing this! So of course, this is not an option, I will be doing it! (unless it involves a liver biopsy! LOL!)
So after going over everything with her, she told us that there actually was not a clinical trial there at UCI that would fit my needs! Which was a complete bummer because I LOVED HER!! I would LOVE for her to be my dr from here on out! She said she was sending me back to Dr P, then she said, "I am actually a little confused on why he sent you to me in the first place! You are no where NEAR clinical trials!" and said she would call him tomorrow with her recommendations on what to do with me now!
Next step is going to see my dr back at St Jude. I have an appt with him on Monday and we will go over what we will be doing next. I do want to take another 2 weeks off before starting any new drugs. I just want to make sure all the other chemo's and drugs are out of my system because Dr Seery said that the Stivarga's side effects will be amplified if I still have Xeloda or CPT-11 in my system! So I don't want to risk that AT ALL!
WE HAVE HOPE!!! We always have HOPE with Christ, but sometimes when you are in the fire, you just plain forget!! Keep praying, He is listening! I love you all!!
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