Friday, October 31, 2014
I'm in!
Just received word from Mass General that all the tests looked good and I'm all set to start Wednesday! Praise God everyone and celebrate for me!!!
Thursday, October 30, 2014
long day yesterday
Everything seemed to go well yesterday. We don't have the results of the ECHO but the EKG and the eye exam went well. The nurse will call with results of the ECHO and also let me know if they were able to obtain enough of my tumor samples to not do a biopsy. I sure hope so!
We are scheduled to be back up for my first infusion on Wednesday the 5th at 10am. I am both anxious and nervous about all of this. I want to get on the drugs ASAP as I have been experiencing a lot of pain and i am really worried about having fluid build up in my abdomen as that causes so much discomfort and eating problems.
I am going to try to enjoy this next week before I start treatment and hope that I feel well enough to continue to get out and get things done before I start. Some side effects they mentioned I will likely experience are a face rash and flu like symptoms. Neither sounds fun!
Please keep me in your prayers as we have such a long unknown journey ahead of us!
We are scheduled to be back up for my first infusion on Wednesday the 5th at 10am. I am both anxious and nervous about all of this. I want to get on the drugs ASAP as I have been experiencing a lot of pain and i am really worried about having fluid build up in my abdomen as that causes so much discomfort and eating problems.
I am going to try to enjoy this next week before I start treatment and hope that I feel well enough to continue to get out and get things done before I start. Some side effects they mentioned I will likely experience are a face rash and flu like symptoms. Neither sounds fun!
Please keep me in your prayers as we have such a long unknown journey ahead of us!
Thursday, October 23, 2014
trial info
I have all my tests next wednesday, starting at 7am. It is going to be a long day for us, as they fit them all in one day. Then the following wednesday, November 5, I start the trial with the IV drug. The first infusion is an hour and then I have to wait around for 3 hours after to see if I have any reactions. The other drug is a pill that I take each morning. I get the infusion 2 weeks in a row as well as take the pill and then I get a week off from both. They said that the second time I receive the infusion it can be done in 30 mins and I only have to wait around for an hour after to make sure I don't have any adverse reactions to it.
The trial can be found here if you are interested in reading about it
http://clinicaltrials.gov/show/NCT01988896
I feel very fortunate to have been chosen for this, I am the first one at Mass General on the trial (which kind of freaks me out). The Dr said that there are hundreds of people wanting in on this trial and she somehow chose me. I do have the KRAS mutation they talk about on the website so I know that was a deciding factor but I am sure she could have found someone else that fit the bill. I just feel so blessed that things fell into place as they did and want to express my gratitude for everyone constantly praying for me, I feel as though God made this happen and I have everyone to thank for their prayers. I also of course continue to pray that these drugs are effective in shrinking the tumors!!
Wednesday, October 22, 2014
bad news and good news
I sit here holding my breath, could something good actually be happening to me? Let me start from the beginning...
On our vacation a few weekends ago we sat with a pulmonologist who works for a pharmaceutical company. He was telling the man next to him how they had just developed this immunotherapy drug that is shrinking tumors and that it has already worked on melanoma and was on the fast track to be approved in 6 months by the FDA, and has been approved. He said that they are now testing it on 30 different cancers and it has little side effects. Wowzers, sign me up! So after hearing all this when I got home I got in touch with the Dr that I talk to about clinical trials at Mass General. She told me that she had a trial similar to this with a drug that wasn't actually the one I had heard about but a different drug by another pharm company and that she could add me to the list. (This didn't mean much to me, you can be on waiting lists for a long time for trials) I then proceeded to try to find a trial with the actual drug I had heard about and thought I had found one that I qualified for. After many phone calls I found out they weren't accepting colorectal patients right now. Big sigh of dissapointment...as I have been experiencing some concerning symptoms and wonder if the chemo is working. Then I go to my apt monday and the Nurse Practictioner thinks we should do a scan instead of treatment to check things out.
I got a call mid day yesterday from my oncologist, realizing they would only call with bad news I cringed as I answered the phone. She told me that the spots on my liver had grown. She said that she would recommend adding in the drug that I am refusing to take (the one that makes me throw up before I even get home) and I gave an indication that was not happening, she then told me that my dr at Mass General had just called her asking how I was doing and telling her that she had an opening for me on a clinical trial. The same one I had emailed with her about a few weeks ago. These open slots are hard to come by and you have to have been without chemo for so many weeks to qualify so they are competitive and you have to jump on them. She proceeds to tell me that the following day I need to sign consents and get this thing rolling. I was able to get an apt for today and have the research nurse send me the consent forms to read before the appointment.
The great thing about the trial is that it is a Phase B1 which means they have already come up with the therepeutic dose necessary (the other trial I had been following was only at the stage of determining the highest dose tolerable). They are focusing on efficacy now (great to hear!) One of the drugs is an antibody (a protein produced by the body's immune system) that may help the immune system stop or reverse the growth of tumors. The other drug acts by blocking a protein called MEK, which has been linked to the devlopment of growth of multiple cancers. Basically it makes the cancer visible to the immune system so that it can do it's job.
So I signed the consent forms and I am going to have to go through a series of tests to make sure I qualify. I have to get an ECG, an ECHO, possibly a biopsy, an eye exam amongst other things. This all has to happen at Mass General, so lots of driving back and forth to Boston. The one downfall to all this is how long will it take before the drugs start working? I'm already experiencing a lot of pain from my tumors on my belly making it difficult to sleep and also just function day to day. I am very nervous about fluid accumulating in my belly as that causes such discomfort.
So I am thanking you all for your prayers, this seems like exactly what we've been waiting for and wanting and hoping and praying for! Let's just pray that everything from here goes smoothly and we can get this thing started and shrink those tumors! I'll keep you posted on the tests and everything, my faithful followers! :)
On our vacation a few weekends ago we sat with a pulmonologist who works for a pharmaceutical company. He was telling the man next to him how they had just developed this immunotherapy drug that is shrinking tumors and that it has already worked on melanoma and was on the fast track to be approved in 6 months by the FDA, and has been approved. He said that they are now testing it on 30 different cancers and it has little side effects. Wowzers, sign me up! So after hearing all this when I got home I got in touch with the Dr that I talk to about clinical trials at Mass General. She told me that she had a trial similar to this with a drug that wasn't actually the one I had heard about but a different drug by another pharm company and that she could add me to the list. (This didn't mean much to me, you can be on waiting lists for a long time for trials) I then proceeded to try to find a trial with the actual drug I had heard about and thought I had found one that I qualified for. After many phone calls I found out they weren't accepting colorectal patients right now. Big sigh of dissapointment...as I have been experiencing some concerning symptoms and wonder if the chemo is working. Then I go to my apt monday and the Nurse Practictioner thinks we should do a scan instead of treatment to check things out.
I got a call mid day yesterday from my oncologist, realizing they would only call with bad news I cringed as I answered the phone. She told me that the spots on my liver had grown. She said that she would recommend adding in the drug that I am refusing to take (the one that makes me throw up before I even get home) and I gave an indication that was not happening, she then told me that my dr at Mass General had just called her asking how I was doing and telling her that she had an opening for me on a clinical trial. The same one I had emailed with her about a few weeks ago. These open slots are hard to come by and you have to have been without chemo for so many weeks to qualify so they are competitive and you have to jump on them. She proceeds to tell me that the following day I need to sign consents and get this thing rolling. I was able to get an apt for today and have the research nurse send me the consent forms to read before the appointment.
The great thing about the trial is that it is a Phase B1 which means they have already come up with the therepeutic dose necessary (the other trial I had been following was only at the stage of determining the highest dose tolerable). They are focusing on efficacy now (great to hear!) One of the drugs is an antibody (a protein produced by the body's immune system) that may help the immune system stop or reverse the growth of tumors. The other drug acts by blocking a protein called MEK, which has been linked to the devlopment of growth of multiple cancers. Basically it makes the cancer visible to the immune system so that it can do it's job.
So I signed the consent forms and I am going to have to go through a series of tests to make sure I qualify. I have to get an ECG, an ECHO, possibly a biopsy, an eye exam amongst other things. This all has to happen at Mass General, so lots of driving back and forth to Boston. The one downfall to all this is how long will it take before the drugs start working? I'm already experiencing a lot of pain from my tumors on my belly making it difficult to sleep and also just function day to day. I am very nervous about fluid accumulating in my belly as that causes such discomfort.
So I am thanking you all for your prayers, this seems like exactly what we've been waiting for and wanting and hoping and praying for! Let's just pray that everything from here goes smoothly and we can get this thing started and shrink those tumors! I'll keep you posted on the tests and everything, my faithful followers! :)
Monday, October 20, 2014
Scan instead of chemo
I have had a lot of pains lately as well lots of stomach issues. After filing my list of complaints today they wanted to hold off on treatment until next week. I am also getting a scan done today to see what is going on. Will keep you all posted. Delaying treatment a week throws off everything. I was supposed to be on an off week for Thanksgiving and Christmas and now that is a chemo week. Like my mom said, only thing worse than chemo is not getting it.
Sunday, October 19, 2014
a nice card :)
A friend of my mom's sent a card along with her and upon her return last night I got to read it. It is so fitting to my situation that I had to share:
"They say what doesn't kill you makes you stronger. Well, what if you didn't sign up for extra-strength training? What if you'd rather catch a few breaks once in a while? Is that so much to ask? At some point, you'd think you'd be entitled to a free pass or two: skip this challenge. Avoid that crisis. Delete those problems. It's not that you're not strong or that you don't have what it takes to get through this. You are, you do, and you will. But you've built enough character already, and it's time for things to lighten up a little! I know it's not really my call, but if I were in charge of life's wheel of fortune, you'd get a free spin. And I'd be right there, cheering you on!"
"They say what doesn't kill you makes you stronger. Well, what if you didn't sign up for extra-strength training? What if you'd rather catch a few breaks once in a while? Is that so much to ask? At some point, you'd think you'd be entitled to a free pass or two: skip this challenge. Avoid that crisis. Delete those problems. It's not that you're not strong or that you don't have what it takes to get through this. You are, you do, and you will. But you've built enough character already, and it's time for things to lighten up a little! I know it's not really my call, but if I were in charge of life's wheel of fortune, you'd get a free spin. And I'd be right there, cheering you on!"
Thursday, October 16, 2014
An extra week off
So I thought I'd be feeling better than I do this week being off chemo an extra week. I am exhausted and dreading going in on Monday. I try to get all my errands done and take care of everything I need to knowing ill be in bed all next week.
The weather has been so nice, being so warm out especially after a cold weekend away. I am dreading the winter! I am already planning a trip to Arizona!
I have a fun weekend planned with a wedding friday and I'm taking Elly to see Cinderella Saturday with friends. Sunday before chemo is always hard for me, so pray for me that day if you can.
The weather has been so nice, being so warm out especially after a cold weekend away. I am dreading the winter! I am already planning a trip to Arizona!
I have a fun weekend planned with a wedding friday and I'm taking Elly to see Cinderella Saturday with friends. Sunday before chemo is always hard for me, so pray for me that day if you can.
Saturday, October 11, 2014
Our vacation spot
We decided to see if our favorite place to go on vacation had any cancellations their closing weekend and low and behold they had the room available that I've always wanted to stay in. It is in the adirondack mountains and has a screened in porch! We came here this summer with Bryan's family and they do family seating for dinner. You might remember me talking about this last year. So during the Summer we have such a large group we don't sit with anyone but our family.
This weekend its just the 4 of us so we are sat with other families. i feel like i have no life and nothing to offer to conversations so i try to just ask people about themselves. I have such a hard time when people ask what I do for work. The first year I was out of work and had all intentions of returning I used to talk about my job but now that I've been out of work for over 2 years I have a hard time pretending I still work. I just feel like telling people I stay home with drew is fine but its not really the truth. But the truth is a huge bomb to drop and its an atomic one that you can't just leave on the table and walk away, yet we live with this bomb.
This weekend its just the 4 of us so we are sat with other families. i feel like i have no life and nothing to offer to conversations so i try to just ask people about themselves. I have such a hard time when people ask what I do for work. The first year I was out of work and had all intentions of returning I used to talk about my job but now that I've been out of work for over 2 years I have a hard time pretending I still work. I just feel like telling people I stay home with drew is fine but its not really the truth. But the truth is a huge bomb to drop and its an atomic one that you can't just leave on the table and walk away, yet we live with this bomb.
Tuesday, October 7, 2014
Something to ponder
A friend of mine shared this quote lastnight by a holocaust survivor, Viktor Frankl, "Suffering presents us with a challenge to find goals and purpose in our lives that make even the situation worth living through."
I had to hear this several times in order to comprehend the meaning. For me, suffering is such a constant state I'm in that I found it hard to comprehend it having a purpose. Actually the harder part for me to hear is the living through part. If this means I end up alive in the end then I can tell you that I have certainly gained a deeper purpose in my life and a whole new set of goals. If the outcome is that I'm a beautiful dragonfly then it might take until that transformation happens for me to find a purpose in all this suffering. But never the less I am still living through it so it must be worth living through.
I had to hear this several times in order to comprehend the meaning. For me, suffering is such a constant state I'm in that I found it hard to comprehend it having a purpose. Actually the harder part for me to hear is the living through part. If this means I end up alive in the end then I can tell you that I have certainly gained a deeper purpose in my life and a whole new set of goals. If the outcome is that I'm a beautiful dragonfly then it might take until that transformation happens for me to find a purpose in all this suffering. But never the less I am still living through it so it must be worth living through.
like a rock
I have been wanting to do this hike near my house for a while now because it has a beautiful view (minus the tractor!) and I used to go when I was little. I took my friend, Missy, that is visiting there today and got to lay on a rock sort of in the sun, it was windy but I did it!
Saturday, October 4, 2014
just trucking along
I did not have a great week, with treatment on Monday I wasn't feeling very good on Thursday, throwing up again and just overall not having a good day keeping food down. Today isn't that much better, but at least not getting sick.
I am missing the kids soccer game, partly because Elly won't play when I go she just wants to sit it in my lap and Drew seems to be into it I hope they both play today without mommy there. Not feeling well enough to go today though, my stomach is still off.
not much else to report. I am getting an extra week break from chemo because of the holiday and a wedding we are going to. I am so looking forward to that extra week where I will hopefully feel great. my mom is taking advantage of this time and going home for a few weeks. I am nervous to do things without her here as she mainly takes care of kids and everything household wise that I can't do. I have a friend flying in to help out next week and then bryans mom will be here so hopefully we have everything in place we need.
Such a balance life is, and it is constantly changing!
I am missing the kids soccer game, partly because Elly won't play when I go she just wants to sit it in my lap and Drew seems to be into it I hope they both play today without mommy there. Not feeling well enough to go today though, my stomach is still off.
not much else to report. I am getting an extra week break from chemo because of the holiday and a wedding we are going to. I am so looking forward to that extra week where I will hopefully feel great. my mom is taking advantage of this time and going home for a few weeks. I am nervous to do things without her here as she mainly takes care of kids and everything household wise that I can't do. I have a friend flying in to help out next week and then bryans mom will be here so hopefully we have everything in place we need.
Such a balance life is, and it is constantly changing!
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