Karen's doing great. It feels like we are packing a lot into the summer and having a great time doing it. Last weekend we took the kids to a fairground for example and Ethan & Sydney enjoyed their first rollercoaster. As Ethan(2) said "my heart was going faster and faster". My own was not far off. We will write more about our adventures in future posts. Tonight I want to share a small way in which readers of this blog can help cancer research through Protein Folding.
What is protein folding?
Proteins are biology's workhorses -- its "nanomachines." Before proteins can carry out these important functions, they assemble themselves, or "fold." The process of protein folding, while critical and fundamental to virtually all of biology, in many ways remains a mystery.
How is folding linked to disease?
When proteins do not fold correctly (i.e. "misfold"), there can be serious consequences, including many well known diseases, such as Alzheimer's, Mad Cow (BSE), CJD, ALS, Huntington's, Parkinson's disease, and many Cancers and cancer-related syndromes.
If you'd like to learn more about Protein Folding visit Stanford University's page here: http://folding.stanford.edu/
How can I help?
Download the Folding at Home application from here: http://folding.stanford.edu/English/Download
This application runs in the background and downloads small packets of data from Stanford, performs some analysis on the data and then sends the results back to Stanford.
Will it slow my computer down?
No. The application runs entirely in the background on your PC's spare cycles, time the PC would otherwise be idle.
Ideally you could put it on every machine you have access to (office/work PCs are GREAT for this, especially if they're left on all night).
Do I have to register?
No. But you should put in the Team number for KarensCancer which is "144824". This will link your machine's work to Karen's team and we can track how much analysis has been completed as part of this effort.
Whilst this will not help Karen's case directly, the analysis may help researchers better understand what causes or contributes to cancer and other related diseases.
Monday, August 25, 2008
Sunday, August 10, 2008
Life is Sweet
Our Friday meeting with the wonderous Dr. Dan was great. I was ready to hear what he had to say, and take Don Macleod's words of wisdom to heart, "get the most you can out of your chemo."
Dr. Moriarty said that Dr. Ravikumar was really excited and happy with the most recent scans and really impressed. He couldn't believe how small things have gotten. Both Dr.'s are hoping that if the Oct/Nov PET scan comes back negative there will be no surgery involved. This is a good thing. I know Dr. Moriarty does not want to do surgery again if we can demolish this crap with chemo/erbitux and anything else that doesn't involve major surgery. Why? Because surgery too has its pitfalls and problems that comes along with it, and bottom line both he and Dr. Ravi agree it will not increase my chance for a cure/survival any more than other treatment options at this point.
As far as going back on chemo the plan is this. I will continue with Erbitux every two weeks for the next 3 months (erbitux is an anti-cancer drug not a chemo drug). We will watch my CEA level which Dr. Dan said has been very sensitive up until this point and we will watch that to determine wether to throw the cpt-11 (chemo) back in. Basically if it starts to go up a lot I am back on chemo and that is totally fine with me. I feel that I have regrouped and I am ready to "have at it" as it were if necessary. I am very lucky that my chemo is still effective and that my tumors have continued to respond this long.
In regards to the great news two weeks ago things have been amazing. I feel that I just walked away from a 20 car pile-up on the highway completely unscathed. I have experienced joy that I never felt before and a freedom from a constant underlying fear and panic that I have been dealing with for almost a year and a half. I am so very grateful to God. Miracles may not happen overnight but they do happen. Our prayers don't always seem to be answered the way we think they need to be but they are answered beyond our wildest dreams.
I said to Dr. Dan on Friday that when I came to see him in May of 07 "I was on death row right?" and he said "Karen, you were very, very sick. And I can honestly say without a shadow of a doubt, you are in the top 5 of all time best responders to treatment I have ever seen." I have chills right now relaying that. I said to him that that was great but also very scary.
Jesus said that all we need is the faith of a mustard seed to move mountains. I remember being a little girl and if I saw mountains I would say to myself "okay Jesus move that mountain." Of course that hasn't happened until now and its not because of my faith but of all you amazing, amazing, giving people who have been praying for me and asking others to pray for me and my family. It is because of your faith I am going to live to be old and full of wrinkles.
I cannot tell you how humbling it is and I continue to thank you all from the bottom of my heart and my family's. Please know I pray for you all as well. I know I continue to have a long road ahead but I have a road, and I get to walk on it with all those whom I love. Thank you God.
I will continue to meet with Dr. Dan every two weeks before I go have my erbitux as we watch and see how things go. You are all in my prayers and thank you just doesn't express how grateful I am that all of you and your love and prayers have gotten me so far. Jesus loves each of us and always hears us.
Love,
Karen
Dr. Moriarty said that Dr. Ravikumar was really excited and happy with the most recent scans and really impressed. He couldn't believe how small things have gotten. Both Dr.'s are hoping that if the Oct/Nov PET scan comes back negative there will be no surgery involved. This is a good thing. I know Dr. Moriarty does not want to do surgery again if we can demolish this crap with chemo/erbitux and anything else that doesn't involve major surgery. Why? Because surgery too has its pitfalls and problems that comes along with it, and bottom line both he and Dr. Ravi agree it will not increase my chance for a cure/survival any more than other treatment options at this point.
As far as going back on chemo the plan is this. I will continue with Erbitux every two weeks for the next 3 months (erbitux is an anti-cancer drug not a chemo drug). We will watch my CEA level which Dr. Dan said has been very sensitive up until this point and we will watch that to determine wether to throw the cpt-11 (chemo) back in. Basically if it starts to go up a lot I am back on chemo and that is totally fine with me. I feel that I have regrouped and I am ready to "have at it" as it were if necessary. I am very lucky that my chemo is still effective and that my tumors have continued to respond this long.
In regards to the great news two weeks ago things have been amazing. I feel that I just walked away from a 20 car pile-up on the highway completely unscathed. I have experienced joy that I never felt before and a freedom from a constant underlying fear and panic that I have been dealing with for almost a year and a half. I am so very grateful to God. Miracles may not happen overnight but they do happen. Our prayers don't always seem to be answered the way we think they need to be but they are answered beyond our wildest dreams.
I said to Dr. Dan on Friday that when I came to see him in May of 07 "I was on death row right?" and he said "Karen, you were very, very sick. And I can honestly say without a shadow of a doubt, you are in the top 5 of all time best responders to treatment I have ever seen." I have chills right now relaying that. I said to him that that was great but also very scary.
Jesus said that all we need is the faith of a mustard seed to move mountains. I remember being a little girl and if I saw mountains I would say to myself "okay Jesus move that mountain." Of course that hasn't happened until now and its not because of my faith but of all you amazing, amazing, giving people who have been praying for me and asking others to pray for me and my family. It is because of your faith I am going to live to be old and full of wrinkles.
I cannot tell you how humbling it is and I continue to thank you all from the bottom of my heart and my family's. Please know I pray for you all as well. I know I continue to have a long road ahead but I have a road, and I get to walk on it with all those whom I love. Thank you God.
I will continue to meet with Dr. Dan every two weeks before I go have my erbitux as we watch and see how things go. You are all in my prayers and thank you just doesn't express how grateful I am that all of you and your love and prayers have gotten me so far. Jesus loves each of us and always hears us.
Love,
Karen
Wednesday, August 6, 2008
Surgery Review and More Chemo
Over the last week our surgeon (Ravikumar) has been reviewing the scans from the 28th July with our oncologist (Moriarty). Today we got a call from Ravikumar's office and spoke to the nurse there.
Essentially he's very happy with the progress and it is significant progress since January. On the down side he recommended 3 more months of chemo followed by a PET scan and another consultation. That will bring us to November.
Whilst it's great news of course that the scans are so good, I can't shake the pit in my stomach at the thoughts of 4 more rounds of chemo with no real knowledge of what lies at the end of it.
We're meeting with Moriarty in person on Friday to discuss in detail and hope to get clarification on what has been discussed. I have a lot of questions. We're going to ask for a 2nd surgical opinion from another doctor we've been researching.
Karen has been a trouper and amazingly strong throughout the day and once again I'm leaning on her instead of the other way around.
Essentially he's very happy with the progress and it is significant progress since January. On the down side he recommended 3 more months of chemo followed by a PET scan and another consultation. That will bring us to November.
Whilst it's great news of course that the scans are so good, I can't shake the pit in my stomach at the thoughts of 4 more rounds of chemo with no real knowledge of what lies at the end of it.
We're meeting with Moriarty in person on Friday to discuss in detail and hope to get clarification on what has been discussed. I have a lot of questions. We're going to ask for a 2nd surgical opinion from another doctor we've been researching.
Karen has been a trouper and amazingly strong throughout the day and once again I'm leaning on her instead of the other way around.
Thursday, July 31, 2008
CT Scan Results - Good News!!!
Karen's doing GREAT and so am I. After an emotional week we finally met with Moriarty this afternoon to review the latest CT Scans (taken this past Monday).
The news is good. Karen's tumors are smaller than they were in April and much smaller than they were in January. The largest tumor is currently 5.5 cm diameter, down from 10cms in Jan 2008.
These tumors were all ablated back in November 2007 and so we are seeing a lot of "calcification" as a result of that procedure. Calcification is exactly what it sounds like, the tumors build up deposits of calcium as a result of being necrotic (dead).
The radiologists' report revealed that the tumors do not "enhance" under contrast. My layman's understanding of this is that the stuff you drink when you're having a CT scan is absorbed by the tumors. This stuff shows up under the scan, making the tumors have higher contrast with surrounding tissue. Karen's didn't do that, therefore they didn't absorb the contrast fluid and hence this is another indication that they might be dead.
How dead they are we don't know. Moriarty said you'll never know they're fully dead but that's ok.
Lastly the scan showed that there is no NEW growth anywhere else. I'd call that a result.
The next step is to get these scans in the hands of our surgeon at LIJ. We burned some CDs and overnighted them this afternoon.
Moriarty and Ravikumar will review and confer this week and we'll have another consultation a week from tomorrow.
The last bit of good news is that Karen's new regime is for Erbitux only. No more CPT-11. Moriarty feels that this is what's having the most effect. The key is to figure out how to keep things where they are and keep improving K's situation. What a great job he and the team have done so far.
It's a lot to absorb, we're both mentally drained. Still taking it a day at a time and for today things couldn't have gone any better.
The news is good. Karen's tumors are smaller than they were in April and much smaller than they were in January. The largest tumor is currently 5.5 cm diameter, down from 10cms in Jan 2008.
These tumors were all ablated back in November 2007 and so we are seeing a lot of "calcification" as a result of that procedure. Calcification is exactly what it sounds like, the tumors build up deposits of calcium as a result of being necrotic (dead).
The radiologists' report revealed that the tumors do not "enhance" under contrast. My layman's understanding of this is that the stuff you drink when you're having a CT scan is absorbed by the tumors. This stuff shows up under the scan, making the tumors have higher contrast with surrounding tissue. Karen's didn't do that, therefore they didn't absorb the contrast fluid and hence this is another indication that they might be dead.
How dead they are we don't know. Moriarty said you'll never know they're fully dead but that's ok.
Lastly the scan showed that there is no NEW growth anywhere else. I'd call that a result.
The next step is to get these scans in the hands of our surgeon at LIJ. We burned some CDs and overnighted them this afternoon.
Moriarty and Ravikumar will review and confer this week and we'll have another consultation a week from tomorrow.
The last bit of good news is that Karen's new regime is for Erbitux only. No more CPT-11. Moriarty feels that this is what's having the most effect. The key is to figure out how to keep things where they are and keep improving K's situation. What a great job he and the team have done so far.
It's a lot to absorb, we're both mentally drained. Still taking it a day at a time and for today things couldn't have gone any better.
Monday, July 28, 2008
Scans and Waiting
Karen threw up this morning after the CT scan but other than that the scan was uneventful. It's probably a bad idea but she took home a CD with the images which we've poured over this evening.
It's hard to know what we're looking at so best not to draw too many conclusions.
We meet with Moriarty on Thursday assuming the radiologist writes up his report by then. The challenge is to keep distracted until then.
It's hard to know what we're looking at so best not to draw too many conclusions.
We meet with Moriarty on Thursday assuming the radiologist writes up his report by then. The challenge is to keep distracted until then.
Sunday, July 20, 2008
The Highs and Lows of Summer
Hello everyone. Sorry for the lack of updates. The last month and a half have been as the title suggests busy, great and stinky. I guess I will start with the practicals. I had my 8th chemo of 2008 a week or so ago on the 11th of July. I will have a ct scan done on the 28th and we will meet Dr. Moriarty on the 31st to review everything. Dr. Moriarty told me that he is hoping after this next scan that we can reassess everything and hopefully have a new plan on the books. He is implying that hopefully there will be a break from chemo but of course we won't know that until we see what the scans find. I don't really know about the Erbitux. As nasty as the acne/rash/mustache stuff is, I really think it is having a significant impact on the tumors and if I have to stay on that, that's fine. It doesn't affect me the way chemo (which is the cpt-11) does.That's where things have been rough.
The last 3 chemo sessions or so, most significantly the last one, my body has had an increasingly difficult time recovering. This also impacts my mental state of course and I found myself really battling last week staying positive and not feeling agitated, extremely tense, and a bit down. So I am really hoping for a bit of a chemo break. Even if its for a month or two. I just want to regroup.
However the chemo/erbitux combo, along with the ablation I had in November has had a great effect on my tumors and I am very, very happy, blessed and grateful for the way things are going. Things are continuing to move forward and progressing in a positive way and my medical team (almost family at this point) continue to completely stay on the ball, and battle along with me. I have the chemo nurses taking the absolute best care of me and the times I do get upset during chemo, though I try to be discreet and not cry etc. they know me by now and always stop what they are doing and sit and talk to me.
Last friday during erbitux and hydration that I desperately needed, one of the nurses named Chris, out of nowhere asked me if I was hungry, went all the way down to the cafeteria and got me chicken soup and crackers....what!? I am sure she didn't get it for free and I am still stunned that she did this. I have been going there long enough to know that that doesn't happen as a common practice. I am very, very blessed.
Also on the even happier side when I do feel good I feel great. I have been having the summer of my dreams with my kids and husband during my time I feel great and I am just loving it. We have been having adventures at the beach and going to indoor play places, and just having fun in the sun in their kiddie pool in the back. It's really what life is made of, and you don't need to have cancer to figure that out.
My kids are so fun and amazing and innocent. We were on our way to the beach and I said "guess what guys, I packed bologna sandwiches for lunch!" They gasped in happiness and Ethan said "wow that's my favorite!" and Syd said "I just loooooove bologna!" I mean they were so happy about their sandwiches! I thought that was great. I think our next adventure will be to a water park, with a hotel stay, so that should be very fun.
Also happiest of happiness my very best friend of the last 20 years of my life, Nicole, just had her second beautiful daughter Sadie. Congratulations guys we are so happy for you and I am already in love, love, love.
Thank you so much everyone for your support that comes in all ways and forms and is always, always appreciated, and means the world to us. We will continue to keep you posted and pray for you all too.
With Much Love,
Karen
The last 3 chemo sessions or so, most significantly the last one, my body has had an increasingly difficult time recovering. This also impacts my mental state of course and I found myself really battling last week staying positive and not feeling agitated, extremely tense, and a bit down. So I am really hoping for a bit of a chemo break. Even if its for a month or two. I just want to regroup.
However the chemo/erbitux combo, along with the ablation I had in November has had a great effect on my tumors and I am very, very happy, blessed and grateful for the way things are going. Things are continuing to move forward and progressing in a positive way and my medical team (almost family at this point) continue to completely stay on the ball, and battle along with me. I have the chemo nurses taking the absolute best care of me and the times I do get upset during chemo, though I try to be discreet and not cry etc. they know me by now and always stop what they are doing and sit and talk to me.
Last friday during erbitux and hydration that I desperately needed, one of the nurses named Chris, out of nowhere asked me if I was hungry, went all the way down to the cafeteria and got me chicken soup and crackers....what!? I am sure she didn't get it for free and I am still stunned that she did this. I have been going there long enough to know that that doesn't happen as a common practice. I am very, very blessed.
Also on the even happier side when I do feel good I feel great. I have been having the summer of my dreams with my kids and husband during my time I feel great and I am just loving it. We have been having adventures at the beach and going to indoor play places, and just having fun in the sun in their kiddie pool in the back. It's really what life is made of, and you don't need to have cancer to figure that out.
My kids are so fun and amazing and innocent. We were on our way to the beach and I said "guess what guys, I packed bologna sandwiches for lunch!" They gasped in happiness and Ethan said "wow that's my favorite!" and Syd said "I just loooooove bologna!" I mean they were so happy about their sandwiches! I thought that was great. I think our next adventure will be to a water park, with a hotel stay, so that should be very fun.
Also happiest of happiness my very best friend of the last 20 years of my life, Nicole, just had her second beautiful daughter Sadie. Congratulations guys we are so happy for you and I am already in love, love, love.
Thank you so much everyone for your support that comes in all ways and forms and is always, always appreciated, and means the world to us. We will continue to keep you posted and pray for you all too.
With Much Love,
Karen
Tuesday, June 24, 2008
Lowest CEA level ever...
Karen's had a terrible time this chemo round but there is good news to share. Her CEA is down to 2.9, a record low. One of our nurses (Kathy) called especially to tell us.
When Karen was first diagnosed, her CEA was 628 [LINK]. It declined on 5FU + Avastin to roughly 40. After surgery and being off chemo for a while it had gone back up to 200+. Now it's practically normal. (normal range is 0-2.5). We'll TAKE it.
This is fantastic news and signs that all the hard work Karen has put in is paying off. I am sleepless due to the wrong timezone and figured I'd be productive and share.
Thanks to all those who've emailed and sent words of encouragement. It's hard to convey without going into gory details but chemo is brutal. Brutal is not the word. And we both want to just pack it in, but random emails of encouragement and good news like this help keep things on track.
When Karen was first diagnosed, her CEA was 628 [LINK]. It declined on 5FU + Avastin to roughly 40. After surgery and being off chemo for a while it had gone back up to 200+. Now it's practically normal. (normal range is 0-2.5). We'll TAKE it.
This is fantastic news and signs that all the hard work Karen has put in is paying off. I am sleepless due to the wrong timezone and figured I'd be productive and share.
Thanks to all those who've emailed and sent words of encouragement. It's hard to convey without going into gory details but chemo is brutal. Brutal is not the word. And we both want to just pack it in, but random emails of encouragement and good news like this help keep things on track.
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