Cathy’s latest scan indicated tumor growth and the thickening of her bladder wall. Her doctor believes she does not have bladder cancer but the tumors are causing problems. This is obviously scary and frustrating, but not entirely surprising.
Cathy was on a combination of three chemotherapy medicines, Leucovorin, Fluorouracil (5FU) and Oxaliplatin. This regimen is known as “Fol Fox”. Two scans indicated the regimen stabilized Cathy’s cancer and even provided mild improvement. However, she could only take the Oxaliplatin for a limited time or there could be irreversible side effects. She had 12 rounds of it and the plan was then to continue only with the Leucovorin and Fluorouracil hoping they would maintain the stabilization and perhaps even sustain the progress. Unfortunately, they did not do this. Cathy began to experience symptoms such as ankle swelling and abdominal discomfort. She was given a scan which showed the above results.
So now another drug, Irinotecan (Camptosar or CPT-11), has been added to her regimen and with the other two drugs makes up a treatment plan called “Fol Firi”. This new drug, like the Oxali, is a heavy hitter causing fatigue, nausea and hair thinning, but hopefully it will stop the cancer and reverse its course. Giving her Oxali again is not out of the question since it was effective the first time but for now it is better to try other medications given the irreversible side effects Oxali can cause.
This setback is a reminder to us that battling cancer is a journey with many ups and downs. Cathy had several chemo sessions with less fatigue and side effects. Now she is on a new drug and is back to being knocked out for a few days during treatment. In addition, we will have to wait and see if any other side effects occur. On the bright side, knowing what is causing her symptoms gives us courage to fight them as opposed to not knowing and guessing. The doctors can also treat and relieve her symptoms more effectively. There are many options in cancer treatment and Team Cathy will exhaust them all. That is for sure!
Saturday, January 21, 2012
Monday, January 2, 2012
Happy New Year
Team Cathy would like to wish everyone a Happy New Year. We thank you for continuing to keep us in your thoughts and prayers.
As the holidays approached Cathy was able to enjoy one of her favorite activities – baking. She and Carrigan made cookies for Carrigan’s teachers. She also baked many other items that were enjoyed by family and friends.
As we reflect back on 2011 it is hard to believe how much has changed. It has been a year since Cathy first discovered the lump in her neck that was to change her life so drastically. It is a tough anniversary but she and Kyle are thankful for many things - a successful surgery and stabilization of the cancer with mild improvement; Cathy’s parents have opened their house for them to live in; receiving treatment at one of the best cancer centers in the country after moving from Florida. In addition, they have been overwhelmed with all the good wishes, advice, support, prayers, and such from so many people from so many places.
As Team Cathy looks forward to 2012 we continue to be optimistic. Cathy will continue her treatment plan and would love to be cleared to work part-time by next fall. Kyle is anxiously awaiting the hiring season for teachers later this spring, hoping to get a full time job. But mostly, Cathy and Kyle are looking forward to continuing to spend time with friends and family and trying to keep up with Carrigan!
As the holidays approached Cathy was able to enjoy one of her favorite activities – baking. She and Carrigan made cookies for Carrigan’s teachers. She also baked many other items that were enjoyed by family and friends.
As we reflect back on 2011 it is hard to believe how much has changed. It has been a year since Cathy first discovered the lump in her neck that was to change her life so drastically. It is a tough anniversary but she and Kyle are thankful for many things - a successful surgery and stabilization of the cancer with mild improvement; Cathy’s parents have opened their house for them to live in; receiving treatment at one of the best cancer centers in the country after moving from Florida. In addition, they have been overwhelmed with all the good wishes, advice, support, prayers, and such from so many people from so many places.
As Team Cathy looks forward to 2012 we continue to be optimistic. Cathy will continue her treatment plan and would love to be cleared to work part-time by next fall. Kyle is anxiously awaiting the hiring season for teachers later this spring, hoping to get a full time job. But mostly, Cathy and Kyle are looking forward to continuing to spend time with friends and family and trying to keep up with Carrigan!
Monday, November 14, 2011
Thanksgiving in NY
As expected and written about in a prior blog entry, the doctors decided that they will discontinue using Oxaliplatin due to possible permanent side effects. Cathy’s latest chemo treatment (#12) was the last one including Oxaliplatin. The plan is to use the other two drugs for a few cycles before doing another scan.
Cathy continues to handle her treatments and after effects very well. The Nevin Family was able to visit Kyle’s family in Virginia and enjoy time with them. Carrigan had a lot of fun playing with her cousins and seeing Nana in person instead of on Skype. New York is a lot closer to Virginia than Florida, so it will be easier to visit Kyle’s family. However, the move to New York includes dealing with northeast weather like the unusual October snowfall. ‘Blue house’ lost power for several days but fortunately they were able to hunker down with Cathy’s brother, Glenn, who had power. They all made the best of it, particularly Carra and cousin Bryce who loved having each other for a playmate (at least most of the time). Frank & Marcia’s perfectly timed vacation for a little R & R meant they missed all the excitement while relaxing in the sun.
Cathy and Kyle will be spending their first Thanksgiving in New York since moving down to Florida. They’re looking forward to taking Carra to the Thanksgiving Day parade to see all the big balloons.
Team Cathy is thankful for many things and especially for the support and prayers of everyone following Cathy’s progress. Warmest wishes to all for a Happy Thanksgiving.
Cathy continues to handle her treatments and after effects very well. The Nevin Family was able to visit Kyle’s family in Virginia and enjoy time with them. Carrigan had a lot of fun playing with her cousins and seeing Nana in person instead of on Skype. New York is a lot closer to Virginia than Florida, so it will be easier to visit Kyle’s family. However, the move to New York includes dealing with northeast weather like the unusual October snowfall. ‘Blue house’ lost power for several days but fortunately they were able to hunker down with Cathy’s brother, Glenn, who had power. They all made the best of it, particularly Carra and cousin Bryce who loved having each other for a playmate (at least most of the time). Frank & Marcia’s perfectly timed vacation for a little R & R meant they missed all the excitement while relaxing in the sun.
Cathy and Kyle will be spending their first Thanksgiving in New York since moving down to Florida. They’re looking forward to taking Carra to the Thanksgiving Day parade to see all the big balloons.
Team Cathy is thankful for many things and especially for the support and prayers of everyone following Cathy’s progress. Warmest wishes to all for a Happy Thanksgiving.
Friday, October 28, 2011
Scan Results: mild improvement & stability
Since we know everyone is waiting to hear about Cathy's scan, the quick report is that there was mild improvement and stability in the two areas of tumors. Cathy expects to get more details when she goes in for her next session and doctor's visit. Should know then if we'll continue the same course of treatment.
Wednesday, October 19, 2011
Full Fox
Cathy received cycle #11 of her chemo treatment yesterday.
For all you medical folk, people who have experience with chemo, or the just plain curious... Cathy is receiving three drugs that make up what is called the "Full Fox" chemotherapy treatment. This is the standard treatment for a GI tract cancer, which is where they believe the cancer began. Technically, Cathy has "adeno carcinoma of unknown primary source" but they suspect a tiny polyp in her colon as the culprit, so informally they'll say it's probably colon cancer but that is just their best guess as her cancer did not present itself as colon cancer generally would. The three drugs she is on are Leucovorin, Fluorourcil (also known as 5FU which has to be everyone's favorite name for a chemo drug) and the heavy weight Oxaliplatin.
We don't think Cathy is experiencing any major side effects from the Leucovorin. The 5FU has turned Cathy's hands a nice shade of brown, just in time for Autumn. They look as though she just raided the chocolate drawer and the evidence is all over her hands. Her skin color will return to normal when she is off of the 5FU. The Oxaliplatin is, as I said earlier, a heavy weight, the drug that is expected to stop the cancer growth immediately, a first responder to get things under control if you will. In Cathy, it has caused a strange sensation in her hands and fingers. It is a sort of a numbness, not painful, just weird.
Generally people, if they can handle Oxaliplatin at all, can only handle 6-8 cycles of it. Cathy just received her 11th cycle of it and as a reward she gets a little extra supervision by the nurses. During cycle #10, two weeks ago, the nurse hooked up the oxaliplatin and asked Cathy to not recline too far in her comfy chair because they wanted to be able to observe her from the nurses' station. This was the first time she had been given this directive. The nurse also said to not keep any secrets, if Cathy felt at all "weird" or had any unusual symptoms to let her know.
Kyle writes: if I were Cathy, I would've freaked out and assumed every unusual feeling or twinge of a muscle was some sort of bad reaction to the medicine which would then require a team of nurses and doctors and some sort of beeping machine to get my body under control. How did Cathy react? She slept. Very peacefully. The nurse would come over, ask in a whisper if Cathy was doing alright, I would nod yes, the nurse would smile and walk away. Yesterday went smoothly as well as Cathy received her 11th cycle and could recline as far as she wanted.
Cathy's doctor says she has seen some patients receive as much as 12 - 15 cycles of Oxaliplatin but that is pretty rare. After cycle #12 they will most likely take Cathy off of the Oxaliplatin because it may begin to do more harm than good. Some of that decision will be based on Cathy's next scan which is scheduled for next Monday, the 24th. That will mean Cathy will have received 6 cycles of the "Full Fox" chemo treatment since her last scan, which at the time indicated stabilization and even some progress and was completed after her fourth cycle. We are very much looking forward to this new scan.
For all you medical folk, people who have experience with chemo, or the just plain curious... Cathy is receiving three drugs that make up what is called the "Full Fox" chemotherapy treatment. This is the standard treatment for a GI tract cancer, which is where they believe the cancer began. Technically, Cathy has "adeno carcinoma of unknown primary source" but they suspect a tiny polyp in her colon as the culprit, so informally they'll say it's probably colon cancer but that is just their best guess as her cancer did not present itself as colon cancer generally would. The three drugs she is on are Leucovorin, Fluorourcil (also known as 5FU which has to be everyone's favorite name for a chemo drug) and the heavy weight Oxaliplatin.
We don't think Cathy is experiencing any major side effects from the Leucovorin. The 5FU has turned Cathy's hands a nice shade of brown, just in time for Autumn. They look as though she just raided the chocolate drawer and the evidence is all over her hands. Her skin color will return to normal when she is off of the 5FU. The Oxaliplatin is, as I said earlier, a heavy weight, the drug that is expected to stop the cancer growth immediately, a first responder to get things under control if you will. In Cathy, it has caused a strange sensation in her hands and fingers. It is a sort of a numbness, not painful, just weird.
Generally people, if they can handle Oxaliplatin at all, can only handle 6-8 cycles of it. Cathy just received her 11th cycle of it and as a reward she gets a little extra supervision by the nurses. During cycle #10, two weeks ago, the nurse hooked up the oxaliplatin and asked Cathy to not recline too far in her comfy chair because they wanted to be able to observe her from the nurses' station. This was the first time she had been given this directive. The nurse also said to not keep any secrets, if Cathy felt at all "weird" or had any unusual symptoms to let her know.
Kyle writes: if I were Cathy, I would've freaked out and assumed every unusual feeling or twinge of a muscle was some sort of bad reaction to the medicine which would then require a team of nurses and doctors and some sort of beeping machine to get my body under control. How did Cathy react? She slept. Very peacefully. The nurse would come over, ask in a whisper if Cathy was doing alright, I would nod yes, the nurse would smile and walk away. Yesterday went smoothly as well as Cathy received her 11th cycle and could recline as far as she wanted.
Cathy's doctor says she has seen some patients receive as much as 12 - 15 cycles of Oxaliplatin but that is pretty rare. After cycle #12 they will most likely take Cathy off of the Oxaliplatin because it may begin to do more harm than good. Some of that decision will be based on Cathy's next scan which is scheduled for next Monday, the 24th. That will mean Cathy will have received 6 cycles of the "Full Fox" chemo treatment since her last scan, which at the time indicated stabilization and even some progress and was completed after her fourth cycle. We are very much looking forward to this new scan.
Thursday, September 22, 2011
The New Limbo and Silver Linings
Kyle here:
At Cathy's cycle 9 visit this week it was decided to put the next scan off for a couple of cycles (each cycle is two weeks) rather than do it after her 10th as originally planned. They will probably wait until her 12th since Cathy's blood work and her handling of the chemo are both very good. The less scans the better since x-rays are not something you want to receive too often.
Cathy has also been meeting with a social worker and another mom who has cancer and also has young children. This support group was the idea of the social worker (who is awesome) who made the point that so often with cancer, support groups tend to focus on elderly patients or children. There are not a lot of resources regarding receiving cancer treatment while raising young children (especially a beautiful, active girl who has deservedly earned the nicknames, Carracane, Carranado, and Carrabiner - for her climbing). Cathy has enjoyed her discussions with someone who really understands her situation.
As hard as it is, Cathy and I are trying to be patient as we continue treatment but remain in a bit of limbo by not knowing where our cancer journey will bring us in the months and years ahead. As many times and ways that I try to cajole some kind of prognosis from Cathy's doctors I have found a recurring and very simple answer, "We don't know". Basically anything can happen and Cathy's current oncologist has said she has seen all types of situations and many different results. More often than not I hear, "Patients react differently and every case is too different to say for sure." As hard as this may be to hear because as humans we like to think we are in control - taking in info and making decisions - the truth is, we are not. But, what we are in control of, is how we react to the events that life throws at us. Although Cathy has not received any awful prognosis like "you have 3 months to live", she also has not received a prognosis of "we'll remove the tumor and after 6 chemo cycles you should be cancer free." What that leaves is this "we don't know" limbo prognosis.
Well, to me there is a bright side there. It seems much of Cathy's recovery may have to do with non-medical approaches which Cathy and I can control like diet, exercise, meditation, and so on. So, since she may not be able to rely solely on medicine, her cancer may serve as a catalyst to make many life changes that are long overdue (especially for me). We have already begun Tai Chi with her father and though we can't 'repulse the monkey' yet, we can 'part the wild horses mane' and that is a start. And who better to learn from than a master Tai Chi instructor - who doesn't charge us!
As a side note, Cathy's current oncologist is great. She smiles and laughs and thinks Cathy is doing absolutely wonderful based on her appearance, reaction to the chemo and blood work. We really like this doctor. But no, she still can not give us a definite prognosis.
Love to all, thank you for your thoughts and prayers.
At Cathy's cycle 9 visit this week it was decided to put the next scan off for a couple of cycles (each cycle is two weeks) rather than do it after her 10th as originally planned. They will probably wait until her 12th since Cathy's blood work and her handling of the chemo are both very good. The less scans the better since x-rays are not something you want to receive too often.
Cathy has also been meeting with a social worker and another mom who has cancer and also has young children. This support group was the idea of the social worker (who is awesome) who made the point that so often with cancer, support groups tend to focus on elderly patients or children. There are not a lot of resources regarding receiving cancer treatment while raising young children (especially a beautiful, active girl who has deservedly earned the nicknames, Carracane, Carranado, and Carrabiner - for her climbing). Cathy has enjoyed her discussions with someone who really understands her situation.
As hard as it is, Cathy and I are trying to be patient as we continue treatment but remain in a bit of limbo by not knowing where our cancer journey will bring us in the months and years ahead. As many times and ways that I try to cajole some kind of prognosis from Cathy's doctors I have found a recurring and very simple answer, "We don't know". Basically anything can happen and Cathy's current oncologist has said she has seen all types of situations and many different results. More often than not I hear, "Patients react differently and every case is too different to say for sure." As hard as this may be to hear because as humans we like to think we are in control - taking in info and making decisions - the truth is, we are not. But, what we are in control of, is how we react to the events that life throws at us. Although Cathy has not received any awful prognosis like "you have 3 months to live", she also has not received a prognosis of "we'll remove the tumor and after 6 chemo cycles you should be cancer free." What that leaves is this "we don't know" limbo prognosis.
Well, to me there is a bright side there. It seems much of Cathy's recovery may have to do with non-medical approaches which Cathy and I can control like diet, exercise, meditation, and so on. So, since she may not be able to rely solely on medicine, her cancer may serve as a catalyst to make many life changes that are long overdue (especially for me). We have already begun Tai Chi with her father and though we can't 'repulse the monkey' yet, we can 'part the wild horses mane' and that is a start. And who better to learn from than a master Tai Chi instructor - who doesn't charge us!
As a side note, Cathy's current oncologist is great. She smiles and laughs and thinks Cathy is doing absolutely wonderful based on her appearance, reaction to the chemo and blood work. We really like this doctor. But no, she still can not give us a definite prognosis.
Love to all, thank you for your thoughts and prayers.
Saturday, August 27, 2011
Genetic and Weather Forecasting
When the oncologist at MSK recommended at her first visit that Cathy should see the geneticist, we were speculating the reasons for this suggestion. In the area of cancer research, it appears that genetics is the latest forefront and some newer treatments have come about due to this research.
Cathy had a visit with the geneticist and recently got the results from some tests they did. They tested for two genetic mutations: Lynch Disease and MYH Associated Polyposis (MAP). The tests came back negative for both which we consider good news. There would have been more serious implications for Carrigan if they found a definite genetic mutation. Although this doesn’t answer a lot of questions regarding the origin of Cathy’s cancer, it may help researchers as they work on unraveling cancer’s mystery.
Cathy’s latest chemo session this week went well. Although the oncologist said that sometimes they see more side effects with treatment #7, fortunately Cathy didn’t fall into that group.
In the meantime, athough Cathy and Kyle moved away from Florida, it looks like they didn’t get away from hurricanes. It sounds like NY is going to get hit by Hurricane Irene while she stayed away from Florida. We are preparing for high winds and heavy rain but hoping it won’t be as bad as they’re forecasting.
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