Update 5-29
What are your plans for the summer? A trip to the amusement park? Some how paying good money to scare yourself silly on the rides and getting that icky tummy feeling from eating too much junk food is a ritual of summer. I am a fan of the amusement park, especially the roller coaster. You jump on, and then when the ride starts you think… did I really want to do this? What was I thinking? Well, this summer I may be thinking the same thoughts and having some upset tummy episodes, but my adventure will be through the miracle of chemotherapy.
I went to the doctor today for the final tests, EKG, MUGA, blood, urine, blood pressure etc and I am fit for Chemo.
Next Thursday at 10 AM my adventure begins.
I was accepted into the clinical trial I mentioned earlier. I just barely fit the requirements with the micro metastasis. The trial is a triple blind trial, which is good in that I am going to be getting at least the standard treatment currently used. This trial is studying the implementation of Avastin (brand name for Bevacizumab) in the addition to standard chemotherapy (Doxorubicin and cyclophosphamide; abbreviated to AC) for breast cancer. This drug has been all ready proven in colo-rectal cancer. The role of Avastin in fighting cancer is that it binds or starves cancer cells so that they cannot grow.
The other drugs involved will be:
Doxorubicin ~ this is an anti-tumor antibiotic and blocks cell growth by interfering with the DNA, the genetic material in the cancer cells.
Cyclophosphamide~ this is an Alkylator or DNA-Altering drug that changes the genetic material in cancer cells to keep them from reproducing.
Paclitaxel~ this is a plant alkaloid that keeps cancer cells from dividing or from making the proteins they need.
Neulasta~ This is a shot, given the day after chemo to help the body produce more white cells.
Anti-nausea drugs~ The doctor gave me three different prescriptions for this! They are Zofran, Emend tripack and compazine.
The term of treatment will be :
Treatment once every two weeks for four cycles.
Treatment once a week for 12 cycles.
This is a total of about 5 months of chemo.
However, at the end of cycle 8, the trial becomes unblinded . At that point there is the possibility that I may be part of a group that requires and additional 10 cycles of just bevacizumab.
After the Chemotherapy is complete, radiation and hormone therapy will be administered. More about that later though. One step at a time!
Thank you so very much to the cancer survivors who are so inspirational for me. Your stories of courage, faith and humor give me strength to look on this as an adventure.
I have the best of faith in my doctors and the medical staff who I have been working with. Each and every person has made me feel so very special and pampered. I want to send a special thanks to those of you who work in the health care service field.
Love you all,
Lynn
Thursday, May 29, 2008
May 16, 2008
Update 5-19
Well it looks like it is going to be a long, hot summer; I think I will cut my hair very short! It is so much cooler and easier to maintain that way!
Translation:
I will be experiencing the chemotherapy journey this summer.
Being told that chemotherapy is the best next course for me to take was a shock. I was firmly convinced in my mind that I would be going the radiation route, I guess that is the optimist in me.
The reason for the chemotherapy recommendation is based on the pathology report. The overview of the report is:
Tumor size 2.2 cm Chemo is recommended for any tumor over 1.5 cm
Auxiliary Node had a mico-metassis , there is a chance the cancer has spread elsewhere
Hormone receptors Estrogen positive, Progesterone positive
Her2/neu ratio is 1.6, negative on FISH scale
Now I understand just some of the above, I get lost at the Her2 thing, but I know many of you know more than I do and will find the above stats fascinating!
That aside, I know that I will do well. John and I have been so very impressed with each doctor that will be working with us. What is really nice is that they work together well as a team, the fact that they communicate with each other makes it so much easier for us. The staff at Iowa Methodist and the John Stoddard Cancer Center have been so awesome, they even make a person like myself who gets the willies just thinking of medical procedures comfortable!
Chemotherapy will probably begin sometime in June, as I know more details I will let you know. There is a clinical trial I may qualify for and the timing is somewhat dependent upon that. I will also be having a port inserted to make the administration of the drugs easier. Again, I will do what I have to do, but if there is an easier way I am all for it!
Following this page I have several links for the doctors I am working with, the John Stoddard center other assorted links.
Thanks again for all of your support and prayers,
Lynn
On Friday May 16, 2008, John and I met with both a radiation oncologist and a hematology oncologist.
First up that day was the radiation oncologist. He is:
Dr. John Triantafyllos, MD (they call him Dr. T)
Here are links regarding Dr. T and the Radiation department at John Stoddard
http://www.iowahealth.org/body.cfm?xyzpdqabc=0&id=174&action=detailPhys&ref=3342
http://www.johnstoddardcancer.org/body.cfm?id=222
Next, we met with the chemotherapy oncologist. She is:
Dr. Ann Stroh, DO (pronounced straw)
Here are her links:
http://www.iowahealth.org/body.cfm?xyzpdqabc=0&id=174&action=detailPhys&ref=3228
Chemotherapy link
http://www.johnstoddardcancer.org/body.cfm?id=220
Possible clinical trial
http://ecog.dfci.harvard.edu/general/intro.html
the specific trial is
E5103
A Double-Blind Phase III Trial of Doxorubicin and Cyclophosphamide followed by Paclitaxel with Bevacizumab or Placebo in Patients with Lymph Node Positive and High Risk Lymph Node Negative Breast Cancer Activation Date: 02-nov-2007
Well it looks like it is going to be a long, hot summer; I think I will cut my hair very short! It is so much cooler and easier to maintain that way!
Translation:
I will be experiencing the chemotherapy journey this summer.
Being told that chemotherapy is the best next course for me to take was a shock. I was firmly convinced in my mind that I would be going the radiation route, I guess that is the optimist in me.
The reason for the chemotherapy recommendation is based on the pathology report. The overview of the report is:
Tumor size 2.2 cm Chemo is recommended for any tumor over 1.5 cm
Auxiliary Node had a mico-metassis , there is a chance the cancer has spread elsewhere
Hormone receptors Estrogen positive, Progesterone positive
Her2/neu ratio is 1.6, negative on FISH scale
Now I understand just some of the above, I get lost at the Her2 thing, but I know many of you know more than I do and will find the above stats fascinating!
That aside, I know that I will do well. John and I have been so very impressed with each doctor that will be working with us. What is really nice is that they work together well as a team, the fact that they communicate with each other makes it so much easier for us. The staff at Iowa Methodist and the John Stoddard Cancer Center have been so awesome, they even make a person like myself who gets the willies just thinking of medical procedures comfortable!
Chemotherapy will probably begin sometime in June, as I know more details I will let you know. There is a clinical trial I may qualify for and the timing is somewhat dependent upon that. I will also be having a port inserted to make the administration of the drugs easier. Again, I will do what I have to do, but if there is an easier way I am all for it!
Following this page I have several links for the doctors I am working with, the John Stoddard center other assorted links.
Thanks again for all of your support and prayers,
Lynn
On Friday May 16, 2008, John and I met with both a radiation oncologist and a hematology oncologist.
First up that day was the radiation oncologist. He is:
Dr. John Triantafyllos, MD (they call him Dr. T)
Here are links regarding Dr. T and the Radiation department at John Stoddard
http://www.iowahealth.org/body.cfm?xyzpdqabc=0&id=174&action=detailPhys&ref=3342
http://www.johnstoddardcancer.org/body.cfm?id=222
Next, we met with the chemotherapy oncologist. She is:
Dr. Ann Stroh, DO (pronounced straw)
Here are her links:
http://www.iowahealth.org/body.cfm?xyzpdqabc=0&id=174&action=detailPhys&ref=3228
Chemotherapy link
http://www.johnstoddardcancer.org/body.cfm?id=220
Possible clinical trial
http://ecog.dfci.harvard.edu/general/intro.html
the specific trial is
E5103
A Double-Blind Phase III Trial of Doxorubicin and Cyclophosphamide followed by Paclitaxel with Bevacizumab or Placebo in Patients with Lymph Node Positive and High Risk Lymph Node Negative Breast Cancer Activation Date: 02-nov-2007
May 8, 2008
Update May 8, 2008
Dear Friends,
If at first you don’t succeed, try again! It worked for me. The second surgery was successful and the surgeon was able to establish clear margins around the crap. HooRay!
I must say that my experience with Iowa Methodist was just as pleasant this week as it was last. This is the link to Iowa Methodist if you want to check out the staff; http://www.johnstoddardcancer.org/body.cfm?id=268 my doctor is Dr. Kollmorgan, you can read about him under physicians. Edra Frouts is the Breast Cancer Care Coordinator and she is under Care Coordinators.
The surgery was done Tuesday at 7 AM. Since they did not have to remove any lymph nodes, it was done under what they call a local-mac. I asked what mac was, but now I forgot! Basically I was asleep, but not as deep as general puts you under, so it was quicker in and out.
I have a follow up appointment with my surgeon next week. At that time, he will refer me to an oncologist who will determine the balance of the treatment. Since it was breast conservation surgery, radiation is almost a given.
Dr. Kollmorgan said that I might qualify for a clinical study called TAILORx, it has to do with Oncotype test. From what I understand, it is a gene study that helps determine if chemotherapy is beneficial for borderline candidates. Here are some links I found about the study;
http://www.genomichealth.com/oncotype/tailorx/default.aspx
http://www.breastcancer.org/treatment/chemotherapy/new_research/20060126.jsp
http://ecog.dfci.harvard.edu/general/gendocs/tailorx_oncodxfact.pdf
I know some of my friends like to research as much as I do. After all knowledge is power.
So far I am doing well, resting a lot as the pain meds do make me so sleepy!
Thanks again for your prayers and good wishes.
Dear Friends,
If at first you don’t succeed, try again! It worked for me. The second surgery was successful and the surgeon was able to establish clear margins around the crap. HooRay!
I must say that my experience with Iowa Methodist was just as pleasant this week as it was last. This is the link to Iowa Methodist if you want to check out the staff; http://www.johnstoddardcancer.org/body.cfm?id=268 my doctor is Dr. Kollmorgan, you can read about him under physicians. Edra Frouts is the Breast Cancer Care Coordinator and she is under Care Coordinators.
The surgery was done Tuesday at 7 AM. Since they did not have to remove any lymph nodes, it was done under what they call a local-mac. I asked what mac was, but now I forgot! Basically I was asleep, but not as deep as general puts you under, so it was quicker in and out.
I have a follow up appointment with my surgeon next week. At that time, he will refer me to an oncologist who will determine the balance of the treatment. Since it was breast conservation surgery, radiation is almost a given.
Dr. Kollmorgan said that I might qualify for a clinical study called TAILORx, it has to do with Oncotype test. From what I understand, it is a gene study that helps determine if chemotherapy is beneficial for borderline candidates. Here are some links I found about the study;
http://www.genomichealth.com/oncotype/tailorx/default.aspx
http://www.breastcancer.org/treatment/chemotherapy/new_research/20060126.jsp
http://ecog.dfci.harvard.edu/general/gendocs/tailorx_oncodxfact.pdf
I know some of my friends like to research as much as I do. After all knowledge is power.
So far I am doing well, resting a lot as the pain meds do make me so sleepy!
Thanks again for your prayers and good wishes.
My first email to friends April 24
I just want to update all of my friends on how I am doing.
I sincerely thank each and everyone one of you for your continued prayers and thoughts You have enveloped me with such love and positive thoughts that I am at peace with my ‘crap’ and have complete confidence that I am on the path to beat it.
My surgery will be next week on Tuesday the 29th, I don’t have a time yet and will not know until the day before. It will be an outpatient procedure, so I should be home that night. We will not now the results of the lymph node biopsies for several days after that.
Just some thoughts that have been rambling through my head that I thought I would share with you. They are my thoughts and not necessarily, those of everyone going through what I am.
First, most of you all ready know that I refuse to call this crap what the doctor’s call it, cancer. One definition of cancer is an out of control evil that takes over all that is good. I refuse to allow that to happen to me, crap I can handle and can fight. Therefore, I have come to examine the use of the word cancer in our language. What brought this to the forefront for me is that I was listening to one talk radio station and this host was referring to one of the terrorist leaders as being a cancer on society, going on about how he was out of control and would destroy every thing. Think about it.
Second, I have had several people say that they did not know what to say to me when they learned of my diagnosis. You know, I never really knew what to say before either. One thing I know I personally do not care for is “I’m sorry”. The person, who says that, had absolutely nothing to do with my getting cancer so what do they have to be sorry for? So maybe it would be better to say “I am sorry to hear that.” Or maybe you could say “ Do you like your doctor?”, Plus there is always “ You will be in my thoughts and prayers”. Then go on to celebrate what is good going on. Again, these are just my suggestions.
Third, I have so appreciated hearing from survivors and hearing their stories. These ladies give me hope, courage and faith. If you know of a survivor, you can relay their story to the newly diagnosed person. I was told by a couple of people to call this particular lady, who I had met in the past, but how do you start that call? I felt too awkward to call, so ask the newly diagnosed person if you can give their phone number to the survivor you want them to talk to . I was talking to my Breast Cancer Nurse/Coordinator about how helpful talking to survivors has been for me. She mentioned that this cancer is unlike others in that the women really bond together and support each other. It gives more meaning to the theme I see in the Breast Cancer Site regarding, Sisters, Mothers, Daughters. I always felt at a small loss not having a sister to grow up with or a daughter to raise, only to find out I had sisters just waiting to meet me at the time I needed them most.
Fourth, Ladies, Please get your mammograms. I had a small change in my breast but after researching extensively on the net, it didn’t look anything like any of the pictures I saw, or the changes that are associated with cancer. Frankly it looked like scar tissue had formed and I get those all over my body as I have aged. The surgical oncologist even said that it would have been easy to miss. I am fortunate that it was caught, I have heard of other’s who were not as fortunate.
Fifth, Cancer in and of itself is not physically painful. Weird isn’t it? I feel just as well as I did a month ago. Maybe that is why it can be so easily over looked.
In summary, it has always been my belief that everything happens for a specific reason. Early in my life, it took me a long time to figure that out and then to learn what the reason is. Several years ago, I figured it out. I need to share what happens to me in my life with others to help give them perspective if they themselves find they are facing some of the same challenges I have, or maybe they have a friend they can help. Much time is wasted re-inventing the wheel and that time costs us personally much in the terms of energy, hope and faith.
Thanks once again for your support.
Please feel free to share this information as you see fit. Anyone is free to email me or call me if you just want to chat or share your thoughts on my missive!
Love you all!
Lynn
I sincerely thank each and everyone one of you for your continued prayers and thoughts You have enveloped me with such love and positive thoughts that I am at peace with my ‘crap’ and have complete confidence that I am on the path to beat it.
My surgery will be next week on Tuesday the 29th, I don’t have a time yet and will not know until the day before. It will be an outpatient procedure, so I should be home that night. We will not now the results of the lymph node biopsies for several days after that.
Just some thoughts that have been rambling through my head that I thought I would share with you. They are my thoughts and not necessarily, those of everyone going through what I am.
First, most of you all ready know that I refuse to call this crap what the doctor’s call it, cancer. One definition of cancer is an out of control evil that takes over all that is good. I refuse to allow that to happen to me, crap I can handle and can fight. Therefore, I have come to examine the use of the word cancer in our language. What brought this to the forefront for me is that I was listening to one talk radio station and this host was referring to one of the terrorist leaders as being a cancer on society, going on about how he was out of control and would destroy every thing. Think about it.
Second, I have had several people say that they did not know what to say to me when they learned of my diagnosis. You know, I never really knew what to say before either. One thing I know I personally do not care for is “I’m sorry”. The person, who says that, had absolutely nothing to do with my getting cancer so what do they have to be sorry for? So maybe it would be better to say “I am sorry to hear that.” Or maybe you could say “ Do you like your doctor?”, Plus there is always “ You will be in my thoughts and prayers”. Then go on to celebrate what is good going on. Again, these are just my suggestions.
Third, I have so appreciated hearing from survivors and hearing their stories. These ladies give me hope, courage and faith. If you know of a survivor, you can relay their story to the newly diagnosed person. I was told by a couple of people to call this particular lady, who I had met in the past, but how do you start that call? I felt too awkward to call, so ask the newly diagnosed person if you can give their phone number to the survivor you want them to talk to . I was talking to my Breast Cancer Nurse/Coordinator about how helpful talking to survivors has been for me. She mentioned that this cancer is unlike others in that the women really bond together and support each other. It gives more meaning to the theme I see in the Breast Cancer Site regarding, Sisters, Mothers, Daughters. I always felt at a small loss not having a sister to grow up with or a daughter to raise, only to find out I had sisters just waiting to meet me at the time I needed them most.
Fourth, Ladies, Please get your mammograms. I had a small change in my breast but after researching extensively on the net, it didn’t look anything like any of the pictures I saw, or the changes that are associated with cancer. Frankly it looked like scar tissue had formed and I get those all over my body as I have aged. The surgical oncologist even said that it would have been easy to miss. I am fortunate that it was caught, I have heard of other’s who were not as fortunate.
Fifth, Cancer in and of itself is not physically painful. Weird isn’t it? I feel just as well as I did a month ago. Maybe that is why it can be so easily over looked.
In summary, it has always been my belief that everything happens for a specific reason. Early in my life, it took me a long time to figure that out and then to learn what the reason is. Several years ago, I figured it out. I need to share what happens to me in my life with others to help give them perspective if they themselves find they are facing some of the same challenges I have, or maybe they have a friend they can help. Much time is wasted re-inventing the wheel and that time costs us personally much in the terms of energy, hope and faith.
Thanks once again for your support.
Please feel free to share this information as you see fit. Anyone is free to email me or call me if you just want to chat or share your thoughts on my missive!
Love you all!
Lynn
Winlynn's Marvelous Adventure!
Hi, my name is Lynn and I have Breast Cancer (that kind of sounds like a 12 step meeting!).
I was recently diagnosed with breast cancer and I have been keeping friends and family up to date with emails. Well one friend said "Lynn, you should start a blog!" (okay that reminds me of the Beverly Hillbillies!) so here I am.
I welcome you to read my thoughts and share yours with me. If you have stories to share that would be wonderful, the support I have had from others is just awesome.
So this is the end of my brief introduction... what follows are the emails I have previously sent to friends and family.
I was recently diagnosed with breast cancer and I have been keeping friends and family up to date with emails. Well one friend said "Lynn, you should start a blog!" (okay that reminds me of the Beverly Hillbillies!) so here I am.
I welcome you to read my thoughts and share yours with me. If you have stories to share that would be wonderful, the support I have had from others is just awesome.
So this is the end of my brief introduction... what follows are the emails I have previously sent to friends and family.
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