There will be several posts that represent updates she sent family and friends via email. It allows us a glimpse of heart struggle and her relentless search for answers.
Thanks Diane... xo
Disclaimer
This is a true story. This represents the writer’s opinion only and should not be used as a medical guide. The writer does not claim that medical information contained in this story is completely accurate, current or error free. The writer is not responsible for direct, indirect, incidental, consequential or any other damages arising out of or in connection with the information provided in this story. Please consult your physician for all medical procedures, advice, plan of actions and tests.
Friday, June 16, 2006 9:46 AM
Well I am on the final phase now of treatment. This next phase of treatment is a two parter.
I started Herceptin on Wednesday (June 14th). I will be doing Herceptin every three weeks for a year. The Herceptin hit me hard. I had a fever of 100.5 from 5PM until around 2PM when I finally fell asleep. Yesterday, I felt weak all day. I still went for a walk and I felt better after the walk. Funny, this is day two and I still feel dizzy. I hope that passes. Herceptin is given intravenously though my port. The first dose was given slowly as the first dose usually has the strongest effect on you. The first dose takes around 90 minutes. The second dose will take an hour and then all subsequent doses if well tolerated will take 30 minutes. I will have to go to the hospital for every transfusion. Herceptin can be given weekly or every three weeks. If weekly the dosage is a Loading dose 4Mg/Kg IV (of body weight) followed by weekly dose of 2Mg/Kg. The 3 Week schedule is: Loading dose 8Mg/Kg IV followed by a dose of 6Mg/Kg every 3 weeks.
I was going to start a clinical trial designed for pre menopausal women to study Tamoxifen alone, Tamoxifen plus Triptorelin (chemical ovarian suppression) or Exemestane (aromasin) plus Triptorelin; however treatment has left me with chemo induced menopause. This is temporary as I’m still having my periods (sorry gentlemen if this is too much information). I will have my estrogen tested in four weeks to see if I am still in menopause and we will go from there. In the mean time I am going to take Tamoxifen alone. I have a father’s day party planned for Saturday with 11 people coming to my house so I think I will start Tamoxifen on Sunday. I am nervous about the side effects. There is a really long list. If I stay menopausal, then there are lots of options for me for the next five years. If I am still pre menopausal then the standard treatment is only Tamoxifen, so that is why I want to go on the clinical trial. More studies and more options are needed for women under 50. This is a long road and I will not feel cured and normal again until after I pass this five year mark. I hate that I have to take medication for five years. I have never liked taking pills.
Hey, my hair and eyelashes are really coming back now. I now have enough hair to go without my scarves and hats. Its really really short but hey, I don’t care. I gave up the false eyelashes, my lashes are back now enough that a little mascaras makes them look almost as long as they used to. My hairs not blond any more, it’s coming back much darker and grayer. Hey, its hair. I’ll color it back when it gets long enough. I tell people that I have an American idol hair cut. I went bald for Chris and now that it’s coming back gray, it’s my Taylor Hicks look.
Funny, a friend of mine asked me last night why I still have to have treatments, he assumed I was cured. I would love to think that by the grace of the Lord that I am cured and that all the Cancer cells are gone. That I poisoned them with chemo and burned them with radiation and that this next phase is just insurance; however most secondary reoccurrences happen in the first 18-24 months. In studies, Tamoxifen has shown to reduce reoccurrences by up to 50%. Herceptin is given only to patients who are HER2+. HER2+ is a form of aggressive Cancer, where the Cancer proliferates faster than usual. Herceptin binds to HER2+ Cancer cells and blocks them from dividing and growing. Herceptin also has a great success rate. I feel great and people tell me that I look healthy. So, I am going to live life like I am healthy. I do not want to live in fear of a reoccurrence.
Reoccurrences happen in two ways, another primary Cancer or a secondary Cancer. Another primary is surgically curable. It is treated very much like the first time, however if you get another primary in the same breast, you can not radiate it twice so a mastectomy is most often required if you had a lumpectomy the first time. A secondary Cancer is Breast Cancer that has spread to a second organ, like your lungs, liver, bones etc. There is no cure for this and it can not be surgically removed. Some people live up to ten years with secondary Breast Cancers. Of course when you are faced with a life threatening disease you do tend to look at life different. Many things change, the way you eat for sure and the way you take care of your body. I hope I can stick to a healthier life style and that this beast does NOT come back.
Scheduled to start back to work the week after next, so I’ll see (hypothetically speaking) some of you then. Thank you all again for your emails, cards, prayers, concerns and thoughts; they have meant the world to me during this treatment phase.
Wednesday, June 21, 2006 9:53 AM
I went to a lecture last night from a local oncologist who was asked to speak at our Breast Cancer support group on anti-estrogen therapy for Breast Cancer. He asked if there were any questions, so of course I said “Yes, I am triple positive and have recently read that the combination of ER+ and HER2+ is creating Tamoxifen resistance in those patients. I have also heard that sometimes Tamoxifen actually acts like an activator instead of an antagonist. My ONC assures me these are only animal/lab studies and not done on humans. Is this correct?”
His lecture was fascinating. He covered everyone’s questions in his explanation on Tamoxifen and the newer Aromatase Inhibitors (AI). He compared the two and explained why AIs are not effective for pre menopausal women. As, I am pre menopausal there is no standard treatment other than Tamoxifen. The reason AIs will not work for pre menopausal women is that the ovaries and the pituitary gland have feed back to each other so when an AI tries to shut the estrogen down the pituitary gland it says “Hey, I need more estrogen” and the ovaries respond and create more. This doesn’t happen when the ovaries are shut down either chemically or by menopause because there is no one home to answer the pituitary gland when it demands more so it basically shuts up. AIs are not strong enough to shut down all the estrogen that the ovaries produce. They work on the other systems that create estrogen such as your skin and adrenal glands.
He then went into what is becoming a newly discovered problem and that is the cross talk between the estrogen receptor and the HER2 receptor. He confirmed that these are only animal/lab studies and not done on humans; however what they have found is that when you add the biologic therapy of Herceptin that the Herceptin blocks the cross talk because it binds to the HER2 protein and blocks it from dividing and therefore makes the Tamoxifen effective again. So while I am on Herceptin, I will not have to worry about Tamoxifen activating residual Cancer cells. He also said that the more ER+ you are the more effective hormonal therapy is. I am 16% ER+, so my chances of not getting a reoccurrence and DFS (Disease Free Survival) are improved.
I start Tamoxifen today, and today I feel good about the drug.
Had my second Herceptin treatment this week and I really had no ill effects. Mom and dad took me to treatment this time. Dave had always taken me but I didn’t want him to burn up all his vacation. I wanted Mom and dad to go so they would understand and not feel as scared about my prognosis. Mom said it was a little like Deja Vu as she frequently took my sister Gale to treatment. I enjoyed going with them and for the next year they insist on driving me to my Herceptin infusion. I am glad for the company.
I take my Tamoxifen every night and so far I have no negative side effects from that either. My hair is slowly coming back. It is trying to be really curly. I am really spoiled by not having to fix my hair. I am still in chemopause, so my endocrine therapy will remain the same. I told my Oncologist that as we are planning a trip to
I took all the cards and letters that I received over the last 7 months off the fridge in preparation of my return to work this month. I want to believe that I am though this nightmare. I have to believe in my heart that I am cancer free. I kept a brave face and good spirits though out the last seven months. I cannot live me life waiting for this monster to come back. I will continue to eat a better diet with at least five servings of fruits and vegetables. I will avoid high fat foods, white flours, processed foods and sugars as much as possible. I will exercise at least 30 minutes per day. I will continue to cherish the fact that I have a wonderful supportive and loving family. The next five years will be the true test.
Well, Dave and I are getting ready to leave for our twenty wedding anniversary trip to French Polynesian. We will visit Tahiti, Moorea,
I had my first hair cut this year on November 4th. Never thought it would take 8 months before I would need a trim. I want to enjoy the curls while I have them. I have heard that you only get curls for the first year and then your hair goes back to the way it was before chemo.
My Final Thoughts
Tell you what – I’ll save my final thoughts and give them to you when I’m…….say………64? Oh what the heck, let’s make it 84!
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