In the past week, I've seen the breast surgeon, the medical oncologist and the radiation oncologist. OK, enough already! I'm ready to be DONE with doctors for a while. Everyone is happy with my progress. My medical oncologist prescribed Femara, which I will likely take for the next five years. And my radiation oncologist was complimentary of how I made my decision to not do chemo (not that he necessarily agreed with the decision, just that he thought I made a very informed decision).
I will have a baseline bone density scan after Labor Day as Femara can cause osteoporosis. I am taking calcium and vitamin D supplements, my vitamin D level was 45 and he likes it to be at least 50. I am close and will happily work to get over that level. Sunshine exposure helps! He did labwork (Metabolic Panel and tumor marker test) which I've not yet received the results...need to call about that tomorrow morning. And I go back to him towards the end of September, assuming I am tolerating the Femara well.
Speaking of Femara, it's a very expensive drug at about $400 a month before insurance coverage. With my plan, it would be over $200 for a 90 day supply. But Novartis must be feeling some competitive heat from a competing drug, Arimidex, which just went generic. So they have kindly provided a coupon that brings the monthly copay down to $10 and will cover up to $800 of my remaining copays for a 12-month period. Pretty sweet!
I am ready to get on with my life!
Thursday, August 19, 2010
Monday, August 9, 2010
No intensive chemo planned
After much soul-searching, studying and talking it out with my family, I have decided to bypass chemotherapy and focus on the positives. I will try a more "natural" approach to preventing recurrences, along with some help from bisphosphonates (the drugs used to prevent osteoporosis), aspirin, the metformin I'm already taking, consistent exercise, lower fat diet, and any other less toxic ideas that show promise. If my oncologist agrees, I will also try anti-hormone therapy. It's not likely to make a difference due to my weak hormone receptors; but if I can tolerate it without side effects, there is nothing to lose.
Today is the first day of the rest of my life.
Today is the first day of the rest of my life.
Saturday, August 7, 2010
Xeloda is off the table for me
I found what I was looking for. This drug is not effective for triple negative breast cancer. I won't be taking it.
http://www.breastcancer.org/symptoms/types/ask_expert/2008_07/question_02.jsp
http://www.breastcancer.org/symptoms/types/ask_expert/2008_07/question_02.jsp
Friday, August 6, 2010
Visit to KU Med Oncologist and decisions to mull over this weekend
Man, that was an adventure! I had a 10:00 appointment for which they asked that I show up 30 minutes ahead, so we were there at 9:30. I filled out the necessary paperwork and then waited...and waited. We were beckoned at about 10:40 or so, where I was weighed and measured, we went to an exam room for the requisite BP and temp taking, then we waited...and waited...and waited! I would say about 11:45 a doctor finally came in and we talked for a few minutes, she did an exam of my now cancer-free breast, checked the armpits for nodes, checked the other breast, etc.
During our discussion, she tried to tell me that diabetics doing chemo had really good outcomes, which I immediately challenged with references to MD Anderson's statistics. She was young and didn't have much to say at that point; and bottom line, she couldn't provide anything in the way of proof. Rick said I might have been a bit too direct (well, probably!).
Then Dr. Khan came in and really just asked a few questions about my diabetes and how well it was controlled, did I have any neuropathy or other side effects, etc. Then I got dressed and we went off to a consultation room where he reviewed the flow chart for treating breast cancer that I have already seen. He, of course, recommended chemo and then possibly anti-hormone therapy, depending on the status of my Estrogen Receptors, which will be tested in a path lab again. I guess we're going with the best 3 out of 4 here. He did say the Oncotype score was meaningless (which was what I suspected), and he gave me his prediction of my chance for distant recurrence - 30% within 10 years. Well, that's better than the Onco score which was 34% so I gained a few odds in my favor...LOL!
We discussed the side effects of the two most popular chemo protocols - with one (TC) being the "up to" 70% risk of neuropathy and the other (AC) being a 5 times higher risk for cardiomyopathy. He suggested we think about a first generation regime (CMF) that, while not as effective as the newer protocols, has as its main side effects a risk of leukemia and long-term loss of cognitive function (also known as chemo brain). And last but not least, we discussed Xeloda, a "metronomic" chemo administered orally that hasn't proven itself as all that effective and has for its main side effect something called hand - foot syndrome. Here's a little info on that nasty SE that occurs in up to 60% of the folks in the clinical trials:
Also called hand-foot syndrome or hand-to-foot syndrome, Palmar-Plantar Erythrodysesthesia is a side effect, which can occur with several types of chemotherapy or biologic therapy drugs used to treat cancer. For example, Capecitabine (Xeloda®), 5-Flurouracil (5FU), continuous-infusion doxorubicin, doxorubicin liposomal (Doxil®), and high-dose Interleukin-2 can cause this skin reaction for some patients. Following administration of chemotherapy, small amounts of drug leak out of very small blood vessels called capillaries in the palms of the hands and soles of the feet. Exposure of your hands and feet to heat as well as friction on your palms and soles increases the amount of drug in the capillaries and increases the amount of drug leakage. This leakage of drug results in redness, tenderness, and possibly peeling of the palms and soles. The redness, also known as palmar-plantar erythema, looks like sunburn. The areas affected can become dry and peel, with numbness or tingling developing. Hand-foot syndrome can be uncomfortable and can interfere with your ability to carry out normal activities.
None of this seems worth the risk as statistically, 100% of women with a Stage 1 breast cancer are live and kicking within five years. Yup, that's what the Surveillance, Epidemiology, and End Results (SEER) Program of the National Institute of Health says. Here's a link to this chart in case you're curious:
http://seer.cancer.gov/publications/survival/surv_breast.pdf
This program involves more than 250,000 cases of which more than 31,000 are the same size as my tumor - localized and 17 mm or 1.7 cm.
Even if you consider my likely ER negative status, for which they had only 3 years of data (apparently they only started checking these hormone receptors in the very late 1980's), my 3 year survivability is more than 95%.
Unfortunately, this data is not as "modern" as we might like it to be, with statistics that end with 2001.
So, what are the potential benefits of doing chemo, assuming I could magically escape each and every long-term side effect?
Here's a link to the math calculator; remember when I said I just wanted this to be a math problem? I've learned a great deal in the last couple of months, and it's just not that easy!
http://www.lifemath.net/cancer/breastcancer/therapy/index.php
I enter my age, size of tumor, grade and type of tumor, and hormone receptor status (using negatives for now).
The result is that there is a 22.6% death rate from cancer within 15 years. Having no chemo treatment shortens my 24 year life expectancy to 20 years. If I proceed with the CMF chemo protocol, it buys back 229 days. Hmmm.... and that doesn't count any impact from the chemo, like leukemia. I would go through chemo hell for 229 days...doesn't sound like much of a deal to me.
The picture improves if by some miracle my hormone receptors are declared positive. With hormone therapy and no chemo, the 15 year cancer death rate is 12.2%. Of course, now we're talking about osteoporosis as a side effect, but that can be treated.
I haven't mentioned much about Xeloda because I haven't yet found the clinical trial data that discusses its success rate. I know it's being used by women who are Stage IV as they tend to cycle through various lower dose chemo drugs hoping to keep their metastises at bay. That would not be applicable in my situation because....
There is no way to prove or disprove whether or not a single cancer cell made it past the Sentinel Node. We know the nodes were clear. We know that cancer cells typically go to the Sentinel Node first, before entering the rest of the body. We know it was a very, very angry, fast-growing tumor that couldn't have been there very long or it would have been ginormous with its 90% proliferation rate.
Here's where we are leaning:
If the new pathology report indicates positive hormone receptors, even weakly, then we will likely want to do something about anti-hormone therapy. There is some likelihood that it might not be that effective under those circumstances. We would probably take a "natural" approach to reducing my hormone levels, which can be checked via bloodwork to attain the same level that the anti-hormone drug would achieve. If the pathology report surprises us with "positive" news (an unlikely scenario but one can hope), I will take the anti-hormone drug.
Chemo does not seem to offer an acceptable risk/reward benefit.
Don't lose sight of the positive numbers - 70% chance of no distant recurrence in the next 10 years. 95-100% chance of surviving 5 years. 77.4% chance of surviving 15 years.
And one other thing...triple negative cancers typically recur in the first two or three years. After that time, the risk is the same as the hormone positive cancers.
And research continues with new breakthroughs each and every day.
OK, now my brain hurts (and if you've stayed with me up to this point, yours does too!!!) and I need to stop thinking about this for a while. Not sure what we are doing for dinner, but I think we need to do something fun. Maybe a trip to Justus Drugstore for their delightful Sangria is in order.
Michelle
During our discussion, she tried to tell me that diabetics doing chemo had really good outcomes, which I immediately challenged with references to MD Anderson's statistics. She was young and didn't have much to say at that point; and bottom line, she couldn't provide anything in the way of proof. Rick said I might have been a bit too direct (well, probably!).
Then Dr. Khan came in and really just asked a few questions about my diabetes and how well it was controlled, did I have any neuropathy or other side effects, etc. Then I got dressed and we went off to a consultation room where he reviewed the flow chart for treating breast cancer that I have already seen. He, of course, recommended chemo and then possibly anti-hormone therapy, depending on the status of my Estrogen Receptors, which will be tested in a path lab again. I guess we're going with the best 3 out of 4 here. He did say the Oncotype score was meaningless (which was what I suspected), and he gave me his prediction of my chance for distant recurrence - 30% within 10 years. Well, that's better than the Onco score which was 34% so I gained a few odds in my favor...LOL!
We discussed the side effects of the two most popular chemo protocols - with one (TC) being the "up to" 70% risk of neuropathy and the other (AC) being a 5 times higher risk for cardiomyopathy. He suggested we think about a first generation regime (CMF) that, while not as effective as the newer protocols, has as its main side effects a risk of leukemia and long-term loss of cognitive function (also known as chemo brain). And last but not least, we discussed Xeloda, a "metronomic" chemo administered orally that hasn't proven itself as all that effective and has for its main side effect something called hand - foot syndrome. Here's a little info on that nasty SE that occurs in up to 60% of the folks in the clinical trials:
Also called hand-foot syndrome or hand-to-foot syndrome, Palmar-Plantar Erythrodysesthesia is a side effect, which can occur with several types of chemotherapy or biologic therapy drugs used to treat cancer. For example, Capecitabine (Xeloda®), 5-Flurouracil (5FU), continuous-infusion doxorubicin, doxorubicin liposomal (Doxil®), and high-dose Interleukin-2 can cause this skin reaction for some patients. Following administration of chemotherapy, small amounts of drug leak out of very small blood vessels called capillaries in the palms of the hands and soles of the feet. Exposure of your hands and feet to heat as well as friction on your palms and soles increases the amount of drug in the capillaries and increases the amount of drug leakage. This leakage of drug results in redness, tenderness, and possibly peeling of the palms and soles. The redness, also known as palmar-plantar erythema, looks like sunburn. The areas affected can become dry and peel, with numbness or tingling developing. Hand-foot syndrome can be uncomfortable and can interfere with your ability to carry out normal activities.
None of this seems worth the risk as statistically, 100% of women with a Stage 1 breast cancer are live and kicking within five years. Yup, that's what the Surveillance, Epidemiology, and End Results (SEER) Program of the National Institute of Health says. Here's a link to this chart in case you're curious:
http://seer.cancer.gov/publications/survival/surv_breast.pdf
This program involves more than 250,000 cases of which more than 31,000 are the same size as my tumor - localized and 17 mm or 1.7 cm.
Even if you consider my likely ER negative status, for which they had only 3 years of data (apparently they only started checking these hormone receptors in the very late 1980's), my 3 year survivability is more than 95%.
Unfortunately, this data is not as "modern" as we might like it to be, with statistics that end with 2001.
So, what are the potential benefits of doing chemo, assuming I could magically escape each and every long-term side effect?
Here's a link to the math calculator; remember when I said I just wanted this to be a math problem? I've learned a great deal in the last couple of months, and it's just not that easy!
http://www.lifemath.net/cancer/breastcancer/therapy/index.php
I enter my age, size of tumor, grade and type of tumor, and hormone receptor status (using negatives for now).
The result is that there is a 22.6% death rate from cancer within 15 years. Having no chemo treatment shortens my 24 year life expectancy to 20 years. If I proceed with the CMF chemo protocol, it buys back 229 days. Hmmm.... and that doesn't count any impact from the chemo, like leukemia. I would go through chemo hell for 229 days...doesn't sound like much of a deal to me.
The picture improves if by some miracle my hormone receptors are declared positive. With hormone therapy and no chemo, the 15 year cancer death rate is 12.2%. Of course, now we're talking about osteoporosis as a side effect, but that can be treated.
I haven't mentioned much about Xeloda because I haven't yet found the clinical trial data that discusses its success rate. I know it's being used by women who are Stage IV as they tend to cycle through various lower dose chemo drugs hoping to keep their metastises at bay. That would not be applicable in my situation because....
There is no way to prove or disprove whether or not a single cancer cell made it past the Sentinel Node. We know the nodes were clear. We know that cancer cells typically go to the Sentinel Node first, before entering the rest of the body. We know it was a very, very angry, fast-growing tumor that couldn't have been there very long or it would have been ginormous with its 90% proliferation rate.
Here's where we are leaning:
If the new pathology report indicates positive hormone receptors, even weakly, then we will likely want to do something about anti-hormone therapy. There is some likelihood that it might not be that effective under those circumstances. We would probably take a "natural" approach to reducing my hormone levels, which can be checked via bloodwork to attain the same level that the anti-hormone drug would achieve. If the pathology report surprises us with "positive" news (an unlikely scenario but one can hope), I will take the anti-hormone drug.
Chemo does not seem to offer an acceptable risk/reward benefit.
Don't lose sight of the positive numbers - 70% chance of no distant recurrence in the next 10 years. 95-100% chance of surviving 5 years. 77.4% chance of surviving 15 years.
And one other thing...triple negative cancers typically recur in the first two or three years. After that time, the risk is the same as the hormone positive cancers.
And research continues with new breakthroughs each and every day.
OK, now my brain hurts (and if you've stayed with me up to this point, yours does too!!!) and I need to stop thinking about this for a while. Not sure what we are doing for dinner, but I think we need to do something fun. Maybe a trip to Justus Drugstore for their delightful Sangria is in order.
Michelle
Wednesday, August 4, 2010
Glowing Success!
Yeah, I'm done! Can you tell??? After 13 CT scans and 10 radioactive treatments, I've definitely got a new look...LOL!
Everything went superbly, the removal process was a big nothing, and I have completed another milestone along this journey. I feel fine, other than a bit of sleepiness from the one Vicodin I took under pressure from the staff at the clinic. I really didn't need it as I didn't feel any discomfort when the doctor drained the saline from the balloon and gently pulled it out along with the catheter.
Everyone was so very nice, they even "hummed" Pomp and Circumstance as they brought me in for my last treatment. After "graduation" they gave me a "Purple Heart" diploma signed by all the wonderful technicians and nurses.
The doctor pulled the skin together to close the opening and applied steri strips, which I will need to keep in place until it heals. Nurse Karen finished the "bandaging" and I was, as they say, outta there! So, I still can't submerge myself in the pool or a bathtub until the hole heals over. But I can take a shower carefully and sit in a floatie in the pool, just being careful not to topple in. I think I can manage that! I go back in two weeks for a follow-up.
It's going to be nice to sleep tonight without a 4 inch catheter sticking out of me.
Oh, and this is the first time I've seen the "cosmetic" results of the lumpectomy, because the cavity had been inflated for the whole time by the balloon with saline. Amazing! My breast surgeon is brilliant!
Michelle
Tuesday, August 3, 2010
Mammosite treatments, updates and plans
The radiation treatments are going well, no side effects that I can tell, and I have just 3 left! Tomorrow afternoon I have to take pain meds (read that as Vicodin!) because after the last treatment, they will drain and deflate the balloon and pull it out. I find it amusing that a place that administers chemotherapy can't administer a little lidocaine to numb the area and instead is pushing the pain pills...LOL! I guess I'll be loopy for the rest of the afternoon and evening. I wish Vicodin put me to sleep - I could look forward to a good nap!
Funny story: so as a child of the 50's and 60's and the cold war, I remember bomb drills and tv documentaries about the aftermath of nuclear war. You've probably seen them (if you're over 50)...after a nuclear attack, men in white protective suits come out with geiger counters to measure radiation levels to determine if it's safe for everyone else to come out of their shelters. I remember clearly having bad dreams about all this as it was a really big deal, especially the Cuban Missile Crisis. Well, that's a little like what's happening to me after each treatment. Yesterday morning I told the Physicist that he was "the man of my dreams " because after every treatment, he's the first one in the room, dressed in a white lab coat, approaching me with a geiger counter (which looks no different than the ones from my childhood visions). He declares me "OK" then everyone else comes in behind him. It was a very funny conversation but even funnier when I went back in the afternoon and he came in without his lab coat and said, "see, no white coat!"
Yesterday, while I was waiting for my afternoon treatment, I received a call from "scary" oncologist number one, and we actually had a very good conversation. I told him that I was seeking a second opinion, we talked about my weak ER score, the possibility of still trying anti-hormone therapy, and discussed the possibility of a "gentle chemotherapy" approach. He seems to have "gotten it" as far as chemo and diabetes is concerned, and said that he would not now recommend Taxol or Taxotere for me because of the neuropathy side effects. That's a turnabout from our first meeting, so I feel like he listened to me. He did think it was encouraging that my tumor was much smaller than he thought and that I was now a Stage 1 with clear nodes. He made me promise to call him on Monday, after visiting the onco at KU Med (Friday appt) and sleeping on the recommendations. Maybe he's not so scary, after all :) And I will call him.
Allison and Oreo are back in New Hampshire after spending a month with us. It is certainly quiet around here without the little devil dog running around trying to chew on anything within reach. Next weekend (8/14) Paul, Christine and the three grandkids will be here for a week. Now that will be fun! We have all kinds of things in mind to do, so I am hoping the weather cooperates. As much as I love the summer heat, a bit of a break will make it easier to do fun outdoor things like go to the Butterfly exhibit at Powell Gardens or take the kids to CoolCrest for mini-golf. But there's always the pool, so we'll all have fun regardless of the weather.
Rick and I have planned a 4-day getaway to Estes Park, CO. This will either be a celebration of "I've finished all the treatment" or a pleasant interlude before beginning some sort of gentle chemo (I really think that's an oxymoron!). We are spending the first two nights at the Ponderosa Inn (doesn't that bring back memories???) and then we are going to Kokopelli's Inn which is a B&B. We went to Estes Park three years ago and just loved it, so we decided to return. It's about a 10 hour drive across the state of Kansas, which is "bigger than you think". Hehehe, that is their state tourism slogan and yup, it seems like it will never end when you're driving west on I-70!
And one last thing, now that I've gone on forever... don't forget that Sunday, August 8th, is Kansas City's Race for the Cure. I know some of you indicated you wanted to participate but for lots of reasons didn't register on the team. If you are participating but didn't sign up through the team registry, please let me know so we can meet up and walk together. Also, we are going to breakfast at Chaz's in the Rafael after the race (9:30 or so). If you'd like to join us, tell me and I'll add you to our reservation. If you haven't registered but still want to walk, it's not too late. You can even register on Sunday morning at Union Station. It's probably going to be warm and I am planning on walking the one mile event (or having Rick "Hall" me along if I get too tired). I'll leave the 3-mile jaunt to those of you in better shape than me!
That's it, I think. You're caught up on all the news, and I'll let you all know how everything goes on Wednesday afternoon.
Michelle
Funny story: so as a child of the 50's and 60's and the cold war, I remember bomb drills and tv documentaries about the aftermath of nuclear war. You've probably seen them (if you're over 50)...after a nuclear attack, men in white protective suits come out with geiger counters to measure radiation levels to determine if it's safe for everyone else to come out of their shelters. I remember clearly having bad dreams about all this as it was a really big deal, especially the Cuban Missile Crisis. Well, that's a little like what's happening to me after each treatment. Yesterday morning I told the Physicist that he was "the man of my dreams " because after every treatment, he's the first one in the room, dressed in a white lab coat, approaching me with a geiger counter (which looks no different than the ones from my childhood visions). He declares me "OK" then everyone else comes in behind him. It was a very funny conversation but even funnier when I went back in the afternoon and he came in without his lab coat and said, "see, no white coat!"
Yesterday, while I was waiting for my afternoon treatment, I received a call from "scary" oncologist number one, and we actually had a very good conversation. I told him that I was seeking a second opinion, we talked about my weak ER score, the possibility of still trying anti-hormone therapy, and discussed the possibility of a "gentle chemotherapy" approach. He seems to have "gotten it" as far as chemo and diabetes is concerned, and said that he would not now recommend Taxol or Taxotere for me because of the neuropathy side effects. That's a turnabout from our first meeting, so I feel like he listened to me. He did think it was encouraging that my tumor was much smaller than he thought and that I was now a Stage 1 with clear nodes. He made me promise to call him on Monday, after visiting the onco at KU Med (Friday appt) and sleeping on the recommendations. Maybe he's not so scary, after all :) And I will call him.
Allison and Oreo are back in New Hampshire after spending a month with us. It is certainly quiet around here without the little devil dog running around trying to chew on anything within reach. Next weekend (8/14) Paul, Christine and the three grandkids will be here for a week. Now that will be fun! We have all kinds of things in mind to do, so I am hoping the weather cooperates. As much as I love the summer heat, a bit of a break will make it easier to do fun outdoor things like go to the Butterfly exhibit at Powell Gardens or take the kids to CoolCrest for mini-golf. But there's always the pool, so we'll all have fun regardless of the weather.
Rick and I have planned a 4-day getaway to Estes Park, CO. This will either be a celebration of "I've finished all the treatment" or a pleasant interlude before beginning some sort of gentle chemo (I really think that's an oxymoron!). We are spending the first two nights at the Ponderosa Inn (doesn't that bring back memories???) and then we are going to Kokopelli's Inn which is a B&B. We went to Estes Park three years ago and just loved it, so we decided to return. It's about a 10 hour drive across the state of Kansas, which is "bigger than you think". Hehehe, that is their state tourism slogan and yup, it seems like it will never end when you're driving west on I-70!
And one last thing, now that I've gone on forever... don't forget that Sunday, August 8th, is Kansas City's Race for the Cure. I know some of you indicated you wanted to participate but for lots of reasons didn't register on the team. If you are participating but didn't sign up through the team registry, please let me know so we can meet up and walk together. Also, we are going to breakfast at Chaz's in the Rafael after the race (9:30 or so). If you'd like to join us, tell me and I'll add you to our reservation. If you haven't registered but still want to walk, it's not too late. You can even register on Sunday morning at Union Station. It's probably going to be warm and I am planning on walking the one mile event (or having Rick "Hall" me along if I get too tired). I'll leave the 3-mile jaunt to those of you in better shape than me!
That's it, I think. You're caught up on all the news, and I'll let you all know how everything goes on Wednesday afternoon.
Michelle
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