I have now completed two rounds of IV chemo and 6 doses of trial drug. After the first round, I felt ok. Any nausea that I felt was quite mild, nothing worse than I had experienced on previous chemo drug.
Today marked Day #3 after second infusion treatment, administered June 1. I can definitely say that I am feeling the effects today. I have been quite dizzy and "loopy" all morning and I am experiencing stomach upset and some nausea. It feels strange to have no appetite and yet to hear my stomach grumbling for food. In spite of feeling bouts of mild nausea and dizziness, I decided to force myself to consume a healthy and substantial lunch. So far, so good. I do have anti-nausea meds and will take them if need be.
So far no loss of hair. But it's still early in the game.
My biggest problem is still a chronic cough, exacerbated by talking and attempting to sing (which I did too much of yesterday at a church gig). By the end of a typical day, I am exhausted from coughing. My oncologist is hopeful that the steroids I am being given in my pre-chemo cocktail infusion might help alleviate the cough; so far, this has not been the case. No one seems to be able to get to the cause of the cough; my doctor wonders if it might have something to do with the cancer (lymph?), but nothing has shown up on scans or x-rays. Meanwhile, I avoid conversations with people, either on the phone or in person -- the coughing is an embarrassing annoyance. And of course, not being able to sing is a huge deficit in my life.
Meanwhile, I try to find joy wherever I can.
I saw my first goldfinch feeding at a new bird feeder outside my dining room window this afternoon. Beautiful.
I also bought some new "sexy" silver shoes to wear to my niece Jessa's upcoming wedding.
Pretty birds and pretty footwear -- hallmarks of the day. :-)
Betsy's Road Less Traveled
Saturday, June 4, 2016
Wednesday, May 25, 2016
Lab Rat in the Wig Room
First, let us define the "wig room." It is that mysterious place where I have seen patients entering and exiting when I am in the oncologist's waiting room. It is where chemotherapy is administered via IV. It is that place from whence come stories abounding in the horrors of chemo: hair loss, nausea, fatigue, etc. People come and go from the wig room with various forms of head-gear to hide that trademark of chemo: loss of hair.
The Wig Room is a place I have been trying to avoid. But today I joined the ranks of IV chemo users.
How on earth did this happen? I had been on Afinitor since January (see previous post). And although results were not showing much advancement of the cancer, not much was happening in the way of improvement (according to a scan in early April). Also, blood work, although not getting worse, was getting better only in small increments.
My oncologist knows how I feel about full-body chemo; she knows I have been trying to avoid it. I think she was a bit astonished when I was the one expressing an interest in finding something stronger. I recall using that age-old adage, "Doctor, I think it's time to shit or get off the pot. What do you think?"
She then took the lead and offered me three options: 1)chemo in pill form, 2) full-body IV chemo with a once-a-month triple dose, or 3) full-body chemo more spread out in once-a-week-for-3-weeks cycles. I opted for #3. I felt that the pill option would not be potent enough, similar to the Afinitor I had been on. And although the triple-dose IV would mean fewer visits to the Wig Room, the full-body damage would be pretty extreme.
Then the doc sweetened the pot by offering to put me on a new experimental research study. A new chemo drug (in pill form), Alisertib, is being studied to see if it boosts the effects of the IV chemo (Paclitaxel). The study is randomized, with some patients taking only the IV chemo and some taking it in combo with Alisertib. Today I found out that I am one of the study patients who will be taking both chemotherapies. This might mean an increase in side effects; just not sure. But I am very happy to get the opportunity to be taking this added drug; initial studies have found it to be very effective.
Today was Day One in the Wig Room. Prior to the chemo IV, I was given anti-nausea med, steroid, and Benadryl in IV form. Before the pre-chemo cocktail was even finished, I could feel the effects of the Benadryl; I was super sleepy. I have remained pretty groggy all day; really had to rally my brain to teach piano students. But otherwise, I am feeling ok so far. Appetite, although somewhat suppressed, is ok. No puking, no nausea. I am told that the third day more side effects might appear as the anti-nausea and steroid meds where off. We shall see.
So I am now the Lab Rat in the Wig Room. I am trying to approach all of this like a Taoist. Although I am not driving the bus, I am going to do my best to enjoy the ride. Am working on adjusting my thinking.... just trying to approach all of this with a cheerful heart. I believe it was Wayne Dyer who said "Change the way you look at things, and the things you look at change." Now, ain't THAT a little pearl of wisdom?
The Wig Room is a place I have been trying to avoid. But today I joined the ranks of IV chemo users.
How on earth did this happen? I had been on Afinitor since January (see previous post). And although results were not showing much advancement of the cancer, not much was happening in the way of improvement (according to a scan in early April). Also, blood work, although not getting worse, was getting better only in small increments.
My oncologist knows how I feel about full-body chemo; she knows I have been trying to avoid it. I think she was a bit astonished when I was the one expressing an interest in finding something stronger. I recall using that age-old adage, "Doctor, I think it's time to shit or get off the pot. What do you think?"
She then took the lead and offered me three options: 1)chemo in pill form, 2) full-body IV chemo with a once-a-month triple dose, or 3) full-body chemo more spread out in once-a-week-for-3-weeks cycles. I opted for #3. I felt that the pill option would not be potent enough, similar to the Afinitor I had been on. And although the triple-dose IV would mean fewer visits to the Wig Room, the full-body damage would be pretty extreme.
Then the doc sweetened the pot by offering to put me on a new experimental research study. A new chemo drug (in pill form), Alisertib, is being studied to see if it boosts the effects of the IV chemo (Paclitaxel). The study is randomized, with some patients taking only the IV chemo and some taking it in combo with Alisertib. Today I found out that I am one of the study patients who will be taking both chemotherapies. This might mean an increase in side effects; just not sure. But I am very happy to get the opportunity to be taking this added drug; initial studies have found it to be very effective.
Today was Day One in the Wig Room. Prior to the chemo IV, I was given anti-nausea med, steroid, and Benadryl in IV form. Before the pre-chemo cocktail was even finished, I could feel the effects of the Benadryl; I was super sleepy. I have remained pretty groggy all day; really had to rally my brain to teach piano students. But otherwise, I am feeling ok so far. Appetite, although somewhat suppressed, is ok. No puking, no nausea. I am told that the third day more side effects might appear as the anti-nausea and steroid meds where off. We shall see.
So I am now the Lab Rat in the Wig Room. I am trying to approach all of this like a Taoist. Although I am not driving the bus, I am going to do my best to enjoy the ride. Am working on adjusting my thinking.... just trying to approach all of this with a cheerful heart. I believe it was Wayne Dyer who said "Change the way you look at things, and the things you look at change." Now, ain't THAT a little pearl of wisdom?
Saturday, April 9, 2016
Coasting
I have not posted to the blog in a long time.... simply because there hasn't been much to report.
I have been taking the chemo drug Afinitor. Side effects are not debilitating. Stomach pain has been alleviated with probiotics (fermented sauerkraut). I have had occasional days of low-grade fever, feeling loopy with accompanying headaches. But over all, I am tolerating the drug pretty well.
The last two visits to the oncologist have shown blood cancer markers to be slightly elevated, which is generally not a good thing. My doctor was not alarmed by this the first time. But after the second elevation, another scan was ordered; this occurred last Wednesday, April 6.
I have not met with the doctor to go over the scan report in detail. But in a brief phone conversation, she said that the scan revealed very little change since the last scan (late December). There has been no improvement (that is, no reduction in cancer); and there is one additional "shadow" found in the upper part of the breast where the cancer originated. The recommendation was that I should just keep taking the Afinitor, with a "wait-and-see" attitude.
So I am coasting. No longer driving the bus. The driver appears to have put the engine into neutral.
I have stopped singing, since the chronic cough I have had for almost a year affects my ability to sustain good vocal quality. No one seems to know what the cough is all about. I have been to an ENT doc, a pulmonologist, taken steroids and inhalers and antibiotics. Even my oncologist, wondering if it was related to the cancer, ordered scans of chest and lungs. Nothing found.
I suppose the fact that the cancer is not overtaking me and spreading like wildfire is a good thing. But it's still there. I try to keep my daily routine as normal as possible. Still teaching piano, still playing church gigs. Living "in the moment" is the best survival tactic.
I have been taking the chemo drug Afinitor. Side effects are not debilitating. Stomach pain has been alleviated with probiotics (fermented sauerkraut). I have had occasional days of low-grade fever, feeling loopy with accompanying headaches. But over all, I am tolerating the drug pretty well.
The last two visits to the oncologist have shown blood cancer markers to be slightly elevated, which is generally not a good thing. My doctor was not alarmed by this the first time. But after the second elevation, another scan was ordered; this occurred last Wednesday, April 6.
I have not met with the doctor to go over the scan report in detail. But in a brief phone conversation, she said that the scan revealed very little change since the last scan (late December). There has been no improvement (that is, no reduction in cancer); and there is one additional "shadow" found in the upper part of the breast where the cancer originated. The recommendation was that I should just keep taking the Afinitor, with a "wait-and-see" attitude.
So I am coasting. No longer driving the bus. The driver appears to have put the engine into neutral.
I have stopped singing, since the chronic cough I have had for almost a year affects my ability to sustain good vocal quality. No one seems to know what the cough is all about. I have been to an ENT doc, a pulmonologist, taken steroids and inhalers and antibiotics. Even my oncologist, wondering if it was related to the cancer, ordered scans of chest and lungs. Nothing found.
I suppose the fact that the cancer is not overtaking me and spreading like wildfire is a good thing. But it's still there. I try to keep my daily routine as normal as possible. Still teaching piano, still playing church gigs. Living "in the moment" is the best survival tactic.
Monday, February 15, 2016
Drug Purgatory
Better than Drug Hell, ay?
I am still on the Afinitor chemo drug and the Aromasin estrogen blocker, just praying that they have an effect on the cancer. So far, side effects are not debilitating, just mildly annoying: mouth sores (they come and go), suppressed appetite, some stomach cramping.
Meanwhile, I had blood work last week. Thankfully, the cancer markers had not increased; in fact, one of them had diminished slightly. My doc says it is a bit soon to determine if the drugs are having the desired effect. So we take the drugs .... and we wait .... and we hope.
A couple of posts back, I mentioned that my bio-feedback practitioner found evidence that it was the daily IV vitamin C infusions that made a positive impact on my condition when I was in Mexico last September. So in December I increased my oral C dosage. My oncologist then told me that the drugs I am now taking will not work as well in conjunction with high saturations of vitamin C. So I have had to curtail my vitamin C protocol while on this drug. What a bummer. It's as if "life building" protocols are counteracting "life killing" protocols.
So sad I am to be on this train of destruction rather than that of "building up." Alas, it is important to remain positive, so I am hopeful that this drug therapy is working.
Next appointment for blood labs is in March. Stay tuned.... and keep those positive vibes coming!
I am still on the Afinitor chemo drug and the Aromasin estrogen blocker, just praying that they have an effect on the cancer. So far, side effects are not debilitating, just mildly annoying: mouth sores (they come and go), suppressed appetite, some stomach cramping.
Meanwhile, I had blood work last week. Thankfully, the cancer markers had not increased; in fact, one of them had diminished slightly. My doc says it is a bit soon to determine if the drugs are having the desired effect. So we take the drugs .... and we wait .... and we hope.
A couple of posts back, I mentioned that my bio-feedback practitioner found evidence that it was the daily IV vitamin C infusions that made a positive impact on my condition when I was in Mexico last September. So in December I increased my oral C dosage. My oncologist then told me that the drugs I am now taking will not work as well in conjunction with high saturations of vitamin C. So I have had to curtail my vitamin C protocol while on this drug. What a bummer. It's as if "life building" protocols are counteracting "life killing" protocols.
So sad I am to be on this train of destruction rather than that of "building up." Alas, it is important to remain positive, so I am hopeful that this drug therapy is working.
Next appointment for blood labs is in March. Stay tuned.... and keep those positive vibes coming!
Wednesday, January 20, 2016
DRUG H$LL
In my January 6 post, I talked about boarding the Big Pharma bus and how my journey was taking a turn down a road I am reluctantly following. To review: I am taking two new drugs: Afinitor (drug name "everolimus") and Aromasin ("exemestane"). I was under the impression that the Afinitor was NOT considered chemotherapy. I was wrong. Upon further researching, I found that it is indeed labeled "chemo," it's just supposedly more targeted to specific cancer cells than standard chemo (which pretty much kills everything).
I was able to begin both drugs right away because my oncologist gave me a week's supply of the Afinitor (although it was double the dose I was prescribed) and I was able to continue on Tamoxifen (an estrogen blocker I already had) until the Aromasin arrived.
So I thought all was well. I took the drugs and carefully monitored how I was feeling, hoping I would not experience any of the (absolutely terrifying) side effects that were listed in the drug description. So far, not a big deal. I have experienced stomach upset, loss of appetite, fatigue, and general loopiness -- but nothing that has kept me from average daily functioning.
Then I got a call from Humana, my drug prescription people. It seems I was being red-flagged because of the Afinitor order. The possibility existed that I might NOT be approved for the drug based upon my low-premium / high-deductible prescription plan with Humana. I was told that the cost of the drug was .... are you ready?..... $11,532.69 for a 28-day supply!! That comes out to approximately $412 per tablet. MY CO-PAY for this drug would be $2,600! I was asked if I wanted to go ahead and process the order and accept responsibility for this co-pay.
I was near tears. "Are you kidding me?" I asked the Humana rep. "Do you actually expect people to be able to pay this much out-of-pocket?" After a shameless rant to the poor Humana person, I apologized, told her that I knew it was not her fault; her name was Jessica and she was really very sweet and tolerated my rant with extreme patience. I then said that someone out there... not her, not me, but someone.... was making an obscene amount of money off the backs of "we the sick" in this country. Jessica agreed and sympathized. We mutually agreed that we were both in the system and could do nothing about it. She then said, "Humana has a finance department; they might be able to find you some financial assistance. Would you like me to begin that process for you?" It took me a brief 20 seconds to process what she had just said to me. I then responded: "WOULD I!? You bet, Jessica!"
So the past week has been spent waiting for phone calls from Humana. Jessica put my claim onto the top of the "urgent" pile. I love Jessica for that. A few days later, I got a call from Carlyn (who happened to be in Ohio -- when I am on the phone with customer service people, I don't know why, but I enjoy knowing where they are when they talk to me); Carlyn gave me an update, letting me know that the Afinitor had been temporarily approved by Humana, PENDING my acceptance for financial assistance. I still wasn't out of the woods.
Today, I received a phone call from Tiffany (in Phoenix -- she enjoyed hearing that we were about to receive snow in the DC area). Tiffany was the angel of mercy blowing the trumpet of good news: I was approved for assistance. My co-pay would be 0 (that's ZERO) dollars. Amazing -- from $2600 to $0.
So.... this has been a two-week excursion into drug hell. But ultimately, the news is good: the drug is approved and paid for and will be here in two days. My side effects are not great, but so far tolerable.
In the process with Humana, I found out from Carlyn that the foundation that is footing the bill for my drug is called Patient Access Network. I went to their website; it's a non-profit with HQ in Washington, DC. I plan to send them a thank you note; I might even deliver it in person because I would like to learn more about this organization. Meanwhile.... if you are ever feeling inclined to make a donation in my honor, whatever you do, DON'T let it be to one of those useless "walks for cancer awareness" or pink-ribbon organizations; let it be for Patient Access Network.
And let's hope this drug works! At $412 per pill, it oughta be the elixir of eternal life!!
I was able to begin both drugs right away because my oncologist gave me a week's supply of the Afinitor (although it was double the dose I was prescribed) and I was able to continue on Tamoxifen (an estrogen blocker I already had) until the Aromasin arrived.
So I thought all was well. I took the drugs and carefully monitored how I was feeling, hoping I would not experience any of the (absolutely terrifying) side effects that were listed in the drug description. So far, not a big deal. I have experienced stomach upset, loss of appetite, fatigue, and general loopiness -- but nothing that has kept me from average daily functioning.
Then I got a call from Humana, my drug prescription people. It seems I was being red-flagged because of the Afinitor order. The possibility existed that I might NOT be approved for the drug based upon my low-premium / high-deductible prescription plan with Humana. I was told that the cost of the drug was .... are you ready?..... $11,532.69 for a 28-day supply!! That comes out to approximately $412 per tablet. MY CO-PAY for this drug would be $2,600! I was asked if I wanted to go ahead and process the order and accept responsibility for this co-pay.
I was near tears. "Are you kidding me?" I asked the Humana rep. "Do you actually expect people to be able to pay this much out-of-pocket?" After a shameless rant to the poor Humana person, I apologized, told her that I knew it was not her fault; her name was Jessica and she was really very sweet and tolerated my rant with extreme patience. I then said that someone out there... not her, not me, but someone.... was making an obscene amount of money off the backs of "we the sick" in this country. Jessica agreed and sympathized. We mutually agreed that we were both in the system and could do nothing about it. She then said, "Humana has a finance department; they might be able to find you some financial assistance. Would you like me to begin that process for you?" It took me a brief 20 seconds to process what she had just said to me. I then responded: "WOULD I!? You bet, Jessica!"
So the past week has been spent waiting for phone calls from Humana. Jessica put my claim onto the top of the "urgent" pile. I love Jessica for that. A few days later, I got a call from Carlyn (who happened to be in Ohio -- when I am on the phone with customer service people, I don't know why, but I enjoy knowing where they are when they talk to me); Carlyn gave me an update, letting me know that the Afinitor had been temporarily approved by Humana, PENDING my acceptance for financial assistance. I still wasn't out of the woods.
Today, I received a phone call from Tiffany (in Phoenix -- she enjoyed hearing that we were about to receive snow in the DC area). Tiffany was the angel of mercy blowing the trumpet of good news: I was approved for assistance. My co-pay would be 0 (that's ZERO) dollars. Amazing -- from $2600 to $0.
So.... this has been a two-week excursion into drug hell. But ultimately, the news is good: the drug is approved and paid for and will be here in two days. My side effects are not great, but so far tolerable.
In the process with Humana, I found out from Carlyn that the foundation that is footing the bill for my drug is called Patient Access Network. I went to their website; it's a non-profit with HQ in Washington, DC. I plan to send them a thank you note; I might even deliver it in person because I would like to learn more about this organization. Meanwhile.... if you are ever feeling inclined to make a donation in my honor, whatever you do, DON'T let it be to one of those useless "walks for cancer awareness" or pink-ribbon organizations; let it be for Patient Access Network.
And let's hope this drug works! At $412 per pill, it oughta be the elixir of eternal life!!
Monday, January 11, 2016
Worry
A dear friend of mine posted the following on Facebook, just as I was sitting in my stew-pot of anxiety last week. It hit home -- hugely:
Worry is a waste of time.
It doesn't change anything.
All it does is steal your joy and keep you very busy doing nothing.
Well now, ain't that the truth!
Wednesday, January 6, 2016
The Bus: Driver or Passenger?
I am not sure why, but I use the metaphor of a bus for a lot of situations. For instance, when having a conversation about leaving this earthly plane, I often say something like, "Well, when my time comes, I would like to just get hit by a bus." This idea worked for me until someone pointed out that such a situation would create bad karma between myself and the poor bus driver, who would be overcome with guilt and remorse -- so much for that plan!
In my journey to overcome my cancer, if you have followed this blog from its formation, you will know that I am a proponent of natural therapies, and have tried to keep as far away from Big Pharma as possible. Since my initial diagnosis in the fall of 2013, I have prided myself on "being the driver of my bus."
After a visit with my oncologist today, my status has changed -- from driver of the bus to passenger. Which bus? The AMA-approved bus, the Big Pharma bus, a bus that travels a road much more heavily traveled than the less-traveled road I have been taking.
My C-T scan a week ago came back showing some signs of improvement in the original cancer sites; but it also revealed some new anomalies in liver and bone. For reasons that are very personal (and not to be discussed in detail here), I have decided to board the Big Pharma bus. This is not a happy decision for me, but will provide peace to my family instead of fear.
This means that chemotherapy might be in my future. But first, I am on two new meds: Afinitor and Aromasin. These are usually given together to try to force the body to overcome its seeming resistance to hormone blocking activity. Afinitor (scientific name Everolimus) is a type of drug that supposedly targets cancer cells more precisely than chemotherapy drugs. Aromasin ( Exemestane) is a kinase (enzyme) inhibitor. Using these drugs together is supposed to stop the tumor from making new cancer cells and cuts off the blood supply to the cancer.
Sounds perfect, doesn't it? Until you read the two-page list of side effects -- everything from nausea, mouth sores, cough (which I already have!) and diarrhea to rash, anorexia and hair loss.
But alas, I am now on the Big Pharma bus and no longer driving or choosing the route. Those side effects are just part of the road trip.
Some of you are probably thinking: Wow, Betsy must be so disappointed. Yes, I am. This is not the road I wanted to take and, quite frankly, it stinks. But then again.... I have been dreading my visit with my oncologist today, worried that she would say something like: "Well, look sister, you are in really bad shape. Ain't nothin' we can do for you. Go home and put your affairs in order." I did not get this message from the doc. I left her office thinking, "Well, dammit, this just might work." And she said, "Look, I could give you these meds plus chemo right out of the starting gate. But let's just see if the drugs themselves have an effect." So I will go back in three weeks and see how the blood work looks.
Keep those good thoughts and prayers coming.
In my journey to overcome my cancer, if you have followed this blog from its formation, you will know that I am a proponent of natural therapies, and have tried to keep as far away from Big Pharma as possible. Since my initial diagnosis in the fall of 2013, I have prided myself on "being the driver of my bus."
After a visit with my oncologist today, my status has changed -- from driver of the bus to passenger. Which bus? The AMA-approved bus, the Big Pharma bus, a bus that travels a road much more heavily traveled than the less-traveled road I have been taking.
My C-T scan a week ago came back showing some signs of improvement in the original cancer sites; but it also revealed some new anomalies in liver and bone. For reasons that are very personal (and not to be discussed in detail here), I have decided to board the Big Pharma bus. This is not a happy decision for me, but will provide peace to my family instead of fear.
This means that chemotherapy might be in my future. But first, I am on two new meds: Afinitor and Aromasin. These are usually given together to try to force the body to overcome its seeming resistance to hormone blocking activity. Afinitor (scientific name Everolimus) is a type of drug that supposedly targets cancer cells more precisely than chemotherapy drugs. Aromasin ( Exemestane) is a kinase (enzyme) inhibitor. Using these drugs together is supposed to stop the tumor from making new cancer cells and cuts off the blood supply to the cancer.
Sounds perfect, doesn't it? Until you read the two-page list of side effects -- everything from nausea, mouth sores, cough (which I already have!) and diarrhea to rash, anorexia and hair loss.
But alas, I am now on the Big Pharma bus and no longer driving or choosing the route. Those side effects are just part of the road trip.
Some of you are probably thinking: Wow, Betsy must be so disappointed. Yes, I am. This is not the road I wanted to take and, quite frankly, it stinks. But then again.... I have been dreading my visit with my oncologist today, worried that she would say something like: "Well, look sister, you are in really bad shape. Ain't nothin' we can do for you. Go home and put your affairs in order." I did not get this message from the doc. I left her office thinking, "Well, dammit, this just might work." And she said, "Look, I could give you these meds plus chemo right out of the starting gate. But let's just see if the drugs themselves have an effect." So I will go back in three weeks and see how the blood work looks.
Keep those good thoughts and prayers coming.
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