After what felt like an incredibly long wait of a week, I heard from my oncologist today. I knew that the news wasn't going to be what I hoped b/c it does not normally take that long to hear about tumor markers. My tumor markers had risen which put a kink in the plan from the previous week. The one thing I knew was that when I did hear from her she would have decided on a plan.
After reviewing my scans, how fast the tumor(s) have grown, etc., it was decided to stay on the same basic plan until the ptscan as I still really need to heal and my tumors have not been fast growing since it returned. I won't be doing tumor markers again until we do the scan b/c she decided it wasn't worth the stress to me. We also discussed whether to do the ptscan before or after the trip, but in the end, she said it wouldn't change anything except for making me stressed as she didn't want me going out of the country that close to starting the chemo. She wants me to be able to do the Baltic Capitals cruise, and the scan/ next appointment will be done the week we are back. The assumption is that I will begin the Xeloda after that scan. I will still take the aromasin now; so, there will still be an active treatment that hopefully is at least holding things at bay a bit. She reiterated several times that the time is needed to make sure that I have healed.
So, while it is a hiccup, it really hasn't changed the plan significantly from before. I still appreciate prayers that the aromasin holds things at bay while I heal and that we are making the best decisions for me. Thanks so much, and have a good weekend!
Friday, April 13, 2018
Saturday, April 7, 2018
New plan
I attempted the 5 mg dosage of Afinitor and made it through 3 doses before the bad side effects began again. So, that medicine was stopped, and I had to wait to see my oncologist yesterday. It was a really tough week of waiting and healing. Knowing that my future path was most likely going to be going on some form of more traditional chemo drug felt like a major crossroads, especially when I still have such a small amount of cancer in me. My oncologist had told me that a pill chemo would probably be our option to keep me as free as possible; so, I researched that drug and tried to find out all I could before my appointment in order to know what questions I should ask.
During the last 5 months, I have been on a combo of drugs the Afinitor (or as I like to call it the big bad one that my body hates) and Aromasin which is an anti-hormonal. Even when I was off the bad one and trying to heal, I still was taking the anti-hormonal. What we didn't know in our discussions at my appointment in March until after the tumor markers came back is that the anti-hormonal seems to be doing something as my tumor markers still came down after only 4 days of the 7.5 mg. It was only .7 but down is down. This made me wonder if staying on the Aromasin for at least a little while could be an option.
One of the most important things I've learned in this journey is that you have to advocate for yourself and research the treatments. There are two sites, breastcancer.org & inspire.com, that I've used a lot to research and get information from others doing the various treatments. I trust my oncologist, and thankfully, she welcomes questions & understands that for me knowledge gives me some sense of control, which is an important factor when you feel like something else is controlling your life in many ways. I want to share the thought/appointment process about determining a new plan because many don't realize that as the patient, they will have to make some decisions about what to do.
My oncologist came to our appointment with two options. The first was the chemo pill, Xeloda, alone. I had researched this drug and knew the major side effects that came with taking it and also a little about the traditional doses, dosage schedule options, etc. The second was going on a clinical trial that would guarantee I got Xeloda but could also pair it with a new drug. But, this trial would have a placebo arm; so, I may or may not actually get the new drug at all. After she told me just a little about these two options, I asked if there was any chance of staying on the Aromasin for a little while since it did seem to be at least keeping me stable. Some people take the aromasin alone as a first or second line drug, but I wasn't sure if it would still be a possibility as a 5th line drug by itself.
My oncologist looked first at a report from foundation one where we had sent my biopsy from 2016. Apparently, this report includes a marker about whether or not the cancer has become resistant to the anti-hormonal therapies. Thankfully, my results did not show that resistance. We also discussed the trips and things that I have coming up this summer. I made it clear that treatment was more important than any trip, but we did discuss that for the Baltics capitals cruise in May, it might be better to not be taking active chemo. I definitely don't want to risk seeing the inside of a Russian hospital! She did say that staying on the aromasin might be an option for now but still seemed to be thinking on it & not quite sure. So, I said, I'm good with whatever you think, and want to do whatever you would do if you were in my shoes. I did not want her to think I was pushing for one way or the other if she didn't think the Aromasin was truly a viable option.
After looking at some blood tests and other things, she said that she thought staying on the Aromasin for right now would be the best plan. She wants me completely healed before I started something else anyway. So, the plan for now, if the tumor markers taken yesterday come back stable or reduced, is that I will stay on the Aromasin and retest my tumor markers in 3 weeks. If they are okay at that time, we will do a petscan after my trip in May. If they have jumped higher, we will try to get the petscan done before I leave. After the results of the petscan, we will have to decide what to do from there. The Xeloda chemo options are still very much on the table for that time, but there is a little reprieve.
Deciding whether to do a clinical trial or not is a really hard decision. Metastatic breast cancer definitely needs more research, but there are a lot of ifs in doing this clinical trial:
* you don't know whether you'll actually get the trial drug or not
* will I qualify for the trial drug if approved later if I've already done Xeloda by itself?
* the trial is not done at my home office; so, 30 more minutes of travel each way would be tacked on to every appointment, and there are a lot more appointments potentially involved in a clinical trial.
* there is little flexibility on a trial, and I am still trying to work, etc.
* the final aspect is a biggie for me -- The clinical dose of Xeloda is a high dose taken 2 weeks on /1 week off. From everything I've read, most people do better on a lower dose taken 1 week on/ 1 week off. This helps to control the side effects better. My oncologist would do the 2nd option for dosing while the trial would do the first.
With all of that said, I think I've decided when the time comes to go with just doing the Xeloda with my oncologist rather than the trial. I think the dosing will be better and that I will have the flexibility that I need for working, etc. It is a bit scary having to make these types of decisions and hoping that what you chose will be the best in the long run for you. I'm just telling myself that I'm making the best decision I can in this moment, and that I won't look back and second-guess myself later on. So, I think I've gotten the best possible options from my appointment yesterday that I could have gotten, and I feel pretty confident in this going forward. Of course if my tumor markers taken yesterday have raised, then we might be back now at the chemo options, but at least, I think I've made the best choice on those that I can for me at this time.
If you've made it all the way to the end of this long post, thanks for reading and hopefully, you've gotten a little understanding about what goes into choosing a new plan. It is not done on a whim, it is done with a lot of research from the oncologist and patient. That is why it is sometimes hard when others say but have you tried this? or that?. A lot of thought and having to trust the oncologist & your own judgement comes into play with these decisions. I would appreciate prayers that we have chosen the right path for now, that the tumor markers will stay stable or reduce and that these medicines will do their job! Thanks so much, and I hope everyone has a good weekend!
During the last 5 months, I have been on a combo of drugs the Afinitor (or as I like to call it the big bad one that my body hates) and Aromasin which is an anti-hormonal. Even when I was off the bad one and trying to heal, I still was taking the anti-hormonal. What we didn't know in our discussions at my appointment in March until after the tumor markers came back is that the anti-hormonal seems to be doing something as my tumor markers still came down after only 4 days of the 7.5 mg. It was only .7 but down is down. This made me wonder if staying on the Aromasin for at least a little while could be an option.
One of the most important things I've learned in this journey is that you have to advocate for yourself and research the treatments. There are two sites, breastcancer.org & inspire.com, that I've used a lot to research and get information from others doing the various treatments. I trust my oncologist, and thankfully, she welcomes questions & understands that for me knowledge gives me some sense of control, which is an important factor when you feel like something else is controlling your life in many ways. I want to share the thought/appointment process about determining a new plan because many don't realize that as the patient, they will have to make some decisions about what to do.
My oncologist came to our appointment with two options. The first was the chemo pill, Xeloda, alone. I had researched this drug and knew the major side effects that came with taking it and also a little about the traditional doses, dosage schedule options, etc. The second was going on a clinical trial that would guarantee I got Xeloda but could also pair it with a new drug. But, this trial would have a placebo arm; so, I may or may not actually get the new drug at all. After she told me just a little about these two options, I asked if there was any chance of staying on the Aromasin for a little while since it did seem to be at least keeping me stable. Some people take the aromasin alone as a first or second line drug, but I wasn't sure if it would still be a possibility as a 5th line drug by itself.
My oncologist looked first at a report from foundation one where we had sent my biopsy from 2016. Apparently, this report includes a marker about whether or not the cancer has become resistant to the anti-hormonal therapies. Thankfully, my results did not show that resistance. We also discussed the trips and things that I have coming up this summer. I made it clear that treatment was more important than any trip, but we did discuss that for the Baltics capitals cruise in May, it might be better to not be taking active chemo. I definitely don't want to risk seeing the inside of a Russian hospital! She did say that staying on the aromasin might be an option for now but still seemed to be thinking on it & not quite sure. So, I said, I'm good with whatever you think, and want to do whatever you would do if you were in my shoes. I did not want her to think I was pushing for one way or the other if she didn't think the Aromasin was truly a viable option.
After looking at some blood tests and other things, she said that she thought staying on the Aromasin for right now would be the best plan. She wants me completely healed before I started something else anyway. So, the plan for now, if the tumor markers taken yesterday come back stable or reduced, is that I will stay on the Aromasin and retest my tumor markers in 3 weeks. If they are okay at that time, we will do a petscan after my trip in May. If they have jumped higher, we will try to get the petscan done before I leave. After the results of the petscan, we will have to decide what to do from there. The Xeloda chemo options are still very much on the table for that time, but there is a little reprieve.
Deciding whether to do a clinical trial or not is a really hard decision. Metastatic breast cancer definitely needs more research, but there are a lot of ifs in doing this clinical trial:
* you don't know whether you'll actually get the trial drug or not
* will I qualify for the trial drug if approved later if I've already done Xeloda by itself?
* the trial is not done at my home office; so, 30 more minutes of travel each way would be tacked on to every appointment, and there are a lot more appointments potentially involved in a clinical trial.
* there is little flexibility on a trial, and I am still trying to work, etc.
* the final aspect is a biggie for me -- The clinical dose of Xeloda is a high dose taken 2 weeks on /1 week off. From everything I've read, most people do better on a lower dose taken 1 week on/ 1 week off. This helps to control the side effects better. My oncologist would do the 2nd option for dosing while the trial would do the first.
With all of that said, I think I've decided when the time comes to go with just doing the Xeloda with my oncologist rather than the trial. I think the dosing will be better and that I will have the flexibility that I need for working, etc. It is a bit scary having to make these types of decisions and hoping that what you chose will be the best in the long run for you. I'm just telling myself that I'm making the best decision I can in this moment, and that I won't look back and second-guess myself later on. So, I think I've gotten the best possible options from my appointment yesterday that I could have gotten, and I feel pretty confident in this going forward. Of course if my tumor markers taken yesterday have raised, then we might be back now at the chemo options, but at least, I think I've made the best choice on those that I can for me at this time.
If you've made it all the way to the end of this long post, thanks for reading and hopefully, you've gotten a little understanding about what goes into choosing a new plan. It is not done on a whim, it is done with a lot of research from the oncologist and patient. That is why it is sometimes hard when others say but have you tried this? or that?. A lot of thought and having to trust the oncologist & your own judgement comes into play with these decisions. I would appreciate prayers that we have chosen the right path for now, that the tumor markers will stay stable or reduce and that these medicines will do their job! Thanks so much, and I hope everyone has a good weekend!
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