Wednesday, July 17, 2019
7 year cancerversary
Today marks 7 years since I got the call confirming that it was cancer, and honestly once we knew it was metastatic/terminal, I never expected to get to 5 years let alone 7. Making it even more wonderful is that I am at 7 years and while I've dealt with progressions, I am doing better than I could ever have imagined at this point. So, so thankful!
I've primarily been posting elsewhere this year and not updating here; so, if you've seen it on Facebook, you can skip this paragraph.... In August, we had to switch to an oral chemo option called Xeloda due to some progression. This is the last of the "easier" drugs as iv chemo will be what follows when this one fails. It seemed to work for about 7 months, but in early April, a scan confirmed that both the liver & lymph node areas had grown. Luckily, my oncologist was able to confirm with a radiation oncologist that a very targeted radiation called SBRT could be an option. I did 5 SBRT treatments at the end of April/ 1st 2 weeks of May. Once the radiation was done, we increased the amount of Xeloda per day (taken 1 week on / 1 week off). Tumor markers have been done twice since the SBRT, and both times they have come down. I have a petscan on Aug 12th & will find out results on Aug 16th. I'd appreciate your thoughts & prayers that the scan will show that there has been regression.
I get asked a lot about whether or not I'm on treatment and why, and even if there is regression or I get to No Evidence of Disease again, I will always be on active treatment. It is not preventative but rather to keep things in check as cancer is not always detectable on scans and/or can go dormant for a while but wake back up with a vengeance. Once you are stage 4 /metastatic breast cancer, they will never consider that you are cancer free. Most recently, the liver tumor was 6 cm, and there were 2 lymph nodes with cancer. Hopefully, the next scan will show reductions in both, but either way I will continue with treatment.
People also comment quite often on how much I travel (which I know is a crazy amount) and ask questions about why I do that. My best explanation is always that my chance to travel is now before I go on a treatment with bad side effects or even just have treatment requirements that make it impossible such as a weekly infusion. Once you hear that "terminal/ treatable but not curable" statement, it puts things in a different perspective as you know you can't wait for retirement or that "better time" that so many wait for. I have had several friends that were metastatic and have passed in the last 7 years that had severe side effects that kept them from doing many things. My side effects are very livable right now, but just being on the chemo has put some obstacles in my path for some types of things that I used to enjoy doing when we'd go to North Carolina such as hiking, being in rivers/lakes, etc. My time for travel is now as I never know what tomorrow may bring. (I know that is true for everyone, but a little more pressing in my type of situation) The more I travel and see all of the amazing things around the world, though; the more places that are being added to my living list.
I've thought a lot the last few days about all the things that have changed over the last 7 years, and there have been so many blessings. Two of those are my work & health insurance situations especially as relates to my desire & ability to travel. When first diagnosed, I was adjunct teaching a few classes for FC, 1-2 classes online for St Leo , and a class online for Strayer per semester. I was paying for insurance that had an incredibly high deductible & out of pocket and not making consistent money as adjunct teaching can be very unpredictable. Six years ago, HCC Southshore hired me as an adjunct to teach a music lit class on campus with the goal of getting the class put online. I now teach multiple sections of the class online for them year round. Five years ago, I was hired full-time at Florida College, and I love the variety of classes that I teach with them from music lit to helping our future music educators. This was also a great blessing with my health insurance. I stopped teaching for Strayer, but about 2 years ago, I was asked to help create & teach a music and culture class for USF online. I've now taught that class for 5 semesters. While one job opportunity ended, I've been very blessed with all of the others. I really enjoy the on-campus teaching at FC during the school year, but also all of the online teaching. I didn't set out to do all of this, but it has been a blessing for me. It does mean that I am teaching year round and on many different school schedules, but the wonderful thing about teaching online is that I can do it from Venice, Italy or Tampa, FL just as easily. These opportunities have allowed me to pursue my travel & living list more than I could ever have thought possible 7 years ago.
There are so many other things that have changed, but I have to mention that the past 7 years have added 2 nephews and a niece that I dearly love, and keep me on my toes! I've been able to see my oldest nephew graduate high school and now work with him as a music education student at FC. My second nephew will be a junior in high school this coming year, and I fully expect to see him graduate in 2 years as well. I'm so thankful that I have been able to be here to see them grow and change, and I love them dearly too!
This date is always hard for me as there are so many ways that cancer has changed my life that could be considered negative, but I have so many blessings to count as well! I am thankful for every day that I have with my family and friends, and while I hope no one else has to go through cancer, I realize that it has given me a different perspective on life and so many things that I can now appreciate as well!
Happy 7 year Cancerversary!
Tuesday, April 2, 2019
Brighter is not always better
The past few months have been very busy with work, traveling, and getting to see family and friends. This February, we celebrated our 25th reunion from Florida College. That does not seem possible as we are still SO YOUNG (at least at heart). It was wonderful to see those that could make it. As so often happens during lecture week, though, I caught a pretty nasty virus. It made me have to stop my chemo & delay it for a week or so.
Over spring break, I had an amazing trip to the Galapagos. It was fascinating to see the animals that are only found there and enjoy walking on and snorkeling around the islands. If you have any desire to do this trip, I strongly encourage you to make it happen. It is definitely worth it! I say that even after I came back with the Ecuadorian bug to beat all bugs. I was horribly sick to my stomach for over a week, and chemo again had to be stopped and delayed.
These delays had me pretty nervous because my February tumor markers had risen a little bit. A Petscan & my bloodwork were done this past Friday, and I met with my oncologist to get the results today. The good news is that there are no new tumors. The bad news is that the 3 that are there (1 in liver & 2 lymph nodes) each got bigger & are shining brighter. The radiation that you are injected with for the petscan makes cancer glow & the brighter it glows, the more active the cancer is being. My CA27-29 tumor markers raised another 10 points proving that they are still a good indicator of what is going on inside.
We are in a bit of a conundrum. My oncologist is looking into whether there are any clinical trials that would be a good fit. There also is concern that the difference may be the breaks. So, barring a great clinical trial option, we are going to give Xeloda another month. Currently, I've been on 2500 mg a day (1 week on / 1 wk off). We are going to try to raise that a bit by alternating 2500 & 3000 mg every other day to see if that would work. After 2 more cycles, we will run the tumor markers again. If the revised dosage can keep me stable or have regression, we will try to stay on it for as long as we can. When we need to change, either next month or later, it will be to a more traditional IV chemo as what I'm on currently is the only true pill chemo option.
Cancer is a tricky beast and for lack of a better description, learns how to work around the medicines that you throw at it. Eventually, each treatment will stop working....you just never know when that point will be. Since mine became active again, I have been going through basically a treatment every 10 months to a year. I did express my concern about this because I have a relatively small amount of cancer compared to many metastatic patients. Some oncologists wait to change medications until the patient has side effects.....I didn't have any liver side effects even when my liver was covered in tumors. My oncologist believes in being a bit more aggressive and changing when it is obvious that the drug isn't able to at a minimum keep things stable. Her goal is to keep as small of a tumor load as possible & possibly get that treatment that will fight it all the way back for a little while or at least give best quality of life for the longest possible time. This strategy fits with my personality and how I want to address things, but it can be a bit scary to watch the available treatments get checked off the list. There are still several options available, don't get me wrong, but watching the list get shorter is still difficult.
I am currently in my off week, but will start the slightly higher schedule on Monday. I would appreciate your good thoughts & prayers that the higher dose will be effective if possible, but if it is not the right drug/amount for this time, that we will know and be able to get me to a medicine that will be more effective. I am so very thankful to have the oncologist that I do and to have so many people who are praying & thinking of me. Even in news that could have been better, I know that I am blessed.
Over spring break, I had an amazing trip to the Galapagos. It was fascinating to see the animals that are only found there and enjoy walking on and snorkeling around the islands. If you have any desire to do this trip, I strongly encourage you to make it happen. It is definitely worth it! I say that even after I came back with the Ecuadorian bug to beat all bugs. I was horribly sick to my stomach for over a week, and chemo again had to be stopped and delayed.
These delays had me pretty nervous because my February tumor markers had risen a little bit. A Petscan & my bloodwork were done this past Friday, and I met with my oncologist to get the results today. The good news is that there are no new tumors. The bad news is that the 3 that are there (1 in liver & 2 lymph nodes) each got bigger & are shining brighter. The radiation that you are injected with for the petscan makes cancer glow & the brighter it glows, the more active the cancer is being. My CA27-29 tumor markers raised another 10 points proving that they are still a good indicator of what is going on inside.
We are in a bit of a conundrum. My oncologist is looking into whether there are any clinical trials that would be a good fit. There also is concern that the difference may be the breaks. So, barring a great clinical trial option, we are going to give Xeloda another month. Currently, I've been on 2500 mg a day (1 week on / 1 wk off). We are going to try to raise that a bit by alternating 2500 & 3000 mg every other day to see if that would work. After 2 more cycles, we will run the tumor markers again. If the revised dosage can keep me stable or have regression, we will try to stay on it for as long as we can. When we need to change, either next month or later, it will be to a more traditional IV chemo as what I'm on currently is the only true pill chemo option.
Cancer is a tricky beast and for lack of a better description, learns how to work around the medicines that you throw at it. Eventually, each treatment will stop working....you just never know when that point will be. Since mine became active again, I have been going through basically a treatment every 10 months to a year. I did express my concern about this because I have a relatively small amount of cancer compared to many metastatic patients. Some oncologists wait to change medications until the patient has side effects.....I didn't have any liver side effects even when my liver was covered in tumors. My oncologist believes in being a bit more aggressive and changing when it is obvious that the drug isn't able to at a minimum keep things stable. Her goal is to keep as small of a tumor load as possible & possibly get that treatment that will fight it all the way back for a little while or at least give best quality of life for the longest possible time. This strategy fits with my personality and how I want to address things, but it can be a bit scary to watch the available treatments get checked off the list. There are still several options available, don't get me wrong, but watching the list get shorter is still difficult.
I am currently in my off week, but will start the slightly higher schedule on Monday. I would appreciate your good thoughts & prayers that the higher dose will be effective if possible, but if it is not the right drug/amount for this time, that we will know and be able to get me to a medicine that will be more effective. I am so very thankful to have the oncologist that I do and to have so many people who are praying & thinking of me. Even in news that could have been better, I know that I am blessed.
Sunday, November 11, 2018
Forward is forward or in my case regression is regression
I have been on my new oral chemo, Xeloda for about 3 months now, and I had a scan last week. The last 2 tumor marker blood tests taken had gotten lower which was a positive sign, but I was still nervous for my appointment on Friday to find out the results. Last scan had showed 2 areas of possible metastasis in the chest wall and spine. The radiologist thought it was mets, but my oncologist wasn't so sure. Either way, those 2 spots were gone. Last scan also showed 2 liver tumors. This one showed a larger liver tumor, but said the 2nd one was part of that not something different. So that is a bit confusing for me to know exactly what is going on, but either way, it did not light up as bright which is good. The 2 lymph nodes near my liver both shrunk and dimmed.
I was a little surprised at how big the liver tumor is. Somehow, I pictured it much smaller than what it is measuring; so, that took me back a little bit, but overall it is still regression. I wish it had knocked it all out already, but I have to be thankful for every bit of progress in the right direction no matter how small that may be.
I take this chemo 1 week on/ 1 week off with pills at breakfast and dinner. It has given me the standard side effects of stomach problems along with hand/foot syndrome. My hands regularly look like they are peeling, like from a sunburn. I am constantly putting on lotion as you can't prevent it happening, but you can hopefully manage the peeling through lotions. I have specific udderly smooth lotion that I've been told to use twice a day, but the ones for the middle of the day do not seem to be cutting it. So, if you have any really good lotion that still has water as its first ingredient, that you'd recommend please let me know. I'm on the hunt for something that I don't have to apply every 45 minutes. I've had a few mouth issues as well, but mostly sensitivity to spices not really sores; so, thankfully, nothing as bad as the last treatment.
I really appreciate all the prayers and good thoughts throughout all of my treatments, and I would ask that you please continue those. Always hoping for regression and knocking those little cancer cells out! Thanks so much!!
Friday, August 17, 2018
Time to Make a Change
Since March, I've been on "borrowed" time using a drug that is not really supposed to work by itself this long into treatment. In May, everything was basically stable; so, we decided to ride it out as long as possible with checking tumor markers every month until doing a PETscan this past Monday. I got the results of that PETscan today, and unfortunately, it is time to make a change.
The lymph nodes were bigger & shining brighter. The liver lesion we'd been watching was shining less bright, but it appears another lesion has appeared. There were also 2 spots that light up that we aren't sure whether they are cancer or not. One of them is at vertebra T10, and my oncologist thinks may just be regular bone marrow activity. The other is in an area of soft tissue near the end of my ribs which could also be inflammation. Both were listed as possible for metastasis, but my oncologist isn't sure. We aren't going to do any more testing for those places at this time, though, because the treatment would be the same either way.
I will be starting an oral chemo called Xeloda. This comes in pill form, and I will take 2 pills with breakfast and 2 with dinner for one week on then one week off as long as the medicine is working, which we hope will be years. This dosing has been found to help keep people from getting side effects and/or help keep them in better control. The side effects for this drug are primarily stomach issues, hand/foot syndrome (where chemo leaks into capillaries and kills tissue causing redness, pain, and peeling), and low white blood count/ higher risk of infection. Starting with this dosing will also provide the ability to go a little higher or lower depending on side effects and cancer response.
My oncologist understands how important being as free as possible to work, travel, live a normal life, etc. is to me, and this option, will be the easiest for that. It is never fun to know there is progression and have to change medicines, but thankfully, I've had a few months to know that this was the next option and prepare for it. I hate that I will be starting it the first week of classes since I don't know what side effects I will or won't get, but that could be a blessing in disguise as well since those first meetings are usually about the syllabi, etc. and not necessarily a lot of "meat" of the class.
Today was also my regular bone building infusion, Zometa, along with needing an iron infusion. The iron one was easy, but the Zometa comes with some fun side effects of flu-like symptoms and bone pain. So, this may be a weekend for me to just hunker down and catch up on netflix or reading until the side effects go away. I think I've said this before, but the weirdest side effect is the bone pain. It feels like something is trying to burrow its way out from the inside of my bones. Needless to say, tylenol & ibuprofen are my close friends this weekend, lol.
Sorry if this is a bit of a debbie-downer blog post this time. Hopefully it doesn't come across too negative or anything, but this is my reality. My oncologist did tell me that she had a patient who had been on this chemo for 6 1/2 years, and I know of a couple of women on a breast cancer board that I belong to that have been on this chemo for 5+ years. So, you never know which treatment might be the magic bullet for you, and I hope this will work as well as possible with as few side effects as possible for as long as possible. Also, I'm so thankful that I was able to do my crazy summer of travel. It feels like such a blessing to have felt that good and been able to enjoy that before having to make this shift in meds.
I'd really appreciate any prayers for this treatment to work and have minimal side effects. Thanks so much, and I hope you have a wonderful weekend!
The lymph nodes were bigger & shining brighter. The liver lesion we'd been watching was shining less bright, but it appears another lesion has appeared. There were also 2 spots that light up that we aren't sure whether they are cancer or not. One of them is at vertebra T10, and my oncologist thinks may just be regular bone marrow activity. The other is in an area of soft tissue near the end of my ribs which could also be inflammation. Both were listed as possible for metastasis, but my oncologist isn't sure. We aren't going to do any more testing for those places at this time, though, because the treatment would be the same either way.
I will be starting an oral chemo called Xeloda. This comes in pill form, and I will take 2 pills with breakfast and 2 with dinner for one week on then one week off as long as the medicine is working, which we hope will be years. This dosing has been found to help keep people from getting side effects and/or help keep them in better control. The side effects for this drug are primarily stomach issues, hand/foot syndrome (where chemo leaks into capillaries and kills tissue causing redness, pain, and peeling), and low white blood count/ higher risk of infection. Starting with this dosing will also provide the ability to go a little higher or lower depending on side effects and cancer response.
My oncologist understands how important being as free as possible to work, travel, live a normal life, etc. is to me, and this option, will be the easiest for that. It is never fun to know there is progression and have to change medicines, but thankfully, I've had a few months to know that this was the next option and prepare for it. I hate that I will be starting it the first week of classes since I don't know what side effects I will or won't get, but that could be a blessing in disguise as well since those first meetings are usually about the syllabi, etc. and not necessarily a lot of "meat" of the class.
Today was also my regular bone building infusion, Zometa, along with needing an iron infusion. The iron one was easy, but the Zometa comes with some fun side effects of flu-like symptoms and bone pain. So, this may be a weekend for me to just hunker down and catch up on netflix or reading until the side effects go away. I think I've said this before, but the weirdest side effect is the bone pain. It feels like something is trying to burrow its way out from the inside of my bones. Needless to say, tylenol & ibuprofen are my close friends this weekend, lol.
Sorry if this is a bit of a debbie-downer blog post this time. Hopefully it doesn't come across too negative or anything, but this is my reality. My oncologist did tell me that she had a patient who had been on this chemo for 6 1/2 years, and I know of a couple of women on a breast cancer board that I belong to that have been on this chemo for 5+ years. So, you never know which treatment might be the magic bullet for you, and I hope this will work as well as possible with as few side effects as possible for as long as possible. Also, I'm so thankful that I was able to do my crazy summer of travel. It feels like such a blessing to have felt that good and been able to enjoy that before having to make this shift in meds.
I'd really appreciate any prayers for this treatment to work and have minimal side effects. Thanks so much, and I hope you have a wonderful weekend!
Friday, May 25, 2018
A little reprieve
Last month, my tumor markers had risen, and we scheduled a petscan for after my Baltics cruise. My oncologist told me at that time that we would definitely be making the change to oral chemo, Xeloda, at my next appointment (which was today). I had asked for prayers that the exemestane would work as well as possible in the meantime to keep things at bay.
The cruise was amazing and one that I would recommend to anyone. I learned so much, and saw so many interesting sites. We arrived home Monday evening, and I had my petscan this past Wednesday. I had spent the past month preparing for the change to a more traditional chemo and had a sense of peace during the scan process. I was ready for whatever this new drug would bring.
Jump to today, and I got a little reprieve. While my tumor markers rose a few points more, the petscan results were mixed and basically stable. The lymph nodes had gotten smaller & less bright on the scan, but the liver lesion had gotten slightly larger and brighter. My oncologist ended up giving me the option of staying on the exemestane (an anti hormonal that I'm currently on) for another few months or doing the switch to Xeloda.
When asked which she would do, she stated that she would stay on the exemestane for the following reasons:
* basically a stable result on the petscan and one that in a clinical trial would not be considered progression or necessitate a medication change
* the longer you can get out of any one drug the better as there are only so many medication options out there
* she has had patients go months in this sort of stable-ish type of pattern
* if there was a cure, she'd have me change quickly, but since all of the medicines available are going to control not necessarily cure, it is better to stick with the one that has really no side effects for as long as possible.
I was worried that I would make a decision based on wanting to do the many trips that I have scheduled for July/early August, but after discussing all of the above with her, I feel very comfortable and happy with the decision to stay on the exemestane for a while. Also, if the current medicine is going to work on only one of the areas (lymph nodes or liver), it is actually better for it to work on the lymph nodes as they are not in a place where we can go in and remove them, but we do have some other options for the liver, such as ablation, if needed in the future. My liver function tests have also decreased to almost normal which is a good sign.
So, I get a little reprieve from the big chemo guns for right now. We will be checking tumor markers every month and scanning every 3 months. If there is a drastic tumor marker change in any month, we would go ahead and scan as quickly as possible. Even if this only gives a month or two more on the easier treatment, it is definitely worth it! I am so appreciative of all those who've prayed for me and this situation, and would ask that you continue to pray send and/or send good thoughts that this medicine will work for as long as possible. I am also so thankful for a doctor that is willing to do what is needed to keep me living as good of a quality of life as possible while always having my best interests at heart. Hope everyone has a wonderful summer!
The cruise was amazing and one that I would recommend to anyone. I learned so much, and saw so many interesting sites. We arrived home Monday evening, and I had my petscan this past Wednesday. I had spent the past month preparing for the change to a more traditional chemo and had a sense of peace during the scan process. I was ready for whatever this new drug would bring.
Jump to today, and I got a little reprieve. While my tumor markers rose a few points more, the petscan results were mixed and basically stable. The lymph nodes had gotten smaller & less bright on the scan, but the liver lesion had gotten slightly larger and brighter. My oncologist ended up giving me the option of staying on the exemestane (an anti hormonal that I'm currently on) for another few months or doing the switch to Xeloda.
When asked which she would do, she stated that she would stay on the exemestane for the following reasons:
* basically a stable result on the petscan and one that in a clinical trial would not be considered progression or necessitate a medication change
* the longer you can get out of any one drug the better as there are only so many medication options out there
* she has had patients go months in this sort of stable-ish type of pattern
* if there was a cure, she'd have me change quickly, but since all of the medicines available are going to control not necessarily cure, it is better to stick with the one that has really no side effects for as long as possible.
I was worried that I would make a decision based on wanting to do the many trips that I have scheduled for July/early August, but after discussing all of the above with her, I feel very comfortable and happy with the decision to stay on the exemestane for a while. Also, if the current medicine is going to work on only one of the areas (lymph nodes or liver), it is actually better for it to work on the lymph nodes as they are not in a place where we can go in and remove them, but we do have some other options for the liver, such as ablation, if needed in the future. My liver function tests have also decreased to almost normal which is a good sign.
So, I get a little reprieve from the big chemo guns for right now. We will be checking tumor markers every month and scanning every 3 months. If there is a drastic tumor marker change in any month, we would go ahead and scan as quickly as possible. Even if this only gives a month or two more on the easier treatment, it is definitely worth it! I am so appreciative of all those who've prayed for me and this situation, and would ask that you continue to pray send and/or send good thoughts that this medicine will work for as long as possible. I am also so thankful for a doctor that is willing to do what is needed to keep me living as good of a quality of life as possible while always having my best interests at heart. Hope everyone has a wonderful summer!
Friday, April 13, 2018
A hiccup, but same basic plan
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!
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!
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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