Where to begin?
My tumor markers have been consistently going back up. So Esplin started me on a new chemo pill called Piqray in addition to my weekly infusions.
That same week, I had scans. May 13th. Esplin called me back the same night to tell me that everything was still stable! I was really surprised!
Had my appointment with him on the 19th. He explained that the fact the markers were going up meant that even though the scans show I'm stable, the cells are more active. He also mentioned that the cells in the bones go into these pockets in the bones and you can't really see them on scansSo I got my infusion along with my monthly Faslodex shots and my 3 month Lupron shot. It hit me a lot earlier than usual and I was down for the count. The next day I'm used to being sick, but this time was worse. The digestive stuff was more frequent and I ended up with a fever Wednesday night. It was back down by the morning. Thursday I'm usually ready to get going again, but this time I was still feeling sick. Digestive issues, headaches, pains all over my body and nauseous. Not to mention that my taste has been worsening the past few weeks. I couldn't even eat ice cream it was so gross.
By Friday I was pretty much back to my normal, but I'm definitely feeling the effects of two chemos vs. one. Oh also, my hair has started to fall out again.
I'm frustrated and I am having a hard time thinking I have to stay on Taxol when it doesn't really seem to be helping much anymore.... Yet, if I go off of it, what will I do?
I'm frustrated that I'm over a year into this and I'm no better than I was. Nothing seems to be working very well and we're checking off the treatments way too fast.
I'm working constantly on Faith in the Savior. Faith that everything will be okay no matter what. It's hard to let go. True Faith is hard. So very hard. Being okay with whatever occurs, knowing it's better than my plan, letting go of control of something that I don't have control of in the first place. I'm trying to practice it and some days or moments, I do better than others.
“Fighting through darkness and despair and pleading for the light is what opened this dispensation. It is what keeps it going, and it is what will keep you going.”
―Elder Jeffrey R. Holland, Created for Greater Things
“If for a while the harder you try, the harder it gets, take heart. So it has been with the best people who ever lived.”
―Elder Jeffrey R. Holland, "The Inconvenient Messiah"
Showing posts with label Faslodex. Show all posts
Showing posts with label Faslodex. Show all posts
Sunday, May 24, 2020
Monday, September 16, 2019
Mixed results
So I had my appointment with Dr. Esplin a week ago. I got my 2 shots of Faslodex in my rear/lower back. Man that smarts!
Then he switched me from Zoladex( the shot for menopause) to Lupron. Lupron also is given in my rear, but now I only have to do that every 3 months.
I also got my month's supply of Affinitor.
On Wednesday, my tumor markers came in. In breast cancer, they are looking at tumor markers CA27.9 and CA15.3. Tumor markers aren't totally reliable, but so far they've done pretty well at letting us know what's going on in me.
Ever since the beginning, my tumor markers have been going up and up and up. This time the CA27.9 came down from 701.2 to 658! That's the first time something positive has come back!
However, the CA15.3 went from 492 to 537.9. So the results are mixed.
It is true, that when a tumor is dying, it breaks down into your blood stream and sometimes they can go up. That's why he doesn't rely too much on them.
I am scheduled for a CT/ bone scan on Sept. 30th. I hope it gives us a good look at what's going on and most especially, I hope it's positive information.
I also met a gal that lives nearby who was diagnosed 4 years ago. She invited 2 others that are 3 and 4 years into this. I asked questions and listened. It was a weird feeling, just sitting with these strangers, yet there's so much understanding there. I didn't want to be there cause I didn't want to be in this "club." I don't know how long it will take me to accept my new life and what's to come because of it. I just know I'm not there yet.
Then he switched me from Zoladex( the shot for menopause) to Lupron. Lupron also is given in my rear, but now I only have to do that every 3 months.
I also got my month's supply of Affinitor.
On Wednesday, my tumor markers came in. In breast cancer, they are looking at tumor markers CA27.9 and CA15.3. Tumor markers aren't totally reliable, but so far they've done pretty well at letting us know what's going on in me.
Ever since the beginning, my tumor markers have been going up and up and up. This time the CA27.9 came down from 701.2 to 658! That's the first time something positive has come back!
However, the CA15.3 went from 492 to 537.9. So the results are mixed.
It is true, that when a tumor is dying, it breaks down into your blood stream and sometimes they can go up. That's why he doesn't rely too much on them.
I am scheduled for a CT/ bone scan on Sept. 30th. I hope it gives us a good look at what's going on and most especially, I hope it's positive information.
I also met a gal that lives nearby who was diagnosed 4 years ago. She invited 2 others that are 3 and 4 years into this. I asked questions and listened. It was a weird feeling, just sitting with these strangers, yet there's so much understanding there. I didn't want to be there cause I didn't want to be in this "club." I don't know how long it will take me to accept my new life and what's to come because of it. I just know I'm not there yet.
Tuesday, August 27, 2019
Onto treatment number 2
There's so much that has happened in the past month that there's no way I could possibly write it all down.
The beginning of August, Kevin and I went on an anniversary trip to the Dominican Republic. We have always planned on doing a 20th anniversary trip, but with this being our 15th and not knowing what will be in 5 years, we are trying to have an attitude of "just do it now." The DR was the cheapest place for a last minute trip.
It was so nice to be with just Kevin for 6 days and we did a lot of resting and a little recreating.
Our trip was dampened by the death of our cute pup, Misty. She was hit by a car on our actual anniversary and died soon after. This made it hard to be away from home and we ended up calling more often than we would have. That made it kind of hard for me to really let go and relax, but it was still a great trip and time together.
I started to feel a little picked on with all that has happened this year. My family needs a break so badly and even when we purposely take one, we're not really given a break. I don't want to say that we can't handle anymore, because I'm scared of what else may happen to prove me wrong. With my mom's death, my cancer, Misty's death and many other things, this year has been awful and my little family just needs to be able to rest.
Two weeks ago, I had an appointment. Dr Esplin told me that he would wait to get my blood work back to see what my tumor markers were. If they were steady or even just a bit higher, we would stay the course, but if they were higher, we would have to change.
Well, they were higher.....sky higher. This means there's progression of my tumors and my treatments have failed.
My new treatment plan is a new chemo called Afinitor (everlimus) which is a pill I take everyday without breaks.
Once a month I get shots called Faslodex (2 shots in the tush) which is a kind of chemo that is basically an estrogen blocker.
I also get Zoladex shots once a month which puts me and keeps me in menopause.
Every 3 months I get Zometa, which is a bone strengthener.
I was handling Ibrance so well, and I've been on Afinitor for one week and it's been awful.
I have swirly head, extreme fatigue, heartburn, constipation and diarrhea. I get hungry, but no much tastes good. Hot flashes....oh the hot flashes. So far I haven't had the mouth ulcers that come with it. It can also cause weight gain or weight loss. I told Dr. Esplin that I would like to lose weight and he said he didn't want me to lose it with this cause it can go too far. To be honest, I figure I'll face that if and when it happens. I've got the one shots trying to make me gain weight so maybe they'll balance each other out?
It's been rough emotionally and I've gone through all the familiar fears of hopelessness that nothing is going to work for me. Scared that if something does work for me the side effects are going to make me so miserable. I'm scared for my kids, Kevin and myself. I received another priesthood blessing, and that was comforting. I wish I could do better at keeping that peace with me.
The beginning of August, Kevin and I went on an anniversary trip to the Dominican Republic. We have always planned on doing a 20th anniversary trip, but with this being our 15th and not knowing what will be in 5 years, we are trying to have an attitude of "just do it now." The DR was the cheapest place for a last minute trip.
It was so nice to be with just Kevin for 6 days and we did a lot of resting and a little recreating.
Our trip was dampened by the death of our cute pup, Misty. She was hit by a car on our actual anniversary and died soon after. This made it hard to be away from home and we ended up calling more often than we would have. That made it kind of hard for me to really let go and relax, but it was still a great trip and time together.
I started to feel a little picked on with all that has happened this year. My family needs a break so badly and even when we purposely take one, we're not really given a break. I don't want to say that we can't handle anymore, because I'm scared of what else may happen to prove me wrong. With my mom's death, my cancer, Misty's death and many other things, this year has been awful and my little family just needs to be able to rest.
Two weeks ago, I had an appointment. Dr Esplin told me that he would wait to get my blood work back to see what my tumor markers were. If they were steady or even just a bit higher, we would stay the course, but if they were higher, we would have to change.
Well, they were higher.....sky higher. This means there's progression of my tumors and my treatments have failed.
My new treatment plan is a new chemo called Afinitor (everlimus) which is a pill I take everyday without breaks.
Once a month I get shots called Faslodex (2 shots in the tush) which is a kind of chemo that is basically an estrogen blocker.
I also get Zoladex shots once a month which puts me and keeps me in menopause.
Every 3 months I get Zometa, which is a bone strengthener.
I was handling Ibrance so well, and I've been on Afinitor for one week and it's been awful.
I have swirly head, extreme fatigue, heartburn, constipation and diarrhea. I get hungry, but no much tastes good. Hot flashes....oh the hot flashes. So far I haven't had the mouth ulcers that come with it. It can also cause weight gain or weight loss. I told Dr. Esplin that I would like to lose weight and he said he didn't want me to lose it with this cause it can go too far. To be honest, I figure I'll face that if and when it happens. I've got the one shots trying to make me gain weight so maybe they'll balance each other out?
It's been rough emotionally and I've gone through all the familiar fears of hopelessness that nothing is going to work for me. Scared that if something does work for me the side effects are going to make me so miserable. I'm scared for my kids, Kevin and myself. I received another priesthood blessing, and that was comforting. I wish I could do better at keeping that peace with me.
Wednesday, July 24, 2019
no words
I haven't written much. Been feeling too much with no words.
My mental health is not in a good place these days. I'm still keeping my head above water, but I feel so so sad and so so scared. I don't seem to be all there with anything we do. Any activity with Kevin and the girls and I feel like there's a part of me somewhere else. I don't seem to be able to enjoy things to the fullest and I hate it.
My scan results weren't all that bad, I mean there was some positive spots, but I think even though I won't admit it, I was hoping for a miracle. I told everyone I was just hoping for at least "stable" and I think I would have been okay with that, but secretly, I was hoping my Doctor would call and say "Oh my gosh! I've never seen such quick improvement"
I went in for my appt. last week. He showed me my scans which looked pretty much like the first ones. My liver tumor isn't quite as active, but I do have some new ones under my arms and in my bones.
I got my first shot of Zoladex. Man it hurt. It's a shot, but it inserts an implant to release the drug into my system, therefore bigger needle in my gut. OUCH! This will shut down my ovaries. Yes I think I've started having hot flashes, but it's so dang hot anyway, that it's hard to tell.
After a month, I will get my first shot of Faslodex which is another kind of hormone blocker. I will then stop taking Tamoxifen. I will continue with ibrance.
Once you start a certain line of treatment, if it doesn't work, you can't go back to it, so he wants to make sure we get all we can out of the ibrance and make sure that it's not the reason I'm not seeing better results. Hopefully it's the estrogen.
Dr Esplin again told me about how they took 3 tumors from the same person, dissected each one into pieces and examined them. Each tumor was entirely different from the other and not only that, but within each tumor, the different layers had mutated and were entirely different from itself as a whole.
It makes me feel so hopeless. Cancer is so very wicked. How can doctors or drugs keep up with the rapid mutations? My mind imagines some kind of horror creature that you just can't get rid of, it multiplies and gets stronger and stronger until it literally eats me alive.
I also asked if I could ride horses. He told me he can't tell me not to, but if I did it should only be a very old slow horse and only a walk. Trots, etc. could break my bones. (I'm wondering if this is the month I get my next shot of bone strengthener too) So I can't do that, or jump on the tramp with the girls. Hopefully, someday, this beast or beasts will die and my bones can gain back their strength? Although, I know that menopause can cause weakness in bones, like osteoporosis. sigh
For now, I'm struggling with fear and sadness. Every time I think of my kids growing up, graduations, missions, weddings and grandchildren, or even just comments about the future, I wonder if it's possible to be here for at least one of them? Will I even see Kinli, my little 7 year old reach high school? It tears me apart and I can't come to terms with it.
The emotions that come with facing my mortality and what I may have to endure before it's over are too much for me. I'm only 4 months into this and I feel like the women and men who do this have much more grit than I have and I don't think I'm up to the task.
My mental health is not in a good place these days. I'm still keeping my head above water, but I feel so so sad and so so scared. I don't seem to be all there with anything we do. Any activity with Kevin and the girls and I feel like there's a part of me somewhere else. I don't seem to be able to enjoy things to the fullest and I hate it.
My scan results weren't all that bad, I mean there was some positive spots, but I think even though I won't admit it, I was hoping for a miracle. I told everyone I was just hoping for at least "stable" and I think I would have been okay with that, but secretly, I was hoping my Doctor would call and say "Oh my gosh! I've never seen such quick improvement"
I went in for my appt. last week. He showed me my scans which looked pretty much like the first ones. My liver tumor isn't quite as active, but I do have some new ones under my arms and in my bones.
I got my first shot of Zoladex. Man it hurt. It's a shot, but it inserts an implant to release the drug into my system, therefore bigger needle in my gut. OUCH! This will shut down my ovaries. Yes I think I've started having hot flashes, but it's so dang hot anyway, that it's hard to tell.
After a month, I will get my first shot of Faslodex which is another kind of hormone blocker. I will then stop taking Tamoxifen. I will continue with ibrance.
Once you start a certain line of treatment, if it doesn't work, you can't go back to it, so he wants to make sure we get all we can out of the ibrance and make sure that it's not the reason I'm not seeing better results. Hopefully it's the estrogen.
Dr Esplin again told me about how they took 3 tumors from the same person, dissected each one into pieces and examined them. Each tumor was entirely different from the other and not only that, but within each tumor, the different layers had mutated and were entirely different from itself as a whole.
It makes me feel so hopeless. Cancer is so very wicked. How can doctors or drugs keep up with the rapid mutations? My mind imagines some kind of horror creature that you just can't get rid of, it multiplies and gets stronger and stronger until it literally eats me alive.
I also asked if I could ride horses. He told me he can't tell me not to, but if I did it should only be a very old slow horse and only a walk. Trots, etc. could break my bones. (I'm wondering if this is the month I get my next shot of bone strengthener too) So I can't do that, or jump on the tramp with the girls. Hopefully, someday, this beast or beasts will die and my bones can gain back their strength? Although, I know that menopause can cause weakness in bones, like osteoporosis. sigh
For now, I'm struggling with fear and sadness. Every time I think of my kids growing up, graduations, missions, weddings and grandchildren, or even just comments about the future, I wonder if it's possible to be here for at least one of them? Will I even see Kinli, my little 7 year old reach high school? It tears me apart and I can't come to terms with it.
The emotions that come with facing my mortality and what I may have to endure before it's over are too much for me. I'm only 4 months into this and I feel like the women and men who do this have much more grit than I have and I don't think I'm up to the task.
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