Next steps

Posted by Denise @denisestlouie, 3 days ago

I'm going to start maintenance therapy in January. I'm not a candidate for immunotherapies at this point for 2 reasons. The first, I have an autoimmune disease and immunotherapy can set autoimmune diseases into a flare. Second, I had my tumor analyzed at CARIS. It indicated the first line immunotherapies would not work for my tumor make-up. But I'm HER2+. That is a bad thing, except in 1999 the FDA approved treatments to target HER2 to turn it into a weapon to fight cancer. That was for breast cancers. Today gyneological cancers that are HER2+ can use those drugs too.

To be able to receive the maintenance therapy I have steps I have to follow before starting. December 17 CT scan of chest, abdomin and pelvis. Dec 30 echocardiogram, January 6 physical exam. Plus I still have to get two more blood test for the last chemotherapy. If all these things come back clean, no disease I'll start maintenance Jan 20.

I feel blessed to have a maintenance therapy available to me. I'm really concerned about a recurrence because of the type of Cancer that I have. I feel like having this maintenance will give me extended coverage for next 13 months. I just hope I stay cancer-free. And I also think that the therapy will continue to hunt down any cells that still live in me and dismantle them. I just feel like this is my best hope for living a long, healthy life. '

I've come a long way in the past 6 months. I've stopped trolling the Internet for answers, my sleep has been amazing. I had insomnia for decades. I didn't even recognize what I was doing as insomnia. I physically feel great. I know that's weird I just completed 6 cycles of chemotherapy and I feel as good even better than I did before therapy. My mental health is pretty stable at the moment. I'm still worried about my health and future, but I'm not obsessing over it. It feels more matter of fact. Resigned and not desperate or doomed..

I've have worked so hard on being this way. I chose my medical team. Some through referral others by choice. My medical team consist of an oncologist, IBD gastroenterologist and clinic, therapist, holistic Doctor, cardiologist, dentist, optometologist, optometrist, personal trainer and I'm including my hairdresser because she is supporting me all the way through my hair loss journey.

I am doing all this because I've read about the benefits I would receive if I took a holistic approach to my health and I'm in a position to finance this. I realize I'm blessed.

Writing is therapeutic for me. I have a need to put my thoughts in writing. It think it help me organize my brain so thoughts don't fly around colliding into each other.

Yesterday was was the third day following my last infusion. I purposely scheduled a training session for that day. The third day is the day I feel the most inflammation, joint stiffness and fatigue. By scheduling a training session on that day I force myself to use my body in a riggerous way.

Im still mad about cancer, but im not enraged anymore. I love having action steps. I do well with a plan i understand. I also started asking questions and what happens should cancer return. Im creating a plan B.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Your journey is quite incredible. It explains where you’ve been and the plan ahead. It seems encouraging to me. Please forgive me, but do you mind saying how you knew you had cancer?

Why do you think your sleep health has improved?

Did you drive during your treatments?

Best of luck on your CT scans, echocardiogram and physical! They will go well. I will say prayers anyway,

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@celia16

Your journey is quite incredible. It explains where you’ve been and the plan ahead. It seems encouraging to me. Please forgive me, but do you mind saying how you knew you had cancer?

Why do you think your sleep health has improved?

Did you drive during your treatments?

Best of luck on your CT scans, echocardiogram and physical! They will go well. I will say prayers anyway,

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I started spotting. I call my primary first day it happened. She referred me to a GYN. It took a month to get into the GYN. The GYN did a biopsy. That's when I learned I had cancer. It's not in the family. I'm just the lucky one.

I did drive during treatments. I didn't have many physically bad day.

I started having sleep issues in 2020. I was traveling for work every week and sleep was difficult. When I stopped traveling I still couldn't fall asleep plus my husband was a horrible snorer. I would take ibuprofen just before bed and that relaxed me enough to sleep. After a divorce my daughter and I moved into the house where I live now. I just couldn't stop thinking and sometimes I would be up most the night.

I've been working on sleep for about 2 1/2 years. I've been in therapy trying to reduce my anxiety. It helped but I still have sleepless nights. I'm not completely sure why I'm sleeping well now. Maybe I'm just exhausted from treatments or the anti anxiety meds I started taking have helped. I going to bed and falling asleep and staying asleep. It's awesome.

Last night I did turn to the Internet again. I don't know why. There is nothing know for me to learn. Old habit I guess.

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@denisestlouie

I started spotting. I call my primary first day it happened. She referred me to a GYN. It took a month to get into the GYN. The GYN did a biopsy. That's when I learned I had cancer. It's not in the family. I'm just the lucky one.

I did drive during treatments. I didn't have many physically bad day.

I started having sleep issues in 2020. I was traveling for work every week and sleep was difficult. When I stopped traveling I still couldn't fall asleep plus my husband was a horrible snorer. I would take ibuprofen just before bed and that relaxed me enough to sleep. After a divorce my daughter and I moved into the house where I live now. I just couldn't stop thinking and sometimes I would be up most the night.

I've been working on sleep for about 2 1/2 years. I've been in therapy trying to reduce my anxiety. It helped but I still have sleepless nights. I'm not completely sure why I'm sleeping well now. Maybe I'm just exhausted from treatments or the anti anxiety meds I started taking have helped. I going to bed and falling asleep and staying asleep. It's awesome.

Last night I did turn to the Internet again. I don't know why. There is nothing know for me to learn. Old habit I guess.

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I see. I’ve considered an anti anxiety med, actually have a prescription, but wanted to avoid if I could. I read that menopause can cause sleep issues. Idk. Mine is improving.

That’s amazing that you felt well during treatments. Did you take off work?

I have a scheduled gyn appointment next week. I’m a little nervous. I know some things aren’t detected by a PAP. Trying to be observant. I can understand why this might seem surreal.

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@celia16

I see. I’ve considered an anti anxiety med, actually have a prescription, but wanted to avoid if I could. I read that menopause can cause sleep issues. Idk. Mine is improving.

That’s amazing that you felt well during treatments. Did you take off work?

I have a scheduled gyn appointment next week. I’m a little nervous. I know some things aren’t detected by a PAP. Trying to be observant. I can understand why this might seem surreal.

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I did and didn't take off work. I'm self-employed with a mature book of business and because of advanced in video and e apps during Covid I didn't go to work often since June when I was diagnosed. I am very angry. I can't shake it and my clients don't need to see me this way.

I believe I felt good through treatment because of the way I've been eating. I'm working with a holistic doctor. He is all about getting the body filled with proper nutrition and making sure any vitamin and mineral deficiencies are being addressed. The oncologist is all in board and encourages me to keep this up.

This is the second time I've taken anti anxiety meds. The first time was Lexapro. I took it in 2022 for about 8 months. I don't think it was effective and looking back now I know it wasn't. This time I'm taking buspirone. It's doing the trick. I feel more like my old self.

I understand trying to do this without additional meds, but the way I see it is I was suffering emotionally and that's as bad as suffering from other chronic pain.

I see sleep has been difficult for both us tonight. Mine was caused by my significant other who tonight was a prick and made all kinds of snoring noise. I kicked out of the room and he screamed like a baby for about 20 minutes. I don't care. I own this house he just lives here. If he doesn't like sleeping in another room he can get his own place, but he won't.

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@denisestlouie

I did and didn't take off work. I'm self-employed with a mature book of business and because of advanced in video and e apps during Covid I didn't go to work often since June when I was diagnosed. I am very angry. I can't shake it and my clients don't need to see me this way.

I believe I felt good through treatment because of the way I've been eating. I'm working with a holistic doctor. He is all about getting the body filled with proper nutrition and making sure any vitamin and mineral deficiencies are being addressed. The oncologist is all in board and encourages me to keep this up.

This is the second time I've taken anti anxiety meds. The first time was Lexapro. I took it in 2022 for about 8 months. I don't think it was effective and looking back now I know it wasn't. This time I'm taking buspirone. It's doing the trick. I feel more like my old self.

I understand trying to do this without additional meds, but the way I see it is I was suffering emotionally and that's as bad as suffering from other chronic pain.

I see sleep has been difficult for both us tonight. Mine was caused by my significant other who tonight was a prick and made all kinds of snoring noise. I kicked out of the room and he screamed like a baby for about 20 minutes. I don't care. I own this house he just lives here. If he doesn't like sleeping in another room he can get his own place, but he won't.

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I understand the anger. Perfectly understandable. It’s fortunate you have armed yourself with coping tools.

Yes, my prescription is for Lexapro. I never started it. I got hung up on a fear it would inhibit my orgasms. My doctor says that’s not that common but I can’t risk it. Certain things I value in my life right now and I’m firm on that. Treating emotional pain is extremely important, so I would treat with some med, if I needed it. Especially, if I was facing a major challenge as you are amazingly doing. I’ll note the one that’s helped you,

If your significant other gets a cpap, that noise will stop. Was he tested? Hope you can keep getting your rest.

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@denisestlouie - you are amazing, Thank You for sharing your journey! My journey is just starting, how did you find your holistic doctor? What questions did you ask to find him/her? I realize nutrition is important and want to make sure I’m doing the best I can.
Thank You
God Bless

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@paz1956

@denisestlouie - you are amazing, Thank You for sharing your journey! My journey is just starting, how did you find your holistic doctor? What questions did you ask to find him/her? I realize nutrition is important and want to make sure I’m doing the best I can.
Thank You
God Bless

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I did a Internet search. My criteria was the holistic doctor also needed to be a medical doctor. The doctor I am with isn't fancy. He's just very passionate about educating his patients.

I also read a lot before I made the decision to see a functional doctor. I use these interchangeably but I'm not really sure if they are the same. But both believe in root cause and patient specifical approach.

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@denisestlouie

I did a Internet search. My criteria was the holistic doctor also needed to be a medical doctor. The doctor I am with isn't fancy. He's just very passionate about educating his patients.

I also read a lot before I made the decision to see a functional doctor. I use these interchangeably but I'm not really sure if they are the same. But both believe in root cause and patient specifical approach.

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Thank You!

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@denisestlouie

I did a Internet search. My criteria was the holistic doctor also needed to be a medical doctor. The doctor I am with isn't fancy. He's just very passionate about educating his patients.

I also read a lot before I made the decision to see a functional doctor. I use these interchangeably but I'm not really sure if they are the same. But both believe in root cause and patient specifical approach.

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Hello Denise. I’m glad to hear that you found a good holistic doctor. I’ve also been searching for help as I’ve been dealing with gastrointestinal (GI) issues since my hysterectomy early last year. It’s been really difficult, especially since I have a child at home, and I need to feel better.
I’ve consulted with at least three GI specialists from reputable institutions, but none have been able to identify the cause of my stomach pain and dyspepsia. I have an appointment with a naturopathic doctor this Friday, and I’m hoping he can help me figure out what’s wrong so that I can finally find some relief. Take care.

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@angierivas1

Hello Denise. I’m glad to hear that you found a good holistic doctor. I’ve also been searching for help as I’ve been dealing with gastrointestinal (GI) issues since my hysterectomy early last year. It’s been really difficult, especially since I have a child at home, and I need to feel better.
I’ve consulted with at least three GI specialists from reputable institutions, but none have been able to identify the cause of my stomach pain and dyspepsia. I have an appointment with a naturopathic doctor this Friday, and I’m hoping he can help me figure out what’s wrong so that I can finally find some relief. Take care.

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Sometimes that's our only option.

You will be surprised at how in-depth the intake process is.

I guarantee recommendations of some type of dietary change will be part of the process.

Anyway eating better has made me feel better.

I hope this is the one!

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