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Thanking God for NED - With prayer took Ibrance, Letrozole, Lupron, & Xgeva (and some supplements like Tumeric)

Hi everyone,

I wanted to start my own post because I didn't want to take up more of Susan's NED post with my stories and replies to others.

I am a VERY private person. But since being diagnosed with cancer, I only share this story to help others....or even one person.

Here is my story....Part I.....for now

I was diagnosed with stage IV terminal metastatic cancer on 12/20/16, Christmas week. I am a wife and the proud mother of a 4 year old son.

I went to the doctor more than most people over the course of 6 years before the diagnosis (often, once every 2 months) because of pain; but the doctor didn't run the right tests in order to look further into my pain. Instead, she labeled my pain as Fibromyalgia. I just kept coming back, feeling hopeless and stupid that the doctor wasn't finding anything. My husband (I didn't know) felt I didn't have much wrong with me since the doctor didn't find anything. She was just a very bad doctor in so many ways...but I trusted her.

Prior to my diagnosis I had several MRI's over the course of two years and yearly mammograms, the last one in March before the Christmas diagnosis.

I also had a woman's Gynocologist (and baby doctor) do a manual breast exam in late September during my pap exam. She didn't feel anything either.

Once I moved from a smaller town to a larger town on 9/1/2016, I saw a new general doctor. As a result of my insistence (and I mean insistence!) to look further into my pain and existing medication, the doctor ran a full panel of blood tests and found that my blood tests showed that I most likely had a serious disease of some kind. After several different additional tests and a more extensive mammogram with a doctor-ordered ultrasound near the underarm and around the periphery, the tumors were discovered. They were biopsied the next day. They were found to be breast cancer. Succeeding tests and biopsies showed that the cancer had spread to my neck, entire lymphatic system, suspected ovaries (but they were not sure...we think they were my fibroids now), my breast, and throughout every one of my bones within the marrow. The doctor's said that the cancer had spread too far for any type of surgery. They explained that they could only prolong life with some promising new drugs. The drugs ability to work on each person's body differ. Some people are able to defer having the cancer spread for some time and others react differently. They of course told me that the first and most effective drug wears off, you try a new drug.

I also found out (at the same time) that I had Parathyroid tumors (benign). They can be removed very quickly, but once the surgeons found out that I was in stage IV cancer, they refused to do the surgery because they did not want to interfere with the beginning (start) of cancer treatments.

Last Christmas was pretty hard....as it was for many who are on this site.

I had to start living with a new normal after the shock wore off and started asking God to help me to just get through the day.

I bought a little GoPro to ensure I had something to make video recordings on for my son. I started to plan a Disneyland trip for my son. I also started to pray that the Lord would help me move forward. For a while life was unbearable. All I could do was cry throughout January. I started to work into the "acceptance" phase and I read a lot of blogs of what other women were going through. That really depressed me more.

I fought with my doctors (against insurance) to be put on Ibrance even though I wasn't in menopause. So I was put into an early menopause by my doctors and then we got approval for Ibrance and letrozole combo. We used Lupron to keep me in menopause and also keep the estrogen away because my cancer was feeding off of the estrogen.

Ever since I have been in horrible hot sweats (10 months now).

I also found out months later that much of my pain was coming from "Advanced Disc Degenerative Disease" in my spine and discs. Three discs were out of place and disc material was pressing on one of the major nerves...which pretty much kept me in intense pain all the time...and leg pain...and feet pain that made it hard to walk.

I was also bone on bone in my knee from 3 knee surgeries.

So, I was basically a mess.

......Part II later

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PART II....

This was my letter to my family and friends on September 12th of this year with a few personal items taken out...

The letter below comes months after reading a couple of ladies stories on how they handled terminal cancer as Christians. That is what helped me get in the right frame of mind.

Once January and February had passed...March was much easier for me.

Again...I am a VERY PRIVATE person. This is shared with you in case it helps one person.

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Dear Family & Friends,

Praise God!!! I want to thank you all very much for praying for my metastatic breast cancer.

Thank you for the elders and pastors at my church for praying over me twice for healing.

Today has been better than Christmas.

I first want to say that I’m praying for all of those in Texas, Florida, and other states, Caribbean, California fires, and all others that are going through horrific struggles that I can’t even begin to relate to losing all that they have. It is really beyond my comprehension. I pray that the Lord is bringing compassion, love, and peace to each one of them! I feel humble at this point knowing how blessed I am.

I wanted to tell you about my new PET/CT scan from this last Friday (8th).

I went over to the PET/CT center today (Monday) to get the printed results.

This is what the results said at the very end:

“No residual active local or metastatic disease is apparent”

That means no sign of cancer.

Psalms 30:2 “Oh Lord my God, I called to you for help and you healed me”

I have attached my PET/CT scan for all of you so that you have the exact information I do.

Believe me, this scan is very different from the one I had last Christmas season and of course much better than the one I had at the end of this last May.

Complete answer to prayer!!! I want to make it clear to everyone that this is all God.

THANK YOU GOD!! Thank you for healing me Jesus.

I will tell you that after I was diagnosed I had to learn a lot about “healing.” I’ve grown up in church, and know my Bible pretty well. I grew up in a conservative church that didn’t primarily focus on healing. So, like many people, I had never had to focus on what the Bible says about healing and faith. The kind of faith that goes way beyond my faith that God is alive and working in our lives. The kind of faith that says God will heal me.

At the bottom of this email I have shared some of the verses that I had to focus on. There are hundreds. It would take a lot of time to tell you what I’ve learned, but write me if you want to know more.

Here are the doctor facts since I’ve already received one question from someone..

• A lot of people on the new hormonal drugs like Ibrance are getting these types of results, and many have had reoccurrence of cancer later on.

• Many (including doctor I’m seeing this Thursday) will say that the cancer can come back quick if I go off of estrogen blockers.

• The Oncologist will want to put me on basic Tamoxifen treatment to keep my estrogen blocked. But I’m going to try to say no. We’ll see what she will say on Thursday morning meeting and I’ll decide.

• I am going off the chemotherapy Ibrance and Letrozole for sure at this point as well as the Lupron shots to block estrogen.

Special Notes:

1. I am still in a lot of pain...very intense. Can hardly walk when I get up and have done too much walking or sitting sometimes. But that is my “Advanced Disc Degenerative Disease” in my back where 3 discs are out of place and disc material is pressing on my nerves…literally. So, this is what I will focus on next.

2. A BIG THANK YOU goes out to all the wonderful doctors at the “Norman Parathyroid Center” in Tampa, FL. They took out my 3 (three) Parathyroid tumors (always benign usually) this last July 12th – 2 months ago. The doctors were wonderful. I can’t say enough great things about them; my doctor walked me through the whole entire issue from the time I was diagnosed with breast cancer through the post-operative weeks after my surgery. Thank you!!!! At least that part of my health problem is over...except for taking lots of calcium now.

a. If anyone you know has Calcium levels on the high side and they are fatigued or have some other health issues, please have them get their parathyroid hormone levels checked. They too could have Parathyroid tumors.

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Just some of the verses that I have read and focused on…there are hundreds more.

o Psalms 143:11 “For your name’s sake, O Lord , preserve my life, in your righteousness bring me out of trouble.”

o Psalms 119:88 “Preserve my life according to your love and I will obey the statutes of your mouth.”

o Jeremiah 30:17 “But I will restore you to health and heal your wounds declares the Lord…”

o Luke: 1:45“Blessed is she who has believed that what the Lord has said to her will be accomplished.”

o Psalm 6:2 “Be Merciful to me Lord for I am faint. Oh Lord heal me, for my bones are in agony.”

o James 5:15…”And the prayer offered in faith will make the sick person well…therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective.”

o Exodus 15:26 “If you listen carefully to the voice of the Lord your God and do what is right in his eyes, If you pay attention to his commands and keep all of his decrees, I will not bring on you any of the diseases I brought on the Egyptians, for I am the Lord who heals you.

o 1 Peter 2:24 “…by his stripes you have been healed”

o Romans 4:20-21 “He did not waver at the promise of God through unbelief, but was strengthened in faith, giving glory to God, and being fully convinced that what He had promised He was also able to perform.”

Luke 18:1 “Then Jesus told the disciples a parable to show them that they should always pray and never give up.”

The link below is to the song “Oh My Soul” from Casting Crowns and how the song was inspired by the lead singer.

It is a special song to me for many reasons. It also mentions “dry bones” which always meant a lot to me since my cancer was destroying all of my bones.

This song will bless you today as they have blessed me...

(Oh My Soul Song)

(Oh My Soul Story)

God Bless...

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Thank you for sharing especially the part about your faith to God’s grace.

I am also a Christian.

I only started ibrance for the 1st cycle but due to very low blood count, it was suspended for 2 weeks after treatment of 14 days. 1st cycle seemed not smooth at all. However, lately I am learning a lot regarding some natural treatment alternatives. I am taking Fucoidan, Turmeric, trying Gerson (the juicing part). I have started doing one hour walk every morning. I let myself exposure to sunshine without any sun screen.

Lately my CA15.3 dropped 20%. I am quite happy with it. Maybe partially ibrance, partially my own efforts on new way of life.

God did not create ibrance but the nature. I believe the cure is already there - peace of mind, joyful heart, healthy food, balanced life, love yourself and others...etc

Congrats to your NED! Keep on!

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Thanks Sheung,

Keep going with the Ibrance. In the beginning, it is normal to be off of it for 2 weeks. I was off of it for two weeks between every bottle for most of my 7 months.

Blessings,

Kim

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You have no idea the strength you provided me with today! Thank you for posting your intermost thoughts and fears. I think I can say we all feel somewhat the same. Thank you and may God continue to bless you!

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JulSoul,

Thank you so much for your reply!!

Hang in there and seek God's help.

The story in between part 1 and part 2 was several months of taking drugs that didn't make me feel well. I didn't want to take the drugs anymore.

But I just kept looking forward to the days I had a rest period from Ibrance (the time it took for my white blood cell count to go back up).

I kept going when on the days I wanted to give up.

I would say "Thank You Jesus for Healing Me" as a respectful belief that Jesus was going to heal me.

God Bless,

sweeetk

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Thank you for sharing, as a newly diagnosed person it helps to read this. I'm sorry you're still in pain but so excited you're NED! You're in my prayers!

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I just want to thank you so much for sharing your story. You have given me so much hope. Instinctively, I turned this battle over to God when I was diagnosed on October 10, 2017. Our stories are so similar in terms of seeking medical help for so long and having to move before finally being diagnosed. I'd gotten it into my head that nothing like this happens to anyone else. I felt so cheated of the opportunity to treat this at an earlier stage. I am overjoyed that you responded well to treatment. I'm on the same medications but most of all I will continue to hold on to all the good promises that God has made His children.

Continue being blessed and thank you,

Deslyn Akinpelu

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Please make part two. This is very similar to my story !!

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I did put my Part II above...

Blessings.

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sweetk,

Your post is so moving and inspirational! Thank you! I always say, “With God ALL things are possible.” We must believe it and live it!

That’s what we call Faith. We here, especially need that.

The Bible says that ‘ Faith is the substance of things hoped for, the evidence of things not seen”.(Hebrews)

So, we need to have Faith that our treatments will work even though we may not see the “evidence” right at this moment. It’s in God’s hands and God’s time, not ours.

Thanks for writing sweetk! Keep the faith and continue to make progress be it fast or slow.

God bless you. Kats2

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Kats,

Thank you for your reply!!!

Yes! You are so right!

It is the hardest thing to do...harder than anything I ever did...

It was to believe and have faith that God could heal me if I as a believer in Christ followed his Word...specifically about healing.

It is definitely in God's hands....

For others on this site, I should say that it is not just something we just toss up a prayer about, but the Lord provides us with so many verses in the Bible about healing for those who follow Him.

No matter where someone is on the road to believing and knowing God...start calling out to Him and find a good Christian church. Without Him, I don't know how anyone could fight cancer. It is the worst thing I have ever dealt with...and I've dealt with a lot.

Blessings,

Kim

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OK everyone....I want to share something that I read during the early days of my diagnosis. It helped me get through the beginning stages.

But I hesitated until now! It is the story of Dodie Osteen.

LET ME BE VERY CLEAR before I give you this link. I AM NOT a follower of Joel Osteen. I don't care for the type of sermons he preaches or his books. I do believe he shares a watered down gospel. I will tell you that I learned how his father preached very differently. So, when a friend of mine wanted me to read his mother's book from 1986 on how she was healed of cancer...I was totally hesitant. But I'm glad I did! Dodie Osteen and her husband lived a very different life than their son Joel. Enough said about Joel.

In the first 2-3 months, Dodie's book led me down the right path on how to keep my mind focused. Dodie wrote it in 1986 I believe (I was graduating high school). Here is the link to a .pfd format of the book.

google.com/search?q=healed+...

She is now 82, and still cancer free. She is not the only one that has had this type of a healing. So, I was very interested to learn whatever I could. The hardest lesson was to forgive those who I was mad at. Boy was that hard.

I read another book first called "Healed by The Word" that is not available in print at this time. I wish it was because it really helped me as well. Maybe I'll ask the author about it.

Blessings,

Kim

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Hi Kim,

Have you looked at Amazon in their “Out of Print Book “section? I’ve found several out-of-Print books there. They may be 2nd hand, or slightly used, but they exist. A lot of the books come from other bookstores throughout the States. The prices vary according to the condition of the book.

Now you’ve got me interested in reading Dodie Osteen’s story. I’ll try to get ahold of it. Do you know the name of it? Thanks for sharing this info.

Prayers and best wishes always! Kats2

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Kats2,

I gave the link to the book it in the posting above.

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Sister: Over-comer/ Sweetk I am so glad you posted your story. Every testimony has the

potential to help another warrior, and give hope to someone who may feel like they don't

have the strength to fight another day.

Almost 20 years ago I was involved in a car accident, and I was unconscious for (30) thirty

minutes. When I woke up I couldn't remember my name . I had two herniated disc, and two

bulging disc. I had extreme pain from the back of my skull to the back of my knees. My car

insurance company sent me to what I thought was, at the time a quack chiropractor. That Dr.

Chiropractor was an angel sent from God , who had me walking normal and most

importantly walking completely pain free in three (3) months .See if your oncology doctor

thinks it will be prudent for you to be treated by a experienced, certified Chiropractor.

I pray you will get to Disney World with your son ASAP in God speed time . i know you and

your son will have the time of your lives. Amen.

Warriors we have to stand together and fight until cancer is defeated, a mantra inspired by a

10th annual breast cancer walk I participated in this past Sat. Oct 14th, 2017.

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