Support Registry Update

June 16th update

In support of
Amanda Paul & Family
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Hi all! It has been 2 weeks so I thought I would send another update!
Thank you to all who have been praying and helping and holding me up. I have never needed it more and I so appreciate it.

I finished cycle 2 of a chemo combo involving Paclitaxel (Taxol), Carboplatinum  (Carbo), and the immunotherapy drug Pembrolizumab (Keytruda).  On week 1 I get all 3 drugs. Weeks 2 and 3 I get just the 2 chemos and no immunotherapy. Then on week 3 I am supposed to get 3 days worth of Pegfilgastrim shots designed to make your bone marrow work harder to produce more white blood cells. This is because 3 weeks of weekly chemo tends to exhaust your WBC and that can put you at risk of infection if you encounter things in your environment. With 6 kids at home its inevitable for me.  HOWEVER,  both cycles now (week 3 and week 6) I have had extreme headaches with these shots that cannot be controlled and render me completely incapacitated for about 24 hours or more. I have only been able to get 2 of the 3 shots each time. They are discussing whether or not we are going to scrap these for the remaining 2 cycles or attempt other coping meds. The meds they have attempted so far have made things worse not better so I am NOT looking forward to trying this again.

For the first 6 weeks I did not have many direct chemo side effects other than losing most of my hair week 4. Now that I have completed week 7  I am slowly starting to experience some annoying ones. Sores internally and externally in a variety of places that are annoying and distracting. And painful back spasms. Fatigue has been minimal though and no nausea (except with those headaches). So I still count myself very blessed.  I know it could be so much worse and I am trying to count the effects I AM having as proof that this powerful treatment IS working. PERSPECTIVE! I don't have quantifiable proof yet (because they haven't scanned for measurement yet but I can tell the tumor is WAY smaller already! Praise the LORD.

I won't make this a whole lot longer - but I will explain this about triple negative breast cancer.  The reason it is called triple negative is because they test the tumors for receptors to 3 things... progesterone, estrogen, and the protein called HER2. Most breast cancers are positive on one or both of the hormones. Sometimes with those they would just do surgery and hormone blockers if it wasn't spreading into lymph nodes. Mine is triple negative because it is negative on all hormone and protein receptors. They still aren't 100% sure what feeds these tumors then so its "harder to treat" because they can't target it specifically like they can with positive cancers. Triple negative also tends to grow and spread very fast. I can attest to that. Mine doubled in about a month.  They say the faster they grow the faster they melt away though and that has also proven true. They treat triple negative the same all around the world now. ITs called the Keynote protocol. 12 weeks of Taxol, keytruda, carbo combo. Then 12 weeks of Adrimyacin cytoxan keytruda combo, then surgery, then more keytruda and radiation. Each step has potential risks and hopeful benefits.

 Most other breast cancers carry about a 20% recurrence rate after they get to remission. Traditionally triple negative carries a 40% recurrence rate post-remission. I am trying to look on the positive that this is STILL greater that 50%.  What's more... the addition of the immunotherapy has some doctors believing it brings it closer to 25% instead of 40%. I also believe in a God who supersedes even the tightest of 1% miracle margins - so of course there is that. I have joined several Facebook support groups specifically for triple negative breast cancer and have found lots of ladies living 10, 20, and 30 years without recurrence and several who have beaten it back to remission 1, 2, and 3 times and are still thriving. I am sourcing joy and hope from several places these days!

For now, these are my specific prayer requests:
-All these sores to be healed and avoid infection
-The doctors to decide on a way to avoid or handle the headaches from the shots
-Continued protection from the very dangerous side effects possible from the immunotherapy
-Continued strength for the chemo regimine itself

Needs:
-Some folks have been signing up to help clean the bathroom and kitchen while I am at chemo. There may be some open days for that.
-I got permission to weed and do light yardwork, but am always open for a chatting buddy to help while I do it - if that is up your alley, message me and we will plan a day.
-I have one friend who has brought me to most of my chemo appointments. There may be some weeks this summer she cannot. If you have a hankering to chat with me for 4 hours straight on a Monday (LOL) message me and I will put you on the substitute list for when she is unavailable!

I think that is it. Reach out if you have any questions or comments. ALSO - if you know someone personally that is a thriver on the other side of triple negative breast cancer I would love to connect with them. Send them my way!
Blessings,
Amanda Paul

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Comments

Randydenisepaul

My sisters and I are all still praying for you. Stay strong, stay positive. Love you.
  • 6 months ago

Pamela Mundling

I"m sure there are moments when you feel overwhelmed...you've got the right attitude and spirit! God, isn't impressed with what the experts think is true. I'm glad you're part of God's reality. I might be able to help with a ride to chemo if you need it, where are you being treated at? Rock on dearest and know you have been and will contiue to be in my prayers! Hugzzz
  • 6 months ago

Ashley.l.byles

Thank you so much for taking the time and energy to fill us in on all the details going on. I know how much it means to me to know, so I assume it probably means that much to a lot of people.

My church is praying for you and we love you Amanda.
  • 6 months ago

Peggy Kelley

Praying for you, Amanda! Praying for protection from infection, headaches, and side effects. Prayers that God continues to flood your body with strength, healing, and endurance. ❤️
  • 6 months ago

Sherri Elsner

Thanks for the update and sharing the specific ways we can be praying for you Amanda. I continue to lift you in prayer.
  • 6 months ago