Leap Year and Self-Advocacy

 Happy Leap Day everyone and a special Happy Birthday to you Leaplings out there!

 I think it’s time to touch on self-advocacy. Many of you might be wondering why it took me so long! Anyone who knows me and my work in healthcare could speak to my passion about my own personal self-advocacy, as well as empowering others to do the same. Today I wish to share some resources that can help navigate the world of healthcare in general, let alone Oncology, especially when all the terms and plans of care include things that look nothing but Greek. 

 I came across the Outcomes4Me app in my many hours of research. "Outcomes4Me is the only direct-to-patient digital platform powered with the clinical, evidence-based knowledge you’ll need to best navigate your medical choices. You’ll be empowered with knowledge of the latest in innovative treatment options, clinical trials, and relevant genetic testing possibilities." 

 It has a medication and symptom tracker, medical record request option, evidence-based treatment options including active clinical trials, and a community to connect with others. This provides information in a patient-friendly manner, eliminating the Greek. 

 This would be my #1 recommendation (so far) for ongoing support throughout treatment.

 The American Society of Clinical Oncology (ASCO) Guidelines app was created to "... provide evidence-based recommendations and outline appropriate methods of treatment and care for clinicians. Our guidelines address specific clinical situations (disease-oriented) or the use of approved medical products, procedures, or tests (modality-oriented). Multidisciplinary panels of experts, including patient advocates, develop ASCO’s clinical practice guidelines." 

 Now this one is a little Greek. It might require some further research into the terms used and would be good to discuss with your medical care team. 

 The last and most amazing resource if your brain works in algorithms, like mine, is the National Comprehensive Cancer Network (NCCN). Patients can create a free account and I do recommend downloading the NCCN for Patients app (rather than the NCCN Guidelines app which is more geared towards physicians) as it is more patient friendly. I will caution, this not when to say "I googled it" and pretend like you know all the things, but knowing where this information is and being able to ask about it will only help you in your plan of care decisions. 

 Of note, just a couple months ago when I received guidance from my oncologists, the date of update was May 2023. It has already been updated for January 2024. This demonstrates the focus on providing the most up to date evidence-based research for treatments. 

Here is the example of the guideline for my specific type of cancer, provided to me by my Medical Oncologist/Radiation Oncologist:

 I elected to do neoadjuvant (pre-surgery) chemotherapy (rather than adjuvant or post-surgical) and we do not yet know my pathological (p) stage, but this still provided information for me to make the best decision for me:

This is the patient-friendly guidelines provided by NCCN:

NCCN Guidelines for Patients: Invasive Breast Cancer - There are guidelines for all cancer types so this doesn't stop at Breast Cancer! Get all the guidelines here!

This is a great guide on how to SpeakUp for your care!

 I would be amiss if I did not hit on generational differences related to healthcare decisions. Know that in whatever generation you land, speaking up for your own health can only lead to improved care and a better understanding of your plan. Please support those of other generations to see the benefits of self-advocacy. It could save their life!

TL;DR

• It is a leap year and those who have birthday's today are called Leaplings!
• There are many apps and resources to help us be self-advocates for our medical/cancer care.
• Speaking up for your medical care can only result in better medical care.
• Help support your fellow man (or woman) by understanding how different generations view medical advice and encouraging them to self-advocate. It could save their life!

Current Timeline and Change

 I thought I might take a moment to update everyone on the current timeline (always subject to change). As per my post outlining my TCHP cycles, my next cycle should be March 11th. Things such as low white blood cell count could delay this, but otherwise, as long as it is a go, we see how that cycle goes and in the meantime, have a repeat MRI to check the status of the tumor. I should know more about those results around March 21st or 22nd if all goes as planned. From what I understand, the following options apply at that time:

Pathologic Complete Response

 Just continuing to take it one day at a time and making decisions based on what we know to be true, when we know it to be true.

Juven and Bomshel

 I would be amiss if I did not mention a few other items that I feel are crucial to my overall management of side effects. 

 I cannot say enough about these amazing creams from Phys Assist. Smelling like an herb garden and having moisturized skin from head to toe is really refreshing. My amazing team of Physical Therapists, Occupational Therapists, and Speech Language Pathologist really nailed this one! Thanks guys!

 A couple other products that have helped me manage my mucositis and GI issues is Arnica and Juven. 

***Disclaimer: Speak with your medical care team before using any supplements as some can interfere with specific chemotherapy, targeted, or hormone therapy treatments. This is my experience with my medical situation and is not meant to be used as medical advice! In fact, my oncologist states eating tuna can have same/similar outcomes than collagen so supplementation is not always the answer when you can focus more on nutrition!***

 Arnica can be used topically or orally (by mouth), and for decreased inflammation and pain, I have been using it orally. I've used it for years instead of NSAIDs (e.g. Ibuprofen and Voltaren Gel) for musculoskeletal pain and bruising, but the oral option has really helped recently.

 We use Juven all the time with our patients with wounds to promote wound healing. It consists of Arginine (An amino acid that promotes blood flow and is a building block for proteins, which can contribute to wound healing), Collagen Protein (A type of protein that stimulates internal collagen production), Glutamine (An amino acid that helps cells produce the building blocks needed for new tissue), Micronutrients (Vitamins C, E, B12, and zinc are important nutrients for the wound healing process), and HMB (A leucine metabolite that may protect muscle cells and preserve and maintain muscle tissue). There is some research that shows a positive impact of glutamine on decreasing the severity of mucositis and I'm here for all of that. Mouth sores are so painful!

 Here is a systematic review that states, "It [glutamine] significantly reduced the incidence of grade 2, 3, or 4 mucositis and/or reduced weight loss as well as the duration, time of onset, and/or maximum grade of mucositis."

 I'm going to really geek out on you now. As I link research articles, it is beneficial to know what types of evidence have the highest quality and least risk of bias, insert hierarchy of evidence pyramid here:

 Another study focusing on HMB:

 Now for some sister torture. The only thing she hates more than early 2000's country is late 1990's country. This one is for you sis!

TL;DR

 There are some great herbs and supplements that can help to manage chemotherapy side effects but it is important that they are used after consulting your medical care team. As I link research articles, it helps to know that systematic reviews are the gold standard to ensure high quality and low bias information. And, I love to torture my sister with country music from any era.

Why is it called cancer? and Note to Self

Hippocrates is credited with naming "cancer" as "karkinoma" (carcinoma) because atumor looked like a "crab" ("karkinoma" is Greek for "crab") in that there is a central body to a tumor and the tumor extension appeared as the legs of the "crab".

Note to self:

Staging/Grading of Cancer and Slowly Finding Peace

Hope you're all up for more learning. This stuff is absolutely fascinating. Today we'll dive into the differences in cancer grades as compared to clinical vs. pathological cancer staging. 

Johns Hopkins outlines the differences very well, so I have linked that website for reference and will try to put it into an easy to read format:

First, we'll learn about the TNM System for Staging and the difference between clinical (c) and pathological (p) staging. Until surgery, the final, pathological, staging cannot be completed. This will be the true, what they found, real extent of the tumor and provides the most accurate picture of the extent of the cancer. The clinical staging is developed only from diagnostic imaging of ultrasound, biopsy, mammogram, MRI, and PET scans, just to name a few.

• Size of the tumor (T): How large is the area of cancer?
• Spread to lymph nodes (N): Has the cancer spread to nearby lymph nodes?
• Metastasis to distant sites (M): Has the cancer spread to other areas of the body?

I am a T2cN0M0. 

What does this mean? 

Since the size makes the T, the 2.2 cm at it's largest point made it a 2. Since no diagnostic imaging indicated confirmation of lymph node (L) involvement or metastases (M), they landed at a 0. You may be remembering the T11 vertebral area found on PET Scan and MRI, but due to a lack of confirmation from that imaging, I stand as an M0. 

The goal still stands to biopsy T11 during surgery which will give us a more definitive answer of my pathological M score. I will undergo a sentinel lymph node biopsy which will provide the pathological L score.

The breast cancer stage, which comes in a stage 0, I, II, III, or IV with possible A's, B's, and C's, is developed from the TNM Staging. It gets pretty involved and has an if this than that approach. I'll leave it to the professionals.

I'm a Stage IIA.

Finally, the grade. The grade of a breast cancer is a prognostic factor and is representative of the "aggressive potential" of the tumor.

• Grade of the cancer (G): How closely do cancer cells resemble normal cells?

I'm a Grade 2.

Even while I wrote this post, I had to wrap my head around grades vs. stages to keep it all straight. I hope this helps bring some clarity into the different ways we look at and provide an objective common language to cancer.

Helpful Things and The Most Important Decision

 This post is not to impose ideas upon others, to act as medical advice, or a request for anyone to purchase these items for me. I plan to share the things I have compiled from all my research that may help to spark ideas as we pay it forward with the new knowledge we've gained throughout my cancer experience. If you know someone who may benefit from these items, please consider sharing this information or sending them a nice care package. It lifts the spirits!

For my scalp:

• I was gifted some amazing Alra conditioning shampoo which helped to calm the tenderness in my scalp even before my hair fell out at week 2 (as predicted). It has proven to be a major go to for my scalp care.
• I came across a blog by a hairdresser who advised to buzz my head but not to shave it clean, and then use a lint roller to pull out any hair that wanted to release. This decreases the chance of folliculitis or other irritation of the hair follicle which can cause yet another unfavorable side effect. It was great advice!

(Mine decide to leave with much less resistance, but it was a cute GIF so there you go!)

• Other favorite items come from fridababy: Cradle Cap silicone brush, scalp mask, and leave-in conditioner spray have helped my scalp transition comfortably to my new me.

• My last item proving to be beneficial is Ancient Greek Remedy Organic Face and Body Oil for Dry Skin, Hair, Hands, Cuticles and Nails Care. Olive, Lavender, Almond, Vitamin E and Grapeseed Oils. You can't go wrong with those ingredients. Catch me just right and you'll see my shiny oiled up bald head! 

Next up, oral care:

• A little known fact is that you should plan to get your routine dental cleaning at least 2 weeks before chemotherapy begins and that your dentist should be part of your cancer treatment. While other emergency dental work can be performed if needed, routine care should happen before and then after your chemotherapy is complete.
• I was able to do just that due to great advice from a colleague who has been here, done that. During my talk with my dentist, he recommended SalivaMAX® which has been a life saver. SalivaMAX® is a supersaturated calcium phosphate powder that, when dissolved in water, creates a solution with a high concentration of electrolytes similar to that of natural saliva. The more you can keep it "normal", the less mouth sores you may endure. 
• I was also offered Magic Mouthwash if needed and unfortunately, despite my diligence in oral care, I did. I have it ready for this cycle. This is the recipe:

The viscous lidocaine 2% requires a prescription, but because I spoke to my dentist during my cleaning prior, it only took a quick phone call to get this initiated. Add in the maalox or mylanta and children's benadryl in liquid form to make up this beautiful concoction.

Can you believe it? Nail care:

• So many nasty changes occur with one of my chemo meds, Taxotere, up to and including nail loss. 
  

• To maintain appropriate vitamins and moisture, nothing beats Londontown Restorative Nail Cream and Sally Hansen Vitamin E Nail and Cuticle Oil:

• A blog introduced me to Sally Hansen Complete Care 7-in-1 Nail Treatment and it is advised to either continue to add coat over coat without removing, or only use a non-acetone nail polish remover such as ella + mila soy polish remover:

Finally, for now, immune system and GI relief:

• I started some research into more natural immune support options as I will not be going back in 1 week to get labs and therefore won't be getting the GRANIX. I want to support my own immune system as much as possible. Here are a few articles on Bee Propolis for Immune Support that are quite fascinating.
• https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9127854/

• https://cms.bezmialemscience.org/Uploads/Article_50745/BezmialemScience-10-123-En.pdf
• Best nausea deterrents (besides prescription Zofran and Compazine):
• TUMMYDROPS - Have a serious bite but do the job!

• Big Heart Tea Cup of Sunshine - Tumeric, Ginger, Cinnamon, Malabar Peppercorn, and Tulsi hit all the spots!

TL;DR

You don't get a shorter version today, scroll to the top and soak in the new day to day rituals I have in place to keep my spirits high and body rocking for the next cycle!

Cycle 2 is a go!

Here I am! Ready for round 2! All my labs were good enough to move ahead!

(Updated my photo to show off my handmade earrings from my 1.5th favorite gymnast - only because my granddaughter is my 1st)

Not the worst view for my infusions!

My infusions are Perjeta and Herceptin at their regular dose, followed by Taxotere and Carboplatin. Should be about 4 hours and my sister is here with me checking it all out. I’m feeling good and ready to rock this next three weeks. 

 Thanks for all the well wishes! Here’s a fun snapshot from the Valentine’s Day head shaving event!

Let Us Celebrate Random Acts of Kindness Day

 Today is Random Acts of Kindness Day! There are all sorts of fun activities to do if you go to RandomActsofKindness.org. Krispy Kreme is even celebrating by offering a free donut!

I have been surrounded by acts of kindness and want to thank everyone. Remember:

Acceptance and Gratitude

 Wednesday was the big day. Hair is gone. I will share a pic when I get the right one.

How I feel right now:

“Even baldness becomes a beauty of a hairless head through the heart of acceptance.” - Munia Khan

I want to thank my tribe for being there and helping me through this next step!

I trust that:

TL;DR

My head is shaved. I'm surrounded by good people. I trust February is bringing good things.