The Anderson Family

SOT was delayed from Greece, so we are hitting things hard while we wait. I am typing this update from the infusion chair! I am doing high-dose vitamin C+K3 infusions until the "SOT window" -- in which I cannot do any cytotoxic treatments for two weeks prior to SOT administration. (Then two weeks after SOT, I can proceed with chemo). The C+K3 infusion is intense. It takes about four hours and is quite painful--particularly in cancerous sites and any area of inflammation. I am a pretty tough cookie with pain, but this is quite intense! (But I actually don't mind because it gives me hope in its effectiveness! It is going right to the known cancer places!) These C+K3 treatments (as well as the SOT, which will be in a few weeks), are cytotoxic--aimed at promoting cancer cell death. The C+K3 will also weaken the "resistant outer layer" of the cancer cells so that any cells that do not die have a better chance of dying when I start chemo. (The cancer that I was diagnosed with shows a high level of treatment resistance--which is why I am doing these treatments in this particular order, instead of jumping to chemo first.)

These treatments are all out of pocket. We simply could not proceed with the treatment that seems to be best for me without your continued help and support. We are also working with our Medishare Plan coordinator to find a solution, as the Oncology Hospital where I receive chemotherapy has made a change to their network and will no longer accept our insurance, which effects our billing in a big way. We so much appreciate any help! Thank you so much!

Met oncologist to review PET results. That AP Window node does move me to a clinical Stage 4. But I still have much hope. This is one way to move us toward the right next step with treatment and surgery timing and options. My case was reviewed at Tumor Board and the consensus was continue treatment. I need to get cancer burden down before we can proceed with surgery. So this is the plan: First will be a second SOT* with RGCC (Research Genetics Cancer Center) to follow up the one I did in January. It is 100% out of pocket, and very expensive, but it is also the one thing that seems to have shown some effectiveness after trying the whole last year of targeted chemo treatments! And after the SOT window, we will employ more chemo, but this time likely A+C.

In addition to these therapies, I am continuing on a more aggressive supplements plan and integrative therapies (Oxygen, Sauna, PEMF, Ion Foot Baths, Lymphatic Support, and additional Hyperthermia to the mediastinal area where that new AP node is). It is a lot right now. But necessary to "press in" with intentionality until the SOT treatment arrives. We want to keep weakened cancer cells from making a fast recovery from that first SOT.

Because of the AC, they are advising my hair will fall out. (Gah!--it has been growing back this past year--so that will be tough on my kids to watch happen again.) But hair grows, and going back through the tough chemo is another opportunity to show my kids that we do not ignore hardships--they are part of this life! But we actually can face the hard AND have true joy and peace in the midst of it. So we press on and trust.

Another test we are awaiting with RGCC is an updated Oncotrace** which will test sensitivities. After having so much chemo, there is a high likelihood that the cancer cells in my body have mutated and developed resistance. An updated sensitivities check will help us confirm that the cells are still sensitive to AC and whether there are additional treatments that might be more effective.

*SOT: Supportive Oligonucleotide Therapy -- "SOT is a personalised therapy for cancer, viruses and pathogens including Lyme Disease. The SOT has the ability to bind to a specific gene of interest that controls the cancer cell or pathogen by disrupting the critical process that promotes its survival or growth. During this therapy, we analyse a patient’s blood and we create a complementary oligonucleotide sequence that is designed to interrupt survival or growth of the cells."

**"Onconomics Plus RGCC provides information about the effect of specific anti-cancer drugs, targeted therapies and natural treatments on the cancer cells in an individual patient."

It is difficult for us to ask so often for help to bounce. But every bit helps us walk each step of this long, long road we are on. We are so grateful for ANY support!! Thank you SO much!

PET shows slight reductions, but with increased metabolic uptake. Also shows new uptake in an AP Window node, which has Curt and I a little concerned, but holding it all loosely until we meet with oncology Thursday to discuss everything in detail.

Our functional team had told us that if the PET showed any decrease in cancerous areas, with increased uptake, it could be indicative of the SOT treatment effectively injuring the cancer. If this is the case, a second SOT would be implemented in order to (in his words) "one-two-punch" the injured cancer before it can repair itself. The genetic information we obtained early on showed that the cancer I was diagnosed with has a "high" ability to self-repair (and become treatment-resistant). This is one of the reasons we have continued to advocate for an integrated treatment plan--it appears to be beneficial for me. It gives me hope to think we have finally injured these cancer cells, and I am eager to start the process for the next SOT.

With this said, the SOT is a little more than $2,000 out of pocket (give or take, depending on exchange rates with Europe). And right now, this is a difficulty for us, and we will have to act fast, as it takes about 2-3 weeks to get the treatment from Greece, and another 14-day window after SOT is administered before we can do any chemo or surgery. We are also now into our new plan year for coverage, so any integrated chemotherapy (and eventually surgery) will be out of pocket up to our deductible. We are also still trying to work with our plan coordinator to find an in-network provider for emotional support for our kids. From all angles, we are needing a little help to get through this next leg!

It's just a tough season! This is just the reality we are facing. We see hope on the horizon, but there is a mountain in front of us, and we are going to take it on one step at a time, however we are able, and trusting God with each step just like we have from day one. We also recognize we are NOT the only people who are suffering with a medical+financial crisis and in need of help to "bounce!" We are taking a painful risk by being real about our needs, which is very difficult for us. We enjoy giving. We are not good at asking! If you are inclined to help us in any way, we so very much appreciate it. We truly do. When I go in for a treatment that we have been able to do because of HMB funds, I feel as if I have an extra support team with me. Sounds corny--but it is true. One positive in this: my faith has grown, my humility has grown, my ability to be real and ask for what we need has grown, my dependence on God and people has grown ... Now time to force that injured cancer to NOT grow! Ha!

We very humbly thank you for your prayers and support!

We have met with another oncologist for a second opinion and his recommendation is to get another PET scan to help us determine whether surgery is the best next step, or whether more treatment (finding another chemo to try) would be best first. This seemed wise, and our other Doc agreed, so this is our best next step. Prayers appreciated!

On Feb 1, our medical plan coverage renews, which puts us back into the position of paying out of pocket on ALL care until we reach our deductible. We are desperately trying to keep things as "normal" as possible here for our kids (normal meaning not losing our home and moving in the midst of this) -- though nothing about our life right now is "normal." There is a medical component to every single day. Financially, Curt is looking for work daily, and we are selling our possessions online--every little bit helps us get by one day at a time. None of us expected this to take so long and cost so much. But we are still determined as a family to continue to seek whatever treatment is wise and reasonable to get us through this. We have added to our medical needs emotional support & specialized counseling for our kids. We so very much appreciate the support we have already received to help us bounce up to this point! It weighs on my hearts to have become so heavy -- on my family, our community and even strangers whom I can never thank face-to-face. But I trust our suffering in this is not without purpose and my faith has grown along with my gratitude.

Photo: these are our kids ... Addie (17), took Asher (8) to go get "bubble tea" and spend some time together around the Mall while Curt and I were at Oncology. Addie spent her own work money on her little brother to make it an extra-special time together. I am very grateful for my kids.

Thank you for any support you can offer my family at this time. Your support and prayers mean so very much.  -Amy

Amy just completed 9 Enhertu Targeted Chemo infusions every 3 weeks since June. Prior to that, 4 Herceptin+Perjeta targeted therapy. And prior to that, a nine-week immune vaccine therapy through RGCC (Research Genetics Cancer Center) to ready the immune system after it was flatlined by the original 11 Paclitaxel+Carboplatin infusions.

Previous US imaging in Sept indicated a reduction in primary tumor, which indicated Enhertu may finally be working. This prompted a surgical consult, with clearance to proceed with surgery. The Pre-surgical MRI in late November indicated the primary tumor was now twice the size indicated in the September US. (MRI and US imaging are not comparable, but this level of discrepancy warranted another look.) A follow-up US recently confirmed MRI findings, citing not only a technical mis-read in the Sept US, but also a misread in the more recent MRI (overlooking a known level-3 node under the clavicle, which on previous PET, disqualified Amy for surgery).

While all the docs review latest US findings, the jury is out once again on what the best next oncological step is:  Surgery, leaving known disease behind in the L3 node; or, try more/different treatment(s). We will have more opinions to weigh after next week.

In the meantime, we are still working to get high copper levels down, and, considering another RGCC integrative treatment called SOT. (Supportive Oligonucleotide Therapy). "SOT is a personalised therapy for cancer, viruses and pathogens including Lyme Disease. The SOT has the ability to bind to a specific gene of interest that controls the cancer cell or pathogen by disrupting the critical process that promotes its survival or growth. During this therapy, we analyse a patient’s blood and we create a complementary oligonucleotide sequence that is designed to interrupt survival or growth of the cells."

I am hopeful for this integrative SOT therapy. And I am hopeful that "somewhere" in oncology is an effective treatment for me. But what I am more certain of now is how little anyone really knows. Everyone is trying their best with what they know, but we still know so little. Working an integrative approach to cancer treatment, I straddle two worlds that rarely talk to one another. It is not an easy road, but my goal is not "easy," it is "cured." So I press on, walking the middle, as I have been led to do for "me."

The Enhertu treatments that we thought were working may not have been, and these are what our insurance covered. Ugh! The SOT therapy will once again be out of pocket for us. After these past two years of a nonstop, full-court-press treatment of the most invasive, most aggressive Stage 3 invasive ductal carcinoma, I am grateful to be here. I am weary but am determined to continue doing as much as we are able to do. This has been tough on our whole family; the road is long and slow and full or turns and stops and pivots. This latest pivot was disheartening. But I will not lose heart. I have spent the last few weeks growing in my faith. The more I realize we do not know, the more I re-surrender into my Lord's hands. He knows. So as we stand at yet another crossroads on this super-long journey, we appreciate any support and prayer. We need it to continue on in this fight! Thank you so much!!

On a positive note: my liver had been showing damage from Enhertu since May. Liver health is critical for SOT therapy. Labs at last infusion showed liver values "suddenly" back in NORMAL except two, which were simply elevated. I see that as a (not so) small gift from God. So my body is already(!) ready for SOT when we can make it happen.

To learn more about us and for more personal updates, you can visit our caring bridge site.

Thank you so much for your support.

Completed #7 last week. Side effects are kicking my butt a little, and my liver is "showing signs of injury" according to oncology, but I am still standing. My joints are creaky, but I AM still standing. I had an MRI yesterday, awaiting results. In the meantime, and to my dismay, my copper re-check showed even further increased copper. I am now clinically high in copper. Ugh!! This is frustrating news, considering I have been on a copper chelator for about a year, and have been taking additional supplements to help move copper out, and, have been on a low copper diet for more than a year. This matters because cancer cells can use copper for energy. I have been on ZERO sugar/sweeteners of any kind (even paleo-safe sugars) for more than a year; eating modified keto/paleo for many years, have gone plant-based for much of the last year, and have worked HARD to starve these cancer cells (sometimes water fasting too), and yet it continues to hijack my copper. I am reminded of the things I simply cannot control in life! But I am comforted that I trust my God to be in control, and He is good and kind and faithful. But I still need to work hard and do my part, and walk the road laid out before me with everything I am able. I will be working with the functional team to help support my detoxing so that the copper (and everything else!) will move out. With the liver being taxed, my primary detox pathways for the copper are not keeping up. I will be adding some functional support, and, looking into a therapy using a machine called HOCATT to help detoxify my body. Why does detox matter? Because one thing I have learned in the nearly two years on this journey, is that how you detoxify matters in cancer healing. The detox rate needs to keep up with the kill rate. Add to that the "other stuff" we are killing or detoxing in order to address the root cause (why cancer developed in the first place)--yeast, bacteria, parasites, etc. And in my case, also copper. All this is taxing my liver, which is being damaged by chemo. We will consult with each doctor--the Oncologist, the Functional MD, the Surgeon--and prayerfully go from there to determine the next best step. We are still living moment-by-moment here, paying 100% out of pocket for all functional care, trusting God to provide whatever we need whenever we need it, and trying not to look too far ahead into what we cannot yet know. Living "breath-to-breath" as I have been saying. THANK YOU for supporting us, either with help or with prayer. It all helps us bounce!!

I completed Enhertu #6 on Thursday. On the functional side, we ramped up our fighting efforts with a hi-dose Vitamin C IV the day prior to chemo and a 10-day run of Doxycycline, with intent to improve my immune function as well as to ramp up apoptosis (killing of cancer cells). Also did a CTC (Circulating Tumor Cell) count using RGCC (Research Genetics Cancer Center) in Greece (since this is not part of standard oncology in the U.S.), and those numbers are down some, which is good, but we need them to be ZERO. We met again with surgical oncologist. It is good to be moving toward the next phase of my treatment plan, after 18 months of "treatment" phase, that was supposed to be 4 mos! But I have been determined from day one to make no decisions based on fear. But to follow where I felt led to go, with wisdom and much prayer! So far, I have been led to continue to see an INTEGRATIVE approach to treatment--not only with standard oncology but also with functional medicine, combined. This is not for the faint of heart! But we are walking it, day by day! I also have been checking copper/zinc ratios and the latest show an IMBALANCE. This is not what we want. So I am ramping up supplements to help chelate the copper, increase the zinc, and open up detox pathways and support my liver (that is getting a butt-kicking from chemo!) ... so there is more work to do before it is best for me to get into surgery. Sigh. It is getting long and wearisome. But I am trusting with each step.

It is difficult for me to say this, but over this long journey, we have exhausted our raised medical funds, and I am still getting treatments to help me fight. We would so much appreciate your prayers and support to help us continue to get the care that seems to be best for me!

This is Amy again. I received Enhertu infusion #4 yesterday. I slept most of the afternoon and though I am still tired, I am up and doing some things today. Managing nausea pretty well, and able to eat healthy things before I really start to feel it in the next couple days, so that is good. Working a functional plan alongside standard care clearly is serving me well by helping my body manage and overcome. It's tough though, even for a tough cookie like me--not gonna lie. But I am grateful.

This is treatment attempt #3 and this road has been longer than any of us expected or wanted. I am nearing the 2-year mark since cancer first showed up and I'm frustrated to still be on this road. I am still in the TREATMENT phase of my plan, that was supposed to be 5 months total. Surgery and Radiation are still the expected next steps, once tumor burden is down. But, I am also GRATEFUL to still be on this road. I AM still fighting.

Honestly, this past month I finally cracked a little! I have been lamenting and praying. And feeling sorry for myself, to be real honest! Chemo is just hard. But this road--this full-court-press that I have been on for 18mos--it's just frankly taking a toll. And it's humbling. So after having my tantrum, I now am "practicing" patience. I'm waiting for the weight of this entire season to lift once it has served the good purpose it has in my life, and the lives of my husband and two kiddos. In the meantime, I am still learning to ask for help when I need it.

Thank you for checking in on us. I don't know what we would do without the help of others until our current situation turns around. It is so difficult to be the "receivers" but it is also growing us in character and humility. Thank you for your prayers and support.

This is Amy. Chemo is kicking my butt this week, but I refuse to complain—it could always be worse. After nearing 18 months of treating cancer, I am tired and yet hopeful for better treatment response with some new options. I have been resting more, and this week has been tougher, but a snuggle with my furry boys sure helps. I am thinking some of the side effects I am having are herx-/ detox-related. And so I hope to employ more support from the functional side in order to endure better (eat well, take all my supplements, exercise... all the things I am trying to do to fight!) through this treatment. We literally could not do this without your continued support, and we are so grateful and humbled. This week has slowed me down, but I am still in this fight! I’m pressing on. Thank you for your prayers and support!

On Friday, I got an IV treatment to prepare my body for my infusion #2 of enhertu today. This time, I opted out of premeds to help my liver focus on the drugs that are actually treating cancer, while I try alternative side-effect mgmt & comfort measures at home. So far today, I am managing well—there are far fewer side effects as last time, which affirms for me that some of the strange/neurologic side effects were due to premeds. I also think I experienced a bit of detox sickness (which is great—means treatment is killing cancer cells!) but also means giving my liver & kidneys less to deal with is a priority for me. So, trying no premeds this time, and we will see how the week goes.

Thank you for the support. We literally could not be doing the things I need to do to heal without the help of community. It’s been humbling to be so “needy” but we are learning to appreciate community (not just being comfortable always being the “givers” but learning how to graciously need & receive help, too!) and we are growing as we are continually being stretched. We are grateful beyond words. Thank you so much for helping us “bounce.”

For more details & updates, please visit our caring bridge. Thank you!!