Hello from the air – I’m flying to meet mom at the SeaTac before we head to round 8 of low dose metronomic chemotherapy with Dr Naixi (Nick) Chen at Seattle Integrative Cancer Care Center. My last update was 8 weeks ago, and it feels like there’s been a lot of good in the last 8 weeks. This is a positive, hopeful, update, if you’re trying to already catch my tone.
An answered prayer – her weight is stable. Her appetite is better. And she is currently in no pain!
May 31st, Mom had her first follow-up CT scan since treatment began. The original CT has shown rapid growth of the tumor, lesions and her tumor markers. 8 weeks later, with all her treatment protocols in place, we have seen –
Liver lesions: there has been a slight decrease in the number and size of previously seen lesions; currently measures 14 mm previously measured 24 mm. Pancreas tumor; decreased in size slightly. Previously measured 5.1x4x4.2, now 4.5×3.6.
This news is incredible. Not only is it not growing, but it’s smaller. And, about 10-12% smaller. Although I haven’t received Dr. Chen’s review (We have certainly felt the burden of understaffing in the healthcare industry during this journey), our naturopathic doctor seemed very hopeful with this! Celebrate with us!
Last week, we added a new treatment
Mom visited White Rock, B.C. last week for LRHT loco-regional hyperthermia treatment. The goal of this weekly, hour-long, pain-free, treatment is to
- make chemo 2-3x more effective
- heat the body to a temperature that cancer cells can’t handle but healthy cells can
- Improve vasodilation for drug delivery.
Outside of Integrative Health Clinic in British Columbia, the next closest clinic with these offerings is in Irvine, CA. We feel very fortunate to have such an incredible local resource. And, Dr. Parmar feels the void that we’ve been looking for; a relatable, intelligent, oncologist with a teaching spirit.
Alongside the LRHT, she continues IV Vitamin C, Mistletoe, and Ozone UVB. Plus, once a month, they will induce a fever using this device; Heckle HT3000 which up-regulates the immune function of the body’s healthy cells to fight off cancer. I am fascinated by Dr. Parmar’s work and so thankful that the bookmark I put on their website 3 months ago came to fruition. Ironically, Dr. Chen and Dr. Parmar have shared many patients in the past and both of them highly regard one another.
But – with new modernized treatments come heavy cost. I won’t tread lightly around this because It’s a reality. We’ve allotted for 12 weeks of this treatment, to ensure that we can see how effective it can be through her next CT scan. But that 12 week cost will be $11000.
There are 2 ways to donate:
Danise continues on a 14 day rotation of chemo therapy. She spends 6 hours in Seattle every other Tuesday and takes home an infusion pouch to finish out her 42 hour infusion. We still remain on the traditional 5-FU, Oxiplatin mix of chemotherapy because her CA-19 tumor markers continue to drop by 2000 every two weeks, for the last six weeks. Really, since my last update here. She had a value of 27000 that has dropped to 20000, now. There has been no justification to change her treatment plan. And, when a change occurs, it will likely lead to weekly treatments, instead.
I retract my prior statement, where I said that Seattle Integrative Cancer Center is so efficient.
Although the treatment is a better fit, I’ve been really disappointed in the team over the past month. There has been two cases of missed labs, one week where they didn’t have the right supplies and didn’t notify us, a botched chemo infusion bag that ran twice as quickly, and a staff that continues to treat my mom like a number “how often are you here???” (check her chart, please!). Unfortunately, the staff has been increasingly sassy with me, when I call to have them correct their own mistakes. There is very little between them and Skagit Regional; except Dr’ Chen’s regimen and the treatment options. And, that trumps all. So, we stay.
There are two doctors in this area that provide low-dose metronomic chemo, Dr Chen and Dr Cheu. But, Cheu has an old office in a “bad” part of town and we didn’t think that would be a good fit, despite his incredible reviews.
She tried a medical food study – it lasted 48 hours.
The one thing I’ve learned as a clinician, the patient has to enjoy compliance for it to work. And unfortunately, the meals from Faeth Therapeutics weren’t tolerable for her. Although their research and outcomes are incredible; this study is not for us.
But, thank you to everyone who sent the NBC special on Pancreatic Cancer to me. We have done Foundation One CDx testing which shows the genetic mutations of her specific tumor. These mutations are very rare and very specific. At this time, it doesn’t look like she is applicable, but we are continuing to watch the updates! I am adding the details of the study here, if it benefits anyone else in our situation.
There are two required, pre-screening tests:
- Tumor next-generation sequencing (NGS) – KRAS G12D or KRAS G12V mutation //
- HLA typing – High Resolution: A, B, C, DRB1, DQB1, DPB1.
- One lab that offers HLA typing is Kashi Clinical Laboratories. It offers both physician ordering and direct patient ordering. Because the study requires “high resolution” HLA typing, orders must be made by calling: (877) 879-1815 and requesting the “High Resolution Combination: A, B, C, DRB1, DQB1, DPB1″.
I see so many people who feel like they just have to sit back and let the doctors work. That is not the case. Each day, Danise takes purposeful steps in her own power, to help heal her body! Conventional healthcare doesn’t have YOU do a lot. You’re asked to sit back and swallow the pill. This is not the path we’re on.
Her Healing Protocol Continues:
- High Dose Vitamin C Infusions – one with Chen, one with Parmar, and fill ins with Dr. DeJong in Bellingham.
- Mistletoe injections 3x weekly at home, with IV mistletoe with Parmar.
- Ozone Insufflations through the hepatic portal vein – we’re starting these at home! We were given a generator; so thankful!
- Functional Chiropractic at Country Clinic 3x weekly and a 5 day Averio immersion in July!
- Daily Juicing
- Infared Sauna at BellaSoul 3x weekly
- A daily vitamin regimen that includes: Vitamin D, Berberine, Selenium, Silymarin, Vitamin B
- Filtered water (Berkey) and filtered air (AirDoctor)
- There’s a focus on Meals with veggies + avocado, coconut oil, berries, mushrooms, cruciferous veggies, no gluten, no refined sugar, and all organic meat.
- The Rife Machine
- Applying for insurance coverage for her Canadian treatments since they aren’t offered here
- Medical leave for Jeff so he can transport her to these appointments (shout out to the incredible group of transport individuals we have now!)
- A relaxing 4 day trip to Winthrop for LESS cancer talk and some good healing time
Life moves so fast right now. It’s very hard to keep everyone updated. Thank you for asking me when I forget to reply. Your love means so much. You can always reach me via text or on Instagram, where I post weekly mama updates.
Please reach out to visit with her, to walk, to have a game night, to make a meal; she would love that! Or, you can send a card (message me for address!)
I also want to take a moment to say, “thank you!” to the hundreds of you who have donated and helped us during this tremendously difficult time. Thank you for prioritizing that love, that attention, that prayer, that donation, that gift basket, the meals. All of it. There are small silver linings around every corner.
At the end of the day, the plan is His plan. And, your prayers, mean the most. Everyone who calls on the name of the Lord will be saved – Romans 10:13.