Update from Denver

July 25, 2016
Hi Everyone, It’s been a few weeks and I just wanted to give you an update on what’s been going on and how I’m doing. My cancer markers did elevate slightly but overall I’m feeling quite well. I’ve adjusted seemingly fine to the altitude and I’ve been outside every day exercising and hiking in some capacity. Some of the anti-estrogen medications my oncologists have me on cause a lot of abdominal bloating. Since the cancer is responsive to estrogen, progesterone, and androgens, the docs want me on medications that block this activity to further prevent continued growth. At one point I gained almost fifteen pounds in a two week span and I have ovarian cysts now, which I’m not supposed to have at all. Thus again, my body doesn’t respond the way doctors believe it should. None of these supplements I’m on caused the cysts because many of them were taken all year long and I didn’t have ovarian cysts.
I had a PET scan last week and the results were very good. My oncologist and the radiation oncologist stated that there was no cancer activity in my bones. They didn’t think at this time I’d need what they refer to as “spot welding” because the images looked really good and there was no evidence of further metastasis. “Whatever you’re doing, keep doing!” was the overall gist of what she said. That’s great news!! Three different docs have suggested that I start weight lifting to build the bone. I plan to start Cross Fit with my kids (who have already been doing this for two years) and use the barbells and weights several days per week. We purchased an infrared sauna that’s portable and now I use that about six days a week and Jamie has enjoyed using it at night as well since it seems to help him relax more while sleeping.
I’ve basically met with four doctors here. One is the oncologist, another is my primary care physician, an integrative and alternative doctor and the radiation oncologist. I’ve also had to meet with a dentist and oral surgeon because the medication the oncologists gave me caused some issues with jaw pain. If you look up Zometa or Fosamax or Xgeva , one of the side effects is bone pain or osteonecrotic jaw. They gave me this medication to help prevent the cancer cells from sticking to the bone lesions but the side effect is often severe jaw pain and an inability for new bone cells to grow and replace the old bone. For whatever reason, it can affect the jaw, especially when you’ve had recent dental work. I’ve had some dental surgery so that seems to be what triggered this. Again, the oral surgeon was one of the doctors who suggested the natural way to help heal the jaw is weight lifting. I’ve been in my room lifting dumbbells and clenching my jaw to trigger bone growth and I’m incorporating weights now in some way as often as possible on a daily basis.
My oncologist here says I need to take Perjeta and Herceptin (the gene targeted therapies) for life, or until I develop ” intolerable side effects.” I’m not sure I will do that beyond a year since the company that manufactures these meds even states that they are really only effective for one year and the research doesn’t prolong my life. Also these meds are extremely toxic to the heart and they run about $40,000 every three weeks. My PCM and integrative doctor suggested checking out the cannabis shops to learn more about TCH and cannabis oil for cancer care. I plan to do that as the research does seem to indicate cannabis oil kills cancer cells. Both doctors told me that the personnel who run these establishments are some of the most knowledgeable people you’ll find. I ‘ll let you all know how that goes when I get in there.
My integrative doctor has also suggested weekly Vitamin C infusions and if I should later decide to use chemo if needed he would use the top three that showed up on my chemosensitivity testing. He was not a fan of the Taxotere that I was originally placed on. I’ve noticed that the doctors in Mexico, Indiana, NY, and now here in Colorado that practice integrative medicine have all commented that the Taxotere branch or family of chemotherapies leave patients with horrible side effects that linger and may never go away. I’m sure many have taken it and have had no problems but they certainly affected me.
I also started seeing an acupuncturist who specialized in NAET acupuncture. She looks at all the trigger items in our food and environment that seem to cause my cancer cells to multiply and proliferate at a faster rate. She took a copy of my labs and genetic testing and sent them off to a lab in California for more analysis. We are working on treatment to help target areas that seem to feed or cause cancer cell growth. I shared last time that my particular cancer cells grow and multiply as fast as possible. It’s like every light and power source is switched on and we can’t figure out how to turn it off. The gene targeted therapies only look on HER 2 neu cancer cells, but the battery of tests showed other areas like apoptosis, angiogenesis, pathways, insulin, hormones, etc.. The goal is to work on the meridians that will target these specific pathways and symptoms and see if we can alter the rate and speed at which the cells are multiplying/mitosis.
I really like the new doctors I’ve met here. I’m learning how to “play the game” if you will with regard to getting what I need. Unfortunately my oncologist here can’t just give me the other chemo that showed promising results on my chemosensitivity testing because they are not listed on the National Comprehensive Cancer network guidelines. They are used for other types of cancers, not breast cancer. This is where it really stinks in my case. However, the integrative doctor said he could use them in Insulin potentiated therapy and he has been doing this for 35 years with very promising results for end stage cancer patients who are now alive 20 + years . All my doctors are within a four mile radius and so my options are open and available. If I go with the integrative doctor, that is all out of pocket. The only way I can get the other chemo if needed is if I put myself through process of trying all the ones listed on the NCCN guidelines first and then as a last resort, tell them I am “terminal ” and my insurance might pay for the ones I would want to try. In other words, I ‘d need to be a guinea pig first. It’s crazy how this system really works. Right now, I don’t need the chemo or radiation , but I am keeping my options open in case I might down the road.
Only God knows how this will all work out. I thank Jesus every day that I’m still alive. I’ve adopted my friend, Tiffany, another cancer survivor’s attitude , by saying, “Thank you God/Jesus that I’m still here and with my family.” I know without a doubt that He is greater than statistics and He is ultimately in control. I have nothing to fear. I just have to do what I sense He is calling me to do and try and not give up. It is exhausting at times but I know that I can do it and I have so much support.
I also want to add that after all our moves in the military, we came here to Colorado to a home that was already unpacked for the most part. That has never happened. Jamie’s parents, siblings, as well as friends and members of Jamie’s dad’s church came here before we arrived and received all of our household items and they unpacked the boxes. A neighbor came over the other day to introduce himself and he told us that he had never seen anything like it before. I don’t know if he was or is a church attender but he told us that that is what a church should be doing. He was so impressed and blown away. It really says a lot when people step outside of their daily routines to help another family in need and they are examples and demonstrating by their actions on what it means to really be a follower of the Lord.
Thank you so much for all your prayers and your example. We again have been very humbled. Love Allison