So, the results from the PET scan are in and the cancer is still growing overall. There were a few small areas of improvement, but overall there is growth or a few new spots of activity.
The plan is to finish the next 3 days on Talzenna and then give me a one week break from any medication before starting the new chemo regimen. This will be a 2-weeks on, 1 week off, for 3 cycles. According to my oncologist, I shouldn’t lose my hair, which will be nice for my kids.
Continue reading Chemo Again
This past weekend I had a chance to attend Camp Wieser with my family. The camp is put on by the Me-One Foundation. Their motto is “Me One, Cancer Zero”. One thing they do is put on a camp (mini-retreat) for adult cancer patients and their families. The only cost to the family is getting to the camp (gas, food, etc). The rest of the weekend is fully paid for by the Me-One Foundation.
It was such a blessing to be able to relax and not have to be worried about anything else. Each family attending the camp had either 1 or 2 hosts (depending on the number of children attending). The hosts were responsible for helping the family get to any scheduled activities, such as spa appointments, or adventure appointments, as well as watching the children so the adults could have time to themselves.
As a mom of 4 it was nice to finally have more than 5 minutes of “me time.” I was able to get a facial (a first experience), as well as a manicure (first time), and a 1-hour full body massage!
Continue reading Camp Wieser 2019 – Part 2 (the fun stuff)
So, I’m back from my weekend retreat.
It was a great experience, and very relaxing. My children also had lots of fun.
The food wasn’t the best for someone eating keto, but it was manageable. I’m now back to eating my normal keto foods (as soon as I get some shopping done).
I had lunch on the road on Friday the 13th (I had a bacon-avacado burger at a small diner). Dinner was salad w/ some kalua pork. I’m thinking it wasn’t the best meal, based on how my glucose reacted. Glucose went down and then waaaaaay up (for me).
On Saturday I skipped lunch (it wasn’t looking very keto anyway) and just had supper. I didn’t have any ketoaide with me, or much sugar-free powerade, so I think I was lacking salts. I was trying to stay hydrated, but don’t think I did well with it. Dinner was yummy (they had some sauce free ribs, yay!) that I put my own sugar-free sauce on (and used my own Primal Kitchen salad dressing). My glucose did fairly well with the Saturday supper, the only thing was I ended up puking several hours later. I had been feeling a bit nauseas earlier, but was trying to stay hydrated.
Yesterday I had lunch and dinner on the road. Lunch was late in the afternoon, 3:30ish and supper was about 5 hours later. So that meant that my glucose didn’t have a lot of time to come back down after eating lunch before I ate more food again.
Today I’m back to only eating supper, drinking green tea, and such. I’m not sure why my morning glucose was so high, but it could have to do with being thirsty or not sleeping well (I’m not saying they are causative, but correlative). My glucose seems to trend higher when I don’t sleep as well (I guess its like mini roller-coaster dawn phenomena?).
The other day my son “Mario,” age 9, asked me about how I got cancer. I wasn’t expecting the question at the moment because we hadn’t talked about it recently. I explained to him that sometimes cells in the body start to misbehave and start doing things they shouldn’t or sometimes they don’t do things they should. I really don’t know why it happened to me.
I do have to say that I still feel really well, and I can keep up with my 4 kids. It does feel like the size of the lymph node in my left armpit has gone down now that I have been on Talzenna. It’s hard to tell for sure though what changes are occurring. And of course, I have no idea what changes are happening in my liver – I have to wait for the PET scan for that.
But, God is good, and He’s been seeing me through this. Through this journey, I have been able to reach out to, and encourage others. It can be so hard to walk through this and to stay encouraged. I know God is there and He has been there with me the whole time. But, I still wonder sometimes “why me?”
So, I had an appointment with my oncologist today. Its been almost a month since I started taking a PARP (poly ADP-ribose polymerase) inhibitor (Talzenna). This isn’t really chemo and its not endocrine therapy. It is designed to specifically target certain parts of the cancer cells. I have already noticed improvements! I have not noticed any side-effects, and I’m feeling well and going great!
I did have a conversation with my oncologist about sugar and cancer and she mentioned that there are some studies coming out about how the two are linked, but specifically mentioned that there is a study looking at using metformin to reduce glucose levels in cancer patients. She also said that she has a patient who has a high A1C (somewhere around 5.5-6.0) who is taking metformin to lower their glucose! She asked if I was still following the ketogenic diet and I said yes. She is pleased with how well I am doing. She did say that metformin probably wasn’t a good choice for me at this time (since my A1C is good – 4.7) because she would worry about hypoglycemia. I said that since I’m eating ketogenic it wouldn’t be as big a deal because the ketones would make up for it.
Overall things went well today!
Next appointment is at the end of September, with a PET scan beforehand.
Ketogenic Caner Diet pointed this out, and I thought it was worth talking about .
Would someone please explain the American Cancer Society’s thinking to me?
On this page the American Cancer Society (ACS) talks about different kinds of scans that can be used to detect cancer and check how treatment is going. They specifically say that PET scans use a radioactive glucose tracer because “Body cells take in different amounts of the sugar, depending on how fast they are growing. Cancer cells, which grow quickly, are more likely to take up larger amounts of the sugar than normal cells.” OK, so cancer responds to sugar…got it.
Then, on another page the ACS lists a bunch of foods, and most of them contain some form of sugar (either added or natural). Examples:
- Fruit (fresh, frozen, canned, dried)
- Ice cream, sherbet, and frozen yogurt
- Add jelly and honey to bread and crackers.
- Add jam to fruit.
- Use ice cream as a topping on cake.
Why on earth would someone want to eat sugar-containing foods if their body, and cancer, is going to feed off it? There are lots of ways to get the nutrients your body needs that don’t involve eating sugar or carbs.
I’ve been doing really well with how I am eating. Yes, I do miss eating french fries with the kids, and I do miss a few other things, but you know what? Cutting them out has been helping me be healthy. I am 1-year post diagnosis, and going strong. I am doing everything I can to eliminate the cancer that remains in my body. If that means cutting out carbs and sugars then yes, that’s what I’m going to do.
I had a PET Scan last Wednesday, and while the results were not what we hoped, it’s not terrible news either. The chemo I had been on (Taxol) was not doing enough to keep the cancer from growing. That means that there has been some growth, but it’s not a lot. We are not back to the starting point of the first PET scan, but it’s still not really clean either. My doctor is not overly concerned at this point. We talked about treatment options and decided to stop the current chemo cycle (I would only have 3 cycles instead of 4). I am going to start on a pill that should target a specific mutation in the tumor, which will hopefully be more effective.
Back in July, after being diagnosed my doctor sent samples of my liver biopsy off for genetic testing while the first round of chemo was started. I didn’t see the results of that testing until my appointment on Thursday. In September, I also had genetic testing done on myself to see if there were any genes that had the potential to cause cancer. My genetic test only revealed the NF1 gene. I mention this because while I don’t have the BRCA1 gene in my germline (in my blood/DNA) the tumor does have a BRCA1 mutation. This means that it can be targeted with specific medications. This also means that because the mutation is not present in my DNA its not something that I can pass down to my kids.
Along with the BRCA1 mutation, there were a few others identified, but we are not doing anything about them at this point. As soon as insurance approves the medication (and I am not worried about a problem there) I’ll start taking it. The other options I had were to continue the Taxol and do my 4th cycle OR have 2 cycles of the first chemo I had (AC). The problem with AC is that it can have problematic effects on the patient’s heart (so cardiology is consulted and echocardiograms are done to monitor). We (the doctor and I) agreed that the best course of action was to hold that in reserve for when it was really needed. At this point, I’ll start the medication and then have a PET scan in about 8 weeks to see how effective it is. I’m also getting an injection of something called Xgeva, which is intended to strengthen my bones (since the cancer had spread there, and can cause fractures and other issues).
Overall my doctor is very pleased with how well I am doing. She’s astounded that I’m not having issues with fatigue, nausea, or any of the other common issues cancer patients have. She’s also equally impressed with my white cell counts (chemo can cause significant issues with white cell counts being low). I attribute my normal white cell counts to a supplement that a friend of mine has given me. Its called 4Life Transfer Factor (and yes, I emailed my doctor before taking it).
1. Interval increase in size, number and/or FDG avidity of hepatic
2. Persistent foci of FDG avidity of left axillary lymph nodes.
3. Interval increase in size/number and/or FDG avidity of bony metastatic
4. New left lateral third rib fracture.
5. Again noted compression fracture of T11.
I met with my oncologist today. We talked about the results of my PET scan – basically, the chemo wasn’t doing enough to keep my cancer in check. It didn’t let it run rampant either, so that’s a plus. We are changing the plan of attack and I am going to start taking a pill that should target mutations in the BRCA1 gene.
Wait? I thought you said you didn’t have the BRCA mutation?! Well, yes and no. I don’t have the mutation in my blood (negative in the blood test). The tumor itself does have a BRCA1 mutation, along with the NF1 mutation (expected), and two other mutations. There is also a mutation in PIK3CA and PTEN.
The plan is for me to start taking Talzenna (talazoparib) because it can be used when BRCA mutations are present. At this point there is no plan to target the other two non-NF muations. After about 8 weeks on Talzenna I’ll have another PET scan to see what difference it has made.
This year I get to celebrate 4th of July with my family, instead of being in the hospital. I was there right at the start of my cancer journey to expedite care. The view of the fireworks 🎆 shows was great. I was sad that I wasn’t able to celebrate with my family.
This year, we are going to Denny’s to have supper and maybe catch a fireworks show from their parking lot. We started doing it because Mario has gotten scared one 4th of July, and for a long time was afraid of loud noises.