Week 5 on Piqray

After consulting with my oncology NP, who also consulted with my oncologist, I decided to try taking Metformin, to see if it would positively affect my glucose (and insulin) levels. I can say that it did have a positive effect on my glucose. There was pretty much an immediate improvement! I am looking forward to getting the results of my blood tests for this week. I’m quite happy to see average levels of under 100.

Next Steps

So, I had an appointment with the NP who works with my doctor today. Things are going forward with the plan we already had in place. That is to say, start the Piqray. Now, the “Big 3” side effects of Piqray are:
1) High blood sugar
2) Rash
3) Diarrhea

The treatments are fairly simple. To treat the high blood sugar (non diabetics have had sugar levels in the 300-400+ range) Metformin is given. Now, Metformin is a generic name for the medication. The brand name is Glucophage, which I like. If you don’t know what it means, it is: gluco (sugar/glucose) and phage (from Greek: eating), or at least from as far as I can determine that’s what it means. Like how autophagy means “self-eating”

To treat rash, Claratin (Loratadine) is given preventatively.
To treat diarrhea, Imodium is recommended, as needed, but not proactively.

I am currently wrapping up a 72 hour fast, as I type this, with about 2 hours or so to go.

Fasting graph, for this 72hr fast (not quite completed)

I’m thinking that my numbers, while great, are not as slow as they have been on long fasts because I was not drinking green tea (unsweetened).

After this, I’m going to keep a close eye on my glucose, via the CGM and fingersticks, as I’m starting my new medication. I’m hoping that I am one of the few that don’t need Metformin. But I plan to track my glucose first, to see what it does, and then take the Metformin only if necessary. Because I have a CGM and do fingerstick tests I can easily keep on top of it, rather than just waiting for a week to do my labs.

On a side note, the pharmacy that supplies the Piqray sent a nice welcome kit. It’s far better than the kit I got with anything else!

Welcome Kit

Stay tuned for updates as to what my glucose does!

PET Scan #7

1. Improved left axillary lymphadenopathy and hepatic metastasis, as
evidenced by decreased size and FDG uptake, with demonstration of new hepatic lesions.
2. Mixed but overall mildly progressed osseous changes.
3. Stable mildly FDG avid left breast findings.
4. New 1 cm right hilar focus of FDG activity. Recommend attention on
follow-up imaging.
5. Stable cutaneous and subcutaneous nodules consistent with patient’s
history of NF1.

The Plan:
So, overall, the results aren’t too bad.  It’s still not as good as we’d like to see (meaning significant decreases and nothing new), but it’s not bad either.  There were improvements in some of the cancerous areas of my liver.  The plan is to stop IV chemo, as its fairly toxic (as all chemo is) for the amount of improvement that has been seen.  The plan is to start a combined injection and oral therapy.  The injection is something that will prevent the cancerous cells from taking in estrogen, or at least preventing them from taking in as much estrogen.  The pill is a targeted therapy, intended to seek out PIC3CA mutations.  The biggest side effects of the pill are high blood sugar (my doctor isn’t worried about this, as I’m eating low carb), rash, and diarrhea.  If my blood sugar happens to get high it would be treated with metformin, a medication commonly used in diabetics to treat hyperglycemia (high blood sugar).  The rash can be treated/pre-treated with an anti-histamine, like Benedryl or loratadine.
I had been expecting to have one more cycle of chemo before seeing my doctor, but she called me on the 26th to discuss the plan.  This is the same plan that we were going to implement after the January office visit, so its not like it was something unplanned.  I had actually expected to be starting it after the PET scan anyway.  It hadn’t been possible to get an appointment before January.

Thoughts – 12/18/19

I haven’t posted in a while so I thought I’d just throw something up here. I generally only try to post when I have something to say, but I know that people like to know how I’m doing and what’s going on with me.

That said, I’m feeling great. I don’t feel like I have cancer. I don’t have the fatigue or nausea that is so common. I’m eating well, and no one has voiced any concerns about my weight (concern for weight loss).

I found a great recipe for Keto Cinnamon Cheesecake bites online. I really recommend them. The one main change I made to them (accidentally) was to add the cinnamon into the cheesecake filling, instead of layering it. I’m going to be hard-pressed to keep these on hand, as everyone would gobble them up if I gave them half a chance.

I do have another PET scan on Monday, the 23rd. I’m expecting mixed results again. I can tell there is some reduction in my lymph nodes, but don’t have any idea what is going on in my liver. This time around I’m not doing a 72-hour (or even 48-hour) fast before my scan. The last time around I did a 72-hour fast and even though I ate the night before the scan my glucose was still 65. That didn’t sit well with the radiologist or doctor (the doctor wanted me to drink some juice so I wouldn’t pass out on the way home). I expect the report to be ready a few days after the scan, but don’t have a chance to see the doctor until January 9th. We could have maybe done the 2nd, but with some insurance changes they wanted to make sure I didn’t need to get other authorizations that might get delayed.

Chemo Follow-up

So, I started Cycle 2 on Oct. 28. This time when I asked for the pre-meds to be taken off my nurse was a bit hesitant. We talked about the different pre-meds and why I wanted them removed. While I wanted them all removed she wanted to compromise. I agreed and we decided to just keep the Zofran, for nausea control (even though I don’t have trouble with nausea). Zofran was much better than the Compazine, which we think caused some nasty side-effects (like trouble finding words when talking). November 4th is day 8 of Cycle 2. I’m hoping to have no pre-meds this time. We have a plan for a PET scan sometime towards the end of December, after my last cycle of chemo. There are several things planned as possible courses of action, but we just have to wait and see what the PET scan shows.

Chemo: Gemzar effects

So, I think I am actually experiencing one of the side effects of the chemo I’ve been given. It’s not something I would normally have noticed, but since I have a continuous glucose monitor I did. According to WebMD.com one of the common side-effects of Gemzar (one of the two chemo agents I’m being given) is high blood sugar!

This is yesterday and today. This week was Gemzar (only) and I had a coffee (labeled BPC).

Day of chemo and day after

This was last week, when I didn’t have any coffee (BPC). I had the Gemzar chemo and Carboplatin, and also dexamethasone (a steroid, which did raise my glucose).

Chemo and Pre-meds

So, yesterday was day 8 in my chemo cycle (Carboplatin/Gemzar). Day 1 was a week ago, and I really didn’t like how I felt afterward. I was given dexamethasone and some anti-nausea meds and those made me feel yucky. After chemo was done I felt tired and had trouble coming up with the words I wanted to use. It was a terrible feeling.

The dexamethasone is a steroid and it skyrocketed my glucose, even up to 5-6 hours after being administered. My glucose peaked at about 144 mg/dL around 7 hours after the steroid. I didn’t even have issues with nausea, so much so that I didn’t take all my anti-nausea meds.

This time (week 2) I asked for no pre-meds, which my nurse was happy to do. I also only had one of the two chemo agents (Gemzar). I felt great after. There were no glucose spikes, no cognitive issues, and no nausea. Overall, I’m of the mind to add medications in as needed, rather than pre-medicating and then taking things out.

Next session, in two weeks, I plan to follow the same routine of no pre-meds. I expect to have similar results, with little to no nausea. I’m very much a fan of listening to your own body. From what little I can tell, by feeling around my armpit, my lymph nodes seem to be smaller. That’s a good sign, meaning the chemo is doing its job.

Keto and Cancer – Science

Q: Does Keto create stress on the immune system, and allow cancer to grow?

The ketogenic diet does not create stress on the immune system.  According to Virta Health, and many other sources, the ketogenic diet is great for reducing inflammation.  If you’ve ever looked at side effects for chemotherapy and endocrine therapy for cancer, you’ll see that lowered white cell counts are very common.  In fact, its so common that doctors do chemotherapy in cycles, just to give the body a chance to heal and let white cells increase again.  The medicine I was just on (Talzenna) is so notorious for lowering white cell counts that there is a protocol for dose reductions.  I’ve been fortunate to be taking Transfer Factor Plus as an adjunct to my therapy.  The Transfer Factor has been supporting my immune system, along with the ketogenic diet.  In fact, my white cells have only just recently dipped below normal, even though I’ve been on Talzenna for a few months.  I’m also fairly healthy otherwise, in that I’m not getting sick with colds or fevers that could complicate treatment.  There is also a lot of anecdotal evidence about how people have felt much better on keto.  They have lowered inflammation levels and are in better health overall.

Question: Where do cancer cells get their food sources?

Many cancer cells feed off glucose.  This is well-known.  Point-in-fact, when you get a PET scan to stage and get information about breast cancer, what do they do?  They give you an injection of a radioactive sugar isotope.  Then they make you wait an hour while all the tumor cells take up the glucose so they can see how it lights up on the PET scan.

Is sugar the only source, no.  But it is the most common.

Read more:
Ketogenic Diets and Cancer: Emerging Evidence

A Ketogenic Diet Reduces Central Obesity and Serum Insulin in Women with Ovarian or Endometrial Cancer

Ketogenic diet in cancer therapy

Ketogenic diet and cancer