So, I’ve basically been in the hospital since March 6.
March 6-7 held in ER for observaton. March 7-14 full Hospital Admit. March 17-19 full Hospital Admit. March 19 to current.
I was able to be released on the 14, in time for Opening Day for baseball. Mostly I felt OK, but was just tired. I ended up going back for a short stay. The doctors are really trying to get my electrolytes under control. The biggest is Calcium, which has been really high.
I’ve also had paracentesis several times. March 18 removed 3.1L of fluid. March 21 removed 4L of fluid. March 25 removed 3.8L (think 2 2L bottles of soda. March 30 removed 3.7L of fluid
So, a few of of the hardest things since being here are not getting enough/regular sleep. Eating keto, they do try but they don’t quite get it, and my 1.5 Liter fluid restriction. 1.5 Liters really isn’t much fluid. Thats only about 48 ounces of fluid over 24 hours. If I feel thirsty then I have to ration out my intake or eat fruit cups, because they don’t count as fluids (even though they have lots of sugar). Yogurts counts similarly.
The past week has been exhausting. I went to the ER on Friday, the 13th. They tested my electrolytes and discovered they were very low, so I got lots of IV fluids. They ended up discharging me in the morning, but by afternoon I was feeling yucky. I went back to the ER and they did more tests and decided to admit me (which they should have done on Friday).
Lots of lab tests and imaging later they realized the cancer in my liver spread a lot. So, I started the “heavy” chemo again. I haven’t been eating much over the past week, mostly due to feeling very bloated in the stomach/abdomen. I look and feel like I could be 7 months pregnant! But of course, this is not true. My energy has been really zapped lately, so I haven’t been walking much. I’m hoping that between the chemo and bowel treatments I’ll feel better soon.
I know that its been a while since I’ve written an update. I have some energy still, but I do feel tired too. Currently, most of my electrolytes have been improving, but my phosphorus still seems to be low (they are not sure why). I’ve been put on fluid restrictions for 24 hours a day. This means that over 24 hours I can have no more than 2 liters of ingested fluids (including medicines). This really sucks because I’d really like to have Sugar Free Tea from Starbucks (but I could easily drink 12-16 ounces of it in under an hour. 2 liters is the equivalent of 64 ounces of water (your basic target of 8 8oz cups in a day). In the hospital when you don’t sleep much and the air is dry its really easy to want to drink more, especially when you are in a bed that is not nearly as comfortable as your one at home. Right now I have about 4 hours left in my Fluid Restriction day, and I’m already down to only a few teaspoons of fluid left. 🙁 They are mostly worried about my sodium levels, which are pretty close to normal now.
My heart rate is still up in the 110s and 120s, so they are temporarily keeping me on the cardiology floor, where they can hook me up to remote telemetry (same thing like at the ER when they put the 4-5 stickers on you and hook you up to a monitor on the wall.
So, the basic plan is for me to have a baseline heart echo and then start the same chemo I first used, which seemed pretty effective at the time. By then I should be up on the oncology floor, and hopefully the bed will be more comfortable. After 2 rounds of the chemo (AC treatment) I will be switched over the a cardio-protective version (it takes longer to start working, which is why they aren’t starting with it).
So the doctors think that maybe this is a late side-effect of the Carboplatin/Gemzar I was taking.
IMPRESSION: 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.
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.
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.
Had my PET scan today. They didn’t like that my glucose was 65 before the scan. The radiology tech had to call the doc to confirm it was OK to do the scan. Its actually a bit low, by a few points (they want a minimum of 70). They actually wanted me to drink some juice after, which I declined, saying that I don’t do juice or sugar. They were concerned that I would pass out on the way home. They don’t get that I run on ketones (maybe I should make a shirt that says that )
The blue line is yesterday (when I broke my fast at supper). The red line is today, I’m kinda surprised at how my glucose shot up after waking. I expected it to come back down, but didn’t think it would dip under 70. I do expect it to be a bit weird today, and maybe tomorrow as I eat again.
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.
A DEXA scan is a special type of dual x-ray that can be used to measure things related to body composition such as bone density, muscle mass, and body fat.
Resting Metabolic Rate (RMR) is also important to know because it gives you information about how you burn calories and how many you burn at rest.
I just had an RMR and DEXA done:
Results – RMR:
Respiratory Exchange Ratio: 0.71
Substrate Utilization: 1% carbs, 99% fat (this says that I am very fat adapted)
RMR estimate (calories): 1380
% predicted: 119%
RMR DEXA estimate (calories): 1155
Daily caloric need (estimate, light activity): 1840
DEXA results (not full):
Body fat: 31.3% (high end of normal)
NHANES Fat Mass Index: 7.25 kg/m² (normal)
Fat Free Mass Index: 14.3 kg/m² (low)
Visceral Adipose Tissue: 65 cm² (normal risk)
In my case body fat is high because my muscle mass is low, not because I’m fat. My goal is to build muscle by doing strength training and then retest in 3 months or so. Fat adaption is a sign that your body has learned to use fat for energy, as opposed to using carbs for energy. I was told that I have a very high metabolism.