A big fat update

Real Tar Heel

It's been a while...

So, I died. Yep, you read that right. I’ll explain.

For those who don’t know, you can read about my previous experiences in my bio (I hope most of it remains there since the site update). In short, I have Metastatic Colon Cancer with spread to the liver. I was “fortunate” to have relatively few mets (one, then three, which were removed via surgery). First diagnosed in 2019.

For the various side effects related to chemotherapy (first neoadjuvant, then later to stop tumor growth), I had been prescribed a number of medicines that I didn’t like. I had chemo-induced diabetes, which I had under control, like as if I never had the problem (was never diabetic before cancer). However, in the fall of 2021, an NP prescribed dexamethasone for fatigue. That negatively affected my blood glucose levels. They started to skyrocket. I alerted my docs.

(As an aside, those on here who think there’s a link between blood glucose and cancer, I might be your case study. My CEA was exploding at the same time as my blood sugar levels).

In January, I had a seizure, at least one. My wife called the ambulance and they took me to the hospital. I wasn’t breathing. I was in a coma for two days. Super high blood sugar can cause seizures.

You may find it to be a(n) (un)happy accident, because an MRI revealed a small tumor in the brain. Symptoms of diabetes and a brain tumor are extremely similar as it turns out.

After I got out of the hospital in a couple of weeks, I got one shot of radiation to the brain, which was a success. There’s been no signs nor symptoms of a tumor since.

However, the FOLFIRI (with Avastin) was no longer controlling tumor growth. The four spots in the liver increased in size, the largest grew by two CMs. (For CEA watchers, my numbers dropped by about 60% as the blood sugar levels returned to normal….)

So since then, I’ve been waiting on the recommended waiting period before going to Lonsurf if they can (a beat up liver may prevent me from taking that). I’m also on a waiting list for a trial.

I have not been dealing with significant side effects from tumors other than fatigue from the myriad of drugs they’re giving me for whatever reason. I would say that in fact I was feeling good overall, able to run and go to see my kid play soccer.

I don’t know what’s going to happen moving forward. The radiologist and neurologist are satisfied that the tumor they saw are not an immediate danger. I’m of the opinion that the seizure was a function of a blood glucose level over 600 (!) and not the one 9mm tumor, but I suppose it’s good they discovered it. We know it is rare for metastasis to break through the blood brain barrier, and in the rare cases it happens, no one knows why….

I’ll be back to the oncologist next week. If I have to speculate, they may recommend some kind of palliative care if my liver starts acting up. I don’t expect them to get aggressive now after years of using “standard of care” treatments.

I knew what was up when the tumors recurred last summer. I told the doc I wanted to stick around until the fall of this year since my son will be leaving for college. Looks like I will probably get there, after that, who knows?

I’d like to be able to give advice to those new to the experience or rethinking treatment but I’m not sure I’m a good case. I never found the side effects that many have discussed on here and elsewhere were that overwhelming. If an NP asked me if I was feeling nauseated, I’d say yes, but it was generally mild. The medication for those side effects was not mild at all, and I sometimes felt like it was too much. In the beginning, I made the assumption that they all know what they are doing and I should just do what they say, but perhaps not.

Don’t remove your body’s ability to let you know what’s going on inside you. Don’t let the meds make you stick to the couch. Try to get away with taking as little meds as possible and give your body a fighting chance to do what it does.

I woke up from the coma in a couple of days because, as Goldblum said in Jurassic Park, life will find a way. Your cells, organs, etc, find a way to keep going no matter what. It’s just an irony that the same fighting spirt makes the cancer cells do the same thing. Cut off their Oxygen supply or inhibit their reproductive capabilities, those cells seem to find a way around that. Is that to say there is no hope? Nah, if medication can help us manage blood sugar regulation, someone’s going to sort out a way to manage cell growth regulation, too. Just might take a while.

MandiePandie

Woah woah woah! So you alerted your docs to your glucose climbing but they didn’t start treatment? Did they biopsy what was in your cabeza or just assume it was a met? I know they are on the more rare side with crc but of course those kinds of stats don’t matter when you’re the one going through it. And going through it you have I might add. I’m glad you made it here to tell the tale. Targeted cell growth regulation does seem to be the general goal, I hope it comes sooner rather than later.

abita

I am so sorry. That is a lot. I can't digest even reading it a few times, so I can only guess how awful living that was.

So what options are there? Lonsurf, Stivarga, or a trial? Are the liver mets located so that surgery or intervential radiology procedures are not options. I know they prefer chemo when metastatic, but if meds aren't an option, perhaps removal is now an option.

I am so sorry. I too do not have many options left for me, but what you went through is simply awful, which is an understatement

Real Tar Heel

https://csn.cancer.org/discussion/comment/1696098#Comment_1696098

This was the second time, actually. First time, they started treatment, got the diabetes under control rather quickly. Second time, I don't know what they were thinking and that may be a discussion we have for my next appointment with the endocrine specialist. First order of business for me was to get the BGL under control to rule that out as a contributing factor.

They did not biopsy the brain tumor to my knowledge, there was no record of such a procedure. I was not conscious so I relied on my fam to tell me what was happening and well they had a lot of things on their mind, like, is he going to wake up?

Real Tar Heel

https://csn.cancer.org/discussion/comment/1696100#Comment_1696100

Thanks abita. They are considering Lonsurf and I am already on a waiting list for a trial.

I have already had two procedures on the liver, one RFA to the one freakin' met I had two years ago and an open surgery following the first recurrence. I don't believe my team was thinking surgery was the right move since I'd had two recurrences. The locations of the tumors was not what they were worried about. They may change their mind if my liver starts acting up.

I'm game for whatever treatments they think will help me make it through the summer. I don't really care about side effects anymore, I feel like I'm a pro, lol.

I'll be following your reports on how Lonsurf treats you if you feel like telling us.

abita

https://csn.cancer.org/discussion/comment/1696124#Comment_1696124

Sure, and always feel free to ask. I am still working full time, and I don't post as much as I used to

Trubrit

Oh my word! RTH, what a journey you have been on. Like Abita, I had to read it twice just to let it sink in.

You have a great attitude, and I know that along with whatever treatment you move forward with, it will take you into the fall, and then, of course, you will want to see that your boy gets on well college. There is always more ahead that you want to 'stick around' for.

Thank you for your update. I wish it were better.

Tru

SnapDragon2

Thank you for sharing!

It is good to show real experience first hand on how treatments affect the body and the person. To put real thoughts and feeling in print opens up the life of a cancer patient for others to learn/know what to expect maybe.

Real Tar Heel

A little update, saw the oncologist today, they are in an "if it ain't broke don't fix it mode." Obviously it's pretty broken, lol, but they are going to wait on starting a new treatment since I am not currently experiencing any terrible side effects and my blood work looks normal save a low RBC. If the next scan shows a situation that they feel needs to be immediately addressed, they will start Lonsurf. If not, they'll give me a few more weeks. The trial is not part of the treatment picture at this time. There may be others.

Thanks to everyone for the encouraging words. The steroid I was on had me on a high, and mentally at least the care-free feeling is the only good lasting side effect, lol. Coming to the board and reading what you all have to say is the best replacement.

Trubrit

We will wait with you, to see what happens or rather, what doesn't happen. Hoping that all will stay stable.

Thank you for the update.

Tru

Tueffel

You had some difficult weeks but I hope you are feeling better.

How can I say it in a nice way with your blood sugar level? I read that and was like 'what?!' One of the most important things we had to learn about cortison/steroids is hyperglycemia or high blood sugar. I had to learn most side effects just for this group of drugs. You should definetely try to get your blood glucose level get checked. Maybe consider to get these glucometers for the finger tips?

When I read your text, I felt that death was knocking at your door but you didnt hear him. You fought harder than the cancer when you were in coma. Just enjoy every day even more now!

Real Tar Heel

Thanks, Tueffel. I definitely check my bgl. After the first event, when they sent me to the endocrine specialist, I got it under control quickly. So I was not checking regularly. My A1C was around 5! I think that may have made them pay less attention to me then they ought to have when I told them it was rising. Now that I'm off the dex and the withdrawl is done, I'm feeling more myself. I'll start exercising and take your advice to enjoy my days.

beaumontdave

Interesting that they were using a steroid for fatigue, I would have thought dexamethasone too risky over a longer period for that kind of treatment. I'm glad you're here and holding up after all that, and I'm wishing you better and better days and results.................................Dave

Real Tar Heel

https://csn.cancer.org/discussion/comment/1696235#Comment_1696235

Thanks, Dave.

PamRav

Wow, that was quite the adventure.

Glad to hear that things are better now. May they always be so.

pam