My CRC with liver mets journey

[LPL]

My platelets went up - by 2. Drinking all that carrot / beet / kale / spinach / orange juice must not have helped too much. So I didn't clear for my last chemo treatment.

Per Dr Kingham, don't want to push back surgery, and that last chemo less critical now that they want to hold on the liver resection. (He called the other day to confirm he wants to do HAI pump placement and colon first, and then the resection. I can't remember if I updated that.)

So here starts another 4 week chemo break leading up to 3/27 surgery. Trying to make plans to enjoy it. Eat some sushi once chemo has cleared my system and drink some wine before it's off limits with the pump installed!

Traveling to Costa Rica for a work offsite next week, so hopefully that will get me off to a strong start.

I’m just wondering why you are not allowed to drink wine when you have had the pump installed?

[ginabeewell]

BTW, where is your colon primary tumor? Sounds like possibly the right side?

You'd think I would remember that. I had the tumor in one side and the infection in the other, and now I can't keep them straight! Does one side or the other make for easier recovery, etc?

I’m just wondering why you are not allowed to drink wine when you have had the pump installed?

I think it is just a matter of not taxing the liver with anything "extra" to process. Which makes sense while you're going through chemo, certainly. What doesn't make sense to me is not drinking when you are just flushing it with saline every two weeks after chemo is done. That is something I want to double check when we have our pre-surgery consult on 3/11. It doesn't make sense to me...

[Pyro]

It’s funny how recommendations turn into facts. I’ve had about every treatment for CC not the pump!) and never been told I had to cut alcohol. Unfortunately, for a very large percentage of us, we will deal with these treatments forever, this is me living life. FWIW Gina, I have no idea what “side” my tumor was on. I’m not a Dr and it doesn’t really matter, take it out!

[FightCRC]

I think it is just a matter of not taxing the liver with anything "extra" to process. Which makes sense while you're going through chemo, certainly. What doesn't make sense to me is not drinking when you are just flushing it with saline every two weeks after chemo is done. That is something I want to double check when we have our pre-surgery consult on 3/11. It doesn't make sense to me...

The chemo stays in the liver the entire time. The saline flush is to keep the pump filled (so it doesn't dry out) and the catheter clear. But the FUDR is still doing its thing in the liver.

Otherwise, yes, the liver is already under extreme stress due to the pump treatment so don't want to add to the burden. As well, it can impact values, which are crucial for Dr. K to get accurate reads. In the end, sucks to give up things we enjoy, but if you're going through the trouble of doing all this...gotta keep big picture in mind, always.

[ginabeewell]

I think it is just a matter of not taxing the liver with anything "extra" to process. Which makes sense while you're going through chemo, certainly. What doesn't make sense to me is not drinking when you are just flushing it with saline every two weeks after chemo is done. That is something I want to double check when we have our pre-surgery consult on 3/11. It doesn't make sense to me...

The chemo stays in the liver the entire time. The saline flush is to keep the pump filled (so it doesn't dry out) and the catheter clear. But the FUDR is still doing its thing in the liver.

Otherwise, yes, the liver is already under extreme stress due to the pump treatment so don't want to add to the burden. As well, it can impact values, which are crucial for Dr. K to get accurate reads. In the end, sucks to give up things we enjoy, but if you're going through the trouble of doing all this...gotta keep big picture in mind, always.

That makes sense while treatment is happening. I'm wondering what happens post treatment when the pump is still in the body but ONLY getting flushed. That's what I am not quite understanding.

[FightCRC]

That makes sense while treatment is happening. I'm wondering what happens post treatment when the pump is still in the body but ONLY getting flushed. That's what I am not quite understanding.

Ah, OK. I thought you were making a distinction between the two weeks with FUDR, vs. the two weeks without, during treatment.

Don't know if alcohol is allowed after treatment is done (fingers crossed for all of us to get there with good results!). I would guess that it may depend on each individual patient; for example, I know of patients who have had to continue on Ursodiol long after active treatment is completed, to help normalize liver values. I suspect that for those patients, alcohol is still probably not a good idea. But hopefully your doctor can tell you, one way or the other.

[radnyc]

On the drinking thing, as much as I enjoy an alcoholic beverage, for the first two years with the pump I abstained. Non-alcoholic beer occasionally. Yes the idea is to not stress the liver, it's getting hit with massive doses of poison, ehr chemo. After two years, you can pretty much go back to your old self, as long as you're not still getting chemo.

[ginabeewell]

On the drinking thing, as much as I enjoy an alcoholic beverage, for the first two years with the pump I abstained. Non-alcoholic beer occasionally. Yes the idea is to not stress the liver, it's getting hit with massive doses of poison, ehr chemo. After two years, you can pretty much go back to your old self, as long as you're not still getting chemo.

Ok that makes me feel better! Not (too) worried about abstaining during chemo. Have one trip to Italy where I may be a little sad, but manageable. : )

[boxhill]

FWIW Gina, I have no idea what “side” my tumor was on. I’m not a Dr and it doesn’t really matter, take it out!

Well, actually there is a growing body of research and information about the difference between right and left side tumors, and it definitely CAN affect course of treatment.

But if you don't want to know, that's completely up to you.

[ginabeewell]

FWIW Gina, I have no idea what “side” my tumor was on. I’m not a Dr and it doesn’t really matter, take it out!

Well, actually there is a growing body of research and information about the difference between right and left side tumors, and it definitely CAN affect course of treatment.

But if you don't want to know, that's completely up to you.

I actually remember talking about it at the beginning of my journey. We talked about sigmoid which means one side or the other, and it did impact my treatment as I recall - he thought it was likely that my genetic testing would be what it did turn out to be as a result. Just now can't remember which side that actually was!!

[boxhill]

The sigmoid colon is on the left side.

[LPL]

FWIW Gina, I have no idea what “side” my tumor was on. I’m not a Dr and it doesn’t really matter, take it out!

Well, actually there is a growing body of research and information about the difference between right and left side tumors, and it definitely CAN affect course of treatment.

But if you don't want to know, that's completely up to you.

I actually remember talking about it at the beginning of my journey. We talked about sigmoid which means one side or the other, and it did impact my treatment as I recall - he thought it was likely that my genetic testing would be what it did turn out to be as a result. Just now can't remember which side that actually was!!

What did your genomic testing show Gina?
It sounds as you know even if it is not in your signature.
I mean MSI status, Kras mutant?, Braf mutant? etc. Important things to know as I understand it. Also what kind of cancer? Adenocarcenoma or ...

[ginabeewell]

What did your genomic testing show Gina?
It sounds as you know even if it is not in your signature.
I mean MSI status, Kras mutant?, Braf mutant? etc. Important things to know as I understand it. Also what kind of cancer? Adenocarcenoma or ...

Adenocarcenoma
KRAS and BRAF negative / wild type
MSI stable / low with 90-95% of tumors stable / low

I can add to my signature if that's helpful background for readers.

[juliej]

Adenocarcenoma
KRAS and BRAF negative / wild type
MSI stable / low with 90-95% of tumors stable / low

I'm the same: KRAS and BRAF negative and MSI stable. That's a good genetic profile in general, even if MSH patients have more immunotherapy options right now.

Sorry you can't have wine when the pump is in place. It's a small sacrifice to get rid of the cancer, although it's hard to imagine a wine spritzer on occasion would hurt that much! You also can't scuba dive, sky dive, or use hot tubs/saunas. Just think of your cancer-free future though and you can get through it!

Juliej

[ginabeewell]

I'm the same: KRAS and BRAF negative and MSI stable. That's a good genetic profile in general, even if MSH patients have more immunotherapy options right now.

Sorry you can't have wine when the pump is in place. It's a small sacrifice to get rid of the cancer, although it's hard to imagine a wine spritzer on occasion would hurt that much! You also can't scuba dive, sky dive, or use hot tubs/saunas. Just think of your cancer-free future though and you can get through it!

Juliej

No alcohol during chemo is ok by me. And I can live without a hot tub for a few years! Plenty of inconvenient stuff associated with chemo in general, come to think of it, and so far dealing with it all.

All that said, I plan to enjoy my chemo break pre-surgery as much as possible. I've been in Costa Rica for a corporate leadership conference, and the food at this resort is amazing - they grow 70% of what they need on the farm here, so the vegetables have been amazing, and I have been enjoying them all!

I also called ahead to book two personal training classes to start strengthening my core. So glad I did that and hoping to maintain the momentum at home.

One of our sessions involved a meditation session, and afterwards the facilitator asked us about our experiences. I talked about how I had such a clear sense of purpose and direction at work, but sometimes felt I didn't have the same with my family, and I worry it's why I lean into work. In my head I was thinking, what if I don't have enough time to raise my kids?

The poor facilitator didn't have the context, but everyone else in the room did - as tears were streaming down my face. I looked around and saw each of my direct reports crying as well, and a few others among the group. Several people came up to me before the breakout session, and I got hugs and Kleenex and love.

It was hugely emotional and apparently powerful for everyone to see me being vulnerable and frankly thinking of their own family thru my lens - several people told me this later. One direct report told another, "We have been taking cues from Gina, she's been so strong, and that's how we have interacted with her. It was so good to be able to feel this and be in it with her in that vulnerable moment."

I feel so lucky to work in an organization that honors this type of experience and is supporting me through it. The folks in the NY office (whom I don't know as well) were all asking what they could do while I was in town for surgery. I told them find me good bone broth for my post surgery liquid only diet! They also promised to figure out business reasons for me to be in NY so they my company covers my travel for upcoming chemo treatments there. : )