How crucial is the HAI pump?

[Jacques]

... Do you know what the suggested protocol after 6 rounds of oxaliplatin is for people who DON'T get the HAI pump? Just curious

I think that the suggested next available protocols for you would be found in the NCCN Rectal Cancer Guidelines, in Section REC-E-2, which is found on page 35 of the PDF document below:

Rectal Cancer NCCN Guidelines
https://www2.tri-kobe.org/nccn/guideline/colorectal/english/rectal.pdf

You are now on the CAPEOX + Avastin protocol, which is found on the previous page (page 34).

There are several options on page 35, including some that require knowledge of your KRAS mutation status. Do you know your tumor's KRAS mutation status?

[TinaFish]

Jacques, you're amazing.

I don't know what the KRAS mutation is. That's determined by genomic testing, correct? A month ago, I asked my oncologist if we could do genomic testing. She said, "sure, no problem!" A week ago, when I called to inquire about the results, I was told that it hadn't even been ordered. I'm discussing this, as well as other things, when I see her at my appointment tomorrow.

Oh, and yeah - on my other thread, I believe it was you who quoted me as saying, "I'll speak to her at my Chemo appointment." That was a week ago. She didn't even show up until my chemo was almost over. When it was over, she was meeting with someone else. I was paying a sitter to watch my kids and I was mad about sitting around indefinitely for her to grace me with her presence. I just left. When I try to discuss things with her on the phone, she always says that I should speak to her in person. It's really frustrating. I don't know what's wrong with a phone call.

[boxhill]

KRAS testing is standard basic testing on a CRC tumor as far as I know. It definitely doesn't require full-fledged genomic testing. It is performed by staining slides during pathology after your surgery. I got the results as an addendum with the initial pathology report while I was still in the hospital. Of course, you haven't had surgery yet, but I would think they could do it with biopsy samples. Which is apparently what they did since your sig indicates you know there is a mutation.

If you don't actually speak to your onc at every infusion--and that is quite common--are you being seen by a nurse practitioner after your bloodwork is done? I hope?

Does your practice have some kind of online patient gateway? If so, you can get onto it and look up your tests and reports.

I had more thorough genetic testing on both the tumor and on my blood (which I guess you would call genomic testing) because of the possibility that I had Lynch. Honestly, I think you would be better off getting a firmer grip on some of the basics rather than fixating on "genomic testing" as some magic key.

And, as I said before, you will probably have to get more extensive testing approved by your insurance company. That would be something to ask the doctor--or the insurance company--about.

[TinaFish]

I had a great talk with my oncologist today and I discovered that she's actually on top of all this stuff! She just hasn't been forthcoming about it. Honestly, I bet most patients don't ask about these things. I bet for most people, the information is kind of beyond their scope of understanding. It probably takes a different type of person to search out and join a forum like this. The vast majority of members on this forum, even those (like me) who aren't very educated about this illness, still appear to be of above-average intelligence, with good grammar, spelling, etc. So I assume we're different than the average patient.

She told me today that my CEA was 22 and now it's 11. She said that I have a "somewhat rare" KRAS mutation. And she referred me to a "very good" hepatobiliary surgeon at Cedars Sinai, Dr. Kosari. I need to see if he offers the HAI pump. But I would imagine that Cedars doctors would all be cutting-edge! Anyway, with my KRAS mutation, I mentioned to her that Folfoxiri was recommended, and she told me that since my diarrhea has been so bad, she doesn't think I can handle the "iri" part of it.

I have to figure out how to get this diarrhea under control. Today my tenesmus was really bad, but not as frequent. Lomotil and Bentyl were not doing s*** for me today. The gas and cramping reared their ugly heads later tonight, and my Buscopan had already arrived from Amazon, so I gave it a try. 30 minutes later, I'm feeling almost normal!! I love Buscopan!!

[boxhill]

Yay! Glad you had such a good talk with your oncologist. I agree with you: as I said earlier, I am absolutely certain that doctors are more forthcoming with patients who inform themselves and ask questions that show it.

Also great that you've found something that helps with the gas pain and bloating! I hope it continues.

For the diarrhea, have you considered trying immodium instead of lomotil? Often with anti-nausea meds, for example, people find that one works better than another for them. I don't think you have anything to lose by giving it a shot.

[Rock_Robster]

Hi TinaFish, well done - sounds like a very good session.

I’m very pleased you have a referral to a hepatobiliary surgeon at a high-volume hospital. I hope you have a fruitful discussion with them.

Best wishes,
Rob

[TinaFish]

Yay! Glad you had such a good talk with your oncologist. I agree with you: as I said earlier, I am absolutely certain that doctors are more forthcoming with patients who inform themselves and ask questions that show it.

Also great that you've found something that helps with the gas pain and bloating! I hope it continues.

For the diarrhea, have you considered trying immodium instead of lomotil? Often with anti-nausea meds, for example, people find that one works better than another for them. I don't think you have anything to lose by giving it a shot.

I have tried Immodium. I kept giving myself 1-2 pills every time I had diarrhea, and it took like four days for the diarrhea to subside! Four days of total lack of control, and you cannot imagine how many pairs of my underwear had to be washed. I need a medicine that will work quickly without constipating me. Hopefully Buscopan is the answer. I'm feeling crampy and gaseous right now, so I'm going to take some.

[MetastaticEquilibria]

Four days of total lack of control, and you cannot imagine how many pairs of my underwear had to be washed.

Let me put in a good word for adult diapers. They will save a lot of that washing. You can get them pretty thin these days, no one will know you’re wearing them.

[TinaFish]

Four days of total lack of control, and you cannot imagine how many pairs of my underwear had to be washed.

Let me put in a good word for adult diapers. They will save a lot of that washing. You can get them pretty thin these days, no one will know you’re wearing them.

Haha, I honestly thought about it. I was wearing them toward the end of my pregnancy with my first child. I was worried about my water breaking. It turned out that I had c-sections with both babies

The other issue with the frequent diarrhea is the skin irritation, though. You can use a squirt bottle every time, and dab very lightly to dry your skin, and still, with that kind of frequency, you're going to end up with raw skin. My skin even feels raw inside my anus, probably due to all of the high traffic. It's so miserable.

[ginabeewell]

Tina, I was just reading the ColonTown FB group for the HAI pump and it looks like NIH is doing a free HAI pump trial. Treatment would be free and in some cases it sounds like travel could be covered too?

Another option for you to explore possibly. Lots of love there for City of Hope as well.

[Jacques]

Tina, I was just reading the ColonTown FB group for the HAI pump and it looks like NIH is doing a free HAI pump trial. Treatment would be free and in some cases it sounds like travel could be covered too?

Another option for you to explore possibly. Lots of love there for City of Hope as well.

Tina -

Here is one of the ongoing HAI pump clinical trials that's currently recruiting patients. There may be others.

Hepatic Artery Infusion Pump Chemotherapy With Floxuridine and Dexamethasone in Combination With Systemic Chemotherapy for Patients With Colorectal Cancer Metastatic to the Liver
https://clinicaltrials.gov/ct2/show/study/NCT03366155

This trial is limited to 40 patients and is located in Bethesda, Maryland. If you are interested, you should first check the Inclusion and Exclusion criteria to see if you are eligible. Then I suppose that either you or your oncologist could contact the trial's contact person to see what the next steps might be.

The trial's contact information, e-mail address and telephone number are given here:

Contact Information

[boxhill]

have tried Immodium. I kept giving myself 1-2 pills every time I had diarrhea, and it took like four days for the diarrhea to subside! Four days of total lack of control, and you cannot imagine how many pairs of my underwear had to be washed.

Yikes! Okay, scratch that idea.

I have read that plain psyllium husk helps bulk up stool in cases of severe diarrhea.

[TinaFish]

Tina, I was just reading the ColonTown FB group for the HAI pump and it looks like NIH is doing a free HAI pump trial. Treatment would be free and in some cases it sounds like travel could be covered too?

Another option for you to explore possibly. Lots of love there for City of Hope as well.

Tina -

Here is one of the ongoing HAI pump clinical trials that's currently recruiting patients. There may be others.

Hepatic Artery Infusion Pump Chemotherapy With Floxuridine and Dexamethasone in Combination With Systemic Chemotherapy for Patients With Colorectal Cancer Metastatic to the Liver
https://clinicaltrials.gov/ct2/show/study/NCT03366155

This trial is limited to 40 patients and is located in Bethesda, Maryland. If you are interested, you should first check the Inclusion and Exclusion criteria to see if you are eligible. Then I suppose that either you or your oncologist could contact the trial's contact person to see what the next steps might be.

The trial's contact information, e-mail address and telephone number are given here:

Contact Information

So cool! Thank you!