Recently Diagnosed with Stage IV Colon Cancer

[Paradise2020]

My DH has recently been diagnosed with Stage IV Colon Cancer. He is 62 with no family history that we know of. We are shocked and scared. His diagnosis is: Malignant neoplasm of ascending colon (HCC), secondary liver cancer (HCC) and malignant neoplasm metastatic to lung, unspecified laterality (Hcc).

After his colonoscopy biopsies came back as cancer, we went to a Colon and Rectal Surgeon Dr. Steven Wexner at the Cleveland Clinic in Weston Florida. He looked at the various tests that DH had been through and said he needed chemo right away. He referred us to an oncologist Dr. Nagarajan. The oncologist told DH that his cancer was inoperable. He showed us the Pet Scan result and explained what it showed. The care that we have received from everyone at the Cleveland Clinic in Weston has been wonderful. They are so caring and efficient. We have faith in the doctors and nurses there.

A few days after our first appointment with the doctors a port was put in and a liver biopsy was taken. He had Right Gene Testing from Oneome?

DH started chemo June 2, 2020 the day after the port was put in. His chemo is: Oxaliplatin and Avastin for 2 hours and gets sent home with a pump for 2 days of 5-FU. He's starting his 4th of 6 infusions tomorrow. Also for the first 4 weeks he had been given an iron infusion once a week.

The first 2 chemo treatments and iron treatments were tough with stomach pain and with minimum vomiting, extreme fatiuge . His 3rd was no pain and no vomiting. We looked at each other and thought how lucky we are that it wasn't too bad. We're hoping tomorrow isn't as bad, but realize ya just never know.

The nurses have offered him hydration after his pump is removed. He hasn't taken it yet. Should he? Not sure what that's all about.

I found this forum and have read and read and read. All of your posts and stories have helped us so much and I wanted to thank you. We don't know what the future will hold, and we're doing the best that we can to live every day the best that we can.

Does anyone have any advice, tips, words, etc. for us?

[boxhill]

Let me preface this by saying that I am definitely NOT a doctor.

I always have a problem with descriptions of tumors as "inoperable," when what they really mean is that "we can remove it, but it won't be fully curative by itself because of mets elsewhere." I wonder whether it would not be better to resect the primary and whatever mets can be removed at the same time, sample a good number of lymph nodes, do genetic testing, then go after the remaining cancer with chemo/SBRT/resections and whatever other means are possible.

In many ways I feel that I was lucky because my cancer was diagnosed when I had an obstruction that HAD to be dealt with. So they removed everything that was detectable at the time and we proceeded from there. (Admittedly, I did not have lung mets.)

I would want to have a long and very specific discussion with a surgeon AND oncologist about developing a multi-step plan to get to NED.

BTW, if your H's tumor is right-sided, there is a higher chance that he is MSI, in which case immunotherapy as the first line is now an option.

[Gravelyguy]

Hi 2020,

Sorry for your husband’s diagnosis. To answer the hydration question. I would have him take it. With the oxi part of his chemo, it is often difficult to get enough fluids in. Many people develop a cold sensitivity that makes drinking more difficult. The worst I felt during treatment was the one time I got dehydrated. It seemed like my whole body was cramping up. Thankfully a little iv fluids and I felt much better.

With a stage 4 diagnosis, I would definitely get a second opinion from a different major cancer center. My local oncologist told me he would try to keep me comfortable for as long as he could. I got a 2nd opinion at Mayo and they saw an easy path to NED.

Hope this helps,

Dave

[Paradise2020]

Thank you both so much for your responses and insight.

I will ask his doctors about surgery. Also appreciate the hydration info.

When the doctor said inoperable my first thought was why. The surgeon Said he could fix the colon tumors, whatever that meant, but that he needed chemo first. The oncologist said it was inoperable.

I read on the m d Anderson website that it's now thought chemo first before surgery is a better way to go?


It was such a whirlwind we didn't know what to ask. Now we know a little more.

I'm learning...

Hubby is on his 4th of 6 treatment. Should be done August. At that time a petscan will be done to see where everything stands.

We live in southwest Florida. Is the mayo clinic in Jacksonville a better place?

[Monimom]

Hi there,
You have basically copy pasted our story, my DH is 57 no history in his family, he's also stage 4 with multiple liver mets...( no lung mets) we were also told inoperable. My DH just had treatment # 15... he started with the same regimen... Avastin, Oxaliplatin & 5FU... they dropped the Oxali 4 treatments ago as he had been getting neuropathy in his feet & fingers.. he's handled all of this amazingly... we haven't had any surgeries other than the port and one biopsy of his liver, my DH was diagnosed in urgent care , he had a back ache...this is undoubtedly a humbling and time stopping diagnosis, trying to navigate all of this is hard, it is wonderful to all be able to share and lean on one another. We have faith in God , he is our rock. I don't have nearly the experience many here have , but feel free to message me anytime.
sorry that youre here, but glad to meet you,
Moni

[Paradise2020]

Monimom: Thank you for sharing. So far my hubby's only "surgeries" have been the port and one biopsy of his liver also. He's got the chemo pump on as we speak. This will be round 4 finished out of 6 rounds. I am anxious about what his petscan will show .

Have your hubby's doctors every recommended more surgery as a lot of people here have had? I'm reading as much as I can here and on Dr. Google. LOL

I wish you much luck with your situation and will be praying for you.

[claudine]

Welcome to the forum Paradise2020, although I am sure you'd rather never have had to visit, like all of us here. But you will hopefully find it a great source of information and comfort.
One quick word of caution regarding oxaliplatin - it tends to cause peripheral neuropathy; we were not aware of how bad it could get, and when DH started feeling lots of pain in his feet and hands after the 4th infusion, we did not ask for a reduced dose for the last two. As a result, he now has permanent neuropathy in his feet (his hands pretty much recovered, fortunately; but it's been almost 2 years since his last oxi infusion so improvements in his feet are likely to be minute and slow). Folks have posted here that using cold pack during the infusion helps fending it off; it's definitely something to be aware of, as it's not fun to live with... But, maybe your husband won't have that problem!
Good luck with everything, I hope the chemo does a number on your husband's tumors and that he eventually gets cleared for surgery!

Claudine

[Rikimaroo]

Dr Nagarajan and Dr. Steven Wexener are my doctors. I am seeing Dr Nagarajan at Cleveland Clinic in West Palm Beach, he is there on Wednesday. Everything there telling you seems right, there extremely quallified. Dr. Wexner is one of the top surgeons, world renowned for colorectal cancer.

I didn't listen to Dr. Wexner because I am dumb and didn't do the first surgery, which possibly would of kept me cancer free and now I am stage 4. I had a met to the liver, but they did resection of liver (dr. simphendorfer) and Wexner did my LAR. Your husband is in a different situation then me. He has colon cancer, I had rectal. Dr. Nagarajan is going to do everything to shrink those tumors and it is tough. Chemo is absolutely so hard. I just did my 3rd round of Folfiri last Wednesday. I have one more, but chemo is cumulative, they get worse after every treatment. It's one week today and I am still having hard time eating, even though around this time I am good to go.

Good Luck!!

Let me know if you have any questions. But You have the best of the best.

[NHMike]

I had rectal cancer, not colon cancer. The reason for chemo first for rectal cancer is that it makes the surgery easier as there's less to remove and potentially more that can be saved. Cleveland Clinic is highly regarded for cancer care. I'm not sure why it is inoperable unless it's gone through a wall or something else is involved but the doctor should be able to explain why. I have emailed questions to my doctors in the past when I had questions. I didn't necessarily expect a response but they did get back to me eventually. I also read my pathology reports - they can be very hard to understand but it may shed some light on why the doctors think that it's inoperable.

Also, the determination on whether something is inoperable is made by the surgeon.

[Paradise2020]

Thanks to everyone again! It is nice to know that someone else here has the same doctors as hubby. I can email them any time with any questions, they really encourage it. Hubby sees the onc before every infusion. I am definitely asking a lot of questions for the doctors after hubby gets his scans.

For some reason the last two rounds of chemo hubby had were so much better! Honestly, I was surprised since I thought it would get worse as time goes on. He has had no tingling in his feet and minimal problem with cold. Time will tell. I'm hoping he gets through his 6 rounds without many problems. We are well aware of what can happen....

I will continue updating everyone and will have many questions to come. It is comforting to hear about everyone's experiences. It gives me hope.

[Rikimaroo]

If Dr. Nagarajan said its inoperable, its because they have Tumor Board Meetings every Monday and discusses the case of your husband. Steven Wexner (surgeon) is in there too. So he must of told them that, but you should confirm with him. Hopefully they can shrink the tumors enough where they become operable. Like NHMike said though if its in some bone or something that's not operable.

Keep us posted.

[boxhill]

Get copies of his radiology reports and biopsy pathology report. Find out whether they have done the standard preliminary genetic testing, and if so what the results were. If they haven't done it, ask for it to be done. I would think about asking the oncologist WHY the surgeon wanted to do chemo before surgery, and what the specific goals of the chemo are.

BTW, the regimen your H is on is FOLFOX with Avastin.

[Paradise2020]

Thanks again everyone. Have lots to discuss with the doctors. Yes I know that there is a meeting every Monday to discuss hubby's case. We got a call from a doctor from the meeting confirming that hubby doing chemo is the path right now. First when we saw Dr. W he was the one that said we needed chemo first. He got us an appointment with Dr. N three hours later. It was our initial visit with both doctors about this and the first we heard about hubby's stage 4 diagnosis. We didn't know what to ask them. Now we do! Learning as we go along.

When hubby finishes his 6th chemo and scan is done and we know the results, we will be discussing with the doctors the next step. We know more of what to ask now. Can his cancer in the colon be operated on now and why. If Dr W can operate on the colon, is chemo next to try to zap the rest of the cancer? What about a Hai pump for the cancer in his liver? What about immunotherapy? I really don't know much about all of this, but it's some things I picked up here. Oh Boy, this is crazy. LOL

I know they did a RightMed Gene Report. His CA19-9 result 2 days ago was 31. Before Chemo it was 50. In the notes it said the normal range is less than 34. Good? I get the bloodwork and all the reports and it's pretty confusing to me. The onc said he is very pleased with hubby's cancer number which has gone down? Is that the CEA? I believe it is 4.5. The onc also told us recently that he's still waiting for some genetic testing results.

Yup, he's on Folfox with Avastin and oxiplatin?

[boxhill]

To be more precise...Oxaliplatin is part of FOLFOX: usually an infusion of premeds such as steroid and anti nausea med, then infusion of oxy and leucovrin, lastly a bolus of 5FU followed by about 46 hrs of 5FU on the pump. The Avastin is extra.

BTW, lots of people get a bag of fluids when they come in to get their pump off. Can't hurt!

It sound like you two are really getting up to speed! I had no idea what to ask at first either, hardly anyone does.