Dad no longer NED

[floss32]

Hello everyone,
I have not posted in a while but unfortunately, I need support once again. My dad has been NED since 3/11 but at his last check his CEA # jumped from 3 in Nov to 13 in May. Oncologist ordered a CT and it was clear NED. Then oncologist ordered a PET and sure enough a liver tumor 3cm lit up, "clear" everywhere else. Oncologist didn't say much at PET appointment because I asked right away do we need to go back to Liver surgeon to see if they can operate and he said sure why don't you do that. We went back to the liver surgeon, but he said it was in between 2 major blood vessels and could not operate. Liver surgeon said he would speak to Radiologist to see if they could do Sir Spheres or targeted external radiation. Waited for response and then was sent an e-mail from his nurse that it was best to do more chemo.

Question-- Did his oncologist know that this tumor is in a bad/terminal location and did not want to tell us? I would think that his Oncologist would have enough experience and know if this was operable. My sister (pessimist) said it is in a bad location and it is spreading cancer through out his whole body because it is right next to a major blood vessel, and his Onc didn't want to tell us because he doesn't have much time. (not her exact words)

Question-- What qualifies a person for HAI pump? Cryosurgery? RFA? or any other treatments.

Question-- Would they do the same chemo, (12 rounds 5FU, and oxi) he does have neuropathy in hands and feet. Is there a chemo that won't make that worse?
Does he develop immunity to the chemo they used the first time? Can we request a certain chemo (oral)? He also took his port out 6 months ago

Any advice appreciated. Thank you and God Bless, Yolanda

[IcyBlueEye]

I was also found to have a met. to my liver which was measuring 13 mm, ( 1.3 cm) and then 10 mm shortly before my 2nd set of surgeries. My 1st surgery was to my sigmoid colon, which was 90 % blocked, so no chemo or radiation, I went straight from a MRI n CT scan to being admitted with surgery the next day at 8am. No time to get nervous. My liver met was in the Caudate lobe, which could be where your dads is located. It is a bit more risky to preform surgery but it can be done. They combined my liver surgery with lung surgery ( VATS) and all went extremely well and they got clear margins on all 3 tumors, a second very tiny tumor had shown up in my liver which as my surgeon said, took mere minutes to remove. I developed a blood clot in my portal vein after doing 6 rounds of chemo ( 5 FU, Avastin and Irinotecan. which put me on daily injections of a blood thinner ( Lovenox). Which resulted in the rare side effect of hair loss, I didn't lose any during chemo n bam within 2 weeks of these shots out came my long ( past shoulders) dark hair. Surgery can be done. I was in the hospital from Wed( surgery) to Tuesday am, I could have gone home Monday, but the weekend nurse was leary to wean me off the iv pain meds, since I had a double surgery. I am still on daily blood thinner shots for the blood clot in my portal vein. So surgery can be done

[gfpiv]

Hi floss,

Sorry to hear of the recurrence, but at least it sounds like they caught it early. It's possible that another onc might consider him for RFA or sir spheres, but I'd imagine most would prefer to see how he did on second-line treatment first, especially if the liver tumor is in a tough place. As for HAI, they prefer to do it when the metastatic disease is liver-limited (which appears to be the case here)...so something I would definitely look into, preferably asap.

If dad already did 12 txs of FOLFOX, they likely won't give him Oxaliplatin again due to risk of additional, possibly permanent neuropathy. Chances are they'll want to try FOLFIRI (Irinotecan and 5-FU), possibly with Avastin. This can be an effective second-line treatment for many, so there is hope there. Of course it comes with its own potential side effects (e.g. diarrhea, nausea, fatigue, hair loss). Odds are he would be more comfortable getting his port put back in for this treatment, unless for some unlikely reason his onc only expects to need it for a couple months. There is an oral version of 5-FU (i.e. Xeloda), but it costs more and not all insurance will pay for it - plus Irinotecan and Avastin need to be done via IV anyway.

Anyway, best wishes to you both.

[SkiFletch]

I'm merely speculating here, but it would seem more likely that the onc looked at it, said to himself, 'that's in a tricky spot, but a liver surgeon should be the one making the final decision.''

The proximity to the blood vessels have no bearing on further progression. It's not THAT close and that's not how cancer progression works. Because the surgeon would need to take a large area around the tumor, that would include the nearby blood vessels, thus making the resection a bad idea.

Not sure about qualification for those other procedures. I do know RFA can be similarly tricky to use when blood vessel proximity is an issue, but like your oncologist, I can't say for sure .

As to chemo, typically irinotecan based regimes are 2nd line therapy in the US. you'll need to talk with your dads onc regarding the next choice though. Even though irinotecan based regimes are typical, perhaps something else is warranted here. Only a real dr can answer that

[mymom]

I am very sorry to hear this. I am not sure where you are located but I would highly recommend you send your records to Sloane, Dr. Kemeny, for the HAI pump. It sounds as if your father may qualify. My mom is doing very well with it. She had her second liver resection and the HAI pump put in a year ago. A year before that she had her first liver resection in Manhattan but at another hospital. Always get a second, third and fourth opinion. Good luck.

[floss32]

Thank you for your replies. My Dad has his appointment with his Onc tomorrow at 9am. We live in WI in between Milwaukee and Chicago 1 hour to reach either city. We will ask about the HAI pump. The University of WI-Madison 2 hours away does place HAI pumps. I think I read that on here. I just hate the thought of him suffering. Does the 2nd line of chemo irinotecan cause his hair to fall out? We will see what his Dr. recommends tomorrow. I told my Dad it was best to get a port in again, first. Do you guys agree? We should of never taken it out, but I think I just wanted him to fell normal again-but I guess that will never probably happen. This is our new normal. I'm glad to hear that cancer does not spread via it being close to major blood vessels- Thanks again and God Bless!

[floss32]

Chip,
I just re-read all posts and answered my questions. Sorry, mind is racing. I need to stop and breath and take it one step at a time!! Hard to do some days.
Thank you

[floss32]

Hi,
My father will have a new port placed on Tuesday and start chemo on Wednesday. His Onc decided to stick with Folfox for two cycles and than see if that is still effective. He said the neuropathy was not bad enough to omit the Oxi. We will go with his suggestion. Take care and Gold bless.

[Val*pal]

Flos,
I can speak to the second-line chemotherapy, Folfiri with Avastin. My husband just completed 9 of 12 rounds. He developed neuropathy with the first-line, Folfox, but has not had significant neuropathy with Folfiri. In some ways he has found the Folfiri + Avastin more difficult in that he has more fatigue, especially now as he completes the first two-thirds of treatment. However, he has not developed the other warned-against side-effects associated with Folfiri-Avastin.

Yesterday the visiting nurse unplugged my husband at 3 p.m. from the take-home pump, and we went to dinner and to a casino one hour away that evening. Granted, he slept on the trip back home, but he thoroughly enjoyed his evening out. He ate a full dinner and played slots for 3 hours straight. The fatigue is a factor, but he finds that if he works through it, it often lessens.

Also, a recent CT-scan revealed that Folfiri has stabilized my husband's peritoneal mets, which is a very good outcome for a difficult cancer.

I wish you and your dad the best of luck as you find the best treatment options for him.
Val

[Bev G]

My single, very large liver met was in my posterior caudate lobe, just mms from huge vessels. My unbelievably wonderful liver (transplant) surgeon didn't even flinch about doing the surgery. These guys deal with all the vessel stuff all the time. He removed the entire caudate lobe (it's a fairly small one, squished between the much bigger right and left lobes) I fully believe the cancer was contained because it WAS in that lobe. I had all negative nodes, and no cancer has returned to my liver---it's now been 3 years 2 months. I never even knew how lucky I was that someone found me and was willing to operate. Now I do! Don't be too sure surgery cannot happen--just keep looking, keep asking.

Best wishes to your dad and you!

[floss32]

Hello again,
My dad got through his folfox treatment last week. #13 all together, but his first since his recurrence. He had a Nuelesta shot at disconnect Friday and had lower back pain Monday. His mouth is sore and slept all of friday and Saturday. Back at work but does have fatigue. We went to see his Onc today and had bloodwork drawn. Everything looked ok and he will have his next folfox on July 3. My question is ... What should I be asking the Dr.? I go with my Dad for support but feel I should be asking more questions. My dad says nothing and does not complain. My other fear is that maybe I don't want the answers. Should I have asked if the first round made any difference? Is it too soon to know anything? Is it true that a recurrence is worse the second time around? I don't even know how many rounds they plan on doing. I also don't want to ask in front of my dad because I don't want to have him hear if its bad news. Just so sad. Any advice welcome. Thanks and God bless....

[floss32]

Hello everyone, update on my dad. My dad has had 4 more rounds of Folfox. On his 3rd round he had a terrible allergic reaction and thought he was going to die. He came home with a 5 wishes booklet for end of life arrangements. They only gave him 1/3 of the oxi and sent him home with the pump of 5fu. Met with the onc and he said that he wanted to find out if Folfox was effective before doing the desensitization protocol. Had a pet scan and it showed that the tumor had shrunk. His CEA numbers were down to 8.5 at last check from 13 since recurrence. He just finished his 4 round that took over 6 hrs. Since than he has had severe pain upper right area around his rib cage. He mentioned it to the Dr. And he told him to take Tylenol. My mom said his pain was so strong over the weekend,he broke out in a cold sweat. We see the dr. again tomorrow
Is this normal he said the pain is 7/10 scale. Do most people with this cancer take pain medication daily? Is his liver swollen and causing this horrible pain? If the tumor is shrinking why is the pain getting worse? Just wondering what type of pain meds cc patients are on because I know long term pain med use has its own set of side effects.
Thanks for any advice

[skypup]

Hi floss,
I wish I had some good answers to your good questions, but I fear the route cancer takes in each of us varies a great deal, so I don't know how to go about generalizing. Perhaps some of the other members will add from their experience. I do know that controlling pain is important and worrying about becoming addicted to or dependent on pain meds is not an issue for advanced cancer patients. I just read a study recently that showed cancer patients don't become addicted, I guess because we are using the meds for their legitimate purpose. Now side effects like constipation are real and need to be dealt with, but these can be addressed.
Just keep supporting your dad -- that kind of help and love is priceless!

[so-scared]

Floss,

I am sending you a PM. I live in Wisconsin too and have some information that you may be interested in. I am sorry that your dad is going through this! He is lucky to have such a supportive daughter!