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Stage IV With Liver Mets

Posted: Wed Dec 18, 2019 4:48 pm
by camicom
Was diagnosed with Stage 3B after surgery on 7/19. They took a total of 48 nodes and only 1 was affected. Odds were 80% 5 year DFS with or without chemo, so I chose not to. Decided to change my diet to completely Vegan. My pre surgery CEA level was 1.2NL

Had CT scans in August due to abdominal pains around the anastamosis site. All were completely normal.

Met with my oncologist on 11/3 for CEA 2.5NL and joked about having pain on my right side, saying it must be liver metastases right, she said it would be much too early for that to be happening.

Well FF to 11/23, I had what I thought was some blood in the stool, and went to the ER. All blood work was fine, but when he opened the door to tell me the results of the CT I could tell it wasn't good Multiple liver mets.

Had a MRI on 12/3 which confirmed 35 liver mets with the largest being 2cm. Most are very small. My liver function is still completely normal, but my latest CEA test on 12/10 was 4.5NL, so a slow and steady rise.

Had my port placed on 12/11 and a liver biopsy on 12/12 to confirm it was the same type as before(it was).

Right now I am not resectable and just started Folfox with on 12/17 with Avastin on 12/19. I asked my oncologist(had to change, my first moved to Florida) about the HAI pump but he dismissed it as being obsolete. Being on this forum I just dont think thats the case.

I would love to here some success stories and similar situations to mine. It took me a couple of weeks(and Lexapro) to get past the dark feeling sorry for myself place, and now I am ready to fight.

Thanks in advance.

Re: Stage IV With Liver Mets

Posted: Wed Dec 18, 2019 6:01 pm
by stu
Hi ,
Welcome to the forum but very sorry to read your story . My mum had pretty fast growing liver mets too but chemo did a great job of shrinking them . The speed of growth worked in her favour due to the rate of cell division!! Not even going to try and work that bit out .

I am not in America but have watched people using the pump and reporting great results . I would most certainly rule in an investigation of the process and consult with the relevant doctors before you make your decision.

Just a word of encouragement. My mum has passed the ten year mark since her stage 4 diagnosis. I am a big believer in seeking out windows of opportunity.

Take care ,
Stu

Re: Stage IV With Liver Mets

Posted: Wed Dec 18, 2019 9:21 pm
by Rock_Robster
Hi camicom,

Very sorry to hear about the latest news. I’m also not in the States so I’ll leave others to comment on the specifics of HAI, however my understanding is that your case (numerous, small liver mets) is the ideal scenario for this therapy. Chemo can totally remove very small metastases, but only if they are small enough and it can be delivered in high enough doses, which HAI excels at. Resection of this type of presentation without a good prior response to chemo can be tricky as there may not be many/any unaffected segments.

I’m not sure where you’re based, but a consult at a higher-volume HAI centre (with a major hepatobiliary surgery practice) like MSKCC or City of Hope could be worthwhile now.

Also you mention you are BRAF wild in your signature; I presume they did MSS/MSI and KRAS/NRAS testing as well? This could also become very important now.

Good luck,
Rob

Re: Stage IV With Liver Mets

Posted: Thu Dec 19, 2019 10:22 am
by boxhill
Echoing what Rock_Robster said. Consult with a HAI center may be in order. Also, you need to find out whether you are MSS/MSI, KRAS status, etc. This has direct bearing on you course of treatment.

Add the genetic info to your sig when you can. Best of luck going forward.

Re: Stage IV With Liver Mets

Posted: Thu Dec 19, 2019 11:05 am
by camicom
Thank you all for your replies. I am MSI stable and am waiting for the latest biopsy to tell me if I'm still BRAF and KRAS wild(i think I have that right, if you are wild that mean you don't have it). I am on the west coast and will do some further research on locations that offer HAI.

Re: Stage IV With Liver Mets

Posted: Thu Dec 19, 2019 11:26 am
by FightCRC
Sorry you have to be here. But it's good that you are. Because you may not have heard of HAI otherwise.

On the West Coast, you have basically two options: City of Hope in LA and OHSU in Portland.

OHSU's HAI program is headed by Dr. Skye Mayo, who trained at MSKCC (THE center for HAI).

City of Hope, though, has Dr. Yuman Fong. He is the Chair of Dept. of Surgery at City of Hope. Prior to this, he was at MSKCC for 20 years where he was the top liver surgeon. He helped develop HAI pump therapy with Dr. Nancy Kemeny (you will see this name a lot), and he's implanted more pumps than anyone. Too many other credentials/accolades to list. Suffice to say, he's the best of the best for HAI pump implant and liver resection. Highest recommendation to see him.

If you can also consult with Dr. Kemeny at MSKCC, highly recommend that, as well. Because as good as Dr. Fong is with surgery, there's no one better at pump chemo management than Dr. Kemeny. If you need HAI to get resectable, you may need her.

Feel free to PM if you have any questions. Best of luck to you.

Re: Stage IV With Liver Mets

Posted: Thu Dec 19, 2019 12:28 pm
by ginabeewell
camicom wrote:Right now I am not resectable and just started Folfox with on 12/17 with Avastin on 12/19. I asked my oncologist(had to change, my first moved to Florida) about the HAI pump but he dismissed it as being obsolete. Being on this forum I just dont think thats the case.


When I was first diagnosed with Stage 4 and a liver covered in mets, I had three oncologists all tell me they would put me on chemo and try to keep me alive for a year or two, then hope medicine offered something better in the future. None of them mentioned or wanted to discuss the HAI pump or even the chance of surgery. I know now looking back that they thought I had a snowball's chance in hell of ever getting to operable.

I found a fourth oncologist who was willing to talk to me about what it would take to get a cure. She was also open to me speaking with Dr Kemeny at MSK about the HAI pump, and was honest about the fact that she felt that Dr K "had a singular skill set" that was unlike anything she or anyone else at Northwestern could offer. They, like many centers, do offer the HAI pump, but I do think doctors are human - they have a tendency to recommend what they know. Your doctor wouldn't be the first to downplay what the pump can do. Then again, I find myself sometimes wondering if the results of the HAI pump at MSK are driven by the pump or Dr Kemeny. It's probably a combination of both!

At any rate, i responded well to the initial rounds of chemo. The HAI pump actually didn't shrink my tumors further, but the initial decrease was enough that an MSK surgeon was willing to do two resections on me to remove the tumors. The pathology was 99% dead, so my sense is that the pump did help, and my hope is that it will protect me from relapse.

I am still recovering from my last surgery, and once that happens I will start mop up chemo. I feel a long way away from the "year or two" prognosis I got a little over a year ago. Just hoping it stays that way!

Re: Stage IV With Liver Mets

Posted: Thu Dec 19, 2019 5:15 pm
by juliej
I agree with FightCRC: Dr. Skye Mayo at OHSU in Portland, Oregon, Dr. Yuman Fong at City of Hope in Duarte, California, and (THE world-wide expert on HAI treatment), Dr. Nancy Kemeny at MSKCC in New York City.

There are several of us here with HAI pumps, so feel free to ask questions. I, personally, would not be alive now if not for my HAI pump and the care of Dr. Kemeny at MSK, so I can guarantee you HAI pump technology is not "obsolete." It's good you are researching your options, because, to put it bluntly, we Stage IVs are often told there are no options. which is total BS. Be strong, be assertive. It's your life you're fighting for.

Juliej

Re: Stage IV With Liver Mets

Posted: Thu Dec 19, 2019 5:48 pm
by MetastaticEquilibria
I can sympathize with the shock of going from Stage 3 to Stage 4 so quickly. I went from 2 to 4 in 5 months, which surprised my first doctor, who did not expect that to happen so fast. Then I transferred to a major cancer center, where such things don’t surprise them. They have a lot more experience. So try to go to a cancer center rather than a general hospital if at all possible.

As for faster-growing cancers also dying faster, I think it could make sense in that treatments that try to damage the cancer’s ability to replicate (chemo, radiation, e.g.) have their effects felt, naturally, when the cells actually try to replicate. So the sooner the cells try to replicate after treatment, the sooner they fail to do so, and die. (Any medical experts feel free to correct me.)

As for HAI being obsolete, while it is not a new technique, it still seems to be quite effective for some people. No reason to throw out a tool from the toolbox if it still works, just because it is not brand new. (I have just been started on a version of HAI via weekly infusions, rather than an implanted pump. Fingers crossed.)

Re: Stage IV With Liver Mets

Posted: Fri Dec 20, 2019 3:22 pm
by camicom
Thank you all so much for you replies. I contacted Dr Mayo's office and talked to his knowledgeable scheduler about my situation. She said they usually wait to see how people respond to their first round or two of chemo before doing the pump, for response and for insurance purposes. Its makes complete sense. I will keep positive than I have a great initial response and then adjust to whatever is next.

Thanks again everyone. It means so much that you would take the time to answer me and give me very helpful information.

Merry Christmas to all