5 more liver lesions, multiple mets in lungs

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pyh220
Posts: 19
Joined: Thu Sep 11, 2014 2:31 pm

5 more liver lesions, multiple mets in lungs

Postby pyh220 » Mon Oct 26, 2015 9:28 am

Hi all, in what was supposed to be a ONE liver lesion ablation on Friday turned into no ablation, and just more bad news. Upon doing the CT Scan before the ablation procedure, they found that there were 5 more liver lesions, multiple mets to the lungs, an obstruction to the kidney, and a blood clot in the left pelvic region. This was such an overwhelming day and I just can't believe the cancer has progressed so quickly in 3 months (CT Scan in Aug 2015 showed one liver lesion).

Our oncologist, is highly recommending chemotherapy treatment however mom doesn't want to do it. How do we approach mom as a family when she feels hopeless and that chemotherapy is just too strong for her? (she did not respond well to her adjuvent chemotherapy as her blood levels dropped and side effects were strong. onc had to reduce treatment multiple times). It is her choice of course, but I feel like she is sort of giving up. I don't know what to do or what to say. thanks.
57 yr old mom Stage 3c
19/32 lymph nodes
rectal cancer 3.1cm dx 7/1/2014
colon resect and temp bag 8/27/2014
Reversal takedown 5/6/2015
6 mm spot on liver 8/28/2015
5 more spots on liver, multiple mets on lungs and colon resection region 10/23/15

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: 5 more liver lesions, multiple mets in lungs

Postby midlifemom » Mon Oct 26, 2015 9:38 am

So sorry to hear this.
Butt, it has to be mom's choice.
Perhaps a good sit-down with the oncologist regarding side effect management would help.
Additionally, mom might be put on a different chemo this time, one which doesn't impact her so much. She can also start, then decide to stop if it's too hard.

As a patient, I would suggest staying away from the phrase "giving-up". I don't have the words to explain, butt if someone said that to me, I would feel angry and shamed. Caregivers are wonderful. Butt they don't know what a patient goes through - emotionally and physically. I hope all goes well - however it goes.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

jalusa
Posts: 221
Joined: Thu Apr 02, 2015 9:26 am

Re: 5 more liver lesions, multiple mets in lungs

Postby jalusa » Mon Oct 26, 2015 9:56 am

Agree with MLM on avoiding using the words "giving up". As with her, I can't put it into words, but unless you have been in her shoes...
Hoping to get to resection with HAI pump.
Failed PVE - Searching for options
Chemo for life

plastikos
Posts: 343
Joined: Wed Jan 14, 2015 6:09 am

Re: 5 more liver lesions, multiple mets in lungs

Postby plastikos » Mon Oct 26, 2015 10:04 am

Sorry to hear this. I think in the end your mom has to decide for herself as it is her right. Maybe there are less toxic chemo regimens she can try. Or other regimens aside from chemo therapy. Suggest you talk to your onc. Hope it works out.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED
2019 NED

dudette
Posts: 106
Joined: Sat Oct 17, 2015 10:04 am

Re: 5 more liver lesions, multiple mets in lungs

Postby dudette » Mon Oct 26, 2015 12:11 pm

It sucks to get worse news than you expected. Especially when the turnaround time has been so short.

I can relate to your mum with not wanting to do chemo. I only had four rounds but the last one floored me completely - it sucked the life and the will to live out of me. I would do another surgery and try whatever else might be available but will stay away from systemic chemotherapy.

Speak with the onc and see what other options are available. If he doesn't offer alternatives speak with another specialist. At least your mum can then make an informed decision how she wants to proceed.

Fingers crossed for your mum and keep us posted.
Temi
Dx 03/2015 @ age 41 - CC stage IV - pT3 N2b (14/29) cM1 (hep) L1 V1 Pn1 R1
Wild K-RAS, N-RAS, BRAF / MSS
unresectable mets liver 60% + lungs
Surgery
04/15 - sigmoid resect.
07/16 - hysterectomy (ovaries)
Chemo
05-06/15 - 4 x Folfirinox
12/15 - 02/16 4 x Xeliri + Avastin
03-05/16 9 x Xeloda
09-12/16 Folfiri + Cetuximab
01/2017 - metronomic chemo + methadone
July 20, 2107 - Temi has passed away.

DarknessEmbraced
Posts: 3577
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 5 more liver lesions, multiple mets in lungs

Postby DarknessEmbraced » Mon Oct 26, 2015 1:22 pm

Sorry to hear about your Mom.*hugs* Maybe there are non chemo options that she could try. I would sit down with your Mom and her oncologist to discuss those options. Please keep us update.*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Nik Colon

Re: 5 more liver lesions, multiple mets in lungs

Postby Nik Colon » Mon Oct 26, 2015 10:24 pm

So sorry to hear. Can I ask what chemo's she has done prior. Which side effects were the worst. Was or is she on any pain meds or others? Just wondering as to hopefully be able to give advice (if I can)
Last edited by Nik Colon on Tue Oct 27, 2015 12:15 am, edited 1 time in total.

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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: 5 more liver lesions, multiple mets in lungs

Postby Bev G » Tue Oct 27, 2015 12:04 am

I'm really sorry to hear this. Perhaps after your mom has had a little time to process the disappointment about the ablation not going forward, she will re-consider chemo with active management of her side effects. Hoping for the best for your mom and you.
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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dianetavegia
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Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: 5 more liver lesions, multiple mets in lungs

Postby dianetavegia » Tue Oct 27, 2015 2:19 pm

TRUTH........

Your mom might live another 9 months doing chemo and feeling horrible or she might live another 8 months playing with the grandkids, sharing memories, enjoying her last Christmas. If it were up to me, with all she has going on, buying lousy time is worth less than spending quality time with those we love.

I'd accept anything she chooses. I've read that cancer patients feel obligated to keep torturing themselves because their loved ones want them to try one more thing.

Have you read the article "How Doctors Die" ?

How Doctors Die
By KEN MURRAY, MD

Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds—from 5 percent to 15 percent—albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.

It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.

Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen—that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right).

Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me if you find me like this that you’ll kill me.” They mean it. Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them. I have even seen it as a tattoo.

To administer medical care that makes people suffer is anguishing. Physicians are trained to gather information without revealing any of their own feelings, but in private, among fellow doctors, they’ll vent. “How can anyone do that to their family members?” they’ll ask. I suspect it’s one reason physicians have higher rates of alcohol abuse and depression than professionals in most other fields. I know it’s one reason I stopped participating in hospital care for the last 10 years of my practice.

How has it come to this—that doctors administer so much care that they wouldn’t want for themselves? The simple, or not-so-simple, answer is this: patients, doctors, and the system.

To see how patients play a role, imagine a scenario in which someone has lost consciousness and been admitted to an emergency room. As is so often the case, no one has made a plan for this situation, and shocked and scared family members find themselves caught up in a maze of choices. They’re overwhelmed. When doctors ask if they want “everything” done, they answer yes. Then the nightmare begins. Sometimes, a family really means “do everything,” but often they just mean “do everything that’s reasonable.” The problem is that they may not know what’s reasonable, nor, in their confusion and sorrow, will they ask about it or hear what a physician may be telling them. For their part, doctors told to do “everything” will do it, whether it is reasonable or not.

The above scenario is a common one. Feeding into the problem are unrealistic expectations of what doctors can accomplish. Many people think of CPR as a reliable lifesaver when, in fact, the results are usually poor. I’ve had hundreds of people brought to me in the emergency room after getting CPR. Exactly one, a healthy man who’d had no heart troubles (for those who want specifics, he had a “tension pneumothorax”), walked out of the hospital. If a patient suffers from severe illness, old age, or a terminal disease, the odds of a good outcome from CPR are infinitesimal, while the odds of suffering are overwhelming. Poor knowledge and misguided expectations lead to a lot of bad decisions.

But of course it’s not just patients making these things happen. Doctors play an enabling role, too. The trouble is that even doctors who hate to administer futile care must find a way to address the wishes of patients and families. Imagine, once again, the emergency room with those grieving, possibly hysterical, family members. They do not know the doctor. Establishing trust and confidence under such circumstances is a very delicate thing. People are prepared to think the doctor is acting out of base motives, trying to save time, or money, or effort, especially if the doctor is advising against further treatment.

Some doctors are stronger communicators than others, and some doctors are more adamant, but the pressures they all face are similar. When I faced circumstances involving end-of-life choices, I adopted the approach of laying out only the options that I thought were reasonable (as I would in any situation) as early in the process as possible. When patients or families brought up unreasonable choices, I would discuss the issue in layman’s terms that portrayed the downsides clearly. If patients or families still insisted on treatments I considered pointless or harmful, I would offer to transfer their care to another doctor or hospital.

Should I have been more forceful at times? I know that some of those transfers still haunt me. One of the patients of whom I was most fond was an attorney from a famous political family. She had severe diabetes and terrible circulation, and, at one point, she developed a painful sore on her foot. Knowing the hazards of hospitals, I did everything I could to keep her from resorting to surgery. Still, she sought out outside experts with whom I had no relationship. Not knowing as much about her as I did, they decided to perform bypass surgery on her chronically clogged blood vessels in both legs. This didn’t restore her circulation, and the surgical wounds wouldn’t heal. Her feet became gangrenous, and she endured bilateral leg amputations. Two weeks later, in the famous medical center in which all this had occurred, she died.

It’s easy to find fault with both doctors and patients in such stories, but in many ways all the parties are simply victims of a larger system that encourages excessive treatment. In some unfortunate cases, doctors use the fee-for-service model to do everything they can, no matter how pointless, to make money. More commonly, though, doctors are fearful of litigation and do whatever they’re asked, with little feedback, to avoid getting in trouble.

Even when the right preparations have been made, the system can still swallow people up. One of my patients was a man named Jack, a 78-year-old who had been ill for years and undergone about 15 major surgical procedures. He explained to me that he never, under any circumstances, wanted to be placed on life support machines again. One Saturday, however, Jack suffered a massive stroke and got admitted to the emergency room unconscious, without his wife. Doctors did everything possible to resuscitate him and put him on life support in the ICU. This was Jack’s worst nightmare. When I arrived at the hospital and took over Jack’s care, I spoke to his wife and to hospital staff, bringing in my office notes with his care preferences. Then I turned off the life support machines and sat with him. He died two hours later.

Even with all his wishes documented, Jack hadn’t died as he’d hoped. The system had intervened. One of the nurses, I later found out, even reported my unplugging of Jack to the authorities as a possible homicide. Nothing came of it, of course; Jack’s wishes had been spelled out explicitly, and he’d left the paperwork to prove it. But the prospect of a police investigation is terrifying for any physician. I could far more easily have left Jack on life support against his stated wishes, prolonging his life, and his suffering, a few more weeks. I would even have made a little more money, and Medicare would have ended up with an additional $500,000 bill. It’s no wonder many doctors err on the side of overtreatment.

But doctors still don’t over-treat themselves. They see the consequences of this constantly. Almost anyone can find a way to die in peace at home, and pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days. Amazingly, studies have found that people placed in hospice care often live longer than people with the same disease who are seeking active cures. I was struck to hear on the radio recently that the famous reporter Tom Wicker had “died peacefully at home, surrounded by his family.” Such stories are, thankfully, increasingly common.

Several years ago, my older cousin Torch (born at home by the light of a flashlight—or torch) had a seizure that turned out to be the result of lung cancer that had gone to his brain. I arranged for him to see various specialists, and we learned that with aggressive treatment of his condition, including three to five hospital visits a week for chemotherapy, he would live perhaps four months. Ultimately, Torch decided against any treatment and simply took pills for brain swelling. He moved in with me.

We spent the next eight months doing a bunch of things that he enjoyed, having fun together like we hadn’t had in decades. We went to Disneyland, his first time. We’d hang out at home. Torch was a sports nut, and he was very happy to watch sports and eat my cooking. He even gained a bit of weight, eating his favorite foods rather than hospital foods. He had no serious pain, and he remained high-spirited. One day, he didn’t wake up. He spent the next three days in a coma-like sleep and then died. The cost of his medical care for those eight months, for the one drug he was taking, was about $20.

Torch was no doctor, but he knew he wanted a life of quality, not just quantity. Don’t most of us? If there is a state of the art of end-of-life care, it is this: death with dignity. As for me, my physician has my choices. They were easy to make, as they are for most physicians. There will be no heroics, and I will go gentle into that good night. Like my mentor Charlie. Like my cousin Torch. Like my fellow doctors.


Ken Murray, MD, is Clinical Assistant Professor of Family Medicine at USC. This post was originally published at Zócalo Public Square, a non-profit ideas exchange that blends live events and humanities journalism.
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

11 years since dx and 7 3/4 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

mackswife
Posts: 263
Joined: Fri Aug 17, 2012 7:11 pm
Location: Atlanta, Ga.

Re: 5 more liver lesions, multiple mets in lungs

Postby mackswife » Tue Oct 27, 2015 6:49 pm

I am terribly sorry to hear this news. My husband had two similar experiences in 2014....an aborted liver resection when peritoneal mets were discovered pre-operatively. And, a few months later, an aborted HIPEC liver resection when micromets were discovered all over his liver. He chose to go back on chemo but the disease progressed. Last April, he stopped chemo and we tackled his bucket list. It was amazing to me to see how quickly he rallied without chemo in his system, and we had the most wonderful, memorable trip to visit our children and granddaughter who live in Italy. We made other trips, visited friends, held hands in church and made love. There is a big difference between giving up, and "letting go". More chemo was always an option, but in the end, Mack knew it wouldn't help. He passed away on August 20, just3 days after agreeing to lay down on a hospital bed "for an hour or two." Words cannot express how much I miss him, but I absolutely believe he made the best choice for himself. It's not the right choice for everyone, but we had some really, really special days to share before he left. I hope you will find the courage to listen to what your mom is trying to say, and support whatever decision she makes. My heart goes out to you.

Pattie
Husband IIIC;
7/12 - resection; 12 rounds folfox
CT/PET scans 4/13, 9/13 - NED
CT scan 3/14 - liver/LN mets
5/2/14- failed liver resection - peri. mets.
6 rounds of iri/avastin
8/26/14 - failed liver resect/HIPEC. dse. progression
9/14 - 3/15 - progression on chemo
3/23/15 - treatment stopped; working the bucket list


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