Surgery/Chemo conundrum

ThunderJeff

Hi All,

First and foremost, my thoughts and prayers are with all of you and your families. Thank you for creating such a wonderful, supportive community to share information, stories, and hope.

My mom (late fifties) recently had a recurrence (original dx in 2014 was st II DCIS HR+Her2-; lumpectomy with clean margins, then treatment with red devil/taxane over 16 weeks, infusion every other week, followed by radiation and hormone therapy). Clean scans thereafter.

Now ... mets to bone (small spots on rib, skull, spine, pelvis), nodes, single met on liver (either 1.8 cm or mm, need to confirm), and lungs; Er-PR+Her2- (20% cells with PR presentation). My understanding is liver has largest lesion. Her blood work looks great, as does her organ function. She was nearing her annual scan, but dx was a result of visiting ortho doc for neck/arm pain, where MRI revealed she has three fractured vertebra (and spots that were later confirmed to be mets). Fractures are almost certainly the result of physical activity someone with her bone density should have avoided, but it is what it is.

After meeting with neurosurgeon and oncology team, an impasse was reached: initiate chemo first or repair the neck first. Neck repair is roughly an 8 hour surgery and will involve a fusion. Surgery would have delayed chemo at least 1m. The team felt chemo was the best option, with neck repair down the road if any neurological issues arose. Regimen is Xeloda 14 on 7 off with Keytruda infusion every three weeks, infusion administered concurrently with day one of the Xeloda regimen. Scans in a couple months to see how things are going. Here's the rub: the neck/arm pain has gotten significantly worse this past month, to the point where she's effectively bedridden. SE's from chemo don't seem too bad, but she's taking maximum daily allotment of painkillers to keep stabbing neck/arm pain at bay. This is an active woman who is in (otherwise) excellent shape. She meets with a pain specialist in the near future to see if there are creative solutions/alternatives out there, because she's adamant about treating the cancer and staying with the prescribed regimen.

A couple questions for the group:

1. Anyone else taking Keytruda for MBC (with or without an additional therapy such as cape)? If so, how has it gone?

2. Any thoughts on the promise of her chemo regimen (personally, I believe immuno-oncology is the key to one day throwing around the word "cure" as it relates to all cancers, but it's a relatively new thing)?

3. Anyone else reach a similar impasse, where it was surgery or chemo, and you had to choose?

4. Any thoughts on information she and my father should be trying to get from this pain specialist?

Thank you!

Jeff

dlb823

Hi, Jeff. First, I'm so sorry to learn about your Mother's recurrence. I have no experience re. the specific questions you've asked, but when faced with choices, I am a huge fan of second opinions -- ideally at an NCI-designated cancer center. If your Mom isn't already being treated at one, here's a list. If she is, another opinion can't hurt, especially since you have so many questions, and sometimes just hearing your options and possible benefits and drawbacks described by a different surgeon and/or oncologist can help with the decision-making process.

https://www.cancer.gov/research/nci-role/cancer-ce...

I can tell you that I personally had surgery for pathological fractures in my femur & pelvis about 3 mos. into my mets dx. At the time, I was on an aromatese inhibitor rather than chemo, but I learned from that experience that pain can go from bad to excruciating very suddenly if fractures are not taken care of and worsen, as my undx'd ones did. I also believe in retrospect that having the surgery gave me an initial boost towards healing because my ortho surgeon later told me he removed everything "funky" looking. In other words, I think getting in there, he was not only able to repair the damage, but also physically removed diseased tissue, which was a big help. But unlike your Mom's recommended meds, mine did not have to be stopped or delayed for surgery.

Hugs to you and your Mom, and please keep us posted on what she decides to do. She's fortunate to have you reaching out and advocating for her. Deanna

pajim

I too needed a fusion. Lower back. There was no question of having it repaired first. One thing that the fusion will do is they can remove all the mets in the neck. So she'll automatically have a lower tumor burden.

This is going to sound a little brutal but here's the question to put to her. Does she want a longer life in pain or the risk of a shorter life but no pain? Or does she have a point at which she's going to tell the doctors she wants the fusion?

[Although I gather they're just suggesting waiting one more month?] What is their plan for repairing? Wait until she has permanent nerve damage? To me that's s freakin bad idea. UNLESS they feel the cancer is fast-growing. Which the scan will tell you.

Now that's a confused-sounding response, but what you have here (as you realize) is competing risks. Your mother has made a decision. It's not necessarily the one I would make, but it's up to her.

ThunderJeff

dlb, thanks for the Xeloda PM and the NCI info. We have the NCI box checked and the neurosurgery and onc teams have worked seamlessly together. Time from dx to treatment was less than two weeks. On the whole, I've been impressed by their responsiveness and teamwork.

pajim, thanks for the reply. The first question I asked the oncology team was "okay, so she gets treatment ... if it's efficacious she continues to receive the treatment indefinitely, and there isn't a break in that regimen where she could "sneak in" a complicated fusion surgery. So when does it happen?" The response we received was that her neurological/neck range of motion exams showed enough strength and flexibility (and no signs of neuro issues) such that they were comfortable initiating treatment first; the oncologist and neurosurgeon worked closely together to arrive at the final call. Things have worsened significantly since then, so now we're at a different impasse a month later.

The cancer appears to be a fast grower (from NEAD 11/2016 to mets in bone, liver, lung in less than a year seems to point in that direction). Further complicating matters is that there was one slot left in the trial she was eligible for, which as I've noted is an immuno-onc combo with arguably the hottest checkpoint inhibitor on the market. She gets the surgery first and presumably the slot gets filled, and she's on standard-of-care treatments instead (which can certainly get you to NEAD, but maybe not with the lasting effect of a checkpoint inhibitor if it works).

She sees pain specialist in the group tomorrow so we'll see where that goes.