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09-16-2016, 11:48 AM
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#1
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Palliative vs. Curative Intent
I'm thinking a lot about this topic because of my own story. I am Stage IV and was that way at diagnosis. After over three years of metastases in my lower lungs slowly getting larger and causing more trouble for me, the cancer in my right lung finally caused a trip to the ER. It was blocking the airway, and I ended up with pneumonia (in June). I've been on three rounds of antibiotics since then. I have been asking or wondering about local treatment for my lung mets for at least 2 years. Last October a scan showed no detectable cancer in my body except in the lungs, and that was getting better. Last January there was still no detectable cancer anywhere but my lungs, but they were lighting up more.
Fast forward to this August. My medical oncologist referred me to radiation oncology, and I'm halfway through a 12-round course of radiation to my right lung, to correct the cause of the pneumonia and hopefully eradicate the cancer. The radiation folks said if it goes well in my right lung they can do the same thing in the left lung later.
It occurred to me that if radiotherapy is a good idea now, it would have been an even better idea 9 months ago, when I was younger and not battling a chronic bacterial infection. I saw my NP today and asked her about that, trying not to sound critical, but just wanting to know. She asked the onc and came back to report that the reason for waiting is "We can't radiate everything."
I don't really consider that an answer. At that time chemo (Abraxane, Herceptin, & Perjeta) had been effective for everything but the lung tumors. I think that would have been a perfect time to go to a targeted treatment. Of course you "can't radiate everything." But my only "thing" at the time was the cancer in my lower lung lobes.
The folks in radiation oncology explained that for various reasons lung tumors are hard to control with chemo. They know how to handle them with radiation. They told me there are studies showing good results for patients like me who are on the same treatment plan as I. Other cancer centers have gotten measurable benefits from using local treatment on metastases of all kinds.
I think it comes down to how one defines "palliative intent." I seem to have a more robust, proactive view of it than my oncologist does. I don't think I should have had to get sick before she recommended a new treatment modality for my chemo-resistant lung mets.
I think "palliative" means "do all you can, within reason, and consistent with maintaining quality of life, to control the disease and keep the patient as healthy and functional as possible." I don't know how she sees it. I just see a very large amount of territory between "we can't radiate everything" and what happened to me.
I can't go someplace else because here in the Wild West my cancer center is basically the only game in a gigantic geographical area. When I was in Boston I had tons of choices. Here I actually tried to get a second opinion, and the people at the other doctor's office were so inept and unhelpful about getting together my medical records in advance of the appointment that I gave up and canceled it.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
Last edited by Mtngrl; 09-16-2016 at 06:15 PM..
Reason: To align my faulty recollection of dates with the more reliable ones in my signature
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09-16-2016, 03:21 PM
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#2
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Senior Member
Join Date: Mar 2011
Posts: 70
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Re: Palliative vs. Curative Intent
Thanks for sharing this information. You raised a lot of good questions. Why wasn't radiotherapy recommended sooner? Seriously, " we can't radiate everything"??? I pray you get good results. We all must be vigilant in advocating for ourselves.
__________________
12/2006 right lumpectomy - HER2-Stage 1
A/C x 4
Radiation
Herceptin - one year
6/2010 - Stage 4 - lung and skin mets
Lung resection
TCH x 6
12/2010 - right mastectomy
On Herceptin
Scans every six months
11/2013 - stable continue to watch spot on lung
Continue on Herceptin
6/2016 - 6 years Stage 4 - stable - continue Herceptin
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09-16-2016, 03:47 PM
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#3
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Senior Member
Join Date: May 2013
Posts: 570
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Re: Palliative vs. Curative Intent
I'm sorry, Amy. It really does sound as though you were mismanaged. I was offered radiation for a painful bone met. The intent wasn't curative, it was to offer relief. You should have been offered radiation for relief of local disease, to make you feel better, not cure you. That's my understanding of palliative care.
Living in the sticks, I guess you will have to be ultra diligent in advocating for yourself. I'm sorry that is the case. Is there no one else you can see?
__________________
Tracy Arcari
___________________________________________
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%) HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE
/ /
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09-16-2016, 06:16 PM
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#4
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Palliative vs. Curative Intent
It's not exactly the sticks. It's Denver, Colorado. But our population density is much less. And I'm lucky. I live about 15 minutes away from the hospital.
When I raised the idea of local treatment to the lungs in Boston, the NP I was talking to said, "They don't do that with Stage IV." I knew then that was flat-out wrong. I had been reading about studies of the efficacy of local treatment at places like M.D. Anderson. So it's not just because I'm now more geographically isolated.
Palliation isn't just about pain relief. It's about trying to optimize available resources. But not everyone sees it that way.
I don't know if it came from the medical onc, or it's just standard practice, but when I first met with the radiation onc they were thinking they'd do a short course of radiation with a low dose just to make me more comfortable for a few months. But after talking to me awhile the resident said, "You look really good. You don't look like you have cancer. I have to clear it with my attending, but I think we should try to eradicate the tumor." He went on to say there was a bit more risk of side effects, but he thought I'm a good candidate. His boss agreed.
Chemo was making me pretty darn sick when I quit in December. I felt awful for at least 10 out of every 21 days. After the March scan my medical onc wanted to put me on Gemzar, with a three week on, one week off dosing schedule. I said we should save that for later, and opted for just Perjeta and Herceptin for awhile. I wanted to get my strength back and let my immune system rebound.
I didn't think about local treatment in my lungs at that time because it wasn't raised as a possibility. I'm glad I was eventually sent over there, and I'm optimistic about the outcome.
Here's the point: What could be more "palliative" than eradicating the cancer and avoiding consequences like pneumonia by using a safe, effective, standard treatment modality? There's overlap between "curative" care and "palliative" care. Taking reasonable steps to put me into NED territory would be pretty frickin' palliative, in my view. And I'm still hoping for that.
Amy
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09-17-2016, 10:58 AM
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#5
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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Re: Palliative vs. Curative Intent
Hi Amy,
Glad to hear you are finally getting some localized treatment for your lung mets. Unfortunately many oncs are behind when it comes to treating stage IV patients with oligometastatic disease.
you and I definitely fit in that category, and it is up to us to push for treatment, as it only makes sense.
https://moffitt.org/media/4879/21.pdf
When I had my last recurrence to the peri rectal area of my abdomen, I immediately asked about getting SBRT to the area. My onc presented my case to the radiology docs, and it was their opinion that my tumor was too close to the bowel to receive radiation, because of possible complications. Fortunately the Kadcyla has taken care of the tumor and nearby lymph nodes that were lit up.
My next scan is in Oct. and you can bet if any new mets are present, I will be touting the "whack a mole" strategy that our dear Brenda used to call it!
Kim
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.
5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.
9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .
11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!
7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!
June -Dec 2004 UW Vaccine Trial.
7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.
Brain MRI @3 months NED!
2006-2011 brain/body still NED
8/04/11 Taking Herceptin break, will monitor with tumor markers.
6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.
7/23/12 CA15-3 now 49.3
Her2 Serum 26.8
8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49
11/7/12 Add weekly Taxotere for 4 cycles
2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.
November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!
Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara
Jan 2016 Begin Kadcyla
March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla
November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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09-17-2016, 11:06 AM
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#6
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Senior Member
Join Date: Mar 2014
Location: UK
Posts: 563
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Re: Palliative vs. Curative Intent
Hi Amy & Kim
Totally with you on this.
Love the "whack a mole"
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09-17-2016, 02:26 PM
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#7
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: Palliative vs. Curative Intent
Amy,
It seems your pneumonia has been a blessing in disguise! I agree with all you have said. If a person wants to fight a multi-front war and has the health and pluck to do so, then why are docs making that arbitrary call without consideration to what a patient wants? It just seems so arrogant. I wonder if when seeing a steady stream of cancer patients oncologists get jaded (and maybe discouraged?) and battle their own demons of despair?
Anyway, Brenda was right. Whack those moles and keep whacking them until YOU have had enough of the game or have won it and clobbered those moles/mets into oblivion. I will pray the radiation whacks the #@%^ out of those moles! Good luck, Amy!
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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09-18-2016, 06:26 AM
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#8
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Palliative vs. Curative Intent
Thanks, everybody. I appreciate the encouragement, and the research paper from Kim. The paper is very informative and helpful. The radiation people haven't told me the type of radiation they're doing, but it's like what the paper describes.
I am, indeed, oligometastatic. I haven't spent much, if any, time at NED, but I've had pretty good control over everything but my lungs. Initial mets were to lungs and liver. Liver mets cleared up on first round of treatment and have stayed gone. One bone met surfaced while I was getting only Herceptin and Arimidex. I'm no longer ER positive, so hormone therapies are out for me.
My med onc is young and seems pretty positive and optimistic, but I had the pneumonia in Philadelphia, so she didn't have direct data. The hospital in Philly sent my records to her. But the first time I saw her after I got back she was questioning whether I had "really" had an infection. Did I have a fever? (Yes) Did I feel sick? (Yes, horrible) Did I get better with the antibiotics? (Yes indeed) She also chose that session to ask about end-of-life planning and recommend I meet with the palliative care team.
That had me a bit freaked out. And the feeling isn't entirely gone. The NP I saw two days ago again asked questions directed at the "Is it really an infection or is the cancer getting worse?" question. The Philly hospital did a sputum sample. Seems like that would confirm the infection. Plus I've had two flare-ups since June and have responded well enough to antibiotics to keep me out of the hospital.
My medical onc didn't refer me to radiation oncology until August 5. I was leaving the next day for 11 days, so I didn't have my first consultation with them until August 22. I started radiation treatment September 6.
I have always realized that I am the one who cares the most about my own health, and I am the one who knows my body best. I don't mind being in charge, and I often take charge. My NP seems to be more on board with a "long view" management plan for me than her boss does, and I see the NP every three weeks (though she's about to go on maternity leave, so I'll have a new NP for a few months.)
Onward. . . .
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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09-24-2016, 10:32 PM
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#9
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Re: Palliative vs. Curative Intent
Amy,
I'm with you - they should have offered a whack a mole approach BEFORE you had the pneumonia. I think that my onc has the bar too low (at least that was my daughter's observation a few check ups ago) and I agree.
I think the onc's compare us to other St4 patients, and think we are doing well. BUT--we want to be doing EXTREMELY well - NED, or NEARLY NED!!
I've been having trouble with bruising, and went in Monday for a blood draw. My NP was supposed to speak with my onc about my excessive bruising. Long story short, I've had to send two emails, the last one on Friday saying, "did you overlook this"? to my onc, who responded by asking for a list of all my meds including supplements saying they'll do a blood check next time I came in. LOL. Aren't all my meds on her computer and in my chart??!! I called her out and said my NP was supposed to talk to her last Monday, when they did a blood draw!! And my onc is a leading nationally recognized doc, but she's busy. LOL not but oh my - what the hell are we supposed to do other than keep on self advocating?!
Anyhow, I have a feeling they won't find anything to fix, and this is what happens after many years on vitamin H, Perj, AVASTIN.
I hope that you will respond to the antibiotics. I also have lung mets, slow growing, nothing is NED in me. Cancer is crap. Except for the people you meet along the way...
xo xo xo xo
Flori
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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09-26-2016, 06:13 AM
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#10
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Palliative vs. Curative Intent
Yes, Flori, "except for the people you meet along the way." You're a gem. I've met many others.
Love and light,
Amy
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