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Old 09-03-2020, 11:51 PM   #1
Senior Member
Join Date: Jan 2016
Posts: 122
Just accepted into clinical trial

It has been 3.5 years since I last visited this support group. I was "fortunate" (or so we thought) and the cancer was gone. Then in July a recurrence....yeah..... hard to handle. I know I should be very very thankful that it is early stage again,but somehow my emotions are having a hard time catching up with that reality. REALLY having a hard time.

After the new diagnosis, I searched and was accepted into a clinical trial for HER2+ disease. There was an earlier trial with women who had more advanced disease and at 2 years they remained cancer free. Two years isn't much follow up in my book. I would like to see longer follow up to know if this approach works. BUT of the 22 women who took part in that trial, two had recurrences. One didn't complete the vaccination series, and the other had a recurrence in the opposite breast. I don't consider either of those true recurrence in the trial.

Now back to the trial I am part of. THIS trial is for very early disease and it entails four vaccinations each two weeks apart, followed by surgery etc. So, this is the first time it has been given BEFORE surgery. In the earlier trial it was after women had completed the standard of care. In this trial it is BEFORE standard of care in earlier stage disease.

Since it hasn't been used before surgery before I want to have another MRI prior to surgery. I really think it is necessary to see if the cancer has grown, stayed the same or possibly shrunk. Does this seem unreasonable?

The entire point of this trial is the immune system. A portion of the immune system (I think the neutrophils?) are bonded to four proteins found in HER2 disease. Then those neutrophils take those proteins and "teach" the immune system to recognize those proteins as bad boys and go after them! In the earlier trial, the immunity was still there after two years and none of the women who completed the vaccination series had a recurrence in that breast. My question is this: am I being unreasonable for wanting to have an MRI prior to surgery? I REALLY want to know (as much as possible) if the cancer has grown, stayed stable or possibly shrunk. My insurance is refusing and the trial doesn't have an MRI written into the protocol and won't cover it.

Just as an FYI, my cancer was ONLY visible by MRI. It didn't show up by mammography or ultrasound.


Thank you,
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Old 09-05-2020, 05:22 PM   #2
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Join Date: Oct 2014
Posts: 293
Re: Just accepted into clinical trial

If it were me, I would want the MRI too. Do you know what it would cost if not covered by insurance? If it's not outrageous I would consider paying out of pocket if insurance won't pay. If it is outside of what you can afford out of pocket, I'd consider a go fund me page. You have nothing to lose.

Sorry you're having to deal with this. I know it has to be scary. Keep us posted on what you end up doing and how things go.
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Old 09-06-2020, 09:01 PM   #3
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Join Date: Jan 2016
Posts: 122
Re: Just accepted into clinical trial

Yes an MRI runs about $5000. A bit on the pricey side! I'm headed back to the PI of the study tomorrow and plan to ask about an MRI, but I will have to get my insurance to approve which is always a struggle! I talked with my husband about it and he agrees an MRI is a good idea. We might try to swing it on our own if our insurance protests

We aren't wealthy people but what do you do?
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Old 09-18-2020, 03:25 AM   #4
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Join Date: Dec 2006
Location: Oregon
Posts: 715
Re: Just accepted into clinical trial

I would want the MRI too. Keeping my fingers crossed that between you and your doctor the insurance company will agree.

Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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Old 09-23-2020, 10:46 PM   #5
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Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: Just accepted into clinical trial

Very interesting trial! Can you post a link so others can see where it is being offered? All the best that this will be a great approach for you.
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 09-30-2020, 05:20 PM   #6
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Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
Re: Just accepted into clinical trial

So happy to hear you got into a clinical trial that will boost your own immunity.
Your thoughts are perfectly reasonable are are worth a conversation with the PI.
Please post a link to the trial when you catch your breath. Let us know if your doctor orders the MRI. I believe if your own ONC orders it, insurance will pay. And please keep us posted.
Kim from CT
2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED

2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.

2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine

2022 On Herceptin and NED continues - WOOT WOOT!
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