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08-19-2014, 12:32 PM
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#1
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Junior Member
Join Date: Aug 2014
Location: Houston, Texas
Posts: 2
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New Here & Need Words of Wisdom
Hello. I've been lurking but decided to join today.
I was diagnosed in June with PR-/ER-/HER2 positive cancer. I had my sentinal nodes excised during my medi-port placement and they were negative. So far, good news, right?
Well I started neoadjuvant chemo in June - Taxotere, Carboplatin, Herceptin and Perjeta, every 3 weeks - and have had three treatments. A week after the third treatment I had an ultrasound and it showed the tumor hadn't changed. I'm heartbroken and so discouraged. I've read stories about how Herceptin and Perjeta are practically miracle drugs for some people. I guess I'm just not one of them. :/
Thoughts? Advice? Words of wisdom?
Thanks in advance!
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08-19-2014, 12:53 PM
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#2
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Senior Member
Join Date: Feb 2014
Location: California
Posts: 439
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Re: New Here & Need Words of Wisdom
Pink Flamingo let me just say this , I did AC and by my 3rd round there was a small decrease but not what they had hoped for. I to was sad and discouraged and worse wondered if I made the right decision by not choosing to use perjeta . Well after all that been said my doctor said that once I start the taxol and herceptin then we should see something more it took a few treatments and we saw small changes but again not what we had hoped for then after all was said , done and complete by that time we could no longer physically feel the mass ( I had tumor and a sheet like mass ) This was great news! When we did the final CT scan it showed that the tumor did not shrink at all ( the sheet was gone) ,again very sad and discouraged it at same time Doc did say maybe it was just necrosis we where seen on ct . So did bmx and got some great news tumor did shrink tremendously from 5cm x6cm to 0.8 mm. What we saw on the Ct was Necrosis ( dead tissue) left behind from the chemo and no positive lymph nodes
officially declared cancer free June 15th 2014. Sometimes of course it still hard for me to believe that I no longer have cancer.
Many ladies on this board have stories of there own where they to where discouraged and yet found all positive.
__________________
]11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
Ki67=23%
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
11/19/21- 8 years today I officially remain NED and in 12 days I will be having a lymphnode transfer to help decrease some mild lymphedema! Still working, living life and soon to see a day I thought never would happen and that’s becoming a grandparent June 22nd.
11/19/2023 - 10 years since diagnosis and I remain NED
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08-19-2014, 06:48 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: New Here & Need Words of Wisdom
Please keep your hopes high!!! There is value in positive thinking!!! You will no doubt hear from many here on this board about their ups and downs, trials, drugs that worked for some and not for others...
We may not have all the answers, but have probably asked most of the questions!!!
You dont mention type of BC that you were diagnosed with. has there been any mention of surgery, radiation?
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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08-19-2014, 07:55 PM
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#4
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Senior Member
Join Date: Dec 2009
Posts: 562
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Re: New Here & Need Words of Wisdom
Herceptin/Perjeta IS a miracle for me, but it wasn't an instant miracle. It took a year.
It took me a full year to hear the word NED, and that was after years of dealing with metastatic cancer growing in my liver. I had even cut out half my liver to rid myself of this disease and it grew back. So I never expected to even hear NED, I was just trying to stay alive a bit longer. I started Perjeta (had been on Herceptin for almost 4 years) last August and cancer was still there up until recently, it just became inactive. My second to last scan, my cancer had not grown but had not shrunk either. (Not growing was all I hoped for).
Then I had one a couple months ago..... and now there is nothing there! Was I ever surprised!
It has only been a couple months for you, way too early to expect miracles. Give it time. If your cancer is not progressing, you are ahead of the game.
This is a marathon, not a sprint. You need to conserve your energy and expect that things will take time. It seems that you are not metastatic, right? Well, if you are still not metastatic, you are a winner! And, you'll be more of a winner as time goes by. Next June you may hear the words you want to hear - remission.
I have many many friends in the cancer world and many of them are now dead. They were the most positive, wonderful people I knew. So don't believe that you must always be positive. Sure, it is good to be hopeful and it is also normal to be discouraged. Life is easier when doing grueling cancer treatments if you can put it in perspective but we all have many moments of despair and that's normal. But in this case, you are too early to be worried it hasn't worked. It still may be your miracle.
*hugs*
__________________
 http://butdoctorihatepink.com
08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative
10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.
5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.
I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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08-20-2014, 08:13 AM
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#5
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Senior Member
Join Date: May 2013
Posts: 570
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Re: New Here & Need Words of Wisdom
I had surgery before I had chemo so I am not able to gauge if the treatment was useful or not because all of my visibly affected tissue was removed. I couldn't stand the thought of it staying there once I knew it was cancerous. You just have to have faith that it will work. Don't be discouraged.
__________________
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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08-20-2014, 08:26 AM
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#6
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: New Here & Need Words of Wisdom
I also had surgery then chemo and radiation. since it's still only in the breast I would think they would do surgery to take it out and then radiation. the chemo may be in hopes of it shrinking before surgery or to avoid any spread.
don't be discouraged.
health and happiness
sarah
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08-20-2014, 12:32 PM
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#7
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Junior Member
Join Date: Aug 2014
Location: Houston, Texas
Posts: 2
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Re: New Here & Need Words of Wisdom
Thank you all for your responses and encouragement!
To answer a few of your questions: My cancer is IDC. The reason I am doing chemo first is because I was able to get Perjeta this way. I was not eligible for it unless I chose chemo before surgery. I am scheduled for surgery in November. I am having a bilateral mastectomy w/ reconstruction because I have long history of breast cancer in my family. I am BRCA negative and in my late 40s.
As far as I know I will not need radiation - I've had 1 enlarged node biopsied early on, as well as my sentinal nodes excised and all of those have been negative. My CT and bone scans have been clear.
Again, thank you for your replies. It helps so much to read other's stories.
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08-21-2014, 03:46 PM
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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: New Here & Need Words of Wisdom
The best advice I got when I was first diagnosed was "don't worry about anything until you have to." You are being treated with state-of-the-art drugs. You are alive and kicking. You have a plan. That's enough for now. This all takes time.
After some experience with scans, I can also say that reading them is more of an art than a science. As someone else reported, dead cancer cells can be hard to tell from live ones on a scan. Since you're having surgery in November, the pathology report from the actual tissue they remove will be far more accurate. Try not to get ahead of yourself. No need to borrow trouble.
That being said, I agree with CoolBreeze (Ann). Being discouraged and depressed and disappointed is perfectly OK too. Feel what you feel, then decide what to do about it. Pamper yourself. Breathe. Live in the moment. And keep coming back to talk to us about it--that way you know you're not alone.
__________________
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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08-23-2014, 05:26 PM
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#9
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Member
Join Date: Jul 2014
Posts: 19
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Re: New Here & Need Words of Wisdom
PinkFlamingo, there is an entire thread on TCHP. I have my 3rd on Wed and will ask the MO about scans to see what is happening. I'm curious, but also, know I'd be sad if they didn't show anything... Stay positive! It is tricky doing this chemo stuff and still having the cancer in our boobs, but the FDA says that is what we must do for Perjeta... So, trying to think on the bright side, I realized if I was healing, when the big D hit, those incisions would HURT, so maybe neo is the way to go. See, always a silver lining, just have to look hard sometimes.
__________________
5/24/14 Found by getting a crumb out of my bra.
5/30/14 Doctor couldn't find it, until I put her finger on it, ordered a Dx Mammo
6/3/14 US core biopsy and marker
6/4/14 Dx IDC 1.5cm
6/5/14 ER+ PR+
6/6/14 met breast surgeon
6/10/14 chest X-ray, clear; blood panel, clear
6/12/14 MRI - now sized at 2-3cm
6/11/14 HER2 overexpression
6/19/14 Saw plastic surgeon, will do skin sparing
6/26/14 BRACA new 2014 guidelines BRACA can be run for adopted
6/20 - 7/7 Lots of different ideas, saw 3 oncologists, changed from mastectomy to Neoadjuvant chemo. with Perjetta
7/16/14 Chemo Cycle 1 of 6; TCHP
12/2/2014 Skin sparing BMx, with TEs, SNB
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08-24-2014, 12:24 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: New Here & Need Words of Wisdom
Regarding neoadjuvant vs. adjuvant chemotherapy: If I had a choice I think I'd have gone with neoadjuvant. Remember, cancer in the breast is not what kills you--it's metastatic disease, in distant organs, that can take you out.
We have had friends in this group who were initially diagnosed and treated at Stage 0--DCIS--who ended up metastatic. Some that I know died. So although it might freak you out to know that tumor is still in your body, getting chemo before surgery can be very beneficial. One benefit is seeing if it responds to the therapy. (I'm not saying yours hasn't. I am not qualified to say. But observing how the primary tumor responds can offer very valuable information.) It's kind of like a canary in a coal mine.
In my case, I was metastatic at diagnosis. At that point, it's known that the problem is systemic, and most of the time treatment is systemic too. I have not had surgery or radiation, just various drug regimens. For people who are metastatic at diagnosis, it's not at all clear that surgery conveys any survival benefit. That being said, surgery is still potentially an option for me. Radiation too, for that matter. My point is there's no rush.
__________________
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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08-24-2014, 10:33 AM
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#11
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: New Here & Need Words of Wisdom
I'm with Amy. I would have loved to do neoadjuvant treatment first. The information gained is valuable.
Yes, it is discouraging that the tumor doesn't appear changed. It isn't growing either, so I feel that is great news.
The surgery with the final pathology will really let you know the true story. Plus it is an earlier stage with negative nodes - all very good news. Once the tumor is removed you will be NED (no evidence of disease) and likely have a 90% chance or better of remaining so.
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