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Old 06-03-2014, 07:08 PM   #1
k1982
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Join Date: Jun 2014
Posts: 16
please help! is my cancer worse than anyone else's because it has never went away?

Hello all,
I am sorry if this seems an unusual thing to ask but after numerous trips and hours of questioning the medical staff at the hospital I attend they say perhaps all chemotherapy and radiotherapy I have had possibly did not work and my cancer has always remained in my body from when I was diagnosed until now which has been 2 years and 3 months. Does this mean my cancer will never go away?
I am now on tdm1/kadcycla and I pray that it is working.
I am sick with worry and do not know what to do.
Please give me some advice.
Thank you for reading x
__________________
January 2012 - itchy nipple on right breast
February 2012 - lump appeared in right breast
March 2012 - diagnosed with breast cancer in right breast, mastectomy on right breast found that 12 of 13 lymp nodes in armpit were positive. Her2+ ER -
May 2012 - fec t chemotherapy
September 2012 - herceptin began and fec t ended
November 2012 - radiotherapy to breast, neck and armpit
March 2013 - healthy left breast removed and reconstruction on both breasts
May 2013 - lump appeared on neck at right side, surgery removed two nodes and one showed cancer her2+ er Started vinorelbine chemotherapy along with herceptin
July 2013 - cerebral venous sinus thrombosis diagnosed, hospitalised for one month
August 2013 - continued with vinorelbine chemotherapy and herceptin
November 2013 - vinorelbine chemotherapy ended and continued with herceptin on its own
February 2014 - lump appeared in neck in same area and tdm1/kadcycla chemotherapy began
June 2014 - have received 3 x tdm1/kadcycla and await body scan this week
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Old 06-03-2014, 08:01 PM   #2
mamacze
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Location: Madison, Connecticut
Posts: 633
Re: please help! is my cancer worse than anyone else's because it has never went away

This is a scary time for you. You are still trying to beat down the beast and now you are waiting for your body scans. You thought you were giving your cancer a one two punch and then your doctors ponder whether your prior treatments were effective. You feel like you are on a roller coaster, I am sure. And I am sure you must be thinking - I donít belong to this clubÖ.UGH!!!
Here are some things you can do.
Keep educating yourself. Knowledge is power, ignorance is not an excuse. Have you looked into clinical trials?
Make sure you are eating healthfully.
Get your spiritual house in order, it helps to be able to meditate or pray - depending on your spiritual persuasion - and simply find peace during these stressful times.
Surround yourself with people who love and support you. You are young energetic and worthy of great love.
Hang in there. Be an active questioning team player in your care.
And donít forget you always have your sisters here to come to with questions.
Peace be with you sweet angel. Please keep us posted on your scans.
Love and Hugs,
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


2020 On Herceptin and NED continues - WOOT WOOT!
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Old 06-03-2014, 08:18 PM   #3
k1982
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Join Date: Jun 2014
Posts: 16
Re: please help! is my cancer worse than anyone else's because it has never went away

Dear Kim, thank you so much for your beautiful message. I feel I was doing all the right things during the first and second chemo, eating well, relaxing. Yoga, arts and crafts but all those good things didn't work and the cancer remained or came back.
I feel I am frightened that my oncologist might tell me something I do not want to hear.
I am frightened that my life is over.
My dream right now would be to get pregnant and give my husband a baby.
I really appreciate your kind words x
__________________
January 2012 - itchy nipple on right breast
February 2012 - lump appeared in right breast
March 2012 - diagnosed with breast cancer in right breast, mastectomy on right breast found that 12 of 13 lymp nodes in armpit were positive. Her2+ ER -
May 2012 - fec t chemotherapy
September 2012 - herceptin began and fec t ended
November 2012 - radiotherapy to breast, neck and armpit
March 2013 - healthy left breast removed and reconstruction on both breasts
May 2013 - lump appeared on neck at right side, surgery removed two nodes and one showed cancer her2+ er Started vinorelbine chemotherapy along with herceptin
July 2013 - cerebral venous sinus thrombosis diagnosed, hospitalised for one month
August 2013 - continued with vinorelbine chemotherapy and herceptin
November 2013 - vinorelbine chemotherapy ended and continued with herceptin on its own
February 2014 - lump appeared in neck in same area and tdm1/kadcycla chemotherapy began
June 2014 - have received 3 x tdm1/kadcycla and await body scan this week
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Old 06-04-2014, 09:15 AM   #4
'lizbeth
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Re: please help! is my cancer worse than anyone else's because it has never went away

K1982,

I am sorry that you progressed with the treatments you had.

Have you started to look at clinical trials? You can go to http://www.clinicaltrials.gov/

Also:

https://www.breastcancertrials.org/bct_nation/home.seam

Have you been tested for BRCA mutations?

It is too soon to toss in the towel! Let us know what the scan results are please. We are wishing you good results with TDM1. If I remember correctly it took time to work for others.

Last edited by 'lizbeth; 06-04-2014 at 09:16 AM.. Reason: typo
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Old 06-05-2014, 03:00 AM   #5
Lien
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Re: please help! is my cancer worse than anyone else's because it has never went away

This all must be such a scary experience. I can understand the fear and the panicky feeling. I know you have dreams about your future, and those may or may not come to be. For now, all you can do is get the best treatment available, and it seems like that is what you are getting. Over the ten years I've been on this board and on another support forum, I've read about several women who tried treatment after treatment until they found the one that worked for them and had them "dancing with NED", as we call a diagnosis of No Evidence of Disease. Also, I know even more women who are stable on a treatment for years, some even for over a decade and counting. They were at the point where you are now until they found their "Magic Bullet".

So even though it is very tough right now, it doesn't mean there is no hope. No one can predict how your cancer will develop. We can just do everything we can to stop it. And there is still a lot we can do. Like someone else wrote: educate yourself. Ask, read, and process all the info you can get. It may give you a better idea of your options.

And remember that those who do well don't write as much on these boards. They are moving on, living a full life, having a good time. Only some of us keep coming back here.
So what you read on these pages is mainly stuff about people who are not (yet) doing so well.

Try to take a deep breath, and distract yourself as much as possible. Ask your medical team to explain things and ask for a number you can call when you are scared about symptoms. And like someone else said: pray, meditate, do breathing excercises. They help.

I know this is tough, but it can be done. It just takes a lot of practice. Do you have people around you who support you? It's time to reach out to them now. And if you don't, can we help you find some?

Hang in there!

Love

Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 06-05-2014, 09:49 AM   #6
phil
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Join Date: Nov 2010
Posts: 393
Re: please help! is my cancer worse than anyone else's because it has never went away

my wife is doing great on t dm-1. she was in big trouble before she got it. at her 1st scan ( after 3-4 doses at 3.6 )she had some shrinkage of vsisble liver tumors - from 7 down to 4. had to reduce dose to 3.0 because of low platelets, but still saw slow, steady shrinkage to NED by the end of the 1st yr. on t dm-1. she is still ned ( no evidence of disease ) over 3 yrs later . now on maintenance dose of 2.7 monthly.
here is wishing you eve n better initial results.
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Old 06-05-2014, 12:23 PM   #7
k1982
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Posts: 16
Re: please help! is my cancer worse than anyone else's because it has never went away

I just want to say thank you to everyone. All your replies made me cry with happiness. It's good to know that there are people here who know what I am going through, people who understand me and also very inspiring to hear positive stories and tips on how I can help myself.
Thank you so much x X
__________________
January 2012 - itchy nipple on right breast
February 2012 - lump appeared in right breast
March 2012 - diagnosed with breast cancer in right breast, mastectomy on right breast found that 12 of 13 lymp nodes in armpit were positive. Her2+ ER -
May 2012 - fec t chemotherapy
September 2012 - herceptin began and fec t ended
November 2012 - radiotherapy to breast, neck and armpit
March 2013 - healthy left breast removed and reconstruction on both breasts
May 2013 - lump appeared on neck at right side, surgery removed two nodes and one showed cancer her2+ er Started vinorelbine chemotherapy along with herceptin
July 2013 - cerebral venous sinus thrombosis diagnosed, hospitalised for one month
August 2013 - continued with vinorelbine chemotherapy and herceptin
November 2013 - vinorelbine chemotherapy ended and continued with herceptin on its own
February 2014 - lump appeared in neck in same area and tdm1/kadcycla chemotherapy began
June 2014 - have received 3 x tdm1/kadcycla and await body scan this week
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Old 06-07-2014, 07:29 AM   #8
Mtngrl
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Re: please help! is my cancer worse than anyone else's because it has never went away

Dear K,

I echo what the others said. I just want to add my encouragement and a few other thoughts.

One thing to realize about cancer is that each of us has a specific kind that's personal. Cancer is a person's own cells getting out of whack. So although we can learn things from what has worked for other people, every person is different.

Technically, once cancer spreads (metastasizes) from the original tumor to bones, liver, etc. then no one expects it ever to go away, so you're right about that. It doesn't mean yours is worse than "everybody else's." You have lots of company in this club no one wants to join. For example, here's an excellent organization that focuses on metastatic breast cancer: http://mbcn.org/

Although it's not curable, it's treatable. Some people live a long time after a diagnosis of metastatic breast cancer.

The best thing you can do for yourself is decide not to worry about anything until you have to. Learn to stay in the now. You're alive now. You have today.

Waiting for scan results is the worst. I'm in that boat myself today. I had a scan on Thursday, and I'll see my oncologist Monday. I try not to think about it, but thoughts intrude anyway.

I tell myself that scans are just information. We need to know what's up, so we can decide what to do next.

TDM-1 caused too many side effects for me to stay on it, plus there were indications of progression. But it works like magic for some people. And don't worry. There are lots more medications available, and more are being developed all the time. Hang in there. Let us know what you find out from your scan.
__________________
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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Old 06-07-2014, 01:10 PM   #9
Lani
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Thumbs up Re: please help! is my cancer worse than anyone else's because it has never went away

Actually your cancer is MUCH better than most

Your cancer has remained Loco-regional rather than distantly metastatic

Almost everyone who dies of breast cancer dies of distant metastasis rather than local or locoregional disease.

It appears your breast cancer likes to travel to lymph nodes which drain the breast via spread via the lymph system rather than than distant metastasis in bone, liver, lung, brain, adrenal or leptomeninges via the normal circulatory system which consists of arteries, veins and capillaries.

You may also consider yourself lucky that the areas your tumor seems to have spread to are easily accessible for biopsy so that it becomes clear quickly if treatment is working or not, so that other treatments might be substituted which may prove more effective. Tumors may change when they spread and it is possible that these nodes are her2 negative (in which case herceptin won't necessarily help) or their ER status may have changed. Again, you are lucky as your tumors seem to pop up in easily visible areas and areas easy to biopsy

From what I have learned in my reading and at conferences, these tumors utilize different strategies/pathways to spread to the lymph nodes than via the circulation.

You seem to have what they call LABC (locally advanced breast cancer) , more correctly LRABC (loco-regionally advanced breast cancer rather than distantly metastatic breast cancer. Again, stats seem usually much better for LABC than MBC.

Perhaps one of your doctors will send the tumor and representative nodal metastasis specimens for genetic/pathway testing to find the best combination of treatments. Not standard of care, but there seem to be more trials involving such testing and in light of the fact that various treatments have not yet proved sufficient perhaps more information on what drives your tumor might help pick your next therapy choice(s)

Chin up-- many reasons to consider yourself lucky!

PS I hope I posted this on the right thread--when I started the post I saw clinical information which perhaps has now been deleted, or perhaps I have posted on the wrong thread. The clinical info I saw showed no evidence of distal mets, only "spread" to the neck.

If I have misposted, please forgive me.
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Old 06-15-2014, 03:00 PM   #10
k1982
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Join Date: Jun 2014
Posts: 16
Re: please help! is my cancer worse than anyone else's because it has never went away

Hi lani, I was wondering are you in the medical profession?
__________________
January 2012 - itchy nipple on right breast
February 2012 - lump appeared in right breast
March 2012 - diagnosed with breast cancer in right breast, mastectomy on right breast found that 12 of 13 lymp nodes in armpit were positive. Her2+ ER -
May 2012 - fec t chemotherapy
September 2012 - herceptin began and fec t ended
November 2012 - radiotherapy to breast, neck and armpit
March 2013 - healthy left breast removed and reconstruction on both breasts
May 2013 - lump appeared on neck at right side, surgery removed two nodes and one showed cancer her2+ er Started vinorelbine chemotherapy along with herceptin
July 2013 - cerebral venous sinus thrombosis diagnosed, hospitalised for one month
August 2013 - continued with vinorelbine chemotherapy and herceptin
November 2013 - vinorelbine chemotherapy ended and continued with herceptin on its own
February 2014 - lump appeared in neck in same area and tdm1/kadcycla chemotherapy began
June 2014 - have received 3 x tdm1/kadcycla and await body scan this week
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Old 06-16-2014, 07:18 PM   #11
mamacze
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Location: Madison, Connecticut
Posts: 633
Re: please help! is my cancer worse than anyone else's because it has never went away

Once again Lani comes through with a comforting truck load of facts. All relevant points and I hope K1982 - maybe you are starting to feel a bit better? Either way - I am sending love and light directly to you and hope to hear soon about a dance with NED
XO
__________________
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


2020 On Herceptin and NED continues - WOOT WOOT!
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