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11-25-2011, 05:24 PM
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#1
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Member
Join Date: Nov 2011
Location: Calgary, Alberta, Canada.
Posts: 19
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I really had no idea..
About all things related to breast Cancer before I was diagnosed. No one in my family had it so it came as a complete shock. Yesterday I went for a meet with my oncologist but that was not where I got my eyes opened. There was a young lady there that showed me many ways that I could be helped. I had no idea that those runs/walks for BC were for patients as well as for research I just always assumed it all went to research. I have insurance which usually pays 80% of my drugs but there are limits and there is a list and if the drug is not on it then you have to fight to get it. The Neulasta was one and another nausea fighting drug was another. I was taken to see a Social Worker and found that I was eligible to get aid for drugs that were not covered, also aid for parking (which is astronomical at the hospital I go to) and also even up to 100 dollars on my food bill. To say I was in shock is an understatement I had no idea these resources were out there. Needless to say my son and daughter and best friend are all renewing their vows to enter in the next BC benefit to run/walk. Now I have told people that the money from these runs/walks actually benefit people who cannot afford their medicine it makes them see it in a whole different and more favorable way.
Anyway, had my first chemo today and so far just have a headache. Had a portacath installed two days ago and I think it was certainly an advantage to have one.
Sorry for rambling on, love this site, wanted to let everyone know help is out there, not sure about anywhere else but definately in Canada!
__________________
Diagnosed June after Mammogram.
September 26th 2011 - Left breast Mastectomy and axillary Dissection:
Ductal carcinoma in situ nuclear grade 3
Lobular carcinoma in situ focal
Paget's disease of nipple
One of 12 axillary lymph nodes with metastatic carcinoma
Negative for extranodal extension
Metastic tumor deposit measures 1.5 cm in maximal dimension
ER 0/8 PR 0/8
Her2 +
Treatment node positive HER2+ breast cancer treatment
Chemotherapy FEC-DH
Herceptin for remainder of year.
Chemo starts November 25th 2011.
Blog: http://importanceofmammograms.wordpress.com/
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11-26-2011, 09:31 AM
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#2
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Senior Member
Join Date: Jul 2011
Location: ottawa canada
Posts: 367
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Re: I really had no idea..
britbee so sorry bout your paget's, etc. and other health challenges. so happy for you that all the treatment is free. i, too, live in canada. all drugs (except Emend, the good anti nausea drug, which you should get ur oncologist to prescribe asap, btw) are free if you have cancer. neupogen just got put on the free drug list too. cannot imagine being like the protagonist in Breaking Bad, an american character in the southwest, having to face a life of crime to pay for treatment, or to just die because you are poor.
hey, obama tried .....to change all that. we'll see if the big hmo's let him win.
__________________
fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011
mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.
I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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11-26-2011, 03:11 PM
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#3
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: I really had no idea..
Britbee--glad you're getting the help you need. Good luck with all that.
Note, however, that not all breast cancer groups are equally helpful. "Susan B. Komen for the Cure" claims that it gives financial help to cancer patients but people have reported that (a) only one chapter, the New York one, administers the financial aid, (b) the phone is never answered and there's no voice mail, and (c) there's no way other than calling the phone that never gets answered to contact them to apply for financial assistance. Also, although Komen raises billions with its runs/walks/sleep-ins, etc., it gives only about 19% of proceeds to research. The leader, Nancy Brinker, recently said she didn't think the cure would come from a laboratory. (Really? Can you name any diseases that have been cured outside a laboratory?) But there are small nonprofits that do provide actual assistance to human beings who need it.
Some "pink ribbon" situations involve absolutely no monetary contribution to breast cancer or its cure, so Komen is not the worst of it, by any means. Before you run/walk/buy/donate be sure you know where the money is going. Your best bet is to donate directly to a reputable program.
__________________
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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11-26-2011, 04:07 PM
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#4
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: I really had no idea..
Britbee, I live in Ireland so all my drugs are free too as was everything during my cancer tx including Neulasta etc and I'm very grateful for that as know many ladies in the U.S who fell on hard times with no insurance and had to fight for these drugs at a time they ill could afford to do so.
Amy, I moderate the susan g komen message boards and must beg to differ with you, I've been doing this for four years and posting there for six, and can't begin to tell you the numbers of women who have had free Mammo's and other help and advice provided by this organization and while I don't have numbers on hand right now of $ amounts given to this type of help I seriously question its as low as you were told.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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11-26-2011, 07:48 PM
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#5
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Senior Member
Join Date: Jun 2010
Location: TN
Posts: 83
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Re: I really had no idea..
You can do a little research on any non-profit by going to www.guidestar.org. Registering is free and you can access any IRS 990 at no charge. Very helpful in deciding which charities to support.
__________________
DX 5/17/10 IDC & DCIS
BMX 6/3/10-Stage 1, 0/2 nodes
ER+/PR-, Her2+
Chemo 7/8/10-10/21/10
FEC X 3, T X 3, Herceptin weekly for 9wks
Start Arimidex for 5 yrs-11/22/10
12/16/10 NED!!!!!
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02-24-2012, 12:25 AM
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#6
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: I really had no idea..
Im so glad you found those resources, and that you shared it with everyone here.
Im am also shocked to learn that Susan Komen only gives 16 percent to research. What???? Where does all the money go?
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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02-25-2012, 05:48 AM
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#7
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Guest
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Re: I really had no idea..
Hi
its challenge for you to fight with disease specially your cancer you may succeed in you fight against cancer if you have to dare to defeat the cancer the solution of cancer is just chemotherapy.
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02-25-2012, 11:52 AM
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#8
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: I really had no idea..
Britbee, glad you are finding resources. Keep looking. There are often local grassroots charities or foundations that offer help. I know in my area the social workers are able to obtain assistance with rent, meds, treatments etc on an individual basis from local organizations. It is too bad your hospital charges patients for parking! Can't you be excempt from that? My cancer center offers free valet parking. Also, while I was receiving chemo and dragging myself around, my doc authorized a temporary handicapped parking permit so I did not have to walk too far while shopping etc.
Anyway, social workers are miracle workers. I am glad you have them on your team.
Keep the faith.
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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