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03-29-2014, 12:51 PM
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#21
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: feeling less and less like I'll be here much longer
Thinking of you, too...just said prayer. Ceesun
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03-30-2014, 11:28 AM
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#22
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: feeling less and less like I'll be here much longer
or a Phase 1 trial for another marker besides Her2?
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04-01-2014, 01:23 AM
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#23
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: feeling less and less like I'll be here much longer
Hi Debbie,
Gamma-knife can be repeated when/if the little tiny ones grow bigger ... Several long-time survivors have used Gamma-knife repeatedly and brain mets were never the major problem.
Be sure to walk regularly to get your strength up as this is going to be a long, tough fight. Exercise increases endorphin which boosts both our mood and immune ability.
Hang in there. There is a 'Calling all stage IV Sisters' thread where you can read inspiring stories and discussions: http://her2support.org/vbulletin/sho...+stage+sisters Check out entry 278 to view the list of stage IV fighters (there are many more as the list hasn't been updated for a year.)
Ask any questions. Someone will have/find an answer for you. We are all in this together.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 04-01-2014 at 01:29 AM..
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04-02-2014, 08:06 AM
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#24
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: feeling less and less like I'll be here much longer
I echo Lizbeth's suggestion. There may be new treatments that could help you.
I won't say "keep fighting" or "think positively." You get to feel what you feel. It's your life. You should do whatever gives you peace, and the best possible quality of life.
Just remember there's more to "healing" than being disease-free. Your wholeness is not dependent on your physical condition.
Nevertheless, if I were in your shoes I'd get a second and even third opinion, from a research hospital that does clinical trials.
Prayers and positive energy to you.
__________________
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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04-02-2014, 10:23 PM
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#25
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Senior Member
Join Date: Jul 2011
Location: ottawa canada
Posts: 367
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Re: feeling less and less like I'll be here much longer
i am so amazed at the perfect words uttered by the women here, deb. I second them all. what i am so in awe of, is that only women who have experienced the fear can say these perfect things.
debsing: i will say a prayer tonight for you. all the beautiful hearts here are holding you as we drift off to sleep tonight. Please feel our love bathing you.
__________________
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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04-03-2014, 09:57 AM
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#26
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Senior Member
Join Date: Dec 2012
Location: Attica, IN
Posts: 371
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Re: feeling less and less like I'll be here much longer
Sometimes words are hard to find, but I read this and wanted to share it. The love of your child is like no other, so I feel your pain.
When Saul was chasing King David and threatening to kill him, God restored his courage and confidence. When David lost his son, God restored his soul. David wrote Psalm 23; The Lord leads me besides still waters and he restores my soul.
I will say a prayer that God will give you hope, strength, and restore your soul for the road ahead just like King David.
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant
9/2012 Pre-adjunctive TCH chemo.
12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.
12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+
2/27/13 6 weeks of IMRT radiation finished
2/2013 Started on Tamoxifan 5 years.
8/2013 will take last Herceptin, 17 treatments total every 3 weeks.
BRCA1 & BRAC2 - Negative
August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.
3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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04-03-2014, 05:31 PM
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#27
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Re: feeling less and less like I'll be here much longer
DEBSING -- first I am so sorry you are going through this ordeal. And I get that's it's really scary and I know that look from those who are coming to you that says, You're a dead woman. I'm all too familiar with that.
I just KNEW they were wrong. Super compassionate pp who just don't get what it's like to be on this side of those eyes.
You say you have a blockage. Have you been told that specifically? Meaning your bowels/intestines are blocked and you can't poop? Are they giving you enemas and meds to unblock you?
I'm confused, cause then you say no one will drain your ascites. That's a whole other issue. Is your belly bloated? Is a gastro doc conferring with you? Is it liver related? Does it involve pancreatitis?
Are you getting answers? It doesn't sound like it. Do you need a 2nd independent oncological opinion? That's what I'm thinking.
I pray for your physical and emotional relief.
Are they doing tests? Taking xrays? Getting to the root cause of your symptoms?
Please DO NOT DESPAIR OR ALLOW FEAR TO TAKE HOLD OF YOU AND YOUR ACTIONS. TAKE CHARGE OF THIS SITUATION IMMEDIATELY AND DETERMINE TO MAKE GOOD PROGRESS STARTING TOMORROW -- LIKE 6 AM TOMORROW!
Sending you hugs and the strength to take charge of this situation as best you can.
Do you have someone close to you advocating for you? If not, YOU must participate in this process and find out what is precisely going on with your body.
Please let us all know how you're doing, cause your Sisters truly care about you!
LOVE,
ANDI
I'm going to post this in your other thread too, cause I really want you to hear what I have to say...
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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04-09-2014, 02:19 PM
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#28
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
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Re: feeling less and less like I'll be here much longer
Debsing,
Sorry. I have been kind of busy for the past six to eight months. Nina had Intrathecal Herceptin with excellent results. Have they looked at this for you? Ommaya reservoirs are used commonly for Brain Primary cancer, so it was not a big jump to think about them for Her+ brain mets. Herceptin works for many Breast cancers not in the brain or spine. I was able to convince doctors to use this concept. Started at 40 mgs and increased to 80 mgs on a 62 kg body weight. High dose is needed due to the quick change out of the drug in the spinal fluid. 26 months since start of treatment. There is a spot that has been around for four years that is a little bit of a concern. The question is whether it is due to Radiation, return of disease, or from the Herceptin attacking the cells. Other options are triple the IV dose of Herceptin to overcome the blood brain barrier; disrupt the BBB with other means; or play whack a mole using SRS (Gamma knife).
Keep positive. This is an area that many realize is impotrtant.
Paul
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04-14-2014, 03:46 PM
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#29
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: feeling less and less like I'll be here much longer
The goo news is that you have another option. And if the bad news happens, you will get a second opinion and/or a trial. Or perhaps you will decide that enough is enough. You never know what it will feel like when you climb the next step on your cancer journey. Whatever that step is, you will deal with it.
How old is your daughter?
Sending gentle hugs
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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