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Old 02-03-2021, 04:37 PM   #1
Donna H
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Join Date: May 2014
Posts: 274
its back

Hi Y'all
Not happy about the news, but I was DX last Thursday with metastatic cancer - liver, spine, lymph nodes and femur. Awaiting brain scan next week. I was first DX on March 13, 2014, stage 2. Have been NED ever since...until I wasn't. I am waiting to find out if the cancer is HER2+ again. I get a port tomorrow.

I take comfort in knowing there are many long term thrivers on this site. I'm only 56. I just started my own company 3 years ago. Business is going great, life is good. Oh, the plans we had. Hopefully this is just a slight hiccup in those plans.

Stay tuned. I'm sure I will be asking for your advice and words of wisdom in the coming days.

Thanks!
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Old 02-03-2021, 08:27 PM   #2
Becky
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Re: its back

We are here for you. What a blow after 16+ years. I am sure it was unexpected. What were your symptom to know something was up?

What was your initial treatment plan and did your onc give you any indication of what your plan going forward will be?

Hugs from me
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 16 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 02-04-2021, 05:23 PM   #3
Melissa
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Re: its back

Donna,

Many women on this site
And many I know
Personally reoccurred years ago and are
Doing incredible. This gives me hope and yes - a slight hiccup!
Keeping You my thoughts -
Melissa
__________________
Melissa

04/06, (42), 2cm tumor, 7/13 nodes, one positive node under clavicle
mastectomy/reconstruction
grade 3, stage lllb, er-65+, pr-90+, her2+++(80%)
4/AC, 12wks TH then 6wks rads
40 wks herceptin, and tamoxifen.
onc test tamoxifen resistance = poor metabilizer
04/07 ooph & on arimidex
08/07 completed herceptin

04/2020 a 14 years NED
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Old 02-05-2021, 12:19 PM   #4
caya
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Re: its back

Keeping you in my thoughts, Donna.


Like Becky, I am wondering what were your symptoms this time around.


Lots of newer meds, treatments etc. now to help you in your fight.


all the best,caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
14 Years NED!!
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Old 02-05-2021, 12:35 PM   #5
Donna H
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Re: its back

I really didnt have any symptoms, except back pain and weight loss. The spots were found on a follow up MRI of a liver hemangioma. And then off to get a biopsy of the new spots.

The back pain and weight loss were originally chalked up to recent gallbladder surgery/slow recovery from that. My GP was the doctor who really took the weight loss seriously.
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Old 02-05-2021, 01:09 PM   #6
caya
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Re: its back

I remember when I was going to my onc. for my yearly check up, I was still on Femara - they weighed me as usual, but I had lost 25 lbs. that year. - On purpose, I needed to drop it, and I did. But my onc. was concerned, and ran a battery of tests just to make sure.


Glad your GP took it seriously.

In the Jewish religion, we have a saying- Man plans, G-d laughs.



Please keep us posted with your treatment plan.


all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
14 Years NED!!
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Old 02-05-2021, 04:53 PM   #7
donocco
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Re: its back

Donna

Very sorry to hear this. Be sure to let us know what medications you will be treated with

Paul
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Old 02-07-2021, 11:10 AM   #8
Laurel
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Re: its back

Donna,

Unhappy news for sure, but you are a warrior and as you say, many on this site have lived long lives at Stage 4 and thrive. You will be one of them! Please circle back with updates. We are here for you and in your corner! Boxing gloves on!

You do not have your stats in your signature. Curious to know at what stage you were dx'd in 2014 and what your hormonal status was as well? You do not have to share if you feel that is too personal. Thinking if hormone positive that characteristic may open up more treatments for you.
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

13 Years NED
I think I just might hang around awhile....

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Old 02-07-2021, 09:14 PM   #9
Pamelamary
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Posts: 483
Re: its back

Hi Donna,
It's 9 years since my metastatic diagnosis - still stable on Herceptin and Letrozole! A real roller coaster ride, but you will feel better once you have a treatment plan in place.
Best wishes.... Pam
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 02-10-2021, 05:56 AM   #10
Lien
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Re: its back

Oh Rats! Not what you wanted to hear. But as you say, lots of mets sisters are doing just fine. I hope you will be one of those. Keep us posted and let us know what you need from us. We are here for you.
__________________
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 02-10-2021, 08:42 AM   #11
Donna H
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Join Date: May 2014
Posts: 274
Re: its back

I was DX in March 2014, stage 2. No nodes involved. 6x TCH then just Herceptin for a year. Brain scan, femur xray and echo tomorrow. Still waiting to find out if it is HER2+ again - first test was inconclusive. It is hormone positive but not sure of specifics. I need to get that paperwork from the onc. The more I read the results, the worse it all sounds. Especially the pet scan. I see my onc on the 19th and I plan to ask for all the facts.

The crazy part is I had my gallbladder removed on Oct 13th and none of this was evident to the surgeon. So these mets have popped up since then.

Waiting is the pits. Thanks for listening!
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Old 02-12-2021, 11:34 AM   #12
Donna H
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Join Date: May 2014
Posts: 274
Re: its back

Hi Again -
I had my brain scan, as well as MRI of my spine yesterday. Dang the brain scan really makes the seriousness of all this very real. Plus all the noise of the machine and the crazy "cage" used to keep your head from moving....not a fan. And now I wait for results - see the onc on the 19th.
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Old 02-23-2021, 01:23 PM   #13
Laurel
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Re: its back

Hey there, Donna!

Checking back after a few weeks off and see you have been riding the scan roller coaster. I was never a fan of them either and you are so right in saying how they make you feel the weight of the diagnosis. I also might add that you never feel more alone than when you enter a scan, wheel into surgery, or toe up for chemo. No one can really "go" with you. It is a lonely experience that is difficult to explain, but I know you and those here know what I mean.

Soon you will have the facts before you and can devise a plan of attack. It is true that although the treatment itself is scary, getting started is empowering emotionally. Please share an update of what you learned from you Onc on the 19th and how you intend to fight the beast.
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

13 Years NED
I think I just might hang around awhile....

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Old 03-04-2021, 02:59 PM   #14
Donna H
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Join Date: May 2014
Posts: 274
Re: its back

Sorry for my absence. Turns out the spine MRI showed a tumor compressing my spine. So I had to have surgery 2 weeks ago. Most of the tumor was removed but some was too wrapped up in the spine and nerve that it was left. I start chemo, Herceptin and Perjeta tomorrow. Rads will follow just not sure when. My back is still crazy sore - I have a foot long incision. So treatment tomorrow could be a real challenge - I can't lay on my back at all and sitting is a challenge - need a pillow or 2. One a positive note - the brain scan was clear.

I am not looking forward to taxtore again....side effects are the pits. But if this buys me time, then so be it. Any insight, words of wisdom are welcome. Thanks!
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Old 03-05-2021, 01:01 AM   #15
donocco
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Posts: 454
Re: its back

Donna

I doubt these are words of any wisdom but there is a clinical study going on using pyridoxine 50mg three times a day plus 1000mcg injectable B-12 once a month to help or reduce peripheral neuropathy from chemo . I have heard of Vitamin B6 (Pyridoxine) having been used before. You could talk with your oncologist.

Paul
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Old 03-09-2021, 10:04 PM   #16
caya
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Location: Thornhill, Ontario Canada
Posts: 2,318
Re: its back

Good luck Donna with your treatments.
Glad the brain scan was clear.


all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
14 Years NED!!
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Old 03-14-2021, 04:13 PM   #17
Mary Jo
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Location: Sheboygan, WI
Posts: 2,577
Re: its back

Hi Donna,

I came on to check in on everyone tonight and I am saddened to read that your cancer has returned. My heart hurts for you right now and I lift you up in prayer. I ask God to give you the strength and peace you need to get through your treatments and all the emotional crap that goes with it all. I know He will and I am thankful for that for you. Hang in there fellow sister.....You will get through this...You will...one day at a time. Sending you my sincere empathetic love and a gentle hug.
__________________
"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

15Years NED

<>< Romans 8:28
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Old 03-30-2021, 07:39 AM   #18
Donna H
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Join Date: May 2014
Posts: 274
Re: its back

Had my first chemo, along with second round of Herceptin and Perjeta on Friday. Yesterday was tough. I didnt expect to be so hard hit by the first chemo. Last time (6 years ago) my first cycle was much easier. Guess age isn't always our friend. My back has been very sore, achy, stiff. The neurosurgeon said chemo would inflame the tumor (before it starts to shrink it) so I guess that is the cause of the current discomfort. I still sit here in disbelief that I am once again going through chemo. Cancer is such a mental game. Thank you for listening.
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Old 03-30-2021, 02:23 PM   #19
jaykay
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Join Date: Oct 2012
Posts: 638
Re: its back

You can do this, Donna. And yes, it is such a mental game.

My thoughts are with you!

Janis
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 03-31-2021, 05:04 AM   #20
Becky
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Location: Stockton, NJ
Posts: 4,172
Re: its back

Rest. The discomfort is the cancer cells dying!! Be gone. We are here for you.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 16 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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