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Old 08-27-2015, 01:26 AM   #1
irishrelative
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Join Date: Aug 2015
Posts: 16
Relative with Breast cancer

Hi there,

Relative of mine diagnosed in June Her2+ and I think ER and PR+. The surgeon did a lumpectomy plus SNB. He said they found very minimal traces in 1 lymps node - from research do you think this means micromets?

She started chemo at the start of this month, will begin Herceptin after 4x of AC whilst on Taxol.

My question is she was given a CT scan yesterday. She believes this is before she starts Herceptin i.e. they want a good picture of the organs before Herceptin beings to look for an damage that will occur. She is also booked to have a MUGA later this month.

The surgeon, oncologist and radiology doc have all said that the operation was a success, that the margins were clear 1.3cm tumour was what she had and that anything now is preventative.

As she's had a CT scan we are worried it might have spread elsewhere. Would the doctors have known this from the blood tests they did. No one ever mentioned mets to her but she is slightly concerned.

Also at the time she thougth they said she was stage 3 but looking online I don't think she can be...1.3cm 1 trace in nodes to me puts her at 2. Perhaps they said Grade 3 or else maybe the HER2 is+++.

So much information online. She has appointment with oncologist later in month to see how she is getting on with chemo, but it's a bit of a wait. She is petrified of mets.
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Old 08-27-2015, 04:00 AM   #2
sarah
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Re: Relative with Breast cancer

Hello Irish,
I believe the standard treatment with any lymph node involvement would include chemo and radiation and as she is HER2+ would include Herceptin and then if she is ER+ some sort of AI (aromatase inhibitor), if she's put on one, she should try taking it at night. Good news that the margins are clean. Not sure how the grading goes but always best to be aggressive with cancer. Sounds like she's in good hands. Blood tests I believe can show a problem but are generally taken every so many months to be sure there isn't a constant uptick or that the drugs are effecting an organ but they are not a way to rule out cancer. With Herceptin, she'll need to have a heart test (a heart sonogram) every 3 months to check if it is effecting the heart. Herceptin is a miracle drug.
This is a great site with very knowledgeable people on it so you will find good advice, much better than mine.
good luck to her. Each year things get better. I am sure the diagnosis was a shock to her and all of her friends but breast cancer is one of the best treated and known. Remember if she is ever concerned, she should get a second opinion.
They say exercise is good, avoiding dairy and enjoy life and be with friends. She'll be very tired on chemo. Get a bicarbonate gargle from the pharmacy to avoid "mushrooms" in the mouth and good skin cream. There are also hardening nail polishes made for chemo patients if she finds her nails breaking too easily. Mine was called Evonail, it's expensive but it works.
health and happiness
sarah
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Old 08-27-2015, 04:23 AM   #3
irishrelative
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Re: Relative with Breast cancer

Sarah thanks for your reply.

I suppose we are concerned at how early she's had a CT scan. I presume if they suspected a spread thy would have said it.

Is the fact that margins are clear an indicator that it is less likely to spread?

Unlike doctors in America, from my experience on reading message boards, information is only given on a need to know basis
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Old 08-27-2015, 05:50 AM   #4
Carol Ann
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Re: Relative with Breast cancer

Hi irishrelative, they did the scan because she had lymph node involvement. It is standard procedure here in the US, and I would imagine where you are, too ... to have a scan with ANY node involvement, no matter how small, OR if the tumor is over a certain size. That being said, I had no scans because I had no positive nodes and the tumors were under a certain size.

Clear margins are good ... although unfortunately, when it comes to breast cancer, there are no guarantees. But it is better than not getting clear margins!

Mets are always a concern ... there is no other way to say it. But it sounds like she has a good treatment plan in place, and like Sarah said, Herceptin is a game changer for HER2 +++ breast cancer, and the prognosis is much better than it used to be.

Have her doctors mentioned anything about Perjeta? It is another relatively new drug that is given along with Herceptin for Stage II breast cancer, again lymph node involvement or tumor over a certain size. Another treatment I did not qualify for.

Keep us posted, and best of luck!

Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 08-27-2015, 06:00 AM   #5
irishrelative
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Re: Relative with Breast cancer

Thank you.

Doctor described the tumour as small 1.3cm as he had to put something in - a piece of wire - to be able to find it during the procedure.

We were so delighted when they said they got all the cancer, but not we are worrying.
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Old 08-27-2015, 07:42 AM   #6
sarah
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Re: Relative with Breast cancer

Hello Irish,
Like Carol Ann, I've heard great things about adding Perjeta to the mix so see if it's possible to add in. Also since she's had lymph nodes removed, I assume she's getting some kind of physical therapy for her arm?
Good that she has you looking out for her.
hugs
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Old 08-27-2015, 02:14 PM   #7
Carol Ann
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Re: Relative with Breast cancer

Thanks for mentioning the PT, Sarah ... yes she should be evaluated for possible lymphedema, she's at risk because of the node removal.

See my signature ... I am doing fine wearing the sleeves on both arms every day, I don't need the gloves, but it was crucial that I got started on the therapy when I first noticed swelling, for me it started across my knuckles in my left arm, the side I had the most nodes removed on.

Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 08-28-2015, 01:00 AM   #8
irishrelative
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Re: Relative with Breast cancer

Hi there,

She isn't having any physical therapy, but she appears to be fine. No swelling. Her operation was early July and is healing well.

Docs told her her hair would fall out within 7 to 10 days of her first round of chemo which was 2.5 weeks ago. This hasn't happened yet.

It is awful waiting for it to happen. She doesn't want it happening, but yet as it is going to happen, she just wants to get it over with.
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Old 08-28-2015, 06:50 AM   #9
jaykay
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Re: Relative with Breast cancer

Typically, a sentinel node biopsy (SNB) only removes 1-4 nodes, leaving the rest. Lymphedema is very much minimalized, which is why most docs do an SNB instead of a full dissection. If there are mets to the lymph nodes, they may suggest radiation to the nodes which does pretty much the same as a full dissection when it comes to lymphedema. That's what happened to me - 1 out of 4 nodes were positive. I only wear a sleeve when I fly (on a plane, of course!) but never give blood or get blood pressure measured on that arm

My hair fell out 4 days before my 2nd chemo. Everyone is different..

Good luck to your relative

Janis
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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 08-28-2015, 07:07 AM   #10
irishrelative
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Re: Relative with Breast cancer

Yes. She is doing fine and movement of arm is back to normal, though she still has scarring.

The doctor said traces found in one lymph node I don't know if that means full involvement or micro mets.

I am surprised they didn't do CT scan at diagnosis, for staging, but are now doing it once chemo has started? I presumed it would have been done earlier on in the procss.
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Old 08-28-2015, 07:56 AM   #11
JessicaV
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Re: Relative with Breast cancer

Hi, Here in Australia, most of us get a bone scan and a CT scan of torso before any surgery to help them get the staging right. I had no node involvement and my IDC was 2.2cm. They do these tests to see if there are any visible tumors in liver, lungs, bone, but generally can only measure those over .5 to 1cm. So they generally cannot know for sure, but they can see if the disease is systemic rather than just in the breast, in which case they may provide different treatment options. But she's got it at a really good time because the treatment options are so good these days.

A problem with HER2+ cancers is that they are aggressive and fast growing and prone to shed cells even before surgery, that can spread through the body in an innocent form and find a suitable niche, and grow into new distant cancers. So the primary tumour has ofter become Grade 3 before it is diagnosed, (i.e. very aggressive and fast growing and prone to metastasise).

However, we are very lucky that some very clever scientists put their all into developing a way to effectively treat HER2+ cancers and stop them spreading and often(it seems)even to cure them, developing the range of treatments that began with Herceptin. And even if the cancer does metastasise, there are good ongoing treatments that often seem to allow a person to live out a full life despite having breast cancer as a chronic illness. My oncologist said to me that 10 years ago, without treatment after surgery, I had a 45%chance the cancer would be back within 5 years in a form that would almost certainly kill me. Now, with the TCH treatment, I have about 8% chance it will be back within 5 years, and then there is a good chance it will become a permanent fixture not a death sentence. So do not despair.

If she has any node involvement, even "micromets" I think they call it Stage 3. Be aware that whether or not her cancer is found to have entered the lymph system, and whether or not all the original tumour was completely removed by surgery, this is a cancer that does tend to seed and spread and to try to grow back elsewhere in the body, mostly within about 3-5 years. So this is why the chemo and radiotherapy are so very important: they will do a good job of mopping up any tiny mets that start before or during her treatment period, which is the time when the risk is probably highest. It is scary to live with this reality, of not knowing for sure whether you still have any seed cancers somewhere that may start up. Learning to monitor vigilantly without living a life of fear is a skill. Learning to leave death and dying until it is really happening, which could be at the end of a very long life, is hard to do after confronting the truth of having a potentially fatal disease.

So value her and love her, and know she has a pretty good chance of having a good long life if she is able to find the courage to make it through chemo and radiotherapy and hormone treatment to control the ER+ environment. Which I am sure she will.
What relation is she to you?
best wishes
Jessica
__________________
1997-2004 many cysts, many MG & U/S: polycystic breasts.
Sept 2013 found lump,Cyst?? forgot lump.
Dec 2013 GP check, Referred for U/S, MG,FNA.
7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail."
Cancelled my psych clients for the week.
8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon.
Cancelled my psych clients for the month.
13 Jan
14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan,
16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done.
19 Jan 14 discharged home with 1 drain.
22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment.
26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans.
30 Jan 14 HER2+ high amplification, 13 gene copies per cell.
21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up.
Cancelled my psych clients for 6 months.
Feb 14 First MUGA test: 71%,
First C15.3 test: 20
7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and
Claritin, reflux/indigestion helped by Somac.
July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily.
Sept 14 Second MUGA test: 69%
Cancelled my psych clients for 2014
Dec 14 Third MUGA test: 70%
Second C15.3 test : 20
Cognitive fatigue delays return to work.

March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring.
July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing
Aug 2015 Heart good, no evidence of cancer, just Fatigue.
May 2019 Melanoma 1.5cm Stage 1 by right collarbone(was present as large freckle in 2014 and cut through by breast surgeon to remove fatty cyst at same time as mastectomy.) Melanoma removed leaving scar from shoulder to breastbone. In hospital twice for IV antibiotics. Told catagorically this could not be BC mets.
Dec 2019 Still NED, still fatigue in late afternoon, but have my brain back in the early mornings. So most days I watch the sunrise and hear the birds morning chorus in my bush backyard and am glad to be alive and to be me still.

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Old 08-28-2015, 08:49 AM   #12
Carol Ann
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Join Date: Dec 2013
Posts: 1,045
Re: Relative with Breast cancer

Jessica's beautiful, honest post above says it all.

Your relative is lucky to have you in her life!

Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 08-29-2015, 09:08 AM   #13
SoCalGal
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Posts: 1,607
Re: Relative with Breast cancer

Unlikely to experience lymphadema from Sentinel Node Biopsy. In the olden days, I had about 20 nodes removed, and 20 years later I don't have any problems, including I've flown extensively without a sleeve - I wouldn't add that to the worry list.

Re-micro mets or not, you will never know but your relative is doing treatment which is appropriate for highest survival odds. Sounds like the medical team is doing the correct things, the scan is good for a baseline and to make sure cancer is not elsewhere prior to treatment.

This is a good resource for information, so welcome, although sorry you have to be here!
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 08-29-2015, 02:27 PM   #14
Carol Ann
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Posts: 1,045
Re: Relative with Breast cancer

Sorry, I saw "physical therapy" for the arm and just thought lymphedema because of what I went through ... and I actually never needed any PT for either arm!

Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 09-01-2015, 12:14 PM   #15
tricia keegan
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Re: Relative with Breast cancer

Hi,

Its very usual here in Ireland to have a Mugga and bone scan before chemo and is routinely done, I had both tests ten years ago myself and its still the norm here.
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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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Old 09-02-2015, 04:12 AM   #16
irishrelative
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Re: Relative with Breast cancer

Thanks for that Tricia. She does second round of chemo next week.

I think she is going for an ecg next week and the scan was last week. No mention of bone scan yet, just CT - don't know what the significance/relevance of that is.
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Old 09-02-2015, 04:13 AM   #17
irishrelative
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Re: Relative with Breast cancer

Thanks for that Tricia. She does second round of chemo next week.

I think she is going for an ecg next week and the scan was last week. No mention of bone scan yet, just CT - don't know what the significance/relevance of that is.
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Old 09-02-2015, 11:12 AM   #18
tricia keegan
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Re: Relative with Breast cancer

I was dx ten years ago so it's possible they've switched to a CT scan now maybe? Try not to read anything too much into it as Dr's can have us worried sick without realizing it.
__________________
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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Old 09-02-2015, 02:19 PM   #19
Juls
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Re: Relative with Breast cancer

Hi
Just reading your posts. I had CT, Bone Scan & Echo before starting treatment.This was after Lumpectomy. In fact treatment was delayed a few weeks because Hospital staff had forgotten to book CT!!
(Did not go down well with Consultant Oncologist particularly as I had started steroids in prep for chemo next day!!)
I was told that scans required before starting treatment and this was standard.
Juls
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Old 09-03-2015, 04:07 AM   #20
irishrelative
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Re: Relative with Breast cancer

She had a CT scan, no mention of a bone scan yet and will get the tests before starting on Herceptin too.

The docs kept saying treatment preventative, but how can they say that for sure before they do scan?

We are dealing with the cancer diagnosis as they reassured us it's gone, but now waiting for the scan results, the what if? question is creeping in
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