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Old 08-09-2012, 04:48 AM   #1
Manish
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Metastatis Breast Cancer - Herceptin required

Hello,

I am new member with this support group and this is my 1st post.

My wife Dimple (37Yrs), is undergoing treatment for Metastatic Breast Cancer Stage IV. Test results were as follows:
  • FNAC left breast suggested Metastatic Carcinoma
  • PET-CT showed necrotic mass lesion, bilateral cervical supraclavicular infraclavicular left axillary, retro pectoral, bileteral internal mammary lymphadenopathy.
  • Immunohistochemistry revealed tumor to be ER/PR positive, C-erb B2 (HER-2/neu) 3+.
Her Medical hispory is as follows:
  • Breast Cancer was confirmed during 1st Week of June 2012.
  • Cemotherapy was started during 2nd week of June 2012. Following cemo are being given at present:
    • Inj. Adriamycin (60mg/m2)
    • Inj. Cylcophosphamide (600mg/m2)
    • Inj. Zometa (4mg)
  • She will receive her 4th Cemo on 13/14 of Aug. 2012.
Doctor had recommended Herceptin to be given along with Cemotherapy from 5th Cemo onwards. Even after understanding the Pros of Herceptin, I am afraid of letting her have Herceptin as she weighs only 45 and not sure how she will cope up with the side effects. I am also afraid of sharing information about Herceptin Side effects with her as she may completely reject this idea.

Is Herceptin is the only way out at this time to control the growth?

Thanks you all in advance.
Manish Mittal (Husband of Dimple)
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Old 08-09-2012, 05:57 AM   #2
tricia keegan
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Re: Metastatis Breast Cancer - Herceptin required

Hi and welcome,

I personally found any side effects to be fairly minimal for me, as you may know its a targeted therapy rather than a chemo so far easier to tolerate and I believe I would'nt be still here today seven years on had I had not had this wonderful drug.

I'm sure others can make more suggestions for you and I wish you and your wife luck in making this decision.
__________________
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 08-09-2012, 05:57 AM   #3
KDR
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Re: Metastatis Breast Cancer - Herceptin required

Hi, Manish,
Welcome, yet sorry you had to find us.
I'm not a doctor, so I won't comment on her treatment, but it seems as if there's a good plan in place.
Herceptin is not a hard drug to take at all. There are some side effects, but they are "doable." Wondering, since Dimple was diagnosed as metastatic, she might be right on to (Pertuzumab) Perjeta with Herceptin. Anyway, wishing you well along this journey, and will add there are many new and exciting drugs and strategies to fend off this diagnosis. I have heard that being triple positive HER2 garners a very good result.
Karen
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World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 08-09-2012, 07:19 PM   #4
Mtngrl
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Re: Metastatis Breast Cancer - Herceptin required

It's wise of Karen to refrain from second guessing the doctors. I will add that I, too, have no great problems with Herceptin. I hardly notice it. I'm a little tired the rest of the day after an infusion, and that's it.

Sorry you needed to join us, but welcome to the "club."
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_____________________________
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 08-09-2012, 09:02 PM   #5
Bunty
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Re: Metastatis Breast Cancer - Herceptin required

Hi Manish,

sorry you and Dimple are having to go through this. I would also like to let you know that I'm now taking Herceptin for 4 1/2 years every 3 weeks, and I find it very tolerable. I had an infusion yesterday, and was out shopping right afterwards, and then dinner out with friends (with some wine too!) And today, have been out walking, doing errands. Only thing today is a slightly drippy nose, which is a side effect for some. Herceptin is regarded as one of the most important discoveries in medicine, and we with Her2+ disease are "lucky" to have it. Doesn't work for all, but it's certainly worth including I think. There are strict protocols for testing heart muscle function when having Herceptin, so if there is a problem, the docs will be right on to it.
Best wishes, Marie
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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Old 08-09-2012, 09:11 PM   #6
Pray
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Re: Metastatis Breast Cancer - Herceptin required

Manish, Hi

I too am so sorry you had join here. please know that you and your wife are in my prayers. Gods blessings to you both.

Peace
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dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 08-09-2012, 09:38 PM   #7
Paty
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Re: Metastatis Breast Cancer - Herceptin required

Manish,

You have come to the right board. There are many women in this board who are very well informed and that have travelled the rough way of Breast Cancer, we are all her2 breast cancer survivors and have experienced different tratments according to each one circumstances and characteristics of each one illness.

In my own experience with Herceptin, I can tell you that Herceptin was a stroll in the park in comparison with chemo. I received chemo (FAC) first and then Herceptin with almost no side effects, except from a little bit of a runny nose and some joint pain. My oncologist would order some studies with the cardiologist (heart eject fraction) every 3 moths, but that was about it, they always came out normal. My Herceptin infusions were every three weeks, no side effects then, and no post effects after that.

I understand your fear after reading so much in the internet, same happened to me. What I can tell you is that you should be confident of this drug, it has really helped many women around the world who are her2+. I understand everybody is different, but be confident. If you have a chance to see the movie LIVING PROOF, I would recommend you to see it.

Please keep us poste of how things develop and do not loose hope, there are many treatments out there that can be used. We will be looking forward to hearing from you and your wife. Best of luck.

Paty
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Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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Old 08-10-2012, 10:31 PM   #8
Manish
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Re: Metastatis Breast Cancer - Herceptin required

Hi,
I would like to thank you all for sharing your experiences with us. This does help us both to go ahead with herceptin. Dimple will have her fourth cemo coming monday 13th Aug. When diagnosed of this cancer she was very dipressed, but have madeup her mind to fight it, specially after looking at our kids Daughter Tamanna [7yrs] and Yashvin [going to be 2 in sep.]. Yashvin was breast feeding when this was diagnosed.
Thank you again for your prayers and blessings.
Manish. (Husband of Dimple)
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Old 08-11-2012, 03:31 PM   #9
Jean
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Re: Metastatis Breast Cancer - Herceptin required

Manish and Dimple,
Just wanted to reach out to both of you and wish you all the best for a smooth treatment. As many have noted before me the Herceptin part of the treatment is not very harsh and I am certain your dr.'s will be watching over Dimple making sure all continue to go smoothly.

It is not easy having treatment and small children.
I know there are some support groups who will come in and do the housekeeping while she is on treatment.
Take the help....and let others do so also. I worked during my treatment but I did take Mondays off so that
on Sat. /Sun I could relax and catch my breath.

All good wishes,
Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 08-11-2012, 03:36 PM   #10
tricia keegan
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Re: Metastatis Breast Cancer - Herceptin required

I'm so pleased Dimple will have Herceptin and especially with young children, this will give her every chance to beat this!
__________________
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 08-12-2012, 12:21 PM   #11
Rolepaul
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Re: Metastatis Breast Cancer - Herceptin required

As said by many, Herceptin via IV is not risk free, but the risks for the most part are with the heart. If they do a MUGA (which measures heart ejection volume versus the heart chamber volume) and she has acceptable results, the risks are almost none. Have them look at running an allergy test, although this is a problem in almost no patients. As someone that helped with the initial Monoclonal Antibody development work in the mid 1980s, and staying in the flow of things since then, these are the only two issues I know of. Being concerned because she weighs 45 kg is valiv, but the other chemos are more likely to give issue. Triple positive is good as it responds to all the drugs versus only having a single option for success.
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Old 08-13-2012, 04:48 AM   #12
sarah
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Re: Metastatis Breast Cancer - Herceptin required

Dar Manish and Dimple,
I did Herceptin for 6 years and didn't have any side effects. They will check her heart function every 3 months which is the only side effect that can be serious but only for a few people. personally I had no ill effects from Herceptin, drove myself to the hospital (an hour away) for the 6 years and honestly was grateful to be getting it - I considered it my life insurance. I actually begged my oncologist to keep me on it an extra year! Chemo is tougher but necessary and radiation can have some nasty side effects down the line but also necessary. If her doctor thinks she should get it, I would advise her to follow his instructions, it just may save her life. I believe in doing more not less, it's a vicious, tricky, nasty disease that must be fought with a nuclear bomb. She's young and therefore it is aggressive, she sounds like she has good doctors but if you're ever concerned, seek another opinion and read up about it. Being surrounded by a caring family and friends is an asset as is a positive attitude. She will be very tired but that's normal. You can beat it but it's a big fight.Check out on this site about supplements also. many cannot be taken while doing treatment but some can. Tumeric/curcurmin is a big one but there are others that are recommended. Also if she does Herceptin, Co-enzyme Q10 is advised but check this out yourself and with your doctor.
Being a caregiver is a tough job, learn to get away with friends sometimes and find someone you can talk to when it all gets to be too much.
Health and happiness
hugs and love
sarah
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Old 08-14-2012, 06:06 AM   #13
pibikay
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Re: Metastatis Breast Cancer - Herceptin required

This is the right place for help.For Her2+ Herceptin is the best.Side efects are not much compared to taxol taxotrene etcAfter 9 courses of herceptin Hema was put on Tykerb Xeloda regime.Herceptin is essential
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huband of Hema
Metstatic Breast Cancer Stage 4
Left breast cauliflower 25x20cm
ossousmetstatis in vertbrae secondaries L4=L5secondary
nodules in both liver lobes secondary
Diagnosed 10th March 2010
ER/PR-ve
Her 2 neu +++
Taxotrne Zylotec started 16th March
Herceptin added 5th April.9th Herceptin over on 20th Sep '10.Started on Tykerb and Xeloda on 22nd Oct2010TYKERB 4 TAB A DAY XELODA 4 TAB A DAY ONE WEEK ON ONE WEEK OFFZoletrust infusion every 4 months.Lesion in Brain 3D CRT Radiation started on 1st Feb'12 for 20 days ,5 days a week for 4 weeks.Devloped a small lump in breast.Xeloda stopped from 11th April '12.On Taxol.After 3 cycles of Taxol Taxol stopped.Back to Xeloda regime from 3rd July
Herceptin started again on 27th Dec 2012.Xeloda stopped Navelbin added on 7th February 2013.Now on Tykerb Herceptin and Navelbin
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Old 08-14-2012, 11:33 AM   #14
Cathya
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Re: Metastatis Breast Cancer - Herceptin required

Manish;

I am so sorry to hear of Dimples diagnosis. I did have problems with herceptin and ended up having to come off the drug without doing a full year as my Muga scored dropped. I did not have any other side effects and found herceptin to be much, much easier than chemo as the others have said. Having said I came off herceptin early though you will see in a recent post posted by Lani that recent research has proven that even a brief time taking herceptin has very positive results. I do think that Dimples being ER/PR+ is another positive for her. My very best wishes for you both and please keep us informed of her progress. I have no doubt if you search the site for more information you will find a treasure trove which might give you some comfort.

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 08-14-2012, 01:58 PM   #15
CoolBreeze
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Re: Metastatis Breast Cancer - Herceptin required

I don't know what weighing 45 means - can't be pounds. But, I weigh 95 pounds and I have done herceptin for 3 years. No side effects.
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08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 08-15-2012, 10:26 AM   #16
Jackie07
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Re: Metastatis Breast Cancer - Herceptin required

I'm guessing it's 45kg = 99 lb
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NICU 4.4 LB
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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
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Irrtbl bowel 1'09
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Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
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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.
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Old 08-16-2012, 12:25 AM   #17
Adriana Mangus
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Location: California
Posts: 668
Re: Metastatis Breast Cancer - Herceptin required

Hi Bunty,

Glad to hear you are on the club--the wine club that is.

Some of my friends are always reminding me about wine and how bad is for my body. I tell them if it was bad, God wouldn't have ever created it, even my doctor has given me permission to drink--on moderation. I must admit sometimes I do get carried away, ops...

Love,

Adriana
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1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 08-16-2012, 12:26 AM   #18
Adriana Mangus
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Location: California
Posts: 668
Re: Metastatis Breast Cancer - Herceptin required

Hi Jackie,

I was wondering the same, Jackie, about 100 pounds.


Love,


Adriana
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 08-17-2012, 02:58 PM   #19
Manish
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Join Date: Aug 2012
Posts: 5
Thumbs up Re: Metastatis Breast Cancer - Herceptin required

Hi,
Just an update on Dimples health. She underwent her fourth cemo cycle. We were planning to be together early next month after my daughters school vacation in sep. We are based in Dubai and right now Dimple is in India. But Dimple is not feeling well and have decided to stay back till all her eight cemo are over. I will be joining her this month end for her first dose of herceptin scheduled for Sep 4. Praying that everything goes well. Yes she was 45 kg, but have lost some more weight.
Also can anyone suggest on how to increase hemoglobin naturally.
Thanks. Manish
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Old 08-18-2012, 12:14 PM   #20
Alycen
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Join Date: Aug 2012
Location: Kansas
Posts: 2
Re: Metastatis Breast Cancer - Herceptin required

Hello, I am new to this message board as well. I too am Triple Positive. When 1st diagnosed in March 2012, went right into chemo...Carboplatin, Taxotere and Herceptin, once every 3 weeks. My 4+ cm breast tumor, having completed my chemo...is not UNDETECTABLE. By physical exam and by sonogram. Herceptin will continue once every 3 weeks until next March. Surgery at the end of the month...a lumpectomy now instead of a mastectomy. 30 days later, will start 30 days of radiation. M-F for 6 weeks. Dropped all sugar from our diet, home cooked meals, no processed foods, also working with a nutrionist. Dropped 20 pounds and the tumor can't be found so I'm good with it!
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Alyce Newell, Kansas
+++ Positive, 3/2012, breast cancer, chemo of Carboplatin, Taxotere & Herceptin once every 3 weeks. Nearly 2" tumor now UNdetectable. Starting Herceptin once every 3 weeks on 8/20/2012 until next March. When they talked surgery in March, it was nothing but a mastectomy. Now surgery will be a Lumpectomy August 2012, followed up with 30 radiation treatments. Surgery complete, waiting on pathology report from remains of tumor and 2 nodes that they removed.
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