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Old 05-26-2012, 06:32 AM   #1
Bunty
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Dating when Stage IV

I've been thinking for a while whether I should put a dilemma I have to this wise group on the HER 2 forum. I'm hoping no one is offended and sees it as trivial, and if so, please excuse me.

Shortly before I was diagnosed with Stage IV mets (about 4.5 years ago), I had ended a fairly long relationship. Of course, I had lots on my plate at this time, so dating wasn't high on the agenda. Thankfully my disease stabilised, so I dipped my toe back in the dating game about 2 years ago, but 'chickened' out after about a month when I was getting to the stage of trying to describe my situation, yet, keep it light (not too many details, and definitely no mention of Stage IV and what that means!). Part of me would have liked not to have broached the subject early in the dating life cycle, but having quite an obvious port, it was hard not to provide some kind of explanation, not to mention the scar and deep divot on my left breast from my lumpectomy (at some point I was hoping that my date might see below my neck!) So with advice from friends, I decided that it was probably best to make mention of 'it' after about the second date if I thought there might be potential with the guy. But I found the fear of rejection because of cancer too confronting, so I shut up shop, until now that is. A year ago, I had a further recurrence, and lost my hair (again!), and set myself the goal that once my hair grew back (on my head - wouldn't have minded the legs staying hair free), I would dip my toe in again. So today, I updated my online dating profile, added some lovely pics with my new short hair, but haven't activated it yet. I was hoping for some input, particularly from women who are stage IV, on how to 'prepare' someone who probably hasn't much idea about cancer, except for the very sad Hollywood version.

I know I'm a survivor, and despite my liver mets last year, actually feel more optimistic than I did after the original Stage IV diagnosis, so the fear of rejection is not as strong (cue Gloria Gaynor "I Will Survive").

I have wonderful friends and family, and am quite independent and happy in my own space, however, I do miss the intimacy of a special relationship, both mentally and physically.

I feel very well, and am quite healthy and fit, in fact much 'weller' than many other people I work with and know, so on the surface I look pretty normal (whatever that is really!)

So really I was hoping for thoughts on when and how to make mention of my cancer status to someone I might date. Sorry for the long winded post.

Cheers 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 05-26-2012, 10:15 AM   #2
BonnieR
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Re: Dating when Stage IV

Good on you for wanting to get back in the pool! I am absolutly no help in this regard but I recall prior discussions of this topic so I am sure others will have suggestions for you.
I just wanted to show support. Keep the faith.
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Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 05-26-2012, 12:21 PM   #3
Paty
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Re: Dating when Stage IV

Dear Marie,

When we go trough a experience like BC, we learn that living fully is what we need to do for the time that God lends us in this earth, so do not be afraid! live your life to the fullest, whoever will want to be with you will do no matter what. Go for what you want and enjoy it!
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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 05-26-2012, 12:46 PM   #4
Jeanette
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Red face Re: Dating when Stage IV

Go for it Marie, if it is someone who really cares they will see past any issues with your health and see you for the beautiful person you are, Blessings, Jeanette
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Old 05-26-2012, 03:09 PM   #5
Lien
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Re: Dating when Stage IV

None of us, whether we have cancer of any stage or not, know when we will die. We all start relationships when we are ready to let someone into our lives, close to our hearts. So when you feel ready, go for it!

As for when to broach the subject: I think on the second date. If the other person cannot handle your diagnosis, they cannot handle you. They don't deserve you.

When I met my husband he said on the first date: I have two children that I rarely get to see. They come first and their mother is the best mother in the world. If you want to be with me, you will have to be able to accept that.

You know what I felt? I immediately knew I could trust this man, because he was honest about his priorities and about his love for his children. If I hadn't been able to handle the kids and the ex, our relationship would have had no future. I respected his honesty.

What I'm trying to say is, that something that may be totally unacceptable to one person, can be (more than) okay for someone else.

Even if you find that someone cannot deal with your being Stage IV, it's better to know it as soon as possible.

I wish you a loving relationship with someone worthy of you.

Love

Jacqueline
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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 05-26-2012, 03:13 PM   #6
Mtngrl
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Re: Dating when Stage IV

Marie, I'm glad you brought it up. You are beautiful, vibrant, and full of life. I'm happy for you that you feel up to looking for a special love relationship. Maybe someday I will follow suit.

I'm also very interested in what other members say in response to your question. When I date I tend to take it very slowly, so for me the second date would be far too soon to talk about my cancer. I'd still be trying to assess how much to tell the guy about anything, much less that.

Years ago, on a first date, I was wearing two wrist bands, a white one and a yellow one (from Livestrong.) My date asked about them. I said the white one is for the ONE campaign, to get Congress to allocate an additional one percent to ending extreme poverty in the world. I said I wore the yellow one because I was a bicyclist and cancer survivor. He asked what kind of cancer and I said melanoma. I noticed a brief look of sadness on his face.

We went on to talk about other things. He was a widower. I eventually asked how his wife had died. He said "melanoma."

The dating didn't really go anywhere, but he and I are friends. He's been very supportive since my breast cancer diagnosis. Interestingly, he did not remember our conversation about melanoma, although he remembered other details of that first date.
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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 05-26-2012, 05:50 PM   #7
Jackie07
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Re: Dating when Stage IV

Marie,

Since you've stated "I feel very well, and am quite healthy and fit, in fact much 'weller' than many other people I work with and know, so on the surface I look pretty normal...," there's no reason why you need to be (worried about) disclosing your health status.

Just be 'normal', be yourself, and have a good time! I was talking non-stop on the first date with my husband because I was upset over something/somebody and he looked/acted like a good listener. He didn't ask me out again until a couple of months later...

I believe it wasn't until we were going 'steady' before we shared our 'medical history'. None of what we knew/shared back then would predict I'd have a brain tumor surgery two years after our wedding; he'd have heart surgery in another 15 years; and I'd have GKRS for brain tumor recurrence plus two breast cancer surgeries/treatment before our 20th Anniversary...

Just like the stock broker's fine print - "Past performance does not guarantee future profit" - nobody can predict the future. So seize the day and enjoy what life has to offer!
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Last edited by Jackie07; 05-26-2012 at 07:04 PM..
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Old 05-26-2012, 08:52 PM   #8
Bunty
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Re: Dating when Stage IV

Thanks everyone for your votes of confidence, and encouragement. Thanks for reminding me to live life to the full - gee if we can handle living with cancer we can handle just about anything!

Jacqueline, I think you are absolutely right about honesty - I just wonder how much information should I share? I think you are all saying just be myself.... this is who I am..... (the rich tapestry of life etc!)

I was just reflecting now about when I took on the job I have now in an advertising agency about 2 years ago. I had previous dealings with this company in another 'life', so the management knew I had gone through BC. However, I needed the job back then, so was not fully comprehensive about my stage IV status. As it turns out, I have become a valuable member of staff, and they couldn't be more caring and understanding, particularly following the liver mets diagnosis. I think I showed them that life goes on, and I never missed a day at work related to my treatment. Mind you, just 3 months after I commenced, I had a major motorcycle accident which put me in hospital for two months, and out of work for 3, and it all turned out for the best as they moved me into another section which I love. So what I'm getting at is that I need to take the lessons at this workplace with me now as I consider going down the dating path.

But I'm really enjoying everyone's thoughts so would love to read other's perspectives too!

Cheers 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 05-26-2012, 10:20 PM   #9
SoCalGal
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Re: Dating when Stage IV

I'm an expert on that subject. Well, maybe not an expert but will share what I said to my man about my disease (about a year and a half ago).

I did not talk about it right away, we had gone on a handful of dates, which included physical activity like a hike, we'd gone out dancing, so he saw me as "normal and healthy" because I am.

When the time came to become more intimate, I spoke with him along these lines: "I want to share something with you...I am a 16 year survivor of breast cancer. I am 4+ years stage 4 and I view my illness as chronic - it's something I manage. I am only bringing this up because some of my body parts are re-arranged and I would not want you to be shocked. I am very comfortable with my body and self. I know it's a lot to take in right now, so as you have questions feel free to talk to me about things at any time." He asked me a couple of body part questions (guys are guys) and we continued in our relationship. As time went on, I would share more of cancer world with him, and after several months I asked him to come to treatment with me. I will say that it helps that we are both over 50. I think that a certain maturity sets in for everyone when you reach the big 5-0.

This helped me, too:
A very close friend of mine (male) said to me when I was starting to date, Look, you're going to date a lot of men in your life. Some men will be okay with your illness, some will not. It's not personal. The ones who are not okay with it are not for you. It's the same as with your kids. Some men will feel that your kids are no big deal, others will not be okay with it. THAT put things into perspective for me and allowed me to be very matter of fact in my discussion of cancer. It was something in my life - take it and me or leave it and me! It allowed me to be very matter of fact and straightforward in my approach.

I don't think you have to tell too much at first. DAting is a process. Why share your personal medical info when you are just getting to know someone. It is so nice to be a woman and not a cancer patient. And it is nice for the man to see you for you and not some cancer girl.

If someone asks what your port is, you can say it's a long story and you'll tell them at another time. If they cannot respect that, then they are not the right man for you, wouldn't you say?

Hope this helps you!
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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.
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APRIL 2016 - 9 YRS MBC
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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
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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.
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Old 05-27-2012, 10:37 AM   #10
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I think some excellent suggestions were shared here.
I have one more. First dates don't need explanations, because first dates should be casual meetings anyway.
Wear a pink breast cancer bracelet on the second date and see if that inspires the date to ask questions. Don't share too many details immediately if the date asks about the bracelet. Just say casually " I am a a breast cancer survivor" or something similiar.
If the date asks for another meeting more details can be shared on a need to know basis during each date.
Too many intimate details can be overwhelming for anyone in the beginning.
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Old 05-27-2012, 11:14 AM   #11
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Re: Dating when Stage IV

Just thought about something else that might be related:

Do we share the story of our past relationships on our first date?

De we share the spiritual/romantic/emotional scars on our first date?

Besides the urge to tell people about our traumatic experiences in life, do we have other urges that should be the priority to share on the first date?

Do we want to present ourselves as someone that's not the true us?

Is dating just a game, a carefully crafted 'first impression' and continued facade...

[Now you know why my husband had waited almost 2 months before he asked me out again... ]

ps. By the way, I love SoCalGal's " it's a long story and you'll tell them at another time" approach.
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Old 05-27-2012, 03:47 PM   #12
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No. I don't share those things on the first date. The first date should be about having fun and sharing some time together. Dinner, a movie, a concert, coffee and snacks, or a walk in the park enjoying the scenery together are all good for first dates. If the two people enjoy time together doing wholesome activities like above then they can decide if they want to see each other again. The more personal information should come later and gradually they slowly get to know more about each other. I do not want to know everything about a man on the first date either. I only want to know that he is single, his approximate age, employed or retired with an income, he is a non smoker, he is honest, clean and a decent human being on the first date.
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Old 05-27-2012, 06:25 PM   #13
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Re: Dating when Stage IV

From someone of the other gender, I can tell you that the same rules for dating apply for stage 4 as for every other type! Men and women are going always get together, just find the man (or men) that fit your needs. Think of breast cancer survivor as making you a stronger person mentally, a lot of us like women like that.
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Old 05-27-2012, 08:53 PM   #14
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Well said RolePaul !!
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Old 05-28-2012, 03:42 AM   #15
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Re: Dating when Stage IV

I love all your responses! It just shows how rich a life you have all lived! And great to have the male perspective Rolepaul (do you happen to have a single brother in his early to mid 50's?!!)

And Jackie, I was just having a chuckle when I read your last post - I couldn't help but think of Sarah Jessica Parker from early episodes of SITC.

I will take something from all of these posts....

Thanks so much for your interest.

Cheers Marie
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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 05-28-2012, 01:42 PM   #16
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Re: Dating when Stage IV

Please let us know what happens!!!
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age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
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RECLAST infusion(ostoeporosis)
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no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
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Old 05-29-2012, 02:20 AM   #17
lshill929
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Re: Dating when Stage IV

Hi Marie, it’s really great to read that you have made up your mind to enter in the reality once again and taken a step ahead for continuing your life as normal as it was earlier.
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Old 05-29-2012, 08:24 AM   #18
Mtngrl
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Re: Dating when Stage IV

Maybe it's because we're now looking for jobs and new relationships in the same way (via the Internet), but dating has gotten to be an awful lot like applying for a job, and the first date can be hard to tell from a job interview or audition. (Maybe that's why I stopped--though being in grad school and then being diagnosed with breast cancer might also have something to do with it!)

One good thing about online dating is it's a way to meet a whole lot of people. But that's also a bad thing. It's very impersonal, so it's easy for someone to drop one person and go on to the next, often without even meeting first. It's important not to take any of that personally. But it's also important to craft one's profile and early communications with that in mind--being honest-enough without giving too much information. Finally, and most importantly, it's important to be clear in your own mind about who you are and what you want.

Dating should be fun and low key at first. One nice activity is to go to a museum or art gallery (if you both like such things). You can talk about the exhibits, which might lead naturally to conversations about other things that can help you get to know each other. I also like going to the zoo for an early date.

Love, fun and friendship are important at any stage of life. Marie, I hope you'll keep us posted about your adventures.
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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 05-29-2012, 07:08 PM   #19
CoolBreeze
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Re: Dating when Stage IV

I haven't read the responses so forgive me if I'm repeating what's been said.

Why are you dating? Is it for fun and companionship? Or is it for marriage and a deep relationship?

If it's for fun and company, I don't think you owe a casual date any deeply personal information about yourself. I believe in being honest but you are entitled to privacy. I think if you are planning on keeping it light and fun and sparkly and just an enhancement to life and not a heavy romance with marriage at the end, then I would date without telling. Because you are right, I think many men are going to run at the idea of terminal cancer, even if you don't plan on a serious relationship. Of course, I think you should tell him that you are dating for fun and companionship only and you want to keep it light and not to get serious - but you don't have to tell him why.

On the other hand, if you are hoping for marriage and a lasting commitment, then I think you have to tell pretty early on - as soon as you suspect this is the person you want by your side. Having metastatic cancer is so BIG that you can't really have a deep relationship without the other person knowing anyway.

And then, you have to be prepared for the possibility that they will back away or be angry at your not being up front. But, you can't blame them - they have a right to choose their own future. Very few would choose a future with a terminally ill person- although some do.

Rejection? Yes, that is a legitimate fear. You are between a rock and a hard place and there is really no good perfect way to handle it. I too am Stage IV and I honestly do not think I would date anybody with advanced cancer. Maybe when I was young and romantic but now that I know what it entails, no, I wouldn't. It's just too much to deal with.

But, there are people out there who fall in love and get married with cancer every day. And, there are people with cancer who go out and have cosmopolitans and dance and have sex too, and don't think about making a future. Both are okay

.
You are pretty cute in your avatar so I bet you have a lot of offers.
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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 05-29-2012, 07:16 PM   #20
Mtngrl
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Re: Dating when Stage IV

I actually brought up the subject of new relationships in my in-person Stage IV group. There were several stories of people with late-stage cancer getting married. And our facilitator had a twist on it. The husband of a woman she knew took her home from her mastectomy, dropped her bag in the foyer, walked out and never came back. He divorced her because he couldn't handle her illness. He remarried and that wife died of cancer. The first wife is fine.

I agree that it needs to be disclosed. I just wouldn't do it on a second date, but I also wouldn't lie. If my date said something like, "have you ever had cancer?" I would not evade the question.

I guess it's a "play it by ear" thing.
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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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