Re: Calling all stage iv sisters
 

I was diagnosed May 2015, Stage IV from the outset with a few small spots on my liver. I had a large (6cm) tumor on my right breast and a bunch of hot lymph nodes in my right arm. Started THP in June 2015, scans in August 2015 showed all cancer activity had resolved. Started H&P every 3 weeks in October 2015, just had tumor markers in February 2016 - all normal. Onc says no scans for 3-6 months. I feel pretty good, work full time (stressful right now), run first thing in the morning every day. I drink no alcohol the week of treatment, but I drink two glasses of red wine the two weeks between treatment!

I had lymphedema in my right arm as a symptom of breast cancer, and see a lymphedema PT every week. It is well controlled.

HER2+++, ERneg, PR < 5% (negative for all intents and purposes). I choose to believe that there are so many treatments for HER2+, and so many in the pipeline (including vaccines), that we can manage this as a chronic disease rather than a terminal one.

Re: Calling all stage iv sisters
 

KaiM, wonderful news that you are doing so well. You must live in awe of those little lives you helped create and influence. What a beautiful, inspired way to live. I am certain you have a special appreciation of each day. Keep living!

Re: Calling all stage iv sisters
 

Scrunch, no AI for you even with a little bit of PR+?

Re: Calling all stage iv sisters
 

Hey MaineR - No AI for me. I have had a great response to the HER2 treatments. Honestly, they don't know what to do with PR+. lol - I was going to say that there is one lonely thread on BCO for folks HER2+ ER- PR+, but I see you are already there! Let's keep in touch. The NIH is considering me for a clinical trial - NCT01730118 - but to do so they must re-test my saved biopsy samples. I am very interested to see what they say about it.

Re: Calling all stage iv sisters
 

Just saw this posting through an old friend's FB (can't remember if I'd invited this friend of friend's to this forum):

"So my poor city of n b has had a rough week....well I am ready to start turning some frowns upside down....this week I had scans to see where I am at with the cancer...well the results r in....the cancer that was on my bones is inactive....it is causing pain because it is scarring on the bone and will take years to heal....the liver met is GONE....the tumor in my breast is the same size....so what is the plan u may ask?!?! We r going to move forward with the lumpectomy to remove the tumor and will probably get radiation after the lumpectomy...after the lumpectomy I will officially be CANCER FREE!!!! What?!?! YES you are reading correctly and not going crazy...I said it CANCER FREE!!!! Shut the front door people?!?! Are you kidding me!!!!! I am just in complete shock and right now disbelief!!! You have answered my prayers!!! He is not ready for me!!!! Don't get me wrong I still have to deal with cancer for the rest of my life....I have to take a hormone pill everyday and have an intravenous infusion of herceptin every three weeks FOREVER!!! And herceptin is not cheap...$25,000 per infusion!! �� I will b getting scanned every three months for the first year and then every six months after that....then after a year of being free of this crapola I will hopefully get my double mastectomy with reconstruction...OMG!!!! Shut up!!!! I just can't believe it...damn people I am good!!! Hahaha jk!!! I know that I will have a fear of it returning forever and I have to get treated forever but hey my forever is gonna b a lot longer!!!! ��.....you did it!!! You prayed and supported and loved me.....so right now I need to focus on a upcoming surgery...but dang that should b a piece of cake!! I need to write to you as I am just crying...I wouldn't be here without u, my friends, my family and my community, and my boys....u inspired me and gave me strength everyday......I will live each day in the moment...I will b happy and I will give back....I want to touch and inspire and help thousands or millions of people....I am and want to live....I am a mom, a daughter, a friend and hopefully one day again I will get to be a wife....I am blessed....my life I will have a lot of pain because of the scarring on my bones but that is ok bc I am living and breathing and smiling!!! �� I am just so pumped!!! Life is so precious....live for each moment...love the people you surround urself with and fight each battle with grace and dignity!!!! Holy cow....after surgery Mudge will b CANCER FREE....dang skippy I don't know how much stronger you can get!!!! Thank you for you love and support!! I am honored and blessed!!! I love you all!!!! If winning was easy losers would do it.....I told you guys I am NO LOSER!!! ������ ‪#‎mudgestrong‬"

Re: Calling all stage iv sisters
 

Jackie, I'm thinking of you and hoping you have a positive outcome from all of this. I hope you will keep us all posted on your status. We care about you and want you to have the very best.
Debbie

Re: Calling all stage iv sisters
 

Thanks, Debbie.

Have some good news to share...

Didn't receive anything from the hospital for about 10 days (was told it would take five days to get the result and there was a President's Day long weekend in between), so I sent a message to my breast cancer oncologist. (The biopsy was ordered by the GI surgeon after my oncologist had sent me to her for a consult following the ultrasound and CT ordered by the nurse practitioner at the branch clinic near FIL's house). Below is the reply from the oncology nurse (I did make an appointment with the GI surgeon and will see her on the 29th. "An appendectomy and biopsy of the swollen lymph nodes near by will give us a definitive answer to the appendix problem," according to her during our last visit. Has anyone ever hoped/preferred to be diagnosed with an appendicitis? :)

Received:

2/23/2016 11:52 AM CST
Hi , Dear
Dr S. said to tell you the biopsy is OK, there is no cancer in your liver. No need for chemo.
It would be a good idea to call or send a message to your surgeon and see about the appendix.
Let me know if you have any questions. Thank you, C.

----- Message -----
From:
Sent: 2/22/2016 11:29 PM CST
To: S., MD
Subject: Test Results Question

Hi,

Have you heard anything from my liver biopsy that was done on the 12th? I am pretty sure I have appendicitis and breast cancer metastasis to the liver. Wondered if I needed to take the appendix off before chemo or wait till after the treatment.

Thanks for taking your time to read this. See you on March 4th.

Re: Calling all stage iv sisters
 

Jackie,
Appendicitis!!! Praise the Lord! That's great news!!
Diana

Re: Calling all stage iv sisters
 

Awesome news Jackie! Makes me smile :-)

Re: Calling all stage iv sisters
 

O oh ...

Went to the Patient Information porter of the Hospital website and saw 'liver cancer' on the list of all my ailments. Guess what the biopsy found was not a metastasis, but primary liver cancer! I imagine the result of the appendix surgery is going to be the same (primary appendiceal cancer). The oncology surgeon is going on vacation for two weeks. She's going to see me again Monday and probably will get another surgeon to remove/biopsy the appendix for me. The brain specialist who's going to review my anuual MRI Friday [taken before noon] afternoon refused to move the appointment, so the (this past) Wednesday surgery plan she had had in mind fell through.

I finally realized the urgency... On the hospital patient chart site there's a 'liver cancer' on my list now. Guess it's a primary liver cancer. I think the two new cancer probably were caused by the flea poison exposure last spring. (SIL put 10 times the recommended dose on the drive way and patio before she'd left FIL's house. When we arrived a couple of hours later, a mother cat and two babies were dead by the ramp in front of the entrance of the house, lying right by the poisonous powders! I spent about half an hour to dispose all the poison and ended up lying in bed the whole next week.

People who have the desire to 'kill' are having issues inside ... Somehow I've always had the [bad] luck to be around them...

Re: Calling all stage iv sisters
 

So sorry to read this. Hugs and prayers.

Re: Calling all stage iv sisters
 

Oh damn! That just turned my earlier smile upside down :-(. I am thinking of you as are many on this board. Please keep us posted on how you are doing.

Re: Calling all stage iv sisters
 

Jackie, I don't even know what to say, sorry is inadequate. I hope the chart entry is wrong.

Re: Calling all stage iv sisters
 

Brought it up to the young medical oncologist, and he vehemently denied that I had liver cancer (secondary to ...). "It's some kind of allergic reaction," he explained. So the 'liver cancer' entry must have been put on the neurosurgery chart by mistake.

Was supposed to have surgery last Wednesday, but was cancelled because the following Friday's brain MRI and appointment with the neurosurgeon couldn't be rescheduled. A young resident doctor explained to me that if cancer is found at the tip of the appendix, then the procedure will be simply removing the appendix. However, if cancer is found at the base attached to the colon, then another surgery will be arranged within four, five days to remove part of the colon.

The lady surgeon who's highly specialized in GI oncology surgery just left for her 3-week vacation, so another GI surgeon will see me tomorrow at 1 pm to arrange for the surgery.

Did not cancel the 11:30 am consultation appointment with the director of the GI Department as I do like to get his input. (Such as whether or not there's any other GI stuff that I can go ahead remove ... :)

Steamed some left-over take-outs and ate a good meal tonight. You'all have no idea how long I've been eating oatmeal (with a lot of fruit and yogurt) for breakfast/lunch/midnight snack. (I've been having bowel problems for quite a while now.) Hopefully the good eating habit of the past few years will pay off.

Thanks again for all your support. All my (5）siblings have been informed of my situation now, and Oldest Sis will be accompanied by her daughter to visit me from June 6 to June 11. 2nd Sis will be attending wedding of one of her husband's nieces in New Jersey late May and will join all of us June 6 as well. Then they will be flying back to Taiwan together. Haven't seen them since 1998 (forgot that 2nd Sis had stayed with me for a month after my mastectomy in 2007) ...

Re: Calling all stage iv sisters
 

Hope you enjoyed the take out Jackie! So sorry you are dealing with all of this - especially after all you have been through. Many hugs and prayers

Re: Calling all stage iv sisters
 

Believe it or not, I'd had my appendix out Friday already!

The appointment with Dr. Thomas on Wednesday went well (Partly because the GI Director had told us that he's a fine doctor) until at the end when he said that he's going on vacation for 3 weeks as well!

I couldn't hide my disappointment and just 'lashed out' (more like 'begged' :). Then he said he could try to do it Friday when he'd already had two surgeries scheduled that morning. We then went to the admission counter to complete the paper work and paid $100.00 copay for staying two days after outpatient surgery. If I am admitted to the hospital after 48 hours, the lady explained, it will be $450.

Thursday we received a call stating that the report time was changed from 9:30 to 8:00 am. I was so tired trying to clean up the house/finish the laundry that I went to bed right after taking the Exemestane at 7:30. Woke up around 2 am and took shower after watching a little bit TV. Been drinking Gaterade since noon the previous day after taking 4 bisacadyl to clean up the bowel. I was tired and hungry and ready to 'go'!

Turned out the earlier report time was to take care of business at the Admission counter. The lady asked me for a driver's license! (In the hospital where I'd had five prior surgeries!) And she did not like the long expired license I presented her ... (The neuropsychologist who'd done extensive testing on me in 2008~2009 advised me not to drive after I'd flunked the ‘driving test’ administered by her assistant. The testing was arranged after she'd learned I'd had two minor car accidents the previous year.）

Anyhow, I lied down on the cold surgical bed and was very glad the lady there was able to start my IV with just one poke (on the all bruised and beat-up left arm). The surgery started around 12, according to hubby, and he met with the surgeon at the corridor outside OR after the surgeon called him on his cell phone around 2. Everything went well, according to the doctor. There was a lot of puss. Visually he did not see any sign of cancer. And the lab report was also benign. But we will have to wait five days for the final determination...

We were exhausted yet excited driving back to FIL's house. And there was a hot meal on the talbe! SIL had instructed her youngest daughter who lives nearby to cook something for us ...

ps. The surgeon has returned from his one week vacation (glad it's not '3' weeks) and reviewed my pathology report quickly ('never put off tomorrow what you can do today'! :). So I got the surprise call from his nurse this afternoon (instead of the projected 'tomorrow')： All's clear! No cancer found in the the specimen of the appendix. Nor was the spots in the liver (just had to get another confirmation as 'liver cancer' was noted on 'my chart', the electronic patient information site.). But be sure to do the 5-year colonoscopy next year...

Re: Calling all stage iv sisters
 

So glad you had the surgery and everything went so well!! YAY!!

Carol Ann

Re: Calling all stage iv sisters
 

Good to hear Jackie07! Now on to healing and positive thoughts!

Re: Calling all stage iv sisters
 

In general or physically I am doing well. I have a scan next tuesday, ct with contrast. Previously I always had pet scans so this is a new first. I understand the radiation exposure is less but I feel like what's the big deal? I am stage IV, how can it get any worse? Just feeling like I am so "over this"! It's into year three and I read other peoples' posts of ten years of herceptin, that's a minimum of 180 doctor appointments, a minimum of $8,000,000 in treatment not including inflation or increased drug costs or other medical needs; just targeted treatment and I think what for? Why? Is it all worth it?

Re: Calling all stage iv sisters
 

Thanks, Carol Ann and Colleen.

Took just one dose of pain pills today. (Not that I didn't feel any pain during later half of the day) Felt good enough to cook a bundt cake with spice cake mix plus one can of apple pie fillings, one cup of apple, one cup of raisins, one cup of walnuts and 1/4 cup of water. Turned out O.K. even though I couldn't remember the exact temperature setting!

Now that's a philosophical question Colleen has here. Why are we here? What's our purpose in life? Where does all these lead to ...

Everyone, (breast) cancer patient or not, asks these questions during certain stages in his/her life. Teenagers especially struggle with these while they are heading toward the 'unknown' adulthood.

I had the good fortune to have met the late Fr. Robert Ronald, SJ. just before I left for the U.S. to further my study in Library Science. He went to Taiwan in his mid 20s as a missionary and contracted polio during the epidemic. He went back to California to get treatment and returned to Taiwan in a wheelchair. There was no vocational rehabilitation for polio patients in Taiwan back then, so he returned to the States and received a master's degree in vocational rehabilitation. He worked as a vocational rehabilitation consultant in the General VA Hospital in Taipei and was buried in Taiwan when he passed in his mid 70's. (A 'Consultant' means he's not entitled to any employee benefit ...)

When I was in the wheel chair during rehab following a 23-hour brain (tumor) surgery (in 1990), I recalled the words in Fr. Ronald's book of collected speeches from his lecture tour arranged by the Social Welfare Bureau in Taipei: "Even if you can not move your limbs, you can find something interesting to think about."

"There are always people in far worse shape than us. The dignity of being a human being does not diminish a bit due to our disability."

I always thought it was not a coincidence that I had met Fr. Bob right before starting my adventure in a 'foreign land'. We all get depressed sometimes. And that's why we are here - to support each other.

Sending you good vibes.

ps. CT is a lot cheaper than PET and can pick up much smaller stuff than PET. That's just my guess.

Re: Calling all stage iv sisters
 

Jackie,

Love your post! Certainly a great way to look at our purpose in life. I do believe we are here to help each other.

Take care,
Brenda

Re: Calling all stage iv sisters
 

Just coming up for 8 years since original DX (Multifocal ER+ PR- HER2+) and now Oligometastic with single met to Liver just found on PET/MRI

Have to decide whether Resection of Liver or biopsy & RFA w/Chemo is the choice. Not an enviable one.

Does anyone have experience of this and any suggestions / advice?

Thank you

Re: Calling all stage iv sisters
 

I can radio frequency ablation ro a single liver met and have been ned for almost 3 years..it was easy...

Re: Calling all stage iv sisters
 

WOW EMY, GOOD TO KNOW. Hope it's available everywhere. Example , Some
places do lumectomy, and radiate the breast at the same time, called I ort I think.
Wasn't available at my hospital. Would have to go to cleveland clinic orCancer treatment
center in Philly. Had to do the 30 day thing.

Re: Calling all stage iv sisters
 

Emy - I had a resection to remove 2 mets in Feb. 2005. Did chemo prior to surgery. Have been NED since. It wasn't as bad as I had anticipated. Best wishes!

Re: Calling all stage iv sisters
 

As an update - had the Liver resection in Jan 17. Then onto maintenance TDM1 ever since. Year and a half on still NED. Doing the Healthy Healthy Healthy eating without fail.

Re: Calling all stage iv sisters
 

Glad to hear that you you've had a good result! I used local procedures as well, but in the lung.

Re: Calling all stage iv sisters
 

Stage 4, MBC bone liver and maybe lung. All was gone at end of Chemo NEAD since 2013 ( diag. 8/2012) still on herceptin , zometa and anatrosal. Life is good. wish some of the new adds would realize how a patient might feel based on their comments. they see positive I see negative...

Re: Calling all stage iv sisters
 

This is wonderful. Thank you so much everyone. I'm one of the newbies. I started at Stage 4

Re: Calling all stage iv sisters
 

It’s been 5 years since my stage IV denovo dx’d. It’s been quite a journey and not always easy, but I am still here, still receiving herceptin and perjeta every 21 days. There is no end in sight as far as treatment goes, 82 treatments over 5 years! Guess we stage IV thrivers are also multi million dollar metavivors! I wouldn’t be here if it wasn’t for western medicine, brilliant doctors and scientists who can discover and design drugs that keep us alive. Full of gratitude 🙏🏼