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Old 09-14-2015, 12:08 PM   #1
spiritualabundance
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What should I be looking for...

I received my diagnosis of triple positive on 8/20/2015, after finding an approximately 1.3cm lump on 6/6/2015. While I am patiently waiting for my surgery and then for chemo to start, what should I be looking for as far as symptoms of a spread? Anyone?

Today I have not felt well at all. Aches and pains in my arms, legs, lower back, and even in my lower belly, which is likely just my colon. I don't know if I'm getting a bug or something or if I should call the doctor.

Also, to top it off, last night I went to check in on my lump again. It was found upon my examination and then the mammogram confirmed it. It was found right on the breast wall, just above the nipple. Last night, I couldn't really find the lump as easily. It's like it moved, or got smaller, or something weird. I used all of the different positions, sitting, lying down, arm up, arm down. The lump has seemingly changed and I'm concerned because of my lack of knowledge. Did something leak out of it and it shrunk and now that is running through my body making me sick? I mean, what the heck??? Lol. This is just too weird.

Probably best to call the doctor, huh?

Any suggestions or experience would be fantastically awesome.

God Bless you all. This board is a beautiful thing, keeping me off of Google!

Thank you!
-Diane
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Old 09-14-2015, 12:27 PM   #2
spiritualabundance
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Re: What should I be looking for...

Oh, and I have a fever of 99.9 right now. This may explain my aches and pains. Hopefully I'm just over-worrying. Ugggggg
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Old 09-14-2015, 04:18 PM   #3
Lucy
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Re: What should I be looking for...

I think we've all gone through similar things. Pre-diagnosis a sharp, stabbing, debilitating headache is just a bad headache, or a migraine. Post-diagnosis a mild headache is a brain tumor we're not going to survive. Fear sets in and we automatically assume the worst about things . . . at least for a while.

I'm feeling blah today and I think it's just allergies - could that be an issue where you are? If you're concerned, definitely go to and talk to a doctor about it. It can't hurt.

I'm sorry you're having to deal with this but I'm glad you've found the site. You'll find a wealth of information here and the support of people who understand what you're going through.

Best of luck to you and feel free to ask any questions you may have about what you're going through and your treatment.
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Old 09-15-2015, 06:47 AM   #4
jra40
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Re: What should I be looking for...

Hi Diane,

Glad you found this website, there are so many of us that can help you through this journey. I was right where you are 5 years ago, found lump in right breast in October of 2010 but treatment did not start until end of December then surgery in August of 2011. I was so perplexed on why I was not starting treatment immediately, it's cancer for God's sakes!! You will have a roller coaster of emotions but trust that your medical team has a good plan for you.

You may be getting a bug, you have been through a lot recently with the diagnosis and I'm sure, many mammograms, biopsies, doctor's appointments. I felt run down and thought my cancer was spreading too. You will be okay but call your doctor when you need too, they are there to help you through the process.

As for the lump, I had a sizeable one but dense breasts so it was hard to feel at times. Focus on staying strong and positive for this journey - it is the best medicine you have to fight the battle!

Many prayers and we will be here should you need any advice down the line!

Jessica
__________________
11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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Old 09-15-2015, 12:22 PM   #5
Mtngrl
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Re: What should I be looking for...

For what it's worth, I only had a few very subtle changes to my breast prior to being diagnosed, and even though I was metastatic at diagnosis I had NO symptoms or signs of that, not even from blood tests. Normal liver function. Normal tumor markers. No pain. No lump in my breast. The CT scan showed the mets. We would not have known about them otherwise.

Try not to worry about anything until you have to. What I think that means is don't tell yourself stories about what's going on, based on limited information. Easier said than done, I know, but it's a skill you can learn.

And feel free to rant, vent, ask questions, etc. on this site. It's what we're here for.
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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 09-16-2015, 02:14 AM   #6
Tresorgh
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Re: What should I be looking for...

I think you should go to the hospital and see a doctor.








honor 6 schutzfolie
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Old 09-16-2015, 09:27 AM   #7
spiritualabundance
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Re: What should I be looking for...

Thank you for your response. A HUGE thank you to everyone who responded.

Fortunately, once again, you ladies were right. It was clearly just some sort of a 24 hour, or less, bug. I felt better after about 12 hours of decent sleep. No more fever, no more aches and pains. My lump is, well, it's my lump. What can I say. I'm attached to it. I've got an appointment to see the surgeon in a week. Cannot wait to get this ball rolling!

You ladies rock!
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Old 09-29-2015, 09:53 PM   #8
SoCalGal
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Re: What should I be looking for...

Diane,
You are on the first steps to a journey - the best advise I can offer is to learn not to panic at things (as much as possible). There is a lot that you will learn along the way - but meantime, I can tell you as a 20 year survivor, cancer is a MIND game. Meaning, you have to learn to control the fear. Cancer is your own cells that don't die as they are supposed to - it's not an invader or something that can "spill" into your system. It is hard to stay steady but it will serve you well. Try your best to stay calm and steady and focus on getting information. Worrying about signs that it has spread is a waste of your energy that you need to get well - and besides, there is no universal sign of spread - it is different for everyone and some people with stage 4 disease with no symptoms (like me). Hopefully your team will do their job and monitor you. If your oncologist has not walked you through the order and time line, that will help you know what to expect and when. The expression "knowledge is power" really applies to fighting breast cancer. Stay strong!
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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.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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