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Old 09-20-2016, 10:15 AM   #1
Colleen
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Location: Monarch Beach, CA
Posts: 88
Ever want to give in/up?

As a stage IV HER2 gal our treatment will never until we run out of options and they all stop working. I am in year three and doing well but I frequently wonder what for? My kids are grown and on with their lives. Our financial situation is challenging and the copay costs and cost of staying on my insurance plan are what teachers make in a year ( I was a school teacher). If I quit my family gets my life insurance policy, I don't have to keep 30 or so doctor appointments a year, my family will no longer have the financial burden of keeping me alive...so why continue with this insanity if you're terminal?
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*October 2013 mammogram suspicious lump right breast
*Oct. 2013 Breast MRI reveals 2.5 cm tumor right breast 6-7 nodes positive
*Nov 2, 2013 PET/CT tumor right breast, 6-7 nodes include right axilla and one above clavicle, 3.5 cm lesion on dome of liver
*Nov 4, 2013 meet oncologist: schedule port placement
*Nov 5, 2013 baseline echo 65%
*Nov 13, 2013 start THP six cycles every 21 days
*Nov 20, 2013 blood counts now coming back quickly start neulasta following next treatment, no pain and it worked!
*Jan 19, 2014 syncope, ambulance ride to hospital, cracked a tooth and chipped three, six stitches in chin, CT scan shows brain is ok but am required to follow up with neurologist.
*Jan 28, 2014 PET/CT shows great response to THP
*Jan 28, 2013 echo, all is good 60-65%
*Feb 2014 brain MRI, no missing parts and no extra parts, all clear
*Feb 27, 2014 last treatment with taxotere
*Apr 22, 2014 PET/CT shows complete pathological response to THP amen!
*Apr 22, 2013 echo 60%
*continue vitamin H and P every 21 days until...eternity?
*May 2014 emotional melt down, demand port be removed.
*May 22 2014, biopsy of original tumor rt. breast, no cancer cells in 8 tissue samples, amen
*June 2, 2014 Port removed, happy dance! Just couldn't tolerate the port any longer; it never worked properly and was extremely uncomfortable
*July 24, 2014 echo 60%
*August 28, 2014 PET/CT all clear NED
*Oct 29, 2014 echo 65%
*Feb 4, 2015 PET/CT NED!!!
*Feb 4, 2015 Echo 65-70%
*May 19, 2015 mammogram all clear
*May 19, 2015 Brain MRI all clear!
*August 18, 2015 PET/CT NED!!! amen!
*March 8, 2016 CT w/contrast NED
*March 10, 2016 Echo normal
*June 2016 Echo normal
*September 7, 2016 CT scan w/contrast NED
*September 8, 2016 Echo normal
* still receiving infusions every 21 days of Perjeta and Herceptin with no end in sight......
*March 2017 CT scan NED and echo normal
*May 2017 mammogram all clear!
*November 2017 CT scan NED and echo normal
*May 2018 echo normal
*December 2018 ct scan with contrast and nasty drink-all clear!


"Better pass boldly into that other world, in the full glory of some passion, than fade and wither dismally with age."
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Old 09-20-2016, 01:41 PM   #2
Donna H
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Re: Ever want to give in/up?

Hi Colleen
I am lucky enough to be NED, so I cant speak to the terminal part. However I can understand your desire to be free of the doctor visits and tests and treatments and the costs of co pays, gas to get to appointments and the mental toll of it all. One thing I think you will certainly find out is if you talk to your family about this they will tell you it is worth everything and anything to keep you with them as long as possible. Everyone is different and your decisions are yours to make regardless of what anyone else thinks or believes. Stay strong and find joy. Be happy.
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Old 09-20-2016, 04:59 PM   #3
MaineRottweilers
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Posts: 570
Re: Ever want to give in/up?

Colleen,

I agree with what Donna has said. Your family do not likely think about the cost, they do not want your money, the do not want to be free of you---they want you, every last minute they can possibly squeeze in.

I understand where you are coming from. We started around the same time. I however was not Stage IV at the onset. My children are grown. My SO's boys are in high school and I feel like I sometimes take him from his kids. My needs shouldn't outweigh theirs but I feel like they sometimes do and it makes me sad for them.

Isn't treatment tedious? I hate it, it causes me such anxiety. I am tired all of the time, I hurt, I ache, I feel worthless. BUT, I love life, I love my family, I love people, I love the Earth and its beauty. I would so miss all of these things. I can't quite. I have too many experiences left here. I'm ready when it's time, when things aren't quite as shiny and beautiful as they still are. I'll be ready when it becomes difficult to see beauty in my surroundings, it is then that I will let go, I will quit.

No one can tell either of us when is right. Only we can decide. I just want you to know, you are not alone in thinking this is just tedious. I'm sick of it. It's grossly unfair. Cancer sucks.
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Tracy Arcari
___________________________________________
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE

//
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Old 09-21-2016, 08:04 PM   #4
SoCalGal
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Location: LA LA Land
Posts: 1,607
Re: Ever want to give in/up?

Colleen,
I am so weary of treatment, limitations, worry and the stress of a chronic disease. The one thing that keeps me absolutely going forward is the thought of my kids experiencing the loss of their mom when I know that they want me around till I'm an older old lady. So I try to create good things for which to look forward, and do a lot of self talk to myself (obvi) to stay motivated. And I have a support group. And a therapist. Maybe you need more support resources around you - it really does seem to help many.
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 09-22-2016, 09:51 AM   #5
thinkpositive
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Join Date: May 2014
Location: San Diego
Posts: 411
Re: Ever want to give in/up?

Colleen,

I'm not in your situation so I'm not sure how I would feel if I were in your shoes. However, I just lost my husband a few weeks ago. He died unexpectedly at age 60. We were together for over 40 years. I can tell you that I would do anything and pay any amount of money to have him back. My guess is that your family would feel the same way about you!

Having a chronic disease must be draining. These diseases have both a physical and mental aspect to them. I believe at times, we focus only on the physical and ignore the mental. My guess is that what you are feeling is perfectly normal and that seeking out help from a professional would be helpful. I have found that they can help and offer different coping skills that can be effective.

I will keep you in my thoughts and prayers.

Take Care,
Brenda
__________________
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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Old 09-23-2016, 05:01 AM   #6
TiffanyS
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Join Date: Sep 2016
Posts: 459
Re: Ever want to give in/up?

Hello Colleen,

I understand where you are coming from, as I’ve been thinking the same thing myself lately. I was diagnosed with HER2 positive breast cancer in January, at the age of 41, and had a full mastectomy in February along with 14 lymph nodes removed (eight has cancer in them). I started Docetaxel, Carboplatin, and Herceptin in March, and radiation at the end of July. I also started taking the drug tamoxifen in mid-July. Everything was going well until a week before I was supposed to finish radiation. At that time, we noticed that the scab over my scar tissue had come off, and the doctor decided to biopsy the area. It turns out that there were still cancer cells there. I went back to see my surgeon, who told me the growth was left-over from my first surgery, and that he could remove it and all would be fine. In the meantime, my oncologist sent me for tests in order to “re-stage” me. The ultra-sound and bone scan were clear, and the breast MRI showed three small masses at my surgery site, but nothing in the lymph nodes. We were all happy with these results, and I was getting ready to have surgery until we got the results of my CT scan. It turns out that there are new spots on my lungs and a lymph node in my centre chest that is quite large. Given these new results, I will no longer be having surgery, and will be starting TDM1 next Tuesday, which I will be taking every three weeks for an indefinite period of time. My oncologist is also going to try and get me into some clinical trials. She told me that I am a rarity, and that she’s never known anyone who has gone though the treatment I’ve gone through, and still have cancer. She says that my breast cancer is the most aggressive cancer she’s ever seen, and she is looking into new, aggressive treatments for me. This does not leave me feeling very optimistic! I have been holding up as best I can, however, I have felt nauseous since I got the news, and I don’t have much of an appetite. Up until now, I have been fairly confident that I would beat this cancer, but that is no longer the case. Right now, my biggest fear is that my oncologist is going to tell me that I have six months to a year to live, even with the new medication, and that’s not what I want to hear at the age of 41! So, while I’m trying very hard to stay positive, I’m really having a hard time doing so, and I keep wondering if it’s worth putting my family and friends through so much stress just to extend my life by a year or two. In fact, I just got off the phone with my seven year old niece who told me that she’s sorry that I’m going to die, and that she will keep me in her heart forever, and she didn’t want to get off the phone with me. I think she’s scared it might be the last time she gets to talk to me. I tried to stay positive for her, but it breaks my heart to hear her say that. My aunt died of ovarian cancer six years ago after a six year battle, and I remember the stress my family was under at that time. Everyone’s life was on hold, as she would be good one day, and sick the next. No one knew what to expect. I really don’t want to put my family though that again. I also can’t help but wonder how anyone can get through their days, trying to live life to the fullest, knowing that there may not be many days left. So, like you, I am left wondering “what’s the point”. I’m sure my family would feel differently than I do, but that’s how I am feeling right now.
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Old 10-06-2016, 08:51 AM   #7
sarah
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Location: france
Posts: 1,648
Re: Ever want to give in/up?

Dear Colleen,
Your family and friends would definitely plead with you to keep on fighting. It gets hard and we all go through depression and fatigue but focus on the good things, those wonderful, precious moments that you would miss. You need to get your strength back. Try to work out your appts so that they don't wear you down, either do them all close together and get them done with or spaced out enough to give you breathing room. Try yoga or mindfullness, they may help you. Eat more chocolate and get some hugs. Please understand how precious you are and how needed.
hugs and love
sarah
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Old 10-07-2016, 02:39 PM   #8
ariana
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Posts: 162
Re: Ever want to give in/up?

Yea, when my treatments (which is every 21 days) falls at the beginning of the month,
and at the end of the month, with 1 Doc. visit, one echo heart test, followed by pet
scan which is 2 hrs from checking in till I leave, and one dental cleaning.

Total 6 trips every 90 days. So yea there are times I feel like throwing the towel in.
It seems over whelming at times. I am tired at times etc. But I am not in any
pain to speak of, and yes the out of pocket expense is there. But there are more
good days then bad. And I am so grateful to still be here. Everyday is an adventure
for me, and as long as I can drive and be a part of life around me, Im ok. I do have to watch DOING STUPID things like exploring caves etc. GOT A little to daring for age 62.
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