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09-12-2016, 05:34 PM
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#1
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Junior Member
Join Date: Sep 2016
Posts: 3
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Just Starting Out and Scared To Death
I have been reading through some of the posts and I am confused and frightened. I'm 71 years old, just diagnosed with Breast Cancer - left side - 10 o'clock area - about 6-8 mm. Biopsy with ultrasound done. Small metal piece inserted. I am expecting results of the BRCA 1/2 gene on Wednesday. Lumpectomy scheduled for this Friday (9/16). I also have a positive HER2 and was told I would be going on Herceptin. I really don't know where to start here. Can you tell me the meaning of the following abbreviations.... THC, THCP, SE. There are others and I am trying to figure this all out. Any and all advice is welcome. Also, what do the "tags" mean at the bottom of this page?Thanks
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09-13-2016, 07:24 AM
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#2
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Senior Member
Join Date: Mar 2011
Location: Pittsburgh, PA.
Posts: 260
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Re: Just Starting Out and Scared To Death
Sorry to hear of your diagnosis Grammy, but you found the best support site to utilize for your journey. It's definitely frightening and I remember being in your shoes 6 years ago. There are many survivors on this board with great knowledge to help you out. I think the abbreviations are the medications you will be receiving in your chemo plan? Others will chime in if I am wrong.
Good luck and we will be here to help you out when you need us!
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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09-13-2016, 07:34 AM
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#3
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Senior Member
Join Date: Dec 2013
Posts: 1,045
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Re: Just Starting Out and Scared To Death
Hi Grammy, I am so sorry to hear of your diagnosis ... but if you are HER2 positive, this is the best support group on the internet.
Yes, the abbreviations you mentioned are for different types of chemo
TCH -- Taxotere Carboplatin Herceptin
TCHP -- the above plus Perjeta
SE -- Side Effects
Not sure about the Tags either!  Please feel free to ask ANYTHING ... and you can also use the Search tab in the upper right corner under your name to look for specific topics here.
Good luck tomorrow with the lumpectomy! Once that pathology report is back, your docs will be better able to advise you about your treatment options.
Please keep us posted!
Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.
Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".
Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.
Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.
Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.
Nov 25, 2013 Begin 6 rounds TCH.
March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!
March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.
March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)
April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm
May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)
June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia
Nov 17, 2014 FINAL Herceptin!
Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.
Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.
Dec 17, 2014 Port is OUT!
January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
Last edited by Carol Ann; 09-13-2016 at 07:35 AM..
Reason: misspell correction
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09-13-2016, 11:03 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: Just Starting Out and Scared To Death
Hello,
6-8mm is very small. Hopefully the lumptectomy will take it all out which will probably be the case. Yes, it's frightening to hear the word "cancer" but yours has been caught very, very early and since you are 71, it will be less aggressive than if you were 40. Herceptin is a miracle drug and will ensure that you are cancer free. Your heart will be checked every 3 months because a small number of people can't tolerate it, hopefully you will be able to take it for the full amount of time. You may also be given a chemotherapy and probably will have some radiation on the area. This is all very usual and nothing to worry about. Chemotherapy can be tiring so if you do get that in addition to the Herceptin, best to plan to rest that day and the following day. In case you do radiation, radiation is always the same time every day for 5 weeks so chose a convenient time for you. After you finish chemo and radiation, you may be given a pill to take every day - Femara probably if you are Estrogen positive. This is best to take at night.
Remember that millions of women have gone through this and many have had advanced cancer and yet done very well. It's all very confusing and worrying for you right now but you will get through it and on this site you will find you have many caring friends ready to help make your journey easier and better.
Sites like breastcancer.org and the cancer.org may also be helpful particularly in preparing questions to ask your doctor. Always good to go into a meeting with the oncologist with a list of questions even if you don't ask them all, at least you know you will remember to ask those that you want to most.
Just something cancer doctors do: the surgeon wants to solve it all with surgery, the radiologist with radiation and the oncologist with chemo although they generally have a more rounded view point.
Take care and ask any questions you want to on this site, someone will answer and often there are people who are really knowledgeable and helpful
hugs
sarah
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09-13-2016, 02:29 PM
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#5
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Senior Member
Join Date: May 2013
Posts: 570
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Re: Just Starting Out and Scared To Death
Welcome, Grammy. A new diagnosis is frightening. I remember feeling quite lost and even in searching the boards for information, I was confused by the acronyms. Carol Ann covered the acronyms perfectly. There will be many more as you become engaged in conversation. Just let us know and we will clear them up for you. The tags can be used when you post to make searching posts less tedious. You can search for certain tag words but not many of us use that feature. It's just part of the BB software.
Again, welcome and I'm sorry for your diagnosis.
__________________
Tracy Arcari
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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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09-14-2016, 04:33 AM
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#6
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: Just Starting Out and Scared To Death
Hi Grammy,
Of course you are scared and out of your depth. Hearing the words: "you have cancer" is a terrible experience. I really thought I was not going to see my kids grow up. They were 3, 8, 12 and 16 at the time.
This will pass, but for now you are on a rollercoaster that you never wanted to get on.
It may help to know that I had a similar diagnosis 12.5 years ago, didn't get chemo or Herceptin, and am still alive and kicking. You will be getting much more targeted therapy than I did at the time, and although the coming months, perhaps year, will be hard, you will probably get through it without too many problems and then you will grow old without ever having a recurrence. Breast cancer has a much lower mortality rate than some other cancers.
Ask whatever you want to know, we are here for you. Vent, cry, express your fears; we've all been there.
Hugs
Jacqueline
__________________
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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09-17-2016, 07:11 AM
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#7
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Just Starting Out and Scared To Death
Dear Grammy,
Welcome to the club no one wants to join. If you have to go through this, it's best not to do it alone. This group is extremely knowledgeable and supportive.
Most people do just fine on Herceptin. They hardly even notice it. It's not chemo, it's a "monoclonal antibody." HER-2 positive cancers make too many of a particular kind of protein. Herceptin goes right to those cells and helps your body's immune system eliminate them.
I always tell people what a friend told me when I was diagnosed, "Don't worry about anything until you have to." Worry doesn't actually do any good, so it's better to focus on what you can do and what you can control. Eat well. Take walks and enjoy the outdoors. Watch funny movies. Meditate. Pray, if you're a praying person.
Another friend recommended guided imagery. I got some for relaxation and wellness, chemotherapy, and "cancer," and found it very helpful. They were actually all pretty similar, so if I had it to do over I'd just get one.
All the best,
Amy
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09-17-2016, 05:38 PM
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#8
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Senior Member
Join Date: Jul 2011
Posts: 954
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Re: Just Starting Out and Scared To Death
We'll be rooting for you, Grammyof7! ((HUGS))
Paula
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09-21-2016, 08:09 PM
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#9
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Re: Just Starting Out and Scared To Death
Welcome to the best online support community you could have! BTW Her2+ is the "good" kind of breast cancer - so don't worrry-- you're going to be around a long time, you might have to change your screen name to greatGrammy. Keep us posted, pun intended!
__________________
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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09-23-2016, 08:45 PM
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#10
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Junior Member
Join Date: Sep 2016
Posts: 3
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Re: Just Starting Out and Scared To Death
Thank you everyone for your wonderful comments and support. I had my lumpectomy last Friday (9/16) and the surgeon told me that there was no cancer in my nodes and that he got all the cancer. Also I got the report on the BRCA gene...... NEGATIVE! So... it seems I have dodged 2 bullets!! Next week I go for my first checkup with my surgeon and there will be lots to talk about. I don't have a "stage" as yet and do have lots of questions. It took me quite a while to come out of the anesthesia (I was intubated) and almost had to spend the night. Thank God my son and wife came for the weekend and were there to help my husband and me out.
One question that I have for you all...... are any of you diabetics? If so, how is the Herceptin, Chemo and Radiation affecting you?
Thanks again for all of your responses. I'll be in touch after my appt. next week.
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10-15-2016, 06:46 PM
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#11
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Junior Member
Join Date: Sep 2016
Posts: 3
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Re: Just Starting Out and Scared To Death
Hi Everyone! I am back again.
I was diagnosed with Stage 1...
Port is installed..... very sore muscles. First Chemo and Herceptin this coming Tuesday morning (10/18/16). VERY nervous. There are pills I will take before I go... Decadron - 4 the night before with dinner and 4 with breakfast (to help with negative reaction to chemo?). I also have Ativan for nerves/nausea and Zofran will be given after treatment. Thoughts on these medications?
I will have chemo once a week for 12 weeks...... Herceptin every 3 weeks for a year...... radiation 5 days a week for 6 weeks....... and some kind of cancer pill for 5 years.
I am concerned about nausea/vomiting...... and that it will affect my busy schedule. I know I will have to rest when I get tired.... but it's hard to make any plans until I know how I will react to the drugs.
3 questions...... 1 - can you all read this? I am not sure I should be starting another thread or just add to my original. 2 - Also, is anyone out there a diabetic? I have D2 and understand that these treatments can affect my blood sugar in a negative way. 3 - Last question (for now).... how should I prepare for my first infusions........ it will be a long day!
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10-15-2016, 07:30 PM
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#12
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Senior Member
Join Date: Dec 2013
Posts: 1,045
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Re: Just Starting Out and Scared To Death
Hydration is very important! My oncology nurse told me to drink 3 liters a day of water/fluids throughout chemo. I got a 1 liter jug at Walmart and put 3 rubberbands around it, and removed one every time I finished a liter throughout the day.
It will be a long day the first time ... they give you everything slowly to make sure you don't have any reactions to the drugs. Take something to read, music, snacks (my center had snacks and soft drinks on hand) and a blanket in case you get cold.
The drugs they are giving you before/after the chemo will help with nausea/vomiting ... everyone is different though and if you are having a hard time, let your team know right away! Don't suffer in silence!
It IS hard to plan until you know how you're going to react. As much as you can, rest rest rest when you can!
I am sure others will chime in here with more suggestions ... I am not a diabetic, so I can't address those issues, but someone who can will answer ... yes we can all see this!
Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.
Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".
Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.
Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.
Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.
Nov 25, 2013 Begin 6 rounds TCH.
March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!
March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.
March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)
April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm
May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)
June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia
Nov 17, 2014 FINAL Herceptin!
Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.
Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.
Dec 17, 2014 Port is OUT!
January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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10-16-2016, 10:19 AM
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#13
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Senior Member
Join Date: May 2013
Posts: 570
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Re: Just Starting Out and Scared To Death
Bring a friend or two, a deck of cards and a notebook. It's a long day and you'll be more or less captive. I take slippers to all of my infusions because I like to tuck my feet up under me and I take my shoes off. Infusion rooms are cold, dress warmly and comfortably. Make sure you wear something that opens in front so they can access your port.
I like to color, journal, do puzzles and sleep now that I go to infusions unaccompanied.
Stay ahead of the nausea. Take those meds before you become nauseated and keep taking them for at least four days afterward. Drink, nothing tasted good, I had to force myself to hydrate. Sliced lemons and limes in water was about all I could tolerate. I tried some lemon crystal lite, it was ok. Fruit smoothies, watermelon and canned peaches also worked well.
Do not suffer any symptoms for more than a day, you do not have to tough it out. There are lots of things they can do for you. I was able to work through my first treatment but when I was redx'd, I wasn't able to work during chemo so it can go either way.
Love and luck.
__________________
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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