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Old 04-04-2018, 06:45 AM   #21
MaineRottweilers
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Join Date: May 2013
Posts: 568
Re: Insurance Frustrations

I did lose my COBRA on March 10. I did make the switch to Medicare and Supplemental. So far, the transition has been seamless but it has only been a few days. We shall see what happens as the next billing cycle approached. My Employer's health insurance was amazing, the best you can get. My max out of pocket was $2500, the monthly premium including dental and vision was around $700 (COBRA payment) and they never gave me any trouble until the end. I was a catastrophic loss on their profit margin, who could really blame them?

My treatment plan has no changed thus far. Fingers crossed.
__________________
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 04-04-2018, 12:30 PM   #22
Lucy
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Join Date: Oct 2014
Posts: 233
Re: Insurance Frustrations

Fingers crossed that it's as smooth as it seems now!
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Old 04-05-2018, 04:52 PM   #23
SoCalGal
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Join Date: Apr 2007
Location: LA LA Land
Posts: 1,541
Re: Insurance Frustrations

There is also patient help through Genentech if need be. xoxo
__________________
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, to remove skin mets. Not able to get clear margins. So schedule another 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 – cut out, cut out, 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. New onc orders PET/ct & Brain MRI to re-stage me.
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 trial but then 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. (premeds for Herceptin now)
Sept 2011 Tykerb, Herceptin, Zometa, Avastin. (switched back to Zometa, pet/ct bone mets seemed worse on Xgeva)
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 GAMMA ZAPPA continue HAPZ
APRIL 2013 - cancerversary 17 years from original diagnosis. 6 yrs stage 4. [/COLOR][/B]
"FAILED" PETscan on 4/2/13 (WTF)
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 - NEWSFLASH:
6 YEARS POST GAMMA ZAPPA, 7 YEARS STAGE 4 and 18 YEARS FROM ORIGINAL DX! (CUCK FANCER)
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 Herceptin, PERJETA, xgeva. Adding back Avastin to see if lungs will go quiet
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 and due for MRI brain check (check please!).
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: CA15‐3=46.9 CEA=12.3 CA 27.2=79 SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YEARS STAGE FOUR!
(20 years from original diagnosis) July 2016 - continue HAP plus Xgeva. Not NED but not DEaD.
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
2017 I AM COMING FOR YOU!
APRIL 2017 10 YEARS MBC
December 2017 - Progression and infusion reaction to herceptin, getting eval for desensitization protocol for trastuzumab and going to switch treatment
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY - lung biopsy and foundation one testing pending
ON A FREE FALL...CuckFancer!! 11 years MBC.
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Old 05-03-2018, 03:46 PM   #24
Unclaimed
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Join Date: Apr 2018
Location: Western Maryland
Posts: 27
Re: Insurance Frustrations

Hello Tracy,
Does the switch to Medicare mean you'll receive your next H & P in August as planned? I think of you often. I joined this site because my MO wanted to add Perjeta to my treatment and I was unsure. I was only on Herceptin. I just had my first Perjeta treatment today. Your situation factored into my decision. What if my insurance does the same thing? I realized I shouldn't waste time fretting over should I or shouldn't I take Perjeta, because I might lose my chance to have access to Perjeta if my insurance denies it too. I'm so sorry you've had to go through all of this, but also thankful that you've shared so much. You made me quit whining and follow the treatment my MO thinks is most beneficial for me. Thank you, and I'm thinking of you 💙💙
Ana
__________________
September 2017: woke up one morning and noticed my wrist was slightly swollen. A puffy wrist. That is how it all started
October 2017: went to orthopaedic surgeon to find out what kind of injury was causing my forearm to swell, orthopaedic surgeon recognizes lymphedema, and sent me to breast clinic
November 6, 2017: first appointment with breast surgeon and ultrasound
November 17, 2017: biopsy: 4.4x1.7x2.8 mass, infiltrating duct carcinoma, hormone receptor negative, enlarged axillary lymph node although after breast mass was biopsied, I refused needle biopsy of lymph node due to discomfort, since lymphedema had already developed it's obvious the lymph node mass is pathologic, they'd gotten all the chunks outta my flesh for the day that I was going to allow
November 27, 2017: contacted by nurse navigator to arrange chemotherapy treatments through oncology department, refused referral and treatmemt
December 5, 2017: follow up with breast surgeon scheduled but I failed to attend
December 2017: found homeopathic physician, began taking Chaga mushroom fungus and many other natural supplements, Injecting Mistletoe, following Ayurvedic diet, breathing, mediation, yoga
January 24 2018: found lumps in neck (supraclavical lymph nodes)
January 25, 2018: phone call to breast surgeon, says mass is too large for surgery, and refers to medical oncologist
January 31, 2018: first appointment with Medical Oncologist
February 1, 2018: first scan, found Mets in bones, possibly liver as well but inconclusive since I refused to allow them to inject me with dye for the scan
February 2, 2018: follow up with MO for scan results, he had samples of Capecitabine and advised to take 4 pills every 12 hours for 7 days. Ordered my prescription for Capecitabine and HER2 test which had not been completed on my sample at time of biopsy in November, convinced me to meet with Radiologist, tumor was very, very large now, agreed to try targeted therapy radiation treatment
February 8, 2018: first radiology appointment and first Xgeva
February 9, 2018: follow up with MO, results are back from pathology and my sample is HER2-positive, MO wants me to do this infusion "antibodies" thing...look, I just got my head around radiation, now you want IV stuff???? Not loving my MO today
February 13, 2018: radiology for "measurements" and tattoos, lol, both of my breasts are covered in colourful tattoos...was hilarious watching them try to figure out how to put tiny dots over my flamboyant boobs, finally had to resort to sticky tape and sharpie markers
Febuary 15, 2018: first radiation treatment, cried like a baby
February 26, 2018: applied to Institute for Advanced Reconstruction for lymphedema surgery, denied due to active cancer
March 1, 2018: first Herceptin infusion, sobbed like a psychopath, the social worker sat with me for an hour! She was a blessing as I was terrified
March 2, 2018: radiation treatment halted due to extensive skin damage after just 12 treatments, radiation literally dissolved my nipple, yep, it's gone, literally just peeled off and nothing but the nub remains, it took three weeks and many different remedies to heal the blisters, couldn't even shower and dress for a couple weeks, it was a painful oozing mess
March 21, 2018: applied to John Hopkins for lymphedema surgery, still pending..
March 22, 2018: second Herceptin infusion, still emotional but physically much easier, social worker made referral to Physical Therapy for me for lymphedema treatment
March 26, 2018: had assessment for lymphedema and follow up with MO, physical therapist made MO sign waiver because of my active cancer status, MO wants me to add Perjeta to my next infusion...really, more stuff..
April 2, 2018: first lymph drainage massage treatment
April 5, 2018: follow up with Radiologist, skin healed well enough to wear a sports bra...woohoo...not resuming radiation treatment as it's been too long since last treatment and significant reduction in size of tumor, my left boob no longer looks like a football, still larger than the right one, but not much
April 20, 2018: heavy bandages applied to left arm to reduce lymphedema swelling
May 3, 2018: first Perjeta infusion, now on H & P, and Capecitabine, and Xgeva every 3 months
May 30, 2018: first PET scan, came back NEAD
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Old 05-09-2018, 06:21 PM   #25
SoCalGal
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Join Date: Apr 2007
Location: LA LA Land
Posts: 1,541
Re: Insurance Frustrations

Ana - perjeta is a very good drug with herceptin, in my opinion. Also, I recently found this new medicine, for managing side effects of diarrhea. I asked my gastro doc and my oncologist and neither had heard of it, but it's been used for HIV patients. Anyhow my worst side effect when on H/P was terrible diarrhea, and taking Imodium had its own drawbacks, so just wanted to share this newer approach: https://www.mytesi.com
__________________
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, to remove skin mets. Not able to get clear margins. So schedule another 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 – cut out, cut out, 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. New onc orders PET/ct & Brain MRI to re-stage me.
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 trial but then 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. (premeds for Herceptin now)
Sept 2011 Tykerb, Herceptin, Zometa, Avastin. (switched back to Zometa, pet/ct bone mets seemed worse on Xgeva)
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 GAMMA ZAPPA continue HAPZ
APRIL 2013 - cancerversary 17 years from original diagnosis. 6 yrs stage 4. [/COLOR][/B]
"FAILED" PETscan on 4/2/13 (WTF)
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 - NEWSFLASH:
6 YEARS POST GAMMA ZAPPA, 7 YEARS STAGE 4 and 18 YEARS FROM ORIGINAL DX! (CUCK FANCER)
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 Herceptin, PERJETA, xgeva. Adding back Avastin to see if lungs will go quiet
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 and due for MRI brain check (check please!).
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: CA15‐3=46.9 CEA=12.3 CA 27.2=79 SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YEARS STAGE FOUR!
(20 years from original diagnosis) July 2016 - continue HAP plus Xgeva. Not NED but not DEaD.
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
2017 I AM COMING FOR YOU!
APRIL 2017 10 YEARS MBC
December 2017 - Progression and infusion reaction to herceptin, getting eval for desensitization protocol for trastuzumab and going to switch treatment
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY - lung biopsy and foundation one testing pending
ON A FREE FALL...CuckFancer!! 11 years MBC.
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Old 05-09-2018, 06:48 PM   #26
Unclaimed
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Join Date: Apr 2018
Location: Western Maryland
Posts: 27
Re: Insurance Frustrations

Hello SoCalGal
Thank you for replying. I did add Perjeta to my last Herceptin infusion which was last Thursday. I had to go to the bathroom on Monday a few times more than normal, but other than that, I haven't noticed any side effects. I'm glad I added it. Insurance companies seem be too powerful, inefficient, and focused on profit rather than health care. I didn't want to be in a situation where I hesitated, and ended up missing out on something that's beneficial because the insurance decided not to cover it. What has happened to Tracy is awful. I hope her situation is resolved, and it doesn't happen to anyone else.
Thinking about you Tracy, please update when you can.
__________________
September 2017: woke up one morning and noticed my wrist was slightly swollen. A puffy wrist. That is how it all started
October 2017: went to orthopaedic surgeon to find out what kind of injury was causing my forearm to swell, orthopaedic surgeon recognizes lymphedema, and sent me to breast clinic
November 6, 2017: first appointment with breast surgeon and ultrasound
November 17, 2017: biopsy: 4.4x1.7x2.8 mass, infiltrating duct carcinoma, hormone receptor negative, enlarged axillary lymph node although after breast mass was biopsied, I refused needle biopsy of lymph node due to discomfort, since lymphedema had already developed it's obvious the lymph node mass is pathologic, they'd gotten all the chunks outta my flesh for the day that I was going to allow
November 27, 2017: contacted by nurse navigator to arrange chemotherapy treatments through oncology department, refused referral and treatmemt
December 5, 2017: follow up with breast surgeon scheduled but I failed to attend
December 2017: found homeopathic physician, began taking Chaga mushroom fungus and many other natural supplements, Injecting Mistletoe, following Ayurvedic diet, breathing, mediation, yoga
January 24 2018: found lumps in neck (supraclavical lymph nodes)
January 25, 2018: phone call to breast surgeon, says mass is too large for surgery, and refers to medical oncologist
January 31, 2018: first appointment with Medical Oncologist
February 1, 2018: first scan, found Mets in bones, possibly liver as well but inconclusive since I refused to allow them to inject me with dye for the scan
February 2, 2018: follow up with MO for scan results, he had samples of Capecitabine and advised to take 4 pills every 12 hours for 7 days. Ordered my prescription for Capecitabine and HER2 test which had not been completed on my sample at time of biopsy in November, convinced me to meet with Radiologist, tumor was very, very large now, agreed to try targeted therapy radiation treatment
February 8, 2018: first radiology appointment and first Xgeva
February 9, 2018: follow up with MO, results are back from pathology and my sample is HER2-positive, MO wants me to do this infusion "antibodies" thing...look, I just got my head around radiation, now you want IV stuff???? Not loving my MO today
February 13, 2018: radiology for "measurements" and tattoos, lol, both of my breasts are covered in colourful tattoos...was hilarious watching them try to figure out how to put tiny dots over my flamboyant boobs, finally had to resort to sticky tape and sharpie markers
Febuary 15, 2018: first radiation treatment, cried like a baby
February 26, 2018: applied to Institute for Advanced Reconstruction for lymphedema surgery, denied due to active cancer
March 1, 2018: first Herceptin infusion, sobbed like a psychopath, the social worker sat with me for an hour! She was a blessing as I was terrified
March 2, 2018: radiation treatment halted due to extensive skin damage after just 12 treatments, radiation literally dissolved my nipple, yep, it's gone, literally just peeled off and nothing but the nub remains, it took three weeks and many different remedies to heal the blisters, couldn't even shower and dress for a couple weeks, it was a painful oozing mess
March 21, 2018: applied to John Hopkins for lymphedema surgery, still pending..
March 22, 2018: second Herceptin infusion, still emotional but physically much easier, social worker made referral to Physical Therapy for me for lymphedema treatment
March 26, 2018: had assessment for lymphedema and follow up with MO, physical therapist made MO sign waiver because of my active cancer status, MO wants me to add Perjeta to my next infusion...really, more stuff..
April 2, 2018: first lymph drainage massage treatment
April 5, 2018: follow up with Radiologist, skin healed well enough to wear a sports bra...woohoo...not resuming radiation treatment as it's been too long since last treatment and significant reduction in size of tumor, my left boob no longer looks like a football, still larger than the right one, but not much
April 20, 2018: heavy bandages applied to left arm to reduce lymphedema swelling
May 3, 2018: first Perjeta infusion, now on H & P, and Capecitabine, and Xgeva every 3 months
May 30, 2018: first PET scan, came back NEAD
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