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Old 03-28-2015, 08:35 AM   #1
v-ness
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boyfriend d/x with stage 4 cancer

i am almost 5 yrs out from BC, almost done with tamoxifen. i lost my husband in 2007 to stage 4 esophageal cancer only 10 weeks from diagnosis. on sunday my boyfriend went to the ER because of unrelenting fatigue and lack of appetite and dizziness 5 wks out from the flu. blood tests showed him anemic and in need of 2 units of blood, so they admitted him. i KNEW at that moment he had cancer and it was advanced - that was exactly how it had gone down with my husband (who needed 4 units). CT showed 'nodes on liver' so my worst fears were being realized. they did a blood test for a primary cancer and he came up positive for colon cancer, confirmed by another CT and colonoscopy.

i am absolutely beside myself. i can't believe this is happening again. he asked me to be calm and strong and 'his rock' and when i talk to him i am, and sometimes i am even positive and hopeful by myself, then have extreme meltdowns. he's got a consultation at Dana Farber april 6 and will have surgery on his colon and assigned his chemo cocktail. brain scan and all showed no other mets.

the reason i am turning to you guys is because i am extremely anxious about his continued level of fatigue. he felt great immediately following the blood transfusion and dealt with all the news. however, yesterday when the onco called him about his path report she told him he was Stage 4 and apparently he hadn't realized that previously! i thought he knew. i swear i even referred to it. anyway, he said that he was 'enjoying looking at the sky and trees' and couldn't wait to climb a mountain again (2 yrs we vacationed in cinque terre and hiked). but at 9 AM this morning he emailed saying he was going to try to come over but wasn't sure he had the energy.

i know the psychic drain of a cancer diagnosis quite intimately, so i suspect some of his exhaustion is from that. god knows it makes you want to curl up and hide. but i wanted to ask those with liver mets at diagnosis - did you feel a high level of fatigue? surgery is 1pril 8 and yet he has only walked up and down his driveway. for years he went to CrossFit and until the flu he was quite a vital and fit man. his kids are going to pay for a personal trainer who deals with ill people but it hasn't happened yet. i am so worried that his fatigue will make him lose even more weight and lose strength. he also has blood clots in his family history so i stress to him how important it is to MOVE!!

he is a worrier, big-time, and has had much on his plate in the past year. i am afraid he is collapsing under the weight of this. is this kind of fatigue normal after he got all that blood back? i know this is breast cancer specific here, but stage 4 and liver mets must still have a lot in common across the cancer board.

i am giving him Love, Medicine and Miracles because i think he will gain a lot from reading it. i am re-reading it myself. i realized last night while reading it that i was the 'exceptional patient' the book speaks of. i want jon to be the exceptional patient, too. but i know i can't make someone pull themselves up by their bootstraps even if i am helping. so i am distraught....

v
__________________
8/09 - IDC 1.8 cm triple positive, lumpectomy left breast
10/09 began chemo (taxotere & carboplatin) and weekly herceptin.
1/21/10 finished chemo, continued on herceptin every 3 weeks until 10/2010.
2/10 began 7 wks of radiation
6/10 mom dies of primary peritoneal ovarian cancer
8/10 got my last remaining ovary out
10/10 mammogram all clear
3/11 MRI shows 5 'spots' in right breast, largest 1 cm unidentifiable on US
needle biopsy proved the largest to be old inflamed cyst -phew!
7/10 switched to Arimidex
8/9 switched to Femara - allergic to arimidex
Femara made me lose hair quickly so switched to Aromasin
Aromasin made my hair fall out too and the bone pain was too much.
back on Tamoxifen 1/2013.
blood clot from trains and planes 5/2014 so on coumadin per onco for as long as i am on tamoxifen
tamoxifen was supposed to be up with my 5 yrs in may but my boyfriend was diagnosed with stage 4 colon cancer so i am staying on tamoxifen indefinitely because i want some ammo against BC, given the stress. lost my husband in only 10 wks in 2007 to stage 4 esophageal cancer.
cancer's screwing with another man i love
2/2016 - 6yrs in remission, off tamoxifen and off coumadin - yay!
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Old 03-28-2015, 09:27 AM   #2
jaykay
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Re: boyfriend d/x with stage 4 cancer

I'm so sorry. I haven't been in that position but I can only say that you need to support him like you wanted to be supported when you had cancer.

He does have to pull himself up from his bootstraps and you know that the time between diagnosis and treatment is the worst - limbo land. I'm sure there are social workers/psychologists who are available to help both of you through this.

Cancer sucks

Janis
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 03-28-2015, 04:38 PM   #3
v-ness
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Re: boyfriend d/x with stage 4 cancer

thanks so much for responding, janis. it's true, he has to break out of his current daze and i need to find someplace to talk. i thought i could here, but 47 people read my story and only you responded. valerie
__________________
8/09 - IDC 1.8 cm triple positive, lumpectomy left breast
10/09 began chemo (taxotere & carboplatin) and weekly herceptin.
1/21/10 finished chemo, continued on herceptin every 3 weeks until 10/2010.
2/10 began 7 wks of radiation
6/10 mom dies of primary peritoneal ovarian cancer
8/10 got my last remaining ovary out
10/10 mammogram all clear
3/11 MRI shows 5 'spots' in right breast, largest 1 cm unidentifiable on US
needle biopsy proved the largest to be old inflamed cyst -phew!
7/10 switched to Arimidex
8/9 switched to Femara - allergic to arimidex
Femara made me lose hair quickly so switched to Aromasin
Aromasin made my hair fall out too and the bone pain was too much.
back on Tamoxifen 1/2013.
blood clot from trains and planes 5/2014 so on coumadin per onco for as long as i am on tamoxifen
tamoxifen was supposed to be up with my 5 yrs in may but my boyfriend was diagnosed with stage 4 colon cancer so i am staying on tamoxifen indefinitely because i want some ammo against BC, given the stress. lost my husband in only 10 wks in 2007 to stage 4 esophageal cancer.
cancer's screwing with another man i love
2/2016 - 6yrs in remission, off tamoxifen and off coumadin - yay!
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Old 03-28-2015, 05:18 PM   #4
Lucy
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Re: boyfriend d/x with stage 4 cancer

Hi Valerie,

I'm sorry you feel that you're not getting the support you expected here but you do have it. You can count me as one of those who read the post and made no comment. For one thing, you seemed to be specifically reaching out to those with liver mets, which I'm glad to be able to say, I don't have. Also, I'm exhausted today so I find it difficult to put together a coherent sentence.

Having said that, I realize that I can speak somewhat to the fatigue, since I'm always so tired. Fatigue probably isn't unexpected at this point. For one, he has cancer. For another, he's carrying the burden of having just been told he has cancer. Either of those on its own could drain the energy out of anyone and he's dealing with both. It's probably easier said than done but at this point I wouldn't be overly concerned about the fatigue. If you're going with him to his appointments I would ask the oncologist about it and see what they say. They would know better if it's normal or not.

In any case, I'm glad you're there for him and he's lucky to have you. Again, don't think you don't have the support of those of us on the board because you do, we just don't always know what to say.
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Old 03-28-2015, 05:54 PM   #5
KDR
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Re: boyfriend d/x with stage 4 cancer

v-ness,
I know exactly how you feel when you post with need, information, or something great to share and it doesn't seem acknowledged.
I don't visit here much these days, but checked in today, and I'm glad I saw your post. Life seems unfair sometimes, and you have had your share of serious challenges. Now someone you love is in need and hurting. You want it all to go away. I get it.
I just want to say I'm sorry that cancer has infiltrated your life again...but your boyfriend has much to gain from your insight and experience.
My doctor's wife had colon cancer with liver mets, in fact, her liver was described as a shriveled up piece of sponge-like material. That was 15 years ago. She had colon surgery and the chemo rid her liver of tumors and it is now fully regenerated and she is drug and disease free. I hope her story gives you a little hope.
Medically, you are in a good place with Dana Farber. I would also look into MART-10 Vitamin D infusions, as well as glutathione infusions (which eliminate or decrease neuropathy when on chemo). The MART-10 has shown great efficacy in stopping liver cancer cells in particular. Please google for more information on that. If you'd like the name and number of a hematologist/oncologist that specializes in alternative medicine and supplementation, please PM me.
Keep your head up.
Karen

Article
19-Nor-2α-(3-hydroxypropyl)-1α,25-dihydroxyvitamin D3 (MART-10) is a potent cell growth regulator with enhanced chemotherapeutic potency in liver cancer cells.


Kun-Chun Chiang

Chun-Nan Yeh

Huang-Yang Chen

Jim-ming Lee

Horng-Heng Juang

Miin-Fu Chen

Masashi Takano

Atsushi Kittaka

Tai C Chen
[more]
General Surgery Department of Chang Gung Memorial Hospital, Chang Gung University, Keelung, Taiwan.
Steroids (Impact Factor: 2.72). 08/2011; 76(13):1513-9. DOI:*10.1016/j.steroids.2011.08.006
Source: PubMed
ABSTRACT The discovery that the active form of vitamin D, 1α,25-dihydroxyvitamin D [1α,25(OH)(2)D] can modulate cellular proliferation and differentiation of cancer cells has led to its potential application as a chemotherapeutic agent to treat a variety of cancers. However, the use of 1α,25(OH)(2)D is limited due to its lethal side effect of hypercalcemia upon systemic administration. To overcome this drawback, numerous analogs have been synthesized. In this report, we examined the anti-proliferative activity of a new analog, 19-nor-2α-(3-hydroxypropyl)-1α,25(OH)(2)D(3) (MART-10), in HepG2 liver cancer cells, and studied the potential mechanisms mediating this action. We found that MART-10 exhibited approximately 100-fold greater activity than 1α,25(OH)(2)D(3) in inhibiting HepG2 cell proliferation as determined by cell number counting method. MART-10 was also approximately 100-fold more potent than 1α,25(OH)(2)D(3) in the upregulation of p21 and p27, that in turn arrested HepG2 cells at the G(0)/G(1) phase to a greater extent. Given that no active caspase 3 was detected and treatment with 1α,25(OH)(2)D(3) or MART-10 did not further increase the fractions of apoptotic and necrosis cells over the controls, the growth-inhibitory effect of 1α,25(OH)(2)D(3) and MART-10 on HepG2 cells may not involve apoptosis. Overall, our findings suggest that MART-10 is a good candidate as a novel therapeutic regimen against liver cancer. Further pre-clinical studies using animal models and the subsequent human clinical trials are warranted.
http://www.researchgate.net/publicat...r_cancer_cells [accessed Mar 28, 2015].
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Old 03-28-2015, 05:54 PM   #6
linzer
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Re: boyfriend d/x with stage 4 cancer

I don't have advice, but wanted to chime in and say that I hope you and your BF find the strength you need, along with the support of loving family and friends. Dana Farber is an amazing place. I owe them my life hugs and keep us updated!

Linda
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---------------
5/15/14 Dx IDC, right breast, 2 cm with 3 cm lymph node ER/PR- Her2+

6/11/14 Taxol / Herceptin / Perjeta

9/17/14 Lumpectomy, axillary lymph node dissection 3/9 nodes showed previous involvement but all clear due to THP!!

9/24/14 NED

10/8/14 AC x 4

12/16/14 rads x 20 WBRT only
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Old 03-28-2015, 10:21 PM   #7
Nurse4u2day
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Re: boyfriend d/x with stage 4 cancer

V-ness I am so sorry for all that you and your boyfriend are going through. I can't reply to you in regards of fatigue and and liver mets as thankfully I was not diagnosed at stage 4 ... But what I can say is this as somebody else mentioned just care for him and treat him I the way that you wanted others to care for you.
My best friend of 22 years was just diagnosed with breast cancer with possible node involvement ( still pending biopsy results) that said I am trying my hardest to treat her how I wanted to be treated during my Cancer diagnoses. I have also made sure to only give her advise when she ask for it and I'm very cautious in giving that advise. For the most part I just sit and listen.
I wish I had the words to make you feel better but all I can say is that you and your boyfriend are in my thoughts .
Tamara
__________________
]11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
Ki67=23%
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
11/19/21- 8 years today I officially remain NED and in 12 days I will be having a lymphnode transfer to help decrease some mild lymphedema! Still working, living life and soon to see a day I thought never would happen and that’s becoming a grandparent June 22nd.
11/19/2023 - 10 years since diagnosis and I remain NED
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Old 03-29-2015, 03:58 AM   #8
dita
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Re: boyfriend d/x with stage 4 cancer

No advice but just wanted to give you a virtual hug. Your partner is in extreme shock so maybe he just needs a little time to get his head around his diagnosis and be alone for a while. Wishing you both the best of luck.
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Old 03-29-2015, 07:26 AM   #9
Juls
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Re: boyfriend d/x with stage 4 cancer

I was one of the 47 who read your original post and did not reply - I don't have any advice but just wanted to say I am thinking of you.

I was diagnosed 2 years ago and had a very small Liver met found 3 months later! (Oncologist told me that I had no symptoms at that time) After Doxetaxol, Herceptin and Perjeta it is no longer seen on scan!
Regards
Juls



Her2+ Er+ Pr+
On Herceptin, Perjeta & Femara
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Old 03-29-2015, 11:07 AM   #10
forher
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Re: boyfriend d/x with stage 4 cancer

Dear Valerie,
I'm so sorry to hear about the loss of your husband and the grief you faced then and now. I don't know what to say except that I hope you and your boyfriend find some answers and a treatment plan that works. My heart truly breaks with every new diagnosis of cancer. I think even though readers may not post, they are still thinking of you. I understand the need for a reply. That's why I'm posting. I don't have any advice. But I do hope you have a good support group behind the both of you. It's ok to have a meltdown and feel overwhelmed by all this. I hope you'll come back and post on his progress. I'll follow this thread and offer any encouragement and support I can.
__________________
June 2013 DX Stage 3 Idc, rt breast, er/pr-, her2+++
PET/CT/Brain MRI clear
ACTHP until Dec 2013
BMX Dec 2013
28 Rads Feb 2014
Exchange surgery June 2014
Herceptin end Sept 2014
Headaches start Oct 2014
CT body clear Nov 2014
Brain MRI 4 lesions Nov 2014
SRS via LINAC in Dec 2014
Rt side infection, hospitalized, lost right implant on Jan 1, 2015
Jan 14 2015 MRI brain lesions shrinking
Jan 27 2015 Re-start herceptin every 3 weeks
Feb 2015 CT/PET Body clear
Re-start Lymphedema treatment April 2015
Breast MRI clear April 2015
Brain MRI April 2015 - shows everything stable, nothing new (whew)
CT scan June 2015 - clear
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Old 03-29-2015, 11:42 AM   #11
MaineRottweilers
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Re: boyfriend d/x with stage 4 cancer

I am sorry that I have little to contribute but my good will. I have not had to deal with supporting a family member who is going through treatment so I don't even pretend to understand what it might be like on the other side. I'm sorry that you are in this position (again) and I hope that things work out for you both.
__________________
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 03-31-2015, 11:57 AM   #12
Jean
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Re: boyfriend d/x with stage 4 cancer

I do not have any supportive advise on your boyfriends dx.
I can only reach out to you and say that I am so very sorry that he has been dx. It is unfair that you would have this happen again to you. All of us are so fragile and can be dx. at any time
with this dreaded disease. Let alone that you had to fight if yourself, but now again with a loved one. You have and must take care of yourself to remain strong and supportive of him.
Keep your immune as healthy as possible. This is such a stressful time for you. I wish I could help you with more.
My thoughts and prayers are with you and Jon and his family.
Kindest Regards,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 03-31-2015, 01:03 PM   #13
Lisalou
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Re: boyfriend d/x with stage 4 cancer

Hang in there. Come here when you need to let down, vent or just be heard. Take care.
thinking of you
Lisa
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[SIGPIC]Lisa
Routine mammogram 12/20/2013
Call back with repeat films on12/31/2013 Ultrasound with core needle biopsy same day
Dx 1/2/2014 IDC ER/PR+
1/10/14 HER2 +
2/14/14 BRCA results negative
2/17/2014 skin & nipple sparing BMX with reconstruction Tissue expanders placed
IDC Stage 2A left breast. 9mm tumor no other CA 1/4 nodes positive
ER + PR + Her2 +(by FISH)
Right breast no cancer, sclerosing adenosis
3/13/14 Round 1 AC minimal side effects
3/27/14 Round 2 AC
4/10/14 Round 3 a little more nausea
4/24/14 round 4 hurray! Done with phase 1!
5/8/14 THP ( taxol weekly x12, Herceptin & perjeta every 3 weeks x 4)
7/24/14 done with chemo
Continue of Herceptin every 3 wks x 1 yr
5/14 start Tamoxifen x 5 years
8/18/14 removal of TEs silicone implants placed
9/14/14 Cellulitis Right Breast, suspect infected implant. Managed with Oral antibiotics, avoided surgery to remove implant. Whew!
12/17/14 nip & tuck revision of Left breast

We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face. The danger lies in refusing to face the fear, not in daring to come to grips with it. We must do that which we think we cannot do. -Eleanor Roosevelt
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Old 03-31-2015, 03:36 PM   #14
BonnieR
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Re: boyfriend d/x with stage 4 cancer

I am reading, and was not going to reply as I can't contribute to the conversation specifically. But of course all of us want support in rough times, so I will offer you that
Knowledge of Cancer can be a double edged sword because you know some of the negatives and hurdles he has ahead. But you also know the language and how to get through the confusing first days in cancerland. And how much hope that can be found
Remember the things that helped you in the beginning. Keep notes, ask questions, be an advocate. Get a second opinion. Let the dust settle and always keep the faith
__________________
Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 03-31-2015, 06:15 PM   #15
Carol Ann
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Re: boyfriend d/x with stage 4 cancer

I just want to say too that I am so sorry you are both having to go through this. It truly does suck.

Carol Ann
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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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Old 04-01-2015, 12:40 PM   #16
StephN
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Re: boyfriend d/x with stage 4 cancer

Dear Valerie -
I share the shock and extreme letdown of an advanced cancer re-entering your life. I saw your post but was at my mother's across the state, where I often am these days.

One thing I can speak to is mets to the liver. My BC went to my liver big time, but I am fortunate that the drug combo worked, finally leaving only 3 small areas of scar, and then no evidence there ever were any tumors. The liver will regenerate, and I am hoping by now your dear man will have begun treatment or had his surgery.

With breast cancer these days chemo is often given prior to surgery, but I have no idea if they do the same for other cancers where chemo is indicated.

PS - Be aware that non-members may view posts, but not reply. So many of those early readers could have been among the large number of non-members who view this site.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 04-15-2015, 08:40 AM   #17
Mtngrl
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Re: boyfriend d/x with stage 4 cancer

Dear Valerie,

I was one of your 47 early readers. I, too, didn't know what to add to what was said to you in the beginning--to remember what kind of support you needed and offer your boyfriend those things. On reflection, I do have something to add. Men and women are different, and every individual is different, so now my advice would be to pay close attention to what he's going through and how he's showing his needs, and try to respond appropriately to his signals.

I agree with Bonnie's comment about how knowing so much about cancer can be a double-edge sword. Try not to let your knowledge of the dark side overwhelm your ability to find hope in the situation. I fell into that "knowing too much" trap myself recently. I shared with one friend that things looked pretty grim for a mutual friend with Stage IV cancer. She said, "you never know how it'll be for her." She was so right. Some people with grim diagnoses survive anyway. And some who "should" do well actually don't.

The best thing you can do for your boyfriend is take care of the anxiety, fear, and grief that this is triggering in you. Whenever someone experiences trauma, it usually dredges up past losses and traumas. Your feelings about this are real, and valid, but it's possible your reaction is conditioned by those ghosts from the past. You need to take care of yourself so you can be strong for him. As the saying goes, "One cannot give with empty hands."

This situation sucks, and it's totally unfair. I'd be mad and hurt too if I were you. I'm sorry you're going through this.
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Amy
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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 04-16-2015, 06:05 AM   #18
Redwolf8812
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Re: boyfriend d/x with stage 4 cancer

I'm so sorry, Valerie. Praying for many, many good days, weeks, months, and years for both of you.

- Penny
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Penny

July 2010 IDC grade 3 stage 3 er-/pr-/her2+++, BRCA2
Skin mets 11/10
1/12/11 Surgery path - complete response
Rads 2/11-4/11
Liver mets 11/11 now stage IV
Xeloda & Tykerb 12/11
Allergic reaction to Tykerb 12/11
Xeloda only 12/11
Added herceptin January 2012
Progression February 2012.
Started Veliparib (parp inhibitor) trial 3/5/12.
4/30/12 Liver met shrunk in half! Praise Jesus!
6/18/12 another 25% shrinkage, down to @3x3. Thank you, God!
8/8/12 Brain MRI - clear! Praise to You, Lord Jesus Christ!
8/27/12 Thank You, God - another 20% decrease in liver met! Now @ 3.2x1.9.
10/5/12 stable-ish
11/21/12 allergic reaction to carboplatin
12/10/12 stable & progression
12/31/12 liver ablation
2/6/13 ablation successful but new tiny mets in liver. May or not be cancer.
Another ablation scheduled 2/28/13. Cancelled.
2/20/13 started taxotere & herceptin. Pretty toxic. Oncologist says start tdm1 4/3/13. From her lips to God's ears. Praying for no allergic reactions/adverse side effects.
3/28/13 increase in liver mets - number & size
4/3/13 started TDM1
6/25/13 Praise God! Scan shows only one viable lesion and it's smaller.
10/8/13 MRI shows 1 large and two small tumors.
10/11/13 Ablation of tumors. It's in God's Hands.
10/23/13 Jesus and TDM1
12/19/13 Started trial of palbociclib & herceptin after scan showed growth of liver tumor and a questionable spot on rib.
2/6/14 CT scan - previous suspicious spot on rib probably damage from radiation - Praise God! MRI - over 200% growth in cancer in liver.
2/19/14 started Navelbine, Perjeta, & Herceptin combo.
5/2-5/4/14 hospitalized with very high liver function numbers, plus skin and eyes are yellow, plus urine is orange. Feel ok, so doctor not sure if liver failing due to cancer, chemo, or infection. Hospital gets numbers to go down and sends me home. MRI done in hospital reveals cancer shrinking - praise God!
5/6/14 - 5/8/14 hospitalized with no white blood cell count. Released when they go back up, @ 6 days after doctor gave me a neulasta shot.
5/16/14 - informed blood cultures done in hospital are back and that I contracted hepatitis e. Have to take ribavirin (anti-hep med) until liver function numbers are back to "normal" before re-starting chemo. Will probably go on veliparib and temodar this time.
5/26/14 - my birthday - GI doctor informed me that the hepatitis e was completely gone - I didn't even need the anti-viral meds! This is a miracle from God!
5/28/14 - started veliparib and temodar (compassionate use)
8/18/14 MRI shows 90% growth in liver tumors
8/20/14 start Perjeta, Herceptin, & Navelbine. Thanking & giving Glory to God for each moment.
9/22/14 - 9/24/14 Hospitalized with 102.2 fever and neutropenia
11/13/14 ER for high fever and fast heart rate. Got both down with IV antibiotic and fluids. Sent home same night. Thank You, Lord!
12/2/14 MRI shows progression in liver. Grateful to God that I still feel good.
12/11/14 Simulated SIR-spheres. Successful. Real thing (1st lobe) scheduled for the 23rd. Also starting Xeloda on 22nd for 2 weeks because it's synergistic with the spheres.
12/23/14 SIR-spheres in left lobe of liver. On Xeloda 12/22/14 - 1/4/15.
1/7/15 Receiving Perjeta & Herceptin while awaiting next course of action.
2/9/15 SIR-spheres in right lobe of liver. On Xeloda for 2 weeks (started 2/8). Still on Perjeta & Herceptin. Don't know what's next for me. :-)
3/25/15 Final read on MRI report - there are new and multiple lesions in both lobes of liver. Sigh. Praise God I've made it this far!
4/1/15 Started Gemzar & Herceptin. 1st week G&H, 2nd week G only, 3rd week off. Thank You, Lord, for this option.
4/15/15 Labcorp - liver enzymes in 200's. Appointment 4/22 with oncologist to discuss. Also, "radiation recall" in previously treated area? Very itchy. Need to discuss.
4/22/15 Enzymes came down. Received reduced dose of Gemzar only. No herceptin. Will get labs at lapcorp next two weeks since taking break for vacation purposes. Treat radiation area.
5/9/15 ER for severe abdominal pain. Constipation. Sent home with meds and advice to follow up with oncologist regarding jaundice and bilirubin.
5/11/15 Hospitalized for rising bilirubin and jaundice. CT scan reveals larger and more constricting tumors in liver.
5/13/15 Met with my oncologist. Bilirubin came down. If still down by Monday, I'll get chemo. If not, than I guess I'll see you all in Heaven. Praise God. Please pray, pray, pray.
5/18/15 Bilirubin jumped up. Trying lowered dose of Ixempra, with Herceptin. Oncologist is surprised that I'm functioning so well, given the high bilirubin. I have anywhere from 2 weeks - 2 months to live.
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Old 04-16-2015, 02:36 PM   #19
Lien
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Re: boyfriend d/x with stage 4 cancer

That is too much to absorb for one person. I can imagine the shock and fear both of you felt. I hope he finds his own personal way of dealing with this and I hope you find the strength to be his rock. But find yourself a rock too, as this is a tough ride you are facing. When I was first diagnosed, my husband could not deal with it at all, so I was glad that some of our friends talked with him and gave him support. I found that I had 5 fabulous girlfriends who were all there for me in their own way. Two of them accompanied me to doc visits, one took a day off to be with me when I was just diagnosed (she's a dermatologist with a busy practice) and was there for me when I had questions, another one looked after my kids when I needed rest and the fifth took me skiing. I also had two online friends who corresponded with me through email every day during my treatment. None of them had to carry the whole burden of supporting me, but together they formed my safety net that kept me sane. So perhaps find your own safety net, so you can be his rock. And of course we will chip in here. This is where you can blow off steam any time, day or night.

Hugs

Jacqueline
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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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Old 05-27-2015, 07:08 AM   #20
v-ness
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Re: boyfriend d/x with stage 4 cancer

thank you, everyone, for your responses. i only just came back after 2 months away. i appreciate everyone's thoughts. i am a loner in real life, and just wanted the kind of hope i found when i got diagnosed back in 2009. jon, in the meantime, had 1/3 of his colon removed at brigham & women's and started his chemo a month ago, adding Avastin in next week. his liver is littered with small mets and has one that is 8 cm in size. that said, he has only had small times of fatigue each chemo, rejoined CrossFit on sunday and bought hiking boots on monday! he is not in denial, he is living life with open arms and plenty of hope. i told him i'd have to induct him into the 10% club (10% of us have little to no SE's from chemo). although we should have been in italy the past 10 days, we cling to the hope that it will come true next may. he brought me calla lilies like those that grow wild in Cinque Terre for my birthday last week and healing Herkimer Diamond crystal ring while he carries a bigger on his key chain. he's never been religious, but now carries a st. peregrine medal i gave him, a little cross from medjugorje, and prays to st. jude. funny how you pull out all the stops when you're life is in danger.

i have courtney leboeuf's book here to read and to quote to jon since she was a powerhouse of hope.

valerie
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8/09 - IDC 1.8 cm triple positive, lumpectomy left breast
10/09 began chemo (taxotere & carboplatin) and weekly herceptin.
1/21/10 finished chemo, continued on herceptin every 3 weeks until 10/2010.
2/10 began 7 wks of radiation
6/10 mom dies of primary peritoneal ovarian cancer
8/10 got my last remaining ovary out
10/10 mammogram all clear
3/11 MRI shows 5 'spots' in right breast, largest 1 cm unidentifiable on US
needle biopsy proved the largest to be old inflamed cyst -phew!
7/10 switched to Arimidex
8/9 switched to Femara - allergic to arimidex
Femara made me lose hair quickly so switched to Aromasin
Aromasin made my hair fall out too and the bone pain was too much.
back on Tamoxifen 1/2013.
blood clot from trains and planes 5/2014 so on coumadin per onco for as long as i am on tamoxifen
tamoxifen was supposed to be up with my 5 yrs in may but my boyfriend was diagnosed with stage 4 colon cancer so i am staying on tamoxifen indefinitely because i want some ammo against BC, given the stress. lost my husband in only 10 wks in 2007 to stage 4 esophageal cancer.
cancer's screwing with another man i love
2/2016 - 6yrs in remission, off tamoxifen and off coumadin - yay!
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