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All TopicsForum: "Middle Age" 40-60(ish) Years Old With Breast Cancer → Topic: Pros and Cons of Tamoxifen

Topic: Pros and Cons of Tamoxifen

Forum: "Middle Age" 40-60(ish) Years Old With Breast Cancer —

Meet others in this age-range who share similar life issues.

Posted on: Dec 29, 2017 02:51AM

llwilson wrote:

I have read and read and read and would love to get someone's opinion on not taking to TAmoxifen. I'm 56, ER+, but my OncaType is 9 and I have just finished my radiation and feel great! I was low risk to begin with and the cancer was very contained. The side effects of Tamoxifen are absolutely terrifying for me. After finally surviving, being happy again, why would I torture my body to lower the risk of reoccurrence. I read someone say they'd rather lose their breasts than their hair. I feel like I finally have my life again, I can start getting the weight off and hiking again. All the possible side effects sounds like it will make life much worse. Looking for someone that is similar age group.

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Jan 20, 2018 09:02AM Sammy3 wrote:

Hi there -

I have been taking Tamoxifen for about 1.5 years now & honestly I don't have any problems. I think with any new drug, there is a period of time where our bodies get used to it, but then its just routine. I was not in menopause before chemo, but I am now (I am 46) and for me the worst SE was hot flashes. But I am pretty sure anyone going through menopause gets those anyway. I didnt read all the posts above mine, so I apologize if this was already asked/answered. But are you in menopause? If so you may be prescribed an AI and not tamoxifen anyway. Feel free to message me if you have any questions about tamoxifen.

Dx 10/2015, IDC, Right, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ (FISH) Surgery 11/12/2015 Lumpectomy: Right Targeted Therapy 12/9/2015 Herceptin (trastuzumab) Chemotherapy 12/9/2015 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 12/9/2015 Perjeta (pertuzumab) Surgery 4/29/2016 Lumpectomy: Right Radiation Therapy 5/31/2016 3DCRT: Breast Hormonal Therapy 7/14/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 10/9/2017 Nerlynx
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Jan 20, 2018 10:17AM - edited Jan 20, 2018 11:58AM by Faithonfire

This Post was deleted by Faithonfire.
Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jan 20, 2018 12:03PM Faithonfire wrote:

sorry about that!

Chalk it up to chemo brain but I posted the wrong reply in the wrong room!

Talk about a pantyhose tucking in your skirt moment (blush)

Sorry Sammy

I am off tamoxafin now but went 12 rounds of it on chemo before surgery and my side effects were severe.

I'm looking for alternatives for that one drug for longer term use and will let you know what's my choice when I get to i

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jan 20, 2018 12:53PM jaymeb wrote:

Sammy3

I've been on Tamoxifen since April of 2017, shortly after my mascectomy. Now, I had to do radiation, but we didn't know I needed to, so I got two opinions. Due to my positive lymph node, my RO said radiation would bring my chances much lower for local reoccurance. So, the RO wanted me to stop tamoxifen while getting radiation treatments. However, my onco said to stay on them. It's funny how we the patients can get two different answers. So, the RO said to keep taking the pills. Also, this delayed reconstruction, so my tissue expander had to be filled before radiation. Well, after treatments were over, six months to do the exchange which will be in February. Thank you Jesus!!!! They are a pain. As far as tamoxifen, I've been fine on it. The side effects are hot flashes, moodiness, and night sweats. However, I have not missed on dose. My phone goes off at 6:00pm everyday, or I would probably forget. This pill brings down a reoccurance by 50%, I think. I'm premenopausal, but I think I'm going through menopause.

Sammy, did chemo, or tamoxifen put you in menopause? Have you ever missed a dose? I see you had all treatments before hormone therapy. Is that the norm to do after treatments? I wonder why I was put on it right after surgery, and not after radiation. I have quite an appetite, especially for sweets, therefore weight gain.😂😂😂😂😂.

Have any of you ladies gained weight on tamoxifen? I asked my onco if that was a side effect, and he said only five percent gain weight. So confused. Sorry to be so lengthy. I'm very much a talker, which I'm sure you ladies saw that quickly.

I would love to hear some feedback any hormonal therapy. Thanks.
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 20, 2018 01:06PM jaymeb wrote:

Pupmom

Thanks for your response. I knew the onco test could be used for up to three positive nodes. My score was 14 as well, and my tumor was on 1.3 cm. So, we do have the same stats. That's great you are over six years out. That makes me more at ease, since I always have that cloud over my head of reoccurance. Four more years until that 5 year mark. Hope I make it. I forgot, did you do radiation? Also were you premenopausal, or postmenopausal at diagnosis? Are you diligent not to miss your pill everyday? Thanks for your patience with me.

Let me tell you ladies, I learn much more from these forums than googling.
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 20, 2018 01:10PM jaymeb wrote:

pupmom

So sorry, I forgot you told me you did radiation. Another side effect with tamoxifen is forgetfulness. Sighhhh.
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 20, 2018 09:58PM - edited Jan 20, 2018 10:05PM by pupmom

Jaymed, I was postmenopausal, age 61 at diagnosis. I started out on Aromasin, but was switched to Tamoxifen because of joint issues. However, I don't think those issues had anything to do with Aromasin. My femurs became necrotic and basically disintegrated. Nobody knew what had happened to me for a year and a half. I had spine fusion, as the doctors thought that was the source of my horrible leg pain. That didn't work, ugh. Several docs were scratching their heads about me, until my primary care doc thought to send me to a Rheumatologist. Well, that doc examined my hips and found, to his horror, that they were completely immobile. (Guess the walker and wheel chair I was completely dependent on didn't give anybody a clue!) Anyway, he ordered a simple hip x-ray and that showed what was going on. Two years and two hip replacements later and I am doing fine. That's probably more information than you wanted. I can be long winded too, hahaha!

Edit: Although docs don't know what cause my necrosis, DH and I suspect Zometa. I started having the severe leg pain after going through several Zometa treatments. Zometa is known to cause jaw necrosis, but there isn't a clear connection with hip necrosis. To me it was just too much of a coincidence. I mention this as a warning if that treatment is ever recommended for you. However, if it was the cause that SE would be incredibly rare, so not much to really worry about.

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Jan 21, 2018 01:22AM Sammy3 wrote:

Hi jaymeb -

I did my treatments sequentially (well I had 2 lumpectomies). So I did surgery, then chemo, then another surgery, then radiation, then started tamoxifen, (still on herceptin tho) and then after herceptin did Nerlynx. My only overlap was the tamoxifen/herceptin. I am not sure why my MO/RO had me not start it until Radiation, but that is what I did.

Menopause for me came on fast during chemo. So I went from a younger 40-something who was totally regular every 28 day cycles - to boom - nothing. Haven't had a period since. So I think my hot flashes & stuff were more severe as I had no time to ease into menopause, if that even is a thing. I have gained weight on it. I don't think I have ever missed doses - its almost just routine now. I am not sure if I have gained (not a ton, but just cant lose that last 10 pounds) from menopause or the drug. Who knows if I will ever know.

Dx 10/2015, IDC, Right, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ (FISH) Surgery 11/12/2015 Lumpectomy: Right Targeted Therapy 12/9/2015 Herceptin (trastuzumab) Chemotherapy 12/9/2015 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 12/9/2015 Perjeta (pertuzumab) Surgery 4/29/2016 Lumpectomy: Right Radiation Therapy 5/31/2016 3DCRT: Breast Hormonal Therapy 7/14/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 10/9/2017 Nerlynx
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Jan 21, 2018 01:52AM Faithonfire wrote:

hi ladies,

I had a good morning finally after getting meds increased for pain and muscle relaxer so that will do fine until I get these horrific drain tubes out in 4 days YAY!! then I get to use my lydocane patches again! It's the nastiest gooey sticker that never felt better exactly where it hurts most! Can you tell how much I miss them yet?

Ok, I have an expander question for anyone who has or had them- before they are inflated again after initial insert why take out drains before filling again? I was told they would be doing both next week and it took a while to dawn on me this could be a bad idea but so is leaving open tubes on sides for weeks in my opinion! I just wondered if more volume added to expander would cause more whatever my body makes and needed to drain fill up in there too? I'm guessing it will dissipate in body as I heal anyway but just thinking through the logistics of these new additions, and trying to find a way to be comfortable once I am fully contained and what size that will wind up coming out to the moment I am done with reconstruction completely!

I protect my grafts like I did my babies it's funny I swatted my mom for dropping a book in my lap with my hand and she laughed and said sorry I forgot about the twins! I told her she won't be getting any more grandkids out of my tattered hide and she smiled and said I got you back and you will always be my baby no matter how many you have! Mom always did know how to melt me!

I have decided to make that my giant celebration after I heal up and finally let a big party be thrown for some shameless promotion and fundraising to take place in the town that made it all possible for our family! I am long overdue for lots of meeting people and all that so I have just given my nod to let the planning begin as I get ready to do what I do best and know that I always had it in me! Not anymore now that I am cancer free! My doc called before she left to share the great news!

I am jumping up and down waiting for my final reports presentation containing all my stats next week so I think they are girlfighting over who gets to tell me what first since I see them on same day usually we do this a lot lately so I keep my chin up as the rest of me gets poked into place! We all have a lot to celebrate with what we pulled off and I'm NOT letting anyone take that away by making me too upset to enjoy such hard earned victory!

My weight dropped a bit again with the stress Fallout but not as bad this time I'm only 10 under and keeping a food journal for my reconstruct doc because she's new to the team and wants to contribute so I'll oblige happily as we watch the results blow her brain up too then we all get to play 20 questions with what we see together now vs a non mutant! I'm eating a LOT even when I don't want to and it just won't stick when I am stressed this much. I did gain a total of 27 lbs on chemo with tamoxafin 12 rounds but haven't had it for over a month now and finally feel thinking clearing up so I am counting my blessings that it was only a side effect but a big enough one that I will refuse to take it EVER again! There must be something better and I will find it!

Until then I am on a clothing strike wrapped up in my silk robe and munching cookies in bed with a space heater thanking my lucky stars that I don't have to go anywhere today in all that snow



Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jan 21, 2018 02:51PM jaymeb wrote:

Hi Faithonfire

Did you have four drain tubes in? I remember you saying that yanked a couple out. And that is the correct word, YANKED. Mine were too, it was so fast. I can tell you, you will have so much relief when they take the other tubes out, promise you. I hated them. I'll do my best to explain the issue expanders with my experience.

I just had a unilateral mascectomy on my left breast. Well, I had two drain tubes, one was yanked out within two weeks, the other a week later. This was end of April. The plastic surgeon wanted me to heal before filling my expander. So, she started filling them in early June. I went every week, and she would put so many CC's of fluid in. It has to be gradual. I would put alloderm on my breast with a bandage over it an hour before I got filled. I'm going to remain a C cup. So, she overfilled it by a little to make room for the final implant.

Well, before I got expanded, I found out I had to have radiation. My PS was surprised, as she didn't see it on her computer. So no communication from my onco, and RO. I'm not sure why, or how it works, but radiation can mess up with the plastic surgeon. She was not thrilled. So, she had to expand me a little faster. Once I was completely filled, I had radiation shortly after that for six weeks. Both the RO and PS said my expander would not affect radiation, and vice versa. My breast looked exactly the same, my skin held up well.

Now, when radiation is completed, you have to wait six months before the PS will do the exchange. Not exactly sure why? If you know, or anyone on the boards knows, please share. Faith, are you having radiation, do you know yet? I'm not sure if I explained this well, I just shared my own experience.

I'm so glad you're having a celebration. Good for you, and don't let anyone take that away from you. As we know, breast cancer is no picnic!!!!! I love the relationship you have with your mom. My mother stayed with me almost a year, and comes back and forth now, as she's only two hours away. We're very close, and don't know what I would do without her. She's coming back soon to help me when I have my exchange surgery, and reconstruction on the other breast. My daughter is helpful as well. Respond when you can.

Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 21, 2018 02:56PM jaymeb wrote:

Faith, I wish I could have the luxury of gaining weight. I have to lose 25 pounds. It sucks, and is hard, especially with tamoxifen.😂😂😂😂
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 21, 2018 02:59PM jaymeb wrote:

Pupmom, and Sammy3


Thanks for your responses, and answering my many questions. Sammy, I was wondering, do you still have any side effects from chemo

Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 21, 2018 05:47PM Faithonfire wrote:

hi and thanks jaymeb

I was wrong about not having to go anywhere today but glad I got out a little on a day trip to the frozen beach! I only spent a few moments outside and promptly froze my face off so had fun watching sunset from heated car instead!

My son started being mean in text early this morning which was his only way to let me know he missed me too. We always used to enjoy our mornings together so it hit me harder than usual since my husband the spineless won't return my calls or respond in any way since hanging up on me in the hospital! ANY bad vibe you can send such a heartless bastard have at it everyone and I hope he winds up arrested this weekend! How low can a man stoop to fail to honor his own word?!? To fail to even try is a strategy that will no longer profit him in any way!

And yes jay I did wake up to 4 drains and a giant ace bandage taped around my chest like a corset that nobody could touch except doc who left it on for a week did my unveil in her office and we were both impressed how well my skin held spacers the extra drains really helped the pressure evenly dissipate and was healing fine now with just glue straight across nipples instead of under so scars will be smaller after grafts are replaced on 2nd surgery with permanent implants..

Lot of that will be weight based filling in later before we are ready to decide on what size I will wind up and if they can convince me to do radiation at all based on my final reports coming this week!

I know I am fighting so hard is I'm not sure lifetime proven benefit is worth the risk to my implants or grafts will be. We got almost total response with chemo so I am pretty sure is time to stop putting my body through hell for not much proof it's worth it! I am not sure what other horemone therapy options I have yet but have been doing a lot of research.

I want my drains out SO much now I still can't sleep on my sides or shower yet but it beats being itchy and no getting grafts wet at all until reattach.

Not as bad as seatbelt leaves on a car accident or a actual c section so I can't complain as I feel it getting healthier and attaching well.

I am doing my best to make the most of my days no matter what but to not have any information supportnor even communication with someone just because you are too sick to stop them has become my living nightmare and even when I find the courage to call their school to ask for help and advice their father refuses to provide... as he promptly blew me off indicating he won't help us and that's all I can expect from our state public high school. I told you the blame wife for everything excuse is VERY popular among people like that!.

It will take nothing short of my nod to yank the rug out from under his feet so that is my only option now to call and report it. I honestly don't care what happens after that he won't get away with pretending I dont exsist anymore! That is a real reason to celebrate too!

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jan 24, 2018 08:21AM jaymeb wrote:

Hi Faith




Think of you everyday. How are you feeling? When do you get the drain tubes out? Did you say your no good hubby is with someone else? Sorry about that. Screw him, I just hope that somewhere down the line, you can have a close relationship with your kids. As we know with our history with BC, life is short. Also a serious illness should bring loved ones closer together. Negative crap should be put aside when there's a loved one is sick. Right now, you do not need negativity in your life. Still praying for you sister.🙏🙏🙏. I'm here for you.
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 24, 2018 08:23AM Moderators wrote:

((((((faith))))))

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jan 24, 2018 08:41AM BarredOwl wrote:

Hi jaymeb:

Faithonfire has been posting recently in another thread, including today:

https://community.breastcancer.org/forum/142/topics/757861?page=1#post_5133461

BarredOwl

Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Jan 24, 2018 11:42AM jaymeb wrote:

Hi BarredOwl

Thank you. I was checking to see about another lady that was on the Stage 2 sisters thread, and just found out I call pull her username, and pm her. Didn't know that. I just want to see how everyone is on the threads I'm on, especially if they haven't posted for awhile. Thank you so much. Still learning, and overwhelmed by how many threads there are. Whew!!!!
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 24, 2018 12:12PM Faithonfire wrote:

hi jaymeb, Barred owl,

I'm hanging in there after my surgery Jan 9 and get my drains out tomorrow YAY!! I've been popping around a few threads as I try to cope with everything happening to me lately.

I'll do a bigger yay post tomorrow night after all is said and done tomorrow to evaluate final reports and get me a damn shower because it's been baby wipes and lots of lotion since surgery but my scars are healing very well and we check grafts tomorrow for clear to keep or not! I'm nervous but thinking of you all to keep me strong and brave enough to keep me out of jail when they yank my tubes I won't knock them out on impulse!!

I'm DONE being in pain and forced to measure my calorie intake or body juice output!! It's vile and very painful so I just need to get through this and yell about it later!! Thanks so much and keep me in your prayers tomorrow around noon

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jan 29, 2018 07:36PM jaymeb wrote:

Hi Faith

It's been a super busy weekend. My daughter had her 15th birthday, and 20 of us went to the Cheesecake Factory. I went earlier to get a seat, and almost a 4 hour wait!!!! The place is always busy, and will not take reservations. I drank wine while waiting, and had a little too much. Hehe. I was so stressed, and don't handle stress well. On another note, how are you? Did you get those annoying drain tubes out? Believe me, I couldn't wait to bathe either. Felt like a new person. I don't know if I asked yet, but are you having the reconstruction?
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 30, 2018 01:56AM Faithonfire wrote:

hi jaymeb,

Yup I’m doing a lot better now I got my drains out Thursday and finally can shower after 2 weeks! I was one stinky ball of grumpy until then and pretty out of it with the pain meds that I just slept until Sunday!

I LOVE the Cheesecake Factory that’s a great birthday choice you awesome mom!! and there’s nothing wrong with letting loose a little after all the stress you are living through! I used to drink but can’t with the meds I am on now and survive so I don’t miss it at all really. Small trade for getting stable enough to not miss it because I feel better with meds than drinking. it was never the same feeling for me after having kids for some reason so I stopped for almost a year before I got my diagnosis trying to eliminate anything in my diet that might be causing my symptoms.

My tumor and organ removal was done at the same time in surgery as reconstruction on the 9th so my plastic surgeon and my cancer specialist shared the table for about 8 hrs total. I had my nipples grafted just above my c section scars and it is gong great they have taken well and shed showing color and texture are better than anticipated! I go back for another check on those in a few weeks and they will be put back in place when final implants go in about 2 months from now.

I had my surgery scars go straight across armpit to nipple and won’t see over half of it after nipples go back in place so I couldn’t be happier with her choice knowing no bra will rub my scars and under it looks just as natural as clevage so I am very relieved we got to save so much of me and I am pioneering the procedure so I am honored to have the opportunity and agreed to be studied for 5 years in several studies now.

I’m still working on talking to school about my freshman’s failing grades since I have been in treatment. Art dept knows our family best and my husband won’t return my calls or texts since I guess we talked after I woke up from surgery on the phone but I have no memory of it or crying for a while after that until I got more meds then slept it off. Everyone who sees how much pain he puts me in at my weakest moments wants to see him reap what he sows! Soon enough but I don’t want revenge I only want them to get the help they need to heal and not fall into addiction or worse!

I know soon I will look and feel better than I have since I got married and it’s exciting to think of living a happy healthy life. I hope it is together as a family but I have no control over what my husband chooses to do so my future no longer his to manipulate! I will always be the mother of our children, I have 3 ages 13,14,17. They were always very close with me until my world shattered. I’m not ready to start understanding what happened yet but I am glad I don’t need anything from him directly to find closure and be at peace with my second chance at a happy life.

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jan 30, 2018 02:37AM Faithonfire wrote:

oh,

I forgot the official reports but my 3 sentynl lymph nodes showed total response in all ten sections and my largest armpit tumor went down from 5.5 cm to 8mm!! The total tumor margin was 8cm I think because the sack it was in stretched out to the diameter of a pin instead of a lemon and that’s how they measure it I guess. The whole organ structure from both sides are being studied for progression in pathology and it is best donation of unusable organs I could manage so what they learn from it will help find a cure one day.

They were floored that I was that clear from chemo alone that they are having a very hard time convincing me I need radiation at all. It’s too risky to my implants and grafts without any assurance that it will actually prevent future cancer of any kind with their current methods. The industry study being conducted now on this issue is what I would be basing my choice on so I don’t exactly need permission to be a part of that one by refusing to be fried just to prove it is harmful! The risks of harm we are expected to accept before agreeing to radiation is far greater for me than any data I have been shown about the benifit being proven to be worth the risk! I’m just too fed up and worn out to be poisoned any more as I am told it will all make me better! I think one method is enough either radiation alone like my mom had or chemo like I just did. Both seems excessive and expensive with more permanent damage than nessicary to patients based on decades old data of older treatments!

The hormone therapy recommendation will be much harder to negotiate but tamoxifen pills is the standard choice. I had very bad side effects on it during infusions and am looking for another choice without loosing my overies! They are disconnected but healthy and working fine so I am keeping them. I can’t have any more kids but I got to keep all my organs at least! My mom is on armidex and didn’t mind it.

I’m so excited my hair is coming back in well my eyebrows came back dark but my hair is white and no armpit hair at all and that’s the only thing that didn’t grow back but no complaints from me HA!!

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Feb 1, 2018 04:05PM jaymeb wrote:

Hey Faith

Yeah, I'm not supposed to drink much at all, according to my onco, no more than 3 glasses a week. I usually don't drink during the week, and I have tons of wine collecting dust on my wine rack!!! So, I usually wait until I'm out with friends, and have two, or three glasses. I tell myself that equals my limit of three during the week. Uggggh, I'm so tired of meds. Before I had Reece, I wouldn't take a pill for a headache, well after I had her, I had postpartum depression for six weeks, then several years later, diagnosed with chronic depression. The docs think there could be a correlation with my earlier postpartum. Not sure. Wanted more kids, but didn't work out. Maybe God thought one was enough for me. So, I envy moms who have more than one. But then again, my 15 year old is enough at times for two kids😂😂😂. I take klonipin, lamictal, zocor( for cholesterol) tramadol, when needed, ambien( don't think I could live without it. And supposedly Ambien is not addictive!!!! What a lie!!! Oh, and tamoxifen for 10 years. I'm a walking drugstore.




So glad you got your drain tubes out. I know you feel much better. Now as far as radiation goes, does your onco want you to do it? If so, why? In my case, I didn't need chemo, but after two opinions, had radiation. So, I had to get my tissue expander filled pretty quickly. If I would've had chemo, I doubt I would have radiation. Not going to lie, it does irritate skin, but on me, I was very burned under my arm. But, I didn't feel it, due to the numbness from my mascectomy, and 13 lymph nodes taken. What I'm irritated about is waiting six months to get this damn expander out, and get the final implant in. Then, the other saggy boob will be lifted to match my implant. That will be a two hour surgery, then another two months, nipple reconstruction. What a joy breast cancer is🙄🙄. I just hope it turns out good, heard good, and bad results.

Great to hear your hair is growing. I've heard, and seen that the hair comes back grey, or black. I've also read that many women's hair comes back curly, and better than it was before. I know a young college student who shaved her long dark hair in supporting breast cancer. What a trooper!!! I can't think of any young woman, no cancer, who would do that. Now, her hair is growing back, it's short, and hasn't grown in months. She's taking it in stride, and says "oh, well" I would do it again. At that age, I was too vain.

You also mentioned tamoxifen. Are you going to take it? I think that's the only hormone therapy for premenopausal women, not sure. I know with postmenopausal, there's more choices, but, of course, with it's own side effects.

Faith, I'm sorry to hear about your daughter not doing well in school. Now, when it comes to grades, Paul, my ex, and I are strict about that. She's a freshman, and knock on wood, doing very well. What worries me, is she has a boyfriend. She thinks she's in love. Of course, I tell her she will go through many changes with boys, and she doesn't want to hear it. When this ends, she'll be heartbroken, and I worry she might get sidetracked. Now, she's very strong minded, and stubborn. Why is it teens can be hard??? I miss those baby, and toddler years. I know you love your kids, and I think you will be able to be close with them again. Do you think seeing a family counselor will help? Damn that husband of yours. I know I shouldn't say that. Can't help it!! Sorry I've gone on and on, you're easy to talk to, well write. Keep me posted. It's midnight, and still wide awake!!! I'm also on the insomnia thread some. That one is busy. Hard to keep up.
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 1, 2018 11:53PM Faithonfire wrote:

hi jaymeb,

Thanks I’ve been having a real hard time regulating my sleep too due to all the meds and I look forward to not needing pain meds one day but I’m glad I went with plain morphine because it’s easier to step down and stop. The vallium I will probably keep along with the marinol to help me through recovery and get my weight back up. Onadstron was the first anti nausea we used and it didn’t do much to help compared to other options.

My onco and I meet next week so she can get her turn to weigh in on my final reports but I had a much better clinical response than anticipated so I would LOVE to hear her pitch for radiation only because I did not get a total response and that is the industry standard recommendation currently given as the actual industry study is underway to determine the validity of that old information at those doses!!

My mom chose radiation only because she had gone through chemo for colon cancer 5 years before and would rather die than endure that treatment again! She was also a stage 3 but only had a lumpectomy on her left with 8 lymph nodes removed. She said radiation was MUCH better than chemo so I’m still a little upset I didn’t have that option or I would have NEVER done chemo if I could have survived without it! One day I will solve the mystery of why we cancer patients are forced to go bald still when it’s a very fixable drug side effect but far less profitable for all the ways to extort it linked to the healthcare industry like cranial prosthesis outlets which is just a seriously overpriced wig shop!! I had more respect for myself wearing a cheap Halloween wig knowing how many careers thrive on the misery of a totally unnessicary and socially devistating side effect!

I don’t need anyone’s permission to stay ahead of the trends of abusing patients for profit so I passed on the formal study option of not knowing if I receive actual doses of radiation as I play along! I’m just NOT willing to incur that level of indisputable risk for lifetime advantages not proven as clearly! My mom and brother are mad that I won’t do it but it’s not their risk to live with so they respect that begrudgingly.

I hate to have to point to previous examples of this fight in my medical history but they all know I am right after the mesh implant fight to save my life with the birth of my son in 04. They told me I would die of the hernia if I refused the implant and that forced my choice to use only my own extra body material to repair the hernia and that became the industry standard choice for hernia repairs after enough deaths were directly linked to mesh implants in the following decade!

Somehow I told you so just didn’t seem appropriate so I will just continue to lead by example and let the rest catch up after they see my results!! I’m used to being called crazy, too bad it does not mean I am wrong!

I am coming to terms with the loss of my marriage by going to weekly therapy but even my PhD is at a loss to know what to say to me in my current situation so he wants to add another kind of therapy from a female also for surviving abusive relationships and abandonment recovery therapy. Don’t know how well I will do with that so still researching options.

The most valuable advice I have received so far on how to handle the drastic changes in my husbands personality and our total loss of communication was to mourn it as a death. The details of events that he did after kicking me out don’t matter enough to endure the pain of confronting any of it since it can’t be changed now anyway. The MAN I love and married is no longer his dominant personality left intact due to the permanent brain damage caused by his addiction. It shows up in mri scans as large holes in the brain and it rewires permanently as the brain slowly dies. I cannot extend the trust his former reputation earned him with me because he no longer honors his own word or vows and hides like a coward. It is so painful to endure only my faith sustains me through this. If he refuses to get the medical treatment and therapy help he needs to participate in completely to save our family then I cannot stay married to him. I have received blessings from many of my family’s churches that have kept me on their prayer lists under my maiden name since I arrived that will absolve me for having to take legal action to protect my family from the evil that has consoumed my husband and left him only a shell of a man with no honor. I was abandoned and betrayed for being sick and God has led my every step through this nightmare so I understand that I do not have to endure abuse from a man who broke his vows to me. What he has put me through just for loving him is unspeakable and I used to believe I could escape the shame it caused me by masking it as blind devotion to my spouse. I am lucky I survived to realize that in time to beat it! My ability to adapt is amazing and I’m just getting started!

I am the first one in my entire family history to get a divorce but everyone had made a point to reach out to me and assure me the shame of this is NOT mine to bear. I restored a rift in our family history that lasted almost a century with our cancer genetics project and they all wanted to show their gratitude by supporting my choice to not stay married to an addict. I am too important to them to reconnect with that I don’t need to worry about my safety or security by getting full control back of my own life. I will see to it my kids receive the same opportunity after they pass a drug test!

I know this is the right path forward to a healthy and secure future. I can’t have that married to a junkie who hurts me to extort my pain as much as he enjoys causing or bragging about it to other abusers as they trade techniques! They will all land in the only society designed to accommodate abusive men that violate laws...prison! It’s the only option for people who refuse therapy so it will be interesting to see him sober up and face the truth.

I will have a knockout body fully repaired on HIS dime as he promised in court but never did!! I will be so happy starting my new business without him that I will devote the rest of my time to repairing my relationship with my 3 kids and let him taste the silent treatment without the ability to change his choice to start that vile tactic after he lays eyes on me knowing he will never touch me again. Every time he watched me without me knowing is his own disgrace! I have nothing to hide and never understood his obsession until the addiction changed his personality that much so fast.

The loss of his original personality was the hardest thing to see along with the physical decline and it’s truly revolting! I don’t even care if he is cheating on me because he has absolutely nothing I want physically or emotionally at this point because he is so contaminated with failure it makes me recoil at the very THOUGHT of him touching me! Shame too because we always had such a fantastic sex life it was the greatest equalizer in our relationship and almost the death of me on one occasion too many. I was pregnant 4 times in 5 years until my last child almost killed me busting out so I had to get my tubes tied because he refused a vasectomy!

Feel free to let loose and be creative with hating him for all he has done to me, my family and friends try to keep it out of earshot also but it’s ok I am angry too just not in a vindictive way, it is more true grief at the death of the attributes I loved about him enough to endure this rapid decline as long as I have. I will always love the man he used to be but he can no longer be that man and hide his addiction and secret lifestyle so that’s no longer my daily problem. Let him reap as he sows and I will transform into the healthiest version of myself I have ever been!! The last thing I need is another relationship to replace his role in my future. If I ever find someone who loves me as much or as well as I love myself I would consider it but I have enough memories and imagination to last a lifetime

My kids will learn quick that they are no longer dealing with a dying crying pushover and will make it through the therapy process just fine with me. Can’t refuse until age 18 anyway so we will go on result based options of cognitive behavioral therapy instead of medications. They aren’t designed for minors and I don’t like the idea that pill popping solves social problems without training.

I hope he chooses to be a part of that too one day but won’t count on It unless it’s his only option to avoid jail! I’m sort of hoping the next call I get from him will be begging for bail money super bowl weekend!!

A little divine justice would do WONDERS to all current perspectives of integrity as I fail to respond and know he is finally as alone and uncomfortable as he deserves to be for what he has become. It’s liberating to know the pain someone used to get off on causing you will soon be their own without having to lift a finger. It’s not that I want him to feel pain himself as much as I want him to feel the level of pain he inflicted on me in my medical condition and what kind of monster that makes him. That will haunt him forever as well it should


Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Feb 12, 2018 05:37PM Faithonfire wrote:

hi jaymeb and ladies,

I am finally feeling a lot better and have had had a much better clinical response now that we got rid of my necrosis around edges and middle of grafts now but it was making me fight way too hard physically to avoid the emotional setbacks that follow and often feed on the state of decline.

I went back in hospital for minor surgery last week and still managed to keep the nipple grafts but they will most likely be flat areola with a bit of additional skin if needed for dimension but will loose about 1/8 inch around margin anyway so it won’t matter much once in place at full size.

Problem was my body just didn’t like the glue and it didn’t seal as well as hoped on right because temp implant fill plate was pushing directly on scar line under filled and causing pressure points failing to heal so she just trimmed and reset scar line and bottom piece was fully healed on inside so very positive signs and only backed me up a week or so for completion surgery that will look fantastic and advance the procedure technique from what they learn from long term study of my profile.

I guess fighting off dying tissue makes me fight so hard on every level it was surprising to see the difference documented through my healing progress and feel such tremendous relief in transforming my life with the best therapy in the country with my medical team that I am now gaining the strength and courage to face the world again (Bald or not!!)and make my place in it without needing the validation of a failed marriage to be complete as a woman or mother.

I look forward to sharing that with my kids one day soon so I will send a care package to them for Valentine’s Day and hope my lawyer delivers the divorce paperwork around the same time. He can ignore me all he wants after that as long as paying his debts to me is his NEW first priority! It’s been almost 2 months since his last response to me. I have no other way to protect my rights at this point through no fault of my own. There is nothing else he has that I want at this point, but I don’t think I need a permanent restraining order. I just don’t have enough information to make an informed decision on that yet. I want to give him the benifit of doubt but my instinct swears I will regret it

Wish me luck and I hope you all have a great Valentine’s Day even if you don’t receive all the love you deserve from the people in your daily life! Just remember how many people you have inspired with your kindness and caring and know it will always find a way back to you when it’s least expected! I hope it is when you need it most!

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Feb 19, 2018 10:20AM jaymeb wrote:

Hi Faith

I've been missing in action, and just now reading your post. It's funny, I was talking to my ex-husband today. I might of mentioned, we get along great. I left five years ago, and regret it. He is moving on, but will do anything he can for me. I told him about your situation, and he even thinks your hubby is selfish, and he not being by your side, no matter what is unthinkable. When I told him many women have had their husband leave them with breast cancer, he called them scum!!!!!! Paul pulls no punches. If I was still married to him, he would have gone through this with me. Actually, he was right there with me, and supported me. I did gain weight, and he still tells me I have my looks. He didn't even have to be by my side!!!!!

I'm so glad you're filling better, but my heart goes out to you with your personal situation. Are you going to get a divorce? Did you send Valentine's gifts to your kids? How is he responding to you now? I pray for you everyday. Even though your children are being the way they are, I do believe they love you. YOU ARE THEIR MOTHER!!!!!!!! Nothing will change that. They need you!!!! However, you still have to take care of yourself. Remember, you are a strong woman. You've got this, and it might not seem like it, but their is light at the end of the tunnel. What other threads are you on? I have my exchange surgery next week. Finally getting rid of this horrible Barbie doll boob!!!!😂😂😂😂
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 20, 2018 09:36AM jaymeb wrote:

Hey Faith

Wondering where you are??
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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