Starting Chemo March 2015

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  • Lovemylab
    Lovemylab Member Posts: 80
    edited July 2015

    was in the chair today for taxol/herceptin and MO came to discuss my vomiting/ D with and without exercise. He says" that is socially unacceptable" when I told him I can't walk 3 miles w/o pooping. I said I know, pls fix it. He ordered lomotil and said to take as much Imodium as I need with it. Hoping for a better week and hopefully I won't fall on my face as these are both opioids! I had an episode there of sudden nausea then had D and nurses were like TAKE THE LOMOTIL so I had one 5 hrs ago and so far so good. My walk tomorrow will be the true test. Hang in there everyone.

    Maureen

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  • pboi
    pboi Member Posts: 663
    edited July 2015

    Good to hear, Whitney!

    Sloth...that's so funny! Thx for sharing that.

    Bekah...9 hours is a long time! Brave of your hubby to do the IV. I was always terrible at it. Hope you're feeling better now. Love the hair!

    Mary...I too had my RO consult during chemo.

    Tutti...missed seeing her here 😊

    PB

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  • KBeee
    KBeee Member Posts: 5,109
    edited July 2015

    Allison, They discontinued it as soon as I was diagnosed with the recurrence. When I had my re-excision, I had them take out my ovaries at the same time. After radiation, I will start an AI.

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  • ninjamary
    ninjamary Member Posts: 306
    edited July 2015

    Bekah - omg all that hair! Love it!

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  • IndyGal35
    IndyGal35 Member Posts: 340
    edited July 2015

    Awesome news, Whitney!!!!! What a relief!!!!!

    I wonder if the cholesterol issue could be related to the chemopause. I know that testosterone levels tend to rise in women during true menopause, and higher testosterone is also linked to higher cholesterol levels. I'm hoping that it will self resolve for you as your energy and appetite keep returning and as your girly hormones start correcting too.

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  • ThePrincess
    ThePrincess Member Posts: 424
    edited July 2015

    Maureen- hope that works for you!!

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  • Trvler
    Trvler Member Posts: 3,159
    edited July 2015

    Kbee: I have frequently wondered about your history and keep meaning to ask you about it all. Is there a post you can link where you have told your whole story?

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  • pboi
    pboi Member Posts: 663
    edited July 2015

    KBee...how did the ovary removal go for you? Did you have a lot of side effects? Just had my first Lupron yesterday, but hoping to schedule oopherectomy in September.

    PB

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  • Trvler
    Trvler Member Posts: 3,159
    edited July 2015

    Here's my hair finally growing:(sorry for the big pictures and repeat for those of you in the Taxol group)

    image

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  • Trvler
    Trvler Member Posts: 3,159
    edited July 2015

    image

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  • Trvler
    Trvler Member Posts: 3,159
    edited July 2015

    image

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited July 2015

    That's a lot of hair Allison

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  • KBeee
    KBeee Member Posts: 5,109
    edited July 2015

    PB, I had laparoscopic surgery and found it to be a breeze.

    Allison.....here goes..... My story…Apologies in advance...it's a LONG one! I was diagnosed in 8/2013 after finding a lump while we were on vacation. Turned out to be IDC, 1.9 cm, node negative. I had BMX with TEs placed late August of that year, and did 4 rounds of TC chemo, despite an oncotype of 16. I wanted to be aggressive due to age, and MO wanted the same. I started Tamoxifen that December and took it as prescribed. I had reconstruction in the winter and then fat grafting in the spring. After fat grafting, I developed a lot of lumps and bumps. BS thought it was just fat necrosis but did agree to biopsy one. No fat necrosis; just came back as inflammation. My next appointment with MO, I brought up the lumps (I had more now) and expressed that I'm not so concerned that those are cancer, but am concerned with how I will be able to find a new lump with all of these others. He rolled his eyes (literally) and said, "you need to stop being such a worrier. If it goes from a grape to a golf ball, call me. If not, ignore it. You are not at risk for recurrence." Needless to say, I never saw him again. I could not transfer within the practice, so I went a few hours away to Mayo since it was just MO visits every few months. They monitored those with ultrasound. I was pretty excited in late 2014 to be done with all surgeries, and everything else…my hair was back, all was good. My Christmas letter had the haunting last phrase that my goal for 2015 was to stay out of the OR. In January of this year I started having nightmares that I was back in chemo, this time doing AC. I had nightmares before my first diagnosis too. Late January, in the shower, I found a lump near where my original lump was. It felt the same, but could only be felt when I held my arm up a certain way. Called BS. He had me call PS to see if it was from reconstruction. PS thought is felt just like scar tissue because that's where he splits the pec muscle. I told him I needed to sleep at night and he understood and got me in a few days later for an excisional biopsy. He said it looked and felt just like scar tissue, not to worry, he'd call me when he had results. I was at work a few days later when I got the call that it had returned. The pathology was different this time, and a bit more aggressive. After consulting back up at Mayo, I knew I had to do most here because of my kids, so BS was able to get me in with the oncologist I wanted. BS did reexcision, and based on what Mayo had recommended, tried to find a sentinel node (this is not usually done after reconstruction, because it's not accurate, but Mayo said it occasionally works). He could not find the sentinel node, but he did feel around and felt something hard which he thought was a node. Took it out and it came back positive so he took out 13 more. Nodes came back negative, but pathology came back that the "positive node" was not a node at all. They did not know what it was and sent it to Mayo. Came back with no lymph tissue, no breast tissue, just another IDC tumor happily growing in the soft tissue several inches away from the original tumor. Little fucker. No one has any explanation for that one. I requested oncotype testing even before that surgery. Came back high at 40. We didn't send the 2nd one so not sure what second one was; it's Ki67 was double that of the first one…I don't even want to know how high that one would have been. Hence the trip back to chemoland, which I wanted anyway since I knew it was pretty aggressive. Rads is next and then an AI since I "failed" on Tamoxifen. I had them take out my ovaries when they did the reexcision to save me a surgery later. Recovery for that was easy. I felt great in just a coupled days. If you made it this far, I hope you had a bowl of popcorn or a candy bar or something! ! So that's the scoop. Hoping to be rid of it for good this time. 99% of people in my situation have no recurrence. I was the 1% (so the next 99 of you reading this statistically, should be safe!!!!!) and am glad I was persistent in getting the biopsy and oncotype testing because we found it early and treated it aggressively. Again.

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  • shaz101
    shaz101 Member Posts: 718
    edited July 2015

    Whitney, great news I'm very relieved for you.

    Maureen fingers crossed I hope that helps.

    Katy,superb cute video and I'm impressed by you uploading one. I haven't even tried.

    Bekah, beautiful hair.

    Allison,wow that came in fast. I'm still bald.

    Karen, I'm so glad you listened to your body! How terrifying

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  • Lovemylab
    Lovemylab Member Posts: 80
    edited July 2015

    Karen you are an inspiration with your positive attitude and always exercising. I have now started a food/ poop/ diarrhea med diary so I can remember how much of this stuff I am taking and when. It's not helping so far as I just had D on short walk around the block w the dog. Life is very odd when a person becomes jealous of dog's solid BMs twice a day! Sad really. None of you know me so I can feel free to express such gross thoughts on this website. These antidiarrheals are opioids and they make me loopy... I'm sure that is where this is all coming from!!! Maybe they will make me tired as well and I should just go to bed.

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  • Meme117
    Meme117 Member Posts: 194
    edited July 2015

    Bekah sorry you had to hit the ER, so glad your doing better! Your hair is amazing, how far PFC?

    Mary sorry to hear about your port, one more way to make this shit sandwich shittier- is that a word?

    Karen your story is amazing, so glad you advocated for yourself! And I absolutely love the memo statement.

    I have received so many cancer newsletters, info brochures, books etc that I'm now getting to read thru a lot of them. I read this today and thought it'd be nice to share

    Think like a Thriver. Thinking like a Thriver doesn't mean you wait till you reach a 5 or 10 year milestone and it doesn't mean you need to be declared NED. Thinking like a Thriver applies to any age, any stage of life. It simply means you shift your thoughts to a better place.

    And - Chinese proverb - When sleeping women wake mountains move.


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  • so-she-did
    so-she-did Member Posts: 202
    edited July 2015

    I'll have to go back and read but figured if I was ever going to post anything I had better do it first. Seems like I get through reading most of the posts lately and then don't have the time to write.

    I got the bracelet from Bekah (thanks Bekah!) and love the feeling of having you all here. I have added the fatigue truck to it, which is quite apropos since I am feeling like the fatigue truck comes to town just to run me down each afternoon. I have completed 21/33 rads and am just now getting a few sore spots. I also had the brain MRI and bone scan and all came out well. Now I am nervous that the chemo shrunk a brain tumor since the dizziness stopped during chemo. Um, paranoid much? If it isn't one thing to obsess about.... lol!

    My sister-in-law came for a visit and then flew back with my kiddos so they could spend time with family. I have to say, it is a nice reprieve even though I miss them like crazy. My DH leaves tomorrow morning for 3 weeks so it is going to be really quiet around here. Not so sure I want to be alone with my thoughts until the kiddos get back in 2 weeks since I have been struggling with depression. I'm hoping that lifts once I am done with rads and back into a more normal life again. I really don't want to go on an anti-depressant since it is contraindicated with tamoxifen. I know Effexor has the least impact on uptake but since I am 100% ER and PR + I'm not willing to go that route unless I absolutely have to. My life depends too much on taking tamoxifen. I read a study on magnesium and depression so I have upped my supplement. It said it takes about 2 weeks to see any effect so I m keeping my fingers crossed. I have also started looking into resources for support groups and cancer rehab so between the magnesium and some outside help I am hoping to kick this depression out on its ass.

    I hope everyone has been doing well!

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  • slothabouttown
    slothabouttown Member Posts: 449
    edited July 2015

    Amy, I hear you with the paranoia and the worry.. I live alone and it's so easy to go down the rabbit hole when it's just you and your thoughts. I've been walking most every morning since diagnosis but since ksusan started the exercise thread that a lot of the March chemo group has joined I've started walking every night after work too. I have to say that my depression, worry , insomnia and general obsessing about cancer have all diminished so much in just the week since I've upped the exercise. I push myself to walk faster every day and I get home tired and sweaty and feeling less worried about the future. I sleep better as well. The scary thoughts are still there but I feel more able to harness them and keep them from becoming overwhelming. I also felt better about a week after finishing rads, I hope the same for you. I saw my RO today for my "discharge visit" and he said I'd healed well and he hopes he never sees me again!

    I'm on the tamoxifen too and have read about the antidepressant contraindications. I also read it's not uncommon to gain 40 lbs on it. That's motivating my exercise to say the least!

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  • rleepac
    rleepac Member Posts: 755
    edited July 2015

    Just ran into a lady from church and we discussed a mutual acquaintance who had BC a few years ago (very similar stats to my BC) This lady just found out she now has bone mets in 4 places. WHY did this lady feel the need to tell me this?!!?!! Now I'm in a funk. Damn church gossip... It's a wonder we ever find a way to 'go on and live your life' as we are told after treatment. Too many stories of recurrence or mets to allow me to rest easy :(

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  • SueH58
    SueH58 Member Posts: 632
    edited July 2015

    Bekah - you could have just as easily run into someone who told you the story of the friend who is 10 years post DX and is doing great. Why she would tell you that story baffles me. What was she thinking? (apparently she wasn't). I remember when I was first diagnosed my neighbor brought me flowers and proceeded to tell me that she lost her niece just last year from BC. Good to know.

    You have done everything you can to kick this beast and you are strong and fiesty. I hope you can move on with positive thoughts that you ARE a survivor!

    Hugs!

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited July 2015

    oh dear. I don't know why people do that, Bekah. Good luck tomorrow with the MRI. My thought will be with you.

    Amy, sorry I mixed up who hog the bracelet next! I'm glad it will be with you while your family is gone to remind you that we are always with you.

    Sloth you are after Amy. I know how you guys all feel. I've been hanging around in the Crazytown thread. Sounds like you both might enjoy that and have something to ...., contribute?

    Maryellen, loved that quote.

    I will be starting Tamox this week sometime. Just waiting till the chemo SEs areout of the way so I don't mix up SEs. Plus I'm scared shitless.

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  • SueH58
    SueH58 Member Posts: 632
    edited July 2015

    Bekah - me again. I absolutely know in my heart I have beat BC. I don't know why--maybe because my mom with similar stats has lived 30 years post dx and mx, without any additional treatment. I may be naive, but better naive than spending the rest of my life worrying about it. That doesn't mean I won't take every precaution to prevent a recurrence, including 5-10 years on AIs, and lifestyle changes.

    Say a prayer of thanks tonight that you caught your cancer early, and for peace in your heart, knowing you have done everything possible to be a survivor.


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  • SueH58
    SueH58 Member Posts: 632
    edited July 2015

    Katy, I'm quite uncomfortable with proceeding to AIs as well. Seems the SEs are sometimes chronically worse than what we've been through so far. I am usually pretty tolerant of meds, so I'm hoping I'll do relatively well, despite the fact I have arthritis, and have already had a hip and knee replacement. Good thing the anti-estrogens are SO successful in fighting recurrence. I'm not sure my chemo provided me much benefit, but I know the AIs will, so I guess its easier to accept the SEs.

    So glad your'e doing so well!!!!

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  • lovlilynne
    lovlilynne Member Posts: 405
    edited July 2015

    Katy - is today still closing day? Just wanted to wish you all the best with your endeavor - new home, new start on life post-BC!!

    Lynne

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  • Trvler
    Trvler Member Posts: 3,159
    edited July 2015

    Katy! Is it closing day? I hope you have an easy move. How are you feeling now?

    Wow, with all the diarrhea! Is this from the Herceptin?

    I agree that exercise can keep depression at bay. Also, D3 is supposed to help with that. I have been taking 2000 IU a day since I am not getting much sun at all. Usually we go on a vacation or two but we aren't traveling this year so I don't get out.

    Bekah: I am sorry about the idiot at your church. I know we all get those stories all the time. I do sometimes get the survivor stories and love them.

    Amy: I hope you check in with us more with your kids and hubby gone. We are here for you.

    Karen: Thanks for sharing your story. I read EVERY word and didn't need popcorn. Good for you for not taking those doctors words for it. I think my biggest fear is going through another chemo. I don't know why. I have plenty of other things to worry about. :) But you have handled it so well with such a good attitude. My nurse yesterday was telling me they can almost tell who is going to have an easy time with chemo by their attitude when they first come in. Reading through our thread makes me think that's total horseshi$ but I didn't want to say it. I know many of the women here have great attitudes and have suffered a lot and it breaks my heart. I wish I could figure out why some people do well and some have such a hard time.

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  • molly1976
    molly1976 Member Posts: 403
    edited July 2015

    A friend from high school commented on my blog yesterday that she is an psycho-oncologist (I had no idea!) and she has treated many breast cancer patients over the years and every single one of them is still living. That was nice to hear, because I do think we all tend to hear the bad stories way more often than the ones of people who go through treatment and then move on to live the rest of their lives normally.

    I have Herceptin today and am kind of looking forward to zoning out in the chair for a couple of hours, which I guess says something about how my week is going. We had to put our very best cat down last night due to uncontrollable epilepsy.

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  • Leighrh
    Leighrh Member Posts: 317
    edited July 2015

    Bekah.. A gal at my gym yesterday was asking about my polly's ponytail... and she said..." you know my aunt had brain cancer, she never got her hair back".... Did I REALLY NEED to hear that?????? I guess people feel the need to "relate" to you and some times it comes out WAY WRONG!!! LOL

    Molly, I saw on FB about your kitty.... I am so sorry! :(

    Karen, As always you continue to amaze me, you have been through so much yet you are the pillar of strength for all of us, I truly believe that this is the end of road for your stupid cancer cells!!!

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  • Trvler
    Trvler Member Posts: 3,159
    edited July 2015

    Molly: I am so sorry about your cat.

    Leigh: I know you will get your hair back. You are on #6, right?

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  • Leighrh
    Leighrh Member Posts: 317
    edited July 2015

    #7 tomorrow Allison!!

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  • KBeee
    KBeee Member Posts: 5,109
    edited July 2015

    Katy, I hope the move goes well.

    Leigh, Brain cancer patients sometimes get radiation to their head which is why the hair would likely not grow back.

    Molly, Sorry about your cat.

    I hope my recurrence so soon did not scare anyone. Both of my parents have had cancer (both are still alive by the way), I had a TON of radiation in the form of x rays as a kid (as in had every bone in my body x rayed multiple times) and my job puts me at increased risk, so it was not a surprise. I hate when people tell me their dead cancer patient stories. I think we all know people who have died of cancer. I think we all know lots more who have survived cancer, and that's what we need to focus on. I am going to 2 visitations tonight ...one for a neighbor and one for a parent of my son's friend. Both died of sudden heart attacks...both way to young to be at risk. I refuse to go to bed scared of dying of a heart attack. Similarly, I put the "dead cancer friend" stories out of my mind too. Being a firefighter, when I go in to fight a fire, I know the floor could collapse, the roof could collapse or another heard of bad things could happen. They are in the back of my mind and I am observant for signs, but my only focus is on putting the fire out and me and my crew going home alive; we adapt as conditions change. I treat breast cancer the same way. I know what can happen and am mindful of it and look for it, but I try to just plow through trying to do my best to stay in shape, and adapt as things change. Thankfully 99% of the time I am successful at this. The other 1% when the fear catches up with me, I usually vent here to my sisters who get it, and I'm talked off the cliff and back to reality.

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