Starting Chemo October 2018
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Hi everyone,
I'm sorry I haven't posted in forever - things have been a little rough here lately.
I finished chemotherapy on January 11th, and then had my surgery on February 20th. My surgeon said everything went well, and things did (except that we learned I'm allergic to dermabond).
And then I met with my oncologist and surgeon for my post-op follow-up. Unfortunately, my tumor didn't respond to chemo as well as we'd hoped. It only shrunk by ~50%, so I have more chemotherapy in my future (just young that makes me want to keep). My surgeon said it would be six months of oral chemotherapy after radiation, but because I'm so young and I have TNBC, she's recommended me for a trial in DC involving immunotherapy and the same chemotherapy drug she's recommending. I meet with them on Thursday to discuss my options.
I also spoke with my surgeon this week, and learned that my margins were too narrow (less than 1mm) , so we're going back in. Another surgery on March 20th.
I'm just physically and emotionally drained right now. I thought the second surgery might be a possibility, but NO ONE on my case team mentioned ANYTHING about the possibility of needing adjuvant chemo, so it was a complete shock that I'm still reeling from.
I'm going to try to read through some of the past pays here and get caught up. Y'all are an amazing group of warriors, and I'm hoping for the best for all of you.
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Antigone newer person here & I have to say how terrible for you. I know I would be pretty upset by the news you were given. I wish all the best for you & keep up the good fight.
Doris
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Oh Antigone, I’m so sorry your tumor didn’t respond as well as hoped and you need more surgery. I am so glad your team is on top of other options for you. Immunotherapy seems very promising. How are you recovering from surgery? I had my BMX the same day as your lumpectomy. Let us know how you’re doing when you feel up to it. We’re here for you
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Hello All, Taxol #11 is coming up on Thursday. Getting close! I have a couple questions, have any of you ladies experienced any of these side effects? 1. Eye twitching, I swear I could be talking to my husband and all of sudden one of my eyes on the side will slightly twitch over and over again off and on. It's weird! 2. Toe cramps, sometimes I will be laying in bed trying to sleep and my toes cramp for alittle while off and on. 3. Random tears, not from crying but just out of nowhere my eyes will start leaking. Anyone want to make me feel normal here?
Pommom - congrats on knocking another one down! Only 3 more to go for you! I hate the bloody crusty nose, its so gross, it's like a burnt lasagna stuck inside your nose, its just not right! Hope your digestive system calms down for you. Yep, Doris, had the same, had everyone saying how much they were going to help, call, visit, etc I was promised the stars basically and outside of a couple people dropping off a meal quickly and racing away as fast as they came, that's all the aid I've gotten. Nobody asking how I am, how I feel, etc, even the couple people who dropped off a meal didn't ask or come in and sit with me a bit for company. I too feel like I am in the outside looking in, I especially felt that around the holidays, seeing all these smiling faces with friends and family surrounding them, I was insanely jealous. Still feel pangs of it when out and about. My husband especially took great offense than I dropped off the planet as far as our friends were concerned, husband has gotten in a few verbal arguments about it too with people who had promised us the moon and then ignored us. It's amazing the things cancer brings out of the woodwork, you really do find out who your friends are and who really has your back. It's not that we wanted the moon, we just wanted a call to say, "Hey are you guys okay?". I would of just been happy to talk to someone over a cup of coffee, just to feel normal.
Antigone- I kinda figured something was up. I'm so sorry about your news. You seem to be in the same spot as Notgivingup, she's triple negative too and she ended up having to do chemo again too after surgery. On a positive note I have really heard great things in regard to immunotherapy especially in regard to triple negative, so I'm VERY happy for you that your being recommended for it. So sorry you got to go back in for surgery, but I'm glad they are making sure they get all of it out. My MO mentioned to me chemo pills as an option after surgery (hadn't mentioned more chemo after surgery previously) but wants to wait till pathology after surgery, she's thinking it might be dead in there based on feel and mri. We shall see, I am really not sure I have to strength for anymore chemo after getting through AC and almost completing T. So glad you popped in to say hello, you have been missed! Keep us updated when you can!
Okay, I wanna vent alittle bit about an annoyance I have. I am so sick and tired of watching TV and seeing that stupid Cancer Centers of America ad on the TV, or some ad for a new drug for people with breast cancer. Isn't safe to turn on the radio without hearing more cancer advertisements. Heck, I can't even drive TO my infusion without seeing ads along the highway for cancer centers or drugs for cancer. How about you fartknockers stop advertising to me and finding ways to get my money and come up with a dang cure. All this money being thrown at cancer, and yet many of us are going it alone or with a spouse without much in the way of support outside that. Just isn't right. I am just so sick of the advertisements, ENOUGH ALREADY. *End Rant*
I was recently thinking something, what if song titles or songs got chemofied...what would they look like?
"Pocket full of sunshine" ----chemofied--- I got a pocket full of Zofran
"Truly, Madly, Deeply"----chemofied---- Truly, Nauseous, Lady"I always feel like somebody's watching me"----chemofied--- i always feel like somebody's touching me
"Its all coming back to me now"---chemofied-----Its all coming back up me now
"Return of the mack" -----chemofied"---- i want my hair backAnyone think of more?!
LOLSeriously, Mariah Carey's Hero song is a good one to listen to - If you listen to it in terms of fighting cancer, it's pretty awesome
Hope you had a great weekend ladies!
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Rabbit - I laughed til I cried! What would we do without your humor?!
You ladies are my saving grace. I have two friends who have shown up. The rest have disappeared. The one person that I thought would always be there for me, my person at work, finally, after not hearing from her for five months, text to get my address so that she could send me her daughter's wedding invitation. Really?? They want a gift. Like I can afford a gift with all the medical bills. One person text right before my surgery that it was JUST a lumpectomy, right? No you brainless wit, it is cancer and it is terrifying. Sorry, I've been in a mood all day.
I agree that there seem to be a lot of cancer commercial. Do you think we notice more now that we have it? I feel nauseated every time I see a Neulasta commercial.
Anybody got any secret weapon for dry skin and itching? I am miserable.
Taxol #5 on Tuesday at 7:45. I also live an hour away but at least I am in the chair before they get busy. Thank goodness my husband drives me to and from so that I can sleep.
Anyone can show up when you're happy. But the ones who stay by your side when your heart falls apart, they are your true friends. Thanks for showing up, ladies.
Annie
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I have to agree with you all on people saying they will be there and then never being there. I know who is truly my friends and who isn't.
Annie, my daughter-in-law( my step son's wife) can out do your "it's only a lumpectomy". She actually has said "once they cut out the cancer, you will be fine." She has also said "I don't understand why you have to wait for surgery. They just need to take the cancer out of you." She makes me shake my head in disbelief. Trying to tell her that I was waiting for my liver enzymes to come down to be able to have surgery was interesting. She thought having surgery was then end of me having cancer.
I hope everyone is doing well. This time round with chemo, I am really taking care of me. Not pushing myself and having my husband and 2 adult children living at home step up and take care of meals and cleaning.
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Thanks, everyone, for your kind words.
I went yesterday to pick up a few post-surgery / mastectomy bras from Nordstrom and was able to find an amazing post-surgery bra for after my next surgery on the 20th, and several comfortable mastectomy bras (the True & Co bras are AMAZING) that don't irritate either of my mastectomy incisions. The downside is that Nordstrom is considered an out-of-network provider, but because the nearest in-network provider for me is more than 40 minutes away (!), I'll be fighting my insurance on that (they're used to me fighting them on things by now - I used to manage a state health care exchange so I don't give up easily
).I've finally come to terms with the fact that the next surgery is happening (the surgery scheduler actually just called as I was typing this), and that more treatment (either chemo, or immunology, or both) will be happening after radiation. If I take part in the trial, it will be randomized to be one of those three, with Xeloda as the chemo drug. If i don't take part in the trial, it will be six months of Xeloda with my oncologist.
@Notgivingup - what did I tell you about our journeys being similar? I'm rooting for you!
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Antigone-You have always said it. You are my TNBC sister. I will also be doing a clinical trial for immunotherapy after I finish radiation. I will be randomized into one of two groups. At least we both are doing chemo again together. We will get through this.
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Hi everyone! Well, I’m 4 days PFC. went for a CT/PEt today and waiting on results. Hoping hoping for a clear scan. They should be calling be this afternoon or first thing in the morning. Ugh. The waiting SUCKS! Thursday, I meet with the RO for a planning session. Then radiation. Then I’m going to take several months off. Then maybe in January, do my reconstruction. I debated trying to do it this year. But I probably need to give my body a rest. It may be the first time I’m actually going going easy on myself. This process has been tough! I start Tamoxifen when radiation is done. I’ll start Zoladex injections once approved by insurance. I’m 41 so I think my MO was on the fence about whether I needed the shots. She says the SEs (hot flashes) are pretty rough. But, if it helps, I’m doing it! Anyone else on Zoladex yet or at all? Tell me it’s not that bad? Please? 😬
Not giving up and Antigone - you girls go get ‘em! How wonderful that you both met and can battle together. Just know that have a HUGE cheering squad right here. Please please keep us posted.
Annie, how are you?!?!? Taxol #5?!? You are cruising through these! For dry skin, I’ve used Kopari cocunut melt. It’s all natural and smells great. It works for my feet especially which stay dry a lot. Keep knocking out those Taxols! You will done before you know it!
Rabbit! Are those wolves in your profile picture?!? I almost spit out my coffee when I saw them!! Made me think of that wolf story from way back! I agree there are TOO many cancer commercials. Even when I’m sitting in the oncology waiting room, a commercial for MbC comes on. Why the heck are they advertising? Do they think someone is going to purchase it because they saw it on TV?!? Ugh. Aren’t that what doctors are for?? Gosh.
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Sadlynew, I just got my first Zoladex shot/tablet thing an hour ago. I’ll be on it until I’m able to get my ovaries out in a few months. I’ll let you know how the SEs are. I was supposed to do Lupron shots instead, but my insurance denied it. Taking a break sounds great. I feel like we’re plowed through treatments once diagnosed.
Antigone, thanks for the tip about Nordstrom. My BS told me I could start wearing regular bras as soon as my PS releases me, but I don’t know what kind of bras would fit these strangely shaped TE foobs.
Annie, I was gifted some Palmer’s Cocoa Butter with vitamin E and it is heavenly. Aquaphor is also great for dry skin. A bit greasy, but works wonders.
Notgivingup, yes! You take care of yourself!
Rabbit, laughter is the best medicine, and you’re our group’s pharmacist! I also hate all the commercials for Ibrance, Neulasta, etc. Plus it seems like whenever I watch a new show or movie, someone is dying of cancer. Enough already!
I got my drains out today (12 days post-op) It felt weird, and I’m a bit sore now, but it’s so nice to not be tied down with those tubes. My BS also made me feel much better about my pathology results. I know the seriousness of everything, but she’s made me much more optimistic. I take my first Femara today since I got the Zeloda this afternoon. Not looking forward to the SEs, but glad I’m doing one more thing to kick this cancer!
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I finally had company today, long time friends called up & asked if they could come visit. The wife crocheted a lovely pink afghan that the breast ribbon crocheted in the pattern. That was so nice as I had just about given up on people. Then I received an email from daughter-in-law asking if they could come over on Saturday. They were going to notify other son & his wife to come with the baby.
A big pick me up which was welcomed very much.
Tomorrow is Taxol #9, knocking those puppies out. Looking forward to the end & a respite from chemo. I’m getting pretty tired, not much use for anything
Doris
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That’s so great to hea Doris!! Keep knocking out those Ts!! You’re so close to being done!
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Rabbit, I didn't have Taxol to know, but I did have Taxotere and I experience crazy eye twitches a LOT. As a matter of fact, it was my first SE complaint just about every time I saw my NP or MO. Neither of them said much about it. So, hopefully that is enough to make you feel like you are not the only one.
Antigone, I am glad that you found some bras that will work. I am sorry that things have changed with your treatment plan. We are here for you! Keep us posted on how things go.
Sadlynew, I will be starting rads soon too. I saw some pics posted on a FB page the other day that have me a bit worried about how it will go. Hopefully it will be as easy as most people say it is. Good Luck!
Doris, Hopefully the SE's are treating you well! Just keep knocking them out. You will be finished before you know it!!
I am 7 days PFC and feel like crap. I am hoping to bounce back soon. I am so tired of not feeling well!
Hang in there Ladies!
F
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good luck Fritz on the shot! Please do let me know how it goes. Hoping for no SEs!
Got my PET results back yesterday. All clear! Woohoo! So so very happy.
I saw this bracelet online and am thinking of getting one. I think we all deserve one as a matter of fact!
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Sadlynew- Omg! I love the bracelet! Let me know where I can order it from.
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sadlynew, woohoo on the PET results!! The Zoladex was easy. No SEs yet but it's only been 24 hours.
My sister actually bought that bracelet for me when I was first diagnosed. I've worn it to many doctor appointments and chemo cycles!
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Taxol #5 done!! No reaction to it. MO had me take lorazepam before I went this morning. It helped with muscle spasms. They also gave me benadryl and two other meds. I slept pretty much through the treatment and on the way home. Took a nap when we got home. Probably won't sleep tonight, but that's no big deal.
sadlynew - great news on the PET scan!!
Notgivingup and Antigone - Praying for you and here if you need us. I wish I could do more.
As for taking a break, my 7 year old granddaughter will have open heart surgery this summer (her second - the first being at 2 weeks old) and I need to take care of her sister, who is 4. Can radiation be put off for a couple of months? Will that affect cancer regrowing in anyway?
Also, have any of you heard or know anything about Accuboost radiation that can be done in a week? I downloaded a brochure.
For those of you suffering from nose bleeds, I got my netipot back out. Using distilled water, it has really helped. Very little bleeding and I can sleep at night. I use it in the morning and night. Hope this helps someone.
Annie
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Taxol number 9 is now history, yeehaw! Got pretty sleep once the benydrl kicked in, but the feeling passed. Friends actually visited us yesterday, my cousin & his wife. My husband knew him ever since they were in kindergarten. I found out we were cousins after talking with as teenagers. Anyway she crocheted a beautiful pink Afghan for me. It has the pattern of pink ribbons crocheted in it. That was so nice of them.
Therapy dog visited today, he always cheers me up, lovely little papillon. He put in some extreme fast times at the agility championships this past weekend.
Annie60 so glad you have made it to #5 with no reactions. I’m starting to get a few zingers in my thumb & finger once in a while, but nothing major. I notice I do get more tired the more Taxol treatments I have,also the bloody nose, more hair loss & everything I eat tastes like hell! Just take it easy if you can.
Thank you Fritz! We just have to suck it up & keep fight the good fight! I try not to think about the cancer as I have lost at least 9 people who were close to me from cancer.
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Ladies, I've hit a wall. The last few days has been rough. I fell apart in the waiting room yesterday as I waited to be called back for blood for Taxol #11 tomorrow. I've never fallen apart in the waiting room before. I know I'm almost to the end of this but I keep getting knocked back by something my MO mentioned at my last visit with her before chemo a couple weeks ago, chemo pills as a possibility after surgery depending on pathology for "Insurance purposes" since my tumor has only shrunk about 1 cm according to MRI I had February 13th. I can't do chemo again, I can't, I just can't. I don't have the support system outside my husband to go through more of this crap. Financially we are at the brink, outside of surgery I have coming up in April, we can't afford to do anymore either. Co-pays, Co-insurance....I'm bald, broke, scared, and frustrated. I see MO tomorrow so I'm going to mention all this to her. I want to be my usual self today and support all of you and encourage you all but today I feel like a shell of myself. All I'm doing is crying, dry heaving or both. How could I be at the end of the most aggressive treatment plan and still have the threat of more hell before me?
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Rabbit- I'm so sorry you had a breakdown. You have been so very strong and supportive of all of us. It is your turn to get the support from us. I get the "I can't do chemo again/ not wanting to get more drugs in the body". I will tell you that it is ok to have your breakdown. Cry/scream do what you need to do to get past this thought. You need to have a frank discussion with your MO. Be completely honest with them about your financial situation and where you are mentally about further treatment after surgery. I wish I could just sit with you have give you a hug and take away some of your worries. Keep your spirit and chin up. Everything will workout somehow.
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Nogivingup is right. You’re allowed to have all of those feelings!! Huge hugs to you! If anyone knows how much this all sucks, it’s us. Talk with your MO. I know many hospitals have options for patients who are struggling financially. Maybe he can guide you.
Love to you!!
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Rabbit, so sorry you had the breakdown. It’s better to let some of those feelings out rather than keeping it all in. The hospital here has all sorts of grants to apply for financial aid. Maybe there are some of the same things you could apply for. It certainly is an expensive thing to go through to save our lives which is a pity.
Such a bummer to have to go another way then find out it’s going to be much worse than expected. I’m wound so tight trying to keep my emotions in check. I try not to think of any other results, it’s sort of a denial thing as I’m always cheerful. I don’t want my husband to see me crack up as he couldn’t handle that. He would fall to pieces which would make me really upset.
Take a couple days to rage then come out fighting again.
Doris
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Aww, Rabbit, I am so sorry you've hit a wall. You are absolutely allowed to put down the pom-poms once in a while and feel all the feelings. It's just not fair, we go thru so much and it's never enough. It seems as if there is always something else lurking around the corner, no matter how proactive we think we've been. I've described them as curve balls being thrown, and the thing is, they get thrown at our heads and never miss. And the financial aspect? Forget about it, I have lost hours and hours of sleep worrying about it. All of the programs I've looked into are for people with no insurance or very low income, and we're not either (thank the Goddess), but that doesn't mean this process isn't going to cripple us financially. I've been working full time thru this whole process simply because we can't afford for me to not work. And I see no end in sight to the costs. Husband was toying with the idea of retirement next year, but that's absolutely out of the question now. It's all so fucking unfair, and there is not a single thing we can do about it. Just make yet another payment arrangement and go on. At this point, if we have to declare medical bankruptcy, I DGAF. Oh, I could just go on about the money for hours, but you get it, it SUCKS.
Just when you think you've reached a milestone, you get knocked back even further, and that shit hurts after a while. It's so hard to stay positive when all the news seems like bad news. And I know NotGivingUp and Antigone can totally dig what you are feeling too, they've gotten knocked on their asses by this process as well. The road map we were all given at the start of this journey did not list all the detours we'd encounter. I don't have any magic words to say to make it all better for any of us, no one does. Just know that we are all in this giant shit-show together and can totally relate to what each of us is forced to go thru day after day. Misery loves company, and sadly, we've got company in this battle no one signed up for. So, my dear Rabbit, my guinea pig, I feel you, and I know. And I am sorry for all of us. Keep your chin up, there has got to be a light somewhere at the end of this tunnel. We will all be right here for you until it appears.
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oh rabbit. My heart breaks for you. It’s ok not to be “up” all the time. We all have those times. It’s ok to cry, scream and vent. This journey takes such a toll, especially financially. Taxol took a chunk out of my willpower. Between Taxol 10 and 12, I was a mess. It messes with your head and your mood. I completely understand how you feel. It. Will. Get. Better. You won’t think so now because the medicine is tampering with the rabbit we know. I cried and screamed my way through those last few weeks of Taxol. I’m so incredibly proud of how far you’ve come in treatment. Yes, the doctors mentioned more treatment. But that’s the future. For now, just try to take one day at a time. Because looking ahead is sometimes too tough to bear when we are in the midst of beating the mountain lion. Look at the here and now. And especially, look at how far you’ve come. We are all here for you. I am here for you. Please come by to vent, scream or yell. Will be keeping you in my thoughts. This will pass. Just take it day by day.
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Rabbit, I hope you feel all the love we have for you! You feel what you feel and work your way through it. Know we will be here to carry you - the way you have been here for us! There truly is no safer place to let it all out and know that there is no judgement or condemnation - only acceptance, love and understanding. Each of our paths are different and yet, they are so much the same. We lean on each other. We cheer each other on. We lift each other up. We. Get. it.
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Thinking of you Rabbit.
Hope that today is a better day for you.
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I did #11 but don’t think I have the strength to do anymore at all. And I pushed very hard to do number 11. I was told chemo and surgery. Rads if I did lumpectomy. Now that I’m nearing the end more possible treatment is being thrown at me, I don’t feel at all in control what’s happening to me when I did before. I really feel like fear is being used to drive me to do things which may not be necessary. Ladies I feel like such a downer, I’ve so far put my head down and not questioned anything and done what I’ve been told, but I wonder when my feelings matter. I feel like pills and everything is being thrown at me to shut me up and keep me toeing the line. Does anyone feel like this at all? I guess I need to know I am not alone in feeling this way.
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Hey ladies, after consideration, I will post what I deleted...I was afraid to leave up what I posted because I felt it might be too discouraging to those about to start chemo. But as one who read old threads prior to joining a thread when I was first diagnosed, I know when I read someone's honest feelings, and it related to something I was going through, it really helped me not feel alone and let me know what I was going through was totally normal considering the circumstances. I just really have been feeling lately that I am not in control what happens to me anymore. I felt I was in control of my treatment beforehand but now I don't. I feel in a way things were not disclosed to me ahead of time that should of been, like the possibility of more chemo after nearly completing hard chemo. I was never prepared for the emotional toll this takes on you either, not just the physical, nobody ever said anything. I asked in my deleted post if anyone else felt like they were just being passed through treatment with fear being used as a mechanism for compliance. I am not knocking doctors or the treatments, I am just knocking the lack of openness when it comes to treating patients about what could be coming down the pipeline at them. Being constantly surprised and knocked back does nothing for me emotionally, in fact it cripples me. This journey isn't about battling just breast cancer, its about coming to grips with a whole new way of life. We are not just warring against a disease that is cruel and random we are warring against a life stolen in a sense, its melodramatic to say, but so often when I lay in bed I wish things were the way they were before all this happened. It's all I can think about. I am still fresh in this journey and maybe with some more battle scars I will weather things easier, but for right now things have been hard......Thank you Patrice, my bombshell for your encouragement and your understanding. I know all you ladies get where I am coming from, sometimes I just need the reminder.
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My dear Rabbit- I understand how you feel with not being told upfront about possibly more/different treatment. The difference between you and I is that I knew after finishing my chemo, we were in a serious time crunch for my surgery. Being TNBC, I needed to have surgery very soon to avoid more chemo. So I kinda knew that there was a possibility for more chemo. The thing that threw me was my liver enzymes. There really isn't a protocol to address getting the levels down quickly. I did leave it up to the doctors. So I guess you can say I just went along with them. I hope that helps you a little.
I am getting ready for my 2nd round of carboplatin this week. I will be in the chair on Thursday. I am hoping we will address the fainting and hot flash issues. I really don't want to keep fainting. I have been drinking plenty of fluids/water with electrolytes. Today I am making beef bone broth for me have after chemo. I will be eating soft foods because this chemo gives me a gag reflex issue while trying to eat normal foods. So I will try normal foods after a week.
I hope everyone is doing well.
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Rabbit, the feeling of not being in control is real!! Once you get the diagnosis, you feel like you’re on a runaway train. There’s so many unknowns. I wish cancer was more predictable so doctors could tell you “this is what is going to happen, and you should expect this.” Hopefully in the very near future doctors will be able to say that to cancer patients. Until then, I guess we’re the lab rats. Vent here whenever you need. We understand
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