Starting Chemo April 2016
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Uniboob - My grays are holding on strong as well. As a matter of fact, I think they're growing like cancer cells, I'll look at my head periodically and and see one or two grays that are like 5 times the lenght of any other (very short) hair on this head. And they're really hard to pull out, I think they're holding on for dear life!
Annikaja - Had round 2 of TCHP yesterday. A long, day but not as long as round 1. So far, so good. No nausea or any other SE's really yet. I'm so happy you're doc is going to bat for Perjeta. It's reallyproving to be effective when combined with Herceptin for HER2+ cancer. The diarrhea can be rough, but I'm hoping it gets better. Round 1 was a double dose, so yesterday and going forward I'm only getting half of what I got in round one...hoping that means half the side effects!. Also, know that it will add an hour on to your treatment. I think the infusion is 30 mins and they also wait and additional 30 mins after each infusion before moving on to the next one to monitor for allergic reaction. I usually get it as my first infusion on treatment day. Please keep me posted and let me know how you make out. My fingers are crossed for you!
Wellshoot - I'm also up for a year of Herceptin. I hear though that once we're past the carboplatin and taxotere, the Herceptin should be pretty smooth sailing with little to no side effects - hair grows back, no nausea, etc. Hoping that it's a 30 minute infusion every 3 weeks an on with my "normal" life!
Numb, CJ, Gracietoo and all the others having a rough day here or there - thank you for sharing and for letting us all know it's okay to have a bad day. Lot's of ups and downs on this ride. It's tough being "strong' on the outside and scared, angry and frustrated on the inside sometimes. Know that we are here, and like one of you mentioned - we really do get it! You ladies are so supportive. Thanks for sharing and for posting the good, the bad and ugly! Best of luck to you all!
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I hate having cancer! there are times when I feel strong and other times I'm an emotional wreck. My family and friends are very supportive but it's hard for me to share all the crazy and whirlwind emotions in my head. Yesterday afternoon was rough, I was crying over the hair I'll lose and fears regarding treatment and just having cancer. My life is so different from just 3 months ago and I wonder to who will I be after this is all over. I'm so glad I have this group to share with.
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This is day 6 for me after the second chemo round and even though I feel a bit better than I did after Day 6 on round one I am still not able to go out today and enjoy a day out. I was all dressed up this morning and ready to go somewhere and then I suddenly felt I didn't have the energy, so I went for a short walk instead. Then I came home and had my lunch but still not feeling great. Trying to push myself today and keep getting negative thoughts. Hoping that tomorrow will be a better day. The way I feel today I couldn't face another round of chemo, but I have to keep reminding myself that I felt like this last time too but by the time round 2 came along I was ready. Going out now to buy a bar of chocolate
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I'm day 7 out. Tomorrow the fog should lift, and I do feel better than I did yesterday. A little better at least. I'm acting like a bit of a spoiled baby, I know. I have rarely been sick for any length of time. I run half marathons, do 100 mile bike rides, climb mountains. To have trouble walking the dogs around the block is incredibly discouraging. I agree that this phase is hard because it's long (16 weeks for me and I'm not quite half way yet - and mine is so short compared to some!) and it sometimes seems as if there is no end in sight. Chemo sucks. I just have to keep focused on the reality that without chemo, it would suck a lot more! I'm hoping Taxol doesn't fatigue me as much. One more round with the Red Devil - I'll be happy to put this one in the rear view.
Is anyone thinking of beyond this all? As in what do you want to do with your life? I know being an account manager and living the Silicon Valley Rat Race is not something I want to continue, but I'm not sure what. Ideally I would move to a mountain lake property and provide a home for old and abandoned animals while raising money for cancer research (not only breast cancer - I have friends dealing with other cancers which are far less funded). I'd also like to do something to help other cancer patients deal with this. Provide a support system for single people to have someone sit with them through appointments and ask the questions that need to be asked.
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I loved reading everyone's rants! I could have written them all.
The hair - I feel like I can suck up the physical effects and get through it but that visual slams it all home every time.
Family and friends - Yeah, I'm okay, just a little tired. I know they're concerned but I feel bad enough for having brought cancer into their lives, I'm not going to burden them with all the details.
And I just had the thought yesterday of being over all this. I haven't even figured out when all my treatments will be done. I have it broken down into steps in my mind, and right now I have two more rounds of AC and there's where I'm at. I get to the next step when I get there.
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Hello everyone I'm new here but I come here everyday to read, well I'm having Chemotherapy in may wanna get as much update on my treatment I'm starting may 16 my treatment plan is Epirubicin + Cyclophosphamide Every 2 weeks × 4 Doses Abraxane once a week for 12 weeks if anyone here getting this kind of treatment can you share your experience with me... wish you ladies all the best though out your treatment...
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CJSHARMA - I think that when you are used to being in control of everything and full of energy and drive it hits you hard not to be able to be like that now. You seem to have lead such an energetic life, with your animals who are relying on you and you take time for marathons etc, and now you have to take a step back and take it easy and that must add to your frustration. It doesn't bear thinking about where we would be without chemo so thanks for highlighting that.
What a lovely deviation.....thinking of what will be after chemo !!! Living on a mountain, pure peace and quiet, letting your animals roam around as they please in safety, enjoying the sunshine. How nice of you to think of single people who need someone to look out for them going through their appointments etc. You are one in a million.
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Nysa TC x4 4/28/16
Hi, I'm Nysa. I am 46 and I was diagnosed with Stage IIA IDC on 3/18/2016, grade 3 triple negative I had a lumpectomy, then re-excision and port placement in the months of March and April and started chemo on 4/28/16. Dealing with symptoms now but do-able.
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ANNIE - I had been taking the antibiotics regularly since last Fri but was feeling very drugged up so didn't take them today and started to decline as the day went on.
WELLSHOOT - Glad someone else is feeling the same as me. We have fallen flat after the mad rush to get treatment started and now that we are on it we have nothing else to do but endure it. I suppose it is not a bad time of the year, we are facing the Summer and not the Winter. I am over the hair loss, as the wig can camouflage that, but there is nothing to camouflage the feelings we have inside us.
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CJ - I'm totally with you in regard to the fact that this diagnosis has brought alot of stuff into my head about what I want to do with my life post cancer. I'm an animal nut like yourself - pretty active in animal rescue locally but I would love to do more. There are so many animals in need. ' My dream is to buy some land and open my own rescue one day. I'm definitely reconsidering my career path. I'm so over my job. I want to find my passion.
I also think about what I can give back when this is all over. Fund raising for cancer research?
This diagnosis definitely has got me thinking about my future. And that's a good thing.
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PDRCHICK - thanks for the consoling words. Hoping for a better day tomorrow. Best of luck for round 2.
HEATHET - I can see why you hate losing your hair, it looks good in your photo. I still can't believe I am going through all of this. I was so happy go lucky in January with nothing to worry about.
NJR426 - Just take each day as it comes, no point in looking to the end of treatment, just yet. I am the same as you are, 2 more rounds of AC and then I will start to think of what Taxol might be like. At least I am pleased that I have 2 rounds done now, and not just starting, that's something.
BRANDFORD37 - welcome here and hope your treatment goes smoothly for you. Hope we can be of some help. There is a May Chemo 2016 group starting up that might interest you too.
NYSA - welcome to you too and best of luck with round one. We are here to help you.
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thank you Numb.
Sometimes I feel bad posting on this thread since I'm not actually going through treatment... It's just nice to hear other people going through and thriving. It gives a little hope when sometimes it feels like there is none
Happy Wednesday
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WERWARRIORS - Never feel bad posting here, you need our support as much as your Mom does and I agree it is great to hear the positive feedback when someone is doing well. This is just a temporary hitch in our lives and there is an end to it.
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Hi everyone.
Gracietoo: I too struggled with feeling "sick" because of my lack of hair. The day of my first chemo treatment I had my husband shave my head. I wanted to control when I went bald. I felt embarrassed for a couple of days, but then I started to feel braver and now I feel beautiful. I am beautiful, despite having a bald head. I am beautiful because I am smiling and laughing and enjoying my three little girls each day. I am beautiful because I am strong. I even had one of my clients tell me I looked "radiant" bald. Kind of took me by surprise, but I realized that my long red hair was very pretty but did not define me. I started a blog when I was diagnosed so that I could rant and rave about the injustice of having cancer, but after I calmed down, I realized it is now my story and my journey that I will share with my little girls some day. I tend to cuss a little because I was so angry about being diagnosed. I was always a healthy person until this. Sorry to ramble on. Gracie's post just struck a cord. Despite the majority of us being strangers, we are connected by something dark and dangerous that will likely give us the beautiful gift of being present. Hope everyone has a great day. Kelly
Thanks for the help getting my profile set up.
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I am a planner both in personal life and in my career so I'm constantly thinking what next? It gives me something to focus on other than the day to day treatments. My sister has devoted herself to dog rescue and she loves it. I am thinking more along the lines of better/ healthier food availability. Especially in low income areas. I think supporting the organic food movement and farm to table movement is important and that is something I can do through my job as well.
I don't want to go through this and not make some personal changes. I've always wanted to move to the lake, but it hasn't ever been the right time. One thing I'm learning is no one can predict what can happen.
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Welcome to all of the newbies. We have a lovely group of ladies, so feel free to ask us anything.
weRwarriors - I kind of disagree that you're not going through this. You are, just not directly. Many of us are moms and we know what we would like so we're happy to help. Don't feel bad for posting. You need support, too.
Gracie - yes, I guess I want my life to have meaning. I might be an awesome account manager, but seriously, no one is going to be talking over my grave about what how I helped them be better at their jobs. That's expected. Even if they say - she lived life on her terms... That would be awesome. I really want that lake front property in the mountains, though.
I'm not 100% sure when my treatments will be done either. I only know I need to get through chemo which is neoadjuvant for me. We'll then do a mammogram and determine if I need a lumpectomy or a mastectomy. Then we'll figure out what else I need. Fun times, eh? .
I am feeling a lot better today. Still working from home, but I'm not going to feel guilty about that any more. I have the flexibility to take naps, etc, as needed, and I do my job well. It's a nice overcast day here today, and i'm enjoying it. (That and working in my pj's at 10:30AM!).
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Katvadjm - Thank you for your inspiring post. Post of the forum so far. Thanks for giving me a lift so very much needed x
WeRwarriors - So glad this group helps you along. Your path may be even harder than ours sometimes. I imagine that for our loved ones our cancers are horribly frightening. We have no choice but to get on with it while our loved ones can only watch and worry. I often wonder how I'd cope if it were my husband who was dealing with this. We dont have children and he is my whole world. I don't think I would be so strong in the face of it. You are an amazing support to your mother.
Welcome to all the new posters on this forum. I hope you find lots of help, advice and inspiration here.
Feeling so much better today. Great to feel the fog lifting again. This really is one hell of a rollercoaster ride!
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I think its interesting that so many of us are feeling down, it must be as Numb said the adrenaline of starting treatment has gone and now its just a waiting game. Gracietoo you described how I feel to the letter, I´ve been trying so hard to be the strong and brave woman everyone expects, its not as if I have a choice, we all just have to do what we have to do and deal with it all, and sometimes its so hard to keep all those weird emotions to ourselves. I never want my kids to see me cry, specially not over being afraid or tired or confused.
as for rethinking my life, its really funny, but lately when im tired I just go online and look at real estate! jaja I don't even care about the place, I type stuff like lakefront house or whatever and dream away, I know I definitely have to leave this city, its unlivable anymore, so maybe in the future that is one of my plans, who knows, for now its one step at a time.
welcome to all new forum members
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thank you Numb.
Sometimes I feel bad posting on this thread since I'm not actually going through treatment... It's just nice to hear other people going through and thriving. It gives a little hope when sometimes it feels like there is none
Happy Wednesday
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ladies, your posts summarizes what's going on in my world. Day 6 from first round and I am feeling emotional and down. It's hard to say "I am okay" all the time. We are no longer our old selves and part of this whole process is figuring out how to live with our new normal. I have bouts of paranoia or bad thoughts, need to learn how to channel positive energy again. The mind is very powerful. Mental health is a priority
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Jlb2016: Wanted to talk about the bouts of bad or paranoid thoughts. I have had a tendency to picture my death and how my three young girls would react since my diagnosis. I initially felt panicked and guilty by the thought because of trying to stay stress free (haha) and very strong and positive. I talked to my counselor about this (started going to counseling after diagnosis). She gave me some powerful advice. She said to allow that part of me to exist, to ponder her, but to try and take a mental step back from my frightened self and just observe how the emotion plays out. Sounds strange, but it has really helped me decrease my guilt and stress over having negative thoughts. That part of us that dares to think worst case scenario is normal. I have decided that I have three distinct parts. 1. The warrior badass who can handle anything and wears an engraved pendant necklace that reads "fuck cancer" (I wear it backwards of course). The chic who ( now) proudly walks around bald with a smile on her face. 2. The practical researcher who is going to read every new article on the latest treatment and ask a ton of questions of my oncologist and geneticist and 3. The incredibly emotional, scared mother of three little girls who desperately wants to see them grown up. The woman who is afraid that she has passed down a cancer gene that my end one of their lives early. I am all three. Good and bad days. I
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Thanks for all the rants and honesty posts. I think we all get there at different points and now that things are settling down and fear of the unknown is out, the actual depression is real. it sucks. really sucks. I loved my life before this shit and i know ill love it again but ill be honest and say, i don't love my life now. I want to be the happy, inspiring, hard working, good friend/mom/wife that i usually am. I want to stop thinking and talking about cancer all the time.
My friends and family have been amazing. My work colleagues have all been reaching out but i get too annoyed to speak to them. I worked in a corporate environment a large company. Did lots of traveling and think i made a big impact for the company. My mantra was always, I have the best job in world and am so lucky to love what I do. Listening to the political drama now, the stress of things that seem so trivia, I just can be bothered. I am curious what i will go back to when this is all over, and what ill want to go back to.
The say don't let cancer define us. I don't think it will ever define me but i guarantee it will change me. Interesed to see who the new me will be.
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Hi ladies,
Had my first Taxotere/Cytoxan/Herceptine treatment on the 27th. Was cold capping so the cold was worse than the infusion itself. Have been feeling ok except for more tired than usual and some joint pain. Sunday was the worst! The info sheets says that the blood counts will drop at 7-14 days, does that mean that the worst side effects will come in the next week?
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Amen, sisters. I agree with all of your posts today. Interesting that we all seem to be having the same cruddy day at the same time.
Heidi16- I am a cycle ahead of you on taxotere/cytoxan. You are most likely past your worst side effects at this point. Your blood counts dropping means that your immune system is at its weakest point in this cycle. it is a good idea to watch who/what you are exposing yourself to this week, and, of course, wash your hands
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Just reading all the posts, what a beautiful sharing of feelings, emotions, fears, hopes and dreams. Welcome to all of it! I had a great day although a bit tired from being so busy at work last week and trying to catch up today. I am excited to do Round 2 on Friday, a bit anxious, but I like the feeling of my 15 weeks of chemo passing week by week...I have 12 more to go. I like what someone shared about taking it step by step. To me, the chemo was/is the scariest and hardest part. Two months ago, I couldn't even say the word "chemo" without breaking into tears. But I am changing, and for me, it is about fear and replacing it with surrender, acceptance and gratitude. Sometimes I think about things that are worse than this cancer...conditions that are degenerative lifelong....I feel like Then grateful that I can walk, that I can talk and speak, that I can run and laugh and that I will get better and life a beautiful life. There are many gifts in this difficult journey, like what some of you were talking about with visions for a different future, helping others. I mean look at what this has brought about here – we are an international expression of unconditional acceptance and caring. That's amazing.
Well, that's my inspired self…my other self will be around this weekend when I'm feeling miserable!
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God bless and good evening everyone!
Computer and site access issues have prevented me from chiming in since my first post. Now that my computer is up I came here to vent about having an emotionally crappy day, only to find that many others had already expressed every feeling and thought I've experienced today.
Thank you and hugs to you all who have so eloquently saved me about 15 minutes worth of typing! *lol* I feel better reading all of your responses - not in a "misery loves company" type of way, but I take solace knowing that I wasn't alone with my tears and anger earlier today.
Although I've thought long and hard about it, I still haven't taken the plunge to cut my hair yet. I'm only 6 days post 1st A+C treatment so I haven't experienced any excessive shedding. The pure irony of life... On multiple occasions I've grown my hair out to waist-length (and longer), only to cut it and donate it for alopecia/chemo patients. I'm so torn. It's back to my waist again and the thought of it falling out freaks me out. But the other side of me feels like if I proactively cut my hair, I'm surrendering my control to the cancer/chemo. I'm not a control freak, nor am I super vain, but I absolutely hate, hate, HATE the impact this diagnosis has had on me, my life and family.
Ok, rant over. The bright side of this is that I've had plenty of time lately to binge watch old "Prisoner Cell Block H" episodes on you tube. Now that hubby and son are tucked in, I can go catch another episode.
Sweet dreams tonight, and on to a new day tomorrow.
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Hello Ladies: Numb and "first of 'April" starters: your wisdom and what you have experienced first has been very helpful to us late comers. Thank you for starting this thread, which is really full of supportive, wonderful women! I share the sentiments of of most of today's posts; I've been thinking a lot about life changes post-chemo and cancer (over a year for me with Herceptin.)
As a late April first round starter, I've been having my first post-chemo week (on weekly Taxol and Herceptin, so it starts again Friday.) It has been tougher than I expected. Maybe because everyone said I was in such good shape before, so healthy, great I exercised, came through my double mastectomy with an A+, Taxol is easier than AC (true my onco said today, but not for everyone.) I've had nausea, body rash, flushing (the least of the problems-who cares say I!), fatigue (duh), muscle aches, twinges of deep bone pain, some mild tingling neuropathy in hands and feet (will "mildly"ice this week to help prevent, per onco, as Taxol toxicity builds up, and , worst of all horrendous, incapacitating, self-depriving, can't eat at all heartburn and indigestiion. This is finally getting under control tonight--it's there but held at bay--by myriad meds. I am so very much looking forward to sleeping, though it will still be propped sitting up. Oh, and bad constipation, overcorrected when nothing worked for 4 days...you get the idea.. Had to cancel physical therapy for mastectomy issues because I was just too fatigued and too ill in the morning. Disappointing as I am trying to get full shoulder mobility back and reduce my lympodema in arm.
On my daily list of good things--(it really does help): heartburn is improved; I successfully got my dog away from the baby possum she caught while on the grass doing her "nighttime business", and in fact, I shooed the dog away while the animal was just, as it turns out, just terribly stunned, and luckily the animal woke up and escaped; my son stopped by for a visit and we chatted for an hour which was very nice; and the clouds were very pretty today-I enjoyed our overcast spring day. I love all kinds of weather. So though I didn't get a walk , all in all, this was, I am concluding, a good day.
Here's to a great day for everyone on Thursday. Thank you all for being here and sharing so much!
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At the risk of sounding like a Pollyanna, I want to come at this from a whole different perspective. I was diagnosed back in early February with Invasive Ductal Carcinoma. It took 3 months to get to a final diagnosis and come up with a treatment plan. A few days before we were going to start, they found something on my liver. An MRI was ordered and the results from that were inconclusive. A liver biopsy was ordered.
My doctor told me not to freak out. But how do you not freak out when your original diagnosis of extremely curable (with a bit of a long haul) turns into a possible met stage 4, non-curable? And I know these boards are full of women dealing with that diagnosis. It breaks my heart.
I soldiered through having my sister-in-law's wedding at our house, 2 days after that phone call. And waited 12 full days for the final all-clear.
I have to tell you, it put everything in perspective. I am back to highly curable. But I am looking at 12 weeks of taxol, herceptin and perjeta followed by 4 treatments (every other week) A/C then lumptomecty, followed by possible radiation and herceptin for the rest of the year.
I completed my second round of chemo today. I am cold capping. Not going to lie...it adds a ton of time and discomfort to your chemo treatments. But it is a choice I made and am very grateful to have been able to make that choice.
Life is crazy sometimes. We don't always like the hand we are dealt. I just got married last September. I am 56 and was divorced for over 17 years. It took me that long to find the man of my dreams. He lost his first wife to breast cancer. So, how do you come home and tell this wonderful man who you adore that now, I have breast cancer, too?
But here is the deal. I have had the thoughts...the dark thoughts. But I realized pretty early in the game that we are actually in control of what we think. When ever I have one of those thoughts, I thank myself for trying to protect me (because that really is what it is all about...that cave woman survivor that needs to worry about such things) and then I say out loud, "Not my story". Because I decide what my story is going to be.
We have so much at our disposal to take a very active role in making our bodies and minds extremely unfriendly places for cancer to exist. We can do tons with diet, exercise and stress reduction (meditation, etc.) Your MO is not going to tell you, so go out and research it yourself!
There are three great resources to start with. "Anti-Cancer - A New Way of Life " by David Servan-Schreiber, "Dying to be Me" by Anita Moorjani and a great website called NutritionFacts.Org. It is Dr. Michael Greger's site. He combs through all the studies to bring you the best and most current information on fighting disease with nutrition. He uses science. And backs everything up with solid research. Go there and search broccoli sprouts and breast cancer. You will be amazed by what you find.
My point is that you can take a roll in this. You don't have to be a victim of this. Cut yourself some slack for having these days but then pull out the gratitude card and get back on course. You are not a passive victim here.
I remember when I was first diagnosed. I thought...oh my God. I don't want to be one of "those" women. Over the last 3 months, I have found out that "those" women are warriors. And even though I still go through those days that I simply can't believe that I am sitting there watching the chemo drugs flow into my body, I will not let this take away how I live today
Because in reality, all we all really have is this moment. And we decide how we are going to spend it.
I love you all.
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SusanBP
So very well said... I'm at work with tears almost running down my face.
"Not my story"
Those thoughts are what really get to me and they come on full force and are so loud. I have to learn to confidently say back "not my mom's story" and believe it with my whole heart
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