Starting Chemo October 2018
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Today’s a down day for me, my hairs coming out in bunches, 2nd infusion is Friday and I’m nervous to feel so bad again, husband and friends have been great but I’m afraid they’re already getting tired of me being sick and this is just the beginning. It’s hard to be upbeat but I’m trying
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Newfromny,
I completely understand the hair loss thing. I think all of us do. It wasn't easy for me, but by my buzzing my hair, it gave me control of something. Cancer sucks, we did have control over getting it.
It is hard being upbeat all the time. There have been times that I wanted to scream, lash out, and cry over this. You know what I did? I screamed, lashed out, and cried. I got it out of my system and then depending on how I'm feeling, go for a walk to clear my head. You don't need to be upbeat for everyone.
I wish I could give you a hug and make you feel better about the hair loss. It is only temporary. You will get through this and feel ok about it. Besides think of all the cool things you get to wear!!!!! I have a tye-die bandana that is my favorite!
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Hi, everyone! I have been MIA for quite a few weeks now. It just hit me, I didn't want to hear the word chemo, tired of treatment, I can't get rid of the smells, blah, blah, blah...well, I finally put on my big girl pants. I also began to miss hearing your stories and what you all are going through. I truly missed that connection.
So good to hear some of you have had your 3rd treatment! Mine will be day before Thanksgiving.
Newfromny, my hair was my security blanket. I could be without makeup or have new wrinkles appear, but I always had my hair. I completely agree with Notgivingup, shaving my head gave me complete control. My first shower after shaving my head - HA! no hair covering the drain! I also felt better not having patchy hair.
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Ccaxt - I am so proud of you! You are not letting your anxiety stop you. We have all had our meltdowns - my husband and doctor got it after my first horrible round. I think it's good for us. I felt a little empowered telling them I was done and not going through this. As for the reflux, I think that was what made me so sick. I didn't drink enough because it felt like fire going down no matter what I drank. I am now taking three new meds. My MO changed me from Omeprazole to Protonix. The generic was cheap. I have taken omeprazole for decades and it just was not cutting it. I hope it continues to work for you.
Patrice - Happy Anniversary!! Your celebration sounds wonderful.
Fritzmylove - I am eating ( when the nausea will let me ) rice, baked potatoes, baked chicken, green beans, bananas, pudding and jello. Nice and bland. English muffins and toast with peanut butter are good. I am drinking milk and trying to figure out how to add more protein. Carbs and more carbs. My Mo said that was fine. Just eat. Nothing sounds good.
Sadlynew - I am so glad you are feeling better. I don't blame you for just getting #4 done. My #4 would be on Christmas Day. Pretty sure they'll reschedule that one.
I am up at 12:30 am to drink. I am determined not to get dehydrated. I have very swollen hands, feet and lower legs. Anyone got suggestions on how to combat this?
You all inspired me to continue treatments. Your support means everything. Your humor, insights, and suggestions make this easier. Thank you.
Annie
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Patrice, happy anniversary! Taxol is very tolerable and my SEs have been minimal. Getting it weekly is not dose intensive and I think that helps. I just had my 5th round and honestly my body handles it better now than it did in the beginning. My treatment is on Tuesdays and by the weekend I feel really good and energized. I am also trying to figure out if I should pay for a wig. It's only a few months and I just don't know. My oncologist is trying to figure out if it's possible to write the prescription in a certain way, but it looks like Kaiser just doesn't think a wig is necessary. Oh well. I did buy a really cute scarf from WithLoveLana on Etsy. Pretied so it's easy to put on. She's a breast cancer survivor as well so I was happy to support her! Highly recommend.
Have a beautiful day everyone!
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Good morning you BEAUTIFUL STRONG ladies! So sorry for all of you dealing with SE's from treatments. They are no fun for sure!
Notgivingup and Fritzmlove you ladies look beautiful in your pics! Love them! Notgivingup, sorry about your anniversary dinner getting canceled. Hang in there with the se's. Our treatments are where out hope is found and this is a season in our lives. Truley not a fun interruption, but when you look at the big picture, a short time compared to a lifetime with our loved ones.
RadagastRabbit, I just completed AC 2 weeks ago, thank goodness, and they offered me a break from beginning 1 of 12 Taxol, but I told them no way, I want to get this done with. I heard Taxol is easier by the docs and nurses, and by friends who have had the same treatments. Praying it is!
Joules and Patrice, I heard wbc counts drop during Taxol. I worry about that since I work around children who get sick often. They say I should be fine, just to be cautious of my contact with them and what they touch, and keep my hands washed and sanitized.
SisterStrong, it's encouraging to hear you are have completed Taxol 5 and everything has been doable. That is what I have heard more commonly from those who have done it.
Annie60, that is awesome that you made your own lotion. I got the Lindi products, and have have to reappy along with vaseline. I am just so dry around the mouth. Nothing seems to help. It ages me!!
Fritzmylove, Yaay on the tumour shrinking and lymph node! That is so awesome!!
Joules44, I am also doing Taxol weekly. I just finished 4/4 AC, and did my first Taxol yesterday. !/12. They said the dosage is lower/dense doing it weekly for 12 and better tolerated. Your 1/3 done girl!!
I competed 4 AC two weeks ago. Somehow I managed to run 20 miles after SE's let up and got to feeling myself each treatment. I started Taxol 1/12 yesterday and I am hoping to continue to run through it all. It really helps me feel better physically and mentally.
I had been getting horrible acid reflux and heartburn as a se of the AC, however after numbe 4 I decided to take Nexxium before that se started, and I didn't have it at all. I am hoping to avoid it with the Taxol, but wondering if I should continue to take the Nexxium? I feel decent today, day 1 after Taxol 1, but we will see what the week holds. I have missed 1 work day since starting my treatments in September.
After I compete the Taxol, I will have 6 weeks of radiation.
Regardless of what treatment, make sure to drink LOTS of water. Add flavored drops if you need to. There have been days I have had to, and it helps get the water down. But it helps flush the poison and toxins out of the body and makes a huge difference in the se's!
Thank you all for sharing with honesty what you are going thru. It is truley helpful!
Hang in there ladies. This season is our H O P E!0 -
Got it done!
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Yea!! Ccaxr!!! I am so proud of you!! You are a beautiful lady!!
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yay Casey!!!! SO proud of you! And you look awesome! Keep it up! We are all almost there!
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Look at Casey, getting it done with her boys there for backup. You are killing it, and looking amazing while doing it. SO PROUD of your courage!
Good luck with the se's, lady - drink drink drink ......
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Yay Casey!! You look amazing! Glad you had your crew there to get you through
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Awesome Casey! You did it and you look wonderful!
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You guys are all so awesome!! I wish this forum had a "like" button. You have no idea how much ya'll's encouragement means. I mean, of course our loved ones encourage us. But it is nice when you know it's no bs coming from people who are doing it with you! You guys rock!
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Good morning to all, I pray that all of who are experiencing SEs that they are manageable I have had a busy week and had not had the chance to check in. I had my 2nd TX yesterday and was really nervous about it since many people mentioned that the second TX gets worse than the first. I am not sure if it will be the case for me but so far not bad. They gave me loads of meds 30 min before the infusion started. The only symptoms this morning so far is a unsettling in my stomach in the distance, not very noticeable, but in waves. Also when getting up to go to the restroom I felt very lightheaded. We shall see how the day progresses They gave me steroids in the mix but only the day of chemo an not for an ongoing treatment at home. I hate that they give me those and I want to ask my MO if it is possible not to take them. I don’t like the way they make me feel. The nurse said that they are part of the treatment to prevent nausea since the dense dose causes a lot of nausea. I wonder what happens if they just give me the nausea meds with out steroids...??
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Rad and Patrice, I did it. I shaved my hair on Saturday! I cried before and then I suddenly felt relieved as if a weight had been lifted off. The anxiety of waiting for it to happen was worse. This week stubble started to show like a man’s beard when it starts to grow. For a moment I wondered if I would be one of those women where my hair would not fall out. Then yesterday I saw that the hair everywhere else started to fall out like crazy. Today is officially day 15 from my 1st chemo and next day of my 2nd. Besides the weakness and lightheadeness I feel now, I don’t feel other sever SEs. Has anyone experienced this or is it too soon to say?
Everyone take care, I pray for all of you
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Taurus...ugh the steroids! It's a battle I've had as well. First round, I had 10 mg and was told to take 2x 4mg at home days 2-4. I took them for 2 days and stopped. Had minor fatigue day 4 and was ok by day 5 afternoon. I HATED the way I felt. Dizzy, wired, flushed red face,little sleep.
Round 2. My mo let me go without any. Had some issues at appt that probably contributed but my anxiety kicked my butt. Got home and was soooo dizzy and just felt super high. Woke up the next a.m. and my neck was totally swollen which lead to more anxiety! (Fyi, I'm the weirdo that has anxiety disorder pre bc, blah) Went to dentist and had 3 teeth pulled BUT she did not think they were abcessed at that point. (They were ones that were going to need to be extracted, but planned that at a later date). Anyway...woke up to nausea next 2 nights. Had zero first round. Nothing horrible, handled with crackers. But, after all of that I told doc...IM DONE!
Long story short, and almost a month later, I did round 3 yesterday with only 5mg steroids and gonna take 4mg next 2 days and see how I do. But the reality is, Its all a crap shoot. Was my neck swollen from teeth, no steroids, chemo? Was I dizzy from other premeds or steroids or just the damn chemo? Anxiety just because it's a damn stressful situation? Who knows? I will say, day 2 today and I really dont feel bad at all. A little flushing of the face.
Maybe try lowering your steroids at premeds? Definitely a talk that can happen with your MO.
Hope you continue to have minimal SE'S! your halfway through AC...WOO HOO!!
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Hey Taurus - Sounds like you are doing amazingly well, so glad to hear. I get steroids in my iv, but not to take at home. I don't like the way they make me feel generally, but it's not unbearable. Thus far, I have had very little se's and if the steroids are helping with that, i don't want to mess with it. I did my 3rd treatment last week, and although I was terrified that the cumulative effect would start kicking my butt, the worst of it so far has been acid reflux, crazy acid reflux (even with the prescription prilosec) and fatigue. Lately, I do have a semi-metallic taste going on that gets worse when I eat. Not so hard to live with.
Its silly how much shaving your head actually helps, but i totally get what you are saying. And I too just have some random beard stubble on my head among lots of baldness. I can report that the razor stubble on my legs continues to hold on for dear life and I haven't the heart to shave it off. Thank goodness we are going thru this in winter so that hats and scarves don't look too out of place. You look amazing in your scarf, such beautiful eyes that the colors really enhance. Gorgeous!
You already know this, but drink as much as you can, it helps so much. And get out and go for a walk. A little fresh air and exercise helps out tremendously. Take good care of yourself, you are 1/2 way through! Way to get it done !!
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Taurus, you’re stunning!! I think the steroids are what’s causing most of my SE’s. I feel like garbage until the day I don’t have to take the steroids at home. I’ll be asking the doc about it next time I see him.
Heartburn has been a huge issue for me as well. They have me on Pepsid right now, and that seems to help a bit. Another not so fun issue is I’ve been getting my period every 2.5 weeks, and it lasts for at least a week. We’re watching my blood counts, but I’ve been told it can happen with some women on chemo. Wish it would just stop like they originally told me it would. Oh well. I’m getting an ooph/hysterectomy after my BMX, so I won’t ever have to deal with periods in a few months.
Looking forward to tomorrow when my SEs typically start to diminish. Good luck to everyone this upcoming week
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hey everyone! I was online looking at different skin lotions for my face, because it's so dry. I came across a brand I liked and their website had a story from a young breast cancer survivor. She provided this story, and I couldn't help but to laugh and completely relate. Hope it does the same for you all. Sorry for the long post. The website is www.kopari.com.
Cancer: the mountain lion in your fridge
What's it like to go through cancer treatment? It's something like this: one day, you're minding your own business, you open the fridge to get some breakfast, and HOLY SHIT… THERE'S A MOUNTAIN LION IN YOUR FRIDGE.
Wait, what? How? Why is there a mountain lion in your fridge? NO TIME TO EXPLAIN. RUN! THE MOUNTAIN LION WILL KILL YOU! UNLESS YOU FIND SOMETHING EVEN MORE FEROCIOUS TO KILL IT FIRST!
So you take off running, and the mountain lion is right behind you. You know the only thing that can kill a mountain lion is a bear, and the only bear is on top of the mountain, so you better find that bear. You start running up the mountain in hopes of finding the bear. Your friends desperately want to help, but they are powerless against mountain lions, as mountain lions are killing machines. But they really want to help, so they're cheering you on and bringing you paper cups of water and orange slices as you run up the mountain and yelling at the mountain lion – “GET LOST, MOUNTAIN LION, NO ONE LIKES YOU" – and you really appreciate the support, but the mountain lion is still coming.
Also, for some reason, there's someone in the crowd who's yelling “that's not really a mountain lion, it's a puma" and another person yelling “I read that mountain lions are allergic to kale, have you tried rubbing kale on it?"
As you're running up the mountain, you see other people fleeing their own mountain lions. Some of the mountain lions seem comparatively wimpy – they're half grown and only have three legs or whatever, and you think to yourself – why couldn't I have gotten one of those mountain lions? But then you look over at the people who are fleeing mountain lions the size of a monster truck with huge prehistoric saber fangs, and you feel like an asshole for even thinking that – and besides, who in their right mind would want to fight a mountain lion, even a three-legged one?
Finally, the person closest to you, whose job it is to take care of you – maybe a parent or sibling, a best friend or boyfriend, in my case, all of the above – come barging out of the woods and jump on the mountain lion, whaling on it and screaming “GODDAMMIT MOUNTAIN LION, STOP TRYING TO EAT MORGAN," and the mountain lion punches everyone right in the face. Now your people are rolling around on the ground clutching their noses, and they've bought you some time, but you still need to get to the top of the mountain.
Eventually, you reach the top, finally, and the bear is there. Waiting. You rush right up to the bear, and the bear rushes the mountain lion, but the bear has to go through you to get to the mountain lion, and in doing so, the bear TOTALLY KICKS YOUR ASS, but not before it also punches your homies in the face. And everyone is now staggering around with a black eye and bloody nose, and saying “can I get some help, I've been punched in the face by two apex predators and I think my nose is broken," and all you can say is “I'M KIND OF BUSY IN CASE YOU HADN'T NOTICED I'M FIGHTING A MOUNTAIN LION."
Then, IF YOU ARE LUCKY, the bear leaps on the mountain lion and they are locked in epic battle until finally the two of them roll off a cliff edge together, and the mountain lion is dead.
Maybe. You're not sure – it fell off the cliff, but mountain lions are crafty. It could come back at any moment.
And all your friends come running up to you and say “that was amazing! You're so brave, we're so proud of you! You didn't die! That must be a huge relief!"
Meanwhile, you blew out both your knees, you're having an asthma attack, you twisted your ankle, and also you have been mauled by a bear. And everyone says “boy, you must be excited to walk down the mountain!" And all you can think as you stagger to your feet is “f*ck this mountain, I never wanted to climb it in the first place."
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Sadlynew I LOVE THAT
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April...that is awesome!
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Sadly that is a wonderful story. Very fitting. Thank you for sharing it with us.
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Evening ladies, shared Sadlynew's post about the mountain lion w the ones of us starting Nov chemo. Thanks for the laughs!!!!
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April, that is just perfect, thank you for sharing!!
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I'm so glad everyone liked that post. It makes me laugh, especially about the kale reference!
So I'm wondering whether I need radiation. And it's a mental struggle I think. Because I want to throw everything at this thing. My MO thinks I don't. My SO said I'm in a “gray area" but he does not think I need it. A gray area? Really? Because that sounds like a real reassuring area to be in! My onco was 27. Which is intermediate/high. I'm 41. Which is another factor. Whether I need it or not, I just want to know that I've done all I can to combat this “mountain lion." Has anyone struggled with this too? I am thinking just way too far ahead.
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Well, you know me april...I'd be like..SWEET no radiation! Bye! Haha. BUT, unfortunately that's not an option for me at this point. I will say a good friend of mine that went through all of this 4 years ago and only had a 3 legged mountain lion compared to my monster truck...opted for it all and is glad she did. She said shes damn sure shes only doing this once so threw everything at it. Not sure if that helps??
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I’m young like you, April, and I am taking everything they’ll give me. Though I doubt I’ll have an option with radiation, I know if I were in the grey area, I’d go for it. I’d kick myself if I didn’t do everything offered when I had the chance. Could you go for a second opinion? What are the risks vs benefits? All things you need to take into consideration.
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it’s 8 days since AC#4 and 2 days before I get to go back home. I’m not sure if it’s the Zoladex or the stress of the process but I’m struggling with “those feelings” that each of us ladies think about from time to time. I’m scared. I’m hoping my mountain lion is about to become dinner. Going through the first part without the hubby has been hard ( for those who don’t know I had to do my first 4 rounds away from home because our homes roof failed and had water damage and I couldn’t be there during treatment because my immune system would be compromised- 2.5 hrs away from hubby and all I know)
I feel like I’m trying to wimp out on doing the taxol part. Scared of allergic reaction still exhausted after finishing AC. Anxious about when I can have a surgery date to get this damn thing out of me. Dreading possible radiation. Considering ovary removal. Anyone just have an occasional breakdown and cry about the bullshit of it all? You all are handling this wonderfully and braving the mountain lion. I feel like I’m not battling well right now only because I’m scared. If I wasn’t so tired all the time it wouldn’t be too bad. Maybe being home will make all the difference in the world.
Taurus congrats on being brave and beautiful. Casey so proud of ur strength your doing it! Patrice hope you enjoyed your anniversary! I’ve been hesitant to post only because I don’t want to be a Debbie downer to everyone’s progress.
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Rabbit, 2 days!! I will for sure be thinking about you this weekend! I can imagine the emotions you must be going through. You've hit the AC finish line, and will soon finally be going home. But you still have T, surgery, and radiation to get through. It's totally understandable that you're going through all these emotions. I hit a similar wall after hitting the halfway point of chemo on Monday. On Tuesday I literally collapsed on my bedroom floor in tears. I feel like I've been through the wringer, but still have so far to go with surgery and rads, and who knows what's the results will be. You can only take this process hour by hour and expect the rollercoaster of emotions. Hopefully once you are home again with you're hubby, everything will become more stable. Big hugs to you!
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Rad- do not apologize! The best time to post is times like these. Because we all have them, more often than not. The thoughts can be so overwhelming. And scary. There are days or nights where I just cry. Ugly cry. Because it’s so scary. There are so many unknowns. And gosh, to think you are doing all this so far away from all you know?? And you conquered AC too?? You are incredibly strong. But I think it’s ok and so normal to have those down times. It’s like a boxing match. We keep getting beaten down by treatments and bad thoughts. Bell rings. We take the sidelines for water and a pep talk. Some deep breaths. To get ready for the next round. Consider this your sideline time. Cry, rest, and cry some more. We are all hear for you.0
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Rabbit, don't apologize, you are absolutely entitled to feel everything. It's so very much, all of the steps on this journey that none of us wanted to go on. All of us have meltdowns eventually because we are human, and this mountain lion is amazingly difficult in so many ways. So many questions, so many decisions, all the unknown. It absolutely sucks, and there's not one thing any of us can do to change it or control it. It's not fair. I love April's analogy, it is perfect, we keep taking punches, round after round, eventually we gotta take a seat and get the pep talk.
So here it is - you've done this away from home, without your husband and people. This shit is hard enough under the best circumstances. You did the hardest part, the AC, solo, sick and homesick. You did that. You cheered all of us on thru this mess. You checked in on us, gave great advice, and did it all with a great sense of humor. That is amazing, and the fact that you need an emotional breather is not surprising. You've been thru some serious life changing crap, and there's more to come.
Cry, scream, throw things, swear like a sailor, do whatever it takes. This whole thing is bullshit, every bit of it. Let yourself grieve and fall apart. Then get up and keep going. This shit isn't for the weak of heart, but we are here to walk with you. I feel you, and will keep you in my thoughts. You're almost home, Rabbit.
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