Chemo starting November 2018
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I'm just smiling. Kiss that kitty. Nice to hear from you ladies.
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I'm just smiling. Kiss that kitty. Nice to hear from you ladies.
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Hi! I feel silly asking this...but when all the hair is out, how do you wash your head....with a moisturizing body wash or shampoo??
Hope everyone is having an easy day!
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I feel like I just emerged from a cocoon of pain these last 2 days. I finally feel human again. I certainly think part of the pain was not drinking enough. I don't feel like I was dehydrated, but I know I wasn't drinking as much as I was last week and over weekend.
Head washing - I use either a moisturizing body wash (Dove sensitive skin or St Ives Oatmeal and Shea butter) or Aveeno ultra calming foaming face wash.
Lotion after shower - lubriderm sensitive skin lotion on the head and Johnson & Johnson's creamy baby oil cocoa butter on everything else. Really dry days Palmer's Cocoa butter formula.
Advocating and becoming "that" patient - do it, be it. I would rather have a patient that advocated for themselves when concerned about their care than someone who didn't feel like they got adequate care because they thought something was lacking. (Catch 22 right?). Working in the health care industry - yup, there are pain in the a** patients for sure - all of them have taught me more than the 'go along to get along' kind....
I try to have someone with me at appointments (and go w elderly relatives to theirs) because everyone misses something. Having someone else there is a good thing.
I appreciate more than ever all my 'tribe' who have listened when I've needed to whine, been a shoulder or an ear, a helpful hand bringing in the groceries or just being 'present' in whatever moment I am having.
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MaddieB - I know that pain and it’s awful. I tried explaining it to my husband last cycle but ended up just saying I have no frame of reference or words to describe the whole body, consuming pain. Especially since there is no source other than chemo and no way to find out a way to prevent it. I’m glad you’re on the other side. My pain days will start Saturday. Hopefully increasing your hydration will also help.
For head washing I’m using aveeno baby wash for head and body. I also moisturize my scalp with fractionated coconut oil.
The doctor changed my nausea meds to Ativan a kytril. They used the kytril instead of the zofran with my infusion and so far no headaches. I told the oncologist I was ok with muscling through some nausea but I needed a med that could at least meet me in the middle without ruining my quality of life. It was an a productive appointment. My infusion went off without a hitch - a real pleasure after my previous reactions. I slept through most of it. My oncologist is pushing my last AC back an extra week to accommodate the holidays and I feel like it’s the best Christmas gift ever. 3 whole weeks to recover! I’m going to be able to eat so much that third week lol. It’s truly the small things in life.
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Hi all! Just stopping by to say "hello"!
It is so good to see that we all are hanging in there and it seems we are getting better with the SE for the most part. I had A/C #2 yesterday and decided to stay home from teaching today and tomorrow. I'm weak and brain foggy, and just want to chill.
Exercise?? I need to so badly! I'm good about drinking water. I always do. As for the walking, I really need to do that. I just feel like the poisons in my need to be circulated out of my body. They started a walking group at work for me. We walk around the gym for 20 minutes every day after school. With Dr appts and treatments, tests, etc. I've only worked 1 day this week. At least I can drag my hubby to the grocery or Walmart to walk around those places, but I know my heart rate needs to be more. (If I talk about it here, I will get it done...thanks for letting me vent!)
My hair is coming out today. Not in clumps at all, but I can finally see it starting to come. I have beanies, hats and a wig. A friend's sister is a burn victim and recommended this wig place online: https://www.paulayoung.com/category/new.do?utm_sou... I ordered one and am pleased. The wigs can be so expensive. She said that these are the best value and best quality, so I took her word. Another friend said she paid $500 for a wig. I don't see that happening! I guess if my hair continues to fall out, I'll get it shaved (do you guys go totally bald or shave it really short?) and try the wig.
Love you guys and your continued support and positiveness! Let's Kick this Cancer's Ass!!
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Not really a huge fan of talk show stuff, but waiting for one of my sister for breakfast, started watching Kelly and Ryan and they had Grace van deWaal (sp?) on singing a holiday tune. This girl is amazing. Watched her online doing the America's Got Talent (or something like that) a few years ago. Really looking forward to seeing what she does with her talent in the next 2 decades. Already it seems like she has grown into her voice and confidence much more than when I last "saw" her.....
Good to hear from you Duncmelsmom! I hear ya about the exercise. My husband the last 3 days has done the dog walking in the mornings but I think I've pulled myself out of that pain hole, this morning was a good brisk-ish walk.
Having a hard time getting into that holiday spirit however. Work potlucks which I LOVE and usually do 2-3 items, I will be missing this year... I have an apple crisp in the oven right now and we'll eat on that for well over a week. Good crunchy appley goodness..... Other than apple crisp the only thing that sounds remotely appetizing has been canteloupe. MB1
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It is nice to hear from everyone. Duncelsmom, we just put the husband's hair trimmer on the lowest setting, without one of the clippers I guess, and buzzed my hair all off. It is not going to grow. Half of it has fallen out, but not all of it. Isn't it nice you ladies are all walking together, that is wonderful!
Maddie, apple crisp actually sounds wonderful! I hope you have a nice weekend with no side effects and some sunshine and are able to take the dog out on a walk. You're right on the holiday spirit thing! I will have to listen to Grace, I'm not sure I've heard of her, but I do enjoy Christmas music.
Hazel - I'm glad you are getting an extra week, especially during Christmas, that is awesome!! Sometime, if you feel up to it, you'll have to tell us about metaplastic TNBC and what exactly that means, I have often wondered.
My stepmom called me last night and mentioned Christmas. We went to their house at Thanksgiving (an hour drive), and I am going to really disappoint them, but I have no plans of leaving my house at Christmas time. My next treatment is December 19th and I am thankful we have a couple of days off work so I have a couple of extra days to rest. I am very fortunate that a couple of my co-workers have provided my husband and I with dinner. One day, when this is all part of my past, I hope to repay this wonderful thing to do for someone. If my stepmom really wanted to see us and be helpful, she could do the same thing and make the drive instead of asking us to. My parents enjoy having a few drinks, and I used to enjoy that as well, but these days, alcohol is not a part of my diet, and honestly I am probably not as fun to be around. If given the chance to get well, I don't know that I will return to my happy drinking days either. I think I read somewhere drinking beer can cause estrogen production. Sorry to complain when we are all going through our own journey.
I am hopeful in this last week to make some cookies this weekend, do you all enjoy baking Christmas goodies (and apple crisp!)? I want to be as productive as I can be when I feel I can be productive. Thank you for listening. I hope everyone is doing well, it is nice to hear from everyone.
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I really slacked on the exercise during cycle 2 but I'm hoping to do better this round. I gave myself a pass on spin class because just standing in the bathroom brushing my teeth gets my heart rate into the 140's. I end up spending most of my days feeling like I'm getting a cardiac workout just doing normal activities. Usually the heart rate gets a little calmer around day 11 so the extra week I'll get before cycle 4 will let me bump up the activity hopefully.
Today I feel better than I could have possibly hoped. Usually my chemo bad days start right away so I'm enjoying this while it lasts.
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So..my hair started falling out last night and tomorrow I am cutting it off. I hope that relieves the prickly, little stabbing feeling. Another site for caps/scarves is hellocourage.com The owner, Denise is very sweet and helpful-we were emailing back and forth. She has nice selection and prices seem good.
SInce my blood count was good, my dr said I can go back to Zumba (no gym..equipment is too germy). I went to a class yesterday, it felt great, mentally and physically, even though I only did half the class!
Maddie..thank you for the head washing and skin care tips! Keep feeling good!
duncelsmom...thank you for the wig site and it sounds like our hair is on the same schedule! You have a great support group at work!!
Hazel...glad your infusion went well...feel good! Thanks for head washing recommendation! I also am getting a longer "break" time between treatments due to Santa's visit...my next is dec 26th.
Everyone, keep feeling good! Remember you have friends here to lean on!!
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Flower216 - Thank you for this caps/scarves site, I will check that out. Congratulations on your blood count!! I've heard of Zumba, maybe I will watch some of that and see if I can try it too. Thank you for your words of encouragement.
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I apparently really messed up spelling Grace's name - here is a YouTube link.
Flower - the prickles definitely eased after shaving, didn't completely disappear, but definitely felt 1000 times better!
Just a quick update after bloodwork and meeting w onco today - apparently my pain hole was due to the Neulasta still; I had never had the pain come on that late before. All of my other side effects are related to the steroids during infusion and steroid pills after chemo. Onco says we're going to reduce the IV infusion of the steroid and half what I take in pills for the last A/C and if all goes better, do the same or drop it completely for the taxol (paclitaxel) weekly infusions. Woohoo. I may get my brain back, my sleep back, my focus back, my 'hmm smells good oh my goodness doesn't tasted like dust' back, my walking more than 1/2 mile with the dog without losing my breath back!!! MB1
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Three days into round three and I can’t think of a thing I want to put near my mouth. Can’t get on top of the nausea today. Whine whine whine. Tomorrow will be better.
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Maddie, glad you are getting things straightened out where you might feel better, that is great. Thank you for the link, I will go and listen.
Lizzie, I can totally relate. Take your nausea medicine, and keep taking it, as my nurse would say. If it doesn't help, call your doctor and ask for help. Hard boiled eggs seem to be easy on my stomach, maybe it would be for you. Try to eat something, if you can (I sound like my family). Popsicles, toast, bananas, Jell-O. Hugs girls. We shall get through this!! Drink drink drink.
I'm going to a bridal shower tomorrow for my husband's nephew's fiancee. His mom died of breast cancer before he graduated from high school. I am honored to be invited.
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Hi All,
I've been offline for a few. I have been able to manage the nausea a little better and eating more. Have not been taking the Zolfran much, cant take the headaches. Drinking lots of fluids and eating has been doing fine for me. I just got my 2nd infusion of AC-T very nerve racking when more of this poision is in my system. I'm a little more tired. Who knows what side effects will occur now with more in your system. I am just counting down the days when I will be done with my last AC, I hate it. Next battle will be Taxol. Hope that is more manageable. I can feel my lump is slightly smaller which starts the debate in my head for lumpectomy or mastectomy since I have a triple negative breast cancer. Decisions decisions...
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Hope...Glad you are doing better after this treatment. Isnt it amazing...the education we got (and didn't want) in just a matter of weeks. We have learned many new vocabulary words, had to deal with our emotional roller coaster and make some of the most important decisions of our lives. We deserve an award...or at least a piece of chocolate!!!
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Check on the chocolate - I like where your head's at!!!!
From everything I've read, folks that go thru A/C then T (Taxol or Taxotere - different drugs but same "class" chemically) - the A/C is "worse" in terms of side effects, and generally the T parts is easier.
Here's to a good weekend for all!!!!
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Here's looking at you kid, a destruction of chocolate!!!!!
(Ok and a random turkey jerky stick)
I hope you ladies had a better food day than I have so far.... Chicken and wild rice w veggies is planned for dinner so that's good right?! MB1
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HopeBry - what was your Zofran headache like? With my first TC (the only one I've had so far), I had the WORST six day migraine. Finally told my doc to admit me with an IV painkiller, as nothing else was working. We don't know what caused it, but I'm suspecting anti-nausea meds. I'd rather throw up every 15 minutes than have that pain - I didn't sleep for 72 hours it hurt so bad! I'm hoping he can find an anti-nausea med that doesn't cause headaches. I can't do that again! Next cycle is this upcoming Tuesday. I sailed through the first one except for the headache. Hope this one is just like that with no headache!
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Link from the "dumbest things people have said to you" forum from August 2018 from user Moth.
http://nancyspoint.com/what-does-telling-a-cancer-...
Interesting.... I feel like I can say something like "stay positive" or "wow you have a great attitude" to someone that has been through this cancer thing before or is currently going thru it (like us!) with the expectation and realization that not every thought is positive, that I, like many of you, grieve the loss of body parts and confidence that we once may have felt, and that sharing how we feel and every part of what we feel on forums like this is crucial to some of the healing process. But hearing the positive attitude smchumck from others does feel exactly like the weblink for me at times....
It feels like a total paradox. Saying and hearing it from a BC endurer vs hearing it from a non BC person feels way different to me.
Just my thoughts over tea this morning..... MB1
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Good morning fellow BC warriors!
My wonderful hair dresser shaved my head yesterday. It doesn't look so bad, but it really has hit me emotionally. I have been crying for 2 days. I have a wig, beanies, hats, etc. but can't figure out how I'm going to go out in public. The wig just doesn't seem right. Everything draws attention to my head. I'm a teacher and needed today off to regroup, but by tomorrow, I have to make a decision!I have a mild headache and have had one. I can't imagine the headache Hope and Jennie have described. Yikes!
I hope y'all have a fabulous Monday. My son and his expecting wife are arriving Wed from AZ (we're in GA) for 2 weeks and I'm so excited I can't stand it. He's in the Army and they're heading to Germany for a couple of years in April. I plan to make the MOST of this visit with them!!
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I love the chocolate picture, Maddie, yes!! My week before treatment is about the only week I even want food.
Jennie and Hope, I'm so sorry about the headaches. I hope things get better with your medicines so this is not a problem this next time. I'm glad you are bringing it up with the doctor, they are supposed to make things better for us. Good luck on Tuesday, Jennie, I will be right behind you with treatment #3 on Wednesday. Think spring - we should be done by then!!!
Flower, talk about vocabulary words for sure. ER, PR, HER-2, things I knew nothing about. I used to be a medical transcriptionist (before the electronic record wiped out that occupation) and typed for cancer doctors in Wichita, never knowing I would personally get to experience TCHP. When my doctor told me, you'll be getting Taxotere, Herceptin, etc., I put those letters together and knew I knew them from typing.
Maddie, I got in a conversation with my neighbor last week where she asked me, are you going to be okay? I told her with a little laugh, I hope so! Sometimes people just don't know what to say, I guess. I have probably done that myself. This lady has a PhD and drives a Mercedes, and I will always remember her words when my other neighbor's daughter was killed in a car accident a few years back- "how do we know she went to heaven when she did not go to church?" I was talking to my son about this and his comment was, even someone with a PhD can say something stupid. If I have a bad day, which can happen, and I run into someone that asks me, what is going on, sometimes I cry, and I absolutely hate that. I don't want anyone to see that. I do not feel sorry for myself and that is how that looks. A lady who recently lost her mom mentioned to hold your breath when you don't want to cry, so I try that now. Some of my friends, who have lost a close family member to cancer, do not come around me anymore now. I guess we can be a reminder, it does remind me of my mother and what all she went through - she died of colon cancer when she was 54. I can remember when I turned 55 this summer and how I thought about being older than she ever lived. Thanks for sharing that article. I wish I could be a super-cancer-survivor and be positive and strong all the time, but it does not work that way for me. If I want a good cry, I try to do it after my husband goes to work. He admitted to me, after treatment #2, the difficulty of seeing all of our color drain out of our faces as we get treatment. He gets scared too. I'm holding my breath now, practicing, as I feel a little tearful telling you that. Don't get me wrong, my husband is my rock and would move the earth for me if he could do it. I think I've seen him cry maybe 3 times the entire time I've known him. He is also a human.
Thanks for letting me share things here I don't dare tell anyone else. Hoping we all have a good week. Remember to drink as much as you can. Love and hugs to you. Lisa
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Duncel - just saw your note. My husband was talking to his brother on the phone yesterday about our hair, well, our hair loss. His brother's wife died of cancer a few years back, and they were relating how traumatic it is for us when we lose our hair. Wear what is comfortable for you, and try and not give it a second thought. I have wigs and hats and am more comfortable in a hat, but you do what makes you feel okay. Hugs.
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Hi Ladies, so sorry for all the challenges everyone is having. I just keep thinking about how I felt good and want to again. It'll be over before we know it (I keep telling myself that).My stylist shaved my head on Friday and I picked out a wig at ACS today. That thing itches, I think I'm going to be wearing bald proud and loud.
Off for round 2 of HTCP tomorrow. Lesson learned to take Zofran every 8 hours, no just when I feel ill and to use the Imodium. Saw the oncologist on Friday and he asked me if I'm still running. Told him no, i had residual neuropathy in my foot from the back surgery and it seems to be aggravated by chemo and I'm afraid of herniating again. Also told him I don't have the energy and he said the fatigue was likely to get worse
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Here's with the wig and my current situation. Of course, you have to see kitties from me!0 -
Look at that beautiful smile you have, beautiful lady! No wig needed, but nice to have "just in case." Try a stocking over your head maybe. But you don't need that at all. Beautiful! Good luck tomorrow with treatment. Drink drink and drink!
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uh oh - kitty alert! Lots of kisses for those two sweeties. The wig looks lovely as well!
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runningcats You really look beautiful! I’m having such a hard time after the 3rd infusion of TCHP, nausea never goes away, no appetite, and I’m on day 11 , I really don’t know what to do, I never feel good
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Thanks ladies. I'm lucky i'm In SoCal so it's not too cold 60-70, but I'm a freeze baby. I went to my car yesterday w/out a hat and it was chilly.
MissouriCatLady, Newfromny, and Duncmelsmo are you all oing neoadjuvent? If so, have you noticed shrinkage of the mass? I'm just feeling bumpy now.
Newfromny, I feel you. I'm down 15 pounds from when this all started, still get nausea and just have no motivation/desire to do anything. I've been eating junk food, I know if I cook I'll just put it in the fridge and never eat it. I'll worry about real nutrition when I'm through this. Also, When i lost my appetite after the infusion, I'd eat chocolate protein bars and drink boost/ensure. Anything to get some calories in me!
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Yes I’m neoadjuvent it seems it’s shrinking, but I’ll find out more this Friday when I go for an ultrasound. I’m also drinking a lot of my calories and eating whatever junk food I can manage
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