Starting Chemo in March 2014
Comments
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So I've been in the hospital since yesterday afternoon; going home tomorrow. Totally what I feared: orthostatic hypotension and tachycardia. I drink 6 bottles of liquid a day, 7 comes back out. Blood pressure drops, heart rates soar (was 170 standing up) , can't breathe; dizzy; faint. Nervous system is now $*@() up. So they decided to do a CT scan to see if I had a bloodclot in my lungs and found a 4mm nodule in a "Fissure" of my lung. I've never had a cigarette in my life. I've cried for a whole day until they came in in a rush to check my heart monitor. So I've officially lost it today. My boyfriend flew in tonight to stay with me until Monday because I was so upset. So am I doing all this for nothing? How can it be in my lung when it wasn't even in my lymph nodes, supposedly? (I had a double, but they only checked the nodes on the cancer side). They told me it's so small they can't even biopsy anything, I have to just keep getting cancer-causing CT scans every 3 months. Heck, why not, I've already had 13. Really, I'm so down over this, I don't even want to check the boards for a while...I need to just hide under the covers with my BF for a couple of days and then try to go to work on Monday. This weekend I'm already on big bag #5 of saline....have to go in again Wednesday for more. I feel like I don't know which will get me first, this heart/nervous system reaction or the cancer. I just can't be up for you guys for a few days....maybe if I get out in the sunshine this weekend. I wish all you wonderful wonderful people well and send you big hugs. Please forgive me for popping out for a while, I won't be much help to anyone right now. I'm just in a state of shock. I thought I could do this, but more and more just keeps getting piled on.
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{{{{{{{{{{{jmg}}}}}}}}}}}}}} Oh my goodness, you poor girl. What a nightmare! I think it's smart to take a break from the boards for the weekend. Go curl up with your boyfriend. Get all the hugs he's got to give. Know that you're loved and we're thinking about you and that you're already in treatment to beat the snot out of cancer. Just breathe and be for a few days, and recover your balance.
Then get back here and let us help support you while you figure out what's going on so that it can be taken care of <333
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So frightening. I am so sorry. Take care. Prayers are going out to you right now.
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Steroids. Not a fan. So, here I am, another woman posting in the middle of the night...
Tuesday, I had my first round of TAC. I want to thank everyone who suggested a blanket from home. Great idea! I have to say, the hospital I am going to has been wonderful. The 4+ hour session was made pleasant by the wonderful staff, and comforts of the facility. My chemo-cave, as I'm now calling it, was very comfortable. I had a heated, reclining massage chair, tv (if I wanted it), snacks, heated blankets, an art therapist (so I did some relaxing coloring), and a massage therapist (who I didn't get a chance to see). I had no problems and walked out feeling pretty good.
I started feeling side effects that first night. The steroids are the worst part because I can't sleep. I do feel completely off. Dizzy, queasy, and exhausted, but hyper.
Yesterday (day 4), I started having pretty bad bone pain, but the nausea is under control now. I am doing a trial specifically about the bone pain and am taking naproxen, but the pain got so bad in the evening that I took a Vicodin. Wide awake at 11pm after days without sleep, I took a sleeping pill, but I still woke up at. 2:30. Soon, my 8 & 10 yr old daughters will be up ready for Sat morning fun! Yikes...
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The pushers were loitering outside of the grocery store again yesterday, but I resisted the urge for a "fix" this time. Had already spent enough.
I woke up yesterday feeling like a cloud had lifted, almost just like my old self. Got to babysit my 2 1/2 month old granddaughter all day, it was so much fun. Then had my mother-in-law over for dinner, got half way through cooking it and I was suddenly so tired. So unlike me.. Hubby did the clean up, I went in and laid down on the sofa and was asleep by 8, woke up long enough to get ready for bed and slept right through till 6 this morning. Now I feel great again. Back to listening to our bodies again, I usually run on about 6 hrs of sleep but I think I'm going to have to learn to sit down and rest throughout the day. Still have my own hair (so far) but I ordered some hats and they came in the mail yesterday, so I'm ready. I still get a little nauseated from time to time and the roof of my mouth kinda feels like it has a coating on it, but food still tasting good.
Well all, hope you have a minimal SE day and enjoy your weekend! We're supposed to get almost to 50 here in Ohio..Woohoo! Gonna have to go out and get some natural vitamin D I think.
Cancerjourney, have you asked for something to combat the effects of the steroids? I take a 0.25mg tab of xanax with mine and it helps so much, keeps the jitters away. Or some docs prefer Ativan, doesn't make me sleey, just takes the edge off.
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jmg58. I hope you fine much peace and comfort being with your boyfriend this weekend.
Nina. I know it is almost impossible to avoid the hair loss. If it happens to her I will just need to switch my cheerleading strategy. I will employ some of your suggestions. If you want a compliment about your behind, ask your husband if your dress or pants makes your butt look big. Unless he is very dense you will get the compliment you need. I was very tempted to compliment you myself but I decided that would not be appropriate. I do not understand all these texting abbreviations so I google searched
. The top search came up a urban dictionary definition. I don't think it defines what you meant, but I did get a big laugh so thank you very much.
MedicMom2. You bought 2 more thin mints even though you had 11 in the freezer!! Wow, I think we could be friends. Since I have used up all my stash I am needing me some mints and my local pushers seem to have moved on.
genny. Sometimes you just have to say no. Those little pushers are hard to resist and their product is so addictive. My wife has had some of the same experiences concerning the "learning" to rest. She is just a go till you drop type of person. Try to rest even if it is just a little. It will help.
My wife did pretty good working yesterday. She was tired and hurting but she usually is anyway. She is also up against the FMLA time clock. We had a experience with this before and where she works, if you can not get back to work after you have used up your time then you lose your job.
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Heroldman, please take a moment to pity me. Unlike you, my husband is indeed very, very dense. If he were an element, he'd be osmium, which is the densest stable element on earth. I know this because in an effort to cheer myself up, I do on occasion google things that might be denser than he is. It's a pretty short list.
If I were foolish enough to ask him to "ass"ess the matter, the best I'd get out of him is a kind of Robert DeNiro "eh" expression.
Also, it's now a bit of a mission for me to find reasons to send you back to urban dictionary on a regular basis.
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Nina, barium is pretty dense, too, just I case you want to feed him some, lol. JMG-prayers for you, girl.
Just a quickie question, does the scalp tingle when the hair is getting "ready" to go? My scalp feels real weird....
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Hi All - I don't even know how I ended up reading this thread today. I usually visit and post on the Stage 2 Club. I loved reading some posts here, the sense of camaraderie and humor are great. I am wishing good luck to everyone going through chemo. Mine was last summer, June-Sep. It was doable but had its hard moments/days. Losing my hair was very traumatic for me. It was the itching, then the hot feeling and then gone. If I could go back, I would have it cut short from day one.
Of all my sources of support for which I was grateful, this forum was the most helpful. People here get it, and are amazing! To those who feel time is not moving fast enough, I would like to reassure you that you will be in a much better place once chemo is over. Chemo does cure cancer, and that is what I wish you today!
Hugs, Nisa
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Hugs back to you, Nisa! Thank you for your kind words and well wishes
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I don't feel like shit today! I'm so happy, or as happy as I can be. Think my chemo is causing me to have depression. Anyone else experiencing that? I had a cold before I started chemo and my onc prescribed me a Z-pack. Well, yesterday I took my last pill from the Z-pack and I still have a head full of snot and am bark coughing.
I can't shake it.Worried about what my WBC will be when they check them again. They were 3.9 (low) the day of chemo. I hope the Neulasta is helping! I hate this cancer thing, I hate chemo, and I wish none of us had to go through this Hell. And Hell it is ladies. Fuck Cancer!
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Jmg58, I hope you see this when you return and read this. I just read a NED report for a woman from a Facebook group I am apart of that was/is having severe problems and her doc had her undergo an almost immediate CT scan. They discovered a 4mm nodule in her lungs too and are not concerned with it. She also had fluid around her liver that showed up on a PET scan in Sept. that is now gone. So, as far as docs are concerned with her, she is still NED and she has the same size nodule as well. So, there is hope. Hang in there!
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Thanks Nisa for the thoughts!
Sinsin - Yay! Glad you're feeling a bit better today. I think depression is a side effect of this whole process. It doesn't happen to everyone, or happen to one person all the time, but it's a very real possibility.
Maybe talk to your Onc about it? I know that more medication isn't appealing for us at this point, but your mental health is important too.
Jmg - stay away, enjoy your weekend. Don't worry about us, we'll be here when you're feeling better, or whenever you need us. I really really hope things start getting easier for you.
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Hi, had TCH No. 2 on Thursday. Feeling a bit tired now. I hate the steroids - give me acne, make me super hungry and wired, sleepless and hyper talkative ... Ativan helped me sleep though, put it under the tongue for fast effect (RN rec.). Today Neulasta pain is starting, was really bad last time, MO rec. to stay firmly on Tylenol, we will see how that goes. Hair: gone. I dreaded it , but when the shower and all else was full of it , it needed to go , and it feels so much better. I have bandanas for home and hats for work. Okay, I guess I will get my groceries done before I crash. Have a good, SE free WE, ladies.
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Kiwi, thanks! I actually already see a psychiatrist as I've been having a chemical imbalance for the probably 6 months before my diagnosis. She currently has me on Latuda and Seroquel but I think I need an antidepressant as well. I do fine until it's "that time" and sadly, that happened on the same day as my first infusion. So, I totally crashed and burned. We can't seem to find something to prevent that and it scares me b/c this chemo thing is hard enough!
Summer, what SE's of Neulasta are you having? I wasn't even aware it had side effects. LOL
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On a side, funny note. I chopped my hair off in preparation for the eventual fall. My 5 year old walks into the house, sees me, and replies "Like the hair Mom! Totally cool!" I wanted the Pink style and instead got Bieber. I hate it. I look like a damn guy! LOL SO, I am actually looking forward to losing it. LOL But his response was so sweet and sincere! Melted my heart. Then last night I explained to him that I cut it b/c I would be losing my hair. He asked why and then replied " Well Mom. Atleast you won't have to worry about combing your hair anymore! That will be nice!" I love that kid!
But thought I'd share in hopes of making everyone else smile too.
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Nina. I will take much more than a moment. I will spend a whole evening having a pity party for you concerning your dense hubby. I have the beer iced down and the grill heating up. I go all out for things such as this. It is fine with me that you want to keep me searching the urban dictionary. I need to learn about all this. Now about that urban dictionary definition regarding
. I should warn everyone that they might not want to look up
there. It is not a pretty sight.
Sinsin. Kids say the darndest things. They say the sweetest things too. The story made me smile. What he said is for sure 100% male. "You will not have to worry about combing your hair." A simple solution to a complex issue. Most often us guys can be as simple as dog doo doo.
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Sinsin, love the story of your 5 year old. Definitely brought a smile to my face!
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Ok, now my scalp is feeling weird, got little bumps that feel like zits and it's itchy... only been 9 days since chemo, I thought I had 2 more weeks. I feel pretty good except I feel like I worked out, but I didn't. Kinda like I went out and raked leaves all day or something...but no reason to be sore. Ah well, and so it goes.
The little pushers lured me in again, a fix for hubby though, I'm not really a thin mint girl. He ate 1/3 of the box then told me to hide them. Of course 20 min later he demanded I give up the hiding place... ahhh, I guess that's what I get for feeding his habit..
sinsin, so cute about your 5 yr old, sounds like a future engineer, cut off your hair, no need to comb it...simple... what's the problem?
jmg, hope you're feeling better, we'll be here when you get back.
And to everyone else, hope your Sunday is the best one of the week,, Xanax is kicking in...thank goodness.. goin' to bed nw.. sweet dreams to all!
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Anyone have an issue with low WBC count and chemo? Mine dropped to 3.9 the day of infusion (was 5.2 the month before) and I had a cold I was starting to get rid of. My onc prescribed me a Z-pack to start that day and now I have finished it and my cold is back in full force. I'm really worried my WBC is even lower even though I got a Neulasta shot the day after infusion. Anyone else experience this? The fact that my WBC were low to start freaks me out.
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Wide awake at 3:30...laid there till 4:30, now I'm up drinking chammoile tea, oh I just wish I could sleep.
Sinsin, sorry about your WBC, I haven't had one taken since my 1st chemo, but feeling fine. My hubby just got his cold back that has been toying with him for like 2 months. He even took the z-pak at one point. I'm a little worried about it but since I already had it, I'm hopefurl it will stay away. Keep a close watch on your temp, if it gets to 100.4 they say you should call your onc immediately.
Hoe all you's are in dreamland, just thought I'd check in since it seems to be evading me at this point..night night, sleep tight
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sinsin-my 14 and 17 yr old girls said the same thing about my hair!!! I have spent years (literally) hating my curls and about a 2 years ago decided simply to embrace them and have finally found the right combo of goops. Of course, now I'm going to be saving a lot of money for a while. My sis-in-law told me it's my dad (esophageal a w mets at 53) twisted sense of humor. :-)
I tried on wigs. Yuck. Apparently all the curly dark-haired women that get cancer want to have lush blond locks or spikes. I ordered one (ordering was free) to try out that sort of looks ok in the book, but hats and scarves are winning out at this moment. My department scheduler suggested making it fun for my girls and letting them help buzz my hair when it's time.
Moms and dads.....my 13 yr old (Jocelyn) is afraid she doesn't have a heart. She's a TOTAL introvert (amazingly completely 100%) and processes things so differently than most people. She loves her friends but can handle only a couple of hours before she wants out. Her favorite place is alone. Which I get. And normally I am ok w as long as she interacts w her friends and us as well. She doesn't want to talk about cancer or what's happening. Which is normal for her as she eventually tells her sister what she's thinking. Who tells me. And then I know she's ready to talk. But not about acncer yet. How long do I let her stew? Middle school is tough enough and add moving to high school, cancer, and big sis transitioning to college in a Few months I don't want her to flounder. I don't want to make her uncomfortable by making a big deal aBout it but I don't want her to be hurting and stressing inside either. Her grades remain straight As, and I know she's happy at school esp as her favorite teacher (the 7-eyed scary-mean math teacher with horns!!) is back from mat leave.
I hope all you east coasters got to enjoy few SE and the glorious weather we had yesterday. (Well..you had...I worked 0700-2000 but I did go into triage and peek through our plexiglass cage window into the waiting room window and saw sun!!!!!!!!). Snow's a-coming!!!! It's my fault sorry. Every major milestone w CA has been accompanied by a blizzard.
Enjoy your Sundays! I'm thinking it's time for another Sundae Sunday at work today. Going to go find an ambulance crew who will make a grocery store run for us.
Deb
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medic mom... I'm an end feb girl who lurks here too. Since you already had surgery you maybe. To reassure her that the cancer is gone. That what you're undergoing now is just further protection and unfortunately these are the side effects. But they will be gone and you will be healthy!!
Just my two cents. I have a little one who i very sensitive and was having a very hard time. He was very afraid. And I just kind of broke down like that for him. He seemed to feel better understanding that after surgery this cancer was gone.
Good luck!!
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MedicMom- My 17yo son has always been an introvert and I've learned a few things. I def don't push on ANYthing he doesn't want to talk about. I always tell him I'm here for him always, even to talk about uncomfortable, embarrassing things. I also learned that when he's hanging around me a little more then usual that means he's actual more open to talking. Then I can casually ask him something. He has opened up to me with so many big subjects this way. He broke down in front of me once, about a girl, and I almost didn't know what to do. I hugged his shoulders and did NOT say "there are other fish in the sea" yada yada. He just had a good cry about it and I told him that sometimes we love someone more than we realize or admit. Anyway, hopefully this helps with your daughter
Genny5775- I have had such a hard time sleeping since chemo, and then I get headaches, ugh. Makes it really hard to work, too.
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Ali- stopping by from chemo December board currently:). I did taxol first- 12 total. Then, I am currently doing AC. I had my first one March 12th. I did not lose my hair until taxol #5. I cut it pixie cut week 2 and saved my 15 inch long ponytails. I am very patchy right now, but I still have hair. I still have to shave my legs- grrr! One side effect I was looking forward too lol! Taxol was a breeze for me. AC has not been that bad, but 3 more to go.
I do not get the neulasta shots. They have not said anything about them. My counts have always been up maybe. Anyway, just dropping by because I started a new chemo in March and wanted to follow along with anyone doing AC. In my December board, I am the only one who did taxol first then AC, so everyone over there now is doing taxol. Hang in there ladies!
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oh! And I haven't had any fingernail issues! Knock on wood!! I didn't ice them either, but wear Sally Hansen clear polish. I take it off once a week and reapply it! And. No mouth sores either. I use Arm and Hammer's toothpaste. Not sure if I am doing something or just my body, but wanted to share and give you hope:). I do feel like a ran a marathon in my legs a lot now. My calves feel it the most. I guess that and the sleepless nights/holy hot flashes are my biggest complaints so far. But!! The taxol treatments already shrunk my internal lymph node that they found by 50%! I had a BMX first so that lymph node was found after and thankfully caught!!
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Thanks so much for jumping in, Jodi! Thursday will be my 3rd Taxol. So glad to here it shrunk your lymph node and that you're not having nail issues. I have really strong nails so I'm hoping, and I'm not icing, just taking a chands. I am suffering with belly pain, insomnia and migraines. I'm really prone to migraines so I was afraid of this. I am wondering if my hair will shed soon, my scalp is rally tender. Surprised to hear of someone doing the regimen like I am doing, thanks for your words of encouragement.
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Ali- I would get headaches too! I being treated at MD Anderson lol! So when you wrote earlier that your Dr. Is following them - I was like Yep! Everyone almost there is doing the same as me and you! Thought that would make you feel better since it seems different on the boards a lot. Good luck! You can read the December chemo board to see what I had issues with during the whole thing!:). Stomach issues were just the first two treatments after that I didn't have that anymore.
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Wow, that's so cool! Thank you and I will check your board. I'm all the way up here in Maine so I feel lucky that I have a doctor who wants the best for me. He's a great German MO I've worked with for years.
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Hi there, everyone! Happy Sunday!
Medicmom, I have a suggestion for your daughter: she might find it easier to write about how she's feeling than talking, because writing permits her to take her time and doesn't ask her to deal with immediate reactions. Maybe buy her a special journal that the two of you can pass back and forth to each other several times a week. You can write a paragraph or two about how you're feeling and offer her reassurance, and she can write back to you with any questions or thoughts she might have. You both agree up front that you don't have to talk about it as long as you're writing about it, so she knows you're not going to come at her when she's not prepared to deal with you. She doesn't have to write in it every day, but you tell her you'd like to hear from her (2? 3?) times a week, and that you promise you'll always write back. Make a special spot for you to leave the journal for each other (maybe your bedside table and her desk?) - that way, she doesn't have to hand it to you. And to make it even easier on her, tell her you're only asking her to do this for a month. After that, she can write in it whenever she feels like it and you'll answer when she does.
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