Starting chemo February 2018
Comments
-
Ha ha, I didn't intend to imply the nurses were mean, just that they've seen it all. All of my calls up there can be boiled down to some version of the following... Me: I'm panicking, should I be panicking? Nurse: Not yet, but call us back if it gets worse. Me-OK (never gets worse, never call back, lather rinse repeat with new symptoms in a few days)
AMBurt-I'm so sorry you're having more port trouble. Goodness
moth-your description of the shakes is spot on to what it feels like for me-like getting off a forceful rollercoaster
What is the deal with chemo drying you out so bad? My eyeballs have been on fire. I've tried 8 different kinds of eyedrops 3 of which are prescription kinds and NOTHING is working!!! For at least an hour every day around mid-morning I can't keep my eyes open for more than 10 seconds. I wind up just sitting at my desk waiting for it to stop hurting. My skin is looking downright crispy too. I told my husband I feel like I've been dusted with silica gel. No amount of slathering on oils or lotions or drinking what feels like gallons of water is fixing it. How can I feel water-logged and mummified at the same time?!! UGH!
Oh, and they gave me ativan as an off-label use as part of my nausea backup meds, but now I'm having to take it for the actual anxiety before I do infusions because I've developed a really bad aversion to the feeling/taste from the saline flushes. She had never heard of that reaction but her nurse (who has heard it all of course!) had seen it before in other people. It's the dumbest thing considering all the other stuff but just thinking about it right now is making me cry a little and feel sick so I'm going to go eat a graham cracker and go to bed.
0 -
cbok - I can totally relate to anxiety pre infusion. Just the smell of the chemo room makes me start getting nauseous & nervous. I think we all have our little triggers (yours is the saline flush, mine the smell, I’m sur others have their own triggers too). I need the Ativan for sure! It helps calm me down and get rid of the nausea.
0 -
cbok and pbello- I’m with you on the saline flushes and smell of the chemo room. They also make me nauseous. When I’m at the doctors office for a followup appt and blood work and I glance into the infusion room, I get nauseous. My aversion to this whole process must have gotten pretty bad. I guess our bodies have decided “ chemo makes us feel bad-avoid”. Wish we could.
0 -
Thanks Pbello...infusion was quick and easy this time around with the PICC!
Called in to change up my Family Practitioner Oncologist (thanks again Indahood for the tip).
Not hoping for a repeat of days 3-6 after last infusion...post steroid crash and burn! Although, it seems pretty common from what a lot of you are saying.
AMBurt, was a picc not an option? That's too bad about having to re-do.
Meanwhile, my order of two hats seem to be hung up in customs for the past few days. Don't really want to buzz my head until I have something to put on...
moth, I'm going to check out The Crown...I've already finished up watching Shameless and The Handmaid's Tale.
IslandJane, I'm with you...my wig looks better than my real hair..it even has highlights which I've never splurged on. I also had round 2 yesterday...looks like we're on the same schedule...
I have to do the daily filgrastim shot at home starting on day 2 for 8 days.
Well, I'm off to make good use of my steroid energy boost and make a protein packed beef stew with a side of brown rice!
Have an awesome day everyone...!!
0 -
momlovesherkitties: From experience I would just have your head shaved. I did what you are thinking about doing. I had it buzzed to about 1/2. It got itchy and even the short hair still fell out and got everywhere. I was so glad when I shaved it. It felt so much better. What also have found is that I still have to shave it about every 2 weeks too keep the little patches of hair that are still growing from becoming irritating. Good luck.0 -
AMBurt so glad you’re home!! Thanks JLove! My hair actually started shedding pretty badly tonight (day 14) and I already have an appt to get it buzzed Friday so the timing worked out. I read several places that being gentle with your hair before losing it may help to go slower so I may have helped it along as I’ve been keeping it pinned back and in a wig since Monday (I didn’t want to go back to work with it short and then come back with long hair the next week). I’m ready though- I don’t want to lose my hair but the stress of when it was going to happen was too much. I hope everyone is having a good week!
0 -
hello everyone,
I went to a feel good look better workshop and they talk aboit the beauty 4 u store where you can buy less expensive wigs. I bought 2 wigs totally different style than my current hair (which are in need of a cut)
I am not ready to shave my head but this morning there was more hair than usual in the shower tub after washing my hair...
Next chemo is Friday. Curious to see how I will fare without fasting.
AMBurt I was so shocked to read that your second port did not work, it is unbelievable.
I don't have anxiety about the infusion room. Last time, chemo was good on me after the fasting because I was so bad before it. Then, i don't have the needle anxiety because there is none with my Groshong catheter. I am just wondering how I will remove my neulasta injector as my fake husband is in Belgium. Any advices?
Can you also tell me when you started to loose hair under the armpit and facial hair?
Cheers to all!
0 -
Jlove- I hope you are feeling better. I am also a nurse and it looks like we have a similar stage?
I amStage 1 - T1c, Grade 2, node neg, ES+PR+, Her2neg, 1.6 cm IDC, age 62. My Medonc recommended TC CHEMO,radiation and aromatase inhibitors.
Wouldyou share how you made your decisions for treatment? That's the hardest part for me. FYI my Oncotype is 29. I had lumpectomy 1/29. Thank you
0 -
Lolette where is your Neulasta injector? Mine was on the back of my arm and the video said I should have someone there with me to watch it but the nurse that I was fine as long as I could see it in the mirror, which I could, or if I turned my arm around a little. My husband was home when I took it off but I did it myself because I could reach it and I had no problems.
0 -
- Hi ladies,
- I’ve been reading, but haven’t posted just because well idk.
- Had first chemo 2/21, skipped second due to snow storm. Had my 2nd yesterday and it’s worse than first as far as nausea and I did vomit. Didn’t sleep all night due to the steroid I assume. I refused to take the Zyprexa which they gave me for the above symptoms because it’s an antipsychotic and I’m allergic to it. Plus I was very upset that being I made sure I told them that that they would give me that RX.
- Being in the 2nd best rated cancer center in the Nation I’d expect better doctor care to what I told them. But I caught it despite it ha omg been written by its generic name.
- Why they give these drugs when others are available upsets me. It would just make withdrawals terrible from such a drug.
- So instead I have the Emend via IV which is suppose to work for 5 days. And I’m taking the steroid, but 4mgs less than they said.
- I think I’m babbling sorry.
- Also the port issue bothers me. It’s not necessary according to Sloan. They don’t give anyone a port and I’m happy about that. Would’ve refused it anyway.
- I know seems I don’t follow doctors orders. It’s just that I know how they are and one must question everything they try and give you. Research it and find alternatives. I mean seriously an antipsychotic for nausea. No way rather vomit.
- The hair thing. Well yes I did stress over my long hair from diagnosis. It started falling I believe day 18 and quick thereafter. I broke down crying at work and went to get it cut short. But 48 hours later it was all gone. I’m over it now kinda only if I don’t look in the mirror. But if it didn’t happen to you yet, I agree with the ladies on this site who say don’t stress too much because this too will pass.
- I went and bought, silly me an $850 dollar wig. I hate it and won’t wear it. They won’t take it back. The lady took full advantage of my tears and stress.
- But anyhoo I rather wear my hat with hair. I also ordered a lot of halo hair which I can wear with hats or beanies rather than a baseball cap. I never wore hats. I spent well over 2,000 so far on head gear, so yes that was my greatest concern. Silly me. But with summer coming and all and if you didn’t buy a wig, I’d suggest not to right away. Buy something easier for 1st timers using wigs. but halo hair or hats with hair.. much easier and cooler.
- Well sorry for writing so much. Must be the steroid rush.
- Stay strong ladies. I’m so happy to meet all you brave women. Together we make each other strong.
- God Bless you all
0 -
Hi All,
I’ve been checking in on you daily, sympathizing and sending well wishes your way. I had a lil 2 week break from the cancer madness but now it’s go-time. I had my chemo class yesterday. Thank goodness I’ve been reading your posts and doing research. I was armed with knowledge and questions. Still felt teary and overwhelmed and cried on the way to Target to get my stuff. My first infusion is this morning- countdown 2 hours. Just spent an hour getting my rings off. The drug I took last night must have caused swelling/water retention. Would have been nice to know! Found out I will need a port. Yuck. This whole thigis just yuck. Decided I’m calling chemo my “kick-ass drip.” Hoping for inner calm and peace during my 5.5 hour drip.
0 -
loki- hi, yes similar diagnosis.. I am 34 yrs old so sometimes the treatment can differ alot do to age, postmenopausal vs pre, etc. I did a double mastectomy bc basically was scared, and wanted any percentage better for reoccurance, so even tho it was small, did that with reconstruction. My onco type was 24, so moderate, so bc of age and that, they decided chemo wwas best choice. So TCx4. No radiation as I did the mastectomy and it hadn't spread. Will need to figure out estrogen suppressant plan in coming months, probably tamoxifen ( if still pre menopausal). But could be an AI , could get lupron shots, could get hysterectomy in future. Sounds like our drs are on same page! Good luck with treatment 💙
On another note.. Ativan worked wonders for me for nausea, and helps me sleep through post treatment on my worst days. Zofran gets me really constipated which aids in other issues, so I choose Ativan on my bad days( usually 2) then wean myself off.
0 -
lolotte - love the wigs! Hope you manage to get someone to rip that pod off you! I don't get a pod - just a syringe to do myself in the stomach.
welcome, Loki - I hope you find calm regarding your treatment protocol. For me this was one of the things that I normally would want to backseat drive but at some point I just realized I wanted to let go of that & I said "these people went to school for.ever. to become oncologists, they know the stats, they know the research, let them worry about it and figure it out". The plans they present to me have always made sense, we're on the same page in that 5-10 yr stats don't interest me because I want 30+ years, so we're hitting things hard.Downdoggie - welcome & I hope you're chilling in the infusion chair and all is going well.
idkidk - I'm finding it really interesting (& odd, frankly) how different the various protocols are. I get emend, dexamethasone & zofran as the main anti nausea meds + reglan prn. I don't have a port either.
I've discovered I don't care about hair at all. I love my bald head lol
Happy Thursday everyone.0 -
thanks moth and all of you. It’s really helpful to just read others experiences and how they are dealing with things. I want answers that just aren’t out there. I also don’t want to over treat.....but am concerned about recurrence. Really scared to do chemo.I plan to talk with Rad Onc Mon and make my chemo decision then.
0 -
thanks jlove for sharing. It is really helpful for me to hear other thought processes. You are young (this must be hard!) and yes the treatment and decision making do differ. I’m going to see rad Onc next week and then will decide one way or the other about chemo. Scared to do chemo and scarednot to. 😂😦. I think I’ll be able to sort out in the next few days. Best to you on the rest of your treatment-
0 -
Hi all, just checking in to read how your all doing. I have been working this week and it totally wears me out so haven't been here to post. Felt pretty good all week. They keep bugging me to get a port so I guess I'm getting one next Wed then chemo Thurs, ugh for some reason I just don't want that port. Ok will check back later, gotta get some sleep. Hope you're all doing OK. (as well as we can be anyway)
0 -
moth- I felt the same way about taking a backseat. I called for sooner appointments and called for what's next, how can I get started quicker. People ask my husband, not me for some reason, if we got 2nd opinions or were going to find the best hospital and drive there. We live 40 mins from 2 great hospitals, so there was never a worry in my mind about treating whole body chemo first, and my hematology/oncology dr did his fellowship at the other hospital, and surgical is head of the entire women's health center.
I finally have genetic testing nailed down for April. I will have had 5/6 PTCH rounds by mid-May, and will have a mammogram, ultrasound, and see the surgical oncologist again that same day. The mastectomy worries me more because I feel like I may be a beat down shell by the time I get to it. Also, baby boy turns 2 next month, and his big ole pumpkin head just lands on my port all the time, so the idea of picking him up while healing from surgery makes me cringe.
Anywho, round 2 was a bit better than 1 mouth and tummywise. Just tired, drained, food aversion. Making my summer list now so I will be ready to eat all the food when it tastes good again!
0 -
Hi girls,
Welcome Back DEBMISTO, can't imagine working but you go girl! I was wondering where you were.
Welcome back home, AMBURT, I'm so glad you get to be home again and that you're feeling a bit better. Hope it goes better moving forward.
MOTH, I don't really care about my hair either. I look at it like, if I hadn't had chemo, I never would have cut it because it had taken me a real long time to get it the length it was. This way, no choice and I'll get to see what I look like at 55 with no, very short, real short, short...etc and then decide where I like it. Kinda like an adventure. I did have some grow back between round 2 and 3 and it was full white!!! I was a bit freaked but my hairdresser says perfect, then you can be any colour you want later, or it might just be cool white. By the way, our diagnoses are pretty much exactly the same except I'm stage 2 (for tumour size)
Welcome DOWNDOGGIE, good luck with the yuck. We're here for you.
Hi IDKIDK welcome!
About me, 3rd round tomorrow. Lucky me I only have 4 rounds in total, so feeling more positive as I get through each one. This time, I sent out an email to many people in my circle to ask for help before I need it as I got pretty down last week when I couldn't find help. I have had great responses from friends who are just glad to know how they can help. I let you know if it works.
I do have to say, knowing that I will have radiation after is kinda a drag. Sometimes I feel like changing my mind and having a mastectomy instead so I don't have to poison my body anymore. Anyone else feeling in the same shoes as me?
Good luck to everyone. I'm thinking about you all. And almost forgot cute wigs LOLETTE and what is a fake husband? Maybe I need one, lol
indahood
0 -
Laurie a fake husband is one who told you in May that he wanted to leave you while still living abroad as an expat, then told you he will leave the house in January and then stayed with you because you were diagnosed with breast cancer. He will support you, take your hand and hug you and play the good husband but you know it is fake because as soon as you won't have cancer anymore he will be gone. It is hard on me because I don't want to get a separation or worse a divorcebecause; i still love him. I know that after this nightmare I'll have to face another one.
After 1st round chemo, I saw my MO and tumor has shrinked to about 2 cm. Which is a very good response. My MO was surprised. Maybe it is the fasting. At this rate, after all the doses, I might be tumor free. So I told my MO that I won't need surgery or radiation but you should have seen his face. It was funny. He was horrified. He told me that I should still need the whole thing otherwise I would die. I am wondering one thing. Can the same chemo product be used a second time in case of recurrence? So I am also afraid of the surgery and the radiation, more so than the chemo.
Heading this afternoon for round 2 with a friend and will rely on my teenager boy for 2 days and then boy and daughter for 5 days until fake husband comes back from Belgium.
Cheers to all!
Laurence
0 -
Lollotte I’m so sorry to hear that you will have to deal with those issues after you beat cancer. It must be weighing heavy on your heart. Have hope, as this is not a done deal and maybe he will take time to reconsider his decision. That’s great news that the tumor has shrunk! Your wigs look cute on you, how fun to have two that are so different.
Ladies, if you haven’t taken advantage of the free Look Good Feel Better class, I highly recommend it. I went earlier this week and not only was it fun and informative, but I got to take home a boatload of high end makeup. NOT makeup samples, but the real deal. Here’s a pic of my stash:
My 16 year old daughter was super jealous and I had to tell her I wasn’t sharing any of it, lol. I’m usually really generous with her but sometimes mama needs something all her own.
Indahood that was so smart to put your support system on alert for what you will need next week. Those that truly want to help will be grateful for the clear directions. Those that don’t want to help, well f them!
Ofmiceandmen we are on the same treatment, I’m a little behind you as my round two is Thursday. I hope the SE’s this round treat you well.
For everyone else have a great weekend, take care of yourselves, and let others take care of you.
0 -
I'm finally starting to feel human again! I went for small walk yesterday. I get out of breath soon, especially as I was chatting with dh as I was walking. I think that's the adriamycin and its effect on the heart. I wear my fitbit and my resting HR is also elevated. I once hit the 'fat burning zone' while casually strolling to the bathroom! I was very fit before chemo and normally even brisk walking wouldn't get me into burn zone; I had to be jogging or walking up steep hills. My poor heart; I hope it will recover. Two more doses of the adriamycin for me.
I'm kind of jealous of the look good feel good hauls but I won't be going as I'm an ethical vegan & almost all the products they give out are not from cruelty free companies. I've bought a few new things online for myself instead. I got a lovely new lipstick which comes in a beautiful metal case and makes me feel very retro and posh. And so far, my skin has been suddenly quite good (well as good as it can be for a blonde who spent too many years on boats and beaches; I really always thought I was going to get skin cancer, not breast...)
Lolotte - I am so sorry about the situation with your husband. That must be very painful. Love is such a complicated thing.
Some of the chemo drugs have lifetime maximum cumulative dosages so you can't use the same drugs again. Adriamycin for sure is like that, because of the cardiac toxicity... not sure about the others. I would far rather take radiation if it reduces recurrence risk. My MO point blank said, "it's one thing if you get a localized recurrence - then we can just treat it again. What we're really trying to prevent here is a distant recurrence which makes it stage IV right away and that is not curable". Good luck with round 2! I hope your friends and children look after you well.
indahood - glad you're lining up help for the next round. I hope you get the support to make it go smoothly. Good for you for asking and arranging it all. The possibility of mastectomy was still being waved around for me while we waited for my genetic testing but mine came back all negative so I think they won't recommend it now. I'm still of 2 minds about it. Along with not caring about hair, I don't really care about my breasts either. Otoh, surgery is surgery and there are always risks. I think sometimes we get a bit blase about it, kwim? Surgeries can still go very very wrong.... My tumor was on the left side means radiation close to the heart which worries me a bit; I hope that we have some procedure here for respiratory gating or otherwise shielding the heart.
It's sunny and things are starting to bud and grow in the garden. I wish I could go dig a bit but I think with my low neutrophil counts playing in the dirt is out this spring. The cherry blossoms are fattening up. Magnolias are almost ready too. The birds are loud all morning, squirrels are having huge races. It makes me happy to see them.0 -
Lolotte- I know there is a lifetime limit of the amount of adriamycin they can give you. I'm not sure about others but I've wondered that too.
Ofimice-I know what you mean about the port/kid's head. They place them at the exact place where your kiddos hugs land. Not fair. For a few weeks after I got my port I wore a tiny pillow pinned under my shirt to keep my kids' heads from hitting it. Now that it's been there a while it doesn't hurt as bad when they plop their heads right on it.
My final AC round is Monday and I'm already dreading it. This last one was bad. I'm hoping it doesn't go so roughly this time. I think perhaps it was because I was on my period because the first two weren't as awful.
And now for happy thoughts...I got a puppy! I've been working on my husband for almost 20 years to get a dog and I finally cracked him. We were planning on getting one for Christmas but then, cancer. My doc has cleared me from a medical standpoint, just thinks I'm crazy for taking on a dog during treatment. Whatever. I needed a dog. Look at this face and tell me he isn't going to help me feel better.
0 -
awwwwwe puppppyyyyyy!!! congrats!
Dogs are my 'thing'. I have had dogs for many years. Down to 1 now as my oldies have left us one by one. I am trying to figure out the best time to add another one. I think maybe between chemo & rads....0 -
Lolette, sorry about your fake husband and sending you love to help you through the heartbrake. I guess I don't need one of those.
CBOK you made my day. What a cute puppy. What kind? Name? Male female? In the chemo chair right now enjoying the picture. Here's mine. They are work but they bring so much joy.
0 -
Love the pup and dog pics!
Been feeling really aweful past two days... tired and semi nauseous all the time.
Here's a photo of my constant companion when hubby is at work and kids are at school.
0 -
- hi ladies and ty for your welcome.
- Funny my tumor with 1st A/C didn’t string but flattened. I said the same thing, if it goes away can I keep my breast. Also received that horrifyingl look of no way. Oh well.
- Very cute cute puppy, lucky you. I also got a new pup and am finding it hard to take care of her and my other dog and kids and house and work etc etc.
- Day 2 or. Is it 3 ? of 2nd A/C and I’m so very tired.
- Do we count the day we get it ? Got it Wednesday today is Friday.
- Such a long process and then to worry if it will come back is not good for any of us.
- They also found and did MRI biopsy on my right breast but say it was benign. Idk if I should have a double mastectomy now. They say no just reduce MRI in a year. Idk if I trust that.
- Hang in there ladies. You’re all my heroes.
- My new pup velo
0 -
I’m hi ladies and ty for your welcome.- Funny my tumor with 1st A/C didn't string but flattened. I said the same thing, if it goes away can I keep my breast. Also received that horrifyingl look of no way. Oh well.
- Very cute cute puppy, lucky you. I also got a new pup and am finding it hard to take care of her and my other dog and kids and house and work etc etc.
- Day 2 or. Is it 3 ? of 2nd A/C and I'm so very tired.
- Do we count the day we get it ? Got it Wednesday today is Friday.
- Such a long process and then to worry if it will come back is not good for any of us.
- They also found and did MRI biopsy on my right breast but say it was benign. Idk if I should have a double mastectomy now. They say no just reduce MRI in a year. Idk if I trust that.
- Hang in there ladies. You're all my heroes.
0 -
0 -
0 -
sorry for the deleting. Didn’t know it posted so I clicked and clicked.
Bless us all
0
