Who is starting chemo in September 2016?
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Welcome and Greetings Seq, Geeys, Sam, and Oceansky..like Mbella said welcome to the crazy train..lol
misslil....i heard the ice chips help to prevent mouth sores...glad your chemo day went well..and its no problem pampering yourself to a short hair cut..i bet it looked good...i think i am going to shave my hair off after my second treatment in 2 weeks.
VLH....lol@ Ice, ice baby!
Mbella..hope you get some sleep lady..it is had to sleep with that port when you first get it.
Well yall know like to give a play by play of my experience like i am a sports commentator...
ChemoDay1
I went in nervous, happy to be getting started, emotions all over the place...I go to the lab to get my blood drawed..the nurse goes to take the blood out my port..guess what ladies and gentleman...the blood don't wanna come out...I immediately was like what is wrong..the nurse said calm down...imma use a different size needle and she called for help from the lead nurse..In my mind i am like what the h***....and i say to the nurse did the surgeon not put it in correctly...and she said he did put it right...it's just some women and that i wasn't the first one...where the port after a couple of days a hard growth will grow around it...and they have to inject in it a blood cath...which is like for example when your tube gets blockage we have to use like draino to unblock it...i was like okay...so the second needle didn't work....it was flushing with the saline each time because i tasted it..the blood just wasn't comin out...so the port was put in correctly.....so when the second needle didn't work....i was put in a different room with a different nurse so she could draw the blood from my arm...i had my first meltdown in a while...i couldn't stop crying...the nurse held me tight..and told me to let it out...i told her sorry..she told me to never apologize and she can't imagine what i am going thru...i finished my cry and she took the blood..and hugged me bye.
i came out the lab and hubby say...you was crying wasn't you..i said you know imma crybaby...lol...we both laughed and he hugged me as we went and got on the elevator...i told him what was going on...we get the waiting room...another nurse immediately comes to get me to put put the blood cath in port....she was like its okay....ladies go thru this...she put the injection in and asked me could she pray for me...i said yes..she held my hand and prayed....i started crying again..lol..she finished and said..ohh i didn't mean to make you cry..i said you didn't...im just a cry baby...she laughed...i went back out to the waiting room...i have to stay that my cancer center Rocks!!
My husband said you crying again..i said yep...he laughed...the next nurse came out to get us...we went to back to consult with the nurse practitioner about my labs..and any quesions we had...they checked my blood pressure it was high again...i told them i never had a high blood pressure til i found out i had the big BC..they started laughing and said that if it don't start coming down..they gonna put me on bp meds...i said goodness...we left there and was taken to the appointment desk to set up my next 2 AC appointments..
Finally i make it to the chemo room..Yay!...the nurse ask me do i want a tv or room with a view...i said i want a view....it was a very nice setup...the rooms were all connected together by sliding glass doors..the nurses stations were set up in the middle...they gave me a blanket, pillow, asked if wanted ice or juice or snacks..the chair vibrated....i can see why ppl go to sleep while doing chemo..they make you comfortable...the chemo nurse goes to do a check to make sure the blood out my port is finally working...its still not....nope i don't cry this time....lol...she said she will give it another 30 minutes...b/c you have to give that blood cath an hour to work...i said okay..she left my room...i looked at my mom who just joined my husband and I...i told her lets pray...she said okay...we said a prayer and i put in my heart that the next time she she do the port test to make sure the blood comes out..it was going to work...she came back in 30 minutes and i told her before she started that it was going to work this time..she said that's right! and did the test and the blood shot out fast..filled the tube up....i said thank you Jesus!!!!!!
You know how ppl say day 2 or 3 hits them hard....Day 1 hit me real hard...i am glad i ate a good lunch before the chemo b/c i felt very very tired, i felt sick, and i felt very nauseous, even though i had taken the zofran...i immediately took the the compazine when i felt nauseous...i slept all day..i couldn't move..i had no energy..i woke up once to eat some saltines and went back to sleep...now i am up at 5 this morning with a lot of energy this morning..still not hungry....but i feel 100% better....i have to go get my neulasta shot today at 4..and prepare for my daughter's bday party...btw..Happy Birthday MBELLA!
HAPPY SATURDAY AND TO ALL A GOOD NIGHT OR MORNINGF..:)
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couple of spelling errors...i typed tube..when i meant tub...and the others errors..yall know what i mean..lol
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nayda985, my, that sounds like quite a situation with your port access. Glad you were able to get through it and came out with some good humor to report how it went. I'm sure we all cry on the doctors and nurses from time to time. I managed not to during the two treatment dates but lost it the day before briefly with one of the nurses who was just going the check-in interview before the doctor came by. (Won't even mention the 'tumor board' day when I was a mess pretty much from the first 10 minutes all the way through.)
when I went in yesterday, the nurse did bring up Claritin in relation to the Neulasta injection. She said it wasn't in their treatment program but since so many patients had been bringing it up to their staff they do tell patients about it. I asked if it was just Claritin or also Zyrtec (when I googled the question, some sites mentioned both, and I had extra Zyrtec at home
). She said Claritin specifically was that they are hearing from patients. So I did wind up getting some and took it last night, she suggested taking it the first three days.Early on day 3, no bad side effects yet. Most I can report is a little sleep disruption but that is getting better with the port. A little stomach gurgling last night for which I took some Tums, and a little coughing which might be from allergies vs. any of this experience.
I asked the RNs what to expect coming up this week as they continue to warn that my regimen is a "tough one." They said the "tough" term is due to the number of drugs combined and duration to get through as much as other things. For first week they said to expect fatigue and possibly the g-i upsets of either/both type which i should try to nip off with the Rx Zofran or OTC Imodium plus other things. They didn't encourage any paricular diet changes (moderate coffee ok, even occasional glass of wine or beer except right around treatment days seemed to be ok). They were more focused it seemed on going with whatever works to keep up your strength and morale through the whole experience - I thought that was interesting. Did warn me of course against any 'special diet supplements' which they'd want to check out; not something I'd been looking into anyway since I'm very slow to take pills most of the time.
it is a little nerve-wracking being in the early stages of this not knowing when/if more unpleasant SEs may hit or which ones. Except the hair thing, I'm pretty much sure that's happening and when. Have appts next week to start that transition.
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VLH--Thanks for your input. I kind of was thinking the same thing. So the moral of the story is that things can happen and they DO. I've been struggling for a couple of weeks to wrap my head around "chemo is what you make it" comment. In my experience with this so far, everything has been the worst possible news and I'm scared to death the next steps are no exception. My first doctor said "it's probably nothing" when all this first started. Yeah right. He isn't my doctor any longer.
Nayda--I love your play by play commentary! That is just what I need. I am the type of person who needs to know what's going to happen, when its happening, how it's happening, where and how much its going to cost. I just have to know ahead of time and have a plan in place. Your story about your port makes me nervous! Well, actually the whole thing has me scared to death. But this is exactly the kind of thing I need to hear. How long did the actual infusion take? What did they tell you about driving yourself to and from treatments? Thank you!
To everyone else--Thank you for sharing your experiences. Again, that is just what I need to hear. I am absolutely terrified of the next steps. I HAVE to be able to keep working (dr. made me cut down to part time) so the side effects need to be minimal. I am horrified at the thought of losing my hair. I work with children and I have to maintain a sense of normalcy for them in the way I look, feel and act. I can't be any different in their eyes. I have a wig lined up that exactly matches my hair, but I know I will feel like I have a flashing red light on top of my head with a sign saying "hey look everyone, she has cancer and is bald underneath this fake hair!" I can't even bear the thought of facing my family like that. Another thing that is irritating me to no end is the comments I'm getting from everyone else in regard to this. "oh you'll be fine" (maybe not), "you just need to be positive" (how can I, I have cancer!), it's just hair, it'll grow back" (but its MY hair attached to MY head), "I'm sure the time will just fly by through this process" (it already feels like time is standing still), or "you should be happy, it could be worse" (it is pretty bad already). You get the idea. I have tried to keep this private and only sharing with closest family and friends, but a couple of people have made it their business to be a blabber mouth and tell everyone they see. I went to Walgreens last night and one of the employees comes up to me and said "Oh I hear you have cancer". I asked who told her and she said it was one of my closest friends who I trusted to keep her mouth shut! I am a constant bucket of tears and have many meltdowns per day. One in the middle of Walmart yesterday. I saw a paper the doctor had to fill out for something with my my husbands work. She wrote on there that I can expect to be incapacitated for the full 5 months of treatment. WHAT!? That can't happen. Ok, my rant is over. Sorry for throwing this on all of you. I am not one to talk to someone one on one or in a group face to face, so being able to put this out there in writing is a great help to me. Thanks for listening. you are all truly wonderful! Please keep sharing your experiences!
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misslil...glad your doing well lady...<finger's crossed>...no bad S/E's for all of us...i get my Neulasta shot today...i started the claritin three days ago...<finger's crossed> no bone aches...the nurse practitioner i saw yesterday...said that doesn't occur in everyone just a low percentage..which i have forgotten what that was..lol...imma pray no bone aches for me...don't have time to put up with that..got work and 4 year and a 9 year..my 18 year does his own thing..which i am delighted about..lol
seq...glad you like the commentary lady..lol...i like to tell it all..i know how you feel about being afraid and anxious about everything...i was very afraid the first two weeks of my diagnoses..i prayed...and went to church and prayed with family..and all of sudden God lifted off that terror off my shoulders....i am not afraid anymore...i have gotten in fight mode to rid myself of this monster that wants to take my life..(not happening!!)..i still have high anxiety when i go to the cancer center b/c i gotta get pricked and prodded with needles and going thru that port surgery...thats what makes me anxious...be glad when i can get over all that..lol...the unknown is scary..i hope one day i can get used to myself..im the kind of person that wants to control everything..but this is one thing i can't control..i am with you about not telling the whole world i have the Big BC....only my husband and my mom and brothers and my eldest son and my coworkers know and its just three of them in the pharmacy i work...that's it...don't ever feel bad about how you feel about things...its your life...and its what make you..you...but i believe it will get better lady..it has to.
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seq...forgot the infusion question sorry.. Lol..when I finally got to the treatment...the dexamethasone was 30 min.... The emend was 30 minutes.... The chemo nurse pushed the A(red devil).. Lol.... Which was 5 minutes..the C.. Was an hour..... Some women and men came by themselves...there is a valet in front of my cancer center... My MO did tell me not to drive to first treatment by myself though....my husband has talked to his job and plans to come to every treatment with me... I know i kept him for a reason... Haha... Just playing.. I love him.
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Howdy, I'm a former member of the September 2013 chemo group, and I just wanted to say hi and good luck to everyone. Today is actually my 3-year chemoversary (I started in August, but connected with the September ladies better), and I'm happy to be one of the lucky ones who get to look at the chemo monster in my rear-view mirror.
You are all so strong, so able to do this. And you have an absolute army of survivors blowing wind at your back.
Much love and strength to you all
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Hello all,
THe port area feels a bit better today (thanks to the ice, ice, baby lol) I didn't sleep well last night.so I plan on a nap today. My best friend is driving from Colorado Springs on Thursday to be there with my husband and I for my first infusion, I am excited about that, although I am super nervous. I hope you all are having a fantastic Saturday. Gentle hugs and prayers for those that aren't feeling well.
xoxoMichelle
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It sounds like several of us may be planning to work through this process. Best luck to all. I took a long weekend for the first treatment day, yesterday and then will be out again Monday unless I decide to go in for a few hours. After that I am hoping to work through until the next treatment starts, taking it a step at a time. I was surprised when I went in for the 'tumor board' that the navigator told me I'd have to be filing for all sorts of leave through FMLA. Not looking to do that if i can keep it together to do otherwise.
Winding down day 3 from treatment. Took a walk, did some cleaning and organizing around house, plus a big ol' nap - feeling a few slight side effects but nothing I'd write home about if I felt them under any other circumstances. Hoping for the best tomorrow when the anti-nausea IV drugs from treatment date supposedly will have faded out.
Best wishes to all
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Yay for you, JellyK!
Nayda, I'm so sorry that happened. Nothing like adding to an already stressful situation! Thank you for sharing your experience in case someone else experiences something similar.
With the surgeon's blessing, I'm taking no antibiotics this weekend to see how the infection fares. I'll afraid to say this out loud, but think the sentinal node seroma is finally shrinking. The one on my breast is still huge, but I'm grateful for any favorable signs.
Michelle, how great that your friend is coming for added moral support!
Misslil, I hope you can keep working. What are tumor boards?
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Hi! I heard that some others from my Sept 2015 group have dropped by here, so I want to join them in cheering you on! I wish none of you had to deal with this crappy disease. Breast cancer has no mercy --- strikes at random, and is NOT YOUR FAULT AT ALL so don't even think of blaming yourself. Stress does NOT cause it, depression does not cause it, and you can do all you can think of to live a healthy life, but if breast cancer is going to hit, it will. So no self-blaming! (Saying this because I started out blaming myself for putting up with stress I could have walked away from...).
This site is packed with tons of practical information about how to deal with treatment side effects, that no one at my hospital ever mentioned. But more importantly, the emotional support from the other women here, women who've walked or are walking the same path as you, will be priceless. Absolutely the best. I'm one of those with a completely unsupportive spouse (some people just don't "get" that cancer is serious and its treatment can be rough), but yes I was able to tough it through the harder days thanks very much to encouragement from the wonderful Sept 2015 women. And you all will help each other through your own rough spots --- which I hope will be very mild for you, and very rare.
Others have already posted this here, but it is so important I'm repeating: Chemo, surgery, and radiation side effects ARE NOT caused by you worrying about them, and CANNOT be completely avoided by just deciding that you won't get them. Sorry. I so wish it were that easy
So if your body does suffer from the life-saving treatments you are going through, please don't blame yourself (or your body). Focus instead on getting the rest and any medical help you need to heal. I used cold caps and still lost almost all my hair (except for very very sparse gray fluff) --- but it is all growing back
The anti-nausea drugs available today are AMAZING! Puking my guts up was one of my main fears, but over the entire course of chemo, I only did that twice, and one of those was most likely from something I ate
My chemo nurses said take them when you even think that you maybe might be starting to feel nauseous, because prevention is easier, and they were very right Anyone getting TAXOTERE (docetaxel): I wish I had been given cold gloves and cold socks during all my Taxotere infusions: taxotere can cause peripheral nerve damage, which hit all my fingers after the first dose as pain, redness, swelling, then numbness. Cold treatments during the infusion can lessen or even prevent this. Luckily at one year out all that's left is mild numbness at the fingertips. But I so wish the clinic had "remembered" to give me the cold pretectors right from the start.
Also: if any of you start to get swelling and/or a "heavy" feeling or pain in your operated arm --- especially the inner part of you upper arm --- please have your doc and/or nurse check you for possible lymphedema (LE) --- even if you had no lymph nodes or just a few nodes or even just the one sentinal node removed. The earlier LE is identified and treated, the easier it is to control. LE is a pain in the b*tt, but yes one can learn to live with it. This site has a fantastic lymphedema forum filled with excellent advice, so if you have any suspicions you might be developing LE, do check it out!
Yes, you've probably got some rough times ahead. Cancer is serious and needs to be hit hard. I wish all of you strength and courage through the next year --- you can do this!!!
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VLH, tumor board is the informal term the doctors use at my hospital for a multidisciplinary program they run for new or tricky cancer diagnoses. I went through it when I had DCIS some years back, and then again this year as both times I had complicated factors to work through in decision-making. A rotation of medical specialists do quick exams/visits with you after reviewing your history and then get together with each other and additional consulting doctors to debate the recommendations. This time it was a senior surgeon, medical oncologist, radiation oncologist, plastic surgeon, plus a nurse and social worker. These aren't necessarily your own medical team so you get new opinions.
It was useful, but I was shocked in that it was the medical oncolologist in the multidisciplinary panel who broke the news to me on all the chemo they wanted me to take. I'd met with my regular oncologist before that, and based on the biopsy results he'd mentioned only the possibility of Herceptin which was a much milder prospect. Maybe that was just timing, as by the multidisciplinary day my "FISH" test had come back for HER2+, and also an MRI showed a large enough problem area to make me eligible for the early stage HER2+ neoadjuvant therapy.
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Hello everyone!! New to the forum. Ill be starting AC on Sept 7. Trying to get as educated and as prepared as I can before it begins. Got my port last week - in the arm. Already used it - I think it is going to be incredibly helpful.
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When my wife (Emily) and I met with her oncologist last Friday, we heard pretty-much what we expected with some exceptions; she'll have 6 rounds of chemo (we were hoping for 4), they recommended keeping her port in 2-3 years after her last targeted therapy infusion, the Herceptin treatments would last until next year at this time, and that she'll be getting a CT scan. We debated the pros/cons of the scan, because it isn't routinely performed in Emily's situation, but we figured if there is something else out there, we'd rather know early.
We went to the wig shop again yesterday and picked up some scarves, hats, and one halo wig. Once we get approval from our insurance, we'll pick up another halo and a hat (with built-in hair) we ordered, and a couple of really nice wigs. It is amazing how realistic they look. They did a great job of matching up hair color, style, and fit. Oh, I forgot to mention, Emily cut her hair very short on Friday (it was shoulder length) in anticipation of losing it. She is taking it all in stride, hasn't cried once yet. I suspect that'll happen soon enough though. I love her so much!
nayda - love the commentary, sorry for your difficulties!
misslil - looks like your second regimen is similar to my wife's.
MF - here's to hoping your port starts feeling better, Emily's goes in next week.
Prayers to everyone for smooth treatments and minimal SE's!
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Thank you everyone, I am indeed blessed that I have the support that I do. I will be most likely driving to and from chemo after the first infusion, so hoping all goes well.
The tumor board chimed in after my surgery too, I didn't actually meet any of them, but they reviewed my case and decided along with my MO that chemo was best for me, I am not looking forward to Friday, but am anxious to get started to get rid of this beast in me.
I hope all are well and experiencing few SE this weekend.
xoxoMichelle
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Tessu, thanks for stopping by with encouragement and useful tips.
Missile, thank you for explaining the tumor board. I suspect the local university-based hospital I liked has something similar. Since I declined the recommended neoadjuvant treatment, the surgeon wouldn't operate on me so I had to find someone in private practice.
Good luck, SuePar. I thought ports were always in the chest. Where on the arm do they put it? Is it on the non-operative side?
Sam13, six rounds is the norm for the TCHP protocol your wife is receiving as is the Herceptin for a full year. I'm glad you were pleased with the head coverings.
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Sam13, yes it sounds as if your wife and I may be doing a similar protocol with the TCHP drug combination. Mine is before surgery, which if all goes to plan I'd be looking at after the holidays +/- radiation next year. With Herceptin continuing on into 2017 until it's been a full 12 mos from when I started last week
No severe side effects yet into the first weekend, though I will admit to feeling on the thready side today for sure. On the bright side, the port area is healing up a lot better and my assortment of rainbow colors are fading out a lot more.
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Thanks for the encouragement and tips ladies from the previous Sept. groups!
Hi Sue..I too did not know you can get a port in the arm...interesting.
Sam..i didn't know insurance pays for wigs..i may look into that on Monday. Glad you are there for your wife..sounds like she is in loving hands...Good Luck to you both on the port surgery!
Mbella...Good luck on Friday lady!
VLH...hope that pesty infection has left the building lady.
Day 3 has been okay...i am having a few s/e's today...forgot to take claritin this morning with my other meds..and the bones got real achy from my neck down...felt very fatigued today..no energy...constipated this morning...my hubby is the best..he went and bought me a pill reminder case..(so i don't i don't forget claritin again)..he bought me some stool softer..and cooked dinner...i finally had to take a Norco tablet left over from my port surgery to alleviate the bone pain...then when i finally got to take a bm..it was burning..glad i have flushable wipes on deck..lol..i hope i have a better day tmrw.
Hope everyone has a great Sunday!
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Nayda, you got Norco for your port? They gave me no meds at all. I took advil. (which doesn;t do anything) Sorry you forgot to take your claritin, glad you have a sweet hubby like mine to help you through all this.
xoxoMichelle
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MBella....Yes mam we are blessed to have these great hubbys...Yes my surgeon wrote me a script for Norco 5mg before i was discharged after my surgery..the pain hit me when i woke up in recovery after my surgery...have you tried tylenol for the pain?...wish the doc would have wrote you a script for pain lady...b/c i know advil wouldn't help me either.
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WOW Nayda, I am glad for you. Luckily after the first night it has not really hurt all that much. The problem is just took my first allowed shower and the dermabond glue came off. Just called after hour care to see what I should do if anything. It seems to be holding together, and my hubby put a bandaid on it to keep it clean. We shall see what the on call doc says. I see the PS tomorrow at 8 am for one more check to make sure the infection is gone before friday. I see the MO on Tuesday for a pre chemo appt. then on we go to chemo land. lol
xoxoMichelle
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lol@chemo land...its good you see the doc tmrw...hope that infection is gone lady...gotta ride saved for you on the chemo train.
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I will be starting Chemo on September 7th. Looking at all of your posts you all seem so knowledgeable and I feel completely lost. Hoping to learn a lot from this forum.
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Welcome ACS! You've found the best place for support -- we're all here for you and welcome you with open arms!
Come back often, ask lots of questions-- we're all here for you!
--The Mods
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ACS74--Don't feel lost because I am right there with you. I've learned a lot from these posts but still feel pretty ignorant about most of this and am still very new, scared, weak, and totally in the dark. We will be there for each other, and learn this together. OK?
You have come to a great source of information and support. The ladies on here are fantastic. Please be in touch and feel free to PM me if you would like. Take care.
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Welcome ACS, we all learned a lot here, asking lots of questions and reading past posts. So don't be shy!
xoxoMichelle
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Thank you! Looking at all of the signature lines I'm realizing I don't even know half of that. No one has really gone over my pathology with me. I guess that's why I feel so lost.
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Nayda &VLH re: my port placement in my arm - since I will need radiation on both sides (aggressive tumor type on my left and spread to nodes on my right), they put the port in the upper left arm. They did a great job. When the bruising is healed, I don't think it will be noticeable at all unless you touch it.
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happy Sunday all.
a couple of questions for everyone
1. Is there a list somewhere of the types of chemo and their abbreviations? I keep getting confused by the ones that are not my own and could use a cheat sheet.
2. I'll be starting AC firstand wanted good insight about if it expected to impact my nails and if neuropathy could be an issue. If anyone knows or could point me in the right direction, that would be great. If I'm thinking about icing, just want to make sure it is necessary!
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hello again. I'll have the first of 12 weekly treatments in two days.
The port surgery was not an issue. I did find that a curved travel pillow worked wonders to help keep my neck in place so I could sleep at night. Used it for two days. I still feel a bit of pulling, but it is not too bothersome.
Went to chemo class. Honestly, I don't think the nurse told me much more that what I've read here.
I picked up several suggested OTC meds and have a small bag for treatment day. Got a wig, but still need it slightly styled. Picked up a few hats and other head coverings. Honestly, I don't care much about possible/probable hair loss. Some of the other potential side effects have me a bit more worried. I am trying to read about the side effects particularly for the weekly treatments. Trying to figure out which day after the weekly treatment might be the most bothersome or uncomfortable.
I hope you all have a pleasant and easy week
M
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