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Who is starting chemo in September 2016?

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  • Jiffrig
    Jiffrig Member Posts: 158

    sue par, I am questioning the icing for A/C also, I thought it was just for taxanes. Last night I started getting toe/foot cramping and hands and feet falling asleep a lot. Not necessarily nerve related but... I am 10 days out from second A/C so you would think s/e's would be sooner. I'm confused. Anyone weigh in on this

  • Run13one
    Run13one Member Posts: 1

    I started chemo on the 23rd. I'm dong TC 4 rounds. 

  • Heidi000
    Heidi000 Member Posts: 17

    Hi. I'm new here. Was diagnosed 7/21. Had surgery 8/2 of double "M" and thought I would be 2 and done. Well, my Oncotype score came in on 8/16 with that weird number of 21. Had 3 opinions. All said the same, that it is up to me, but why not do what I can to lower chances of re-occurance.

    I picked my doctor and we negotiated on a plan of Lupron or similar shots to force menopause and CMF chemotherapy. Will take 2x as long, but TC seemed overkill for me. And I am terrified. Due to start tomorrow (which is why I joined September and not August forum).

    Is anyone else Oncotype 21 and in the same situation?

    Good luck and best wishes to us all!

    Best,

    Heidi000

  • seq24
    seq24 Member Posts: 451

    Well, I got the news this morning. 20 weeks of chemo, AC/Taxol, starting Sept 9, no exceptions. I knew that was coming. I feel pretty numb at the moment. I foresee many more hours of crying in my future. I just don't get how anyone can humanly go through this. Feels like the torture chamber to me. MO made it sound so easy when she was explaining. Not sure if I'm buying that. I have yet to talk to anybody who said it was a piece of cake. Well except for one person I talked to who said whenever she felt tired she would go for a 2 hr uphill bike ride or a 5 mile run. That definitely won't be me. I was reading back on some posts from the June, July and Aug chemo boards. There is some pretty awful stuff on there. Could it be that only those with bad side effects are posting? If anyone has any tips to help me get through this I would appreciate it. Scared out of my mind at the thought of them poisoning my body like this and what it will do to me. This is my worst nightmare!

  • MFalabella
    MFalabella Member Posts: 105

    Seq24. My MO told me to think of chemo as medicine, not toxins, hard, I know but for many of us the only way to get rid of the beast. I am sorry you are so stressed! Hugs and blessings to you.

    Heidi, my oncoscore was 36, I was lucky not to be in the gray area. Good Luck with your chemo.

    Jiffring, We are all unique when it comes to how we react to treatment. I am sorry you are having the dreadful SE that you are. Gentle hugs to you.


    I saw the PS today again and got the green light for chemo on Friday, I see MO tomorrow for prechemo appointment and bloodwork, I hope she also has the results of my echo test.

    I hope every one is as well as can be expected. For those of you not feeling well, I pray you get some much needed relief.


    xoxoMichelle

  • Sam13
    Sam13 Member Posts: 49

    Just got off the phone with the hospital. Looks like Emily will have the CT scan tomorrow and a port placed on Friday.

  • 70charger
    70charger Member Posts: 591

    Hi ladies! I'm from the Sept 2013 group. Just a couple of things. The 1st chemo is the worst, all due to fear of the unknown on infusion day. If u are shakey, queasy etc it is more than likely your nerves. You will be exhausted due to tension. After your 1 st infusion, make sure to fill out your side effects sheet everyday. This is REALLY important as they will adjust your next infusion so that your side effects are less. Don't forget to take it in when you go for your bloodwork before your infusion. 2nd infusion was so much better once they adjusted mine. I hate that we are all here but it is doable. Just take it one day at a time. What got me through it was thinking of all the little kids that have to do it. If they can do it so can I. Keep coming here & unloading. The support is great & really helps u get through the worry. Good Luck to all. Any questions feel free to ask. Fran

  • bagsharon
    bagsharon Member Posts: 142

    Hi All, I'm starting chemo next week: 4 cycles of Cytoxan and Taxotere.

  • MFalabella
    MFalabella Member Posts: 105

    Welcome Bagsharon, good luck with your treatments, please feel free to ask any questions or vent here. We are a big family here. blessings and hugs


    xoxoMichelle

  • Ware
    Ware Member Posts: 63

    I get the port in tomorrow. Not looking forward to it. I am still tender from mastectomy. Treatment 1 on Thursday. The unknown is a scary place. People keep asking if I will continue to work through this. All I can tell them is that I want to but I'm going to play it by ear and see how I feel on any given day.

  • MFalabella
    MFalabella Member Posts: 105

    Ware, I hope your procedure goes well ,and that they give you some pain meds. I was a little sore the first night, but all in all not too bad. I Start on Friday, we can compare notes, it looks like we are having the same cocktail. Love and light


    xoxoMichelle

  • MFalabella
    MFalabella Member Posts: 105

    We are all afraid of the unknown, I am grateful that I have the support system that I do. I am terrified for Friday, but know that with the Lords help I will get thru it.

  • SuePar
    SuePar Member Posts: 5

    Ware - I too was concerned about the port placement while still recovering from surgery. It was week three post op. It was a little stressful but not too bad. I'm a week later and I'm the port is healing well and I'm back to continuing to recover from the bilateral. I wish you well

  • Ware
    Ware Member Posts: 63

    MFalabella- yes we can compare notes and such. I will go every two weeks. What will your schedule be?

    SuePar- I hope it is easy sailing....thank you!



  • Shopgal2
    Shopgal2 Member Posts: 594

    sept 16 gals just wanted to respond that not everyone has horrible SE's. Yes there are SE's but I found that when I read previous months chemo boards that people who posted had the most SE's. Or maybe they just needed to post about their SE's to feel better. One of my chemo nurses said to go into chemo thinking I'd have little or minimal SE's and that mindset helped. Yes there is a lot of apprehension before the first chemo but after that you will know how your body will respond. I think the night of my first chemo I was so scared that I slept with the tv on all nite. I remember waking up at 2 am to retake the zofran and was thankful I did. The day after chemo you will have that steroid buzz and the day after that you will have your steroid crash. Just take it one at a time. Call your chemo nurse if you are not sure about any SE's that get worse.

  • LisbethS
    LisbethS Member Posts: 88

    Hi,

    I'm starting chemo this Thursday, 9/1. Cytoxan and Taxotere for four cycles. I was supposed to start last week but had a bit of a melt-down so postponed to this week. My MO doesn't do the Neulasta pods so I have to go back the next day to get my Neulasta injection and they're also going to give me IV fluids which I am happy about because I want to flush that chemo out of me ASAP.

    My husband declared he has the flu tonight, ugh. He's sleeping in another room. I don't want to catch it. My kids have already brought home colds from school. I hope he will be able to take me to chemo. I need to talk him into taking the day off tomorrow to rest. Our helpers need to take care of themselves and rest too.

    Warning for anyone going on Zofran (anti-nausea), it caused me EXTREME constipation. Had to be on it through both my pregnancies and it was a miracle drug as I am allergic to compazine but it caused serious constipation--doctor almost killed me when he found out I hadn't gone in a week. And narcotic pain meds can too. Stay ahead of it.

    Hi Bagsharon, looks like we are both CTs, didn't see anyone else on CT.

    Michelle - my port placement went rather well, I was a basket case though after reading stories online. Those poor doctors and nurses had their work cut out for them, talking me down from the ledge. They didn't give me anything for the pain at home either. I took some leftover from my MX the first night but that was all I needed. Now, I rarely even notice it, once in a while I'm like, what the heck is this, oh yea. I got lucky.

  • bagsharon
    bagsharon Member Posts: 142

    Hi LisbethS,

    Now that you mention the drug combination, there doesn't seem to be a lot of us and it wasn't one of the regular regimes in the drop-down menu for this site. It never occurred to me to ask why these drugs were chosen. Did you happen to ask your MO?



  • kdtheatre
    kdtheatre Member Posts: 145

    seq24 - I hear ya. I am in the exact same place, except I also just found out my receptor score changed from what it was pre-surgery, and now I am Her2+! I was about to be sent for oncotype testing, but then they discovered that one of my masses was Her2+ (while the other was still Her2-). So like you - I am freaking out about the chemo for 5 months, along with getting Herceptin via the port for a year! The idea of a port totally wigs me out, and because I have a very rare microscopic lymphotic colitis, I am deathly scared the chemo will destroy what little good lining I have left in my stomach and intestines (or worse, cause cancer there!). I think I have finally resolved myself with the other SE, but terrified for what it will do to my stomach.

    70charger - Thank you for the tip. I really like that outlook of thinking about little kids who have to go through this, and if they can do it...so can I.

    LisbethS - what is the neulasta pods you mentioned? I haven't heard of that?

    I don't have specifics yet, but met with MO yesterday and it sounds like I will be starting in a couple of weeks, so joining this board now. Has anyone heard of getting Ativan at the same time you are getting the chemo? One of my BC survivor friends would do that everytime she got chemo to help with her anxiety, etc. She also shared that the SE of the chemo wasn't a problem, but the SE of the neullasta shot (the day after - which I have to get? Do others) caused her the most grief the following day. So she would go in for chemo on a Tuesday, get the neullasta shot on Wed (to build up your white blood cell count?), and on thursday she had incredible bone pain (from the shot)...she couldn't even touch her cheek bone without pain. By Friday mid-day she was feeling fairly ok again.

    My treatment sounds similar to many others - except for my silly Her2+ crap:

    • Chemo treatment, Adriomicine & Cytoxin (AC) - once every 2 weeks for 4 sessions
    • Chemo treatment, Taxol - once a week for 12 weeks
    • Perjeta & Herceptin start with the Taxol - but once every 3 weeks. Perjeta is only 4 sessions, Herceptin is for a year.
    • After taxol, start radiation and hormone treatment.
  • bagsharon
    bagsharon Member Posts: 142

    Speaking of the the Neulasta pods, why can't we just inject ourselves the next day instead of having to go back into the office? Insurance rarely covers the pods and going to the doctor's for a shot while working full time is really inconvenient. I successfully argued with my husband's hematologist about giving him heparin shots myself instead of making him go to the hospital every day.

  • seq24
    seq24 Member Posts: 451

    kdtheatre- I'm so sorry you are having to deal with this too. This is the most awful thing I have ever experienced! I took the news of chemo yesterday way better than I am dealing with it today though. Didn't sleep last night. Terrified of the SE and mostly of losing my hair! I was all set to go look at wigs today but am quickly chickening out. I cry at the thought that in less than a month's time my hair will be gone. I can't face anyone looking like that !!!! How are you coping?

  • kdtheatre
    kdtheatre Member Posts: 145

    seq24 - believe me. I am not coping well! lol. I took a xanax last night - which helped me to sleep...but trying not to get too hooked to those, for fear of being addictive. Never had xanax before - but asked my OBGYN to prescribe me some shortley after I was diagnosed with cancer, but was waiting to find out 'what type' of cancer. I have decided that cancer is definitely NOT for the impatient or control freaks, both of which I am. So I have many anxiety attacks going on constantly! In addition to the xanax, talking with my childhood friend who is a BC survivor (and oddly did the same meds as I will be doing, minus the Her2 crap) was also helpful. She convinced me that I need to get a 'real hair' wig - as that is what she did and folks constantly complimented her on her hair wondering what she did (as they didn't know she had cancer). She said it is imperative to get a good wig, so you look great during treatment - as that will help so much. My BFF is coming to visit so we can do a special hair shopping day, and I hope I will be able to handle it. Not sure when though -as I am still waiting to hear about my echogram and port placement. Ask a special friend or sister to go wig shopping with you - and try and make it fun? I don't know if that is possible - but that is what I am hoping for. I wasn't even going to do a wig, as I see so many in my Lumpectomy Lounge group looking so good in hats...but now that I will be doing chemo for 5 months - I decided that a wig has to happen. I am sure my hair will grow back all gray - so I am more worried about how it will grow back than being bald. lol. Plus, when I asked my hairdresser how long my hair needed to be before she could add extensions, she said about 1 inch...but it will cost around $800 to do! Yikes! Ok - wig it is! (even though real hair wigs are super expensive too). Speaking of which...

    Does anyone here know of grants or other types of financial aid that may be available to help with costs of wigs or copays? We aren't below the poverty line, but are definitely hurting greatly with the copays already...and I am sure it will only get worse once chemo starts.

  • nayda985
    nayda985 Member Posts: 270

    Whew lot of new faces since I last posted...Hello ACS, Run13, Heidi, Bagsharon, Lisbeth, and KD...welcome to the crazy train..

    All Aboard!!!.

    Went back to work after a long weekend off after having my first chemo treatment..must say I was very tired...I called the cancer center to ask if I could drink an energy drink..that's how tired I was...but I got through the day...thanks to my best friend Kickstart...lol

    Bagsharon....I agree about the neulasta pods...my insurance approved it for me..because I do not want to go to the hospital after every treatment to get the shot..i got my first one at the hospital..just so they could watch me...glad next treatment I wont have to do that.

    Everyone getting their first treatments this week Good Luck Ladies!!!

    Everyone else good luck with no S/E's!!!

  • seq24
    seq24 Member Posts: 451

    I just got back from the American Cancer society office here. They have a program that offers free wigs to cancer patients and you don't have to qualify. You just go in. They have human and synthetic hair wigs. I ended up bringing home a human hair one that doesn't really match my hair but was told to call around to the other ACS offices to see if they have the color and length I needed and they could send it here and I'll return the one I have. This is the 3rd time I have gone wig shopping and the first time that I didn't have a meltdown. I have taken both of my girls with me and it seems harder to have them see me trying on wigs knowing that my hair will soon be gone. This is the biggest of my fears. How am I going to look. I don't want to look like some kind of freak. I have to be out in the public a lot and I just can't have anyone see me like this! I almost would rather have worse side effects from the chemo than have to lose my hair! Also, just FYI, the first place I went to had human hair wigs and depending on the length they were $3000-$5000! I can't afford that. I did see a really nice synthetic one there that exactly matched my hair, but needed to be cut a little different. I will probably end up getting that one then hoping the freebie wig to will work too if they can get the right one in.

    I don't remember, when did you say you started chemo? You can PM me if you want. I am right there with you and we are on this awful journey together!

  • seq24
    seq24 Member Posts: 451

    nayda, so glad you are up and about! That is great news. I am starting treatment next Friday. Pretty scared, no absolutely positively horrified about having to do this. I loved your commentary about what happened during your treatment. Could you also post, or PM me if you want, exactly how you felt for the days after treatment. I may have missed a post if you already put it on here. I just need to know what to expect next week. I'm going to be having AC/Taxol too. How are you dealing with the prospect of losing your hair? That's even worse than side effects for me! Thank you!

  • nayda985
    nayda985 Member Posts: 270

    Hey miss seq!

    I was very nervous during my first treatment also....I posted day 1 and 2 in earlier posts...I am okay with losing my hair..b/c I have alopecia...my hair came out in spots year before last..all of it grew back last year and this year...its just a bummer..to have my hair back and now its finna leave me again...but I already have like 5 wigs and hats and scarves from before...going to get me some more next weekend...my hubby says I look good bald..i told him whatever..lol...us women love our hair..so I understand where you coming from..when I first lost my hair to alopecia I cried everyday for a week..i am having a/c plus taxol also...I get nervous just going in the building b/c they gonna prick and prod me....lol...my MO wrote me a script for Ativan..so when I go back..i will be taking one before I enter the building..lol

  • lmencken
    lmencken Member Posts: 77

    Heidi000

    I'm an oncotype of 20..just made my decision today to do chemo. My Surgeon said while the stats don't support chemo for me..she said she is biased because she saw a woman my age, intermediate onco score and LVI (which I have) have a reoccurrance . So I'm doing it! Tough decision but I am all in now.



  • kechla
    kechla Member Posts: 181

    Welcome Imencken. I am in about the same boat as you with a 22 score, but I've already had a recurrence from DCIS 8 years ago. The choice was a hard one, but I feel it was the right one (for me). What therapy are you doing? What day do you start? Best of luck!!!

  • LisbethS
    LisbethS Member Posts: 88

    Hi Bagsharon - I did ask my MO why the CT instead of CA + T. Since we aren't HER2+ the more usual chemo combo seems to be either CT (Cytoxan & Taxotere) or CA +T (Cytoxan & Adriamycin followed by a few weeks of Taxol). I think the list on BreastCancer.org is outdated and needs to be updated. I wondered the same thing when I couldn't find it.

    My MO said that the A (Adriamycin AKA Red Devil) in CA +T can cause heart problems and I already have a heart issue (POTS) so it was not a good choice for me. CA +T is also a longer treatment regiment, something like 6 months vs. 3 months with CT. I believe she said the Taxol can't be given at the same time as Cytoxan but Taxotere can. I was told that CA+T was the gold standard in breast cancer chemo for years but in certain situations they are moving away from the Adriamycin due to the serious side effects and it's being replaced with CT. I think the heart condition is probably rare but since I already have an issue with my heart...

    There is a lot of talk that the Taxotere can cause permanent hair loss, you've probably seen the lawsuit ads. Two PAs and my MO told me that it is bunk, in all their years they've never seen Taxotere cause permanent hair loss. I believe the truth is somewhere between the lawyers and the doctors and believe it has happened to some women but is rare and I certainly wouldn't put it past the drug companies to cover it up, if it is true.

    I had to think long and hard about whether I wanted to push for the CA +T instead of the CT, I was really worried about permanent hair loss, but my husband said I can love you with permanent hair loss but I can't if you die from heart failure. That put it in perspective for me so I kept with what the MO had recommended for me. But I don't want to worry people that are on CA+T, I already have a heart issue and it must be a rare side effect or they wouldn't still be using it.


  • kdtheatre
    kdtheatre Member Posts: 145

    seq24 - if you were asking me about the chemo, I am not sure when I start. I just med w/MO yesterday and all he said within the next couple of weeks, but that I had to clear my blood labs, echo-cardiogram, and get my port in. I got my blood test yesterday and waiting to hear from doc when they have scheduled me for the echocardiogram and the port. I would assume as soon as the port in - I would start right after. ick. I will def check out the American Cancer Society - I didn't realize they had human hair wigs there! That is awesome! Especially as my insurance will only cover $375 towards a wig. I see you had your lumpectomy on the same day as me! We ARE in this journey together! lol. Except mine is on the right, I had 2 masses, and am Her2+...but everything else the same!

    I agree w/seq24, the more we can hear from the board alumni how the first week of treatment goes for you, the better we can prepare/feel about it. I am sure you have posted before - but I definitely welcome reading anyone's stories of day 1, 2, 2, etc.

    Nayda - you got a prescription for Ativan? My friend got it in her IV during chemo...? Which do you think is best?

    Kechla - am I reading your signature correct...? You had double mastectomy with reconstruction and still had a recurrence? I didn't even know that was possible. How did you know it came back with the implants there?

  • LisbethS
    LisbethS Member Posts: 88

    KDTheatre- the Neulasta pod is a device they put on you (arm usually?) and you wear home that automatically administers the Neulasta the day after chemo so you don't have to go back the next day to get your Neulasta injection. I wanted one, but my MO doesn't use them yet, got some vague reason from her PA. But when I go back the next day for my injection, they're giving me IV fluids which I am happy about because I want to flush the chemo out ASAP and when I'm nauseous, I tend to not be able to drink anything. People that have them can tell you more.

    A mastectomy doesn't keep you from getting breast cancer recurrence, it just reduces the risk. That's a common misperception.