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Who is starting chemo in September 2016?

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Comments

  • lmencken
    lmencken Member Posts: 77

    Nayda..just fyi..my nurse coordinator had heartburn as a SE..I don't think it's as common but she took something before her treatments and as needed...take care

  • seq24
    seq24 Member Posts: 451

    Imencken-I have the same fear as you about head shaving. I don't think I can do it, yet I don't want to have my hair falling out by the handful either. This is the hardest part of all of this isn't it?! I don't know what to do either. I also don't want to cut it short either, which at this point would be a waste of money. I have to start chemo a week from today. I had a meltdown the other night when I realized that before the end of the month I would have no hair. My college age daughter came home the other day saying that she will be recognized at an awards ceremony at the end of September and that parents need to be there. My first thought, instead of it being, wow, I'm so proud of you, was oh my god, I'll have to go out in public looking like that! At this point I'm feeling like I need to hide in the basement with a bag on my head for the next 6 months. Scary thought!

  • Sam13
    Sam13 Member Posts: 49

    Emily had her port installed this morning. The procedure went pretty smoothly minus her having some slight nausea afterward. While we were there they told us her CT scan came back clean, YAY!! Chemo starts Wednesday. Have a great weekend all!

  • kdtheatre
    kdtheatre Member Posts: 145

    SGDsmama - Thanks for your post. Keep sharing what you are experiencing and/or what you are dong for the SEs. Sounds like you are doing pretty good now - so best of luck! I start 9/14 and getting scared for sure for dealing with stomach issues. Other than stopping the Zofran have you taken/done anything else? (Nayda too...?)

    MFalabella - you got this! And we are right here with you! How are you feeling today?

    lmencken - right there with you re: hair. I have fairly long hair too - and still not sure what I will do. I debated getting a short pixie cut and just seeing what happens. One of my friends said she did this - and not all of her hair fell out. But I just don't know! I am wig shopping w/my BFF the day before I start chemo - hoping I find something. If I leave it long - I worry it could freak me out to have long blobs of hair coming out...

  • CC2016
    CC2016 Member Posts: 94

    Here's a wig question for those that are using and/or planning to. What are your reasons to go this route? How comfortable are they? How do they stay put and do they really? Who are you wearing it for, yourself or others? I expect many different answers with many different reasons.

    I really hadn't planned on it but I've had some proding from family to at least check it out. I've never even dyed my hair and rarely style it much so I just feel weird about fake hair. I am worried about how my 7yo daughter is going to take my baldness but don't think I would be able to constantly wear it for her - if she has a bad dream at 3am and comes to get me sudden baldness isn't going to help! I just moved to a new city and am not working yet so don't know many folks that would even care.

    I am planning to cut it short next week. I was planning to anyway when chemo wasn't in the picture (maybe not as short then) and really don't want to spend the money now but am ready. I have found a charity online that will take 6in donation rather than 8in which would be at my scalp. I'm not ready be bald yet! And maybe dye it purple...make the last few weeks of hair really interesting!

  • lmencken
    lmencken Member Posts: 77

    Seq24 and kd. And cc216....someone told me 2 weeks after hers went but I guess it varies according to cocktail....that takes me to my son's 12 bday. Happy birthday..wanna shave mom's head??!!

    So seq24I hear ya about going to your daughters ceremony..normal reaction because we don't know what we are getting. I think once we see and shop for our wigs we may feel better. I've seen wigs look amazing. ..congrats to your daughter by the way..my middle daughter is a senior..my oldest at college.

    All...we need to feel pretty and not self conscious so I guess don't settle..right? Whether you scarf it or wig it or go au natural ..

    I just want to look like ME..for me...so I'm wigging it

    Apparently at! my first treatment they will show me wigs amd how to do scarves.and pencil your eyebrows on..yikes!

    It's the before part that we need to overcome. I guess I will get my wig on my first treatment and be ready. I guess I'd rather pick a day before the clumps fall..especially if I'm at work! I will need to psych myself up for this though!

    Let me know how.shaving goes if you guys do it..and who the heck do you get to do it???!!!! Not sure I want my husband doing it!!

    Happy labor day..going to have more than a few drinks this weekend!




  • bagsharon
    bagsharon Member Posts: 142

    Hi CC2016,

    I just got my wig from the American Cancer Society today. It's free and if I end up not needing it, I'm sure I can donate it back for somebody else. I plan on wearing hats and scarves in situations where people know me but when I want to run an errand and not have those pitying looks, that's when a wig will come in handy.

  • beebs2704
    beebs2704 Member Posts: 88

    I'm joining the group of you September ladies...just found out yesterday, well had to make the choice of whether to have chemo or not ( those dreaded intermediate Oncotype scores!). I'll be starting Sept. 16. Somehow doesn't feel real.

  • kdtheatre
    kdtheatre Member Posts: 145

    CC2016 - what is the hair site? I may want to donate...

    Also just found out that the surgical biopsy also changed my grade to a 3 (from 2), ALONG with my new Her2+ diagnosis. Ugh. Anxiety ensues.

  • Heidi000
    Heidi000 Member Posts: 17

    It still doesn't feel real. What is your Oncotype score and which chemo? I think I'm the other "low intermediate" on here.


  • MFalabella
    MFalabella Member Posts: 105

    HI All,

    Ihad my first infusion today, It went well, and besides feeling tired I feel okay. I did not get benadryl with my AC, the red devil had me snoozing in about 7 minutes, and now I am peeing pretty pink urine lol. Nayda, glad the fluids are helping, did you try gaviscon? I hope all of you are well and will catch up more later.

    love and blessing,

    xoxoMichelle

  • CC2016
    CC2016 Member Posts: 94

    The 6in hair donation site I found was http://360-hair.com/how-to-donate-hair/ I tried contacting them a few days ago but still haven't heard back, although I did get an auto reply. I hear Pantene is a great option if you have 8+ inches. Looking up wig info now while watching cartoons with my girls. Totally need a super long purple ponytail now, with totally b*y attitude to go with it ;)

    Not much consolidation but I've read that grades 2 and 3 are just about interchangeable - think there are a few posts here with better data than my memory. In my case they said grade 2/3. Nothing like a "dunno" diagnosis

  • beebs2704
    beebs2704 Member Posts: 88

    Heidi,, my Oncotype score was 26.. IMO it was on the "wrong" side of the intermediate range thus my choice to do it. What was yours?

    taxotere and cytoxan is my cocktail..4 rounds. I've updated my profile so it shows that.


  • lmencken
    lmencken Member Posts: 77

    beebs..ypu are within a day of my start and my cocktail...i am a 20 but with LVI which swayed me.

    Kd..sorry about your new grade..but remember you are doing the best therapy for you...hang in there!


    Mfallabella.Glad you did well today

    Keep moving forward everyone!


  • seq24
    seq24 Member Posts: 451

    AHHHH!!! That's all I can say!!!! I had my chemo education class today. I am freaking out! The list of SE is a mile long, the number of prescriptions and OTC meds is not quite a mile long. Totally in panic mode now! I was told in so many words to expect to feel completely horrible! I don't know if they have to tell you that, but that's what they said. I was (am) freaking out over this. It took everything I had to sign the consent form and my hand was shaking so much it didn't even look like my signature. Then they took me to the infusion center. Bad idea!! I thought I was having a panic attack! The nurse asked me if I needed help up the stairs. She said hair will fall out 7 days after the first infusion. I thought I could hold onto my hair a little longer than that. OMG! OMG! OMG! I don't think I can do this!!!

  • loriann
    loriann Member Posts: 2

    Hello everyone! Looks like I am joining the party...again! My first go round was in 2007. IDC in the left breast and lymph nodes...did chemo first (dose dense ACT) followed by lumpectomy and radiation. Now here I am almost 9 years later...IDC, same breast. In just 2 weeks I have had a mammo, an ultrasound, a biopsy, another mammo, genetic testing, a pet scan, a muga scan, 2 oncologist appointments and one surgeon appointment...along with work! I forgot how fun this all was! LOL


    Saw the oncologist today and all results are in...triple negative like before, BRAC2 positive, pet scan clear and muga looks great! I will be doing chemo first again but a new combo this time, Carboplatin and Gemzar, followed by a bilateral mastectomy with reconstruction and then some work on the ovaries somewhere in not so distant future. Port insertion is next Thursday with first chemo the day after, September 9th...2 days after my 51st birthday.


    Other than some tears..ok..alot of tears the day I got confirmation, I am doing way better than last time...its the unknown that is so scary....but I have done this before..and I will do it again...and again...for as long as it takes! My grade 3 cells responded amazingly to chemo the first go around and the tumor was completely gone when surgery time rolled around. The new cocktail makes me a little nervous just because I KNOW the other worked so well...but new studies show promise with Carboplatin for triple negative.


    I shaved all my shoulder length hair off the first time around (yeah..that sucked!) and after reading mixed results for Carboplatin and hair loss I am going to test the waters and see what happens....I am expecting complete loss so if I get something less it will just be a nice surprise. I work full time and am going to try to continue that with a modified position and will be having chemo on Fridays and take the weekend to regroup!


    I look forward to chatting with you all and following along on this journey we are all making! Best of luck to all of us!!



  • MFalabella
    MFalabella Member Posts: 105

    Seq,

    I had my first infusion today of AC, totally no big deal they used freezing spray on my port and I was done in 3 hours. I am a little tired, but thanks to the meds for nausea I am not having any side effects. My best friend shaved my head for me last night and it was the best decision I ever made, it made me feel in control. I hope you get over your panic with deep breathes and I will pray for you. Here is to a good holiday weekend and hopefully no SE.


    love and light,

    xoxoMichelle

  • seq24
    seq24 Member Posts: 451

    MFalabella--thank you! I'm just totally overwhelmed right now. I think this is all hitting home with husband too. He's been really quiet since we've been home. I seriously felt like they were leading me to some kind of torture chamber when they took me to the infusion lab. It's a good thing there were only like 2 people in there and I couldn't really see them or I really would have freaked out. Thanks for your encouragement. Please PM me or post how you're feeling over the next few days. I think that's what scares me more than the infusion part. The nurse today more or less gave me the whole list of side effects and basically said plan to have them all. I'll be thinking of you! Take care of yourself.

  • smilethrupain
    smilethrupain Member Posts: 133

    tessu, thank you for your note about cold treatments for taxotere. I'm starting TC in the next couple of weeks. Will remember to ask for them. Worried about alopsia as a side effect :

  • seq24
    seq24 Member Posts: 451

    I got a free wig from ACS and because of a fiasco and bad service at our local office I got a random phone call from another office across the country. Not sure how they got my name or knew what happened but she sent me a bunch of pictures of wigs she had at her office. I couldn't decide between two so she is sending me both. She said to choose the one I want and return the other ones to the local office. Very nice of her. I also purchased a really nice wig that I had seen a month ago at a wig boutique. Should have it tomorrow and taking it to my stylist next week. This is just more that is really making the reality set in. Not sure if I will be able to shave my head though. Between that, fear of the actual infusion and the wonderful news I got today of all of the side effects I am sure to have for an extended time (according to the nurse), Im feeling pretty hopeless right now. And for those of you who are familiar with my posts, I am yet again CRYING!! Thanks for your support everyone. Don't know what I would do without all of you.

  • smilethrupain
    smilethrupain Member Posts: 133

    beebs, it doesn't feel real until I read about the SE of chemo. Would be worse when I have to tell my eldest who is in 4th grade. So far, only close friends and family know, but kids only know hat mommy is sick, some bad cells needed to be removed... When hair starts going, that is when I would need to have a talk. I don't want a lot of people to find out because of all questions and well-meaning or mundane curiousity, but how do you keep a pre-schooler(my youngest) from telling people that mommy is wearing a wig. It's not vanity... But it takes so much confidence to get out of bed and dressed and out the door, dealing with pity from others would be hard. After mastectomy I went back to work, composed and dressed and did my hair and makeup. But once I found out that onco dx is high enough to do cemo, haven't bothered to pay much attention to my appearance. Had a little cry in the car as I was returning home from work - more like self-pity party. Haven't cried much since the week of the diagnosis😢

  • LisbethS
    LisbethS Member Posts: 88

    Welcome Loriann, I'm BRCA2 positive also.

  • Sr2295
    Sr2295 Member Posts: 22

    starting 9/13 - had my port placed this week - feeling anxious about treatment and struggling with talking to people about my dia

  • paloverde
    paloverde Member Posts: 4

    Hi, everyone. As you can see from the list of treatments as long as your arm in my signature, I've been around the block a fair amount since my initial diagnosis of IDC and BRCA2+ test result. Mostly during the period from Nov 2013, when I was diagnosed, through Sept 2014, when I was pronounced NED, but I've just been diagnosed with mets to the liver as of Aug 2016.

    My active treatment will be TPH - weekly Taxol for at least 6 months, concurrently with Herceptin and Perjeta every 3 weeks indefinitely (basically until they stop working and we have to add or transition to something different).

    I'll receive treatments at a new satellite facility of my cancer center, that was opened one year after I finished my AC-T from the first round. It is only 10 minutes from my home, is modern and cheerful, and I've heard they have private infusion rooms but haven't actually seen one yet. (Still will be going to the downtown facility every 3 weeks to see my oncologist.) This past week I did just a quick walk-around, but I'll check out the infusion area on Tuesday the 6th after my MUGA scan (baseline echocardiogram before initiating Herceptin and Perjeta).

    Thursday the 8th is when they will place my PowerPort. For reasons we still don't understand, my BS who is one of the most highly regarded cancer surgeons in our city implanted a cheaper port for my first round of chemo. It was fine for infusions and for blood draws in the chemo clinic, but no other clinics wanted to use it for blood draws, nor would the imaging department use it for administering contract media for scans! So I had it removed during my BSO/Hyst, and insisted on a PowerPort this time around.

    "The Big Day" for my first T+P+H treatment is Friday, Sept 9th. Kind of nervous about it because, although I've had 12 weekly Taxol in the past, the Herceptin and Perjeta are new to me. Getting everything all at once on the 9th, and I believe the H and P doses are higher on day 1 than going forward, so it could be kind of a shock to the system. Fortunately I have the weekend to recover.

    Which is nice. I was a Thursday girl in 2014, but at this new clinic I'm going to be a Friday girl until further notice. I'm 50 years old and have been working full-time salaried since the late 1980's, so to have essentially a 4-day workweek without taking a pay cut makes me happy. (As in 2014, I'm using sick time and personal days rather than short-term disability.) So does being able to take chemo in this "country club" type environment, though admittedly I haven't seen an actual infusion room yet. Would like to think I've earned it, after all I went through the first year.

    So I don't have any experience with Herceptin and Perjeta yet, except what I've read, but I am more than happy to answer any questions or concerns you may have about dose-dense AC x4 and weekly Taxol x12. AC was pretty horrible, I won't sugar-coat it, but Taxol was easier, though I had peripheral neuropathy that took about a year to resolve. I did work full-time throughout, and may be able to assist with questions you have about balancing work and treatment, managing boss expectations and colleague reactions. PM me anytime, or ask your question here on the board so others can see the response.

    Best wishes to you all who are new to this, and I look forward to us being there for each other. I know I was scared out of my mind before and during my AC-T, thought it was the end of the world. It wasn't, though it sometimes felt like it at the time. Now I feel like, I got this.

  • paloverde
    paloverde Member Posts: 4

    P.S. - A wig that looks fabulous on you, even if you don't wear it all the time, is one of the #1 investments you can make to keep yourself feeling confident, especially if you work.

    Go to a good shop and spend the money, even if it's $150, $200. (I didn't bother with an expensive human-hair wig.) My oncology team didn't bat an eye about writing a scrip for "cranial prosthesis due to chemotherapy-induced alopecia," and my insurance company paid 80% (as reimbursement after the purchase; the shop didn't put in the insurance claim).

    I wore the wig to work and usually went chrome-dome at home (my daughter was 15-16 and my husband wasn't bothered, so it was fine). Going out for errands etc. tended to be dicey. Whether a scarf or a baseball cap, it's obvious you're covering something up, especially with brows and lashes being gone. If I do lose my hair on Taxol, which is not guaranteed (last time it was actually growing back, from the AC loss, while I was on Taxol), I'll probably wear the wig in more situations than I did in 2014.

  • CC2016
    CC2016 Member Posts: 94

    smile... I get where you're coming from with keeping it quiet around the kids. I've got 7th and 2nd grade girls. I didn't want to let my kids know anything at first but my husband started telling people immediately (basically his coping mechanism I came to realize) so let them know about a week later that I was going to be getting sick. I wasn't expecting chemo but now that I'm on track to start soon I've let both their teachers and counselors know at school so they can help keep an eye on them. An maybe be a bit more accepting and understanding to any unexpected emotional SE they might have. Plus they are in new schools, in a new state, with no built in friends this year... I need someone on the inside for my own sanity. And as BC strikes many, it turns out the middle school counselor went through this while her daughter was in middle school. It's not telling people so they pity you, sometimes it's for a support system that you couldn't even imagine would be there. Just my take on it.

    Beebs.... Looks like we're pretty close in dx but my onco was 22. MO recommended chemo but said it was my decision. I was actually wishing my number was +/-5, or even 3, to make it not so middle!

  • beebs2704
    beebs2704 Member Posts: 88

    Smilethru: I have never been great at accepting help from others...I'm very independent and what I am slowly learning is how to accept help from others. As CC wrote, it has helped me that others know because it has expanded my support system a lot. It is, of course awkward to tell people who are not in my inner circle eg. Neighbours but I'd rather they know than not and avoid me! My kids are older so they know everything ( well, not everything of what I am going through at an emotional level).

    CC, lmencken: yep, making that chemo decision in that intermediate / gray zone was tough, however thankfully it wasn't >30 . Easier decision, but worse result

  • seq24
    seq24 Member Posts: 451

    Sr2295--I'm right there with you! I have struggled with so many things as people on this site already know. Still not coping well, but one of the worst things is having to talk to others about it. When they ask "how are you doing" I immediately turn into a bucket of tears. It is so hard! PM me if you would like to. I can totally relate to you!

    paloverde-you just answered a question I had. I was told in my chemo ed class yesterday that hair grows back once Taxol starts after AC. I didn't know that. Is that always the case? I know someone who is almost done with treatment of Taxol only. She lost her hair early and it still has not grown back. I just talked to her and asked and she said she has absolutely none yet she still has her eyebrows and lashes. How soon do you lose those on AC? I've heard some people don't. So many uncertainties with this!!!

  • Leydi
    Leydi Member Posts: 53

    Decided to join this group - started dose dense AC chemo on Weds, Aug 31 which will continue for 4 treatments, followed by 4 treatments of T. I really like my MO BUT:

    1. No chemo class was offered, I was just handed a thick folder of paper copies from the Chemocare website while I was already being infused with my first treatment.

    2. Lab tests were on time. Visit with the NP/doctor was a little late. Chemo didn't start until 1.5 hours after my appointed time.

    3. One person is allowed to accompany the patient into chemo treatment but there has been no planning/effort to make them comfortable. My husband came back with me but there was no chair for him to sit in; the nurse finally said that he could "look around" for a chair. There is no space for the companion's chair so they have to sit out in the middle (somewhat blocking access by the nurses). Although I had a comfie reclining chair, the companion chairs were old-school hard plastic without arms. After about 10 minutes, I told my husband to leave. I wasn't having him sit there like that for hours!

    4. The snacks offered were all pure junk - soft drinks, chips, and cookies. Really?!? This is what you offer sick people? Fortunately, I brought my own cooler with drinks, snacks, and ice. No one had informed me to bring ice but when the nurse started the A treatment, she asked if I had brought ice. Yes, because I had researched online but not because anyone at this office suggested it ahead of time!

    5. I didn't have a nurse assigned to me, even though this was my first treatment. Instead, there were nurses just cruising the floor and paying attention anytime someone's IV stand beeped an alert. I had no less than 5 nurses throughout my treatment. They were all kind, efficient, and answered any questions that I had but I would have appreciated a little more continuity.

    On the plus side, I have had only mild side effects so far from the first AC treatment and Neulasta; I'm on day 4. I don't feel well but it could be so much worse. Trying to keep up walking each day. Drinking all the fluids recommended is tough when you are feeling nausea. Seems to help a bit to eat a little every 2 hours. I don't feel like eating but feel better afterwards.

    Still making my way through all the posts on this thread. It is moving fast!


  • nayda985
    nayda985 Member Posts: 270

    Wow a lot of new faces..lol..Welcome to the crazy train...CC, Beebs, Lori, Sr, Palo, and Leydi!!!

    MBella = Glad your first treatment went well lady!! I didn't get benedryl also..I haven't tried the Gaviscon yet...i saw it in the store yesterday and the other OTCs..they are high priced though...i can get the dr. to write me a script for the same thing and get it cheaper in the pharmacy..so on my next visit on this coming friday..i am going to tell my MO to write me a script...b/c i ain't paying all that...lol...and "freezing spray" what does that do on your port..does it numb it?

    Ware = Glad you also had an okay chemo day...what type of chemo mouthwash do you use??

    Sam = It is great that port surgery went well for your wife and her clean scans..YaY!!!

    KD = I did the Zofran with the Compazine together for 5 days..then stopped the compazine and did the zofran for another 2 days..then stopped the zofran...so far no nasea....so i will do that again on my next treatment this friday coming.

    Seq = I beg to differ on the hair time frame your chemo teacher gave you..b/c i was told hair would start coming out 10-17 days after chemo..or a couple days after your 2nd treatment..b/c i did my treat of A/C last friday a week ago and my hair hasn't came out at all...i will be looking for it to start after my next treatment this friday coming on the 9th.

    Palo = sorry you are here lady with this recurrence...did you feel a lump or did you go on a scheduled mammogram...and i have to say you have a great attitude...for this being a recurrence.

    Leydi = Wow @ your first treatment lady......BOOOO at your cancer center....that is not how they were suppose to treat you and your family. 1....you suppose to have chemo class to discuss s/e and any questions you may have..2. they were suppose to do chemo class before your treatment..(wth!!)....3. appointment suppose to start on time....4. 2 ppl are suppose to be able to join you in your room with comfortable chairs already in the room.5...suppose to offer non junk food and juices to drink..a volunteer or you own nurse suppose to constantly check on to make sure your comfortable ..6 you suppose to have one nurse assigned to you lady....other than that slack chemo center its you good that you are doing well lady.

    Lori = sorry you here with us too.....i do my chemo on fridays too lady.

    Hope everyone have a good labor day!

    I am finna drink my 5 bottles a water and keep my date with the bathroom all day..lol