Starting Chemo May 2017

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  • ParakeetsRule
    ParakeetsRule Member Posts: 571
    edited April 2017

    I'm in Maryland, a few miles from DC! Summers are hot and super humid and we're getting an early preview this year: on Saturday the forecast is calling for a high of 90, yes NINETY degrees. What's up with that?! It's not even May! Oh well...

  • Rukoni
    Rukoni Member Posts: 21
    edited April 2017

    Hi, ladies!

    I'm still waiting to find out when I'm supposed to start chemo, but it will probably be in May. My MO said that I would be receiving four doses of taxotere and cytoxan. Neulasta shots were, also, in the plan, but my insurance won't cover them; I think I'm just going to ride that one out, try my best to stay healthy and infection-free, and hope for the best. I'm looking into cold mittens and booties for treatment, because they're supposed to prevent neuropathy. Is anyone else doing this? Any recommendations would be awesome! Also, I've read that dark nail polish helps.

    As far as hair, I'm thinking about getting my hair buzzed and styled into a (short) mohawk... because why not?

    Positive vibes to you all! We're strong and will get through this! <3<3<3

  • msrobin58
    msrobin58 Member Posts: 134
    edited April 2017

    I had my port placement yesterday, and even though it went smoothly, I'm in a lot more pain than I thought I'd be. I'm icing often and taking Tylenol. Today was my echo cardiogram, because insurance denied the Muga heart scan. I checked with my daughter in law the doctor, and she assured me they are very comparable tests. Tomorrow I meet with my MO again and have my CT scan. AC+Taxol starts May 3, a week from today. It's the day after my 59th birthday, some present, huh? I keep saying "I can't, I just can't do this!" But then I remind myself that I have no choice. I have to make sure to kick it hard enough so it doesn't come back. Still, I'm terrified.

  • lrwells50
    lrwells50 Member Posts: 254
    edited April 2017

    I start in a couple of weeks. I've had lots of fluid from my bilateral on 3/8, and they have been aspirating it when I go for my fills. It's finally starting to slow down, so after another fill, and maybe aspiration, week after next, I'll start the chemo. The local MO sent off for an OncotypeDx, and it came back a 24, smack dab in the middle of the intermediate range. He wanted to do AC + Taxol, 8 treatments, but my second opinion MO at Baylor Dallas said he thought that was overkill, and said they do 4 treatments of Cytoxin and Taxatore over 9 weeks, so the local MO agreed to that. I'm glad it was amicable, because I really didn't want to have a two hour drive to get home from Dallas after a treatment. Have to call today to set up the port placement.

    If I'd gone to the Dallas guy first, he wouldn't have done the Oncotype, and we wouldn't be having this discussion. It's hard not to resent that, but the cancer is clearly nastier than they first thought, and I think if I'd chosen no chemo, I'd just be worrying about it all of the time. I really dread it, but I only live 5 minutes from the cancer center, and I'm 66, so I don't have kids at home to worry about, and I don't have to worry about my job, because I work for my husband, a CPA. We got past tax season, and this is the slowest time at work, so I'm good there. I'll have to shop for a wig, because I won't be comfortable with just scarves. The only real dread I have is any permanent neuropathy or baldness, and I guess I'll just have to hope for the best

  • tonyaberryman
    tonyaberryman Member Posts: 85
    edited April 2017

    dimetriamajor1,

    I started chemo on April 3rd, every other week for 8 weeks, of Adriamycin/Doxorubicin. I was a complete basket case, before & after my first and 2nd second treatment it was ridiculous to say the least. I am human, I have breast cancer..........I have that right by gosh! My oncologist had to put me on depression meds & a sleeping medication. The sleeping pill just kicked in last night after 3 days of taking it and only sleeping (2) nights for the last week, oh and working with no sleep as well. I live alone as well, in a small town with 2 dogs and a cat. My Mama & Sister live near by, but my Mama owns her own restaurant and constantly works, so I'm alone a lot and my BF (man of my dreams) lives 45 minutes away, has a swing shift job and has a 13 year old daughter, which he has A LOT. My children live in Florida and yes, I feel very, very lonely at times........I cry a lot....I try to read my Bible....I pray...I beg....I cry. It's hard when you are "walking through this" alone.....nobody at home to talk too. My Mama takes me to chemo every other Monday and I started going home with her after chemo #2, I went home by myself after #1, just can't do it again, too much for me. The first one was rough, I think because I was by myself afterwards and still scared to death, the second one...........it wasn't as bad, I drank SO MUCH WATER during my treatment, I think that helped a lot, I don't care for water, but I have no choice. I do not work during chemo week, I can't, I'm too weak to drive and accomplish anything (I work for a very understanding man who had cancer before). NOT EVERYBODY IS THE SAME, so please don't feed into what others have felt after chemo.......it will just fuel the burning pit in your stomach, it's not worth the worry at all. I still have a small pit in my stomach, I have a hard time eating during chemo week and even now, I've dropped 20 pounds in the last 5 weeks, it's my nerves and I guess the chemo. I'm not the same person I was before March 20th 2017 AT ALL and that it really sad, but I'm trying to climb this huge mountain and get back to my fun loving, happy go lucky, positive attitude, take the bull by the horns self! I don't want to do this at all, but I have no choice.....either I take all theses chemo treatments and have a double mastectomy or.....the alternative......that's it...period.....I just let my doctor tell me what we are gonna do and do it. She has my best interest and I truly believe this. I hate that we have to go through this, it stinks, but I know God has a purpose for everything and I really believe that. I'm here for you, I wish I could give you a hug.

  • lovepugs77
    lovepugs77 Member Posts: 296
    edited April 2017

    Irwells50, the uncertainty of all of this is truly frustrating, isn't it?

    My MO's office just called - the PET scan was approved by my insurance, so I get to do that rather than separate CT & bone scans. The nurse said they initially denied it, but he fought with them and requested a peer to peer review and finally got the approval. I really love my oncologist.

    So, consult with surgeon, MUGA, chemo education with nurse, and consult with my MO's insurance specialist tomorrow. Busy day. Then PET scan on Tuesday and follow up with MO on Wednesday. The only thing left to schedule is my port placement, and I think I'll know about that tomorrow when I have the appt with the surgeon.

    Has anyone had a PET scan? Any idea how long one takes?

  • ParakeetsRule
    ParakeetsRule Member Posts: 571
    edited April 2017

    I had a PET scan. The scan itself didn't take very long, maybe 10-15 minutes? But I had to sit around and wait for about an hour before it started so the tracers they inject had time to disburse. It was really easy though!

  • BCFighter2017
    BCFighter2017 Member Posts: 45
    edited April 2017

    msrobin58 The port procedure went fine but my neck , chest were really stiff from past two days. I wasn't comfortable lifting my right hand all the way up . Had to take tylenol initially but its getting better now. Today is a lot better

  • tonyaberryman
    tonyaberryman Member Posts: 85
    edited April 2017

    Started chemo 4/3.

  • msrobin58
    msrobin58 Member Posts: 134
    edited April 2017

    I've only been with this group a few days, and I can already say I'm sure glad I did. It's so helpful to compare notes. I'm going in for a CT scan this afternoon, but had another visit with the MO this morning so I could ask questions. I like him much better this time, as his first impression wasn't that great. But then again, he had just given me some very bad news! I also spoke with the patient advocate nurse, and both of them gave me all the time I needed for questions. We toured the infusion room. I found it intimidating of course, but when we got to the section facing the trees, I found my discomfort fading. I'll ask to always be placed facing that wall of green since it seemed to reduce my anxiety. Maybe I can do this after all?

  • lovepugs77
    lovepugs77 Member Posts: 296
    edited April 2017

    msrobin, I'm glad to hear your experience today was better. The section facing the trees sounds nice. I noticed at my infusion center that there is a pond just outside the windows. I'm hoping to be able to sit facing that. I am confident you can do this. I think we are all stronger than we give ourselves credit for. We just don't know it until we are facing something like this and have to force ourselves to deal with things we never imagined we could.

  • msrobin58
    msrobin58 Member Posts: 134
    edited April 2017

    Dimitria, I feel your burden is heavy right now, but even still, you sound a bit better already. Like we've all said, we don't think we can do it, but we have no choice! I have a friend who is fond of saying they are always happy to wake up on the green side of the grass. It always makes me chuckle, but it's the truth. Some days I get tired of proving how strong I am. But here I go doing it again today. Hang in there ladies, brighter days on the horizon with the green grass below our feet where it belongs!

  • tonyaberryman
    tonyaberryman Member Posts: 85
    edited April 2017

    Just had a thought.......make sure you place the numbing cream on your port area 30 minutes before accessing. I place a huge amount over my port and then place a clear strip, like a band aide over that, you won't feel a thing when they begin treatment, I promise. Drink LOTS of water, relax and just know, you are one step closer to being cancer free.

  • TooQuiet
    TooQuiet Member Posts: 12
    edited April 2017

    I start May 9 with 12 weeks of Taxol + Herceptin. I went for an infusion teaching session on Tuesday, one-on-one with a nurse to learn about the process and the side-effects and tour the facility. As others have mentioned, I'm worried about the potential neuropathy. My mother is an ovarian cancer survivor (it's been 11 years since her diagnosis), and she had Taxol as part of her very aggressive treatment. It left her with permanent nerve damage in her hands and feet. My MO says her dose was probably higher than mine will be, and taking Vitamin B-6 might help. I'm hopeful! This is really the only side-effect I'm afraid of. I'm going to shave my head as soon as my hair starts thinning, maybe even before. No sense in dragging it out. Best wishes to you all!

  • Jackster51
    Jackster51 Member Posts: 357
    edited April 2017

    Rukoni - If Neulasta isn't covered by your ins.... You might want to see if weekly Taxol is an option for you instead of every 3 week Taxotere. Since it is administered more often, it is a lower dose, so Nuelasta is typically not needed, as your WBC won't crash as hard. They are known to be equally effective - per the studies. Neulasta is very very expensive - think mine was $6000 - $8000 per injection, so you don't want to find yourself needing it. Best of luck - Oh, and I would also recommend cold caps - as I am one of the unlucky 10% that didn't get her hair back after Taxotere.

  • msrobin58
    msrobin58 Member Posts: 134
    edited April 2017

    Woke up sad and worried like I usually do these days. It just seems like such a big mountain to climb right now, and I'm just about to put on my hiking boots. How will I ever make it to the top, and then over to the green valley on the other side? It's so very far!

    Saw this quote we could all appreciate.

    Hope is like the sun, which, as we journey towards it, casts the shadow of our burden behind us.

  • BCFighter2017
    BCFighter2017 Member Posts: 45
    edited April 2017

    Met with MO yesterday and will be starting ACT 8 cycles. First 4 cycles of AC and 4 cycles of T

    Also will be getting zoladex injection on monday

    My mind is kind of blank right now . Just want to get it over it asap

  • LeesaD
    LeesaD Member Posts: 383
    edited April 2017

    Joining this group. Having port placed Monday and hopefully chemo very soon thereafter. I'm starting to panic (which is my norm these days) about the time between surgery and treatment beginning. I had BMX March 27 and then ALND April 17. I just want to get started with treatment. How long have most of you waited from surgery to treatment started and what is the norm? I was originally scheduled for AC-T but after my Oncotype came back a 3 my doctor switching me to C and T. He ordered Oncotype before I had ALND when I only had micromets in two sentinal nodes. Then surprise surprise my ALND came back with 2 of 14 nodes fully positive. Talk about a surprise to everyone. The waiting and the 'scanxiety' waiting for test results is awful. Just got put on some anti anxiety meds.

  • Castigame
    Castigame Member Posts: 752
    edited April 2017

    Hi LeesaD,


    My BMX wo recon but with SNB and ALND was on 02/15/17. My port was placed on 03/17/17 and chemo #1 on

    03/21/17Remember to ask for some strong pain meds for morning after the placement. I just remembered usually a wk after port gets placed, Oncos order chemo.

    Just my two cents about anxiety meds. I take Ativan which helps w anxiety , sleep and the med is good for mild nausea. During my first AC, my appetite was good enough. But i had severe diarrehea probably from 3 steroids I took. I dropped 9 pounds before second chemo. I was hesitant because it is anxiety med. After I saw "for nausea", I have been taking twice a day 0.5 mcg.










  • cdv4251992
    cdv4251992 Member Posts: 158
    edited April 2017

    I had a unilateral DIEP on 3/2 and they placed my port at the same time. Had I not gotten an infection, chemo was scheduled to start 3/30. Last time my port was placed about a week before my first AC treatment. The lab tech removed the steri strips that were still firmly in place.

  • notanisland
    notanisland Member Posts: 142
    edited April 2017

    Hi LeesaD, Scanxiety is an excellent descriptor for this roller coaster ride of BC diagnosis and treatment. I told my PCP that I am sometimes paralyzed with fear and haven't had a full, good night's sleep since she called with my biopsy results on 4/12. She prescribed buspirone (5 mg, 2X a day), which has to be taken continuously. Now I'm sitting here reading the "How to Use" and "Side Effects," and really weighing the benefit to risk. "When this medication is started symptoms of anxiety may sometimes get worse before they improve. Dizziness, drowsiness, headache, nausea, nervousness, lightheadedness, restlessness, blurred vision, tiredness, and trouble sleeping may occur. Rarely, patients may develop movement disorders...in some cases, these conditions may be permanent." Yikes! Plus, it requires taking at the same times every day, under the same conditions (you decide with or w/o food but have to stick with that decision), takes a month or more to feel the full effects and reacts with a number of OTC meds. One of our community members (on a different thread) told me that she has been on buspirone for 15 years and the only SE she has had is fatigue which went away once she got used to the medication. Still, I just don't know if I should risk it. I hope others with experience see this post and comment.

    I met my MO for the first time yesterday - I will be receiving neo adjuvant chemo over a span of 20 weeks (then follow with surgery, radiation therapy and hormone therapy). First, Adriamycin® (Doxorubicin) and Cytoxan® (Cyclophosamide) for 4 treatments, one every other week for a total 8 weeks. Followed by Taxol® (Paclitaxel), 12 treatments, one a week for 12 weeks. He explained that there is really no difference in recurrence rates between chemo before or after surgery, but that neo adjuvant chemo is done to benefit surgery. In my case, my surgeon would like to see the tumor shrink and give me the option for a lumpectomy and hopefully fewer lymph removed.

    No definite start date for chemo yet, but my single lumen port placement has been scheduled for 5/10. Problem is, I've been reading all the posts about port placement and it sounds like there's quite a bit of pain and stiffness for a day or two after. I have a big family celebration that I'd like to show up for on 5/12. Few people (my immediate family, employer and 3 close friends) know I was diagnosed with BC 4/12, and I'd like to keep it that way a while longer. I wonder if my MO would be open to letting me use an IV for my first chemo treatment, then having the port put in before the 2nd?

    I guess that's a question for 5/5 when I go back to the oncology clinic to meet with the Nurse Practitioner for chemo counseling. Maybe I can also ask if the MO can prescribe another type of anxiety medication - one that I can take just when I really need it, and not continually. I take enough meds as it is, and soon I'll be filled to the brim. Doesn't it seem strange to be relying on toxins to make us better? But that's science, and as my MO said to me yesterday, "Cancer is Biology." No wonder that was never my favorite subject.

    I hope you are all doing well and enjoying your weekend. Lots of Hugs and Thanks

    SillyHeart


  • Angeliq
    Angeliq Member Posts: 4
    edited April 2017

    I am starting on Tuesday, May 2.

  • Angeliq
    Angeliq Member Posts: 4
    edited April 2017

    Starting Chemotherapy May 2, that is.

  • eilolr1
    eilolr1 Member Posts: 4
    edited April 2017

    Hi, I am likely going to be starting in May. I have my oncologist appointment this week!

  • ParakeetsRule
    ParakeetsRule Member Posts: 571
    edited April 2017

    LeesaD, I'm not sure what the norm is but a lot of people don't even have surgery before chemo! I'm starting chemo on May 15 and still have no idea when the surgery will be or what type it will be. My mom also did chemo before surgery. I was dx on March 21 and won't start chemo for another two weeks and my doctors seem okay with that, they said it was fine to do the egg freezing first and to spend a week out of town for work.

  • notanisland
    notanisland Member Posts: 142
    edited April 2017

    ParakeetsRule, I am in awe of your positive attitude - this post and others I have seen on different threads exude a sureness that I have been unable to muster. So far. But I'm working on it!

  • Nurseinboots
    Nurseinboots Member Posts: 19
    edited April 2017

    I start neoadjuvant AC tomorrow at 0900. Getting my first round in a peripheral IV just so we can get this party started-- I have a big effing mass that came out of nowhere.


  • suzmaxey
    suzmaxey Member Posts: 3
    edited April 2017

    June for me. I live in NIcaragua and am going back to Texas for the surgery n chemo. Unfortunately, my Medicare doesn't start until June 1 so I am just spinning my wheels this month. I am so scared. Feel free to PM me. I could use a friend. Good luck.

  • msrobin58
    msrobin58 Member Posts: 134
    edited April 2017

    Only two more days till they start pumping me full of poison. Chemo starts Wednesday, my first dose of AC, four total, two weeks apart. Then I'll have twelve weekly doses of Taxol, then radiation. I've already had my surgery, lumpectomy with reconstruction on that side only. Terrified is putting it mildly. I feel like I'm just waiting for a certain tornado to hit. Even though my nodes and margins were clear, my tumor size of 3.9, grade three, and 66 OncotypeDX score guaranteed me chemo. 66! Ugh.

    I did have medicine for the spirit this weekend, as my son and daughter in-law came to visit overnight, bringing my three dear grandchildren. There was no time for worry while they were here. My daughter in law is a doctor herself, so I consult with her by text. She brought me the sweetest chemo care basket, with sea-band, an iTunes card, a blanket, a Sudoku book, and a gardening magazine. She says there is proven research on the sea-band, so it might be worth trying.

  • msrobin58
    msrobin58 Member Posts: 134
    edited April 2017

    notanisland, I did have more pain than I thought I would from my port placement. I used a lot of ice and Tylenol for the first few days, but I was not laid up in any way. You may have a hard time keeping from wincing around your family. But I found if I kept still, I was fine. I didn't realize that the upper incision would show above the neck of almost all my shirts. At first I wore scarves, then I gave up that ruse. I wouldn't delay for this, but that's just me. Just don't get any big squeezing hugs, wear a high neck shirt or scarf, and maybe pretend you have a stiff neck.

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