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I will be doing chemo here shortly (A.C.T.) and them Hormone Therapy. Anyone go through this too?

Lisa W Profile
Asked by

anonymous

Patient almost 8 years
 
  • Sharon Danielson Profile
    anonymous
    Survivor since 2007
    Hi Lisa, Your treatment is a common treatment for IDC. I had 4 AC treatment but not the "T" portion. You are probably apprehensive about the upcoming appointments just because of the unknown. The members on this board are here to help you through this. We've been there, done that and we are alive because of it. The side effect none of us has side-stepped is the hair loss. When I asked my oncologist when I would lose my hair and he, very matter-of-fact said "2 weeks after the first treatment." Dang, if he wasn't right! I was ready for it with a wig, hats, and great scarves. I ended up going "commando" (bald) most of the time. Everyone has different reactions to chemo. My taste and sense of smell changed. I love chocolate and coffee. During chemo, I couldn't stand either. I took a drug called "Emend" for nausea and was not nauseated. The first few days after a treatment, I felt like I had the flu... weak. It always turned around and within 5 days I was back to normal. Be particularly careful about your weakened immune system. Try not to hang around crowds, WASH YOUR HANDS FREQUENTLY, and ask your pals not to visit if they feel the least bit punk-ish. Mention ANY side effects you are having to your oncologist and staff. Do not be afraid to ask questions about your treatment. If you have something that doesn't seem right between your appointments, CALL. I am now into my 5th year of hormone blocking treatment. I am taking Femara and have had some bone and joint pain but it has been tolerable. I'd say, for me, the hot flashes have been a pain but as a friend told me... I'm am just having my own "personal summer." HA! You are always welcome here! We are all sisters and want to support each other through treatments, after treatments, anytime. You just take these appointments one treatment at a time.... just like eating an elephant, one bite at a time! As a post script.... some of the funniest times I had were having my treatments. I was in a room with several other people also having their treatments. We were all in the same boat, someone would start something and pretty soon we were ALL laughing. We wore funny hats, we had "picnics" and we laughed about our circumstances. (my picture is my treatment around Christmas.... reindeer antlers.... and we all laughed) Hang in there gal! You will make it through this. We all care about you. Please keep in touch with us.
    almost 8 years Flag
    • Lisa W Profile
      anonymous
      Patient

      Sharon...
      I can't thank you enough for your info and insight! I'm glad to hav found this site and to hear all these "down to earth" REAL stories of "sisters" going through this. Its good to know that there is a place where actual people "listen"...

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      Sharon...
      I can't thank you enough for your info and insight! I'm glad to hav found this site and to hear all these "down to earth" REAL stories of "sisters" going through this. Its good to know that there is a place where actual people "listen" and offer help, advise and share stories about their journey. I really appreciate it.
      And you bet, I WILL be a "frequent flyer" on here, I feell like I have found a comfortable place w/in the "wide world of the internet"...

      almost 8 years Flag
  • Evelyn Heilbrunn Profile
    anonymous
    Survivor since 2012
    Yep, I have my last ACT treatment this week! I'll probably be on Avastin afterwards. Everyone reacts differently to this combination. I had practically no nausea or vomiting. The exhaustion and fatigue are what really have gotten to me, as well as general weakness. I was in pretty good shape when I started chemo last November, but now I get out of breath going up a flight of stairs. I always use a cane because I have Parkinson's, but with the chemo sometimes I use a walker because I'm so weak and unbalanced. I have a slight allergy to the Taxotere. I break out in red spots all over my torso, arms, and face, and I feel like I have head allergies. I also develop a wicked headache. Benadryl tabs take care of it. The Neulasta shot I get the day after chemo also can have some side effects. During my first 3 treatments or so, I would develop terrible bone and joint pain. Neulasta is intended to encourage white cell production in your bone marrow, and that causes the pain. But I haven't had much of it the last 2 treatments. "Chemo brain" can be a challenge, too. I started to forget a lot of things such as names, where I left things, and most particularly whether I had already told someone something. I end up repeating myself several times; everyone is so nice not to harp on the fact that they've heard it before. Take it day by day and don't anticipate anything, because it may not happen. Take it as it goes. If you do get a side effect or two, stay on top of them whether it's nausea/vomiting, pain, or other things. Your doctor should give you medication for any of the side effects -- just don't let them get full-blown before you take the meds. Best of luck!
    almost 8 years Flag
    • Lisa W Profile
      anonymous
      Patient

      WOW! Congrats on the last treatment! Thank you for believing in me and giving me "wonderful" insight as how the chemo effected you. I know chemo effects everyone diffeerently so its good to hear diffeerent true stories, instead of the "oh, it made...

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      WOW! Congrats on the last treatment! Thank you for believing in me and giving me "wonderful" insight as how the chemo effected you. I know chemo effects everyone diffeerently so its good to hear diffeerent true stories, instead of the "oh, it made me a little sick, but it was okay" story.
      "Chemo brain", this is a "new" term for me. I haven't heard of this yet. I'll have to look into it.
      Thanks again and sending healing hugs, blessing and positive thoughts your way!
      Lisa

      almost 8 years Flag
    • Evelyn Heilbrunn Profile
      anonymous
      Survivor since 2012

      You are so welcome. There are so many weird things that can happen to you during chemo! My oncologist's office had a sort of "welcome to chemo" class, if you want to call it that. Check to see if your doc has something like that, or maybe the...

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      You are so welcome. There are so many weird things that can happen to you during chemo! My oncologist's office had a sort of "welcome to chemo" class, if you want to call it that. Check to see if your doc has something like that, or maybe the local American Cancer Society has one. It gave me some idea what to expect. If you would like a copy of the materials, let me know here and we can more privately exchange e-mail addresses or you can give me your fax number.

      I forgot to add a few things to my earlier answer. There's a risk that your nails can turn black on ACT. Yick. My toenail beds have turned black, but that's all. My fingernails are all warped and weird looking. Also, thanks to the Prednisone I get with the chemo, I've gained weight and have retained a lot of water.

      You almost definitely will lose your hair, head to toe. It's really discomforting at first but you get used to it. Also, it takes you much less time to get ready to go out! I found some scarves online called BeauBeau scarves -- check them out. They're already fitted so you just slide them on. They have tails so you can "design" the back. I have to stay away from silk scarves because they slip right off my head -- nothing to hold them on!

      With regard to makeup -- I have lost my eyebrows and eyelashes. There's a good video on YouTube -- here's the link. http://www.youtube.com/watch?v=Ggb-8fm9BVU
      The woman is a bald chemo patient and does a good job showing you how to put on makeup, if you want to wear it. Personally, I look ghost-like if I don't.

      So there are major and minor side effects. It gets to where you really don't care about the minor ones, and you treat the major ones as directed by your doctor. And remember, it's not forever.

      almost 8 years Flag
  • Diana Foster Payne Profile
    anonymous
    Stage 4 Patient
    Hi Lisa, wow...great advice from Sharon, Becky, & Evelyn! I can't think of much to add to that. Just to say that chemo is totally worth it. I was diagnosed with stage 3C IDC last May. I had 4 A/C followed by 4 Taxol. I had a bilateral mastectomy in Oct. with 15 lymph nodes removed. 13 of those were cancerous with two breaking outside the nodes. Three weeks after my mastectomy, I required 8 more chemo treatments with two different drugs. About the only side effect that can't be controlled is the fatigue. Rest all you can and let people help you. Take your nausea meds BEFORE you start to feel nauseous. You'll be glad you have the port in the long run. As for your hair. I can actually say the fear of losing my hair was greater than when I actually lost it. I wore scarves quite a bit and sometimes went commando :). There is a wonderful organization that will give you one free head wrap. They are absolutely beautiful!!! Very expensive scarves. Check them out. http://www.goodwishesscarves.org/. I am currently in radiation now. I'm also very happy to say that my last PET scan showed no cancer!!!!!!! Becky is right...I do feel that we are strong women!! There is a light at the end of the tunnel. A book that really helped me & gave me strength on down days was "There's No Place Like Hope" by Vickie Gerard. Awesome book!! Come back here often & let us know how you are. Love & hugs my sister. :)
    almost 8 years Comment Flag
  • Becky G Profile
    anonymous
    Stage 2A Patient
    Hi Lisa, Yes, I just finished all of my chemo rounds. I did 4 rounds of A/C, every two weeks. Then, I did 4 rounds of Taxol, every two weeks. The Adriamyacin (A) is the one that causes your hair to fall out. Mine started falling out on day three of my second treatment, so day 18 from starting treatments. I recommend just shaving your head the minute you feel like your hair is falling out. You are the one in charge!!! My sense of smell and taste were really effected with the A/C. I couldn't even smell the hand soap we use or it would get me nauseous. I highly recommend getting fragrance free products. You will get super fatigued and nauseated. Just remember to rest and take your anti-nausea meds. I took Zofran for days 2-4 and then was fine after that. Until the next round of course! With the Taxol I have had much different side effects. I, of course, am still fatigued. However, I have neuropathy (numbness and tingling) all over my body (even my tongue), but it has settled mainly to just my hands and feet now. I am hoping this won't last too much longer since I will not be having any more chemo!!! Some of my other side effects are night sweats and hot flashes, heart palpitations, headaches, and metal taste in my mouth. You will feel gross, but, it works and worth it. My tumor has shrunk considerably (started at 5 cm). I find out exactly how much this next week. I will be having my mastectomy at the end of the month, then radiation, then 5 years of hormone therapy and reconstruction probably a year from now. You can do it. Get help with meals and housework, and child care (if applicable). We are here to help you get through this. Please keep us updated. Hugs, Becky
    almost 8 years Flag
    • Lisa W Profile
      anonymous
      Patient

      Becky!
      WOW! Okay...I'm thinking I can do this, even with all the "not so good" side effects. My Dr is great and he went over the time line and side effects but it sure helps to hear it from someone who is going through it. Puts it in a whole...

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      Becky!
      WOW! Okay...I'm thinking I can do this, even with all the "not so good" side effects. My Dr is great and he went over the time line and side effects but it sure helps to hear it from someone who is going through it. Puts it in a whole different perspective.
      I'm having the "port" place this Fri (3/16) and feeling pretty anxious and nervous, I'm hoping it will go quickly. I have the "pre-op" tomorrow (3/14), I'm hoping there will be some good meds given so I won't feel anything. LOL! After the port is placed, I have my cardio -echo on the 3/20 and then will be given my chemo start date on 3/23. Seems like so much just to get started. Sheesh...i'm hoping I can be as strong as the women on here....
      I'm pretty sure i'll more questions as this new challenge/journey starts.
      Thank You Again...
      Love Strength & Hope
      Lisa

      almost 8 years Flag
    • Becky G Profile
      anonymous
      Stage 2A Patient

      Lisa,
      You will do great! I am soooo glad I had the port. It makes it so much easier. The port placement surgery is really simple. You will be a little sore for a few days but you will be so glad that your veins are not eaten up! Be sure to...

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      Lisa,
      You will do great! I am soooo glad I had the port. It makes it so much easier. The port placement surgery is really simple. You will be a little sore for a few days but you will be so glad that your veins are not eaten up! Be sure to get a prescription for lidocaine cream to put on your port an hour before your port is accessed. You won't even feel it. It's wonderful. Anything to help this awful process go smoother I say.
      You are strong! I am convinced that cancer picks only the strong ones!!!
      I will be having my MRI on Friday so I will be thinking of you as I am hanging face down!
      Are you getting ACT all at one time or splitting it up? I did dose dense chemo (every 2 weeks) 4-A/C and 4-T with a total of 8 treatments.
      Here are a couple of other web sites that have helped me a ton.
      www.happychemo.com
      http://increaseyourhappiness.com/
      Get your support in line now because you will need it when you are hit over and over during chemo.
      Luck to you on Friday and happy healing hugs,
      Becky

      almost 8 years Flag
    • Becky G Profile
      anonymous
      Stage 2A Patient

      Lisa,
      I would be interested to hear your experience with your mastectomy. I guess we're doing our treatments flipped. I have my mastectomy coming up (hopefully the 28th of March). Right side, total, with lymph node removal. I have 2 positive...

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      Lisa,
      I would be interested to hear your experience with your mastectomy. I guess we're doing our treatments flipped. I have my mastectomy coming up (hopefully the 28th of March). Right side, total, with lymph node removal. I have 2 positive ones right now. We'll see what the MRI says on Friday.

      almost 8 years Flag
    • Lisa W Profile
      anonymous
      Patient

      Becky,
      Thank you for the support! Yes, looks like we are going through our treatments in reverse. I will check out the websites you listed and thanks for helping me feel better about the port placement. Ah...yes, I remember my MRI, it actually...

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      Becky,
      Thank you for the support! Yes, looks like we are going through our treatments in reverse. I will check out the websites you listed and thanks for helping me feel better about the port placement. Ah...yes, I remember my MRI, it actually wasn't too bad, I had some earphones and got to listen to some good music. It actually goes quick. I was actually suprised. =)
      My treatments will be: 4 A/C every 2 weeks, then the T with a total of 12 treatments once a week. Then I start the hormonal therapy. I think its called Tamoxifen. I need to learn the na,es of all the different drugs, gosh, I can't even pronounce some of them.
      I will be thinking of you too as you have your surgery. I have to say everyone prior to my surgery was fantastic. Their were patient, understanding, comforting, "funny" and just plain wonderful. Recovery was the same. I really give it to the nurses who are helpful and understanding.
      Coming out from the anesthesia took me awhile, from what I was told. But once I got to my "room" the "button" became my "friend". The pain meds. I had a little of discomfort but nothing that was "horrible". I woke up to 2 drains and a surgical bra, that to this day, not quite sure how they put that on me. LOL! I thought to myself, how the heck am I going to manage these drains. But I was lucky and had my family and Home Health Nurses come in every day to help with dressing changes and drains. The drains stay in thill I had less than 20cc in a 24hr period. Your Dr and nurses will go over the directions with you and give you some "supplies". I was given a WONDERFUL GIFT- it was a "comfy shirt" that had "pockets" to hold the drains in, it was clever! The web site if interested is called - Healincomfort.com. Its amazing! Nobody really mentioned the "after" part and I didn't realize how many shirts that I didn't have that were "post surgery/mastectomy" friendly. So, comfy, loose fitting, button/zipper front tops is a PLUS! My scar is healing nicely and I'm now able to "LOOK" at myself and think, WOW...I made it!
      I too, had the right side, total, with lymph node removal. My "first" surgery, my Dr. removed 4 nodes. Which 3 of the 4 came back "postive" with the cancer. Then I had to go back in for a second surgery to have more lymph nodes removed. Second time was 15 nodes removed, all came back CLEAR!!! She went in through the same incesion site and still healing nicely. I got 1 drain in the second surgery, this one was not comfortable at all, due to the placement. Thank goodness it wasn't in for too long.
      I'm now starting some physical therapy, to help with range of motion. my First appt will be on the 20th. I hope it will go okay, considering I will have my port placed on the 16th.
      I'm sure you will do great!! I hope to hear back from you!
      Sending Positive thoughts and prayers from miles away..
      Lisa

      almost 8 years Flag
    • mary  o sullivan Profile
      anonymous
      Learning About Breast Cancer

      Is d side affects of chemo ACT bad tks.xx

      almost 6 years Flag
  • mary  o sullivan Profile
    anonymous
    Learning About Breast Cancer
    Starting ACT tomorrow wat way was ur side affect so nervous feel like i dont want to go
    almost 6 years Flag
    • samantha kowalczyk Profile
      anonymous
      Learning About Breast Cancer

      Hi Mary!
      I start ACT next week. Perhaps we can go through this together? Stay positive...try to envision the meds going into you as pure white healing light. Also, ask if you can take a anti-anxiety pill before to take the edge off.

      almost 6 years Flag
    • mary  o sullivan Profile
      anonymous
      Learning About Breast Cancer

      Hi samantha how did u get on in ur first session of chemo.i was tired and fatigue.my muscles and bones were sore 3days after it.xx

      almost 6 years Flag

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