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Anyone starting chemo August 2016?

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Comments

  • sensitivehrt
    sensitivehrt Member Posts: 310

    Sitting here on the last half of my chemo day 1. Had a "reaction" to the taxotere. Within 3 minutes started feeling flushed, chest got tight, and hurt to breath. The nurses were right on it, gave me 3 medsand all resolved very quickly. Took a break, and retried and everything went smoothly. Nurses are great. Hope everyone is well

  • darab
    darab Member Posts: 894

    So scary Sensitivehrt! Did they think it was an allergic reaction? Hope you continue to do OK! Thinking good thoughts!

  • sensitivehrt
    sensitivehrt Member Posts: 310

    Wasn't a true allergic reaction, but a hypersensitivity to the med. no problems sense. Should be done within an hour.

  • Tunegrrl
    Tunegrrl Member Posts: 151

    Hi Willow, i'm also doing TC (+herceptin). I was offered a choice between TC and AC, but told that TC is easier on the heart and also considered to be more effective for the type of tumour i have. Also 4 rounds instead of 8 for the AC.

    I'm new here, too :)

    All the best

  • Willow77
    Willow77 Member Posts: 3

    Thanks DaraB!

    My girls are 13, 11 and 8. I was worried about telling them when I was diagnosed but I have been very matter of fact with them through the whole process and they are doing well. My oldest daughter immediately wanted to donate her hair to me when she found out I was going to do Chemo. She was disappointed when I explained it took a few donations just to make one wig. She is going to donate it anyway Smile

    I have been looking around this site and reading some others comments on other forums and must say I feel the knot in my stomach easing a little. It's nice to have people going through the same thing where all guards are down. My family is wonderful and so supportive but I always feel like I have to be strong for them.

    Kechla, I have seen cold capping and icing mentioned a few times. I will have to look into this further! It must be so reassuring to have your nurse, having gone through this as a positive example.

    UnwillingParticipant, I will have to look into that B6!

    Pickle Juice? Hmmm, DaraB this might end up being a staple at Chemo rooms across the globe


    Happy

  • Willow77
    Willow77 Member Posts: 3

    Hey Tunegrrl! Have you started yet?

    Sensitivehrt, that must have been so scary and stressful! I hope it is smoother sailing for you here on out!!
  • fireheart438
    fireheart438 Member Posts: 85

    adawn24 & AnnieTater - You're both starting today, right? Will be thinking of you and praying things go well. Any more news on the Neulasta front, adawn?


    Melpub - Welcome! I am so sorry you are dealing with all the weakness. I don't look forward to feeling tired or weak but remind myself that those symptoms will resolve when it's over.

    UnwillingParticipant - Your reason for sewing is the same reason I went back to work this week @ less than 4 wks post BMX. If I stayed home one more day and found myself shopping online for hats or reading anything related to BC I was going to explode. I had an appointment every day this week and being at work for at least a few hours gave me something other than myself to think about. Great idea for the redneck bidet. I bought some flushable wipes, but that idea is even better.

    DaraB - Glad you are doing well. Your Saturday plans sound like fun.


    Karey59 - I don't know your chemo regimen, but some of the drugs have blood thinning properties. I know Taxol does. One thing my MO reminded me is that the pharma companies will list all possible SEs. But all of our "chemical cocktails" are made specifically for our BC types and unique situations. So some of us may be more prone to one thing or another. I know I am having weekly blood draws and we'll be able to follow my blood counts very closely. So I'll know if my platelets are low and be able to take special care if my body reacts that way.

    Willow77 - You are welcome to ramble here. This is a judgement free zone. I felt like saying no and running away yesterday when the MO and I went over the consent form and I looked at all the possible negative outcomes of chemo. Stay strong. You've got this!

    For all of you icing your hands and feet, can you explain how that works? I read that neuropathy is often exacerbated by temperature extremes. Does anyone understand what the icing does to prevent the neuropathy? That is the one SE that I'm most anxious about. My first infusion is Friday, so I wouldn't be prepared to do it this week…but definitely want to research this more.

  • WenchLori
    WenchLori Member Posts: 1,027

    I've been trying to catch up with some household chores and got carried away!

    I'm going to spend most of today catching up with everyone here.

    I did see someone mention starting a new topic about Nulasta but I didn't see if anyone had done so? I just started a Nulasta topic, if someone has already started I will gladly delete mine and join yours :-)

    BBL

  • WenchLori
    WenchLori Member Posts: 1,027

    I'm trying to add a link but not working very well on my iPhone gggrrrrrr


    Topic: Nulasta

    Forum: Chemotherapy - Before, During, and After — Regimens, side effects, and support from others going through chemo.

  • UnwillingParticipant
    UnwillingParticipant Member Posts: 20

    Tunegrrl and anyone else on Herceptin or Herceptin and Perjeta - Have you seen the Genentech website (they make Herceptin and Perjeta) for those drugs?  They have more support for us.  There's an app for our phones/tablets, another support system, and more.  I believe they will send you a portfolio for keeping all the handouts we get.  I also got one without even asking from the American Cancer Society.  (My center is on top of that for me.) 

    Here are some links:

    http://www.herceptin.com/breast/herceptin  -  for information and signup.

    http://www.her2support.org/home  -  Support group.

    http://www.herceptin.com/breast/resources/4her-patient-support - the app for your phone or tablet.

    http://www.perjeta.com/  -  for information and signup.

    http://www.perjeta.com/neoadjuvant-her2-positive-breast-cancer-treatment  -  there are choices, depending on your regimen.  Choose from the menu on the left.

    Not content to just give me the TCH treatment, I will be getting my PHD - Perjeta, Herceptin, and Docetaxel.  I know I will be on Herceptin for a full year, and Perjeta for up to 40 weeks.  I think it is time to pick out a wig.  I guess I won't see hair for at least 15 months, and probably 18 months before I can go without a cap or wig. 

    My surgeon called me a couple of weeks ago after I had decided to not pursue any treatment at all.  He talked for 17 minutes straight, and I could not get a word in edgewise.  He kept saying that I am curable.  He would not stop until I agreed to go back.  He kept saying that they are curing those with my set of parameters.  They don't use the word "cure", in my experience as an RN for over 40 years.  All I could do was sit there and sob.   Evidently I qualified easily for Perjeta because of my particular parameters, as it is not generally available yet, and because they are part of a major university medical research department.  There's more information here:

    https://community.breastcancer.org/forum/80/topics/846661

    Why have neoadjuvant treatment?  My tumor is now 3.5 cm.  I'd have a lot of breast damage if I had surgery now.  It would probably require a quadrantectomy, which is taking 1/4 of the breast, or perhaps I'd lose half. The neoadjuvant treatment, my SO says, is shrinking tumors dramatically; he says by the time that therapy is finished, there is often no tumor to be found.  There is no necrotic (dead) tissue left behind; there is nothing left.  He will take our my sentinel node and 4 or 5 more unless they find cancer in those, in which case he will take 20-25.  I'm hoping that he won't have to open my breast at all, but just the area where the positive node is next to it. 

    Here's what I learned that is astonishing to me:  they do lymph node transplants there if people develop lymphedema. 





  • Kenzielulu
    Kenzielulu Member Posts: 9

    Greetings to all newcomers! I am 3 days in on AC infusion. I have two anti nausea meds to choose from: zofran or caraco. Both leave me drowsy and a little lightheaded, but I have not been sick so that's a good thing. It does affect my thoughts...went to the bathroom, needed to flush toilet, but instead turned off light switch...took me a sec to figure it out. I have slowed on taking the nausea meds, still taking but not every 6 hours, cause don't wanna feel stoned all the time. Will let y'all know if that's a mistake or not. I'm not even sure how long I'm supposed to take them before the next infuse...ill be asking MO on Monday. I will say my skin very dry. On a positive note, I am prone to acne even at 49, but it is drying them up. Wish I didn't have to go to this extreme for clear skin, but it is a positive😀

    I'm trying to follow everyone, but brain a lil scrambled to stay as organized as y'all. (Nausea meds, nausea meds...) is anyone having same effects with those meds?


    So, welcome to all new ones. I am AC infuse, with neulasta pod. I love reading y'all conversations, reminds me of normal life. Hang tough everyone!

    Hugs,


  • Tunegrrl
    Tunegrrl Member Posts: 151

    Awesome post, UnwillingParticipant. Thanks for sharing!!

  • djm71
    djm71 Member Posts: 16

    I'm on my 3rd day out and still doing ok. I'm having a good bit of nausea. They gave me zofran and compazine to alternate every 3 hours. That helps. Woke up at 2:30 this morning so wired from the steroids I guess. Fell back to sleep at 7:00 and just now woke up at 11:00. I feel like I could just keep on sleeping but I'm afraid I'll be up all night if I do. I've noticed a few minor taste changes. I tried to eat a yogurt and it tasted salty. My water is even tasting a little salty today. Weird.

    I'm surprised that I've gone 3 days without throwing up. I expected the worst. I'm wondering if the nausea will get worse as I get further into treatment? I guess I'll find out. No sign of my hair falling out yet. But as soon as it starts, my hubby is going to shave my head for me. I don't have a wig yet but I do have some hats.

    I didn't try the pickle juice because I've never liked pickles but I did chew some Extra Polar Ice gum and that seemed to do the trick as far as that taste of saline. I can't stand that taste! Once it's in your mouth it's hard to get rid of. For me anyway.

    Wishing all of you a good, SE free day! Good luck to everyone starting chemo today, you can do this! Big hugs to everyone!!!

  • adawn24
    adawn24 Member Posts: 5

    Hi all,

    Finishing off my first round of AC now. Found out this morning they're changing me from Zoloft to Effexor for my anxiety/depression. I've been on the Zoloft about 18 months after dealing with AD issues for as long as I can remember. I felt so lucky that it worked right out of the gate & I didn't have to try different things like so many people seemed to have to do. So I'm hoping the Effexor will also manage my AD. One more thing, I guess.

    I didn't really notice saline taste in my mouth. It does make my nose feel like I've snorted too much water while swimming. The nurse had me chew/suck on crushed ice while giving me the Adriomycin(sp?). She said that was the one well known for mouth sores & the ice in the mouth seemed to help prevent them (anecdotally).

    One more Neulasta update here and then I'll post on the dedicated thread with anything further. Still not getting it. They're not really pleased about that. Lowered my "ER worthy fever" to 100.0 and said go at the slightest indication of feeling poorly. The nurse said she's never seen the doctor as mad as he was on the phone during the peer to peer appeal with the insurance. They had to close patient doors he was yelling so much. She also said her aunt was beginning treatment soon and is not getting Neulasta per these new guidelines.

    Thanks for sharing the update, Unwilling Participant. It sounds like a reasonable path. And lymph node transplants? Never heard of that before.

    Thanks for the good wishes, fireheart438. Right back at you :)

    Here's hoping for minor side effects and improving conditions for everyone! Hugs!

  • Erdie
    Erdie Member Posts: 10

    Sorry I've been MIA. Just had my 2nd round of TC yesterday. Went smoother than first round (as far as the hospital logistics) I got there an hour later and home an hour earlier and no traffic during rush hour on the way home! Feeling ok today just tired. My neulasta shot is shipped to me so I will give it to myself tomorrow morning and then I'll probably feel pretty wiped out. My NP said that the rash I got days 5-8 was probably from Neulasta and might get worse this time. . .uggh. So praying that that doesn't happen. Will be sure to keep taking claritin.

    Cold Capping--still sticking with it. I've had quite a bit of shedding but have a good system and have the caps and am getting a great discount on dry ice. If you are considering it, tell the company what your are using it for and they will most likely give you a discount. I also found something to help with eyebrows and eyelashes (although ideally you're supposed to start before chemo)Brian Joseph's Lash & Brow Conditioning Gel

    And I'm buying a shampoo produced by Paxman (I have some british friends who are ordering it for me)http://shop.paxmanscalpcooling.com/

    Here's a pict of icing hands and feet and a popsicle for good measure.

    image

  • Erdie
    Erdie Member Posts: 10

    Also I was totally stressing about weight gain and permanent metabolic shifts and found this great cookbook (it was posted on another thread) everything looks delicious and healthy. I did a big shop before yesterday's chemo so I'll be ready.

    imagehttp://www.rebeccakatz.com/

  • UnwillingParticipant
    UnwillingParticipant Member Posts: 20

    I just got a call from my cancer center.  They got me in to see a head and neck surgeon about this bleeding lesion in my nose - first thing tomorrow morning.  Erdie, I saw that cookbook in the center's library, and will check it out some more.  Loved your picture!  I hope cold capping is a whiz-bang success!  I'll do icing on hands and feet, but if I'm on Herceptin for a year, I figure I'll just buy a wig and be done with it.  I moved to Florida to be warm, after all!



  • sensitivehrt
    sensitivehrt Member Posts: 310

    Doing well the first day after my first infusion. No extra nausea as of now. Only thing is some pain in my left big toe when I put to much pressure on i (possible neuropathy?).

    Great pic Erdie!

    Hope everyone else is well

  • cams
    cams Member Posts: 2

    Hi All!

    New to this. Had my treatment of epirubicin, cyclophosphamide (EC- European equivalent of AC). On day two post infusion and feeling ok so far. Night time nausea seems the worst. Trying to prop myself when sleeping. Any other hints

  • AnnieTater
    AnnieTater Member Posts: 57

    Hi everyone.

    I had my first round of AC today. It went okay. I ate frozen grapes during the red devil.

    Just a stressful day. My oncologist is worried about waiting for baby to come before beginning Taxol and my hemoglobin dropped dramatically in the last few weeks. I am going in for a blood transfusion tomorrow.

    I feel okay. Just tired and scared.

  • darab
    darab Member Posts: 894

    Love the picture Erdie!! And I also have that book and love it!

    Today was a bit of a yuck day as the bone pain from Neulasta set in. Earlier this morning, every single joint hurt. I did take the Claritin, so maybe it would have been worse without it. Doing a bit better this afternoon. I finally broke down and took a Norco since my MO said it was safer to take a narcotic than it was Advil! Still no nausea or diahrrea, etc., whatsoever. Had a mild headache but that finally left last night.

    Willow, I think Tunegrrl is correct, I now remember my MO saying that the TC has fewer SEs with heart etc. Your oldest daughter sounds just so very sweet and thoughtful. Especially given the age, for a teenage girl to offer to donate her hair says a great deal about her!

    ADawn, so very sorry about all the hassle with Neulasta. Have you investigated the other injection to boost white cells? I'm still dumbstruck that the neulasta is as costly as it is.

    Sensitivehrt, hope nothing else but your big toe hurts! I know throughout today, even my fingers hurt, but with a deep ache, not tingling etc.

    Unwilling, have you checked with insurance about a prescription for a wig? I bought one when I was first dx, but everyone says that frequently insurance will cover some of the cost. I guess it's called something like a "cranial prothesis." Lori, glad you're up to doing some chores! I did a few things yesterday and even started riding a stationary bike. I understand it helps to stay active.

    Hi to anyone else I missed. Fingers hurting so will end. <3 Dara

  • CassieCat
    CassieCat Member Posts: 863

    Hi all. I was where you're at now, two years ago. Just wanted to wish everyone the very best of luck. I've had clear scans for two years now and am hoping for a clear PET/CT next week. But so far, so good! Chemo is tough, but you get through it.

  • moderators
    moderators Posts: 8,637

    Chsvas2016-

    Welcome to BCO! You've come to the right place for support and advice as you continue your treatment. For some helpful tips on how to manage the nausea, check out these articles from our main site: http://www.breastcancer.org/treatment/planning/ask..., http://www.breastcancer.org/research-news/20121108....

    We hope this helps!

    The Mods

  • UnwillingParticipant
    UnwillingParticipant Member Posts: 20

    DaraB - thanks for the tip on wigs!  I won't need it though, because the most amazing happened today!  I live in an over 55 community and there was a community lunch today.  I was sitting with friends, and other friends of theirs joined us.  It turns out that my new acquaintance wears wigs all the time.  She lost all her hair due to Crohn's Disease.  After I got home, she and her husband came over and she handed me a box of 7 wigs, the head covers for underneath, and a whole bunch of cute hairbands, both elastic and solid!  I thought she meant for me to just borrow one, and I called her and told her I had one picked out and I'd return the rest this evening.  She said - NO!  Keep them as long as you want!  These are ones she doesn't wear anymore!  I am flabbergasted.  I almost didn't go to that luncheon, but I think there must be a reason that I needed to be there.  She gets hers on QVC.  I've never looked at that channel, so I'll have to find it.  If I can't buy something on Amazon, I don't look elsewhere, so I'll have to broaden my sphere. 

    I thought that I would only be on HP until my tumor shrinks, but after looking on another forum here, I see that all 4 - TCHP are given at once, plus there's the Neulasta, the steroids, and all the other stuff.  I will look like a drugstore before its over.

    Sensitivehrt - that was  scary, having a reaction!  I'm so glad it turned out well.

    I'm out of here at 6AM for the long drive.  I hope I'm back here tomorrow evening to check in on everyone.  Be safe; have a good day, ya'll.





  • Melpub
    Melpub Member Posts: 7

    Melpub here again. I am about to start 12 cycles of Paclitaxel. I've been told it will not be as debilitating as the four cycles I just had (at two week intervals) of epirubicin and cyclophosphamide.

    Exercise for me these days means taking a walk that used to be really easy--about a mile with some minimal hills--and feeling out of breath and out of sorts. Panting my way home.

    I'd like to hear from women who've experienced the same regiment--Paclitaxel--also from those who feel their tumors are the same size after chemo. The main doctor insists that the tumor he is watching is smaller. The other one, the one I found myself, seems the same size, but the doctors do not seem to think this is important.

  • fireheart438
    fireheart438 Member Posts: 85

    And so it begins...

    My bags are just about packed and I'm getting ready to hit the shower. I'm thankful to have been able to read all the posts here and prepare myself as best as I can. Early morning 6 mos checkup appt with my allergist, then down the road to my infusion. I have all my nausea meds, gingerale, saltines, etc next to the bed for when I get home. Feel like I'm as ready as I can be. Besides, there's no more time to prepare. Here it is.

    Unwilling - So happy to read your story about how you were gifted with those choices of wigs. Sweet! You can be a new woman each day. At least that may put a little fun in this for you. Let us know how things go with the head & neck surgeon. Will be praying for you.

    CassieCat - Thanks for sharing your story. It is good to hear from women who have been where we are.

    Erdie - That is a GREAT pic. Did you have help getting your foot gear prepped? Think I will order that cookbook.

    Welcome chsvas2016!

    AnnieTater - The prospect of a transfusion is overwhelming to me, and I haven't even had my first round of chemo yet. So I can barely begin to imagine what you are feeling. Hang in there. You are doing this for more than just you. And you will make it. I wish I had words to offer to take the stress away. Will definitely pray for you today.

    Thinking of all you ladies. We are in this together. We CAN do this!

  • mommichelle
    mommichelle Member Posts: 92

    Hello everyone! I just wanted to pop onto your thread and wish you all luck. I try to do this every August because I remember (although more distantly) all the feeling and worries you have. I started my chemo August 2010. I remember wishing I saw more posts from the people who had been through it awhile ago. I know everyone says that once people are finished with treatment and start getting on with their lives after cancer, this site becomes a memory. Sadly, that is true. There are too many wonderful things in life to do! These boards kept me sane and feeling in touch with people who knew exactly how I felt. Hang in there...it is a long road, but doable. Keep your eyes on the prize and lean on each other when you need support. I know where you all are, and it gets so much better. If you haven't already checked out the Success Stories thread, do so! Whenever I felt down, I would log on and read some posts from that thread. There are pages of them! Thinking of you and wishing you success! Hugs! Michelle

  • darab
    darab Member Posts: 894

    Boy, yesterday was pretty tough. I guess I had the reaction to the neulasta that I was warned about. Such deep bone aches that I just couldn't get away from. I resorted to pain pills, and finally was able to sleep last night. Still have a few little aches this morning, but hoping the worst of it is over.

    So, has anyone else's tongue gotten weird? My tongue looks really white, and feels like I burned it a little. It doesn't hurt and I'm sitting here having a cup of coffee with no problems. Just looks kind of gross. Hope to hear how everyone is faring today.

    MommieMichelle, it's always so good to hear from people who have gone through this and are happily on the other side!

    Bon Voyage Sensihrt! Have a GREAT trip!

  • fireheart438
    fireheart438 Member Posts: 85

    Dara - Just sitting here enjoying my chemical cocktail. Could your white tongue be thrush? I was warned that could be a possible side effect. I'd definitely report it to the doctor. Sorry you had a rough day yesterday. Hugs!

  • AnnieTater
    AnnieTater Member Posts: 57

    Thanks to cassiecat and mommichelle who have been through this before and are popping in with encouragement. It is so nice to hear your stories and know that there is an end to this rough patch.


    After my 1st round of chemo yesterday, I am at work and feeling pretty good today. Not too many side effects - mostly tired and a bit nauseous. Lab work this morning showed an increase in my hemoglobin, so no transfusion today. Whew.


    DaraB - I am so sorry about your pain. I hope today is better, too.

    fireheart - Good luck today! I was really scared yesterday, but today I am feeling more positive. Thinking of you!

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