Starting Chemo in September 2017

1…1213151718…33

Comments

  • toughcookie_21
    toughcookie_21 Member Posts: 185
    edited September 2017

    mkn, I got my period on the day after my first chemo. 22 days ago.I've had it ever since. Some days it's super light and others heavy and crampy. I mentioned it to my mo and he said it would go away. I hope soon as this is a pain, albeit a small one in the grand scheme of things but a pain nonetheless.

    · Share on FacebookShare on Twitter
  • OCDAmy
    OCDAmy Member Posts: 873
    edited September 2017

    Happy that I finally get to go home from the hospital today on oral antibiotics for two weeks. I'm hoping I can still get chemo while I'm on antibiotics?

    Just a reminder to everyone if you feel anything out of the ordinary or have a fever, call your MO! This was a UTI that spread to bloodstream. One thing I can say I appreciated was having the port for the IV antibiotics although they accessed it twice and I didn't have lidocaine on it. Ouch.

    Take care everyone. Glad to see we are all moving forward and fighting hard.

    · Share on FacebookShare on Twitter
  • rljes
    rljes Member Posts: 547
    edited September 2017

    Thank you to all that is posting their daily SE and what you are doing to counteract. (or No SE - gives hope)  I will start Chemo next month and appreciate the advise - Very Much.  

    · Share on FacebookShare on Twitter
  • travelhound
    travelhound Member Posts: 67
    edited September 2017

    TinaMarie. glad it went well. I have been getting cold easily since starting. Heat bills going up!

    One thing I wish I had added from the start is an acid reducer for the stomach, like Zantac, or Cimetadine. My esophagus got very tender with the AC and it started a week after my first dose, when I swallowed a broken calcium pill that scratched my esophagus. I was also using alot a maalox for that esophagus. It got so I was having trouble swallowing and the maalox helped.

    · Share on FacebookShare on Twitter
  • Binniebin
    Binniebin Member Posts: 87
    edited September 2017

    hi everyone,

    I don't start chemo until 20 oct but really apppreciate your experiences and what you've tried. I'm a chemo nurse so have some knowledge but no personal experience. My oncologist was fantastic and said don't sit at home feeling sick just ring up the clinic or hospital and get in and get a bag of fluids and Iv anti nausea drugs. I know this really helps as we do it often, usually by 500 mls and (usually) zofran it's much better. I also have an acupuncturists number as few pts really responded. Dry skin try one for really dry skin and use I it a few times a day.

    I'm probably in for neulista having lowish neutrophils pre chemo. Does the plain claratine cause heart to race? I have heart issues so need to be very careful.

    I so hope you have all had great support from friends, family and colleagues. Everyone Ive told has said thanks for telling me, why are they thanking me, I'm thanking me for their love and support. I'm not one to cry , but have had 3 years worth in 6 weeks!!!

    · Share on FacebookShare on Twitter
  • Meg101
    Meg101 Member Posts: 175
    edited September 2017

    Hi rljessu - I agree, this is a great group. The advice, tips, and explanations have helped so much. I'm on day 11 after the first infusion, and I'm starting to feel normal again. My eyes burn for some reason, but it's probably not related to chemo.

    OCD - How scary to develop a UTI after chemo. This tells me we all need to be aware of how susceptible we are to bacterial infections. I'm glad you're feeling better. Hopefully you'll be able to stay on the same chemo schedule. Regarding human hair wigs vs synthetic... I prefer the synthetic wigs because they are wash and wear. I washed mine before I wore it, and it took the shine out. I also watched YouTube videos that addressed the shine issue. The videos are very helpful. Human hair wigs require high maintenance like blow drying, curling, etc. They end up looking more "wiggy" than synthetic wigs.

    travelhound - I hear you about the heartburn. I rarely have acid problems, but on day 3 it hit like a lump in my esophagus. I took Pepcid AC and the problem went away.

    PauletteK - Where does one find Smooth Move? Is it found at a regular grocery store, or is it a healthfood store item?

    Here's wishing everyone a healthy weekend !!



    · Share on FacebookShare on Twitter
  • ewu
    ewu Member Posts: 48
    edited September 2017

    Finally feel normal again today. It's so strange. The first several days after the treatment were not too bad, then suddenly a few very bad days coming. This morning, also suddenly, I feel ok again. Does everyone on AC have the same experiences? Does this mean the drugs wear off and not working any more?

    Meg - I get the smooth move tea at target.

    · Share on FacebookShare on Twitter
  • _ipcoder17
    _ipcoder17 Member Posts: 7
    edited September 2017

    My nausea was minimal until last night. It started with a migraine type headache. I'm trying to keep in front of it worsening. My port started really aching, so I'm using icepacks.

    I was so nervous the morning of my first infusion. My blood pressure was very high, but came down after the nurse made me feel more comfortable throughout the session.

    I know this is happening, but I just feel like I'm outside my body looking at someone going through this. This is not me. I want my Mama. I miss her so terribly now. She's been gone since 2008. I know she would be so worried if she were here.

    I know I have to stay focused, patient and postive! Thank you all for letting me know I'm not alone. Sending prayers up for you and family!

    · Share on FacebookShare on Twitter
  • Wonderwoman386
    Wonderwoman386 Member Posts: 48
    edited September 2017

    I start DD AC oct. 4, I just had my tour of the chemo land and chemo school last night.

    Ipcoder17- I know how you feel, on the outside looking in, I still think sometimes even after having surgery first that someone is going to say “sorry we messed up your test results you're fiiinnneee!"

    I Have this transient fear, somedays worse than others that this beast could actually kill me. I'm having a hard time with the day to day, I look too far into the future and am already getting worried about reoccurrence. One member of this site told me “80% if kicking BCs ass is just showing up"

    Anyone else get excited to start chemo? I mean I feel like I'm actually DOING something to fight this beast now, not just sitting around and and waiting for the fight to start.

    I've been following your SEs, are you noticing they build and get worse with each dose or are they the same each time

    · Share on FacebookShare on Twitter
  • Cashasmom
    Cashasmom Member Posts: 8
    edited September 2017

    Wonderwomen I feel Exactly the same way, are you reading my mind? Got my port yesterday, they told me the pain would be minimal....they were wrong.. it really hurts! I lay in bed worrying that every ache and pain is a new tumor growing. I start chemo on Oct 5. I wonder how I am going to make it through this. It really does feel surreal, like this Cannot really be happening to me. I am always the healthy one

    · Share on FacebookShare on Twitter
  • tina_marie
    tina_marie Member Posts: 88
    edited September 2017

    Toughcookie and mkn ... that's funny because I was thinking the same thing..i got my period 2 days before my 1st infusion, usually i'm done by now and it's just continuing consistently every day... i hope this isn't going to last.

    So far, today is day 3... i'm achy and fog headed.. but really not bad... I was imagining much worse for me.. I feel like i'm waiting for a bomb to drop. I'll keep you all posted.

    · Share on FacebookShare on Twitter
  • Wonderwoman386
    Wonderwoman386 Member Posts: 48
    edited September 2017

    cashasmom- that’s why I love this site, I swear a lot of the posts I read I can finally say “yes! I’m not alone!!”

    I start oct. 4th, giddy up.

    · Share on FacebookShare on Twitter
  • PauletteK
    PauletteK Member Posts: 2,205
    edited September 2017

    Milkwee- what insurance company do you have?? That is ridiculous why would they want to put your health risk!! Take care ... hugs once your WBC up you will feel better. How's your RBC?

    Tina - I found myself need to wear more layers now so glad you don't have much SE.

    New England - it will be helpful to know what chemo are you getting could you please put that on public?

    · Share on FacebookShare on Twitter
  • MzPriss
    MzPriss Member Posts: 38
    edited September 2017

    I've just been lurking mostly this week. S/E have kept me laying low.

    Amy! I'm glad they have cut you loose from the hospital! I had a UTI my first round, caught it quick, thankfully.

    This second round was no joke, I had hoped that now that I was at a new treatment center, with supplements to support my health, that things would have gone better. But nope. The nausea has actually been worse, and the big D hit right at the same time as last time, but not as frequent, so maybe the probiotics are helping there? I've got a constant bloody nose now....gross.

    I was supposed to go back to work Monday, but have rethought that. I'm having a bit of a crisis of conscience. Last cycle I was down for almost a solid 2 weeks with fatigue and D. The one good week, I was pretty slow, but probably could have worked from home. Going off of that cycle, I could be off 2 and work 1, which would completely mess up my short term disability, pretty much make me ineligible. It requires I be off for 2 weeks before it pays out, and on my current cycle of ups and downs, it would make it so it just didn't pay out at all, meaning I would be without pay for 2 of 3 weeks until this is over. I don't think I can do that. So, I've asked for my leave to be extended. I am really missing work and my co-workers. Two of my closest co-workers sat with me a few hours last week during infusion. These people are like my family, so it's just been hard.

    I am signed up to do a local BC walk tomorrow. I have had a lot of support in that. I've also kept up my morning 3 mile walk routines as much as possible.

    I'm ready for this season of suck to be over....uggh. I'm usually so busy and I like to keep moving, the chemo has decided I lay low way more than I am comfortable with!

    · Share on FacebookShare on Twitter
  • Milkweed93
    Milkweed93 Member Posts: 41
    edited October 2017

    Amy - Glad you are home finally! UTI's suck and I'm prone to them so I'm always on the lookout.

    MzPriss - Way to go keeping up your walks! It's been a struggle for me this round for some reason, and today we have fires nearby so I can't go out to walk. I'm leery of the gym - germs and all.

    Paulette - I have Anthem Blue Cross. I hate to bash them, because I have been with them for so long and they have usually been good (although I pay through the nose for it). They did finally relent and I will get my WBC booster the next two rounds. My RBC's have been good though. I will get another blood test on Monday to see if the 3 shots of Zarxio helped this past week.

    Meg - my eyes have been watering more since I started treatments. I get a rim of redness under my eyes from it. I think it is a symptom of dry eye, but maybe it is brought on by chemo? I've taken to putting vaseline very lightly under my lower lids at night careful not to get in eyes. Hoping that helps some. I never liked vaseline before (petrochemicals yuk!), but it is the only thing that helps with my severely dry feet, nose, and lips.

    I'm still chasing the mouth sores and receding gums: here is my regimen and if anyone has any thoughts on any other ways, I will try it! I wake up and swish coconut oil for 15 mins, brush with an ultra soft toothbrush and rinse with salt/baking soda water, sometimes hydrogen peroxide water. I brush after almost all meals and snacks, or if I can't brush, rinse with water well until I can get home. At night, after I'm done eating I brush, floss carefully, rinse with hyd. perox water. Right before bed I swish with biotene, and if I get up at night to pee, I swish again. I'm beginning to wonder if there isn't something internally I should do. I don't have gastro problems like reflux or heartburn, just the usual nausea the first week or 10 days. I love nuts for fast protein, maybe they are causing the sores? They aren't huge sores just niggling little ones that keep popping up here and there. And why are my gums receding more? Anyway, I'm grateful it isn't worse than it is, but at the same time I'm wondering what shape my gums are going to be in when this is all over!

    Hello to all the newer people and lurkers! I'm grateful every day for this group!

    · Share on FacebookShare on Twitter
  • toughcookie_21
    toughcookie_21 Member Posts: 185
    edited September 2017

    milkweed, I use coconut oil too for the mouth sores. I also started using kefir (it's like strong yogurt)just leaving it in my mouth for a few minutes. It cools things off for those awful mouth sores!

    · Share on FacebookShare on Twitter
  • ItsStillMe
    ItsStillMe Member Posts: 61
    edited September 2017

    Glad to hear it went well. I will be having my port placed on Oct 20, and was told to arrive 2 hours (6:00 am)prior to theprocedure. How long did it take, from when you got to the hospital to when you arrived home?

    · Share on FacebookShare on Twitter
  • OCDAmy
    OCDAmy Member Posts: 873
    edited September 2017

    MzPriss - I'm sorry this time has been has been harder for you. The season of suck is right!

    Welcome to all of our new members, glad we are going through this together. I found the port to be painful for about 3 days and then it quickly felt much better and I only notice it now if I bump it. For me it was a fairly quick procedure. I think from the time they started to finish it was maybe 40 minutes. It is a weird sensation to have conscious sedation, I have anxiety so of course I was anxious of course, but it was fine.

    I have had thrush after each chemo and was prescribed nystatin. It seems to also help with mouth sores as that as not been a big problem for me.

    I am feeling so much better and glad to be home. Still tired but trying to take it easy and missing several fun things I had planned this weekend. I talked to my nurse coordinator and she said no problem with taking an antibiotic and taking my next chemo on Friday. I told her I was relieved, she said..Nobody wants to get chemo but nobody wants to miss chemo. Ain't that the truth. So I should be good to go with #3 and will be much more careful this round to notice the first signs of possible infection and jump on it.

    Good luck to everyone starting this week.

    · Share on FacebookShare on Twitter
  • Cashasmom
    Cashasmom Member Posts: 8
    edited September 2017

    Hi ItsStillme, we arrived around 1:30pm, had bloodwork, into procedure room around 2:30. I was nervous but honestly between the sedation and the lidocaine it wasn't so bad. I did feel pain starting last evening, so definitely keep up with the Tylenol/Ibuprofen. Woke up in pain around 2am... yowch! Today laying low and keeping up with the meds. Tomorrow should be better. Can't shower until Monday though, ugh. We were out of the hospital by about 4pm

    · Share on FacebookShare on Twitter
  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited September 2017

    ugh I still feel terrible and can’t stay awake very long. This is day 4.

    My next cycle I’m supposed to take my daughter to a concert we’ve been planning all year. I do not think that day 4 next cycle is going to be any better. Has anyone been able to skip a week? My dr wants to be in office on the day of treatment but it would be so nice if I could do it the day after the concert.

    Has Anyone else been able to move their treatment day around? Is it possible

    · Share on FacebookShare on Twitter
  • Wonderwoman386
    Wonderwoman386 Member Posts: 48
    edited October 2017

    my port was done under anesthesia. No conscious sedation here, my doc wanted to keep me as comfortable as possible, and I’m a nervous nelly!

    I arrived at the hospital at 11:30, port placement was scheduled for 1pm, saw doc, anesthesia, got my IV, all consents signed, and didn’t get into the OR until 2:30pm( I guess the OR team was having a hard/busy day and running behind) I was not fully intubated, they used something called an LMA which is a tube that sits above the vocal cords, I was given some goood sleepy time meds, woke up like a champ 90 minutes after the start, ate some toast, drank some water, and my husband wheeled me out by 4:45pm

    I’m 2 days out and my port site aches, sometimes burns a little. Ice helps and so does Tylenol.

    I think I have a more traditional access site, I have a 1.5inch incision with steristrips and that’s it. I think it sits in my subclavian vein below my collar bone. I’ve read that some of your ports were placed through the neck? And with conscious sedation? My doc said he just prefers it this way, and that it has the same healing time. Do you ladies agree?

    · Share on FacebookShare on Twitter
  • toughcookie_21
    toughcookie_21 Member Posts: 185
    edited October 2017

    mojo, I had my first chemo on a Friday and then my second on 19 days later on Wednesday because fhe mo was going to be out of the country on day 21. And I've heard from others that chemo can be moved one or two days to accommodate for the patient or the doctor's needs.


    I am now 3 days out from TCH #2. The diarrhea came back with a vengeance, I'm assuming it's just going to be how my body gets this crap out of me (pun intended). The mouth sores aren't as bad this time (yet) and I haven't had the bone pain I expected from Neulasta, but I'm taking Claritin and Aleve. My body feels achy like I'm getting a cold and I just don't have any energy. I go back to work on Monday so I hope tomorrow makes a huge difference in my level of comfort and motivation.
    · Share on FacebookShare on Twitter
  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited October 2017

    toughcookie, I’m on a bi weekly schedule. I think I’d end up about 4 days past that two week mark.

    But if i had it early... did you find side effects any worse doing it a couple days early?

    I’ll be honest, I’m super freaked out to feel as sick as I did the day of my first infusion. I don’t ever want to feel that sick again in my life.

    · Share on FacebookShare on Twitter
  • toughcookie_21
    toughcookie_21 Member Posts: 185
    edited October 2017

    mojo, having the second chemo sooner didn't make the side effects worse for me. I hope you can get something to help with the first day.
    · Share on FacebookShare on Twitter
  • hopebringscourage
    hopebringscourage Member Posts: 37
    edited October 2017

    Mojo-I agree I am absolutely dreading my 2nd chemo-I was so sick day 2 through like 10. I have had like 4 good very normal feeling days. On day 14 exactly almost to the hour my hair has begun to shed😓

    Keep pushing forward though...right?

    · Share on FacebookShare on Twitter
  • Meg101
    Meg101 Member Posts: 175
    edited October 2017

    Hope - My hair started falling out today too. I'm on day 13 past my first infusion. I thought the hair loss would start after the 2nd round of chemo, but so be it.

    · Share on FacebookShare on Twitter
  • Icedgem
    Icedgem Member Posts: 15
    edited October 2017

    I have also been laying low the last week or so, having a rough time with round 2 side effects. I was only down for about 5 days for round 1, but no2 has kept me down for almost 2 weeks. The side effects for me have been totally different this time. The main problems being verify bad headaches, which no pain killer can get close to helping. I could hardly walk across the room and felt like my head was going to explode. Also extremely sore throat where I actually lost my voice last weekend. My husband said at least he couldn't hear me complain about the headaches for a few days!.

    I saw my MO on Friday who says I have mucositis of the throat. I have been routinely rinsing my mouth with salt & baking soda which has helped keep my mouth sore free, but instead it has gone to my throat. The headaches are a comcern and if I get them again after round 3, then I will need to do a head scan.

    Upon examination, my MO could no longer feel my lump, so the neoadjuvent treatment seems to be shrinking the tumour - Good news. However, I now have a inflammed lymph node under my arm - Bad news. I was told at diagnosis that they did not suspect any lymph node involvement, but now I am worried that could be wrong. Is it possible to have an inflammed lymph node and not have cancer in it when you have cancer in your breast?. I am driving myself crazy with this, and thinking that it has got into the lymph nodes and spread to my brain- hence the headaches. My MO says I shouldn't be too concerned for now and to see what happens after round 3 which is on Tuesday. Also my blood work this week showed that my Liver is having a hard time with very high Alt & Ast readings. The taxotere has to be reduced by 20% this round to get my liver to recover.

    I am sorry to blurb on, having a really rough time dealing with this right now. I can't believe the stuff we have to go through for this illness. It is so surreal. Anyway, I hope everyone out there is ok and I'm sending you all hugs.



    · Share on FacebookShare on Twitter
  • hopebringscourage
    hopebringscourage Member Posts: 37
    edited October 2017

    Icedgem-I would discuss your concerns with your MO. I'm so sorry you are having such a rough time. Anxiety over everything is debilitating. I am keeping you in my thoughts and good luck Tuesday! Hope you start feeling better.

    Meg101- I've been shedding all weekend...I don't have the heart or courage to shave it. It's really thinned out. It's so emotionally draining.

    · Share on FacebookShare on Twitter
  • _ipcoder17
    _ipcoder17 Member Posts: 7
    edited October 2017

    Sending prayers up for you and family as we make this journey to become well.

    I still want to scream at the top of my lungs for this to stop, but that would take to much energy and wipe me out! LOL

    I appreciate all of you so! If we could all meet for coffee, we'd turn the coffee shop out! 🤣😂

    · Share on FacebookShare on Twitter
  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited October 2017

    Yesterday I felt decent. Aside from feeling like my bones were broken or growing. But I still have what I would call morning sickness. It really feels like when I was pregnant. It fades when my zofran kicks in. At least the last two days it has.

    I'm curious about the tumor shrinking I've read some of you mention. My Breast is still the same. Should it really be shrinking already?

    Icedgem: I also have a couple newly swollen nodes in my armpit. I chalked it up to my immune system kicking up from the neulasta. But I made that up on my own

    · Share on FacebookShare on Twitter

Categories