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Starting chemo January 2018

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Comments

  • WorriedMe77
    WorriedMe77 Member Posts: 93
    edited January 2018

    I’m starting to stress out because my chemos been delayed due to scans and more scans I’m now on day 54 or 55 post Ob and still no chemo

  • WorriedMe77
    WorriedMe77 Member Posts: 93
    edited January 2018

    I have a appt with the lung dr tomorrow once he gives the all good on these lung nodules (I KNOW this too will turn out to be nothing more than spots) FAITH!!! Then my onc nurse said my MO will start my chemo treatment will stRt

  • WorriedMe77
    WorriedMe77 Member Posts: 93
    edited January 2018

    Okkate sending positive vibes and love your way!!! YOU GOT THIS 💪

  • Char105
    Char105 Member Posts: 28
    edited January 2018

    WorriedMe77. I actually didn't start chemo until 2 months after the lumpectomy surgery. I ended up having the port surgery on December 16th and my MO said he wanted to make sure I was healed from that surgery first. He said the cancer was removed with the lumpectomy so everything will be fine.. This is what I am holding on to and I hope it helps you not to worry.

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited January 2018

    Hi ladies- Just coming back up to the surface after a very rough weekend. First chemo/ AC was Thursday, and I had nausea right away. I tried to keep it down with what I was prescribed- Zofran and lorazepam- but neither worked. I ended up in the local ER (which is 4 blocks away and so friendly, my nurse was a gal that I had taught on an avalanche class), getting IV saline and Zofran. Ate some soup last night, then two meals already today.

    We will bring this up at our nadir meeting/ appointment on Thursday, since I cannot do that any more. It was debilitating. I did get a Neulasta injection on Friday afternoon, but wasn't taking any other meds.


    Freakin' brutal. Must persevere. Hold tight friends. We got this

  • Olesya
    Olesya Member Posts: 109
    edited January 2018

    Paisley, you look amazing!

  • Olesya
    Olesya Member Posts: 109
    edited January 2018

    Today is the first day post first chemo when i feel like a person again!(had my chemo last monday)

    Last night i ended up going to ER because back spasm became absolutely unbearable. they gave me muscle relaxant (cyclobenzaprine). it helped and i slept the whole night through till 9:30 am - a rare luxury when you have a 2 y.o. in the house hold( she is at relatives now).

    i also have very fine itchy rash down my neck. will be calling my oncologist with a bunch of questions.

    Stay strong, ladies! we got this!



    UPDATE: i spoke to my oncologist. they think that back spasms were probably caused by docetaxel (Taxotere). Neupogen can cause bone pain, but it was definitely muscle spasms, that have been resolved with a help of muscle realxant.

  • Amelia01
    Amelia01 Member Posts: 178
    edited January 2018

    Ok worriedme --- now I'm worrying massively! Had surgery on Nov 7, started chemo Jan 2. I'm going to call bs and say not true --- have to! All the drs want people to recover from surgery which is at least 30 days. I was given the option to start mid December ... right before xmas. Uh no. No one told me that I would be compromising my health. And besides, I was told I was cured with surgery! AIKKKKKSSSS


  • Deaelle
    Deaelle Member Posts: 43
    edited January 2018

    Hi there

    A late joiner to this group as I just had my first chemo on Friday, Jan 26 - Docetaxal. It has been great reading about everyone's experience here. I'm quite concerned about neuropathy, and iced my hands and feet during the treatment, but any other ideas to prevent this would be wonderful. I gave my self the Neulasta shot on Saturday night and the bone pain really kicked up last night. I've never had 'bone pain' so didn't quite know what to expect, but this is sure no fun! Also, a lot of abdominal pain and gripping. Anyone know if that is normal - perhaps a side effect of the docetaxal? Not sure, as this is all so new.

    Thanks! (and not sure why my profile data is not showing up, but I have ILC Stage 3a. ER/EP+, HER-. I had a unilateral mx Dec 6)


  • Roxy13
    Roxy13 Member Posts: 116
    edited January 2018

    Hi Deaelle, and welcome to the group! Good for you for self-administering the Neulasta! I couldn’t do it. I’m not afraid of the needle or anything, but I was worried that I wouldn’t do it right and waste $6,000 right there (canadian dollars, but still :)). Your profile may be set to private, that’s why it’s not showing your info. I personally like to see everyone’s data in the signature field. I can’t remember everyone’s infoand we have such a big group now!

    Regarding timing: I had my mx on November 24th and my first chemo Jan 12th. I have full faith in my doctors and am not concerned that it took longer than 30 days to start chemo. I think I recovered fairly well and quickly from my mastectomy, but I was in no position (physically and mentally) to start chemo any sooner. So I also call bs.

    @Paisley, you look great! The short hair makes those big blue eyes pop! This motivates me to make an appointment for my buzz cut. Of course, today is Monday and my hair salon is closed. Maybe tomorrow (you can tell I still don’t have the balls to do it :))

    Take care everyone and hope everyone’s pain and aches and nausea go away soon!

    XO



  • Olesya
    Olesya Member Posts: 109
    edited January 2018

    Deaelle - welcome to this wonderful group of wondrous fighters!:))

  • Deaelle
    Deaelle Member Posts: 43
    edited January 2018

    Thanks for the welcome Roxy13 and Oleysa. I am also in Canada, but Blue Cross coverage takes care of the Neulasta. My husband offered to give me the shot, but I wanted to do it myself. At the moment, I am having a pretty hard time with the pain, and with this being the first chemo, not sure what is caused by what exactly. I will get better at this I hope!

    My scalp is already itchy so I don't know if that means my hair will come out sooner than later. I'm planning to get a buzz cut in a week, and ease into this. Picked up a wig on Saturday. It all still feels a little surreal to me, but this pain is grounding me in the reality of this now, haha.

    I was able to fix the profile to public, but my chemo schedule still doesn't show for some reason. Docetaxel for the first 3 rounds, 21 day cycles, then epirubicin and cyclophosphamide for the last 3 cycles, which are also 3 weeks.


  • Roxy13
    Roxy13 Member Posts: 116
    edited January 2018

    I think there are a few Canadians in this forum :)

    My husband is with Blue Cross. I am with Great West Life and it also covers Neulasta. I still couldn't do it myself. They gave me the first shot at the hospital and I'll go to a community nurse for the rest.

    I'm trying to get used to my wig, but it feels so uncomfortable, plus it makes my head look so big, probably because I still have a lot of hair. Maybe it will get easier once I lose all my hair. I also got some cute beanies from Lululemon to wear around the house. I don't want my kids to see me bald.

    If it's snowing where you are like it is in Toronto right now, stay dry and stay warm!

    R

  • Insideout2
    Insideout2 Member Posts: 108
    edited January 2018

    Hello,

    I start my first round of chemo January 30, 2018. FAC for 6 cycles. I was diagnosed in December. I am going to take one moment at a time. I spent so much time thinking about all I need to do to prepare. I am too exhausted to think about tomorrow. It has helped reading the different experiences.

    I thought about the cold cap, but since treatment will span Tues-Fri I decided against it.

    Tomorrow is the beginning of my 2018 journey. Reading the posts have helped.

  • peachyjeanne
    peachyjeanne Member Posts: 155
    edited January 2018

    Amelia - the first ACT chemo was not for naught. The other area in my breast was HER2 Negative. I feel good knowing that chemo regimen cleared the node and did shrink the cancer in the breast. I can't look back so I'm holding on to the positives. It is food for thought for those that are getting chemo first, though. It's the pathology report after surgery that provides the true make-up and stage of the cancer, not the biopsy.

    MHerzberg I can't clear up the Taxol/hair loss question. I was already bald when I started Taxol. It did start to grow back kind of quickly and maybe even before the last dose.

    Paisley - you look awesome! The drug stores/Ulta stores are chock full of eyebrow stencils and fillers these days. I did not bother with false eyelashes. I am a spaz and knew I would glue my eyes shut if I tried. I just put a little extra eyeliner on and that was that.

    Abby It's a crime that in this day in age people anywhere cannot get medicine. ((hugs))

    Worried try not to stress over number of days. I know it's hard. Once we find it, we want to hurry and get this stuff done, but the doctors do need to check your scans and vitals so they have the full picture. Hang in there.

    Okkate it does get a little easier each time. You find your rhythm and what works and what doesn't.

  • WorriedMe77
    WorriedMe77 Member Posts: 93
    edited January 2018

    So I called the cancer center today and takes to my onc nurse and told her what I was concerned about...Since I’m on day 50 something is worried 😟 She told me 1.STAY OFF OFF GOOGLE

    and two everyone’s situation is different and that my MO doesn’t think starting a few days after the 60 days will affect my outcome...I’m sorry if I posted that and made anyone worry that was not my jntebtikn

  • Olesya
    Olesya Member Posts: 109
    edited January 2018

    oh no! mouth sores are here!

  • Deaelle
    Deaelle Member Posts: 43
    edited January 2018

    Oleysa - How many days out from chemo did the mouth sores appear? I keep waiting for that. So far, okay though. I'm using Biotene mouthwash and also rinsing with soda water after food at the moment. Have you tried that?

    Insideout2 - Good luck today. I ran around like a crazy person the week before my first chemo (the 26th). It was like I was going on a big trip, and had all this stuff I had to do before I left. A trip to hell, haha. It was a way of distracting myself about what was coming, and also just simply trying to 'be ready' and have things on hand that might help me. I had seriously committed to trying rhe cold cap too, but at the last minute cancelled it. It would be too overwhelming I realized to handle bringing in the machine, with all the startup stuff too, and then also icing my hands and feet (to minimize neuropathy, which is likely with Docetaxal, my drug for the first 3 cycles)

    Roxy13 - I agree, the wig thing is weird, but I also don't relish my kids seeing me bald, even though my youngest is 21. Feels so naked somehow. Maybe I will get over this as I get used to it. I picked up some soft hats too, but I've never been a hat person so that feels odd too. Sigh! And I am in Calgary, btw.


  • Insideout2
    Insideout2 Member Posts: 108
    edited January 2018

    Hello Everyone,

    I am in the middle of my first session 1:47pm. I was ready to get started this morning. My aunt and sister thought I would drag to prepare for 9:30am appt. Surprised them.

    Daelle - I agree there is enough to do already. I didn't bring ice for my hands or feet. I did take time to my own medi and pedi. Wishing you the best on your sessions.

    My Day 1 is long due to the prep and premeds as most mentioned. The saline flush wasn't bad. Getting the needle inserted for first time wasn't pleasurable. The area was cold sprayed first and did help, however a dull ache was felt for thirty minutes. I have 3 more days left on my first round of six sessions and am happy I got the port. Since I this is my first round I will come in everyday. I get to carry a Fannie pack day 1-3 of my four day session. If only they were in style and I was younger. I not a fashion expert, but I am going to find a way to make it work.

    Cytoxan done, 5-fu in progress, and Adriamycin to go via Fannie pack.


  • TeriAnne
    TeriAnne Member Posts: 6
    edited January 2018

    2nd chemo over, much easier than the first one, knowing what to expect helped a lot . Getting hair buzzed on Friday hairdresser coming to the house. Shedding like crazy. It’s very emotional for me but what choice do I have.. 2 down 4 to go!

  • Roxy13
    Roxy13 Member Posts: 116
    edited January 2018

    My second chemo is on Thursday. Met with my MO today. He said that he expects that the only SE that may get worse is the fatigue, which is cumulative. Oh well. It could be worse, I guess.

    I’m getting my buzz cut tomorrow. I should have done this earlier!!! My hair is coming out in thick strands now. It’s gross and I’m worried I’ll clog the drains. Why oh why did I wait...


  • WorriedMe77
    WorriedMe77 Member Posts: 93
    edited January 2018

    Went to theung doctor today, was told the nodules are too small to worry about now but he will follow me over the next two years to make sure they don’t get bigger.... They also found a enlarged lymph node in my lung sooooo next week I have to have a lung biopsy which means my chemo will once again be delayed 😳☹️🤬 Guess if it’s not one thing it’s another my new normal and I hate it!!!! Hope everyone is taking care of them selfs and getting the love and support you deserve.Sisters from another mister y’all are in my thoughts and prayers

  • Olesya
    Olesya Member Posts: 109
    edited January 2018

    Deaelle - a week from my first chemo(had chemo on Monday, sores showed up the following Monday). I rinse with Biotene as well, and with soda/salt mix too. I didn't do it religiously after every meal, though. but i kept flossing and still able to do it - no bleeding.


    My hair is holding on still.


    got a hydrocortisone creme prescribed for my chemo acne(its out of control!), hopefully it helps, because i look like an overly hormonal 15 year old in my 34:)) on another hand i keep thinking: my liver is hard at work detoxifying my body:)))


    another interesting thought: because i didn't feel bad during the infusion, i don't associate all these terrible side effects with the chemotherapy. I think of chemo as a healing magic fluid that will heal me:))


    someone enlighten me: what do NADIR and MO stand for?

  • WorriedMe77
    WorriedMe77 Member Posts: 93
    edited January 2018

    Guess I will be in the Starting chemo February 2018 group too

  • faith323
    faith323 Member Posts: 5
    edited January 2018

    Hi All

    Roxy13 : I too am thinking of just letting my hair fall out and not buzz it. I feel like the only one. I have my 2 nd treatment tomorrow 1/31 TCHP. My hair has started falling out but not in clumps yet I might change my mind once that happens.

    My question about that is do you use a 3/4 setting or the lowest to buzz my hair if I go that route? I heard different things.

  • Roxy13
    Roxy13 Member Posts: 116
    edited January 2018

    Hi @faithandhope323, I was also going to let my hair fall out, but it became too much of a nuisance. My scalp is fairly itchy now, and every time I scratch I get a big clump between my fingers. Then I have to find a garbage can, so I don’t leave all this hair behind me. It’s in the sink, on my sweaters, and the showers are a nightmare. I have to constantly pick hair from the drain, then it gets stuck to my wet fingers. I wear a wide silk hairband most of the time, to keep things in check. Still... I also saw some people at the cancer centre that probably also decided not to buzz, and didn’t like the look. It looked like they had grass growing in the mud on their heads (bald patches everywhere), like my husband would say :)

    I went to one of those “Look Good Feel Better” workshops at my cancer centre and they told us to buzz it (if we do decide to buzz it) at #1, not the lowest setting, so we don’t get cuts. I think many hair salons do it for free for cancer patients. Like I said, I’m going tomorrow but I’m dreading, dreadin the stares. Oh well, I’ll just glare at them :) I’m also hoping my stylist will trim my wig, because it doesn’t have a stylish cut. I just don’t trust the ladies at the wig salon to do it. That place looked like it never left the 50s...

    Let me know what you decide. And best of luck tomorrow!!!

  • Roxy13
    Roxy13 Member Posts: 116
    edited January 2018

    Olesya, MO stands for medical oncologist (at least that's what I've been using it for) and Nadir, in cancer parlance, is the day of the lowest blood count.

    Hope the hydrocortisone cream helps. I am also breaking out a little, and I feel like I'm getting more wrinkles since I started the chemo! (I'm 47). I just bought a couple of new facial oils today. I'm a bit of a cosmetics junkie, so this part of the process doesn't bother me too much. A new reason to buy new products. :

    XO

  • BeyondBlessed
    BeyondBlessed Member Posts: 4
    edited January 2018

    Hello! I started TCHP January 26. Having gotten the port on January 24, I’m still trying to find a way to sleep comfortably. My appetite is pretty much nonexistent, eat because I have to. I have noticed pains coming and sometimes intense before fading to nothing and I assume is from the Neulasta.

    I am just trying to take one day at a time. I find that even if I just browse through here, I am connecting with others and I find some comfort just hate the circumstances. But I am learning “we got this”!

    Stay strong my fellow warriors!!!

  • krose53
    krose53 Member Posts: 74
    edited January 2018

    Hi, I had my first TC chemo treatment on the 22nd. The session went well. I did pretty good days 1-5. Started Neurlasta self injections without an issue. I have an added bonus, in that I have Addison’s disease. You may have heard of it. It a rare autoimmune disease that causes my adrenal glands to be completely non functional. I produce no cortisol on my own. I replace it everyday with 20-30mg hydrocortisone a day. My Endo said I’d do “just fine” during chemo. No advice , no guidelines, no idea when to increase meds. Things really feel apart days 6 and 7. I had no idea what was expected from chemo versus low cortisol. Luckily I had an injection kit for emergencies and injected and by Monday am was feeling so much better. Wondering if anyone on TC chemo could tell me some symptoms you had and what days were the worst. Tips? Any info would be so appreciated! Thank you. This a a great group. Invaluable

  • krose53
    krose53 Member Posts: 74
    edited January 2018

    Hang in there, Worriedme77. You are going through some tough times. I’m thinking of you often and sending healing thought to you everyday.

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