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Starting Chemo in November 2017

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Comments

  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    Hang in there shaneswife - you are young and your body will fight this better than some of us oldies! I’m scared too as many are facing chemo that didn’t think we would need it. You would think that because our lymph nodes were negative that chemo would not be necessary, but I know with you the triple negative is a bad point. It sounds like the nausea can be controlled for most. It’s just a big temporary inconvenience

  • shaneswife828
    shaneswife828 Member Posts: 33
    edited November 2017

    I am hoping that chemo takes it easy on all of us. Taxol makes me more nervous than the A/C because I already have enough lung and bone problems. I have 6 kids little ones that need me. Hopefully we all beat this and it never returns.

  • rljes
    rljes Member Posts: 499
    edited November 2017

    Hi Orange Daisy- I too live alone, making everything more difficult.  (I'm 59 yrs old) I have delayed Chemo - Over 3 months Post surgery because I'm so stressed and feel I'm not healing as should from dbl Mastectomy (no reconstruction - going flat) 
    Have committed to starting Chemo Nov 28th.

    You might visit "Starting Chemo in August"  Very informative, sharing group - (that drops in here to help us out. THX!)  If you have time (and energy) please share your journey with us.  

    Welcome ShanesWife - I hear you!  I am terrified of having port placement Tuesday (Nov 14th)  Hopefully we all can share our treatments, and SE's - help each other get thru this.  

    Hoping everyone is well.  

  • frozentoes
    frozentoes Member Posts: 48
    edited November 2017

    The port has been installed! I feel sore and tired but that's normal. The doc ended up putting it in on the left since the cancer is in my right breast and there is a supraclaviclur lymph node involved. Thought it might get in the way of future treatments if it was put in on the right. It's just a bit weird since I had been getting myself used to the idea of it being on the right. Next step is chemo. T-minus 6 days!

  • Aymerz33
    Aymerz33 Member Posts: 41
    edited November 2017

    Hey all!

    Had my first infusion on Monday, and I am so grateful that I am not feeling awful. So far, the only SE that I have really noticed is fatigue. I have been napping a lot, and thankfully I can telecommute so I can work when I have the energy to do so.

    I started taking my zofran RIGHT AWAY the next day after infusion. Someone in this thread suggested that all bodies are different, and honestly, they didn't really tell me *when* to get started taking it, so I just did it on Tuesday. I have all my meds alarms set to remind me when to do my shots, and when to wake up for meds in the middle of the night. So grateful that the SE's seem to be mild - so far. Not really sure what to expect in the days to come.

    I'm so glad that this group is here to read and write to! This has kept my spirits up! Hope things are going well for everyone who is set to start in the upcoming week.

  • Erikag726
    Erikag726 Member Posts: 10
    edited November 2017

    I had round one of TC on Monday the 6th. I felt great yesterday and most of today. I seemed to hit a wall of exhaustion today at about 5 pm. Luckily we have left overs to heat up for my girls tonight. I have taken a few Zofran pills today, anytime nausea started to set in. I will take Atavin tonight before bed.

    I wish I took the time to have my eyebrows microbladed before my first treatment on Monday.

    I feel very edgy and irritable tonight and that makes it hard to be pleasant around my family.

    My MO recommends four to six rounds of TC, each round every 3 weeks. Trying to just get injection each cycle and not get a port, since not a lot of cycles needed.

    Good luck to everyone this week, and fingers crossed of limited side effects.

  • Aymerz33
    Aymerz33 Member Posts: 41
    edited November 2017

    Erikag726:

    We are Chemo buddies! I started on Monday too!

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited November 2017

    suggestion for those who haven't had your port placed yet. Make sure you know where your bra strap would be and see if port can be placed anywhere except under the imaginary bra strap.

  • shaneswife828
    shaneswife828 Member Posts: 33
    edited November 2017

    For those who haven't had port placement yet and would rather not have one in your chest....ask your Oncologist about having one pit in your arm. I am having mine there so I don't have more scars on my chest. My plastic surgeon was super happy with the placement since he said they get in the way of doing his work.


  • Kiwi49
    Kiwi49 Member Posts: 1
    edited November 2017

    Post #1 - I am so thankful to have breast cancer in this day and age - I couldn't imagine NOT having a place as wonderful as this, filled with lots of strong, brave, beautiful women to share their stories, fears, and advice so openly with others. I was diagnosed August 30, had a skin sparing bilateral mastectomy October 23, and will have my first chemo on November 17th. Starting with 4 DD of A/C and ending with 4 DD of Taxol.

    Being able to read everyone's experiences and advice on this site has me running around buying all sorts of things to try and combat any/all of the SE I may have (THANK YOU!). I live alone, so like some other ladies here, I need to make sure I've got everythikng ready so I don't need to go out in the middle of the night or have to call anyone for help...yup, that's me, Miss. Independent to a fault. By the time my treatment is over, I'm sure I will have softened a bit to allow a little more help from others.

    I look forward to reading about everyone's journey and sharing mine.

    Kiwi

  • orangedaisy
    orangedaisy Member Posts: 129
    edited November 2017

    First T&C treatment of four is done. I had some vein issues. First one blew. 2nd one got tight feeling during infusion and hurt when they flushed it. It happened during Aloxi and after Decadron. They brought in the big guns for the 3rd stick, and moved it to the top of my arm. It worked fine for the Taxotere and Cytoxan. Got a sinus type headache above my eyes and into my nose near the end of the Cytoxan. They gave me Tylenol, and a bag of fluids. I felt better but that has come back. Not quite as strong, but there. Whole process took about 5 hours.

    Was hungry when I got home. Ate food from a local meals for cancer delivery. Everything tasted strong, but tolerable. I can smell metal. It is bizarre.

    Took 2 extra strength Tylenol and trying to drink plenty of fluids. Haven’t felt nausea yet. I have a peppermint essential oil pendant on and I drank a cold ginger drink and took a ginger pill. Nurse told me not to take nausea med until I feel nausea. They want to know if the IV a/n med is working. I’m tired and a bit foggy in the head.

    Oh yeah. I got a Neulasta pod on my belly. It will inject me 27 hours after chemo. Can’t shower with it on. Since I went 12 days with my mastectomy drains, 1 day is not a problem.

    Decided later to take a nausea med to see if it would make me feel better. I feel a bit like I’ve got the flu. No fever. I thought Day 1 and 2 were supposed to be easier. Not looking forward to day 3 - 7.





  • Stage2ire
    Stage2ire Member Posts: 44
    edited November 2017

    hi ladies. Orange daisy, I've done 4 rounds of AC. I took anti nausea meds when I started to feel ill on first round and never fully shifted it, felt like I was always playing catch up. Once I knew Valoid worked I took them before I felt I'll, felt much better on the next couple of doses. It hits everyone differently. I found I didn't feel as sick by day 3 and 4 but that's when the tiredness and emotional low hit. Different SE's for different days.

    Shaneswife, 6 kiddies, you must be a busy lady! I've got 2 young kids and feel I never sit down lol. Having no node involvement is great, it sounds like your docs are hitting it hard to try make sure you never have to do this again.

    I noticed a few people settling alarms for anti nausea meds. I'm a bit further in than you ladies and my sleep suffers so I didn't want to wake myself up. I found taking an anti nausea last thing at night and the minute I woke up along with a good drink helped. I do tend to wake around 6-7am so early enough and some of the anti nauseas (I think zofran) are long acting so will carry you over the night. If of course you have very bad nausea that's different, but otherwise you should be OK to try get a few hours straight at night.

  • shaneswife828
    shaneswife828 Member Posts: 33
    edited November 2017

    Stage2 busy is an understatement lol. They are my world though and all the exhaustion is well worth it. My oncologist did say the treatment was the "big guns" and of an abundance of caution. I think the main thing I hate is that it feels like a one size fits all stage 1 tnbc treatment but when you look further into it those who have a BRCA mutation tend to respond better to platinums and are resilient to taxanes. Maybe I am just to over analytical. I just want to make the best decision for myself and my family. I already have the beginning of fibromyalgia and have degenerative disease in my spine as well as severe asthma so just fear the Taxol will make the pain and all unbearable with my current health issues. This whole situation sucks. If the cancer shows it's ugly head again and I do the Taxol I am afraid I will think what was the point and at the same time if I do not do taxol and it comes back I will wonder if it would have with the Taxol. It really is a damned if you damned if you don't. The research I have found has said that >26% of BRCA mutation carriers respond to taxanes. I have even spoken to people who's doctors decided the risk out weighed the benefit so didn't do it. I guess once I get done with the A/C I will speak to my doctor and make an educated decision.


  • Stage2ire
    Stage2ire Member Posts: 44
    edited November 2017

    Shaneswife, are they planning DD Taxol or weekly? I just had first of 4 DD Taxol yesterday. Very tired but nausea nothing like AC. Overall I feel pretty good, much better than on AC

    They're throwing everything at me. I'm stage 2, had extracapsular invasion in one node plus multi focal IDC, largest tumour 1cm. I also had 9cm of DCIS. Considering I'm a very small A cup my whole breast was pretty much full of cancer.

    I've had a 3 week delay and I worry did some nasty little cell go into hibernation just waiting to attack again during the delay.

    Will you have radiation too? I sometimes wonder if they are just chucking everything at mine and hoping for the best. But then I know if I don't do it and it comes back I'll never forgive myself. Its all about making sure I'm here for the kids.


  • shaneswife828
    shaneswife828 Member Posts: 33
    edited November 2017

    Stage2 they are also planning 4 DD Taxol. No radiation thankfully since I was node negative and had a bilateral mastectomy. Mine was single focal and at it's largest point 1.9cm of IDC. There was no cells anywhere else in my breast tissue other than the mass. Without chemo my odds are at or less than 20% risk of reccurrence. With mine being Grade 3 TNBC they are trying to kick it in the ass just as they are with you. I am currently cancer free as far as they can tell and my blood markers agree so I am hoping it never comes back.

  • Erikag726
    Erikag726 Member Posts: 10
    edited November 2017

    Aymerz33, How are you feeling?

    Today was worse than yesterday. I am so grumpy...Luckily, my husband is supportive and is making sure our girls are not adding to my snapishness.

    I did get some magic mouthwash this afternoon, and I feel better. My mouth was really bothering me.

    Going to try to go into the office tomorrow, but will see. I have over an hour commute, and not sure I am up for it.


  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    Girls - hang in there and head for the light at the end of this garbage! I admire many of you that are busy young mothers, but feel bad you have to deal with this hell so young. It’s also hard to explain to very young children who do not understand why you moms feel so tired or just plain grumpy. You have a right to feel that way. You are babies to me at my age. The good news is - your bodies are strong and can get through this!

    Today I talked to my oncologist and she suggests a 4 round treatment of Taxol & Cytoxan every 3 weeks, or 12 week total period. Temporarily scheduled for Nov. 21st. Just in time for Thanksgiving and Christmas-ohwheeeeee! I have to think about this - my Grade went up from 2 to 3 after examining tumor post surgery. Oncotype was 27. Ki67 - high at 60%. So she said I had an aggressive cancer meaning it grows fast, but caught early. I think I could manage 4 treatments, but it still scares me how it might effect my future health. The percentage of reoccurrence is 18% without chemo, but with radiation and hormone therapy. That's a 1 in 5 chance of it reoccurring within 5-15 years or more. (If I live that long) With chemo, 1 in 10 chance reducing it 50% down to 8-10% percent chance of reoccurrence. Again, I'm 68, with heart disease - hard decision to make for me at this age. I'll still lose my hair and who knows what other side affects I'll have, so going to give it a deep thought to make up my mind. She is using the better drugs for heart condition. I can't use the "mycin" type Chemo drugs for heart.

    So, I have a lot to think about this weekend on this! I hope the best for all of us to get through it.


  • orangedaisy
    orangedaisy Member Posts: 129
    edited November 2017

    I slept in sea bands last night and woke up in the middle of the night with tingling arms and fingers. At first I was afraid it was a chemo SE, but I took off the bands, and it got better. I have worn the bands all day, and no tingling, so who knows.

    My skin is shedding onto my clothes. It doesn’t feel dry, but that’s a lot of shedding.

    And since supper, I keep getting the hiccups, which is one of the know SEs of Decadron. They’ve come and gone so far. Right now staying longer than the other times. Need to read up on what to do. I’ve felt so much better this afternoon, but now I’ve had the Neulasta injection, so things may go downhill.

  • shaneswife828
    shaneswife828 Member Posts: 33
    edited November 2017

    My port has been put on hold(babysitter backed out at the last second). I will be doing at least my first AC via IV. If it goes well I may try to do most if not all this way. I am scheduled to sit down with my oncologist on the morning after bloodwork to discuss if TAC vs AC+T is an option. I like the idea of only 6 infusions as we as the fact that I get 3 weeks in between. I have been planning not to do the taxane so this would be a bit of middle ground between myself and my oncologist. I would get less rounds and more feel normal time and he would still get me to do the taxane. Crossing my fingers it works out. My chemo is Tuesday. A lovely friend of mine has scheduled a fundraiser benefit to help my family and I out financially and it's set for 12/10 at a kids party dance club. She will be having raffles and all. Am hoping I will feel well enough for it.



  • rljes
    rljes Member Posts: 499
    edited November 2017

    Hi Everyone....
    OrangeDaisy - You mentioned issues with your veins during infusion. Are you not getting a Port?  I'm suppose to get mine on Tuesday and very worried.  But I used to get IVIG Infusions several years ago and it became increasing difficult using veins.  What are Sea Bands?  I have a great cure for Hiccups.  I used to be a Bartender back in the day and won many of a bet on this:  Drink Club Soda thru a terry cloth 'bar towel"  (suck the Club soda or Seltzer thru the towel) Worked everytime! 

    Erikag - What is Magic Mouthwash?  Is it a brand name?  (I hope your feeling better ) 

    Shaneswife - I too have Fibro/ and auto-immune diseases.  I'm afraid Chemo will make my joints and muscles hurt worse than they already do. 

    Blair2 - I too was going to have Chemo start Nov 21, but changed it to After Thanksgiving on the 28th.  I was concerned if I had any issues on my first round (which I'm sure I'll at least have some questions) that the offices will be closed and who ever draws the short straw to answer the phones - might not be the best qualified.  Just me Overthinking as usual! 

    Wishing you all the best !  

    PS  - Is there anybody that is HER2 + ? 



  • Aymerz33
    Aymerz33 Member Posts: 41
    edited November 2017

    I'm feeling ok. So so tired and fatigued! Not pukey or anything but definitely sore from all the laying around I've had to be doing due to fatigue. I wish I could perk up just a little bit! I definitely feel like I am in a fog and my whole body and mind are walking one step behind all the time. I honestly don't know how I am going to keep this up and work at the same time.

  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    Hope you snap out of the fatigue soon Amerz33. It gets old when there’s things you want to do - no time to be so tired. I was told by oncologist that I would probably feel more fatigue than nausea. Thank goodness the anti nausea drugs are available. I took one of 20 given to me by my plastic surgeon when I felt bad after surgery.

    It looks to me that most here going through chemo are getting just 4 - 6 rounds of treatments, and we all have early stage which is nice there are several of us with similar diagnosis. I think I beat you all with the grade 3, except Erikag726 - I’m with you gal - ugh

    Those of you who have just started, did your oncologist say when the hair might fall out? I think that will bother me quite a bit.

  • Stage2ire
    Stage2ire Member Posts: 44
    edited November 2017

    grade 3 here too, plus extracapsular extension in one node:( 8 rounds for me. I'm a bit into chemo, I started taxol the other day, but AC done. Taxol proving easier in no real nausea but fatigue is crushing.

    AC caused hair fall to start on day 15 for me. It fell slowly at first, then I cut it back. Day 15 - 20 onwards seems to be the usual

  • Blair2
    Blair2 Member Posts: 353
    edited November 2017

    Oh my, Stage2ire, didn’t mean to miss you, - aren’t we so lucky? My hair is bob length, and I figure as soon as it falls out, I’d get a buzz cut quickly. I look stupid in hats, and my squirrel pouch (under chin) will be exposed. It won’t be pretty. I’m still making up my mind about chemo - I feel I should go through it, but sometimes I think the 1 in 5 threat isn’t so bad. However, I don’t want to die of cancer - would rather keel over with a heart attack (since I have heart disease). I’m leaning more towards going through it. How hard could it be to bare 4 rounds? I think I’ll let my natural hair color grow out to see what color it is. Although gray isn’t exactly a good color with my skin color. I wonder if these milder doses save the brows or eyelashes

  • orangedaisy
    orangedaisy Member Posts: 129
    edited November 2017

    Rljess

    OrangeDaisy - You mentioned issues with your veins during infusion. Are you not getting a Port? I'm suppose to get mine on Tuesday and very worried. But I used to get IVIG Infusions several years ago and it became increasing difficult using veins.

    Hopefully, I am not getting a port. We are trying to avoid surgery, and I can deal with using vein sticks for 4 treatments.

    What are Sea Bands?

    Sea-Band is a knitted elasticated wrist band, which operates by applying pressure on the Nei Kuan acupressure point on each wrist by means of a plastic stud. Because the bands do not use drugs, they do not cause any of the side effects associated with anti-nausea drugs and can be worn on each wrist whenever you feel nauseous. They are available at drug stores and Amazon.

    I have a great cure for Hiccups. I used to be a Bartender back in the day and won many of a bet on this: Drink Club Soda thru a terry cloth 'bar towel" (suck the Club soda or Seltzer thru the towel) Worked every time

    I've figured out fizzy drinks are causing the hiccups. Maybe after I stop Decadron tomorrow, that side effect will stop too.

  • orangedaisy
    orangedaisy Member Posts: 129
    edited November 2017

    Blair2, I was told on average, hair falls out around day 14 with Taxotere. Some may keep it for more days, and some for less. Mine is super thick, and I had it cut pretty short 9 days ago. It already hasa different texture 2 days after my treatment, but not any extra falling out yet.

  • orangedaisy
    orangedaisy Member Posts: 129
    edited November 2017

    Aymerz33, are you still taking Zofran? That is probably making you feel bad. I am taking a different chemo cocktail than you are, and the nurse told me not to take any nausea pills at home until I got the first wave of nausea. They want to know if the nausea meds given by IV are covering it. Also I am wearing sea bands and taking ginger capsules. I wake up fatigued and foggy, but it lifts by late morning. I had my treatment on Wednesday.

  • shaneswife828
    shaneswife828 Member Posts: 33
    edited November 2017

    Blair 2 grade 3 here as well(which is common with TNBC)

  • karentwriter
    karentwriter Member Posts: 113
    edited November 2017

    I've started chemo this month and feeling desperate. Every story I have ever heard is only that people manage chemo well and I find that every bad result you could have is happening. Am I more of the norm or is feeling great the norm?

    Any feedback could help.

  • Stage2ire
    Stage2ire Member Posts: 44
    edited November 2017

    hi Karen. When did you start? My first dose of AC was awful, felt very sick. I pushed myself more than I should and unfortunately also developed a wound infection which delayed next chemo by 3 weeks!

    I've just started Taxol now. Thought I was doing great first 2 days then wham....wall of fatigue and bone pain. I haven't got up today!

    There is no normal. Chemo affects every one differently. Some people have a few side effects, some people get them all. I learned a few tricks with AC. Hydrate well before infusion, lots of fluids after as well, eat beforehand, stay ahead of the nausea.... take meds before you feel sick. Try to eat well on your good weeks, eat whatever you can on the bad days.

    How are you doing? When was first infusion? Hang in there and keep going. I've had to learn to live one day at a time and hand over stuff to others. I'm not great at it lol but getting there.