February 2014 Starting Chemo Club

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  • h0pe
    h0pe Member Posts: 125
    edited February 2014

    Thanks Lago! This sucks~no other way to put it!

    I don't know who said it before, but I agree - to some degree, I think losing hair is harder than the DMx! WTF?! Mine started really going yesterday. I'm so afraid to touch my head now! 

  • Gardengirl66
    Gardengirl66 Member Posts: 93
    edited February 2014

    formydaughter, I am so sorry to hear about what a hard time you have had with side effects.  I hope the Emend , works for you , I was given that and I think it worked for me. This also must be very hard on your daughter, she too is probably wishing everything was just "normal". Sending big hugs to you and your family, and good luck to your daughter at the dance competition this weekend!

    Purpletron , love your comment about rockin the Mohawk, I thought of that too (my daughter)wanted me too...but the way hair falls out it wouldn't have worked...maybe I waited too long,chopped it all off two days ago (18 days ) after first chemo ....thanks for the laugh. Hope you are in less pain,with each passing day. 

    Tangandchris , I ordered some stuff from tlc, I like what I got ,but ended up being expensive shipping to Canada ...so I would not do that again ...too much duty to pay . It would probably be ok , staying in the U.S.

    Sicilian, congrats on being half way !!! What nice comments too, we do all have each other!!

    Wishing everyone a great weekend with minimal side effects !

  • Gina2014
    Gina2014 Member Posts: 13
    edited February 2014

    I too have started chemo this week. I am looking at 3 more AC treatments with Neulasta injection the following day. Had that done today. I did learn a hard lesson. On Wednesday when I had my first chemo, the nurse said the half hour of anti-nausea meds would last for the rest of the day. WRONG! A couple of hours after I got home it hit me. I started taking my anti-nausea meds but it took a couple of hours before my Ativan kicked in. I learned to take the anti-nausea meds on a regular schedule regardless of feeling sick or not. Prevention is the key I think. I told the nurse today about what I went through last night and she said it was safe to take them on a full time basis. Done. Three more with this round then we move on to four more with Herceptin and another cocktail. Doc said I will have to be on Herceptin for a year. I am concerned about the possibility of the side effect of Congestive Heart Failure. The doc said the benefits outweigh the risk but still, ugh. 

    Thanks for reading sisters.

    Gina

  • lgoldie
    lgoldie Member Posts: 120
    edited February 2014

    Well, A/C no. 1 is done.  No big deal.  I feel kinda like I have a hangover.  Headache, rapid heart beat, a bit achy.  Waiting to see if it gets worse, hoping not.  

  • Njmom3
    Njmom3 Member Posts: 143
    edited February 2014

    Hope good luck tomorrow on #2!  So far since Tuesday today I'm just a little quesy and tired, no problems with the Zulesta.  This is an improvement from the first go round!  

    Hair is still shedding and I still have not decided what I plan to do with it...  

    Hope all is doing well!

  • princessrn
    princessrn Member Posts: 370
    edited February 2014

    Hello ladies... I'm in the land of the living again.  Wow!  I got my ass handed to me.  I am one of those shitty chemotherapy tolerators!  Is there such a thing as good chemo tolerators?LOL

    So I had chemo 2-20 felt ok after and Fri-day.  Friday night no sleeping.  Saturday the nausea hit.  I took the Zofran2-3 times a day up until today.  Super nauseated. Tried ginger gum even.  Headache that is persistent. Tried several things, no luck.  Face rash and chest too, red, flat, circular, non-itching. Sore to tongue tip, only one. Runny nose.  Severe abdominal cramps, killer.  Still today even.  I lost 10#.  Terrible way to do it. And the chest and back pain with muscle aches. I did take the Claritin too

    Went to work Tuesday and on.  Difficult at best but did it.  Saw the NP today and got Bentyl for cramps, and sleeper med.  I got Herceptin today.  I seem ok.  Will see. I am very grateful tomorrow is Friday and I am off the weekend.

    I had my husband shave my head when he was here last weekend.  We did make it to the ballet, only for an hour.  I had tried to eat some soup earlier in the evening of the ballet and just could't. I am working hard to keep my self hydrated though today had diarrhea after a bout of cramping.  JMJ!

    So 2/18 done..just a little more... 

    I think of you all and what we all are enduring.  We're supah stars!  (said in my best South Boston accent)  lol

  • MicheTheVanquisher
    MicheTheVanquisher Member Posts: 105
    edited February 2014

    h0pe, I experience the same thing, I have to keep something in my stomach or I feel awful. Guess this plus no energy is why people gain weight--really changes eating habits and forces me to eat when I'm not hungry, my stomach will just feel better if I put something in it. And then of course, my mouth is a little tender so I don't necessarily want to put anything in it and certainly nothing crunchy like a nice apple or carrot, and nothing citrus like a juicy orange....no it want's something soft and high calorie!!! I've turned into this "feeeeeed meeee" thing!

    Purpletron, I too am across the continent from my friends and family. We moved from Oregon to Maine last September and boy, does that seem like a huge mistake now. There is a cancer support group (oldest member is a 42 year survivor!) that meets once a week plus a craft evening most weeks. Nice to have one place where I don't have to pretend all is well.

    Day 16 so I'm waiting for my hair to fall out. I used cold caps so hopefully my head hair will mostly stick on but the rest of me? DH is out of town til Monday. I told him I might look quite different when he returns. It's so weird, I find myself tugging at little hairs on my arm, wondering, how in the heck could something fastened so well suddenly just fall out? Doesn't make sense.

  • h0pe
    h0pe Member Posts: 125
    edited February 2014

    NJMOM3 - Thanks, trying to relax with my chai tea this morning before I head out. So happy to hear your SE's are still at bay. Hope this trend continues! 

    princessrn - I'm so sorry to hear you had such an awful round. I hope your next one goes better. Enjoy this weekend - you deserve it! I took my meds prophylactically - all of them, whether or not I felt symptomatic. It worked for me. I was very preemptive for the first 4 days - took nausea meds on the clock, then alternated it with Ativan before bed. I did end up getting super constipated, but it could be worse, right?!

    MicheTheVan - Yes, it's horrible - trying to keep something in your stomach at all times when everything tastes BLAH. I hate making myself eat when I feel like crap! I invested in a case of ensure and a case of organic smoothie/yogurt. (I hold my breath and down the the drinks.) They are both high in protein and sugar. I'm 50/50 on the sugar thing right now...although it is not good for me, it does give me energy. It does worry me though b/c I've never consumed so much sugar and carbs in one day, but this is just temporary and I will go back to my normal diet once this is all over.

    Good day, everyone. Will update you soon. Take care of yourselves!

  • lago
    lago Member Posts: 17,186
    edited February 2014

    princessrn it that a South Boston accent or Southie acccent? Either way it would be pronounced "We'yah supah stahs!" I'm from the south shore myself. I do know a gal that only had a  little taste change and of course her hair fell out... that's it. She too was on taxotere, carpboplatin and herceptin. Next time you will know when to start medicating (before the shit happens) so hopefully not so bad.

  • Cici566
    Cici566 Member Posts: 22
    edited February 2014

    I had my second round of a.c. on Wednesday.  It went well. It sure was harder to go back the second time.  My hair started coming out in clumps yesterday so I asked my kids if they wanted to cut it for me.  I thought kids always love scissors and hair.  There were lots of giggles.  They kept me from crying too.  I ha e to wait for my husband to come ho.e tonight for the final clean up.  I several holes and patches.  Now, the hard decision becomes , wig, or hat.  I feel like the loss of the hair was the last huge hurdle to get over.  I assume you just get used to the new you.  Feeling a life teary though.  The decordron probably isn't helping that.


    Good job to all.  Hang in there.  You are doing great.  One day at a time.

  • Ula
    Ula Member Posts: 6
    edited February 2014

    hello ladies,

    I am 25 years old married no children.

    I was diagnosed On January this year. I am stage 2.

    I already had my first cycle of TAC regimen on 11 February, I had intestines infection after 4 days.

    Had to stay at hospital for a week.

    Now I feel good, of course my hair start to fall badly this week. Last week I cut it short but today I got sick of it falling all over the floor, my clothes, my body and when I ever I touch it, so I had it shaved. Believe it or not it felt good. I am currently in Bangkok it is hot here so I feel cool.

    My next cycle is due next Friday, I am hoping it will be easier :). I have to do 6 cycles.

    I would like to join you for more support as I am going through this faraway from my country and family. They contact me on a daily basis but still need people who going through the same  thing.

    Happy to join you :)

  • lago
    lago Member Posts: 17,186
    edited February 2014

    Hang in the Ula. This site is for people all over the world. Let us know what SE you get. We may have some tips for you. Are you doing all 3 at the same time?

  • Allydp
    Allydp Member Posts: 520
    edited February 2014

    Hi everyone, I'm 33 years old, married just over 10 years, no kids yet (had been trying), and was recently diagnosed with TNBC, IDC, Stage IIa, grade 3. I'll be doing ACx4/Tx12 and just had my fist AC infusion on Tuesday. I'm afraid to jinx myself, but so far so good. I haven't had any nausea at all, but I am extremely tired and sleeping a ton - also, very jittery, sensitive to light, having difficulty concentrating and just plain out of it. I also have some mild bone pain from the Neulasta, but tylenol seems to be helping there. Being day 3, am I naive to think I might be through the worst of this round? Unfortunately I have a distant relative's funeral I'd like to attend tomorrow, but not sure I'll be up for it. Any ideas how I'll feel? 

    Thanks so much and hugs to you all from Michigan.  And hang in there Ula. Hope you're healing up quickly from your infection. 

  • KAT4856
    KAT4856 Member Posts: 67
    edited February 2014

    Macintx,

    Glad to hear everything is going well. How did you make out yesterday and today? I had my 2nd infusion of Taxol Wednesday no problems so far. I will not be getting  a Neulasta shot because my WBC was really high so I might not get the aches and stiffness this time. Here's hoping

  • KAT4856
    KAT4856 Member Posts: 67
    edited February 2014

    Lago,

    I didn't shave my head either. I still have some very very thin hair. What did the hair look like when it started to grow back. Did it feel like stubble?

  • Ula
    Ula Member Posts: 6
    edited February 2014

    thank you lago, yes I am doing the 3 at the same time. Each infusion takes around 4 hours.

    I usually get very thirsty at night, and leg pain while sleeping. They had to give me two more shots of neulasta during my infection. I guess that's why my legs hurt.

    Dear allydp, thank you, I am doing well now, I guess I am ready for the second round.

  • Macintx
    Macintx Member Posts: 118
    edited February 2014

    Here's an update on my first AC- the day of and the day after I felt totally normal.  I even went out to lunch with a friend before my Neulasta shot, and had a hamburger and fries that night.  I was told eat what sounds good, and that's what sounded good!  The second night I felt a little weird and didn't sleep all that well, but a lot of that was probably me psyching myself up for the possibility of impending side effects.  The third day I woke up with no appetite at all and I just kind of wanted to curl up in bed because I was tired.  It wasn't nausea, just a feeling of not wanting to eat at all. Kind of like having a hangover without having a headache or feeling like you are gonna throw up.  It's hard to describe.  I did make myself eat just a little (a boost drink and a few bites of oatmeal for breakfast, a nutrition bar for lunch, and about 3 crackers with cheese for dinner) but pretty much had to force it.  I didn't take any medicine during the day, because, like I said, I wasn't really nauseated, just totally not hungry.  I took a long nap and pretty much just vegged on the couch watching TV all day.  I went ahead and took a phenergan anyway at bedtime thinking maybe it would make me go to sleep easier, and it did.  I didn't sleep great again, but this time it was because I have arthritis in my lower back, and sitting and lying around all day often makes me not be able to find a comfortable position at night.  That's no different than before BC.  Anyway, today is day 4 and I feel a lot better.  I was a little hungrier today and had weak coffee and half a banana for breakfast just to test it, then had a turkey and cheese sandwich and baked cheetos at lunch, which I didn't feel I had to force too much.  I took the dog for a walk (it's in the 70's here today) and spent time outside just to get some fresh air before it gets cold again this weekend.  The only other thing I notice is a little tightness in my throat.  It's not sore, just tight.  Could just be allergies.  And I've sneezed a lot today.  Again, probably just allergies.   So, all in all, I've had very little in the way of side effects so far.  My diet has gone to hell, but, oh well.  That's the least of my worries!  I know I am extremely lucky so far!

  • KAT4856
    KAT4856 Member Posts: 67
    edited February 2014

    Macintx,

    The way you fell sounds alot like how I felt no nausea just no appetite. Alot of the time I had to force myself to eat while I was going through the AC treatment. With the Taxol it has been alot better with my appetite. I also remember feeling a funny feeling in my throat, not really a sore throat but did not feel like it usually does. Glad to hear you are doing well.

    Ula

    When I received a neulasta shot after my first Taxol infusion I did get alot of leg and joint discomfort but it did pass after a few days.  The Chemo Nurse told me that it was from the combination of the Neulasta and my infusion of Taxol. This time my WBC was high so I did not have to get a Neulasta shot so I'm hoping no leg discomfort.

  • Brwneyedgirl
    Brwneyedgirl Member Posts: 113
    edited February 2014

    Lago thank you for the remnant idea.  I do not like the way I look in the scarves, but the wig irritates by scalp. 

    Chemo #2 was last Friday.  Less body aches and nausea.  Some how so far do big D either.  YAY.  I do have to day this is the first day I have had any energy.  That concerns me as I am still working everyday.  Hope everyone has a SE free weekend.

  • lago
    lago Member Posts: 17,186
    edited February 2014

    KAT4856 I had a few hairs that never fell out. When my hair started to grow back I actually had to cut them short because it looked weird. You can see those hairs in the 6th photo from right. Here's my hair transition linky.  Starts on the right. Dates on the bottom. 

    1st photo 1 week before BMX.
    2nd few days after my hair started to fall out and I had it cut short.
    3rd photo 19 days after first chemo. Hair is much thinner and dead looking
    4th photo 2 weeks after my 4th tx in that wig I hated that was too big and shiny
    5th photo about 2-3 weeks PFC

    Ula that's a really long day. 12 hours! or 4 all together.

    Allydp some of us (like me) never had any nausea. I was on a different chemo then you though. Don't worry if you don't get it. You'll get you're own special SE but you might be lucky and very minimal

    Ddgm1003 do you have a wig cap? It should help with the itch

  • Gardengirl66
    Gardengirl66 Member Posts: 93
    edited February 2014

    Ula, how awful for you on your first week to be so sick,glad you are feeling a little better. This site is great for info and help from everyone. Hoping each day gets a little better, sending big gentle hugs across the pacific to you ! Keep us posted.

  • Sicilian
    Sicilian Member Posts: 49
    edited March 2014

    Tang, I have purchased twice from doubleheader and have been very satisfied with my purchases. I have decided not to wear a wig and go only with the scarves. It's nice that the pre-tied have free shipping, and my orders come very quickly as well. They are also the most reasonable scarves I've found.

    Stomach was a mess this morning and I was an hour and half late to work. My boss has been very flexible about my hours, so I'm lucky.

    Hope, I started carrying around Fiber One bars in my bag. They're great between meals.

    Anyone else feeling like an alligator? We've had an abnormally cold and snowy winter. When you throw the chemo into that mix, my skin is a mess. I feel like I've been going through lip balm and lotion by the gallon, and it isn't doing much.

  • Ula
    Ula Member Posts: 6
    edited March 2014

    thank yo y'all for your support, it is really big comfort.

    Dear lago, no it is 4 hours all together.

  • lago
    lago Member Posts: 17,186
    edited March 2014

    Sicilian I'm not on chemo and I feel it. More dust in the apartment this winter too. You do know that most dust comes from dead skin cells. But yes chemo dries out your skin. Here's a trick I shared with folks when I was going through chemo. I still do it. I use 2 parts Dove body wash but mix it with 1 part hair condition. (I use Suave because it's cheap). Really helps my skin from getting too dry. Granted you still might need to moisturize in this weather but this really helps. I don't now if these products are paraben free. If you are worried about that I'm sure you could do the same with paraben free products.

    Ula that sounds about right. It was even longer for me because it took at least 1/2 to get my blood tested and 1 hour to make the chemo after I was cleared from my onc & blood test. So that was at least 2 hours for all that including seeing my onc.

  • Maggiemay1220
    Maggiemay1220 Member Posts: 27
    edited March 2014

    Hey February ladies, I am in the March group and have my first treatment of AC on Friday.  Originally when I was set up, they had me in on Wednesday and said it would be perfect since my down day would be on the weekend (day 3 & 4) as I don't want to lose anymore work time.  Now they have moved me to Friday because of port placement on Wednesday and different nurses said that will work because I will feel the worst the day after.  What are you all finding is the worst days?

  • Magandmalsmom
    Magandmalsmom Member Posts: 1
    edited March 2014

    I am right there with you. I am scheduled for surgery again March 7 th. She is going to try to get clearer margins around my sentinel node. Also she will put my port in at the same time. Ten days later meet with my oncologist just to check everything and start chemo somewhere 10 days later so by the 27 th I will have had my first chemo the same treatment as yours. I asked the oncologist when my hair would start to fall out and he said 14-21 days after first treatment. Uggggg anyway good luck it you. 

  • jbokland
    jbokland Member Posts: 890
    edited March 2014

    The morning I got In the shower and had a gobs of hair tangled in my finger, I threw a party that night. About 30 people came as my hair dresser shaved my head. -I also made it a find raiser for the local breast cancer foundation I  a part of (500.00!).  

    I have a wig I don't wear.   Prefer hats and scarves.  I bedazzled in night when I sent commando. ( my profile pic)

    Chemo sucks.  It all sucks.  

    Have fun when you can!

  • DiabloMom
    DiabloMom Member Posts: 19
    edited March 2014

    Hello all, I'm on day 9 after my first treatment [TCH] on 2/20.  The posts on this site have been a comfort to read since I've been diagnosed so I figured I should join.

    As far as SE, the neulasta after treatment was the worst.  I got the shot the day after at 2pm and by that evening the aches had set in.  I had taken the Claritin as recommended but the pain got so bad I couldn't sleep.  It only lasted one more day before going away.  The "Big Ds" started on day 4 and I mostly relied on water, coconut water, and vegetable juice.  My husband makes fresh juices for me every week.  I finally started feeling "normal" on day 7 with the bone pain, fatigue, and Big Ds going away.  But then I began to get other SE.  My tongue and lower lip feel "thicker" but don't look any different and I have a little rash on my right hand.

    I cut my long hair into a bob [which I love and wish I had done sooner!].  Initially, I wasn't looking forward to my hair falling out but my co-workers kind of have me looking forward to it now.  Once my hair starts falling out and I'm ready to shave it off we are going to have a head shaving party at work and do it all together.  I visited work the other day and the guys have all forgone their regular haircuts in anticipation.   

  • h0pe
    h0pe Member Posts: 125
    edited March 2014

    Welcome DiabloMom! Your SE's seem to be on track with most of us - one bad week, and one "good" week. Are your infusions every other week. I too had mouth issues towards the end of my bad week, beginning of my good week. I think it was when my counts were lowest. Gums were extremely sore and bleeding. It got better as I got to the middle of my good week. 

    I noticed on your signature that you are stage 1, but they found mets?  Did they do scans on you even though you did not have any node involvement? just curious. My MO said he usually doesn't order scans for stage 1 patients.

    Wishing everyone an uneventful weekend! Chat soon.

    My Day 1 of AC was horrible with nausea!!! Totally took me by surprise as I was not expecting it to happen on Day 1. Totally think it was d/t the greasy pizza I ate. Eating bland soups today and it is 100% better, just a little fatigued. 

  • h0pe
    h0pe Member Posts: 125
    edited March 2014

    Sicilian - Have you heard of "The Kind" bars. They have them everywhere now, usually in the all natural/organic section. They are really high in both fiber and protein. Mix of fruit and fiber. Pretty tasty too. 

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