April 2010 starting chemo

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  • fg2000
    fg2000 Member Posts: 30
    edited April 2010

    Susiesue,

    I am also logging side effects etc. Someone posted a link to the ACS website where you could download a Chemo Side Effects Worksheet, and that is what I am using. If you'd like I will look for the link again and forward it to you. I think the worksheet will be very helpful.

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  • toughmom38
    toughmom38 Member Posts: 79
    edited April 2010

    Had TX #2 today and only SE so far is fatigue and rash on my chest from steroids (same as TX #1). Tomorrow should be OK with Sat, Sun and Mon being a little rougher, but am keeping a positive attitude.  Have to go get Neulasta shot tomorrow, using Claritin and Ibuprofen to ward of the evil bone pain. #2 of 6 Taxotere & Carboplatin down and #2 of 17 Herceptin down!!!!  33% done with nasty chemo drugs and 12% done with the whole nightmare. UGGG!!!

    I am so sorry we have so many new people but we can all get through this together. I am also using the Chemo Side Effects worksheet otherwise I'd never remember what happened on what day.

    I have gotten SO many compliments on my hats and scarves from the American Cancer Society's TLC website.  That's where I got all of my headcoverings and everyone seems to think I look great.  (Or that's what they're telling me to make me feel better, LOL). The longer scarves are a little more challenging to tie but practice seems to be making it a little easier.

    Happy Friday to everyone tomorrow and have a great weekend with as little SE's as possible.  HUGS!!!

    Jennifer

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  • curious_one
    curious_one Member Posts: 17
    edited April 2010

    For DD AC, my onco says that the hair will fall out very shortly after the second treatment.

    Does anyone have any info on wig providers accepting insurance?

    Many thanks

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  • sandcat
    sandcat Member Posts: 3
    edited April 2010

    Hi Marcy4,

    I'm sending you positive brave thoughts!  It is very difficult to convince the kids that your are ok (or as ok as can be expected).  You hang in there!  My son is autistic and loves trains so my hair is a "smokestack" and I am trying to convice him that I will be getting 2 new smokestacks (lucky me), the wig and then my own hair.  Not sure he gets it.  I'm concerned because twirling my hair is one of his comforts.  We'll see when the time comes.  Hair hasn't started falling yet, but chemo brain has temporarily taken over my life!

    Best,

    Sandcat

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  • tpcjkk
    tpcjkk Member Posts: 67
    edited April 2010

    Hi,

    Sandcat, your post touched me.  It is difficult to go through this with kids, especially young ones.  But kids are so resilient, and they have such capacity for caring.  I've been wiped out the past week, laying in bed mostly, almost bald, smelling questionable, but that does not stop my 11-year-old from snuggling up next to me in bed.  I would rather he be playing and enjoying himself doing normal "boy" things, but part of me is so grateful for his compassion.  He was very fearful of me losing my hair, and he was a little in shock when my hair got buzzed, but now he says I look so cute.  Our children will get through this better than we think.

    Take care all. ~ Julie 

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  • DancerMel28
    DancerMel28 Member Posts: 122
    edited April 2010

    HI Everyone,

    Well just got home from having my first lot of TC.  I had a reaction to the Taxol - which they had told me could happen luckily - was not the most pleasant thing (bright red face, heart beat faster and had an awful feeling down to the pit of my stomach) but the nurses were so quick they stopped it, gave me a steroid boost and then waited and started it again and I was fine after that phew!  I must say other than that the whole experience was a lot less stressful than my mind had made it out to be - it's true what you have all said the anticipation is a lot worse than getting the actual treatment.  Am feeling ok at the moment - had a long 3 hour trip home and was dreading that in case I was ill but so far so good. We'll see what tomorrow brings!

    Hope everyone is feeling ok and is managing well with the SEs.  Check back soon :-)

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  • JenC
    JenC Member Posts: 382
    edited April 2010

    Well today is day 2 after first AC and feel much better than yesterday.  I slept for most of the day yesterday and felt neaseus.  I am going to work today maybe not for a full day we will see but I really feel up to it.  Keeping my fingers crossed that it is uphill from here and that I will only have one bad day after AC.  Next one is on May 12 so keeping my fingers crossed.  Thank you to all the ladies for their wonderful advise and words of wisdom.  It helps so much to see what other people have gone through and how they have delt with the unpleasantries of this treatment.  You are all strong woman and I commend you all.

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  • ichelem
    ichelem Member Posts: 3
    edited April 2010

    I hope everyone is hanging in there ok.  I have had a rollercoast of a week.  Had my port placed 1 week ok today and ended up with small apical pneumothorax followed by subcutaneuous air up my chest neck and the worst rib cage pain of my life.  Chemo started Monday with TAC.  Mild nausea controlled with Compazine and Ativan.  Thought this is not too bad.  Got the Neulasta shot Tuesday and with in 24 hours severe bone pain on top of my rib pain-bed ridden for 1 1/2 days.  My oncologist put me on Vicodin and increased my Dexa.  It helped.  Today I feel better still a little achy.  Tips do not think you are immune to constipation.  I will not make that mistake again.  When things start tasting off my oncology nurse told me to to use plastic forks, spoons etc.  It does help.  I have been keeping a diary to things that work so as I tackle the next 5 cycles I know what to do.  To help me cope I break everything down in to small block.  3 days nausea, 2 days bad bone pain  --I guess I will see how many days of fatigue are in store for me now.  Take care Michele

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  • shygal
    shygal Member Posts: 89
    edited April 2010

    Hi everyone.  I just realized that I love checking this forum each day to see how everyone is doing.  For some reason it brightens my day to have other people going through the same experience that I am, at the same time.  Even though we have all had our bad days, there seems to be enough good days in between.

    ArubaJan, you make me laugh.   You're worried about the wind in San Diego?  I guess you're thankful you're not back in Aruba with their non-stop winds!  For anyone who hasn't yet looked into the Comfy Band for wigs, I recommend it.  Seems to keep my wig on more securely and helps with the pressure points of the wig sitting on my head for hours at a time.  I bought mine on ebay for about $20, and I think it's worth it.

    For those of us with kids, I must admit that they have been super supportive and very caring throughout the whole process.  They have also managed to brighten my darker days during this experience.

    Hope everyone has a great day and just about everyone has now completed at least round #1, which puts us all closer to the end! 

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  • susiesue
    susiesue Member Posts: 68
    edited April 2010

    yesterday was day 1 for cycle 2, I started wondering if I had found a new SE........from about 5 pm until I went to sleep, I would sneeze once about every 20 min., so I'm thinking this is interesting.....then as I'm laying in bed wide awake at 1 am, a lightbulb goes off over my head (it may have been a picture of me bald, since they would look pretty much the same.....)......I think I'm sneezing becasue of hair loss....maybe nose hairs?

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  • shygal
    shygal Member Posts: 89
    edited April 2010
    ichelem, I guess our posts just crossed.  You certainly have had a bad first round of chemo.  Hoping that you have a better day today and an SE free weekend; you deserve it.  Sending warm thoughts your way today. 
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  • kad22
    kad22 Member Posts: 191
    edited April 2010

    SGJ05 - sorry to hear how bad your week was - yuck!

    I am going for my second treatment of AC today - I am nervous! Don't want to feel how I felt last time! Hopefully some new meds will help.

    Wow is there a lot of new people on here - it's sad to see that and hard to keep track of everyone! Hope everyone will have a SE Free weekend!

    Take care,
    Kelli

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  • fg2000
    fg2000 Member Posts: 30
    edited April 2010

    I can't tell you and all of the other ladies how much credit I give you all for being able to get up and go to work while going through treatment. I had a couple of rough days during my first round of AC and there is no way I could have functioned at work. Talk about strong women. . .

    I hope everyone has a good and SE free week-end.

    Bless you all.

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  • fg2000
    fg2000 Member Posts: 30
    edited April 2010

    I have been preparing for hair loss which is going to be occuring very soon now for me. I have found that I can make some beautiful wraps very easily with my serger in just a few minutes. Basically, I have been buying about a yard of material, then I cut it to either 32 or 34" squares and simply serger the ends. I love vintage costume jewelry, rhinestone pins in particular, and have found that these work nicely as accents on the headwraps. When I get some time, I will post some pics of the ones I have made and also some of the storebought ones I have purchased. In addition, scrunchies work very well with these. Just pull the tails through the scrunchy to keep the wrap in place.

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  • marcy4
    marcy4 Member Posts: 162
    edited April 2010

    I tried to keep ahead of constipation as well.  I took Colace (stool softener) and got a couple of jars of Baby Food prunes.  I did ok using these things.

     fg2000   I like your idea of using a scrunchy to hold the the ends of the wraps. What a great and easy idea.

    Also, I bought a simple knit cap at the wig store and they suggested that I could add a broach  of other jewellery to accent it if I wanted to dress it up sometimes.

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  • marcy4
    marcy4 Member Posts: 162
    edited April 2010

    I was doing some reading and discovered some research that shows that permanent hair loss may be associated with Docetaxel....possibly 6%.  I am to take this following my first 3 cycles of FEC (Fluorocuracil, Epirubicin, and Cyclophospahamide).  I read that Taxol may be used in place of Docetaxel.  Any others read this or know what drugs are as effective as Docetaxel?

    Going to talk to my nurses and oncologlist next visit and perhaps ask for an alternative, but wondered if anyone out there had any thoughts?  Being bald for a while is one thing, but not forever!

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  • daisylego
    daisylego Member Posts: 57
    edited May 2010

    I posted all the way up at the beginning of the thread that I expected to do chemo on 4/15 but might be delayed. Turns out that I am VERY delayed. We are STILL trying to figure out whether the cancer is in my liver or not. Hopefully I will start by the end of May, but that puts me well behind all of you lovely ladies. Good luck to all of you :)

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  • curious_one
    curious_one Member Posts: 17
    edited May 2010

    Hi Sandcat--

    Wish you well with helping your autistic son deal with your treatment and your hair loss.  I have a developmentally disabled young adult stepdaughter, who is terribly afraid of any illness in her loved ones, as well losing any more members of her small family.  Her mother has been sickly all of her life, and is on husband #4.  Her brother, with whom she was especially close, died as a result of a terrorist  bombing.  Her grandmother passed away very suddenly two years ago from AML.

    My husband is under extreme emotional stress from trying to help his daughter deal with this.  We onlly told her this week, and she is scheduled for a visit with us this weekend.  She lives in a great group home otherwise.  Since she has a really hard time dealing with illness in others, we aren't sure whether the visit will go smoothly.  We've explained that the hair loss (expected in about 2 weeks) is a sign that the medicine is working and making me better.  But I know that it will be a hard time over the next 6 months for both her and my husband.   He's showing signs of stress where it alwas shows up, with various stomach ailments as well as acute hypochondria, She's showing signs of avoidance of me.  It has to get better.

    I wish that you and your family, especially your autistic son, find the strength and equanimity to deal with your treatment positively.  If you have any special tricks or suggestions, please let me know.

    Connie

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  • slh_tn
    slh_tn Member Posts: 61
    edited May 2010

    Count me as another addition to the month of April.   My first treatment was last week (April 22).  My treatment is AC x 4 every 3 weeks, then T x 4 every three weeks.  Next radiation.   Overall, side effects were minimum and I was feeling really good this week.   Found out my white blood cells are low today so I'm disappointed.    Hopefully, taking it easy this week-end will boost my count.   I am so thankful to everyone sharing their experiences.   It was helpful to know what to expect for my first treatment.

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  • Emme
    Emme Member Posts: 205
    edited May 2010

    Connie,

    I was thinking about your situation with your stepdaughter.  Why not wear a wig when she is visiting.  It might make things seem more normal for her to see you with hair,  You don't have to tell her it is a wig.  I know that  people with out special needs have a hard time seeing me with out hair.  They avoid looking at my head when I wear my hats.  I can only imagine how she must feel with a fear of illness in her family.  She has experienced so much loss. I wish you well with your visit.

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  • JenC
    JenC Member Posts: 382
    edited May 2010

    Today is day 4 after first AC and my joints are really aching from the neulasta.  Any suggestions as to how long this will last and any ways to make it a little better.  Kinda feels achy like the flu. Thanks in advance for any words of wisdome:)

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  • shygal
    shygal Member Posts: 89
    edited May 2010

    Marcy4 - Docetaxel is also called Taxotere (it's the "T" for people like me who are doing TC - the "C" is the Cyclophosphamide, also called Cytoxan).  Taxol is in the same family as Taxotere and I believe they have called Taxotere the evil twin of Taxol (they are both considered Taxanes)  From what I've read, both Taxotere and Taxol cause hair loss so I would think that either drug would have the same percentage of permanent hair loss, but ask your oncologist.

    fg2000 - please post those pics of your head scarves....would love some ideas.  Thanks. 

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  • saralmom
    saralmom Member Posts: 329
    edited May 2010

    Well, this is day 4 after AC#2 and I can honestly say it's been a completely different experience than round 1.  I have had minimal nausea, have been laying low on the couch, but never really felt like I went into the cave like last time.  I have taken compazine and ativan one time each I think.  (Emend on the mornings of day 2 and 3).  I have been able to eat something at each meal.  Not sure why this has been so much easier and am pretty much bracing myself for a bad day still...

    Worst new SE was incredible muscle pain starting the night of my Neulasta shot.  I had no SE fro Neulasta last time, and thought bone pain was the main culprit.  But this was totally muscle pain - on every muscle on my torso - back, abs, chest, neck, upper arms, etc...  It started at about 5 pm, peaked at bedtime, and was mostly gone when I woke up.   Read about Neu SE and it turns out muscle pain is one.

    JenC - my nurse told me the other day that Neulasta pain shows up within 24-72 hours and lasts about 24 hours.  Hope yours is gone by now... 

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  • caltex_catlady
    caltex_catlady Member Posts: 136
    edited May 2010

    I'm now on Day 6 of AC # 2. I'm doing Neupogen just Days 5-9 this time (4 fewer days than last cycle). I'd been feeling fine (well, the new fine, anyway) and was hoping it would take a little longer for the big pain from the Neupogen to kick in. Nope, last night was crap. Like saralmom, mainly the torso (mostly in the back for me). Last time the worst was in the pelvis and lower spine.. I still don't sleep well on my sides after my bmx, so it was hard to rest against my back, even in my reclining BedLounge. And my scalp hurts, so that was uncomfortable also. I took some more pain stuff this morning and am hoping the worst is over for this round.

    On the upside, I did the Survivors lap at a Cancer Society Relay For Life last night. It was encouraging to see so many others.

    Karen

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  • Kimmee
    Kimmee Member Posts: 5
    edited May 2010

    4/20 -  Adriamyacin + Cytoxan @ once every two weeks for 4 cycles and then Tamoxifen @ once every 3 weeks for 4 cycles, then surgery (type = questionable at this point), and lastly 6 weeks of Radiation

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  • Kimmee
    Kimmee Member Posts: 5
    edited May 2010

    4/16 - Power-Pac Port put in.

    4/20 - First round of A+C.  Drank lots of water the day before, during and after my "Healing Infusion". 

    4/21 - Received a small dosage of Neulasta.

    All was well until Sunday (4/25).  My sister told me that I looked like a zombie.  I was so tired until I couldn't get off the couch.  On Monday (4/26) laid in bed all day, felt totally wiped out.  On Tuesday (4/27) had a terrible pain that dropped me to the floor.  Rescue Squad was called and off to the hospital I went.  Ended up with a UTI and Staph Infection.  WBC on Tuesday was under a 1,000.  WBC dropped to under 100 on Wednesday.  Was given a big "Boost" of Neulasta.  Thursday morning, WBC increased to just a little under 2,000.  I was released - YEAH!!!!  I was given antibiotics intraveneously and am now on Cipro 2x/day for 6 days.  I'm due for Rd #2 of A+C on Tuesday but am not sure if I'll be able to get it since I'm on the antibiotics.  The Staph Infection is horrific.  Anyone with any similarities to mine, please let me know.

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  • caltex_catlady
    caltex_catlady Member Posts: 136
    edited May 2010

    Kimmee, I'm  so sorry to hear about your infection. As if it's not bad enough with everything else you're going through. I hope the Cipro knocks it out fast and you feel less zombie-like soon.

    Karen

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  • kad22
    kad22 Member Posts: 191
    edited May 2010

    Well like you Saralmom I too am on day #2 of second treatment of AC and this time took EMEND!!! Which worked wonders! I am not sick only a little quesy from time to time so take my other meds and this helps. I can actually eat something- Wow the powers of Emend - I definitely recommend! I am worried that days 3 and 4 will be hard. So far all good.

    Would love to see examples of head scarves - I just can't find ones I like that don't cost a bijillion dollars!! Can only wear the wig for so long at a time!

    Hopefully Happy no SE's weekend for everyone! Talk to you all soon.

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  • ichelem
    ichelem Member Posts: 3
    edited May 2010

    Dear JenC  My really bad bone pain lasted for 48 hours.  My doc increased the steriods and put me on Vicodine.  It made it bareable.  I am still achy now and am 6 days out from chemo.  I hope you feel better soon.  Hang in there.  Michele

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  • arubajan05
    arubajan05 Member Posts: 140
    edited May 2010

    Hi Ladies! 

    Hope everyone has had a wonderful weekend with minimal SE's!  I am on Day 9 of Round 1 TC and it was a rough one.  I have a mild headache and fatigue all day, but the real issue is DRYNESS!  My mouth is like the Sahara! I have been regularly using Biotene and I am drinking water, water, water.... I had to take 2 naps today and both times when I wake up my throat is raw.  After a some water, it feels better but does anyone else have this and do you have any other suggestions besides the Biotene?  (Candies, even with Xlitol seem to make my mouth a little raw...) Hey good news though, my rash seems to be toning down a bit.  YAY! My scalp is tender today too so I am thinking my hair loss is not far behind...

    Hugs to all you beautiful women!

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