April 2010 starting chemo

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  • Pickles
    Pickles Member Posts: 80
    edited April 2010

    Large Truck seems to have run me over in my sleep last night...still no nausea, but I just feel wrecked.

    And to top it off....my nose is covered in little acne bumps!  Poo!

    Doable, yes but Wow, i'm out!

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  • caltex_catlady
    caltex_catlady Member Posts: 136
    edited April 2010

    Julie, good list. I do find that small snacks rather than full meals seem to help. And naps!

    I'm glad I'm not the only one with the breakouts. It's just another little annoyance.

    I had my Neupogen shot yesterday and do notice some mild pain in my jaws and back. Don't know if this is what they mean by bone pain, but so far it's not bad. I have to give myself the shot now, though, for the next seven days. I guess I'll get used to it, but I'm not fond of needles.

    Karen

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  • susiesue
    susiesue Member Posts: 68
    edited April 2010

    I had a very good day 1 and day 2......but......day 3, today I have struggled....queasy, no appetite....kind of scary.  I think I am feeling overwhelmed with the fact that I have to deal with this for the next five months. I also think the whole experience is sinking in.....all of the tests, needle sticks, surgery, etc.  I 'm trying to be optimistic and just take it a day at a time. I hope everyelse is doing okay.  It's hard to imagine doing this over again, and again.....I'm also wondering if the side effects are cumluative......will I feel worse on cycle 2..

    Karen, I had my neulasta shot yesterday and felt good, but last night and today I also have had some jaw pain so maybe that is a SE.

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  • saskabush58
    saskabush58 Member Posts: 9
    edited April 2010

    Hi, add me to the list as well please! I will be starting chemo in April as well, don't have an exact date yet. This is my second go round with BC. The first was 9 years ago, DCIS right breast, had lumpectomy with all lymph nodes removed and 33 rounds of radiation. I was put on Tamoxifen, but due to se's was unable to continue. In place of that, I had my ovaries removed in April 2002. In Nov. 2009 my mammogram picked up a shadow on same breast, so was sent for an ultrasound, then core biopsy. On Dec. 21st, I got the call saying my cancer had returned. I decided to have a bilateral mastectomy with immediate reconstruction. Co-ordinating surgeons schedules proved to be a bit difficult, but I finally got a surgery date for Mar.5, 2010. Had the surgery done, and 300cc tissue expanders in place. Wow those things are more uncomfortable than I had imagined. I've only had one fill so far, as the previously radiated side is very tight and could only take 30cc's. Its looking like this will be a long process.The core biopsy said I was ER/PR+ HER2+2. The final pathology said I was ER/PR+ and HER2-. So they had to do a FISH test which came back neg. My cancer Onclogist had a meeting with the board of Oncologists, and they all felt very strongly that I would benefit significally from having chemo and possibly hormonal therapy. Now I'm just waiting for a date, and treatment plan. I'm glad I found this board, to help prepare for the next few months and meet some wonderful new friends!

     Cindy

    diagnosis 12/21/2009, IDC, 2cm, grade 3, ER/PR+  HER2-

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  • SGJ05
    SGJ05 Member Posts: 73
    edited April 2010

    Welp, looks like tonight is the night that I am going to buzz my hair. It has been shedding like crazy today and my scalp is extremely tender. Although I knew this day was coming, I am a little bummed:( I had hoped that perhaps I would be lucky and not lose my hair, but this does not look like the case. While the hair loss may not be obvious yet to others, I do not want to continue to see it falling out! So here I come clippers--wish me luck and courage!

    Hope everyone is having a great weekend!!!!

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  • caltex_catlady
    caltex_catlady Member Posts: 136
    edited April 2010

    susiesue, it sounds like the jaws might be a common area for pain after the shot if we've both got that. Yesterday I was better in general, but this morning I woke about 4 am and felt like the old Mack truck had hit. It ached all over. I just lay there for a while then got up and moved around a little, and that helped, but I wonder if I have that to look forward to every cycle.

    saskabush58: I added you to the list. Just let me know when you have a date and treatment if you want that added. I'm sorry you're having to go through all this again. I had also had trouble coordinating my general and plastic surgeons, so I had a bmx in Feb. (didn't want to wait for the PS to be available) and haven't done reconstruction yet. We'll see if I still want to do that after finishing chemo. I may be sick and tired of all this at that point.

    SGJ05: Wishing you a good day for your clipping. Are you going to do it yourself? My hair hasn't started to fall yet (I'm only 1 week out from first tx), but I find I'm being really delicate with it, like that's going to help keep it in.

    I see the general surgeon tomorrow for a routine follow-up. We'll see what she says.

    Karen (caltex_catlady)

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  • shygal
    shygal Member Posts: 89
    edited April 2010

    SGJ05 - so sorry you are having to "do" your hair today.  I figure I'm a week behind you.  I have decided that I can't bear having my hairdresser buzz me out in the open (he doesn't have a private colour room) so my husband is going to do it for me.  I am already anxious about the whole thing and keep pulling the hair away from my face to try and figure out what I'm going to look like bald; it's just too upsetting to even imagine.

    Re jaw pain.   Even though I haven't had a Neulasta or Neupogen shot, I have had a few moments of jaw and other joint pain.  Even thought I was getting an ear infection for about 5 mins one day.  I keep reading about taking Claritin D before and after your Neulasta shots...does this also work for Neupogen? 

    Welcome to the club saskabush58

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  • marcy4
    marcy4 Member Posts: 162
    edited April 2010

    SCJ05  - Thinking of you as you cut your hair. My chemo starts tomorrow and I know that my hair is now in its final couple of weeks. I have my wig ready and have tried to convince myself that losing my hair is not a big deal, but I know when the time comes, it will be very hard.  I think when I see myself bald, I will see myself as being sick.  My husband said it will be a sign that I am getting better and that the treatments are working.  I know he is right, but still it is not easy. PS My husband has been bald since he was about 18, so we joke about who will be the better looking bald person.

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  • kad22
    kad22 Member Posts: 191
    edited April 2010

    SGJ05 - So sorry to hear that you are having to cut your hair - my thoughts are with you! I know it's hard but remember it will grow back - that's what i keep trying to tell myself! Even though I was like you hoping that I would be the one where it wouldn't fall out! So what made you decide other than the losing it? Was it coming out in clumps? Did your scalp hurt? I just want to be more prepared for when it happens to me, most likely this week as I am 1 wk behind you. I am going to a salon where she ordered my wig and has it standing by then she will shave me in a private area and help me with the wig.

    Hope everyone is doing well! I am feeling better just still have to watch what I eat because it I don't - OH BOY! Smile

    Have a great Monday everyone and a week without SE's! Glad to have you all to talk to just wish we were here for other reasons.

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  • susiesue
    susiesue Member Posts: 68
    edited April 2010

    just something fun, more hair drama......after getting my hair cut, then recutting it into the style of a four year old, I was unable to take a shower due to port placement. So I can't stand it anymore and I tell my husband he will have to help.......we used a shower liner, cut a hole in it for my head then washed my hair in the sink.......dog thought this was great and really wanted to help......It wasn't too bad.  My husband generously offered to dry it......we both had a good laugh as I now have the hairstyle of my great aunt from the 1960's........

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  • susiesue
    susiesue Member Posts: 68
    edited April 2010

    today is day 5...... yesterday I slept more than I would have thought possible, I have apparently perfected the art of sleeping while sitting upright.  I feel better from day 3 but still no appetite, just tired, I'm hoping my outlook will improve.......hope everyone else is doing good, hang in there

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  • Pickles
    Pickles Member Posts: 80
    edited April 2010

    Susiesue-

    The visual of you with a shower curtain over your head made me giggle this morning...And I haven't giggled since Wednesday! Thank you!! I'm starting to climb back out of this hole Chemo #1 threw me into.



    My tongue is swollen and my skin is broken out but am not as achy this morning. I'm actually dieing for a walk!



    SGJ05-



    Hope you were able to have some feeling of power and peace while shearing your locks. I'm taking mine off this coming Saturday. I know I'm going to cry, but crying for no reason at all became the norm this weekend...SE #5?



    Marcy- I'm sending you strength and peace for the start of your journey through Chemo today. Hang on to us! We're pulling for you!



    Healing strong thoughts to all!

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  • saralmom
    saralmom Member Posts: 329
    edited April 2010

    Hi everyone.  Just thought I'd throw out some good news for those starting or sill feeling sick.  I officially felt good yesterday and still do today.  Like my normal self - which I wasn't sure I'd ever feel again - honestly.  I'm eating mostly normal (careful b/c there are some repercussions - stomach not used to it I guess - i.e. diarhea) and no nausea at all.  A few occasions of needing to sit down if standing too long - soccer game, etc.  So there is hope - and I now cling to the fact that it took 5 days but I got back to normal.

    SJ - feeling for you as you cut your hair.  I have my appointment for a marine cut and wig fitting next Monday and I'm dreading it.  Like Marcy, I feel like I'll look more sick.  Oh well, can't stop this part even though I hate it.

    Marcy - hope you have a smooth treatment day today and few SE this week.

    Re: jaw pain - I kind of thought I had no SE from the Neulasta, but someone mentioned having ear pain from it - and I had the same.  Maybe that qualifies as a jaw pain of sorts and a SE of my Neulasta shot?

    Have a good day all!!

    Sara 

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  • SGJ05
    SGJ05 Member Posts: 73
    edited April 2010

    Thanks everyone for the kind words and encouragement!! There were lots of tears yesterday as my husband buzzed my hair down to about 1/2 inch. I could not bear to go any shorter than that, I am going to do it in stages, I think it will be less traumatic for me. I had all my kids gather in bathroom and we did it as a family. I cried a few times, but tried to stay strong for the kids. My 15 y/o told me I look great, my 8 y/o told me I look like a pretty princess and my 5 y/o told me I look like a boy --guess I know where to go for an honest opinion, LOL!!

    Kad22- I knew it was time to consider buzzing it because my scalp had been very tender and itchy for a few days. It then began to shed as I combed it. It did not come out in clumps, but I was able to pull it out by gently tugging on it:(

    Susiesue-Your post made me chuckle with your head through the shower liner,lol!

    well, Good Luck to those who are preparing to buzz your hair (HUGS)!! Also, Good Luck to those who are starting chemo. this week (HUGS)! I have my second round on Thursday-BOO!

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  • Mouse6
    Mouse6 Member Posts: 246
    edited April 2010

    Just wanted to offer some encouragement to you ladies. I finished my chemo regimen this month, and I know it seems like a long row to hoe right now, but it will come to an end sooner than you think. Each treatment is one closer to the end! Hang in there.

    As for the hair, I just wanted to say - beware of buzzing the hair too short, because it's very prickly on the scalp. Satin pillowcase helps somewhat with that.

    Saralmom - I did get ear aches and jaw aches with neulasta as well. Also hurt like heck to salivate!

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  • tpcjkk
    tpcjkk Member Posts: 67
    edited April 2010

    Hi,

    Thanks, SGJ05, for sharing your hair story with us.  I have noticed more and more strands starting to fall out, but not in clumps.  No scalp issues, but my hair is also very dry, and overall kinda a ratty mess.  

    SOOO, I decided I'm going to shave it all off the day before round #2.  I go for #2 on 4/22. I figured why wait til it really starts to go, which will probably be right when I'm in the middle of feeling yuck after round #2.  

    I also signed up this morning for the ACS Look Good...Feel Better session on 4/26.  I've heard such good things about this program.  I hope they help me with my skin...like everyone else, I've had terrible skin issues.  It's like being in high school again...it must be the lowered immunity, allowing bacteria to claim my pores!  Also, my skin is totally splotchy and kinda ashen.  Every single freckle on my face now looks like a giant age spot.  On the bright side, I feel good, and am using that to psych myself up for round #2.

    Take care. ~ Julie 

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  • susiesue
    susiesue Member Posts: 68
    edited April 2010

    okay, here's my question, how do you know when to slack up on the anti-nausea meds.......my husband's answer was to stop taking and see what happens (am I the only one who sees a flaw in that logic)?  It was recommended to me to use them through the first four days then maybe see about using them less.......

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  • shygal
    shygal Member Posts: 89
    edited April 2010

    Good day ladies, well woke up with a furry white tongue.  Felt like the roof of my mouth had no feeling and extremely dry  - figured this was the beginning of thrush.  Called the onco clinic and they prescribed Nystatin. Other than that....a very good, one week anniversary today.  Feeling pretty darned fine except each evening when I can feel that familiar low-level nausea around 8:30pm.  I find if I have 2 saltines, some water and my anti-nausea drug, I can manage but it's causing me to have hours of no sleep.  The onco clinic suggested I try gravol instead of the Stemetil they prescribed - we shall try tonight.

    Susiesue - I have tried going without and so far (day 7) it has always backfired in the evening.  I can manage in the day, but not at night for some reason.  You should see what happens if you miss one in the day time.  If after a few hours you start to feel nauseated, then you can take the missed dose.

    I was told about today being my "nadir" day - lowest white blood count level day - and decided to stay in my bubble just to be safe.....made it a baking day.  Hope everyone is getting sunshine and nice weather today. 

    Julie, Look Good, Feel Better is worth it just for the free products.  They didn't really tell me anything I didn't know, but I got to try some new brands that I will keep using after this chemo is over with. 

    Cheers.

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  • tpcjkk
    tpcjkk Member Posts: 67
    edited April 2010

    Hi,

    Susiesue, I agree with shygal; the nausea seems to be worse in the night.  Maybe it's the lying down.  I also notice a full, bloated feeling if I lay down flat, so I usually sleep a bit propped up.  I actually got up to eat during the night, too, since just having a little bit in my stomach took the edge off that queasy feeling.  I took the Emend and dexamethasone as prescribed (through day 4), and then my "as needed" meds, Zofran and Ativan, as needed - which is to say, I didn't allow myself to suffer.  I did not need the Zofran after day 5.  Maybe try going without the meds, but if you just aren't feeling great, or it's hard to sleep, you should not suffer.

    Good luck. ~ Julie

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  • caltex_catlady
    caltex_catlady Member Posts: 136
    edited April 2010

    I'm also at my one-week anniversary. As for nausea meds, I had Decadron, Emend, and Zofran for Days 2-3, then just Zofran as needed after that up to every 8 hours. I took a couple of doses for days 4-5 then just at night the next night. Last night I'd been OK, so I thought I'd do without the Zofran before bed, but during the night I did feel a little wonky so took the dose. I'm hoping one or none will do me until next week's treatment, but if I feel a twinge, I'm taking the dose. Better to avoid nausea than try to recover from it.

    I also sleep semi-reclined, so I think that does help with feeling bloated at night. I keep some animal crackers and water by the bed in case I need something in my stomach.

    I'm going to sign up for Look Good Feel Better as well. The next one isn't until mid-May, so I'll probably need all the help I can get at that point. My face is dry but also breaking out, so I've only been using a little moisturizer.

    Anybody else wondering what their skin looks like under their hair? I tend to get breakouts along the hairline, which would look weird with no hair. Both my mom and my sister went through chemo, so I actually sort of have an idea what I'll look like, but it's still going to be a shock.

    Susiesue, your shower curtain story made me smile. Even amidst all this craziness, there are things that are just funny. My funny story is from my surgery. When I was about to have my bmx, I was prepped and wearing this type of purple paper gown that has places to hook up to warm air blowers to keep you warm, kind of a neat idea since the rooms are so cold and you're lying there naked as a jaybird under the gown. I'd been rolled into the OR and they hooked my gown up to the blowers. They had it on too high so that, as I was lying there on my back, my gown was getting all puffed out and I felt like the girl in Willy Wonka who turns into a blueberry.Sometimes it's the absurd stuff that seems funny at the time.

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  • susiesue
    susiesue Member Posts: 68
    edited April 2010

    Karen,  I have the same hair issue.  I have breakouts along my hairline, etc. and have been dreading what my head would look like.  I felt like the only one.  That's the good thing about this board, usually if you have a problem or a SE, someone has too.  I keep telling my husband that I'm worried how my scalp will look.  I am wondering.....I have a very freckled complexion and have no idea if that extends to the scalp....

    good thoughts to all.....

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  • marcy4
    marcy4 Member Posts: 162
    edited April 2010

    Ladies, I am happy to say that I have survived Day 1, so far.  I am taking the meds I was given and other than a headache and feeling a bit tired I am not too bad.  For anyone waiting to start, as these ladies said, we can all get through it.  I am anxious to see how the week goes but plan to just take one day at a time.  I get my Neulasta shot tomorrow and perhaps will have some SEs from that. 

    Susiesue- My port was put in last week so they could use it today.   The first fews days I had it I thought I had made a mistake, but the dressing came off today and if feels great!  What a relief not to have the nurses poking around trying to find a vein.  I am sure you will love yours too.

    About the hair thing-- My little kids want to use markers to draw Homer Simpson hair on me when I lose mine.  I think if they are washable it might be OK.....will have to wait and see.

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  • toughmom38
    toughmom38 Member Posts: 79
    edited April 2010
    Hello, ladies!  Well, today is day #11 for me and I went to the doctor to have my blood checked, to make sure my WBC were high enough.  I did not have a Neulasta shot the day after my treatment, apparently they don't automatically give it, only if they discover you need it after the first TX.  Well, the normal range for WBC is 4.5-11.0 and mine was 1.4 !!! The normal level for neutrophils is 2.00-8.00 and mine were 0.08 !!!  Gee, I guess that explains why I have such terrible mouth sores that won't go away.  The gave me a neupogen shot and I have to go back every day this week for more. Told me to stay away from sick people, wash my hands, don't eat from a salad bar, and clean any raw foods really well.  Next time, they'll give me a Neulasta shot the day after treatment so this won't happen again... I can only guess how much better I would have felt the last week and a half if I had had some WBC in my bloodstream!!! You gotta love insurance, they don't want to pay unless they absolutely have to (and after I had to suffer for a while).  But the bright side is that maybe I won't have as many SE after TX #2.Laughing
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  • SGJ05
    SGJ05 Member Posts: 73
    edited April 2010

    To all that had breakouts after chemo., add me to the list *sigh*! My face broke out like it did when I was a teenager, thankfully it has since cleared:) I am hoping it was just a first time reastion and doesn't happen again-nothing like adding to the ole self esteem with pimples, geesh!

    susiesue- I believe I used my anti-nausea meds. every 8 hours for the first 4-5 days:) I figured better to be safe than sorry, right?! I also had to take one Zofran on day 8, for some reason I had nausea and was unable to shake it.

    marcy4-Congrats on making it through day #1:) May you have little to no side effects!

    tpcjkk-We both have our next chemo. on Thursday. I am keeping my fingers crossed that it is uneventful for both of us and that or we have little to no side effects!

    caltex_catl- I went to the Look Good, Feel Better group last week. I got some really great products to take home and learned a lot about wigs and how to wear scarves. I highly recommend it:)

    toughmom-Sorry to hear about your low counts:( I get the Neulasta the day after chemo. and my counts have been great, so hoping it will work for you as well. BTW--I take Claritin a couple of days before the shot and for 10 days afterwards and have had no bone pain.

    Pickles-Sorry to hear about your tongue. Did you call your Onc.? And you are not alone in the wonderful world of tears. I seem to cry quite a bit these days and I am not a crier!!

    Saralmom- Glad to hear you are feeling good!! I found that after feeling so crumby for the week after chemo. I was ecstatic when I started feeling better:) Hope you continue to feel good!

    shygal-Sorry to hear about the thrush--I hope the meds. work quickly for you:)

    Have a great night everyone!!

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  • DancerMel28
    DancerMel28 Member Posts: 122
    edited April 2010

    Hi Everyone,

    I'm due to start my chemo on April 30th - TC x 4.  I'm feeling rather anxious about it all as I've had a rough time after my surgery - lumpectomy and sentinal node biopsy - as my breast wound got infected and it took me going to lots of different people to finally get someone to take me seriously that something was not right (it wasn't just 'my way of healing' as one nurse told me).

    After reading everyone's posts and the fact that I'm actually finally starting to feel 'normal' again I am feeling so much more positive about everything - I figure that's a much better frame of mind to go into next week with Smile

    Anyway, am seeing my oncologist tomorrow so have a long list of questions to ask after reading your posts. Thank you to everyone for sharing your experiences so far - am looking forward to sharing more over the coming months. Fingers crossed Laughing

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  • saralmom
    saralmom Member Posts: 329
    edited April 2010

    Hi everyone.  Random question - what is the deal with Claritin for Neulasta?  I had read about it here, but when I asked my onco and my surgeon and my chemo nurse, none of them had ever heard of it for Neulasta SE.  I get that it my be a non-traditional remedy, but it seems like they would have at least HEARD of it?!

    I ended up taking it (they all agreed it can't hurt) the day of chemo and for 2 days after, but since I didn't have any real direction I didn't take it again.  How are you all taking it?  Before, after, for how long?  Thanks!

    Sara 

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  • SGJ05
    SGJ05 Member Posts: 73
    edited April 2010
    saralmom-I don't think there is any scientific data that supports Claritin working for Neulasta bone pain, but my onc. nurses swear by it. I start taking it 2 days before chemo. and usually take it for 10 days (I believe my nurse said, Neulasta bone pain can spike at day 10). So far I have not had any bone pain, so I am going to continue to take it throughout my treatments. I figure what can it hurt--it is allergy season here anyway:)
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  • Emme
    Emme Member Posts: 205
    edited April 2010

    Hi, Count me in!  I will be starting AC X 4 dose dense, on the 30th.  This is my second round of chemo.  My first was Taxol weekly with Lapatanib daily for 6 weeks in January-February of this year.  I had a bi-lat mastectomy on March 31st. The good news is at the time of the surgery, no cancer was found! The was only a small amount of precancerous abnormal cells.  I am very hopeful.  

    Emme 

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  • nkbk0108
    nkbk0108 Member Posts: 3
    edited April 2010

    Hi. I'm going today to get some results, I hope. I'm meeting with a tech to go over the port thingy (hate it already) and then meeting with the plastic surgeon. Hopefully I'll get some answers today.

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  • shygal
    shygal Member Posts: 89
    edited April 2010

    Hi everyone - Starting my 2nd week out from TX#1 and my taste buds have disappeared....ahhhh.....I can't taste hardly anything.....coffee is weird, spices disappear and even spicy heat doesn't show up.  Does anyone know if this lasts throughout or is this just during a certain timeframe in the round?  Thanks.

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