Starting Chemo October 2009

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  • one-L
    one-L Member Posts: 1,110
    edited October 2009

    Mary they did mention the Tailorx trail.  If I had been one point higher then I would have been guaranteed chemo, but I had already made up my mind and did not want to make any more decisions.  I don't want to look back with regrets.

    I go to the surgeon on Thursday to discuss when I will get my port.  If I can get it next week, then I will have my first treatment the same day, I hope anyway.  I am ready ready ready.

    Juannelle

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  • joanneasiata
    joanneasiata Member Posts: 719
    edited October 2009

    oh wow just finishad reading your posts my first chemo is friday  so a lot of you ladies  are in front of me im going to expect the worse and if its going well then ill be happy i think ill clipper my head when the chemo starts im not brave enough to have clumps of hair in my hands around day 15  my thoughts are with all of you every day its nice to be on this site i think ive said this a lot of times in previous posts  talk soon lots of hugs joanne

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  • ReneeJean
    ReneeJean Member Posts: 100
    edited October 2009

    Well, it is day 14 and right on schedule my hair is leaving my head....none on my pillow this morning, but in the shower I was shedding more than normal.  All day, if I ran my fingers through my hair, I would lose about 20 hairs at a time and more than normal shedding on my shoulders...sigh...   I stopped and bought a wig brush and washed my wigs tonight but am not ready to shave my head.  Maybe tomorrow night...but I would like to hold on until Saturday if I can.  It is so silly to be so wrapped in my hair, but I can't help it.  

    The good news is that I went back to work yesterday.  I am not working in the ED on the floor but helping with billing and such.  It is great to be back at work even though I am not doing my normal job. My managers are awesome and offered this job without me asking...it was an answer to prayer.   My schedule is very flexible and I can work as I feel good and how it fits MY schedule.  How great is that for a nurse that is undergoing Chemo????   So, now 6 days until Tx #2 but I am not thinking about that.  I am tired in the evening, but not a bad tired, just a 'I got up at 530am tired'....LOL.  I have good energy and while I still get an occasional gust of nausea for no reason and my taste buds can't decide what is good one day to the next, it is managable.  I pray the rest of my treatments are as well managed and pray this for EACH OF YOU. 

    And I love hearing that we WILL regain our lives post-chemo.....it is what I focus on.  My grandbabie's 1st bday will be in March and I will be done with Chemo and hopefully have my exchange surgery by then....that is what will get me through each treatment!  And the thought of becoming a VERY OLD woman in 45 or 50 years!!!   Hugs to all.

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  • snuziq
    snuziq Member Posts: 107
    edited October 2009

    Shelby - I am glad you are feeling well.  Be on the look out, I didn't feel bad until day 2.5.  The good news is that it just felt like a little cold / stomach thing and only lasted for 3 days; but I was totally wiped out.   I hope you do even better than I did.  Heck, with the cold front that came through North TX that weekend most of my problems could have been allergies!  

    JHenry299 - I too am allergic to the Taxotere.  The good thing on my end is I have had an anaphylactic reaction to another drug so I knew the signs early and got the benadryl & hydro-cortisone early.   My doctor wants to try one more time before we change medications because I didn't have the steroids the day before (rx wasn't ready).  Hopefully, the lower dose will keep you from having a reaction.

    So far I'm on day 14 of cycle 1 and I still have hair.  From what people on the boards say it seems like day 17 or 18 is the average so I am not planning for it to stay.    Last Wednesday I went from the bob to a boy cut.  I kind of like the new do, but my head has been really itchy so I don't think it's going to last.  Since it's only an inch or so long now, I haven't decided if I am going to buzz it or not.  I guess I will see how crazy it looks when it starts to fall out.  I haven't started losing hair on "the lower south side" so I guess I may have hair until the weekend. Laughing

    Hopbird - sorry you are having to wait so much.  My first treatment ran a lot like Onty's other than the slow downs of the allergic reaction.  Hopefully, it was the exception rather than the rule for you.

     Good luck everyone who is starting this week. Here's hoping for an easy infusion and no SE's!

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  • newtonville
    newtonville Member Posts: 43
    edited October 2009

    hi all,

    i survived my second AC last week. im on dose dense, and it does only give a week roughly to recover between sessions.   also my hair fell out in large clumps in the last few days, and had it shaved last nite with lots of cries. it was very sad.  picking hair in clumps everywhere is very painful.at least now it comes acceptance and dealing with it. feel little insecure, thinking everyone is looking at my hair outside.  still hair itches and tries to grow back in between, feels spikey. very weird feeling.

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  • newtonville
    newtonville Member Posts: 43
    edited October 2009

    Anita,

    good to hear you r doing well. my salon did not do front lace unfortunately.  i want to look for one after my chemo ends. at least for the next  few months i can move on with more confidence. i m on disability and not working now, so until i start work, im okay doing whatever with wigs/scarves.  i really want to try the front lace.good to hear you are enjoying it.

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Hopbird, what is waiting time? Oh yea, that evil thing that we have to live with at doctors offices! You are right....

    Dear Carole, thanks for the encouraging words.

    Dear all, today - Day 17 - DH buzzed my hair down to size 3 a few minutes back. I kicked, hemmed and hawed and then gave in when I saw hair falling everywhere. I wasn't ready to have him shave it yet. Maybe we will do that tomorrow.... DH says I look beautiful...... lol.

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  • MaryNY
    MaryNY Member Posts: 1,584
    edited October 2009

    Newtonville, was the aftermath of the second Tx better or worse than the first one? I know you mentioned terrible constipation problems after the first.

    Onty, how short is size 3? You are brave to go that far. Actually when I went to the Look Good Feel Better workshop they advised us just to cut hair short but not to shave it. I think the reason was that apart from being emotionally difficult, they said that the hair would start to grow back between treatments anyway to a minor extent so maybe it was to give the new growth company. I'm guessing that the scalp soreness people feel is the result of a weight of hair pulling on the weakened follicles. So maybe if the hair is just cropped short, you don't get that uncomfortable feeling. I'm making all this up as I go 'cos I really don't want to have to shave my head. But the bit about the advice at LGFB is true.

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  • newtonville
    newtonville Member Posts: 43
    edited October 2009

    MaryNY

    my dose dense takes fewh ours.   i go around 9 ish forblood work , andthen oncologist discussion and if it starts around 11am, it is over by 2 or so.  so it takes around  3 hours for me.

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Mary - thanks for sharing LGFB insight!! Size 3 is short like maybe 3/4"? DH gets his own haircuts on size 3. Maybe I will allow him to use #1 tomorrow. No shave...

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  • newtonville
    newtonville Member Posts: 43
    edited October 2009

    MaryNY

    the second SE was MUCH better,this time.the reason being, i was more prepped this time. i started the stool softener a day before and took EVERY DAY during first week.  ALSO nurse told me Miralax,the laxative, i started first day for two or three days and it helped aswell.   little bit being careful on what you eat and etc really helps.  so second time was better than first one. i just didnot know what to expect first time, and it was painful.  hoping to be careful more so even on the 3rd.   also i gave in to Ambien since i can't sleep during stereoid taking days first 3-4 days of chemo.   i only see it as temporary and will never have to do it after chemo.  (i ve been always natural type of girl that stays away from drugs unless i have to)...

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  • newtonville
    newtonville Member Posts: 43
    edited October 2009

    unklezwife

    how come the duration of chemo sessions are shorter each time?  do they push it faster than the previous ones?  i remember first day was a whole day deal for me. second one was slightly shorter.   so im now really looking forward to coming home earlier on the next remainder two.. i m just curious, what isshorter, the duration they push or the amount of drug.  i assume the amount of the drugs are the same,right?   thanks

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  • micheleboots
    micheleboots Member Posts: 1,993
    edited October 2009

    Ladies,

    So yesterday I decided to go out shopping for scarves and hats.  Just want to be prepared..What an adventure that was.  Although I did find a couple of cute hats, the scarves was another thing.  I have come to the conclusion I look BAD is scarves.  I look like a combination of Johny Depp, Gloria Swanson and Aunt Jimima. (sorry if the spellings are off). I think I would rather go bald in public...Although I did get a sassy hot pink and a blond wig, at the local costume shop...One great thing about this time of year...funky wigs are cheap.  Lucky for me I live in Canada so I will be able to wear hats all through my chemo.

    Michele

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Newtonville,

    I heard that the first 2 times are slower because they want to be watching very carefully and do not want to introduce allergic reactions. The drugs are the same amount.

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  • newtonville
    newtonville Member Posts: 43
    edited October 2009

    ok great unklezwifeony...   so far i guess im not allergic. it is good next visits will be shorter. thanks for the heads up.

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  • txstardust
    txstardust Member Posts: 599
    edited October 2009

    Watch out for dropping shoes!  Yeah, I spoke too soon.  I started to get a RAGING headache that Tylenol won't even touch about an hour after my last post.  I tried an ice pack, a quiet dark room, nothing works (still have the headache).  I started getting a twinge of nausea, and popped the compazine.  Then an hour later, there came my soup from lunch.  I must admit, I felt better after the upchuck episode, but the nausea is still nagging.  Compazine ain't gonna cut it.  Thankfully, that's the only episode of vomiting I've experienced.  I truly hope tomorrow is a better day.  I just tried a bit of applesauce because I figured I should have something in my stomach before I take another pill.

    Sounds like now's the time for hair issues for a lot of us.  I'm wavering between leaving my hair as-is until it starts coming out, and just chopping it all off.  I'm scheduled for the LGFB class on Sunday (hope I'm feeling well enough to go), so I've decided to wait until at least then.  For those who have gone "under the scissors", I'm glad you feel a sense of power and control at this time when we can feel so powerless.  So important.

    OK, I'm gonna try to get some sleep.  I see on our original post that jenny-ny has her first treatment tomorrow - good luck to you!

    Peace,

    Shelby 

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Shelby, you started treatment 2+ weeks after me. You are getting a different regimen but I still think you have 2 more weeks to think and plan for hair-loss.....

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  • Hopbird
    Hopbird Member Posts: 387
    edited October 2009

    Hi all..

    Shelby....darn that other shoe!  Hope today is better.

    Onty....yep, that thing in doctors offices.  Someone asked how much I wait.  I can expect to wait 1/2 hour before EACH thing at a minimum....1/2 hour before they do bloodwork, 1/2 hour to see the doc, 1/2 hour to go into infusion, and then wait while the drugs are prepared.  Honestly, waiting is how I spend MOST of my day.  I wish my facility could do something about that, but as my husband says, the place is busy, people are busy, and it just takes awhile.  In the chemo area, they also double and triple check everything, which I can't complain about.   For instance, when the drug arrives they have two people check it together against my order and my bracelet.  Overkill...maybe...but I understand what they are taking great lengths to avoid (giving the drug to the wrong person) and I guess I'm willing to put up with it, inconvenient though it is.

    Onty......a 3?  That's about where I had mine cut to, I think...maybe a little shorter on the sides.  It did feel better, and gave me and my family a chance to get used to what I will look like without my familiar full crop of hair.  My sons liked the short hair, although they have been less excited about the "gaps" that have appeared in it since.  I have started wearing a little cotton cap around the house...very comfy, contains those "fallouts" and keeps me from scaring people that come to the door or kids friends that walk in.   

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  • txstardust
    txstardust Member Posts: 599
    edited October 2009

    I guess I was lucky, I didn't have to wait terribly long.  That can be frustrating, Hopbird.  It's sad that there are so many people that need it...

    I finally got to sleep about midnight last night, and when I woke up this morning the headache and nausea were blessedly gone.  I ate some applesauce for breakfast, and seem to be holding up pretty well.  I am tired, though, and glad I can stay home and not do much today - just some homework.  

    Hope y'all are feeling well today!

    Peace... 

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Hopbird,

    You may want to ask your doctor's office staff to schedule you early in the day. Every doctor's office has unforeseen issues and delays every day. They tend to stack up as the day goes by. If they still have delays maybe they are just really disorganized!

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  • valeriekd
    valeriekd Member Posts: 287
    edited October 2009

    Hi Everyone, Day#7 post first treatment, Cramping and some weakness but  am going to try and work for the next 2 weeks prior to the second tx on 10/29.

    Sounds like most people feel better after the 2nd tx?

    I got the hair thing going on also. My hair is past shoulder length and looks awful short but I'll cut it to avoid weird scalp feelings and hair loss shock.

    Hey, can people order wigs w/o trying them on  o r is this ill-advised? I have a big head - I'd hate to keep feel like I was losing it. (Literally I mean) Thanks for response - Valerie

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  • MarieK
    MarieK Member Posts: 911
    edited October 2009

    Hi All!

    Day 11 post first TX of FEC for me.  Today I woke up feeling good - just a bit of lower back pain but that could be PMS. Can't wait for that to stop - one of the good SEs of chemo!

    My hair is dry and still behaving itself style wise but I've noticed over the last few days more fallen strands that usual.  My hair - in the nether regions - must be falling out faster because today I noticed a bald patch.  Very weird!

    I'm going tomorrow to have my head shaved and my wig fitted and trimmed.  I must remember to wear make-up because that really makes a difference when you wear your wig.  Especially the eyebrow pencil.

     Valerikd - I ordered a couple of wigs online.  Just follow the measuring instructions and it should fit you fine.  My head is kind of big too and when my wigs arrived they felt tight and slipped around a lot on my hair but without my hair and a bit of tape I'm sure they will be fine.

    These two are my favourites so far:

    I KNOW they are so different and they are NOT like my real hair at all! 

    I have a lunch date tomorrow (after the hair stuff) and a dinner party on Saturday where I will be modelling my new wigs.  I'm a bit scared but excited too.

    I want to have fun and CONTROL over this part of my BC experience.

    It's funny but I feel like I have to make the most of this time before my next treatment.  My next one is on October 26th and I'm more prepared for it now - went costume shopping with my son yesterday and picked up my halloween candy already.

    I'm actually consdiering answering the door with my bald head and makeup shadows under my eyes - Uncle Fester like.  Do you think that would be too scary for the kids?

    Enjoy your day!

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  • MarieK
    MarieK Member Posts: 911
    edited October 2009

    Here's a tip for wig shopping online - put your finger over the manequin's face to really look at the hair. 

    Also if you're computer savvy print out the wig photo and a photo of yourself in similiar sizes.  I cut out the manequin's face and then slid my photo underneath to see how it looked on me.

    The wigs I bought online from ASAP Hair Makeover (USA) and Estee's Boutique (CANADA) were a good quality synthetic product with lace tops.  They arrived fast and in padded enveolopes through the regular mail.

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  • MarieK
    MarieK Member Posts: 911
    edited October 2009

    I feel like I'm hogging this thread today.  This will be my 3rd post in a row!

    I just got the call - my onc wants to put a PICC line in and the hospital was calling to book the appt.  PICC stands for peripherally inserted central catheter (PICC or PIC line

    I've got mixed feelings about this....

    On the one hand it's good because it will be easier to infuse the chemo drugs and will save my arm veins (which are practically non-existent) from vein-burn out.

    Also no extra drugs (I was told with a port you have to take blood thinners) and as soon as I'm done chemo it will be removed - no waiting for a surgeon to remove it the IV nurse or radiologist can remove it.

    On the other hand it's more external than internal and will need weekly maintenance and care.

     Anyone else on here with a PICC line?

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  • micheleboots
    micheleboots Member Posts: 1,993
    edited October 2009

    Mariek,

    I got a PICC put in last week and so far so good.  It was an easy procedure.  Easier than getting an IV.  It tooks some time to set up but the procedure went fast.  It is at my bicepe(sorry the spelling is off),  There is a bit of tube and some other stuff hanging out as well.  They gave me a mesh band to wear over it so it won't get snagged.  I need to cover it with a plastic sleeve to shower.  I got these at the medical supply store in the hospital.  A bag of 50 cost 10$.  I have a nurse who comes to the  house once a  week and changes the dressing and flushes it out.  She will coem when ever I need her to.  She came once extra as well since there was a bit of blood/fluid in the area and I was a bit worried.  Too easy.  It can be used to take blood as well, but I  have to make an appointment to have a special trained nurse do it.  I just go to the regular lab in the Cancer Clinic to have blood taken.  That way I can go when I want. I can dash in and out quick and not pay an arm and a leg for parking.  These days I feel like the parking at the hospital will put me in the poor house...

    I was scared to have it done, since I hate stuff like that in my are.  My Dr.  strongly advised me to have it and I am glad I did.  Now those IV's won't freak me out every time I have chemo.

    Good luck

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  • Hopbird
    Hopbird Member Posts: 387
    edited October 2009

    Marie...love the wigs.  Glad you are finding ways to enjoy any part of this experience. 

    As far as Trick or Treat....MOST people won't know that you aren't wearing a plastic hair covering....if it sounds like fun, do it!

    I don't have a PICC, I have a port.  My doctor recommended it, and especially since I am having weekly infusions right now (herceptin) it made sense.  Plus I'll be doing it for a year...(again, the Herceptin part.)  The one thing I wanted to say is that I don't use blood thinners per se.  They do flush it when they use it to keep it clear and avoid clots but I can't imagine that not being an issue with anything permanently in your veins.  I don't know why your doctors like the PICC better, but just wanted to make sure you didn't misunderstand anything as you make your decision.

    About the waiting, going early IS a good idea, but I get the earliest appointment possible, which is two hours into the day.  Especially since I go every week, I'm determined to get my twelve year old on the bus.  Then it is an hour + drive to my cancer center.  AND I do it on Mondays, which I guess is a popular day but I like it because my weekends are pretty good days and I can enjoy my family, my boys' sports, etc.  There are closer places, but I put up with the drive and the waiting because I like the surgical oncologist that I started with and the fact that he and my medical oncologist and everyone collaborate.  The place where I go has access to some things that some of the facilities closer to me don't enjoy.  So.........I do the wait,  but nobody can stop me from whining about it.  :)

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  • micheleboots
    micheleboots Member Posts: 1,993
    edited October 2009

    Marie,

    My Dr. said the PICC because I am only getting 6 treatments.  She said that they only use a port for more than 8 treatments or if it is over a longer period.

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Michele, PICC sounds right for 6 treatments.

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  • one-L
    one-L Member Posts: 1,110
    edited October 2009

    Wow, I am only having 4 treatments and I am having a port put in next week.  They never mentioned another option.  I guess each med onc is different.

    I am not exactly sure when I will get my first treatment, I will call the med onc tomorrow and find out what day she wants to start.  I am just ready.

    Juannelle

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Juannelle,

    Medical oncologists routinely refer for port. Ask the doctor who is going to put it in to explain the pros/cons. With 4 chemos, I'd NOT want a port. In fact if your veins are good, you don't even need a PICC line.

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