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Starting chemo August 2014

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Comments

  • StrongEnough13
    StrongEnough13 Member Posts: 96
    edited October 2014

    OMG, did you ladies see this going around FB from TheBreastCanceSite? 3D printing a new nipple! I might have to wait the 3-5 years for that!

    Windgirl, actually, they took the football-shaped wedge of boob, including the nipple-areolar complex, during my re-excision. We tried to save the nipple, but my tumor was too close to it and the margins were not clear, so it had to go. My BS recommended taking all right from the start, so it is an option, but I wasn't ready to give it up until I had to.  

    Sandy, I must have a doppelgänger! AZ is a long way from MA, and I've been grounded here for MONTHS, having been unable to schedule any travel around surgeries and treatments.  Thank goodness I got the all clear to spend Thanksgiving with the in-laws! I'm going stir-crazy!

    I start radiation this afternoon, a little nervous, even though I know it will be a piece of cake after getting through chemo (mostly - still feeling tired & some other SE from #4).  I'll keep you posted, and I guess I need to join the fall rads board.

  • eileenpg
    eileenpg Member Posts: 431
    edited October 2014

    cassiecat=love the picture

    Justamy=Yeah for you. My MO office wrote off $900.00 of my bill. So,far I have paid over $6000.00 in bills. I have good insurance but, not good enough. I have to change insurance in Nov. New premium Tah Dah!!!! $700/month. Will check out address of poor house as I will be moving there soon.

    I am still experiencing trouble eating. NOTHING TASTE GOOD. I have been forcing myself to eat. Scrambles eggs are basically it now. I have eaten over 16 eggs in 1 weeks. They do not draw blood for cholesterol. Thank god!

    Hope=On ward to new adventure. Another opportunity to excel in life. Radiation. That is what my boyfriend told me when I started chemo.  Today don't feel like I'm excelling

    Sandy+ good luck with tomorrow

    Kellogg=I'm a nurse and I try not to make them crazy at chemo. However, I ask every time when the scales were professionally calibrated. I'm picky about where I sit and I bring all this stuff with me. I touch nothing.  I also get super dressed up for chemo.  They pretty much leave me alone.

    If anyone has thought on food please let me know. I pretty hungry at night. 

    Thanks and good luck to all.

  • justamy
    justamy Member Posts: 296
    edited October 2014

    Just an update.... Really not much has changed. I'm so weak and can't eat and have the big D despite the new prescription meds. I finally am drinking the ensure that they give you during every chemo. I hate it but I have to have some calories. My husband's work is putting on a big dinner for me Thursday and having a raffle and giving us the proceeds. I hope I'm well enough to go. I so hate being down and having to be waited on. I wonder if my body can take 3 more treatments? Sad and a downer...sorry ladies. Hope you all are doing well.

  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited October 2014

    Amy you can do it.  One day at a time.  Look at the Scripture verse you posted in your profile.  God made each day 24 hours because I believe He knew that we couldn't handle 25!  Love, Jean 

  • CassieCat
    CassieCat Member Posts: 863
    edited October 2014

    Take things one hour at a time, if you have to Amy.  But keep on going.  You can do this. I'm so glad for you that the financial stuff is working out for you.

    Eileenpg, I wish I had some good food suggestions for you.  Does anything appeal in terms of salty, sweet, acidic, etc?

    StrongEnough, good luck with the radiation and let us know how it goes.  I've got it in my future, too, though not until next year (after surgery).

    Sandy, I'll be hoping for good blood counts and that your cold symptoms subside! My platelets don't seem to bounce back quite so well, and I worry that one of these times I'll get delayed.  I hope not, and I hope you don't either!

    Bippy, I'm dreading #4 this Thursday. It's hard to think I'm only half way done, and yet I'm half way done!  It's just hard, period, knowing what we're in for as each round comes up.  3 more... I can do this.

    Thank you for letting me share my daughter's photo.  I'm very proud of the young lady she is. :) I've been having a hard time feeling "up" and chipper lately, which is such a waste of these last few good days.  But I'm really dreading going in for the next infusion, and knowing that I still have two more after this one. A couple of people were surprised that knowing my great ultrasound results didn't somehow make this all easier to go through. Of course I'm glad to know that it's working, but it doesn't make it any easier physically, and it doesn't bring back the things I've lost in the process, and it doesn't change the fact that I still have surgery and radiation to get through.  Yes, yes, yes I am absolutely glad it's working.  But it doesn't make it "easier".  {vent over}

  • Gatomal
    Gatomal Member Posts: 418
    edited October 2014

    @$!

    Let's see, 12 taxols to go, with an interruption for a csection to deliver twins( who are doing fine, btw @ 26 wks and 2 lbs each so far) 

    Then c section recovery, finish chemo, then some imaging so maybe I can determine if there is any cancer in my other breast or anywhere else, then lumpectomy, then radiation x33 or so. So "NO, WE ARE NOWHERE NEAR THE HOMESTRETCH!"

    I know she is going to want to come and see the babies too after they are born, but we have a two bedroom apt in SF and my mother is already sleeping in one with the twin girls and all my MIL does is expect to be waited on, never lifts a finger. After my last csection, she and my FIL came four days after me and my NICU twins were released and she let me get out of bed to prepare a cheese plate for her while they had cocktails. The pain meds made me do it! But this time, no one is allowed until after my treatment is over. It's going to be a big hullabaloo, I'm sure. Sorry, but it felt good to rant, especially the all caps part!

  • justamy
    justamy Member Posts: 296
    edited October 2014

    Gatomal: glad the babies are doing great. I think of you and pray for you often. You are right You have to take care of yourself. You might want to talk to your husband and have him talk to the MIL. Its beyond ridiculous for her to think she can come there and have you wait on her! My Christmas has to be on my terms this. Which means I will stay home on Christmas day ( have my last chemo the day after). If people get mad so be it. My little Christmas is nothing compared to what you will be going through but the idea is the same. Its time for those who love us to cater to us for once. Be good to yourself and those babies. Hugs Amy

  • eileenpg
    eileenpg Member Posts: 431
    edited October 2014

    Gotomal+ I will come take care of your babies. I love SF. Right after my radiation. Or I could just come and tell your MIL what she needs to be doing. First on list  Stay at hotel!!!

    I love to hear everyone rant. I try to stay upbeat all the time. I feel if I complain nobody wants to hear it. 

    Cssiecat=my mouth is a little better tonight. 7 days post chemo. I am trying tangerine popsicle, Today I ate some fries which I love heavy layered in ketchup. Scrambled eggs lunch and dinner mixed with strong cheese.  I DREAD round 5. Don't think I will make 6 rounds. Counts very low today. This chemo round has been tough for me. Super fatigued.

    Radiation has to be easier than this. So,I'm ready 6 1/2 weeks 5 days a week. Start in mid Dec.

    Happy thoughts everyone

  • Kellya
    Kellya Member Posts: 159
    edited October 2014

    Kellogg, I don't have my mom come to treatments either. She'd be wanting to see the blood work and worrying. I just want to chat with my friends and make the time pass without worries!

    Sandy, good luck tomorrow! I hope your counts are good, but if not, just rest and maybe they can recheck you thursday?

    Strong, hope the radiation went well! Mine will start in February.

    Eileen, man I can't believe you still can't eat! Do they give you any tips? Is it the egg you like or is it breakfast? Thinking about pancakes? What about soups? Did you have a favorite before all this? I wonder if it would taste good to you now? How are you with Mac n cheese or Alfredo? Do you like grilled cheese? Just trying to think of things that might be easy on your tummy or eyes.  Good luck!

    Jean, love that!

    Justamy, don't feel like you are a downer, it can only get better, keep that chin up. Glad the financial things went your way! See that's a bright side 😉

    Cassiecat, my platelets are real low too, not sure what that means, but they let me go today. I didn't catch the number. I will get the printout next week and see.

    Gatomol, you HAVE to do what's best for you and if that means your MILstaying in a hotel, tell her. Your mom is there with you now and helping, she will be there when you deliver. If your MIL doesn't understand, have your husband talk to her. My daughter had twins, I stayed at the house, one MIL, the easy going one stayed a few days. But my daughter and twins were in hospital for 5 days, so that was different. The Mil who is high maintenance, her hubbies parents are divorced, did not come til much later. You really have to think of what is best for you and not feel bad about it!! 😘

    I had treatment 2 of 12 of taxol today took longer, had the back pain again and so they slowed the drip down which took the pain away. But took a little longer, luckily I had another good friend with me to pass the time. They delivered little ham sandwiches, Cheetos and chocolate pudding cups. They do this on the week of a holiday which is nice. So I'm done til monday, will probably have my crash on Wednesday again. No neuropathy yet. Next week I just have blood work, no dr. Appt so will just got o chemo after the labs.

    I am half way through in terms of weeks, 10 down out of 20! 10 more taxol! 

    WE CAN DO THIS!

  • Hope50
    Hope50 Member Posts: 76
    edited October 2014

    Let me just say, I love you ladies.  What a special group of people fighting a wicked battle.  You all are amazing and each has their own story, own struggles, and still come here to care and help,others.  What a blessing you all are to me and others.  

    So thank you each and everyone!

    Today I had a CT scan of my abdomen.  Tomorrow I go in for th mold and tattoos to begin radiation.  To be honest I'm a little anxious.  I was really hoping for a week of no poking or prodding but that's not happening.  I feel guilty for even saying anything because I'm now done with chemo (not the SD's) but finished!! I am so happy about that but still tired etc and nervous about the whole radiation process.  I know it has to be much easier than the chemo. I won't complain just needed to share my anxiety.

    Hope you all have a good nights rest.  That is one thing I have struggled with is sleep.  Hopefully that will get better.

    Thanks again all for being a blessing to me.

  • Gatomal
    Gatomal Member Posts: 418
    edited October 2014

    thanks justamy. Yes we are doing things on our terms this year for sure! You've had such a rough road recently, glad you got some $ good news at least. We should all he t to just stay put when we want to. Thanks for everyone for their support re: MIL. She DOES stay in a hotel, but comes with her husband at 7:45am and leaves at 9pm when their hotel is down the street! Even when asked to come later. Yes, hubby is taking care of this, and if it isnt done so everyone is clear on the guidelines, I'll write an email and send it from his acct! I would let him read it first, of course. 

    I think everyone needs to vent more now, as the shock wears off and we are all getting deeper into treatment ( that seems to stretch on forever!) 

    Hugs and strength and here's to doing things on OUR terms this year!

  • ladyb1234
    ladyb1234 Member Posts: 1,239
    edited October 2014

    Eileen: after my appt last week with my MO I have
    resigned to the fact that food will not taste good until weeks after Taxol has
    ended, which is currently tracking mid-January.
    Uggh. MO did tell me that the GI issues would not be as bad on Taxol as they are with ACl so my appetite should pick up. I am now almost 30lbs down from when I started.  I am not
    sure what to suggest for food, but can tell you my routine.  I have to change it up continuously to determine what
    settles well and then I stay with that regimen until my body rejects it and I
    have to start all over. I stay within the
    BRAT diet and find that toasted bread and hot/warm cererals tend to work the
    best for me such as grits, cream of wheat, and malt-o-meal. Oatmeal and scrambled eggs just completely turns
    me off. However fried eggs hard and boiled eggs tend to work … go figure.  I also drink ensure daily as it seems to coat my stomach.  At times my body craves a particular taste such as salty, acidic, etc.  and I go for it :-).  

    I hope your taste and appetite comes back soon.

  • ladyb1234
    ladyb1234 Member Posts: 1,239
    edited October 2014

    Bippy: glad to hear that you are doing well and that
    you are able to work on your Ebay store.
    Isn’t it great when we can do some of our normal routine where we have fun?

    Cassie: your daughter is beautiful and looks so eloquent. I know you are one proud momma (big smile). My daughters (and son) are my heart.

    Hope: I am saying
    congrats, congrats, congrats and doing the happy dance for you too. I am dancing
    quite often over these last few weeks, which is a good thing. Keep us updated on the radiation progress.

    JustAmy: Yes you
    can do it. Ditto Cassie, take it one day
    or even one hour at a time if needed. We
    are here for you. The ensure helps me tremendously
    with my GI issues and is my go to when I really just can’t eat. Awesome that
    your husband’s work is having a raffle and dinner and such a wonderful support
    group. How many overall treatments to
    you have?

    Gatomel: So good that you and the babies are doing
    well. I ditto everyone else’s input on
    the MIL. It is not her time and I would
    say hotel it is and don’t ring the doorbell before Noon unless you are here to
    help.

    Sandy: hope you
    are feeling better and that you get your treatment tomorrow.

    Strongenough: yes you got this. Keep us posted. 

  • eileenpg
    eileenpg Member Posts: 431
    edited October 2014

    My eating issues for those who wrote are the HORRIBLE taste. Everything I put in my mouth taste like coated plaster. I have that taste all the time. My mouth feels like it is full of copper pennies. At this point scrambles eggs are manageable(still pretty horrible). Fruit taste terrible. Coffee is so bad I cannot swallow. I am now taking one bit of something and pretty much can't stand the taste. My MO nurse who also had chemo, today told me just to force myself to eat. She said she had the same problem. Anything with a spice I end up with the big D. When my Mom had chemo many years ago I remember eating lunch with her and she was spitting out the food saying it taste horrible. I now know what she meant. It is like I taste the chemo coming out of my taste buds and membranes in my mouth.UGH!!!

    This is the worse side effect I get. I am using biotene toothpaste and mouthwash. I DREAD 2 more chemos. My house is full of food I thought would taste good and now can't  eat due to the horrible taste in my mouth when I bit into it. 

    Thanks for everyone suggestions. Hopefully,each day it will get a little better until Round 5. Then start all over again.

  • StrongEnough13
    StrongEnough13 Member Posts: 96
    edited October 2014

    Eileen, when nothing tastes good, I just drink Boost. I had horrible metal mouth after round 3. Eggs, cheesy white things (potato, rice, noodles), toast, milk, and peanut butter were about the only things that usually tasted ok to me. But even the milk & peanut butter tasted off that 3rd round. I did find if I rinsed with biotene before eating it was a little less bad. 

    Radiation went fine today, doesn't seem like it will be much of a big deal, just the every day for 7 weeks will be a hassle. The tech said I won't start to burn or itch or anything for 2-3 weeks. I get a little anxious at first going into the tube, you know, when they tell you to breathe normally, you forget how to breathe altogether! It takes a few minutes to relax and catch my breath without panting & messing up the whole thing. Maybe that will get better over time. It was about 10 minutes start to finish. I will be seeing the RO every Tuesday, I guess to check for SE. 

    Hope everyone is doing well & sleeping peacefully! G'night.

  • justamy
    justamy Member Posts: 296
    edited October 2014

    Well tonight went downhill and I am now in ER and have to ride in an ambulance an hour to the larger hospital where my MO is...I still had D, was puking and my fever went up to 102 so I called MO and they sent me to the ER in the town where I live. They found that I have a very impressive UTI (oh joy) and that my WBC is down from 24000 a week ago to .7. So I have to be hospitalized. At least they know why I feel so bad and can fix it! Next chemo they will not skip the Neulasta shot. Looks like I need it! I feel physically ikky but much more hopeful. Hope you all are sleeping soundly right now and have few to no SE's.

  • eileenpg
    eileenpg Member Posts: 431
    edited October 2014

    OH NO JUSTAMY!!!!!!!!!!!!!!!!!!!! FEEL BETTER

    STRONG ENOUGH=Thanks for the advise

  • Hope50
    Hope50 Member Posts: 76
    edited October 2014

    Bless your heart justamy.  Glad they found the reason causing the problem.  Sorry you have to be hospitalized, but they will get you taken care of. Hang in there.  Feel better. Prayers and hugs coming your way.

  • Kellya
    Kellya Member Posts: 159
    edited October 2014

    Justamy, how scary! They at least will get you fixed up! Take care. Does your hospital have the capability of doing your treatment there? My dad was admitted and treated in the hospital while he recovered. May be a question to ask them.

  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited October 2014

    Amy, I had 2 uti's during my A/C.  The good news,is that you start feeling better quickly once they have you on an antibiotic.  So sorry you had to be hospitized but hope you feel better soon.  Love, Jean 

  • justamy
    justamy Member Posts: 296
    edited October 2014

    Thanks everyone. I don't have another treatment for over 2 weeks but if they needed to do chemo, they can. The hospital is just a skywalk away from the infusion center. I have gotten 4 antibiotics already and haven't even seen the doc yet. They said I'll get a nuelasta shot today among other things...the worst part is I haven't slept yet... I'm so tired but you can never sleep in the hospital...thanks for all your prayers. Hugs Amy

  • Kellogg2006
    Kellogg2006 Member Posts: 159
    edited October 2014

    oh Amy...  Thoughts and prayers to you. I hope you feel better soon. 

  • Gatomal
    Gatomal Member Posts: 418
    edited October 2014

    justAmy...we are all praying for you and following your progress. I'm glad you are in the hospital where they can get all these symptoms under control. If you use Claritin for nuelasta pain make sure you ask for that too, or have someone smuggle it in for you! 

  • Beatmon
    Beatmon Member Posts: 617
    edited October 2014

    Justamy: hope you feel better soon.

    I had ct scan and MUGA yesterday. My ejection % stayed up to  65% . Very pleased. About that. The cat scan of the lungs was read as improved, some of the the tiny places have completely disappeared. See onco on Wed. On Wed. And see how he interprets in, '

    .."

    " 

  • Bippy625
    Bippy625 Member Posts: 602
    edited October 2014

    ditto to the get wells justamy!  It sucks, but i am sure you will feel better soon. Make sure DH brings you some good food, and eat whatever you want.... I detest the smell of hospital food, cannot eat it. Association with the worst SE has made it so.  Bust outta there soon!

    Countdown to #5.....gettin ready with chores, food preps, and hobby stuff, just in case it is horrid. I am scared as last time it was easy for me.  Maybe this one will be good too?  Hope so, for us all!  

    Cassie I do totally relate to your post and am so glad you are lump free now!  yes, but we know, it ain't over. 

    DH and I are out today while the wellness lasts, collecting for Ebay. It is like treasure hunting!  We never had children, so sorting through these clothes is really fun -- they are so darn cute!  If I had any eggs left, they would be clamoring for release :)

  • pangtidor
    pangtidor Member Posts: 121
    edited October 2014

    ohhh justamy sorry to hear about your UTI. Hope you feel better soon. 

    I'm being paranoid with the germs and possible infection. I don't go out within 7 days post chemo. I wear mask at work if I have to get out from my room. I have to sleep alone in another room and isolated myself when one of my kid sick.

    Eileen I feel for you. Mouth full of copper pennies is the perfect term!! I will eat as much as I could as soon as I had chemo to day 1-2 post chemo. Day 2-6 post chemo is horrible for my taste buds. Sometimes, the smell of the food will just makes me nauseated. Soup, Bananas and crackers don't help me anymore, I just drink milkshake and have some ice cream or sorbet. I know they are full of sugar that feed the cancer cell but I need calorie. Oh cold fresh homemade lemonade is great too!!!

    Day 8 post chemo, finally feel better. Will eat more to cover the calorie I lost on my hell days.

    Gatomal thinking of you and your babies!! 

    Stay strong ladies. Hugs to you all

    Shirley 

  • CassieCat
    CassieCat Member Posts: 863
    edited October 2014

    Justamy I'm thinking about you and hoping the stay is brief and that the antibiotics and Neulasta both help out a ton.

    Eileen, your taste buds sound terrible. :(  I'm so sorry.  I have a period of about a week where stuff tastes off - coffee is bitter, that sort of thing - but it passes.

    Beatmon, it sounds like things went well if I'm understanding you correctly!

    StrongEnough, thanks for the report on radiation.  It's good to know it went alright!

    I walked about 3.3 miles today with Hope.  After acknowledging that I've been feeling pretty down, I figured I might as well get out there and do something healthy for myself while I am feeling up for it.  Right now, one of my cats has stolen Hope's bed, and Hope has herself squeezed into a cat bed.  Crazy pets. :)

  • thinkpink4ever
    thinkpink4ever Member Posts: 83
    edited October 2014

    Praying for you, Amy!!!  Stay encouraged....


     

  • CJT511
    CJT511 Member Posts: 65
    edited October 2014

    I am thrilled that I have survived my 2nd Taxol TX without incidence!!!  Therefore, I can stop taking that bloody Decadron that has been wrecking havoc with my blood sugars.  As we know, diabetes (which I have a high family history of on both sides) is a risk factor of BRCA.  In April and before I was diagnosed with BRCA, my PCP had me go on a low carb diet to keep me off of diabetic meds (pre-diabetic) and to increase my exercise. Then this lovely diagnosis occurred and the blood sugars were all over the place due to Decadron.  So I'm anxious to see if coming off of Decadron if my blood sugars will be better controlled and the fact that I've lost 30#s since April between the low carb diet and TX.  Of course, if I would just push myself more and get off my butt, this should help on all levels!!!  

    Hope everyone is hanging in there.  We will defeat this sucker!!!  We're too good to let that happen!

  • justamy
    justamy Member Posts: 296
    edited October 2014

    Congrats CJT! Sounds like you are doing great!

    Update: not much better is new. I will prob be here till Friday. The D has seemed to stop which is awesome after 10 days of it! Got the nuelasta shot and am on Norco for bone pain...my fever has dropped....getting better a bit at a time :)

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