Sept 2012 chemo

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  • bearcub
    bearcub Member Posts: 485
    edited November 2012

    Waitingfor, the reason we are weighted before each chemo is so we can get the precise dose of AC, mine was made up each time. I was told this and had my 2 last doses reduced as my WBC would not be able to handle a full dose. I don't understand why everyone would get so pissed at you, they should have reduced the dose for a 9 lb. weight loss.

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  • bearcub
    bearcub Member Posts: 485
    edited November 2012

    Mariposa and Queen Kong, I hope you start to feel better soon.

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  • jojo2373
    jojo2373 Member Posts: 662
    edited November 2012

    So sad to see my dear friends here feeling bad, Queen and Mariposa hoping your better soon.  

    Anyone can vent and write all they want here - it's the one safe place.  So go Mariposa!

    Cherioo and all - I totally am there with you regarding the DH's attitude.  Yesterday I was just angry - all day.  No one seems to appreciate that comes with this territory and though I keep it bottled up most times, sometimes it just explodes.  

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  • Waitingforthenextstep
    Waitingforthenextstep Member Posts: 251
    edited November 2012

    Mariposa

               I enjoy reading your posts and insights. I stopped reading that stuff after that link that got posted here.  We are each unique, don't forget about the survivors, they exist too.  I was watching Dallas Cowboy Cheerleaders on tv, and a whole platoon of women came of the field carrying a huge banner for bc awareness.  They were all ages, I envied their peppyness.  I can't wait to feel that way again.  You will too.

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  • allurbaddayswillend
    allurbaddayswillend Member Posts: 355
    edited November 2012

    ok, here I go vying with mariposa for longest post ever... :)

    Waitingforthenextstep, I lost about the same amount of weight (9-10 lbs) on my 3rd AC. I don't know if my dose for the 4th was recalculated or not after that. I do know that my Dr was recalculating steroids and pre-meds based on my tolerance (or not) of treatments and always does a whole sheet of dosages so it's possible. In fact, he reduced the steroids for me over time and that actually helped lessen stomach and gut pain for me, so what works for some (increasing steroids) doesn't work for others like in my case. Also, it turned out I am intolerant to the intravenous Pepcid! How often does that happen? not often according to my MO.   *It sounds like the arguing over your dosage within earshot of you was very unprofessional and if the facility is small then they better figure out where to go to have that conversation. It would be worth mentioning to a Dr or the administrator there (in a diplomatic way of course, esp if you are continuing treatment there) that debates like that should happen and be resolved out of earshot, the Dr would be the last word on that. My chemo is prepped at a pharmacy in the same bldg the same morning that I come in for treatment but if your facility doesn't have its own pharmacy, is it possible they have to pre-order the drugs?   and yes, queenkong is right, you should not be vomiting. There are tons of meds for that. My fave during AC was one I rubbed into my wrists (or the big veins behind my knees) and it's called promethazine. I haven't needed it as much on Taxol but some. I almost never took the pill for antinausea because it hurt my stomach. and the Dr did give me Emend intravenously with the AC but I think only with the first Taxol since I haven't seen it on the bills since.

    omg butterfly, and toastie, AND Jojo, AND Mariposa too?!?!? My husband, early on in chemo, told me I better "toughen up." WTF? He picked fights with me a few times too but it was obviously irrational behavior on *his* part. I mean, who in their right mind picks a fight with a chemo patient lying sick in bed? really! So I got him to promise to just hold it in or deal with his stress some othr way which he has done.  Although this morning he said, "So after your last treatment you're going to lay off the sugar, right?" (not that bad but he could have put it a bit sweeter considering I spent most of yesterday in bed due to pain and fatigue) and I ended up very sad and crying and wondering WTF he thinks I eat. I already felt crappy but now it's directed at him which isn't right either. F&&K!!! yesterday I could barely eat anything and instead of giving in to the sweet tooth even though that's the easiest and only stuff I can taste right now, I ate applesauce and half a frozen tamale for lunch and the other half for dinner followed by more applesauce (no-sugar applesauce even!). I think because I had one cookie (one modest fricking cookie) with my tea in the morning so I could stomach my Celebrex, he thinks I'm eating cookies all day or something? So CLUELESS as to how awful we feel and they won't know unless they ever have to go thru it themselves so I just hope we (he and I)  make it through this...

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  • allurbaddayswillend
    allurbaddayswillend Member Posts: 355
    edited November 2012

    Jojo, I will definitely be staying in touch here. I just thought I best start checking out the radiation thread too. But no one knows like we know what we have been through, right?

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  • patriciahurtado
    patriciahurtado Member Posts: 489
    edited November 2012

    Good morning my beautiful sister !!!!! I'm so sorry that some of us are having such bad SE ...... I'll keep you in prayers...... Drink lots of fluids!!!!



    Regarding DH of ours I feel like it was their crazy weekend cause mine was a little snappy ... Or is it just us so sensitive .... F&$@$& chemo!!!! He did clean the house while I was in my bedroom crying over something he said... Really it wasn't that bad but at the moment it was...he cooked and he apologize he said that he is really trying to understand all this....



    I'm really looking forward to my last red evil this week..... And nervous about taxol ....



    Mariposa vent vent vent!!!!



    Have a great Sunday!!!!

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  • QueenKong
    QueenKong Member Posts: 154
    edited November 2012

    Mariposa, you go ahead and write. I'm so sick this is one of the few things I can do right now so I'm reading all these posts. It's kind of yoou to respond to so many of us. This is a chat forum so chat away. I like it. I have a hard time reading back & sometimes I take so long I lose what I write so I sometimes post more than once or edut. I hope no one minds.

    I hope Waitingfor has an easier time with the next round. I was thinking about you/her last night before I went to bed and how hard that must be. I've had two vomiting episodes and they were so hard.

    I am living with my parents while I go through chemo so my mom can help with my young daughter. It's not an ideal situation for me, especially with me so sick. The house is very small & I sleep in the cellar where there is no bathroom. My DH is here now visiting and he has been away from us most of the time fixing our house, working to pay bills & to keep the insurance rolling. He often doesn't understand about the side effects and all the issues and does some of the most idiotic things sometimes. I get upset. He seems to be trying more now. He got me a special list from the grocery store last night; the bananas (as the new girl Hope advised) and yogurt I wanted. It's hard being away from home. I want to go back and my mother is angry about it. I have access to such better doctors in the city. 

    Someone mentioned they sent their DH articles about side effects. That's a good idea along with some well chosen articles about care taking esp with kids.  We need people to be nice to us when we're so sick.

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  • Joemommy
    Joemommy Member Posts: 31
    edited November 2012

    I'm having such a rough time. May I join in the venting? Lol. I don't have a husband to complain about - maybe I should be glad. Haha Actually this has been so hard - I'm a single mom to my four-year-old son. His father has yet to pay a dime for child support and is out of the picture. I have no family to speak of. I've had to continue to work full-time to care for my son and myself. The few days following treatment I enlist the help of friends to watch my son. But I've been getting through it.... barely. Then last week on day 5 after treatment when I was still feeling awful I come home from work and my beloved dog of over 13 years doesn't get up to greet us. He was laying in the floor shaking and could barely lift his head. He's a golden retriever but I was finally able to half carry him to the car to go to the emergency vet. Of course I had to take my little boy too. Anyway, turns out he has a huge mass near the anal glands. The doctor is saying in front of my son how it is 99% cancer - my poor son having to hear that damn word again but now about our dog. Anyway, went to our regular vet - he's positive it's cancer but did a biopsy and blood work - basically my dog has just a matter of weeks left because of how rapidly the tumor is growing and the only thing that can be done is give him lots of medication and make sure he doesn't suffer. The vet told me what to watch for to know it is "time." My heart is broken and I can't even imagine how I'm gonna explain it to my son. How unfair to have his mommy sick and then lose his dog to this horrible thing called cancer. I honestly don't know how much more I can take. Thank you for listening - just needed to get it out!!!

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  • butterfly14
    butterfly14 Member Posts: 253
    edited November 2012

    Joemommy - I am so sorry about your puppy, they are like family. I know I still miss my black lab baby that passed away last year. I hate cancer.....

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  • QueenKong
    QueenKong Member Posts: 154
    edited November 2012

    JoeMommy, Sorry to hear the sad news about your beloved family pet. Poor dog. I don't have a dog but when my two old cats died it was very hard. My child was 4 too. One thing we did that I know helped is that we took some pics and then we wrote a list of all the good things about the cats when we had a mini funeral and talked out the animal when we buried it from the list. We had mini gravestones made. They died very close together. She still remembers that. You also need to explain where they go after according to your belief system. I commend you for still working while you go through everything and care for your child. 

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  • Waitingforthenextstep
    Waitingforthenextstep Member Posts: 251
    edited November 2012

    Joemommy

          Sorry you dont feel well, I join you in solidarity, had my 4th AC last Thursday.  I feel just awful. How do we keep going?  I feel like crying.  Normally, I would be all excited about Thanksgiving, but now I am wondering if I can stay awake the whole night.  It's like now we have this, and it colors everything else.  Sorry you are grieving for your pet dog. I've wanted to get a dog for awhile, but now's not the time.  This treatment seems like it will go on forever.  I wish I could see the end of the tunnel. 

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  • Mariposa123
    Mariposa123 Member Posts: 267
    edited November 2012

    Joemommy:   I am so sorry to hear about your dog!  Your poor son!  How is he doing?  I can imagine that all of this is so hard for him, and you.  You are right, this is totally unfair.  How do you help him prepare for this loss, and at the same time know that you are doing everything in your power to have a very different outcome with your cancer.  I give you both huge virtual hugs!  As I was saying once before, I have a six year old and a three year old- and although my DH could do more around here, it would be so hard without the extra help.   You deserve so much credit for managing all of this by yourself.  My heart goes out to you.


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  • Timbek2
    Timbek2 Member Posts: 204
    edited November 2012

    My heart goes out to everyone!  For those physically struggling I am praying for complete healing and relief from the horrid side effects.   So sorry to hear about the pet.  I don't know how you manage on your own right now.  Shows how strong you are!  You are a wonderful mother for your son.  Terrible that cancer rears its ugly head again.  I hope for a day where cancer is a disease of the past!  I would not wish this treatment on anyone.  I agree that the holidays are somewhat diminished in all this.  It's just not the same when you don't feel like yourself.  Sorry that your husbands are struggling too.  It affects everyone for sure.  A friend I haven't seen in months visited yesterday and then took our picture together.  I feel like everyone wants to pay their respects to visit the cancer lady and check me out.  At my luncheon last week they wanted me to shed my wig to see my bald head.  I didn't care.  This is who I am for now.  Nothing I can do to change it.  I ate a McDonald's cheeseburger for lunch and it tasted so good!  I try to eat so healthy but miss chips and soda and all the no no's.  I never have been big on alcohol but we usually would have some slushie at the holiday and I doubt I will have any.  It would probably knock me out.  I fell asleep at 9:30 last night.  I was so wiped out.  Sometimes I think I could sleep forever!  But can't!!  My daughter has been extra emotional lately.  It makes us all crazy her crying like that day in and out.  I just tried to give her a big hug.  Who knows what is going on in their minds.  It's all so scary.  I asked my kids who wants to go to chemo this Friday.  I will be in chemo while the rest of the U.S. is out shopping and having fun.  It stinks!  I've never been a big Black Friday shopper but anything would be more fun than chemo at this point I think.  So this is my rant!  It's good for us to do this.  To share the ups and downs.  Right now the tunnel seems so far away but I am thankful to be done with AC and that was my first step so we are making progress.  I can't even think about rads yet as I won't finish chemo til end of January.  By Christmas I should be able to see the light at the end of the tunnel.  My birthday is in May so my goal is to be me again my then!  I will be so happy to celebrate turning 41!  Hang in there all.  When you are frustrated and angry come here.  We support each one of you and I am praying for all of us.  For a future filled with joy and health!  Love and thanksgiving blessings!

    Becki :)

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  • jojo2373
    jojo2373 Member Posts: 662
    edited November 2012

    Becki, i too will be having chemo on black Friday! Hugs to everyone, your vents help make me feel normal.

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  • Hopex3
    Hopex3 Member Posts: 397
    edited November 2012

    Joe mommy: so sorry to hear about your struggles and your dog. It's hard to lose a

    Pet that has been a loyal friend.



    Mariposa: you go girl! Vent away. We all understand.



    Butterfly14: I just started taxol last week. My eyebrows are itching which I guess is a sign. I don't want to lose them. Also don't want to lose my eyelashes either cause I don't think I could put false ones on. Maybe they will just thin.



    Here's a tip for aching feet and ankles: put them in a big bucket of hot water with Epsom salts. Feels so good. I may be able to walk today.



    Take care everyone!



    Erin

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  • Waitingforthenextstep
    Waitingforthenextstep Member Posts: 251
    edited November 2012

    Has anyone changed MO's during chemo treatment?

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  • cgesq
    cgesq Member Posts: 319
    edited November 2012

    Sorry to hear about everybody's bad weekend.  I know I speak for all of us when I say, 'I CAN'T WAIT FOR THIS F*%KING ORDEAL TO BE OVER!!!!!!!!!!!!!!!!!!!!!

    Mariposa, if you find out from Dr. Pegram what exactly he said/meant about it being better that the herceptin be given first, please post it!!!  I have been going crazy, (like Terri07-11) thinking that perhaps I could have been getting my treatments in a better order.  I actually emailed Dr. Pegram and asked him the best order but he never responded.  I had my last TCH treatment this past Weds and I directed the infusion center to give me the drugs in the HTC order, rather than TCH.  They complied, but said in their experience, it was always given in the TCH order.

    Joemommy, sorry to read about your dog.  We actually have had 2 standard poodles pass away from cancer in the past 10 years.  It may seem counter intuitive, but (if you are up to it) getting another dog quickly helped our kids deal with the loss.  At first, I resisted, thinking I could never "replace" our beloved pet, but getting another dog took their minds off the dog we lost and cheered us all up.  You might want to consider adopting an older, housebroken dog from a shelter.  They are alot less work then puppies!!

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  • QueenKong
    QueenKong Member Posts: 154
    edited November 2012

    Hi Everyone,

    It's goood to hear see the venting. **FLOWERING F-THIS AGONY**

    I'm feeling a little better. I went to the mall today in a wheel chair so I could get my kid some shoes. I can't do anything, even get up to get a glass of water with out shortness of breat and fast breathing. The wheel chair really helped. I let her get shoes I never would normally because I so ill. hey have little heels. The wheel chair made it possible. I couldn't have done it otherwise. My fever is finally down. I'll be on the phone to Rosewell in the AM so I hope they help me. Something is not right.

    I, like waitingfor, am likely going to switch my oncologist. I'm looking for someone in the NYC area as I am going to move back soon. I am likely to get my surgery there as well. I saw Dr Cody at Sloan and Debra Axelrod at NYU before I left and both were good. I have an appointment with another sugeon on Dec 3rd. I hope I am recovered enough to make it.

    All the talk of dogs makes me want to get a dog after all this is done so I can have a walking companion & a pal for my kid.

    Good luck Black Friday Chemo goers. I will be thinking of you. I will not be shopping. I'm going to try to look for some simple crafts to do with my daughter that we can make for Christmas. I also want to support local, small business and keep it small, teach my daughter about helping others somehow in the process. Craft needs to be simple for mom.

    I have zero appetite so will likely forego Thanksgiving eating.

    Hope - I still have eyebrows & eyelashes too but detect thinning, then there is the nose hair. Geez. :( I never realized how nice those are to have.

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  • jojo2373
    jojo2373 Member Posts: 662
    edited November 2012

    Queen - I actually think the nose hair was the very first to go as I have had the "drip" since right after my first AC.  It also "freaks me out" to tilt my head and be able to see straight up to my sinuses (it looks like)...lol.   Really looking forward to having something catch that drip soon.

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  • allurbaddayswillend
    allurbaddayswillend Member Posts: 355
    edited November 2012

    Joemommy, I have a friend who went through chemo twice as a single mom (widowed, no life insurance pay off.) She told me she thought it was a straight trade-off being a single mom since she didn't have to argue with a husband about how things were done, to clean up after, or argue about how to raise the children. :/ I have no idea if that would be true for you though since she also had at least some family around within an hour's drive or so. So sorry to hear about your dog. That's so tough. I actually agree about getting another dog if you can because the old dog can help "train" the new dog in the ways of the household. That's what we did a few years ago as our terrier mutt was dying of mast-cell tumors. But if you don't want advice, please ignore anything I just said, :) I'm glad we all have this place to vent as we deal with this horrible sh1t.

    I managed to get a little real food in myself for dinner last night. I hope to be able to get some grocery shopping done today for some frozen meals - this past weekend it was very frustrating that I can't just eat anything I want. I wanted fried chicken but there's no glutenfree provider nearby and there was no way I was up for cooking it. I homeschool our 10 yr old son and have been able to plan for it mostly through chemo but this week? I think I'm going to take a Holiday week! we schooled thru the Veteran's day school holidays here so I have a couple days on my schedule to play with. phwew! I foresee interesting movies on our holiday plan this week, like maybe "Much Ado About Nothing" and lighter literary fare like that, possibly "Gods and Generals" - the civil war movie. Any other suggestions?

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  • butterfly14
    butterfly14 Member Posts: 253
    edited November 2012

    Trying to figure out if its allergies or chemo, has anyone been experiencing watering eyes all day and that awful crust on their eyes in the morning? My eyelids are so sore.

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  • cgesq
    cgesq Member Posts: 319
    edited November 2012

    Butterfly,  I too had watering eyes all last week.  If you've never had it before, chances are its chemo related.  I went to my eye dr. and was told to use lubricating drops very often, which seemed strange to me considering my eyes wouldn't stop tearing.  Apparently, there are different kinds of tears, and chemo drys out the membranes which help keep the eye lubricated, so your eyes produce the tearing kind of tears.  He also prescribed some sterioid drops which I was told to use on the days the tearing was very bad.  

    OTC lubricating drops should help (they helped me alot!!)  If however, you find it doesn't resolve in a few days, go see your eye dr, because in rare cases, chemo can effect the tear ducts and that can get serious.

    Good luck.

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  • Cocobean
    Cocobean Member Posts: 135
    edited November 2012

    It sounds like its been a rough time for a lot of us. I'm sending out prays and positive thoughts to everyone. We will get through this, we will be stronger, and we will be on the other side looking back. We are getting there. I am amazed at the situations and circumstances that many of the women here are dealing with on top of having f-ing cancer...this is a TOUGH group of ladies and no one should feel bad for second if they need to vent, complain, stay in bed all day, switch docs, rip their wigs off, eat a dozen cookies in one sitting, sleep, cry, be pissed or whatever you need to do to get through another day and keep moving forward.



    cgesq and Terri- I looked back over the outline of dr. Pegrams talk and there wasn't anything in there, but I know that is what he mentioned because both myself and my mother wrote it down in our notes and talked about how we needed to ask my MO about it. I too looked online to try to get more information and really didn't find anything. I did find this place that specifically says to do H first in there order of administration. But that was all the info I could find. I also thought about emailing him to clarify. If you learn of anything else pls pass it on.



    http://www.avon.nhs.uk/aswcs-chemo/STCP/Breast 2009and2010/ASWCS10 BR021-TCH final.pdf



    My MO did seem to know about it, but didn't really seem think it made much difference, just that H and TC have a synergistic relationship, but order didn't matter. So I just asked the nurse to give me the H first because that's what dr. Pegram mentioned. I am so sorry for causing any stress or worry.

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  • Cocobean
    Cocobean Member Posts: 135
    edited November 2012

    Oh yeah, my eyes are constantly watering and my right is twitching....thanks for the info on the eye drops, hope it gives me some relief.

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  • Toastiecat
    Toastiecat Member Posts: 132
    edited November 2012

    Hi lovelies,

    Well, it looks like many of us have been put through the ringer the last few days!

    Queen, it's great that you were able to get out for a little while! Sometimes that can be a big help. I hope you didn't overexert yourself and are feeling good today.

    You mentioned that you'll get your surgery in NYC. I love my surgeon if you need a rec...

    Joemommy, I'm so sorry about your dog. :( That's such a sad and hard thing even when you're at your best, I can't imagine it on top of the chemo crap. And your son, it must be so hard for the little guy. Do you have a Gilda's Club near you? They have a program for kids called Noogieland (http://www.gildasclubnyc.org/Membership/Noogieland.html)

    Waiting, it sounds to me that you're totally within your rights to consider switching MOs. I don't know why they gave you a hard time about your dosage...they had to remix mine once because they had my height wrong. That seems like nothing compared to the weight loss you experienced. And I agree, arguing about it when you were in earshot is very unprofessional. And they shouldn't be making you feel bad about being an advocate for yourself. That's your job! I'm in NYC too...let me know if you'd like me to hunt down some MO recommendations. I like mine a lot, but there are others in the hospital that I overhear with their patients who I know I wouldn't like. (Mostly the old school male doctors, go figure.)

    Patin, yes, we are on the same schedule, I never realized that! I also have those little losses of balance you mentioned. I only get those a couple times a week, like you. It's enough to make me stand far back from the platform edge when I'm taking the subway, though! Eek. How did #9 treat you?

    I'm sorry so many of us are having issues with the husbands...though it's a little comforting to know that it's not just me. It's funny, my DH was so totally freaked out about me spending the day in bed on Saturday, but you want to know how he spent his day? On the couch playing video games. Um, looks like I wasn't the only one who hid from the world...

    Ladies, Powerball is up to $250 million. I'm going to buy a ticket, and WHEN (not if) I win, I am going to send each of you a cleaning service, personal chef, super nanny, massage therapist...and this guy:

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  • butterfly14
    butterfly14 Member Posts: 253
    edited November 2012

    cgesq - Thank you, I will try the lubricating drops. This has been going on for a couple of days, so hopefully the drops will help. Have chemo tomorrow and will mention it to my MO as well.

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  • Joemommy
    Joemommy Member Posts: 31
    edited November 2012

    Thank you so very much for your kind messages and advice regarding my dog and my situation at home!!  I know we are all going through our own struggles, and they are equally hard in different ways!  I appreciate being able to vent here and know there are those that understand.  Now I've come down with a horrible cold...... ugh.  I think the hardest part of going about this alone is not being able to just go to bed and have someone else take over the night time activities.  And my son is such a night owl.  I try so hard to get him on an earlier schedule but no matter what I can almost never get him to sleep before 10:00pm.  So frustrating.  :(

    cgesq - I'm on TCH and they have always gotten by treatment in the H-T-C order.  I thought it was to give the pre-meds (anti-nausea) maximum time to work but maybe there is something they know, too.  I'm gonna ask the nurse next week when I go for treatment #5.

    I am going to ask my doctor if there are studies about the effectiveness in 6 treatments vs 4.  I really want to be done with the TC portion now.  I am feeling worse and worse everytime, as I've noticed many of you are too.  I can't imagine keeping this up.  I think with being triple-positive and grade 3 (my tumor was 1.9 cm) I'm out of luck, but doesn't hurt to ask.  I would hate for skipping two treatments to be the reason cancer returned, too.  

    Hope everyone is feeling good today.  Thank you again!!

    Smile 

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  • Cindi74
    Cindi74 Member Posts: 363
    edited November 2012

    I wish I could say something to make you all feel better.  This is a rough road we are on.  I just have to believe that it is going to get better.  We all have something to live for.  Three of my grandchildren were here for about 30 minutes Saturday evening.  Will have a little more time with them Thanksgiving day.  They make it worth while.

    4th A/C is past, and now a week of fatigue is half over.  Then a break before Taxol starts in December. 

    I hope and pray you all feel better for Thanksgiving.  Hugs

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  • Amy4978
    Amy4978 Member Posts: 473
    edited November 2012

    Hope everyone is having a great day! I for one have become part of my couch and plan to keep it that way for the rest of the day.....



    Taxol number 4 on wednesday and since we are driving 3 hrs to my family for Thanksgiving and the hospital puts us 40 minutes closer we will be taking all three kids 4, 7, & 15..... We also have to be there by 8am! Not sure how this will play out but I have a feeling it will be the most stressful chemo session as of yet..



    Wishing all of you the best Thanksgiving it can be.



    Btw I too had watery eyes and a runny nose while on A/C but now that I am into taxol it has passed. It did take about 3 weeks. The taxol has my nose so dry I blow blood... But I will take that over the drip! I swear i wanted fo shove a plug up there.... Lol

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