Chemo June 2010

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  • jenweg
    jenweg Member Posts: 195
    edited June 2010

    Good luck today emmalou.  I hope you have no se's!!  It isn't that bad!  You can do it.

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  • momof2kidz
    momof2kidz Member Posts: 10
    edited June 2010

    Good luck Emmalou.  I will be thinking about you today.  It has been three days since my first treatment and so far the only SE I have had is some stomach cramps.  You will do just fine.

     Sherri K

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  • NorthernGirl
    NorthernGirl Member Posts: 67
    edited June 2010

    Hi ladies

    Kaycee, TMarina and Jenweg:  thanks for the suggestions for purchasing headscarves and hats!

    SKD:  I live in northern Ontario

    Mimi9186:  what is a MUGA scan?

    two hours to go before Chemo # 2.

    I had a meltdown last night. I hate that I have been feeling well this week, and now I have to be subjected to another infusion... And to think this has to go on for a year. It sucks. Plus I got my hair cut really short, it's falling out in clumps and I feel so ugly... like I should apologize to people who see me right now. I have been trying to do groceries and errands at unpopular times so that maybe I won't run into anyone I know!

     My hubby was great. I am so glad he doesn't insist on me being cheerful and positive all the time. I feel better today... 2 hours till chemo time

    I think I will wear a girly pink cap that my oldest daughter made... such style options. Sigh. I miss doing my hair...

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  • NorthernGirl
    NorthernGirl Member Posts: 67
    edited June 2010

    Hi Mimi... I just looked up MUGA scan... disregard my question. Is it only recommended when you are on Herceptin?  With all the chest pain and breathlessness that I have been having, it sounds like something that might be useful...

     Cheers

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  • Poppalicious
    Poppalicious Member Posts: 24
    edited June 2010

    Hi Emmalou,

    I also had my first chemo visit today - so far so good, just feel a bit lightheaded (kinda drunk actually) which is amusing.  I hope this feeling lasts for as long as possible :)

    Hope all is well with you, we can get through this together!

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  • TMarina
    TMarina Member Posts: 692
    edited June 2010

    Good luck emmalou!  Come back and let us know how it went!

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  • TMarina
    TMarina Member Posts: 692
    edited June 2010

    Notherngirl-->the MUGA scan is for the Adriamycin chemo, as well as Herceptin.  I think my onc told me that is why they don't give those 2 drugs at the same time.  All chemo is scary, but having to have these 2 makes me even more nervous!

    My MUGA rate was 65% and that is perfectly normal.  They do the first one as a baseline to compare the other ones to.

    poppalicious--> glad you are through with your first chemo, and doing ok!  Is the "T" in your cocktail Taxol, or Taxotere?  And I assume the "C" is Cytoxan, like mine? (I have AC now, Taxol in Aug.)

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  • Carol913
    Carol913 Member Posts: 23
    edited June 2010

    I recently found this Thread and am surprised how many of you are Stage 1, had a small sized tumor, and are having to take chemo!

    I guess I wrongly "assumed" that I would only be having Radiation. I have not met with the Oncologist yet, so I do not know my treatment plan.

    I have serveral friends who had IDC, an early Stage, were ER+, PR+ and HER2-.
    I am wondering if it is the Grade (I am a 3) that might put me in to the chemo group.

    I realize each and every person is unique in having their treatment planned, but I think I am seeing a pattern for those with high Grades are getting chemo.

    Does anyone know if that is right?

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  • RS711
    RS711 Member Posts: 105
    edited June 2010

    NorthernGirl- I SO understand how you feel about "apologizing" to people, it just feels so uncomfortable sometimes, I stayed in the house for a good 2 weeks before I ventured out to see people... and actually it went better than I expected... my friends wanted to hear all about the various lengths of my hair and about the treatment, and my family said they loved my scarves. But I can assure you that it doesn't matter what anyone thinks... they'll get over it... you're the one going through this, and just focus on yourself right now, do what makes you feel comfortable.

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  • RS711
    RS711 Member Posts: 105
    edited June 2010

    Carol913- I think it also depends on tumor size and # of lymph nodes.

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  • mimi9186
    mimi9186 Member Posts: 127
    edited June 2010

    Northern Girl,  If this concerns you, demand a MUGA from your onc.  It is a fairly simple test to see the heart function.  Advocate for your self.  The docs really will listen.

    Sherry I agree with being knocked out.  My GP gave me lots of lorazepam (it's addicting) and I intend to do self anesthesia for the first few days of the next trmt! The dexamethasone kept me spinning and not sleeping for 2 weeks.

    Carol1913  It is hard to say what your treatment might be.  Waiting to see the onc is the hardest part.  If it does include chemo, we are here to support you.  When is your appointment?

    Mybails, how are you doing today?

    Blessings, Mimi

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  • twinmomjackie
    twinmomjackie Member Posts: 24
    edited June 2010

    NorthernGirl- I completely relate to the feelings you are having about your hair. I am usally a fairly confident woman who doesn't spend a huge amount of time getting ready to go anywhere (just quick make up and basic hair). Now I feel like it takes me forever to find the right head cover (scarf or hat) to coordinate with outfit. Then I have to find right earrings and put on make up just right in an effort to not look like a man. I hope this is just an adjustment period and that it will get easier. My own children (6 y.o. twins) have enjoyed cutting and buzzing my hair so they think it is great. I am a teacher and went to school for a meeting this week and ran into some of the students who were there for summer camp. They all hugged me and said "hi", but not one mentioned the scarf I was wearing or seemed to notice anything different.

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  • kaycee
    kaycee Member Posts: 39
    edited June 2010

    Poppalicious --

    I am so glad to hear Chemo #1 went  well for you this a.m.! I am set to go at 1 p.m. today for my first time, and hope I do as well as you. Keep us posted on how you feel later please?

    Carol913 -- 

    In my case (Stage 1, Grade 2, 0/10 nodes), I knew from reading my pathology report that chemo was most likely in my future because my receptor status is triple negative. That means that my tumor was a fast-growing type that isn't sensitive to estrogen, progestrone or HER2. There are medications that can be given post-radiation to receptor-positive women to help keep their cancer at bay, but chemo/rads is the only option currently for triple negs. If you haven't received a copy of your path report, ask for it. There is good guidance on this website in how to interpet what it means, and it might give you a better understanding of what your choices are likely to be. 

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  • angelwoman1
    angelwoman1 Member Posts: 27
    edited June 2010

    Okay all, had 2nd treatment yesterday, and my hair is coming out in gobs! going to get shaved today and fitted for a wing, some thing sassy!  Went to my support group yesterday and my eye lashes and brows will go as well. signed up for feel good look better class 7/12/10 siteman cancer center in St Peters Missouri! My white blood cells were over than what they should be, but told not to worry my body is trying to fight! YES! well got to go get great Neuastra shot be back later. Hi to every one and thatnk you for being there for all of us!

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  • cheyenna
    cheyenna Member Posts: 379
    edited June 2010

    emmalou welcome, but im very sorry you are here, we would love to have you, this place has been my saving grace, keep positive and take those meds and ill bet you will fly right through it!!! Good luck today i will be thinking about you all day,Smile

    love ,peace, and NO se's!!!

    Chey

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  • cheyenna
    cheyenna Member Posts: 379
    edited June 2010

    carol1913, it does depend on tumor size and grade, your age, and other factors,, i thought i was home free when they said it did not spread to my nodes, plus i had a mastectomy..I about fell on the floor when she said "CHEMO!" then when they said ACx4 then Tx12 then Tamoxifen for 5 years? i had a major melt down. why the hell so much much chemo??? when i thought i caught it early? and i have Lobular BC...i freaked! my two ONC said  what i have working against me is  my age, and tumor size!!  because  my tumor was 2.6 cm and my young age!!  her words were " you have another 50 years too live and your tumor was a bit large" " those are the two things against you.. my second opinion ONC said the same but he only wanted to hit me with AC or TC x4..(my choice)  they wanna hit me hard to make sure no cell has broke off my tumor and is floating around in my body somewhere. the larger the tumor the more chance a cell could have floated away. i know it sounds so scary but it made a lot of sense to me, Im still waiting to get my Oncotype score maybe i wont need the Tx12 which is what shocks everyone. so i decided the ladies are correct and i should take the test.. it dissects everything about YOUR cancer tumor and scores YOU, and helps to make a decision whether u want or need chemo or not..im hoping for a low score so i wont have to do the Taxol once a week for 3 months...

    so far im 8 days out from first tx, my head is itchy, ut oh!!! lol

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  • DesignerMom
    DesignerMom Member Posts: 1,464
    edited June 2010

    Northerngal-I feel for you.  Here is where you get to be selfish.  You don't have to explain or apologize or do ANYTHING to help others feel more comfortable.  It is their job to adjust to you.  I know it is not the same, but I used to be self conscious if I gained weight and would be seeing friends that I hadn't seen in a while.  My beautiful, sensible mom would say "hell, just stand up taller, be happier, more confident and nobody will notice".  The old "fake it till you make it" works for me on days when I get blue.  By the way, have you noticed how LITTLE people actually see?  My DH still insists that my breasts look identical after the lumpectomy.  I KNOW they are no longer a matching pair.  I wonder if they ever were!!!

    angelwoman-  I love your typo.  I hope your WING fitting goes well and that you fly high!  I think God helps me laugh through typos.  A friend once typed nymph lodes instead of lymph nodes.  It still makes me laugh!  

    carol913-It is all WAY too complicated.  When you meet with the Oncologist ask if you will have the Oncotype DX test.  This test helps determine your chance of recurrence.  I was sort of in the gray area whether or not I should do chemo (even though I have one positive node).  I needed to do it for my own peace of mind, knowing I did everything I could do to not have the cancer come back.  My Oncologist was supportive of my decision.  Good luck.  These boards are very helpful.  There is also a great site called cancer math.  Just google "cancer math".  You can plug in your specifics, all the various treatments (chemo, hormone therapy, radiation).  It will calculate and project the different outcomes.  I found it very helpful.

    emmalou-  welcome!  I hope you have few or NO side effects.

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  • julia2
    julia2 Member Posts: 183
    edited June 2010

    Morning Ladies,  I feel pretty great today!  Mimi, thanks for the kind words when I was having my pity-party :-)  This is such an emotional rollercoaster!  Who knew waking up without a headache and having a bowel movement would be cause for euphoria :-)  It's all realtive right!  My poor family can't keep up, one minute my attitude is 'I don't care about anything, I'm going to bed', the next I'm cleaning the house and planning gardening projects.

    Had a fun trip to the grocery store this morning, I have lost 4 pounds this week, even though I have no nausea and I'm really trying to eat.  My appetite is poor and stuff tastes weird.  So, I went to the store and bought all the stuff I usually wouldn't allow myself to have because it's too fattening or too expensive. 

    Julia  

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  • TMarina
    TMarina Member Posts: 692
    edited June 2010

    Angelwoman--> thanks for the update. I will have my 2nd ac tx on Monday, and am particularly interested in hearing about the hair loss.  Not much happening on my head yet, but I swear the hair on my legs is growing much more slowly--wonder if anyone else has noticed that?

    Some thoughts on anti-nausea meds--> I remember reading that some insurance companies wouldn't pay for Zofran (ondansetron) and Emend.  Often the ins. co makes you try less expensive drugs first, but if they don't work, they will allow the more expensive drugs.  My ins co sends me the expensive drugs from their own pharmacy.

    Also, for those that have morning nausea, or are vomiting, Zofran has a "melt in your mouth" pill that you can ask your doc for.  Again, due to cost, the docs don't usually prescribe it at first. I keep the pills at my bedside and take them first thing in the am--no water needed, they are berry flavored and just dissolve in your mouth.  I just looked at the box and they are called "Ondansetron Orally Disintegrating Tablets".  You take them 2x/day instead of 3x/day.  I'm grateful to my home nurse for mentioning them last year!

    Off to have lunch with a friend!  Have a good day ladies!

    TSmile

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  • grneyd5600
    grneyd5600 Member Posts: 420
    edited June 2010

    Hi

    I have a question.  They apparently didn't do a oncotype test for me.  I asked my Onc this week when I went in to be sure and he said because I had positive lymph node that it wasn't protocol and my insurance probably wouldn't have paid for it.  I noticed from the discussions here that several of you with positive nodes still got the Oncotype score results. Wondering if I should have insisted on the test?  Any suggestions on whether I should revisit that discussion with my Onc?  Can they do that test post surgery? 

    Otherwise, I am doing well.  Treatment #2 will be next Tues.  All my labs were good this week.  Thank goodness!  I am excercising and even had a saline "fill" this week.   Overall it was a good week. 

     Sending well wishes to all of you and hope you are doing ok.

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  • julia2
    julia2 Member Posts: 183
    edited June 2010

    Jackie,

    The Oncotype book says the test may be appropriate for node + post menopausal women.  If your Onc requests the test then Genomic Health do all the leg work with your insurance company and then call you, and you get the final say on whether to go ahead or not depending on what it will cost you.  They contacted me within 24 hours of the test being requested.  My test was requested several weeks after my surgery, the path lab just sends a slide from your tumor.

    Julia

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  • DesignerMom
    DesignerMom Member Posts: 1,464
    edited June 2010

    grneyd5600- I was glad to have the Oncotype DX information as a piece in the huge puzzle.  Though I fell in the "low" score, I still chose chemo as I had one positive node.  Some insurance companies don't want to pay for this test.  I believe the Oncotype DX company will call your insurance company and try to get it qualified.  Even though I knew I would do chemo, I am very glad to know my recurrence risk. It also analyzes your specific cancer to see how it will respond to chemo. I believe you can still have the test done as pathology labs are required to keep your tissue "on file".  I would call the Oncotype folks to discuss.  They were very helpful and informative

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  • grneyd5600
    grneyd5600 Member Posts: 420
    edited June 2010

    Thanks! I really appreciate the information.

     I actually just called Genomic Health and they are great!  Very helpful.  They advised that since I am Stage 3 and had over 3+ nodes the treatment options should definitely include chemo even without the test.  The test would still provide me an indication of predictve on the possiblity of reoccurence but would probably not change the course of treatment.   With that said the insurance companies have been less likely to pay the cost of the test under circumstances like mine (hence the statement from the Onc). 

    I wouldn't even have known who to call or what to ask if you guys hadn't gotten me pointed in the right direction.  Most days I am directionally challenged anyway Cool  so thanks for keeping me on track!

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  • janny99
    janny99 Member Posts: 119
    edited June 2010

    emmalou ~ it's never too late to join this group!  I don't always write on here, but I read everyone's posts "every single day"...each woman on here has something to add, needs support, needs advice, has advice to give and sometimes just needs to vent and we feel a common bond because of what we are going through....friends and family try to help, but I have found wonderful support from these women, unlike what the people closest to me try to give.  Good luck today on your first treatment, the anticipation is so hard.  I will have my 4th Taxol/Herceptin this coming Monday (weekly, until August when I start FAC), and all of my symptoms have been tolerable, as well as predictable, and meds to counteract them.  The fatigue for me is the hardest part.  Everyone has said to try to get some exercise in...I'm working on that one.

    Okay, now the hair part!!!  My hair is still hanging in there, 19 days after my first infusion.  I guess because I'm on the weekly Taxol, that the hair loss may be a bit more gradual?  anyone else know?  Why this is bothering me, I don't know, I feel so vain worrying about my hair (I wear it short anyway), I have plenty of head coverings that will get me by, but I almost would rather have my hair fall out than 'wonder' when it's going to happen.

    Take care all!  You are all amazing!!!

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  • meliss
    meliss Member Posts: 31
    edited June 2010

    Welcome, emmalou. We are on the same treatment plan. I have #2 on Monday. Hope today goes well for you!

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  • Latte
    Latte Member Posts: 1,072
    edited June 2010

    Hi all,

    About the oncotype - I didn't have it, even though my insurance covers it, because I have positive nodes in locations that can't be operated, so chemo is my onlyhope to get rid of them. So there are all kinds of reasons why you may or may not need the test/chemo.

    I'm 4 days after my 2nd AC tx, and my hair is falling out in huge clumps - I was expecting it to happen earlier and when it didn't I got taken a bit by surprise. I've made an appt to get it shaved off on Monday AM, but I'm not sure there'll be any left by then... My 2-yr old daughter seems to be dealing OK with it (including getting it tangled in her fingers when she ran them through my hair) but this evening she asked me if her hair was going away too - so I had to reassure her that her hair is beautiful and nothing will happen to it.

     I'm completely exhausted and have no energy to do anything at the moment. I hope a good night's sleep will help - my daughter is staying with friends so I plan to take a sleeping tablet for the first time.

    Hope everyone has a great weekend!

    Latte

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  • brat352
    brat352 Member Posts: 41
    edited June 2010

    Hello again my June buddies!

    Wow!  Been off board for a week and had 4 pages to catch up on!  Very chatty group (and very informative!). 

    My bowels finally are back to normal.  Been taking Acidophillus (sp?), 1 mil/pill 3 times a day and that has helped get the good bacteria back into my body. 

    Went to MD on Wednesday and mentioned to him that it's been 15 days (18 today - Janny99 I guess it'll start tomorrow, right?) since first treatment and I haven't lost a single hair - all he said "it will happen".  I sort of hope so as I had my head shaved last Saturday and bought the cutest wig which I have been wearing to work.  I feel it will be a shame if I did all this and don't lose my hair!  And I feel sort of guilty when people stop me in the hall and say how cute my new haircut looks.  I've only told a few people that it's a wig and feel like I'm lying to the ones I haven't told. 

    My blood work came back very good so I go in for my 2nd treatment next Wednesday.  MD gave me Rx for Lomotil and Diflucan so I will be prepared if the same reaction happens again.  But if I remember correctly from reading these boards, the 2nd treatment can cause different side effects.  Oh boy - just can't wait to find out what will happen next - NOT!  But, just in case,  I'm going to be prepared to camp on my couch if need be - just started NetFlix and have a slew of movies in queue to watch!

    Well, gotta get some groceries into the house between now and the 2nd tx cause I know I won't feel like it after Wednesday.

    I wish everyone a wonderful weekend free of SE and full of love and hope!

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  • NorthernGirl
    NorthernGirl Member Posts: 67
    edited June 2010

    TwinMomJackie:  I feel the same way as you about hair. I never really spent much time on it. I was lucky that my hair had lots of body, so I got away with very little care. Now that it's gone, I miss it, even though my head feels light and airy. I spend so much time working on scarves and hats, and worrying about how it looks. 

    DesignerMom:  You are so right of course, I shouldn't worry about what people think of how I look, particularly at this time. I need the pep talk.... but....

    It doesn't help that I worked for a community organization, so it was all about suits and very conservative dress.  I did lots of events and public speaking... I feel self conscious about this new me.

    My mom has been away visiting my sisters and hasn't seen me in two months. When we talk on the phone, it's clear that she thinks hair loss is the very worst thing that could happen. I've been trying to get her to understand that the hair loss is minimal compared to the disfiguring surgeries, or the affects of chemo. What can I say? She sees the hair loss and not the other stuff.

    I am so greatful for my husband and kids. They've been great through all this. And they will help me deal with mom when she comes back next week.

    2nd chemo went okay, but I am already feeling the breathlessness and weakness. 2 down, 15 to go...

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  • Sherry9316
    Sherry9316 Member Posts: 294
    edited June 2010

    Emmalou - just ignore all my posts about my SE's.  For some reason I have always been the "exception" to the rule.  It seems most people on here have minimal SE's and I'm keeping my fingers crossed for you.

     And now I'd like to broach another subject that I've been avoiding on here - body hair, or the lack thereof.  Once again, I seem to be the exception to the rule.  I've always had only 3 hairs on one leg and 2 hairs on the other.  I have about 75 hairs on top of my head (not anymore) and 3 hairs on each eyebrow.  I've had a "natural" brazilian wax for many many years and there's about 2 hairs under one arm and none under the other.  So I get a little chuckle when I read about some of you and losing your body hair.  Sorry, I'm not laughing at you just thinking one less thing I have to put up with.  I would gladly trade losing body hair for being so sick though.

     Designer Mom - your hubby sounds delightful.  Mine keeps saying the same thing about my boobs about how they look just the same as before my two surgeries.  I think it means he really loves me so I think I'll keep him.  Either that or he's horny!  GASP - can you say the "h" word on here???

     Oh, and today my solid food has consisted of two tacos and a bowl of rice.  I feel very full!

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  • angelwoman1
    angelwoman1 Member Posts: 27
    edited June 2010
    TMARINA - We have just had our second round yesterday 6/24/10 and every thing went pretty well. But we are losing hair,13 days after 1st treatment. Went and had shaved today,going to put picture on tomarrow for everone. My Best friend went with me and we cried. Thought I could handle it but No I did not! We went to lunch afterwards. My insurance said they would pay for my wig but now they say no because it is a cosmetic. Really sad now. My friend did get me a couple of scarfs but not the same. love all of you.
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