Starting chemo Sept 05

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  • prayer
    prayer Member Posts: 77
    edited September 2005
    Hey Marg.... where are you? I finally took the plunge and buzzed my hair to. Hope you are feeling ok. I'm thinking of you.
    Penny
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  • Pegk
    Pegk Member Posts: 389
    edited September 2005
    I got to bed early tonight, but I'm up for my get something in my tummy snack and I guess a bit of Decadron high.
    Cheryl -congratulations on your hair buzz. I'm at Day 31 since start of A/C and I still have patchy peach fuzz whith darker hair around the sides(kind of like a monk). I pull at it and it's stuck pretty good, but my scalp still feels too sensitive for a razor or tape. I'm just hoping to maybe hang on to my eyebrows. That's the next hair watch. Hope the lightning didn't get too close.

    Tina, congratulations on getting the meds sorted out. Have fun on sunday. Go for the lime green. It sounds more cheerful.

    Calico, glad your feeling better.

    Nicole, You've got to rest if that's what your body is telling you what to do. I'm glad you have help with the kids. Short walks outside might be helpful when you feel up to it (if its not too hot-wow! You're going into summer!)

    Susan-So far my celebration is just crossing treatment days off the calender. Although I have been mulling over a trip to a warm climate next winter when chemo is finished. That's probably only a dream, because I don't know if I've mentioned that before all this BC mess we started a major renovation on our house. Just this week the my kitchen appliances (except the refrigerator) were removed along with most of the cabinets. The contents of the cabinets are in my dining room. The new kitchen cabinets are piled in boxes in the living room. The addition needs electric, plumbing, inside walls and a floor before things can be put back together, so I'm looking at several weeks of barbecuing, take out and eating out.

    Oh well, time to try to get a little more sleep.
    Bubbles, good luck with your treatment tomorrow (today?)
    I hope the new day is good for everyone.

    Peggy
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  • Pegk
    Pegk Member Posts: 389
    edited September 2005
    AussieMom,
    Love your new picture! I took my Benedryl, went to bed, and that's what popped into my head. Had to get up to show my appreciation. That's decadron for you.
    I'm sorry that the Neulasta is giving you pain. What does your doctor reccommend. I was told just tylenol, but I haven't had the problem. I hope you're feeling better soon.
    Keep smiling, Your picture worked for me.
    Now maybe I can sleep.
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  • tornadogirl
    tornadogirl Member Posts: 133
    edited September 2005
    Hi Prayer, I am geetting 4 AC and then 4 Taxol. i hope i dont have a bad reaction to the Taxol....I have Triple negative tumor grade 3, just barely Stage ll, a lumpectomy with negative nodes and one onc reccomended just 4 AC. Two oncs advised 4 AC and 4 Taxol.

    Are you getting Taxol too????
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  • ambronco
    ambronco Member Posts: 2
    edited September 2005
    Can tell me about the John Hopkins nurses study, with respect to walking. I am interested in participation if it's possible to join.

    Thanks
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  • nmherr
    nmherr Member Posts: 63
    edited September 2005
    I had to start a cheat sheet to try to remember everyone and what they say. The mind is gone, the hair is gone the boobs are gone and so many people still love me. God is good. I love all you ladies on this site. It is always the high point of my I can't sleep nights and days. Haha.

    Aussiemom
    I loved the pic of your head. My son 18 is having a hard time letting me go bald. I am having an awake time and so I went on a hat and scarf review. I tried several I own in several different ways. Got to giggling over a few looks. I found something cute I think will please my hubby and son but the rest of my friends get silly. Decadron is a steroid, the way the chemo nurse explained it suppress the immune response and calms everything down. But it wires you and will keep you awake. I take 1 early morning and 1 at early afternoon and that is it. Any later and I'd be zoomin all night. Was also wondering about Aussie meds are meds not approved, expensive or are your docs behind in latest drugs. Hey maybe we are just a bunch of experimental rats in the US. I feel like one.

    Shekay,
    Where are you from? When I have questions I always call my chemo nurses. They are more in tune with the patients and usually help me more with meds. Please, all of you, read your 'Patient info' sheets on the drugs you get or look them up on line. Then you will know what to expect to happen as the drugs get in your system.

    Tina,
    Acid reflux and me go back to first time I had chemo 13 years ago. I had harsh treatments for Hodgkins and it did a mean thing to my stomach. Nexium is good. I hope it keeps the acid calm for you.

    Nichole,
    I too felt like you, wanted to quit after my first treatment. They say they cut it out then you feel like they are doing more damage with chemo. I had most of my family convinced I was quitting. But when I felt better I too came to the realization I probably needed it and my secodn treatment actually went better.

    Susan,
    Celebrate? After Chemo? You bet. I will go to church and we will all pray for someone else. I will run wild and free, I will eat all my favorite foods. I will make everyone feel my baby hair. I won't buy a new hat or scarf. I give my oncolgist friends little gold stars for getting me through and wish them a good 3 months til we meet again.
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  • nmherr
    nmherr Member Posts: 63
    edited September 2005
    Bubbles,
    I am getting 4 EC, Epirubicon instead of Ariamyacin. (Epi is easier on my heart and I had 6AC on my chemo years ago along with 2 other drugs at the same time.) I will get 4 taxol after the EC. I was complaining before my 2nd treatment about problems, along with better support drugs chemo doc also said Taxol will easier. (I think he heard I wanted to quit) However, if you don't know this, where the E/C takes about 2 hours to drip the Taxol will take 4 hours. It is a slow drip with lots of extra iv bags to dilute it. Be prepared to have to pee. With my friend who went through it they also pump in Benadryl which will knock you out the first time. You will wake up at the end and walk out like a drunk. She was a lot of fun on the drive home.
    Hey treatment 2 down and half way through EC. I am feeling optimistic I can get through this.

    By the way does anyone elses eys feel like they have sand in them? I squint for 2 days after Neulasta and feel like I my sinuses are on the verge of a cold. Thank goodness for tissues with lotion.
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  • jlpd
    jlpd Member Posts: 54
    edited September 2005

    Nicole, I too felt my sixth day was the worse...day seven was a little better...today I feel a little light-headed, but maybe running into sinus issues. I'm going to post a question about nausea meds under a separate topic, but I really wonder when it's 'safe' to let up. I have ativan 'as needed' and phenergan 'as needed'...I'm afraid that if I quit taking them, i'll really need them. As with everyone, everything tastes metallic...but I find if I have a piece of peppermint hard candy or eat something with cinnamon, it helps...a little. Susan...talk about party...My last dose should be right before THanksgiving...so I figure by Christmas, I'm going to make a FEAST!!!! and invite over all the people who have been helping me through this. Well, I'm going to take a short rest before getting ready to go to work...can't wait for the weekend!!

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  • tinkermax
    tinkermax Member Posts: 269
    edited September 2005
    Day 17
    well ladies, I had a grade 2 hair cut on Tuesday, but now if I grab my hair it is coming out in clumps so i have my sister coming around again to buzz it as short as she can.

    I am having trouble getting a wig to fit, the petite ones I tried are too big, so I have now ordered a Petite Petite size!

    I should have known I would be the smallest size available as i am very petite, even my new prosthesises are size 0, and they are slightly bigger than my real boobs were!

    Horsewoman
    I too suffer with my sinuses, and I am feeling sniffly all the time, but only on one side of my face (my left), my left side always suffers more than my right....but that's just me!

    Cheryl
    Glad to hear you took control of the hair issue, much better than moulting everywhere....well done

    Be well ladies, and take care of yourselves.

    Maxine
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  • AussieMum
    AussieMum Member Posts: 124
    edited September 2005
    Horsewoman, thanks for your questions regarding us in Australia:
    Quote:



    Was also wondering about Aussie meds are meds not approved, expensive or are your docs behind in latest drugs. Hey maybe we are just a bunch of experimental rats in the US. I feel like one.



    This is quite an information session to follow: Apologies for our chemobrains, but in reply:



    I am sure we have the same options as you, some may be more expensive.

    Our standard chemo treatments for breast cancer are:

    CMF treatment over 6 months which is equivalent to

    4 cycles AC over about 3 months. This can be given with T which I have now found out has side effects which are treated with dexamethasone - your decadron!



    Other combinations have been introduced in more recent times, suggestions here that they may further reduce risk of recurrence, but have increased side effects, increased risk of infection and hospitalisation. These are:

    FAC

    FEC

    The A, C, M, F and T are the same the world over!



    I am on FEC: 6 cycles, every 3 weeks. Neulasta as well. The cost is approx AUD$600 (approx US$450) for the course, not including extras.



    I am having triptorelin to suppress my ovaries and make me menopausal as part of a clinical trial. I was hormone +ve. Then tamoxifin for 5 years. Seems same for many.(not sure of the cost for this but not free!)



    I am Her2 3+ and herceptin is not approved except in the most advanced stage of breast cancer. That makes herceptin the most expensive part.AUD$66,000 (approx US$50,000) and as I have mentioned before, I am petitioning the government for it to be included on our pharmaceutical benefit scheme here. It appears in the US that some medical insurances cover pharmaceuticals, but not here.



    So all in all, I don't think we are too far behind here in Australia? What do you think? Let me know!



    Whatever the chemicals are, they are a knockout!



    We are certainly given lots of information, and have access to more!



    PS: glad you liked my head!

    After buzzing, and the sides were smooth, the rest was ready to come out but not heavy enough to fall. One husband, a pair of tweezers and lots of laughs. My 17 year old thinks it is cool - but please, not in public!
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  • txred9876
    txred9876 Member Posts: 392
    edited September 2005
    Norine,

    So far so good with the nexium (I had just ran out a while back so I knew I needed something ASAP once it kicked into high gear again). Today is Day 15 for me and hair is coming out pretty good now...I have that special function on Sunday and hope it will stay that long (if not I have a very nice wig that looks like my own hair anyway).

    I had a little nausea this morning but slept good last night with the new meds. Still sore from the neulasta shot (like having the flu). The first time I had it for about 3-4 days. I do feel very tired this morning and have noticed my eyes are very dry and since I already have sinus trouble good old sudafed works for some of the stuffiness. Mold and Ragweed are high around here.

    Anyway enough blabbing!..LOL time to go back to the couch. Maybe I will work on the knit baby blanket. At chemo yesterday I got about 1/4 of it done. It sure passed the time away.

    Tina
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    Just a quick note before I head to work: clearly there is some decadron in this group!!!!

    AussiMom, LOVE the hair! your sense of humor is wonderful.

    Peggy, celebrating with a new refrigerator sounds good! Renovations are there own trial, yes?

    Tina, wigs sizes are hard. Turns out mine is a little too big, but who knew when I bought it? I had tons of hair then!

    Prayer, for you I hope that you find a place of peace in your quest to find meaning from your dx. Somewhere your answer is waiting; finding it is your quest.

    Barb, being nervous doesn't strike me as silly at all. Let's hope that round 2 is as uneventful as round 1.

    Norine, and dance by the full moon? Again you have made me smile.

    I wish we would hear back from ski and hopeful. My thoughts meander to those who haven't posted back, hoping that they are doing so well that they don't need us.

    Have a wonderful day my friends.....

    *susan*
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  • twinmom99
    twinmom99 Member Posts: 6
    edited September 2005

    Bubbles, I sent you a private message, nothing secret, LOL....but since you are a Portland Oregon gal I just did it privately so I could send you my email.

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  • twinmom99
    twinmom99 Member Posts: 6
    edited September 2005
    Well, treatment #2 is next Monday and since this one was easy for me, no nausea whatsoever, I think I should celebrate with a little shopping. I'm dusting off that Visa and off to Banana Republic and I think I'll buy 2 skirts and 2 tops....that will be my way of celebrating, lol. A little retail therapy never hurt anyone did it??

    Plus, I think if I look really good from the neck down no one will notice my scarf or wig...okay, maybe the scarf but not the wig, lol.
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  • txred9876
    txred9876 Member Posts: 392
    edited September 2005
    Bubbles and Twin...I was born and raised in Porland! Does that count..LOL I just had my first vacation back home in June (it had been 3.5 years..christmas 2001). I am so glad that I went because all this started within 10 after returning home.

    Tina
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  • tornadogirl
    tornadogirl Member Posts: 133
    edited September 2005

    Yes TX! E-mail me at BC board and i will e-mail ya back! Are you here now????

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  • txred9876
    txred9876 Member Posts: 392
    edited September 2005
    I will write or instant message any of you ladies...

    txred9876@yahoo.com

    Tina

    PS no I live near Austin, tx now and not sure when I will make a visit up there again.
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  • txred9876
    txred9876 Member Posts: 392
    edited September 2005
    oh and just when I thought..hey this time will be just fine..not to bad on the nausea...no pucking..LOL...I just had to spike a fever...just a low grade and not high enough for the doc...yet...just at 100...not the majic 100.5 degrees....will keep an eye on it...this soooo sucks!
    Tina
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  • AussieMum
    AussieMum Member Posts: 124
    edited September 2005
    Stupid, stupid me! I'll blame the chemicals!

    Norine, you asked me about meds in Australia, and I got the exchange rate around the wrong way!!!!
    I have modified it, so my previous posting is fixed up now. It is 6:25 am. Has been on my mind since about 5:45 since hubby corrected me.

    Off for a walk. Have a great day/night!
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  • AussieMum
    AussieMum Member Posts: 124
    edited September 2005
    Twinmom,
    Retail therapy sounds great!

    I have tried clothes shopping twice since chemo began. The first time was not very successful: I stood in the change room and wept for a few minutes. All the new spring things are so pretty, and I couldn't fit them properly.

    You know how we are often a different sized top to bottom/pants/skirts? I can manage that in the shops. It is being a different size left to right that is harder to shop for!

    Well, I needed to try again - an old saying about falling off your bike have to get back on? (brain not remembering).Second try was better. I went for a plain not a pattern, and the differences weren't obvious. Success.

    As for what you wear on your head - I find my family more concerned about my head than I am. My son (17) doesn't care at home whether bald or scarf or beanie, but if people drop in, or I go out, he prefers the wig. Until he is a little more used to it, I understand.

    Shop until you drop!
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited September 2005
    I hate buying clothes so when I need some retail therapy I head to a kitchen store. Currently I am craving a Le Crueset dutch oven. I went to Sur La Table the other day to gaze at them, but couldn't get past the price so I bought a cool silicone pastry brush. Had fun, total price: $2.39!

    I am such a cheap date. :-)

    *susan*
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  • Pegk
    Pegk Member Posts: 389
    edited September 2005
    Hi Everyone!
    I just read about something on another thread that I've been experiencing, but didn't have a name for-it is called cording.
    I had a left mastectomy with about 20 nodes removed, which has affected the range of motion in my left arm. Everyday when I take my shower, I try to stretch it a little more, but I see a visible line under my armpit and down my arm. I don't know if it is a ligament or tendon, but I'm afraid of injuring it if I try to push too hard. I've just gotten a Rx for physical therapy, but haven't found anybody yet. Are any of you dealing with anything like this?
    Kind of funny-we're all so wrapped up with chemo side effects, that I've forgotten there was surgery first with it's own problems. Remember those drains?
    Can't wait 'til all of this is a distant memory.
    Peggy
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  • prayer
    prayer Member Posts: 77
    edited September 2005

    A cheap date is exactly what my husband calls me. His big joke is that my shopping spree is at the dollar tree or goodwill. I got to thinking about it and I am the only person in our family that doesn't have some type of activity they belong to. My husband plays baseball, my son cubscouts and my daughter dance. I am thinking I need one expensive hobby...just so that he knows I am not that cheap! I'm thinking a message once a week. :0)

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  • cazza61
    cazza61 Member Posts: 34
    edited September 2005
    I have one of those running down my arm too,I didnt know if it was a tendon or a vein I was starting to worry about it.I can only see it when i stretch.
    love carol
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  • monkey9cats
    monkey9cats Member Posts: 47
    edited September 2005
    Good evening!!! I just love everyones posts! Since we're all going through this together it sure makes it easier if you can chuckle a bit! Well I just got out of the shower. Had to clean the drain 5 times. Seems like I couldn't get rid of all the hair that was washing down my body from my head!! I am sooooo glad I buzzed it last nite! That sure happens pretty quick! Does it normally come out in patches? Mine seems like it is. I think I have more of MY HAIR around my house than the hair from all 11 of my cats!!!

    I have a couple of probably stupid questions. I try to read these posts and sometimes get confused with the abbreviations. Is TAC taxotere? Whats the difference between taxol and that? I'm going to be getting taxotere for my last 4 treatments and from what I read about it there seems to be alot more side effects than the epirubicin and cytoxan. (Is there an abbreviation for epirubicin & cytoxan) It sounds like with the taxotere there are more muscle & bone pains & possible allergic reactions. Also what does AC mean? Heck if anyone can fill me in on any of the abbreviations please do so (ha ha.)

    I may have to go out & buy one of those cat hair rollers like Susan was using. I laughed so hard. I tried scotch tape & that worked pretty good except you would have to use so much of it!!!

    Good nite ladies and everyone take care.

    Cheryl
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  • txred9876
    txred9876 Member Posts: 392
    edited September 2005
    Day 15...in the shower my hair became VERY thin this evening..might not even have to trim it now..LOL

    Oh well was bound to happen!
    Tina
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  • monkey9cats
    monkey9cats Member Posts: 47
    edited September 2005
    Tina....I'm at day 15 & mines coming out really fast. I've read that day 14 is when it starts and boy they are right!!

    Just a funny thing I meant to mention in my earlier post. My best friend (who buzzed my hair last night) also buzzed his. I think he really felt bad that I was going through this. In any case he said he thought he looked like Charlie Brown but when he went to work today everyone told him he looked like "UNCLE FESTER". I laughed so hard!!! I sure hope I don't resemble either one of them!!

    I bet if I went and stood outside in the wind that would remove some of these loose hairs that keep falling & hitting my body!!

    Night again all

    Cheryl
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  • foxxf
    foxxf Member Posts: 171
    edited September 2005

    To answer your questions on Meds in Australia, We have a Govt run system called Medicare and a pharmaceutical benefits scheme (PBS) to which a medicine has to apply and be approved to be subsidised by the Govt to the People. If a drug is listed on the PBS the most anyone will pay for it is $28.50 and the Govt pay the rest. If you have a Govt health care card for low income earners all you pay is $3.20 per drug.

    However if a drug is not listed on the PBS and you want it then you will have to pay full price ($600 Aussiemum mentioned) It is not easy to get drugs listed on the PBS the drug has to do something that the existing drugs don't, provide evidence of overseas trials,conduct local trials, the Govt then sees if there is a generic brand of the same thing (as you can imagine PBS cost heaps to run) and then they battle over the price the Govt will pay the drug companies. If they want to sell their durg in Aust they pretty much have to get listed on the PBS cause no one wants to pay $600 for drugs.

    The downside of this can be that getting a drug included on the PBS can be a lengthy process. However our system while not perfect means that you do not have to sell your house to get life saving medical treatment.

    hope this sheds some light
    Nicole
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  • foxxf
    foxxf Member Posts: 171
    edited September 2005
    Hi, just wanted to thank everyone for their support indeed today is day 7 and I feel much better.

    The cording in your arms is something that just happens occasionaly after surgery, they don't know what causes it and the breast cancer nurse told me that it usually goes away by it's self but can be present for up to 12 months.
    Continue to do your gentle exercises regularly and you should be fine but see your breast nurse if worried.

    Nicole
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  • prayer
    prayer Member Posts: 77
    edited September 2005
    ok does anyone know if we can drink wine during chemo? I am having my second AC tomorrow and really would like a glass...just one...of wine with a girlfriend.
    I am feeling very excited about tomorrow as I will be half way through. Yea! I know when day three hits me I will be asking my sister to remind me why I am doing this. She is very good at that. I am 1 or 4 girls in my family and the youngest. When mom died of the disease we all made a promise to each other that we would be very aggressive if it ever came our way. So far for a 7mm idc and DCIS I have had a bilateral and now chose to do chemo. Tomorrow I will be one step closer. I can't wait for the journey to end!! I really need some prayers, but I would love a glass of wine too! Help me out ladies!!! Love and appreciate each and every one of you. Thank you for being here.
    Penny
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