Starting Chemo in May 07

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  • PDXLeeAnne
    PDXLeeAnne Member Posts: 119
    edited May 2007
    I shaved my head last night too! Yesterday at work I kept pulling at it and tons of hairs were coming out which was gross. I invited over 3 really supportive girlfriends (one flew out from NY to be a part of it) and we had champagne and snacks and my daughter (9 yrs. old) was there as well. I bundled up all the ponytails and will donate them to Locks of Love.

    I"m now sporting a #1 buzz cut and I feel like a Buddhist monk. I plan to take it out in public and we'll see how it goes from there. I might just rock the bald look proudly...

    2nd tx this afternoon and I'm just assuming that it will go as smoothly as the first!

    Question: have any of you been told yes or no by your docs as to whether or not it's okay to sit in a hot tub? I'm afraid to ask because I don't want to hear no...

    Hugs everyone,
    LeeAnne
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2007
    Morning everyone!

    Congrats to all the newly shorn! ( I say Congrats because being bald takes one helluva lot of courage!) Lou, it will suck big time and you will not even feel like yourself at first but like everything with this journey, you'll grow accustomed to your new (but only temporary) look!

    Kim - I LOVE the idea of creating our own positive girls club on this May thread! For those of you unfamiliar, every week we post something(s) that is positive in our lives! I like how it keeps us thinking about the good things and often we talk about things that are unrelated to bc - always nice!!!

    LeeAnne - You are so brave - I wonder if I will get your courage and just go out bald? I see bald men daily and no one looks twice at them! I dunno...maybe after a glass of wine;-) I too, asked about hot tubs- so did another lady on these boards and we were told two different things: she was told no - the risk of infection is too high plus it was bad to raise her body temp - so she was told no, except for maybe her legs only. I was told no public tubs because someone may have a cold/flu in the tub and if I had an open wound anywhere then I could get the cold/flu. In regards to personal hot tubs, she said if I knew the people and was sure they hadn't been sick AND they took good care of their levels in the tub then it would be okay. If you have your own hot tub, then I'm sure it would be fine. This same nurse also said to stay away from malls on Saturdays because there were too many people but to go instead on Mondays. (Yeah right!) I realize they only care about our well being but I think some common sense should prevail - I'm not going to isolate myself all summer. I do however, wash my hands LOTS!! I also stay away from anyone I know is sick or has recently been sick.

    My positives for the week are:

    1. Today I am pulling my 10-year old son out of school this afternoon and we are going for lunch then golfing to a small par-3 course - just the two of us!! (The weather is gorgeous here it's going to be a high of 28 Celcius )not sure of what that is in farhenheit?)

    2. We have a night off from soccer (between the 2 kids we are going 5 nights per week) but today there is no game scheduled!!!! No sitting in the cold and no getting eaten by mosquitos!

    3. My and hubby are going to The Police concert this weekend! One of my favourite bands! It's an outdoor concert and the weather forecast is wonderful!

    Hope you are all doing well and have lots of positives in your day too!

    Mandy
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  • chemo072
    chemo072 Member Posts: 682
    edited May 2007
    Quote:


    Question: have any of you been told yes or no by your docs as to whether or not it's okay to sit in a hot tub? I'm afraid to ask because I don't want to hear no...
    LeeAnne



    Congrats on the head shaving party! I know it's really distressing and traumatizing but give it a week or two. Also, we live in Portland, where scarves are pretty much in fashion in any case. Lucky us!

    re: hot tub - I had a mastectomy, and have been seeing a physical therapist since about 2 weeks after the surgery, and she said NO HOT TUBS! It's a lymphedema risk, a risk which I'm not willing to take. So when I went with friends to Bonneville Hot Springs after hiking last weekend, they headed for the jacuzzi pool and me....I headed for a warm, not hot, bath....and kept my arm out of the water. So, in any case, everyone's situation is different but better to ask than to be sorry later, right?
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  • chemo072
    chemo072 Member Posts: 682
    edited May 2007
    Quote:



    Kim - I LOVE the idea of creating our own positive girls club on this May thread! For those of you unfamiliar, every week we post something(s) that is positive in our lives! I like how it keeps us thinking about the good things and often we talk about things that are unrelated to bc - always nice!!!




    1. My mom is here, she had BC too 8 years ago, so for her it's not such a big-scary deal, and when hang out the laughter flows easily - so I laughed so hard that I couldn't stop several times yesterday evening, and it felt SO good.

    2. It was 91 degrees here yesterday, and being bald definitely has it's advantages - go topless et voila - instant cooling!

    3. Old friends are coming to see me tomorrow, fr Ottowa and Colorado and Seattle, and I'm SO looking fwd to it.

    4. It's been the most incredible Spring in Portland - the flowers have been lush and gorgeous since March, and now the gardens are full of foxglove and roses. Oh my.

    5. By the time I lose my brows and lashes (but I hope I won't!) it'll be full-on sunglasses season. And the styles here at least are big this year - perfect! Love the timing.

    Have a great day, off to the bar, A/C #3. After today, only 5 more rounds to go!
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  • chemo072
    chemo072 Member Posts: 682
    edited May 2007
    Liz:
    Quote:

    Just wanted to post a quick note to say hi and I survived treatment #1 day 1. Feel pretty ok but a little weird but not in a really bad way.




    Liz - congrats, and let us know how it goes. Days 3 - 9 were tough for me, but some feel great - hope you're in the latter category! Hugs,
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2007
    Good point Amy - I never meant to imply that one should use a hot tub - I did mean to add "ask your doc" That was very negligent of me!! (Exactly how long have I had my medical degree you ask?)

    Also Amy - you live in Portland??? Lucky you! I love Oregon! Bandon is one of my favourite places on the planet - I could live there. Too bad it's a 24 hour drive from where I live (one way)- still I've spent 4 vacations there - the last one was last year - we did a big driving road trip with our kids - it was AWESOME!!
    Mandy
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  • sunshine123
    sunshine123 Member Posts: 31
    edited May 2007
    Hey, everyone. Congrats to everyone who's had the courage to shave their heads! I finished A/C tx #2 today. My onc added Aloxi and Emend, and so far it's helping a lot. I hardly have any nausea, and I'm not vomiting like before.

    I noticed last night that if I tug at my hair, it falls out in clumps. So I'm trying not to touch it so I can keep my hair as long as possible. I know I'm going to miss it when it's gone.

    Anybody have suggestions for activities to do while you're recovering from chemo? I'm not good at word puzzles, reading takes a longer attention span than I have, and I get bored after watching t.v. too long...I don't know. If you all have any suggestions, I'm open.

    Hugs, everyone. We can do this!!!

    sarah
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  • PDXLeeAnne
    PDXLeeAnne Member Posts: 119
    edited May 2007
    I will ask about the hot tub... it's my own and I'm really careful to test it and keep it balanced and clean. It just makes me so happy to sit in it (I keep my one arm mostly out) and it pounds the stress out of my shoulders as well. I call it therapy!

    LeeAnne
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  • lizzzy
    lizzzy Member Posts: 285
    edited May 2007
    How did you do it? Do you need a particular type of razor or shaver to do this at home? I want to do this in the next week or two because I want to donate my hair.
    Quote:

    Hello girls,,,,,,,,,,,,,,,,,,,,,,Ok,,,,,,,,I did it,,,,,,,,I had my daughter and hubby shave my head last night.
    Cindy

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  • PDXLeeAnne
    PDXLeeAnne Member Posts: 119
    edited May 2007
    As far as head shaving: I put what I had into a bunch of ponytails (I'm donating mine as well) and my friends cut those off with scissors. Then we used an electric hair trimmer. Easy as pie!

    LeeAnne
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  • lizzzy
    lizzzy Member Posts: 285
    edited May 2007

    Good for you! I'm ready. I saw your picture on your blog and you look great. I'm going to go look at wigs tomorrow. I think I'll send my hair to the Crowning Glory project since it's been colored many times and is pretty dry. They probably won't want it for locks of love.

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  • NeoPat
    NeoPat Member Posts: 102
    edited May 2007
    Mandy, I loved your list of things you have learned. This one made me laugh
    Quote:

    I wonder if mosquitos who drink my chemo blood lose their hair, suffer heartburn or other SE'S?




    Pat
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  • lizzzy
    lizzzy Member Posts: 285
    edited May 2007

    Thanks AmyaM. I am hoping for the best, but I know the side effects are supposed to hit day 3 or later.

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  • NeoPat
    NeoPat Member Posts: 102
    edited May 2007
    Quote:

    Anybody have suggestions for activities to do while you're recovering from chemo? I'm not good at word puzzles, reading takes a longer attention span than I have, and I get bored after watching t.v. too long...I don't know. If you all have any suggestions, I'm open.




    Oh, I would love suggestions, too. I was so bored when I was sick last week. I just wandered the house aimlessly and every minute dragged.

    Pat
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  • louloubell
    louloubell Member Posts: 14
    edited May 2007
    Hi everyone,

    What a fantastic idea the "positive girls club" is. Here is my list for the week:

    1. Tonight Marc and I will be back into our normal Friday night routine of ordering a home delivered Indian meal (my favourite), accompanied by a lovely bottle of red wine.

    2. Although today is officially our first day of winter, the weather here in Sydney has been amazing. Today is lovely, bright blue skies, no wind, about 18 degrees.

    3. At the moment I am looking out at about 10 little rainbow lorikeet birds feeding on my balcony...they are absolutely gorgeous.

    4. Next Saturday night, we are going with two other friends to see a comedian (Danny Bhoy) at the Sydney Opera House, so I am looking forward to having a great laugh.

    Sarah & Neopat - I would love suggestions for after chemo too. The first round I spent the time watching Grey's Anatomy on DVD (love that show), and just made sure that I went for a little walk everyday. I couldn't read books as my concentration was terrible, but flicked through a few magazines.

    LeeAnne - I just saw your latest pictures on your website. It was so inspiring, and you look amazing. You have made me feel so much better about next week - thank you!

    Sarah - I am so glad to hear that #2 was so much better for you. My chemo nurse said that it was a bit of trial and error with the first one, as they don't know how your body is going to react. Hopefully they will just get better for you now.

    Mandy - Did you have a great time golfing with your son? Have a great time at the Police concert on the weekend!

    AmyaM - I hope that AC #3 went well, and I am so glad to hear that you are having such a blast with your mum.

    Kim - I cannot believe that your son is meeting Stephen King. That is such an incredible achievement for him. Let us know how it goes, and have a great time in Toronto.

    I hope that everyone else is going well. Have a great weekend. My thoughts are with you all.

    Lou
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  • lizzzy
    lizzzy Member Posts: 285
    edited May 2007
    A few ideas I've thought of for activities: crossword puzzles, jigsaw puzzles, walking the dog, magazine recommendation: Mamm magazine (www.mamm.com) has nice inspiring articles on dealing with cancer and latest research. I've also started a blog (www.iamthebulldog.com) to record my experiences through this time. I think it is good for friends and other women with cancer to be able to read. I've noticed some of the other women on this list also have very nice blogs--I've seen LeeAnne's and one other one.

    Unfortunately (or fortunately I'm not sure) my favorite activity is reading and my concentration has been sucking lately even before I started chemo. So I cut crossword puzzles out of the paper and carry them around with me. I can't stand to just sit and wait with nothing to do.
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  • Bernadine
    Bernadine Member Posts: 49
    edited May 2007
    Hey Mandy,
    I'm so identical to you it's amazing, the things you learned so far are really the exact as mine. You are so right about eating pizza and Jalapeno because I love pizza big time but the heartburn it's eating me up.
    The hair thing is the same as you everwhere the shaving was suppose to be gone but no.
    The eyebrow and eyelashes I don't want to touch them.
    Hope that mosquito that bit me has all that heartburns that I have right now.
    I'm so thankful that somebody has the same journey that I have and I'm learning from you girls ~~~~~~ THANK YOU~~~~~ it means so much and it's encouraging.
    We all are amazing woman and after this we'll going to be so glad it's over and kicks all those cancer butts.

    I'm at day 9 of my 2nd FEC this time my stomach has been hit the hardest heartburn and today it's the swalloing it's hurt to. The rest I'm back to myself not thinking of the 11 of June for my 3rd.

    Thank you Mandy it was inspiring.

    Nadine from New Brunswick
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  • chemo072
    chemo072 Member Posts: 682
    edited May 2007
    Ahh...being bored sounds wonderful to me. Here's how I pass the chemo time.

    Soduko! It's been my mainstay. Also: Blog. Write. Research the next step in treatment. Research each side effect as it comes along, and decide what I want. Finish putting together my medical team.

    Listen, really listen to great music. Go for walks and really look at flowers. Telecommute. Organize my digital camera files. Deal with the piles of medical explanation's of benefits. Apply for financial aid. Read Anne Lamott's recent essays. Read Cancer Vixen (in comic form). Eat 3 - 5 times a day. Drink 2 liters of water. (The last two sound easy, but it's hard for me when I'm seasick constantly). Honor my need to nap. Return the phone calls I'm behind on. Keep up with the dishes/ clean the apt before company. Be present with everyone I spend time with.

    In fact, I'm so behind/overwhelmed I can't keep up - I wish I really could get good and bored. A poet laureate of the US once said: "Boredom is my muse." It was that time that fed his well of inspiration
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  • ocinny414
    ocinny414 Member Posts: 123
    edited June 2007
    Day 3 of Tx 2 has went well for me. I felt pretty good this morning. Just tired. I slept most of the day. Felt a little nausea this evening but didn't take any meds cause I had to drive and they make me really tired. I tried to eat but nothing tastes good now. I was wondering when that se was gonna hit.
    When I got home I was over talking to my neighbors and a big wave of nausea hit me. I got flush and started sweating and my eyes were watering and of all things I couldn't stop yawning. Was a pretty strange feeling so I came home and am now sitting in bed thinking about going to sleep.
    I was suppose to get the Nuelasta shot today but they didn't get the meds in at the my local hospital so I have to get it first thing in the morning. OH BOY. I'm not complaining at least I don't have to drive the 20 miles in to the oncs office to get it.
    Well sounds like it's getting ready to storm here so I'm gonna get some sleep. I seem to sleep better when it is raining.
    Have a great evening or day or whatever it is for everyone.
    CindyKS
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  • NeoPat
    NeoPat Member Posts: 102
    edited June 2007
    Thanks for the idea of magazines. I'm going to look for some this weekend. I also did jigsaw puzzles when I was too pathetic to do much else. Another thing that helped me a lot was visitors - visitors who don't stay too long. My sister and her family came on Sunday afternoon and it was a great diversion.

    I think it was Amy who mentioned getting a lot of projects done. I did that when I had windows of feeling a bit better.

    I also had some heartburn. It was not the sharp type, but just a dull constant pain in my mid-chest/back. Good to know that it is common.

    Pat
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  • cinrae123
    cinrae123 Member Posts: 419
    edited June 2007
    Hey girls. I have felt so good this whole week,,,,,,although I only had herceptin on Monday. I wish I felt this good every day during chemo,,,,,don't we all huh? I'm such a dreamer.......lol This coming Monday will be my second round of TCH,,,,,,this time the whole dose. Should be interesting how my body reacts to the whole amount instead of 1/3 the dosage that I have been doing (I was weekly). Went out in public for the second time today with my wig,,,,,,,,I think I will get used to it. I know it's just a me no self confidence thing. My family loves the wig and says it looks soooooooooo good,,,,,,but I think i need a few more times in public to convince myself. lol This weekend should be the real test,,,,,,We are going to a wedding on Saturday and a co-ed baby shower on Sunday. I'm just hoping no one will mess with the "do". lol One thing sort of good about being bald is,,,,,,,,when those hot flashes occur ,,,,,the cool air feels kinda good on the scalp. I think at least. lol
    Leslie,,,,,,,since you are doing the exact same thing as me,,,,,,,,,what is your typical week after chemo? Is there a pattern to your side effects? Do you get most of your side effects during the first week after chemo,,,,,and then have two good weeks? Just wondering as to what to expect next week.
    Pat..........I too suffered sooooooooo frickin bad from gastric upset/indigestion,,,,,,,,,,I finally got a prescription for Protonix,,,,and o boy,,,,did that make a world of difference for me. As your MD about something for heartburn. This stuff for me is a miracle worker.


    Have a great weekend all,,,,,,,,,,,,
    Cindy
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  • lizzzy
    lizzzy Member Posts: 285
    edited June 2007
    I just got a wig today. I'm trying to wear it around the house to get used to it. After you shave your head, will it stay on better? I'm a little nervous about it moving or coming off. That would be fun in public!

    I was also wondering if anyone could tell me how long you need to take the anti-nausea drugs after an A/C treatment usually.

    Hope everyone is feeling good and has a great weekend!
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  • ocinny414
    ocinny414 Member Posts: 123
    edited June 2007
    DX 2 Day 4
    I made it another day.
    Got my Nuelasta shot today. Have had some muscle and joint pain but nothing I cant manage. Was really tired again today so slept most of it. I worked tonight. I didn't feel all that well but I needed to get out of the house. It rained so I didn't go up to the Relay for Life. Not sure if they still had it.
    I have this awful taste in my mouth and have brushed and brushed and used tic tacs etc and nothing helps. Not even water tastes good. I did get a philly cheese steak from Kream Kup and it tasted pretty darn good. But after I finished eating the bad taste was back. Any suggestions on getting rid of the taste. I dont like hard candy and sucking on something turns on the gag reflex so that just wont work.
    I think the great Folical escape has started. Every time I run my fingers through my hair there are a bunch of hairs that come out. I guess I'll have to break down and go get some scarves or something. Maybe I will just shed a little and not loose all my hair, cause man I have enough. Problem is, I keep trying to give what comes out to the people who are suppose to love me and for some reason they dont want it. I cant see why not. LOL I even told them to cherish it forever. OH WELL such is life. Of course they do give me pretty funny looks.
    I'm still keeping my spirits up and know that it is only hair and it will grow back, and I never really liked my hair anyway. Hey a whole summer of no bad hair days and no hair cut or color expenses. I can handle that.
    Well it's late and I'm ready for bed. I'll keep posting on the hair loss.
    Nite and have a great weekend,
    CindyKS
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  • lizzzy
    lizzzy Member Posts: 285
    edited June 2007

    I heard that zinc lozenges can help with the metallic taste, but haven't tried it yet.

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  • PDXLeeAnne
    PDXLeeAnne Member Posts: 119
    edited June 2007
    I'm day 2 of DD A/C tx #2 and feel really good. Just red cheeks. The nurse suggested adding half a benedryl (12.5 instead of 25) to the compazine to minimize some of its unpleasant affects. It seems to help. As far as how long to take the anti-nausea meds: I take all my emend and decadron and that goes through day 3 and 4 respectively and then I try and stop everything except ativan at night. I do take Zantac every day, nibble crystallized ginger, take tums, and do a few other home remedies when needed.

    I've yet to cover my head at all. It isn't bald yet (but I anticipate that by Monday or so it might be 'cuz it's coming out really easily when I pull it), but is a buzzed #1 so darn near. I actually like how it looks, considering. Liz, I'm glad my hair pix help you feel braver about shaving. It really is nice not to have the anxiety about it anymore.

    Gotta say I love this new chemical photosensitivity thing! I went to Mexico on a little spa vacation before chemo started and had a nice tan going. Today I sat outside for about 5 -10 minutes and wow - I can maintain it so easily! Definitely a perk as I feel so much better with a little color.

    Also, I asked about the hot tub and was told that as long as I am careful to stay super hydrated its fine. Yeah! I won't sit in it so soon after chemo but by next week it will feel good. I think it does make a difference that it's my own tub and I know how clean it is. A public one might be scary.

    As far as stuff to do: I have friends to visit me, go on walks, maybe go to a grocery store, read, do the crossword, do sudoku, work in the yard/garden a little, take naps... I don't feel that much like I need to lay around and find I feel better when I'm doing something. Otherwise I spend too much time obsessing about how my body is feeling. Know what I mean?

    Hugs to all,
    LeeAnne
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  • sunshine123
    sunshine123 Member Posts: 31
    edited June 2007
    I had my 2nd DD A/C dose on Wednesday. On Tuesday, the day before chemo, I went to see my surgeon because I had a nodule on the R side of my chest that wasn't going away since my surgery last month (4/07).

    She biopsied it, and I got the results back Friday afternoon -- it's positive for more cancer. I only had one A/C treatment before this cropped up, but it's SO discouraging. I feel like my body has become a cancer-producing machine, and I don't know where the off switch is.

    They're re-running the ER/PR status and Her 2 status to make sure it's the same type of IDC I already had.

    My onc says he doesn't think I'm immune to the chemo because I only had one tx before this happened. He's considering putting the radiation in between the A/C and the Taxol rather than saving it for the end to cut down the risk of another local recurrence.

    Please help me...I'm so scared and so discouraged right now.

    And to top it off (me being the girly girl I am), my hair is now falling out. So now I'm scared, discouraged, AND nearly bald. I hate this.
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  • chumfry
    chumfry Member Posts: 642
    edited June 2007
    Oh, Sunshine! That must have such a kick in the gut for you. My first thought was to suggest a mastectomy, thinking you must have opted for lumpectomy since you were scheduled for radiation. Then I read your profile. You have been through the wringer, and been very aggressive with your treatment choices.

    I think your doc has a good idea to move up the radiation. And I also think he's right that you're not immune to the chemo. (But what do *I* know?) Heck, the simple fact that it's making your hair fall out means it's working in some fashion!

    I know this may sound strange, but go ahead and take a scissors and cut off your hair. Or go to the hairdresser and let her buzz it. It will make you feel like you're in control of one tiny aspect of this whole mess.

    Try to make positive choices in other aspects of your life, to pamper yourself. You deserve it. This is a very tough road you're walking, but I hope it helps a little that we're walking alongside you.

    I'm one of the original Rocktober Chemo Girls from 2005. You can't miss us in the discussion board. We're the gabbiest bunch here. When I was diagnosed with my second tumor in April, one of the ladies told us a story about how female elephants in a herd interact when one of them is sick. If the sick one falls down, she's a goner because it's so hard for elephants to get back up. So all her sisters crowd around her so tightly that there's no room for her to fall. They literally prop her up on her feet until she recovers.

    That image has helped me over the past six weeks. Hang in there and don't be surprised if you feel digital elephant sisters crowding round you. Take time to grieve and rest, but don't give up. You can do whatever's necessary to reclaim your life.
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  • chemo072
    chemo072 Member Posts: 682
    edited June 2007
    Quote:

    I had my 2nd DD A/C dose on Wednesday. On Tuesday, the day before chemo, I went to see my surgeon because I had a nodule on the R side of my chest that wasn't going away since my surgery last month (4/07).

    She biopsied it, and I got the results back Friday afternoon -- it's positive for more cancer. I only had one A/C treatment before this cropped up, but it's SO discouraging. I feel like my body has become a cancer-producing machine, and I don't know where the off switch is.

    They're re-running the ER/PR status and Her 2 status to make sure it's the same type of IDC I already had.

    My onc says he doesn't think I'm immune to the chemo because I only had one tx before this happened. He's considering putting the radiation in between the A/C and the Taxol rather than saving it for the end to cut down the risk of another local recurrence.

    Please help me...I'm so scared and so discouraged right now.

    And to top it off (me being the girly girl I am), my hair is now falling out. So now I'm scared, discouraged, AND nearly bald. I hate this.



    Sunshine, will the nodule shrink during the A/C?

    My cousin's a pathologist and she saw a tumor post A/C (neoadjuvant therapy) and she said that sucker was dead, dead dead. And that chemo works. So....hopefully it'll work on your nodule!

    Big hugs, that sucks. Did you find the nodule on your own?
    Oh, I'm so sorry to hear that. I hope rads help, but wow, two treatments at once. Your poor body. But survival's the goal, so go for it. Do what you need to do, and I will be a sister elephant.

    I myself am wondering about screening during this process...do we get an MRI post-mast post-chemo just to check that something hasn't spread to the chest wall? How does the screening post-surgery post-chemo work?
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  • PDXLeeAnne
    PDXLeeAnne Member Posts: 119
    edited June 2007
    Sunshine, consider me another sister elephant. Talk to us about what is going on and we will prop you up! This must be so difficult. I do agree with CindyMN, buzz your head and you'll feel so much better about that little part, at least.

    Keep us posted and know you're in my prayers,
    LeeAnne
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  • NeoPat
    NeoPat Member Posts: 102
    edited June 2007
    Quote:

    I was also wondering if anyone could tell me how long you need to take the anti-nausea drugs after an A/C treatment usually.




    Liz, I had A/C on a Wednesday and stopped taking Compazine for nausea on the following Monday (Sunday was the last day.) I hate being drowzy, so took less than I might have.

    I was never horribly nauseous. I just ate small amounts regularly and ate slowly. It was not good to go too long without anything.

    Pat
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