The Chemosabe March Cruise

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  • LauraZ
    LauraZ Member Posts: 15
    edited March 2007
    Hi Everyone - have not checked in on everyone since my first posting and am so sorry to see that many of you had a rough ending to last week. DMK, I am so sorry your family has so much to deal with -- but it sounds like you have a wonderful support system with each other and I know you will make it through. Holly, I was totally undone by the Elizabeth Edwards announcement, which caught me a little off guard (hence the disappearance from the cruise for a few days). Denial can be a wonderful, but somewhat dysfunctional coping mechanism. But I have decided that I can do this, look at all of you wonderful women!!

    I am at day 11 after first dose of taxol and feeling pretty good. Hair is still intact, but feels like straw. I think we should make a top 10 list of reasons that losing your hair can be a good thing--no more bad hair days, saving money on shampoo and hair cuts, perpetually smooth legs and armpits.... 2nd round is this Wednesday as long as counts look good on Tuesday. I'm going to lounge by the pool on deck until then and think positive thoughts. Anyone else wishing they could have a margarita?
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  • LauraZ
    LauraZ Member Posts: 15
    edited March 2007

    Also wondering if anyone else is on Taxol or involved in a clinical research study? I am doing both and would like to know how others feel about this.

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  • bugs416
    bugs416 Member Posts: 10
    edited March 2007
    I have a quick question: Is it ok for people undergoing chemo to put on nail color?

    I am also wondering if those of you who have attended the Look Good Feel Better (or similar) class would care to share the do's and dont's and other safety tips on how to avoid infections etc.

    Hugs,
    Maliha.
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  • GrammyNancy
    GrammyNancy Member Posts: 666
    edited March 2007
    Angel, Holly & Taurie,

    I'm concerned as I have not seen you post lately.
    Angel, the last I heard you were battling the big D and they were threatening a hospital stay. Are you okay?
    Holly, I believe you were to have your second visit to the chemo bar on Friday. Are you okay?
    Taurie, Do you finally have a sail date? Has the port issue settled down?
    I'm sending positve thoughts and prayers your way!

    My battle with the big D has died down somewhat and the fever thing has settled down somewhat- only seem to run a fever in the afternoon and evening. Think the antibotic and shot worked. I go back to onc tomorrow so please pray for good counts. I got to tell you I'm getting pretty tired of laying on the couch....good thing I'm an avid Tarheel fan.
    Day 13 after first bar visit - losing hair on legs (good thing) and arms but not on head yet. Head hair feels somewhat like a haystack. Looking a little pale (this could be from this little thing I'm dealing with).

    I was wondering has any one used that sun in a bottle and do you know if we can? I think I'll ask tomorrow....a little color and sure make me look alot better.

    Beautiful spring weekend, enjoying the blue skys, flowers and birds. I wish each of a blessed day!

    {{{{{HUGS}}}}}}}
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  • maxgirl
    maxgirl Member Posts: 407
    edited March 2007
    Nancy -- Glad to hear you're feeling better. I imagine the Elizabeth Edwards new has hit a lot of people hard -- I hope they're just taking a break from BC. If Holly is like me after Tx2, she's taking a lot of naps. I've felt pretty good since the day after, but I've been sleeping much more this time around.

    Angel -- I do hope you're recovering from the big D -- your poor body is going through enough.

    playwright -- I know how thinking about recurrence can drive you nuts -- the scores I know are just slightly lower than yours -- but try to focus on what needs to be done today. There are too many days with all they bring before "what if" enters the picture.

    nanny -- My heart goes out to your poor family -- so much to deal with all at once. You will all be in my thoughts these next few days.

    sheri -- Thanks for posting the WINS link -- I'm definitely a convert.

    I read about and went on it even before I got my final diagnosis. I managed to lose 10 lbs I had been fighting for a year before chemo started -- amazing what a little motivation will do for you! I aimed for 25g of fat, so that I probably got 30. I'm not trying too much during chemo because my appetite is generally poor, and now I'm just trying to hold at one weight.

    I have several risk factors for BC, and I'll probably never know if it was one thing or just the piling up of factors that triggered the BC. By the same token, there are several things it seems we can do on our own to lower the chance of recurrence -- diet, exercise, some supplements, relaxation therapy and/or meditation, etc. And maybe one or some or all of these factors will prevent or at least delay recurrence for a longer time. I'm going to shave off every percentage point I possibly can.
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  • HollyHopes
    HollyHopes Member Posts: 497
    edited March 2007

    Thanks for your concern Nancy - just a tough weekend post-chemo. Slept off and on and on and off....sweet son left an hour ago for the airport to go back to school in PHX. Sad to see him go...hope I've got the 'juice' to make it into work tomorrow...and hoping everyone else is doing well...

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2007
    I have spent the last two days sick. You ladies who are working during chemo sure have my admiration!

    I had a horrendous headache, first constipation, then diarrhea and vomiting. I felt awful. Last night my son brought over two bottles of gingerale and I sat up all night drinking one of them so I wouldn't get dehydrated.
    My temp was up to 100.5 with Tylenol. I was really worried I would end up in the ER today, but I started feeling better and my temp broke.

    Angel I am afraid you did end up in the hospital. I hope to hear from you soon.

    My thoughts are will all you gals who are suffering, but I am too weak to talk to everyone right now. I guess somehow we are all going to help each other through this.

    I can honestly say I am not liking chemo. I hope chemo likes me and kills all my evil cancer cells lurking inside.
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  • whitecotton
    whitecotton Member Posts: 106
    edited March 2007
    I am so worried about all of us. Not many post this weekend. I have been fighting the queezie's all weekend. My mom was with me since the dh was out of town. Thank god for mom's. I have spent time reading and wished I could respond to all of you but just sitting here typing is hard. So my hugs and prayers to all of you.
    If you can't type much just be short so we can know you ladies are ok.
    Miss you all.
    p.s. I am 44
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  • taurie
    taurie Member Posts: 84
    edited March 2007

    Thanks so much for worrying about me, I am here and reading your posts daily, just havent posted much as the port has settled down but I think its the stress, I am just so tired all the time and I havent even started the chemo yet. Called the dr friday and they said the muga from wed was not in yet, so I will call again tomorrow. I am real fed up with this oncologist, I will change I just want to get going on this first.

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  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited March 2007
    Good late-evening, ladies!
    zigzag - I am not having Taxol or participating in a study, but I would have jumped at a clinical study if there had been one nearby looking for my sort of case. I thank you for participating. Any research on tweaking present treatments or finding new, more effective treatments is only possible because of participants like you.

    Mahlia, I have never read nor been told that there are any reasons a chemo patient cannot have a fabulous manicure! No cutting of cuticles, but polish is a GO! The Look Good program I attended didn't include much in the way of safety tips beyond the common sense - don't share mascara, be gentle with irritated skin, moisturize extra if you experience new dryness, etc. But I will get my booklet and check on any other tidbits and report back later.

    DMKNancy- my prayers are being offered on behalf of you and your family. Hold each other close.

    Holly - the WINS results are something I am interested in, especially as I too, have triple negs. I've always been a sensible, balanced eater. Lower fat, high fiber, no red meat. Lots of organic fruits and veggies year'round (many of them homegrown). I've always been active. In fact I could say I was an athlete up until just a few years ago (when my autoimmune diseases slowed my 4x/week training way down). None of this had a chance up against my BrCA gene mutation. I'd like to read more detailed and on-going results. The scientist in me is wondering if there is a causation or correlation going on here WRT low fat. There is also the fact of the study's use of 'self-report' to track diet - notoriously unreliable. The study was restricted to post-menopausal women, another limitation. Is it just that the women who were getting all of this counseling and coaching were taking better care of themselves in general or was it specifically the diet? Maybe it was the extra fresh air they were getting. Maybe it was a systemic response to lots of personal attention (the study calls it 'intensive intervention'). I need to read more. Like the NCI chief of Nutritional Science Research said "if verified, a surprising and potentially important observation regarding breast cancer and signals a possible new avenue of research". Such as the Women’s Health Eating and Living (WHEL) Study, to be completed this year, which should provide further information on dietary links and recurrence.

    All that said, maxgirl - congrats on your obvious success with the fat reduction! I agree that it is tough to continue in the midst of chemo when you never know what will be palatable. I had salmon planned for dinner last night. Then I couldn't bear to look at it (and I love salmon!). I indulged in an old childhood favorite of my younger sister's - peanut butter, honey and raisins on whole grain bread. Yum! Why on earth I had that craving is beyond me. I haven't had one of those in 15 years!

    Angel - I hope you are finaly stable and resting comfortably and will be soon back to tell us so.

    MissShapen - hon, have you told your doc about your headache, constipation, diarrhea and vomiting? They do have meds for at least some of these and if one is not working, you can choose another and another. Speak up, woman and demand some relief!

    I'm glad to hear some of you AWOL cruisers checking in - sorry for all of the discomforts my sisters have been suffering. <group hug> I had several hours where I actually felt GOOD on Friday. And expected it to continue or even (hope, hope)improve. Well, now, from personal experience yesterday and from talking with a new friend who completed the same TAC regimen in Dec., I understand that response to tx. is not always linear (day 12 being better than day 11 etc.). You just can't know.
    Which sucks.
    I had a $#%&ing tough day yesterday. This morning was no better. Then this afternoon, I felt GOOD again, just like I had on Friday. Go figure. I am sure that the fact that have been getting 4 hrs. or less of sleep every night is not helping. And that is with meds.

    Lisa
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  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited March 2007
    Oh - also wanted to talk about hair.
    Holly, you have cracked me up with your "falling pubes" report. No, I wouldn't have expected that either! My hair report - as of Day#13: I still have hair on arms, legs and head. However, beginning yesterday, I have begun that bizzare zingy, itchy, painful follicle sensation that tells me a smooth pate will be happening soon. I picked up a new hat today. I owned only one - a sunhat for gardening and it's not exacly versatile enough to wear shopping or inside anywhere. Phooey - I've never been a hat person - or a scarf, cap or kerchief person - this is going to be a whole strange new accessorizing challenge. I do have two wig options - neither of which I like much (to me they LOOK like a wig) and they are very uncomfortable at this stage. But I have heard from others that after the hair loss is complete that the scalp sensitivity begins to go away. I can just see me trying to toughen up my scalp with a thick washcloth - kinda the way they advise you to prepare your nipples for nursing. Which, as I recall, was totally ineffective.
    Guess we'll all just learn as we go along. Any and all tips from those who cruised near the first of the month would be gratefully accepted.

    Terri (playwriter) - thank you for maintaning our roster. It just keeps on growing. I am inserting it below with a bit of editing for consistency, and to correct my name and add in my treatment.

    Kennie, Canada, 3/1
    stephj, MD, A/C + T, 3/1
    Refugee, NeOH, A/C, 3/5, 2nd tx 3/29
    Marsha2664, A/C + T, 3/5
    bugs416, VA, (her mom started sailing 3/6)
    LindaDK, KS, T/C, 3/8
    Maxgirl, MD, A/C + T, 3/8
    Holly Hopes, CA, A/C + T, 3/9
    Jillrush, LA, A/C + T, 3/9
    BarbKirk, A/C, 3/12
    GrammyNancy, GA, TAC, 3/13
    LisaSDCA, CA, TAC, 3/13
    BettyeE, MS, T + FEC, 3/13
    Marshabel, TX, A/C + T, 3/14
    Angelflight,CA, TAC, 3/14
    Pmarsh34, NC, TAC, 3/14
    zigzag,OH, T, 3/14
    JacqueN, NE, 3/15
    jfsnh (Jody), NH, A/C + T, 3/16
    Cynthia1962, CA, A/C, 3/19
    DMKNancy, PA 3/20
    whitecotton, Canada, 3/20
    Rosebud1962, MI, 3/20
    Misshapen. A/C + T, 3/20
    Paula37, CA, 3/21
    3boys4me, CA, T + Xeloda, 3/21
    Playwriter - (Terri), TX, A/C + T, 3/22
    musicmom3 - 3/22 clinical trial
    misK, PA, A/C, 3/23
    onlygirl4, carboplatin, T, herceptin, sailing postponed
    1stlite, MT, A/C + T, 3/29
    Fireba, NY, A/C + T, 3/29
    diamonds48, OR, T/C, 3/30
    JannM, WA, T/C, 3/30
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  • rosebud1962
    rosebud1962 Member Posts: 196
    edited March 2007
    I hope this Monday brings a better day for everyone
    I haven't had too many SE with my first round of chemo but I thought I'd share what's work for me with the dreaded D and or constipation. A few days before chemo I started eating Dannon Activia yogurt. It claimed to help regulate and "fix" your digestive system and since I knew that every dog gone pill I was going to take was going to take it's toll, I couldn't lose. It's been a life saver, I haven't been constipated and while my BM may be on the soft serve side, no dread D. This might just help. Beside, it does taste great and no nasty SE.
    Have a great day all and HUGS...Rose
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  • 3boys4me
    3boys4me Member Posts: 319
    edited March 2007

    I am part of a clinical study for neo-adjuvant therapy combining Taxotere and Xeloda in an effort to shrink the tumor prior to surgery.

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  • MisK
    MisK Member Posts: 15
    edited March 2007
    Sorry to hear you are feeling so sick, MissShapen. You have been in my prays. You all have been in my prays. So far, for my first treatment not bad. Little nausea, aches and pains, and tired but not bad other than that. I have discovered that using spearmint and wintergreen candies have helped with the nausea, just hope it won't give me mouth sores.

    Hope all is well with everyone. Take care. I admire you all. Keep those spirits high and that attitude positive.
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  • musicmom3
    musicmom3 Member Posts: 31
    edited March 2007
    Checking in - The nausea has been intermittently bad for me, but you're right Lisa, it is not linear. I felt better Saturday afternoon, then had to leave church yesterday. Made it home in time to vomit, and then felt much better. I'm working today, sipping on my water that my husband INSISTS that I drink 64 oz a day. I can't stand the thought of any flavored drinks - water seems to be the only thing I can tolerate.

    I'm also concerned about Angel - her last post was two days ago.

    Spring is coming to PA - yesterday was beautiful in spite of my somewhat depressed outlook. My crocuses are up to four inches and starting to bud. Better days are coming ya'll.
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  • HollyHopes
    HollyHopes Member Posts: 497
    edited March 2007

    hi all...a quick little note to tell you i am alive, not not well! tx #2 did me in...all weekend feeling miserable and not able to go into work today...hoping that an additional day of rest will get me back on track....will answer all your lovely posts when i can sit up for more than 10 minutes at a time without feeling dizzy...sending love and compazine hugs to all..

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  • MisK
    MisK Member Posts: 15
    edited March 2007
    Hope to be seeing you feeling better soon, Holly. You are in my prayers. Take care and get you rest.
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  • bugs416
    bugs416 Member Posts: 10
    edited March 2007
    LisaSDCA thank you for the nail color info.

    Taurie glad to hear that your port is settling in.

    I just wanted to let everyone know that I am praying for all of you, especially those who have recently had their 2nd chemo. Holly thanks for keeping us posted on your well being. I sure do hope that Angel is doing ok. playwriter, How are you doing today? Healing hugs to WhiteCotton, MissShapen, MusicMom3

    Maliha.
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  • GrammyNancy
    GrammyNancy Member Posts: 666
    edited March 2007
    Afternoon ALL,

    Just returned from the onc appt...my counts are back to normal YEA!!!!!! I had picked up a little bug that was making me feel so crappy...but that is behind me.

    Rosebud...I agree with the Dannon Activia...unfortunately, I didn't use until after the big D hit but I think it helped stop it. And it's is very good.

    MissSharpen and MusicMom - I'm really sorry y'all aren't feeling well. Have you called your onc. Mine gave me an antibotic and then a shot to boost my counts and it helped quickly. No need to suffer.

    Taurie, hope you've received news on your MUGA. The waiting is so hard...hang in there.

    Holly, hope you are getting some much needed rest. I hope you are remembering to drink and eat and drink. I admire you for continuing work..don't think I could do. Or at least I know I couldn't if the last 2 weeks are any indication of what the rest is going to be like.

    Angel...sending you prayers, hugs and tons of positive thoughts.

    Nancy
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  • playwriter
    playwriter Member Posts: 316
    edited March 2007
    reagrding the nails, what i've heard is that don't go get yr nails done due to the risk of cross-contamination, but u can paint them yourself.
    battling constipation here. thought i was ok, but not much moving down there. took a senekot S this morning and just now, so hopefully soon. headache, stomachache....
    love u all. blessings and healing to all of you!
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  • Cynthia1962
    Cynthia1962 Member Posts: 1,424
    edited March 2007
    Sending everyone well wishes and positive thoughts. My sympathies to those still feeling sick. I hope you feel better soon.

    I seem to be through the worst of it, knock on wood. Had my blood checked this morning and all my counts are down. They gave me a Procrit shot (ow, those hurt) so maybe the fatigue will lessen now. I wondered why I was so exhausted. Still feeling a tad queasy in the morning, but it doesn't last long. The big C has resolved, and I've only had two mouth sores so far that both basically resolved in about 24 hrs. Still have some heartburn, but pepcid ac is helping. I think my hair is starting to shed. Wondering when I should schedule my appt to have my head shaved?

    My mom is no longer helping me...long story short, she burned out...so, hubby and the children went to my appt. with me today and I'm trying to take care of the children alone when he's not here. I don't know what I'll do after my next tx. I start crying when I think about it, but at least I have a couple of weeks to find help.

    Hugs to everyone!!!

    Cynthia
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  • GrammyNancy
    GrammyNancy Member Posts: 666
    edited March 2007
    Playwrite, stay on top of it...seems so many of us are are getting sick. My fingers are crossed that things move soon.

    Cynthia, just take a deep breath....things will work out...I'm praying that you will find the perfect Mary Poppins.
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  • MisK
    MisK Member Posts: 15
    edited March 2007
    Cynthia,
    Was just wondering how far u are into your treatment? I had my first AC on 3/23. Everything went pretty well. Just a little upset stomach, aches, weak, and light headedness. Other than that not much problem. I am hoping all treatments go this well. I was just curious about how far u were because of u saying your blood count was down. I hope mine stays where it needs to be.
    Hope you are feeling better. Take care.
    I will be thinking of you all.
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  • LauraZ
    LauraZ Member Posts: 15
    edited March 2007
    Oh ladies, I'm so sorry that so many of you are feeling poorly. Just try and take it one day at a time, and if that seems overwhelming, take it an hour at a time. Try to stay hydrated--it really seemed to help me fight the constipation and fatigue.

    Rosebud, thanks for the activia tip. I'm going to get some tomorrow to start before my 2nd round.

    Taurie, hang in there. The waiting and uncertainty must be very draining.

    I also was told to avoid visiting a nail salon during treatment d/t cross-contamination. But a home manicure should be fine.

    My look good, feel better group didn't discuss too much regarding infection--they did say not to share any make up products, use wash cloths once-then launder, and to be liberal with sunscreen and moisturizers. Another tidbit was not to dry your wig on a styrofoam head d/t risk of mold (ugh! moldy hair sounds worse than no hair!).

    I'm hoping everyone's tomorrow is a better day.
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  • MisK
    MisK Member Posts: 15
    edited March 2007

    I'm 37.

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  • MisK
    MisK Member Posts: 15
    edited March 2007
    Steph_j, 37 here, too. I guess we have both heard the "You are young to have breast cancer" statement. I have heard it a couple of times. Not something I have ever thought I would have heard in my lifetime. I am, though, dealing with it rather well. My first AC dose was on 3/23. Everything went well. Not many side effects. Hope the rest go that well.

    Well, you are in my thoughts and prayers. Hope everything keeps going good for you.

    As always, all you ladies are in my thoughts and prayers.
    Take care and try and get your rest.
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  • rosebud1962
    rosebud1962 Member Posts: 196
    edited March 2007
    Cynthia.. I wish I lived closer to you so I could help in some small way. You are in my thoughts dear and I hope you find someone to help you. As others may have said before, take one hour at a time and do what you can. Keep your head up high and don't let the treatments get you down..it's do able. Anything is do able if you set your mind to it and girl..we all have to. Hugs to you dear...rosebud
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  • sybilvox
    sybilvox Member Posts: 12
    edited March 2007
    Hi fellow March cruisers,
    I have to admit that I thought this thread was for a reunion cruise or something! I just figured it out to open the thread and read... crazy me. I started DD A/C on March 1 and will have my 3rd treatment this Thursday, March 29. I have done pretty well with them. First one I had a cystitis thing, mouth sores and heartburn. This last time I had heartburn, more nausea, and now I have like a yeast rash or something on my bottom. It itches and bleeds some - I hate it. I am going to ask my Onc. on Thursday what I should do about it - diaper cream hasn't worked the best
    I will have 12 Taxol + Herceptin treatments after the AC. I am 46 and had 2 big tumors in left breast- radical Mast. on January 24th. 2 lymph nodes were postive - so I have IDC Stage III Grade III Estrogen+ and Herceptin+.
    Oh yeah- my hair fell out on day 15, shaved it the next day and am going with a scarf.
    Hope that wasn't the longest post and boring. Please add me to the list of cruisers - thanks playwright!
    I'll check in again soon. Hope everyone is doing alright. Get a calender(like I did) and mark off the days - it is thrilling to see all the X's for March!
    Take Care,
    Sybil
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  • Cynthia1962
    Cynthia1962 Member Posts: 1,424
    edited March 2007
    Welcome Sybil, glad you found us. It's great that your treatments haven't been too bad. Sorry to hear about your rash...that does not sound pleasant. I know when babies have yeast caused diaper rash, exposuring their bottoms to sunlight is supposed to help. Don't know how you feel about that for yourself, though, lol. I hope you find something that helps.

    Rosebud, GrammyNancy - thanks for the encouragement. You're right, somehow I'll make it work if only because I have no choice. What I really need is a chemo doula. lol

    MisK - I'm exactly one week from my first tx.

    Oh, I forgot to mention that my husband read that distilled water is tasteless and can sometimes be tolerated when other water can't so I gave it a try and was able to drink it with lemon when I couldn't drink even our purified water. Hope this helps someone.

    Btw, I'm 44.
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  • Jeanette39
    Jeanette39 Member Posts: 11
    edited March 2007
    Hi my name is Jeanette and I also just found this site. I start chemo on Wednesday. Yes I am scared listening to all
    the effects. My ocn told me that I would have 6 to 8
    rounds and the papers she gave me are for Adriamycin RDF
    and Crtoxan. She also gave me a prescription for the nausea.
    Sounds like I am going to need that. My history I am 39
    and found a tumor in January they removed my left best and
    12 lymph nodes. 4 nodes were positive they say I am at
    stage 3A.

    Jeanette
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