The Chemosabe March Cruise

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  • taurie
    taurie Member Posts: 84
    edited June 2007
    Letting you all know as well, sorry I havent posted, but you can only whine so much LOL. I finally finished half way point. From now on its just Taxotere four more times, no more Cytoxin. Having bad issues still with bone pain, and infection and lympo. I will be soooo glad when this is over. I have been keeping up on the posts checking in on all of you and praying.
    Dawn
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  • maxgirl
    maxgirl Member Posts: 407
    edited June 2007
    dmknanny: I knew someone had stolen all my energy, and now I see it crossed the state line! LOL Glad you could make such wonderful use of your time off.

    Dawn: What a struggle you're having! At least you're half way done. We're thinking of you even when you can't post and wishing you an easier time of it.
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  • Keenie
    Keenie Member Posts: 258
    edited June 2007
    Hey Max,
    Glad to hear you have some stubble! I was at rads yesterday and there was a lady there with quite a lot of hair. Being such a shy and retiring girl (!), I said, so how far out from chemo are you - you have such a lot of hair! She said, oh, 5 weeks. Well, I was shocked cos I'm almost 7 weeks out and I don't have any where close to what she had.

    Yes, ladies, I admit it. I had Post Chemo Hair Envy.

    Maybe I'll have to start another thread. . .

    And Holly, I, too, am praying for you to have less anxiety and more peace.

    Christine
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  • jacqniel
    jacqniel Member Posts: 720
    edited June 2007
    Hi Ladies!

    I am so happy to see so many have reached the end of your need to have bar reservations! I found rads so much easier than chemo. I hope you all do, too. Just be aware that you won’t get all your strength back instantly, so don’t be discouraged!

    I have been lurking rather than posting for awhile and wondering if I should just get off at the next port of call or stay on board. I would really like to stay on board, but I am taking a bit different voyage that the rest of you. I have metastatic breast cancer (diagnosed in Dec ’06) so my bar reservations are going to be much longer than the rest of you, my fellow cruise mates. By the time I realized that most were first time cruisers I already felt a bond with you all, so just kept on the cruise. I haven’t talked much about my diagnosis as I didn’t want to frightened any of you - mets is a scary thing. So, my question is, are you comfortable with me staying in this group or would you prefer I pack my bags? I am OK either way - I do post on the recurrance/metastatic thread, too.

    Thanks and hugs,
    Jacque
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  • BettyeE
    BettyeE Member Posts: 267
    edited June 2007
    Stay on if you are enjoying the cruise. HA
    We love to hear what you have to say.
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2007
    Jacque,

    You simply must stay on the cruise with us. You have great knowledge, as you have cruised before. You are sensitive and gentle and very encouraging. Also, any of us may be seeing mets in the future and will remember your faith and be encouraged. Plus, it looks like several of us will be getting Herceptin for a year and will be around a while.

    I have noticed that you didn't really mention mets here and it IS scary to think about. I think it's ok to talk about it, though. Just as we are all staged 1, 2, or 3; why should a stage 4 have to keep quiet? We're all here to help each other and we love you, Jacque.

    So please stay with us. I'm not sure how we will transition once everyone else has finished or moved to rads, but it looks like there are chemo groups still posting from a year or two ago. We'll figure something out.

    No jumping ship!! You are stuck with us.

    Love love love,
    Miss S
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  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited June 2007
    Jacque - don't even think about jumping ship! I have known from the beginning that this was not your frst time on this sort of voyage, but have been grateful for your company. Any of our fellow passengers who are Her2+ will be having on-going infusions, so you'll be far from alone at the bar. Some of us will be having shore excursions for surgery and reconstrutction (and oophorectomies! oooh!) and will be glad for a shipmate holding a comfy deck chair for us upon return. You are a true chemo-sister to me and I would hate to lose you. Mets doesn't scare me away - any of us with our eyes open have/will need to confront the possibility that it's our future, too. Having you here to share simply makes me appreciate your bravery.
    {{{BIG hugs}}}
    Lisa
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  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited June 2007
    ATTENTION: Chief Purser and all Concierge Staff, Chemosabe Cruise -
    Admin. has become aware that one specific passenger on the Verandah Deck may be seeking to leave the ship at next port of call. Such disembarkation is to be prevented by all hands. Any activity toward gathering luggage and closing accounts by said auburn-haired, smiling, eye-twinklng passenger is to be reported at once to the Cruise Director.
    Your diligence in this matter is appreciated.
    As you were.
    The Captain
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  • rosebud1962
    rosebud1962 Member Posts: 196
    edited June 2007

    I agree with the Captin....I'm staying! I can't imagine where I would have been without you ladies. The knowledge, hand holding, sharing and support I'm not giving that up. I see that many groups stay well beyond their cancer treatment so that's what I'm doing and you should too. rosebud

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  • Keenie
    Keenie Member Posts: 258
    edited June 2007
    Aye, aye Captain!

    Jacque, we want to pray for you and hear from you as your continue on the journey. All of us will be stronger for your continued involvement in our journeys.

    Now, I must get back to my cabin as I need some rest before me next visit to Radiation Island. Oh, and rest up for any further "arm wrestling" (non lympho arms, natch) to keep others from disembarking.

    Christine
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  • jacqniel
    jacqniel Member Posts: 720
    edited June 2007
    You guys are the best. I must say it is rather hard to see what I am typing since my eyes have decided to have an allergy attack at this moment. But honestly, thanks for the encouragement. No need to post any guards on the departure deck - I am in for the long haul with you wonderful cruisers.
    I SO appeciate prayers. I often think that it has been the prayers that have brought me this far.
    Hugs, Jacque
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  • maxgirl
    maxgirl Member Posts: 407
    edited June 2007
    Well, good, you're staying! I'll cancel the call to the port authority to be on the lookout for an illegal disembarkation.

    I just have to echo the others, Jacque, that your encouragement and knowledge and caring have been very important to all of us cruisers. You said a few things when we first set out that made me realize this wasn't your first trip in these waters, but you've always seemed like one of us. I hope we all stay in contact like those on some other threads I've seen.

    Keenie: Too funny about the Post-Chemo Hair Envy. LOL Mine usually grows fast but it's taking its time now.
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  • dmknanny
    dmknanny Member Posts: 60
    edited June 2007
    Jacque,
    I agree with the Captain and everyone else 100% - don't even THINK about jumping ship! You are, and will remain, a very valuable passsenger on this cruise line and we NEED you to stay with us! You, as well as all my other sisiters on this cruise, remain in my prayers.......
    Diana
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  • GrammyNancy
    GrammyNancy Member Posts: 666
    edited June 2007
    Jacque,
    I haven't been on line today and am just finding out about your thoughts of jumping ship. I am so happy to see that you have decided to stay with us...we need you. I for one will be receiving herceptin for a year so will be on this cruise for quite some time and who knows what tomorrow will bring.

    You have been a valuable soucre of information for us and we would love to help you in any way that we can. We've each had our melt downs and you are allowed to vent here also...we are here for you.

    You will continue in my prayers,
    Nancy
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  • playwriter
    playwriter Member Posts: 316
    edited June 2007
    I agree, Jacque, you have been SUCH a source of encouragement for all of us. I have been grateful for the things you have said, and have appreciated your perspective.
    Love and prayers,
    terri

    chemogirlspeaksout.blogspot.com
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  • playwriter
    playwriter Member Posts: 316
    edited June 2007
    dear Holly, i'm so sorry you're feeling overwhelmed. one of my favorite verses is 1 Peter 5:7: Cast all your cares upon Him, for He cares for you."
    Praying for u
    terri
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  • playwriter
    playwriter Member Posts: 316
    edited June 2007
    DMKNanny -- you are my hero.
    Keenie -- maybe she was taking those hair vitamins. I heard about them on the boards here somewhere, but can't remember the name. I can't take them till after chemo is over, but I intend to 2 or 3 weeks out from my last tx. starts with a N, i think?
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  • marshabel
    marshabel Member Posts: 142
    edited June 2007
    Hi everyone -
    I haven't posted in quite a while, because I have had a really rough time with my first taxotere treatment. Whew! The bone pain, the blurry vision, the nausea, the stomach pains, etc., then the Neupogen shots. I'm six days away from treatment #2 of 4 and I am still having a hard time walking without pain. Saw my onc yesterday, and he just said that I am doing as well as can be expected. Oh, well.....I'll stop whining!
    I am SO HAPPY for those of you that are finishing up your chemo portion of this cruise. You are an inspiration to me!

    Please make my bar reservation for Wed., June 27 for Taxotere #2 (gulp). (Can I have a shot of Limoncello with that?)

    Marsha
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  • BettyeE
    BettyeE Member Posts: 267
    edited June 2007
    Make my reservation for Tues. June 26 for FEC #2 . I am not looking forward to this. I had a horrible time with the first. I hope just knowing what is coming will help this time.
    Bettye
    Good luck to all
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  • Keenie
    Keenie Member Posts: 258
    edited June 2007
    Hi Terri,

    I am using Nioxin shampoo, conditioner, and "scalp therapy" and my hair is growing. I haven't heard about hair vitamins, but I'm not taking even my multi-vitamin until I finish the rads. I was just blinded by the copious amounts of hair on the girl's head - I didn't think to ask her anything!!

    And Marsha, I'll have my Limoncello straight out of the freezer on ice. Oh yum! I can't wait until tomorrow night, when I'll be done everything but the Tamoxifen.

    Christine
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  • playwriter
    playwriter Member Posts: 316
    edited June 2007
    Nioxin was what I was thinking of. So, I go to the Nioxin web site, and they have a number you can call with questions.

    Me; Hi, I'm a chemo patient, and I'm almost thru with my treatment. What Nioxin product should I get?
    Guy On Phone: Is your hair fine, medium or coarse?
    Me: Uh, medium.
    GOP: Is your hair chemically treated?
    Me; I don't HAVE any hair. I'm a chemo patient.
    GOP: Oh, you're bald?
    Me: Yes.
    GOP: Oh, then #2. Make sure you use the follicle stimulator.
    ME; OK.

    You could tell he was just going thru his standard list of questions, and hadn't paid any attention to what I'd said at all.

    sorry Bettyle and Marshabel that you've been going thru such a hard time. better times lie ahead!

    had my Neulasta shot today. had to stop and go potty on the way there and the way home.

    love and prayers to you all.
    terri
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  • rosebud1962
    rosebud1962 Member Posts: 196
    edited June 2007

    Marshabel..I too have the same tx and the pain was crappy but then I remembered what someone said to try on here..L-Glutamine. I take the pill form, 500mg, three times a day. I cleared it with my onc and boy oh boy does it help. I had my second tx last week and hardly no pain this time. Hope it helps..rosebud

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  • GrammyNancy
    GrammyNancy Member Posts: 666
    edited June 2007
    Marsha, I'm sorry you are having such a tough time. As Rosebud says, i've heard alot of people talking about the L-Glutamine and they swear by it. You might want to check with your onc...might help. Prayers that #2 is better for you.

    Bettye, praying that #2 is better for you also. Maybe the L-Glutamine might work for you, ask you onc.

    Keenie, Hurray for you that you will done rads as of tomorrow. Doing the happy dance for you. Go out and celebrate!!!!

    Playwriter....how funny. Isn't amazing when you call one of those places and they have there script in front and they go on with it not even listening to what you are saying.

    Prayers for everyone,
    Nancy
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  • marshabel
    marshabel Member Posts: 142
    edited June 2007
    Thanks, Rosebud and Nancy - I am going to try the L-Glutamine. Do you take it every day, or just thru the chemo days?

    Marsha
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  • GrammyNancy
    GrammyNancy Member Posts: 666
    edited June 2007
    Marsha,
    I haven't used it so dosage I'm not sure of. Rosebud will have to answer that one. Hope it works for you.

    Nancy
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  • Keenie
    Keenie Member Posts: 258
    edited June 2007
    What a ninny at the Nioxin number! (ooh, alliteration. . . )
    I'm using the formula for thinning hair and it has a lovely mint smell. The "scalp therapy" makes my head a little red and tingly - and of course, minty fresh.

    My dear sis in law just dropped off 2 dozen of the most beautiful hot pink roses for me to celebrate. She's been so good to me and my family over the last few months, I should be getting her flowers. If I can figure out how to post a picture, I'll let you all see.

    I do hope everyone has a blessed and encouraging weekend, without aches and pains.

    Christine
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  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited June 2007
    Marsha, I wouldn't be surprised if a good bit of your pain isn't from the Neupogen. I've been taking 8 injections each infusion, starting on Day#2. The bone pain usually hits about 1 hour after inj. #3 and continues from there. I give myself the injections, so I am able to adjust (reduce) my doseage/dosing and I still have had very strong neutrophil counts (the important WBC). There is a good bit of evidence that l-glutamine can mitigate some SEs of the taxanes, particularly mouth sores (stomatitis) and neuropathy (tingling, stinging pain/numbness in hands,feet). Anecdotally, I have many times read where it helps to prevent the discoloration and loss of nails. I'll include some references at the end should you be inclined to read up.

    Rosebud, I am glad your small dose is providing relief - less is good, IMO. But, the generally used formula is 30 grams per day (30,000 mg), so usually a powdered form is mixed into a chosen liquid and enjoyed as a drink.
    I do mine as 10 gr. (about 2 tsp.), 3x/day. Aother poster uses 15gr. twice a day. I have read of advice saying do it every day, others take it for the few days around infusion. I generally try to do day before, day of, day after and maybe another day or two.
    My source for inexpensive, rapidly shipped l-glutamine is ebay.
    This is what I bought (about $45 in stores)
    http://tinyurl.com/22fk3w
    For those who may come along after the tinyurl is no longer valid, the ebay seller is
    http://stores.ebay.com/HTXvitamins and I bought the 500gr. for $12.99. It looks like it wil be just enough to see me through my six TAC.

    Good luck we ARE getting to the end. I'll be at the bar with you next Wednesday (LAST one!)

    Hugs,
    Lisa

    (1) Saverese D, et al: Glutamine Treatment of Paclitaxel-Induced Myalgias and Arthralgias. J Clin Oncol;Vol 16,No 12:3918-19, 1998.

    (2) Vadhat L: Reduction of Paclitaxel-Induced Peripheral Neuropathy With Glutamine. Chemotherapy Foundation Symposium XVII;Nov 8-11, 2000, abstract 41.

    (3) Fahr MJ, et al.: Glutamine enhances immunoregulation of tumor growth. JPEN J Parenter Entral Nutr 1994 Nov-Dec;18(6):471-6.

    (4) Rouse K, et al.: Glutamine enhances selectivity of chemotherapy through chenges in glutathione metabolism. Ann Surg 1995 Apr;22(4):420-6.

    (5) Klimberg VS, et al.: Glutamine, Cancer, and its Therapy. Am J Surg 1996 nov;172(5):418-24.

    (6) Anderson PM, et al.: Oral glutamine reduces the duration and severity of stomatitis after cytotoxic cancer chemotherapy. Cancer 1998 Oct 1:83(7):1433-9.

    (7) Miller AL: Therapeutic considerations of L-glutamine: a review of the literature. Altern Med Rev 1999 Aug;4(4):239-48.
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  • Cynthia1962
    Cynthia1962 Member Posts: 1,424
    edited June 2007
    Hi Marsha,

    I hear ya on the Taxotere. I had my first Taxotere on Tuesday and except for a bit of nausea and tummy pain yesterday and some acid reflux starting last night, I was doing good, but the bone/muscle pain began this afternoon and boy is that something. My chemo nurse said it would be in my legs, but it's everywhere. Bah!

    My onc said to use glucosamine with chondroitin for the joint pain, and glutamine for the nerve pain if I get any. I've read that it can take a few weeks for the glucosamine to build up to a level that helps with the pain, so maybe by my next tx it'll be working. I'm still trying to find out how much glucosamine to take.

    I haven't resorted to my darvocit yet, I keep hoping the 3 ibuprofin will eventually help. lol

    The scariest part is not knowing how bad a number the Taxotere will end up doing on me.

    Hugs to everyone with not feeling well. Thanks Lisa for the info on glutamine. I admit I have not been good about taking it because I don't like the taste. I'm such a baby.

    Cynthia
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  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited June 2007
    Christine - Your "Post Chemo Hair Envy" made me giggle! How wonderful to have received armfuls of roses to commemorate your finishing tomorrow! YAY, you!
    Terri - let us know what you end up experiencing with the Nioxin stuff. I may try it - I've been taking Biotin which is supposed to help hair and nails, so maybe mine is just waiting to pop out! yah, riiiight
    Bettye - thinking good thoughts for you that treatment #2 is very unlike your first.
    dmknanny - your stamina and energy are awe-inspiring. I find I can do ONE project a day, whether that project is gardening, going to church, meeting someone for lunch, etc. Though today I did go out to lunch and still managed a dog walk this evening. Glad you get the break before beginning rads. You are such an inspiration!
    Dawn - hang in there, girl. This second half should go faster and easier for you.
    Marsha, wish I could help with those other Taxotere symptoms - the blurry eyes, tearing (I'm actually carrying my great-grandfather's handkerchief in my purse these days! ), stomach pain and nausea. The latter two have been helped, for me, by daily small glasses of kefir (can be found at most health food and Whole Food stores). I was pleasantly surprised by the difference it made - not 100% of course, but a difference!

    All good thoughts for my Chemosabe Sisters!
    Lisa
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2007
    Hi Ladies,

    Wow, it's great to see so many people posting. I love hearing from everyone.

    Keenie, you have the best sense of humor! I love that. I bet you're great fun to hang out with. In fact, I would love a chance for all of us to get to do just that.

    I'll be getting my forth and final Taxol next Thursday (6-28). With A/C I has different SE every time, but Taxol has been very predictable. I am fine Day 1 and 2, bone/joint/muscle pain days 3, 4, and 5, with day 6 being tolerable and back to normal after that. I do take 15 grams of L-glutimine once or twice a day all the time during the two months of Taxol (I actually started early because I experienced neuropathy with A/C). I pour the powder into whatever I am drinking and it doesn't have a taste at all. I buy mine from Walmart for 9.99. It's actually the same size and potency as Lisa is getting from ebay. I have had a little numbness in my fingers and toes, but it disappeared quickly. Taxol really does send me to bed for those three days, though. I take Oxycodone and try to sleep it off. I will be glad to finish! Oh yeah, I also have almost constant stomach aches with Taxol. Almost everything I eat makes me hurt. I'm just glad the worst of it only lasts three days.

    HSN sells this stuff called Healthy Hair Skin and Nails. I used to take it and it made my hair look really good. I bought a big bottle of it and will commence taking it as soon as I get permission. It has Nioxin and Biotin in it, I believe. I'll be taking Herceptin, which is said to slow hair growth, so I don't know... we'll see.

    Still waiting for my special custom made sleeves so I can stop wrapping. I don't stay wrapped every minute (But don't tell my LT). MY arm only ever hurts in one spot right below my armpit.

    I had a mammo on my right breast today and it was looking good. The radiologist said so! Do you think he was hitting on me? Anyway, he sent me away with a good report. Yay.

    I have the blurry eyes, too. Plus a constantly running nose (Herceptin?). I feel like a coke head when I'm out. 'sniff, sniff, drip, drip, wipe, sniff, sniff, wipe' Oh well, I wish that was the worst of the stories I could tell!

    Cynthia, Holly, and Dawn... and anyone else having a hard time... I am thinking of you and praying for you. We are all getting closer to the end and we are making it! We can do it!

    Have a wonderful weekend. My challenge for tomorrow: wash the dishes.

    Love you all!

    Miss S
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