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  • Titan
    Titan Member Posts: 2,956
    edited August 2011

    ssclst..thanks for the info...I've mentioned to my onc that I would like to be in a trial if I could...I want to help..just not myself but others..

    Re: sleeping... I toss and turn also..like Heidi...I don't wake up and think OMG I have cancer anymore...but I still don't sleep well either...but I'm not tired during the day so maybe I don't need the sleep...I just try to stay up later...it's almost like I don't like going to bed...it probably doesn't help that I read Stephen King novels and other murder/suspense type books before I go to bed..My son thinks I should read Harry Potter...

    Kelben..a lakeside condo sounds wonderful..hope you get to close and move in soon...

    HA HA LJ about the $$ you could make on the street with the drugs...along with avitan I have a drawer full of oxy and vicodin from my son's surgery...

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  • Suze35
    Suze35 Member Posts: 1,045
    edited August 2011

    LJ - I'm so glad to hear you have started your chemo, and that the trial is still a go :). As for SEs, I've had a lot of fatigue, a bit of nausea off and on (nothing too bad), a little tummy trouble on my off week, a little tingling in my hands, and some headaches. That sounds like a lot, but nothing has been really bad. I'm able to function well, except for the fatigue - I find I have to nap in the PM, or I'll fall asleep where I'm sitting, lol. I weaned off the Ativan because I think I've been a bit spacey and dizzy on it, which can be a side effect from long term use. Since I've stopped, I've felt a lot better in that respect. I know what you mean about selling this stuff on the street, lol. I have something for whatever ails you, a veritable pharmacy! I have like three different kinds of narcotics, all with multiple refills.



    I appreciate everyone's input about the antidepressants. I've been managing pretty well up until a few weeks ago, and I've read others have had this issue with Xeloda. The hardest times are at night - maybe I do need to get some Xanax or something to help. Ambien was a nightmare!



    Kelben - I'm so sorry you are in this situation, but it sounds like you are doing what you need to do. I wish you a lot of luck with your new place!

    Titan - I don't like going to sleep, and I think deep down it is because I'm afraid that it is wasting my time, and life. If I only have a limited amount of time left, I'm scared to miss a second of it. :(.
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  • ksmatthews
    ksmatthews Member Posts: 812
    edited August 2011

    I got great news today, no signs of cancer at all!  There is hope for all of us!  I am sooo happy.

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  • riley702
    riley702 Member Posts: 1,600
    edited August 2011

    That's fantastic news, ksmatthews!! Woo hoo!

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  • Suze35
    Suze35 Member Posts: 1,045
    edited August 2011

    ksmatthews - what fantastic news! YAYY!

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  • Paintingmywaythru
    Paintingmywaythru Member Posts: 317
    edited August 2011

    ksmatthews...wonderful, marvelous, glorious, we will dance for you!

    I can't beleive with all I have been doing for my mouth...swishes, steroid pastes, diflucan, I got a new mouth ulcer yesterday on the side of my tongue. IT stings, burns, hurts to talk. I have emailed my onc for pain meds. Damn.......and again....Damn.......

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited August 2011

    ksmatthews - that's awesome!

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  • mccrimmon324
    mccrimmon324 Member Posts: 1,076
    edited August 2011

    kmatthews, Great news!

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  • Babs37
    Babs37 Member Posts: 455
    edited August 2011
    Kmatthews- Very happy for you Laughing
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  • laurajane
    laurajane Member Posts: 321
    edited August 2011

    Thanks for all of the support you gals have given me. I too toss and turn and feel a lot like you do Suze. I don't want to waste a minute of living. I'm on the Bipolar teeter totter and today is an up day. I swear this FC has turned me into an extreme nutcase. Down one day up the next and I don't have the excuse of steroids.  I'm also a narcissist "Its all about me", I can also fall under the term compulsive "Did I take my meds?", "Is that another lump?" "Whats that pain?" Hmm? I'm sure there are many other terms that I could fit into quite comfortably. But like I said today is going to be an up day or so I feel that way now. I'm happy that I feel good, have started my meds to fight this beast and I will embrace it today. I hope you guys have a good day too!

    Suze- I've never tried Ambien because of the nightmares Oh and also the warning about having sex and not remembering it, driving while asleep and using shap knives while cooking in my sleep were just a few of the possible SE warnings. Scared me!

    Kelban- I'm sending powerful, positive  thought waves that you can move into your cozy lakeside condo soon. I'm wishing you happiness in this new chapter of your life.

    Kmatthews- Great news. I love reading posts like yours.

    Painting- I often got yeast infections in my mouth while on chemo and  my onc gave me meds that cleared my mouth sores right up. You might check and see if that possibly is it. I know mouth sores are all different. Is your tongue coated white?

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited August 2011
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  • christina1961
    christina1961 Member Posts: 736
    edited August 2011

    I'm so happy for you, KS!  That is great news

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  • Luah
    Luah Member Posts: 1,541
    edited August 2011

    ksmathews: Excellent news! Go out and celebrate.

    Painting: ((((hugs)))). It WILL get better, promise. Hope your doc can help with something in the meantime. I swished 5 x daily with baking soda and water, but it sounds like you need something stronger.

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  • ksmatthews
    ksmatthews Member Posts: 812
    edited August 2011

    Painting I had to use a small blend of baking soda, peroxide and water.  It worked far better for me then the mouthrinse my dr had prescribed.  I hope your mouth feels better soon.  To me that was one of the worst SE.

    Thank you all for your nice words.  I hope it didn't seem like I was bragging, but I hope it gives everyone hope, that this disease can be beat.  I have faith that I beat it!

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  • Lovelyface
    Lovelyface Member Posts: 674
    edited August 2011

    ksmathews - Congratulations!  Great News!  Have a great day!  Enjoy, Celebrate!

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  • jenn3
    jenn3 Member Posts: 3,316
    edited August 2011

    Hi all......Last week was a rough week, with an outpatient procedure for my back (bone cement), chemo, then ending up in he hospital for 3 days with cellulitis in my arm (again).  This week is looking much better, but is busy because my DD#2 is going back to college this weekend.  Never ending........

    LJ - I was only on Xeloda for a short time.  I had just started on the Xeloda when the dr did some follow ups scans.  As it turns out the cancer was moving really fast in a short time frame.    He and I decided that I should be on a combo of chemos, not a single agent.  Xeloda was one of the chemos we considered, but he wanted to pair it with Taxol, which I just didn't want if I didn't have to, at least not yet.  In addition to the hair loss the Taxol SE's are pretty harsh and I just wasn't ready for it.  Which is what led me to Carbo/Gemzar.  I have heard mixed reviews on Xeloda, with most of the feedback saying that the SE's are tolerable, but the hands and feet are always a problem (some worse than others).

    Kelben - I am so terribly sorry to hear all that you're going through.  I am glad to hear that you're in a safe place and will soon be able to get a place of your own to enjoy with your dogs.  I wish you the best of luck (((hugs))).

    Painting - The first round with chemo I had a mouth full of sores on and off for months while on AC.  Recently I've started getting big painful ulcers, one or two at a time.  As soon as they start to heal another shows up - so frustrating.  I have medicine from the onc, but I think they need to run their course and may be caused my a low WBC.  Ahhhhhh......the joys of cancer.

    Jenn

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  • Lizardbeth1968
    Lizardbeth1968 Member Posts: 21
    edited August 2011

    Hello all, I was diagnosed in June 2011, triple negative with a 2.5 cm lump.  I had  BMX on June 29th and my regimen is four AC every three weeks. I have number two tomorrow.

    The anti nausea didn't work that great for me and I lost 13 pounds the first treatment. I'm tempted to tell him not to change anything, IE:  "I'm three chemo's away from my ideal weight", LOL.  Just kidding.... kind of.

    Other than that, but for a few mouth sores, once I hit a week after treatment, I'm 100 percent back to myself.

    Looking forward to being half done after tomorrow.

    Hugs to you all.

    Elizabeth Glass

    Overland Park, KS

    Age:  42

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  • Lizardbeth1968
    Lizardbeth1968 Member Posts: 21
    edited August 2011

    KS Matthews, CONGRATULATIONS!!!!

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  • laurajane
    laurajane Member Posts: 321
    edited August 2011

    Hi Lizard- Sory you are here but welcome. These lovely ladies have helped me so much the last year. I hope your treatments go smoothly with very few SE's. The AC was the worst for me so know that we all have done it and you can get through it also. It's rough I know but you can do it.

    Jenn- I am praying the carbo/gem works for you. I am glad I finally started something but I am also scared and hope the onc does quick followup scans. I have this bulge in my stomach left side that I asked her about yesterday but she said it was fine. It seems to be bigger today if it is as bad tomorrow I will call her for a followup. It's like I have a grapefruit in there. I can feel it when I walk and when I look in the mirror its obvious that it is so different from my left side. How did they find your mets. Did you have symptoms? How often are you getting scanned. I did carbo/gem as you know last Winter and I didn't think the SE"s were too bad. But I don't really remember. I know I was happy to have my hair growing back. I'm thinking of you. 

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  • Suze35
    Suze35 Member Posts: 1,045
    edited August 2011

    Painting -  Sorry about the mouth sores Frown.  That is a SE I mercifully escaped, I hope the doctor can get you something that works.

    ksmatthews - you aren't bragging!!  You are rightfully overjoyed - and I am so happy for you!  We all have our own paths to follow in this disease, and I am glad yours is going so well.

    jenn - I was sorry to read you had such a rough week last week.  I'm glad it is looking better this week. 

    LJ - I can empathize with the ups/downs.  I do okay mostly, but some days I just want to curl up in a ball and not move.  I still have mornings when I wake up and think, "this is my life??!!"  I heard all those SEs about Ambien also - my DH wouldn't complain about the sex, lol, but the sleep walking did concern me as I did it when I was a kid.  I only took it once - I felt really weird when falling asleep, it didn't keep me asleep, and I had horrible nightmares while I was asleep.  Not worth it.  I haven't had the hand/foot issues with Xeloda yet... there is a great thread on the Stage IV board for Xeloda takers that I post on, you might want to read through it a bit to get a better idea of what to expect.

    Which side is the bulge on?  Right or left?  The right side is where your liver is - but I can't imagine something would grow so fast that it wouldn't show on your PET then be the size of a grapefruit.  Same for the left side, although there isn't any organ there that should be of specific concern.  But definitely push your doctor if you aren't happy - maybe they can do a quick US for you??

    Lizard - welcome, although I am sorry you are here.  AC was the hardest for me as well.  Are you doing Taxol afterwards?  This is a great place to vent.

    ~~~~~

    So the great thing about Xeloda is that it is a pill - I don't need to go to the doctor or get any pre-meds, etc.  The bad thing is Xeloda is a pill - I can control when/how I take it.  And some days, it is SOOOOO tempting to just say, "you know, one skipped dose won't matter."  But I've been very good, and haven't done that!  It is starting to make me a bit nauseated, I'm on day 10 - and it wears me down.  But I'll be strong!

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  • MBJ
    MBJ Member Posts: 4,352
    edited August 2011

    Hello everyone!  It's taking me quite awhile to try and catch up here-so many posts!  Thank you everyone for your well wishes.  I have an ugly red scar on my nose from the 30 stitches but hopefully this will fad with time and lots of sunscreen and makeup.

    Laurajane:  I am sorry the trial fell through, but I am so happy they are starting you on the Xeloda and I hope this works for you!  I am hoping the swelling is just a side effect of the chemo.  There are natural supplements you can take while undergoing chemo that helps process the drugs in our system like Milk Thistle.  I wouldn't drink any alcohol until you are all clear, too, as this puts excess strain on your liver.  You can also take a look at LifeExtensions.com for suggestions to help prevent mets.  I did everything they suggested while undergoing chemo and I am thinking it helped.  Sending you a PM!  Big Hugs!!!

    Sleep Aids:  I take all sorts of combos to help with sleep:  Sublingual Melatonin is best as you get the most bang for your buck, 5HTP is awesome and I also sometimes take Tryptophan.  If I don't take this stuff I lie awake and sleep not a wink.  Also, I have a horrible back and when it goes out:  no sleep.  A quick adjustment from the chiropractor and I always sleep like a baby!

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  • MBJ
    MBJ Member Posts: 4,352
    edited August 2011

    Navymom:  I am using low dose bioidenticals for chemopause symptoms.  I feel that quality of life is more important then suffering.  Just trying to get the progesterone dose right.

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  • Suze35
    Suze35 Member Posts: 1,045
    edited August 2011

    MBJ - I'm glad to hear you are feeling better!  That is an awesome website, thanks!!

    You said you did everything they recommended - does that include the high dose Curcumin and Green Tea?  I know Dr. Block feels anti-oxidants are good to take during chemo... I'm doing Xeloda now, and do take some Curcumin (not in the doses recommended) and drink good quality green tea (2-3 cups) each day.  I am going to add in the fish oil and L-theanine.  I'm still bummed that Melatonin gives me headaches - maybe I'll try again, it really helped me sleep.

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  • Paintingmywaythru
    Paintingmywaythru Member Posts: 317
    edited August 2011

    Thanks all.. I have miracle mouthwash, nystatin swish, was on diflucan for 6 days, and have been using a steroid paste on all the other ulcers which have cleared up. This is a new one on the side of the tongue. My husband picked up and Rx for percoset for the pain and the doctor said I should call tomorrow to get some fluids on Friday jsut to be sure I am getting enough liquids. I agree, I think it is low WBC. Tired and need to rest but have work 9-4 tomorrow..off Friday but see the breast surgeon and get fluids nad then take my son and his buddies down to RI for an overnight party before I ahve an opening Saturday for a solo show. I am scared because this is jsut around when my WBC's dropped dramatically last time...

    Susan

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  • riley702
    riley702 Member Posts: 1,600
    edited August 2011

    I just saw on the evening news that in a (admittedly tiny) study published in the New England Journal of Medicine today, doctors genetically modified a patient's own T cells to recognize and attack their particular tumor (only 3 patients, all with chronic leukemia). Two have no sign of their leukemia a year out and the third had a partial but dramatic response and is stable.

    If this pans out, it could be expanded for use with other types of cancer. I know, I know - we've heard of lots of exciting studies that didn't deliver, but I'm going to be cautiously optimistic here.

    http://www.nejm.org/doi/full/10.1056/NEJMoa1103849

    http://www.medscape.com/viewarticle/747824

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1895050/

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  • Titan
    Titan Member Posts: 2,956
    edited August 2011

    Thanks Riley (still love your avator!)... with all the donations/walks/research grants etc..something has to happen soon...I just pray that it is not too late for our people...Oh yeah..I pray for a cure..but if only something could be found that good extend our lives...to be a normal length..I'm all for that too!

    You guys with mouth sores...are you chewing on an icy or ice cubes during infusions???

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  • Titan
    Titan Member Posts: 2,956
    edited August 2011

    Jenn3...man that sucks.....you are one strong lady...

    KS...no way you are bragging..we all need to share our good news...it gives us all hope when you post good news...we love it, love it love it.

    I ran 3 miles today..felt good...dang humidty is gone so it was great...I need to beat my time next Saturday from my last 5K..I'm going to take you all with me when I run...need you.

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  • TifJ
    TifJ Member Posts: 1,568
    edited August 2011

    Lizardbeth- Welcome. Unforntunately our Kansas City group is growing! I am in Harrisonville. Lived in OP for 17 years.

    KS- Great news!!

    MBJ-Hope your nose is better!!

    LJ and Suze- Hope the treatments are going well. I don't post too much, but think of you both often!

    Titan and Heidi- I was hoping sleep issues would gradually get better- maybe not?

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  • JoJo702
    JoJo702 Member Posts: 7
    edited August 2011

    New to the group.  I was diagnosed triple neg just a few weeks ago.  Getting 2nd opinion tomorrow at St. Louis Siteman Cancer Center.  Hoping to learn from you ladies.  Apparently I am a little older than the average gal diagnosed with triple neg.  I just turned 71.

    My daughter is on the boards, she was diagnosed at age 47, but her cancer was ER/PR +.  Different animal, I guess.  I've got alot of reading and lurking to do.  Thanks for having a place for me to come and learn and hopefully share.

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  • riley702
    riley702 Member Posts: 1,600
    edited August 2011

    Hi, JoJo andLizardBeth. I'm sorry you have to be here, but I look forward to chatting with you here.

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