Starting Chemo February 2009?

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  • jancie
    jancie Member Posts: 2,631
    edited March 2009
    Jenns, toward the top of the page you will see a box that says "My home" - click that on and it will take you to your profile.  Look for the red box (small) that says edit my diagnosis. Click on that box and then answer the questions and hit save/submit or whaever it says at the bottom after you have answered the questions.
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  • MicheleS
    MicheleS Member Posts: 937
    edited March 2009

    Jancie~ My eyes are bugging me too.  Same thing: they hurt when reading... Plus my eyelids are puffy.

    As for reducing risk post-chemo: I get what Jancie is saying but I'm the other end of the spectrum.Tongue out I plan to become essentially vegan (with the addition of yogurt or cottage cheese to help with protein intake) and to exercise like a crazed fool.  My diet will be lowfat and low glycemic. I've mostly given up caffiene already (with the exception of the occasional coke post-chemo) and artificial sweeteners.  My teflon pans are gone too.  All produce and dairy is already organic.  With all of that said... I was *mostly* vegetarian before and *mostly* bought organic anyway. I also used to exercise (walking mostly) 3-5 days a week.  For me though... I*need* to feel some sembelance (sp?) of control even if there's no real proof it will work.  Also, though, I'm triple negative so I don't get the "safety net" tamoxifen or herceptin.

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  • apple
    apple Member Posts: 7,799
    edited March 2009

    thrush is a fungal infection and can be serious.. chemo gals should treat it promptly.

    "Oral thrush is a condition in which the fungus Candida albicans accumulates on the lining of your mouth.

    Oral thrush causes creamy white lesions, usually on your tongue or inner cheeks. The lesions can be painful and may bleed slightly when you scrape them or brush your teeth. Sometimes oral thrush may spread to the roof of your mouth, your gums, tonsils or the back of your throat.

    Although oral thrush can affect anyone, it occurs most often in babies and toddlers, older adults, and in people with compromised immune systems. Oral thrush is a minor problem for healthy children and adults, but for those with weakened immune systems, symptoms of oral thrush may be more severe, widespread and difficult to control."

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  • webwriter
    webwriter Member Posts: 535
    edited March 2009

    Auntie A has officially put me on hospital watch. My right lung isn't functioning properly and the spread in my blood pressure is too low. Also have early signs of thrush. Guess I can stop kicking myself for being a wuss now. Will keep you posted.

    May all of you have an SE free day and a VERY, VERY sleepful night!

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  • apple
    apple Member Posts: 7,799
    edited March 2009

    JAncie - I call them cute tips on purpose for a joke.. you know, bein silly.

    i bought my glutamine from ebay - 1000 grams fro 32 bucks.  - it's extraordinarily expensive othewise.

    i sure helps  - i can monitor it by the hour.. and i (miss pianist) wish to totally avoid long term affects. - you should take it with B6. I talked with my onc and the pharmacist and they both said that women are helped or not helped by it.  I am possitively obsessed with the function of my hands tho and keep charts (of a sort).

    say hay to your horse for me

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  • susan13
    susan13 Member Posts: 732
    edited March 2009

    Jancie-Thanks.  I actually had some hair growing after my AC was done cause I had a chemo "break" when I had my blat.mast.  I have some bald spots now on the Taxotere but it doesn't stop coming out after each tx.  Just hope it comes back quickly once this crap is out of my body.

    I love spices too Mexican and Indian... garlic... oh boy... sure hope this SE goes away soon!  I love food too much to not taste anything!!

    My onc. checks my mouth every week at my visit, maybe he's checking for this thrush thing?  I do recall hearing the word after I had my daughter, didn't know adults could get it too!  I will ask him about my taste buds, or lack of, when I see him Thursday.

    The eye thing.. my eyesight used to be wonderful until chemo.  The AC tossed that out the window. Onc. says it'll come back so no need to get reading glasses... but when?!?  ugg.

    Web-Oh my gosh... I hope you are ok!

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  • MicheleS
    MicheleS Member Posts: 937
    edited March 2009

    Web~ Why don't you go in and get checked by your onc (or 1 in the practice).  You might save yourself an ER visit after hours...

    Apple~  I'm planning to do the l-glutamine and B6 during my taxol.  Do you think I should start ahead of time or just wait 'till my 1st treatment?

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  • apple
    apple Member Posts: 7,799
    edited March 2009

    Michele - i don't know from my experience that there is a preventive factor.  what i notice is that about 30 minutes after taking it, and for about 4 hours, my hands feel normal (i take the recommended 10 ml (2 rounded teaspoons)= 3 times daily.  i am trying to just take it on days 1 - 5 of my treatment when it seems to be worse.. that's when it helps me.  my onc was unsure of it's preventative helpfulness and she said there is little way of knowing from anecdote whether or not it is a worthwhile preventative measure.

    you can google neuropathy and glutamine and read some studies that suggest that it significantly helps reduce neuropathy.

    i certainly think so from my experience.  if i forget to take it i definitely notice discomfort and will wake up with swollen 'unfeeling' fingertips.

    i

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  • webwriter
    webwriter Member Posts: 535
    edited March 2009

    Thanx guys. We're waiting on the Onco now. (For those that don't know, Auntie A is a highly experienced palliative care nurse.) She says I can stay home unless I spike a fever or am not better by Wednesday. Onco will call in thrush meds and antibiotics and we'll go from there. She's worried about my lungs, so if Onco panics too I'll be admitted later today. Keep your fingers crossed. I don't think I'm in any real danger, Auntie A wouldn't stand for it, but it could be a long icky week. At least now I know it wasn't all in my head, eh? ;)

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  • Britt
    Britt Member Posts: 731
    edited March 2009

    Webbie -

    Praying for you, darling - hang in there!  Please keep me posted - I sent you a PM.

    Xena

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  • jancie
    jancie Member Posts: 2,631
    edited March 2009

    Quick question - this may be TMI for some people.

    I mentioned that I got my period 11 days after the last one.  This one has been going on since Thursday is very heavy to the point now where I had a massive blood clot come out.  That is not normal for me and now I am worried.  I don't know if I should call my regular doctor (whom I have only seen twice now) or should I call the oncology department.  Any ideas?

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  • jancie
    jancie Member Posts: 2,631
    edited March 2009

    (((( MicheleS)))))  I get what you are saying also!

    Webbie - Have you had problems before with your lung prior to chemo?  Dang girl - you have had it rough!  Worried about you so please check in regularly!

    Apple -  Is Glutamine and Glucosomine related?  I just wonder because we give horses Glucosomine as joint supplements for those that are arthritic and other joint issues.  I plan on taking it along with B6 prior to Taxol.  Even if it is not proven that it works as a preventative, I can't imagine that it would do any harm to go ahead and get on a regimen.

    Susan13 - my eyesight started going when I turned 40 - I found out my arms weren't long enough - I can't focus up close.  Every year I have to get stronger reading glasses.  Right now I am reading with 2.0 magnification.

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  • webwriter
    webwriter Member Posts: 535
    edited March 2009

    Thanx again ya'll. We're on the way to Onco now. Doc on call doesn't want to play with the lung. Worried about pneumonia. No prior issues. Just haven't been breathing right the last couple of days. Auntie A says, "Duh. Your right lung sounds full and your left is getting there." At least we know and can get on top of it. CBC will tell some of the story when we get there. Hopefully, no admission. Just home to my crash pad with even more drugs. 

    Jancie, I had a period on day one of TX and have spotting with every TX since, but no period. It won't hurt to call your Onco. I'm learning to do that. haha!

    Will keep you posted as I can. If you don't hear, don't worry tho. It will only mean I was admitted and am getting the drugs in an IV instead of pills.  Will check in as soon as I can. Hang in there ya'll. If I can, you can!

    Oh yeah, and my eyes are twitching. Don't like to stay focused on books or pc or anything. Guess it's one of those things they don't put on the lists but is reasonably common.

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  • xpectmiracles
    xpectmiracles Member Posts: 439
    edited March 2009

    Jenns, welcome to our crazy group! I'm happy to have you aboard!

    It is strange for me to read posts sharing about medical professionals and hospitals. I am an RN in a hospital and I feel like a voyeur! Wink Now I can see both sides of the coin.

    Alert to fellow BSG fans: Please don't give out any spoilers for those of us who watch it after the season is out on video! The last episode I watched was when we found out who the "sleeper agents" were. Ooo, I love this series! From what has been shared already, I will not be disappointed about this seasons episodes.

    Buddy1 I don't think lemon in your water is anything to worry about. I can relate to the water drinking dilemma. I hate the taste of tap water. What I have been drinking is Brita filtered water and flavored seltzer water. The seltzer is not sweetened and has fizz like soda. Then,even after it goes flat there is still some flavor.

    I want to let all of you who are having difficulty sleeping in on a strategy I have been using in addition to sleeping pills. I have music on my ipod from Brain Sync. It is brain wave therapy. The music elicits sounds that are of the same brain wave frequency as the sleep state. It is called Sound Sleep. It works for me very well--and it's drug free! The website is www.brainsync.com

    Janciepassing  large blood clots is definitely something I would inform your onc about.

    (((webwriter)))

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  • MicheleS
    MicheleS Member Posts: 937
    edited March 2009

    Jancie~  Call your onc.  You are paying lots of $$$ for him/her to take care of you... 

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  • flmomof3
    flmomof3 Member Posts: 28
    edited March 2009

    Still Me, Kerry and Jancie,

    I too have my period, heavier than ever but with none of the warning signs...I went about 6 weeks without one, and thought this would be  one of two benefits of chemo...the other being no unwanted hair to shave, bleach or tweeze!

    JancieSunlight bothers me so I am religiously wearing my sunglasses..I also have an ongoing twitch in my right eye so reading is hard, and tearing in my left eye occassionally....oh joy! Too funny, I am feeling pretty good but when I write it all down I sound pretty pathetic!

    I had the white tongue and no tastebuds but it has cleared up this round at about 2 weeks post chemo and I can taste somewhat again...i am using the biotene mouthwash which seems to help but i think time without chemo was the only cure...I am due for round 3 thursday so I will eat voraciously until then!

    Jenn welcome...sorry you didn't find this site sooner but we are all here for you now!!! What a lousy 44th birthday! You need to plan something spectacular for your 45th!

    Love to all...get some sunshine today..I swear it helps...not sure why but it does!!

    Sue from Fl

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  • webwriter
    webwriter Member Posts: 535
    edited March 2009

    Stay tuned for a major rant. It seems that my "poor" mother has been down at my brother's crying for days because I'm dying. He called me in the middle of my doctor's appointment. She just left here on Tuesday! She hasn't called me, my husband OR Auntie A to see how I'm doing. No email, no blog posts, no nothing. I swear by all that is holy she has got to be the most selfish person on the planet and I'm too sick to deal with her crap anymore. Toxic drugs or toxic people. Not both.

    The good news is we have a script for an inhaler, an antibiotic and thrush rinse. I'm going to live--and so far, don't have to be admitted.

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  • MicheleS
    MicheleS Member Posts: 937
    edited March 2009
    Web~  Does she know my dad?Tongue out Sounds like they were cut from the same cloth... He was here this past weekend; don't even have the energy to post about the drama.  Glad you are OK.  Go home and rest up!   Oh~ I stopped by to see Kathei when she was getting her infusion.  She's such a nice person... really sweet.  We really do need to meet up when all 3 of us are feeling well. Ha! Like that'll happen anytime soon!
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  • susan13
    susan13 Member Posts: 732
    edited March 2009

    Jancie,

    I had the same issue with my period after my 2nd AC.  Called my onc. and he said that sometimes it goes either way... our periods will stop all together or they will get worse (cause of chemo).  I called my ob/gyn and he told me the same, and said that maybe the heavyness/clotting is the end to the period.  So I would say to keep an eye out and if you are clotting baseballs then definitely get to a doc. Hope it gets better!

    Sue

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  • flmomof3
    flmomof3 Member Posts: 28
    edited March 2009

    Webwriter,

    so glad you are going to be o.k....I worry when you don't chime in every day!!! take care of yourself first and let your brother deal with your crazy mother another day!

    my mom thinks i telepathically know she is thinking about me constantly and won't call me....FOR WEEKS AT A TIME!!!!!!!!!!!!!!!  We need to go out for a drink and share Mom stories!!!Please take your meds and get some rest!!!

    Love and hugs Sue from fl

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  • elizzim
    elizzim Member Posts: 146
    edited March 2009

    Webbie - can't believe all you're dealing with! I don't know your mother, but the profile sounds familiar..."concerned" about you just enough to be destructive! That's all you need to hear right now - that you're "dying"! What a ridiculous thing to say!

    You need all your energies for healing right now. Just put it on your "shelf" - the place where you put things TRULY out of your mind for the time being, to be dealt with later.

    I'm glad you're armed with the meds you need now, and can rest and get better. Hopefully, you'll avoid being admitted. But just do whatever it takes to rest and heal right now. Sending hugs to you...I know you'll feel better soon.

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited March 2009

    Webbie - so sorry you are soooo sick. I will echo everyone else in telling you to go to bed, take your meds, and rest! Sounds like you are in good hands with Auntie A! Your mother sounds a bit like my MIL - she already has me dead and buried...My Mum on the other hand is in total denial that I even have cancer! Go figure.

     Lovely spring day here today, the kids and I have been outside all afternoon. Just lovely. AND we have shoots! 

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  • apple
    apple Member Posts: 7,799
    edited March 2009

    so my mom in her dotage smiled at me and said.

    "i'm so glad you are bald again.  it reminds me of when you were a baby.  those were the happest days of my whole life"

    i love my mom  - adore her. and I find her growing senility absolutely charming.

    She was quite difficult to live with when she had her full wits about her.

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited March 2009

    Webbie I hope you are feeling better.

    On the Mom front when I got my hair cut shorter my Mom called and said "boy I bet you feel empty".  I finally had to say something to her about thinking before she said things. 

    I had treatment #3 today so I am half-way.  Hopefully I will be free from SE this time.  This treatment was different this time I came home thinking that I was going to sleep but I felt fine once I got home (very odd). 

    I am going on Wed. for a bone scan because my back hurts (they think it is from my wonderful expanders) but just to be sure I am going.  How bad is the injection for this test ??  I am scared to go back to nuclear Medicine after the sentinel node biospy. 

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  • ktym
    ktym Member Posts: 2,637
    edited March 2009

    Apple: that warmed my heart  Bless your Mom.

    webwriter: so happy you weren't admitted!  So, since you're going to be ok, I'll say this, dont' ever try and call yourself a wimp again!  You are doing a very hard 6 rounds of dose dense chemo!  So, remember how strong you have been, go home and rest please.  Ignore any negative throughts and influences right now.  You're right, you can do toxic drugs, but not toxic drugs and toxic people.  Stick with your husband, little monkey and Aunti A. right now.  We started posting about the same time, even if your chemo started a little later then mine, always thinking of you.  

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited March 2009
    Jamieh - just to let you know that a bone scan isn't so bad. They inject the dye into you, you go away for a couple of hours, you are supposed to drink a lot to get the dye out of your system, then you go back. They lie you on a fairly thin bed and strap you down so you don't move. Then they leave you and the machine is automatic and scans your body piece by piece. It is open, not like an MRI, and they played music for me too. The worst thing I found was needing to pee by the end of it. I didn't find the injection any worse than giving blood.  You will be fine, and it will be very reassuring when it comes back negative.
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  • Denali
    Denali Member Posts: 347
    edited March 2009

    Jenns:  To post your diagnosis go to My Home at the top of the screen and then click on 'edit diagnosis.'  I don't know about Taxol, but I have no symptoms from Herceptin, which I get every week.

    I'm having trouble with watery eyes too!!  Which made it very difficult this morning when I attended the Look Good, Feel Better class and tried to put on eye make up!  The class was wonderful! We all had fun with our new make up and got to play with wigs of different colors and styles. We got a free wig too! Amazing! 

    But most important we learned the correct response when some dufus asks us, "Is that a wig?"

    We are to reply with, "Have you gained 20 pounds?!"

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited March 2009

    Love it!

    Also a great answer to the "and what is your prognosis?" question!!

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  • calgal1943
    calgal1943 Member Posts: 11
    edited March 2009

    Hi everyone. Has Been awhile since posting. I have been reading tho. Losing loved ones kinda brought back grief. I lost a grandchild a little over a year ago so dealt with that. Soo glad to see others going through family drama. That was my next dilema. Kids fighting over who was stuck with me. I am probably the oldest one here. Will be  66 on Apr 1. Great grandmother of 2. Had 2nd AC lst Frid and been sleepwalking ever since. Have started asking friends to come help. Hard for me to do. But kids still not coming around and I live alone. And onc told me surgeon was wrong in putting me at stage 2 I AM A STAGE IIIA because of so many nodes.Have really depended on you gals for info and inspiration, Thanks, and to all of you having  such a rough time I send love and hugs and good wishes and all that stuff

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited March 2009

    Thank you Kerry I was a little worried after the nipple injections that no one warned me about.

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