Starting Chemo February 2009?

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

    Webbie and those of you finishing, I'm a Jan jewel so didn't chime in on this thread much, but wanted to reassure you it will get better.  Someone had once posted we'd start to feel better when our next chemo would have been due and we didn't go in.  Well, that came and went, and the next came and went I still felt terrible and that's when my onc got the non stop whine of when will I start feeling better and the answer be patient drove me out of my mind.  I didn't have the eyes as bad, apparantly with TC that's more common with dose dense, so can't comment on that.  The muscles take closer to 6 months, but I could start doing some of the things I wanted to do, like stairs in the house after about 5 weeks. (will take a lot longer to get it all back) Neuropathy escalated until 8 weeks.  Hair started in about 8 weeks--very slowly.  But, I will say the thing that made the biggest difference is somewheree between week 7-8 the black cloud started blowing away.  Hadn't relalized how little sun got through that thing. It really will get better, just so much slower then I had hoped, so must seem the same to some of you.  It will get better. 

    Hang in there, cyber hugs to all of you still going through this and starting to recover.   

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  • MicheleS
    MicheleS Member Posts: 937
    edited April 2009

    Kristine~ I wanted to post a quick post about large tumors... I read a paper just the other day that big tumors may metastasize less readily because they got so good at growing a good blood supply just where they sit.  Metastasis (sp?) is often triggered by a tumor that can't grow well where it is... so cells "break off" and travel to greener pastures.  So, just to give you some hope that your big-ass tumor *may* actually be not such a bad thing.  I'll look for the paper next time I'm at work.

    I'm off to chemo. ick.

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

    Well, I thought I was home and clear. But no. I have spent the last  three days in hospital. Mostly bored senseless, and in isolation!

    I felt unwell on Monday and my temperature was rising and over 38 C. So we took a trip into the ER at about 2:00pm. They were really busy - so much for having the Chemo card - we sat about an hour before a Dr saw us, then they took blood, and we sat another 3 hours in the waiting room before he called us back in. My WBC was really low - my neutrophil was less than 0.1. so they had to admit me. They gave me IV antibiotics, and every test they could think of to try and track down the infection. There were no isolation rooms available, so I ended up sitting on a stretcher in an ER isolation room for over 24 hours. Tuesday evening they got me into a room, and then by last night my counts were high enough and my fever had gone, so they sent me home. Nothing showed up in any of the tests, so no major infection. Best news is it won't delay my Chemo next week - i will just need the neutrophil shot afterwards.

    So, all in all a not fun experience. The silly thing is I felt fine the whole time, except a bit unwell on the Monday (but not THAT unwell - if I wasn't having Chemo it was the type of thing you would take Tylenol for  and forget about) Anyway, I am home now which is the main thing. 

    Anyway, i hope everyone has a nice day. I intend to spend mine hugging my kids!!

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  • MicheleS
    MicheleS Member Posts: 937
    edited April 2009

    Oh-no Kerry! Yuck! I hope you are better soon. I was wondering where you were (and was hoping that you were out enjoying life!).

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

    Hey Michelle - the whole funny thing is, apart from feeling a bit fluey on Monday, I really didn't feel that sick. Certainly not as bad as I have felt after Chemo!! But I think that with a low WBC you can get an out of control infection really fast, so they take it very seriously!

    Hope your Chemo goes OK today! One more closer to the end.

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

    Kerry~ I hope you continue to feel better.  I run random fevers after Chemo for no reason.  I normally find out that I have them because my mouth breaks out in sores and then I realize what happened.  I hope you stay out of the ER.

    I went out today flower shopping (even if it was cold) and had a blast.  My only worry was my wig falling off but I think I would have laughed if it happened.  I have gotten to the point to where I don't really care who sees my bald dome but I keep the wig on for the sake of my 6 yr. old and when its cold.  I even felt okay enough to put some make up on and got a compliment at Preschool about how nice I look (I must normally look like shit...lo...).  Gotta get back to PS for the pick up.   I swear all I do is drop offs and pick ups non-stop.

    Michele~ Here's wishing for a side effect free day.  I hope you take your basin but don't get to use it.

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  • kmn0701
    kmn0701 Member Posts: 117
    edited April 2009

    Dang Kerry! I was just wondering where you'd been too. Sorry you had to have a hospital stay, those are so not fun. Hope you're feeling much better by now & can enjoy some spring weather.

    Actually I think a Vegas trip is in order for everyone once we're all done with this garbage! Not in the middle of summer though! Too hot here then!

    Thinking of you today Michele & anyone else heading in for the big chair. {{{HUGS}}}

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  • susan13
    susan13 Member Posts: 732
    edited April 2009

    Hi Ladies,

    Web-Hang in there... there were days after my last chemo where I felt like I was going backwards instead of forward. This week is 6 weeks out of chemo and I am finally feeling better, even though this morning I had a little bit of a fever for some reason.  Besides hot flashes and not sleeping and allergies, that's really my only complaints. So hang in!

    Kerry-I was wondering where you were too... glad to see it wasn't anything to worry about and you are home, the best place on earth!

    Kristine-On starting the rads... my onc. had me wait at least 4 weeks after my last chemo,and I would totally recommend at least that much! I actually started 5 weeks after.

    Have a nice day everyone, or at least try to!

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  • Beverly11
    Beverly11 Member Posts: 443
    edited April 2009

    Good luck today Michelle! 

     Glad you are back home Kerry.  The more time I spend in the hospitol the scarier it seems somehow.  

    Take Care Everyone

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  • dmoore2009
    dmoore2009 Member Posts: 8
    edited April 2009

    Well today was my last A/C treatment!  I start my Taxotere in 3 weeks and do 4 rounds of it every three weeks.  Then finally surgery.  I am so ready to get this over with.  I hate feeling sick and being so tired all the time.  On top of that I had an upper respitory infection last week and just when I though I was through with it my sinuses go all infected I had a headache for three days.

    I also have had my right arm and hand swell up.  And even though I haven't had surgery yet to remove the lymph nodes they think I have lymphedema.  I had a chest ct yesterday and an ultrasound of my arm to rule out a blood clot.  Arm ultrasound was fine i get the ct results tomorrow when I see my surgeon.  Then if its okl I guess I get to wear a sleeve on my arm and I think therapy.  FUN FUN.  Things just seem to go from bad to worse.  Hope everyone else is having a better week than me.

     Well its time to take my meds feeling a little nauseas.  Wish everyone well.

    Diane

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  • sue50
    sue50 Member Posts: 61
    edited April 2009

    Hi Furies!

    Wow I was away a few days and so much has happened to you all!  Glad to see Michelle posting again! Congrats to everyone who's finishing. Love the hair growth pix and the koi pix. Also enjoyed Kerri's description of being a chemo expert but a rads virgin !

    My mom has just been diagnosed with Alzheimer's; I went with my brother to visit her for a few days and we took her to the doctor to be checked out. We had to take her car keys away, wow that was tough. There was salt in the sugar bowl, she couldn't remember how to access her voice mail, she couldn't tell us what day or even what Season it was! Amazing, she was just out in her garden an hour before, and she told the doc it was Autumn. We arranged for frequent visits/shopping trips with her housekeeper, and her friends are wonderfully attentive also.  She'll be staying in her home until we can arrange some assisted living. She is very angry with my brother and I for "doing this to her", but at least she is nice to her friends. Undecided

     Just had my 7th tx today, one more to go, yay!  My arm is a pincushion. I have no port so they poke me every time, and my veins are getting more fragile. Last time it took 3 tries. Today it took 4 tries and 2 nurses.  I helped by yelping when it hurt most,  argggh.

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

    Sorry - I have been MIA AGAIN.  I had my first treatment of Taxol last Wednesday.  By Saturday night I was screaming in pain.  I stayed on 1000 mg of Lortabs every 4 hours from Saturday night until Monday night.  I couldn't get out of bed due to being so sleepy with the Lortabs and feeling like someone hit me with a MAC truck.

    Finally by Tuesday I started feeling ok again.  Food is starting to taste better and I like chocolate again. 

    I haven't had any signs of neuropathy yet however my thumb nails and big toe nails are starting to change colors and are really sensitive.  I guess I shouldn't complain so much but I feel like I have been doing nothing but whining.  I was at a point after my last A/C treatment that I wanted to quit chemo for good, I didn't know if I could go through it any longer.

    I still haven't lost all my hair and I am seeing some regrowth on my scalp on the sides.  I am going to ask my oncologist on Wed if I can start taking Biotin for hair growth or if I need to wait until after I finish chemo which hopefully my last treatment will be May 27th if my body holds up.

    Surgery is going to be a piece of cake compared to this chemo crap.

    Still having major issues with my eyes burning and stinging so I am not getting on the computer much during the day but I am reading everyone of ya'lls posts!

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

    aw Sue 50 -

    Alzheimer's is so tough.  my dad had it and he turned into an absolute ogre.. still had his sense of humor tho.  he had been practically comatose and we were gathering nightly to talk with him and pray.. he hadn't talked for days.  i was holding his hand and telling him what a great dad he was yada yada and his eye popped open.. he looked at me and said "do you have a car?"  we were amazed.. i said "yeah"  i still have my volkswagen.. and he said :why don't you drive yourself home!"  ha ha.  unbelievebly those were his last words.. to me or to anyone.  i felt so privileged.. really. 

    good luck with your mom.

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  • webwriter
    webwriter Member Posts: 535
    edited April 2009

    Okay, ya'll. Back about 120 pages ago, when we are all still just starting out and thinking this thing was "doable?" (If I never hear that phrase again, it will be too soon! Survivable, yes. "Doable" sounds like 6 loads of laundry in a single day.) 

    That gas thing?

    NOW I get it!

    May all of you hanve an SE free day! 

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  • xpectmiracles
    xpectmiracles Member Posts: 439
    edited April 2009

    Hi everyone! Just dropping a quick note and letting you know I'm slowly getting better after my last, and final, treatment last Thursday. For the last couple of days I have been able to get out of the house. I even had a lunch date with my DH today!

    The pictures are some of the spring flowers in my garden. I hope they make each and every one of you smile!

    Cheryl
    Dx 10/2008, IDC, <1cm, Stage I, Grade 2, 0/7 nodes, ER+/PR+, HER2-

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

    Cheryl - what lovely flowers! Your garden must be beautiful in summer. All my plants are starting to come through, but they are only a couple of inches at best. We have some nice daffodils though.

    Sue - sorry about your Mum. It must be such a hard thing, Alzheimer's. I just read a book called "Still Alice", about a woman with early onset Alzheimer's. Frightening. It really helped me understand what it is like to slowly lose your grip on your mind. No fun at all. Apple - sorry too about your dad.

    Webbie - I was just thinking myself how "gung ho" we all were back at the beginning. Now we are just dragging our sorry, gassy arses to the finish line. But we are getting there. 

    Jancie - can't believe you are getting regrowth! I am getting balder and balder. My son said the cutest thing yesterday - "Mummy, your eyebrows are erasing!" I have about 6 hairs left on each side....and about 2 eyelashes!

    So I enjoyed a lovely day being back at home yesterday. Got LOTS of hugs.  My Husband took another day off and we just hung out most of the day. Nothing like being locked up in isolation to make you appreciate everything more.  Hope everyone enjoys their day today.

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  • MicheleS
    MicheleS Member Posts: 937
    edited April 2009

    Good morning everyone!

    I was buzzing away after yesterday's treatment.  Holy cow!!! I baked a pie (and then ate 1/2 of it) and then make yeast batter for homemade waffles for this morning.  The kids thought it was the weekend this am when they saw the waffle-maker out! LOL! That + 3 lads of laundry last night.  I finally took a xanax and went to bed.  I don't feel too bad yet, just have the "tinglies" on my head, face, and neck like I usually do.  I'm not nauseated so the emmend is working. I'm going to do to work from 11-3 assuming I stay upright.  DH will have to drive me... I'm too shakey to drive.

    Kerry~ I'm glad you are home.  I forget, do you have in expanders?  Are you going to get recon? The hair on my head is growing slooooowly but my eyebrows are coming out. My leg and chin hairs are also growing... how's *that* for annoying.

    Jancie~ Was it bone pain??? I'm so sorry you had to endure that.  This is just so unfair. Maybe they could give you a fentanyl patch to wear for the next round.  You'd be out-of-it (really, really stoned) and in bed (mostly asleep) for the days you were wearing it but you'd feel no pain.

    Web~ I'm super gassy... I can clear a room.  My 13 yr old used to fart non-stop around dh and I to piss us off (like coming *into* the room to let fly).  Now he doesn't dare 'cause he knows I'll "fire back" and mine are waaaay more toxic. LOL!

    Sue~ I'm sorry about your mom.  My friend is going through the same thing with her mom too.  However, the *worst* is for you... The patient is usually unaware of what is happening. {{{hugs}}}

    Apple~ I think what your Dad said is kind of cute in a demented sort of way.  He must have known deep down that *you* were the one to share with... even if he was being a grump.  You never did answer my question regarding how long you'll be getting chemo... Do tell!

    Cheryl~ I planted a veggie garden (very small) and the highlight of my day is to go outside and water it with DD.  I didn't get any annuals in the ground this year but I do have some calla (sp?) lilies coming up.  The azaleas and cammelias are done blooming but they were beautiful a few weeks ago.

    living4today~ Did you manage to not get admitted this time???? I've been thinking of you tons.

    Soooo... I'm waiting for my crash... If last week was any indication, Sat and Sun will be bad ('tho I'm DETERMINED to go to DS's soccer game tomorrow am).  I'm also on-call this weekend... grumble...

    love to everyone,

    Michele

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  • living4today
    living4today Member Posts: 215
    edited April 2009

    Good morning Everyone!  Yeah....no hospital admission this round of chemo! 

    Kerry--I so understand the "house arrest" and isolation.  I am one of these people who can never have too many friends or places to go, that has actually been one of the hardest things for me to cope with: not being as involved and active with others. 

    Michele--so glad to hear about your burst of energy and hope you don't have a crash this weekend.  I started taking the advil this morning, as I am feeling the pains starting.  Hope it is a quiet "call" weekend.

    Sue--Sorry about your mom, a few years ago I managed an alzheimer's unit--there is a special spot in my heart for those that battle this aweful disease.  If you ever just want to chat--pm me.

    Cheryl--thanks for the lovely pics, it gives us midwesterners hope that spring is a coming!

    To everyone else--hope you have a great weekend!

    Kim

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  • gcpommom
    gcpommom Member Posts: 883
    edited April 2009

    Good Morning All!

    Michele:  how did your treatment go?  I hope it went better this time :)

    Kerry:  glad you're ok.  I agree, the chemo card does not always mean anything at the ER, the only time I got back right away was when my chest hurt.  My eyebrows are gone, too, and some of the eyelashes.  I suck at using the brow powder, I need to go to one of those look good, feel good classes and learn how to do it. 

    Diane:  congrats on finishing AC.  I was so glad to be done with it and on to Taxol.  Hope you do well on the taxotere.  I've had slight swelling of my arm a couple of times, but it goes away so I don't know what it was all about.  I hope you don't have lymphedema, I didn't know you could get it without the nodes being removed.

    Sue:  One more tx, yea!  So sorry about your mom, I can imagine how hard that must be for your family. 

    Jancie:  Geez, that sounds really painful, and on your first treatment of Taxol.  My doc switched me to weekly Taxol, se's are much easier, so if it gets to be too much, maybe you could switch?  I haven't had any pain yet, some tenderness but that's it.  The eyes should stop stinging soon, I"m pretty sure that was from the AC, I haven't had problems with it since I started TAxol.

    Cheryl:  gorgeous flowers!  We've got a few things blooming here, but nothing like your garden!

    I went back to work yesterday, subbed for a half day, ran errands, and then my son's science fair after dinner----I was exhausted by 8pm.  I really crashed.  Got some sleep, though, and even though I am still tired, I'm off to some garage sales with my DD and DH.  I need to find some planter containers so I can grow some veggies out back.

    Hugs

    Judy

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  • gcpommom
    gcpommom Member Posts: 883
    edited April 2009

    Michele:  You posted while I was posting!  I am sooo glad to hear your tx went better this week, I was thinking about you yesterday.  You sound like me, way too much energy right after tx, but then crashing on the weekend.  But it kinda feels 'normal' to do all these things while we have the energy, even though we know we'll regret it later.  I am hoping that I won't crash as hard tomorrow, since my onc reduced my steroids this week. 

    Kim:  glad your tx went better this week!

    Hugs

    Judy

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  • xpectmiracles
    xpectmiracles Member Posts: 439
    edited April 2009

    Kerry "sorry, gassy arses"  I can't stop laughing!

    Michele, no nausea?  Wow, that's great!

    Hugs, everyone!

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

    Me - (to Michelle) i think i have 3 more months of chemo.  sigh.  but hopefully only 3 months more.  the onc prescribed 6 rounds  - one round being 3X a month with a week off. 

    Last summer  i received  4 dose-dense rounds of Adriamiacin etc.. then 4 dose dense taxols before my surgery which was Sep. 08.   ----then i did radiation.  after a scan, they found the supraclavicular (and new) axillary node lit up still, and started me on low doses of taxol.. 6 months altogether., after my radiation btw they told me i had a brain tumor and needed immediate surgery..

    omg------- preparing for that -  telling the kids, expecting possible disability, (maybe paralysis) and only less than 2 years to live was difficult to say the least.  i was pulling photos out of my files to use at my upcoming wake, changing pin numbers on bank accounts, signing wills.. it was a rough, rough 4 days... so very very sad to confront a looming death with the kids in mind.  However,  the brain surgeon emphatically declared it was benign but ordered another mri (which confirmed his thoughts.   after that, a little more chemo was very inconsequential.  apparently my cancer is pretty aggresive.. to have progression while undergoing treatment is not very common.. so we'll see.  i might be one of those gals who lives on chemo for the rest of her days.. hopefully everything will be clear and i can just go on a drug after this chemo is finished.  technically i'm not stage 4 but i'm very close. 

    My sister in law was diagnosed with BC 16 years ago.  3 years ago they found soft tissue, bone and other mets.. she's still traveling.  as if she were not sick at all. 

    i think ask myself  if i would trade my life for a longer duller one.. nope.  no way.

    i used to competitive cocktail waitress at a busy, busy joint.  my manager and the owner's son were younger Italians.  and they always use to say MaryBryde  - you'll live to be 100 and we'll all be dead.  One was shot accidentally.. boy was that tragic.. he had 3 kids and wife,  and the other died of prostrate cancer (ages 34 and 51 respectively).. you just never know. 

    my kids can cook.  they suck at cleaning  and will but hay - they have a great dad and lots of familial support.  i hate to think of them carrying on with their lives without me, but i often do...

     it's hard.  .

    what I really care about is learning organ literature.  it really pisses me off that i probably won't live long enough to conquer that gorgous bit of humanity.

    hopefully i'll get pretty far.  You'd think God would let me live for that.   Bach alone wrote about 1000 pieces,  some 30 pages long.

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  • MicheleS
    MicheleS Member Posts: 937
    edited April 2009

    Apple~ Do they think the brain tumor is related?  My kids PE teacher has a ginormous brain tumor that they removed (it was benign) and she was back to work like 2 weeks after her surgery... I couldn't believe how fast she recovered.  I don't know if you've ever gone to nosurrender. The site-owner whote the most amazing post about metsters... how they are like the marines.  You should go read it.  I'll keep praying that these next 3 rounds do the trick.  I keep hearing that Avastin is the key in a lot of agressive tumors. You're on that right??  I also wanted to let you know that your positive attitude is one of the reasons I've been able to lift my spirits and stop wallowing.  The post you wrote many pages back about LIVING resonated with me.  Thank you.

    http://www.nosurrenderbreastcancerhelp.org/

    Below is a diagram of the VEGF signalling pathway.  Avastin works to break that.  The cell membrane is the green line of circles.  The VEGF receptor is the "Y" lodged in the circle.  Avastin is an antibody that lodges in the "Y" and makes it so that the "activator"- the green-blue thing can't get into the receptor to activate it. You'll see at the bottom, the result of VEGF is to create angiogenesis (particilarly to fast growing stuff).  Just a little science for ya!

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

    Michelle - do you think i can understand that chart?

    hehLaughing

    i don't think the brain meningioma was related.. it would have changed between scans and it was very typical of the common meningiomas many people have.. (but don't know it)  Menginges is the lining of the brain..

    i have been feeling stupid lately.. but i'm hoping that's just the chemo.

    I'm on Avastin with my Taxol... if you count tumor (node) dissappearance, it seems to be working.  we can't feel them at all.    it makes my nose feel great oddly.. i've always had kind of sensitive sinuses (probably all the years of smoking).

    i'm glad you're feeling better.  pm me any time if you'd like.

    here'a picture of my scarves just for fun.

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  • xpectmiracles
    xpectmiracles Member Posts: 439
    edited April 2009

    (((Apple)))

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  • datadrudge
    datadrudge Member Posts: 28
    edited April 2009

    Apple -I believe God wants you to conquer the organ! Thank-you for sharing your story. My husband is a professional musician (guitar) and I am amateur (elec bass/violin, music minor with deeeep affection for music theory) Like Michelle I have found that your positive attitude has lifted me from the depths more than once. BTW, your scarves are beautiful.

    Michelle Love the chart --a nice visual to imagine! Anything with a chart like that must be fabulous. Can we all pretend we are brilliant and understand it...

    All -you are *all* in my thoughts and prayers! me too...

    Latest news on me. Recall that my fourth and last round of TC was cancelled on April 15. Saw oncologist yesterday and he did not want to do any further chemo because of my reactions (I still have some hives...) Wrote me a scrip for Tamoxifen. Did not adequately answer my questions about risk of not completing and other chemo options --not sure if I shared that I have never been comfortable with my onc and had planned I switching to another in the practice after chemo (just get through it...) My daughter, who was with me, was FURIOUS. I just continued to be courteous and thought, just get me out of here so I can seek another opinion. Couldn't sleep last night...today called around and made an appointment with another dr in a different practice for 2nd opinion next Tuesday. My original oncologist may well be correct but he has not inspired my confidence! If another onc says same thing, I will accept and move on.

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  • buddy1
    buddy1 Member Posts: 750
    edited April 2009

    EXPECT MIRACLES.  BEAUTIFUL.  BLEEDING HEARST ARE MY FAVORITE.

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  • datadrudge
    datadrudge Member Posts: 28
    edited April 2009
    living4today -Did you say you were switched to Abraxane --how have you done on it? Wondering if it is an option for me -I had vascular/lymphatic invasion and was told needed chemo so want to make sure every last cell is wiped out!
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  • dmoore2009
    dmoore2009 Member Posts: 8
    edited April 2009

    I start my first taxotere treatment in 3 weeks.  Can anyone tell me about the side effects they have had with this one.  I am feeling crappy after my last A/C getting ready to go to bed.

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  • MicheleS
    MicheleS Member Posts: 937
    edited April 2009

    datadrudge~ That's not Avastin's chart. LOL!  It is for angiogenesis in general.  I found it when putting together a grant this week.  Re chemo and your onc: I think you definately need a 2nd opinion.  Typically, abraxane is less allergenic.  It is albumin-bound and lipophillic... much, much easier to tolerate going in.  I think the SE (neuropathy, etc) are similar to the other T's but there are less allergic reactions.

    Diane~ I had a rough time with AC and have found taxol to be easier.  Kerry is on taxotere and is having some bone/joint pain... But, I think she's managing OK.  Maybe she'll post for you.  Most of the T's can cause allergic stuff, neuropathy, fatigue, and aches/pains.  Usually no nausea.  My favorite site for SE info is www.chemocare.com 

    Apple~ I love the scarfs!!!! I hope you didn't think I meant you are gonna be a metster.  But, when you mentioned being on chemo for life, I thought of that nosurrender post.  You are so not gonna get mets... I need you here to keep picking my sorry ass up when I get whiney.

    Goodnight everyone! I think the steriods are wearing off and the aches are coming.

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