Starting Chemo in May 07

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  • chemo072
    chemo072 Member Posts: 682
    edited June 2007
    Quote:


    I'm having such a hard time coping right now. I know I need to take this whole thing one hour, one day, one treatment at a time, but it's so overwhelming. I'm just finishing day 5, and I feel miserable. I had the pump taken out today--my onc's nurse thought that would probably help with my fatigue level, to not have so many drugs dripping in, but I feel the same or worse. Still nauseated, still exhausted, huge headache. I'm so sorry to whine! On my first cycle I was able to teach violin lessons by this time, and turned a huge corner on day 6. Tonight there was NO WAY I could teach, and I can't imagine feeling well enough by tomorrow. How can I get through 4 more of these?



    Aimster - Big big hugs....hope things turn around!! Today is day 6 for me too....and I feel like crap. Last time I think I worked on Day 6 and there are things that HAVE to get done today but I'm just feeling crummy. Shockingly so, I'd rather go back to bed and watch DVDs all day. So, the writing's on the wall - one hour at a time it is. Off to take a nap and hope things are better when I wake up.

    So hope you begin feeling better.....is there any little thing you can do to lift the spirits? Quality of life gets boiled down to small things sometimes...a warm bath, a cup of tea, a soft pillow, a clean house....creature comforts wherever we can find them.
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  • aimster1123
    aimster1123 Member Posts: 200
    edited June 2007
    Amya, I'm so sorry day 6 is bad for you too! I've been in bed for the day too--still nauseated, still feel like I'm about to have diarrhea although I haven't since last night, no appetite, dead tired. I don't know when it will end, I just hope before Sunday when my husband leaves for Brazil for 10 days. Yikes. I have a lots of help scheduled while he's gone, don't worry. All your suggestions were great--I do the bath thing, and one of the best seems to take an Ativan and a nap. I always feel good for about 5 minutes when I wake up, It's worth it!

    My onc wants me to go back to my surgeon and show him my port incision--says it isn't healing correctly as is. So the surgeon's nurse is supposed to call back to let me know if she can squeeze me in there today sometime. I'll have to drag myself there, I suppose.

    Kim, hair shave day is just awful, and that's OK. Let yourself cry over it, sweetie, if you want to. Great hubbies are not to be under-rated--I have one too and he reassured me SO MUCH while he did the shaving. You'll get through. Here are some positives from my end:

    --I love my bed--it's comfy and a place I like to be
    --My house is QUIET right now (kids are at a friends, mom left to go back home, which I was ready for)
    --You guys are here
    --God loves me
    --I get to stay with friends in town while dh goes to Brazil

    Love to all,

    Amy
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  • NeoPat
    NeoPat Member Posts: 102
    edited June 2007
    I'm freshly chemofied. Had my second treatment of A/C today. My white blood count was high, so I bought a pint of raspberries and ate the whole thing. I also bought cherries and bagged salad.

    Pat
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  • aimster1123
    aimster1123 Member Posts: 200
    edited June 2007
    Hi Pat,

    Hope this time goes well for you--what are your worst days? What is the relationship between raspberries, cherries, salad and wbc? I'm a little clueless!

    I called the onc's nurse AGAIN, and she said my onc gets back in town tomorrow and she'll talk to him about me and see if he has anything to suggest. Today I've just given in to the Ativan nap cycle and tried to enjoy it. It feels so good to sleep. Yesterday's "outing" was relatively unfruitful, so I'm not feeling too guilty about tdoay.

    Just curious, has any of you had family members visit right after tx?? My mom was here this time, and to be honest I just wished she were far, far away. Something about my mom seeing me feel bad made me SO uncomfortable. Just wondered if you guys had that experience or if you found it comforting to be around family. I think I prefer the way we did it for tx 1, with friends taking the kids away for the whole day each day until I felt better.

    Amy
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  • lizzzy
    lizzzy Member Posts: 285
    edited June 2007
    Quote:

    I'm freshly chemofied. Had my second treatment of A/C today. My white blood count was high, so I bought a pint of raspberries and ate the whole thing. I also bought cherries and bagged salad.

    Pat



    Hey Pat, good for you and I hope you stay feeling good!

    I have a question for you or anyone who can tell me: when do we start worrying about white blood cells? I had my cbc today and the nurse said I was ok, but when I looked at the printout the wbc was just below normal (3.9). Should I expect a crash or an improvement in the next week?
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  • lizzzy
    lizzzy Member Posts: 285
    edited June 2007
    Quote:


    Just curious, has any of you had family members visit right after tx?? My mom was here this time, and to be honest I just wished she were far, far away. Something about my mom seeing me feel bad made me SO uncomfortable. Just wondered if you guys had that experience or if you found it comforting to be around family. I think I prefer the way we did it for tx 1, with friends taking the kids away for the whole day each day until I felt better.

    Amy



    I haven't had any family around, just my husband, but my mother and sister call me every day. I think I end up worrying more about my mom because she is so worried so I'm glad she isn't hanging around.
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  • aimster1123
    aimster1123 Member Posts: 200
    edited June 2007
    Hey Liz,

    How far out from tx are you? On my first cycle, I had my counts checked on day 12 and they were very low--neutrophils should have been 1500-6500 and mine were 200. Yikes! RBC was low too, and the next day after I had the count done, I was WIPED OUT--too tired to do ANYTHING--and after that I steadily improved. So I theorized that that was my lowest day of all. I've heard that counts go their lowest anwhere from 7-14 days out, but I'm not 100% sure about that. Mine are getting checked on day 12 again, to see if Neulasta, etc. did its job. How are you feeling? Are you tired? Amy
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  • lizzzy
    lizzzy Member Posts: 285
    edited June 2007
    Amy,

    Today is day 8. My RBC is ok. I am a bit tired. I could probably take a nap just about now, but not wiped out just sluggish and sleepy. I did take Neupogen for 5 days so I wonder what they would have been without that!
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  • sherry35
    sherry35 Member Posts: 409
    edited June 2007
    Hi everyone, It's been a while since I posted. Welcome to everyone who is new. So sorry you had to join us.
    Today is day 14 from tx 1 of 6 FEC. My hair (pubes included) started falling out today. It's weird, I can't stop running my fingers through it. How long until I'm bald? Did anyone let it fall out or did everyone shave?
    Last week some specialist told me I had a blod clot in my vein in the armpit where they took the nodes from. I had an ultrasound today and no blood clot. The radiologist even showed me 3 small normal looking lymph nodes. Yeah ha. Where were they 3 months ago? So today was good news day. It's nice to get after the last 3 months of bad news.
    Anyway, i should run for now. Anyone know how Jen is doing? She hasn't posted since her bad day. Hope all is well.
    Prayers, Hugs, and Blessings
    Sherry
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  • aimster1123
    aimster1123 Member Posts: 200
    edited June 2007
    Hi Sherry,

    Glad you got some good news today. I had a wierd lump in the armpit where the nodes came out also, but it turned out to be a lymphocele--just a swollen collection of fluid and nothing to worry about. Nice for a change!

    I thought I would let my hair fall out, but after 3 days of it I was TOTALLY ready to shave. Maybe you can play it by ear and see how you feel each day.

    Liz, I bet without the Neupogen you'd be lower and more tired. Hopefully Neulasta is doing its job on me this time around.

    My onc gets back into town tomorrow and my nurse is going to ask him about my sloooooow recovery. I'm really curious if he'll have anything to suggest. At the very least I get to see him on Tuesday for my cbc. I also have to go see my surgeon's nurse tomorrow, to see why my port incision isn't healing right. Kind of curious about that. AND, we ordered a china hutch and buffet that are getting delivered tomorrow! That will be exciting.

    Amy
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  • chemo072
    chemo072 Member Posts: 682
    edited June 2007
    Ok, I know that going for a walk would make me feel loads better....but, not only is my sore throat back with a vengeance (non sequitor (sp?) sorry) but MY FEET HURT! What the heck, they are tender as all get out, it feels like the skin is going to peel or something?

    Anyone else have this? I'm hobbling around

    I know the skin in between my fingers hurt a few weeks back and peeled, and the onc said that was because of the chemo. But not sure about the feet thing....
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  • NeoPat
    NeoPat Member Posts: 102
    edited June 2007
    It's the day after my 2nd dd A/C and I still feel good. No nausea at all and don't have the red, flushed face that I had last time. Who knows how long it will last, but I'm enjoying it for now.

    Amy - We are not supposed to eat unpeeled fruit and uncooked vegetables when the WBC count is down. That is why I ate some when I learned that my count was 11. That was up even from my pre-treatment count of 6.5. Funny thing is that my platelets and RBCs were up some, too.

    It's a hard situation when ralatives want to come and help. You need to ask for what is best for you, but I understand about not wanting to hurt feelings. My sister and her family came for a visit when I was feeling rotten with both nausea and Neulasta pain. It was a nice diversion but they only started for 2.5 hours.

    I'm really sorry that chemo has hit you so hard, Amy. I hope that it gets better very soon.

    Liz - There was a problem and I didn't get my blood counts on the week between my treatments, but I have heard that counts are lowest between 7 and 14 days. I don't know how the shots change that, if at all.

    Sherry - Great to hear from you. My pubes started falling out on Tuesday (Day 14). Now it is Thusday and still no sign of head hair loss. I know that it is coming, though.

    I am going to call today to register for a Look Good, Feel Better program on Monday. Wouldn't want to be embarrassed by still having hair for that. LOL

    Pat
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  • kimvidito
    kimvidito Member Posts: 105
    edited June 2007
    Hi all
    Sherry I am on day 16 post chemo. I was holding on to my hair as long as I could. Yesterday, it was disgusting, falling out in clumps and I couldn't even touch my head. That was it. We had a balding ceremony last night. My daughter cut my hair short and my son gave me a mohawk. I think he enjoyed it too much LOL. Everyone laughed when my husband started to vacuum the hair off of me face, head and body. It was very liberating getting it done. My 14 years old was scared at first but by making it fun, she just got into it. My head is sensitive to sleep on. God your hair really protects all those bumps. When you can't stand the hair falling out anymore, that will be the time to shave. I was told that it's less stressful than watching it fall out every day.
    Good luck everyone
    Kim
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  • PDXLeeAnne
    PDXLeeAnne Member Posts: 119
    edited June 2007
    Hey all,

    I'm day 7 post tx 2, and I woke up this morning thinking that today HAS to be a better day. I've been so emotional (and my gut has ached, and I've had a headache) the last few days. I think its adjustment to my newly bald noggin, in combination with the off-steroid rollercoaster, but it has been a slog. I've got to maintain through the evening though, as it is my son's middle school band concert night... and the debut of the wig... lots of people who know about my bc but haven't seen me... ai yi yi!

    My docs don't check my blood in between chemo cycles, and they don't say not to eat raw foods, either, unless it would be to control the Big D. Maybe it's because of the Neulasta shot that they don't check? I eat a lot of fresh fruits and veggies - fresh pea pods are tasting so good right now... so far no problem.

    Relatives... I actually like it that my parents come to town (they live 3 hours away but have a little condo here) for my treatments. My dad has Parkinson's, and my mom already has a lot to deal with, but they are very insistent about coming to chemo with me. My dad likes the popsicles and the crackers! They stay for 3 or 4 days, putz around my house and garden, make sure I eat, and then go back home. I think my folks actually find it is easier on them to be here and see me first hand, rather than talk on the phone and not really know what it is all about. I find it lovely that they are here. My kids are at their dad's house during chemo and the week following, so it's usually just my parents and me and its a bonding experience and something I treasure. Now THIS week I also have a girlfriend visiting from NY AND my sister visiting from Amsterdam, but both are busy seeing their Portland friends so they aren't at the house all the time. I like the energy of their presence though, and I don't have to do anything to host them, so its been nice.

    Do you guys experience what I like to call the Bionic Smell-O-Vision? Geez its bizarre!! Everything smells so strongly. I know it only lasts a few days but its one of the (I think) weirdest side effects.

    And lastly, I went to see an acupuncturist yesterday, for the first time ever in my life. My docs recommended it. As strange as it was to have all those needles sticking out of me, I do feel better today, and I will continue to go a few times/week. Amanda, I think you do acupuncture - anyone else? And also Amanda, how are your feet?

    Liz, thanks for your fierce comments on my blog.

    Amy, I hope that you feel better today, and that you get good answers from your onc!

    All of you with the hair coming out - you'll feel better taking control of it and shaving, at least in my opinion...

    How are the 3 Cindys? Sunshine? Mandy? Pat still feeling good?

    Hugs,
    LeeAnne
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  • chumfry
    chumfry Member Posts: 642
    edited June 2007
    I hadn't been told not to eat fresh veggies, either, and I think that may have led to an excrutiating bout of what appeared to be food poisoning Monday night. I'd just gone back to work half-days Monday and I ate spinach on my Subway sandwich for lunch.

    The worst diarrhea in my life began at 7 p.m. and I was on the horn to the oncologist on call by 9 p.m. It was so bad, I was afraid I would have to go to the ER, for IV fluids if nothing else. I didn't get to sleep until 5 a.m. Tuesday and didn't go back to work until today. UGH!!!

    Tomorrow is my third of 12 weekly Taxol/Carboplatins, then I skip a week before starting up again. So far, the side-effects haven't been too bad. I'm a little queasy/tired, and have some tingling in my toes and fingers.

    Awaiting the Great Follicular Exodus, which *should* happen this weekend. I'm torn about making an appt to get it shaved. Not sure I want to shave until it's actually falling out, but think I'll have no patience to wait for an appt once it's falling. Sigh.

    I'm thinking about going to an actual barber shop, so they can buzz me short and then actually shave me clean. DH shaved me last time, but he was a nervous wreck about the possibility of nicking me. So I'm waffling. One way or another, though, I will be bald soon!
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  • chemo072
    chemo072 Member Posts: 682
    edited June 2007
    LeeAnne - the snap peas this time of year taste so good! It's so nice to find something that actually tastes good, oh my. Food in the chemoverse is very, very different. Peaches are working for me too. My WBC only gets tested every two weeks, right before chemo, but so far so good.

    And the bionic smell-o-vision, LOL, is out in full force. At one point I couldn't go into the acupuncturists office as they had cleaned with some lemon cleaner - no one else could smell it but it was so strong to me I had to wait outside.

    re: my feet - bright red and hurt like all get out. Going to call the oncs office very soon, though I doubt there's anything they can do, except maybe cortisone cream or some such? Not sure.

    Ah well -positives for the day:
    This time of chemo will pass.
    I slept well last night.
    I'm going into work today.
    My fiscal picture is getting a little better!
    Cancer Care awarded me $450 ($150 off the bat, and then $300 in prescrip. copay reimbursements)
    The CoPay Relief Fund awarded $2000 (of which I can get $500 in reimbursements and $1500 in future prescrip. copays)
    The Patient Access Network will hopefully pay co-insurance costs for chemo infusions; still working on that.
    I found a new scarf that I like!
    The roses and foxglove continue to be gorgeous. What a beautiful world it can be.

    Hugs to all,
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  • aimster1123
    aimster1123 Member Posts: 200
    edited June 2007
    Hey all,

    So sorry about the yuckiness people are having!! Amya, what is UP with the feet, sheesh!! I hope they can help you. Is that a Taxol thing? Sounds like it to my completely ignorant, I-surf-the-web mentality.

    CindyMN, MAN that must have been hideous!! Are you feeling OK now?

    I'm STILL nauseated today (day 8), but have a little more energy. My onc's nurse called and said that my doc suggested I try Marinol. It's related to marijuana (oh my gosh, I'm a junkie!! LOL!) but without the extra chemicals and impurities. It can give you wierd side effects, though (and I seem to be queen of those) so I'm supposed to try it when I'm ready to go to sleep tonight. I'm a little scared, but if it works that would be SO GOOD for the next treatment cycle. So my onc's nurse called it in to the pharm, and I'll pick it up later. Yikes. I'll let you know how it goes.

    Amy
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2007
    Hi everyone,

    I think I went a whole DAY without posting yesterday...didja miss me?:-)

    LeeAnne - isn't the bald thing a bitch? I was so mad at myself for letting it get to me emotionally - I felt so weak and thought of myself as SO above looks...I'm not a particularly pretty woman so I didn't think this would be a problem for me but it really was (and sometimes still is). I can't seem to do anything to my head right now to make myself feel genuinely pretty. It is getting better though - clearly, it's just a matter of getting used to the baldness and I know in the whole long term scheme of things...who the hell cares?

    Amy, I sure hope this new drug works for you - you have had FAR too rough of a time. You totally deserve a break!!

    CindyMN - so glad you're feeling better! It's amazing how efficient our bodies are of getting something out when they decide "everybody out of the pool!"

    AmyA - Great news on the financial situation - I'll bet that's a relief! I hope your feet get better fast - I've heard about peeling skin but can't remember what drug that SE is from? Your situation sounds different though - whatever the cause, I hope it's remedied quickly!

    My positives:

    I just finished an awesome run in our river valley in the not too hot sunshine and I even ran all the way up this long and steep hill!!! (I nearly keeled over at the top but I didn't stop on the way up) This makes me feel so strong and powerful and healthy!

    I am off to a conference for work this afternoon (just overnight until tomorrow) but I get to stay in a hotel room all by myself. I'll really try not to be homesick and wishing that my family were with me...I'm taking magazines and I am going to get a movie if there's anything good in the hotel! Then in the morning, I am going to treat myself to a nice breakfast and then I'm skipping out of the conference during lunch to have lunch with my best friend who lives in the city that I'm visiting!

    Yesterday at work, I organized an event and for almost the whole time, I actually forgot that I didn't have hair!! Usually I'm so self conscious and looking at people to see if they're looking at me...but I really did forget about it until someone said to me "I love your hat!"

    Have a great couple of days everyone. I am up for treatment #3 on Tuesday (already!!)

    Be well.
    Mandy
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  • lizzzy
    lizzzy Member Posts: 285
    edited June 2007
    Hey Mandy, good for you. You inspired me so I'm going to head out to the gym right now for a few miles.

    LeeAnne, bionic smell-o-vision! awesome! you have a way with words that makes me so jealous I could just rip my dictionary in half! I have experienced this but it just makes me wish I had enough energy to clean the house!

    I've been avoiding fresh veggies and fruits for the most part. I think it may be important at the restaurants not to eat their raw stuff but at home I think if we wash well--I use a veggie wash--we would probably be ok. My chemo nurse did actually warn me about fresh veggies. Anyway frozen are probably just as healthy.

    Hope Sunshine and some of the others we haven't heard from in a while are ok.
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  • lizzzy
    lizzzy Member Posts: 285
    edited June 2007

    Hormones! My onc just called and told me I'm ER+/Pr+. So what does this mean--besides I now may have another drug to take later. Do you change what you eat? Is soy ok? I think this is good news, but not sure what all the ramifications are.

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  • sunshine123
    sunshine123 Member Posts: 31
    edited June 2007
    Hi everyone. I had a rough weekend after getting the biopsy results last Friday, but I'm finally starting to come around.

    I'm 8 days out from my 2nd dose of A/C, and I'm feeling human again, which really helps put a better perspective on things.

    Yesterday I went back to my surgeon and she did a really wide excisional biopsy since my margins weren't clear on the last biopsy. I'm hoping and praying that the margins are clean this time and all the cancer cells are GONE. I talked to my onc today, and the plan is to let me finish the last 2 doses of A/C, and then do rads, and finish up with Taxol. That makes sense to me.

    In the meantime, my mom is here with me and she's been a big help. We go shopping and paint our nails and watch movies and play cards...it's nice to have someone to pass the time with.

    I hope you all are having a good afternoon. Big hugs to everyone.

    sarah
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  • lizzzy
    lizzzy Member Posts: 285
    edited June 2007

    Sarah, So glad to see you're back. We were worried. Good to hear you're enjoying visiting with your Mom and feeling better!

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  • lwy
    lwy Member Posts: 153
    edited June 2007
    Liz,
    Being hormone positive isn't necessarily a bad thing, they have many drugs out there to treat hormone positive breast cancer.
    As far as what to eat, or not to eat, it is very controversial, but several of my friends are dieticians/nutritionist and tell me to avoid tofu and soy products. I have never been one to buy organic food before, but now I try to buy hormone free milk and hormone free chicken.
    Leslie
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  • lnmshoes
    lnmshoes Member Posts: 17
    edited June 2007
    Hi all,
    I can't tell you what this thread means to me. I don't get a chance to get here daily. Get pretty wiped out working fulltime by the time I get home. I am on day 9 from my second DD a/c tx. My hair is definely falling out now, I shaved over memorial weekend just to give myself a long weekend to get used to it. I noticed by pubs falling out first last weekend - very strange... I have been wearing a wig to work each day and by the time I get home I am so ready to get it OFF! The SEs have been pretty mild for me, slight constipation so I have been eating more fiber, drinking lots of water. My teeth or gums hurt weird.

    Positives: I went with my son to purchase an engagement ring for his girlfriend. so exciting, they have been dating for 8 years so it is about time! Pretty funny too, the sales girl thought I was the bride to be, could not believe I was the mom. I could have hugged her.

    Hugs to all,
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  • nosurrender
    nosurrender Member Posts: 2,019
    edited June 2007
    Hi All,
    I just wanted to check in and report that yesterday I finished my last Adriamycin.
    Next stop: Taxol.

    I had the worst nausea with this last one than all three combined.

    I got my nuelasta shot so I know what happens next.

    I hope you are all holding up ok.

    Love,
    g
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2007

    Hope you don't mind me "butting" in. But, g, I have been wondering how you are doing! So glad to know that things seem okay/on schedule. You made it through the A, you will make it through the rest. Hang in there, sister...I'm rootin' for ya!

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  • aimster1123
    aimster1123 Member Posts: 200
    edited June 2007
    Hey girls,

    YAY, YAHOO, YIPPEEEEE!!!!!!!! I TURNED THE CORNER!!!!!!!!!! Finally!! Day 8, between 4 and 6pm I SUDDENLY felt HUMAN!! I don't know what happened! Still tired, of course, but THIS I can deal with! I haven't felt nauseated since about 4pm. I need NO more positive thing than this today. Gosh, what a RELIEF! Too bad I spent the $80-some on Marinol, but at least now I'll have it to try next time around, and I can tell you if it works for me or not. I see my onc on Tuesday for CBC and, I'm sure, MAJOR conversations about how to make next cycle better.

    Welcome to all those who I hadn't met before. Sarah, hoping for good news on your margins this time. What a road this must have been for you. I'm glad you enjoyed your mom being here. I feel bad that mine is not a help to me, but I think I just have to face it and deal with telling her that it's not the best solution for me during tx.

    Liz, I've always understood hormone+ to be a really good thing, although it does mean that you should do anti-hormone drug treatments which are not supposed to be fun. But it makes the cancer more treatable, as I understand it.

    Leslie, do you know why the "no tofu" thing? I ask because I ADORE tofu, and it's always been one of those guilt-free foods for me. Do I really have to give it up. ?

    Amy
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  • cinrae123
    cinrae123 Member Posts: 419
    edited June 2007
    okie dokie gals,,,,,,,,,,today is 4th day from 2nd chemo. Had neulasta on Tues. Felt ok until this morning,,,,lil achey, sore throat, headache,,,,,,,,,and just not my usual self. Family says I am grumpy,,,,,,,,,,,,,geeeeeeeee really? I wonder why? lol I've been able to get some good nights sleep thanx to Ativan. It has worked miracles for me. lol Counting the days till Aug 25th,,,,,,,,,,,,this just can not come fast enough for me. I look in the mirror and omg,,,,,,,,I say,,,,,,,,,,who in the world is that? It is just so depressing sometimes,,,,,,,,,sometimes it just seems so unreal to me that I am where I am.
    Take care all,,,,,,,,have a good weekend
    cindy
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  • cinrae123
    cinrae123 Member Posts: 419
    edited June 2007
    Anybody have a weird taste in their mouth. My tummy says I am hungry,,,,,,,but everything I eat tastes like nothing to me. The burning went away,,,,,,but I have no taste for anything. Dont think the biotine is working on that either. Guess its just another wonderful side effect to this chemo crap, huh?
    Have a good weekend,,,,,,Cindy
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  • chemo072
    chemo072 Member Posts: 682
    edited June 2007
    Quote:

    Hormones! My onc just called and told me I'm ER+/Pr+. So what does this mean--besides I now may have another drug to take later. Do you change what you eat? Is soy ok? I think this is good news, but not sure what all the ramifications are.



    I'm ER+, PR+ too and I was told no soy. Which BTW means reading a ton of labels - it's in so many foods!
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