Starting Chemo, November 2013 Group

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  • audra67
    audra67 Member Posts: 521
    edited December 2013

    I am eating salads even...should I not be??? I LOVE salads....we use a spray wash and let it sit then rinse it off well....

    I have even eaten them at a restaurant....(hoping they wash well)...

    Question:  I asked my nurse yesterday about the nadir and if neulasta meant I could go out around crowds more as it boosts my wbc etc...she said,  no.  She said I still should avoid crowds and sick people...so what is the shot for??? Just so it doesn't bottom out completely?  I thought it gave a little extra boost and protection so we could go be normal???


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  • ellenkc
    ellenkc Member Posts: 173
    edited December 2013

    Wally, I haven't tried the coffee drink hot, but give it a shot. I would imagine the only issue would be that you don't want to boil the milk. Course if you steamed the milk, you'd have a latte, and those are not so bad as long as you go for nonfat. A Starbucks 16 oz. nonfat latte is 130 calories. 

    Ellen

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  • inks
    inks Member Posts: 746
    edited December 2013

    auda67 - I have been eating salads as well. I think some people like to go overboard. When I was pregnant some people told me that I should not be eating lunch meats either (botulism). When there have been some issues with cantaloupes or spinach being contaminated it does seem to hit people with compromised immune systems the worst. But my MO never told me I could not eat fresh stuff. Neither did the handout from ACS that they gave me.

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  • audra67
    audra67 Member Posts: 521
    edited December 2013

    PHEW, thanks inks!  I am over paranoid enough, just trying to get vitamins and lots of good blood cells!

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  • VirginiaNJ
    VirginiaNJ Member Posts: 634
    edited December 2013

    thank you Pat :) I love the Weight Watchers program...  Safely this is my THIRD time losing more than 50 lbs. I am hoping that I can keep it off once and for all thus time.

    I never avoided raw foods (well I'm not eating sushi while on chemo) - was not told not too.

    I'm also not avoiding crowds.  Feeling great this week so I have been Christmas shopping every day.  Also, last night was my company holiday party at a real swanky catering facility - went to the party!!!  Had an awesome time but did ask everyone not to hug and kiss me which was soooooooooo hard bc I am a super affectionate person.  Had such an outpouring of love from my coworkers......was so glad I went.....

    Sorry to all those suffering SE's.  I feel very blessed that I am tolerating this chemo as well as I did the round in 07.  

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  • wrenn
    wrenn Member Posts: 2,707
    edited December 2013

    audra a few days after my neulasta shot my counts were above normal. I am surprised to hear that crowds should still be avoided but i guess we really are still weakened even with good numbers.  On a side note my insurance had already paid for the neulasta i was supposed to use this week and it was already prepared in the syringe so couldn't be used by anyone else.  I felt bad for that waste of $2600.

    I couldn't go near vegetables on my days when taste was off.  The best i could do was sips of chocolate milk or ginger ale. For those repeating this ordeal i salute you.

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  • ellenkc
    ellenkc Member Posts: 173
    edited December 2013

    We might note that normal people with normal immune systems catch colds and the flu, and so could we after our shots. With the chemical soup that we are on, and all of our systems under stress, we might have a more difficult time recovering if we do catch something. -- Ellen

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  • jab
    jab Member Posts: 220
    edited December 2013

    all.

    With respect to food, I was told a few things today of interest,

    1) Avoid to many antioxidents as the work against the chemo (I have been drinking blueberry smoothies so will be cutting back on the amount of blueberries...)

    2) Eating fruits and veg - soak it, peel, it, or freeze it. There are lots of things on these that can cause harm. Specifiically e-coli, molds, herbacides, pestacides. (I was an engineer in the food industry before this started and where I can avoid it, I do not eat ANY fruit or Veg not grown in Canada or the US) - Food regulation is not the same else where (minimal FDA/CFIA equivalent interface with growers). PS I am excluding Europe from that statement as they have great food regulation, but we don't see much of it here. I could write a book about this!

    3) Watch the dairy consumption as it is acidic and sours the stomach contributing to nausea. I was told greek yogurt was ok, but lots of milk was not.

    While in the big girl chair today I was also told that our WBC count drops in the second week, but the blood test may not show it, depending on when the blood test happen, so not being around crowds and sick people is still advised even if my blood tests appear OK.

    Amazon - I am on Fec D 6 cycles, then radiation (not sure what yet) and then hormone therapy. I have a port. I don't know my blood type (I'm embarrased about that...)

    Got to go talk to the porcelain goddess

    JAB

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  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited December 2013

    I was told by a pharmacist prior my chemo that antioxidants should be avoided in supplements only. Eating them in food form is apparently OK. 

    Right after my chemo I ate a lot of bland food such as oatmeal, mashed potatoes with carrots and, all bran cereal, and pasta, so I think the body somehow knows what it needs and can handle.

    I still don't dare to eat sushi or sashimi, but I can't resist fresh veggies. I use a sprayer to clean them up. 

    I do avoid crowds, though. That's why I missed my son's Christmas concert this year.:(  I just couldn't even imagine myself being in the same auditiriumm with another 500 people crammed together for over an hour. I hope I can see him next year. 

    I do wear a face mask going to a public place (e.g, a hospital). I constantly keep washing my hands and clean surfaces at home like switch plates, handles, faucets etc. with 99% Isopropyl Alcohol.

    However, I live home with a Big Germ, aka DH. Happy

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  • jab
    jab Member Posts: 220
    edited December 2013

    Here's a good one....

    I mentioned in an earlier post that I had asked for a second opinion in my tumor Pathology. At the time I thought I was being a bit, well, you know, OCD however,  I was asking because my two biopsies looked nothing like the surgical tumor biopsy. Anyway both my BS and Onc DID put pressure on the Pathology Dep to review it. Nothing happened. Three weeks later I bring ot up again. It turns out that my Rad Onc pushed hard with the head of the Onc Dep. as she also thought there were issues with it. So I don't have it back yet, but will be interesting to see the new version....

    JAB

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  • Bec65
    Bec65 Member Posts: 312
    edited December 2013

    jab, good for you in getting a second opinion.  You're not being OCD at all!  My biopsy pathology was IDC multicentric 1 cm with multiple lymph nodes...surgery was ILC 4.8 cm with 6/18 lymph nodes.  You are being your best advocate.

    I was told no fresh produce or ground beef when eating out.  At home, still no ground beef unless it's cooked well done (yuck) or we grind the beef ourselves, and just wash produce well.  

    So we're having gusty winds today in Sacramento.   DD and were shopping outdoors at a garden gift shop.  My wig felt really secure (thank goodness), but also very "airy."  I asked her to walk behind me and tell me what it looked like.  "Uh, it looks like a wig.  I can see your head through the chunks of hair that are separating in the wind."  Note to self:  Wear a hat OVER the wig when it's windy.

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  • Phebe38
    Phebe38 Member Posts: 197
    edited December 2013

    Hi everyone

    Lisa: with your fever (I mean a cold like that I used hot water bottle aroun my feet. That helped me a lot! As for my port I'm going to apply the cream an hour before going for my third chemo treatment 

    I've been going for half hour walks daily. I get real good sleep.

    Quick girl: I love those curls. At one time I had long hair pass my bum. I donate my hair to cancer research at braves you have lovy hair too. I just bought partial wig. When I go out I'm going to wear it then wear a toque or tourban.

    Inks and wren keep posting love reading them

    Audra: you look so pretty with your head scarf

    PatAlameda and Paulette you have your third chemo close to minelisa: I am so careful what I eat. My tongue is so sensitive lately.come and get my pineapple jk lol. I can't use Sensodyne to brush my teeth. I tried using Kid's Crest that works just fine. I gargle water with baking soda. That's it for now need to go to bed 

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  • wallymama
    wallymama Member Posts: 146
    edited December 2013

    Up early again this morning. Nothing to do with the chemo though. I discovered a leak in the waterbed when I changed the sheets over the weekend and we replaced the mattress last night. It was an uncomfortable night without my nice warm waterbed.

    I did start my day with a smile though. I watched some short clips of soldiers who got wrapped up in large boxes and their children were just told that it was a big Christmas present. Their reactions to finding mom or dad in a box was precious.

    Amazon, I missed my granddaughters recitals last week also. There is always a huge, rowdy crowd there. Last year 2 dads got in a fist fight and got arrested over a seat. People are just crazy. And I live with a big germ also. I did tell him that he'd have to wash his hands more and better, and not pet every dog or cat he came across (if it has 4 legs it's his friend) and he has been doing much better. He's so worried though. After losing both of our mothers to cancer, he's freaked about this. I did break down over the weekend and ate veggie sushi. Probably shouldn't have but it looked so good.

    Bec, no one told me not to eat or not eat anything. But the ground beef thing sounds like good advice. And most likely the fresh veggies when out also. Not that I have enough of an appetite to eat a salad, which I love. Without this site it seems like a lot of us would miss some good information.

     Thanks to everyone who posted about slowing the Cytoxan down. I went from feeling like there were little bugs stuffing cotton between my brain and skull with the first round, to just a little funny feeling this time. I really wonder how just 15 minutes can make such a difference in something like that.

    To everyone, have you told you caregiver, child, spouse, sibling, whoever, how much it means to you that they are there? I thought that my husband would just know that, but the other night I told him that there was no one else in the world that I would want to go through this with. He just got an amazed look on his face and he seems to be calmer about it now. A few good words can make things so much better. 

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  • lisa137
    lisa137 Member Posts: 569
    edited December 2013

    Well, I've mostly been asleep since my last post...whenever that was. Husband called up the doctor early the next morning to let 'em know about my fever and mouth & throat agonies, and the on-call doc called me in a prescription for antibiotics. So between the fever itself (which is gone now,) the antibiotics (which generally make me feel sicker than whatever I'm taking them for did,) and the fact that every time I've used the "magic mouthwash" I've *swallowed it* just so that I'd have plenty of benadryl in my system.... sleeping was about all I was good for. I love benadryl.

    Feeling rather better this morning, for the most part. Couple of residual sores in my mouth, and a still slightly sore throat, but I'm nowhere near as miserable as I was ...errr...whatever day it was that I was so miserable. I'm honestly not sure if that was yesterday or the day before, so apparently I've lost a day somewhere along the way. Oh and "the period" still has never become anything worse than spotting, and this morning seems to have stopped entirely....but I don't trust it.

    Now to deal with the constipation that I developed from being too sick to care about such things for a couple of days. Blah.

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  • Bec65
    Bec65 Member Posts: 312
    edited March 2015

    Lisa -- glad you're feeling better. I missed your posts, but I'm glad you take care of yourself while you were on hiatus.

    Wallymama, thank you for the reminder about being grateful for caregivers and husbands. Must take care of that.

    For all on AC, have you noticed anything up with your hands/fingers? I've started feeling tightness whenever I bend my fingers. My skin in the creases is dry and peely, which may be just winter dry skin issues, but it seems different than what I remember of past winters. The nurse practitioner looked at my hands at my appt. after my first AC and commented about slight callousing at one joint, but I didn't think much of it then. I'm expecting neuropathy to some extent with Taxol, but I don't recall being told anything about this with AC.

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  • BigT16
    BigT16 Member Posts: 100
    edited December 2013

    Lisa - glad your feeling better. 

    Bec- I have experience swelling in my fingers as well post A/C.

    Had my last A/C yesterday.  It's kicked my butt.  I felt weak and shaky, so I called in sick to work. My supervisor is    very understanding,  2 of her children have gone through Hodgkin lymphoma.

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  • audra67
    audra67 Member Posts: 521
    edited December 2013

    Bec65- Made me crack up what your daughter said...we have 3 daughters and one at home is 15, sounds like a typical teenager remark!  So funny!!!  I only wear the wig with a hat as it doesn't look so much like a wig...I feel like an imposter in it..! :)

    Lisa- Glad you feel better, I 've had sore throat last few days and today better, no fever but terrific hot flashes and no period...the hot flashes are waking me up through the night to throw off covers and last about 30 seconds and then gone...weird....

    BigT16-  Hope you feel better and rest...glad you have nice boss for sure!

    Phebe38-

    I know I NEED to walk but scared to get too tired again...I am going a little tonight at shopping village outside, maybe I can do just right amount...

    wallymama-  That is so true, my sweet husband is just a doll and working so hard at 'taking care of me' and doing things he normally doesn't need to as I do them...It is so nice and comforting and wonderful..I am going to tell him right now!

    Thanks for reminder!

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  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited December 2013

    It's a wet and miserable day outside. Staying home with my family since school is over. Hubby just had a meltdown, saying that he is exhausted, can't do any more, needs a day off,  can't get it and his wife always NEEDS something!

    I really need to keep my sanity in all of this!

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  • ellenkc
    ellenkc Member Posts: 173
    edited December 2013

    With my hubby at home under hospice care for three months this summer, I learned all about the caregiver role -- and especially the need to get away. Best release for me was to schedule a couple of hours for lunch with friends. Once, I thought for sure two girlfriends and I would get thrown out of a restaurant we were laughing so hard. I would ask friends to talk about anything BUT cancer and my husband's illness. 

    If you feel you can't be left alone, and can't get friends to sit with you while hubby has some time away, home care helpers are a possibility. On the big stuff toward the end, we had them sleep over some nights so that I could sleep in bed rather than the sofa next to the home/hospital bed downstairs (I would still end up sneaking downstairs to check on Tom). 

    Just as importantly, the aides can do the small stuff -- dishes, vacuuming, laundry, change bedding, etc. I was stressing one night that in the middle of all that was going on, I had run out of Cosequin for my older cats' arthritis and the home care owner happened to call. I explained my current distress, and within the half hour, someone was at the door with a bottle of Cosequin. 

    Costs a few pennies if not covered by insurance, but well worth it to give your hubby some guy time and keep him with you for the long run. -- Ellen

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  • Paulette23
    Paulette23 Member Posts: 499
    edited December 2013

    hi...just a quick note...mouth stuff. for whatever reason when I started taking Dickinson for yeast mouth pbms stopped. yay may want to try it"   grr phone....anyone having excessive tears? mine run like crying constantly , lashes falling out and eyes  itch.wwith my red count so low I'm beyond exhausted and ears ring worse than normal.  hanging in there though! chemo on Monday! started to write more last nite but saved it till I can think straighter. also....fingertips cracking open....ouch....regardless pressing on! victory is close!!!

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  • Paulette23
    Paulette23 Member Posts: 499
    edited December 2013

    man.....I would kill for some sushi now!!! I don't eat the raw stuff but concerned about cross contamination......bummer!!! a Philadelphia roll and carp delight.......sounds yummy. maybe ill have hubby get stuff and make my own....bot quite the same as my FAVORITE Japanese place though! I cant live more months without it!

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  • Paulette23
    Paulette23 Member Posts: 499
    edited December 2013

    I'm moving like a snail...2.75 red count....totally anemic...ergh.....even breathing takes thought! if I keep my holiday decoration s at this rate I should be ready by Easter!!! tree up w 1/4 lights....nothing else! and I really have begun to not care!!!!! lol!!! we may do partial Christmas by valentines day!!!! teehee!!!

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  • Paulette23
    Paulette23 Member Posts: 499
    edited December 2013

    I'm moving like a snail...2.75 red count....totally anemic...ergh.....even breathing takes thought! if I keep my holiday decoration s at this rate I should be ready by Easter!!! tree up w 1/4 lights....nothing else! and I really have begun to not care!!!!! lol!!! we may do partial Christmas by valentines day!!!! teehee!!!

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  • Paulette23
    Paulette23 Member Posts: 499
    edited December 2013

    hubby bought flowers and even arranged them since I should touch them right

    image

    now! he isnt the most huggie person... (boohiss) but he does sweet things at times. ive been a grump being sooooo tired and he has been suffering from lack-a-nookie disease. the primary symptom for men with that is SUPER GRUMPIES!!!!

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  • Paulette23
    Paulette23 Member Posts: 499
    edited December 2013

    between brain darts and phone farts....It stinks at trying responses!

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  • Paulette23
    Paulette23 Member Posts: 499
    edited December 2013

    what is with this pgm that doent update promptly?

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  • Paulette23
    Paulette23 Member Posts: 499
    edited December 2013

    or perbaps yall are I  your off week? making me think thats it....when a  few are up when yall down....let me know if im nuts!!!!

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  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited December 2013

    Hi Paulette, nice flowers! And you are OK. 

    What does your doctor recommend you to do to raise your red blood cell count?

    I haven't done much decorating either, the Christmas tree is not even up yet. Just the wreath on the door, a few balls on a tree outside and lights in the window. 

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  • BigT16
    BigT16 Member Posts: 100
    edited December 2013

    I haven't done any decorations yet either.  Don't really feel like and neither does my husband.  Were not staying home for Christmas.  Heading for our parents homes in Massachusetts.  I'm more excited about seeing my only sister & family from Houston.  She's flying in Sunday to surprise my parents.

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  • smrlvr
    smrlvr Member Posts: 422
    edited December 2013

    It seems like it is taking me longer to recover from this infusion.  I haven't been off the couch/bed for 3 days.  No fever, just nausea and that nagging headache.  Have you all found that the fatigue and SEs are accumulating?

    Paulette, your flowers are beautiful and my eyes are tearing too.

    Amazon, my husband is showing signs of cracking too.  He has been great and I tell him that all the time.  However my girls came home from school last week and now there is so much more housework.  More laundry, dishes, etc.  The kids help, but not thoroughly and my husband has been more stressed.  I am sure he doesn't like seeing me this way, either.  

    I know hydration Is key, but I am having a hard time drinking water this time.  It just makes me sick.  Any suggestions for an alternative to water?

    Hope all of you are faring better than me.  Hugs to you all.

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