Chemo May 2013

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  • regbeach
    regbeach Member Posts: 108
    edited May 2013

    My mom is 73 and starting TC next week.  She is triple negative. She was completely independent and active before her stroke last year. Now, I am her live-in caregiver. She can now walk with assistance and is still making progressing with walking and in understanding.  She can't talk for the most part but is starting to say some words. 

    Her lumpectomy was done at SloanKettering in NYC but we are using a local oncologist.  On some reputable websites (like, comprehensive cancer centers), I read that bodily fluids contain chemo agents for 48-72 hrs. after treatment and need to be handled with special gloves, laundry kept separate and washed twice, fluids (urine, blood, feces) kept off skin, etc.

    During the day, my mom sometimes has accidents especially if we have company or she is very tired and doesn't communicate she has to go to bathroom.  At night, I don't change her every few hrs.  I use special overnight diapers that are supposed to keep urine away from the skin. Sometimes, they work but some mornings, either from a leak near the elastic or from too much urine, her PJs and bedpad are wet.  In those cases, her skin is wet.

    When I asked the oncologist via the nurse, he said he doesn't think there will be a problem but if so, he could arrange for a nurse.  I am not sure I believe him.  When I look further on the internet, I found stories of long term chemo use in the home and caregivers getting nauseous and other serious side effects of exposure. 

    For those who had a chemo class- was there any mention of contact with urine, etc?   The same would also apply to vomit. Any mention of special handling or cleaning?

    Thank you.




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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited May 2013

    Regbeach,

    I am sorry you have so much going on with your Mom. I know this is a stressful time for you.

    It is ironic that you mention the gloves etc....I recently saw something about that, but did not learn anything from my oncologist or from these discussion boards in regards to treating bodily fluids as hazardous materials! So I cannot speak to that.



    Knowing that I've read there can be "rawness" if not cleansed properly after urinating I invested in pampers sensitive bay wipes, only because I did not see personal wipes at my local BJ's store.



    Personally, I would do my best to keep mom clean, but you need to live too. IF you brough pt a nurse in would she have to wake your mom every two hours to see if she urinated? What if it happened 5 minutes later? There is no realistic way to address that.

    I would consider adding a good "diaper cream" to the repertoire of items on hand.



    As for the "hazardous material...wipes, clothing etc. I think it is not airborne. Unnecessary handling with bare skin, wash with soap and water. Washing clothes twice? If you wanted to? Ask your oncologist specific concerns regarding the handling of items. You can double bag garbage so you aren't breathing in anything that concerns you.



    I would imagine chemo patients with young kids would get a warning about garbage and body fluids? Maybe some of those people can add to this. I would be interested to hear more.



    Pat



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  • robin_in_SJ
    robin_in_SJ Member Posts: 46
    edited May 2013

    Greetings,

    I’ll be late to the may cocktail party, joining next Friday, May 31st.  I’ve been reading through the posts and I truly appreciate everyone taking time to share.  I get my port placed next Wednesday; it will be on the left side.  I still feel tired some days from the surgery but I am anxious to get the next phase of treatment…poison. I feel stronger everyday and hope by the end of next week I’ll be doing much better.

    I’ll be having a dose dense AC + T cocktail.  Cheers!

    I developed cording and I’ve been going to PT 2x a week and feel like I’m gaining more flexibility and should have the cording taken care of before radiation.  The PT is excellent, she only works with BC patients and shares so much of her knowledge about what to expect.  She told me I’ll be sore from the port placement and not to do any exercises until I see her. 

    Pattysmiles…my daughter who has beautiful think, long, wavy hair said she would cut hers if I wanted when I get my buzz.  I let her know that I love looking at her hair and she is not to cut it.  She’ll be going wig shopping with me and unlike me she as a sense of style.  I have blue jeans.  My husband didn’t want to tell anyone…I told him he needed to tell his boss since he’ll need time off. 

    Gowiththeflow…I agree people aren’t sure what to say or do and are trying to be helpful.  I am not real emotional but I broke out in tears yesterday when the women I work with sent me a goodie basket filled with chocolate.  Most people have been so wonderful a few I am just not sure what planet they’re from.

    Elkatho…Before I went on leave I asked two ladies who I’m close with to share my updates with others.  They’ve been great at filtering and forwarding information on to others.  Before I left I told people who to get in touch with if they wanted an update.  When I get back I’ll ask them to run some interference for me.  They’ve been wonderful and it’s worked out well.

    Ukkate…so glad to hear you’re feeling better.

    Thanks again for sharing,

    Robin

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  • ReddHeddMomma
    ReddHeddMomma Member Posts: 38
    edited May 2013

    Regbeach - I have a ten year old, and had my first chemo infusion just yesterday. I specifically asked about contact issues for my daughter. This is what I was told:



    No problem with radioactivity in terms of hugs, kisses, etc., even right after treatment.



    I didn't have to segregate bathroom usage. But I do need to flush twice every time I got to make sure things are cleaned out completely. I have also been wiping down the toilet seat and rim with a Clorox wipe after every third time I have gone, just to be sure the seat and rim are clear, too.



    I also got flushable moist wipes because my skin is sensitive already, to clear everything off me that I possibly can. And I have been using a little diaper cream with zinc to keep everything down there from getting too irritated. So far, so good.



    I was not told to segregate laundry or dishes/silverware, and I asked about that because someone else had mentioned it to me. So, fwiw, that may apply to some radioactive treatments, but not to mine.



    In terms of trash, I wasn't told to segregate anything. But I'm not dealing with depends, either, which is a whole lot more fluid than I would get in a tissue. Is there a cancer center coordinator where your mom is being treated? I'd speak with them - there have to have been other times in the past where a caregiver for someone who is elderly has had this question come up. I bet the hospital also has a social worker coordinator who might be a good resource as well for elder care questions. Hope that helps!



    Oh, I'm on cytoxan and taxotere, so that applies at least to what I am getting for my chemo. No idea if it applies to anything else.

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  • lpc
    lpc Member Posts: 303
    edited May 2013

    Hooray lab work 7 days after 2nd treatment better than after 1st treatment. I so worry my body wont recover in time for next treatment! I want it over asap with no delays. My mouth is really crappy this week. Sore and bad taste in my mouth. Have used biotene salt water but mouth is just yucky! Tongue is raw too!



    Welcome Robin. I am on the same dose dense schedule as you. I have finished two so far. Besides mouth have not had horrible se's. But days 3 and 4 all I want is sleep and more sleep. My hair started falling out on day 12 underarm hair gone but the leg hair just wont go. Figures lol.



    I was told to flush toilet twice for 2 days after treatment and also no kissing but hugs okay. I don't segregate laundry or dishes. I too use personal wipes. I did find out that when I get fluids on day 2 it is because the chemo is irritating to the bladder and mo likes to try and flush it out of there quickly.



    Hope everyone has a pleasant evening



    Lisa





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  • OceanWarrior
    OceanWarrior Member Posts: 96
    edited May 2013

    Pattysmiles – thanks for sharing the link for the chemo worksheet.  That will be a great way to monitor and use for discussion with my medical team and just to monitor for myself.  

     Continuing to learn so much.  It is greatly appreciated.

     New start date for chemo is Tuesday June 4th.  

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  • Teresa_G
    Teresa_G Member Posts: 259
    edited May 2013

    In chemo class they did discuss about the urine, if you are on the "Red Devil" (I can't remember which drug it is) then it will turn your urine orange and you NEED to flush twice and best if you are the only one using that bathroom.  I think the drug is Taxol.....it didn't apply to me so I didn't pay a lot of attention at that point.  They also said for that one to wash separate too.  Sorry.

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  • lpc
    lpc Member Posts: 303
    edited May 2013

    Red devil is the adriamycin. I flush twice 1st two days making sure lid is down but am not only one who uses the bathroom.

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  • MariaNL
    MariaNL Member Posts: 118
    edited May 2013

    Treatment 2 done 10more to go. My hair started falling out yesterday so I had my DH and DS buzz it.

    I'm feeling pretty good, I will be taking my Claritin before My Nulasta shot tomorrow. I took it last time didn't have much bone pain at all. 

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  • ReddHeddMomma
    ReddHeddMomma Member Posts: 38
    edited May 2013

    Just had first chemo yesterday, so I am on the evening of day 2. Just started having a little nausea, and my taste has been off most of the day. I know a lot of you have been through this already, so I would love advice on how you got through it. Any foods that worked well and eased this back? What has made it worse? Am still trying to push water, but I discovered that a San pelligrino limonata (a sour lemon spritzer, basically) was the only thing that has tasted good to me all day.



    Took my nausea meds for the first time this evening, and am figuring it won't be the last time. But any advice from folks who have had to deal with this already would be much appreciated. Thanks in advance!

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  • jsrose14
    jsrose14 Member Posts: 117
    edited May 2013

    reddheddmom-

    i found the only thing i could eat on day 3-4 when i felt the most nauseous was watermelon and miso soup or any broth like chicken soup! good luck! hope the se pass quickly!



    jsrose

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  • Gully
    Gully Member Posts: 268
    edited May 2013

    Round 2 complete for me ladies........thanks for the well wishes! A little tired but so far so good. Good night ladies!

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  • algranna
    algranna Member Posts: 61
    edited May 2013

    ReddHeddMomma...I had my second treatment today. I could eat very little the first three day's after my treatment.  I found that fruit tasted good and cheese and saltine crackers. That was about all I could eat.  The only thing I could drink was water.  I was told to stay away from soda's.  My first treatment went well and took 5 hours.  Today my port was not cooperating.  It would only take the fluid if I held my head crooked.  They sent me down for x-ray's in the middle of my treatment to be sure it had not moved or if it was twisted. The x-ray looked great.  So I went back up and held my head crooked to get the rest of my treatment which took 8 hours.  I was very nauseated after my first treatment for 3 day's. They told me today to start taking the nausea medicine and continue every 8 hours for three day's and maybe that would help.  Good luck to you ReddHedd Momma.

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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited May 2013

    Reddheddmom,

    I agree with watermelon - it was so cold and delicious and juicy, and the soup was great! (How funny!)



    I also had McDonald's chocolate shakes and carvel avalanche thin mint sundaes...I have the weight gain to show for it! Also found the Mcdouble cheeseburger to be tasty (but not just a regular cheeseburger, go figure!). I wanted no part of my salads for lunch. I ate what I felt like.

    Stay away from metal utensils and use plastic instead to avoid the metallic taste.



    I branched out from plain water and tried some flavored waters by day 3.



    As for nausea meds,i stayed up as late as I could to take one before bedtime (I'm generally up late anyway) and then made sure to add one to my morning regiment of stool softener, Miralax, Claritan and Prilosec. I think I took those nausea meds for 3 1/2 days.



    You are doing great. You will find what works for you

    Pat

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  • AmyJax
    AmyJax Member Posts: 43
    edited May 2013

    Redhead mom - chicken noodle soup, bullion with saltines, water mixed with orange juice, oranges, I also think rice with chicken broth would have been good. I tried to eat dinners with the family, but I had a few bouts with bad diarrhea and then kept it simple for awhile. I did have nausea that I used the meds for throughout day 8. I went through my zofran and layered compozine on at night.



    It will pass!



    Hope we all have a restful night.

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  • Gigi62
    Gigi62 Member Posts: 8
    edited May 2013

    Patty,

    That would upset me too. Shaving your head is not the same as losing your hair. When I actually had my hair removed, that was a relief because it was falling everywhere and constantly thinning out. The last day before my hair dresser did a "scissors over comb" close cut, it was so snarled & straggly, that I just bunched it up wet under my turban (or whatever it is). You can imagine the mess when I finally removed the turban after supper. My husband & I went out to the back yard and I just had him cut the rats' nest part off. In the house I usually go bare-headed, but haven't ventured ou that way yet.



    Sounds like your husband is looking for sympathy at your expense. I didn't mind that anyone knew I was DX with BC because I hope it may get someone to their mammogram since I couldn't feel anything. But as far as sharing the intimate details so any SE, I think that is your call & by the sounds of things, you are a fairly private person. I truly hope he will listen to you & understand that he can't fix this. Good luck because I think having a safe & supportive haven at home makes such a difference.

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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited May 2013

    Gigi,

    Thank you for your kind words.

    I AM a private person but I am also the first to be outspoken if necessary. Sort of a conflict I guess?



    I am always willing to help out others. If I have knowledge that can help others I will share it.

    I believe strongly that education is key. We learn from our mistakes and we learn from others. We owe it to others to help them along their journey.



    With all that said, I don't need the general population knowing if I am constipated! Lol

    I will gladly share that info here, where it might help someone else having a similar experience. But I don't think the people in my social circle, school circle, Girl Scouts, etc need to know that info!



    It isn't easy to wrap our head around what happens to us. I'm sure it isn't easy for my husband or kids either. I do try to be understanding, but no, I am not in their shoes and cannot always see thing through their eyes, just as they cannot see things how i seem them.



    Anyhow, tonight my hair is REALLY coming out. My 10 year old is still adamant that she not witness the head shaving, amd will not help do it BUT, she was happy to pull my hair and watch it come out., in fact we made a big pile of hair! Then I let my two boys do it. My husband was very upset. He felt it was inappropriate. I told him the kids need to do what makes them understand and accept. If pulling on my hair and watching it come out doesn't freak them out, but amazes them LET THEM! They will understand WHY I had to shave my head when I do it! He had a very hard time with that. Again, he could leave the room and not witness what disturbs him, but instead it is all about him. Yes, I am being selfish in defending the kids and maybe i am not so supportive at this particular moment! But really should I have made the kids stop? He said I was wrong to let them pull my hair out.

    I'm all about trying to keep people happy, but I'm running out of "how to". There are 5 people that live in this house. Apparently I am unable to keep everyone happy! Ugh!

    Pat



    Pat

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  • Gigi62
    Gigi62 Member Posts: 8
    edited May 2013

    Ocean Warrior, I was sorry to hear your treatment was delayed and that you have such a trek to get the next test. We psych ourselves up and plan for the beginning and end, but it doesn't always go that way. Hooray for you for being your own advocate and asking about the heart test. It isn't my nature to ask about things, but I am learning. My MO told me there was a greater chance of heart problem with the AC/T than the CT. Since my radiation is on my left side & there is a history of heart problems in my family, I opted for the CT even though at this time my heart is very healthy. Also, I wasn't getting a significant boost in my onco # compared with CT. Lots of things to consider and everyone is different. I hope all goes well in the coming days.

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  • Gigi62
    Gigi62 Member Posts: 8
    edited May 2013

    I guess it goes to that saying, "You can please some of the people some of the time, but you can't please all of the people all of the time." A sharing moment with your children is precious, no matter how unconventional. There are enough isolating moments so take joy(?) where you can. Sounds like a support group might be helpful for your husband so he can see your choices are not inappropriate. Didn't notice if there was a discussion board for caregivers? Thinking of you.

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  • ItIsWhatItIs2013
    ItIsWhatItIs2013 Member Posts: 541
    edited May 2013

    I hope everyone is feeling.... Well as good as they can today.....

    I was talking to someone today who was asking what I was going thru and realized later, that I sugar coated it for them. We can only really talk here anonymously without sounding like we are whining to our family and friends.... At least that's me! I only spin the positive stuff to them... I soooooooo appreciate this forum where I can say how I really feel!

    I told my husband tonight that " OMG.... I need to check in on the ladies" YOU LADIES!

    He said he was glad I had others who understood what he doesn't...... Love my sweetie! (well, most the time! Haha)



    Welcome to the new-comers! I'm sorry you had to join! And hope everyone else is doing well!



    Pat... You should tell your husband that you are growing a tail...... Haha I'm so totally kidding, but maybe it would make a point?!?



    Anyway.... Happy thoughts all!

    Lorrie

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  • ItIsWhatItIs2013
    ItIsWhatItIs2013 Member Posts: 541
    edited May 2013

    Oh.... One more thing...

    This is gonna sound really kooky, but...

    Since my diagnosis, I've been watching AGT, BGT, factor...etc on my iPad and the auditions make me laugh!

    I love seeing people reach their dreams (at least for the moment) and how excited they get....

    My point is... Find something that makes you laugh or be happy to look forward to! It's a nice distraction for me....

    It takes my mind off of surfing the web.... or going thru the bills (no insurance here) which is really an additional stress, for sure!

    It's a distraction! Find a distraction that fits u!



    As much as our disease has to consume us... We need to take a few minutes for US!



    Happy thoughts!

    Lorrie

    We have enough going on right now!

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  • okiecountrygal
    okiecountrygal Member Posts: 25
    edited May 2013

    Well i got to spend the night in the hospital. For several days I have had this very deep hurt in my belly that I thought was from the diarrhea but it just doesnt go away even tho the diarrhea has pretty much quit. When I started having fever and chills again yesterday my cancer center wanted me to come have some tests run. They are checking my gallbladder this morning. I keep waiting for the day that I get up and feel better and tell myself I can do this. So far all I can think is I dont see how I can do this again. I want to feel better. I havent been able to work or do much of anything in over a week.

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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited May 2013

    Shelly,

    I am so sorry to hear that. I am praying that they figure out what is wrong,fix it quickly and you get to feel e better before your next round.



    Lorrie- yes, a tail! Hmmmm....lol. In regards to the no insurance, there are forums on here for uninsured and underinsured, please make sure to check them out. Additionally your local hospital/doctors etc should more than likely have a different fee schedule for you. Don't pay full price when you can get a discount!



    Pat

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  • Ukkate
    Ukkate Member Posts: 292
    edited May 2013

    Shelly, so sorry to hear what's going on. I was at the wig store yesterday and got chatting to a woman going thru the same chemo as us (CTH) and she was hit hard with her first round too and that got me wondering if its the hercepten that is the thing that makes the difference??? I know I'm dreading my next treatment too

    Today I'm feeling sorry for myself. Stuff hurts on my body - wierd things like my shoulders and my upper abdomen. Plus now I'm constipated and I look like crap all the time. I have a consistent low level nausea ( like first trimester pg) and I miss my strong body that ran 6 miles easily :(:(

    Sigh......

    Thank goodness it's a long weekend

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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited May 2013

    Did it.



    Hubby awoke and made plans for the day.

    I guess him saying he would help shave my head was forgotten? Or is it the denial!

    (If you knew him it could honestly be either!)



    Anyhow, was going to go to the barber shop. But since I have a perfectly good set of clippers and barber scissors I decided to give it a go.



    Clipped the top to "spikes"- now mind you my hair is stick straight, so if I were to go with no hat or head covering I am sure I will need to use gel.

    Then i set up the hair clippers and used a number 6, figuring I could always go down to a lower number (lower being shorter). Anyhow, it was interesting to do the back of my head while holding a hand mirror! Lol.



    Well it's done, was going to go to a barber to "clean it up" , but there is no one going to see this head outside of my house. My pale blond hair actually accentuates my bald head and brings out the scalp....or is it that my hair has thinned so much?



    I like that there are some pieces long enough to stick out from my head wrap near the ears and the back of my head, so I'm not exactly looking totally bald -yet. Not that I am fooling anyone, but it is just one more step in the transition.



    Just spent a half hour re-trying my wigs, as now it is sink or swim! Lol

    Pulled out my scissors and made some very small snips to get some hair out of my eyes...I didn't like my real hair in my eyes, I'm certainly not going to like this wig stuff in my eyes!

    Glad I invested in a wig comb and wig brush, I needed both to get those things to look decent. Oh, and funny,the wigs were shedding a little....are they feeling the effects of chemo?



    I will say what I am totally enjoying is the comfort of the Buff. http://www.buffusa.com/sports/collections/original-buff-reg/styles?gclid=CJDp0_KSr7cCFYme4Aod1FAAlg

    Very easy to put on. I even used a pony tail holder to gather the extra material in the back."sorta mock ponytail"

    I should not have bought a pale color one, it does nothing for me, but the two brighter ones look great and they have UV protection on those. Then there is the one I purchased for the gym (i think it is sweat absorbant?) which is sitting on my head as inthoe this...I am going to the gym now.



    Pat

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  • Lily28
    Lily28 Member Posts: 10
    edited May 2013

    Good for you Patti! I've scheduled my first haircut for next week and she'll be on call to do the buzz when it's falling out. I bought an expensive blondish Raquel Welch wig that is way nicer than my own hair and got a free one from the cancer support shop that is brunette with bangs and a few blonde highlights.

    Funny that when I told my 10 yr old I had breast cancer(and it took me a while) she seemed ok then she asked me if I was going to lose my hair and that's when she started to cry.

    I'm ok with it I think

    Lily

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  • lpc
    lpc Member Posts: 303
    edited May 2013

    I am currently sporting the mangy dog look! I had shaved town to 1/4 inch and now that is coming out! DH will have to shave it for me. Leg hair still holding tight. WTF not fair.



    It was rainy here today and I must say it was nice not to worry about frizzy hair from rain. Bright side of wig.

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  • ItIsWhatItIs2013
    ItIsWhatItIs2013 Member Posts: 541
    edited May 2013

    At work today, one of the ladies and I were left alone & had a goofy idea....



    Now, I buzzed my head to a zero on Tuesday .... & now my whiskers are beginning to noticeBly shed....My coworker was like..... Maybe a lint roller to help with the whiskers falling out?"

    After laughing, I said, "wait! Wheres the duct tape?" and we experimented to see if the duct tape would clean up any loose whiskers... It was so funny! Not that I recommend doing this! It was just a fun diversion..... & it worked!



    I hope everyone can embrace & enjoy the good days! We need to be able to laugh at ourselves sometimes to keep the yucky emotions at bay!



    Patti, yay on doing your own hair! I was too scared so I had my gal do it (who was also on call for me & came in on her off day)



    Happy thoughts!

    Lorrie



    Happy thoughts!

    Lorrie

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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited May 2013

    Lily,

    That was my daughter too. 10 years old, accepted the cancer diagnosis with a few sniffles (as I don't think she fully understood). Then one day asked if I was going to lose my hair and she started crying when I said yes.

    They are hard to figure out!



    When she saw me today she wasn't thrilled. I had to take off my buff so she could see my "cut". She was a little upset but I had warned her since last week it was coming..."this might just be my last .friday with hair" etc. she made me promise I would wear a wig near friends, but not my pink/white one.



    Then I asked if she would go to Kohls with me, and we went shopping for 2 hours, with me wearing my buff! I told her the wig would be too much work for trying on shirts. She was fine.



    Lorrie, which worked better,lint roller or duct tape? I had read about both but never heard which is better. Figure you are now the expert!



    Pat

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  • ReddHeddMomma
    ReddHeddMomma Member Posts: 38
    edited May 2013

    Thanks so much everyone for the nausea advice. It seems to hit me in the evenings, but not all day long for some reason. Whatever it is, I am grateful that it is controllable with meds so far. Appreciate all the advice - broth and crackers have worked well so far. Am sending my hubby out for watermelon tomorrow, as my taste buds are a wreck. Have been brushing with baking soda and peroxide toothpaste and rinsing with biotene mouthwash, but am still getting sore spots in my mouth. Did discover today that edy's fruit Popsicles make a huge difference in terms of pain, and will have to get some more in citrus flavors next time around.



    We had to have our 16 year old cat put to sleep this morning, and I have been weepy off and on all day. Between the chemo and everything else this week, I am just wrung out. Am so glad I have a place to get real time advice when something weird like a sore mouth crops up - I really appreciate all the help the last few days. Thank you everyone.

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