Anyone Starting Chemo Jan. 2010?

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  • cs718
    cs718 Member Posts: 37
    edited January 2010

    11tybillion;

    Thanks for doing the work. i'm trying to private message you to get onboard with this new year's treatments.  If it doesn't work, my profile under cs718 has it all except my signature diagnosis does not reflect that this is a local recurrence after l2 years out.  Thanks again.  the photo is me in the penguin cold cap, my penguin mascot, and dear daughter finishing a 3year pediatric residency moving into  pediatric oncology for fellowship.

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  • pagowens
    pagowens Member Posts: 194
    edited January 2010

    Hi all,

    ckm3ofthearts - I'm a diarrhea person too rather than the constipation.  I'm keeping the Immodium in my purse and an extra set of underwear and pants closeby.  For my Father In Law's burial on Friday, we had a 2 hour drive up to Northern New Jersey from the Atlantic City area -- we all left early so Pat (me) could stop at every Food Service station on the Garden State Parkway - just in case.  My family is the cat's pajamas! 

    Paxton - your baby is the cutest!  Thanks for posting, made me smile. 

    Mslrg - OK the wig couldn't be THAT bad - but you're story is kinda funny re the dog!  When I got my long hair cut, my husband laughed too.  It was a nervous reaction to the drastic change. My dog and grandson (who is 3 and lives with us) didn't even notice.  We're about a week away from buzzing it all off my head and getting used to the baldie. I have NEVER been bald - even when born. But, what the heck!  I'll finally get to see how shapely my head actually is.  And, I have my Mary Kay Simply Glowing gold shimmering body gel waiting to get used on it.

    I will ask my onc next week about the Clariton for the rash that showed up on my face for the one day. 

    How did you guys paste the photos in anyway?

    Hugs to everyone!  Pat 

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  • jrlegal
    jrlegal Member Posts: 27
    edited January 2010

    To nkrun: 

    Hi. Who's that sitting next to you, daughter or friend or sister?  I went by myself the first time, boring, boring. But I didn't want anyone else to suffer the boredom too.

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  • Flmgkat
    Flmgkat Member Posts: 25
    edited January 2010

    Welp, got my chemo start date Jan 27 and getting a port.  4 cycles for the next 3 months.  My onco told me that my treatment is more streamlined, as I also have Rhuemotoid Arthritis and the low dosed mexthotrexate I was taking might have an effect, then might not.  Am nervous and this weekend I am being taking out to eat, as I told my friends "I may not eat next weekend" LOL.  I am trying to private message to be put on the rollcall, but still new to this website and trying to get around.

    FlamingKat

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  • Flmgkat
    Flmgkat Member Posts: 25
    edited January 2010

    *Had to start all over again...rotten too fast typing! LOL*

    Welp, Jan 27th is my chemo start date; 4 cycles(?) for the next three months and getting a port. Am nervous and to get my mind off it today, am being taking to dinner as I told my best friend "I may not be in the mood to eat next weekend"

    My onco told me that she was streamlining my treatments, as I also have Rhuemotoid Arthritis and the low dose mexthrotrexate that I was taking might or might not have an effect on me.  Am also afraid that I will be 'flared' and not being able to do anything (I HATE THE FEELING!).

     FlamingKate

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  • stlcardsfan
    stlcardsfan Member Posts: 466
    edited January 2010

    Hi all, haven't been on here for a few days and took awhile to get caught up.

    Today is post chemo #1 (TCH) day 10.

    Had my first nosebleed yesterday - that was fun. It all started around day 5 with a slightly sore throat, clear nasal drip and cough. All things nurse told me were normal and I didn't have a temp either. I call it Chemo cough. Cough and sore throat went away in two days, and day 8 felt pretty good. Blew my nose alittle to hard on day 9, and bingo bloody nose. Luckily it stopped very quick. Now I know not to blow so hard!.  Day 10 - actually feel pretty good. Cotton mouth went away by about day 8 as well. I have been keeping a daily log, think someone else mentioned to do that as well a few pages back, to see if the same things happen when I have #2. Have also been pounding the water/liquids and so far no nausea or other issues.

    Also had the Neulasta shot, gave that to myself in the stomach, and had very minimal bone pain for one day. Not even enough for a Tylenol. Also did not take the Claritin that others have suggested - long story but I can't take that kind of medicine. 

    The other thing that I have been doing is monitoring fiber and protein intake to make sure I get the minimum each day. Seems to be helping. 

    Did manage to make it to work everyday this past week - although the fatigue seemed to hit around mid to late afternoon each day. I am bringing lots of protein snacks to work, and eat a little something every 2 hours. That is also helping.

    Hair is getting on the dry side, so expect it to be going sometime next week.

    Youngmomof3 - sorry to hear about your Port problem and reaction. They gave me the Taxotere second, after the Herceptin. Maybe see if they can change the order for round 2?

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  • mom2Bnegativex3
    mom2Bnegativex3 Member Posts: 221
    edited January 2010

    Hi, FlamingKate! Good luck on the 27th. That stinks about your athritis. I hope i doesn't get to bad for you. ITA about enjoying your last supper kinda ling. I went out to eat tonight and I am really paying for it. I thought I would be fine 12 days out but I will think again next time. Ihope you enjoyed it!

    stlcardfan, Is nosebleeds normal with that tx? That stinks. Great that you made it to work every day. I am so into the protein every 2 hours too, It really helps. Even if it is almonds, yogurt or cottage cheese. I love the Boost plus drinks. extra protein in there and light on my stomach right after chemo.

     I hope all you ladies sleep well tonight. I got a better nights rest last night then the previous. My family and I went to the mall today. Looked at wigs and let me be in mommy mode a bit. It is so nice to get out and feel normal. Thanks again for the support. You all are so wonderful!

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  • paddlegirl
    paddlegirl Member Posts: 18
    edited January 2010

    Morning to everyone. 2 days since my first treatment and I feel ok. Loss of appetite, but eating and drinking lots of water, my tea addiction may be cured for a few months! No constipation, actually a bit loose which is great since I was already taking 3 sennokot a day for chronic constipation which I stopped for now. Terrible heartburn in the morning which seems to respond to medicine. Actually went to the gym yesterday, grocery shopped, then took it easy rest of day. Today hope I feel well still to go to the movies with my daughter and the popcorn tastes normalLaughing

    nursemary66- glad your counts are back up and good luck with round 2.

    jrlegal- I was there 6 hours too, also bored. Hope your doing well the last few days.

    I downloaded a daily side effect tracker from the american cancer society that's very nice. http://www.cancer.org/docroot/MON/MON_1.asp

    I know each day will bring something different, I'll take it moment by moment and savor the good ones as long as I can.

    Stay strong!

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  • stlcardsfan
    stlcardsfan Member Posts: 466
    edited January 2010
    mom2Bnegativex3:  Well based on the list of side effects for TCH, one of them does mention nosebleeds. I called my Dr about it, and they did mention it can happen. Need to keep moisture in the air at home, etc and I have started using a saline nasal spray a few times a day. Guess my nose got kinda of dry, and blew to hard, etc..... 
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  • VegasDiva
    VegasDiva Member Posts: 109
    edited January 2010

    mslrg: I got such a laugh out of reading your post about the wig.  I know what you mean.  I feel like that too, but I think in reality it does look different and hopefully better to strangers.   I hate mine yet everyone says it looks natural.

    nkrun: Thanks for sharing.  What a beautiful smile you have.  Is the girl with you your daughter?  She is very pretty.

    cmkdtk  I have that dry mouth numb lip thing too, but believe it or not that doesn't really bother me.  My teeth are actually a little tingly today.  Feels weird.

    Issymom How did it go yesterday?  Looking forward to seeing the before and after pictures..

    pagowens All I did was hit copy then paste on the picture I wanted to post.  Hope it works for you. It is nice being able to put a face to the name.

    I felt like a truck hit me yesterday.  Had my tx on thurs.  I started the day with horrible constipation and ended it with atomic diarrhea.  I was in bed all day yesterday, barely able to lift my head off the pillow.  I didn't have the same body aches as I did after the 1st tx, just incredible fatigue.  I feel better today.  I am up on the couch, took a shower, had breakfast.  Let's see if this will last.

    Hope everyone has a good day.  Stay strong.

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  • mslrg
    mslrg Member Posts: 293
    edited January 2010

    Hey Ladies, I went down with a mild cold yesterday--my lovely kids gave it to me! I hope I will still be able to get my port/cath procedure tomorrow. My oldest, Adam, turned 15 years old today! Where did the years go?

     I'm still trying to work the wig, but I'm just not feeling it. My friend also gave me a wig to use. Iworked with both wigs. I played around with them, styled them, clipped them back on one side or both, teased them, parted them on different sides and the middle, pulled the bangs back, to the side, over my eyes. The wigs keep slipping back off my head, and neither of them feel secure. They make me feel very self-conscious, and my biggest fear is that if I go out in public they'll fall off because that what happened on Friday night at the dinner table. That would be mortifying!

    Like anyone else, I've had my share of "life's most embarrassing moments", but there is one experience that was thee most embarrassing moment ever! I was born and raised in London, England. My mother is English, and my father is from Barbados in the Caribbean. I've lived in California for over 29 years. Here is a story that comes close to being as embarrassing as having my wig come off in a public place: My dad put me and my cousins, Andrew and Stephen on a plane at London's Gatwick Airport to Barbados, by ourselves, back in December of 1975. I was 12, Andrew was almost 11, and Stephen was almost 9. Dad wanted us to take cans of Carnation condensed milk and salt fish to our Granny in Barbados, and for some reason, he felt that these items were contraband of some sort, so we would have to carry them surreptiously through security. In his undying, and infinite wisdom, Dad came up with the brilliant idea of individually-wrapping 18 cans of milk in Christmas paper, and placing 6 of the wrapped cans in each of our carry-on bags. As the oldest, I also got the added burden of having to carry the 18-inch slab of stinking salt fish, which was also wrapped in brightly-colored Christmas paper, covered in smiling snowmen in a winter wonderland scene. This was a time when plane hijackings were a problem, and security in London's airports was tight!

    Naturally, as soon as our carry-on bags went through the x-ray machine at the security check-point, the guards saw metal cylinders and pulled us aside to be searched. The three of us stood there, in front of hundreds of airline passengers, all the guards, G-d, and the world, while they proceded to unwrap each and every single can of milk, as well as the awful salt fish! Before long, a mountain of ripped and crumpled Christmas gift wrap was piled up in front of us, along with 18 cans of Carnation milk, (which seemed to have multiplied tenfold in the process) and the dried out, foul-smelling, disgusting dead fish! (I have never liked salt fish, but many Caribbean people eat it in a variety of recipes. They dry out cod because it keeps for a long time that way. Then when it's ready to be cooked, it's reconstituted with water that's changed frequently over a day or so to get the salt out, and the fish is cooked. I think it's gross!)

    As the scene played out, passengers, and airport employees were busting their guts in fits of laughter, pointing at us, and saying, "look at what they're giving for Christmas presents!!" and about the fish, they asked ,"What's that thing? Do they eat it?? Eewww!!" There just aren't any words to express the depth of humiliation I was feeling at that moment. I only know that if I could have crawled into a hole and stayed there, I would. I'm cringing now as I re-live that experience in this re-telling. My adolescent coolness quotient was decimated in one fell swoop, but losing my wig in public could knock that event out of it's 34 year-old stronghold position as being my most embarrassing experience ever!

    When I thought things couldn't get any worse, my mother and son returned from a trip to the library yesterday afternoon. Mum reported that there's a new librarian who is a male to female transgender person. He has the same  wig that I bought! This does not exactly boost my confidence! Here I am trying to work through all these ambivalent feelings, watching as my femininity gets fed through a meat grinder (again--like losing both breasts wsn't enough), only to find out that my wig is also being worn by a man right here in my home town!

    My hair. Oh dear, my hair! Just as my onco nurse promised, the rate of fall out has increased and quite rapidly too! I just got out of the shower before sitting down to write, and ended up standing in 2-inches of water because of the amount of hair that clogged the drain. The waste paper bin in my bathroom is now about 1/8 full of hair I pulled from the drain after my shower. My hair is all over the place just as I was warned. I should have let the wig lady shave it on Friday. This is mentally draining. But this too shall pass, right?

    I'm trying to make light of this situation, which is why I shared my 1975 airport experience. But it's probably evident that I am struggling at the moment with this hair business. When I stand back and look at the situation, even I am quite surprised at how difficult all of this is for me. I just have to keep reminding myself that in about a year or so I won't need a wig anymore. A year is just a blip on the screen of life, even if it feels like an eternity right now.

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  • leta17
    leta17 Member Posts: 120
    edited January 2010

    A friend of mine is a nurse and she gave it (Neulasta) to me and I felt nothing:)  I had been told to bring it to room temp before injecting it, perhaps that helped out?  She gave it to me on the back of my arm. 

    Today is day 4 and I still feel good, a little lazy but that may be the weather, it is really dreary here today:(   My husband has a nasty cold...staying away from him for now:)   Work tomorrow...

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  • Issymom
    Issymom Member Posts: 264
    edited January 2010

    Well, yesterday was the big day.  I shed a few tears as he started to shave but then was OK.  My mom, sister, and I went out for brunch then I went to Nordstrom to pick up my bra (with pockets built in for my fake boobs), and then to a movie (Lovely Bones).  At 4pm, I went back and got my custom wig.  I need to do a little tweaking of it but much of it looks like me.  Ever since I got home, I have been so emotional.  I have cried more in the past 18 hours than I have since my diagnosis.  With my wig, I know no one would really notice that it is a wig but I KNOW.  And I know that I am bald and don't know what my hair will look like this time next year.  I guess I really didn't like my sagging boobs so I was less emotional about it (I know after recon they will look better than before) but this is really hard.

    **Sorry for the large size of the pics, I can't resize them without distorting the pics**

    Obviously before being shaved

    Shaved

    Lorrie with new wig (made with my own hair)

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  • Merilee
    Merilee Member Posts: 3,047
    edited January 2010

    Great wig! Looks very nice on you.

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  • mslrg
    mslrg Member Posts: 293
    edited January 2010

    issymom: Your wig is beautiful, as are you!

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  • friscosmom
    friscosmom Member Posts: 146
    edited January 2010

    lssymom -  your wig looks great, really!

     stlcardsfan - i also had my first nosebleed yesterday, kind of freaked me out. I had read this might happen, wasn't really sure what caused it but I went and researched some yesterday and it would seem low platelets cause you to bleed and bruise easily, hense the bloody nose. I hadn't recently, blown, picked (LOL) or rubbed my nose before it started bleeding so not sure what caused it. I did have my sunglasses on and was thinking that the pressure on my nose may have got it going. I'm being very careful with my nose today. :)

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  • Emme
    Emme Member Posts: 205
    edited January 2010

    Hi Ladies~

    Sorry for not checkin in since I made my initial post.  My body seems to have gone haywire.  After my third infusion, everything went to hell.  I ended up having emergency gall bladder surgery last Monday, and I do hope things calm down!  I'm tired from having undergone surgery, but otherwise feel so much better, thankfully.

    My hair is falling like snow...i shaved it down to about 3/4" last week, i have a rash (SE of Tykerb)  so I couldn't shave it shorter.  This week the rash is a little bit better not so deep into the hairline so I am trying to recruit my DH to Shave it down closer Smile

    I hope all of your treatmetns are going smoothly with little or no SE....

    I am going to try to catch up on the postings..

    Emme

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  • friscosmom
    friscosmom Member Posts: 146
    edited January 2010

    emme - so sorry to hear things haven't been going well; as if you didn't have enough to deal with right now! I hope you're feeling better from the surgery soon and back on track.

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  • chasinghope
    chasinghope Member Posts: 126
    edited July 2010

    Issymom,

    You have a great face, the wig looks like your own hair (might be because it was made with your own hair) I got a wig, got it from the ACS but it's terrible so I'm just going to do that hat thing, it's winter.  Just remember it grows back. I buzzed all my hair off before waiting for it to fall out, I think it's the way to go. Anywau, I wanted to comment on the photos. You've inspired me to put some up of my own but I'm so damn shy :( Anyway, hang in there!!! To all the ladies, We are moving on to another month. One moment at a time and don't forget to breath.

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  • Issymom
    Issymom Member Posts: 264
    edited January 2010

    By the way, the man who shaved my hair said that when my hair really starts to want to fall out (but may not because it is so short) I should use duct tape to pull it out.  He said it will start to hurt otherwise - kinga like a sliver.  It is amazing the different uses for duct tape (fixing things, removing warts, removing dead hair follicles).  Maybe, I really should be stock in the company.

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  • agbmom
    agbmom Member Posts: 21
    edited January 2010

    issymom: Your wig looks as natural as your pre-shave do. Honestly.  It's sensational.  I cut my waist length hair on Friday. I haven't had short hair in over 40 years, but thought doing this thing gradually would help.  Chemo starts for me on Thursday, so I can enjoy my short hair for a couple of weeks before I'm shaving too.  It's a sucky reality, but it helps seeing others do so well before me. Thanks for sharing!!

    chasinghope: I mentioned on the last page or so that we'd be at DF on the same day this week. How are your mouth sores?

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  • VegasDiva
    VegasDiva Member Posts: 109
    edited January 2010

    Issymom wow you look great, even without your hair.  The wig is unbelievable, I guess it was worth the extra money. Wink

    I'm still debating if I want to buzz my head or not.  I did cut it chin length but most of the hair has fallen off the top of my head so I am looking rather scraggly now.  I was trying to save as much as possible, but I guess it's not worth it.  Just start from scratch.

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  • gramoflexus
    gramoflexus Member Posts: 52
    edited January 2010

    Issymom , I had to laugh at your duct tape . Just this morning as I was talking on the phone to my sister my husband had the tape working on my head like he was taking lite off a sweater hahaha, Love is blind because he says I look great .He buzzed my head yesterday and the picks from it made it hard to sleep last night . So with a little research I found out the tape trick . Also I read using Vit e oil will leave your scalp very soft . For me it was 2 weeks to the date from my 1st Chemo that I started lossing my hair . 1st Chemo was very kind to me but not so for this past one Tuesday . Looking back I think it was more me than the Chemo . they say its important to eat before hand and I did'nt have luunch that day , So here Iam 5 days after having Chemo and feeling good . Lossing my hair is a small price to pay . The Chemo is working and killing any lose cells . Well wishes to all / Linda  

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  • paddlegirl
    paddlegirl Member Posts: 18
    edited January 2010

    Issymom- thank you for sharing the pics! The wig looks fantastic and you look great without it too. I think everyone woman looks great bald but don't believe I will (which is probably the way we all feel!) I'm going to pretend I won't lose mine so I'll wait to shave until it starts. I am going to schedule my appt for the shave though.

    I've had a great day again, great movie and popcorn tasted normal. Hoping I'm one of the few who have few side effects!

    Stay strong!

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  • mom2Bnegativex3
    mom2Bnegativex3 Member Posts: 221
    edited January 2010

    Issymom, it looks WONDERFUL! WOW I hope I look that good. How did you get it made with your own hair? It looks natural!!

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  • youngmomof3
    youngmomof3 Member Posts: 156
    edited January 2010

    Day 4 post chemo Round 1:

    one word...EXHAUSTED!!! wow, it keeps hitting me like a ton of bricks. Get little bursts of energy and then Wham I need to lie down. And this is only with the Herceptin and Carboplatin this week. Not looking forward to the week when I will have all chemo meds on board. Feeling for my poor husband who has been single dad all weekend. Hate hearing the baby cry downstairs and the boys playing and not having enough energy to go down and see them or help out. Somedays I'm not sure who this is harder on, him or me? He is my rock but I worry about him so much trying to keep it all together for me and our kids.

    Issymom: I think you look FABULOUS!!! love the wig. And you are right, probably nobody will know it is a wig but to you(to many of us) it matters. Hang in there:)

    mslrg: that was quite a story. also have a huge fear of the wig coming off in public. guess if that happens after sheer mortification, i will have to laugh about it(and probably cry in private as well). As for the guy from the library with the same wig, I am sure that you wear it much better so no worries.

    stlcardsfan: I go back this week so they can try the Taxotere again. They said they willgive me Benedryl, then Hercepthin, then Benedryl again and then Taxotere. Sounds like a good time huh? sorry to hear about the nose bleeds but you sound slike you are doing well otherwise. and now I know to use saline drops to keep my nose moisturized.

    emme: you have had quite a rough road. hope you feel better soon.

    mom2bnegativex3: I totally understand about being in "mommy mode" and so glad you got to enjoy it. Yesterday I was so happy to go watch my son's soccer game and feel normal for a little while. Who knew that these little moments would mean so much? Guess once the hustle and bustle of life slows down, it makes it that much easier to appreciate what really matters most to us.

    Hope you all have a wonderful Monday. I am hoping to make it back to work tomorrow.

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  • mslrg
    mslrg Member Posts: 293
    edited January 2010

    OK, I added a pic in my Avatar--with thr wig on! This is after a trip to a local wig shop for some advice on getting it to stay on and some "adhesive assistance"! I was brave enough to go out to dinner with it on, and wouldn't you know, it started to slip back, showing my hairline before diner was over! I think I'm making progress, but it's going to be a long time before I feel totally confident wearing the wig.

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  • Issymom
    Issymom Member Posts: 264
    edited January 2010

    Hi all- Thanks for the compliments on my wig.  I feel fortunate to be able to have some control over the wig I "get" to wear.  When I spoke to Anton the "wig maker", I found out that he one of the only "same day real hair wig makers" in the US.  He consistently has people flying in form around the US to have his help.  Last week a woman from Rhode Island came to have her wig made.  I am blessed to have this opportunity.  I have an extremely large head (measured from hairline in front around the hairline a the nape of my neck) and I had limited choices.

    Now the thing I have to get used to used to is the itchiness of hats and wigs.  My tolerance is very low (a couple of hours) and then I have to take it off.  I hope it gets better over time!  I am sure i will.

    I am so thankful for this board and people who truly KNOW what I am going through. 

    mslrg - That is a very cute "wig".  Yes, keeping the wig in place is challenge.  I am sure we will figure it out.

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  • KAJDerby
    KAJDerby Member Posts: 310
    edited January 2010

    I do love all the pictures.  So much fun to see them.  I am on day 6 post first chemo AC and doing way better than I expected.  Will be back to teaching tomorrow for half a day. 

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  • pagowens
    pagowens Member Posts: 194
    edited January 2010

    Issymom and mslrg - the wigs look terrific.  You are both so beautiful, I wouldn't worry about what people are thinking -- they'll be thinking you look great! 

    And, one thing I've learned is that we all tend to think others are preoccupied with looking/thinking about us and actually, everyone is pretty busy thinking about themselves and not paying too much attention to others.  So, the awkwardness is all ours.  The wig thing, too, shall pass. 

    The American Cancer Society TLC site sells a gel strip that goes around your head to secure the wig and to "lift" it from your head so it doesn't get hot.  I bought that and the wig liners.  I haven't used them yet, but I figured these people are experts in medical wig needs.  See http://www.tlcdirect.org/subcategory/SwatchRingandWigNecessities.html?

    Maybe that will help with keeping the wig on.  I've only worn clip-ons and pieces in the past and that secures into your hair.  I figure that the bald thing makes it a whole 'nother game.   My appointment for shaving is this coming Saturday.  I had heard of the duct tape treatment in the past - duct tape is my favorite repair kit tool, I have it in many colors.  I am not surprised that it is an essential cancer tool.

    I'm up early today, day 6 to go back to work full time.  I was pooped (in more ways than one - still swinging between constipation/diarrhea) over the weekend and slept alot, so I'm feeling good.  I'm hoping that I make it through the day, through dinner and put my grandbaby to bed tonight.  He's been putting me to bed lately and snuggling up with kisses and hugs.  Ahhh, what could be better than that!

    And, hey, one extra benefit of this cancer thing is that all of a sudden, I am appreciated by my adult kids.  Most of you aren't at that point in life yet, but with 4 sons there comes a time where you are sorta peripheral to their lives.  It's nice to feel their love and appreciation and not be dead yet.  Wink

    Hugs to all you brave women.

    Pat

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