Starting Chemo in July 2009

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PauldingMom
PauldingMom Member Posts: 927
edited July 2020 in Chemotherapy - Before, During, and After
Welcome to the July Jedi Jug-A-Naut Forum
Also known as The Triple J's 

 If you are new here you are going to find a great group of women dealing with different types of Chemo in the month of July. We also have a couple of sweeties who started or have completed Chemo earlier and have great knowledge of the journey we all face ahead.Here you will find that we are all different and yet all the same. We have the best hand holders, belly gigglers, tissue passers, and even a couple of us who like to play doctor. 

Here is my story, we all have one and everyone is welcome to share:

Found out yesterday that I will be starting Taxotere and  of Cytaxan on July 6th.  I will also get Neulasta, to help with white blood cell count. 

Docs wanted to wait 4 weeks post lumpectomy to begin. I had high hopes that I would not need chemo. but oh well, gotta get this thing taken care of. Now I've been told I will not be able to return to my regular job until October. I am hoping that somewhere out there we can find the financial help we need to get through this. I should also mention that my mother was DX 10 days before I was with the same cancer. No family history, just a flux. 

I ordered my scarf and Laura was so sweet. She said to spread the news so here goes:

www.franceluxe.com  

I am very excited about this. Also getting in touch with Look Good, Feel Better.

Thanks to you ladies in June Chemo. post for the insights.

Here is a list of different sites that have been suggested to visit. Thank you Kathy15 for gathering all the info.Sorry I couldn't add these as links. 

www.franceluxe.com   Free scarves or It's a Wrap 

www.HeavenlyHats.com  Free hats for those with limited resources

www.cjhats.com Breast Cancer Survivor who makes wraps

www.energizerkeepgoinghalloffame.com  Vote for Anthony Leanna, young man who started Heavenly Hats

www.lookgoodfeelbetter.org   Free Make-up  1-800-227-2345  ACS

TLCdirect.org  1-800-850-9445   Catalog for hats, scarves, wigs, clothes ACS

http://blog.cincovidas.com/managing-the-costs-of-treatment    Britta's blog on managing costs.

http://blog.cincovidas.com/I'm-going-through-chemo-and-I-need-a-wig-will-my-insurance-cover-it           Britta's blog managing insurance

htt://blog.cincovidas.com/what-is-the-drug-neulasta-what-does-it-do-will-it-make-my-hair-fall-out

http://www.brioschi-usa.com  Stomach Upset product recommended

http://disabilityrightslegalcenter.org/about/cancerlegalresource.cfm    Family Medical Leave Act help

www.chemoangles.com    Chemo Support Group

http://www.youtube.com/watch?v=QC-zvthjffc   Renee's video head shaving party

http://aymzbc.blogspot.com Amy's blog 

Remember the women on the Titanic who passed up the dessert cart. Erma Bombeck

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  • PauldingMom
    PauldingMom Member Posts: 927
    edited June 2009

    Okay July ladies, I know you must be out there. So please jump in!

    I am researching the when and where of hair loss. I know it's vain but it's the one thing that stands out to each and every person you meet. It's either get a big tattoo on my head that says something crude or some cute hats. This is just my attitude and my attitude helps me a lot!

    So I am hearing that the private hair goes first. No bikini wax this summer. Whoo Hooo! but what about the rest? My doc said during my first treatment and only a couple days after, but I am reading here day 14 or so. Anyone know of a timeline or something?

    Come on ladies, jump in. It's time for me to have a group of chicks to swap stories and treatments with.

    Hugs from a far.

    PauldingMom 

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  • Jayne_in_UK
    Jayne_in_UK Member Posts: 517
    edited June 2009

    Hi PauldingMom

    I started posting on the June Chemo thread because I was hoping to start my chemo in June. As it turns out I will have my chemo pre admission clinic on 29th June and my first treatment on 1st July. I will be having 3 x FEC then 3 X Taxotere in 3 week cycles.

    I have had my hair cut shorter, it is pretty short in the photo I have as my avatar, but I had grown it quite a bit since then. I haven't been given a timeline for when my hair will fall out, maybe they will say or I can ask at the pre admission clinic. I think maybe it depends a bit on what drugs you will be having. I have a few scarves and I want to get some hats too. I may get a wig if I can find one I like.

    At the moment I am making the most of the nice weather we are having by going swimming in an outdoor pool near where we live. I have been told no swimming once chemo starts because of risk of infection. So I was wondering what I will do then about getting rid of hair on my legs, I shave them usually, but if I cut myself, risk of infection again. Then it dawned on me, the hair on my legs will fall out too. It's just too all or nothing this hair business :)

    (((((Hugs)))))

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  • PauldingMom
    PauldingMom Member Posts: 927
    edited June 2009

    Wow, I haven't been told no swimming, but it makes perfect sense. Bummer. I work with young children and volunteer at the nursing home and was told no more till after October. I also heard, but wasn't told by doc., to use an electric razor instead of a blade to prevent cutting till the hair falls out. Also no pedi. manicures. I'm lucky to have a daughter who loves to paint nails. Thanks for posting  Jayne. You hang in there

    I am to have 4 doses of Takotare and cytoxam. Then something call Nevasta. Gotta go figure out what that's all about.

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  • lemonjello
    lemonjello Member Posts: 75
    edited June 2009

    Are you sure it's not taxotere and cytoxin and Neulasta? 

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  • Scoobydoo
    Scoobydoo Member Posts: 499
    edited June 2009

    I will be starting chemo in July as well.  I will definitely cut my hair prior to starting chemo.  A really short cut to only an inch.  My hair is naturally curly so it will look like a little afro.  When it starts to fall out I will probably wear a wig.  If you ladies decide on wigs make sure you take them to a hairdresser so that can cut it to fit your face.  If not you will look weird in it.

    Anita

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  • stef58
    stef58 Member Posts: 288
    edited June 2009

    I think I might qualify for this thread by a few dasy. i start a/c on the 29th. I was wonderng about the 4th. We always have a big do in town and how to cope with the crowds and the sun. Any suggestions.

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  • PauldingMom
    PauldingMom Member Posts: 927
    edited June 2009
    Lemonjello, 
    Ya know I'm gonna have to double check but that sounds right. My docs. hand writing is pretty bad
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  • nowaynotnow
    nowaynotnow Member Posts: 26
    edited June 2009

    Yes, I too start tx on July 1st, Happy Fourth of July! Oh well, we are headed out of town for my daughter's softball tournament and hope I make it to championship Sunday. I having TAC for 6 cycles followed by radiation for six weeks. We will make it through!!!!!!!

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  • PauldingMom
    PauldingMom Member Posts: 927
    edited June 2009

    Did any of you ladies get a tour of the chemo. room or told what to bring or what not to bring? My doc has said nothing much and except from the advise here I have no idea?

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  • stef58
    stef58 Member Posts: 288
    edited June 2009

    I did my shopping for the hair yesterday. Found a really cute wig and some scarves. It does seem to make it all real.Does not scare me as much now.  Start Chemo Monday so I thought the July thread is more current for me. on taking stuff they gave me a booklet about chemo and what they offer there and what to bring. No tour, I figure that I will get to know them good enough after 8 rounds of ACT. Last till turkey day. They told me that the 4 th should be ok and the following week are the days to watch. I believe that almost all side effects are livableand we can all make it thru. Hugs Dianne

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  • jacee
    jacee Member Posts: 1,384
    edited June 2009

    Hi Ladies...will probably be joining you  toward the end of July. Had rt mast w/AND on June 9. I'm currently in the process of doing tests...colonoscopy, PET/CT, having a port a cath  put in on Jul 6. Will see my ONC on Jul 15th so should start chemo shortly after that.

    I will be on 4 rounds of A/C (one every 21 days), then 12 rounds of Taxol (one per week)...so chemo for 6 months, then about 36 treatments of rads.

    Dianne~I also got my wig, last week. AMAZING how much more prepared I "feel" to  face chemo now. Also got a nice mast bra and "fake boobie".  So, I think I'm ready.

    Praying for PET/CT to come back clear now.

    Best wishes to you all,

    Joni

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  • Kathy16
    Kathy16 Member Posts: 135
    edited June 2009

    Can anyone join this thread who is having chemo in July?  I am supposed to begin 7-2, but might be delayed a week due to a nagging low-grade fever that seems to have no cause (incisions healing perfectly, no infection there, no apparent other colds, UTIs or other infections.  I'm waiting for surgeon to talk to my oncologist.  I am supposed to have taxotere/cytoxin (?) for 4 cycles.  The best information I got was on this site - there are two long threads on how to prepare for chemo and what to pack.  Also, if this helps anyone, I just had a wonderful sweet woman who owns a spa offer to go with me to pick out a wig and she walked me through what would happen with the hair loss. She said in general most people begin to have the effect after the second treatment, so I should be looking for the hair to come out after the second one and (my hair is already short) if I see any on my pillow to come see her asap to style my wig for wearing.  I would really like to be on a discussion board where folks are going through chemo this summer - I think I'm more frightened of this than surgery and I was very frightened about the surgery. 

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  • TCGGal
    TCGGal Member Posts: 137
    edited June 2009

    ok, I am only posting because u have questions...I am a June chemo. I started taxotere/cytoxan x 4 every 21 days. My next treatment in July 6th. I am on day 11 and have yet to lose any hair. I am feeling really really really good. I had neulasta shot on the day after my chemo. Day one-I certainly felt weird after...and tired, but the actual treatment isn't hard-so try not to be nervous. Day 2 & 3, I was tired, still worked a few hours, but was overwhelmed with all the drugs I had to take for nausea, steroids, etc-but didn't ever feel "bad" those 2 days. Days 4, 5 & 6, bone pain was pretty harsh...I took the claritin & aleve only on the actual day of my neulasta-I will take the next 2 days this next time- I learned that my pain could not be controlled by tylenol or the tylenol w/codeine I was prescribed-so I broke down & took an aleve Sat 3am-it worked to relieve my pain. Since then, I have been like the energizer bunny-no nausea meds, only the cipro from day 5-14 because I work with a lot of kids. I was warned not to overdo the aleve due to stomach problems & blood thinning-oh, I did have BAD heartburn days 2 & 3, relieved with Maalox.

    sorry to butt in on your thread-I just hope I have helped a little as I am still new here too and still have tons of questions myself. I also hope I continue to feel this good and you all feel as great as I do.

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  • Jayne_in_UK
    Jayne_in_UK Member Posts: 517
    edited June 2009

    Hi everyone.

    Welcome Kathy, yes of course anyone can join this thread. Sorry you have to be here but glad you have found this site.

    Laurie it's good to hear you are feeling so good on your chemo. Energizer bunny lol! I hope I feel like that.

    PauldingMom I haven't had a tour yet but they gave me a general leaflet about chemo plus more detailed info about the drugs I will be given. I have an appointment for a pre admission clinic on 29 June when they will discuss things in more detail and maybe I will get a tour then. At some point I will be able to able to select 3 wigs to try and I can keep one of them. My hairdresser has offered to cut it to suit me. I have some scarves and I have ordered some hats. So I reckon I am as sorted as I can be as far as that goes.

    Yesterday I had a fill in my TE, that went well. I can now wear the soft sports bra type thingys I bought and look OK. A nurse at the breast care unit is going to order a half prosthesis for me so I will be able to wear a regular bra again. At the moment I can't because my TE side is smaller and higher up on my chest, the half prosthesis will fill in the bottom bit and even me out. I have tried a rolled up sock but it was too bumpy!

    (((((Hugs to all)))))

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  • josybee
    josybee Member Posts: 86
    edited June 2009

    I am starting chemo July 1st also. ACT, every 2 weeks, 8 cycles. The first 4 cycles I have to go 2 days in a row, also herceptin every 3 weeks for one year. I am also going to have radiation but I have not been told how much yet. Told me I would lose my hair after the 2nd treatment so I am ordering my wig next week and going to check out scarfs also. Anyone with the same? Any infoto share??

    Thanks!!!  

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  • stef58
    stef58 Member Posts: 288
    edited June 2009

    Just wondering if any of you have minor meltdowns. I seem to be getting through this thing great and then usually at night it hits. The crying, This morning I feel like I have a hangover and I am not taking anything. No pain meds etc. Nothing.  Need to get off my butt and go do something. Any suggestions on how to cope with emotional roller coaster?  Hugs to all Dianne

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  • holtbolt
    holtbolt Member Posts: 625
    edited June 2009

    Calling all breast cancer sisters... I got thru chemo and you can too!... can you do me a favor?  I know this is off the topic and I hope it's okay to post this but...I am trying to win a contest for my son (to meet his idol - Joe Perry, Aerosmith)... all you have to do is click on this link and click on the thumbs up icon to vote for our entry (legit site, legit contest, MOST deserving young man!)... can you please help me?  Just trying to bring a little joy into my son's life after all this depressing /chemo stuff... voting is only June 23-26... please vote?  It'll only take a second... help me bring joy to this boy! :)  Thank you so much!  P.S.  It says you can only vote once, but if you have more than one computer I think you can vote twice.. lol  We are only in second place by about 30 votes and voting ends today at 5!!!

    http://www.aeroforceone.com/index.cfm/pk/view/cd/NAA/cdid/1177058/pid/1175576

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  • jacee
    jacee Member Posts: 1,384
    edited June 2009

    Dianne~ I think the meltdowns are so normal....but doesn't make it any easier when you're going through it. BC is a shock in itself, and I find myself going through cycles as I go through each stage.....learning all I can about it, facing it, going through it, then euphoria after I've finished it. But, oh wait, there's always the next step.  I've done this with testing, then diagnosis, then surgery, now getting ready for chemo......I'm so thankful when I finish one, but before I can even celebrate and relax, it's on to the next  thing. SO OVERWHELMING!!

    Just know that you're not alone. My faith in God is my strength...though I've cried to Him, questioned Him, doubted Him....His mercies truly are new every day. And I know He's right beside me on this journey. Sorry not to preach, but there's just alot of comfort to me in acknowledging that this is so much bigger than I am.

    Don't beat yourself up...you are normal and you are going through a battle.

    There are so many of us who will be here for you...this is a great place to SCREAM & YELL and share whatever you are feeling. 

    Love and roller coaster hugs to you,

    Joni

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  • greytmom_17
    greytmom_17 Member Posts: 162
    edited June 2009

    You guys should read the June chemo thread if you haven't yet.  All of us started at different points in June and have chronicled what happened and when; that would give you some really good info.  I started Taxotere and Cytoxin on June 10 and hair started coming out exactly 2 weeks later.  I buzzed it off, but it's falling out FAST!  I'm expecting all of it to be gone by the end of the weekend. the only S/E's I had were fatigue and minor muslce pain - no worse than a hard workout - on days 2 & 3.  Tired more easily for about a week, but then pretty much feel normal again.  I've been able to get to the gym and do what I wanted.  Some food and drinks had a funny tast for a week or so, but my taste for coffee came back this week - yippee!  I also went on vacation 6 days after my first treatment and felt fine. Good luck July ladies.  The support of the June Jug-R-Naughts has helped me tremendously.  Stick together!

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  • josybee
    josybee Member Posts: 86
    edited June 2009

    Diane, yes the meltdowns are normal, I have the same. Since I found out Tueaday what my treatments will be, I have had a few. I had mastectomy with tram flap reconstruction, it has been almost six weeks. I am just starting to feel a little normal and now I will be starting my chemo July 1st. Everyone has been saying, it's a rough road but you will get through it, so I will think positive and keep my faith in God as Joni has said.

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  • stef58
    stef58 Member Posts: 288
    edited June 2009

    Thanks for the support.Just had to vent this morning and it helped. I feel better if I get off my butt and do something. Got to cleaning up the house after the kids were here last night. Got my crooked cross out and held on to it. This is the greatest liitle thing to hold on to if you need to feel the presense of God. It was given to me by a friend who just finished her one year after BC. Gives me strength. This forum does the same. Thanks for the suggestions. Had my moment for the day. Will all let you know how chemo is after monday. Talked to my advocate at the clinic to aks more questions that come up. Now one for you all, What about a daughter that is 29 and is denial about this whole thing. I thought she would be my greatest supporter, but she does not even seem to what to be around me in person? Will talk on the phone and she says I do is talk about this stuff. It hurts alot. What to do? Hugs to everyone Dianne

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  • jacee
    jacee Member Posts: 1,384
    edited June 2009

    Dianne,

    I have 2 sons, 22 & 20. They are both very different in the way they've responded to me having BC. The oldest wants to know EVEYTHING, wait on me, drive me to appts, etc. The youngest doesn't want to know anything, never asks whats next on my schedule, how I'm feeling, etc. He stays with friends most of the time, and is just going on with life.

     I've come to realize that that is how each of them need to deal with their Mom having BC. And I think it's just easier sometimes to "run" from things we don't want to face.

    Try not to take it  personal about your daughter. I think it's more about her feelings toward the BC than her feeling toward you. It's awkward, it's scary, there are alot of unknowns and it's just something she'll have to deal with (or not).  She probably knows she's not the one you need to lean on, since she can't really deal with it. Hopefully, you have a close friend you can share all the details with, and then just be there when your daughter is ready for more info. It's a shame we have to continue to worry and fret about our adult children when going thru BC!!!

    My mother had BC when I was 34 and I now realize I didn't show near enough concern. I just had no idea how it affects you.

    Good luck on Chemo Monday!!

    Joni

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  • LindaSueH
    LindaSueH Member Posts: 70
    edited June 2009

    Hi July Chemo girls,

    I start my first chemo on July 8, and am anxious as you all are.  My bilateral mx was June 4, and the exhaustion from that was enough to make me crazy!  I went off all my meds, and feel better today.  June 30 I go in for my heart tests and labs, and hopefully will find out which drugs I will be taking.  I will be having 4 rounds of chemo 3 weeks apart, and was told my hair would fall out between 7 and 10 days after the first trmt.  I'm pretty vain about my hair, but think I am going with the scarf and hat thing.  I, too, had to give this all to God...it is too big for me to handle on my own.

    Love and hugs to each of you,

    Linda

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  • PauldingMom
    PauldingMom Member Posts: 927
    edited June 2009

    Hi there ladies! I don't know about the rest of you but my count down is starting and it's got me a little emotional. I too have handed the BC over to Him, but it's all the other stuff that is getting in the way. It's everyone and everything else that's making just waking up hard. And the stinking fact that I am still waiting on one lousy test result to confirm what type of Chemo. I end up with. 

    I have a couple of websites to share with ya all:  www.franceluxe.com. Type in L3083 in the upper right hand search bar. These It's a Wrap are very nice and the owner, Laurie Erickson is as sweet as can be. She will send you one for FREE. She asked me to share this with you all and I have seen it on other post here as well. 

    Also if you find yourself a little short of funds there is a program at www.Heavenly Hats.com

    Also have a look at Mary Ann's creations at www.cjhats.com. She is a stage IIIB survivor and makes some very nice hats just for us. 

    Ya all hang tough and keep in touch here.

    XXOO
    Lisa 

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  • White929
    White929 Member Posts: 53
    edited June 2009

    Kathy16:  I am starting TC chemo this Thursday, July 2nd.  I have not had any prep classes or instructions from my oc.  To say the least, this unknown journey is all I can think about and it is scary not knowing how I am going to feel.  Will let you know how the first round goes.

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  • Jayne_in_UK
    Jayne_in_UK Member Posts: 517
    edited June 2009

    PauldingMom I second what you said about Mary Ann at cjhats.com. I checked out her website and noticed that she has an ebay shop, so I searched on ebay.co.uk. She had some nice hats on there, but there was one I liked from the website that wasn't there. Anyway I emailed her and she put the one I wanted onto ebay.co.uk for me to buy. I ended up buying 3 from her and exhanging several emails. I love that she is a 10 year survivor.

    I went for my chemo pre assessment session today and amongst other things I looked at some wig catalogs. I have ordered 3 to try and I can keep 1 of them. I was given lots of information about the drugs I will be having and a scary red card with details about neutropenic sepsis in case I become ill and have to go to Accident & Emergency. Apparently it is to encourage A&E to deal with me promptly rather than just looking at me and thinking 'she looks fine we'll leave her sat there'.

    Interestingly the nurse who did my pre assessment today said if I want a glass of wine while I am doing chemo I should have one and just try to keep things as normal as possible. My oncologist's registrar said it was best not to drink alcohol. I know which advice I prefer :)

    Well July is nearly here and we will be starting this new experience. Good luck to everyone and let us all know how you get on.

    Jayne xoxo

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  • PauldingMom
    PauldingMom Member Posts: 927
    edited June 2009

    Hi White929, looking forward to your next post. It's funny how Jayne-in-UK is getting all this Pre- info. and we get nothing. It looks like you already found the post here about what to expect with Chemo. It all looks like good advice.  I have a sister in Indiana, just thought I would throw that in there. 

    I have decided to give embordory a try. I thought it would be something to do while sitting during chemo. Does anyone else have any good ideas on what to do to keep busy.  I can not stand to sit still for long periods of time. I'm a little AADD but do not take meds for it. I like to read but generally for only about 45 minutes at a time. I'm afraid I am going to get REAL bored REAL quick.

    Did anyone's Doc say to avoid going out to eat? I thought that was a little odd for my doc to mention, bu then again I've seen some of these health reports and am thinking that perhaps he's right. Home cooked grub might be safer.

    Jacee, I also have older children. Age 22, 20 and 18. The oldest is a boy the other two are girls. They are all very supportive but each on a different level. The 20 year old girl has always been very responsible and is even going to take me to and from my next surgery. The oldest boy is scared. He always sees the glass as half full. He wants to help but doesn't know how and he worries way to much. My youngest is very busy starting college and seems very happy that her big sis is helping out more. She is helpful and honest about all of this, but often times finds it easier to not be as available as her sis. (Does that make sense) 

     Well my ladies, enjoy the rest of June, have a fun 4th of July holiday you U.S. citizens, and please keep posting!!!!!

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  • elisheva
    elisheva Member Posts: 80
    edited June 2009

    I am starting chemo also on 7/2. But I notice that all of you are doing TC or ACT. I will do CMF - heard that the side effects are milder and in fact know a few women who have gone thru it with little discomfort. Is anyone here doing CMF?

    I saw on another thread someone who keeps a short journal, listing all her reactions to the chemo, day by day. What a great idea. And about an occupation while you're sitting in the chair: can we use both hands while the IV is going into the arm? I am a knitter and wondered about the possibility of doing that. It's obviously OK if you have a port, which I don't.

    I hope we'll continue this thread once treatment starts!  Good luck to you all,

    Elisheva.

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  • Kathy16
    Kathy16 Member Posts: 135
    edited June 2009

    Thanks everyone for the posts.  I am a go for this Thursday for first chemo.  Did everyone see the threads on the preparing for chemo recommendations?  I made my own little list from those.  I made a list for a "going to chemo bag" for myself (from the recommendations on the other posts on other lists) and a "going to work" bag for the week after I have the chemo when I'm going to try to work.  Let me know if You want me to cut and paste my lists in case anyone wants to adapt and/or add suggestions.  Lisa, I love your line about the Titanic and dessert.  I'll keep everyone in thought and prayer when I go on Thursday since some of you will be doing the same thing and others will be "counting down" until you have to go in.  K

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  • stef58
    stef58 Member Posts: 288
    edited June 2009

    Hey everybody I know that chemo is not that bad. Had my first dose this morning. A/c. They did tell me a will do a DD every two weeks. This threw me because it was first 3 weeks. They said it is aggresive and works really well.Get neulasta short in the morning at the local hospital. Do not have to drive an hour to get there. Not bad, nurses were great. Feel a little jittery this everniong from the anti-nasuea. Decadron. The thing I found about this is that the feeling before is far worse than the actual experience. The nurses bend over backwards to do anything for you. Take a book, movie, magazine or needle work it ges by fast. When out to lunch afterwards. DO eat light the before and after. I am experience at little heart burn but took some antiacids for it. You will all do great and take the time for rest and some exercise. It helps to move around. Hugs ands strength to you all Dianne

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