August 2011 chemo, anyone w/ me?!

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  • YaYa5
    YaYa5 Member Posts: 667
    edited October 2011
    vtEllen, i'm going to rads after chemo.  i asked my onco on monday if i could wait until after the new year and he said if my RO approved it, he wouldn't have any problem with that.  i just hate to be really tired during christmas.  on the other hand, i hope it's ok to wait that long.  i'm not finished with TCH until november 14, so that seems a long time.  who knows?
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  • missey29
    missey29 Member Posts: 48
    edited October 2011

    vtEllen: I am scheduled for RADs after chemo, as well. Not sure how many or when it will start. Will ask Onc tomorrow.

    Missey29

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  • Grimbol
    Grimbol Member Posts: 326
    edited October 2011

    I will have 6 weeks on Rads, I should finish chemo right before Thanksgiving, but I don't know when I would start rads, hadn't thought about the tiredness aspect, I can only think about whats happening right now!!  I think I would just continue on, I want this to be over, BUT I don't have young kids to think about so much either for Christmas.  I have already warned my kids it will be different this year and they will be in charge of festivities.

    So, Ellen, you don't find the nueropathy to be cumulative on Taxotere?  Mine definitely is, and they told me it would be too.  I am on Taxol. They might have to stop it early if it gets any worse.  I am supposed to get 6 tx, but the next one is 4 and I'd be happy if they stopped it there!!!

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  • jbagley
    jbagley Member Posts: 102
    edited October 2011

    I am on day 3 of taxol tx. I feel like crap. Sore throat, muscles in my neck, hiccups that hurt and a really bad headache. Took some pain meds this am but only helped a little. My hands and feet are more tingly, and slightly swollen. No rash though. Sorry to whine but I feel like a mack truck has hit me. I am a bit sick to my stomach??



    VtEllen, I will be getting rads too for 33 radiation tx. I met with the radiologist last week. I think that the s/e are cummulative, cause I wasn't this bad 2headache weeks ago......



    Hugs jennifer



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  • Kasi
    Kasi Member Posts: 216
    edited October 2011

    I will have either 28 or 33 rounds of Rads - they haven't decided on which. Hoping for 28. Actually I am insisting on 28, LOL. They said it will start 3-4 weeks after chemo (my last one is Nov 10) so I am planning on 3 weeks. I want to get this done and OVER WITH! As it is, I have to wait 6 months after rads to have my implant exchange surgery, so we're talking the end of June 2012! Ugh!

    Had a mini-meltdown this morning. It now literally takes me 45 minutes to do my makeup and "hair." I have to fill in my brows really well (they are SO SPARSE now), I lost almost all the lower lashes on my left eye and eyelashes are getting sparse, too. NOT COOL. If I was running late, I used to go without makeup. Now I have to spend almost an hour doing it if I want t go out in public just to look passable. And I guess one of the SEs is hyperpigmentation, so my once faded freckles on my face are SUPER dark and I am even getting freckles on my palms. And I put hot rollers in my stupid wig every day so that it looks somewhat decent. I seriously have never felt worse about my looks in my life.

    When I got my nails done last week, I noticed that the nail beds on my thumbs are a little dark. If I lose my nails because of this, I think I am really going to lose it.

    Thanks for letting me vent. Had my 1st Taxol last Thursday and it hasn't been so bad. Just the bone pain but it hasn't been anything that a few ibuprofen haven't taken care of. I hope you all are doing well! HUGS! 

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  • jbagley
    jbagley Member Posts: 102
    edited October 2011

    Kasi, the freckles on my face have darkened too, and I have my dad's complexion (red head) so I have a lot of freckles anyway. But they are wayy dark! And on my palms too. My nails are ok so far.



    Hugs

    jennifer

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  • MizMarie
    MizMarie Member Posts: 332
    edited October 2011

    I'll also be getting rads, but I will have surgery in between (doing chemo first to shrink the tumor).  I haven't even asked abut how many zaps or when - just getting through chemo is all I can focus on, and December seems so far away yet.  My nails seem to be OK so far, but I trimmed them 2 weeks ago and they haven't grown at all since.  I hope I can hang on to them - next to my hair, are my favorite feature.  Bone pain has subsided, but the fatigue seems to be more persistent this time.

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  • summergirl1
    summergirl1 Member Posts: 182
    edited October 2011

    I will be having rads too 35 total 5x a week for 5 weeks , I finish chemo Dec 1st so will probably start just before christmas, although I am not looking forward to it as I will have to stay in the hosp for 5 weeks as its 100 miles away from where I live,  I just want it over with.and get my life back to normal again, 

    Kasi, I feel for you it is rough, I too hate this and no matter how long I take to get ready I still dont feel good about myself, my sster wanted to take me to her beautican the other day I just laughed and said well unless she wants to paint flowers on me there is not much she can do LOL , cant have manicure , dont need leg waxing as the hair fell out,no eyebrow waxing as I want to keep the eyebrows I have , cant get my hair done as I dont have any, LOL and cant get spray tan which I used to love as I was told not to since I had my lymp noids removed, I swear this should be called the  fugly disease  because there is nothing we can do to make us feel pretty, but I am sure going to make up for it when this is over , !!!!! 

    On a good note think Im finally feeling better now after TX3 , TG  good luck to all  

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  • Robyn6463
    Robyn6463 Member Posts: 167
    edited October 2011

    My oncology nurse told me that the S/Es are cumulative also, and they sure feel that way! Still fighting a rash, welts. Benadryl seems to be helping, but it makes me sleepy. I don't need to be any sleepier than I already am! 

    So far no problems with my nails, except maybe they break easier. 

    I pushed the doc and insisted on starting radiation as soon as possible, because I want this DONE in 2011! It'll be either 28 or 33 treatments, depending on if my insurance approves the "boost." I have my "simulation and CT on 11/3, and should be done by 12/23! I'm really hoping to not carry this with me into 2012! 

    In 9 more days, my final T/C will be behind me! I'll still have to recover, have the port removed, etc. But I'll be done with chemo! Ellen - you've got a few days less than I do even! WOOHOO!!!! 

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  • DebinUtah
    DebinUtah Member Posts: 75
    edited October 2011

    I am so jealous (in a loving way) of you gals who are almost done with chemo!!  I have tx 4 of 6 on Friday.  I know I'm half way, but it still seems so far away when I think about going through what I've been through in the last 9 weeks AGAIN!  I'm also having radiation afterwards--6 weeks 5x a week.  I can't decide whether to take a break and enjoy Christmas or just plow through.  I've been on half-time sick leave at work, but I hoped I'd be able to go back full time in January. I''ve heard that the radiation makes you really fatigued--anyone know if that's true?

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  • michelleo13
    michelleo13 Member Posts: 342
    edited October 2011

    I'm on day 2 of Taxol tx #1 and so far I'm feeling really good. My face was red and flushed this morning, but it's better now. No nauseau and so far no issues with gas or foul-tasting mouth. I'm waiting for the body aches to start. So far I haven't had any fingernail issues or neuropathy. Not sure how long that will last. I'm expecting this will get rid of the 10% of hair that's still hanging around on my mostly-bald head! I still have my eyebrows and lashes, althought they have thinned a lot.



    I will be having 30 rads after I'm done chemo. My last chemo should be Nov 15 so I expect I'll see the RO toward the end of November and then start rads mid-December. Hope to be done end of January. Kasi, I totally agree with you...I want this all to be over so the sooner the better!



    Kasi, I also have some dark spots on my skin and hate to go anywhere without makeup. My wig is short so at least I just put it on, comb it through a bit and it looks half decent.



    Oh Carol, your beautician story made me laugh out loud. Fugly disease...too funny! Sad, isn't it? I just keep telling myself it'll be over soon. I think I'm going to book a spa day before I go back to work when this is all over!



    Deb, I've heard different things about rads. I've heard that it makes you tired, but I've also heard that after chemo, it's a piece of cake. So I'm not sure what to expect. My short-term disability benefits run out on December 31 and it looks like my rads won't be done until end of January. It seems like a lot of hassle to do all the paperwork for long-term disability for a matter of a few weeks as I expect to be back to work soon after completing rads. I was wondering about suggesting that I start back part-time in January while I'm doing rads. Not sure if I should be pushing that or not. I'm not getting any pressure to go back. My boss has been awesome and has told me several times to take all the time I need and focus on me...work will always be there!

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  • vtellen
    vtellen Member Posts: 345
    edited October 2011

    Ok. Wow. Lots of action today!

    On the continuing on w/ rads after chemo. My docs didn't leave me any option. Maybe I have one, but they said I would start as soon as possible after last dose. Which probably will be 3 weeks, because I have to get my counts back up. There was a study that I read. It was done on women over 65 who were not having chemo. And it showed a 19% decrease in recurrence w/ women who did not delay rads after lumpectomy. So, obviously none of us fit in that group, but it still makes me realize that the rads are an important part of the treatment....

    Deb in Utah- I was told that fatigue increases towards the end of the radiation. Weeks 4-6 or so. I totally understand your jealousy :) I promise to be brief in my whooping it up after I am done posts!

    Robyn- my chemo NP said fatigue is cumulative, but nothing else. Who knows what to believe?! Ha!

    Kasi- You always have such good info! I didn't know about the hyperpigmentation! But, I can for sure see it. I was wondering. I have a ton of freckles and moles. I go to dermotologist yearly and my appt came up this week. I cancelled it because- first, they can't actually remove anything right now. Second, I can't bear the thought of another doc appt. I have enough going on... And, yeah. I feel as though no matter how long I spend on my apperance, it just ain't gonna cut it! My eyes are looking so red and teary right now for one thing. I went to the co-op this am. I hate going there because I always see people I know. This morning, 2 people told me enthusiastically " you look good!" They mean well, but it was all I could do to not say " Oh, yeah rigghhttt!" or some other sarcastic come back. I mean I was wearing a wool ski cap for crying out loud!

    one last thing.... jbagley- you and I have similar SEs. I know well how you feel!

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  • Taylor777
    Taylor777 Member Posts: 141
    edited October 2011

    Michelle-Sorry about your friend..You have a great outlook!! You just had a lumpectomy and rads will be right on your breast right?? Are they doing rads to ur lymph nodes bec. you had some positive ones?? I'm just asking bec. I think here in Canada they do things different than the US. My onc is saying that I prob. wouldnt be needing rads bec. I only had 1 positive and that I had a mx. I told her that I'm premenopausal grade3 and 1 positive node should qualify me for rads. She's sending me to a RO for his oppinion. I don't understand so many have had mx and they are still getting rads but here in Canada she said prob no!! I want to do everything I can now so this beast doesnt come back!!!

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  • michelleo13
    michelleo13 Member Posts: 342
    edited October 2011

    Taylor, yes I did have a lumpectomy. The rads will be to the nodes and a boost to the breast where the lump was removed.

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  • vtellen
    vtellen Member Posts: 345
    edited October 2011

    Taylor and Michelle- I had a false negative SE in surgery. But, we didn't go back in because the met in the SE was small - 2.2mm. We are figuring that was the extent of the spread. Well, they're figuring and I'm hoping like crazy. But, they are talking about coming in w/ the rad at an angle to cover the lymph area and the lump area. There is research now that I think supports not going back in and taking a ton of nodes, it isn't proving to be beneficial.

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  • Kasi
    Kasi Member Posts: 216
    edited October 2011

    Thanks for making me feel better, you guys! I wish that somehow magically we could all be in the same place while we were going through this!

    OK, Summergirl, are you kidding me right now with the no spray tan because of lymph nodes removed? What??? Why??? Like, you can't have a technician spray you? Or the spray tan booths? I guess this will be another thing that I will throw caution to the wind to, because I love spray tans! Argh! FUGLY disease is so flippin' right!

    Jennifer, Michelle & vtEllen - glad I am not the only one with the stupid hyperpigmentation thing. I read online that it could be a side effect. When I whined to my onc about it and complained about how ugly it was, she just kind of looked at me and said "Hyperpigmentation is a side effect" and that was the end of that! No sympathy from her, LOL! 

    Michelle - I'm so sorry about your friend :-(

    vtEllen - Ugh, I have a hard time biting back the "Yeah, RIGHT!"s when people say I look good. Give me a break, I know I don't look good. I know people mean well but...

    Taylor - The Rad Onc told me that the school of thought on rads with women who have had mastectomies has come back around again. I guess they used to do rads on everyone; then the thought changed and people with mastectomies and only 1-3 positive nodes didn't need it; now it has changed back to the way it was before. He said he would talk over my case with "the Board" but felt confident they would all agree for me to have rads, at least 28 with a possible 5 more "boosters." He said with the tissue expanders, he might forego with boosters. But I don't think this is something that is necessarily US vs Canada; all the docs are different. I met another woman on here in the US who went through all of this last year and she was just like me: double mast and 2 positive nodes and she was not given rads.

    I'm glad to hear that some of you haven't really had nail issues! Hurrah! 

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  • Robyn6463
    Robyn6463 Member Posts: 167
    edited October 2011

    Taylor, I've read or been told that rads are almost automatic if you've only had a lumpectomy, but if you've had a mastectomy, they aren't as definite, as the tissue that they focus on is also gone...less of a chance that anything was left behind.My nodes were negative, sort of...

    I'm sorry about my post, don't mean to boast about being almost done, didn't think about those of you still plugging along. We're all getting there! 

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  • JMULL
    JMULL Member Posts: 46
    edited October 2011

    Hi All - TX #4 of AC today and so far so good.  Yay!  So happy to be done with the Red Devil!!Took a nap this afternoon and don't feel like eating anything but at least I am functional!  After TX #3 - like day 8 or 9, I developed a rash on my forhead.  It looks as though I have a red square on it.  MO says dry skin.  I have been putting aquaphor on it so know I look like I have really greasy skin on top of everything else!

    I have not yet lost my eyebrows - as far as I can tell.  They are really light anyway so normally no one can see them.  My eyelashes have always been sparse as well and I think they are holding on tight.  I did notice several spots on my face have appeared darker but I just chalked that up to being so close to my super white scalp that they just looked that way.

    I am supposed to be getting rads 6 weeks x 5 days after chemo.  And I had a full mastectomy.  The MO said it would probably start 4 weeks after chemo so that puts me at the end of Dec/beginning of Jan.  I am going to have another consultation with the RO, however, because he told me when I first saw him back in May that if I had a mastectomy that I wouldn't have to have rads. 

    Kasi - have you tried scarves or hats?  They might be less work...  I myself feel quite silly in them but I think I am going to sign up for a Feel Better class to make to see what they suggest.  I watched a couple of youtube videos to see how to tie them and they look so cute on the people in the video but I either feel like a pirate or a gypsy.  I have embraced my "toplessness" and normally only wear my wigs to work and hats other places.  Although haven't been to too many "other places" so...  I think you said you have a 12 year old?  My daughter just turned 12 on the 26th and my littlest will be turning 3 on Monday.

    I am in a bit of a dilemma...I have a coupon for a half day at the spa that I received for Christmas. Supposed to be a manicure, pedicure, facial and massage. I am torn with what to do since we are not supposed to have manis or pedis and I am assuming a facial would be right out as well. Does anyone know? I need to remember to ask my MO about it in a few weeks.

    Robyn - no worries! It's good to see light at the end of the tunnel.  We are all getting closer to be done and that is what is important!

    Best of luck to all the rest of you.  Hugs and prayers sent to all my August sisters.  WE CAN DO THIS!!

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  • 46MD
    46MD Member Posts: 25
    edited October 2011

    check out this new information/study on A & H

    http://www.google.com/hostednews/ukpress/article/ALeqM5j5oGaWu5vdQK__zOGdXODoyV6GCw?docId=N0780021317826621739A

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  • 46MD
    46MD Member Posts: 25
    edited October 2011

    Also to those struggling with the hair issue, I've discovered that unless you want to dress up, a bandana does the trick. I also went online and watched a few videos, and I wear mine like a 'skull cap', which is where you tie it in the back, but tuck the parts sticking out, in before you tie. I'm much more comfortable going out in public or to work now. Walmart has a ton of bandanas for $1.00 each. I hope this helps.

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  • oaktownmom
    oaktownmom Member Posts: 114
    edited October 2011

    Congrats to those of you who are almost done!  Ugh - I have 3 more months to go, as my onc is going to have me do weekly taxol x 12 (just finished my AC x 4 last week).  My first taxol will be next week, and I won't finish until 12/27.  Then I'll do 6 weeks of rads - probably starting in February.

     For those already doing taxol - are you taking glutamine, b6 and folic acid?  If so, what doses and frequency?  I'm not sure if I should be starting those now in advance of my Tuesday infusion, or waiting until after.

     Speaking of spa treatments - has anyone gotten a massage since tx?  I had a bilateral mastectomy, so haven't really felt like I could lay on a massage table.  And now with the port, I'm not really sure how that factors in...  but I would sure love a good massage.

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  • vtellen
    vtellen Member Posts: 345
    edited October 2011

    Istreet- I'm getting massages! I am able to lay on my stomach. But, she does a lot of work while I'm on my back. I think that you could work around it.

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  • oaktownmom
    oaktownmom Member Posts: 114
    edited October 2011

    vtEllen - good to know!  Is there anything special they need to do to avoid lymphedema risk?

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  • allformy4
    allformy4 Member Posts: 33
    edited October 2011

    I had a DMX and I go to PT b/c my range of motion stunk and I had "chording" or "anxillary web syndrome".  In addition to strengthening, I get massaged -it's wonderful and loosens up all those angry muscles.  My Onc rcently told me that they are finding light weights help w/lymphedema precautions.  You have to use a PT that knows what they are doing though.

    I'm glad to hear I am not the only one that is a freckly face -I look like a bad commercial for sun-damaged skin.  I had Taxol tx #1 today -so glad I had no reaction b/c I was so worried (especially since today is the 5 yr anniv of my fathers death from leukemia!)  I was told I am slightly anemic, but my Onc sd theres not much I can do about that -she doesnt like vitamins and supps, she did say I can drink ensure -nvr had it, has anyone else?  I don't eat red meat, and even pizza turns me off these days!

    I know I don't come on here much, but you guys really make me feel better -especially since I have 4 kids under 12, and I see some of you do to!  Until today, I was always the youngest one at chemo -scarey though that the place is always packed!!  Have a great days everyone!!!! (PS -I can't for the life of me figure out what SE's are? symptoms something??)

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  • allformy4
    allformy4 Member Posts: 33
    edited October 2011

    oh 1 more thing.... does anyone have tissue expanders in?  I am sched for my implant swap 4 weeks after chemo (4 days b/f xmas -uugh) and then rad 4 weeks after that... my RO likes to do it b/f the surg, so they will have to duke it out --she sd my boob on the other side will get in the way of the rays....not such a bad thing they will be so perky right??? lol  ---always wanted a tatoo also Tongue out

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  • michelleo13
    michelleo13 Member Posts: 342
    edited October 2011

    Robyn, don't feel bad about boasting. I know we'll all be happy to be done and we'll all celebrate when we are done and continue to cheer on those who are still undergoing treatment.

    JMull, I was disappointed that the LGFB class didn't cover more about scarves. They barely gave them a mention.

    Istreett, I have just started Taxol and haven't taken any supplements. My ONC prescribed some pre-emptive pain killers but I haven't taken them yet. I'd rather wait and see how bad the pain is before pumping myself up with more meds.

    All4my4, S/E are side effects.

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  • cupcakies
    cupcakies Member Posts: 71
    edited October 2011

    Hi allformy4, i just had my first Taxol today too. thank God no allergic reaction either. i just slept most of the time!

    i'm also anemic, but my onc informed me that some beans (kidney beans, lentils, lima beans) and breakfast cereals (raisin bran, corn puffs, cheerios, and cream of wheat) are a great source of non-meat iron. 

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  • cupcakies
    cupcakies Member Posts: 71
    edited October 2011

    Hi lstreett - i'm taking glutamine (10mg / 3x per day, for 3 days), B6 (100mg / 2x per day, daily), and folic acid 1mg / day, daily.  I didn't start until today (1st day of Taxol). I got most of mine from drugstore.com or GNC

    Also, allformy4 - i've tried the creamy chocolate, homemade vanilla milkshake, and strawberry milkshake ensures.. they are actually pretty good! 

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  • Chava
    Chava Member Posts: 50
    edited October 2011

    Had my first taxol of 12 weekly. It was shorter. I sleep through it with the benedryl. I didn' have the yicky tast smell in my mouth during infusion as much. Hoping to be S/E free as this one is supposed to be easier thatntake a/c and I handled that one pretty well. My onc said since I haven't lo my eyelashes and eye brows yet I probably won't and hair can start growing BACK during taxol.....just praying for non bone pain or numbness. Hope you all have a s/e free week and those who are Jewish have a meaningful yom kipper. It makes it a bit more real praying for life this year than breezing through it as I have done in other years. We should all be inscribed for a good year.

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  • vtellen
    vtellen Member Posts: 345
    edited October 2011

    Istreet- There are masseuses who are trained  in lymphatic drainage. As I only had 1 node, that isn't much of an issue w/ me. But, if you had more nodes, you may want to look for someone informed in that area. My masseuse uses a lighter pressure when I am neutropenic.

    Michelle- Love your new pic! Your wig looks very cute! I've been thinking of changing mine - although I am refusing any photos now.... The pic that I am using now is from a few years back. My daughter and I were on a buying trip to NYC, and she insisted on going to Madame Tussand's. I chose it to symbolise that I was putting up my dukes to fight cancer! It's not because I'm a boxing fanatic! Ha!Smile

    My Anti Cancer book came yesterday. Not sure that I am capable right now of mustering the attention span needed to read it, but I did pick up some of his food and cleaning product recommendations. I have always flirted w/ buying all organic, all natural. The book, and bc have thrown me over the edge. It is very easy to buy organic here- there are so many farmers here in VT.

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