April/May 2012 Chemo hang out

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  • christina0001
    christina0001 Member Posts: 1,491
    edited August 2012

    Just wanted to pop in and congratulate those of you who have finally gotten to the end of your chemo - hooray!!! - and encourage those of you still going through it. You have all gone through so much. You are all in my thoughts and prayers.

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  • chapter4
    chapter4 Member Posts: 155
    edited August 2012

    Anyone having pain in their hips or lower back 3 to 4 weeks out of Taxol? I can't figure out if it's from walking for exercise or after effects from Taxol still.

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  • docziggy
    docziggy Member Posts: 17
    edited August 2012

    Hortense - So glad I'm not the only one with weird hair patterns. I also have patches of coarse, darker hair and very fine almost transparent hair. So from a distance I look like I have mange! :D I'm glad you were able to hang on to your hair!! I don't have stripes on my fingernails, but I do have definite ridges and some discoloration. 

    IndigoMont11 - I too had tearing almost constantly while I was in chemo (I had docetaxel and cyclophosphamide) - it was pretty annoying! (esp when I was trying to run in the foothills and couldn't see anything for all the tearing!)

     Is anyone currently in radiation? I meet with the rads doc Thursday, so presumably begin next week? Maybe?  (dancetrancer - thank you for the hint on pre-rad moisturizing!! I'm going to wack our massive aloe back a bit and use that as well).

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited August 2012

    docziggy- Head on over to the Summer 2012 RADS HANGOUT on the Radiation forum--- that's where most of the gals from here who are having rads, have moved on together.

    http://community.breastcancer.org/forum/70/topic/789322?page=17#idx_490

    Also check out using Miaderm cream and caldendula cream/gel for rads.  Ask your RO if the Miaderm is available at the place you are getting radiation.  If you can't get locally, you may have to purchase it on Amazon.  Good luck with the rads!!!

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  • docziggy
    docziggy Member Posts: 17
    edited August 2012

    Thanks melrosemelrose! (Btw, I grew up in Houston!) I just joined the August rads, but I'll go visit the summer 2012 one too. :)

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited August 2012
    docziggy- I bet you don't miss the humidity of Houston!!!!! I live close to the Rice/Med. Center area.  What part of Houston did you live in?
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  • kjiberty
    kjiberty Member Posts: 1,385
    edited August 2012

    DocZiggy:  I am officially half way through (17/33) as of Friday.  See if your RO will give you Miaderm for free.  The tubes are about 27 on Amazon. Mine gives them plentifully for free.  Their cost is $16.   So far, just a subtle shade (not even noticeable) pinkness.  

    Christina:  Thanks for checking in on us and the well wishes.  

    Cottontail:  Before you know if, you're hair wil be growing and growing.  I saw my sister a month ago (1 week pFC) and saw her again this weekend, 7 weeks PFC, and she couldn't believe it.  You can no longer see my scalp and my hair is about 3/4 inch long.  There is a light at the end of the tunnel.  Hang in there, girl! 

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  • mt4ever
    mt4ever Member Posts: 105
    edited August 2012

    Indigo I am 4 weeks out PFC and am still tearing up.  We were riding in the car yesterday and my husband looked over and said why are you crying!  LOL 

    I hate taxo"tear" and then I now have an infection on my 3rd finger right hand so will probably loose my fingernail and I had my first herceptin only infusion Thurs (8/16) and also have an infection at port site!!  (the first one I have ever had at my port site!)

    I feel like after my 6th T/C treatment I am falling apart!  Hopefully getting better soon!! 

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  • nofear2012
    nofear2012 Member Posts: 160
    edited August 2012

    Chapter4 I have pain in my lower back/spine by my rib cage. I have been gardening, but the pain I noticed before that. I also am taking medication for thrush so I am not sure if that might be part of it. My road after chemo has been rough so it is hard to tell.

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  • docziggy
    docziggy Member Posts: 17
    edited August 2012

    Melrosemelrose - I lived south of 610 off of Stella Link. Did my undergrad at Rice, so I know that area well!! :)

     Thanks for the advice, kjiberty! I will ask her on Thursday.

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  • LisaG65
    LisaG65 Member Posts: 65
    edited August 2012

    i am now wondering breast surgeon suggests RADS even though my margins are clear, i dont want rads, i got a script for tamoxafen, and also asked for a break from everything, my onc gave me 3 weeks then i am back on herceptin, but wants me to start tamoxofen yesterday. i wonder what could happen if i just did nothing, any input, i dont want rads. i dont want to put any more stuff in my body, i kinda feel like what ever is going to happen will happen, regardless of all of this meds. or the meds could cause other issues. any input is welcome thank you

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  • chapter4
    chapter4 Member Posts: 155
    edited August 2012

    I'm thinking of skipping the tomoxifan....I've had one mastectomy and plan to have the other breast removed as well....my surgeon says without both breasts it's highly unlikely I will see reoccurrence....so he says I can skip tomoxifan if that's what I want....they did push radiation following chemo which I am doing.

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  • kjiberty
    kjiberty Member Posts: 1,385
    edited August 2012

    Chapter4:  Good luck with your decision.  Both MO and BS recommended it for me with m DX.

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  • lisa2012
    lisa2012 Member Posts: 652
    edited August 2012

    I have been taking Arimedex for a month and had no side effects to speak of, or that I've noticed. A hot flash every week or so, that's it. What is the down side of taking it? Asides from drying you up, etc?

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  • haehae
    haehae Member Posts: 7
    edited August 2012

    Has anyone considered doing extra rounds of TC for satge I IDC, 0 nodes? My oncologist recommends 4cycles, but there are no studies that has compared it to 6cycles. My onchotype is high, 32, and I just want to be sure I'm doing as much as I can. My nodes were negative but they found a few single cancer cells , which is considered negative but makes me nervous. Does anyone know of any current studies that address this question. Thank you.

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  • Rose_d
    Rose_d Member Posts: 144
    edited August 2012

    Chapter4, I am 4.5 weeks and I have been having hip pain. It al let felt like a numbness like I slept funny but was every day and both sides. I don't think it was for exercise.



    I had my TE exchange surgery on Monday and the hip pain seems to have stopped I think because I'm too busy thinking about the pain from the drains :)



    Since you're feeling it too I'm assuming it's lingering side effects.



    I have a bottle of tamoxifen sitting on my sink counter, I'm afraid to start it but was given a slight reprieve give the surgery. I had thought that we were actually getting the largest reduction in the odds of recurrence from the tamoxifen (even more than from the chemo). I don't have the specifics in front of me but my doc went through all of the numbers and I think the tamoxifen was something like a 12% point decrease which is really large. Is that not what you are hearing?



    I'm actually still struggling with the radiation decision - I've had 1 doc say absolutely yes, 1 say you're in the grey zone and could go either way, and my breast surgeon say that the first doc is nuts and that she would lean away from doing it given the side effects vs. what she thinks is only a 1-2% decrease in the risk of local recurrence.



    The big debate seems to be on the LVI which was there but according to the surgeon barely noticeable and would likely have been missed if they had just cut a slightly different way.



    I'm going for a 3rd RO opinion in a week a UPenn and then just need to make a decision and stick with it.



    I'm really really hoping the side effects of the tamox are manageable and that I can stick with that one. I'm thinking of it as an insurance policy for us ER+ girls.



    Rose

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  • haehae
    haehae Member Posts: 7
    edited August 2012

    chapter 4, I believe the tamoxifen not only help prevent local recurrence but distant recurrence, which would improve your overall survival . having estrogen positve BC is a plus for this reason. I would consult with your mo before foregoing the tamoxifen.

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  • SaturnRing
    SaturnRing Member Posts: 36
    edited August 2012

    Hi Rose,

    Like you, I fall into the grey area for Rads, I too had only ITC (isolated tumor cells), so though technically I am considered node negative, I was recommended for rads because of my tumor type which was triple negative. Actually I consulted 3 different institutes for rads, 2 said go for rads and 1 said rads is an overkill.

    But I have decided to go with rads, since I want to throw everything at this triple negative stuff.

    Good luck with your decision.

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  • kjiberty
    kjiberty Member Posts: 1,385
    edited August 2012

    Haehae:  I had Stage 1, 0 Nodes, 4 rounds of t/c, Onc. score of 27. Just finished 23/33 rounds of radiation.  

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  • lisa2012
    lisa2012 Member Posts: 652
    edited August 2012

    Kjliberty we are very similar.Plus we started chemo on almost the same day (April 18.) Only I am brca1 so I had the BMX.no rads because no breast tissue left. The Arimedex is like tamoxifen but for post menopausal ladies like me. I'm thrilled that it is not bothering me. I'd heard some nightmare stories, like 40% have joint and muscle pain, 10% unbearable (according to my MO). So far so good. I did realize how important it is for reduction of recurrence. Darn I used to like having estrogen!

    Wishing all a good weekend.

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  • LisaG65
    LisaG65 Member Posts: 65
    edited August 2012

    thats great! i did my chemo first, this guy seems to be pushing it, and everyone who speak t says they regreat the rads. i was reading all i can on tamoxafen and i dont want cance in my uterus

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited August 2012

    haehae:  check out this article.  

    Breast Cancer: Four Cycles of Adjuvant Chemo Sufficient for Most Patients 

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  • haehae
    haehae Member Posts: 7
    edited August 2012

    dancetrancer: Thank you so much. Very impressive, I don't think my MO knows about this study. I've tortured her with this question for the last few cycles, and have gotten second opinions. They have all said there are no studies to indicate whether 4 equivalent to 6. It's hard to come to the end of my 4th cycle and say that was enough. Hard to shake the feeling that there's got to be more that I can do to ensure a cure. The TAC vs TC clinical trial thread addressed this issue but most of the posts were from 2009 and I think this study was mentioned but I didn't know they release their data. Thanks again.



    kjiberty: My next decision will be to go on tamoxifen or do an oophorectomy and start aromatase inhibitors. I'm 52 and my menopause status in unknown. Was on bcp's up until time of dx.

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  • Ellendou
    Ellendou Member Posts: 139
    edited August 2012

    Haehae I had my fourth treatment yesterday and also asked about the 4 treatments instead of 6 and he told me about the above article.  Now its on to radiation and then tamoximfen.   Good luck to you.

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited August 2012

    haehae - you are most welcome!  This study helped me feel more comfortable stopping at 4 (I had lots of SE's).  They just published all of the data in an article in JCO last month.  Here is a link to the full article, if you are interested!

    Six Cycles of Doxorubicin and Cyclophosphamide or
    Paclitaxel Are Not Superior to Four Cycles As Adjuvant
    Chemotherapy for Breast Cancer in Women With Zero to
    Three Positive Axillary Nodes: Cancer and Leukemia Group
    B 40101 

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  • lisa2012
    lisa2012 Member Posts: 652
    edited August 2012

    Well, glad my MO planned 4 and thats all I did. It was taxtotere/cytoxan though.

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  • lisa2012
    lisa2012 Member Posts: 652
    edited August 2012

    Ok here's a question...I know we can ask anything, right? I am having a tough time getting back into intimacy. Still pretty hairless, recovering from exchange surgery and not sure about how that affects me, just not feeling in my body. Not that I was a tigress before either, but now it seems so distant. Fake interest and hope it is quick? I hope it will get better but I am depressed about this aspect of things.my DH is patient but I didn't think he knows how I feel, more like "still post-op/ chemo etc." my body is not mine, i feel like an alien though i look ok. has anyone else dealt with this?

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  • kjiberty
    kjiberty Member Posts: 1,385
    edited August 2012

    Lisa:  YOu are NOT alone.  You will find there's a LOT of people in the exact same boat as you are.  I am going to my gynie on 10/1.  It will be a major topic of discussion.  It should be interesting, because his wife had breast cancer three years ago, so I get to hear it both a professional, personal and male perspective. 

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  • LyndaMarie
    LyndaMarie Member Posts: 92
    edited August 2012

    Lisa - Ditto the "you are not alone" of Karen. I am 4 days PFC and will have surgery 4 weeks from today. I am hoping to feel enough better post chemo to have some desire before surgery. The chemo SE's [dry,dry,dry] make it very difficult. My DH has also been phenomenally patient and would never pressure me but it is a part of my life I want back.

    That said, I haven't been online for quite awhile as I recuperated from AC #3 at my parents house out of town and then returned to final chemo and a return to the school year. So official announcement...I am PFC!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Done! Fine! Complete! No more chemo for me!! Recuperating one last time but done!!!!!!!!!!!!!!!!

    I have chosen to have dmx but also have decisions to make regarding RADS, sentinel node biopsy, reconstruction and tamoxifen etc.... It seems like one endless decision. Very tiring. Hope you are all doing well.

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  • Cottontail
    Cottontail Member Posts: 374
    edited February 2013

    Two and a half weeks PFC, and I would say my mouth is maybe 75% normal. I'm still more sensitive than normal to spicy foods (which hasn't stopped me), some foods taste a bit "off," and I occasionally get the metallic taste, but it doesn't last more than a few hours.



    Still no new hair growth, I'm sure it will start soon.



    I go for an EKG late this afternoon to find out if my chest pain is heart damage from the chemo.

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