Starting Chemo October 2009

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  • micheleboots
    micheleboots Member Posts: 1,993
    edited November 2009

    Mornig ladies,

    I hope everyone had a good restful night sleep...

    Enjoyful..about the PICC, it is not bad.  I have  a nurse who comes to my home once a week to change the dressing and flush it out.  It is not a lot of trouble.  It is a better option for me than the port.  I have to cover it up, with plastic sleeves, when I shower so it doesn't get wet.  But I see that Marie posted a site where you can by waterproof covers.  I am only getting a total of six treatments so it won't be in to long.

    Laura,  Glad to see you had a great time in Mexico...I was so jelous of you...I love Mexico.  Or any place warm and sandy.. we are thinking of doing some kind of Mexican trip when I am done with this crazy cancer trip..I can't wait.

    Juannelle,  I think you would look great in scarves.  You have a face that can carry that off.  I on the other hand look like Johney Depp in in drag...not a pretty sight, trust me.

    I hope eeryone has a great day...

    Michele

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited November 2009

    Dear JoJo,

    We also got Bush behind us :-)

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  • MarieK
    MarieK Member Posts: 911
    edited November 2009

    Hi All!

    I hope that everyone is having a good day or at least moving towards having a better day!

    Sido - Today I was hit with the heavy fatigue too - it's been coming for days but today WHAM!  I'm so tired that I just want to lie down.  What's that about?  I'm on day #16 post 2nd TX and did Neupogen day #3-10.  I feel like I've been ripped off - this should be my good week before my next TX on Monday.

    Enjoyful - My PICC line is flushed and the dressing changed weekly.  I go to the local Ambulatory Clinic near my home rather than have the nurse come to me.  It's easier for me this way and I can run errands while I"m out.  I did post a link to a swim-cap-like cover for the PICC line from Dry Corp (a US company in NC).  I couldn't find the plastic covers that Michele uses and I was getting tired of taping plastic every time I showered.  It took me 20 minutes to tape and 5 minutes in the shower and I still got it wet!  With this vacuum sealed sleeve it only takes me a couple of minutes to put it on and I can take longer in the shower!

    Well I should go have a cup of coffee and get my laundry done or have a nap!

    Marie

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  • MarieK
    MarieK Member Posts: 911
    edited November 2009

    MaryNY - thanks for the compiment on my wig.  This is the one I wear the most and it is the most $$  I paid $650 for that wig (my ins will reimburse $500) and it is synthetic and real hair mixed with a microfilament hand tied top (just means it looks more like hairs coming out of your scalp).

    Lanieo - I think you will really like your underhair wig.  I love mine and only wish that I could find a full wig like it.  I didn't use my own hair but did order the real hair version and picked out the colour (Dark Brunette) with highlights (Light Brown).  It so real looking and feeling and when I wear it with a beanie cap (small knitted toque) it makes me look hip and young! 

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  • azdiva
    azdiva Member Posts: 201
    edited November 2009

    Hey Marie - 

    You are my techie buddy here.  HAHA  How did you insert your wig pics into your post?  I have some Mexico pics in iPhoto, and I'm trying to shrink them and drag them into the post (with the little Insert pic widget in the tool bar), but I am only getting a link, not a picture.

    And I think you would look hip and young no matter what you have on your head!!

    Laura 

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  • MarieK
    MarieK Member Posts: 911
    edited November 2009

    Laura I do not know how to use the iPhone to insert photos. 

    I have a blog for my crafts and what I do is upload the photo to that blog as a post (but do not publish the post).  Once it is uploaded to my blog post (without publishing) I can right click to COPY it and then right click to PASTE into the post here.

    I think others who have photo sharing accounts do it this way too but I'm not sure. 

    The point I'm trying to make is that once it is on the internet (even in a unpublished blog post) you can copy it to anywhere.

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  • MarieK
    MarieK Member Posts: 911
    edited November 2009

    Just wondering about a few things here and thought I'd ask the group in case there are others wondering too or maybe someone who knows the answers....

    1.  My onc told me at the start that I "might" need Radiation.  He said we'll wait and see how the chemo goes.  I took this to mean at the end of chemo I might get Radiation but my husband says he understood to mean that I would get Radiation as well as chemo (concurrently) if needed.  At what point is that decision made?  Should I ask at my next onc appt on Monday Nov 16?

    2.  I have not had any tests done since starting chemo besides my pre-chemo blood work.  How do I know if the chemo is working?  Is anyone having tests done to determine if the chemo is working?  If so, what tests?

    Thanks for any input or insight you might have on this....

    Marie

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited November 2009

    Marie,

    With a 5cm tumor the NCCN clinical guidelines say you need Radiation even after Mastectomy.

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited November 2009

    Marie,

    It sounds bad but there is really NO test to say whether chemo is working.

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  • azdiva
    azdiva Member Posts: 201
    edited November 2009

    Marie - 

    I had EXACTLY the same questions at my last treatment.  My BS had said I "might" need radiation because I had close margins (but they were clear).  I was very worried about this because of the reconstruction and because the tumor was in my left breast on the inside center (worried because of heart damage, etc.).  I had no positive nodes, but BS only took 2, so who knows?

    My Onc was pretty adamant that I would not need rads because I had the mastectomy.  Evidently my BS took the fascia off the muscle (which I guess is good because the cancer doesn't usually cross it?) and my tumor was more toward the skin side.  If there were anything left in the breast area, it would be felt almost immediately.  He said he would talk to her (the BS) to straighten it out.

    I would guess that they will take a look at your axilla (MRI or PET) to see if you have any enlarged nodes after  treatment.  I don't think you would get rads at the same time as chemo.

    About the other tests - I asked my onc how he would check to see if the chemo was working.  Amazingly enough he said that they don't usually do that during chemo!  Evidently the tumor markers can be thrown off or yield unreliable results while you are on chemo.  He also told me that unless I was symptomatic, they don't usually do an MRI or PET because early detection doesn't matter as much with recurrence or metastasis.  Which I thought was pretty calloused because I took it to mean - Hey, you would be Stage IV so it wouldn't help with your ultimate outcome.  I wasn't that offended at the time. And I probably got it wrong, because he is a really good doctor.

    I know I can't get an MRI while I have these tissue expanders, but I am going to INSIST on something about 3 months after I finish chemo.  I know my BS didn't want to do any diagnostic tests other than the biopsy before my surgery, but I faxed her a letter saying I wanted to know IMMEDIATELY if my cancer had spread because I was trying to coordinate 2 busy surgeons for my mastectomy.  I would not have waited for my PS if it had spread.  Next thing you know, I had my MRI, a PET scan, and the new PEM scan.  No spread.  My insurance covered it and I wanted it (I put that in the letter).

    If you want to get an MRI or PET and your doctor says it isn't necessary, just send him a letter.  They are afraid of getting sued and will order the tests!!  (I know that's bad, but I am the kind of person who HAS to know.  Whether its good for me or not.) 

    Hope that helps!  And I will try the picture thing again.  It cannot be that hard!  Somehow I got the avatar pic there!!  HAHA

    Laura 

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  • MarieK
    MarieK Member Posts: 911
    edited November 2009

    Thanks Onty & Laura for your replies.

    Onty I think it is the size of my tumour that is making the onc suggest radiation.  I thought at first my tumour was only 3.5 cm but that was only what was taken out during the initial frozen section biopsy.  After my mastectomy the breast tissue remaining still had 2.3 cm of tumour left so the two were added together for total 5.8 cm mass.

    I will still ask my onc about it as well as checking to see if the chemo is working & let you all know what he says.

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited November 2009

    If you had 2.3cm tumor left after mastectomy and then you got chemo, the best test would be the shrinkage of the tumor.

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  • Scoobydoo
    Scoobydoo Member Posts: 499
    edited November 2009

    I already know I am getting rads.  But I had a lumpectomy so there was no decision.  My tumor was on my left side as well.

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  • MarieK
    MarieK Member Posts: 911
    edited November 2009

    Sorry Onty I meant to say that the breast tissue removed had a 2.3 cm mass still in it.  I have NOTHING left in my body (as far as I know) and the surgeon was very aggressive in getting clear margins!

    Scoobydoo have you already seen a Rad Onc?  When will you start your Rads?  Did you get recon or will you get recon at some point?

    I'm worried aobut my heart and also the limitations for recon.  I haven't decided what I want to do yet or even if I want recon but I hate to think that a door might be closed because of my treatment.

    I've read (on here) that if you have Rads then your choices for recon are very limited.  I am meeting with my BS on Nov 30 to get a referral to a PS.  I think that I will get more than 1 opinion and also the options of what I can get with or without Rads.

    Thanks for input ladies!

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  • Scoobydoo
    Scoobydoo Member Posts: 499
    edited November 2009

    Hi Marie.

    No I have not seen a RAD Onc, but my onc told me I would definitely need rads.  I didnt need reconstruction because all I had was a lumpectomy.  It is underneath my breast so you really can not even tell I had surgery on my breast.  They are only slightly different from each other.  I had very clear margins, but to be safe they still want me to do rads after I finish chemo tx.

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  • one-L
    one-L Member Posts: 1,110
    edited November 2009

    Michele, I don't think you would look bad in a scarf.  I got some that are already tied and they are so comfortable and look really good.  My hair is finally coming out by the hand fulls now and I guess I will need to take the duct tape to it.  I am just not looking forward to it.

    Jo Jo, you make it sound so good, I wish I could come and visit you.  I am sure you are beautiful with you head buzzed.  We all are in our own way.  My grandson was over today, he is 5, and I took my wig off and he just looked at me and said, "Well, you don't have to get your hair cut any more, that will be nice".  What a dear he is.

    The elemetary school here has a family walk night on Tuesday evenings and I took my grandson and I walked abour the track 6 times and my grandson went around 8 times.  He should sleep good tonight.  It is a really good program.

    Juannelle

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited November 2009

    Dear MarieK,

    I guess I don't understand the adding of the tumor size to biopsy sample size. Can you please explain?

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  • lainieo
    lainieo Member Posts: 53
    edited November 2009

    The secretary at my school sent me this today. I thought it would be a good thing to share.

    If you know any woman currently undergoing Chemo, please pass the word
    that there is a cleaning service that provides FREE housecleaning - 1
    time per month for 4 months while she is in treatment.

    All she has to do is sign up and have her doctor fax a note confirming
    the treatment. Cleaning for a Reason will have a participating maid
    service in her zip code area arrange for the service.

    http://www.cleaningforareason.org/

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  • snuziq
    snuziq Member Posts: 107
    edited November 2009

    Scoobydoo- I think the reason you will be getting RADs is because you are triple negative.  I, too, am triple negative and was told because of that I would need both chemo and radiation.  I believe it's the standard treatment for our diagnosis.

    Jojo  - I'm going to think of your beach next time I need a mental vacation.  It sounds beautiful!

    Onty -   Love the "Bush" behind us comment!

    For those considering scarves, I wear one pretty much every day.   As I live in Texas, I have to consider the temperature both outside and in my office as it sometimes get warm.  My advice is find a pretty one with colors that you wear often.  That way you won't need as many.  Also, the satin type scarfs slide so having a bit of stubble helps.  I found some material I liked and made a few before my awesome coworkers gifted me with several.  If you are worried about tying them there are several Internet sites that have directions.

     Well, I've only worked 10 hours today and I have about 12 more hours of work to catch up on so I am going to sign off for a bit.  :) After that I am gearing up for treatment #3 tomorrow and my first dose of Abraxane.  Here's hoping for NO allergic reaction!  

    I wish everyone well...

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited November 2009

    Dear SuziQ,

    Glad you like the bush comment :-) It was a rare brilliant thought in the chemo fog. 

    By the way, I am told by doctors that there is no medical relationship between the decision to radiate and TNBC. They only said "You always need radiation with lumpectomy. You may also need radiation with mastectomy, eg if tumor >=5cm, if >=4 nodes were involved, if the margins were not clear with mastectomy etc." Did I miss something?

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  • one-L
    one-L Member Posts: 1,110
    edited November 2009

    I am with Snuziq on the scarves, I have two wigs, but I went over board on buying scarves and I really like wearing them.  Some are already tied and some I tie, it is really very easy and they are very elegant.  I also live  in Texas and some days can still be pretty warm this time of year and the scarves are cooler.  Now right now I am in the middle of my stubble falling out, so today my wig hurt my head because my scalp is sensitive.

    There are many web sites that you can buy nice scarves for not very much.  Also, Ross and places like that have really nice scarves for less than $10.00.

    Getting ready for TX 2 on Friday, I will be half done, woohoo.

    Juannelle

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited November 2009

    Good luck for a gentle #2 1L.

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  • MaryNY
    MaryNY Member Posts: 1,584
    edited November 2009

    I had my second treatment today. So now I'm halfway there.

    My understanding regarding radiation is the same as Onty's.

    If you had a lumpectomy, you will need radiation. As my BS says it's a non-negotiable package deal.

    Some women have a mastectomy so they won't have to go through radiation. However, if you had a mastectomy and there was lymph node involvement, then you will still need radiation. Also, if the BS did not get clear margins (presumably with tumors close to chest wall) then you will also need radiation.

    Had a good belly laugh at the "Bush behind us" comment too. At first I thought it had something to do with pubes, then I reread Jo Jo's post for context. I will think of Jo Jo's beach the next time I need some mental relaxation and I'll think of the Bush behind us when I feel myself getting too high on the ol' steroids.

    I met with a radiation oncologist last week. He does tomotherapy. I've been looking for advice from those currently undergoing radiation or those finished on how they decided on tomotherapy vs. conventional radiation, if they had a choice.

    Good luck to those going for TX tomorrow (Wednesday)—Snuziq (TC #3) for sure. Also possibly Hollycan?? (TC #2), ReneeJean??, Suzi45?? 

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  • snuziq
    snuziq Member Posts: 107
    edited November 2009

    Okay, maybe it was the chemo that was because of the TNBC....I just remember them saying that I had to have chemo and radiation because of the kind of cancer I have, but it the radiation could be because of the lumpectomy.

     Dang it Jim, I'm a programmer not a doctor!  Wink

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited November 2009

    Suzi, that sounds more like the explanation I have heard. Don't blame yourself for making a poor career choice :-) 

    PS: I am a programmer too. 

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  • joanneasiata
    joanneasiata Member Posts: 719
    edited November 2009

    HI beauties

    hey i am having a blonde AND  a chemo moment her ,can someone please fill me in on the joke about' BUSH BEHIND US '????? its gone straight over the top of my head Undecided

    .

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  • Scoobydoo
    Scoobydoo Member Posts: 499
    edited November 2009

    Joanne I thought the same thing but was too embarrassed to ask.  Can someone please explain the joke...we want to laugh too.

    Snuziq - you made me laugh with the star trek line.  Ha.  That was great.  Are you a treky?  Yeah I think its more because I had a lumpectomy. 

    Mary - with is tomotherapy.  Please explain.  Since I know I will be having rads any info you can share is greatly appreciated.

    Well tomorrow is my big day with the T.  Ladies I am so nervous.  I dont want neuropathy.  I will be painting my nails black today.

    Anita

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited November 2009

    George Bush is behind us.

    That was in reply to Jo's "bush behind her house".



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  • snuziq
    snuziq Member Posts: 107
    edited November 2009

    Scoobydoo- yes, I will have to admit I am a Trekkie.  I watched the original series in reruns as a kid and really loved the Next Generation series.  In fact, my husband, is/was a Klingon; he did the whole dress up thing and even won some batlith tournaments.  Right now, I am trying very hard not to buy the newest movie on DVD before Christmas since it is on the list of things I gave my family!  Oh, what a geek I am.  

    Everyone have a great day.  I am off to chemo # 3.

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  • MaryNY
    MaryNY Member Posts: 1,584
    edited November 2009

    Snuzik: Best of luck today. After this one, you'll be halfway.

    Anita: See tomotherapy. However, even after reading that and meeting with a radiation onc who uses this technique, I still want to know more. I started a thread on IMRT/Tomotherapy vs. conventional radiation treatment. I'm hoping to get some responses there to help me toward the right decision. Tomotherapy is not that widely available yet, so it may not be an option for you close to where you live. Since we will be going five days a week for radiation, travel time becomes more important than it is for chemotherapy. 

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