December 2012 chemo group

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  • Bren58
    Bren58 Member Posts: 1,048
    edited November 2012

    MommyGoth - I have the same type of port as you do and also have my first tx tomorow. Took my first steroids this morning. Hope all goes well with you tomorrow.

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited November 2012

    skimommi,  My port has three bumps on it that I can feel thru the skin.  If your bumps do not look red or rashy, it could be bumps on the port.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2012

    Thanks elimar! I thought that may be the case, as it doesn't really look rashy.  Just odd.

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  • FriendGwen
    FriendGwen Member Posts: 177
    edited November 2012

    Skimommi - I am hoping to exercise through treatment as well. I have always done some kind of exercise but have kept an extra 15 pounds on me since having my babies. My babies are now 18 and almost 21 so that excuse is old! I do not want to add any more weight no matter what treatment I'm on! SO I have joined yet another gym and have met with a personal trainer in hopes that she can help me stay on track over these next six months. Keep me posted on how you're doing with exercise.

    Runnergirl - You diagnosis is a whole lot like mine. My MO gave me three options: ACT, a second one I can't remember, and Cytoxan/Taxotere. I chose the cytoxan/taxotere and will start on December 5th. My choice was just me following a gut feeling based primarily on what I had read on these boards but I can't say there is any right one for any of us. I think the one I chose may be a little easier on the heart and since I may have mitral valve prolapse (never confirmed) I went that direction. Keep researching and then follow your gut I suppose!

    MommyGoth - Am totally up for ideas on how to rock the bald and/or pixie look! On Friday I am having my plastic surgeon repair my piered ear where the hole was simply too big for my liking (I love that I can now say "my plastic surgeon... never would have anticipated that before BC). I had stopped wearing earrings years ago. Since I'm looking at rocking the bald head I decided earrings are imperative.

    KeetMom - That's so great that you are feeling good so far! I hope it keeps up. Keep us posted.

    I wondered around Target last night looking at their hats and was in a bit of a fog thinking Wait.. what?? How did I get here? Am I really picking out things to wear on my soon-to-be bald head? Ultimately I wasn't ready to commit yet and walked out without any head coverings. I think once I go to the Look Good Feel Better class next week I will be inspired to make some purchases. And perhaps I'll take my older daughter with me for some fashion advice. Day by day I am closer to treatment and hence reality but also to successfully getting through this journey! Have a great rest of the day ladies!

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  • Runnergirl2013
    Runnergirl2013 Member Posts: 83
    edited November 2012

    FRIENDGWEN....thanks for the reply...I have chosen TC and will start chemo on 12/4. I want to be aggressive as I can with it. Lets get each other through this ....I am glad that I have this board and you as my fellow warriors !!!!

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited November 2012

    Presuming "young" age is not a factor, have most of the early-staqe, low/mid grade, <4 nodes involved, ER+/PR+ women on here taken the Oncotype Dx test? 

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  • Runnergirl2013
    Runnergirl2013 Member Posts: 83
    edited November 2012

    I tried but my small.6 cm tumor was too small and thus the oncotype cam back inconclusive :(

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  • jenjenl
    jenjenl Member Posts: 948
    edited November 2012

    my doc just ordered this test, which I was pissed it wasn't sent off to the place right after pathology now have to wait two more weeks.  my tumor was .7mm so I will let you know if it comes back inconclusive or not.  Better not damn it...nothing I hate more than someone/thing wasting time or messing with my plan :)

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  • FriendGwen
    FriendGwen Member Posts: 177
    edited November 2012

    My MO didn't order the test for me because of the damn smidgen of cancer found in my lymph node.

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  • Runnergirl2013
    Runnergirl2013 Member Posts: 83
    edited November 2012

    Jenjenl....I wonder if you will get an oncotype score...my docs said they usually need .8 cm or greater for the oncotype score. Mine was only .6 and I couldn't get any results ugh

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited November 2012

    Runner... & jen..., My lump was 7mm and My Onco test went o.k..  Maybe size does matter, eh?  Heehee.

    FriendGwen, The Oncotype is now being used successfully on women with less than 4 nodes involved.  Are you under 50?  Did your doc show you the chemo benefits with something called Adjuvant Online?  Were you given any info. on how much benefit you would receive from doing chemo?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2012

    elimar, my first MO did the oncotype test. One has to be at a 25 or less in order to be eligible for the randomized selection of not taking chemo.  I was a 26. Crap!! Well, I have to admit a little relieved at the same time though.  I was super worried that if they said the Onco showed I possibly could get out of chemo I would always be looking over my shoulder at the shadows to follow.  ;) Same reason I opted for BMX rather than just the one side that had the tumor. Don't think I could live with making that decision of not taking the chemo on my own.

    FriendGwen, I am so discouraged right now with exercising! I was in great shape, but then came the BMX.  Was finally able to get back to doing a good 2 mile walk and then had the port placed.  Ugh!! Now I am feeling like I can get back into some cycling, but only have two weeks to get my motivation built back up. I like the idea of a PT to help stay on course though. It has been suggested that I not start with strength training until my range of motion is back. Double Ugh!!

    Have to say I am envious of you gals doing only TC and not the A. I was hoping to do a clinical trial to avoid the A, but the MO didn't have the trial open. She was adamant that standard of care for me was the tri-cocktail. Undecided

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  • Nanc620
    Nanc620 Member Posts: 38
    edited November 2012

    Hi to everyone,

    I went to my Feel Good Look Better class on Monday and it was fabulous.  Not only did I walk away with a nice bag of new make=up but I walked away knowing I can do this...the instructor was great.  She owns a shop that is solely for women with cancer.  She offers wigs, hats etc, make-up, bras etc.  I made an appointment for Friday and my daughter (22) is going with me.  I was prepared to rock the bald look with henna tattoos and Eryka Badu head scarves...and I will still do that but am I more open to the idea of a wig.  THey have so many options...even these half wigs that you can wear with a hat or scarf.

    Seeing my surgeon tomorrow and getting a referral to another onco.  I like the first one but his infusion center is the pits.  My daughter is coping by being my velcro girl...the ifrst place couldn't guarantee that she could be with me.  So we are also going to the hospital where I had the class to get a "tour" of the infusion center.  

    I wish you all well and look forward to chatting...

    Nanc

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  • chrisvel
    chrisvel Member Posts: 14
    edited November 2012

    Hello my dears,

    I am back from my first treatment and it went well so far. It was 3 hours FEC, no nausea or sickness, the nurse is very nice and the place is ok.

    I am at home now and plan on resting for a few hours but I hope to go for a walk in the evening. My best wishes to those of you who start today as well, hope you'll find it as easy as it was for me today!

    Chris

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  • FriendGwen
    FriendGwen Member Posts: 177
    edited November 2012

    Hi everyone!

    Elimar - Yes, my dr showed me the Adjuvant Online and by doing chemo, rads, and tamoxifen I'd reduce my chance of the cancer returning from 25% to less than 10%.

    Skimommy - I'm going to avoid upper body strengthening for a while. I'm going to ask my plastic surgeon about it tomorrow. I was good about not lifting anything more than 5 pounds for several weeks after surgery but am back to carrying groceries and laundry. I really miss the yoga class I was taking but that downward dog position would be way too hard! My game plan is to try and eat as healthy as possible since that's so more the main source of weight loss, but to use the exercise to release those endorphins and keep me feeling good during treatment. I know I'm not getting buff during these next six months but even just keeping things status quo willl be okay with me.

    Nanc - My LGFB class is Monday and I'm really looking forward to it. I love free stuff but also am looking forward to getting my appearance plan together!

    Chisvel - First treatment and you're feeling good! YES!!!! One down!!!

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited November 2012

    Question...People with a port:  Can you see the actual lump thru the skin?  Maybe mine is an ugly lump because I am thin?  When will it stop HURTING?

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  • keetmom
    keetmom Member Posts: 432
    edited November 2012

    Yes I too and very thin...and it is very noticable....and slowly a week later is not huring so much!

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  • beckstar18
    beckstar18 Member Posts: 253
    edited November 2012

    Skimommy, your port may have these 3 bumps which are there to help them know where to poke you:  http://4.bp.blogspot.com/_7DXzNlc1iME/TNorw02MtoI/AAAAAAAAA34/E2RjWMrOlOI/s1600/IMG_6797.JPG

    I can notice my port under the skin but others probably wouldn't unless they were looking and knew.  I'm not skinny though, I'm average to slightly overweight in build (size 12/14).

    Chemo class yesterday went well, lots of questions answered.  I'm ready to get started and just move forward, my first tx is next Tues.  I had a fill done on my tissue expanders this week, and one more small fill of 50cc next Monday.  Then I'll probably lay off anymore fills until after chemo is finished. 

    FriendGwen-I've done the SAME thing.  I've shopped instore and online for hats and scarves but just can't pull the trigger to actually BUY it.  I'll probably start losing my hair just before Christmas, according to my onco it's about the 2.5-3 week mark after 1st treatment.  I'm being stubborn and waiting ;)

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  • jenjenl
    jenjenl Member Posts: 948
    edited November 2012

    i'm skinny too, my port is a purple heart shaped with 3 bumps - they always want they to appear a certain way to know it's not moving around.  My port is noticable.  I can sleep on my side but sometimes it feels strange.  Hope that helps. 

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  • chrisvel
    chrisvel Member Posts: 14
    edited November 2012

    BTW is there anyone here (apart from me) who doesn't have a port?

    It was no problem today, the nurse found a vein on the first try but I was reading some posts in a german forum and now I'm starting to get a little scared that the next times could be different? Well maybe I should stick to my attitude that has served me well so far: one day at a time!

    About hair again: my best friend offered to shave my head nex week. Should I do it?

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  • Bren58
    Bren58 Member Posts: 1,048
    edited November 2012

    I too am thin and you can see the port bump and where the catheter goes into the jugular in my neck. 10 days post port and it is still bruised and sore.

    I was supposed to have first chemo today but after checking yesterdays chest xray on the punctured lung from last weeks port surgery, they decided to post pone chemo because the lung is not getting better. So another chest xray tomorrow and then they will decide if I will get chemo tomorrow or wait 2 weeks to let the lung heal.

    I did get to go thru all the chemo teach stuff as well as have a base line echo done. I also found out that the whole infusion process will take about 4 hours for all the chemo and pre meds.

    So more steroids tonight. We'll see what tomorrow brings.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2012

    Bren~I have a friend who's lung was collapsed during port placement. I wonder how often that happens?



    Chrisvel~I guess the port accesses veins that are larger. The chemo can basically ruin our veins over time, then if we have an emergency it's harder to find a good vein quickly.



    I know many people do choose NOT to have a port though. Whatever you choose, I pray it goes well for you.



    Blessings

    Paula

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2012

    I too can see the port.  Looks like the biggest misquito bite ever. Smile Mine though is on my arm.  So, luckily with sporting long sleeves through winter it won't be noticable.  If I have short sleeves on and raise my arms it is very noticeable.  Finally comfortable that the tiny bumps are suppose to be there.

    steiner18 are you sore after the expansions? Two weeks ago I was so sore I could've cried.  Today they did another 80cc and am starting to feel sore, but nowhere near last time. Last fill next week until I'm done with chemo. Then we have to over-expand the rad side and deflate the other until rads are over.

    Made an appointment for a wig fitting next weekend. Girls, this is our opportunity to rock some new looks, experiment and try the new styles we didnt' want to risk before. There is no choice at this point.  If we must lose it then let's abuse it instead of it abusing us! Tongue Out Think I will get one wig to match current cut/style, then I am cutting my hair pixie-like so the fallout isn't so tramatic . . . then comes the buzz. One of my bff's is buzzing with me. Just haven't decided whether we do it ourselves or have the hair dresser do it.  At that point does it matter much?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2012

    What do you think people's reactions would be if I showed up to chemo wearing a wonder women outfit? Laughing Just saw a pic of a women skiing in one of these.  Would definetly make for a different atmosphere . . . don't you think? Ok, that really isn't me, but it sure was a funny thought for a minute.

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  • FriendGwen
    FriendGwen Member Posts: 177
    edited November 2012

    I don't have a port. I intended to but then spoke with the oncology nurse who said it really was optional based on the chemo drugs I was getting. So I have decided to give it a try without a port. If it proves difficult I'll schedule the port surgery. This is all so new... Just taking it one step at a time and relying on intuition.

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  • Bren58
    Bren58 Member Posts: 1,048
    edited November 2012

    Apparently lung punctures are more common in small thin people. My nurse DIL who used to work in surgical intensive care says it happens more than you think with port procedures.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2012

    Bren~If lung punctures are more common in thin people, I don't have a thing to worry about. I've been accused of many things in my life, and called many names, but sadly, THIN isn't one of them!



    Skimommi~I'm with you. I have an appointment to get a Pixie cut next Thursday evening. I have long auburn hair, but I've always wanted bright red with blond streaks not highlights. I was set to do that once and this skinny young beautician convinced me that I was too old (53 at the time) to sport that style. Well, we only live once! If they have anything like that, I'm GOING FOR IT!!!



    Michelle~I do think attitude helps. Not when we're spewing at both ends or seeing our bald heads the first few times, but when you're out and about, do your best to put on a smile :>) I have a friend who sometimes has to answer her husbands business phone in her home (plumbing). She says if you smile while you're answering the phone it comes across in your voice.

    I get accused of having great strength through this too. I like that idea. I'm hoping that I can be an inspiration to anyone I know who may ever go through something like this.



    But right now Michelle, I'm just praying for you, that this will soon be just a vague memory.



    Blessings

    Paula

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  • Nanc620
    Nanc620 Member Posts: 38
    edited November 2012

    We are all strong warrior women!!

      I saw my surgeon today and it went well.  I have been worried about beginning chemo this month with the holiday.  My brother passed away in Feb.  His birthday is on Dec. 13th.  Growing up the official family holiday prep began on Dec. 15th so David could enjoy his birthday without Christmas hoopla...I continued that tradition with our family.  As it is the first holiday without him his daughter is coming home from Japan along with her husband, my nephew, his wife and new baby are comng in from Arizona...and we had planned on traveling down to VA to join them all.  I have been so concerned about how I would feel, would I be able to even go...I expressed my worries to my doctor especially given that I am triple negative and common treatment is to begin chemo with an 8 week period from initial surgery. My 8 week point is Dec. 22.  I needed to hear him say it was OK to begin the week between Christmas and New Year, or even wait until the first week of January.  My relief is palpable...of course it is beacuse the tumor was totally removed with clear margins and there was no node involvement.  Also I am an older woman with no markers for BRCA1 or 2.  I am going to take this gift and use it to prepare for what is next...I can squeeze in a few more volunteer Reiki visits to patients at the hospital, I can make lots of cookies for our local shelter and I can find my wig.

    Re: the ports.  I got mine at the time of my surgery since we knew I was trip neg.  I am not skinny by any means preferring to call myself a hefty honey.  I can feel it but have had not problems with pain (other than the post op stiffness).  It is very werid to think I have a foreign body in my body...but it sure fits the whole needle thing of which I am terrified of...my doc even gave me a scrip for numbing meds to use an hour before the infusion begins...I consider it a hug blessing!  For those of you struggling with that darn sticky tape residue...I used olive oil and it slid right off.  I also tried polish remover but I don't suggest that ;-)

    Blessings to us all...

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2012

    Nanc620~I feel a bit of kinship with you, besides being BC Warriors. I lost my younger sister, Nancy, in Feburary also, and her birthday was yesterday the 28th.



    I really struggled with getting that darned adhesive off from bandages with all my drains. I just scrubbed until it hurt, then the next day I'd scrub some more. I wish I'd known about olive oil then.



    Blessings

    Paula

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2012

    Girls~Thanks for sharing all your stories about port placement. I feel much better about that coming up on Tuesday, thanks to all of you.



    Blessings

    Paula

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