December 2012 chemo group

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  • powermom
    powermom Member Posts: 195
    edited December 2012

    Yolanda - Welcome, glad you joined in!  My suggestions as far as your medical team and pathology reports, etc. are to a) have a list of specific questions (at least in your head) to ask your oncologist.  Actually, I got more detailed information from the Physician's Assistant at my last appointment than I got from the onco.  She had all the information on my pathology in the computer, and looked up several answers for me while I was in the exam room. b) read a lot yourself.  There is info on this site, I believe, about how to read pathology reports and what specific information to look for.

    As for the scans, I did have an MRI, bone scan and pet scan.  I wonder if your insurance  could be part of the issue.  I know that they had to get approval before they ordered any of the tests.  I would keep asking until you get the answers you think are appropriate.  I think getting a second opinion is a great idea if you are not comfortable with your present team.  I didn't feel I needed to do that myself, but it's important to feel good about the folks who will be with you on this long road.

    Hope this has helped some.  There are folks on here who are much more knowledgeable than I am, and who are farther down the road with this.  I'm sure they will chime in.

    Merry Christmas!

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

                                                                                            MERRY CHRISTMAS

                                                                                    

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  • ScarYola
    ScarYola Member Posts: 15
    edited December 2012

    Thanks Ladies,

    It feels so good to talk to adults and not only adults, but adult women who are in the same FUNKY, lol boat as meKiss I live in a city where I know no one!

    Runnergirl: I studied hard on the axillary node disection before I made a decision, had it been done during surgery the first time it would be what it would be, but to go back and do another surgery, after I still have two more to go with the Tissue expander replacement, no dice. I prayed and I believe I made the best choice for me. Thank you so much!!!

    Soteria: Thank you for the advice, I really want to make an informed decision and every little input helps!

    Ladies I went bald the day my hair feel out and went to the grocery store, this was a very interesting trip. I scared a little girl (lol), people stared, most stares were the quick look away stares. One lady walked up to me and said, you look absolutely beautiful, I needed that. I could not wait to get out of the store. I will do it again, but will probably be in Spring, bald is cold! I am wearing scarves even in the house. The pic I posted is my fave wig so far! I am going to do them all, every shape and color, I need to get some fun out of this! I am having a skate party (I live in Detroit, just moved here from Vegas, husbands job, can we say culture shock, anyway a story for another day). Having a WIG Out  skate party everyone has to come in with a wig. Gotta find some joy in this!

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  • ScarYola
    ScarYola Member Posts: 15
    edited December 2012

    elimar: Too cute!

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  • IFightLikeaWoman
    IFightLikeaWoman Member Posts: 27
    edited December 2012

    Hello Ladies,

    You are all so amazingly strong. I wish I felt as strong as you all. I am still having a rough time with all of this. I am just scared that the next treatment will be worse.

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  • MTJulie
    MTJulie Member Posts: 63
    edited December 2012

    Welcome, Yolanda. My mo didn't order any scans either, other than a chest X-ray. My breast surgeon was also confident with the info she got from blood work and said that all the testing doesn't add any more knowledge. So I am ok with that since we are doing chemo.

    So glad you are empowered by shaving your head. My hair started coming out yesterday and it is upsetting to me but it will probably be better once it's all gone.

    I am so thankful I found these boards. It is incredibly helpful and comforting to know all these women who are fighting the same battle. No one else can really understand like you all do.

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

    ScarYola,  Your outgoing nature is shining through.  You don't know anyone in Detroit yet, but you are having a WIG out party (great idea!) and people are going to come, so that's a start.  Meanwhile, you have found an online community where just about everyone understands what you are going through, so no need to go through this alone.  We are all helping each other get through this.

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  • Runnergirl2013
    Runnergirl2013 Member Posts: 83
    edited December 2012

    Scaryola- you go girl! You have a great attitude!  It's great you are on this board!

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  • mfml
    mfml Member Posts: 77
    edited December 2012

    Hello Ladies - lots of catching up to do here!  Just coming out of the fog from chemo 2.  A little bit of a strange Christmas - hubby and kids are FAR away with my family - I had to stay home.  Thank goodness for Skype!  I miss them all but I know this is for the best....  On the brightside for the kids  - santa can come here and there since I am here to let him in and leave the cookies and milk!

    This second treatment a little worse for me than the first - but same pattern - I guess that's no surprise.  All in all I guess I'm lucky on the SE's.  Headache still my main problem - I think I'm staying plenty hydrated - so I just try to take tylenol when the tummy feels up for it.  Now that I say it - I wonder if the headache is a SE of one of the anti-nausea meds - I'll have to ask.  Had my mastectomy/TE  on Nov 1 and I am STILL having trouble healing.  I have a scab in the middle of each side that somes off about  every week - leaving a big hole - then it scabs back over.  Anyone else have this problem?  PS says its not infected.  Maybe its just never gonna heal until I am done with this chemo?   I shaved my head after treatment 1 and now I have these tiny whiskers falling out just everywhere!  What a mess... they just stick to everything!  

    Anyway - you are all so amazing!  I  was starting to slip into a pity party here but I am regenerated after reading through all the recent posts.   A few new faces here since I last visited  - Hi Elimar and ScarYola and all other new comers!  I am wondering - will you all still post here in Jan or move over to the Jan chemo group?

    I hope all of you are feeling OK as can be and have a nice, peacful night.

    Mia

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

    Mia~I get a headache from the zophran given for nausea just before my treatment. I hear some other nausea meds cause headache as well. Thank God I only had one for about 3 hours. I hope it isn't worse this time.



    My hair started coming out yesterday, Day #17. You can clean those little hairs up with duct tape.



    Merry Christmas Girlfriends!



    Blessings

    Paula

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  • Tinah
    Tinah Member Posts: 11
    edited December 2012

    My hair started coming out last Friday, so tonight my DH shaved my head. Thanks to all you strong women it made it easier to handle.



    Merry Christmas to you all!



    Tina

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

    Welcome Yolanda! For better or for worse, in good times and in bad, we get it and are here for each other.

    Mia - I am sorry you are not with your family this Christmas, but glad Santa can come to both places for your kids :)

    I think we will probably all stay here on this board since we all started together, but feel free to check out other boards too based on what you are going through. There are a lot of wonderful ladies all through out these boards.

    On the hair issue, I buzzed mine at 2 weeks but it did not start coming out in earnest until yesterday (day 25 after tx1, day 6 after tx2).  I am still not completely bald yet. I have been doing the Brian Josephs eyebrow/eyelash gel to try to keep my brows and lashes. I will let you all know if it works.

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

    I want to wish all of you wonderful sisters a very Merry and Blessed Christmas.

    My wish for all of you is that you have an enjoyable guilt free day. We may not like the way we look right now, we may not feel great, our homes may not be decorated like they normally would be, and we may not have accomplished everything that we wanted to, but we are alive, we are stronger than we think, and we are fighting this disease! And that is something to celebrate!

    Merry Christmas everyone!

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  • Runnergirl2013
    Runnergirl2013 Member Posts: 83
    edited December 2012

    Thanks Bren58 for the well wishes - you have a great attitude and you say things so wonderfully!

    I go tomorrow for treatment too and am starting to get nervous and anxious...thanks for your wonderful words of encouragement.

    I am starting to get used to the shaven head.  I thought my four year old would have the hardest time with it but she embraces it by rubbing my head and kissing it and wearing my hats.  It's my 13 year old that has a hard time - he kind of just looks at me funny like he doesn't know what to make of all of this. 

    Any words of advice on what to say to my 13 year old son to get him more comfortable?

    Merry Christmas! Hugs to everyone - be strong as you can!

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  • FriendGwen
    FriendGwen Member Posts: 177
    edited December 2012

    Merry Christmas ladies! Got several pairs of earrings and a buff for Xmas all in preparation for what will soon be a bald head! Today there is still hair on my head which I am grateful as I just wanted it to hang on for Xmas. Tomorrow it's back to steroids for Thursday's round 2 infusion. Runnergirl - I will be thinking of you tomorrow.

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  • IFightLikeaWoman
    IFightLikeaWoman Member Posts: 27
    edited December 2012

    Merry Christmas to all who celebrate.

    Bren Thank You so much for the kind words.

    Runnergirl: I am glad that you are adjusting well to the shaved head. I hope I have as easy as a time with it as you. As for your 13 yr old, I am not sure of what advice to offer. He is probably still in shock, the hair loss may have made the cancer more real for him. Just let him know it will be rough but you are going to make it through!- I will be keeping you in mind as you go in for your next infusion!

    Friendgwen, Merry Christmas, happy to hear about your preps for the baldness. I too was lucky and recieved some head coverings for Christmas, and some bongos!!

    I go into tomorrow for my weekly herceptin and next week is my next big infusion, I feel so unprepared for it, but I will make it through. My goal in all of this is to grow old with my husband!

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  • LeeA
    LeeA Member Posts: 1,660
    edited December 2012

    Hi everyone!  Some of you I know from the Triple Positive thread, i.e. Steiner, Bren58, Powermom - some of you I feel like I've gotten to know since favoriting this thread about a week ago and reading your posts.

    My first "official" chemo is on January 2; however, I had my first Herceptin infusion on December  12, 2012 and I've had two vancomycin (intravenous antibiotic) treatments in the infusion room during the month of December so I feel like I've kind of had my "start" in December and would have definitely had a full start had I not gotten an infection in my right tissue expander.  In fact, my oncologist wanted to start chemo this week (last week of December) but his assistant said there was "no room at the inn" (her exact words) - plus, my first dose of Herceptin was so large (?) that in order to keep me on schedule with that they're starting me on January 2.  

    I'm far more nervous about this than I was before having surgery but reading all of your posts has been a great help!  

    My first Herceptin dose went well and without incident - just a little tiredness afterwards, a little bit of soreness in the area above the knees and a slight fever the next morning (very slight - and could have even been related to the infection issue versus Herceptin).  

    Yolanda, I would like to give that lady that walked up to you and said you looked beautiful a great big hug! What a wonderful way of reaching out - and I can relate to being in a city where you don't know anyone.  We've lived in the Los Angeles area for years but know very few people; however, I feel very blessed to have met one of our BCO sisters in person (since being diagnosed) and she is just great!  She's a triple-positive and we both share the same oncologist, in fact, it was because of her glowing description of him here at BCO that I set out to try to get into his practice, which had been closed for several years. 

    Wishing you all the best for the holidays and beyond!  

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

    Lee~Welcome aboard! I hung out on the November chemo thread all that month thinking I would start with them. I had already bonded with those great ladies, so when my chemo didn't start until Dec. 7, I decided to continue on there as well as on the December thread. I hope you'll continue here with us even if you do join the Jan thread, and you're right! You actually did start in Dec.



    I get my second treatment on Friday. I hope it's not worse than the first one. I had 3 days that were a bit rough.... Day 6 - depressed ( only one day ), Day 7-8 peed 400 times, had no sense of taste, and felt like I was freezing. By Day 9 I was back to normal. It would have helped if I had known, all my SEs were from steroids leaving my system.



    Merry Christmas



    Blessings

    Paula

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  • MTJulie
    MTJulie Member Posts: 63
    edited December 2012

    Merry Christmas to ll my December sisters! I wish you all a good day. My hair loss is right on schedule as today is day 14 and it's coming out a lot. I had hoped it might hang on till tomorrow but hair is everywhere. I also received some of the buffs. Mine are a different brand and a little cheaper than the buffs. Yowies? Very comfy and versatile and I am wearing mine just to contain the hair! My 3 children, daughter 28, daughter 25, and son 21, we're all home to witness this but they are all great, and funny. I did my crying and now I am over it. On to the next thing! Happy holidays to all. So grateful for all of you.

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  • beachlovingmom
    beachlovingmom Member Posts: 11
    edited December 2012

    Merry Christmas ladies! I am wondering if anyone has had a problem with a painful lymph node after chemo. I had my first AC on 12/14 and have had minor se so far: slight case of thrush, queasiness controlled with meds and slight fatigue. Today, I have some neuropathy in my feet but and now pain in the lymph node in my neck...the opposite side of my cancer but same side as my port. No fever but wondering if this is a common se or infection coming on.



    I had my head shaved on Friday as I was so afraid my hair would fall out on Christmas Day. I was pretty terrified of losing my long curly hair and wanted to control how it came out. The haircut/shave went well great...no tears, no drama...actually, a lot of laughter. I have two wigs that were expensive but not as comfortable as I'd hoped. Loving my official Survivor buff... we all love the show and my boys love it!



    Any info anyone can share with the painful lymph node would be great!



    Thanks ladies! Merry Christmas!!!

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

    Welcome Lee! I know from the Triple + group, that you have already been through a lot. Hopefully you will find support and encouragement here as you go through chemo too.

    Beach - if the thrush gets worse or you get mouth sores, have your MO call in a script for Magic Mouthwash -that really is the name of it - and it works wonders.

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

    Beachloving~I'm not certain about the lymph node. It could your body fighting infection,, or maybe that side is over compensating for the missing nodes on the other side.



    As for the thrush, I believe you can keep it away by doing a couple of things. I took an acidophilus every morning (refrigerate when opened) and ate a yogurt each day. My thought was, thrush is an over production of yeast, and if the A & yogurt keep me from getting a vaginal yeast infection when I'm on antibiotics, why wouldn't it work for chemo and mouth thrush.



    Rinse your mouth several times daily with 1TBS salt & 1 TBS baking soda in a quart of water. I brushed my teeth once a day with a fluoride toothpaste. The rest of the time I brushed or just rinsed with the mixture. I had absolutely NO mouth problems.



    I hope this works for you. I get my 2nd Adria/cytoxan this Friday.



    Blessings

    Paula

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  • beckstar18
    beckstar18 Member Posts: 253
    edited December 2012

    welcome Yolanda! I hope you find good info here and I appreciate your humor and attitude about losing your hair. I had CT and PET scans before my BMX and sentinel node (so before I knew if it had spread to lymph nodes). My Dr wanted the CT scan for sure but the PET scan was only if insurance would cover it, which mine did. My tumor was 1.5cm, Her2 positive, and I'm 32 so I think my scans were more or less to get a baseline for future reference if needed.



    Lee, good to see you here! I'm getting weekly Herceptin now (smaller dose) but will jump to th bigger dose every 3 weeks like you once my chemo is done. I get tired from the Herceptin so my MO is adding 250ml of IV saline on future infusions.



    Runnergirl, I'm right there with you tomorrow! I'm a little more nervous this time now that I know what to expect. I hope you and I both tolerate round 2 better!



    Anyone else going this week??

    oh yeah, Paula, thanks for posting the eyebrow link! I really liked her video on tying a head scarf with a ponytail holder, duh! so easy, why didn't I think of that?



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  • Runnergirl2013
    Runnergirl2013 Member Posts: 83
    edited December 2012

    Steiner18.....best wishes tomorrow!!! Let me know how it goes....if we didn't have an allergic reaction last time...does that guarantee the same for tomorrow? How many rounds of chemo do u have to do? I have four rounds!



    Mia ...hope you are hanging in there despite your family far away!!! Try to stay positive....how often do you go for chemo? Hugs to you



    Bren58....I am using a brow enhancer too maybe I should buy an eyelash enhancer too.... I hope it works...does anyone else know if it does?



    Beach loving...hope u are doing ok w the hair loss...stay brave!



    Lees...welcome...we are here for you and hope the board helps you!,,





    Friend Gwen...I will be thinking of you on Thursday...hugs. So is your hair falling out a lot? I shaved mine Saturday because I have thick hair and it was everywhere and I could not deal with the mess or seeing it fall out!



    Ifighlikea...I thank you for the well wishes and wish you the best....





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  • mfml
    mfml Member Posts: 77
    edited December 2012

    Hello friends - I hope everyone is feeling OK today.  I have a question about taking claritan for bone pain from Neulasta that maybe someone can help me with.  I have gotten different answers from nurse/doctors/PA when I ask how long I should take claritan to help with bone pain from Neulasta.  Rist t Tx:  a wednesday - neulasta injection Thursday - I took claritan from Wed of chemo up until the following Tuesday.  On that Wed - I had a HORRIBLE back ache... and legs hurt too.  I can't say for sure that this was from Neulasta - I may have hurt my back at work or something (I have had back problems off and on for years).  So - I had my last tx last Wed - Dec 19 - same thing - Neulasta the next day - been taking clariitan since last Wednesday.  I am wondering - should I take claritan tomorrow too?  The answers I have gotten range from 5-7 days - I am assuming from the neulasta injection?  Can any of you taking Neulasta let me know what your doc recommended?   

    I've really got to find something to do with my head!  I am so happy to hear that so many of you are finding something that works with your for head covering.  I am not having such luck!  I spent $$ on two nice wigs but they just aren't panning out - very uncomfortable and I feel "made up" in them or something - can't really explain.  I have a small head - maybe that is part of the problem.  Scarves and hats look very big on me. I guess I will keep trying things out.  I think I might be buying the wrong type/size of scarves - they all seem big and bulky on me.  Oh well - I will find my groove eventually I guess.

    I always know I can come here for a little pick-me-up and reality check when I start to feel a little down - you're all so brave.

    I hope you are all keeping well tonight - any advice on the claritin will be much appreciated!  

    M

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

    Mia~I loved this idea with head wraps made of t-shirts. Notice how much better this girl looks with the wrap compared to her wig. She keeps sticking her tongue out. I figure she has dry mouth from chemo.



    I've always heard take the Claritin the day before Neulasta and several days after. I guess do what works best for you.



    http://m.youtube.com/#/watch?v=tNOY4cS_k7A&desktop_uri=/watch?v=tNOY4cS_k7A

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  • mfml
    mfml Member Posts: 77
    edited December 2012

    Thanks Paula - I just spent some time watching videos on scarves - feeling better able to handle them now. - gonna give it a shot tomorrow!  I love the feel of the t-shirt wraps - just always run into problems when I started trying to weave a scarf around the top.  I will get this head thing - its my goal for the week!  

    Runnergirl - I am doing good here - I do miss my kids and husband terribly - but I'm happy they were able to see their cousins and grandparents and we will just have another Christmas when they get home.  I am counting the days to their return.

    I am doing my AC treatments every two weeks... just when I feel back to myself its time to do it all over again.  But - I have 2 under my belt now...  so half way done with the AC.  From what I here the weekly taxol should be a breeze after this.

    I hope you all have a peaceful, restful night tonight.

    M

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  • Nanc620
    Nanc620 Member Posts: 38
    edited December 2012

    JenJen, I am an almost 60 year old triple neg gal and we are going to beat this bugger down!!!  I know that all the internet makes it seem as if we are ticking time bombs...but we aren't.  I had a lumpectomy on 10/22 and will begin C/T on Jan. 9th (postponed due to some questions re: my final path reports).  I am here if you need a shoulder or a hand up.  THere are lots of women LOTS who have kicked trip neg and are living full and cancer free lives...let's joing that group, OK?  

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  • sophiafred78
    sophiafred78 Member Posts: 91
    edited December 2012

    I'm going for my 1st cycle of AC this Friday (Dec 28th), I couldn't stop thinking about it for one second when I was at my parents for christmas.

    I'm going to physical therapy again, today and tomorrow. I've had 4 sessions so far and it helped, but I still have pain and limited motion in my left arm from the axillary dissection. My arm is a bit swollen, probably from lymphedema Yell It's gonna be 4 weeks tomorrow from surgery, I didn't expect to still be in pain (arm and back). I'm so mad that the doctor got away with what he wanted, I never agreed with full dissection but ended up signing the papers for it. He says I'm to young (34) and needed it, I think I'm too young to be disabled, I need both arms to work.

    I'm also making a list of possible foods to take during chemo, like soup, yogurt, boiled eggs for protein, fruit (all I can think of that has a lot of water in it). My dentist prescribed a mouth wash and gel, told me to stay away from the bicarb solution.

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

    Thinking of you today - Runner, Steiner and anyone else going today. Hope your infusions go smoothly and without any complications.

    mfml -  maybe the wigs would work better if you had them thinned or trimmed. The one I got was so thick when I got it that I felt like I was wearing a huge ball of hair on my head! The woman that worked there was also a stylist, so she thinned it out and trimmed it a bit and now I feel much more comfortable in it. I still can't wear it all the time though, because it is not comfortable enough to wear more than 6 or 7 hoursat a time.

    Sophia - I am truly sorry about your LE problems. gentle (((hugs))) to you. I hope the PT will help you. LE is my biggest fear about having the ALND surgery and why I may have to reject my surgeons recommendation to have it done. I like how you put it - "I am too young to be disabled". I am 20 years older than you but feel the exact same way!

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