October 2013 Chemotherapy

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    LiLi - I agree absolutely, that was why I wrote the last line. We each need to be comfortable with what our medical professionals advise - and I am definitely not in a position to tell anyone what they should do. I am very glad that you do not require rads, it is one less thing to worry about! The rationale I provided for why rads might be used is for anyone who is being advised to have rads for TN, and might be wondering why, if they have had a mastectomy, when others are being told they do not need it. I always try to think about others who may be reading this information down the line too, and not posting, or are new to this site.

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  • SpiritBlessing
    SpiritBlessing Member Posts: 584
    edited October 2013


    Oh one last question...I am curious as to are all TNBC having mastectomies? I had a lumpectomy and was told by both the first MO and surgeon that because I had no other tumors in the breast that doing a lumpectomy was just as good as a mastectomy so of course I chose the lumpectomy.

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  • SpiritBlessing
    SpiritBlessing Member Posts: 584
    edited October 2013


    I was told I need to do Rads as well along with the chemo.

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  • wrenn
    wrenn Member Posts: 2,707
    edited October 2013


    Spiritblessing, I was told lumpectomy would have same outcome as MX but with MX I wouldn't need rads so I chose BMX. I am old and tired of huge breasts anyway so I wasn't hesitant. Recovery is worse though.

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  • LiLi1964
    LiLi1964 Member Posts: 331
    edited October 2013

    SpecialK - point well taken.  See there, a TN that needs rads......right after our postings. 

    By the way, how are you feeling?

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  • Pam358
    Pam358 Member Posts: 294
    edited October 2013


    image

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  • gia444
    gia444 Member Posts: 68
    edited October 2013


    SpiritBless,


    I had a lumpectomy but I will be doing rads early next year... I have TNBC

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    LiLi - Lol! Actually - I am in the same boat with you - having positive nodes can often signal the need for rads, and some will insist it is mandatory to at least have rads to the axilla, but because I had ALND both my BS and MO indicated (on two separate occasions - when I was grilling them, lol!) that I did not need it. I just went with a friend for her rads simulation and we were discussing this with her RO who expressed shock that I did not have rads in addition to ALND. I left that appointment thinking arrggghhh! This seems to be one of the most frustrating things for many of us - there are so many schools of thought! And treatment has to be tailored to the individual by their medical team - this is not a one size fits all deal by any means!


    Any patients, regardless of hormonal receptors or Her2 status, who have a lumpectomy will be encouraged to have rads. Encouraged is probably not a strong enough word - the exceptions seem to be some with small areas of DCIS, some elderly patients, or those who have co-morbidities that preclude radiation.

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  • Annecy
    Annecy Member Posts: 54
    edited October 2013


    Just checking in.... I love the cartoon Pam! Over the last 2 weeks since my first TX, I have experienced various SEs from steroids, zofram and Neupogen. I had few days that I almost felt "Normal" whatever our normal can be . For the past few days, I have been suffering from flu like symptoms (sinus, puffy eyes, dry/runny nose) I am not sure if it's related to allergies (time of the year in our area) or side effect from chemo????? I have been using the "Neti pot" (nasal cleansing) daily to help clear the nasal passages but still feeling stuffy.... not sure what to do. Never a dull moment with this darn disease.... sorry for venting ....

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  • JenSF
    JenSF Member Posts: 45
    edited October 2013


    Hi Nicole, sorry to learn about your flu like symptoms. Did you take flu shot yet? Check MO if you can still take it before your next tx. It's worth the protection. After my bone pain crisis on Day 6, time has been pretty calm in my end. I will keep the Neupogen shots for my future tx cos now I know Tyrenol will fix it. Plus I also asked my MO, she said Claritan 10mg (one hr before each shot) is okay too. My scalp is itchy and occasional headaches the last few days. MO said normal and common - esp I am now about 2 weeks out from my 1st tx. Nothing dramatic shedding yet. But I am quite emotionally prepared. I had been wearing hats in the house and walking out.....just to make sure my DH, daughter and family are used to it! Hope you will get some relief real soon! Love, Jen

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  • flowergirl1
    flowergirl1 Member Posts: 54
    edited October 2013

    SpiritBlessing I felt like I needed to tell you this.  I figure your treatment will be different than mine since I am HER2 positive but I still think there are some things that I could share.  I have a port and can't imagine not having it.  It makes it so easy.  I am on TCH and had my first treatment 3 weeks ago.  I was concerned also before my 1st treatment but I have to say that is was no where near as bad as I expected. The day of the treatment i felt absolutely normal.  One thing I think helped me greatly...my MO had me take my Zofran for nausea around the clock the first 3 days starting the night of the treatment whether I felt like I needed it or not and that is what I did.  Staying ahead of the nausea is key and it is easier to prevent it than trwat it.  I only felt nauseated once and I found then that I must eat something first thing when I get up in the morning. Drink lots of fluids.  I got dehydrated on day 6 or 7 because of diarrhea and I didn't realize that was what I was experiencing.  It felt like the flu.   They gave me fluids and Lomotil for the diarrhea and I felt better almost instantly.  That is why it is so important to tell your MO of any side effects you are having because there is usually something they can give you to make you feel better.  The Neulasta shot made my legs hurt on days 4 and 5 even with the Claritin and that was tough because I worked and I stand for 10 hours.  But I have to say, after the first week, I have felt great the last 2 weeks.  I go for my 2nd treatment on Thursday and I feel better prepared now because I know what to expect.  Losing my hair was the part I dreaded the most.  It started falling out slowly last Thursday and by Sunday it was coming out so much that I was actually relieved to shave it off and I never thought I would say that.   I just wanted to share my somewhat positive experience with you.  I won't say it is easy but it is not as awful as I had thought it would be.

    Travlmom I will be praying for you tomorrow as you go for your 2nd treatment.  Mine is Thursday.  One more down.  :)

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  • Doitagain
    Doitagain Member Posts: 2
    edited October 2013


    Hi, all! I'm new to breastcancerchoices.org. Just finished my fourth and last chemo. I had an IORT boost to the tumor bed (at the 10 o'clock position) during my lumpectomy. My problem is that the area around my nipple is red, sore, and the nipple is a yellow color. No drainage. My oncologist looked at it and said this happens sometimes after IORT and Chemo. I have googled my problem every way I can think of and can find no confirmation that this ever happens. Anyone here ever read anything similar?


    Five weeks of whole breast radiation are next for me.

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  • SpiritBlessing
    SpiritBlessing Member Posts: 584
    edited October 2013


    Hi Ladies,


    First of all Pam358, that is a hilarious cartoon...that is totally the image I have had after talking to so many women who have or are going through this. Good one thanks for sharing.


    Flowergirl - Thanks for your response to my questions and insight. I will be scheduling for the port to be inserted so that will be happening soon. I will be discussing the treatments more and planning the nausea meds to be on top of the list. I asked the MO today if he treats nausea like pain and he said absolutely...good answer. I like eating breakfast soon after I wake and I drink a lot of fluids lots of water and tea so fluids won't be a problem...as long as I don't have issues with drinking water like I have read some gals have had. I am glad to read that your experience with your treatments have not been to bad. I did notice that the chemo you have is different than what I am supposed to have. I am going to be on AC for 4 cycles over 2 months and then Taxol for 3 months. They are saying I will be having radiation as well. So God willing my SE's will not be so bad either...I am praying and have lots of people praying as well.


    Ladies, I wanted to know what are the steroids that are being given? Are they the nausea meds? Never been on steroids before...how do they make you feel exactly and are their SE on them?


    Also, would like to start a list of things to buy prior to treatment so I can be prepared as much as possible. Any help would be great so I can get that list going which I have a good start from posts I have read on this page.


    Hopefully you are all ok with me being on this board even thought I really don't start treatment until November.


    Thanks all...blessings and many prayers to all of you...

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  • SuckitBC
    SuckitBC Member Posts: 34
    edited October 2013


    Welcome newbies and good luck to those getting infusions this week. May your SE's be minimal!


    Thank you everyone who posted about TNBC, it's been the one area throughout my experience thus far that I am too afraid to research because it terrifies me. I appreciate any optimistic info.


    Lili-I will try the Benedryl, they did give it to me during my infusion and it gave me an instant wave of drowsiness, (which I haven't experienced since :)), so maybe it will work at night too. How are you feeling? Throwing up this weekend was unpleasant and unexpected. I had been reassured repeatedly that I wouldn't vomit from chemo because of the great antiemetics and yet there I was with my head in the toilet. Crossing my fingers your nausea subsides.


    Lgkde-sorry you're delayed. I was almost delayed for my 2nd treatment last week because my pulse was racing so they sent me to get an EKG and chest x-ray and told me I'd probably have to go to the ER etc. Anyway, after an hour I was cleared to get the infusion, but during that hour I was panicked about delaying. I was mentally prepared for chemo that day, I didn't want to push it back, it was frustrating (and of course made my heart race more), so I totally get what you must be feeling. And Wrenn-I'm always thinking of your delay!


    Pam-love the new do'! And I too really hate the insomnia from the steroids! I am going to call my MO tom. to find out about adjusting the dosage on them. SpecialK-I know there is a standard dose everyone gets, but do you know if adjustments can be made? And what is the main purpose for them with chemo?


    Milane-the port is painful, I named mine a**hole, but it does make the infusions easier and most days I don't notice it anymore, only the first week I got it.


    I hate the nose drips! Anyone know of any remedies or do I have to clip a box of tissues to my shirt for the next few months?


    Also, I know we are all in chemo mode now, but for those of us that had MX's and implants I wanted to discuss how that part of you is progressing. I mentioned before that I went direct to implants, no tissue expanders, which is uncommon so I don't know if this is specific to my case, but does anyone have the strange muscle flex feeling when they do certain movements? For example, opening my dryer is one of the hardest things for me, I feel like the whole implant/pectoral muscle moves when I do that. Or even opening a push down and turn pill bottle, or pumping hand soap. It is not pain, it just feels very unnatural and strange. Is this just me?


    Wishing everyone a pleasant Wednesday...

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  • relocatedtarheel
    relocatedtarheel Member Posts: 159
    edited October 2013


    hi all-I am better. My MO Called in some ambien so I slept for the first time in days. Made all the difference. I havr had 2 conversationd with my navigator about my bad reactions to my first treatment. She thinks we can make several adjustments to make it go much better for me.


    I'm TN and had one affected node. I will have rad d even though I had a BMX with great margins. I want to do it all and never look back.

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  • lgkgde13
    lgkgde13 Member Posts: 164
    edited October 2013


    Lisa, headmaster, Pam and suckitbc - All thanks for support about delay. I was mentally prepared for it andwoke up at 4am. Yeah I am over it now and will just enjoy the extra week of feeling good. It sucks though bc my mom was here and now we need to rearrange the schedule and I hate putting my family out. My daughter has off school on Tuesday and now need to arrange sitter for her since I will be in chmo chair :(. My MO said she thought my cells would be low bc I was complaining about mouth sore in back of throat and tongue. She said you typically don't see sores if counts are ok. I am doing ice chis during treatment. Hoping counts will be up next week.


    Now I can enjoy halloween with my girls without being worried about being sick. The downside is my last treatment will be on my 40th bday and the week of thanksgiving. It sucks, never thought I would be getting chemo as a bday present :(


    Head east- what is blood builder? I can't have Neulasta bc had allergic rxn to it first time that sent me to ER.


    Lisa, I have been taking probiotic max but non-refrigerated. My sis is chiropractor and they sell great supplements and that one and daily multivitamin were what they recommended. My MO cleared as well.


    Pam - hair looks great and love the sweatshirt. I need to get me ones of those!!!!


    Anyone have neutrophils go down to 300? Any special food precautions? Now I am paranoid about getting sick.

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  • wrenn
    wrenn Member Posts: 2,707
    edited October 2013


    Spiritblessing the steroids are for nausea as far as I know. I hear they can make you jittery.


    Pam, love the hair. You have a nicely shaped head. :-)


    Suckit, I have no implants and am almost 3 months post BMX and opening those push down pill bottles is still hard for me. There are some weird sensations with all of this.


    Relocated, Sorry about your vomiting. I would rather have pain than nausea. I am glad they are going to adjust things for you.


    lgkgde13 (have to keep looking back to get all those letters right) I am glad you get to do Halloween. It would be nice if schedules are made and kept. It is reassuring to see that it happens to lots of people on here in some way but frustrating to try to plan.


    Lisa I hope you were ok for work and that the day is going ok.


    I think of all of you women (and the newbies) every day and read the thread but often have nothing to add some days since things are the same here. I am kicking this cold with record speed.

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  • lgkgde13
    lgkgde13 Member Posts: 164
    edited October 2013


    thanks wren...yeah my tag name on this site is annoying lol. I was trying to be cute with initials and wished I picked something easier...is it too late to change it now? Lol


    You can just call me lg!!

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  • flowergirl1
    flowergirl1 Member Posts: 54
    edited October 2013


    SpiritBlessing....water tasted bad to me the first 2 weeks. Really bad is an understatement....it was awful. Tea was okay. SpecialK suggested Sprite mixed with fruit juice and that tasted good. And I have come to enjoy Gatorade. Coke tasted really good but probably wasn't the best thing for me but anything to get fluids in. As far as the steroids, I get Decadron the day before and the 2 days after and it is in my premeds before my infusion. I have read that it is for the nausea but I think it could also be for any reaction the chemo drugs cause since it is an anti-inflammatory drug. Some people have trouble sleeping while taking it. I did the night before my first infusion but that may be because I was nervous. I found that if I took the night dose early enough in the evening (around 5pm) then I could sleep fine. It caused me to have heartburn which I have never had and I am taking otc Omeprazole everyday now to prevent that and it has helped. It also caused me to have a rash on my face for a couple of days after my treatment but that went away. Here is a list from one of the boards that I went by to prepare before my first treatment:


    http://community.breastcancer.org/forum/69/topic/706846?page=28#idx_811


    I will add that prayer is the greatest thing that you can have in your arsenal to get through this. As you said, I have lots of people praying for me and I know that has helped tremendously. I hope all of this helps you.

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  • Headeast
    Headeast Member Posts: 619
    edited October 2013


    lgk, maybe we can call you legs? Lol! Regarding Blood Builder, somebody posted it. It is a vegetable supplement, iron, that doesn't hurt the stomach. I bought it on Amazon. My MO cleared it and I am taking it along with the soy free sugar free diary free...protein shake. I am adding a banana in it and L Glutamine that my MO cleared as well.


    I am lactose intolerant and had ulcers more than once so I am very careful in not adding stress to my stomach. So far so good.


    Pam, love your sweatshirt.


    Chemo on you birthday? Just think that is your birthday gift: it is giving you Life!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    suckit - all of us with implants have that weird flexing thing - your pectoral muscle is distorted because it has the implant behind it. Because you have no breast tissue in front of that implant, it has to be larger than a normal augmentation related implant to give enough size, so it distorts the pec muscle more than normal. When you flex the muscle it is just moving your skin rather than breast tissue so it is obvious. That does not go away, you just get used to it.


    lg - you are in a dilemma with the allergy to Neulasta, keeping your counts high enough may be an ongoing challenge. I would avoid too much that is raw or unpeeled in the way of food, so salad and sushi may not be in your future for a bit! FWIW I had Neulasta, it worked great for me so my WBC was high, and I got mouth sores galore! The ice worked for me as well as avoiding acidic foods. It was a bummer because Italian lemon soda tasted good to me but I just couldn't drink it - also avoided tomato things like spaghetti sauce.

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  • naiviv
    naiviv Member Posts: 535
    edited October 2013

    Hi everyone, finally getting over the nausea and the big D found me this am.  Throat and under tongue are feeling a little sore....Someone must of signed me up for the sampler package.... a little of everything........but, not complaining...I know it can be worse. Have Biotin wash and paste and using salt water. Otherwise aches ok today with 2 advil this am and still taking Claritin.

    Hopefully H alone on Friday, has no SE's and I can go back to work on Monday...

    Be well,

    Vivian

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  • VintageGal1111
    VintageGal1111 Member Posts: 705
    edited October 2013


    This forum & your posts are so important to me. Thank goodness we have this board & I am grateful.


    The chemo & Neulasta shot last week kept me down for several days. My biggest ongoing issue is still constipation. At this point I would welcome the Big D & 5 trips to the bathroom! Miralx, Colace, dates, prunes, fruits, fluids just aren't cutting it. Because I have the Rectocele (the prolapsed rectum so I have a kink & get impacted) makes it 10 x worse. I WILL NOT go to the ER for this again, no way, somehow I will get on top of this. (enema today ewh)


    I was so surprised how my SEs ended up so different than anticipated. I tend to get diarrhea so expected that. (none) and because I had morning/noon & night sickness through pregnancy I expected nauesa but that isn't an issue. Weird.


    I am prone to mouth sores & did get those! :>(

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  • Pam358
    Pam358 Member Posts: 294
    edited October 2013


    RelocatedTarHeel - glad you are feeling better


    LG - I like your new picture! I got the sweatshirt at warriorsinpink.ford.com


    Wrenn - thanks for the compliment. So glad you are kicking that cold to the curb !


    Vivian - I like your comment about signing up for the sampler package - it explains it so well.


    VintageGal - I sure hope the enema works, that trip to the ER does not sound like it's worth repeating.

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  • SpiritBlessing
    SpiritBlessing Member Posts: 584
    edited October 2013


    Hi Ladies,


    Just checking in...have my ECO tomorrow at 10:00 and a PET at 1:15...day full of fun...YIPPEE!!! Still new to the abbreviations, what is the big D?


    Are you allowed to take Melatonin to help sleep while on tx?


    Flowergirl - I printed that shopping list so that will be a great start, thanks for that. I also printed someones list of things to pack for chemo day...very helpful.


    Waiting for a call for surgeon to schedule the port insertion...or install...hahaha, not sure which is correct terminology.


    I have to say that this board has been so helpful to me the past week that I think it is actually helping with my anxiety...so thank you all. I will see how it continues and let you know when we plan our first day of tx and see if I feel the same way...lol Loopy


    Sounds like it has been an ok day so far...well break is over so back to check in later tonight. Thank you all for being here for me,


    I am so glad I am part of your world as crazy as it seems...Winking

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  • Pam358
    Pam358 Member Posts: 294
    edited October 2013


    SpiritBlessing - the Big D is diarrhea :-(

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  • Furfriend2
    Furfriend2 Member Posts: 299
    edited October 2013


    Pam,


    LOL =D Love the comedy!


    My anxiety is building with infusion #3 around the corner. Gosh why can I not get past the constant queaziness? Wonder if it is something else? I have been eating pretty good this week & my weight is holding steady. How about everyone else? My emotions are all over the place & will be surpised if my period shows up this time around.


    Neulasta shots are/ are not given during Taxol infusions? I did not think to ask my MO just assumed I had to get them after every infusion. All the best to you awesome ladies here!


    Furfriend

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  • TeamKim
    TeamKim Member Posts: 568
    edited October 2013


    Off to Chemo #2 tomorrow afternoon. Seriously, I would be a basket case without you ladies. Thanks for being here.

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  • SpiritBlessing
    SpiritBlessing Member Posts: 584
    edited October 2013


    Hi Ladies,


    Pretty quiet on the board tonight. I just wanted to say hello before I hit the pillow. Ready for my ongoing test tomorrow the echo and the pet...joy!!!


    What are the nose drips from, which pill or which chemo?


    Relocate - I agree to not wanting to look back or do this all over again.


    On the probiotics, I was wondering if it mattered what kind to get. I normally get organic so they have one that is pretty good and strawberry flavored, is that ok to get? It is refrigerated as well.


    lg - What is the neutrophils at 300 mean? I am still new to all this but is this about the blood and what chemo is doing? What do they do for it?


    Headeast - protein shakes is a good option for protein so I am glad to hear they are allowed. There is one that has 35 grams of protein that is sold at Vitamin Shoppe so I bought one today to try it to see if it would be good to have on hand. What is Glutamine?


    I haven't seen much on juicing during tx, is there an issue with this?


    Good night ladies...chat tomorrow...prayers and blessings to all of you...

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  • SpiritBlessing
    SpiritBlessing Member Posts: 584
    edited October 2013


    TeamKim - Good luck tomorrow and I am praying you have an easy day and minimal to no SE's. Looking forward to how your next couple of days go.

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