Starting chemo Thursday, May 31 - June Group?

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  • mom24boyzs
    mom24boyzs Member Posts: 53
    edited June 2012

    Marcia & Steelersluver, hoping your second treatments went well today and you experience minimal se!!



    Cmom & Ellen,we will be having chemo tomorrow, your first my second. Sending good vibes your way and praying you have minimal se!



    Doris, I think it's funny that you put in your order for red and curly hair!! Love it! I got my hair cut yesterday into a pixie, just because I didn't think I could handle buzzing it all off yet. And it was coming out by the handfull!



    Maa764, we have the same treatment cycle and drugs, except you had your surgery first and I will have surgery after I am finished with my chemo. Almost the same diagnosis too! Hang in there with those se. Praying they subside for you soon!! I had just a little nausea with some strong heartburn(no one warned me about that se) , but the worst se was the diarrhea on days 5-10. Now those were bad. Hang in there!



    Had my port placed today it it went very well. Not a lot of pain, just some discomfort. More like when you have a pulled or strained muscle.



    Prayers for everyone! Blessings,

    Rhonda



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  • steelersluver
    steelersluver Member Posts: 112
    edited June 2012

    Thanks mom24boyzs.  It was actually my first one and I did fine.  I'm exhausted largely because I also got the port put in today, so it was a 10-hour day.  The port is a little more sore than I expected, but I got through having it inserted w/o the sedative without too much difficulty.

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  • KeepMoving
    KeepMoving Member Posts: 112
    edited June 2012

    There are so many new posts that I can't keep up. 

    Good Luck to everyone going for their 2nd TX.  I'm right behind you on Monday.  Let's prove my nurse wrong and not have more bad days after each TX.  She mentioned the cumulative effect today, but I'll try to keep her comment out of my mind.  She depresses me.

    Also, good luck everyone with wig issues, chemo issues, rx issues, picc line issues, and port issues.  I know it's just too much sometimes.   Hang in there everybody!

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  • Marcia1111
    Marcia1111 Member Posts: 368
    edited June 2012

    Pam -

    OMG!  I just rambled on to you in a private message and totally missed what you're going through.  I am so sorry to hear this! I was also told that if I was BRAC positive I would have to have my ovaries removed.  I am quite a bit older than you, so I was okay with the possibility.  Not thrilled, but okay.   I think you said you have 2 children. Thank God.  My husband just told me about someone he knows who had BC at 35 and had never had kids.  The chemo made her infertile and she is 55 now and still dealing with the loss she feels over never having had children.  I guess my point is, we have to count our blessings because we can  always someone who has it worse than we do.  My heart goes out to you.  If you feel like talking, send me your phone number in a private message and I will call you.

    Marcia

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  • pamelahope
    pamelahope Member Posts: 534
    edited June 2012

    Marcia,

    Don't worry...so much to keep track of. I don't mind. I am slowly adjusting. Just like the initial shock of diagnosis I have to keep expanding my mind to take in more!

    Keepmoving, Good attitude to not listen to the nurse who said side effects are cummulative. I don't feel it yet. Maybe the emotions wear one down but I noticed Infusion 2 is better than one. You prove that nurse wrong!

    Steelersluv, You did it! You got the port installed without sedation. Did you feel it? Or was lidocaine enough?

    Rhonda, Good luck with chemo tomorrow. I have a feeling we will all be there in spirit with you.

    Everyone, I am not sure what I would do without this group. So thank you!

    Pam

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  • Marcia1111
    Marcia1111 Member Posts: 368
    edited June 2012

    Pam -

    I know what you mean.  At dx, my doctor wanted me to have lumpectomy and radiation. I elected to have BMX, thinking that would be it - no radiation, just surgery.  What a shock to find out that it was in my lymph nodes and I have to have chemo AND radiation!  The dx of BC was such a shock and I totally relate to what you mean about having to expand my mind to take in more.

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  • steelersluver
    steelersluver Member Posts: 112
    edited June 2012

    Thanks Pam, They actually did give me an option of light sedation when I got there, but cautioned that it may be a bad idea to go right from there to chemo if it upset my stomach...that was enough to sway me to just do it.  The lidocain shots were uncomfortable, but not awful.  Amy time I felt more pinching, he put more lidocain in it, so it was managable, even for a wimp like me. The worst part was that my colarbone area is thin, and he had difficulty getting a suitabile place to put it without it sticking out far...lot of pushing and pulling. It was a little more sore than I expected after, but nothing completely over the edge.  Chemo was uneventful.  Peeing red is interesting!  I have mouth ulcers going into it from going off my lupus meds, so they gave me a script right off the bat for the magic swizzle stuff I've read about.  I've got a headache, and a mild upset stomach, but being tired is the worst of it now.  The kicker was learing they found 2 nodules on my lungs.  They are under 1 cm each, and I have a history of pneumonia, so they advise re-checking in 3 months and they think they are most likely not cancer.  I'm not sure I'm comfortable with that, but since I'm already started with the chemo not, there is probably not much option.  There was also a cyst on my ovary, and my uterus was enlarged.  They are doing an U/S there, and I'm already scheduled for the BRCA on Tueday.

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  • cmomof4
    cmomof4 Member Posts: 24
    edited June 2012

    Got through the first chemo day, now the fatigue is setting in.  I was nauseated earlier but the meds are taking the edge off.  I just can't shake the annoying headache. I'm scared of being in pain from that Neulasta injection tomorrow...

    Pam, I believe you and I are on the same thinners (Coumadin and Lovenox inj) - that stinks about your port.  When are they doing your PICC?

    Thanks to everyone for their kind and supportive words, it really does help!

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  • Ellendou
    Ellendou Member Posts: 139
    edited June 2012

    Heading out the door real soo, have an hour drive to the clinic.....sending love and good wishes to you all today.  Not doing too well this morning, can't seem to shut off the waterworks.

    Hugs 

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  • pamelahope
    pamelahope Member Posts: 534
    edited June 2012

    Marcia,

    I need rads too. I have one positive lymph node, UGH! My radiation place is incredible supportive. They know how scared most people are of it. They closely monitor you. They equated it to sunburn. Out off all the treatments, I find that the most scary. The girl told me the fatigue is less than the chemo fatigue. One thing at a time. Breast cancer treatment is brutal, yet, I know how lucky we are to have it.

    Tammie, Yes, lidocaine is not bad at all. I am turning into a big fan of it. I wish I could get my port removed with just lidocaine, instead of twilight. You said you are peeing red, make sure you dilute that with plenty of water. A/ C the nurse said is hard on the kidneys. My pre had a red tinge too it. Everyone is different with these affects.

    I am noticing so much overlap here with our medical conditions. I have lupus anticoagulant and you lupus. I was under the impression that chemo would put it into remission. You know, the way some people with lupus take the chemo drug that starts with an m. I hope that happens to you. The remission.

    Cmom, are you taking zofran? That causes headaches. Hang in there with the fatigue. Don't feel bad about sleeping through the worst of it, if you can. Shortens the duration of how long you are awake with bad side effects. The neulasta shot does not cause me pain. I take zyrtec the day of the shot and five days. Backtracking....if zofran causes you headaches do Emend next time. I take a pill an hour before infusion, and one pill the next day and one pill the next day. So much better and less constipation. TMI!

    When do you check your INR to see if you should still take Coumadin and Lovenox. Lovenox is just a bridge until you get your INR between 2 and 3. Once it is good, they will have you stop Lovenox.

    I am stopping by Coumadin today and bridging with Arixtra. Similar to Lovenox but only once a day. Does not cause the mild gastrointestinal side effects like Lovenox. I get my port removed on Tuesday and a PICc line on Wednesday. Does that mean I will have an iv and tubes outside my arm. Plus, being bald with a wig!!! Will the humiliation never end! Not sure how I continue to leave the house!!!

    Anyway, everybody hang in there. Next year at this time all this stuff will be in the past. Pam

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  • cmomof4
    cmomof4 Member Posts: 24
    edited June 2012
    Pam, they did tell me when I'm between 2-3 I can stop the Lovenox injections; I was at 1.3 the other day.  I will be SO glad to have to stop giving myself shots every twelve hours!  Plus (not that anyone sees it but...) my belly is black and blue.  I believe with the PICC line you will have the tubes inside and outside.  I saw several patients at the treatment center and they didn't seem the least bit bothered by them.  I guess you just get used to it, I don't know though.  Let me know how that goes for you.  When they did your BRCA test, is it just a mouth swab or a blood test?
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  • steelersluver
    steelersluver Member Posts: 112
    edited June 2012

    I got rid of the red tint by the end of the day, and in a way it was helpful to see the evidence of progress toward getting the drugs out of me.  I'm glad I do not have the anticoagulant factor to worry about.  I just have to go off my plaquenil for 10 days before any procedure because it makes me bleed heavy.  The nurses did mention that the chemo and the steroids should help with the lupus/sjogrens, so I guess that's good news.  I do not have to take the neulesta this round.  They'll see where I am next week to decide if I have to do it next time.  My insurance won't ship it to my house it appears, so I think I have to go all the way back in for it (an hour drive each way), or try to work somwething out at another cancer center somewhere.

    Good luck with the PIC line Pam, I'm not sure how it workd, but I think you have more limitations on getting it wet/swimming than the port. It's got to be better than trashing your veins though! 

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  • StephanieJM
    StephanieJM Member Posts: 78
    edited June 2012

    steelersluver-  Do check with your  treatment center to see if they can call a hospital near you to get it.  We live on the Oregon coast and drive 2 hours to Portland for my treatments, they called a local hospital clinic and I went there for the shot the next day.  The nurse did the arrangements and it went very smoothly, ask.... you cannot be the first person in your area where this has come up.  I am so impressed with how hard everyone works to make this easier for us. 

    God bless your day!!

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  • steelersluver
    steelersluver Member Posts: 112
    edited June 2012

    Thanks StephanieJM- I just arranged to get my levels checked (via port) at a hospital within 30 minutes.  It took some calling around, but i could do it through their cancer center, so hopefully I can get the neulesta there also if I have to have it.  I'm hoping to keep the counts up enough to avoid it. I wondered if that was something the Visiting Nurses could possibly do also.

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  • StephanieJM
    StephanieJM Member Posts: 78
    edited June 2012

    I have not been on for a few days, just catching up on all the comments .......

    reading about your concerns with appearances I remembered an experience our daughter's friend told me.  She is a beautician and had cancer a few years ago.  It was a hot summer day, she drove into a shopping center was sitting there bald, started crying.  A van pulled up next to her, this guy with no legs got out in his wheel chair by himself, big smile on his face, waved at her and wheeled off to the store.  She said she wiped the tears, grabbed her wig off the seat, plopped it on her heaad and headed in!!    Isn't that a great story!!  I know God sent that man to be a blessing to her even in his handicap (although he diddn't seem to feel it was a handicap) 

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  • StephanieJM
    StephanieJM Member Posts: 78
    edited June 2012

    steelersluver-  Also, regarding the neulasta shot,  I received a statement from my insurance yesterday, and there was a charge for around $7500. on it, at first I thought that had to be the surgery or something major but when I looked at the date it was the neulasta!!!  Someone had told me they were $2500, and I thought that was horrific.  So I hate to think but sometimes it's the money.... your clinic an hour away would probably LOVE that extra business.... not that it is all profit, of course but certainly could be a factor.  Just thinkin'

    I'm not clear about the neulasta injection as I have only had one treatment, I thought it sounded like I would just automatically have one each treatment, and was curious if it was for the a/c or taxol also.  So these are questionss I need to ask next week. 

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  • Marcia1111
    Marcia1111 Member Posts: 368
    edited June 2012

    StephanieJM - What a great story!  It puts it all in perspective, doesn't it?

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  • havingfaith
    havingfaith Member Posts: 93
    edited June 2012

    Stephanie - Thanks for the story, it is amazing how God sends people to us just when we need them.

    Well I'v been in bed all morning, I just couldn't keep my eyes open today. I had to call and cancel work.  You ladies are going through so much and Pam I am sorry about everything you are going through.  I don't think that I have been tested for BRAC.( not sure what that is.) And I hide my picc line with an ace bandage wrap. It camouflages it pretty good. I hope it helps.

    Tammie - I'll be praying that those nodules turn out to be nothing.  I was told that my CAT scan showed that I have some spots in my stomach that they will check in 2 or 3 months. Will this ever end.Yell

    Ellen- hang in there, I had the water works this morning also.

    I'm so glad I have all of you here!!  Ill respond more when my head is clear.  I know you all are going through a lot.

    Hugs out to ALL

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  • KeepMoving
    KeepMoving Member Posts: 112
    edited June 2012

    Steelersluv - the port went ok.  They gave me something called Versed and all I remember is chatting with the nurses for about a minute after they wheeled me into the surgical suite.  Next thing I knew, I was eating a snack of soda and crackers and ready to go home.  You deserve applause for doing it with just lidocaine!!!

    StephanieJM - thanks for the story.  That was great.

    A/C - they said it can cause bladder problems, too.  I didn't know about the kidneys, but that makes sense.

    Marcia1111 - You're right about the eyebrows.  My own sister did that with the tweezing and has no eyebrows.  Funny I didn't think of that.  I'm not worried about them anymore.  I figure that's the least of my worries.  Guess it takes my attention off the real issue for a little while.

    Pamelahope -- I'm so glad that you're feeling better after your second treatment.  It's about time something went good for you.  This situation is bad, but it seems as if you're always thrown something extra.  And, you're encouraging me?  Thank you.

    Hope everyone has a great night.  I'm going to try to do as much as possible before Monday.  I'm trying not to dread it too much. 

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  • StephanieJM
    StephanieJM Member Posts: 78
    edited June 2012

    Thinking about eyebrows, you know someday you could have them permanently colored if you needed to.  Mine got thinner as I got older and I had them very, lightly colored,  I'm not that glitzy.  Who'd have thought I'd be going through this some day.... SO at least I have the eyebrow problem covered!!! LOL

    It was so funny when I had them done, I am not familiar at all with the tatoo process and didn't realize there is slight scabbing and the dye is very, dark for a few days (they should definitely have told me), anyway I had volunteered to speak at this public group, it was a couple of days later and they were WAY over the top dark!!  I am sure people who don't know me are still wondering who that weird woman was with the EYEBROWS...... LILY MUNSTER, possibly.  How did they keep from laughing!!

    Good night everyone.  Sweet dreams.  God bless you. 

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  • SLKsMom
    SLKsMom Member Posts: 22
    edited June 2012

    Hi everyone. . .



    I'm new to this thread. Wanted to ask if any of you have experienced migraines from treatment? If so, did you find it was the Neulasta that caused it?



    I'm on 4 AC every 2 weeks, followed by 4 taxol every 2 weeks. Have had 2 of the Ac's - the third is this coming Thursday.

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  • StephanieJM
    StephanieJM Member Posts: 78
    edited June 2012

    Welcome SLKsMom,

    We are on the same program.  I have #2 Tues,  6/26.   I had a slight headache the first week, and I am not at all prone to have headaches.  I am sure someone will answer your question in the morning.  Think a lot of the group is on the east coast. 

    Besure you let your medical team know ASAP, mine has quickly addressed every concern I have had.   Good night.

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  • LongIslandMama52
    LongIslandMama52 Member Posts: 13
    edited June 2012

    Hi, starting Chemo June 29 Taxotere and Carboplatin with a kicker of herceptin.  Monday I have to go have a port put in.  Not thrilled about that, but I have lousy veins.  I'm very nervous about the port surgery, want to be "put-out" but they said it's a local.  I dont want to know about anything they're doing to me.  The nurses also informed me about shots I need to have each time after chemo, plus the fact that while chemo is once every 3 weeks, I also have to go for herceptor each week inbetween chemo treatments.  I'm trying to schedule the chemo of Fridays so I have the weekend to recover.  I can take time off from work, but I also drive my husband (he can't drive due to vision problems) and he can't miss much more time from work.  Got myself a wig yesterday, (thanks to my local coalition since insurance doesn't pay for it).... and am just trying to get my head into all the side effects that are yet to be experienced.   I'm worried about the fatigue, nausea, weight gain, hair loss, but if I come out of this completely cancer free then all of that is secondary. 

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  • KeepMoving
    KeepMoving Member Posts: 112
    edited June 2012

    StephanieJM  I never thought of that.  Don't laugh, but I'm going to check into the tatoo thing tomorrow.  Funny story.  LOL  Thanks.

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  • KeepMoving
    KeepMoving Member Posts: 112
    edited June 2012

    Hi SLKsMom  I think there are earlier posts on this thread from some of the others that were experiencing headaches from Zofran.  There are a lot of posts, but maybe if you check back a little, you'll find them.  I'm sure someone else will have better info for you tomorrow, but that's all I remember now.

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  • KeepMoving
    KeepMoving Member Posts: 112
    edited June 2012

    Hi Longislandmama52  - I got the port Weds., and they gave me Versed.  They called it local, too.  I don't remember a thing about the surgery.  They said the medicine does that.  I think they call it conscious sedation.  Don't worry.  After they gave me the Versed, it seemed like the whole thing took two minutes.  I'm serious.  You won't know anything they're doing to you.  They said it's the same thing they give people for colonoscopies.  Let me know how it goes. 

    I'm not having the same chemo that you're going to have, so I can't comment on any of the side effects.  Good luck with everything.

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  • Marcia1111
    Marcia1111 Member Posts: 368
    edited June 2012

    I just looked at some info I received when my port was put in and see that I have a script for Vicadin.  I could have used that!  I had Versedwhen it was placed and felt no pain at all, but that evening and the next day  wre rough. After that, o pain at all!  I put Lidocaine on before my infusion and cover it with press and seal so it doesn't get on my clothes.  It totally works and I feel nothing when the nurse accesses it.

    My hair is fallling out fast and furiously. At this rate, my husband will not need to shave it, which is a good thing because I think he's more freaked out about it than I am.

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  • pamelahope
    pamelahope Member Posts: 534
    edited June 2012

    Hi all! I didn't post yesterday. Too drained and overwhelmed by having to get my port removed and a picc line installed, being braac 2 positive and thinking about life without estrogen as I will most likely choose to get my ovaries removed Plus being estrogen positive and needing hormone blockers too. I can only imagine the quality of life from that. On top of the chemo, mastectomy, radiation future. I also am sick of wearing my wigs but don't like the scarves. I was staying positive but this is all a lot for one person to take. Luckily everything else in my life is good. I am parenting from a bed though!

    Marcia, I am sorry about your hair. I think you said you bought a wig. What kind and color did you get and style? Or are you doing scarves? I did try on one that would look good on you!!!! I almost bought it but chose a more brown shade. That wig was my second choice! What a relief about your port.

    Keep moving, Thank you for your compliment. Good luck Monday. Is that your treatment day. It is like pregnancy nesting trying to get stuff done before treatment.

    Speaking of trying to get stuff done, embarrassing, but I am having trouble cleaning. I am very clean and before treatment we had Stanley Steemer here to clean the carpets and tiles. Since then I vacuumed once, have not mopped and all I can do is the dishwasher and laundry. I wipe the toilets down daily, and the bathroom sink. I have not cleaned the tubs, so embarrassing...I am thinking of using the cleaning service asssociated with the American Cancer Society. I never had anyone clean my house before besides me? Do you think they are honest and trustworthy? Anyone else having trouble? Anyone else thinking about this?

    Long Island mom, I am originally from Queens and have family in Long Island. I have a different chemo regimen. However, good news for you, I think, think...if I am correct your side effects will be less severe. I schedule chemo on Thursdays and it doesn't hit right away. Friday I am ok and I stay in bed Saturday and Sunday.

    Slk, your migraines are probably induced by zofran. Ask to switch to Emend. Emend is so much better anyway.

    Stephanie, you made me laugh with the eyebrow story. So glad they lightened up!!!

    Having faith, I didn't realize you had a picc line too. I feel squeamish about it. Can you shower with it?

    Steelersluv and Cmom, did not find you in this thread. Saying hello! My brain can't absorb anymore.

    We really have a great group here!

    Well, time to take a shower. I hope I don't come out bald! My buzz cut is hanging on. I am losing hair but no real bald patches yet. Horrifying to write this and have it be my new reality.

    Pam

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  • DorisMarie
    DorisMarie Member Posts: 129
    edited June 2012

    day 15 after chemo hair started dribbling out..had already cut it short..my usual style..now ir is more than a dribble..LOL..think it is about time for a way shorter cut..

    pam..you know there is a free service for house cleaning ? if you need link I'll hunt it up..not avalible in my area..wouldn't ya know..

    best wishes to all..Doris

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  • DorisMarie
    DorisMarie Member Posts: 129
    edited June 2012

    SLKsMOM...I have headaches..enuf to wake me up in the middle of the night..used to have migranes until I hit menapause..not such bad ones after that..i don't take the shots..or the meds that was mentioned..

    think we each react to the chemo in diff ways..got me a list to tell the doc next visit...but I'm thinking the headache is just my SE...

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