Starting Chemo July 2013

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  • Rambo50
    Rambo50 Member Posts: 140
    edited July 2013

    2bluestars,

    "Welcome" - though that sounds odd for something like this!  I know you'll find the support and camraderie you need here - tons of amazing "firecracker" warriors :)  I started your same treatment regimen today.

    Sweetheart,

    Glad you're seeing a cardio - yes, I've been reading about possible heart racing, etc. That's one of the things on my post-A/C checklist to CALL ASAP about!

    Dxat32,

    "Glad" (not) to see another teacher here :)  I've had so much water today I think I'm swimming!  I feel good and hope it will help.  My best to you for Friday - it felt great to get MY show on the road today!  I, too, am blogging - I'll "follow" yours, here's mine:  www.mymidlifemeaner.blogspot.com Yes, it's been therapeutic for me as well.

    Love to ALL you strong, beautiful women <3

    ~Lynn

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  • SweetheartinTX
    SweetheartinTX Member Posts: 58
    edited July 2013

    I am concerned but to be honest, my onc doesn't seem to be. He didn't even see me. He told his nurse to refer me to the cardiologist because he doesn't think it's a side effect of chemo. I am not sure how to take that. I can't lie, it aggravates me some that he didn't even have me come in so that he could evaluate my symptoms for himself.

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  • momx2
    momx2 Member Posts: 109
    edited July 2013

    Starting chemotherapy tomorrow, so scared . Port was put in yesterday so sore just glad they were able to put in my arm . Best of luck to you all . Wishing you all health XOXO

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  • soriya123
    soriya123 Member Posts: 662
    edited July 2013

    Hi sweetheart, I'm glad to hear from you. I hope everything turn out good with cadiologist. Hang in there!



    Momx2, that great you had your done already. This morning was my 1st chemo. IV hooked to vein on my wrist. Feel kind a sting sensation uncomfortable for 30 min olny. It was not btd as I thought it would be. You'll be fine, hang in there.



    Ladies, first chemo so far so good but will see tonight and next n next day. Praying for minimal SE. Hugs to all my lovely ladies here....

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  • soriya123
    soriya123 Member Posts: 662
    edited July 2013

    Ladies, what a different beween Glutamine and Cosamin DS. I told my husband to get me glutamine, he come home with Cosamin DS. I read online trying to compare thes 2 products, I am so confused. Thanks

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  • aaoaao
    aaoaao Member Posts: 593
    edited July 2013

    I usually go to Webmd.com when comparing medications.  I don't know if this will help you.

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  • Rambo50
    Rambo50 Member Posts: 140
    edited July 2013

    Momx2, prayers for your chemo tomorrow!!! I'm sure it will be just fine :). Like others have said, the waiting and unknown are the biggest fears!



    Sweetheart, I'm with you on your onco not checking you out, BUT, you might also read it as him knowing he didn't NEED to and feeling confident all will be well :):):). Hugs.



    'Night firecrackers!!! Well, maybe - I'm so wired right now (steroids???) that I might repost in another hour or two ;-)



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  • puppymama09
    puppymama09 Member Posts: 77
    edited July 2013

    JeriGrace,   We are chemo sisters, we will have to stay in touch!  

    I have been waiting 3 weeks to find out my oncotype score, which is 27, I have been really stressed because I felt that I really wanted chemo to get rid of any stray cells and I was really afraid my score my score would be low and I would always worry about not having chemo.  However, now that I actually am getting chemo, I am kinda freaked out.  I guess I really didn't think I would have to have it, I don't know, I am just having a hard time dealing with it now.  And it was scheduled so soon I feel like I have too much to do and not enough time to do it.  Plus, Friday I have an appt for genetic counseling for the BRCA gene,  Monday I have to go the surgeons office to sign a consent form to get a port put in, which I will be having done the following Monday.  Then Tuesday I have to go to chemo class, then Wednesday is first chemo.  The cancer center I go to is over an hour from my home, so I feel like my last few good days I'm just gonna be traveling back and forth to appts.  Anyway, I just didn't expect to feel so depressed about this whole thing.  

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  • JeriGrace
    JeriGrace Member Posts: 128
    edited July 2013

    Puppymama, I know what you mean about the waiting.  It drove me crazy!  The incision from my lymph node removal was very slow healing so my MO wouldn't start treatment until it was totally closed up.  Now I'm starting chemo on Monday and I feel like I need more time to get ready!  I hope you have some good music to listen to in your car or maybe an audiobook.  I also didn't think I would need chemo so it has taken me some time to adjust to the idea.  I was hoping my onco score would be either really low or really high so I would know for sure what to do, but instead it was 19.  But I don't want to have regrets and after following so many amazing women on these boards I know I can do 4 rounds of 3 weeks.  I have also learned from the posts that even after we start chemo we we still have some good days.  So don't feel like you have to cram eveything in this week.  One other thing I learned this week is to take people at their word when they say they want to help.  I asked a friend to go wig shopping with me and she was so happy to do something to be helpful.  Lean on your friends and family and remember the firecrackers will be here to support each other!

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  • soriya123
    soriya123 Member Posts: 662
    edited July 2013

    I forgot to ask my onco, if we suppose to use dental floss our teeth due too bleeding and infection? I can't imgagine not doing it. Thanks ladies!

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  • Nocompromises2013
    Nocompromises2013 Member Posts: 292
    edited July 2013

    Soriya. I am sure I read dental floss is a no no



    So lets get to WBCs ladies. His many of you have had them checked pre and post chemo?

    I am day 8. Of thinking I got the placebo bag of poison but NO. Even though my SEs have been few. I found out today my WBCs have been DECIMATED. I went from a healthy 5.5 to a staggering 0.2. Have another test on Saturday then I guess onc decides if I need neulasta. Anyone else want to share their white cell counts ?? And any actions taken ??

    :)

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  • soriya123
    soriya123 Member Posts: 662
    edited July 2013

    No dental floss, what about the foods that stuck between our teeth, what are we suppose to use for that? No floss, will be more bad teeth....:-(

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  • soriya123
    soriya123 Member Posts: 662
    edited July 2013

    Nocompromises, you kno how we suppose to take nausea medication on time, so at night time do you wake up to take it too. just wondering....cus right now I take my med on time and no nausea or vomitting yet, I was wondering if I have to wake up at night to take it just in case.

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  • Rambo50
    Rambo50 Member Posts: 140
    edited July 2013

    Well I'm up at 3:30am here in the states (EST), so thought I'd post some thoughts on dental floss, Neulasta, and nausea meds:



    Soriya, my paperwork said to avoid dental floss when WBCs are low, and otherwise go easy. I use a disposable pick with really soft bristles that I can control much better than floss - it's a product made by Gum.



    Nocompromises, I have to take a Neulasta shot regardless on each day #2. I'll let you know what my mid-point WBCs are, but today, day #1, they were 5.4



    About the nausea meds, I didn't take any today, well yesterday now ;-) b/c I got a ton (Emend and steroids) in my pre-meds for chemo. I was told to take Zofran days 2-4 on a schedule of 8am, 4pm, and 10pm, regardless of how I feel, then add the other med (starts with a 'p' and works like Compazine) in between the Zofran if necessary. She didn't say anything about nighttime, but I plan to set an alarm and do one at 3am if I feel the least bit queasy!!! I'll call in if I have nausea beyond day 4. I also bought some Sea Bands (acupressure for motion sickness and chemo) that I'll wear during the day - would have worn them to bed, but they're a bit tight for sleeping comfort - at least so far ;-). I also have some ginger gium to chew for mild nausea. Mind you, I've not used ANY of this so far, so I'll keep everyone posted as S/Es develop...



    Very mild S/Es so far, just a sinusy pressure, tingliness around my face and chest around bedtime (gone now), and the STUPID SLEEPLESSNESS!!! I'll have to nap tomorrow for sure!



    Love you ladies <3
    <br />

    G'night, again!



    ~Lynn

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  • Nocompromises2013
    Nocompromises2013 Member Posts: 292
    edited July 2013

    Yay. Go Rambo. Glad SEs not too bad yet

    Yes those pesky steroids do interrupt the sleep patterns. So your 3am is my 5pm :))))

    I was so focused on emptying my bladder from the cytoxan that night 1 I don't know if it was the steroids or my bladder emptying waking me

    Sounds like our starting WBCs were similar but if you have had a neulasta shot then the next readings will be pretty different. Fascinating ( that's the pharmacist in me).

    Rambos floss advice sounds logical to me

    Soriya re my nausea meds. They gave me kyril 2mg to take at 7am on day 2 and 3 and I never needed the breakthrough nausea meds so middle of the night wasn't an issue for me

    If you are awake take it if not be happy you are asleep think it is only the first 3 days really anyway the nighttime dex dose should cover you overnight

    WBC update post weekend



    Oh and my oestrogen levels looked perimenopausal anyway <100nmg
    <br />So bye bye ovary function ???



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  • jnprsn
    jnprsn Member Posts: 151
    edited July 2013

    Hi everyone. Port placement today.

    Third TE fill and Echocardiogram tomorrow.

    Chemo starts Monday. ACT plan: 4 doses of Andriamicin and Cytoxan given every 2 weeks for 2 months. As told the A and C are the hardest. Then 12 weekly doses of Taxol.

    Ordered wig Tuesday. Btw, I was told hair starts falling out on day 17 after chemo starts.

    Scared of every unknown. Trying to get through one day at a time.

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  • soriya123
    soriya123 Member Posts: 662
    edited July 2013

    Thank you Rambo and No compromises. My nurse told me I can take Zofran around 5pm yesterday so I did and I took another one around 11:30pm. Somehow last night I able to fall a sleep around 12am but I'm awake around 3:30am drink some water and snack on a few crackers, and of course trying to empty my bladder twice n rinse my mouth twice. Now 4:30am quite awake, can't seem to fall back to sleep.:-P

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  • soriya123
    soriya123 Member Posts: 662
    edited July 2013

    Jnprsn,



    Great at least you had that port out of the way. Yes the unknown is very scary for all of us, but you will get thru. We will get thru this together with our lovely ladies here. Let just take one step at time. t:-) (((hugs))

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  • m1970
    m1970 Member Posts: 337
    edited July 2013

    SweetheartinTX, have you ever had anxiety attacks? I would want to see the cardiologist too but sometimes they can't find a reason and say its just stress. I get frustrated when they give me those answers but I figure its better than the alternative of finding something wrong.



    Puppymama, yes this cancer business really is inconvienient. I think it might be sinking in that this is really happening. Hang in there. For me the anxiety of waiting for results or anticipating the effects of a treatment is often worse than the anticipated event.



    I'm a week past chemo and I believe the symptoms I'm experiencing are prednisone withdrawal and not chemo related. I was on prednisone for 2 months to reduce swelling in my optic nerve which was damaged during my mastectomy and DIEP. I tapered off but probably too quickly. I've had a headache all week and no energy. It's probably multiplied by the chemo and my body is having a hard time bouncing back. I could take more prednisone and taper more slowly but I want off of it and I'm trying to tough it out. I lost 5 lbs in one week. My face is still puffy. I just want to look and feel normal.

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  • Rambo50
    Rambo50 Member Posts: 140
    edited July 2013

    Marsha,  I'm just one day past chemo and MY face is puffy too - steroids???  Sorry you're not bouncing back quickly.  Scary that you're losing weight; are you eating?  I purchased some Ensure Clear yesterday and will add it if I don't have an appetite.

    Soriya, Too funny!!! I JUST read your post, AFTER I sent you a PM - similar night here ;-)  BUT, I'm feeling pretty good today!

    Update for those interested:

    • chemo #1 yesterday (A/C)
    • felt a little "off" yesterday afternoon and evening, but nothing terrible, and I was able to shop, do laundry, do a little work, and catch up with friends :)
    • Got to sleep around 11:30 but woke around 3:30 (truly this is nothing new for me), BUT had a difficult time resting after that - hubby gets up early and we had a rare conversation before he left for work :) -- He told be to settle down and be quiet!!! Must have still been "wired" (lol)
    • Got up 2x during the night to pee (made sure I wiped with a medicated, flushable wipe, took a gulp of H2O, and swished with my Biotene wash)
    • My sinusy headache got bad enough to take something around 4am - took some acetaminaphen and it improved quickly
    • Got up around 6:30 for the day - brushed teeth and swished, had my morning java, took my vitamins, did range of motion exercises, showered, fixed my special breakfast smoothie - this time with pureed asparagus added, and am good to go for the day!
    • I DO have some tingly sensations around my face and neck - if they get more noticeable I'll call - just minor right now :)

    AND - my MAJOR VICTORY for today:

    I was actually able to put on a regular shirt and am sporting my brand new bra with my new right-side "sister" in her pouch :)  I look and feel completely normal and am going to meet some former co-workers for lunch (of course I'll be bringing my own food!)

    Love and Hugs to ALL of you great gals,

    Lynn

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  • Mellie289
    Mellie289 Member Posts: 156
    edited July 2013

    I got calls this week for PET scan (this AM) and port placement next week but yesterday afternoon, I got a call telling me how much I would be responsible for the PET scan.

    $1075.54!!!!!

    I just about choked! Do I really need this test? I canceled this morning's appointment until I can talk to my oncologist. I've already had clear bone and CT scans and I only have 1/9 positive nodes. If I have a PET scan showing a tumor, wouldn't I need a second PET scan (and to shell out another $1075.54) when chemo is done to see if the tumor(s) are still there? Seems to me it would be better to do this post-treatment to make sure I'm all clear.

    My onc hasn't called me back. I actually left a message for her to call me Tuesday when I dropped off my tumor pathology slides and the Her2 FISH results. I kept my cell phone by my side all afternoon yesterday waiting. I'm not happy that I haven't gotten a resonse from her. I wanted to get the chemo ordered so I can maybe start next week, as well as discuss the port placement to change it to arm instead of chest... and now I need to talk about the PET scan! I was a stress ball yesterday afternoon when I got that call AND I found out from my PPO that the deductible isn't included in the maximum yearly out-of-pocket, so my maximum is $500 more than I thought PLUS all my $20 copays for office visits (now approaching $200). I feel like I'm getting mugged weekly with all these tests and procedures.

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  • SweetheartinTX
    SweetheartinTX Member Posts: 58
    edited July 2013

    Morning ladies. Well it's actually almost lunch time here but i am happy its another good day.



    Momx2- I hope you are doing well with your first chemo infusion today! ((Hugs))

    Soryia- I sure hope so too, Thanks!

    Rambo- That is a good way to look at it! Thanks

    Marsha- My one and only panic attack that i know i had for sure was 3 days after i was diagnosed. It was really strange, i didn't know what was wrong with me so my husband took me to the hospital and they told me i had an "upper respiratory infection". When i called my breast surgeon to tell him what happened and ask if he thought i should take the antibiotics they prescribed me... He said No, and that it definitley was not an URI and i had a panic attack. Well sure enough the next day, i felt fine. No trouble breathing, no rapid heart beat, nothing. I would have never guessed because i had never experienced a panic attack. And i hope too that its something small and there is nothing wrong with my heart.



    And to any of the new "firecrackers" , welcome. None of us want to be here but i am sure glad we can all be of support to each other.

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  • option
    option Member Posts: 19
    edited July 2013

    SweetheartinTX, I also experienced heart racing after the first treatment. It only lasts for a minute or so, so didn't mention it to my MO. 

    Week 2 definitely feels better than week 1. Hopefully getting even better before the 2nd treatment.

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  • 2bluestars
    2bluestars Member Posts: 89
    edited July 2013

    G' Morning Ladies.  Tomorrow is my big day, thanks for your detailed updates Rambo50, it's helping me a lot. 

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  • honeybunny96
    honeybunny96 Member Posts: 120
    edited July 2013

    Jnprsn, I'm on the same cycle as you. I had my first last Friday, July 12. I think I'm an odd one with how I'm feeling. I am extremely exhausted, brain fog and feel just ughh. I think I just have to get outside more into the fresh air. I actually felt drunk on Tuesday. Ughhh. I hope your reaction is better.



    Good luck to everyone starting their treatments, or having the next one.



    I'm hoping for a really nice slow weekend, so I can have a fantastic week next week. I'm still working, and love, just not liking the low energy.



    Love n light to all today.

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  • Mellie289
    Mellie289 Member Posts: 156
    edited July 2013

    Finally talked to my onc! She said the PET scan isn't necessary and she didn't realize insurance wouldn't cover it. She's going to order my TC and I'll see her next Tuesday - we'll proceed without a port.

    Momx2 - thinking of you today. Good luck! 

    2bluestars - good luck tomorrow in case I forget to say it later. My brain is in such a dither these days

    option - I'm glad to hear that week 2 is getting better. Looks like I'll be doing TC like you (6 cycles). Can you tell me what were the worst days? I might be able to pick which day of the week my chemo days will be and I want to make sure I'm doing well on my teaching days (Tuesday/Thursday).

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  • Rambo50
    Rambo50 Member Posts: 140
    edited July 2013

    SheilaB330, Did you start your chemo today?  Just checking on you :)

    Momx2, How about you?  Are you doing okay?

    Lana and 2bluestars, Prayers for your starts tomorrow - you'll both do GREAT!

    Mellie, Crazy that you're having to deal with such mundane issues as insurance and tests.  I didn't have scans prior to treatment either.  Onco said micro-metastices (sp?) were likely given my path report (extra-nodal activity and LVI), but that my treatment protocol was designed to knock out what might be there systemically.  We'll do scans post chemo to check.  Glad you finally got it resolved!  Enjoy your weekend before next Tuesday.  I'm like you, trying to figure out what might work best with my class schedule.  My dean is a doll and is trying to move students around to accommodate me :)  IF this first round is any indication, days #1 and #2 are good for me - and one of my known teaching days is Thursday as well!  Fingers are crossed that Monday might be a good one too!

    Honeybunny, Thinking about you and hoping you break through the fog and have some good days SOON!!!

    ~Lynn

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  • BabyRuth
    BabyRuth Member Posts: 264
    edited July 2013

    I am so confused. I was supposed to start my chemo today but when I got there my fish test results were not what the doctor was expecting. My results were HER2-. That means this is not a recurrence but a new primary cancer. That also means that I could not do the chemo treatment that had been approved for me. We are requesting a retest so everything is on hold until Aug 1st. I am so disappointed that everything keeps getting delayed. I am also getting really frustrated with all this confusion.

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  • Mellie289
    Mellie289 Member Posts: 156
    edited July 2013

    Sorry for your delay, BabyRuth! I know how tough that is. I should have started already but have been delayed by many things, one of which was waiting on FISH results too! Isn't it a good thing though that you're HER2-? My onc was talking about a year of chemo if my FISH came back HER2+ versus an 18 week protocol.

    Lynn - thanks for the feedback. I'm almost wondering if Wednesdays might be a good treatment day if the next day (Thursday teaching day) is likely to be a good one. I will discuss that with my MO on Tuesday. My SO wants to go snorkeling this weekend before I start. I've been putting it off because I'm nervous about going (never been before) but it's probably the strongest, most energetic weekend I'm going to have for a while now that I have full use of left arm back again (although not quite full strength) since my surgery.

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  • SweetheartinTX
    SweetheartinTX Member Posts: 58
    edited July 2013

    Option, My heart races every morning. It doesn't do it much during the day but i can count on it every morning when i wake up. I am not sure what is causing it but i hope it stops or they can figure out what is happening. I will keep you updated.



    BabyRuth, I am sorry to hear about all your delays. I know that it is frustrating.



    Mellie, Snorkeling sounds fun. I have never done that. Guess that should be something i add to my 'bucket list'. lol

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