Starting Chemo May 2015

Options
1235741

Comments

  • Scarlett152
    Scarlett152 Member Posts: 175
    edited May 2015

    Hi ladies, I'm 24 hours post first TC and so far so good. A bit sleepy from meds and a long day of cold capping, but today has been good. Nurse practitioner in infusion center said to just keep alternating Zofran and compazine through weekend just in case. Took a short walk this morning, but have been laying low since. Kinda waiting for the other shoe to drop. Neulasta shot tomorrow morning, but I already have pretty bad joint and bone pain from 5 months of Zoladex, so hoping it won't be much worse.

    BCat61, I struggled with decision re chemo. Oncotype was 24, but general consensus was tumor size 3.6 cm and heterogeneity and my age (48) weighted in favor of chemo even though it would only slightly reduce my risk of recurrence. The best comment I got from one oncologist was that at this stage we have a lot of options for treatment. If there is metastasis, the options go down. That appealed to me, combined with the concurring opinions my MO got from MO's at three other cancer research hospitals. It's so hard to be in the oncotype intermediate range. Good luck with your decision. I feel for you!

  • Maree155
    Maree155 Member Posts: 20
    edited May 2015

    Shanann...today has been a good day Thanks

    StefLove...I was told the same I don't know why they bother to say this because the first thing people do is google it...I wonder what they would do? It is like you say we don't need follow up after chemo and radiation which is real good...I have been keeping busy and not thinking to hard on the chemo...I have brain fade big time at the mo...so that helps. lol

  • ComposMentis
    ComposMentis Member Posts: 12
    edited May 2015

    Hello to everyone who is part of this group. I will be joining in as well. I will have my first treatment (AC) on Monday, and after the AC protocol is complete, I will move on to 12 doses of Taxol, one per week. As potentially trying and difficult this treatment may be, I am eager to get started so that so that I can have moved through and past it.

    This weekend is being spent putting together all of the "chemo" supplies and organizational systems that seem prudent, based on experiences shared with me and from my own research.

    I hope we will be a supportive and successful group, tackling our treatments with strength, grace, and empathy for one another.

  • Shanann
    Shanann Member Posts: 106
    edited May 2015

    Welcome Composmentis! I have to ask, are you Catholic by any chance? I converted to the faith in the Jubilee year, and I'm just wondering- not that it is relevant to your post.... just an inkling. It's all grace. God is good. -Shan

  • tjh
    tjh Member Posts: 469
    edited May 2015

    I am spending the weekend with my children and grandchildren in the sunshine, loving every minute😄

  • Shanann
    Shanann Member Posts: 106
    edited May 2015

    Me too!! I slipped off down to the beach with my oldest son, and my grandchild before I begin my chemo! What a joy those little ones are.

  • ComposMentis
    ComposMentis Member Posts: 12
    edited May 2015

    Dear Shanann--thank you so much for the welcome. In response to your question, I was raised Roman Catholic and while I am not as active or grounded in the church and liturgy at this point in my life, the lessons and articles of faith will always be a part of me at some very basic and visceral level.

    I have been making lists this afternoon for my chemo bag, how to organize checklists to ensure that I do my pre-chemo meds and duties, putting together the last minute shopping list and trying not to chew my fingernails to the quick in anticipation...and some level of dread of the unknown.

    Best wishes to all who join us here!


  • klanders
    klanders Member Posts: 244
    edited May 2015

    I'm on Day 10 after first TC chemo. For me, the chemo part has only given me a weird tongue/bad taste in month - which I combat with spearmint gum. I took my anti-nausea pill for the first four days to dodge that bullet. I'm having to take a lot of colace because I'm very constipated. For me, I think almost all my problems were from the Neulasta shot and Mistletoe. Even though I took the claritin, about 36 hours after Neulasta I developed a fever and bad joint pains. My reaction was worse than normal because I also did the alternative medicine Mistletoe injection. Here's a summary of the past 10 days

    Day 0 - chemo day - went well.

    Day 1 - felt fine, just a little weird. Gargled with baking soda/salt water a lot because tongue and mouth were "off." Went for a walk, did all my normal daily stuff. Gave myself mistletoe at 3pm. Neulasta shot at 5pm. Taking claritin for bone aches.

    Day 2 - normal day. felt fine.

    Day 3 - not fine. developed a fever courtesy of neulasta and/or mistletoe. bad bone aches. went to ER about 10pm because fever was consistently at 101. All blood work came back great - no infection. Came home after just a few hours.

    Day 4 - fine. good, normal day. bone pain gone.

    Day 5- developed fever and horrible back pain. Still managed to go to son's band banquet which was pretty stupid with a fever but I didn't want to miss it! Called doc who told me that it was just neulasta fever/pain and take two Aleve and call her in AM. I'm happy to say, Aleve did the trick!!

    Day 6-9 - normal, good days. chew a lot of gum because of weird mouth taste. Evening of Day 9 finally gave myself another mistletoe (one week overdue but I was afraid).

    Day 10 - Today - good in morning but I've been told the mistletoe is supposed to make you feel like you have the flu. Sure enough... started to get really tired and took a nap this afternoon. Woke up with a fever. At least now I know the fever might totally be all mistletoe related and maybe not neulasta. It's supposed to be good that I feel this way because that means it's working. Hah. I might just finish my last two injections and be done. It's supposed to boost white blood cells just like neulasta so maybe I'll just stick to that. I'd rather not give myself a fever every three days!

    I enjoy reading through posts but does anyone know of or want to start a google "log" where we can each have a column and Day listed on the side and we can jot a note how we feel each day? We'd probably need a different spreadsheet for each treatment protocol so maybe that would get too complicated, but I wish I could just look at something that showed "here's what everyone else experienced on day 11" based on personal experiences. It would be easier to glance at than reading through the boards looking for things.

    - regarding eating on day of - I ate normally - and ate a lot during chemo. (the steroids made me hungry.) I had brought ritz crackers and peanut butter because I wanted protein. I also ate a bagel.

    - water - holy moly - I thought I was doing good drinking 32 oz the next day. I see I'm an underperformer so I'll have to step that up!

    - port - I have 4 treatments of TC so University of Michigan did not want to do a port. My IV was in my arm and I was able to move it around with no problem. I'm switching to West Michigan Cancer Center for my next three injections and they were really surprised that I didn't want a port, but the IV didn't hurt at all so I'd rather not add to my scar collection which is extensive after DIEP BMX and then lumpectomy.

    - I brought a complicated photo album project with me to chemo that I really was feeling driven to finish. I actually thought I got done with chemo too fast because I wasn't done with my project yet! I got sleepy for about 10 minutes when the benadryl went in but I fought it because I wanted/needed to get this project done.

    Oohh, this is way too long. But I wanted to help relieve some of the fears for you. I won't lie - day 3 was horrible for me. BUT, I honestly think it was self induced with that stupid mistletoe injection. You all are going to do GREAT this week!! You can do this!!

    Next injection for me is May 21.

    Kristin

  • mysunshine48
    mysunshine48 Member Posts: 1,480
    edited May 2015


    Happy Mother's D


    Happy Mother's Day to all! A lot of us start chemo this week! I am praying for us all to get through it just fine and have few side effects. FYI: IF you get mouth sores, CVS makes a "Magic Mouthwash" - it is by RX only. And, just so you know, they mix it at the pharmacy and, once mixed, it is only good for 14 days. So, if it works, we have to get another RX. My pharmacy has my RX on hold. IF I need it, I will call and ask them to mix it up. I also intend to have salt and soda by the sink in the bathroom.

    Trying to get all possible things ready for any SE. Thursday is my day. SCARED!!!!!

    But, gotta be strong and do it and get it behind me!

    Lynn

  • StefLove
    StefLove Member Posts: 322
    edited May 2015

    Tomorrow is my port day and it's freaking me out more than the chemo at the moment. :/ Also ran around a little bit today to try getting the last few odds and ends purchased. Next fun step left is hunting down dry ice for the cold caps I'll be trying.

    I've been trying to hit the 100oz of water today that my MO nurse demanded I drink during treatment and HOLY AMOUNT OF WATER! It's insane. I'm definitely the most hydrated I've ever been and I'm pretty sure my water bill is going to skyrocket the next few months with the amount of time I'm flushing the toilet. :)

    Glad you're feeling better klanders and that hopefully you've narrowed it down to the mistletoe. Hoping the next treatment won't be as 'eventful'! The google log sounds great and I'd contribute to it if it went live!

  • tjh
    tjh Member Posts: 469
    edited May 2015


    I am set for tomorrow, DD picked up for school 7:15, Lab at 8, Oncologist 9:00, chemo at 10. Nervous but not terrified, I just want to get started so I can be finished. My 13 yr. old DD is scared. She has slept with me the past 2 nights. She has a softball game tomorrow night so I have a friend staying with me while DH takes her to the game.

    Klanders, has your hair started to thin?

    Happy Mothers Day

  • CatsRus
    CatsRus Member Posts: 310
    edited May 2015

    Happy Mothers Day... Not looking forward to starting TC on Thursday but yet glad to get started and getting it done! Let's hope all goes well for those of us starting this week....and of course to all on this journey whichever wherever you are up too. I got my hair cut shorter this week and had a manicure and pedicure so I'm ready... I think....maybe not.... eek!!

  • Maree155
    Maree155 Member Posts: 20
    edited May 2015

    Well done Klanders...that was a great post...it is nice to see how it all is going for you :-)

    Good luck for Monday Composmenti...I start my first chemo on Wednesday.

    I am also scared Mysunshine4...but as you said it will be behind us soon :-)

  • ksusan
    ksusan Member Posts: 4,505
    edited May 2015

    Happy mother's day to the mom on this thread.

    I have my third TC on Thursday. Just like the surgery, the port, the echo, the PET, the blah, blah, blah, I found it has not as scary to do it as to anticipate it. Good luck to everyone who starts soon. Hydrate!

  • labhusky
    labhusky Member Posts: 177
    edited May 2015

    I had my 1st treatment Wednesday. Got to say that I've been tired this weekend. No energy but I'm listening to my body. I just rinsed my mouth out with salt and baking soda because sort of how it feels. It sure takes the fun out of eating! Plus a little tummy upset. I do want to lose weight tho. I wasn't sore from the 1st neurlasta shot so I'm hoping that continues. I go this week so they can check my white blood count. I think Thursday then the 2nd treatment is 5/27. I so want this done and over with. Feeling sorry for myself but I guess I'm lucky in that this is for insurance against it

  • tjh
    tjh Member Posts: 469
    edited May 2015

    Good luck to all of us starting this week. Let us know how you all feel and I will do the same. I have the my bag packed with IPad, book, coloring book and pencils. I will pack banana, tangerines, and crackers tomorrow and the water bottle. I am up to 80'ounces a day and only 6-8 trips to the bathroom. Lab husky.....you are so right about the insurance. We are sitting at $125,000+, luckily we only have to pay $3000. Cyber hugs all around:

  • Piscean
    Piscean Member Posts: 50
    edited May 2015

    Hi Jen,

    In answer to your question about sensation after mastectomy...yeah. It feels weird. Around the base of my tissue expander, there is sensation. I can feel the tissue expander rub against my rib cage. The bottom edge feels hard and it's firm where the injection port is. I had a areola sparing mastectomy (nipple is gone). The incision is small, about 3 inches. There is no sensation there, but the strangest thing happens. My areola skin (which is going to be used to reconstruct a "nipple" for me) responds just as the native breast. What I mean is, it puckers up just a tiny bit. Still, when I touch it, I cannot feel any sensation there.

    I was diagnosed with DCIS grade 3 by core biopsy and chose mastectomy. I am glad I did because I was one of the 30% with a concurrent invasive tumor. Now waiting for my MO appointment tomorrow to see my Oncotype Dx score and see whether or not chemo is in my future. I don't want this coming back and I wonder if I should just ask for chemo.

  • StefLove
    StefLove Member Posts: 322
    edited May 2015

    well just left the hospital after getting my port in! Luckily feel ok right now so I'm grabbing lunch with my father. I know I'll be sore later but no complaints just yet.

  • Magnolia83
    Magnolia83 Member Posts: 99
    edited May 2015

    Hi Gals! New here. Just had my first AC infusion on Thursday, May 7...doing dose-dense. So far so good (if you can call any of this good...yuck!)...have had manageable nausea, fatigue, and icky tasting mouth, but nothing terribly severe thus far. Have been balancing couch time with walks, laundry, grocery shopping...anything to keep me moving! Back at work today and aside from feeling tired I am hanging in there. I am 31 so I'm hoping age is on my side??? We'll see. Good luck to all who are starting soon...hydrate like crazy and stay on top of your meds like everyone says! And if you can tolerate exercise, do it...my mom went through chemo a few years ago for ovarian cancer and her worst side effect was constipation, and she said exercise (walking, etc) really helped with that.

  • tjh
    tjh Member Posts: 469
    edited May 2015

    I am about 1/2 way through first round, started at 8...definitely information overload. But feeling ok. DH went out to get me some lunch.

  • Moderators
    Moderators Member Posts: 25,912
    edited May 2015

    Welcome Magnolia to our community! Thanks for sharing your experience. We are routing for all of you!

  • ComposMentis
    ComposMentis Member Posts: 12
    edited May 2015

    Dear Group--I had my very first infusion today. I am starting with Dose Dense AC (dose every other week x 4 cycles). My husband accompanied me and while we had been to "chemo class" we still were not sure what to expect. First order of business was check in, go to the correct waiting room (the infusion waiting room, not general), meet nurse, get weighed and height measured again (to confirm to calibrate our doses properly). Our nurse then gave me the big comfy chair (scrawny little metal chair in corner for husband :-)...

    My port was installed on Thursday, and I was favoring it a bit, not sure I had smeared enough painkiller on it this morning or even if I put the cream in the right place, but all went well. The port "stick" was painless and we were off and running. The nurse discarded the first blood draw, got the blood for labs, went away and then came back to show me results with a thumbs up--good to go.

    We had three pre-meds for nausea first--decadron, aloxi, emend. Each took a little bit of time to drip through, during which time husband and I chatted, drank water, imagined Starbucks fancy coffees for afters and just waited to see what this new experience would bring. The "A" (and yes, it sure is red!) was next and took about an hour. No oddness during the drip. I had a conversation with the nurse about ice chips, which she said are fine, but that the real ticket to managing mouth sores is excellent oral care, along with swishes of baking soda/salt/warm water every time I stop by the bathroom. After "A" finished, we had an hour of Cytoxan. Nothing alarming. Then, we were declared finished for the day, she cleared my port and injected "heperin" to put it to sleep, and off we went.

    She did have cautions for me as the days roll on:

    1) Stay ahead of the nausea. They give us a LOT of anti-nausea meds up front. But if we start to feel a niggle of nausea, take one of the back up pills indicated and provided for home by the nurses. Also, stay on top of the Miralax (ohhh poop-or rather--can't poop?) because the one called aloxi in particular gums up the works.

    2) We should all listen to our bodies--if we feel like a walk will help, a walk will help. If a nap is better for that flash of fatigue, nap.

    3) We are all doing something that is absolutely CRITICAL for our recovery, and we should acknowledge that while chemo can be very hard at times, it is our ally.

    I know that the "crash" days come later in the week...or that is what I surmise. I am keeping a daily log of my chemo infusions and my reactions for each day. That way, I might have a better understanding of patterns and what works/does not work, etc.

    My nurse was named Regina. She was truly a professional and I felt safe and cared for her in hands and company. Thank you, Regina.

    Oh -- and group -- are you doing anything special to commemorate your journey through treatment? My husband and I are pondering something, but haven't thought of the "ah ha!" idea yet. I would love to hear your thoughts.

    Wishing all my fellow travelers the best experiences, fewest side effects, and all that is good. Thanks for starting this group and for the compassion, humor, and strength we share with one another.

    Best-

    -Angela


  • tjh
    tjh Member Posts: 469
    edited May 2015

    I had my first today. CT 4 cycles, 3 weeks apart. I did labs, then oncologist and then infusion. Started with anti-nausea and steroids. The nurse was great, the education piece is overwhelming, lots of info. Biggest things she stressed was that not everyone gets every SE, eat small meals 6-8 times a day so stomach isn't empty...better for nausea, exercise if I feel up to it, rest when I need, stay ahead of symptoms, Senekot S for constipation-after 2 or more days, Stool softner-after 1 day, Immodium for diarrhea, eat fiber, fruits, vegies, not spicy. Lots of info. So far I feel fuzzy but i don't know I if it is info overload, stress crash because the first time is done or SE. AND when we have sex a condom is required....YUCK😆 As for afterward...I am keeping a journal and next summer we are renewing our vows with family and friends. The wedding will be the beginning of the future.

  • Mrsgrass
    Mrsgrass Member Posts: 6
    edited May 2015

    My first chemo is tomorrow morning, 5/12. I am having TC. I haven't slept well the last few nights as I am anxious; also have been really emotional. I had my port placed last Thursday, not a big deal. Ice packs and ibuprophen took care of the pain.

    I will probably send my husband home during the infusion. I sat with my late husband through his lung cancer chemo and I know how boring it will be for him. I have my noise canceling headphones all charged and a small quilt to cover up with.

  • tjh
    tjh Member Posts: 469
    edited May 2015

    New development...DD came home from school with sore throat will have to watch and have her checked out. That is why I have the rest of the school year off😨

  • klanders
    klanders Member Posts: 244
    edited May 2015

    Maree, today is Day 11 after TC and no signs of hair thinning or hair loss... yet! My daughter's 20th birthday is tomorrow and I half expected to be shaving my head on her birthday but I think my hair is going to hold on a while longer.


  • Maree155
    Maree155 Member Posts: 20
    edited May 2015

    klanders - That is so cool...You fit the saying of keep your hair on... lol...I am so pleased for you...I have just finished my pre-chemo class...they come to your home over here so that was great...all sounds pretty much like what I was excepting...I will let you know how it all goes with tomorrow. Wish your daughter a happy birthday from NZ . Maree x

  • CatsRus
    CatsRus Member Posts: 310
    edited May 2015

    klanders, hope that hair stays well rooted! :-) I begin TC on Thursday and I think I am ready.

    Had a good boost today as we met with the RO for an opinion.... an emphatic rads not needed!! Yeah. He was so positive, way more positive than any other doctor I have seen and exactly what I needed right about now.

    Thanks all for your support. I'll let you know how I am doing.



  • CatsRus
    CatsRus Member Posts: 310
    edited May 2015

    Mrsgrass, hope your treatment goes well. I'm trying to convince my husband to go home but for now he's insisting on staying through the first infusion. I wish you, and your husband, health. I'll be two days behind you - I start TC on the 14th.



  • tjh
    tjh Member Posts: 469
    edited May 2015

    Very tired, major heartburn. Oncology nurse on call said Tums are fine, but if it comes back tomorrow to call clinic for Prilosec. Good Night and goo dc luck to those starting later this week.

Categories