Starting Chemo May 2017

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  • ParakeetsRule
    ParakeetsRule Member Posts: 571
    edited May 2017

    I'm starting Monday too, port placement at 8am and then chemo at 9am. We're having totally different types of chemo drugs though so I don't think we'll be able to compare notes very much! Darn. But then henna head tattoos sound awesome!! I don't live near the beach so it might be hard to find a place to do it. Another darn. :)

  • notanisland
    notanisland Member Posts: 142
    edited May 2017

    Hi NCBeachGirl, I'll be thinking of you at your first round of chemo, as I have my port placement on Monday. And if they make a move toward my arm I'll let out a "STOP!" though I'm pretty sure that I will have it placed in my right chest. Good luck to you. Let us hear how it goes.

    MoodyBlues, I recall being very anxious while waiting for my CT and Bone scan results. You sound like you're in a better emotional state than I was! I'm wishing you a short wait and good results.

    Lovepugs, thanks for the info - placing the port on the opposite side to avoid the port being radiated makes perfect sense! True, it doesn't matter if, like you, both sides are radiated, or if, like me, chemo comes before surgery and radiation therapy. My port will probably be removed by then.

    Leesad, Glad you're feeling better and up and around! Bet your dogs are happy!

    Wishing all of you well. And to all of you - whether you're moms and/or daughters, HAPPY MOTHER'S DAY!

  • NCBeachGirl
    NCBeachGirl Member Posts: 66
    edited May 2017

    ParakeetsRule, if you live in an area with an Indian population, you may be able to find henna artists. Indian women often decorate their hands for their weddings. I have no idea what it costs, and no idea how long i'm likely to be bald. So there's the thought that maybe it would be cost effective to just go ahead and get a regular ink tattoo--LOL--as the henna paint lasts only about 2 weeks. But then there's the immune system issues... would it be too dangerous to get a regular tattoo? My guess is that it's not a smart idea. The henna head tattoo I saw was really pretty. If I weren't always so freaking hot, I'd be okay with scarves and stuff. The henna tattoo seems like a very good option for me. NC in summer is miserably hot and humid!

  • msrobin58
    msrobin58 Member Posts: 134
    edited May 2017

    Yes I'm still in the hospital, but I've had a much better day. I feel better, even ate some real food with some semblance of relish. But it helped when hubby brought me contraband. Nope, not marijuana. Salt! LOL I also was able to take a walk around the floor, masked of course. And my numbers continue to climb. They are pleased with progress. It seems my numbers have to get higher before they plan my new port, and release. My second treatment is scheduled for this Thursday, but I can't imagine in what universe I'd be ready for that. Secretly, I'd love to postpone, as I've been put through the WRINGER. But here's to more improvement tomorrow.

  • notanisland
    notanisland Member Posts: 142
    edited May 2017
  • msrobin58
    msrobin58 Member Posts: 134
    edited May 2017

    It's a good news, bad news kind of morning. Good news is my white blood counts have climbed enough to be within normal, and they no longer have to mask up just to see me. They seem fairly confident that I'll be able to get my new port tomorrow. Still not certain about when I'm going home.

    The bad news is I'm completely and utterly exhausted. Because we are all breast cancer warriors here, I'm not going to pull any punches. The strong antibiotics they are using to fight my infection have given me diarrhea. They've determined it is NOT Cdiff, which is good news. Still, it's impossible to sleep like this. But we're working on solutions.

    For you mothers in the group, I hope you are able to grab some family enjoyment out of the day!

  • babybiko
    babybiko Member Posts: 10
    edited May 2017

    msrobin58, thank you and I will start reading some of your post. I hope your are feeling better.

  • MamaEnki
    MamaEnki Member Posts: 10
    edited May 2017

    Hello ladies, I have been reading your posts and felt it was probably time for me to join the group. I had my first round of AC on Tuesday. I am still recovering. I think the most annnoying thing has been the constant sore throat. I was supposed to start chemo in April, but I also had some delayed healing from my DIEP reconstruction, so here I am!

    I am 39 years old with 3 kids, 7, 5 & 2. Of course my youngest 2 got colds right before I started so I have been trying to avoid their germs. I got a wig on Friday. Luckily I live in the foggiest part of San Francisco, so summer heat shouldn't be a problem.

  • notanisland
    notanisland Member Posts: 142
    edited May 2017

    Happy Mother's Day, MamaEnki. Hope Day 6 is the day you start feeling much better. (But your WBC is probably at a low point - avoid exposure to coughs and sniffles.) Some of us will be joining you next week so keep us posted. Wish you the best

  • ParakeetsRule
    ParakeetsRule Member Posts: 571
    edited May 2017

    I'm starting tomorrow!!! AHHHHHHHHHHHH. Quick question...were any of you given steroids to take a couple days before chemo started? I was not, but my mom and aunt both said they were, and now we're all worried that me not having any is bad. (but nobody at the hospital ever mentioned it to me!) I am doing a different chemo regimen then they did so I'm hoping that's why. I don't remember what they had but I'm doing A+C immediately following my port installation in the morning. :0 I know it's terrible of me but I completely dropped the ball on preparation. I just couldn't summon up the motivation to clean, shop, or even read anything about chemo. (other than what I've already read on this board) I'll probably regret it later but I just couldn't do it. I spent all weekend stuffing my face with food and catching up on Colbert, Noah, and Corden...

    msrobin58, I hope you get to leave the hospital soon! My mom also ended up in the hospital because of chemo and I know it really sucks.

  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited May 2017

    parakeetsrule - I was not given steroids to take during chemo except as part of the IV pre-meds

    Best of luck tomorrow.

  • NCBeachGirl
    NCBeachGirl Member Posts: 66
    edited May 2017

    ParakeetsRule, I'm only getting steroids as part of the IV pre-meds like DodgersGirl. I'm happy about that, as I really want to avoid any kind of weight gain, and I've heard some people gain when they get the bigger doses of steroids.

    Like you, I'm not as prepared for tomorrow's chemo as I'd like to be, but it seems silly to buy everything on the planet that I could possibly need when I have no idea just what I'm gonna need. I did get some things--travel-size hand sanitizer, stuff to soothe a burning butt or girlie parts, crackers, green tea, bottles of water, BioTene toothpaste for sensitive mouth, Ensure, some bland convenience foods like the kind of rice you nuke for 90 seconds and voila it's done. I got a prescription for anti-nausea meds, and I have my CBD hemp oil to help protect my nerves and other things it's said to help with. Beyond that stuff, I'm just waiting to see what I'll need.

    Man, what a party this is going to be. I'll be at chemo for most of Monday. I guess that first day is a super long one. Will take my computer and iPhone, and some things to eat.


  • ParakeetsRule
    ParakeetsRule Member Posts: 571
    edited May 2017

    Thanks you guys, that makes me feel a little better. I hoped it was just different regimens and not a huge oversight! I'm kicking myself now for not insisting on a full tour of the infusion rooms though. I don't even know if there's wifi or if I'll have a cell phone signal, or if they have ice chips. Crap. Oh well. I do have some food to eat after I get home but if I need anything else I think I can get it by buying Safeway delivery stuff online if I don't feel like going out.

  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited May 2017

    ParakeetsRule and NCBeachGirl -- best of luck today at the Chemo Lounge

  • lovepugs77
    lovepugs77 Member Posts: 296
    edited May 2017

    NCBeachGirl & ParakeetsRule, good luck today. Let us know how it goes.

  • Ciaci
    Ciaci Member Posts: 304
    edited May 2017

    Hello, all... I had a lumpectomy with 3 nodes removed, three weeks ago. Today I go to get my port, and I'm REALLY freaking out about it. I breezed through the lumpectomy, probably because I was unconscious! I was totally calm that day, not even nervous walking into the OR, but today I'm shaking. I don't know why this is so much more frightening. I think the lumpectomy was a good thing - getting rid of the tumor - while the port is just the beginning of a very long road. Sorry, just needed to get that out. I'm trying not to let my husband and kids (22 and 24) see how scared I am...

  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited May 2017

    Ciaci- good luck today with port installation.

    It will be over before you know it

  • lovepugs77
    lovepugs77 Member Posts: 296
    edited May 2017

    Ciaci, good luck with the port placement. I had mine last Wednesday, and recovery really hasn't been bad. My neck was a bit stiff, and I had a little bruising, but I think it has been way easier than my other surgeries (lumpectomy & ALND).

  • Ciaci
    Ciaci Member Posts: 304
    edited May 2017

    Thanks so much - it's nice to hear from someone recently through this!

    Leaving for the hospital now... I'm feeling a bit calmer.

  • Ciaci
    Ciaci Member Posts: 304
    edited May 2017

    lovepugs, I just noticed you start chemo this week - Good luck!!

  • msrobin58
    msrobin58 Member Posts: 134
    edited May 2017

    Well, they say I'm getting out of the hospital today! Got my new port put in this morning, and they immediately accessed it while it was still numb, for my IV antibiotics. Can't wait to get home!

    Spoke to a doctor here from my cancer center, she said she'd speak to my MO on when to do my next treatment. Originally it was scheduled for this Thursday, but I sure wouldn't mind a little delay after all this. I asked her about how to prevent this in the future. Each dose will terrify me anew! She did not have any comforting answers. When I told her that I feel I'll want to isolate myself, she said it wouldn't do any good, saying most of these types of infections come from within your own body, like your own gut bacteria or from your skin. I'll have that same conversation with my MO and see what he has to say.

    My whine for the day is that I already had no idea how I was going to get through a "normal" chemo. If you add in an infection with a five day hospital stay, I want to go hide in a cave. How am I going to find the strength to do all this? It seems an impossible feat.

  • notanisland
    notanisland Member Posts: 142
    edited May 2017

    ParakeetsRule & NCBeachGirl, Best of luck with chemo today. Hope all goes smoothly.

    I'm on my way to the hospital for port placement - right behind you, Ciaci. You'll be fine. I haven't had surgery yet so I have nothing to compare it to, but I'm surprisingly calm this morning. Of course, that could change at any moment!

    See you all later to compare notes. Thanks for all the support and info. Lots of hugs.


  • msrobin58
    msrobin58 Member Posts: 134
    edited May 2017

    Ciaci, you're probably at your port placement right now, and I wish you all the best. They'll give you something to relax.

    Parakeetsrule and NCBeachGirl I'm sure your infusion will go smoothly today. Just sleep through it! I was NOT given steroids to take ahead of time, just as a pre med.

    MamaEnki I found the sore throat did fade and then just turned into this numb tongue thing that never goes away. Makes food taste funny too.

  • notanisland
    notanisland Member Posts: 142
    edited May 2017

    MsRobin, So glad you're going home. I'm so sorry that this setback has made you question your ability to get through chemo. I hope that once you get home and have a chance to heal and regroup, you'll be able to return to treatment with the determination and optimism we've come to know. I'm thinking of you and sending best wishes and lots of hugs.

  • msrobin58
    msrobin58 Member Posts: 134
    edited May 2017

    notanisland, the oncologist that visited me here is from my cancer center, but not my personal MO. Still, I heard she put on my chart to consider taking me off dose dense and returning to the more traditional style every three weeks. I'm not sure whether my oncologist will agree, but I can see some benefit in that. But it would drag things out though.

  • Hope1970
    Hope1970 Member Posts: 13
    edited May 2017

    I'll be starting shortly too and am happy to discover this group. msrobin 58, I will be having the same regimen as you (I'm in Europe so it's EC but the same class of drug as A) and I also have ILC. I have been feeling very ambivalent about the chemo (honestly I have moments of pure unadulterated fear and am still questioning if it's the best decision). I am relatively young (46) and my youngest daughter is 11 so I am deciding to embrace whatever treatment is at my disposal to prevent recurrence (the challenge is getting my mind 100% on board). However, I have also known of people who have continued to work through chemo and have no long-term side effects from the treatment. On the difficult days I am going to focus on the idea "this too will pass" . On the ILC forum someone posted about fasting during chemo to reduce her side effects. She credited this with the fact that she had no long-term neuropathy. Has anyone heard of this? I'll be having an appointment for chemo tomorrow so hopefully will learn about ways to reduce side effects.

    I am an American (originally South African) living in Frankfurt. The center here has psychologists who specialize in oncology and will attend chemo appointments with you. I think I'll take advantage of this at least for the 1st time! My lymph node involvement was unexpected and before surgery chemo was not being recommended. I also needed an emergency surgery to stop excessive bleeding following reconstruction and a 3rd surgery to ensure clean margins. Because of this and personal factors (we were due to leave Germany on 7/14 and head to Qatar) I was experiencing a lot of anxiety in the hospital . Demetria, I can really empathize with your racing thoughts in the middle of the night. I hope you know you are not alone in this experience. As I am 6 hours ahead if you message me privately I'll give you my # and when you are struggling in the early hours of the morning and everyone is sleeping, I can be there so you are not alone. I met with the onco- psychologist when I was in hospital. Demetria if this option is available to you, I would recommend it. My session was very helpful and she was able to help me gain perspective and answer a lot of my questions regarding complementary therapies based on her other patients' experiences. She cautioned against taking supplements without consulting your medical team but said that many of her patients found acupuncture (only to be done by Dr trained in acupuncture) to be helpful.

    For me, I struggle with the thought that I am not in control in this situation but to regain some sense of power over this, I try and influence what I can i.e diet, exercise etc. I got a great book, "The Cancer Fighting Kitchen", which has suggestions on recipes and foods that help during chemo.

    I am wishing you all the greatest success with your treatments; we'll get through this!


  • Hope1970
    Hope1970 Member Posts: 13
    edited May 2017

    msrobin58, I posted my earlier response before reading through the thread. I just wanted to say I'm sorry that you had to be admitted to hospital. I'll be thinking of you when you go for your next treatment. It's so understandable that you would want to delay it!

  • MamaEnki
    MamaEnki Member Posts: 10
    edited May 2017

    msrobin58 I am glad that the sore throat will go away. It was driving me crazy yesterday. I am glad you are finally leaving the hospital. What a scary thing to go through and after the first chemo too! Hopefully it will make the next ones easier.

    Hope1970 I have The Cancer Fighting Cookbook too. I have made a few recipes and they are as delis has they can be. The ginger soda is really good. I actually look forward to drinking it. It took me awhile to adjust to the idea of chemo, too. I was originally diagnosed DCIS, so was just going to have surgery. But my breast surgeon told me that when there is a palpable lump in younger women, they tend to have lymph node involvement as well. Lucky me, the tumors in my lymph nodes were larger than in my breast.

    For everyone who hasn't started yet, chemo is the cancer treatment boogeyman. It is so much scarier before you begin, not so bad once you start. That being said I am still dreading my next infusion

  • notanisland
    notanisland Member Posts: 142
    edited May 2017

    Hope1970, Interesting to hear what's available to you in Germany. I have had acupuncture in the past for sinusitis, sciatica, overall health, and depending upon the severity of my SEs (I start AC on 5/18) I may look into acupuncture and reiki and try to schedule sessions around treatment days. I can imagine that if your lymph node involvement was unexpected, the post-surgery recommendation of chemotherapy must have come as a shock. I'm glad you've decided to use all the resources available to beat BC and do all you can to avoid recurrence. That's the spirit!

    As for fasting during chemo, I also read the posts between Amapola36 and SerenitySTAT on Topic: Anyone Fasting During Chemo (4 hours before, 24 hours after)? which peaked my interest too. I did an online search for studies, most of which were done on animals by a team led by Valter Longo, professor of gerontology & biological sciences at USC. It seems that fasting may reduce SEs and increase the efficacy of chemotherapy. I've only scanned the reports, so haven't developed a personal opinion, but one thing I would definitely do before considering fasting before and during chemo, is to discuss it with my MO.

    Thanks to you and MamaEnki for the recommendation of "The Cancer Fighting Kitchen." Right after I log off BCO I'm going to see if it's available as an e-book. I wish you the best!

  • notanisland
    notanisland Member Posts: 142
    edited May 2017

    Ciaci, Hope your port placement went well. I had been nervous about it the past few weeks when I read about how uncomfortable, even painful it was for some. But by the time I walked into the hospital this morning I was totally calm. Maybe because I had delayed it 5 days to enjoy a family "reunion" and Mother's Day with my daughter, I was finally ready. I think that my acceptance combined with the skill of my nurses and the interventional radiologist who performed the port placement helped it to go very smoothly. Unless I press on the incision on my chest or neck, I have no pain, no aches, no discomfort. The only thing that's slightly bothersome is the "pulling" of the bandage - and that's not worth complaining about. I'll go back in 3 days for a quick check and then straight to my oncologist's clinic for labs, pre-meds and my first round of AC chemo. If that goes even a fraction as well as the port placement, I'll be grateful! So I'm going to start meditating, and finding calm and acceptance now!

    I hope ParakeetsRule and NCBeachGirl did well at their first infusions. And I wish the best for all who are starting or have already started chemo this month.

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