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Starting chemo April 2019

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Comments

  • MathCampNerd
    MathCampNerd Member Posts: 1

    Hi guys,

    I'm starting chemo on April 5th and I'm nervous and not sure what to expect. I've checked lists on what to get and am trying to stay positive but I'm just scared. I'm getting put on FEC every three weeks for nine weeks. Am I going to be sick the whole three weeks? They've given me prescriptions for the nausea but I'm just nervous for how bad it's going to be. Any advice, thoughts or tips would be so helpful.

    Thanks

  • msmarie
    msmarie Member Posts: 72

    Hi all! Had my first AC today and it went about how I thought it would.

    So I am using Paxman. I have the smallest caps and I still wonder if they are too big. I had it pulled tight everywhere and I looked like a chipmunk bc the straps smushed my cheeks out. Also I have a ton of hair and when I went to wet it, I may have missed some spots. I could tell some parts of my scalp were colder. Oh well, I did my best. I didn't have long to get the cap on head, even with husband helping. Next time I may come to center w hair damp from the shower. It was a brain freeze for 10 min or so but not intolerable.

    I messed up with my emla cream and didn't put it on early enough. But it didn't hurt too much when she accessed the port, I had a good 30 min for it to activate.

    So I iced hands, feet, mouth, and head. Ooh that was tough. I brought electric blanket but didn't get it out. Was just using their blankets and another blanket I brought from home. Next time I will use electric blanket! I was a Popsicle. I need a better method for hand icing. I wrapped 2 gel ice packs Covered w a towel and Velcro ties. It was too cold directly on hands. For feet I had the special socks recommended here from Amazon and they worked well, switching them out once.

    I made sure to rinse w baking soda salt water, and with the closys rinse sometimes.

    Ok so I did a really dumb thing on Tuesday night and I put some Gorgonzola cheese on my spinach salad. This was pre-chemo, but on the no-no list, was not pasteurized. Duh, I forgot. Not sure if it was culprit, but I had some slight runs (sorry TMI) Wed and Thurs. I took Imodium. Maybe I should not have done that. I have been drinking tons of water. I guess I should take the stool softener or laxative now bc I don't have any urge to go. Sorry to be discussing this, but it seems to come up a lot and I saw some advice a few posts up. Not something to mess around with.

    Rx Meds: I am to take olanzapine at bedtime tonight and next 3 days. Dexamethasone days 2-4. I have some other Rx after day 4 for nausea.

    Feeling OK. Have slight headache, and despite drinking a lot of water, which MUST be flavored now, I am soo soo thirsty. The bad taste of water hit immediately. I took a swig of plain during infusion YUCK! I mostly make my own flavored water, but I buy a few, my fave is Flow, alkaline water and I like the cucumber mint and watermelon lime flavors. I get them at Whole Foods.

    Have been taking Claritin starting Wed. Got the onpro on arm.

    Nice to see more ladies, sorry you are here but happy we can share our experiences and tips.

    Thanks for the well wishes. Do we have anyone starting Monday?

    Farfalla, let's compare notes since we are only a day apart. Let me know how you are doing

  • bam320
    bam320 Member Posts: 84

    Yea MsMarie...one down!

    I feel like there may be some one starting on Monday. I will look back to see.

    I start A/C on Tuesday. I had my port put in on Tuesday. That was no joke. I am still really sore from that. Then Thursday I had a bone scan, ct scan of chest and an echocardiogram. Hopefully all comes back fine and I will start as planned. The bone scan has me terrified. I told my husband that I am looking forward to chemo because that is only one appointment every two weeks instead of multiple a week.

    Hope your SE continue to be manageable!

  • farfalla6
    farfalla6 Member Posts: 92

    hi MsMarie

    So glad you got through the first ac! I'm doing okay. Evening of my first treatment, I was fine till about 10 pm, then felt nauseated, took my olanzapine and fell asleep,woke up at 2 am and needed zofran, then this morning felt really dizzy and had low blood pressure; but after drinking a lot I felt fine, and was fine with a busy day, had an appointment with new endocrinologist and then with radiation oncologist just to meet him and get info, and I felt normal the rest of the day. I am taking zofran every 8 hours, and my face is v flushed from the steroids, but I felt pretty normal, of course I know that days 3-5 are supposedly the worst, but I'm appreciating any good day.

    I am also a type 1 diabetic for many years, no complications, but the steroids raise my blood sugar a huge amount so I couldn't eat much today, but I hydrated a ton,

    I had my Neulasta thing just infuse for an hour, so that’s done, and I have been taking Claritin

    I hope you have smooth sailing,


  • robinredbreast
    robinredbreast Member Posts: 49

    MsMarie thanks for sharing your experience! Good information. 

    MsMarie and Farfalla6 - when did you start the Claritin?

    Glad you're both doing well.

    I'm still trying to absorb as much information as I can prior to starting...

  • Merredith
    Merredith Member Posts: 1

    Hi there! We have a very similar cancer. I just had a partial mastectomy with SLN biopsy, that came back positive. I have my appointment with Onco April 17 to discuss treatment so we just may be going through this one together at the same time:) I have my surgical follow up on Wednesday and that’s where I’ll hear the plan but seeing as they scheduled me an appt with Chemo doc, I’m assuming chemo is in my near future. I don’t have my Oncotype yet but studies show that women <50 with node positive BC should have chemo because the score isn’t reliable for younger patients. I have read so many studies and I’m a nurse so my doctors must be losing patience with me lol I’ll keep you posted and will reach out when I know my plan so we can hopefully support one another. I wish you the best!

    Merredith

  • iChan25
    iChan25 Member Posts: 8

    Thank you for sharing your experiences!

    Starting dose-dense AC on April 2nd. I have a very aggressive large (>5 cm) primary tumor with 3 or 4 LNs showing up suspicions on ultrasound. This thing seems like it has grown from the time it was first diagnosed about 2 weeks so my doctors want to do neoadjuvant chemo first to try to shrink it. They’re treating it like TNBC because my HER2 is equivocal. I’m getting a PET-CT on Monday and praying hard that it is still regionally contained.

  • farfalla6
    farfalla6 Member Posts: 92

    I wanted to give an update and hear how others who have recently started feel, particularly MsMarie. So today is day three of my first dose-dense AC and I've felt almost 100% fine. Slight queasiness at times. Maybe slightly more fatigued but not a lot, had lunch with friends, long walk, cooked dinner. Only bad SE is steroid effects on my blood sugar. Oh and I do feel some dry mouth. How are others doing this weekend?

  • bam320
    bam320 Member Posts: 84

    Farfalla6, that is great to hear! You sound like you are really doing well. Are you still taking anti nausea meds? When did you start taking Claritin? Any constipation? Have you done anything to prevent it before it can start? I am considering taking some senna the morning of chemo and maybe some miralax during the day but don't want to over due it.

    Sorry for all the questions. Just getting anxious for my first one!

  • farfalla6
    farfalla6 Member Posts: 92

    I am taking Zofran every 8 hours. I started Claritin 2 days before and will take it through day 7. I have been taking colace every 100 mg in am and senekot in the evening since 2 days before the first infusion, but I am constipated anyway.

    Does anyone know if day 1 is the day of chemo or the day after?


  • Twelvestring60
    Twelvestring60 Member Posts: 65

    April second for me AC-T.

    They squeezed me in to talk to me the day before. I hope it gives me a chance to prepare.. Nervous is normal I think. Good vibes everyone! Get the job done, stay positive, laughter, the best medicine..

    Peace,

    Dorene

  • Dallas105
    Dallas105 Member Posts: 9

    Hi All,

    I am new to forums and this is my first attempt to post a message.

    My chemo treatments start on April 15th, my teach class is April 2nd.

    I will be having 6rounds every 3weeks total 18weeks of chemo then 6weeks 5days a week of radiation.

    I have decided to shave my head before my hair fall out. I am having a hair transformation hair party on April 14th. I chose to not to wear a wig, I am going to rock it with HATtitude and wear cute chemo hats.

    My biggest concern right now are the side effects. "weight gain and nausea". 

    I wish for all of us to have minimal side effects. Good luck all. 


  • msmarie
    msmarie Member Posts: 72

    Thanks for asking about me!

    I consider chemo day as Day1, so today, Sunday is day 3. I slept the best the first night, but last night I slept fairly well. I am taking 9 mg of Melatonin at night.

    I started Claritin the Wednesday before my Friday chemo. (know that it doesn't have to be Claritin brand, I am using grocery store generic antihistamine). Neulasta onpro dispensed Saturday as designed. No bone pain so far. Will take Claritin through Wed after chemo.

    I have had very little nausea. I am taking meds as directed. Not yet Zofran. I keep a little food in stomach, even if just a couple of ginger snaps and swig of ginger ale. Seems to quell it. Also I am drinking a lot of water, alkaline water mostly, not sure if that is helping my SE. You want those toxins out of your body.

    All fine with bowels. Remember I had to take Imodium Thurs before chemo. Then took a combined stool softener and laxative Fri-sat. It's all good. Just pay attention to body and adjust your OTC.

    I went to son's baseball game Sat evening and walked around the fields to get exercise. Felt good and fresh air was nice. I truly believe exercise is important especially during chemo. Get up, move around, stretch, do intervals. Santabarbarian on here has an interval routine, I think.

    I am in a good place mentally, I really try to be as positive as I can about chemo. Mind-body connection is real.

    Thinking of all who are starting their chemo this week. Keep the faith in the next step in your journey. You can do this!

    Love, hugs and prayers to all! MM


  • Twelvestring60
    Twelvestring60 Member Posts: 65

    Hello Dallas105,

    I'm a bit  new too. Lots of awesome people to help you out here. Everyone is a bit different but I hear that the class tells you soo much!

    There a website (If I'm not supposed to say , I'm sorry ahead of time) Called Chemocare.com that tells you about the drugs and effects. Some of it is heavy reading but a lot of information you can get  quickly to get a general idea of side effects. There seems to be a pattern for each person so you can work around good days and bad. I prepared different because I kinda got back and forth with with tests, etc. No ones fault just happened! So if you can, maybe call your dentist and get their advice for your teeth. Stuff like stomach issues ask your doc what you can do.. stuff like that. Mine were great. very helpful. Protect yourself I guess? 

    It's all going to go by quick dang it! 

    Dorene



  • Twelvestring60
    Twelvestring60 Member Posts: 65

    MM,

    I didn't see your post! Exercise yes.. And I will be adding to my question list. Thank you for that.. I just babbled and didn't really help there huh.. :]

    Good mind, good place! Yoga classes coming up. Love to be physical. I forgot to say that to Dallas105.

    keep on keeping on!!

    Dorene

  • Dallas105
    Dallas105 Member Posts: 9

    Thanks for the good information Dorene. I am going to checkout the Chemocare website. I have a few questions so I made a list ask at my training class. Good luck with your 1st chemo treatment on Tuesday. We will stay strong together!  

    Dallas

  • moderators
    moderators Posts: 8,739

    Welcome, Dallas05! We're so sorry you find yourself here, but we're glad you've joined our community and hope you find this to be a supportive place as you begin your treatment!

    The Mods

  • msmarie
    msmarie Member Posts: 72

    Hey all:

    I thought a post about OTC products might be helpful. Please share if you are using something and love it. Here are mine:

    Lotion/cleanser: I am using Vanicream line for gentle facial cleanser and moisturizing cream and ointment. Free of dye, fragrance, parabens, formaldehyde

    Teeth/mouth: got cleaning and some old fillings replaced before chemo. I use a prescription fluoride toothpaste. Rinse mouth often with the baking soda/salt mixture. Use CloSys rinse before bedtime. I did ice mouth during AC. No signs of mouth sores but keeping watch.

    Generics: grocery store version of Claritin and no bone pain from neulasta. Generic Imodium. I used name brand Colace two in one, stool softener and laxative. Worked like a champ but will try to see if there is a generic.

    Pain relief: MO said could alternate Tylenol and Ibuprofen. Haven't had to do that but I have it on hand.

    Hair: I am cold capping, do not wash hair but every 3-4 days. Using gentle shampoo w no sulfates.

    Here is where I need help: insect repellant. I don't think deet is good for us. Anyone have a natural one that works? Ditto with sunscreen, not sure what is bad for our skin.

    Soft beanies: what brand? Not looking for cashmere.

    Head scarves/do rags: any in particular?

    MM

  • robinredbreast
    robinredbreast Member Posts: 49

    Hi Everyone!

    MsMarie - Lemon Eucalyptus, Lavender, and Cinnamon oil all repel mosquitos. I have heard good things about Skin So Soft Bug Guard PICARIDIN, ordered some on Amazon for a trip to Scotland but haven't used it. I would inquire with your MO's nurse. Coolibar clothing all has SPF 50. I wear this for sunscreen. Can be a bit pricey, but worth it to not smear lotion on all the time (plus it lasts multiple summers). While they have their own website, Amazon also sells Coolibar. I ordered chemo caps/beanies from Cardani. The company was founded by a woman who is a cancer survivor. The packaging is thoughtful, professional and well-wishing. These bamboo caps are breathable, naturally antibacterial, and oh so soft. Again, they have their own website, but Amazon also sells Cardani caps.

    To those who are starting chemotherapy this week, you are in my thoughts.

    Best to everyone...

    "You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'" ~ Eleanor Roosevelt.

  • bam320
    bam320 Member Posts: 84

    It looks like we have myself, twelvestring60, ichan25, and kimg starting A/C tomorrow. DebraC is starting Cytoxan tomorrow and MathcampNer starting FEC on April 5th and a few more up for next week.

    Even though I have had surgery already, I feel like this whole cancer thing is going to become much more real after chemo starts. Best of luck to everyone and keep us posted on how things are going.

  • msmarie
    msmarie Member Posts: 72

    bam320 and all the ladies starting tomorrow, you are in my thoughts and prayers. You can do this! Positive thoughts will get you through.

    Chime in when you can with updates or when you need some moral support.

    I slept well again and no nausea. I am a tad fatigued, this being my day 4. Taking all meds as prescribed.

    All the best to those starting this week! MM.


  • kimg
    kimg Member Posts: 19

    I start Wednesday. Port went in this morning and I'm home resting. Went to breakfast after. No real pain... just feels weird when I move certain ways. Tomorrow I get another fill in my expanders, then start AC early Wednesday.

  • Alicesneed
    Alicesneed Member Posts: 78

    I get my port in next Monday 4/8 - meet with oncologist 4/10 and anticipate starting chemo the week of 4/15. I'm dreading it. I'm really having a hard time getting my mind around it and accepting it for some reason. I know the more positive I can be the smoother things will go but I am just really struggling with this. Anyone have any strategies for pushing through? Perhaps it's the fear of the unknown. I think I may go ahead and schedule the chemo class - maybe that will help.

  • debrac
    debrac Member Posts: 63

    Alicesneed,

    My husband and I went to chemo class last week. It was very helpful. My husband benefited the most sense he doesn’t read these posts. He felt more confident to support me and how to do it.

    I will have my first chemo tomorrow. The nurse navigator from the class called me this morning to check on me and see if I started the pre meds. I thought that was great to have a personal call.

    You’ll get there

  • msmarie
    msmarie Member Posts: 72

    alicesneed, sorry you find yourself here but we will try to help you get through.

    For me honestly it wasn't as bad as I was expecting, although I'm just through Round 1 of AC. I'm sure I will have some days that aren't as good. I have been eating very healthy and drinking a lot of water. I plan to keep working throughout chemo. "No bad days" is what I tell myself. And so far so good.

    These boards are loaded with good information and support to prepare you. Don't hesitate to reach out for any support or guidance. MM

  • Frog-on-the-lilypad
    Frog-on-the-lilypad Member Posts: 159

    Hello ladies, jumping in from the April 2018 chemo group. Wishing you ladies lots of strength and smiles. I started my chemo exactly one year back. But here I am reading up articles on how to tame my unruly curly hair. It was quite a journey from reasearching chemo SEs to curly hair products, but you will get there.

    On DD AC, the second day to the sixth were the hardest. From day 8 you would feel back to your old self. Use plastic cutlery if the metallic taste bothers you a lot. Ask your nurses to help with SEs if they feel too much. Also, have the nausea pills as directed. I did not need any nausea pills on Taxol though. It comes with a different set of SEs.

    Take care all of you. Be kind to yourselves.


  • robinredbreast
    robinredbreast Member Posts: 49

    Hi Everyone,

    Met my new MO today (local MO). She is awesome!! No need to drive 4 hours for chemo... yay! As a matter of fact I start my TC tomorrow!! Sooo rounding out the April 2nd group as the sixth starting tomorrow.

    I'm excited, nervous, and happy to be getting this under way (and over with).

    Because of the late scheduled chemo, I missed my am dose of steroid this morning. Hope that doesn't make my SE's worse. :-|

    Best to everyone. Talk soon!

  • farfalla6
    farfalla6 Member Posts: 92

    Wanted to give an update, I'm day 5 post first dd AC. I haven't had bad side effects; mostly some queasiness if I don't take Zoran and I'm more tired in the evenings than I usually would be. But otherwise i kept to my normal schedule and felt much better than I had thought. I hope this pattern is relatively consistent with the next cycles, because it wasn't as bad as I was fearing! I was pretty active about avoiding constipation (thanks to all the tips I found on this site) and Ive been taking colace (300mg) and Senekot daily and with this regime neither constipated nor diarrhea. My only not great thing is that I am only eating what I am craving..whcih is pizza and bagels for now.

    It looks like MsMarie, you also had a relatively okay time? I hope those of you about to start in the next few days feel okay, it is comforting to know we are going through it together.

  • MyFavorite
    MyFavorite Member Posts: 9

    First time poster, here! 😊. I start dd AC on Wednesday this week. I’ve been reading and reading and reading. So, I hope I’m prepared for everything. The more I read, the more control I feel like I have. I feel really good and positive, and I’m just ready to get this started. I’ve had two delays, so I’m so happy to finally be moving forward!!!

    I had my port put in two weeks ago, and have had no issues with it so far...other than it being right underneath my bra strap.

    I’ll do 4 rounds of AC, every two weeks. Followed up with 4 rounds of Taxotere, every three weeks. Then surgery and finishing off with 7 weeks of rads.


    Let’s go, girls!!! ❤️❤️❤️

  • annie60
    annie60 Member Posts: 296

    So glad you all are starting this but so sorry you need to. We have a wonderful group that started in October 2018. Some of us are still having chemo. If drinking water is a problem, due to taste or nausea, try lemonade. The Crystal Light lemonade made me have terrible indigestion so I make my own. Drink, Drink, Drink!! even if you can't eat. Dehydration is a big problem. For several days after chemo, I even got up in the night every couple of hours to drink. I hope the SE's are mild and you fly through this. If I can help in anyway, just ask. I could not have made it without my group from October.

    Annie

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