Chemo starting March 2019
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As for chemo bags— I found I didn’t need blanket, they have nice warm ones available at my cancer center. I did take a stuffed animal( forgot it 1st one and cried) just for moral support if you like those things. I always have more stuff packed in my bag than I need or use but the one thing I apparently took out and never put back in was fuzzy gripper socks. I have found I like to take my shoes off and so much easier and warmer to have the socks than have to put shoes back on every trip to the bathroom.
As for timing, I was told 4-6 hours total and yesterday was my first no complication chemo and I was there 5.5 hours for my AC treatment. The taxol will be longer because it takes 3 hours to infuse vs 1.5 for AC.
Good luck to everyone starting this week
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I always made a frosty smoothie and brought that to sip on (for mouth cooling, to prevent sores) and some healthy snacks. It always made me shake my head when I saw the snacks my center provided-- total carb and sugar crap-- so I brought veggies, salad, almonds.
One other thing to bring is a heating pad which you can drape on your breast. That brings the chemo to the warm area where it belongs!
I always preferred to drive myself to chemo and space out, noodle on my laptop, or read rather than talk to a companion.
Re being scared, try to think of the chemo as your friend. Seriously-- welcome it. It is coming in to clean out the disease in your body. I liked to visualize it as sunlight entering my body and getting rid of the shadows. I think that visualization can be powerful. I also visualized a sort of "pac man" action of my immune cells eating my cancer. Finally, I asked my cancer to be willing to die for our mutual benefit (otherwise, eventually, we'd both die!).
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Gigi. I was super high on both. 95 ER and 85 PR.
Santabarbarian. I love the pac man analogy. I am going to use that
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Dianabee - I think it is great your hospital has a cancer meeting like that. Do they have a group so all the newbies can keep in contact with each other? I am sorry you knew someone else in the room but maybe you can be a source of support for each other. My cancer center the day I found out I needed treatment basically said we can talk now or you can come back after you have processed the information. I ended up saying let's get it all out there now and BAM my room was filled with people ready to give me my plan. Now I just want to get started....the 14th cannot come soon enough.
Pokyspider - We need to come up with a list of projects to keep us all busy while we wait ;-) Good luck this week with your upcoming surgery. Please keep us posted so we know you are doing well.
Fallschurchgirl - Is there a way in the 1st post of this you can edit it to keep a running list of who has joined our group and when they are starting along with what their treatment is?
I hope everyone had a nice relaxing weekend. I pushed myself a little too hard this weekend according to my husband and my body telling me I am tired. We traveled 4 hours from home to spend the weekend watching a lot of volleyball (daughter plays - at least they got a medal). It was rough when balls went flying where they shouldn't ducking and protecting myself throwing my hands up in the air. My port area feels like I pulled to hard when I move now (thankfully I go to the doc for my post op tomorrow - really hoping it is OK and just maybe bruised from the surgery still). This week is just a few more appointments, nothing major. Maybe I will finally be brave and go get my hair cut.
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betterdaze. I can try. 1st chemo is tomorrow. So let me get through that first and then maybe Tuesday I will be feeling up to it
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Triple Positive.
Starting Taxol/Herceptin on March 11.
Good luck to us all!
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fallschurchgirl - good luck tomorrow! Please keep us all posted so we know how you are doing. You will be in my thoughts all day - sending you all things positive to get through your day!! XOXO
BatyaD - welcome to our group!
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I completely relate to overdoing it this weekend! Finally felt better post surgery and went back for full work week this week, then went out last night and spent today at a chess tournament with my son... feeling so so tired I’m in bed by 8pm watching American idol with my 6 year old!
I’m trying to stay busy and squeeze in everything before ACT starts March 15 (port in March 14)... glad to have this group to go through this together and trade tips and hopefully more ups than downs...
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LizzieAG how old are your kiddos? Mine are 15 (almost 16 as she keeps reminding me LOL) and 12. I feel like while I know I am doing alright I want to do everything...but learning that may not be the best thing physically. We have another tournament weekend this coming weekend but thankfully it is here in town which makes it a bit easier on me. Looks like we are both doing AC+T -- what is your regiment? I am doing 4 AC every other week and then 12 T weekly. I am a bit nervous but at the same time just ready to get it over with. The anticipation of not knowing fully how my body is going to react is the worst part of all of this. I hope we all get through are treatments easily. So very glad we all have each other too!!!
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hi , I need to find some information but don’t know where to look. I’m due to have 1st chemo on 13th March. I’ve had a cough for a couple of weeks and decided to get my GPs nurse practitioner to listen to my chest. She said as no fever not likely to be chest infection but?? Few crackles in chest so prescribed antibiotics just in case. Tbh I feel ok and I’m not sure whether taking the antibiotics could delay my chemo? But on the other hand if I don’t take them and do have a chest infection it will delay chemo. What should I do? I would be finished antibiotics before first treatment.
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I had a port infection and took antibiotics during chemo.
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hi,
I’m jo, just diagnosed with 2cm HER2 + er - grade 3 ductal carcinoma with extensive DCIS. I’m starting neoadjuvant chemo on 13th March and then will have mastectomy. On ultrasound all my nodes looked ok so I’m hopeful. At the moment I’m trying to prepare the household for mummy being less able but I’ve come down with a cough which I’m paranoid will delay my treatment. It’s still all so unreal and as of yet I haven’t had any time alone to really process what’s happening. When does all this start to feel real
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It feels real for different people at different times. For some, it's getting the port, some its the diagnosis, some it's losing or altering hairstyle. I still don't want to believe it at times but then the SE hit me and I can't ignore it! I wish you well on this journey none of us want to be on.
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Josarah we welcome you to our community. Indeed, it feels extremely surreal for awhile! You're not alone at all with that. We're glad you found this group for support. We're here for all of you!
The Mods
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Hi Ya'll! I am from the January board and will finish my fourth round March 18th. I just wanted to pop in here and say for those who are starting you will get through this!!! You will have good days and bad days. If you get offers of help take it! You will learn to let things go. Most important advice is listen to your body. Rest when needed and drink, drink, drink!
For me when it became real was when I sat in the chair for the first time. However, I was calm. I wasn't scared or nervous. I listened to the nurse and asked a ton of questions.
Good luck and take care!!
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Hi Jo! On your 1st post I would call your oncologist and ask them what they think of what is going on and if it would delay starting your chemo or not. I am sorry you have had to find our little group but glad you did. We can all help each other on this journey in one way or another. I agree with Mncteach, it seems to hit us all a bit differently that this is real - for me it has been waves of reality....like finding they thought it was cancer and having more tests, then the actual diagnosis hit me differently, then it was all the appointments and information, then was the surgery which I think hit the hardest the day of - since then it has been the waiting for chemo to start. I am prepared that day may be more of a struggle then I anticipate now. As for it being real I certainly still very much feel I am living in a nightmare and how could this be my life!?!?! and in my case this has all been going on since the end of November. I see you too are a Mom - how old are your kiddos? Mine are almost 16 and 12. I totally hear you on preparing the house to be a little less Mommy doing everything. I have been trying to make foods they will like and freezing meals while also figuring out what I may want to eat too LOL I am unsure how to really prepare but doing our best is all we can do
~Sophie
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Hey, ladies.
First chemo under my belt!
Took about 5 hours. Blood work. Then an hour for pre meds. Benadryl maylox zofran steroids. An hour and a half for Toxatare and an hour for Cytoxan. Have Neulasta on my arm. I was all worried about the needle going in, but it was easy. It beeps and then it is like a finger prick. It goes off tomorrow at 3. I have been taking Claritin.
The port worked well. The only pain was the initial prick (and I had put lidocaine on it) and then nothing. Besides a nasty taste in my mouth, I really never felt anything. I did get a bit nauseous in the last 30 minutes. Came home took a nap, drank lots of water and 2 walks. But finally had to take a nausea med in the afternoon.
Hoping I can sleep through the night. And we will see what tomorrow will bring. I hope everyone had a good Monday and got lots of prep done for the coming weeks
Jean
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fallschurchgirl,
We have similar stats. Did oncotype determine your chemo? I'm still waiting on mine to come in.... just wondering what determined yours.
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kimg. Yes. Oncatype. We were blindsided. Mine is 30.
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I had my port put in today too. I am also very sore, but mostly closer to my neck area. Everything went just fine, the doctor and nurses were awesome. I did have a bit of unsettledness in my throat before and after the procedure but I think it was just my nerves. But when I got out my family said my regular surgeon's office called and set me up an appointment for a MRI next week. I just had a CT scan with dye on Friday and a bone scan on Thursday so I wondered why? I called my onogolgist and they said they didn't know why either. It hadn't been ordered that they could find. I will talk to my cancer doctor personally before that MRI is done though. If it's necessary, I will but not to just line someone's pocket, I won't
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Hi Jean! I am so happy you checked in and all went well today. 5hrs doesn't seem too bad - how often will you be going in for your chemo? I start AC next Thursday every other week for 4 rounds then T weekly for 12 weeks - I cannot wait to start since the sooner we start the closer we become to finishing up. I nearly forgot next week to start my Claritin too - thanks for the reminder
I hope you can rest too tonight ((((HUGS))))Did you all have an oncotype or a mammaprint ran? My oncologist didn't run anything because of the type of cancer, that cancer was found in my nodes, the high ki-67, the # of tumors, the grade of the tumors, that the tumors were also located very close to my chest wall and that I am young.
Today I ended up getting a little reprimanded by my surgeon for going to my daughter's volleyball tournament this weekend. She basically let me know it was too soon after a major surgery to dodge balls. My port is alright but I did jerk quickly to avoid being hit by balls a few times and now have pain but it should be ok. We will know when the port is accessed next week - it does feel like nerve pain or something when I move just the right (wrong) way, she has prescribed a compounded lotion to be rubbed on the area that has pain meds, muscle relaxer and something for the nerves. Maybe this weekend I will stay out of the gym as much as I don't want to (we will see LOL)
Grandma05 - hopefully your port site will heal up quickly for you. I don't know if it is everywhere but here it sounds like if BC is found MRI is usually done next to see if they can find more or anything was missed. My BC was actually only found because of an MRI and they kept saying to me how I now got to skip the step of having an MRI before they move forward with surgery or treatment.
~Sophie
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They tried to run an oncotype but that’s when the tumor decided it really was triple negative, had been slightly PR positive in earlier test. I was basically told I was in chemo group from the start just weren’t sure if it would be big guns (of course it was).
Wishing everyone minimal SE and lots ofrest!
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Hey fellow groupies, sorry to have to meet under these circumstances but I am so glad found you.
I had my first chemo infusion last Friday. Doing well so far. Thanks for sharing your experiences.
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Hi Unbreakable1! Glad you found us here. What is your chemo regiment going to be? I am glad that your 1st one is behind you and that you are doing well so far.
~Sophie
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Hi betterdazeahead, I will be doing TC x 4 (3 weeks apart).
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Hey all!
Am starting TC chemo today (!) for ER+, PR+, Her2- IDC with a high Onco score 🙄. I went to my first breast cancer Meetup last night and one woman joined a chemo group on this sight over a year ago & they are all meeting up, 2 years post. How cool is that?
I am trying the Paxman (and am taking heating pad). I wonder how easy to pee when I’m hooked up to everything? And with TC, it’s so important? Like, can I just do my infusion in the bathroom (haha).
I am going to get some Biotene mouth wash. That was a tip from the group. I am also trying the finger and toe packs, my oncologist said it will help with preserving nails and neuropathy. I’ll try to post a picture of the gloves. My place in Seattlehas them for use, luckily. But it will be cold! He also advised me to try Glutamine and B 6 supplements. It may help with neuropathy
Loved the idea about working with your chemo & asking your cancer to go. Although I have my angry days, I feel better with just making peace with it.
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Hi Gang,
I will begin a TC protocol on March 11, my port placement is scheduled for Friday, March 8. I am stage one, had a left mastectomy with a SGAP reconstruction on Jan 13. I had 8 lymph nodes removed and all were negative, unfortunately my onco score came back at 33 so my my oncologist suggested the TC protocol. I am scheduled for four rounds every 3 weeks.
Apparently on taxotere, it is common for the hair to fall out between days 14-18, so I will probably cut my hair short one week after my first infusion. I think I am ready to face this journey, but sometimes get overwhelmed by all of the suggestions of what I may need.
After my surgery in January, I was convinced that breast cancer is not for WHIMPS!! We are strong women who will get through!!
Wishing you all a positive experience!
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Hi Unbreakable, I will be having 4x TC starting the first week of April. So I’ll be following your experiences. Second lumpectomy scheduled for tomorrow, want more clear margins.
Kimg and fallschurchgirl - Oncotype was done to determine IF I would need chemo. It came back super high, 63! Doctor was surprised so high, although he felt I would need chemo. I’m E positive, 100%.
Best wishes to you all as you go thru this journey, I’m right behind you.
Debbie
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Unbreakable. I am glad you are feeling good. I hope you keep those SEs away!
Sugarcactus. Good luck today. I hope it goes well for you. I only cooled my hands and feet. Not my head. I went to the bathroom before each bag. Just took everything off and back on quickly. The machine had to be plugged in, so back to the chair. But mine had massagers- so score!
Sheila77. Sounds like we have similar treatment plans. I cut short last week and will buzz it when it starts to come out. My oncatype was 30.
Debbie. Welcome to the group. But I am sorry you have to be here. Good luck with your surgery tomorrow.
Pokeyspider when is your thyroid surgery? Thinking of you.
I am feeling ok today. Up at 3 thanks to the steroids but I keep telling myself they are keeping the SEs away. I am keeping up in my nausea drugs! I got out and walked and am hydrating.
I hope everyone has a good day.
Jean
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starting my AcT March 15, port in day before. I’m feeling ready to enjoy the next week and then just get to this already so it can one day be done! So helpful to hear from all of you going through it at the same time, and also keeping an eye on the feb group for one step ahead... feel well everyone, we got this!0
