Starting Chemo October 2018
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This has lots of great stats!!
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Hello October ladies, jumping in from the April group. Just wanted to say you guys are a bunch of brave women and you will tide each other to the other side. And, its doable.
Few things, 1. take your pre meds on time. Much easier to tackle the nausea and other SEs before it hits. It takes a while to settle if you are already down.
2. Make a chart of your SEs, they hit you like clockwork every week.
3. Ladies on AC and FEC, look forward to day 8, you will start feeling better around day 8.
4. Neulesta will feel like you ran into a wall. Take Claritin D before hand. Helps a lot.
5. Water, water, water
6. Taxol aches and pains. Still strugling with them or maybe its the zoladex. Epsom soaks, warm water baths, electric blankets help a lot.
7. Talk to your nurse or MO, they try to help ease the SEs as much as they can. Check out previous month’s threads. Helps a lot. Or reach out, I have found this community really helpful.
8. Baking soda mouth wash every four hours. You can alternate between Biotene and baking soda. Biotene also has a dry mouth gel. Use it at night before going to bed or just at the start of an ulcer.
9. If you have a headache during your first chemo, then ask them to slow the drip. You are going to be in for quite a while on the first day.
10. I liked food with lot of texture, did not have much sense of taste. I would like to think its getting back now that I am 7 weeks past chemo, not very sure though.
11. Use tea tree oil or vinegar mixed with water to ward off nail infections on Taxol. Protect your skin and nails from the sun. They are super sensitive on chemo. I did not have any stomach issues but quite a few ladies have had them in my group.
12. Ears might ring, vision gets blurry, eyes, mouth and skin get super dry. Use eye drops, biotene mouth wash or gel.
13. Use hand sanitizers and avoid people who are sick or large gatherings, especially if indoors.
I hope this helps someone out there. About myself, I go in for radiation on thursday. I had 4 DD AC followed by 12 weekly Taxol. I had a lumpectomy on the 6th of Sept. I am 40 and have a 6 year old. Hubby has been amazing through all this.
Lastly be kind to yourself. Take one day at a time. All the best to all of you.
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thank you Frog-on-lillypad
Shelby - what is your diagnosis? How much of your tumor is invasive? Is it hormone positive or negative? HER2 positive or negative?
Maybe there is a chance I won't need chemo (?). I'm also seeking out a 2nd opinion -- I STILL don't have a plan.
I had extensive DCIS all over the breast - the largest tumor was 5cm. The mastectomy pathology showed an invasive area only measuring 1mm (that's it!) and I thought I was free and clear but apparently this amount of microinvasion is treated and honestly I'd rather get treated than recurrence but I just want to know my recurrence risk, oncotype (oncoscore) -- I don't know any of this. Sorry to be posting about this all of the time but not knowing is driving me nuts.
Thanks all for listening
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Darlng the reason why we have these sites is so twe can talk to each other. We can post anytime we want to that is our prerogative thank God for the site and for each other :-) when I went to for my second opinion and the doctor was saying my tumor was 2.1 I had to explain to him that my MRI and show him to prove to him that the largest tumor was 1.5 and the other two combined .6 mm, making the whole tumor combined dcis as well as invasive! Have to go kids need me..hope to talk soon!
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My first treatment of Taxiol is coming up on the 12th and started to get nervous about all the possible SE as we all are. I got my port placed last Thursday. My surgeon was able to use the same area that I had my port for my melanoma treatments about. 3 years ago. One thing I hated was getting that saline taste every time the port had to be flushed out. I know that is a little thing but I hated it. Just went back to work on Monday after having a bilateral mastectomy. t My surgery was August 30th I’m really trying to I figure out what to do about my hair. I purchased a wig today and wondering if I should just go ahead and shave it now or wait until it starts coming out. My hair just thinned last time but Im expecting more this time.
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hi sister- saline taste? Ugh. I better add that to my list of things to expect. I got my port yesterday and it’s not comfortable at all. Does that pass over time? Does it get more comfortable hopefully?
I can understand nervousness. There’s so much unknown. I see you battled melanoma a few years ago. Wow, kudos to you for that.
Your bmx was 2 days after mine and I just purchased a wig. Also, I am struggling hard with the same thing as you - when to shave! My first treatment is Tuesday so I know it will shed within 2 weeks after. I may wait until it starts to shed and then clip it off. Mentally, Its like we want it to be on our terms? At least I’m weird like that.
Are you completing AC after Taxol?
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Today is day 2 after my first chemo treatment. About 3 hours after I got home from treatment I started to feel nauseous and very tired. I slept from about 8pm Monday, and then on and off all day Tuesday. I am feeling a bit better today, but still pretty weak. I got my first Neulasta shot this morning, and I’m not looking forward to those SE. I hope that maybe my chemo SE came on quickly, but most everyone I talked to said day 3 is typically the worst.
I go in for a wig consultation on Friday. I don’t know how I feel about it. Just one more way to prove to my brain that yes, this is actually happening to me.
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Hi All,
Just checking in to see how everyone is doing. I have had a good couple of days. I am still walking each day. I am hoping everyone is having little to no SE. I feel fortunate that I am just experiencing fatigue, some bone aches, and my taste buds going away.
Sending positive thoughts to all!
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Hi Ladies! I'm joining you in this October group. It's all happening much faster than I imagined and I was told yesterday that I start chemo next Tuesday.
A little about me- I live in Seattle and am a 41 single mom (who feels not a day over 30!) of a 5 year old (shared custody with her father) no history of breast cancer in my family. I had just started a new relationship and went in for a STD test - my obgyn found a lump that could be moved around. I was told it was probably nothing but a month later, here we are. Multifocal IDC (over a 8cm area) and DCIS along with at least one large mass in my lymph that biopsied as cancer. I go in for my genetics tomorrow and then bone and CT scans on Friday. I'd be lying if I said I wasn't scared to death of those tests. Up until this lump I felt super healthy, worked out aggressively, climbed mountains on the weekends - no signs of being sick! My life is dramatically different today than it was 4 weeks ago.
I'm not getting a port - the one nice thing about being a gym rat is I have great veins. silver lining I guess.
I'm doing a reverse treatment schedule and starting with dose dense taxol due to some up coming travel plans. My oncologist was nice enough to figure out a schedule so I would have "good weeks" during my trips.(Bali! I plan to find as many topless beaches as I can- final adventures of the boobs
)I've named my tumor "uncle joey" from full house. Because he's kinda weird and we need to 'cut it out" -gotta find humor it, right? I started a blog at deathtounclejoey dot com. - anyone else have a blog? I'd love to keep up with the October crew.
I'll start A/C after followed by surgery / radiation and then reconstruction.
I'll be cold capping with Paxman at my center and running around like mad trying to get all the necessary products. I have naturally frizzy hair and I'm a flat iron addict so this should be an adventure.
Anyone have any "must have" items for chemo? My center has ice gloves and blankets, etc. Now to get work and childcare sorted!
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My port really bothered me the day after the surgery but it felt much better the following day. For the most part the port didn't bother me so it does get better. Not everyone is able to taste the saline and if they do it may not bother them but I am sure not looking forward to it again. Since I'm HER2 positive my treatment plan is Taxol+Herceptin weekly for 12 weeks, Herceptin for a year and then hormonal therapy. I still can't believe that I am 44 years old and have 2 cancers and for the melanoma I was never a huge fan of the sun so that one still floors me. I think I have decided to shave my hair on the 19th. This is probably earlier then I need but I know it is going to happen and then I will have some control. Besides being nervous about all the SE I'm nervous about people seeing me in a wig. For one reason is that everyone that doesn't know i have cancer yet will since I obviously will have a wig.
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hi birdie! Welcome to the group - it’s growing which is both good and bad :-( I’m 41 as well. What a welcome to the 40s that we received, right? Lol. And I also agree with having humor. I use it often to get through.
Sister, thanks for the thoughts ahead on the port. I was in tears today from the discomfort and eventually took an Advil. I hate taking medicine for things. And my first treatment is Tuesday. Oh the irony.
Hugs to all of you ladies. Hope everyone is doing well this evening.
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Take some ginger candies with you to suck on when they start the infusion. Helped me through the infusions. This is only for people with the portacath. You dont taste anything if you get chemo through the vein.
All the best ladies
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Hey ladies
Had my first Chemo session on Monday...apart from nervousness of the unknown, it went ok. I opted for the ‘cold cap’ hoping to keep my hair....that was actually more traumatic than the chemo drugs! The first 10-20 mins were almost unbearable...with the temperature dropping to -6 degrees at its lowest! Fingers crossed it does the trick?
Came home with steroids and anti nausea drugs,managed a meal and went to bed.
Suffering with insomnia (quite normal apparently)...following day, felt awful....thank god for anti nausea drugs! Then followed a quite good day...managed to do some jobs around the house and let myself think...hey this isn’t too bad..
WRONG! Day 4....feel like I’ve been hit by a bus! No energy, nauseous, weepy, tired and just generally feeling awful! Managed a shower but that’s it, just dozed on and off all day....have read that first 5 days are the worst.....I hope so...tomorrow is my day 5!!
Appetite is poor, drinking lots and thank goodness for plain biscuits and marmite sandwiches...
How’s everyone else getting on?
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BirdieR - check out Tiffany's Twenty Terrific Tips in forum Chemotherapy-Before, During and After.
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Well, all set for tomorrow a.m. to start my chemo. Still worried these extractions causing me issues. Oh well, guess we shall see!
TLW...hope your doing well! I was all set to do the cold capping when I went in to start last week (delayed due to teeth) but decided against it due to the "pain" issue and having to stay an extra 3 hours after tx. The less I have to be at the hospital, the happier I am! Hoping I dont regret it and wish you much success with it!
Sadly...hope your feeling better today!
Annie...do you k no ow if theres a "tips" thread specifically for AC + Taxol?
Birdie...welcome to the group! We sound very similar in dx and tx and in general (well except the mountain climbing and I've got 8 years on you lol) I still feel/act like I'm in my 30's. Humor is a HUGE factor that helps me get through. I think docs and nurses look at me kinda funny sometimes. Due to scheduling my doc asked if I wanted to schedule my next appt on Thursday instead of Friday. I said "Its dense dose! That would be a day early! Wtf...u trying to kill me doc???" He laughed and said "nope, the opposite". Thank god he gets my humor. Lol
Hope everyone has a great upcoming weekend and wish me luck!
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Sadlynew2018: I started chemo on Oct. 3 and had a good experience. Today was my second full day after chemo and feeling good. I expect I may feel something more this weekend and after the Neulasta injection but thankful for every day I feel like myself! I enjoyed a long walk yesterday and today. You'll do great - let me know how it goes. Big hugs!
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BT - that’s great news! I hope to have a similar experience! I admire your motivation for a long walk. Hoping I can do the same. The unknowns are scary with SEs.
CC - good luck tomorrow! You will rock it. I’m sorry you had the extractions but it sounds like you are ready. I agree re the cold capping. I truly admire the women who can do it. I’m just not one of them. Not sure if it’s a lack of patience or the fear of watching my hair fall out. Ugh. Hope things go great tomorrow. Let us know how it goes. I’ll be a short 4 days behind you :-)
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hi Ladies. I would love to join your group. I just started chemo today. I will have 12 weeks of taxol/herceptin and then herceptin for a year and hormonal therapy. I am 44 years old and ha e 3 children. They are 16, 14 and 12. Today went well overall. No SE’s so far. I think all the premeds are keeping them at bay
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Hello sisters,
Port goes in on Wednesday, chemo begins Thursday the 11th.
It's been a whiplash inducing 2 weeks since mamo and biopsy, kind of a blur.
Like all of you, I am scared of the unknown but comforted by all the info available here.
Thank you all for sharing your experiences, it's so helpful to know what to expect.
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Naples - welcome. Glad you found this group. It's been an amazing support. First chemo down - that's great! Hope the SEs stay at a minimum. I am 41 with 3 kids as well. I started late so mine are young. Keeps me on my toes. Lol
Patrice - welcome! Whiplash inducing is right. I haven't heard that term before but it's so accurate. I start treatment 2 days before you. There is ankther member of this group that starts today. Between all of us in the group, it will be great to share stories and experiences. I had my port out in Tuesday. It was incomfortable and still it but I've heard I'll get used to it. I took Advil to ward off the uncomfortableness. Do you know what kind of treatment you will be getting?
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Hello! I got my port placed yesterday and will be starting chemo on the 11th. I am 31 and have 3 boys, age 8, 7, and 4.
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Hi, Sadlynew -
I will be receiving AC every other week for 2 months, then T weekly for 12 weeks for a total of 5 months of chemo, then surgery I am stage 3 with lymph node infiltration. PET scan showed no other metastasis thank goodness - that adventure from scan to result was the worst so far. Found myself googling any tiny twinge i felt during the time - is it a headache or brain cancer? How stange the places your panic will lead you.
Been on tamoxifen for a week as well with no side effects other than I got my period early and it came with pms(that I never had before) and some awesome cramps as well. I'm getting really tired of crying for no apparent reason. Never been an emotional kind of gal, so these random and uncontrollable tears are frustrating and often inconvenient. And I'm sure awkward for whomever happens to be with me when they hit. Like the lady who stopped to pet my dog while we were walking- "he's so handsome" me, sobbing, "I know, I love him so much" she ""ummmm...." So yeah, that's been interesting.
So glad to hear your port insertion went well, if discomfort was the worst part, that is do-able and not so scary. Truth be told, I haven't been comfortable since this crazy ride started. (except for no longer being shy about having my boobs out, I can now have an entire conversation, topless, with a medical professional and it seems normal. I'm afraid a janitor will walk into the room and I will automatically whip them out just out of habit)
It really is awesome to have a place to go where everyone can relate to the experience and share what we are facing together. I'm not as terrified as I was when first heard "chemo". It was the idea of not knowing what to expect, and this board has soothed me so much.
So, let's do this together, I'm ready to saddle up and ride!
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Patrice, I so relate to your last post. As a woman who dreaded the annual Gyno visit and practically almost had to have the paper barrier pried from my fingers due to my ideas of modesty and being private about my delicate bits, I now sense feelings in that regard seemed to have disappeared. Who on this earth hasn't seen my boobs by now. Even the guy putting my port in got a free show.
My life was a whirlwind from diagnose to start of first chemo. Our roof failing added extra spice. I just finished my first round of AC. You and I are on same chemo protocol. I am 8 days out and feeling good, waiting for counts to recover for round 2. I found for me my biggest complaint was tiredness. My biggest advise is take nausea meds at first twinge. Took mine on schedule. If compazine didn't work 20mins later I'd pop a Zofran. By day 7 I felt pep in my step again. Good luck as u start ur journey, one day at a time, one step at a time
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Hi RadagastRabbit-
I'm so glad to hear from you, since you seem to be a step ahead of me in treatment, I get to learn from your experiences! It is wonderful to hear you are feeling so good after your first treatment. I think that's the scariest part for me, getting the first one under my belt and figuring out SE's. So thank you for sharing, it truly does help.
Here's hoping we get thru this with as little misery as possible. Good luck to you as well, we are going to get thru this nonsense! I'm reminded of a line from a favorite movie, Shawshank Redemption, "...he crawled through a river of shit and came out clean on the other side" That's my plan, except I'm hoping not to crawl, but to march on, chin up and looking this particular river dead in the eye.
So let's march on, my friend!
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Patrice - I love that quote! I plan to think of it often! I will be having the same treatment as well. Many of us are in the same boat it seems, ready to battle this rocky river! I do share your feelings on the PET. From scan to results were the lowest, darkest days of my life.
Each day - welcome! Glad you joined us (although under not so good circumstances). Three kids is the real deal but they will keep us doing. How is your port doing? I’m on day 4 and it seems to be getting (a little) more comfortable (if that’s even an appropriate term to use for anything related to bc - ugh!)
Hi ragagast! So glad to hear that there is light at the end of the first treatment tunnel. You are one down and that’s great news. My treatment starts Tuesday the 9th. Fingers crossed for minimal SEs for and everyone on here!
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Patrice, girl, with that fabulous attitude I predict your about to whoop some serious cancer butt! You can do this and we will walk the road together, I'll be the guinea pig!
I wish I had your positivity in the beginning would helped so much. I was scared right up until I sat in the chair, almost had a panic attack night before. But had I known then what I do now I would of gotten a better night sleep.The very day you go through your first treatment I'll be doing my second round, almost lock step with each other. Port placement went better than I thought too. I've been thinking the worst and being surprised every time. I realized too the people giving me the chemo didn't want me to be miserable either and were ery accommodating hiding injections etc if it scared me. To give u a taste of my humor during my chemo I kept thinking of the bell biv devoe 80's hip hop song “Poison". Id sing under my breath “This crap is Poisonnnnnnnnnnn!" With couple “poison!"'s thrown in for good measure.
Sadly new- there is bright bright light. I honestly don't feel like I even had chemo. I feel great. Blood work yesterday says low white cells but they will come back up for round 2 on the 11th just have to avoid the crowds for now. You can do it! Will be thinking of u the 9th. Listen to ur body and you'll be ok!
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Afternoon Everyone.
I realized reading everyone's posts, we all are very strong women. I do believe cancer has messed with the wrong group.
When I had my first round last Friday, I wore red heels to treatment. My hubby asked why, I told him red is a power color and I am fighting this head on. Kinda like a bull in a china shop.
I have found that walking each day, even if it is only 1/2 a mile, has helped a lot. My next chemo treatment is October 18th. Believe it or not, I am looking forward to getting another round under my belt.
Hope everyone has a good weekend.
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Love hearing from all of you, starting to feel like part of a team!
It's super easy to have a good attitude at this stage in the game, I haven't started the real work yet, but I am trying to stay positive. Sometimes I feel like it's more for my loved ones so they won't freak out, know what I mean? But it helps , i don't want to get comfortable in any dark places this soon.
And thanks to Rabbit, the first song on my chemo playlist is officially going to be "Poision". Genius!!!! Now there's an idea to keep me occupied til first treatment - a chemo playlist...
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And having just read Notgivingup's post, i am inspired all over again!!!!!
A bad-assed bull in red heels who actually said she is looking forward to the next treatment, are you kidding me? That's some rockstar attitude right there!!!
Fate whispered to the warrior - "You cannot withstand the storm" She whispered back - " I am the storm"
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1 down...7 to go! All in all, not bad at all. Just a little hiccup, had to redo labs so delayed an hour and a half. My nurse wasnt the sweetest, but sometimes that's good for me anyway. I asked about a million questions "what's that?, is it gonna hurt?, will I get tired? Will I get hyper?" Pretty much took on the role of a 5 year old. Haha. At one point she said "I dont have a crystal ball". Well, guess what joanna will be getting in 2 weeks! Lol
I do feel a little dizzy/high but guessing from the steroids. Oh and the BEST news...she said she hadn't seen veins as good as mine in a LONG time. Hopefully they can handle 7 more rounds.
So happy seeing everyone on here handling it so well. Hope that's for all of us!!! I did end up having a gal sit next to me towards the end that was on the same regimen and 3rd infusion. Shes handling it VERY well so that was encouraging too!
We got this ladies!!
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