Starting Chemo September 2015; join us!
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LindyC, I start on the 10th also. Good luck to you!
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Good morning ladies. Have a wonderful Sunday
Tessu I start on 9/11
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aj93, welcome to the group! I will add you to the list.
teacherhikermom, hope you are feeling better today!
Octogirl
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Ok so I'm supposed to drink alot to flush out the bad so my bladder doesn't disintegrate, but my chemo on Tuesday doesn't end until 5. Should I stay up late and drink or sleep and rot my bladder? Lmao! Omg what a friggin question to actually ask!
None of this feels real.0 -
welcome Southern Charm, putting you on the list...and if I missed anyone, please let me know!
Octogirl
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thank you for the welcome! I've read all the posts below too and just want to add making time to organize your 'stuff' is really important especially because we do not have control over how we are going to react to chemo or how it will impact our families. I am ready for my first chemo on Wed. I'm having my hair buzzed next week and have just made a couple of soft-knit sleeping /around the house caps from a pattern I found at a fabric store. It's nice and full on the top so it does not make me look like a pin head! Even though I did buy a wig (covered by my insurance!) I really love some of the scarf turban ideas I found on Youtube. I also want to look up the hat idea using the bottom of a shirt.
Focusing on putting these things and other comfort items for chemo together has helped me feel accomplish and in charge. I am also lucky to have a terrific hubby and two adults sons (who are back home for a bit) to take good care of me. They all cook and clean too!
I feel better knowing I have friends out there who understand and can share experiences. Be strong
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Southern Charm, you are going to get through this tough part. I found a terry cloth-type cap to wear when I am bald (recommended by the wig shop) which can be used to anchor a scarf and add some height. Look at some of the ideas on You-tube and you will feel better. I too thought the wig would be ugly and hot but it's cute and cool!
I too was starting to worry about the weight gain but have also heard from friends that they lost weight so you never know.
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I'm still a little sore two days after my port surgery but it's getting much better. I've slept in the recliner both nights because I sleep on my side and it hurt to lay like that. I'm hopeful I can actually sleep in bed tonight.
We have a lot of us starting chemo soon. I'm really nervous about starting chemo this week. Am I going to have an allergic reaction, what side effects am I going to get, am I going to able to keep working, what is my insurance going to cover (I didn't even check on the pet scan), on and on...... I know you all are thinking and worrying about the same things. I just want this nightmare to end!
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Bummer start to the holiday weekend! Sure hope your weekend was relaxing. Thanks for starting the Sept group, this has already been immensly helpful!
Be strong my ladies1
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Today has been a tough day and I've been in bed most of the day. I've got some serious nausea/acid reflux combined with the come down off dex (lovely energy boosting steroid), combined with soreness from nupogen. Been sleeping on and off and not eating much. Almost everything I do put in my mouth tastes somewhat dreadful. So far I have discovered the following:
Ginger ale - tastes bad
Juice - tastes bad
scrambled eggs - good
chocolate ice cream - very good taste with possible consequences later
salty foods - taste good at the time with consequences later
On the upshot, moon face has started to set in and I am less wrinkly and younger looking than I have been in several years. I will try to enjoy this for the next week before I lose all my hair.0 -
Teacherhikermom, not familiar with the moon face phenom, can you enlighten me? Sorry that it was a bad day, hoping tomorrow will be better!
and yes TwiggyOR, I am getting nervous also...
Hugs to all!
Octogirl.
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Hi all! A great place to meet and discuss a terrible disease. I start my chemo on September 9th, only a few days away. I am triple-negative and am doing ACD Dose Dense Chemo for 8 cycles, every two weeks. I have already had a lumpectomy, my left breast in July. The lump was 6cm in size, so quite large. I am a stage 2, grade 3 breast cancer. It's comforting to read posts of women that know what you are going through. Healing thoughts to everyone!
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Hi Twiggy!
Hang in there. I actually found my port insertion more uncomfortable than my lumpectomy. It settled down pretty quickly, and I am (almost) used to it. Most of the time I forget it is even there. Regarding being nervous, and not knowing what to expect with chemo - that sounds like a very normal response too. I am having my 4th dose of AC (dose dense i.e. every 2 weeks) tomorrow, and feel much more relaxed about it than previous cycles. Before my first cycle I read all sorts of blogs (and horror stories) about chemo and they scared me. Looking back on it, I wish I hadn't read them, because many of the things I was worried about simply haven't happened. No, I don't enjoy having chemo, and yes I've had some side effects, but generally they've been tolerable. Everybody experiences it differently. Ive had bad days, and lots of good days. My symptoms have varied in between each cycle, so I never really know what to expect with the next treatment. So now Ive actually stopped trying to predict what lies ahead, and just let each day unfold. Each cycle is another "box ticked". I hope you get lots of good days too!
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I started the decadron this morning and I feel just weird. I can't describe it any other way. Is this normal? The nurse said the steroids made you feel good and up, but I feel like I slammed 4 jolt colas and just took off on a boat. Lord God please help me.
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SouthernCharm...replying doesn't seem to work that way, not like facebook. No worries, we can follow easily enough. Phoenix15, I start my 1st round of 4 of AC every 2 weeks on Thursday, followed by 4 of Taxol. I'm trying not to stress over every possible side effect that may hit me. Good to hear that you've trudged through. I'm hoping for the same.
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yes, SouthernCharm, as Lindy says no matter what post you reply to, it shows at the bottom of the thread. That's ok, you can always just name the person you are replying to in your reply, and it does help me feel like we are all in this together. Looking forward to your posts. ldurham, welcome to the group and will add you to the list. AnnieB43, definitely let your team know about how the steroids make you feel. Maybe they can reduce the dose.
Hugs to all,
Octogirl
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Just checking in with everyone and seeing that you all are expressing my thoughts and feelings - so "ditto" on the being scared and worried! I read the whole description of the port placement (mine is the 17th) which was good and bad! Seems more involved and a longer day than the lumpectomy! I decided I do not need to be a hero so any twilight drugs will be welcomed!
Chemo starts the 21st and in many ways this all seems like overkill - just for a tiny lump any a few itty bitty lymph nodes!
All the best to all of you in this Labor Day week! It's good to know you are all out there fighting the fight! Hang in there - I'm coming soon
(Octogirl/Teacherhikermom - I too am hoping for the moon face phenomenon - I assume that's where the steroids fill in the wrinkles on our face and us older gals look younger! Gotta embrace anything good that we can!)
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For those of you with upcoming port surgery:
I had mine on last Friday, the 7th. Against my surgeon's wishes i opted for conscious sedation (propofol) because general anesthesia makes me nauseous and i have a long drive home. I have a vague memory of moving to the operating bed and then I'm in the recovery room. The best part was i did not get nauseous. The nurse anesthetist said they did them like that all the time where she came from. I will say though that i would have chosen general anesthesia if not for the nausea.
I took pain meds off and on thru last night. Today i just feel like i have a bad bruise. For me i would say it's a little easier than the lympectomy and WAY easier than the lymph node surgery. I'm still hurting from the lymph node operation three weeks ago.
Good luck to everyone. Oh, and i used an ice pack regularly.
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Hello all. I had my first treatment on August 31. Hope it's okay to join the September group:)
My SE's were shakiness, heartburn and acidity, face flushing (lasted a few hours), slight nausea(lasted seconds), malaise, slight achy joints, headache( lasted hours), nasal drip(slight difficulty in swallowing and ears popping). Whew. Seems like a lot right? The good news is that they were all MANAGEABLE by prescription and over the counter meds!!
Here are my tips on what I think helped and is helping me on my first round of treatment.
1. Take the SE meds prescribed and as needed.
Nausea - I took my Zofran as SOON as I felt nauseous (had to remember my first trimester days. Wink) I ended up just taking one a day for the first few days.
Bone pain/skin reaction to shot from Leukine shot( wbc booster)- I took Claritin and Tylenol(1000mg) before the shot, as prescribed. Continue Tylenol every 6 hrs as needed. In my case I just took one more (500 mg) that night and slept it off.
Heartburn - Prilosec (2 tablets) Had to call my onco after hours because it was getting intense but had immediate relief (as my onco said!!) after taking the meds
Nasal drip- because of the difficulty in swallowing, had to call my onco, to rule out allergic reaction. Was prescribed benadryl first. And then Claritin, Cepacol, Salt water rinse. I just continued my daily Claritin I was taking anyway for my wbc shots.
2. Speak up and ask for any future se's or are currently experiencing.
Constipation- I asked if I should start taking a stool softener. I was advised to wait a few days(hydrate, be active, eat fiber) and give my system a chance. It may cause diarrhea if taken too soon. I followed their advice and have been regular.
Mouth sores- asked the nurse if i needed to chew ice or rinse in salt water, to prevent them. She said we will prescribe meds IF you get them.
3. Don't hesitate to call the onco anytime (nurses told me that:)) and suffer unecessarily.
She told me about a patient who had one mouth sore over the weekend and waited to call on Monday. They could have prescribed something to relieve her had she called!
In my case, I called my onco after hours, twice. Day 1( Chemo day) when i started to have difficulty swallowing. I wanted to rule out allergic reaction. Day 3 intensifying heartburn. Both days i experienced my symptoms early evening so I did not hesitate calling. I was thanking my onco repeatedly for calling back quickly and apologizing for the call. My onco has been sweet and caring from the beginning anyway.;)
4. HYDRATE. I am a water drinker anyway but was getting tired of it so I would add soups, watermelon.
5. BE ACTIVE. I would walk 30 minutes a day. Sometimes break it up in 5 or 10 minute walks. I felt better too after the walks. It helped me to imagine my blood pumping and moving the meds out of my system.
6. EAT. I lost my appetite on day1-3 but have regained it. Eating lesser though and taste buds are highly sensitive. Too sweet or too salty.
Hope this helps.
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Hi. Just joined a group! Just had my first chemo last Friday, 9/4. This is the first round of AC (out of 4 every other week followed by T every week for 12 weeks). Has anyone going through side effects? I got completely wiped out on that afternoon I got the treatment, and still very tough to get around. Nausea got better but feel the entire body function is down by 50%. I heard the down days usually start a few days later so I wasn't expecting this (though I did hear everyone reacts differently). How is everyone's reaction after AC? I heard AC is harder than T, but would like to hope it gets a little better...this is just the first round
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Day four and I am totally wiped out. Nausea/acid tummy is better but I am too tired to watch tv, read book, eat or drink. DH is encouraging drinking and offering food but I am too tired to even turn over in bed. Mostly just laying here with eyes closed.
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AG3 and Amberbaum19: welcome to the group and I've added you both to the list. All welcome, including late (or even early :-)) August sisters! And thanks for the tips and updating us on how you are doing, it really helps those of us who haven't started yet.
Teacherhikermom, sorry you aren't feeling better. Is it time to have DH call the MO?
I finished my preparation shopping today and feeling anxious. Did go for a long walk, and am now indulging in eating spaghetti. ice cream may follow. yes, yes I know, comfort eating is not the best, but it is totally a thing I do :-)
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My first chemo has been postponed until the 30th so I can have one more happy birthday before then and not be sick. I am getting my port put in on Tuesday, my mom's birthday. There is something so sad about putting on your wedding dress to trace the neckline so they can hide the port scar behind it. I hate this. I hate that this is what my life has become.
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tshire it is indeed sad, however we are glad you are doing well, and able to experience a wedding.
We are routing for all of you! 0 -
It starts tomorrow. IV no port. Steroids make me feel like poo. My bag is packed. I cut my hair. My mom is watching the kids. My husband is taking me. There's just no way I can be any more prepared, but I feel like I'm on the eve of battle. I'm just going to watch movies and veg out the rest of tonight. Clean sheets, snack supply, comfy chair, slippers...I'm all set. Tomorrow at 1. I'm going to journal how the meds make me feel and any side effects. I'll post when I can if y'all think it might help those coming up behind.
Hugs to everyone on the brink and for those feeling poorly. Blessings on us all
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Octogirl - thanks for adding us on the Sep list and go ahead and indulge:) appetite goes up and down during treatment.
teacherhikermom - day 1-4 were hardest. It will get better. Hydrate and move as much when you can to get the meds moving out of your system.
tshire- big hug to you. Soon you'll leave this all behind and have lots of wonderful wedding memories:)
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For those starting treatment this week wishing you an easy infusion and minimal SE's. I had my first AC Wednesday and feel a bit better each day. The hardest has been the bone pain from the neulesta shot (even with Claritin and Tylenol) and the constipation (ugh).I learned quickly to take each day as it comes and not to panick over posts I read with everyone else's side effects. Everyone's cancer, treatment, and side effects are different. We can do this. It's gonna suck for awhile but it's gonna be alright.
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Octogirl - thanks for adding us on the Sep list and go ahead and indulge:) appetite goes up and down during treatment.
teacherhikermom - day 1-4 were hardest. It will get better. Hydrate and move as much when you can to get the meds moving out of your system.
tshire- big hug to you. Cancer sucks but we have to fight and soon you'll leave this all behind and have lots of wonderful wedding memories:)
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Shopgal2- our first infusions were days apart. Mine was on Monday.and TC and your last post echoed my sentiments exactly girl!
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AnnieB positive thoughts and vibes, will be thinking about you tomorrow. U r not alone,
Southerncharm doing chemo before surgery too, not because it is too big but becose you can actually have a 100% response to chemo and the tumor could just melt away
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