Starting Chemo June 2014
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Hello everyone
I will have my first chemo on Thursday! Getting the Muga scan on Tuesday, I guess they do the Herceptin the same day as chemo !? Not sure what chemo I will be getting yet, just know it will be 6 rounds and every three weeks. Considering when to cut my hair.. Dr said it will fall out two to three weeks after the first treatment. I think I will get it cut next week .....maybe.
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Home - I would get sick half the time from the recycled air on the plane before all this, and my immune system has always been pretty good. I see you're in Atlanta, assuming you would be flying out of there - it's not just the plane you have to worry about. All the thousands of people in the world's busiest airport and all their germs to contend with too. I would definitely check with your onc first
JDMac - we have the same start date! I'm getting my hair cut shorter, but not buzzed, on Wednesday night. Know I'm going to cry just getting it chopped. Can't imagine how I'm going to be when it starts to go!
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Chemo starts this morning. Wish me luck.
About the plane ride. My oncologist said absolutely no plane rides until after treatment because of the recycled air in the plane. Is it too far to drive?
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Good luck, CC! Let us know how it goes. A few of us will be joining you later this week.
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First day went good with no problems. Only small issue I had was with my sinisus. Made my nose run and I kept sneezing. Other than that I feel good.
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I had chemo class this afternoon. Not sure I was told anything that I hadn't already learned from lurking around here the last few weeks since I was diagnosed. I have both a PET and an Echo scheduled for tomorrow. The PET scares me... I'm hoping the random pains I'm feeling/noticing in my back are just the same normal pains I've always had and aren't mets.
Glad to hear your first treatment went well, CC.
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I'm joining in the hopes I start chemo this week. I haven't seen the oncologist yet, that's tomorrow. I did read and article saying that chemo should be started within 30 days of surgery for the best outcomes and I am day 28 on Wednesday. I hope it happens this week. I never thought I would be saying "I hope I get chemo this week"!
I feel like I've already had my chemo teach as I met up with my friends aunt that works at the cancer clinic. She gave me the unfiltered version of what for expect, type of therapy, etc. I already knew most of the information she gave me so feeling good about that. I know I need A/C and T, just not sure if dose dense or not. How do they determine that?
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Tammy,
At 35... I'm guessing dense dose. They'll pull out all the stops.
Cc, I'm joining you tomorrow! Hopefully I do as well as you!
I have to say, I was impressed I got a call from the nurse practitioner tonight to see if I had any questions and ask if I was nervous. I did ask her about the Claritan for the Neulasta shot. She said no conclusive studies have been done but it wouldn't hurt. She recommended taking the first one the day of chemo and then taking it for 6 days. She said 25 percent of Neulasta patients experience bone pain and some swear by Claritan. It seems they experience the most pain on day 4 or 5.
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I took Claritin for the Neulasta shot the day of and for 3 days after. I didn't have any bone pain at all. My biggest problem was coming off the steroid. It made me really anxious for a few days. Nurse says that was normal.
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Had appt with oncologist this morning. Talked about the first miserable week of AC. He assured me it gets easier and the first AC is the hardest to deal with. He told me to forget about what I went thru with TCH that this is very very different.
Some oncologists do not believe that clariten helps, but I've been down this road before and I have to say it does help. This time I woke up at 4 am on day 4 thinking I was having a heart attack, the chest pain was unbelievable. But it didn't last long, about an hour later I was back asleep as if nothing happened. I find the sternum hurts more than any of the other bones. But everyone is different.
I have no issues with the steroids at this time. But I do take avastin to help me sleep at night and I don't take it too late in the day. I basically take it with dinner so I have time for it to wear off a bit before bedtime.
Islandmama, how do you know you need AC and T?
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basia
It's the standard cocktail for triple negative
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Tammy, I just turned 36 in April, and I'm also triple neg. I'm doing neoadjuvant dose dense A/C and dose dense Taxol, too.
I went to Walgreens tonight and stocked up on all the upcoming necessities. My cart was definitely bi-polar - Senekot if I get stopped up, Immodium if the flood gates open, etc. Luckily I'm a couponer, so the contents of my cart didn't shock the cashiers who are used to my craziness.
Since I like to be prepared, does anyone know if the magic mouthwash (BenadrylMaalox) can be made with other substitutes? Maalox has been off the shelves for about 2 years now, due to the Novartis recall. Will Mylanta or Milk of Magnesia and liquid Benadryl work just as well?
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thanks alldont thing she will be travelling , as she doesnt want to get sick .. and we want to stay on schedulle for the chemo since our son gets married in the fall .Although the oncologist said medically it was fine to go just before the next chemo. Almost 3 weeks since the first treatment .
Her oncologist also said that studies are now showing , TC is just as good without Adriamycin .. probably some personal preference and also based upon Stage, age and other factors .
I just got an email from my wife apologizing for her hair that started coming out today .. day #14 .. and it broke my heart !
3 more cycles to go , and hopefully will get this behind us !
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you know we were watching the news last night and we saw Jeniffer Griffin on Fox News
She had a 9 cm tumor triple negative , Stage 3.. and looked terrific .. healthy .. doing great!
She was diagnosed when she was nursing her last child abour 4-5 years ago !!
This is a beast .. and we must all fight it , until they find a cure .
I and my 3 sons will run the NY Marathon for a brast cancer organization and in this way show our support for my wife and all of YOU brave women !
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Starting chemo next Friday: TC x 4
Will try the Claritin before Neulasta.
Good luck to your wife Homehelp. That's wonderful that your family will be running the marathon in support of breast cancer.
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Day 16 for me and I'm losing my hair like crazy I don't know what to do. I already shaved it, but it's just shedding I drives me crazy, and it freaks me out some. Friday I'm coming up on round 2 of A/C let's hope for the best so far no shots for me. As for everyone else I wish you luck on your next round of treatment, WE WILL GET THROUGH THIS!!!!! I know it just hard.0 -
So I saw my oncologist today. Apparently my HER2 status is equivocal on my pathology report so is awaiting FISH testing.
I still will receive A/C & T. After I'm done A/C they may add in Herceptin if I'm HER2 positive.
We talked a lot about dose dense vs. regular protocol every 3 weeks and she was against dose dense. She does say the research supports dose dense and doesn't deny it but clinically dose dense isn't great. Greater risk of heart issues and risk of leukaemia. She also said that the other oncologists in the clinic feel the same way. She mentioned that a top BC oncologist also recommends regular A/C/T.
She said if she were me she would not so dose dense. I chose not to do it. Now after the fact I am worried I didn't make the right choice.
My friend works in the chemo room and has seen many ladies start on dose dense and not be able to tolerate it so end going on the regular protocol anyways. I'm hoping that the regular protocol will allow me to feel well enough to eat right and exercise.
start this week...
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laurais50 - I shaved my head too but the remaining hair was driving my nuts/painful scalp. I've been taking liquid Dove body wash on a washcloth and scrubbing in the shower - lots comes out! Gross, but it definitely feels better. Also rubbing with pure coconut oil and have a little soft nightcap to sleep in - what a hassle, but I'm glad I had my hairdresser shave most of it when it started falling out (about two weeks after first chemo)
eloqui - the Claritin is really helpful, my oncologist okayed taking another 1/2 at night as I get cranium aches that nothing else touches, usually right at bedtime. Weird, but I'll take what works.
Islaandmama2 - I had my 3rd AC today, I am on dose dense. Everyone is different - the chemo pharmacist sat down with my 15 year old daughter today and explained all the different protocols and treatment plans, and how it works on a cellular level. She is interested in medicine and got the royal treatment from all kinds of folks involved in my diagnosis and treatment today. Anyway, the chemo conversation was totally fascinating - I think you just make the best choices based on the information your providers and you have available.
Just a note from AC today - the ice cube chewing (the whole time! Freeze that mouth) during andriamycin infusion stopped the flavor/smell that lingered for four days on my first round. So, two and three rounds the ice worked thank goodness. Other than that, nothing remarkable. Oh, except the fatigue solution I got from a variety of sources, from the doctor to the nutritionist, was exercise. It's hard to go to the gym when I'm so damn exhausted! But I'm going for it, can't hurt.
Have a good week all!
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laurais50 - I shaved my head too but the remaining hair was driving me nuts/painful scalp. I've been taking liquid Dove body wash on a washcloth and scrubbing in the shower - lots comes out! Gross, but it definitely feels better. Also rubbing with pure coconut oil and have a little soft nightcap to sleep in - what a hassle, but I'm glad I had my hairdresser shave most of it when it started falling out (about two weeks after first chemo)
eloqui - the Claritin is really helpful, my oncologist okayed taking another 1/2 at night as I get cranium aches that nothing else touches, usually right at bedtime. Weird, but I'll take what works.
Islaandmama2 - I had my 3rd AC today, I am on dose dense. Everyone is different - the chemo pharmacist sat down with my 15 year old daughter today and explained all the different protocols and treatment plans, and how it works on a cellular level. She is interested in medicine and got the royal treatment from all kinds of folks involved in my diagnosis and treatment today. Anyway, the chemo conversation was totally fascinating - I think you just make the best choices based on the information your providers and you have available.
Just a note from AC today - the ice cube chewing (the whole time! Freeze that mouth) during andriamycin infusion stopped the flavor/smell that lingered for four days on my first round. So, two and three rounds the ice worked thank goodness. Other than that, nothing remarkable. Oh, except the fatigue solution I got from a variety of sources, from the doctor to the nutritionist, was exercise. It's hard to go to the gym when I'm so damn exhausted! But I'm going for it, can't hurt.
Have a good week all!
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I haven't read posts for a bit b/c I've been busy trying to get things done - my chemo starts Monday (TCH). Port goes in first thing then chemo. I've scheduled a head-shave for the following Friday. I am so appreciative of all the ideas people have posted about how to get through the different SE's. I have to say, though, not to be thick, but I clicked on the link for the head buff and have no idea how it should be worn. I know....sad. Any links with pics would be helpful! For those who have lost their hair...is the scalp really sensitive? Enough to get a protective "cap" to wear under hats and such? Your insight will be appreciated - good luck everyone!
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One more follow up appointment this morning, followed by a hair cut tonight, and then I start chemo in the morning.
S**t is getting real. And I'm getting nervous.
I feel so unprepared - the house isn't clean, I need to go to the grocery store, etc. There is so much that needs to be done, and not enough time to do it. Not that I'll ever feel ready to start treatment, per se, but I feel so behind and unprepared right now. I hate this feeling.
Hope everyone is having a great day!
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Hiking.. Here is another link on how to use the head buffs. Good luck!0 -
Kimmy no one is really prepared to start. But it feels good to get it under your belt. I started this past Thursday and have had a lot of side effects but I also just realized today I haven't been taking my steroid pills correctly. I'm hoping that has been part of my problem. Make sure someone helps you figure out your meds Lots of people will step up and help you with whatever you need done. Just tell them!
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I had my secondary ultrasound earlier today. Since I had my original imaging done outside the hospital's network, they wanted to do their own for comparison. Plus, I think it was necessary for the MRI referral. Either that, or it's just a money grab.
So, I'm laying there barley covered up waiting on the radiologist to come in and chat with me after the tech had just finished up and walked out of the room, when the freaking fire alarm starts going off. I swear, I couldn't make this crap up! I just started laughing hysterically, covered myself, and peeked out into the hallway like everyone else. Had another tech re-velcro my gown at the shoulder, just in case we needed to evacuate. Luckily, they gave the all clear about a minute later, and things got back to normal.
My radiologist spoke with my onc after looking at the images and giving me the once over herself. They still want me to have an MRI, which is now scheduled for 7:00 am tomorrow morning. Two hours before I start chemo. Awesome (yes that was sarcasm). The good news is, I asked her if my onc had the PET scan results back yet, and she said, "You didn't hear this from me, but he said they looked good." Yay!!!!! I'm so relieved!
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Kimmy, you're here...sorry. I read the other post first.
All. Went down to Philly Tuesday morning. At noon I had my blood work and vitals done. At 12:30 I met with my oncologist and the nurse practitioner who 're-explained everything and asked if I had any questions. I asked about Claritan to counteract the Neulasta and a strum I saw to prevent eyebrow and eyelash loss. They told me no studies had been done on the Claritan but hat it couldn't hurt and some people swear by it. They recommended taking one the day before Nuelasta, then one a day for 6 days. As far as the eyebrow syrem, they said I could spend the 40 bucks if I wanted to but it sou des lime bunk. They said some people never lose them and others keep them through chemo and end up losing them a month after treatment. I decided to go with the Claritan but skip the syrem that I would probably forget to apy anyway!
By 1 I was brought into suit 23 (private suites to my pleasure) for my first AC infusion. My mom got me a cup of ice chips from the machine and a coffee for herself. It became her job to make sure my ice was always full! They started me off by putting in the IV and giving me some fluids. They then gave me two different pre-chemo drugs through my IV and two pills to swallow. Next came the Adriamycin (looks lime fruit punch) which they pushed through my IV with a syringe while simultaneously giving me saline through the IV. My arm turned pink and got a little itchy but no major reactions and we all watched to be sure no angry red streaks raced up my veins. We were done in about 15 minutes. Last, a bag with the Cytoxan was hung. It took about 30 minutes to get through that. I sucked on my ice chips the entire time!
When I got to my Aunt's (which is where I stay when I go down to Philly) I took a nice red pee, then downed a Claritan and a salad from saladworks. I then went out on an hour walk around d the neighborhood. I did get to sleep, but it title after my normal bedtime and my nasal cavity felt very dry.
Woke up this morning and my pee was just a very light pink. Had some oj and took a half hour walk. Ate two English muffins and swallowed my 1st prescribed Dexamethasone. Took a shower and read for an hour or so. My next bathroom trip I had clear pee! I ate some scrambled eggs and my mother laughed because I had already eaten more that morning than I normally eat in a day. We then headed to the hospital for the Neulasta shot at 1pm. They took me back into the chemo sweet and injected less than 1cc of fluid into my belly. Any of you who have ever do e in vitro or had diabetes will think this shot is a joke!
So...I am now home and feel pretty good. I did learn that the sun hurts my eyes and I can no longer taste hot peppers or horseradish (stopped at Roy Rogers on the way back to NY). I know the next few days are supposed to be the bad ones, but I'm hoping for the best. Sorry for all the details, but I thought it might help some of the ladies starting in the next few days!
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Thanks for all those details, Radical. It's good to have an idea of what to expect.
So, I'm here. I had the port put in today, starting TC on Friday. Four doses, be given once every three weeks for twelve weeks total. I'm a little irked that my port is directly under where my bra strap goes, making even my comfy new post-mastectomy bras uncomfortable. I might have to get some strapless ones to wear until the port comes out. Humph.
I need a haircut. I feel like I'll be wasting money to get a cut now when I'm going to need a shave in a week or so, but I kind of want to look good for one moment before everything goes to hell. I've been overdue for a cut since before surgery, and just haven't been able to get to it.
Of course, my oncotype was smack in the middle of the intermediate zone so it's anybody's guess whether I'll benefit from chemo at all. But I'm only 40, and I can't leave any percentage points on the table when I walk away from this. 12 weeks of suck is worth it to improve my odds of being disease-free in 10 years.
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Nola,
Get the haircut and take a ton of pics! It's worth it to feel good!
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I'm right with you NOLA, altho about 10 years older. Started chemo on Monday, June 16. TCx4. Fortunately, it was pretty uneventful. I hope it's the same for you! I was out of there in less than 4 hours and the worst part was the first needle stick in the hand for the blood draw. I think she went all the way thru the vein the first try. 😛 No port for me, but the IV for the chemo was fine.
I was a little wired from the steroids, but had no allergic reaction or real side effects. The IV anti-nausea meds they first administered must have done the trick. I also drank a lot of water and some ginger-ale and ate oyster crackers during my infusion. The hospital where I am treated has an acupuncturist there on Mondays and she put magnets on my wrists and ears and I haven't had to take any anti-nausea meds at home. Of course I have no idea if I would become nauseated without them, so I am afraid to take them off!
I felt great on Monday and Tuesday, but a bit tired today. I didn't sleep well the nights I took steroids, so that's probably the biggest problem. I will say I have been drinking a lot of water. I have some of those big plastic cups with the lid and straw and have one with me always (have been doing that since my surgery). I really think that helps. No other side effects yet.
Thank you to all the ladies who have posted links for scarves and head coverings (and how to wear them). I have a wig appointment for June 30, but want to have something on hand before that just in case! I had my hair cut as soon as I got my Oncotype scores (23&26). I had been thinking about going short again before all of this started anyway, and I'm glad I did it now. It will be less of a mess and it won't take too long to get back to this length after treatment. I just don't want to look sick when I don't think of myself that way. At this point I am just doing what I think I need to do to give me a good chance of getting rid of this beast!
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Thanks, Radical and Grace! I'm a need to know the details kind of person, so this was extremely helpful. Thanks for telling us about the Neulasta shot Radical - I hate needles and shots, and the thought of getting one in the stomach makes me queasy. Glad to know it's not that big of a deal.
Unlike you two, I had a port put in. I have my Emla cream ready to go and will be taking a big ole bag of ice chips with me tomorrow, plus some other munchies. The BF is going to think I'm nuts.
I'll add my own experience tomorrow after I get home. Hoping mine is just an uneventful. The past 6 days have just one test after another, so I'm ready for this to get going. Besides the Neulasta shot on Friday, I'll hopefully be doc free for 7 days until I have to go back and get my blood checked. I need a break!
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Hi Girls!
I am starting my first chemo on Friday. I'm having AC every 3 weeks (4 times total) then taxol for 12 weeks every week.
I am fasting for the first treatment to see if it will help with side effects...it's not easy. I'm 11 hours in and feeling awful. This was recommended to me by a family dr/specialist although my oncologist said she thought I would feel sicker, she didn't say 'no'. I will fast 48 hrs before treatment & 24 hrs after. Anyone else heard of/tried this??
BTW...the BUFF head coverings look great..I think I will order some! Thank you to everyone who has posted your experiences so far...it can't be easy when you aren't feeling well to write posts but it does help those of us who are about to start...hope you don't mind my joining in. I am starting in 2 days and very scared...terrified actually.
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