Who is starting chemo in September 2016?
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Well, AC infusion #1 done! Had a major problem as soon as I got there though. They took me back to draw labs from the port. This is the first time it was accessed. They poked me 4 or 5 times and couldn't get it to go into the port. Called the Dr. in and she said that the port had flipped over at some point and that it would be a surgical procedure to fix it. I had to go see the surgeon immediately. He was actually able to flip it back over externally and I didn't need surgery. It wasn't the most comfortable process, but at least it wasn't surgery. Made me an hour and a half late for the infusion though. Everything from there went smoothly and quickly. Start to finish was a little less than 3 hours. I was getting a little light headed towards the end of the Cytoxan, which I was told to expect but otherwise felt fine. Husband was with me, but I drove home, then went to pick up the kids from school. Still feeling good, maybe a little headache (could be leftover from the migraine yesterday) and tired from very little sleep last night. No nausea at all. I feel like I'm sitting here waiting for the bomb to drop as far as side effects. Hopefully not. Not really hungry at the moment but they gave me a huge sandwich for lunch (hubby ate half of it) and I've been drinking LOTS of water. Except for the port problem, it seemed like an uneventful day. Came home to a package on my doorstep. It was a book someone sent me called I'd Rather Do Chemo Than Clean Out the Garage. Looks like a touch of humor on a serious subject. Maybe there is a lighter side to this after all. I'll check it out. Will keep you posted as things progress. Hopefully they won't.
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seq24 I wondered how it went for you. Glad that so far (knock on wood). Smooth sailing here on out. Did you get to do Neulasta
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Makeiki3 yes I have entertained the thought of tattooing over my scars. That actually is what me ok with having the mastectomy. I have NEVER wanted a tattoo, ever, but for some reason I'm good with the scar tattoo. If I get one I want it to be gerber daisies. My father died from cancer 5 years ago and I brought home a vase of gerber daisies from the funeral. They were my inspiration for my wedding invitations that I made. I think a Gerber daisy tattoo will be a memorial for my father and a celebration for my marriage and will always be with me.
On a health note, feeling good today. Bone pain in the middle of the night last night but nothing that ibuprofen couldn't take care of.
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Oh my seq24, flipped port? How the heck did you manage that? Glad it was an easy remedy. Keep on drinking the water! You will be grateful! Hope the rest of the night goes well. It was the next 2-3 days that I felt most effected and it was a fog and inability to focus. Day 4 back to normal since then.
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Ware-I was kind of (well not kind of I WAS) freaking out over the port thing. 2 different nurses tried to access it. The numbing cream had worn off by then. They finally called the doctor in and she said that it had flipped upside down and the side that was up was a hard metal piece, but doesn't know how it happened. I've never seen so many people scrambling at once. Everyone was on the phone talking to someone different and they sent me to the waiting room. They finally came out and said to get to the surgeons office right away. They said it was urgent and would likely require me having surgery, right then and there. That scared me a lot! Surgeons office is in the same building. He took one look at it and said "yep, its flipped alright". He was pressing around on it and finally said "you'll feel some discomfort, kind of like having a baby turned if they are breech" Then it was total panic because I had that happen and that was the worst pain and a very horrible experience I ever had! And it didn't work. Baby was still breech and I had to have C section. But he was able to get the port turned back over and it was uncomfortable but not terribly painful though. I'll probably have some bruising but at least I didn't have to have surgery.
Still feeling ok, headache is almost gone and still drinking lots of water. I'm probably close to 4 qts today. I sure am hoping to have the same results in the next few days as you! How many infusions have you had?
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Seq24 I've only had 1 of 8. Every two weeks so I will go on Thursday again. Nurse said the other day that I should expect the same SE that I had after the first with maybe more fatigue. I'll take it cause not too bad.
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hi again ladies from this sept 15 gal. From the last few posts I've read you all are doing the same as my group last year . You are handling everything that comes at you just fine and it makes me proud to read how you've already bonded.
For those having trouble drinking water try watered down grape juice or brewed iced tea. For nausea try animal crackers which are dry & just slightly sweet. Or even goldfish crackers. When I was sick I ate small meals or snacks several times a day. A meal was crackers and cheese with a small piece of fruit or pretzels and hummus. My go to after chemo infusions was egg & avocado on toast or noodles & cheese. The next day I usually had salmon for protein. And yes even though you may be nauseous try to eat as your stomach will tell you went it's hungry and eating helps nausea.
Also try to rinse several times a day with baking soda rinse. I used Biotene in the morning and nite and baking soda during the day I kept a prepared bottle of the baking soda rinse in my bathroom and used it frequently.
For eyebrows do not worry ladies they thin during treatment but mine didn't fall out until right after completing chemo. I had to start to pencil them in during DD taxol. The last eyebrow hair fell out a week after chemo and by then I had tiny brow stubble poking thru. As for lashes mine left after my 4th ac chemo. I just used eyeliner. They grew back right after chemo about month later. I just used eyeliner and still do instead of mascara.
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Day 10 after first AC infusion - don't get cocky
Keep up with the side effect remedies that you find helpful. I don't have any mouth sores but every time I slack off on using the salt/baking soda water rinses, my throat starts getting sore. Other than that, I'm symptom free and eating well while the eating is good. Trying not to lose any weight on chemo. Been very busy this week. Having no issues continuing to work full time so far but understand that my journey is still early. Have in-laws visiting this weekend so no rest in sight.
Can we talk pets?
I'd like to hear any advice/guidance that you've gotten from your MOs or chemo nurses on caring for pets. On my first consult, my MO asked about pets and I told him that I had a dog, two cats, two leopard geckos, and aquarium fish. Here's what he had to say.
Dog - No problem. I could care for him and let him lick me.
Cats - I'd have to get rid of the cats. I simply raised an eyebrow and looked at him and he admitted that he just didn't like cats. He then added that I shouldn't clean the litter box.
Geckos - Wash, wash, wash my hands after caring for the lizards.
Fish - No guidance provided.
Birds - I forgot to mention to him that I feed wild birds. Not sure if I should take extra precautions with that.
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seq 24 - Ack! I can't even imagine how my port would flip over. I keep touching it and wiggling it and there just isn't room in there for it to start flipping. Glad it was a relatively easy fix for the surgeon to correct it and hope very strongly that it stays oriented correctly for you going forward. I did think about you today and am glad to hear that it went fairly smoothly after all the port excitement. Keep posting. . .I want to hear that it just isn't as bad as you were worried about. I was told and found it to be true that I'd feel ok the rest of the first day and the following day. . .starting to feel the effects on day 3 and 4, and start feeling better and better starting on day 5. Hang in there!
Shopgal2 - It is so awesome that you are posting on this thread and encouraging all of us. It's hard to see the other side when we are all early in our chemo treatments.
Ware - I'm currently not planning on any reconstruction but am toying with the idea of scar tattoos at some point in the future. Never wanted a tattoo before either. My 16-year-old daughter thinks I should get some temporary henna tattoos on my scalp once all the hair falls out. I'd have to check with my MO whether henna is ok or not but I'm considering it. Could be fun and could always be covered as well.
Everyone - So sorry but it is clear that I won't be able to keep up with all the happenings on this thread. I'll do my best to keep my reading up to date but it is moving so fast I won't be able to respond to everyone.
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I'm finally in countdown mode! Muggascan done. Pixie haircut done, still need to send the donation out though. (Beauty school haircut for $12 but it took 2.5 hours. Think I terrified the poor girl saying I wanted it gone...can't imagine what would have happened if if I told her the complete reason why.) Port placed and chemo taught. Still wish I was taught on the port-is it really supposed to stick out? Surgeon said before starting that It won't be seen and will be under the skin so I can forget it's there. But there's a little bump under the skin that wasn't there before. Just weird. My office's infusion room is huge, with 20 chairs my husband counted, and no privacy. A few had regular chairs next to them. The nurse pointed out the water and snacks they have- bags of chips. I'll be bringing my own snacks. Now I have to wait another few days. I start Tuesday morning. After sitting that long for a haircut I should be able to handle the infusion ;)But am glad to have progress this week.
Leydi- hadn't been told anything about pets. Switch out the gecko for a turtle and birds for hamsters, just one cat and we match! I remember when I was pregnant doctors saying not to personally clean the litter box and have someone else do it but I can't remember why - the dust maybe? I'm going to use this reason and get my daughter to do it, it's her cat that she's supposed to be caring for anyway! And normal hygiene for turtles is lots of hand washing- not sure if it relates to gecko health as well.
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Leydi I have 4 dogs and three cats. All in door. My MO said to have somebody else do the litter boxes and don't let the cats scratch me. Other than that they are ok. Cat poo has toxins that are not safe for you when you're pregnant. I assume the same is true with weakened immune system. no argument from me to be banned from litter box duty, except it is now my 17 year old daughter's duty and she thinks scooping twice a day is over kill so the cats are not getting momma's proper cleaning. Sorry cats. Sorry people who walk in my house and it smells like cat litter.
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Though my menagerie used to included nearly everything from horses to hedgehogs, I'm down to a goldfish pond and one evil dog that only loves me. I can't believe that I've turned into one of those little old ladies with the nippy dog that nobody understands. She's my heating pad, my exercise inducer and my biggest comfort when I'm down.
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Day 2 after first AC. Feeling good. Slept last night and headache was gone this morning. My only complaint is that I am kind of shaky feeling. I'm guessing its from the steroids. Even some of that went away after I ate this mornig. No nausea, but took meds last night and this morning just to avoid it. Hopefully the Sea Bands my daughter insisted I wear are working. Neulasta pod is scheduled to go off about 4 this afternoon. Worried about side effects from that because from what I've read the bone pain can be bad. Nothing much else to report. So far so good. Dr. said tomorrow and Monday would be the worst if anything is going to happen.
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Hello everyone. Just thought I would check in. I haven't posted much but I read most every post. I had my port put in on Thursday without any problems and pretty much slept on the couch all day after that. First chemo session was yesterday and other than the 4 hour wait on paperwork (due to the fact the center never sent it to my insurance...don't get me started!) it went off with no further snafus! I am doing Carboplatin and Gemzar and other than a slight under the weather feeling I am doing pretty good. Almost nine years ago I did dose dense ACT so I am hoping things seem a bit easier this time..though I am ALSO nine years older.
I have read mixed reviews on hair loss with this combo so I am going to go ahead and count on it and be happily surprised if it stays albeit thinner (its thick as it is so we'll just see). I shaved it off the first time around, bought an expensive wig that got worn twice and pretty much lived in hats and bandanas. Today I ordered some human hair bangs and a couple of ruffled snood/bandana pull ons that look cute and will go with those if the hair decides it wants to tuck tail and run hide.
I will get just the Gemzar this Thursday or Friday and then have 2 weeks off and then start the cycle all over again. I plan to return to work on Monday with a modified job and they are being great about it...for now anyway...I hope that continues.
I am taking my Zofran pretty much every 6 hours for these next 3 days because I don't want to test the waters. I did an Emend tri pack for the three days after chemo last time with the ACT and never threw up once....I'd like it to be the same way this time.
I had a consult with a plastic surgeon and will have one more with another to decide my plan of action. I need to do some research on implant VS diep reconstruction. I would have to drive an hour 1/2 to 2 hours if I want diep as they are not done any closer than that for me. Can anyone chime in on this if you have already had surgery?
Going to take a nice shower and run a couple of errands then take it easy for the rest of the weekend. I have been told day 3 may be a sort of crashing day for me so I would like to keep up on the small things I feel comfortable doing until that happens.
Wishing all of you great days ahead and strength to get through the not so great ones! Hugs all around!
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Good morning ladies!
Day 4- pain and more pain. Motrin isn't even taking the edge off of the bone pain. I feel like wolverine getting all of that metal pumped into him at the moment. No nausea still, upset stomach continues. I slept through most of yesterday no matter how hard I tried to stay awake. Didn't sleep so well last night because of bone pain, but thankfully remembered I had forgotten my claritin. After taking that it eased off some, but this morning I am in agony. My sis-in law said this lasts about three days. Does anyone have any insight on that?
Very happy to see that you are all doing well. Sorry to hear about your port Seq24, glad they fixed it and everything went well. Hang in there ladies! I have three dogs, two german shepherds and a shiba inu. My Gunner (GS) knows something is wrong and just wants to cuddle me.
Today is my husband's birthday, tomorrow is my daughter's 21st birthday so we have a get together planned. I'm not so sure that is a good idea at the moment. I'm just praying for strength and a way to cope with the pain.
Stay strong, stay positive, and keep fighting!
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Seq....I had major problems yesterday with my dayum port.....went to get labs done before infusion and the lab tech couldn't access the port...they tried 3 times and each time that ish hurt...I was getting pissed off....they said they think my port flipped...I was sent upstairs to talk to my MO...by the time I got up there I was having a melt down...I was so pissed off...the nurses tried to take my blood pressure it was high as usual.. asking dumb questions ..are you on bp meds..i said smartly is it in my dayum chart..they couldn't find a pulse on me with that stupid finger thing..tried it 5 times and still couldn't find a pulse..i finally had it with that ish too..i got up and said where is the bathroom at...went to bathroom and just cried my lil heart out..i was so angry....I left the bathroom went to talk to my MO and I let him have it...I told him I am sick of coming here and this dayum port won't work...I am sick of it!! and I already don't want to be here ..but when I do come I want to get the ish done and go home with no problems...after I gave him a piece of my mind..i finally calmed down and felt better..he apologized and said he understands and he is going to get this fixed immediately...he said he is going to schedule me to get a new port put in by a different surgeon and it will be put in correctly and it will work correctly going forward and he is so so sorry...so my infusion was canceled yesterday..i have to now get my port replaced on Monday and do chemo this Friday coming.
Please pray i don't blow that dang place up...hahaha
Happy Weekend Folks
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Do these ports really "flip" or are they just put in wrong? I cannot see these things flipping!
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Nayda--Oh no! Not you too! I was told yesterday immediately after they couldn't access the port that it had to be fixed surgically. I was in a state of panic! My MO even came in and looked at it and said she agreed that it had flipped. They sent me to the surgeon right away and all I could think was here I go back into surgery. He was able to manipulate it around with his hands (OUCH!!!) and was able to get it turned back over. He said that it should stay in place now and not sure why it flipped in the first place. I sleep on that side so it could have happened then, I'm keeping a close eye on it. He said that it is rare for this to happen and if it does it again he will have to go in there and suture it in. Hoping it doesn't come to that! I know my port was put in correctly to start with as they did an xray to verify it before I left the hospital after surgery. Not sure what happened except it probably slipped over in my sleep.
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Well they did the xray on me also..so it was put in correctly the effer just don't work...i think they gave me a refurbished one..hahaha
i can laugh now..but yesterday i was too pissed....
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JIff...they really flip...they nurses tried to explain it to me on how they flip...but i was too pissed to listen.
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Oh, I do remember now I asked what this little bump was near my port and they said that is where they put a small suture to keep it in place. Guess I am glad they did that. They did ask which side I sleep on most and it was that side. All makes sense now
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Very scary to have those issues with the port. Someone did mention in the process of getting mine that there could be cases where they flip, it was hard to visualize how that would work. Mine has healed up pretty well and no longer hurts, but I do have quite a noticeable bump with it which I don't love. It will be a long 1-2 years with it in there, I have a feeling.
ACS74, had to smile at your Wolverine comparison. My first weekend after treatment, I found myself thinking I felt like Gollum with just generally feeling drained, knowing my hair was gonna fall out, weird mouth sensations, and the rest starting to chipping away at me from the insides. Between the two, I'd rather be a Wolverine I think. Maybe I will work on that image for the next time which is coming up soon.
Best wishes to all
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good luck to everyone! I'm starting chemo Tuesday. Anybody starting their treatment with chemo and targeted therapies before surgery? I'm truly a newbie
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Sr2295--hello and welcome to the group. This is truly the greatest source of support and information. I started chemo on Friday. So far so good. Just a little tired, but that's probably from some of the nausea meds. Please keep us posted on how it is going for you. Best wishes!
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Sr2295 Welcome, I am new too. I started chemo on Thursday and I am doing chemo prior to surgery with targeted therapies.
I am on Day 3 and my day has been busy but I have had a couple of naps. My tummy is queasy and I am a bit achy but otherwise I am ok. I wish I had the Zofran but hopefully by Monday and if I don't need it by then, I will have it for next time.
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great to hear from you AngelaKS. I'm starting the same combo you have listed. So glad to hear that you're not suffering to badly from SE
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Sr225, yes, there are several of us who appear to be on the HER2+ neoadjuvant program. Mine is the same as AngelaKS, I'm about to start the second round out of six next week. In the first round, I found week one a little rough but manageable. Middle week was ~ok but improving, the past few days I've felt very good all things considered. (Except the hair lol)
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ACS74... Hang in there ..I hope the pain passes quickly.
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you are doing herceptin/Perjeta at the same time as your chemo??
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