Chemo starting June 2018
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I'm wanting mammaprint and my onc says it doesn't work for triple negative...but I have book that said it does....ask your friend what the real Andrew is if you can...thanks.
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Had my first round of A/C chemo today. Doing ok so far with just a slight headache and I'm hot!! I'm usually the one huddled under a blanket watching tv but tonight I'm hot and even feel a little clammy. Side effect or coincidence??
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Day 6 after first Taxotere and Cytoxan treatment. The adventure continues: I was kept awake last night by an itchy rash...scalp, armpits, under breasts, and nether regions. I called the onco nurse and she told me that it might be a reaction to Taxotere and to use benedryl tonight, use cortisone cream topically and prescribed an anti viral medicine called cyclovir (sp). I'm also starting a planned round of Levaquin today, a preventative antibiotic.
All these chemicals.
I'm moving slowly but was able to water my garden and prep my table that I'm going to mosaic through this chemo thing. This is by no means a vacation but having worked everyday of my adult life I'm going to attempt to make something out of this time off work. I lay around and did nothing the 5 weeks of mastectomy recovery and when I found out I then had 12 weeks of chemo (onco score 28) I decided to be more productive. I know that I am so blessed to be able to not work through this and have my job waiting for me until October. If there are no complications I might get through this financially unscathed with a beautiful patio table to boot.
Up until today every twinge or ache brought the question "is this a SE?" Now though I think on day 6 I can feel my weakness. I'm lightheaded and I'm resting after single tasks: a round of dishes, a load of laundry, feeding the dog, watering plants...
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Thank you, Domzie30218! It really makes me feel better to hear that.. I’m good with drinking water, especially during summer. Worry about fatigue, but if everyone else can do it, so do I! 😊😊
Good luck to you, and please keep me posted!
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Up early so I could eat something, now back to sleep for a while before going for port surgery this afternoon. Just want this over with.
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Had my second round of AC this past Monday. Lot of fatigue but wothout the headaches and some other disconfort I had last time. They slowed down the C drip from 30 min to 45. They also lowered my dexomethethone which also seems to have helped. Feeling grateful they heard me and adjusted. I’m still scared about this weekend because of how difficult it was after my first cycle.
I’ve been pretty pleased with Sloan Kettering. Feel well treated while there. I haven’t had surgery yet so can’t speak to that.
My hair is thinning like crazy. Just not sure the right moment to shave. I have wig and hats ready to go but scared to pull the trigger.
I feel like the most frustrating thing for me right now is not feeling like I can plan or do the things I want/need.
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Hello!
A quick question.. when I hear "steroids really help".. ( I apologize in advance, these whole chemo/cancer discussion is so new to me.) What kind of steroids are they?
I was on Prednisone once, for 6 months, and I gained 60 lbs!! I am hoping is not the same thing??
it really screwed me up, mentally, too!! Please, please tell me is not the same thing?
Hugs to you all!!
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Bobby, it’s Dexamethazone (Decadrone) for me. I think it’s pretty standard. Let’s hope you don’t react to it the same way.
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Hi fellow Juners!
I'm SO sorry for all the side effects everyone is having. I blame the taxane family (whichever you are getting). I felt like I was dying, literally) while on it 13 years ago (I did 1, felt awful, did 1 more and had to quit, was in pain and tears non-stop) and that's why I refuse to take it again. I still have neuropathy from it, although slight. and I never recovered 3 toenails. I kept all my fingernails but the toe nails really suffered.
I can't advise on anything except for supplements that help with circulation.Edited o add: 13 years ago protocol was 4 A/C every 2 weeks followed by 4 Taxol every 2 weeks. I had 2 weeks in-between my 1st and 2nd Taxol and still couldn't continue. Then went into 36 rads.
And Rach123, make sure the nurse listens to you. My C drip takes about an hour. Do they base the drip rate on weight? If it's too fast they must slow it down for you. And make sure it is notated by them (It should be?) and by yourself. Set the timer on your cell phone if you have a smart phone. I noticed they don't have a clock in my infusion rooms. Report this to your onc also. Slower only means slower it doesn't mean you're not still getting poisoned, just more slowly.
My 1st A (red devil) took 25 minutes. This last one yesterday took 17. My nurse wasn't as nice this time. I told her I take longer because I have smaller veins and this was the same way 13 years ago. It's 'supposed' to take 10 minutes. Well, perhaps I'm too small of a person to be 'average' and if the nurse has to push slower or drip the C slower/longer then we just have to speak up and advocate for our bodies. WE are the ones being poisoned, I'd think we should have a say in out treatment?
Janis
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bobby77056 I was only prescribed Decadrone for 3 days: one day before chemo, day of and the day after. It's supposed to help prevent a reaction and bolster your strength..... I think.
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Rachelcarter, how are you with your rash? I had the silmilar problem starting day 6 through 12....all the se subsided like day 13 though and feeling good since. Now I have to start all over again Wednesday:(0
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timetobebrave: I'll be right there with ya Weds. I think the most valuable lesson learned from round one is hyrdration! I'll be doing a lot more of it this time and hopefully it helps. We got this
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Joining the group! I started June 1st with T (paclitaxol) & H (Herceptin) for 12 weeks and using a Paxman Cold Cap. I just had #4 today. So far no hair loss...anywhere!
Any other T&H cold cappers out there?
After treatment #1 hadsevere muscle aches in my legs that only a warm soaking bath would help. It was a bandaid over a bullet hole though and the pain came back within minutes of getting out. I hydrated like crazy as it felt like a cross between a really bad hangover and overworked muscles from a hard run. It all subsided by day 3 as did the tingling, just as fatigue settled in. By day 4 I felt great.
Treatment #2 gave me the gift of a rash called 'acneform'. I broke out like a 13yr old in a proactive commercial from my face to my chest within 12 hours. It started out on the neck and looked like a mild flat rash and then my face started breaking out uncontrollably. Went to the Dermatologist and was prescribed Minocycline which cleared it up completely 3-4 days after starting it. Was told it was from the steroids so they lessened my dosage for treatment #4.
Treatment #3 my stomach began acting up and now taking Prilosec or Pepsid to assist. Just a lot of bloating and reflux.
Hoping for a break this week and hope everyone gets some rest this weekend!
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I had chemo for the first time 3 weeks ago, I go on Monday to have another, and so far so good with the side effects. The only ones that I notice are constipation and being tired. I think my hair might be starting to fall out because when I took a shower there was more than usual hair on my hands.
I've taken steroids before for other problems and I never had any weight gain while I was on them. I haven't taken any while having chemo so I don't know if you'd be sick or not.
I'd love to be going to chemo treatments alone but I don't think I will. Many of my family members have said that they want to come and sit there alone and my mom took family leave of absence so she'll be able to take me places, like chemo, when my husband is able to so she can sit there with me..
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kat, thanks for checking in (and glad you're feeling better!)--my oncotypeDX score came back surprisingly low at 18. surprising bc i'm an outlier both by sex and age, and also cancer is all over my dad's side of the family. my MO doesn't think i'll benefit from chemo, even w/ a positive node, so tho we showed up tuesday ready for TC, i never got hooked up.
we're not sure what my treatment will be, beyond radiation and tamoxifen, and my MO was straightforward that she and the rest of the medical posse at mayo clinic couldn't reach a consensus on my treatment. lupron was also discussed, which sounds devastating to me. we left the clinic in a funk, in spite of the great oncotype results, and my girlfriend has developed the 1000-yard stare when researching lupron. we haven't made any decisions yet.
i'm impressed with everyone's stories and continued strength here tho! it feels good not to be alone.
one last thing tonight: a few days ago this thread touched on positive (and negative) people in our lives. i absolutely believe we get to be selfish (and not just when we are battling cancer) with time spent, conversations had, and phone calls answered/ignored. we have an opportunity to shape our attitudes with who we surround ourselves with and owe it to ourselves to be the best we can be.
i think if you have friends or family or doctors who are not giving you the time, attention, and support you need, then you move on to people who do. maybe reconnect with those needy/negative family members when we're recovered. we need givers right now, not takers.
ok, off my soapbox. sorry to be MIA, my mom was in town and the last 3 days have been a rollercoaster. good night all!
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Hi everyone,
New to the forums, but I have been lurking for awhile, getting answers to some of my questions. I am 33 and was diagnosed in March. It is stage 1 IDC ER/PR+ Her2 -. My MRI made the tumor look larger, like it was stage 2, and they wanted me to consider neoadjuvant chemo, but I asked them to take it out first because I was hoping it would be favorable and I could skip chemo. I had a surgery then a re-excision in April and May. It was officially stage 1, lymph nodes clear, but my oncotype was 32, so I could not avoid chemo. I had my first dose of TC on June 13, neulasta on-body injection on June 14. Last weekend was pretty miserable with body aches, headaches, loss of appetite. I basically felt like I had the flu and a hangover at the same time and nothing could make me comfortable. Exercise was about the only thing that helped, and I have managed to keep running through this so far, even a slow 2 miles on my worst day (made me feel better for about 20 min!). Next, motrin started to bother my stomach and I switched to tylenol, then a few days of a weird throbbing pain in my abdomen and back, and now I feel pretty ok. My taste is even mostly recovered.
I am hoping the next 2 weeks will continue this way. I am definitely not looking forward to doing this 3 more times, though. It was weird to read about people's hair starting to fall out, and makes me nervous. Especially since I feel pretty good now, it seems like it won't really happen.
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Rachel,
I am one day behind you, and I'm having the same issues as you! It's like I had written your post. Thanks for the info about the cortisone cream, as I am having the same rash. I will see my onco on Monday, so I will ask about the rx.
Hope you continue to do well this next week!
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tvheaven: Wow. I can't even imagine how that must feel, even the docs don't know where to start. That seems like it would be so incredibly stressful. Good luck to you, please keep us posted!
I've seen a bunch of people mention Onco scores; I don't recall ever getting such a thing. Is that a separate test, or what? Guess I don't really need another number, just seems a little odd everyone seems to have one but me.
I'll be getting Neulasta with this treatment on Wed., Round 1 I didn't and my WBC tanked (neutrophills were 200). So I have Claritin ready and hoping for the best.
Bit sore and bruised today from port insertion yesterday but glad that's done.
Welcome to the new folks, glad you're sharing your journey.
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day 6 of cycle one of DDAC... anyone else experience a set back day 6? So tired and nausea is trying to rear its head... forced myself out walking this morning hoping it would help. Drinking massive water as wondered if not enough yesterday.
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Day 7 after 1st Taxotere and Cytoxan. The benedryl before bed and cortisone cream has cleared up my itchiness. I've slept really well the last two nights with the help of the benedryl. My only new SE is that my taste buds have gone on the fritz; everything has started to taste incredibly bitter. Not fun but manageable. Two more weeks till next infusion. Hopefully I've been through the worst. Its crazy hot outside. It was 90 degrees at 9 am this morning so I'm hiding inside. I started my mosaic yesterday drawing the pattern on the table top.
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Rachel,
That is going to look awesome! What a great therapy to have during this time. Keep posting pictures....we love to see beauty during a dark time!
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Day 6 since first TCH Infusion - so far the SEs are not too bad - my worst SE has been constipation (BAD) - I finally took some senakot last night - other that that just a bit of fatigue and Body aches - I just want theses next few months to fly by with minimal side effects!!
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Kat22, I didn't get the Neulasta shot either with my first infusion. My doc wanted to see how i did without it and my WBC tanked to 300 as well. She said definitely neulasta with my next infusion. I hope she give me the onpro so I don't have to come back the next day for it. I am planning on taking the claritin day of chemo and then for 10 days. I am not taking any chances with the bone pains! I have to say my worst SE were the rashes. I think i didn't have any other pains because i didn't get the shot last time. Keeping my fingers cross for us that claritin works!!!
I believe oncotype dx test helps determine if you will benefit doing chemo. We being HER2 positive do not take the test because we have to do it. I got my port 2 weeks before my 1st infusion. You will be uncomfortable for few days but will feel better after. Make sure you ask you doc for Lidocaine cream to put on 1 hour before the infusion so it will numb it and you won't feel a thing.
Bheg79, I am glad you are doing well. I was constipated for 3 days and then i took 2 senakot at night and 2 the next moring and by that afternoon it worked for me.
RAchelcarter35, That does look awesome! Please keep posting pictures! I am glad your rashes cleared up. I hope we don't get it again next time! My poor hairdresser had to be real careful shaving my head because i had so many rashes healing. ( My doc had given me Levofloxacin and prednisone and helped right away. )
Bobby77056, I was given prednisone 20 mg for my rashes and it helped me right away. It was only for 5 days. I only get steriods on the day of the infusion as a premed with nausea med. I know some people take it day before of and after....
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timetobebrave: how does it feel to be hairless? Now that it's getting almost to shaving time I'm getting nervous - serious identity crisis - first the breasts now the hair.
Scheduled an appointment with my hairdresser for day 12 (this Thursday) so I don't have to deal with day 14 predicted hair fall out. My stylist is going to use the one up from 0 so that there is just a little shadow. Supposedly this prevents ingrown hairs. I'm bringing in my wig and she's going to thin it and trim the bangs. Its a synthetic so she is going to show me how to dull it with dry shampoo so it looks a little more believable. Lucky for me she knows about wigs and wears them often for the fun of it. Oh to be in her shoes. I asked how much and she said she plans not to charge me. I'll tip her well. It's crazy hot here in Sacramento so I expect I'll go 'commando' mostly. The wig will just be there for those occasions when a girl has to look civilized. Maybe a baseball cap with a ponytail ?
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rachelcarter, it's ok to be bald once you get used to it. I cried when my hubby buzzed me, then again a few days later when he shaved me, because this attractive 'shadow' started falling out too and was prickling me everywhere. Now I am mostly fine with it, except when I catch my reflection. Then I am like, who the hell is that? I expect this feeling will go away eventually as well. It'll grow back, I hope
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hi june group! I had my first round out of six on TCHP on June 15 and today is the first day that I am feeling better (9 days later). The infusion was ok. I'm doing the cold capping so that gave me a pretty bad headache, but nothing too bad from the chemo drugs. I iced my hands and feet with ice packs during the taxotere and ate popsicles and so far my mouth and fingers and toes are ok.
My insurance company (anthem) would not approve the Neulasta shot, so my doc says that we will have to wait and see if my numbers drop and then they might approve it. Has anyone else had this problem? My doc says it has been happening lately with his younger patients.
The side effects: I felt trapped in a really horrible hangover! Just kind of sick inside. I started having diarrhea two days after chemo and have had it for about 6-7 days. I'm trying to manage it with immodium, but nothing is really staying in very well. I had a scary nosebleed a few nights ago and I've also broken out on my face, chest and back. Oh and I ended up getting my period a couple days after the chemo even though I had the Lupron shot, so that was fun as always :-/
I tried to go to work on Tuesday, but ended up changing back into pj's and going to bed and stayed out for the whole week.
I'm happy to report that today I feel much better! Aside from the tummy and skin issues, the sick feeling has subsided!
Now I know what to expect and that makes it much easier to handle mentally.Hope you all are feeling well.
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Hi Lulabella, I'm also cold capping and on Day 17 right now and have had my first big shed. I've spent the weekend freaking out because I just have hair falling out everywhere. I know other cold cappers have warned me that this will happen but it's quite difficult even when you've tried to mentally prepare for it. Not looking forward to my next shampoo pre-second infusion on June 28th. Like you, my insurance will also not approve Neulesta unless I "fail" at Granix. So for 10 days after chemo, I have to give myself a subcutaneous shot.
I'd love to sync up with you to see how your cold capping is going since our chemo is only a few weeks apart!
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hi Domzie...which cold caps are you using? I'm using the Penguin. I haven't had "the shed" yet (still on Day 9), but I keep getting these tingling sensations all over my scalp. Are you doing anything special when you wash your hair? My mom bought me a raincoat to use in the shower so that I can use cold water and I just turn the water on about half pressure. I diluted the shampoo in a water bottle and just kind of squirt it over my head and let it sit there for a bit.
I'm really sorry that your hair is falling out everywhere. Try not to touch it. I hope it settles down soon. I'm going to send you lots of good strong hair follicle thoughts ~~~~~~~
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lurker, first time poster. Had my 3rd round of taxol/herceptin on Friday. Feeling very lucky cos no real side effects, cept the hair started coming out yday. I'm mostly a long hair person, but I got it cut about a year ago so that makes losing it a little easier. Only thing hard for me is I'm single and in a town where I've not built any support system... I have some good friends about 100 miles away, and one has really stepped up to take me to surgeries and first chemo. Just glad to know you folks are out in cyberville sharing your stories. I get more info here than I did from the doc. I like her, but only the basic SE info was provided.
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Chemo starts tomorrow for me. I'm so nervous. 12 weeks of taxol/herceptin followed by 6 weeks of A/C. It's going to be a long road but I'm trying to stay positive !
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