Chemo starting December 2017
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Thanks! I finished up and am back at home. I had to go buy a pill organizer to keep track of all my meds! I also have the nuelasta injector on my tummy - that’s a little weird.
Feeling a little tired and a headache but so far so good. I’m wondering about the flow of side effects and what days will be super bad, hopefully none
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Rest well, Swewing! I'm glad you are home. I'll be keeping an eye on you! I'm so curious about side effect days...Not knowing if/when I will be able to work through all of this. My first 4 cycles will be AC, so we're a bit different there, I think. I have to return the day after infusions for the injections...Is that something that you do at home?
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My first 4 cycles of chemo are AC, then I get 12 weekly of taxol. I don’t have to go in the next day for a shot, they just tape a little injector to my stomach that injects the medicine 27 hours after the chemo. It’s weird but I’m glad I don’t have to go back in!
I’m planning on working 4 hours tomorrow, I’ll let you know how that goes. Good luck with yours!
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Oh, OK Swewing.
We are on the same regimen, then. I'll be getting Herceptin with my Taxol for the 12 weeks, then Taxol will drop off and I'll continue Herceptin for the year. Good luck tomorrow! That's pretty neat about the injector.0 -
Hi Swewing,
Glad to know that you did well. I'm new to the site. And our disease look similar.
However my surgeon approached mine with a lumpectomy and ln. Day after tomorrow I'm going for chemotherapy AC+12T.
Hats off to you for the commitment to work. I plan to take 2weeks off.
Hugs,
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Hi Wooliz,
I'm nowhere less scared than you when comes to chemo. Mine was 1.5cm no lymph nodes but triple neg. The onc showed me the statistics of no chemo 10 yrs survival 86% whereas those with chemo 92%
I'm going all out, for this 6% difference. For my family and four young children.
Good luck
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Infusion 1 yesterday. It was an eight hour day. Went smoothly. Felt normal afterward. Still feel normal. Since I imagined many possible disasters before the treatment, which did not happen, I also feel relieved. Eventually, I know I will experience side effects. But now is good
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Emalyn, So glad you are feeling well today! Enjoy every moment of feeling good, right? Hugs to you!
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So about 4 hours after I was injected with AC I started feeling a worsening headache and nausea. So I took my first ant-nausea med, then 30 mins later I took another anti-nausea med, and finally about 5:00pm I took my third anti-nausea med. then I started puking 🤢 no bueno. So I called the on call dr and she said I could take more ant-nausea meds at every 3-4 hours. It was pretty rough until I fell asleep about 10, and then i slept really well, woke up at midnight for more anti-nausea meds. Then slept more. Then I woke up at 6:00am to go to work, I hoped towork 4 hours, I only made it 3 hours, then back home for a 2 hour nap. Next round of chemo, I’m taking those anti-nausea meds before I leave!
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Hi Diveslikeagirl,
My anxiety was all for naught, the surgery for the port was very quick and relatively painless. I was in a bit of a daze and asked the nurse if we were going to start the procedure soon but at that point she told me we were already finished! It does make it feel a little more real, but I'm glad to have another step crossed off the list as I make my way to beating this thing. If you are still waiting to get yours in, don't spend too much time worrying like I did. I've felt a little better after each step and hope it will be the same for the chemo - that once I understand exactly what I'm in for the rest will be a little easier to handle by being known.
The change in treatment options would make my head spin too, there is already so much to come to terms with. If you are looking for more support, Gilda's Club has a lot of resources. They are on Wells at Grand and have a number of activities and support groups. I haven't had a moment to go to the meetings yet but hope to go to their new members breakfast soon.
EJean
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So sorry Swewing! Hopefully taking them before needed next time will help. You’re a trooper to work 3 hoirs
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Hello everyone!
Sorry we are finding ourselves here I am hoping and praying everyone is doing well.
This is my first time actually writing in the forums since diagnosed 11/21/17 right before thanksgiving. I have IDC grade 3, tumor size 3.2cm. Two lymph nodes removed both were negative. Port placed in. And now just waiting and more waiting.
I wanted to see if anyone had this problem like I did.
My 1st test showed I was HER2 negative. They recommended AC+T for treatment.
2nd rest the fish anlysys or whatever it's called said it was amplified. So my new treatment was TCHP. Then when I spoke to her she I tested HER2 positive at 2.46 my onc said anything below 2.0 is negative, and since I tested slightly positive she wants now a second opinion from another specialist. Well that specialist (also an oncologist) reviewed my case the other day and said she wants the HER2 retested. She wants it done in California by some bearcats doctor in the country. I have no idea how this is and what this means for me.
My oncologist said that due to my age and being so young she wants to get the treatment just right for me. But it's been 3 weeks since diagnosed and this thing is just growing inside me, I feel like.
Did anyone have this problem? I feel so hopeless like they don't know what to do with me.
So sorry for the loooong post.
Thank you!!
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EJean, your post was very calming. After all the waiting, I'm ready to get the show on the road and as you say, finally knowing what to expect.
I will keep you in my thoughts tomorrow as you start your regimen. I believe you and I are on the same one: TCH, with the Herceptin every week in between the 3-week cycles? (then Herceptin for like 12 more 3-week cycles?) It's daunting, but as you say, we feel better once we know what we're dealing with.
Right now I'm stressing the whole hair thing. I watched the breastcancer.org YouTube video on coping with hair loss and I don't think I want to spend 1-2 days watching my hair fall out. I'm planning on shaving my head but don't know when. I'm going to assume that it will go around 2 weeks after chemo starts, so maybe I'll get it shaved on New Year's Day or the next. Then I can go to work with my new wig. It looks a lot like my current hair.
It's been very quiet here for a few days. I hope those who have started their chemo aren't having such bad SE as to keep them from posting. Maybe you're all busy with the holidays and running on fumes, and if so, I wish you strength and rest and loved ones surrounding you.
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I started chemo on 12/12. Just starting to feel better today, a little appetite and a little energy. I did go see a wig specialist and she said definitely don’t shave your head. As your hair follicles quit growing it can cause acne on your head if you shave it, at least that’s what she told me. Good luck with your treatment
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Hey everyone. I had my first treatment on Friday. Major headache Friday evening. Got up at 2 am fr a pain pill and that helped. Have been sleeping A LOT! It’s when I feel my best. Just a little queasy off and on Friday and Saturday. That part hasn’t been too bad. Neulasta shot yesterday. Felt my best this morning then within 5 minutes felt my worst. Went back to bed for 3 hours. Now just a little achy but was able to get some things done today. Slowly but surely. I’m going to try to go to work tomorrow. Hope everyone is hanging in there. Much love!
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Hi Daniz1983,
I'm pretty new to this site. I didn't even sign up for BC.ORG until two months after my diagnosis. I have an annoying pathology story. Took several weeks before I got my HER2 status: First sample was 2+ equivocal. They re-tested it with FISH analysis and it still came back equivocal. My oncologist ordered a second tissue sample and requested that the testing will be done by a different lab. She was hoping that it would come back HER2+ so they could use herceptin and do chemo first to shrink p the tumors. But it came back negative and so MO and BS decided that surgery first would be best. After surgery I asked MO if they could retest my HER2 status with the tissue samples from my surgery and they said Insurance probably would not pay for that because the 2nd lab result was considered definitive.
For anyone who's interested in my story... I feel like I need to get it off my chest tonight. I found a lump in my right breast on August 30th. I immediately went and got a mammogram and sonogram. I'm 45 years old. I was scheduled to get my first mammogram done this summer on July 11. I fell on the way to the hospital and broke my left foot. I took a wheelchair to get to the mammogram. They told me I would have to stand for the mammogram and I said I can't stand. They told me I should probably go to the ER instead. Looking back, I'm glad I didn't get my mammogram that day. My husband was out of the country for five weeks. I think it would've been devastating to have gotten this diagnosis during that time when he was away. The next day I went to a breast surgeon who biopsied my right breast and axillary gland. She sat me down and looked at the mammogram with me. She showed me thousands of white dots on the screen for my right breast ( they were only a few calcifications in the left breast and so she was not concerned with left breast) and explained that although she would have to wait for lab results to confirm, she said that it looks like cancer, and that my whole breast was filled with disease and that I would have to have a mastectomy. On September 5, she called and said that the results came back for the right breast (IDC) but not the axillary gland. She also told us that the HER2 status was equivocal and that they would have to do a FISH analysis. Three days later she told me that the results for the axillary gland had come back with the original report and that the axillary tissue sample had been mislabeled as “right breast" and that the axillary had IDC as well. This made sense to me because on the lab report there were two sets of results and they were both labeled “right breast". On Friday, September 8 I had a breast MRI and pet scan- BS called me that evening to say pet scan showed cancer in right breast and axillary gland and a spot on the abdomen and MRI had some suspicious areas in left breast and so she ordered a breast MRI biopsy. The following Tuesday I had genetic testing. On Wednesday I went in and had the MRI biopsy on my left breast. It was excruciating and scary and I almost had a panic attack I wish they had told me to take Xanax before hand. I was lying facedown with tears and snot falling directly below. I felt so humiliated. There were four people in the room with me. One of the nurses kept rubbing my back and assuring me but I was doing a great job. It seemed like I was in there forever. They took two samples. When they shot some sort of medicine in the my left breast, it went so far through that I cried out in agony; I was whimpering and shaking . I had bruising and a hardness in that spot for a month and a half. I could barely get up afterwards. The nurse had to apply deep pressure for at least 15 minutes afterwards to stop the bleeding. They put cute little pink ice packs, taped onto my breast. Then they did another mammogram. Then they took me to the biopsy room where they did an ultrasound and another tissue sample from my right breast so that they could do another HER2 test. I was pretty knocked out and exhausted. I have been in radiology for five and half hours. We went to lunch and then met with the plastic surgeon that afternoon. It was really rough day.
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Hey Laura644,
I’m so sorry to read and hear about your rough time with the biopsy and getting all the testing done. It’s sooo stressful and extremely frustrating. I loves reading your story and than you so much for sharing!!! This Tuesday it’ll be 4 weeks since I was diagnosed and still nothing. First test of the HER2 was negative then second the fish test was slightly amplified. And well now it’s being tested in California. The specialist wanted it sent here. Sooo crazy!!!
Frustrating that instance wouldn’t pay for retesting again but I am confident that they know what they are doing in the labs and have the best treatment for you.
I’m curenetly between AC+T and TCHP. Hoping i hear some news and can start something this week. After chemo will be doing a double mastectomy. This next year will be extremely rough.
When do you start chemo? Please keep in touch and share how you’re doing!!
Hugs!
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Hi ladies, I belong to July and August chemo group, I have finished chemo a little more than 5 weeks ago. Be strong and read the other threads if you have questions, many of us went through the path you are going through.
I have done AC + taxol, my SE for AC was fatigue, hair lost, constipation or diarrhea, lost appetite and on the end I had mouth sore. It is a balance act for GI issue. Taste buds will change and put some lemon in the water that will help. Make sure to drink enough water each day, it helps your GI and wash out the chemo in bladder. Also walking helps fatigue so do some exercise each day that would help. Many people complained about bone pains so that is something you need to deal with. Take Claritin for the white blood cell shot. I buzzed out my hair after AC #2, many of us rather to buzz out our hair instead of using lint roller to style our hair.
Losing hair was a big shock, not easy, but it will come back. Mine still hasn’t came back yet. In fact, o lost my eyebrows, nasal hair ..... that I lost them during taxol.
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Hello PauletteK,
What wonderful advice thank you so much for posting and all the great suggestions. Hopefully once my final tests are done i will have my treatment determined and hope to start any day as hoping for good results and not heavy side effects. I hope you’re feeling well and your hair starts growing back very soon! That’s something that I’m def not looking forward to I really don’t want to loose my hair. It’s nice to hear from other gone through this and going through it sharing their stories. Anyone doing coldcaps?
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mjb1018, Hariry, and Swewing - I’m 4x AC (dose dense) and then 12x taxol too. It’s reassuring to find others who have such a long regime. I’m 40 and my kids are 2&4. Round one was like a 4 day flu, nothing too horrible. But not even being able to sit at the table for meals was hard. Hard not to be able to be more present for my kids.
Swewing - how old are your kids? And which books were most helpful for them?
S
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Thanks Paulette for your kind words, they're encouraging. I really hope time goes faster as the frustration of being"poisoned" is just difficult. It's day 6 today and I'm still zombieing around.
Genevec, I was given a choice of whether normal AC or dose dense... I wanted to get over all of this sooner but afraid I could not handle the SE.
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Hi everyone,
After second chemo AC (dense dose , 12/14/2014) , my wife star losing her hair, I know her she is very affected, its frustrating because i can do nothing other than watching her suffering. Other than that she is doing just fine. She go to work every day.
PauletteK, what did you do to ease on you the lost of the hair. I just want help my wife any way i can.
thanks
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Geneva..4 day flu sounds about right. 😊 Monday and Tuesday were pretty good for me and Iwas able to work both days. Now, today, I'm shot! Woke up with a sore throat. No fever and I don't feel sick. I only worked a few hours then came home and slept for 3 hours. I've given myself permission to be the boss of how I feel and it lessens the stress about what I “should" be doing. My babies are grown, but still snuggle on the couch.
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Hi Diveslikeagirl,
Thanks for keeping me in your thoughts today, I made it through and have had minimal side effects. We’ll see what tomorrow brings but I’ve got high hopes. I’m on a slightly different regimen as I’m Triple positive. They’ve got me on TCHP for 6 cycles and then continuing on herceptin every 3 weeks for a year. I think the surgery will happen between those two steps. It’s a lengthy treatment but I should get the hang of it by then. I see you’re starting in a few days- strength and good luck to you. They really have got it down to the science and should be able to help ease any side effects. Don’t hesitate to express any discomfort you’re feeling. Rest and drink lots of water. I think it may be like bracing for a terrible hangover and I’ve survived those before plenty.
I bought some scarves from head coverings.com and recommend their site. They have some really nice options and I am happy with the ones I chose. I also heard shaving can cause in growns so I’m going to cut it short to let it fall out on its own in a less traumatic way. I’ve heard many say it was in the first 2-4 weeks so with my birthday approaching I think I’ll ask my husband to trim it as a gift to me. Or maybe if I think I can get a couple more weeks out of it, a professional so my hair won’t end up quite so silly looking. I agree that just leaving it to ruin on it’s own is no good. I like finding the moments where at least how I experience this is on my terms, with grace and endurance.
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I buzzed my hair since middle of August, I wore scarves during summer now I wear hats or beanies. My hair is beginning to grow after 5 weeks post, so does my eyebrows. It was tough after I buzzed my hair, honestly losing eyebrows hurt me more.
Keep in mind, move around on your bad days, exercise on your good days. Walking helps your fatigue. I had AC and I know how hard it can be. My bad days for AC was day 4 to 6. That three days I can’t even move, so I just walked around my block.
Focus on your good days, you all are tough!
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Hello Ejean,
I hope you’re doing well today and have no or minimal SE. It’s so hard with the hair. I’m really not looking forward to that. Did you get a wig by any chance? I’m thinking of getting one but don’t know what to get they have real hair now too. Thanks for sharing that site I’ve started looking for some headscarf’s that are comfortable and nice.
Paulette,
I think loosing the eyebrows and eyelashes will be hard. I’m really stressing about loosing my hair.
I finally heard back from my nurse who said that my final retesting of the HER2 came back and that doc is ruling it as negative, he’s ruling me as a tripple negative. So I’m sure my treatment will now go back to AC+T... either way it sucks I was just hoping to use the cold caps to save my hair with the TCHP but oh well can’t now. So I’ll be starting very soon.
How long after your first treatment with AC did your hair fall out? I’m tryijg to plan ahead I want to save my ponytail. (I know crazy) but my hair will probably never be this long again
Usasam I hope your wife is feeling okay and hanging in there.
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I too had a major headache after my first chemo. Well I had my 1 week post chemo appt to go over symptoms so I told my dr about the headache. I guess a small percentage of people experience a headache from the zofran anti nausea med in the iv before chemo. She is switching out that drug and hopes that will take care of it.
I also started on Pepcid for the heartburn and will continue taking the lorazepam to help me sleep. I really hate the jittery feeling from the steroids too. My worst days are days 1-4, then I started to feel better. I'm hoping that continues as it wasn't so bad. I started a countdown 3 more AC and 12 more taxol to go
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Good morning ladies! I wanted to remind you all that starting today, the (sunlight) length of each day will be longer and longer! When we (some of us) finish, daylight savings time will have kicked in and (hopefully) we'll be ready to soak up the vitamin D through our skin, not a vitamin. Here in the Midwest, these are the things we look forward to (hee).
Got my port in yesterday. A little pain in my shoulder (like I pulled a muscle) but otherwise no problems. My dear BS came in before surgery to apologize for a 1 hour+ delay in the start. Apparently, many people have scheduled elective surgeries in these last days so they can max out their flexible health spending plans. He also apologized (again) that I have to go through chemo at all. After the initial biopsy and finding no sentinel nodes involved, he had us both riding a high that I would need only radiation and long-term hormone therapy. Then the Mammaprint and post-surgery pathology reports came back and found I was high risk for recurrence, my grade went up to 3 and the HER2 came back positive, so it was not to be. All the patients he sees and operates on and he was still stressing that my plan had changed drastically. Sweet guy.
Ejean, so happy to hear your first treatment went well. I looked at headcoverings.com and agree their styles are appealing. I also found some nice hats/scarves at hatsforyou.com. I may order a couple of things from them, after doing a double-check on Amazon, who always seems to have a few offerings from every brand on the planet, and at lower prices.
Can't tell you enough what a blessing these forums are. The world we live in that only we can fully understand.
Hugs to all.
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Today is day 7 and the worst I’ve felt so far. Normal? For the first time today I had nausea and vomiting. Hopefully that’s over.
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GenevaCanadienne:I too find it reassuring to read about others going through this, seems supportive even though we are far apart! I really liked 2 books for my kids - Nowhere Hair - it’s light hearted and easy to understand. I also liked Mom and the Polka Dot Boo Boo. My kids are 5 and 8.
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