Chemo starting October 2017
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Oh Lisa, cancer certainly has made me more of a hypochondriac and less shy about body functions and the less attractive aspects of our body during all this. I was just contemplating my upcoming Monday appointment with my oncology NP and if I should mention my current issue. Lets just say yesterday I was googling rectal bleeding and dryness. Trying to find something to soothe and moisten. BTW the only thing I came up with was Butt Paste (it is a baby diaper cream) that I will pick up today. My husband is over here thinking sexy time this weekend and I am over here thinking I want no one in the region.
I have an appointment at a wig shop this morning. Hopefully I can find something I like that isn't too outrageous priced. I know they are not cheap. I have been just wearing beanies since my head was buzzed last weekend. I forgot I didn't have anything on my head on Halloween and ran out to help husband put some items in his truck. I certainly felt looked at. I said it was Halloween, I should have grabbed an umbrella. My costume would have been crazy Britney Spears. Even with my beanie or scarf, I feel looked at like I should get a t-shirt that says "Yes I have cancer" written on it.
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Thanks everyone for the support about my revolving door of thoughts re: surgery. I haven't even thought about a plastic surgeon yet. I should probably try to get ahead of it and look for some recommendations of PS's at Sloan Kettering. Today I am going to take some time to write down all my concerns and questions for my meeting with the breast surgeon tomorrow. I've already met with her twice but I feel like as I get closer the actual surgery I have more question, and my feelings about what I want/expect changes. Does anyone have any suggestions of questions I may not have thought of? My genetics show that I don't have any higher than average chance of developing a new breast cancer, but I am triple negative, so...
PauletteK - Thanks so much for the recommendation on the ice socks. I just noticed yesterday that the nail bed of my big toe is darkening. Luckily I wasn't freaked out since the oncologist told me it could happen on A/C (but little chance of it falling off.) I may bring ice packs for tomorrow's chemo.
Jennifer522 - Good luck wig shopping. It has helped me a lot emotionally to have a wig that I feel good in. I spent more than I planned - especially since my insurance kicks in nada for it - but it's worth it on the psychological front.
Speaking of hair, those of you that have had a couple of chemo sessions, is all the hair on your head gone yet? Although I buzzed mine a fair amount is still left. Far too much scalp is showing through for me to comfortably leave the house uncovered, but I like the feel of if it, sort of like velvet, so I hope that maybe it won't all fall out. In my paranoid moments it makes me worry the chemo isn't working on me, although my rational side shuts that down pretty quickly.
I have made one life decision that I can thank my cancer for. I am going to go to Overeaters Anonymous meetings. I feel completely powerless to change my eating patterns to kick sugar and simple carbs. Even though I have been implored by my oncologist, and read so much to support her opinion, I feel like I can't do it even "if my life depended on it" - which it kinda does. In the last 9 years since I've gained all this weight, I've never had a compelling enough reason to get a handle on my emotional eating. This has to be it.
Thanks everyone for listening. I hope I'm not too much of a downer. It's just that I feel like I can come here and tell the truth, not keep up the smiling, strong front I try hard to keep for the "outside" world. You guys are the best!
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Day 7 today. Almost normal? Just a tiny bit tippy and fuzzy head. I had a Vitamin C infusion today. That was interesting. Here’s hoping I continue to feel well. To the ladies in the midst of the SE’s you WILL come out the other side! 💜
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Hi ladies, just checking in. So much reading to catch up on since I posted last. I'm feeling much better this week than last. I can definitely say that my doc was right, the side effects get worse each time. I felt awful pretty much all of last week after #2 on monday and thankfully am feeling much better this week. One other thing I have really noticed is that my taste buds are wrecked. Nothing tastes the same. All my favorite foods that I used to love eating all taste like cardboard at best, and nothing at worst. Even the few halloween candies I had didn't taste great. This is going to make Thanksgiving suck big time. Turkey and all the sides are one of my favorites and chemo is just going to ruin it. On the plus side I guess, I can stand to lose some weight so here's to silver linings! Lack of taste = no holiday overeating for me :P
And speaking of hair, I posted a question in the hair hair hair thread but I'll ask here too. All my hair pretty much fell out after my first chemo so I buzzed then shaved it all off because my scalp really hurt. Now I have growth all over my head. I had #2 last monday and am wondering if your hair grows back and falls out with each treatment. Does anyone know? I finally bit the bullet and ordered two wigs online so should have them next week. I am pretty much used to having beanies on most of the time so going back to a hair look should be interesting. Oh, and OMG I am just horrified my how much of my regrowth is white. There is no salt/pepper action... it's a salt avalanche. I am really going to have to think about what to do with this hair when it starts really growing back.
Picking up on a few other topics...
YES, runny nose all the time. I still have some nose hairs, but they're not doing their job I think. I'm primarily using chapstick on my lips and the edge of my nose to keep things from hurting.
Yes, lost pretty much all of my body hair (there are random hangers on everywhere! so weird) but my eyebrows and lashes are still about half there. I hope they hang on
No, haven't noticed any changes in my fingernails or toe nails yet. I keep them polished pretty much all the time to keep some normalcy.
Yes, I've noticed moles too, mostly on my head. It's amazing what was under all that hair. Nothing suspicious, but you better believe I was looking at every angle I could with hand mirrors and the bathroom mirror.
Anyway, that's all for today. I hope everyone is doing ok. Hang in there ladies!!
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I have a bit of a silly question. For those of you who are having chemo before surgery how do you know if you are node positive/negative? And does that impact your therapy? It’s just curiosity. I had a mastectomy so I know the status of my node and that impacted my treatment plan. I’m always surprised that there are such varieties in treatments dictated seemimgly by geography (Can/US). Just a wonder I have....
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joyseeker- that is something that bothers me. I don't know if nodes are involved. The oncologist, breast surgeon and radiologist all felt around at my initial appointment and said they have no reason to think I have involvement. The MRI showed on the leftcancer side, nodes mildly prominent and note is made of a 5 mm left internal mammary lymph node. No adenopathy on right.
Just hope that chemo is killing off everything that might be lingering.
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Hi, Joyseeker - I'm one of the neaodj girls. I don't know about my nodes for sure. My physical exams didn't suggest the nodes were involved, but then my MRI and PET scans showed possible node involvement. To break the tie I had an enhanced or magnified (forget the exact term) ultrasound of the lymph nodes. The radiologist and surgeon seemed to think the nodes were clear. Still, we won't know until surgery.
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So interesting to me. However we all end up here I guess we end up here. I suppose I’m grateful I “only” had 2/4
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Hi Joyseeker,
I know I have node involvement as it showed up in my ultrasound. Underarm biopsy was done at the same time as breast biopsy. However, they still won't know the extent until surgery
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Joyseeker, my PET scan showed a 'hot spot' that was a lymph node, so my oncologist had it biopsied. It was + for IDC. This biopsy was about 2 weeks after the breast biopsies, which showed DCIS and IDC. Based on that result, I will have radiation after surgery, after chemo.
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Thank you all for sharing so openly about your diasnosis. I sometimes wonder how we all found herself here. The numbers are crazy to me. And so many YOUNG women. Right now I’m just focusing on getting through this chemo business. 1 down. 5 to go. (I will be done by the beginning of February) Then on to radiation. (March) I sometimes feel alone with such a different treatment plan than you all. And I can be grateful my mastectomy surgery is behind me. suppose it all has the same goal. Kill those bad cells!
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hi joyseeker,
mine has 1 confirmed node involvement (they did a biopsy when the one under my arm showed up swollen in an ultrasound). and another scan (it might be my mri or the ct scan) when they were staging it showed another "suspected" lymph node. until then i wait for surgery after neo adj chemo to know for sure.
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mkn86 you and I have similar chemo regimes. I’m assuming you’re not in the US. How did your first rounds go?
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hi Joyseeker, that's right i'm on the other side of the world. 🙂
EC for me was manageable. i had to deal with fatigue and mostly loss of appetite and constipation. my period also didn't stop even after 3 doses. And usually the first 2-3 days after infusion my right chest feels short stabbing pains (cancer cells dying) and a liiiittle bit sore. my tumor i think it shrank. before chemo i couldn't sleep on my right side. after two doses i could do so again. I started losing my hair 14 days after the first infusion. i still have maybe 20% of it left (or less). and very very little discoloration on fingertips. they look like faded moles.
my MO is switching me to weekly taxol with carboplatin next week (no more 4th dose of EC) but my ultrasound showed that i have a fluid-filled cyst again which might explain the discomfort/"tumor growth" after the 3rd dose of EC. i have to send the results to my MO and see what he says. because before the ultrasound we both thought the tumor barely shrank but just became moveable. which is why he wanted to start me on the next set of meds.
seeing/knowing how your tumor reacts while it's still in your body is really mentally taxing. i keep trying to find ways to distract myself. but still hoping for the best and sometimes i allow myself to go to the dark side and cry it all out.
I'm a bit anxious about Taxol+carbo and how my body will react but trying to focus on enjoying this week first
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Hello Ladies,
Just finished 4 rounds of A/C and I agree. Stay on top of nausea meds. It wasn't as bad as I thought it would be. Anxiety truly causes tremendous stress but stay focused. Stay strong, rest when needed, have your breakdown moment but get up and fight. My next 4 rounds of taxotere is supposed to be much better than the the A/C. Time will tell, what keeps , me going is the support of my family colleagues and students. In my positive is a very scared women who knows that I am in the fight of my life and so are you.
Bert
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Scaligirl, what chemo are you taking? It doesn't say in your profile. I am taking A/C right now and my hair started falling out about 10 days after Round 1, and in clumps around Day 13. So I shaved it. However, I still have 5 to 10% of it still hanging on for dear life, most of it the white hair. Maybe it's older and wiser than the rest of my hair.
I had round #3 yesterday and I suspect the rest will fall out, but who knows for sure? I still have some nasal hair, some facial hair (thought my stubborn chin hairs have seemed to vanish), my eyebrows and lashes, and part of my pubic hair. (I've heard that the eyebrows and lashes will go after Taxol starts, and sometimes AFTER the entire treatment ends.) But even though my hair is not completely gone, it doesn't seem to matter as I'm very sure that my tumor is shrinking, and that the chemo is working. So, even though it seems logical, there doesn't seem to be a connection between hair loss and the tumor. Nor does there seem to be any connection re sickness level and effectiveness, at least acc to my NP. As far as nodes go, when I was getting my US guided biopsy, before the official DX, I knew that I had breast cancer when the ultrasound tech also scanned my lymph nodes. I don't know much, but I knew that was bad. It was outside of the presence of the doctor, but after he did the procedure, he asked if she had scanned my nodes, and she said yes and that there was no evidence of cancer. He also felt around in my armpit, as has my my surgeon and MO subsequently, and they are apparently not enlarged. But that's the only evidence I have to go on right now. The MRI did not include the nodes, unfortunately. So I'll have to wait until my surgery to know for sure, which does concern me because it'll be AFTER the heavy artillery chemo. I asked my MO what would happen if they found cancer in the nodes during the sentinel biopsy, and he smiled and said, "We have many things we can do, and that would be determined by the pathology. But we're not going to worry about that now."
So all I can do now is to assume that this chemo and surgery regimen is going to kill all the cancer. At the end of the day, it IS all a bunch of numbers, which are not meaningless, but they certainly don't tell the whole picture. They do not account for our overall health, our age, our stress level, our will to live, how well the tumor will respond to chemo, or how our immune systems will handle any remaining cancer cells. I'm sure I've said this before, but I personally know 2 Stage 4 BC survivors who are still not only living years later, but are thriving. One friend, an 8 year survivor, had the cancer travel to her liver. She took an experimental drug at the time (Herceptin, perhaps?) and is now cancer-free and back to work.
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I can see this is a busy thread, I will say prayers to all the pink sisters, kill all the cancer with the chemo in our bodies.
I’m assking for prayers for tomorrow infusion, met with my MO today and he said I will have two more taxol infusion. Please pray for my last two infusions .... thank you so much.
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I eat yogurt that helps for diarrhea for me. (I drink less coffee also).
Round #3 whoo everyweek different bad days were #2&3 thank God today everything was normalish!!!
Thanks guys good luck & welcome new friends!
God bless ++++ mmmmmwahhhh
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PauletteK, a prayer said.
Joyseeker, I'm also doing neoadjuvant chemo, and don't know my node status. Nothing is seen on MRI, US, CT. No enlargement felt on physical exam. I asked my onc how often they see node involvement in cases like mine, and she said 5-10%. Reading BCO it sounds like it should be much higher percentage. I know my tumor is shrinking/softening, so that's a good sign, and I am hoping that if anything is in the nodes, the chemo works on those cells too. My onc said that, unfortunately, lymph nodes don't respond as well as tumors in the breast, but they do respond sometimes. The bottom line is that we don't know, and won't know until surgery. I will be a nervous wreck waiting for biopsy results.
And yes, so many young women, but I think we must be more active on the Internet in general, so that is why you see a relatively high proportion of 30 and 40 something.
Scaligirl, my hair started coming out in clumps after Taxol #4, so I had it buzzed and shaved. However, two weeks later, I can clearly see it's growing. I'm thinking it will probably grow while I'm on Taxol, but then fall out again on AC. I may have it shaved again then, will see. And yes, so much more grey! I started coloring only 4-5 years ago, and was doing it 3 times a year (I'm a brunette, so grey is noticeable, but there wasn't too much). I'm pretty sure when it comes back it's going to be all pretty grey
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farawaytoo, thank you for the prayers, I’m getting nervous for tomorrow already. 😐😐 Don’t worry so much one day at a time, I will pray for you also
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lisaRx, I'm on TC - Taxotere and Cytoxan. I don't know why that' not showing in my footer. I submitted a help message. Anyway, thanks for responses ladies
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paulette,
I have said prayers for you. I had serious doubts about Taxol. Brefly regretted it due to SE. Bone pain and Neuropathy SEs dissipated to faint degree or none after 3mos. You can do this bc you will be kicking the bleeping disease. I proclaim Paulette shall not be bothered by BC ever.
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PauletteK, sending up prayers for you today. You're in the home stretch now, my friend! I'd be so stoked to only have 2 treatments remaining.
Agatha, my friend, good luck with your diet. Your MO is trying to set you up for success, but guilt and anxiety over food isn't helping your cause, either. Perhaps a modified diet that isn't as strict as what she's asking to do would lead to better success with your weight loss goals. There are a lot of theories at present, but not much actual evidence that certain diets (e.g. no sugar, low carb, low glucose) will lead to better success re recurrence. There is compelling evidence, however, that obesity and lack of exercise DO increase your risk both of getting cancer, and with recurrence. The one study that is linked below concluded that that maintaining a normal body weight and increasing activity are the most critical factors in reducing your chance of recurrence, with activity being the most important. So if you cannot stick to that very strict diet, perhaps a more realistic, and achievable goal might be to decrease your sugar intake significantly (which will help lose weight), while increasing your activity level. After all, the best diet in the world is worthless if you can't follow it. Talk to your MO and see what she has to say.
http://www.breastcancer.org/research-news/most-imp...
Re the white/grey hairs. What little hair is left on my own head seems to be all white, so I'm wondering if perhaps the white hairs are just more resilient. I've heard from a few of my friends that their hair came in all sort of crazy colors and textures at first, and then it started going back to normal. After I shaved my hair below the dye line, mine was salt and peppery, so I assume that's what I'll end up with in July or August. I also read on the Hair thread that some people's hair started coming in like peach fuzz during the Taxol phase, but I'm not sure it lasts. I still have most of my eyelashes and eyebrows, though I've read that they'll be coming out soon. Argh! Cancer must despise vanity.
Speaking of eyebrows, I'm wondering if anyone has ever tried to save them by icing them during treatment. They make those gel ice packs for migraines.... Maybe I'll try it. It can't hurt.
Today is 2 days from my last chemo. I'm very happy to report that I'm sleeping better. I hate to say it but I think my lack of sleep was due to anxiety. I'm so glad I brought up my silly fears to my MO, so that I can quit worrying about them! I'm still getting up several times a night to drink and pee, which I don't mind because I think it helps alleviate nausea, but I'm falling right back to sleep. It's amazing what anxiety will do to a person, and how wonderful a decent night's sleep is.
So now my biggest complaint is that my taste buds are completely shot, and I find myself forcing myself to drink and eat. I bought Special K, which is one of the few cereals on this AntiCancer diet I'm trying to follow, and it tasted like....puffed rice nothingness. Then I ordered a batch of my favorite hummus from a local restaurant to eat with my veggies, and it tasted like nothing, too, even though I added hot sauce and garlic sauce! Well, hell, I might as well add in healthy foods that I never liked before, like black olives and brussel sprouts, cause I won't be able to taste them!
Happy Friday, everyone. Wishing you all a SE-free, happy day.
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Speaking of young, I never ever expected to deal with breast cancer especially at 45. My family history is diabetes, high blood pressure, strokes (in their 60's/70's). I have one half uncle that had prostate cancer and my grandmother's sister in her 90's had stomach cancer but that's it. I breastfed for 17 months that was suppose to reduce your risk. But being triple negative, it really seems to hit those in their 30's and 40's.
AC #3 coming up on Tuesday then one more before Thanksgiving before switching to Taxol. Nervous about Taxol, I see all these SE mention with it. And I am getting 6 doses every 3 weeks. So I assume I am getting larger doses than those doing it weekly. I will be in chemo through March.
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Jenn, I just finished #3 and will start the 12 weekly Taxol treatments at the end of the month (after Thanksgiving, yeah!), so if all goes well, I'll be finishing chemo in mid-February. From what I've read, the half-dose weekly treatments are as effective as DD yet milder and therefore better in reducing some side effects such as neuropathy and nail lifting. This is vs. the previous standard, which was DD every 2 weeks. However, having to go in weekly can be disruptive to people's lives and I've seen some complaints that it was grueling on the body to not get a break in between those weekly visits. I imagine if people get nauseous, going every week could get soul sucking.
I wonder if the 3 week DD cycle may be another attempt to balance effectiveness with a reduction in the troubling SEs The biggest downside is that you won't be done til March...but you might end up less exhausted and more healthy for surgery, too.
I do plan to ice my fingers and toes, as it may alleviate the worst of the neuropathy risk.
I'll try to ask my MO about his thoughts for choosing the weekly half dose.
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I'm feeling very chemo brain today. There is so much to process here today. I will just say that I'm sending prayers to everyone.
My biggest side effect right now (besides taste issues) had been constipation. I'll need to stay on top of it for next treatment.
Someone mentioned Thankgsgiving. I have to say, I am so happy that I came up with this idea before my surgery. I told my husband that I wanted Thanksgiving. I knew my tastes and appetite would be all messed up by then, and I wanted my yummy food. So, at the end of Sept., we had his family over for early Thanksgiving. It was awesome. I got all my favorites and got to host and everything. Now I won't feel so much like I'm missing out come the real day.
I felt good this morning, but am fading fast today. Tired, headachey, a bit sore....I think a nap might be in order after lunch. Baked chicken breasts and brown rice. Yum.
My friends and family started a wig fund for me and I went to the wig shop last week. I have three picked out that are favorites and each are about $250 each. I was glad I didn't like the crazy expensive one. I have enough money to get two if I'd like, but I'm not sure if I'll get one and some head coverings or two. I'm ready to get that portion of things on with it. I'm hoping my hair starts falling out before my husband goes out of town in a week and a half so that he can shave it for me before he leaves. I don't like waiting...
Gotta go check on lunch, healing thoughts to everyone today!
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I have some good news to report!
At my pre-chemo physical exam my MO told me that my tumor has shrunk by more than half! That's only after 2 treatments - I had 6 more to go (got # 3 today.) This is so great for me since A) my tumor was very large 
my cancer is partially lobular and that can be stubborn in the face of chemo C) my cancer is Triple Negative so I have limited treatment options. LisaRx - thanks. I intellectually know all of this, it's just very hard to get it going. My MO and I discussed my diet and she realized she's stressing me out on the glucose thing. I just promised to do my best on a more relaxed version of what she wants. And yes - I do need to get moving. So far my tastebuds are hanging in there - sorry yours are on vacation!
PauletteK - I've said a prayer for you. You are almost done. Fantastic!
Petey - Your Thanksgiving in September was a genius idea. Your family sounds great. Good luck with the wig.
Hope everyone has a good weekend. I'm going to get my semi-permanent brow makeup applied on Sunday. I'll let you know how it goes.
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Agatha, that is wonderful news! I know that the TN diagnosis is scary (I have it myself) but my MO did say that the key is how the tumor responds to whatever we throw at it. Having that sort of evidence must be a weight off your shoulders. Congratulations!
BTW, I've noticed that some of my more stubborn chin hairs are coming back. I mean, my tumor is yielding to this AC concoction, yet my chin hairs have found a way to survive. Yippeee!
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Agatha such a good news for you, yeah! No more worries just focus on the chemo.
Lisa - I still couldn’t see hair coming back, I kept losing more hair from my eyebrows now I basically don’t have any hair on my brows. Love to see the semi- permanent brow from Agatha.
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AC #3 down. My MO was correct about SEs being worse with each session. I've been fortunate not to have nausea too much with the previous doses but I got it almost immmediatly after my infusion yesterday. My main SEs are mouth sores (which are under control with magic mouth), fatigue (one day I was so sleepy and achy I wanted to crawl on top of my desk and sleep), some nail changes, black circles at the bottom edge of my nails but they have expanded to the full nail, and achy bones off and on from the neulesta — I used Claritin but I'm not sure it works as well since the first infusion. A little Advil doesn't the trick though. Anxiety has become an issue. I finally asked my MO for something at my last visit but I'm not sure I like it so I've been drinking something called calm tea and that has helped me relax some. Oh and my tastebuds are shot. I go by if a food makes my mouth feel good. That's when something is “tasty" for me. Soups and veggies, ground turkey mostly.
My hair is gone. Just a few wisps of what used to be. I've been wearing hats mostly. Tried a wig for a special event and it hurt by the end of the night. I had such a headache. Anyway, I will most likely only use them for special events. I'm a fundraiser so I'm always going to an event.
As some have said there is so little to provide us TN ladies so that stays on my mind although my doctors feel my prognosis is very good. I believe them but I helplessly think about the future and what will happen if nothing else is available to me. Going through this brutal chemo can't help but make me think about everything when I'm alone at night. I don't stay in that dark place too long as I am a very positive person but I wouldn't be human if I didn't think about it I suppose. I have friends and family who hold me up and lift me. I am blessed that way. And especially my DS Annie (who cried because she was unable to go my third infusion with me), and my best friend who drops everything tospend infusion weekends with me. I also have my faith and that sustains me for the most part.
So that's where I am at the beginning of AC #3. Quick question, does anyone have high blood pressure when they first arrive for appointments and then settles when they take it again before chemo? It's so weird. My MO said it's something referred to as white coat syndrome. It freaks me out because the last thing I need is high blood pressure on top of everything else. My doc seems to think I'm fine since it goes down after being taken again.
Hang tough October ladies!
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