Chemo starting November 2018
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Jennie - I love that wig, awesome! I will do some shopping. I got my free one from the American Cancer Society at the gift shop at the infusion center today. It is nice to have one, just as an option. Next one will be purple, for fun! Thank you!!
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For those w constipation - if you don't like the feeling of the meds or don't want to just take one more pill (me) - I found it helpful to have a few dried apricots and 2 prunes in the mornings as part of my breakfast. Also, surprisingly, pears or pear juice, works as well. I had some constipation problems after each of my surgeries and those really helped and made my belly not cramp like w the stool softener. Miralax as well has been helpful at times (butt not all these at once, pun intended).
Jennie- I agree that purple wig is striking! MissouriCatLady - how does it feel on your head? I have been reading up a little on wigs and such - did you need a wig cap or glue for it? With my skin and crazy excema, I was worried about it being scratchy and having a rxn to any type of glue.....
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Thanks wcs that helps
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Love the wigs ladies! I’ll start the search soon! Thanks for the tip to not shave early, I was going to schedule it next week. I guess I’ll wait a bit and just wear my kitty hats so I don’t cry, lol.
Keeping kitties out of the bedroom last night was a dismal failure. I locked the door since someone opened it the last time. Ended up with scratching and hearing the song of their people for an hour and couldn’t take it.
Figured I’d sleep on the couch and they could have the bed. Woke up as akitty sandwich, lol.Didn’t sleep too much last night, think it was the steroids. Other than a little nausea and tiredness, think I’m doing ok today.
Hope everyone is getting through this and glad you’re here.
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JennieKeaton - I experienced the same thing with the constipation. My infusion was on a Friday and it took until Sunday for things to work properly. I had to take Miralax. The nurse also suggested Senokot. However once that problem was resolved the other side of the spectrum kicked in. I was so grateful not to be constipated I didn’t care. 😂 Sorry y’all!
As for the heartburn - I didn’t feel a burn but I sure do burp more!
Anybody have suggestions for dry skin - especially for the face? I went from teenage acne to blemishfree dry dry skin.
I cut my hair short on Saturday. It continues to fall out. I am a teacher at a K-8 elementary school. The kids are curious about my supper short hair. I taught kindergarten last year and my former kiddos were asking me yesterday why my hair was so short like a boys (they are so honest). They know I have cancer and I told them the medicine I’m getting is so supper strong to kick the cancer out that it makes my hair fall out too. Then I told them it would grow back and we would predict and graph whether my hair was going to be straight or curly and what color. They liked that idea. I also told them I’m going to be wearing a lot of hats soon and maybe we could have a crazy hat day and they could wear hats too (luckily the principal already agreed to this). I know my situation is a bit different than explaining it to your own children. My goal is to let them know that I’m okay and in the grand scheme of things my hair is not a big deal. No matter if I have long hair, short hair or no hair I’m still the same person. I may look different but I’m still me. I think that message is universal. Good luck talking to your children for those who have to have the talk. I’m hoping I can get through tomorrow with my “boy hair cut” short hair. My next infusion is Friday. If I have to buzz it this weekend so be it. I have hats ready to go and my students are better prepared for my next transformation.
I am so grateful for this community. I’m so glad there are people that are going on this crazy journey and we can commiserate on our new normal and help each other through this maze. Thank you all!!
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MDoc - you are having some awesome and wonderful ideas explaining things to your kiddos. How nice everyone is going to get something fun out of it, with crazy hats and graphs. Awesome ideas, you must be an awesome teacher!
RunningCats, sorry everyone was scratching. They must really have missed you a bunch!! Those steroids - I woke up at 1 and didn't get up til 2. Gonna be a long day at work. I am hoping and praying my Neulasta doesn't get me til Saturday. My On Pro is set to go off at 7 tonight. Been taking Claritin and Aleve preparing.
Maddie, I wore my wig to work today. My boss told me the caps are for folks that have hair, to cover their hair up with. I was wondering about that too. I have a large head (aka block head) and this wig has a P in it, which I think stands for petite. I hope I don't get a headache. The lady who sold it to me was very kind and told me how to take care of it, and how to adjust the little Velcro things in back to make it larger. I sometimes think people feel sorry for me in my hat, just my own demented mind probably, so it is a good option to have a wig. Now, when I walk down to the cafeteria for lunch, I won't feel like everyone is looking at me. I have a kitty hat in my purse just in case it is too tight or itchy, we'll see. My husband did order me a pink wig last night online, for fun. I'm going to look for a purple one too.
Remember to drink your water today! We TCHP girls sometimes wish for a hard bowel movement, I hope you constipation ladies can find some relief. Doctor told me to work with Imodium and Lomotil and try not to have more than 2 bowel movements a day, I shall try.
I met a lady having chemo yesterday from Sri Lanka. I asked her how many treatments she was getting, and she and her husband laughed, they have been coming for treatments 4 years. As she got started, I looked over towards her and she was reading the Bible. That brought tears to my eyes, a lady who has been looking for relief for so long, reading the Bible. She asked the nurses to pray with her and they all held hands and they did. My nurse told me she had not been getting better, until recently it seemed to have started working. This patient, her name is Chanti, asked me if I'd like her to write down her favorite healing Bible verses and I told her yes. She is going to leave them with the nurse, so she can give them to me next time I come. It is humbling and amazing meeting some of these women.
Hugs!! Lisa
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JennieKeaton:
Any nausea you have should be mild if it is managed properly.
I had almost zero nausea with IV Aloxi during the infusion and Zofran tablets at home but couldn't stand the taste changes and the duration of them that the Aloxi caused. I was switched to IV Zofran plus Zofran tablets at home and then IV Emend plus IV Zofran and Zofran tablets at home and had some nausea on those regimes but nothing that brought me to the point of vomiting or dry heaving except once, and I think that was because my at home management schedule got disrupted.
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Concerning acid reflux, I found that for me, the main culprit in this was the dexamethasone.
I had been prescribed Omeprazole (Prilosec) for this but did not take it regularly because I build a tolerance proton pump inhibitors if I do so and then I have constant acid reflux that nothing helps.
I found though that if I started the Prilosec 4 to 5 days before the dexamethasone, continue it until 3 or 4 days after the dexamethasone, and then switch to Zantac as needed...usually 1 a day for three days, I could avoid the reflux without developing resistance to the Prilosec.
And a heads up for those of you who will have surgery after and who get reflux from dexamethasone, they might give it to you during or after surgery.
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I had reflux this morning for the first time. I had an old prescription for Omeprazole, thankfully. Thank you for those tips, WC3!
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Great looking wigs! I love that purple. I don't plan on getting a wig but something fun like that would be fun to try I think.
MDoc - Someone who had been through BC treatment in the past recommended this to me: https://www.amazon.com/dp/B00EYOHJZ2/ref=snk_ddb_dp_2_mdpajx?smid=ATVPDKIKX0DER&psc=1&ie=UTF8 she said she'd had a hard time with her skin and got this from the dermatologist. I love it so far. It is thick but absorbs well and not at all greasy and best of all - zero smell. Not like some creams that say they're fragrance free but still have a weird smell to them. When you put this on it truly smells like absolutely nothing. It's a little $$$ but a little goes a long way.
MOcat - That was so kind of her. I don't think there's any such thing as too much inspiration or spiritual support right now.
I met with the onc yesterday and so far so good. My blood work looked fantastic and I was pleasantly surprised. What labs does everyone else have done? I feel like my oncologist is a very hands off, don't go looking for trouble kind of doctor. She has only done a CBC on me and that's it. I really would have expected a more thorough lab workup in advance and also periodically throughout chemo to see how my body as a whole is handling things but apparently that's not her philosophy.
She told me that my reaction to the adriamycin was the topic of a flurry of emails and back and forth discussion. According to the research she had done the reaction I had was so rare only one other oncologist in the practice had ever seen something similar and he'd only had it happen once and it had never happened before when using a port, only peripheral IVs. She presented my case during their team meeting and said the absolute consensus was that stopping the adriamycin was not an option and we needed to do whatever it took to keep going. They were still discussing the situation and changing their minds all the way up to yesterday evening and decided not to give me the huge horse dose of decadron today (YAY!!!) and instead start me on aspirin and singulair and a lower steroid dose. Apparently there was a study done out of Dana Farber on similar reactions that showed positive outcomes with the use of antihistamines and NSAIDs as a pre med.
My hair started aggressivly falling out last night. Up till then it was just a kind of steady, consistent shedding but I got home from work yesterday and as I was sitting on the couch I scratched my head and showered the couch with a huge shower of hair. It was really shocking even though I knew it was coming. As I saw someone say in another board - I'm starting to look very moth eaten right now. I told my husband that I look like I belong in an Oliver play.
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Good luck today, Hazel-Nut, I'm glad they have everything sorted out and hope you have a better infusion today. Sorry about your hair. My face is turning bright red from the steroids and will stay that way until Saturday. At least I know what is causing it this time. You are in my thoughts and prayers.
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Moth eaten - that is a very good description of how I felt Tuesday. I had a slightly different take on my appearance - failed Chia pet or the Crypt Keeper from Tales From the Crypt.....
Blood work wise - mine does a CBC and liver enzymes panel every week. My A/C tx is every other week, so I get blood work only on the "off" weeks and blood work prior to infusions day of chemo. They were worried about my liver enzymes last week, but they have since bounced back and are just going to monitor going forward. Liver and kidneys filter out this chemo so they also told me to make sure I let them know if I see or feel any signs of bladder or kidney infection. I already know I have kidney and gall stones (thank you PET scan!), so they've been really on top of my kidney function. I'm surprised they haven't had me do any collection and measurements on output yet for them to test.
Good luck and prayers for everyone going thru tx this week! May all meds be smooth and no bowel issues or heart burn in your futures!
I have a double date set up w my longest time friend (since 3rd grade!) and her husband - we're seeing the next Harry Potter movie this weekend. Sunday, my mom, sisters (except the oldest) and I are all going to see a ballet performance of The Nutcracker - an annual tradition over the last 15 or so years. I'm glad I got the "ok" from the nurse today based on my numbers, she just wants me to wear a mask during both if there is anyone coughing around us.
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Hi everyone
Just an update: I was supposed to get chemo on Tuesday, but had last minute doubts whether I should do TC or AC-T. Went for chemo appointment Tuesday, MO said there’s no rush and said I should take my time to decide. She wouldn’t lean towards one vs the other. My oncotype is 30 and said I can’t go wrong with either choice. In the meantime she sent me for a heart echo in case I decided on AC-T. After talking to several people and my friend who is a GI oncologist (she said AC-T in my case was overkill), I finally stuck with TC.
Chemo was rescheduled for today. I had my first infusion. Just got home. Overall, uneventful which is good. I was worried sick beforehand and super anxious. But I’m home now and feel fine. The paxman cold cap wasn’t bad either. In fact not as bad as sitting in a salon for hours and getting your hair done. I also iced my hands and feet. Used a sissor to cut off the tips of hospital socks they gave me so my toes were exposed to the ice in the zip lock bags they provided. My husband was next to me and was feeding me ice cubes the entire time the Taxotere was being infused. I think it took a good hour or so just for the Taxoterepart.
Not sure what to expect in the coming weeks, but so far so good. Will have to wait till this weekend to see how TC is gonna make me feel.
Wish everyone else here the best. Hope all goes well.
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Just had my 1st AC infusion today. They call it the Red Devil. Wasnt too bad, No Nausea thus far. I drank a lot and took some calcium , magnesium and vit d to prevent bone loss. I drank gatorade and water during. Kept peeing like crazy of course. Im home now but so far just getting a headache. I have to go back tomorrow for hydration and the Neulasta shot. Should I start taking the Claritin tonight and in the morning?
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Asaka and HopeBry...I'm glad your day went well today and hope you have a good night!
I start tomorrow and it was very comforting receiving encouraging phone calls and messages all day. Well...except for one co-worker who complained about the mall being crowded, spending too much money and her husband making a mess in the house! At the very end of the conversation, she said "oh yeah, good luck tomorrow." I have to laugh and look at it as entertainment!
Poised and Pink..I see you start tomorrow also-good luck!
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Thanks Flower216. Good luck to you as well.
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Thanks Flower. Yes, it is entertaining to see what people complain about when we have to deal with what we’re dealing with.
Good luck tomorrow. You WILL be fine. Sending you positive energy.
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MaddieB - see that’s what I was expecting going into this, especially since I’m on a dose dense schedule too and I’m also having some bad reactions. I’m shocked she didn’t want liver function or anything else checked. It’s all a very hands off experience. They weren’t even planning on doing any scans either and I only got my bone scan because of having a lot of new hip pain. I’d really prefer they at least check my liver function! I think they’re just trying to avoid looking for problems. I see everyone on here getting really thorough work ups and evaluations and my oncology team is completely the opposite. I’m using Hopkins center for rare tumors - you’d think they’d be all over me trying to find out as much as they can
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Hazel-Nut...when I first began this journey, I got some good advise. First, you must be your own advocate, question everything, and learn as much as you can. Second, you must have full confidence in your team. Hazel-Nut, if you are questioning the testing your drs are or are not doing....please question them! And if you don't get answers that you like or in your heart of hearts you feel are not appropriate, go elsewhere. You are young, and deserve the best of care!!
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Good morning friends! Wow, what a whirlwind of events. Monday, I received my port, Tuesday, I went for a 2nd opinion at Emory. I'm so impressed how the hospitals communicate openly. The tissue sample was sent to Emory and they determined I was 50% Estrogen receptive. Before I kept hearing that my 20% ER positive was so close to being triple negative, they were going to treat me as TN. I'm not TN anymore. Wednesday was my first A/C dose dense Chemo. All went well. Yesterday, I worked. Last night I crashed asleep on the sofa for 2 hours. I never do that. And today, day 3, I decided to stay at home. I don't have any bone pains. I took Claritin Wed, Thurs, and will again tonight. I just feel sleepy and blah. I know I need to walk and exercise, and I got dressed to go to the gym, but I really want to go back to bed. Maybe I'll exercise later.
The nurses said my hair will be out before my next treatment. I have 6 beanies from friends, and am undecided about a wig. I think I'll get one, in case I decide to go do something fun. My doctor said I can get a prescription. Everyone has recommended a local Merle Norman to shop for it. I just can't imagine trying to find one. Once I learned of cancer, I cut my long curly blondish brown hair short and dyed it pink. My students loved it!I've been doing so well and have an incredible support group (a FB secret page with 300+ members). T-shirts being worn by so many to support me. Pink being worn by staff and students at school on Fridays. I plan to work next week after resting for a nice 3 day weekend. I just am not getting very happy about going for more Chemo on 12/12.
My brother's motto is: Let's Blast It and Get Past It
This is what is driving me!
Thanks for sharing all of your experiences. I don't know what I'd do without this thread!
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I'm getting my 2nd infusion of A/C on Tues 12/4. For those a few weeks ahead of me when did your hair start to fall out or has it? I have long hair and am getting a pixie short cut today before it starts falling out and I have a meltdown. I'd like to shave it before it starts coming out in clumps
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Just wanted to provide an update on how the week is going. Chemo on Tuesday was beyond non-eventful - YAY! Since then, I had a raging headache on Wednesday and Thursday. Beyond bad. I'm prone to headaches - when I had mono years ago, the headache was way worse than the sore throat. But other than the headache, I was fine. Today, headache is gone. I'm a BIT achy - it feels like I had a hard massage and am recovering. Nothing significant at all. Some weakness/fatigue, but not bad. No nausea. No neuropathy. I'm calling this week a win!
My purple wig will arrive on Wednesday of next week and I cut pixie on Friday of next week. Looking forward to seeing how the purple wig looks - I'm so excited about it!
Hope all of you are doing well.
One day at a time ladies!
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MissouriCatLady:
I hope it works. Reflux is horrible. Just be sure to let your doctors know you are taking it. Mine prescribes it as part of the at home chemo ore med routine.
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So I made it through my first treatment and it was pretty uneventful. Although the SUSTOL shot was weird; having the warm med being injected into tummy. Now waiting to see whats in store for me the next few days!
Jennie...sounds like you are doing great, and I think your purple wig is a fabulous idea!!
Susan...I probably will do what you are planning..getting that pixie cut first. I never had short hair, it will be strange. But then again, this whole journey is strange!
Duncmelsmom..what a wonderful support system you have!!! That is so important! And I love your brother's motto!!!
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Ugggg - I spoke too soon. The bone pain just started. Ouch! How long does it last?
And to add insult to injury, I just lost a temporary tooth tonight. Was waiting on final implant, and the tooth fell off the retainer. Uggg..
I'm so restless right now. Thinking a demerol might be in store tonight.....
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Susan05 and Flower216 - hair things : I'm on A/C every other week for 4 tx, starting day 13 I had some hair loss, very noticeable by day 16 (?). I started to have some hair prickles about day 7, felt like really uncomfortable goosebumps all over my scalp. I have had long hair for the last 10 yrs or so ago (about 2-3 inches above my waist). I cut mine shoulder length in May. Chin length in August before first surgery. Pixie cut in September before 2nd surgery. Shorter pixie in October before 3rd surgery. Shaved down to less than 1/4 inch on Wednesday (?) this week. I tried not to shave too early or too close to the scalp. The last thing you want is either a cut on your scalp or folliculitis. I thinned mine by just running my fingers thru it before shaving. You don't want to pull anything out forcibly.
Jennie - bone pain for the Nuelasta OnPro I had started the evening of the injection and about 4-5 days after. It got better as time passed on, my worst day both times was day 2 post injection. I started premed with the Claritin day before chemo and kept taking it up to 5 days after.
Hope everyone has a good weekend!
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Hello lovely ladies, I’m checking in, I am supposed to start chemo today but I changed it to 12/5.
flower216, congratulations on the first round and I’m glad everything went well. Did you iced your hands and feet?I’m doing TC too, are you doing 4 or 6 rounds of TC?
JeannieKeaton, sorry to hear you’re having pain right, hope you feel better soon. I had two teeth extracted 2 weeks ago in preparation for chemo.
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Round 2 of dose dense AC is done and dusted. The new med regimen to prevent another reaction seems to have worked out well. No rashes this time and only about half as much chest pain as I had the lst go round. I feel a million times better today than I did after my first round as well. I’m not sure what tomorrow will have in store for me but it’s really encouraging to not immediately feel like I was hovering on deaths door from the side effects.
I’m not sure if changing oncologists would help on the medical workup front. I’m petty determined to stay with Hopkins. Being 34 with a rare, aggressive cancer makes it hard to find a practice that has experience with treating similar women. I’ll ask on my next appointment for a more thorough lab workup and see what the onc says. I don’t know if asking for a CT or pet scan would be necessary. I’m not symptomatic of anything and they did tell me early on that they’re research led them away from invasive scans in patients with breast cancer less than stage 3 and I understand that reasoning. I feel comfortable and like I’m on the right track but it’s weird to be in the hands of a medical team that pushes less invasive approaches. Im so used to old school doctors that order every test under the sun and my expectation was that this would be the same deal but it is isnt at all. I’m glad not to have anymore scans looming because they drove me crazy but I didn’t see the harm in just doing more bloodwork. I think I’ll ill ask one of the doctors atwork if they know what the standard pre infusion lab protocol is so I know exactly what to ask for and why.
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So I had my "AHA" moment overnight as I struggled with an excrutiating headache (pain scale 9 of 10). Had it off and on since Tuesday. Claritin is drying me up to the point of unbearable pain. So looks like I'm going to have to choose between bone pain and headache. Ugggggg.
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Update: Day 2 after TC chemo, side effects so far are pimples on forehead (which aren’t too noticeable) and constipation. Taking Colace stool softener. No more dexamethasone today. No fatigue..yet. Not sure what else may or may not creep up. Hoping for the best.
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