Starting Chemo October 2018
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Cc that’s amazing that your MO thinks you may have complete response to chemo!! It sounds like you both have a sense of humor about things even though you might not always be on the same page. Good luck tomorrow
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Good Morning warriors!
3 treatments in the books! My best friend went with me yesterday since hubby had meetings that he couldn't get out of. She and I laughed throughout the entire time. We kept asking for a margarita bar, sadly they didn't have one. The nurses were laughing along with us.
So here is a picture from yesterday's treatment. One of the nurses set up how she wanted my friend to take the picture....
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officially finished with dense dose AC as of yesterday!! Got to ring the bell for that portion too! Have started my nausea meds on a schedule and am really trying to hydrate more. Thought I accidentally left my chemo bag with my medications by my infusion chair yesterday afternoon when it was time to take a nausea pill. Luckily I found it a couple hrs later at home so all was good. Feeling ok today, hungry. Happy to have AC behind me, just want to have the SE behind me to from this last round. Go back home on 17th next MO appoint back home is Dec 4th so I’ll get a break before taxol, feel like I’m trying to wimp out because AC wasn’t fun but everyone tells me most say taxol is easier. We shall see. Off I go to get some breakfast and relax to everyone who just had infusions hoping for little to no SE for u!!
Casey- good to see your post! That’s good news you might have complete response. I’d love to be a fly on the wall during your appts the conversation back and forth has to be hysterical.
Not giving up- love the red heels! 3/4 of the way there girlfriend!
Sadlynew- congrats to u on getting 3/4 through too! Almost at that finish line!
Patrice- your guinea pig congrats u on your 3/4 mark as well! Hope the roll on 2 isn’t too rough this go around,
Taurus- I shaved my head to a short short buzz the day before my first chemo, By day 14 my shower drain was filling up with buzzed hair. Keep in mind you will lose the hair EVERYWHERE ahem, so don’t be surprised. I took my hair early because my hair was so long prior. I say do whatever will make coping easier.
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cc - yay! So excited for the response you are getting to the treatment! I would also like to buy a ticket to be a fly on the wall for the convos with your MO. I agree day by day. We can all do this.
Not giving - you look adorable! Your spirit shines through in your picture! Here’s a toast to us for three ACs in the book. One more to go!!!
Rad - how wonderful!!! That bell ringing must have been awesome. AC is such a beast something. I totally understand wanting to get the SEs past you too. Time will pass. Hydrate, rest, walk, then hydrate some more. That’s been the secret it seems to all of this (hydration). Hoping this last dose of AC is kind to you :-)
Let’s keep going ladies!!! Wishing everyone a great weekend. For those with treatment next week, good luck! We are doing it!!!!!!!!
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Good morning my fellow warriors -
So wonderful to hear from you all!
Rabbit - I am beyond thrilled for you, done with the AC, feeling good, and home in a matter of days!!! It's all so very good, and so well deserved. Everyone to whom I've spoken about the taxol has said it is almost always easier than the AC. My nurse and I talked about it yesterday, she said the most common se's are diarrhea and dehydration. Of course they go hand in hand. She did say that once we get the diarrhea under control with either otc or prescription meds, the dehydration is solved too. That doesn't sound too bad, I know we can handle it.
Sadly, you sound so good, I feel like we have learned so much from these 3 treatments, and I whole heartedly agree with you - hydration is absolutely essential to combating se's. Can you believe we are almost done with the AC? I am so proud of you, remembering how rough #1 was, and look where you're at now, you are amazing!
Fritz and Annie sounds like you two have this headcover thing figured out. I thank you both for sharing your experiences. Such wonderful examples of how to handle this hair loss nonsense- from sorrow to strength, you both inspired me to get over it and fix it. Thank you ladies.
Notgivingup- speaking of inspiration, your gorgeous face and those red heels - that's what's up! Anyone who doesn't believe you are a complete bad ass needs only to look at that pic, you are amazing! And a member of the 2/3 club!
Taurus, my hair started falling out right on schedule, 14 days post AC #1. I tried to wait and hold off as long as I couldn't before shaving. I waited too long, there was hair literally everywhere, and handfuls came out in the shower. Shaving was empowering in a way. I hate my bald head, but I decided how it happened and am adjusting.
Joules- I wonder about counts during taxol too, I don't think we get Neulasta after like we do now. Maybe on of our experts can help us out with that question. I worry because we will be smack dab in the heart of cold and flu season. Yuck.
Casey - glad you checked in, great news about your shrinkage, that is incredible news! I can't imagine you could find a doctor better suited to you, sounds like a perfect fit! I hope he does cancel the taxol, but you might want to let him make that decision.
Sorry if I missed anyone, thinking of you all. Drink up ladies, go for a walk, have a snack, drink some more. Wishing you minimal se's and a lovely weekend. ❤
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Notgivingup: LOVE your picture!! Rock it, girl!
Rabbit: Ringing that bell must have felt awesome! I don't know that my infusion center even has one. It's pretty big, so I might not have seen it, but I definitely haven't heard anyone ring one when I've been there.
Patrice: One more to go! I hope Taxol is easier on everyone. I'm getting my Taxane chemo (Taxotere) at the same time as my AC, so I won't know which one has harder SEs. Unfortunately, I have started to notice some mild neuropathy from the Taxotere. More annoying than anything, but it does hurt to walk at times, and with 4 more rounds to go, I'm worried it will get much worse. The tips of my fingers are also starting to tingle to the touch a little. I just pray it goes away PFC.
I hope everyone enjoys their weekend! I'll be enjoying my last few days of feeling good before I get back in the chair on Monday for round #3.
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hi amazing ladies!! I just had my 5th Taxol treatment today. My SE continue to be doable. It seems as Monday and Tuesday are my worse days but I can handle them. I do wish I didn’t have to work since I know I’m just not myself and I’m so tired by the time I get home but the family is really pitching in. I have had this chronic cough since starting the Taxol. Hard to tell if allergies or a SE but fairly convinced it is a SE. we tried the to increase the infusion rate by another 15 min but my cough really picked up so they slowed it back down. My infusion time was doubled since I had such a bad reaction the first time. My bloodwork continues to be good each week. My hemoglobin is slightly low but not concerned as long as neutrophils continue to be alright I’m happy hope it continues
Rabbit-Congrats on being able to ring the bell. What a great milestone
I hope all can have joy this weekend since you are amazing and deserve it.
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SisterStrong, I have my 5th Taxol on Tuesday so we're on a pretty close schedule. Just had my second Herceptin as well. Main SEs are hair loss, acid reflux, and constipation. Annoying but manageable. I've had a bad couple of days this week feeling depressed. Not sure if that's a SE or just that fact that I'm on this difficult journey and it wears me down sometimes. I'm usually a silver-lining kind of girl but this is testing me.
Fritz and Patrice, my white blood cell count was 3.1 last week. I know I do still have some floating around in there but it has gone down each week so it worries me. I asked the oncology social worker about it and she said your body usually has a plateau level it reaches with blood cell count so I am hoping I have reached it or am close to it. She also reassured me that there are drugs they can give me to raise my counts if it comes to that. I'm just gonna stop worrying about. Let it go, right?
Went online and bought a few scarves today. My hair started falling out on day 20. I haven't shaved it yet. I'm milking what time I have left. It's amazing how much hair you can lose and still not show it. I've probably got a solid 3 days left. Since my insurance won't cover a wig, I'm trying to decide whether or not to pay out of pocket. Anyone else have to make that decision?
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For those of you whose insurance won't cover a wig, have you asked your MO to write a prescription for a cranial prosthesis? When my sister went through chemo years ago for thyroid cancer, that's how she was able to get insurance to cover a wig. I had my MO write one up for me, but since I don't even wear the free wig I got from the cancer care center near me, I don't plan on getting another one. Insurance companies are so picky. Something as simple as not using the word "wig" could make the difference in getting them to pay for it.
Joules, I'd say it's definitely normal to be feeling depressed during this process. Don't be afraid to ask for meds, or seek therapy if it gets too overwhelming. I've done both, and it's really helped.
Sister, glad to hear you're still able to power through your treatments, and your team is making adjustments since your bad reaction.
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https://hair.lovetoknow.com/Free_Wigs_for_Cancer_P...
Dropping in from the Nov 2018 chemo starting pg, found this one link that may help as well. Wording on the Rx for a wig has to be "just right", medical code billing and all that jazz..... Echoing Fritz above...
It has been helpful lurking and reading about your experiences. Thanks to all who have posted...
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Everyone sounds upbeat and ready to be done. I hope the SE's take it easy on everyone.
Notgivingup - the picture is inspiring! I love the smile.
I am in the chair next week on Tuesday. I am glad to hear that the next phase of this might be easier.
Take care and have a good weekend.
Annie
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Great recommendations about the wig, ladies! I do have a prescription for one from my oncologist but did not receive the okay from the insurance company. But I tried to get the referral prior to having a prescription. I'll talk to my oncologist about it and make sure the wording is just right. Thanks for the advice!
Emotionally/mentally, I'm feeling better today. Developed a new SE (fun!) which is tiny little scabs or itchy areas on my hands and forearms. Wth? Looking into using a different type of body lotion. Just ordered from a company specializing in skin care during chemo, called Lindi. Anyone else tried them?
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I have not heard of Lindi. We make our own lotion, which I love. It has 4 tubs of vitamin E cream, a large baby lotion, and a large tub of petroleum jelly. We mix it up in a bowl with a hand mixer. It's not greasy and it has been wonderful on extremely dry, cracked skin.
Anyone having trouble with finger nails? Mine feel sore.
Annie
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Great idea to make your own, Annie!
I haven't had problems with my nails. I've had 4 Taxol infusions. How many have you had? I know it's a common SE with Taxol. Are you using tea tree oil under your fingernails to prevent infections?
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This round has not been good. I actually have been sick. We were going to go out to dinner last night to celebrate our anniversary, that didn't happen. I got sick before we even tried to go.
Today has been a little better. Trying to hydrate. It's not easy, but I'm trying. A lot of foods are not smelling good/upsets me. My husband has been wonderful. I have slept most of the day away.
I also just realized that I may be the only one on Taxotere/cytoxan in this group. I really was hoping the se would have stayed the same. Oh well. Tomorrow will be better.
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Notgivingup I’m so sorry you were so sick that you had to miss your anniversary dinner! It sounds like your married a great guy, and I hope you’re able to celebrate soon.
I’m on Taxotere and Cytoxan, but with Adriamycin thrown into the mix as well. I’ve been sick every treatment on days 2-5 every round so far. I really feel the T is the kicker. It seems like all of the SEs I’ve talked to my MO about have been attributed to the T. I’m in the chair tomorrow morning and I’m prepared to be bedridden for at least one whole day, and pretty worthless until Thursday at the earliest. I hope you feel good tomorrow!!
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Fritzmylove- I am on the same treatment and go in the chair on Tuesday. I hope you will have an easy time. I am dreading round 2.
Notgivingup - I am so sorry. I know it is miserable. If you can't hydrate, call your MO and get another bag of fluids. I had such trouble with taste and acid reflux. Let us know how you are.
Annie
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Good Morning,
Well this has been interesting. I am finally feeling somewhat better. Still tired, taking my zofran, eating small amounts as I can, at least next round I will be better prepared. Glad to be getting on the other side of this.
Fritzmylove and Annie, thank you both for helping me get through this. I hope you both have an easier time this week then I did. Sending you both positive thoughts.
I hope everyone else is having minimal se and are able to enjoy this week!
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In the chair as we speak for round #3. Feeling the most anxious today compared to round 1 and 2 for some reason. Had to pop a Xanax. Spoke with my MO and he feels that the tumor is 70% reduced after 2 rounds (4 to go) and he can’t feel my positive lymph node any longer.
Good luck to all getting in the chair this week!
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You look great, good luck! So glad your tumor is reduced, I go for 2nd treatment Friday nervous but anxious to keep going fighting this
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Fritz, you look beautiful! Shining even with the chemo! I have felt growing anxiety as the day of chemo approaches too. I feel like my body is basically telling me not to poison it. But it's actually for the good in the end.
Notgivingup, I'm so sorry you've been so sick, but it seems maybe you're adjusting a bit with this latest round. Hope it continues to be manageable.
Anyone else going weekly like me? I have 12 rounds of Taxol and I've had 4 already. Whoo hoo! It seems a lot of y'all are on an every 3 week schedule.
Love to all of you!
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Fritz- you are rocking that scarf!! You look beautiful. Your news sounds wonderful. I am so happy for you!
Notgivingup - I am so glad you are better. Be sure and reschedule that anniversary dinner!
Anybody have an amount (ounces) you should try to drink after a treatment?
Annie
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Good Morning Warriors!
I am definitely feeling so much better today. For that I am truly grateful. I will definitely be talking to my MO about my side effects from this last round. Hopefully they won't be as bad next round.
I called my best friend yesterday and told I didn't want to do this anymore. She told me that you have already finished 3. You only have 1 more. You can do this. Let put a plan into place so that you can be better able to handle the se.
She knows me better than anyone else. She has been a huge supporter from the beginning. She knew I just needed to vent/have a meltdown. Then we started laughing at other things.
I hope everyone is doing well. Make sure to eat, hydrate, rest, and exercise(if able to).
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Chiming in from the Nov starting chemo thread - I was told drink btwn 2-3 L a day from the 2 days prior and 2-3 days afterwards tx. I have been trying to up my intake of water and decrease my caffeine anyway so, I do a 16oz bottle of water w every cup of hot tea in the morning (had to switch off the coffee). I usually have 2 cups in the morning.
Reading up on your all's experience has been very helpful! MB1
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Notgivingup - I know exactly how you feel. I had that meltdown after round one. One more. You can do this. I know you can. We are here for you.
MaddieBrie1 - thanks for the information. Hang out with us. We're a great group!
Just finished round 2. They changed my nausea meds and I feel so much different than last time. I left feeling woozy and dizzy last time. This time I feel fine. We'll see tomorrow.
Two down - two to go.
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Chemo #3 take 3 is tomorrow. Yup, yall read that right. Went in on Friday with my anxiety kicking my butt! A lot of waiting around (labs, infusion center behind, etc) finally got in my chair. Then...wait for it...my nurse wasnt in that day. Yup, total meltdown! Charge nurse comes over. We talk for a bit. I told her I was just gonna call peter (that's my doc, were on a 1st name basis now haha). We wait a while with no response. Nurse come back and says she has a way to get a hold of him. I let her know he isnt in on fridays. I get up and go to pee. Come back and my hubby, laughingly, says "docs on his way over". What??? Hes not here on fridays! He says "you scared???" Lol Doc shows up within 5 minutes. Of course tries to talk me into it. Then finally says "look, you're dealing with 2 diseases..BC and anxiety. If the only way I can get you in treatment is to wait til your nurse is back on Wednesday, that's what were doing. GOD I adore him! So I told him I'm bringing an entourage and all staff said bring whoever and as many as you need. So, that's what I'm doing. Hubby and richard,our top employee, are coming with. (We literally call him our cheerleader on jobsite because hes mr motivation). Ya, sounds ridiculous but we do what we have to do to get through this I guess! Richard is very excited to go and keep me pumped up through it all. Weirdo! Ha I will definitely post pics. Lol
All joking aside, you guys are my heroes! I told my doc I so wish I could be "normal" and just handle it! I cant believe how some of y'all go alone, go home alone, parent alone! Again, my heroes! So.. off I go tomorrow. I WILL DO THIS!!
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good afternoon my friends -
Hope all of you are doing as well as can be expected.
Notgivingup - I am so sorry the treatment kicked your butt this round, but it sounds like you are on the other side of the se's finally. I hate that you had to cancel your plans, it's sometimes impossible to act normal and live like a normal person while we wade thru this crap. So glad you have someone to vent to, we all need to be talked off of the ledge sometimes.
I was told that the effects are cumulative, and even though you may have done well with previous treatments, sometimes the se's can hit with no warning, just our bodies having had absolutely enough of the poison i guess. Another one under your belt, though, that's definitely something to brag about. Please reschedule your dinner, it's important to celebrate. You know the routine, drink, drink, eat, drink, rest.
Annie, sounds like you are doing so much better with this round, thank goodness! Please don't forget to take the anti-nausea and drink as much as you can, then drink more. And eat when you can, it's so important. Good luck the next couple of days, you can do this, you are doing this.
Casey, I don't know how you are doing this. I get freaked out enough without diagnosed anxiety, I can't begin to imagine how much worse it is for you. Thank god you have that fantastic sense of humor and a great team, and of course, Peter. You and your entourage will kick ass tomorrow now that you've got the practice rounds out of the way. I'll be cheering for you from here.
Fritz, you gorgeous patient, how are you holding up? 70% tumor shrinkage, are you kidding me? Fantastic news! So happy for you, it's halfway for you isn't it? Take good care, eat, drink, rest, repeat! Kiss the dog and get some rest.
Joules - I have one more round of AC then I start weekly Taxol, 12 treatments, once a week. Super excited for that new batch of se's. Although my MO wrote a prescription for "cranial prosthesis" my insurance will not pay. I don't know if I will be buying a wig, i've been doing hats and bandanas and the very occasional scarf. I did hear that there are a couple of organizations that will reimburse $150 for the cost of a wig, but I don't know if I want to spend that right now. I've been missing so much work b/c of appointments and tests, and all of the bills are starting to roll in from this past month...it makes me absolutely sick with worry. Ah, well, not much I can do to fix that particular problem, so it is what it is.
20th anniversary for me and husband tomorrow. Gonna do something fantastic like order food to be delivered and watch Netflix in our pj's. Still feeling super tired from last week's treatment, still battling crazy heartburn, still bald. We will celebrate properly once this mess is behind us.
Hope you all are taking good care of yourselves, we've got another week under our belts, let's keep moving forward and get it done.
Thinking of all you amazing warriors.
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Hey guys...just wanted to chime in on the reflux. Mine was SO bad. It literally hurt to drink water. I got a rx for omeprazole. Completely gone! It took about 24 hours but what a difference. Hope this helps. Oh, and you dont need a rx for it either. OTC as well. Good luck
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Patrice, happy anniversary!! Netflix, food, and jammies sounds perfect!! Yes, halfway for me.
Casey, I hope you’re able to complete #3 tomorrow. Anxiety is no joke. I’ve been battling it for the past 2 years unmedicated with just therapy, but the cancer diagnosis made me take the leap and start meds. Wish I would have done it years ago.
What is everyone eating during the days following chemo? I’m always so nauseous, and I feel like I live on crackers for days. But then my body craves vegetables and whole foods.
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hey everyone!!!
It sounds like many of us are slowly but surely getting through this. This chemo thing is no joke. I’m day 7 past AC#3. AC#2 was rough, I think because I didn’t as much as I should have. I tried so hard to drink more with AC#3. I’m finally feeling like I may be on the other side of the SEs. Nausea was the worst.
Wearing a wig and a halo with a hat on top when I’m just lounging around. I found it online for 40 dollars and am really impressed. You can wear whatever hat you want on top. I’m on week 3 of wear and it’s holding up.
I’m doing AC#4 the day before thanksgiving but only because I am so so so ready to be done with AC.
I got the sniffles today or a head cold. Anyone else have one? Lots of sneezing. Maybe I’ll continue with Claritin to help clear it up.
I’m so happy to hear of everyone’s shrinkage!!! That’s just amazing!! I had surgery first so am missing out on that feeling but love love hearing those stories!!!
I asked the lady whether I can keep the last vial of AC and she thought I was kidding. But I’m really not. I plan to use it as a souvenir or maybe plate it in gold because I think we all deserve a gold medal for getting through AC! My husband said the worst thing is seeing that red stuff being pushed into me.
KC, I am so excited you’re back on schedule. I can imagine what it’s like to be battling both at the same time. But I agree, sounds like you have an amazing staff.
Patrice, I love reading your positive messages. They are always so uplifting and make coming to this blog an even better place.
Thinking of everyone today and always. Let’s keep going!
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