Starting Chemo July 2019
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Hi,
I haven’t posted in a long while. It looks like everyone is moving along through treatments fairly well.
Rubydream, i would imagine your eye styes are an SE, even if it’s not a listed one. Just another symptom of a compressed immune system. Let’s us know if how you are getting along.
Melmax, you are right...it will be probably a year with no hair. Now, with that said, I have been loving how quickly I can shower and get out the door with my bald head sand wigs. I was able to get a beautiful wig for free from our cancer clinic’s angel program (slightly used wigs for free) and I bought one from Headcovers,com. I also have a $70.00 coupon with tlcdirect.com. That is offered through our American Cancer Society. I’ve learned that giving your wigs a shampoo and wash can really soften them up!
Jjpope, I’m interested in hearing how long between chemo and surgery also. I’d love to have surgery before Christmas. My last chemo is Nov. 14th and I have all three kids and family’s (a total of 7) coming for Christmas. Am I crazy to think I could have surgery the first week of December and be ok by Christmas? Otherwise, I have to put it off til afterwards and that is a long way off.
I’m through treatment #2 and the MO has me taking Lomotil prophylactic to see if I can ward off the severe diarrhea I had with round #1. So far so good but only on day two. On a positive note, I have seen a dramatic reduction in the size of my mass since I started treatments which I’m thrilled about!
Stay strong fellow warriors!
Jul
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Update on wig shoppingLeft is my real hair - Right is the wig.
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Melmax wow I didn’t know it would take that long for our hair to grow back 😳😳 not sure what I thought but def not that long 😥😥 and you look great with the wig!
Flnana2 my surgeon said 4 weeks after chemo as long as blood work is ok to do surgery. If you have that much going on I think I would wait. That would be way too much in my opinion. Im so glad you’re doing good and that you see a difference ❤️❤️
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Well done Melmax! Your wig looks great! Hard to tell the difference!
Jjpope, I didn’t realize it was blood work that would determine when I’d be ready for surgery. Makes sense. If it is 4 weeks then I’ll wait til after the holidays for surgery.
Starting to feel a bit nauseous this evening but meds are controlling the situation so far.
Hope you all enjoy a wonderful evening and a restful Sunday!
Ju
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Well, it's chemo #3 for me today and thanks to the anxiety and steroids I am wide awake way too early in the morning. I noticed that the hospital screwed up my pre-chemo blood work on Friday so I hope this doesn't cause problems. 3 of the 5 tests were mislabeled according to MyChart. My neutrophils were in the normal range, but not as high as the two previous times. Trying not to stress about that.
We're keeping the Taxotere at the 20% reduction, but reducing the Cyclophosphamide by 20% as well. She is planning to discuss with the pharmacy about whether to include steroids along with the Benadryl during the infusion. She also wants me to start taking the morphine the night of chemo to get ahead of the pain. I'm to continue taking the Claritin and Benadryl for both the bone pain and any allergic reactions.
She also told me to use the Benadryl for sleep if it is working. And the rash on my arm near the injection site was definitely due to the chemo.
I'm really nervous about this one given the reaction I had last time.
Both my oncologist and surgeon agree that I do not need radiation if I am having a mastectomy for the BRCA1 mutation. They also agreed that I should be able to have the mastectomy and reconstruction at the same time.
My surgeon is referring me to a plastic surgeon to discuss reconstruction options and to a gynecologist to discuss the oophorectomy/hysterectomy. I will meet with the surgeon again in the middle of September (once chemo is over).
While they do want me to recover from the chemo, the first surgery could be as early November. The breast surgeon said it was best to have the mastectomy within the next year. I just want to get everything done and start moving forward with my life, so I hope to have at least one of the surgeries completed before the end of this year.I hope everyone else is doing well with minimal side effects. I read the posts daily but just haven't had the energy to draft a post. I did make it to the wedding reception on Saturday and lasted almost two hours. Was so grateful to get that wig off. 😜
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Fairydragonfly, you look beautiful in your wig! So glad you could get out for a few hours. I went for a drive with my husband yesterday just to get outside. It helps! As far as benedryl and steroids during/before infusions, I get both every time. I also then take steroids orally starting the night of the infusion twice a day for three days. While I hate the side effects of steroids I do think it helps with nausea. I’ll be interested in hearing what your PS has to say in regards to timing of your surgery after chemo.
My MO just ordered a pelvic ultrasound to find out why my right ovary is so enlarged. No pain but definitely want to figure it out. It was caught on a CT scan and the radiologist thinks it is a cyst. I go for that next Thursday at which point I’m hopeful that the SE from this last chemo will be mostly gone. Taking the lomotil before having any diarrhea seems to be working! Just have the overall Ill feeling now which isn’t bad 4 days post chemo.
Hope everyone has a good week ahead!
Jul
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fairydragonfly
Thinking of you and praying for minimal or zero SEs during and after your third round. Love the pics and you’re rockin the bald and the wig. 😊
Not feeling well today. Fatigue and hard to stay awake. Chemo Fridays for me so this usually pops up on Sundays andgoes away on Tuesdays.
Hope everyone has a good week.
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Mel that wig is close enough to your old hair people won't know the difference. They'll think you styled it a wee bit differently or got it dyed a little lighter. --if they even notice anything at all.
Fairy D- aww lovely pic of you and the happy couple! Taking off my wig is the new best thing compared to taking off my bra. I look forward to the day not tooooo distant from now when I will have hair again and can be wig-less and bra-less all the time :-)
JjPope. IMO you could swing Xmas if you are the type that can delegate most of the work to your visiting family and if you are the type that won't feel like you must *entertain your guests* if you can leave everyone to their own devices as needed and if you can get the surgery done so that you have about 3 week post surgery b/4 Xmas itself rolls around I think you'll be fine. :-)
My penultimate A/C is coming up on Wed. Can't wait to check that day off- then only 1 more to go on the 'red devil'
I have to share,this weekend, for the first time since I had surgery and chemo, I ran 2 miles! 2 miles on Sat and 2 miles on Sun. It was so wonderful- I was afraid with Chemo I might not be able to run until next year, so this was amazing. Before I had surgery I have been running for years, and for the past few years I have run 6-7 days a week. Anywho just had to share my weekend joy (I will have to remember it and remind myself I will have another good weekend when I'm having a crappy time post #3 A/C later this week. :-)
I hope everyone has a great Monday!
xoxo Victoria
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Flnana2 - my left ovary was six times larger than my right in an ultrasound in February. Then with this breast cancer crap it was forgotten about. My oncologist is sending me for a follow-up ultrasound as well. My prophylactic hysterectomy may become my next priority. I also take oral steroids for three days
Melmax - no reaction this time, so yay! I did have to redo the blood work though. Hope the fatigue lessens.
Victoria - wig-less and bra-less - YES! And way to go on getting those runs in! Must have felt good.
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2019whatayear, looking at December schedule i think I'm going to see if he can do my surgery on the 9th. I work for the state and we get 3 holidays for Christmas and 1 for New Years so i stead of using 160 hr sick I would be using 128 and I won't have to pay anymore deductibles. So I'm hoping I can swing it!! Husband is against it but I think it's a a no brainer.So hopefully it will work out.
Fairydragonfly glad to see you post, was getting worried about you! Thankful you're better this go round.
Had my last A/C yesterday 🙌🏼🙌🏼 4 more taxol and I'm done 🙌🏼🙌🏼 I'm so hoping that when they say the last 4 is easier that it is easier. I'm so ready to be over all this!!! The last 2 weeks have been really bad for me emotionally. I was so thankful for the last 4 days because I finally felt a lil normal and not feeling bad and exhausted. Man when your thoughts take over it's a dangerous thing. Then I feel guilty for being so upset when there's billions of people out there that have it 10 billion times worse than me.
Did speak to PA and she ordered bloodwork for iron and vitamin D to see if they are low to maybe help with being so tired. I asked if there was any vitamins I could take to help and she said not really. I've been drinking vudoo juice 😂😂 it's a nija red something drink by young living and has tones of things we need to help and I think it may be helping so I'll keep you updated on that. Taste isn't too hot but I just chug it and drink something behind it.
Melmax I hope you're feeling better today
Much love to each and everyone of you and hoping each day is easier 💕💕
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Just a lil something from my Max to make you smile. I found this dog in September and now I know why God brought him in my life. He is the one that is by my side 24-7. I always have him in the ups and downs. And boy has he gotten fat since I’ve diagnosed in March. 😂😂 the sorriest lil dog, loves to sleep and be under the covers.
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jjpope1
Definitely got a smile from me 💕😊
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Max is adorable! My girl Gypsy is always right beside me when I'm not feeling all that well.
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starr42 that face lol so cute ❤️❤️ It’s amazing how loyal and loving they are. I don’t know what I would do if I didn’t have Max by my side.
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I've been off the radar for awhile. We booked a trip in January for a trip with the extended family from the UK to Dominican Republic. Had to cancel when cancer diagnosis arrived. Still planned for the kids to go without us. Our niece Gina (from the UK) was kindly willing to escort them. I had no idea how I would feel on chemo. As it happens, two days before the trip I was feeling great 5 days post chemo. I had a thought, what if we just went!!! We booked the trip very last minute, surprised the kids at the airport and the family at the resort. Then got upgraded to the honeymoon suite. Just want to say, you can have the best days of your life ... even on chemo.
Then back to reality Monday night. Last AC done yesterday. I wouldn't wish it on my worst enemy! But it's a necessary evil. I'm the type of person who hates to even take a Tylenol, so the thought and feeling of those drugs going into me is quite horrific. I have to try to snooze/meditate my way through the infusions. Anyway, now onto 12 weeks of weekly Taxol. Then 6 weeks daily radiation. Some reconstructive surgery and ovaries removed at some point. Counting down to resumption of normal routine, but quite enjoying the time with family and being able to travel when we can. We plan to go back to UK for Xmas, which is something I never get to do as a nurse. The holidays are always busy work times.
Speaking of hair, I'm not shiny bald yet. There's a fine layer of stubble still firmly attached. I did go bald on vacation when around the pool/sea. Otherwise I wear bandanas or a wig for going out on a special night. I just bought a crazy blue wig for fun: https://www.wigs.com/collections/womens-wigs/products/out-of-the-blue-colored-wig-hairdo
Melmax ... your wig is AMAZING!! Such a good match with your natural hair! Now to backtrack on this thread and see how everyone's doing. I have a lot to catch up on.
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britgirls
“I'm the type of person who hates to even take a Tylenol, so the thought and feeling of those drugs going into me is quite horrific.“ I understand this so well! My family physician gets so upset with me because I refuse any prescriptions or meds unless it's absolutely positively necessary. I'm not exactly anti-meds but thyroid medicine is the only thing I ever took before BC
And now....I sooo want a blue wig! That's fantastic! 😊
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britgirls AWESOME AWESOME AWESOME WIG 🙌🏼🙌🏼
I’ve done good this week except for food and drink again nothing taste good at all 😩 but woke up this am and my throat is red and has white spots. Going to call and see if MO will call in some of that mouth wash.
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Add me to the previously I was able to avoid drugs club! My medicines of choice are running and eating food to get my vitamins and daily sunblock :-)
Britgirls thank you so much for posting. What a great adventure! I'm so happy you went and had a wonderful time! It makes my heart grow two sizes whenever I see happy stories here. :-) And I love your blue wig! So cute!I have to say that like the rest of the world before I started chemo I thought it would be 100% horrible 24/7 - not being able to enjoy anything. Knock Knock on wood there are many days where I feel "normal' and not bad at all- I hope we are all having some of those days more often then not !
Jjpope Ugh that sounds like strep- it's in your throat? does your throat hurt? If it was on your tongue or mouth then it would prob be thrush. I hope you feel better very soon! You can rinse with warm saltwater or diluted hydrogen peroxide - but check with your doc before doing (0bvi)
I got a very thin silk cap off amazon to wear under my wig to help with itching. I hope it does the trick. I find its helpful not to touch my head while wearing the wig otherwise it gets more itchy. I also find it helps not to think about how long it will be before I won't need one at work!
Love the dog pics!
Hope everyone is having a good day!
xoxo Victoria
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day 5 of chemo #3 and it is so hard to remember this is all temporary. I hate not being able to get stuff done. I feel lazy even though intellectually I know I am not being lazy. Jjpope1, we have a 17yr old cat who snuggles with me every night or when I nap. He hates my husband. When I shaved my head, he would no longer look at me or lay without me and started laying with my husband! I felt so rejected! He is finally warming up again which makes me happy!
anyone have any tips for not worrying about all those things that have to be done? It seems like days 3-4 I just feel awful so I rest but then days 5-6 I feel better but not better enough to accomplish anything. I start to think about all the time passing by and all the things I’m not getting dinr
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Rubydream I'm right there with you. It's hard to not be able to do things. I try to give myself extra credit for anything I manage to do-a metaphorical gold star :-)
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rubydream
I just keep telling myself over and over that I’m doing my best. There are days I can’t do anything when I tell my son to make a sandwich and fruit for dinner. Then there are days like this past weekend where I was able to do yard work, house cleaning, and cooking. We are our own worst critics. I was feeling horrible for not being the superwoman everyone is used to. I’ve learned I don’t need to be that person anymore. I’m crying as I write this...not tears of sadness or self pity, but tears of strength. Knowing that I’m fighting for myself now. You are loved rubydream no matter what you can or cannot do right now. You’re not lazy. It takes a lot of strength to getthrough this.
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My last round of AC hit me much harder than the others. I was literally just lying on the couch and existing for a few days. My RBCs have started to drop. Feeling okay today but pacing myself.
Does anyone else have a strong chemical taste when they flush the port with saline? It is VILE! It's like getting a mouthful of nail polish remover. It's so bad I'm feeling like I will throw up the next time it happens. I'm a nurse and have only had a couple patients that reacted like that. They insisted on having a mint or hard candy in their mouth before the flush.
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Hello all! I am new to this thread so sorry if I am jumping in. I started chemo on July 25th and have made it through three rounds now. I am going every other week for the first two months and then on to weekly infusions. This feels like such a long haul! I should be done in December which means I will be able to start the new year with surgery. Fresh start. This last round hit me pretty hard but I can't tell if it's feeling crumby or a bit of depression. Probably both. I have been working through most of my treatments so far, which is tough but I have a great group of co-workers that are really understanding. This whole process is just starting to get me down a bit - I want to feel normal again.
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britgirls and deanders
My third round of AC took longer than my normal couple days to start feeling better. I’m sorry to hear it’s been the same for you both. 🙁 My last one is this Friday and I’m trying not to think about it. I don't have many individual side effects it's mostly just no or low energy and falling asleep whenever I sit down to rest. My blood work is great so it’s just the poison doing it’s thing I guess.
britgirls I have that taste in my mouth when they flush the port. 🤢 it’s horrible.
deanders We understand about wanting to feel normal again. Hang in there girl. 💕🙏
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Welcome Deanders, I think we would all agree that it is a long haul. Personally, I won’t be through till July 2020. I definitely don’t focus on that though. I like to break it down into sections and my first section is over November 14th...much more doable. Surgery is after that.
Jjpope, I hope you were able to figure out what the spots on your throat are..please let us know how you are feeling.
Britgirls, first of all, kudos to you for taking your trip. I’m curious if you told your MO you were going? My MO is barely ok with me flying to New Hampshire for our daughters wedding! Your blue wig is great! Yes, that flush is vile...
Rubydream, don’t beat yourself up...you aren’t lazy. These are serious drugs you are being infused with and you need to give yourself time to recover and heal I go every three weeks and find I have one crappy week and two good weeks in that time span.
2019..I love the gold stars! I should make a poster for myself like I did for my kids and give myself gold stars for accomplishing ANYTHING!
Melmax, congrats on getting your last treatment this Friday!
Hang in there, be strong and give yourself a GOLD STAR!
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Deanders, welcome . It's a long slog we have isn't it? I just found out I have been recommended for radiation. Which sucks. The BMX plus the axlilliary dissection plus the chemo should be enough to address the cancer I had. I don't want my left arm more compromised and I don't want radiation by my heart since it's already possible it could be compromised by the AC . :-( So I"m stuck in treatment into 2020. Bah!
Also this AM I found out that my husband didn't understand that I have 4 A/C PLUS 12 taxol. He thought I was done with chemo after next Wed. Sigggggghhhhhhhhhhhhh.
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Hi Ladies, I read on a different thread that to stop the bad taste in your mouth it helps to hold your nose/breath when they flush the port. I've been doing that and it seems to help.
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thank you all!
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HEY HEY HEY it’s been a lil while 🥴🥴 the magic mouth washed i used its finally cleared up for the most part. I had a cough and sore throat for a lil while but I’m good. Taste is a lil better today so hoping the next few days will be normal. My RBC’s were low this week. They checked my iron and vitamin D. At first they say iron is good and D is 15 should be 30-100 so now I’m taking high dose of D twice a week. But get this they call yesterday stating they need to schedule iron infusions ordered by the doctor and approved by the insurance. But you told me last week it was good. So are you wanting me to do this because my iron is low or because insurance approved it and you make money? I asked again why was I told it was ok and now it’s low?? She said it was a lil low but not terrible so that’s why MO ordered it. So now I have in my head is it about money or do I need it??? What do y’all think?? So next question I saw this company Monat let it grow system and testimonies on hair growth after chemo and amazing. So I reached out to a girl I know who posted it. She said her friend uses it due to chemo and its worked great. So I ordered it shampoo and oil like 84.00. Get it today and so I start doing a lil reading and it looks like estrogen is in it. I’m almost kinda scared to use it? Have you ever heard of this product. Why would other chemo patients use it if it weren’t ok 😩 so many questions.
Welcome deanders 💕💕 look girl our mind is a dangerous thing! The last couple of weeks were tough on me. All I could do is cry and was literally ready to quit. I was so tired of feeling like shit and exhausted and all I could do is lay there. TRUST ME WE ALL GET IT!!! On top of all that I felt so guilty because I know billions of people have it 10 billion times worse than I do and I’m laying here crying and wanting to give up. How dare I be so petty and selfish. So yes we can and will get in a funk. But the PA looked at me and said Jessica stop. You have every right to feel any kind of way and you’re not selfish. You’re taking one of the highest regiments of chemo a person can take so you have every right to feel like you do. That helped me! And this is my down week and I’ve done better this week mentally. I don’t have enough energy to go walk or anything else. I’m still working so it’s all I can do is get to work and make it back to the bed. It’s nice to have this group so you can talk, vent, and we all relate and understand. And we don’t have to put a brave I’m ok front up when we type up here. We are all in this together and WE WILL MAKE IT!!
Rubydream same advice to you 💕💕 I def understand what you’re saying about your cat. But I think they sense the chemicals. My Max slept with me all the time under my arm like a baby and then stopped and I about had a heart attack. I honestly think he could smell the chemicals. It took about a week and then he was back PTL 🙌🏼🙌🏼🙌🏼 I would say that happen around my 2 or 3 treatment. About the things piling up, 🙋♀️🙋♀️🙋♀️🙋♀️🙋♀️ That’s sooooo me! It’s like I’m the only one that’s going to take care of it and pisses me off that I have to. I have a grown man and a 13 yr old boy that should step up and do more. They swear I don’t ever ask for help before all this started and I didn’t because they either would forget or do it wrong, I’ve said something repeatedly now needing help and it’s like pulling teeth. Why in the crap should I have to ask help for anything 🤬🤬🤬 So I have to pace myself. And trying to do it when I first get up helps because I’m not so exhausted YET 😂😂 and trust me I’m a OCD person but right now that’s the best I can do.
To all the others I hope you are doing the best you can physically and mentally. Love each and everyone of you and thankful for our little group ❤️❤️
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