Starting Chemo July 2019
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Genetic testing - breast cancer gene test results today - all negative 🙌🙌
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Hey J!
All I know about Monat is that they have had a lot of complaints of hair loss and scalp sores, etc. There are some class action lawsuits. Personally I wouldn't use it. - esp with the estrogen. I have too much of that already. I had me period 2x since chemo started-- I mean come on ovaries SHUT DOWN! Also, why does it have estrogen in it in the first place. Overall in my research I didn't see that there is much for regrowing hair lost to chemo, so I guess the market isn't big for that, hopefully because it grows back so well on it's own? (fingers crossed) I will say I'm am very over not having hair. Today I had my work wig on and I wanted to go for a walk at lunch but it was windy and I just wasn't up to having my wig snatched by Mother Nature.
Also I'm with you on the Iron. Iron supplements= constipation and I'm not a fan of that at all. If it were me I'd say let's hold off on the Iron and see how I do. Avoid constipation is one of my top priorities in life.
Re. pets. We have a big puppy. He is clueless. He doesn't get when I do feel well he just wants to play or jump on me OY! And so much for that whole dogs can sniff cancer thing. He never tried to sniff my boob.
LOLBig gold stars to everyone who made it thru work today or just managed to get up and take a shower !!!
xoxo
Victoria
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that’s AWESOME news Melmax
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Great news Melmax! Negative tests are such a relief! Thank you for taking the test all that data helps !
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Hello all:
Thanks so much for the tip about holding your/breath(nose) while the saline is being flushed. God, I hope it works because I am just traumatized by the whole thing. That taste ... I just can't anymore. Just thinking about it keeps me up at night.
Like many of you, I've done the four rounds of AC and now will start 12 weeks of weekly Taxol. My first Taxol infusion is next Weds (Sept 4). I had a peek on the Taxol thread and they seemed angry. Eeek! I'm still hoping it's easier than AC.
Melmax, so happy that your gene testing showed no genetic link.
Also ... can't remember who asked, but no ... I did not tell my MO that I was going on the trip to the Dominican Republic. I just rescheduled my appointment with him. He'll find out next time I see him.
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Sooo, I am day 9 of chemo tx #3, TCHP. I've had really really awful diarrhea this time. On day 5, I got IV fluids just as a precaution and it almost seemed to make the diarrhea worse (I know, not possible) Day 6 my husband called the nurse because I was still in bed most of the day. I had been taking immodium which worked during the last chemo cycle but this time it is not touching it. The dr called in a prescription for lomotil (??) and it is not helping at all. I've been avoiding eating because like clockwork, I'm in the bathroom half hour later. I called the nurse again yesterday and she said to take both the prescription and the immodium together and it should resolve. Well, guess what, it has not. I know they are going to want me to come in for IV fluids which I don't want to do. Anyone else deal with this? Anyone have their chemo decreased as a result? Husband is worried they will decrease chemo which he does not want but obviously he respects that Im the on dealing with it.
eta: the stomach pain and turmoil is awful too!
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Rubydream...Boy do I feel your pain. I'm on TCHP also and my first round sounds like what you are you are going through. It's the WORST! I ended up in the ER completely dehydrated. My MO wanted me to come in for fluids but I thought I could handle it and declined because I had no idea how I was going to travel 30 minutes to get there when I couldn't go 15 min. without using the bathroom, They called in a prescription for Lomotil which at that point didn't help much. It did finally clear up but not after I'd lost a lot of weight. So, for my 2nd round my MO had me start Lomotil on the day of my infusion and continue for 14 days, 4 times a day. That worked. I still had stomach pain and nausea but the zofran took care of the nausea and the pain I just dealt with. I literally had no diarrhea. I did go in for some IV fluids 4 days after my 2nd infusion even though I didn't have the diarrhea but he wanted me to do it preventative. I go in for my 3rd treatment next week and will definitely be taking the lomotil the day of infusion and for the next 14 days. It doesn't make it easy but definitely doable. I think the key is getting the Lomotil in you before it starts. Good luck to you. I'll be praying for you as I know how horrible it is. Just FYI, I thought my MO was going to cut my chemo amounts also but he didn't.
Stay strong...this too shall pass..
Julie
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finana2 thank you so much! Strangely it makes me feel better knowing someone else went through this. I definitely agree that getting ahead of it is the key but for right now I just want it to stop! I typically would go to acupuncture which would help ALOT but my girl is on vacation! (she agreed to never go on vacation again until my chemo is done!)
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ruby, this is my first round of THCP. I had zero stomach issues until day 5 and then vomiting and diarrhea. Today is day 8, and the diarrhea has been less frequent, but like you said, if I eat, then I have to go an half an hour later. I didn’t know food could travel through your system that quickly. Even a single cracker sets me off. When it first started, I thought I might split in two. It's bearable now, but I don't think I can afford to lose anymore weight. I thought by day 5, I would be through the worst. Helpful to know that I’m not the only one that this happened to.
Finana2, I will do things differently next time thanks for your help
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4th and last round of AC today. Went well no issues. SE should start in a few days. Mostly what others call fatigued.
I just caught up on the latest posts and agree. Taking the meds before SEs start is key. Too bad we don’t know what our particular SEs will be until we go through that first treatment 🙁 Grrrrr. Mine was constipation so I learned that taking the meds when i got home and for two days after worked for me. Reading everyone’s experiences has helped so much and I’m grateful to each of you.
My next appt. is in two weeks. Meeting with the oncologist to discuss whether or not I’ll be starting Taxol. He said at our last meeting there’s a possibility I won’t. Praying that this tumor has shrunk and I can move forward with the lumpectomy.
Prayersfor all of you! 🙏 ☮️ 💕
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all my fingers and toes are crossed that you can skip the Taxol Melmax!!!
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shelligirl- definitely lasting much much longer than expected. And same with me and the cracker situation. It stinks that the foods which are good for diarrhea are also the dryest and difficult to swallow foods. I have such a hard time wrapping my brain around taking medicine before symptoms begin.
Melmax, will they do an ultrasound?
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2019whatayear thank you! 💕
Rubydream not sure what the oncologist will do. This next appt is to “talk" and see where we go from here. If he doesn't send me straight to infusion for taxol on that same day then I'm guessing he'll order another mri or ultrasound. The surgeon wanted the tumor to shrink before surgery and the oncologist told me 4 rounds of AC MIGHT be enough. This process is so darn complicated. 🙁
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I've been offline for a couple of weeks now, but still following through email. A heartfelt congratulations to those of you that are finishing AC! For those of you now moving on to Taxol, I think you'll find the SEs are somewhat different than for AC, at least seemingly less problems with nausea. I've had a weird combination of SEs, much to the disgruntlement of my MO and her staff, who continue to say, “oh, we've not seen that before!"
Three weeks ago, I had to skip my 7th Taxol treatment because of an endoscopy and colonoscopy (both normal), and so I feel kind of like I started all over again. My first treatment back was all three Taxol, Herceptin and Perjeta! Yikes. However, in the time I was off Taxol I gained back four pounds, my nose stopped bleeding continuously, the diarrhea improved and my sun rash went away. This week however, two weeks in, the SEs retuned - oh joy.
Because I have both DCIS and IDC, neither my MO, nor my surgeon think it likely that I will be completely disease-free at the end of my chemo. And because I have small breasts and the DCIS and non-focal enhancement area is right behind the nipple, I'm most likely going to have to have a mastectomy. That is still a bit of a shock to me - that sense that I won't be “whole" again. Very odd. So having talked to the plastic surgeon, I will have a DIEP procedure at the same time as the mastectomy. I have to say, the surgery scares me almost as much as the chemo did to start with!
Luckily, before I have surgery, my husband and I get to go to Hawaii for a wedding! I may not have much hair, but at least I'll get to actually enjoy the sun.
I received a card this week from a family friend with the quote “Life is tough my darling, but so are you." That applies to everyone of you ladies getting through this period in your life!
Hang in there!
Diane
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so FYI I received some “special” brownies from a neighbor and they resolved the diarrhea issue within an hour. I am not giving medical advice, simply sharing my experience! First time I ate a whole one and that was waaaaay too much. This morning I had 1/4 of one (about the size of a quarter of the brownie was smushed) which seemed to work. Like I said, not medical advice but after a week of nothing else working, I wanted to share!
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Glad you found something that made you feel better Rubydream!
-Victoria
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Got my last A/C treatment yesterday! I'm leveling up to the next big boss Taxol.
I had this idea the other day, a modestly brilliant idea if I do say so myself....LOL
12 weeks of Taxol...12 days of Christmas...
Hey I'm going to do my own 12 weeks of Taxol. I'm scheduling a weekly treat to help my through the slog of treatment.
Week 1, I'm going to use an audible credit to get a book I want to listen to....
Week 2 , I have lunch arranged with a friend
and so forth I figure it need not be anything pricey, just something that is a treat to me.
Please steal my idea and treat yourself for each treatment you do!
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2019whatayear, I LOVE that idea!! The Lion King soundtrack got me through my first of 12 weekly Taxol chemos yesterday. I hadn't seen the movie since I saw it in the theater in '94. My God, it's still SO FREAKING GOOD!!! Watched it with my daughter this past weekend and am now obsessed again.
BTW, so far the Taxol is chemo lite compared to AC. I felt great yesterday and still feeling normal today. I'm taking it day by day, as I've read on the Taxol thread that most people start feeling the fatigue on days 3-5 and it's a cumulative fatigue. Some have described reaching week 12 and feeling like they're walking through wet cement. I'm focusing on eating lots of iron and protein rich foods and try and keep that fatigue at bay. Taking it day by day.
But still I'm pretty damn happy to be feeling this good right now. Because on the AC, I would feel awful right after treatment and it really took a toll. So glad that is behind me.
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Hi everyone. Monday is my final TC. Yay! Physically, my third cycle was better than my second. Mentally, I have been struggling. I only recently started coming out of my funk.
I hope everyone is doing well with minimal side effects and that we will all be ringing that bell soon.
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Thinking of you all. I'm taking cookies to the chemo ward tomorrow courtesy of an amazing baker, who in the end refused my payment. I'm all choked up by the kindness of strangers, especially given how rough I have been feeling the last two weeks.
http://www.sugarsugarottawa.com
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OMG this Taxol has taken me down for the count. I had treatment Weds and did good weds and thurs. I’ve been down since Fri and still hating life 😩😩 my husband thinks I over did it with the hurricane and helped prepare food for our fire dept. if that’s all it took to make me feel like this I shall not exist for the next 3 treatments. Bad headache and horrible body pain. Sat headache was better, still shooting pains in my back, my stomach like I was having continuous contractions, and feet hurt. Yesterday still horrible stomach pains and all I could do is lay there. Today still fell bad and stayed home. I just wish I could get over the hump! Started back on the mouthwash because my tongue burns.
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Fairydragon those cookies are amazing! Hope you feel better this time around knowing you are done-zo!
Jjpope. I hope today gets better SE wise. xoxo
Britgirls how are you doing?
Everyone else- I hope you are having a very nice monday!
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Just Lovvve those cookies, Fairydragonfly. How sweet of them to not charge you. What comes next for you now that you're finished with chemo? I start my radiation this week. Can hardly wait for this to be over.
Best wishes to all of you going through this journey. Prayers and hugs. Pat
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I think they're gorgeous too. I get to skip radiation because my next steps are prophylactic surgeries due to my BRCA1 mutation.
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Hi jjpope1,
I’m sorry to hear that the taxol is hitting you so hard. I hope you’re on the upside soon. I was wondering if you’re doing the weekly treatments or a dense dose (every other week for 8 weeks total). My first taxol is September 12th & it will be dense dose. To say that I’m nervous is an understatement! Any advice from you and the July crew will be greatly appreciated.
Nice to meet all of you lovely ladies,
Cath
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That's a wrap. So glad to have this part done. ❤️
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Loved the way you rung that bell, Fairydragonfly. I rang the check out of mine too back in July. What a good feeling you must have, I know I did. Hoping your se's are kept at bay this time around. Do you have a surgery date yet?
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No surgery dates yet, as they've prophylactic and I can wait and recover from chemo longer as opposed to someone who still needs surgery to remove cancer. I'm seeing the breast surgeon on the 20th of September and the gynecologist in the middle of November.
So far I'm good. Slept well last night and feeling calm today. Last chemo zen?
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aww Fairydragon - thanks for sharing xoxox!
Imo surgery much easier than chemo ! You will do great!!!
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fairydragonfly 🎉🎉🎉💕💕💕 WOMAN I AM SO PROUD OF YOU AND SO HAPPY FOR YOU. YOU MADE IT, YOU FINISHED, YOU ARE A FIGHTER!!! Much love and hugs to you ❤️❤️❤️
Chicat25 welcome!! I’m still not great but I’m better. I will have 4 treatments of Taxol every other week. Just did 1 and 3 to go. I had 4 rounds of AC prior. The best advice I can give is read read read. Get as much info as you can, read the what to have get do from there forums. That helped me so much especially since I didn’t get any of that help and info from the MO’s office. I think the hardest part for me has been I feel like crap and can’t do anything then feel guilty because I know so many other people have it so much worse than me. Allow yourself to cry, know things are going to suck, know your normal isn’t normal anymore. Do what you can when you can. And yes I’m still not good with that last one 🤬🤬 We are all here, we know when no one else knows how you feel or think, don’t feel alone because WE ALL FIGHT TOGETHER. We are all different in everything but i love that I have these women to battle with💕💕💕💕💕 You’re not alone and you will get through this
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