Weekly Taxol group
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Margun. That is almost exactly what Nat experienced just a day later!! So thank you for that info!! We were just scared because of the weird diverticulitis. We think it is more related to the chemo which is actually a relief!!! Thank you for sharing!!
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On genetic testing - my mother had breast cancer but my MO never suggested it. My RO wanted to know why I hadn't had it. My daughter is high risk but they will not test unless I test positive or if I was triple negative (I'm Triple postive.) I am so confused on what to do.
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I had incredible restless legs and nerves because of the Benadryl... They switched me to something else (in pill form) because of it.
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Margun - I had heard of the fat grafting but not this procedure. I would probably look at this as option if it's not a separate procedure and they are using skin already in the area.
Jrominger - I hope Nat is doing well with the SE.
Annie - my BS said that my insurance would not pay from genetic testing (:() but I did not have such a potential genetic component either. I'd push it with whatever Dr you can get to order it.
mpv - they slowed my benedryl down to a crawl and that helped with the leg twitching during the infusion. I do have a little residual muscle twitching later in the evening though. They wouldn't switch me to pill form
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Today is 2 weeks post Taxol and the 1st time in 14 weeks I don't have treatment (had H&P last week). My side effects are starting to subside. I've had more energy this week and less intestinal distress. I have a few hairs growing where my eyebrows were. I also have miniscule lashes coming in. My nose isn't bloody any longer and not running as much as it had. I've stopped the Claritin and Flonase.
Hair is filling in but still growing extremely slow. My hair pre chemo grew an inch a month. I don't even have a half inch of growth and it started coming back while on Taxol.
Hoping everyone still on Taxol have minimal SEs and I hope everyone has a wonderful weekend.
🤗🤗🤗
Dawn
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dogmomrunner-when you read or discuss with Goldilocks details with your surgeon let ne know what you think. I think it is good idea but given that is relatively new procedure I could nfind few people who have done that. So I like to know other people pers
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Dawn- I am happy the annoying se are decreasing. I do not remember if you had bone pain. If yes they are going away as well? I have those and I am hoping they will disappear after chemo treatment s over.
In your last picture your head was full of hair but white like mine but mine is not dense yet. I asked pharmacist when I colour my hair if thevwhi oersists and she said after 2 weeks with gentle products. I do not know if you gathered info on that or the white does not bother you as much it does to me.
I want wish you successful surgery on8/8 and fast recovery. You are having nipple soaring mastectomy as I recall. Do it include a reconstruction during the same surgery and is that reconstruction requires implants? I my previous posts I indicated about Goldilocks and I would like better understand the difference between that and nipple Nd skin soairomastectomies.
My surgery is after yours and I started gather info what I must prepar or have before it. I have been advised to buy sport bra zipped at front or pulled over head as well as shirts with bottoms st front. The hospital gave me a device for breathing exercises. Do you have anything special to suggest t have for the upcoming surgery to make our life’s as easy as possible during recovery
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Margun-I had severe bone pain a few days a week during Taxol. Are you also taking Claritin? I wasn't taking Claritin, because I felt like it was one more thing my liver had to process, and my liver enzymes were elevated. For the last Taxol, I took Claritin, and it helped with the bone pain. I only took it for 3 days. After that, the bone pain went away. I haven't had it in 10 days, and I am 14 days PFC. Good luck today on your last one!!! I read that pillows are really important for after surgery. I am getting a whole body pillow, a wedge pillow, and a small pillow for my seatbelt for the drive after surgery.
Dawn-glad you are feeling better! Do you have any neuropathy? I am still feeling numbness in my fingertips, but my feet feel much better. It seems to come and go. I am eagerly waiting for my eyelashes, eyebrows and hair to grow!
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Dawn, congrats on finishing and so glad the SE's are subsiding quickly. I have #12 next week! Can't wait to be done with that part. My SE's haven't been too bad. Mostly fatigue and some bone pain in my lower arms and legs. Oh and no taste
Margun I have had the bone pain and Tylenol usually helps. I take Phenergan at night and that helps me sleep thru any bone pain. My onc has no problem with me taking it every night
She said whatever works.I have been icing and have had no neuropathy in my feet and just a little bit in the tips of my fingers that goes away a couple of days after treatment. But my fingernails ...... two on each had look terrible. I don't think they will completely fall off but they are pulled up from the skin about halfway down.
My hair is starting to grow on my head but it is white and peach fuzzy. I remember someone saying theirs starting coming in all white at first but gradually darkened somewhat. I was coming in grey before i lost it all but mixed with dark especially on the back. Unfortunately chin hairs are growing too
I have radiation next, 5 weeks daily Monday thru Friday. But hopefully I will not have any trouble with that and my taste should come back! Looking forward to enjoying food again.
Hope everyone has a great weekend!!
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Dogmomrunner. Yes Nat’s SE stopped last night! Praise God. So grateful. Thank you and Margun for the great insight.
Dawn. Thank you for your updates!! It gives us hope! Can’t wait to be where you are.
Hang tough everyone.
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Margun, my hair is growing in white. There's some darker hair coming in around the temples but the majority is white. I don't like the idea of having white hair but I read somewhere that you should wait 6 months after chemo to color. As soon as I can color I will but I need more hair first😜
As for surgery, I met with PS Wed. He said "If you were my mom I would advise putting in expanders and lifting the non cancerous breast". Once I got past the idea that I could possibly be old enough to be his mom (not), I agreed with him. I didn't want to do reconstruction months later but he is the expert so I'll do what he recommends. I always second guess my decisions. He seems to be against radiation unless absolutely necessary. He said it damages tissue so now not sure what's going on with that. BS has said if lympnoids come back clear I may not need radiation but oncologist seems to think I do.
I never experienced any bone pain
SparkleGirl, Congrats on almost being done. My taste returned about 3-4 weeks ago. Hopefully yours will return soon.
notdefined, I still get tingling in my toes but mainly when my feet are up. I'm going to lose the nail on my left big toe. It's dark purple and loose 😩
I was walking the neighborhood yesterday when I realized today would be the first time in 14 weeks I wouldn't have treatment and tears started streaming down my face. I still don't know what I was feeling, whether relief, fear, joy or sadness. I just know since 1/25/2019 when I was diagnosed, I've been numb. It's like living in a haze. I'm hoping it clears one day
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I’m so glad to know I’m not the only one with intestinal cramps! I have IBS which really only manifested in these horrible bouts of spastic colitis lasting 8 or 9 hours. They had pretty much quit happening in the last few years but low and behold after my first round of chemo I had a really nasty attack that week.
I’ve not had any bone pain, luckily, but oh the bloody running nose! Urgh...
It’s so nice to have folks on here that have finished chemo! It gives us all something to look forward to, that this to shall end. Thanks!
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Oh Dawn, that is a perfect description of how I feel. I told people at work I feel like a cicada- a mere shell of what I once was. I hope when it's all said and done that I can get back to me. Just maybe a little stronger, more patient, and cancer free! Hearing from people like you post-chemo gives me great hope for the next step.
Jrom- glad to hear Nat's SEs subsided. I pray she continues overcoming.
For those of you with bone pain- I had pain in my hip bone with Taxol #1. I mentioned it to my NP for visit #2. She told me to take Claritin and Pepcid, like I did with Neulasta. They actually give me a dose of Pepcid with my pre-meds, so I took the Claritin the night of infusion, and then the Claritin/ Pepcid combo for the next 3 days... no bone pain! I'll do the same this time.
Yesterday was Taxol #3 for me. Had a great visit with my MO. Told her I had experienced a little tingling in my fingers and toes. She prescribed gabapentin which I will take nightly now. If the neuropathy doesn't respond, she'll look to changing me up to a different taxane. I'm also getting pretty anemic. She ordered ferrous sulfate tablets that I'll take every morning. She also encouraged me to eat more red meat. :P So my parents took me out to a steak dinner last night. I had to tell her about my potential moving to Germany and asked about impacts to treatment. She seemed fine with the idea, which was a huge relief to me! Now I just have to talk to my SO...
The infusion itself went well. My natracure socks I use on my hands and feet still take getting used to. It takes me a good 15-20 minutes to stop feeling that needling cold pain! The only other thing that happened was when my nurse took the catheter out of my port, it gushed some blood, pouring down my chest and getting on my shirt. I looked like I had murdered someone... a good look when going out to dinner immediately afterwards!
Last night was pretty bad in terms of hot flashes/ night sweats. I had to pull out my frogg togg towel and keep it on my head/neck. That was a lifesaver.Keep slaying, warriors! Thinking of you!
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Dawn- Yay about starting to feel better with less side effects!!
Sparkle- Yay about #12!!! My hair started coming in during Taxol and it is still white, just thicker and a smidge longer lol. Guess I'll rock it as long as i have it, it's the new look right??
Notdefined- happy to hear your bone pain is subsiding!! I thankfully had very minimal with it so it sounds like I'm in the minority in this group. Good for me not for you ladies though!!😕
Jrom- your wife is very lucky to have you as such a strong support for her during this fight!! I am happy to hear her intestinal issues and pain have subsided! I hope they continue to no longer be an issue!!
Palmetto- I hope the meds offer you good relief from the side effects and what chemo is doing to your labs!!
I hope everyone has a good week and thoughts and prayers to all you cancer ass kicking ladies!!🥊🥊
~Katie 💗
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Hi everyone.
I have been celebrating the good news from those of you who are finishing Taxol, helping their children acclimate to college (high fives) and doing well in general.
Positive vibes for those of you that are moving on to surgery, radiation, hormone therapy or any combination thereof. Also to those who are struggling with SE. Positive vibes for everyone!
I had my fifth Taxol and second Carbo today. Threw me for a loop. My sister (that visited my MO with me a while ago) and I understood that I would have Carbo added to every third Taxol. Nope. Taxol and Carbo three consecutive weeks, then a week off, repeat. I'll roll with it. On the bright side, I requested to be weaned off of both oral and IV steroids. They are obliging me! My worst SE are currently from Decadron. I had a sleepless night thanks to that.
I'm going to bed shortly. I will feel much better after a good night's sleep.
Thanks to everyone for sharing your SE. Special thanks to those who stick around and offer encouragement.
I hope everyone has a wonderful weekend.
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Happyanyway praying for you today. Oh well on the carboplatin plan. I agree roll with it!! Our MO said the same about metformin and will also wean us off the steroids as she says they are hard on the gut. With Nat’s GI issues she wants to wean us if possible. She also spoke about an oral chemo if needs be but believes we will be cPR’d with no need for radiation at the end. I love her positivity!! Since there was no node involvement she is very hopeful that after BMX there should be no need for radiation but everything will depend on pathology. So my prayer is for everyone here to be cPR’d at the end. Keep us posted on your SE. Praying for the bare minimums. We do T #2 Monday. One day at a time!
Ipenelope it is always so great to hear from you!! Thank you for your insight and positive reinforcement!!
Happy weekend to all.
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HappyAnyway, I have to share with you my SIL was over last week and I was wigless. She said you have blonde hair coming in! I said no I don't! She said yes you do, look! It was from the self tanner so I do NOT recommend putting it on your scalp😅.
I hope you get a wonderful night's sleep🤗
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Does anyone note feeling more depressed (emotional) on taxol?? I am finished with my 3/12 and have noticed it the last two weeks.. Any explanation from anyone?/
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Mpv459-
I felt pretty sad on taxol. 12 weeks is a long time. I felt like my week consisted of getting ready for treatment and then getting over it. I found weekends the hardest, because my family was around and I didn't want to do anything, none of my normal stuff or much of anything else. I just felt guilty and awful. I started to feel better around # 10, more like myself (even though my white blood cells fell, I felt better. The only thing I can tell you is that the 12 weeks will pass and it will be over.
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One of the SE"s of taxol is depression. It really messes with your emotions
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Hi everyone! Good to see the ladies that have finished the Taxol and are moving toward normal? Maybe normal-ish.
Good to see everyone who is still trudging along on the Taxol. I love knowing you all are here (wish nine of us had to be) because otherwise I would feel so alone in this.
I'd name you all but my chemo brain is typing this
I have only had bone pain with the neupogen. And only after the 3rd shot. I'm taking Claritin around the clock though since last night in anticipation of neupogen after effects. After my 7th Taxol, still have eyebrows and eyelashes. My hair is not growing but is not really falling out either. It's about an inch long.
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ByUmom2--congrats to your daughter! How exciting. By all means I would go to move her in. Maybe not a lot of actual "moving"--leave the carrying stuff and lifting to others. I have twins entering their senior year in HS so we are making college plans. One of them has her heart set on a certain school, but will have out of state tuition so my dh is balking at it. (she will have some scholarships and has a college fund but it is not enough to cover it all).
I love how everyone helps each other with symptoms and questions here. DogMomRunner--how frustrating not knowing if you will make up the missed infusion. I'm sure you really want to know when you will be done!
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Hello again everyone!
First and foremost, congrats to all of you who've finished your Taxol infusions! Let the healing begin! You're all such a source of inspiration to me. 🌟
Quick update on my SEs (and a preemptive apology for some TMI stuff): I am having the heaviest menstrual bleeding and cramping I've ever experienced going on two weeks now. It's getting heavier every day. I go through around six to eight thick maxi pads per day. It's out of control. I'm also having issues with double nosebleeds. Top it all off with bone and joint pain and it's a Taxol Trifecta! MO is palms-up in the bleeding. Says I cannot under any circumstance take meds to stop it (progesterone) since my cancer was PR+. MO is going to monitor my iron levels to make sure I don't become anemic, and I was told to drink lots of water to prevent dehydration - which I already do. The bone and joint pain necessitate a half a pain pill 2-3 days a week. I can live with that as long as the need for more opioids doesn't arise.
Cold capping is going well, as is icing of hands and feet. No hair loss 17 days post first Taxol infusion. No neuropathy in hands/feet. I'm incredibly lucky to have a huge support system for the capping as well as meals and moral support. This experience has reaffirmed my faith in humanity. It’s also let me know who my real friends are.
Hope everyone has an amazing weekend. Our son is down from Oklahoma City visiting and he and my husband plan on smoking lots of meat with our new pellet smoker. Life is good, even amidst this BC nightmare.
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Annie and Laurencii Thank you so much for your reply... I was thinking maybe it was just me... thank you for making it not seem so out there.
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mpv- I cried the entire way to work (30 minutes) over a poor little dead turtle on the side of the road. Normally I would feel sad about that but it seemed a bit extreme even for me. I think all of this stuff (the drugs, the diagnosis, the good and bad responses from strangers and friends) take a toll on us emotionally. You are ok to feel not ok.
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Jrominger, sounds like Nat is in good hands with her MO. That's a blessing. How is she feeling today? Thanks for the prayers. I'm praying for you and Nat, too.
DawnS1962, lol, thanks for the update. I did get a good night's sleep! I feel pretty good.
Mpv459, my MO prescribed Zoloft for me for anxiety shortly after my diagnosis. The first thing that I used to think of when I woke up was BC. There's no shame in getting help. There's a Cancer Support Community in the city that I live in. It's an amazing resource. They provide free therapeutic services for the patient and their families. They offer yoga, general fitness classes and a variety of other activities
Wheatscapes, nothing is TMI on here. I'm sorry that you're having heavy bleeding. Perhaps a gynecologist can help you. Two weeks is a long time. Hugs. Enjoy your visit with your son!
Hi DogMomRunner and loiswb!
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Stopping in to comment re: the steroid pre-med. I know some treatment centers stop using it if you’re not having a reaction but mine did not, and I never asked them to stop it. My body seemed to get used to it over time—didn’t even get super hungry after the first few weeks. Also, I took Zofran for the first two days every week—didn’t need it for nausea but knew it would help me sleep, which it did.
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I never mastered the art of focusing in present moment, but Taxol seems to be a good teacher:).
A dear colleague of mine, whose wife went through a grueling year of treatments for myeloma, advised me to always focus on one day only, on putting one foot in front of the other. He was so right. Once my monkey brain:) goes into forward looking mode, my mood takes a nosedive
.As Laurencl said, 12 weeks is a long stretch, 12 weeks of weekly chemos is even longer. No wonder we struggle!
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mpv459... I do treatments on Tuesday and usually by Thursday afternoon or Friday I am a total,mess. I get extremely depressed and emotional. You are definitely not alone with the feelings. Ugh.
dvhmouse...I am with you on the nose bleeds. They are so frustrating. I feel like I need to blow my nose, but so scared to because it always starts to bleed. Last week it started to bleed with a pretty good flow while washing dishes. I was kinda nervous it wouldn’t stop, but sat down and it finally did.
jrominger...glad Nat is doing better with the SE’s. Love that you keep us updated on her.
loiswb...thanks for the words of encouragement. I am excited to move my girl in but also nervous. I will go over all my precautions to take for flight...compression stocking, etc. I will be 11 days after my last Taxol so hopefully my recheck of blood work before the trip will have good numbers. And best of,luck to your kiddos on their senior year!
DogMomRunner...I have noticed my hair has definitely slowed down on falling. In fact I got my husband to buzz cut down to about an inch a few weeks back. My mom an friends keep saying how each week they see me it is longer. I have noticed it growing as well, especially in the back. Oh and I am with you on the chemo brain typing. I have to reread most stuff I type. Lol!
Wheatscapes...hang in there. My MO says that if I experience any SE that I never had before, to pretty much chalk it up to the chemo. I have had some strange SE’s (varicose veins that ache horribly, bloody nose, hemorrhoids. Etc.)
Happyanyway...best of luck to you with the carbo plan.
DawnS1962 and palmetto.... I am looking forward to that feeling of being a fraction of the person I once was. I feel like i lost who I once was once the hammer of my diagnosis came down. It is amazing how going thru what we are changes us in every way...
To each and everyone of you sweet people, I hope you all have a great weekend and just know how much I appreciate all the amazing insight each of you provide on this journey.
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I dealt with the doom and gloom feeling with Taxol. Especially in the beginning on days 3 and 4. I found that if I kept myself busy on those days, it wasn't as bad. I agree with DogMomRunner that it is okay to feel what you feel, just try not to think about the future. I was plagued with all the "what-ifs" and feeling hopeless that it was never going to end. But it did, and though these effects can be cumulative, I didn't feel like they were overbearing to where I couldn't enjoy at least part of each day.
DogMomRunner-I missed one Taxol, but it was planned. My MO had me make it up if that helps. It doesn't seem that every MO is consistent here, but just wanted you to know that it is possible to make it up.
Hope you all are coping well with SE. I am 16 days PFC, and I am feeling better each day. I have 23 days until my surgery. I really want to get that over with! Neuropathy is still in the very tips of my fingertips, but I can't tell if that is because my nails feel sensitive.
I'm on "Hair Watch 2019", and so far I just see really short fuzzy white hairs. I would really like to no longer see my scalp. Eyebrows and Eyelashes look like they are starting to grow, but it is only a couple of hair follicles.
Hope you all have a great weekend!
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