Weekly Taxol group
Comments
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Great picture Ingerp. Finding long strands of hair everywhere as well as the clumps in the shower were depressing so I grabbed the trimmer as well.
So glad that everyone is doing good!
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*wolf whistle* I love it!! You’re so lucky Ingerp, it really suits you!! I looked like a fuzzy beach ball after I buzzed!
Ahhhhh the family that flips the bird at each other...warms the cockles of my heart, sure we’re not related
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Oh Egads I am sure we share some blood.
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I know these posts are from several years ago but I didn't know where else to jump in. I finished A/C chemo and just had my first Taxol treatment 4 days ago. I woke up with muscle and joint pain. I hope I won't have this every time. I'm worried about the reconstruction surgery at the end of all of this. I have to have a double mas plus left nipple and areola removal. I also have one lymph node involved. The PS wants to do a Lat-flap. Why would I need that instead of just putting in implants? He has explained it to me but I would like to hear from other's who have had it done both ways. I'm worried about how it will affect my back in the long run.
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Hi Callmehoney - this thread is still active! Those of us going through Taxol right now are posting on it regularly so it's a good place to talk about Taxol.
Joint & muscle pain are definitely something that some people experience. I've done 6 out of 12 & I've been doing weekly massages with a registered massage therapist & exercising daily and that has been helping. I also do an epsom salt bath most evenings.
For your reconstruction q though - I think if take that to the reconstruction forum you'll get maximum input. https://community.breastcancer.org/forum/44 -
Thank you! What does 0/5 nodes mean?
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It means they removed 5 nodes and 0 were found positive.
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Callmehoney - try claritin (I take the generic) for the joint pain. I also continued glucosime/chronditin and Calcium with Vitamin D which I also took BC. I'm really big on hydration and trying to get a little exercise. I did a massage every 4 weeks and some try acupuncture. Most people find taxol is a little less brutal than AC. Can't help you with the reconstruction as I just had a lumpectomy but sounds like there is a good place to get info.
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Callmehoney, looks like we're going through Taxol at the same time. I'm going for my second in a couple days and had no trouble with the first. With AC I had joint/muscle pain and took Claritin and that helped. Someone else mentioned that on this thread as well. I found more energy with Taxol but then found myself in the hospital yesterday bc my systolic BP was 53 and I passed out. Maybe that was me but make sure to take it easy still. I was told that my body has had a lot done to it and even though I feel better, that doesn't mean my body knows it. Ps. I didn't do anything strenuous. I went to a park and sat on a bench
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I had my third treatment last thursday, I was switched to abraxane which is still paclitaxol but different formulation and I'm tolerating it so much better! No joint pain anymore and I would say 1/10 of the muscle/bone pain I had with taxol, the difference is unbelievable. Yesterday was my worst day with pain and I definitely still felt achy but mostly in my lower back and it was very manageable, but no comparison (I had chest and back pain, felt like i couldn't breathe with the taxol). I did start taking supplements (B6, B12, Lcarnitene, Lglutamine) as well so maybe its the combination. I just want to put it out there in case someone else feels they are going through the same, the abraxane really helped and I'm so glad my MO advocated for me to get it to the insurance co.
JackyR I totally relate and will repeat to all to make sure to still take it easy.
Yesterday I was very weak and spent all day at home in and out of bed. Today I still felt weak and then tried to run an errand, I was just driving but started feeling really bad and ended up in the ER tachycardic and short of breath. I'm a hospital nurse and not really prone to anxiety or overreacting but I just felt weak and like I couldn't catch my breath and went in. Granted I'm anemic at this point and thought maybe slightly dehydrated, but they did a CT of my chest to rule out pulmonary embolism. So then I definitely experienced major anxiety. Fortunately all was fine and nice to know I have a negative CT of the chest. Moral of the story here I should have stayed home and rested more. The fatigue caused by the taxol tx combined with anemia from AC prior, and the poisoning in general from all the chemo seems to be taking its toll. I guess I need to accept no matter how fit I was before I am not going to gain any energy or semblence of normal while I'm still going through chemo and I just need to rest as much as I can. I'm glad so many are doing well, sending healing vibes to all...
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- Ingerp you look fabulous and exactly as I had imagined you. Love love the hair.
- I see there are newbies here, welcome all.
- Sorry been awol for a while, just been down in the dumps which hasn’t gotten better yet. Started out strong and now well I’ll get over it.
- Tomorrow I have taxol # 8 and then 4 more and done. Then rest and surgery which is what is getting to me. Don’t know what to do with these breasts. Take both off or 1, reconstruction which kind. Too many decisions
- Last taxol finally gave me permanent numbing and tingling on left side of my body, fingers and toes. Left toe hurts, did since 1st taxol but got worse. Feet are peeling. Fingernails some are black and blue but no sign of lifting.
- Anyone do implant and then rads ? It’s the easier so I want that. Don’t wanna go back into a major surgery. I know the skin issues with rads and implants. But I figure I’ll get the dark or deformed part tattooed. Never in my love did I ever think I would get a tat, but looking forward to getting a few now. Rebel I now am.
- Be well all and pray for hair.
- Mine started growing. It’s gray peach fuzz. Idk they say to shave it so it grows stronger and natural color. But I just can’t buzz it no way
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Idkidk good to hear from you. Sorry about the blues. I’m feeling a little less than cheery this week too. Finally coming to grips with the fact that I’m getting tired, don’t have a lot of oomph, and that it may get worse over the next 7.5 weeks. I hope you’re planning something fun after #12. Not sure what got into me but I bought tickets for Hamilton for about two weeks after <what better be> my last T. Kind of a splurge, but I bought the CDs and have so enjoyed getting to know the music. Here’s to renewed energy as you get to the end of this part of your journey.
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Sorry to hear so many are having the blues. I gotta say I'm on that boat and started anti-depressants because it's just all too much for me. We gotta find hope somewhere. I go for my second taxol tomorrow so we'll see how it goes. I've definitely been very very tired lately and been napping a lot. I've also had difficulty catching my breath.
mLghtn, we are definitely experiencing some of the same things. I hope you have help with errands and stuff. My family doesn't want me driving since my fainting spell.
Okay, so let me end with this positive: I'm so glad to be a part of this group. You are all warriors
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- Hi jackyR welcome to the taxol group. I pray you have an easy time with taxol. I don’t recall anyone else mentioning the catching breathe issue. I have had that also, started with A/C and continues with taxol..
- Ingerp good for for getting the tickets and I bet you will have a blast. It’s good you’re planning ahead of completing taxol and planning to enjoy life. That’s a good think. The blues I suppose is inevitable for all of us. You’re almost done so you keep the faith you sweet warrior.
- I just got back from my # 8 taxol and it was a unique infusion day because unlike me I went into a rage with my onc, her PA and the nurse. Nurse asked me about my symptoms while starting the IV and then when I told her she stopped and said she had to let the onc know. Well I lost it and said I would not skip the infusion and refused to see the onc. Well I had to so I went one floor down to see the onc and her PA who insisted on seeing my toes and gait. I did fall on my steps because I couldn’t feel my toes. And the neuropathy is here to stay after #7. Usually it would come and go and sometimes not come back.
- She found my large toe to be infected and would only allow me to get taxol today if I agreed to see the neurologist next week. I agreed but oh please like what’s he gonna do ? I broke down emotionally and cried like a baby. Finally I cried. That got me to agree to see the therapist omg. I don’t wanna talk about this diagnosis and how it changed my life forever. I much rather vent here with my sisters who get me. Onc told me she’s going for a cure. Yeah sure I told her and what about when it comes back and worse ? She’s correct I saying I keep all in and then rage. I’m full of anger and fear. I made life decisions based on this anger and fear which in turn is where my rage comes in. As I mentioned before I broke off my relationship, gonna drop my career and retire early. I figure what if it does come back ? Why should I continue to work. But I worked so hard for all I have and basically this darn cancer ruined my life. I miss the old me. I’m just a bitter b**t*h right now and I wanna be left alone by those who just don’t get it. I hate hearing I’m amazing, strong and that I don’t look SICK at all. I mean really when you ask me how I’m doing does anyone really wanna hear the freakin truth ?
- YOu ladies here are my salvation and the only ones who understand. Sick ? I don’t look sick ? Are we sick ? Will we always be considered sick ? Yes we will always be considered sick and a ticking bomb.
- Sorry don’t mean to bring anyone down, but I just don’t know who I am anymore. I feel like planning for the future or continuing to fix my new home makes no sense anymore. A relationship who needs it really cause I’ve lost my zest for life and although I’m told that it don’t matter that I have no hair or eyebrows and will soon lose my breast it don’t matter. Bull cause I see it in your eyes and feel it in your touch.
- Thanks for listening. Hugs to all of you
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Idkidk,
I'm so sorry for the hard time you're having. It would be wrong to patronize and tell you it's all okay. The reality is, it's not. Right now, in the thick of treatment, life sucks! Not only do you physically feel awful, but the mental torture can be unbearable. Life as we know it changed in an instant. We were carefree...ignorant to what was to come...maybe even blissful. All that has been replaced with anger, fear, worry and worst of all, isolation. Nobody could possibly fathom what you're going through. When you're inundated with all these negatives, it truly seems like giving up or giving in would be easier.
Then you finish that last treatment. It's supposed to be a glorious occasion, but you feel kind of lost and numb...like going through the aftermath of a natural disaster. After all of the appts, testing and weekly trips to infusion, here you are in a holding pattern. But as you're laying on the couch trying to sleep off the last of your SE's it hits you: HOLY SHIT, I DID IT!!! And a weird sense of pride comes over you. YOU did something everyone universally sees as the Holy Grail of strength and courage! YOU survived all of the needles, upset stomachs, painful muscles, joints and extremities etc...
Then a really funny thing happens. You wake up one morning and OMG, is that hair on your head? It's kinda fuzzy, and probably white or gray, but by golly it's hair! Then you notice your joints haven't hurt in a couple of days (how did I not notice til now???). And all of a sudden you feel something you haven't felt in many months...HOPE!!! At this point, you start thinking about how soon you can color your hair, or will it fill in enough so you don't have to cover your head for the family reunion, wedding or whatever event is coming up. Geez, it's been a while since I've enjoyed my food. Can't wait to treat myself to that steak, ice cream sundae etc... Next thing you know, all those worries about the future are the same kinds of things you were worrying about before cancer. Will I fit in that dress? Will the check clear? Traffic is crazy today!
Don't get me wrong, life will never be exactly the same, and concern about recurrence will probably stay with us for a while. But as time goes on, you really do start living life pretty close to normal, as cancer takes a backseat to the everyday drama that took front and center before diagnosis.
Please don't think I'm over simplifying what you or anyone is going through. I've been there. I just want to let you know that it really does get better.
Peace, Love and Healing,
Vickki
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idkidk—you are in a full-blown depression. Please talk to someone and consider an antidepressant. You don’t have to feel this way. You really don’t.
Vslush that was a beautiful post. Coincidentally, this popped up in my Timehop app today. It was the day of my last rads two years ago. We *do* get out the other side and life can get back to normal if you let it. Hugs to you both.
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I am three weeks out from my last taxol (of 12) and feeling really good! I have a lot more energy, can work full days don't get winded walking up hills, and have started getting back in aerobic shape on the treadmill. The bloody, runny nose went away too.
I do have a new symptom - tinnitus. I have always had it, but barely noticeable. Now it is loud. I am not sure if it is from the chemo or from the Effexor I recently started for hot flashes. Anyone else have this? And my molars are sensitive to cold and most everything. This started before Effexor, during Taxol
I am really impatient about my hair coming back. When will it happen? So far nothing new, just a lot of wishful thinking. And my eyelashes and eyebrows are very thin. I think I have literally 4 lashes on each eye. I look weird! They better come back!
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My blood levels are slipping a bit but still high enough for full dose of chemo & I'm going for Taxol 7 this afternoon.
My hair has definitely started growing back but no sign of eyebrows or eyelashes.
idkidk - I agree with Ingerp. It's a good thing you've agreed to seeing a therapist. You think nothing will help and it's hopeless and you'll always feel this way - this isn't reality, this is depression speaking and depression is a big fat liar! See the therapist as soon as you can. Do not cancel that appointment!
Vslush - thx for reminding us there's life after cancer treatment with that wonderful post. -
So sorry to read some are struggling. And proud of you for getting help. Learning to seek help us definitely a big part of this process for me.
During today's treatment (#4of12), my oncologist decided to switch me to Abrazane next week because without a dose of hydrocortisone, the taxol makes my BP spike and induces what feels like a panic attack. She doesn't want me on megadoses of steroids for 2 more months.
So - anyone else made this switch? Did you have the same side effects, or did you feel completely different?
Hang in there everyone - it's almost Friday
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Idkidk--sorry for what you are going through right now. I definitely understand. I had a weekend after I finished my AC treatments where no one could get me out of the house or stop me from crying! I felt every emotion you stated. I hated that people at work didn't really know what I was going through--I could put on a good front and look "strong" while still feeling absolutely miserable. I didn't want anyone to tell me that I looked great because I knew the reality and I knew that NO ONE could understand the pain and emotional turmoil. I pretty much had to tell my mom to stop texting me inspiring things! ha. I missed my old life. Somehow though, I snapped out of it. I think I realized that the old me may be gone right now, but the new me that I get to turn into after cancer is going to be pretty spectacular. I have no idea what life after treatment looks like and I'm so thankful for Vslush for giving us some hope. But, one thing I do know is that we get to make a choice everyday. We can choose to let cancer rule our lives (which is ok sometimes!) or we can choose to keep on surviving and loving everyone around us! I'm proud of you for making an appointment with the therapist. I plan to do the same. Hang in there and let us all know how we can help.
I don't think I have posted on this group yet, but I have kept up with you all recently. I was diagnosed at 31 with stage 2a (triple positive) in January. I had a UMX at the end of January, got married, completed AC in April, and started Taxol (H&P) in May! #7 tomorrow.
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lg10--I am two weeks behind you. I have #5 tomorrow. Looking forward to having #6 behind me--I feel like knowing I've crested the hill will help with the last six weeks.
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Ingerp,
Is that a tiara? Love it!!! I vote every lady should get one upon completion of treatment 😉. You look lovely and happy!
StubbornDog,
I had a little tinnitus before treatment, but it's significantly more annoying now. I've read that can be a side effect. Don't know if it's permanent or not.
Thanks to all for the kind words. I'm happy to help any way I can. Stay strong, stay positive and kick Cancer's ass!
Vickki
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I have several—doesn’t everyone? ;-)
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Thank you, Vicki - I am about 6 months behind you. The tinnitus is not so awful that it keeps me awake but it’s always there and before II never really noticed it. Its definitely gone up in volume.
I get my port removed today! Yay
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good luck today, ingerp. we are almost there! it's been a looooong 3 months! The AC took my hair, but I have peach fuzz already. Does anyone know the progression from here? How long it takes for the real hair to start to grow after the fuzz shows up? I've also been using a product called vegalash on my brows and lashes and I can already see some regrowth there too!
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also-- I am wrong. I have #6 today. Chemo brain is really starting to get me!!
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Same to you, lg! No experience with regrowth but I have read quite a bit about the timeline. I feel like many women were ready for a haircut maybe 3-4 months after stopping the T. I'm sure it's pretty individual. I think my hair is (used to be) pretty quick-growing, plus I've been taking Biotin and will continue that for the foreseeable future.
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For Ingerp and all...
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Thanks as always, Egads!! I'm all ready to head out for #5--looking forward to next week so I can begin the downhill slide.
I have a hair question. For those out the other side, were you an absolute cue ball? My hair loss has definitely decreased the last two days, but maybe it'll crank back up after today's tx? I'm just wondering if there's any possibility of keeping *some* of my hair. I think my leg hair has gone (yay!), but I still have lady part hair and eyebrows/eyelashes.
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