Chemo starting December 2017
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GenevaC- i've been getting hot flashes since AC4. It started off with just a little getting hot under the scarf. So now I mostly just wear the cap because I get them about 10 to 12 times a day and I get so sweaty! Then a few minutes later I'm very cold... and put on a sweater and then about an hour later I'm burning up. So crazy; But I'll take this over nausea any day!
I've been getting constipated and pain with stools- I wonder if this is the Taxol? Did anyone else get this SE? I think I'll start taking colase.
I started to get a rash on my cheeks - it sort of looks like acne. Also I'm a lot thirstier and my fingertips are all dried out.
Daniz- I'll bet the headaches are from Taxol. I'm not taking steroids except with premeds. I got lay-in-bed-all-day headaches with Taxol #1 on days 3 and 4.
I haven't done anything about fingernails... just hoping I'll be lucky and not have to deal with it.
My energy is finally back. Unfortunately i've been getting sharp shooting pains in my surgical arm. I was discharged from PT last Wednesday and now I'm getting pains. I'm terrified of getting lymphedema since I had nine lymph glands removed and I am at risk.
I have Taxol this Thursday and I feel much stronger about it ... notnearly as anxious.
Hi Hariry! Nice to be back! I like the way the wig looks for me but it makes me sweaty and itchy if I have it on too long. I’ve even pulled it off my head in a restaurant twice...I was so hot.... I’ve just gotten to the point where I don’t care anymore what I look like; I just want to be comfortable.
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Laura - I agree that having no hair is convenient for managing hot flashes!
Nails - I spoke with the cancer esthetician last week during my infusion and she was very clear. So first I have to apologize for spreading misinformation previously on this forum (sorry everyone). Raphaëlle says the mechanism for nail loss is unknown (but does not involve UV). Selenium is part of healthy nails for everyone, so making sure your diet is rich in it might help (Brazil nuts, sardines, google it). Laroche Posay also makes an expensive nail polish with selenium called Silicium. She also suggested that nail polish might act like a barrier to keep your natural moisture in your nails.
Sore throat and tired from being woken by hot flashes, b ut off to chemo today.
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Sorry to ask this again. Someone posted a link where to check all your products for the chemicals in lotions shampoos etc. I think someone posted a link before (but I just can't find it now anywhere) so if you wouldn't mind sharing again please I would greatly appreciate it.
Good to know I'm definitly ordering some clear nail polish or nail hardener today. I don't see any difference yet I've only had one infusion but I have seen too many women's nails get so bad. My cuticles have gotten different not going to lie. Good to know about the selenium in Brazil nuts.
The hot flashes suck. I thought they would go away after taxol.
Laura, I had a red rash on my cheeks Saturday and I used Benadryl cream it got rid of it right away.
Y'all are brave I still can't leave the house bald. I hate my bald head so much. I live in Texas so it's not really that cold sometimes I can't wear a hat and I hate it. I wish i lived up north where it was cold so I could just wear a thick hat and not worry about the damn wig.
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Sometimes I feel like I wear my hats for other people.
My bald head doesn't really bother me. Wearing the beanies and hats certainly doesn't bother me, but I'm hopeful that I can have some hair in time for the warmer weather. Right now, they feel good and cozy.0 -
Hello Daniz and everyone:
That was me with the personal products database. It's from The Environmental Working Group and the database is called Skin Deep. The link is:
I can't recommend it enough. There are almost 74,000 personal products included so it can be overwhelming. But the group is reputable and uses good science. This site also has lots of good information about eating less toxic foods, produce and water.
And just to follow up on the selenium for nails. The Livestrong site is clear that no more than 1 oz of Brazil Nuts per day is recommended because it is possible to take in toxic levels of selenium. And since nuts tend to be high fat, that also recommends against consuming too many Brazil nuts. I find that most nutritional remedies I try take 1-2 weeks before you can see a difference. But my nails always stop splitting when I remember to add Brazil nuts to my diet.
After Cycle #2/6, my PA recommended the alpha lipoic acid and acetyl-l-carnitine supplements to combat neuropathy and my MO dropped the taxotere concentration by 10%. I can say that I feel a lessening of the neuropathy but I can't be sure what to attribute it to. I've also iced my hands and feet during my taxotere infusion so I hope that this is all helping to prevent the neuropathy from becoming permanent. Just putting that out there.
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Nails are basically skin appandages. To protect them you may apply moisurizers covering all fingers toes and their nails, three times a day at least. This won't prevent the darkening, as darkening is due to hypoxia at tissue in the dermis, underneath the nails. But moisturizing them can help prevent cracking/peeling and falling off.
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Thank God and thanks everyone, I survived taxol. Yes yes yes it's not bad. Felt nauseous (psychological) and dizzy during infusion. But fully recovered after few hours. Yay😇
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Geneva – I have a sore throat too and I wondered if it was a side effect or if I’m getting sick. My singing voice has about an octave lower ( I conduct an eighth grade girls choir - so it’s a little hard to demonstrate 😂 ) from mouth and throat sores. Also, my hot flashes are now starting to interfere with my sleep too and so I get tired in the mornings. I’ll get up for about an hour and then I have to go back to bed and sleep for another hour.
Daniz- i’m going to try the Benadryl cream today.
Mjb- I often feel like I’m wearing scarves and caps for other people’s sake. Usually if I’m with someone (students mostly) and I’m getting a hot flash, I’ll ask them if they don’t mind I’m going to take my hat off - and they are always gracious about it. On the other hand, I really love wearing pretty scarves and matching them with my outfits.
Dives - I want to start eating Brazil nuts. I looked at the Whole Foods yesterday andthey didn’t have any. Where do you buy yours?
Hariry- so so glad your Taxol went OK. I have Taxol#2 tomorrow. Even though #1 went OK, I still get butterflies in my stomach. Also I like that idea of trying out a new restaurant as a reward for each treatment.
It’s snowing where I live – so so pretty. All the schools are closed and the governor of Pennsylvania has called a state of emergency. My kids are already out side playing in it.
Hugs to everyone and continuing prayers!
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Hi ladies! I am new to posting on this topic. I finished chemo in Oct 2016. As of today, I have very little hair. It looks like Jack Nickolsons hairline. Patience is not one of my virtues, so I was wondering if anyone had a similar problem. 2 years ago I had waist length blond hair and I miss it. Anyone?
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Hi Dawnann,
I’m sorry to hear you’re still struggling with hair that sounds really awful. But, most of us in this group have no hair. 😞 we just started chemo in December so our journey just began. I do miss my hair soooooo much.
Congratulations on being 2 years NED. That’s amazing I hope your hair starts growing.best of luck to you. 🙏
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Daniz, I had a custom made wig made that I still wear when I want to feel like me. Kudos to all you ladies who could go commando. I would rather have been seen without my pants that without my hair!! Love to you all. Stay strong.
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Hi Gals just got back from church youu are all in my prayers. Hope everyone have a good week with mimimum SEs to contend with.
Yesterday was Taxol treatment#4 so far so good seem to be tolerating well just got a cold but that didn't prevent treatment as the bloodwork was fine.
Danzi-Great news with the reduction in size of the tumor.👍 I have been getting some mean headaches taking Panadol Ultra I am pretty sure its the Taxol. I try to just keep still too much movement makes me feel likevmy head is going to burst.
Diveslikeagirl - Hope you are doing well only 2 more or is it 1 AC to go you are almost finished sending some positive vibes and a warm caribbean hug to you.
Laminders - Hope that pneumonia resolved itself and you are feeling plenty better, sending some positive vibes and a warm caribbean hug to you.
Hariry-I know the feeljng with the wig...I wear mines to work and by evening I just want to drag it off and throw it in the bush. Those meds have my head extra hot I think. I have always worn wigs and this is the 1st time I wanna throw it away. I usually rock my bald head without the beanie. Lol😁
GenevaC-I have been getting some hot flashes 😠 too not sure what to do about it though.
Stay strong, rest, eat as healthy possible and lets kick this ca cer to the curb.
Dark13
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Had to take a break from the board for awhile. Neutrophils were low again which delayed chemo 4 (taxotere 1) by a week. These delays get me down because I feel like I'm not making progress. Finally had it two days ago and had my first neulasta shot yesterday, which is normally prescribed at the cancer center automatically with the taxotere. Took claritin as a precaution, and have been taking extra strength tylenol here and there because of mild bone aches. The doc had said don't hesitate if you feel anything so I've been following her advice. Feeling run down, hoping to make it through my kid's music concert this afternoon and going out for dinner afterwards. Tomorrow I'm going to try to make it into the office, atleast for awhile. Hard to know what's around the corner with the SE's from day to day. especially with a new drug. There's been lots of warnings from the doc and nurses at the cancer center that taxotere has worse SE's than FEC so I'm feeling a little apprehensive.
As for the wigs, I don't know how I could've functioned without them during these last couple of months. I always wear one when I'm out except to the cancer center (where I often wear a beanie) if I don't plan on going anywhere else. After chemo 1, dh had buzzed my hair short. I still have sparse hairs that haven't fallen out that have been growing a little and I haven't bothered buzzing them.
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Good to hear from you sswp( Was thinking about you the other day) so are you going to have three doxetaxel? Three weeks apart?
I had my#1 taxol last week and #2 tomorrow. So far SE which really bothers me was the hot flushing. The heat was felt especially in the oral cavity and worst at night, that disturbed my sleep. Fingers crossed that the accumulative effect later on wouldn't be too bad.
Wishing everyone SE free sessions.
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Hey everyone! Had Taxol + Herceptin #2 on Friday. This time I am a little more fatigued and achy, but not slowing me down too much. Constant mild nausea, but not to where I feel like I will be sick, it's just a nagging feeling. Other than that, the newest SE is that I've lost all the hair in my nose and had my first bloody nose today. Good times! Ha ha! Hope you all have a good, uneventful week.
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Hey Ladies. Does anyone on Taxol have increased liver enzymes??? Does anyone know anything about this?
They told me I have elevated liver enzymes and for now they are watching it but said they will need to do additional tests next time if they are continuing to be elevated.
Is anyone taking steroids night before treatment and morning of or just getting it through iv? I’m taking 5 pills night before and 5 pills morning of and I can’t stand these dang steroids. Don’t get me wrong it’s nothing like AC. I still am so thankful to be done with that.
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Hi Daniz! My liver enzymes had been elevated, too. My MO believes it is from the chemo...they were high before Taxol + Herceptin started, and it tested high 4 times in a row. I just had my second Taxol + Herceptin on Friday, and the enzymes have been in normal range the last 2 weeks. I only get the Decadron (steroid) in my premed during Taxol + Herceptin infusion. I don't have to take the pills anymore. Thank goodness! With AC I had to take them on day 2 & 3. During infusions now, I think the benedryl helps balance out the steroid! Ha ha. I haven't had trouble sleeping like I did with AC. All that being said, I seem to have a constant feeling of mild nausea. I should try some of my anti-nausea meds, but it's been manageable without. So crazy since I was only sick from nausea once during AC...
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I have peace fuzz on my head! And I am NOT the only one who can see and feel it. It’s only a little fuzz but it is all over, seems to be a very light color. I’m pretty happy about it. Last AC treatment was in January, and I did read that it might start coming back through taxol.
Bad news is I failed my blood test today. I’ll still have herceptin tomorrow (so I don’t even get a week off from going into the hospital] and they will test me again but probably will be delayed by a week. I am really hoping that the iron infusion tomorrow gives me a boost.
Mjb - I hear you about the nose hairs. Totally innocent and especially with nosebleeds.
All - it’s nice to hear your news. And it feels good to have a outlet of understanding womenfor my news. Thank you and hope the SE are ok this week.
Geneva
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Yay for hair, Geneva! It's kind of funny...I never lost all my hair. I clipperred it really short as soon as it started to fall out during AC. Then, within days, tons of little hairs fell out more, but I was never completely smooth. Now, after 2 Taxols, my eyebrows are half gone, nose hair gone, and remaining hair on my head is coming out really easily. Maybe I will be able to get that henna tattoo on a smooth head as I had wanted to. Ha ha.
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Mjb, it’s crazy how everywhere it’s dofferent and all doctors do it differently. On AC I didn’t have to do any steroids (pill form) they gave it through the port but with taxol it’s 5 pills night before and 5 pills morning of. It’s crazy how’s much my liver enzymes went up they skyrocketed since the last time. I don’t get it.
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Daniz, do not worry about the liver enzymes. As they will monitor and adjust the dosage of chemo accordingly. And you may talk to your MO I'm getting the iv dexa 30min before taxol infusion. Can't imagine how to sleep tight with dexa that much
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Hi Hariry, Yes I'm having 3 docetaxel, 3 weeks apart.
Bone aches from the neulasta shot have been pretty bad. I've been taking extra strength tylenol and claritin but it doesn't seem to do much. Feeling exhausted, but functioning at work somewhat. I've been pretty busy in my work and personal life otherwise I would be dwelling on how crappy I'm feeling right now.
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This round was really rough on me. All I could manage to do the past four days was lie in bed because I didn't have the strength to even sit up. It was just awful. I only have one more full TCHP treatment left but really dreading it because this one really fatigued me harder and was so rough emotionally and feel like the next will only be worse. My surgical consult is next week and so many things are up in the air right now. I feel like my oncologist didn't listen to me when I tried to talk to him about what my infusions will be after surgery and just don't particularly trust him anymore but I don't know why to do about it.
Even the actual chemo day this round was horrible. The nurse bugged me to talk to a social worker the whole time because she thought she was helping but it left me stressed out and on the verge of tears. Eventually the nurse sent the social worker despite me and because my life is some sort of cruel joke, the social worker doesn't actually have any ideas for how I can find support. Her best idea was I try a support group for 18-35 but then she never even sent me the information like she said she would. I didn't really want to be the oldest person at a group anyways. Does anyone have anything that they've found that's helped them?
I was excited to join the Young Survivor Coalition's private facebook group but they make you friend a profile that's covered in pictures about their organization and literally says on it that it's for the secret survivor's group so if I friend it, basically anyone who looks could figure it out. Is it right to be super angry about that? Shouldn't a health organization maybe make it discreet? I'm even more hurt that I've messaged them twice about concerns and no one's bothered to respond to me. I thought they'd be one of the more useful resources for me but I feel betrayed.
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I'm sorry about what you've been through, JVP. Must be tough, the combination of TCHP. one at a time. Would be a waste if to give up now.
The social media group... arghh, not sensible at all. Don't waste your time with it. Not worth to get emotional. Stay focused on getting well.
Gentle hugs, Hariry
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Hi Hariry, thanks. I'm not giving up or anything, I'm just getting really worn down emotionally and trying to figure out how to turn it around. I felt like for awhile things were getting easier to handle but now I feel like I'm right back at diagnoses again. I'm doing this all alone so still trying to find support outside of like..this thread. The only local support group I've found has been running their monthly meetings when I can't make it because of chemo.
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Hello JVP!
I am so sorry this round was so rough for you and made you feel like that. This
Process is so hard it's like dealing with it over and over again. I have my great days and then I have the really bad ones.
If I remember correctly you are my age, I'm also 34 and I'm also on the Facebook page young survival coalition and they didn't make any collage of photos or anything of me when I joined about two months ago. But I'm also part of another fab page for young women with breast cancer and I must say I love it. I love all three groups I'm in thy are very private but the women on there are amazing. I have met so many wonderful women on there who are so supportive I've become friends with many of them. We exchanged numbers and everything and I just think that has helped me tremendously. To talk to people privately about what we're going through is a huge help to me. The third group I'm on is a somewhat localized group from my area and that helps also.
I have thought about seeing a therapist but from what I hear from other survivors this will really help once the treatment and surgery are over and then you are at that waiting stage and going for check ups. I hear girls have a rough time with that also. I do think talking to someone will definitely help. If you think the support group 18-35 might be somewhat of assistance it may not be a bad idea to talk to other girls going through this. I don't know I personally would try it don't look at it as you are the oldest there we are all in this together and want to support one another. It's so important to talk about it, I have noticed a difference in myself when talking about it.
About your doctor, is there a way to get another opinion from another oncologist in your area?
If I can be of help and if you want me to add you to this other young women with breast cancer group I will be more than happy to do that. It's helped me a ton just like this page here has no feel like I know all you girls hahah 😂😂😂 and I wish we were closer it would be amazing.
Best of luck to you girl!! ❤️
Hope everyone else is having a great Friday morning. I’m off today for Taxol #3 wohoooo. I hope and pray it goes as well as the others two have. Hairy how has yours been? I know you were worried too like I was lol. That ac played mind trick with all of us lol.
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Taxol #3 is in the books! I dozed off during infusion. The Benadryl makes me sleepy. Grateful that it balances out the steroid, though! I was tired going in, too. Really dragging keester the last few days. When I got home, I ate lunch and slept for 2 more hours! I don’t feel like doing anything, so I’m not going to. Ha ha. My hemoglobin has dropped again. I’ve had a steady decline. It’s at 9 now. Keeping an eye on it. Had my blood transfusion at 7.3. Not too worried about another because it made me feel so much better. New SEs from last week...Already mentioned loss of nose hair...now eyelashes and eyebrows are mostly gone. You don’t realize how functional they are until you lose them! Oh, acne, too! Yuck. At least one very red and painful spot on my face at all times. Haven’t had any breakouts for years, so it’s a huge bummer. Still in good spirits! Chin up, everyone
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Happy Friday everyone! Is anybody else experiencing neuropathy? It’s getting worse and worse. My fingers and toes are so numb. It’s hard typing text messages because my fingers keep hitting the wrong letters. I can’t feel very much of what I’m doing with my fingertips. It feels like there’s Novocain all over my fingers and toes. It’s especially disturbing because I’m a pianist. Today I was called at the last minute sub for a funeral at my church. I haven’t played in public since December before chemotherapy, I said yes because I knew they were desperate and my energy has been pretty good; Taxol #2 was last Thursday. I made so many mistakes that I never would’ve made in the past. The priest and the family were grateful, but I feel terrible about it and depresses me. I’ve been tearing up a lot today. Playing and performing the piano is a very big part of my life. It seems as if the numbness has gotten especially bad in the last couple of days. I hope it doesn’t get much worse.
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I'm so glad to hear that taxol alone seems to be more tolerable than AC was.
mjb, saying the transfusion made you feel better kind of makes me want one! haha. My hemoglobin was 9 in the beginning of january and has been 8.3 ever since then.
Laura, I've been dealing with neuropathy as well. I've the same sort as you were they just feel numb and it makes doing things with my hands difficult. Mine seems to reach peak intensity around 5 days after infusion. For my 3rd & 4th infusion, I just had it very slightly. My doctor lowered my dose because of it but came on full blown this time around. I'm trying to remain hopeful that it won't become permanent. I do have permanent nerve damage in my lower lip on the right side from oral surgery and I can say that at first, I couldn't use my lip at all because I couldn't feel it. I even had trouble eating etc but eventually I got used it and it still feels weird but my lip functions as though I can feel it again (even though I can't).
Thanks Daniz, this one was especially bad but I feel like I'm pulling myself back together some now. YSC finally got back to me and gave me another person I can friend to get into the group. My issue was you had to friend a fake profile to be invited to the group and the fake profile says what it's for on it so if anyone was curious about the new friend you added and looked at their profile, they'd be able to figure out what it was for. I know it might be a little extra paranoid but I'm still not ready to have everyone know.
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Hello Ladies! I'm in the January 2018 Chemo group, but have been searching for info about Taxol and came across your group. I finished my dose-dense AC on February 28th and will start 12 weekly Taxols next Wednesday. I'm super nervous about it and was hoping to get some info from those of you that have gone through it already or are going through it now.
How does it differ from AC - as far as side effects? My biggest complaint with AC was feeling like my entire digestive system shut down - then also the usual side effects of nausea, tired, just plain not feeling well.
Do you ice your hands and feet, and if so, what method do you use? Homemade ice packs - or something purchased?
What can you tell me about the neuropathy? How common is it and how bad does it get?
I so appreciate any insight you ladies can give me - I'm really nervous about switching to this new drug - and the premeds as well! I hate not knowing what to expect.
Thanks so much for any advice!
Debbie
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