Chemo June 2010
Comments
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julia- Best to get it checked out, even if it is nothing. Then you won't be fretting that it IS something! About those spider veins, my legs are starting to look like road maps. I'm convinced it's chemo related. I blame everything on chemo.
Here's another thing I am noticing. I seem to have a LOT of peach fuzz on my cheeks and chin...it seems to be growing longer! What the Heck! Thankfully it is blonde and soft. I'm wondering if it might be due to chemopause, hormonal shifts increasing facial hair? I'm thinking about waxing, though I have never done that. Or would waxing not be wise during chemo?
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I got my MRI results and the tumor has shrunk from 5.9 cm to 4.3 cm!!! And the lymph nodes are almost normal size, the largest is still 1.3 cm. The report says the tumor is centally necrotic. I'm not sure what that means??? I know it means dead cells, but is it considered a good response to chemo?
I am finished with AC, now onto Taxotere... I am nervous that it will have worse SEs. The possible nail loss and permanent baldness freak me out!! I still have my eyelashes and eyebrows, and I hope I don't lose them!
Take Care Ladies,
Nannababy -
OK, I'm confused. I got a call this morning from Sloan confirming my onc and treatment appt tomorrow. I asked the girl who called about the ice packs on hands and feet during Taxol. She wasn't sure but sent a message to my onc. He just called me. He says I should not do that. There are no proven studies that it works and he doesn't want me cutting off areas to my body where the chemo won't be able to get to. I feel like he dismisses anything that is not technically medically proven. Now I don't know what to do. I sucked on ice during the last 3 AC treatments to stop the burned tongue feeling and it worked. Should I be worried that I may have stopped the chemo from getting to my taste bud cells? The onc. nurses didn't tell me not to do it! UGH!! I really wanted to try everything to prevent side effects!! -Donna
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workmother- I can see how you might be confused. I have found that Oncs will not acknowledge that something might be beneficial unless there has been a documented study with proof. I went through this with my Onc (who I like a lot). When I elected to do CMF instead of TC for chemo (after considerable research), she said "you know there is no proof that CMF has effect on your cancer". That threw me for a loop until I asked her "Is there proof that TC has effect?" She immediately replied "No, there have been no studies on it either". From these threads, I think many, if not most chemo centers use ice packs on hands and feet. Is your Onc worried about fingernail mets? Jeez! What is the statistical likelihood of that? As latte pointed out, the drug company who makes Taxol provides cooling gel gloves to chemo centers. Doesn't that speak volumes? Perhaps call the Taxotere/Taxol company and discuss the nail side effects and what they recommend. Then discuss your findings with your Onc. I am constantly struck how one-dimensional doctors are these days, focusing only on surgery, drugs, chemo, radiation. As so many of us know, the quality of life, alleviating or preventing side effects are equally important. I say go with your gut. I also trust chemo nurses opinions a lot. They are in the trenches day-to-day and know cancer patients. Good luck!
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Hi ladies
I started docetaxel (taxotere) on Aug. 6. Not sure if that's the same as Taxol. The onc nurse gave me gel mitts. She said they're not sure if they work, but why not give it a try...
My nails are very ridged and brittle, and I still got tingling/burning finger tips after infusion, along with terrible bone/muscle pain. I don't know if the gel mitts made a difference.
I am feeling a bit blue. My daughter's friend's mother died on the weekend of cancer. Not breast cancer, but still... and I found out that my second cousin passed away last week of breast cancer. The whole family's been trying to keep the news from me. I am the same age as both of these women. It takes my breath away.
Courage, ladies.
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NannaBaby,
I have done 3 rounds of TC, my nails are all attached and look great. I put clear polish on them and cold packs during infusion of T. I just lay the packs across my toes and hold in place with a blanket, on my hands I sort of make a fist and cold the cold pack so it's really just my nails against the cold pack. I take breaks when I can't stand the cold anymore, you don't have to do it 100% of the time is my experience. I chew ice too, which gets really boring. Last time I chewed less ice and had more mouth issues than I have before. I still have my eyebrows, nasal hair is getting pretty sparse, my nose is running like a faucet and getting chapped from constant wiping!
DesignerMom, seeing nurse at surgeon's office tomorrow about my red spot, she said it could be a suture, even though it's 16 weeks post surgery!
Julia
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about the frozen gloves - they are made and provided by Sanofi Aventis (the Taxotere company). If you google "Taxotere gel gloves" you'll find a French study and a Japanese study. One of them was partially funded by Sanofi so may be biased? but I still think it's worth trying them.
on another note - just want to make sure that everyone knows about the benefit of eating brocolli sprouts. if you only eat one vege (which of course you shouldn't...) then it should be brocolli sprouts in terms of the effort it makes in cancer prevention and healing. google it.
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latte- You are such a wealth of information. Thank you! I'm off to google brocolli sprouts. As we are talking about preventive eating in order to optimize our health, I came across several interesting articles. The BC link to dairy, especially modern, estrogen-high dairy is becoming more documented. Who knew they kept cows pregnant year-round in order to produce more milk? I can't imagine not eating yogurt and cheese, but I'm going to try to limit it. The high fructose article makes total sense. Why do they have to mess around with food so much?
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Oh DesignerMom, I am running out of things to eat :-) That Joe Jackson song from the 80s keeps playing in my head:
Everything gives you cancer, Everything gives you cancer, There's no cure, There's no answer, Everything gives you cancer'.
Julia
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Hi Gals, I haven't posted for awhile but do keep up daily on everyone. Bless you all for keeping me strong and laughing. I just came from a pulmonary specialist. I have lost 50% of my lung function so I was seriously considering refusing rads. He reassured me that the part of the lung that is damaged by rads is where my current lung damage is so that it will not make much difference to me. that was very reassuring.
After I refused the 3rd FEC and switched to docetaxol (same family as taxol) I found that was no walk in the park either. I had nausea for a week and a half, unforgiving diarrhea and aches and pains everywhere. My abdomen is swollen and I look 5 months pregnant (at my age!) Next chemo is Friday. #4 and will be 2/3 done. The onc said the swelling will go away at the end of treatment. I put my jeans away until November and am only wearing yoga pants, how attractive!
Nana Baby, I am no onc, but centrally necrotic sounds very good indeed! that means the cancer is dying from the inside out. I am happy for you.
My nurses put the cold gel mitts on my feet and hands. Jeez, I am not worring about mets to my fingers and toes.......
DMom, I have lost all hair, eyebrows, and eyelashes. I too am getting very long peach fuzz on my cheeks. It's not great but seeing as it is the only hair I have, I guess I'll keep it for now.
Northern Girl, hang in there. We all know someone who has passed from breast cancer. It is very sad but doesn't mean it's going to be our story ending. Keep fighting girl!
I did see a bald realtor stuck in the sand pit on the way home, but she looked so scary I didn't stop to help........
Love and Hugs, Mimi
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HI Northern Girl,
Taxol (Paxitaxol) and Docetaxol(Taxotere) are not the same drug but they do come from the same plant source....the yew. So to say they are sisters. I hope you feel better and I know it is hard to hear of others who have died from breast cancer but there are others who have lived. You cannot live by"what if" cause if we all did that we would go mad. It is hard but everyones journey is individual and their fate should not be compared to that of another.
Take care,
Trusting
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Hi NannaBaby,
I am due to start Taxotere on Aug 23. Let me know how your treatment goes as I am curious to see how people are doing. Have you started yet?
Take care,
Trusting
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julia- Yeah, I'm starting to wonder if anything is safe to eat! I found this study on the alternative thread. It studied over 30,000 women. Those who ate a small amount of high quality chocolate daily had 32 % lower incidence of heart problems. I'm off to find my son's Godiva stash!
http://www.pharmpro.com/News/2010/08/Chocolate-Linked-to-Lower-Risk-of-Heart-Failure/
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mimi and designer mom- I can't remeber the title of the thread but I read some other ladies talking about facial hair that they got during chemo similar to yours and it fell off after a couple of weeks or months. Wish I could remember more.
My latest weird side effect were dozens of little goosebumps on the backs of my hands for about a week.
Eating choclate ice cream right now and wondering how I will ever reform my eating habits once chemo is done! I was the original Pillsbury Dough Girl. Right now I am just eating whatever I can tolerate. Man o man I'm gonna need to work hard to eat right.
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mimi9186...so that was YOU who left me in the sand pit to find my own way out!
Still suffering from the indigestion/GERD and the best position for relief is stretched out with a slight backward arch so sitting at the computer isn't good now. Taking Prilosec and was almost symptom free until a few hours ago. Will continue with it for a few more days to see if I can get this under control.
Got an email of one-liners today and the one that seemed to fit best now is "Women will never be equal to men until they can walk down the street with a bald head and a beer gut, and still think they are sexy." I figure I'm there... I'm bald and proud of it, after all I've been through. I'll skip the beer gut...a round face from steroids should be a fair trade! Equality...hear me roar!
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Hey ladies,
Found out today that I do have to have rads. He said 28 to 33 tx, he's not sure yet about the boosts. I will start 2-3 weeks after Taxol, its up to me, depending on how I'm feeling. He said this should be much easier than my rads for colon cancer last year. He also said that I was the "outlier", meaning I had more problems than most. So, if I happen to get a really bad skin reaction, we can always take a break. I will have the chest wall, nodes in the clavicle area, and some axillary nodes radiated.
I knew that's what he was going to say, but am still disappointed now that its been confirmed. I should be finished the beg. of Dec., so I told the principal at the school where I work that I would take a leave until after Christmas break. But between you and me, I'm not going back until I feel well, and have had some time to enjoy life a little bit!
I'll have to do some more reading about nail problems before I start taxol next Monday. My nurse didn't say anything about gel packs for the nails. Not sure how much I care at this point! And I'm already gaining weight back! Hopefully I'll lose some again on Taxol--that's been the only good thing about chemp!
Thanks for all the health info! Has anyone read the "Anti-Cancer" book? It has lots of good info too.
Take care!
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hi girls, iv been having a really hard time, the Zoloft they gave me is not working and making my emotions worse, i backing off on them and maybe they can give me something different. i hope so cause i cant go on like this, im in a hole, i see ONC thursday. i get to see a therapist tomorrow and maybe she can help me cope, im. a mess everyday, in the mornings i notice i cry the most.
Tmarina and i both start Taxol Monday, im scared to death but we have to do it!!!! right T? i wonder if Taxol messes with your blood counts? anyone know?
Bon im so sorry for all the crap your going through, wow! i wish they could put us in an induced coma till its all over,
Janny i had no bone pain after the shot, i had to get 4 after each AC, i pray you dont as well.
latte that was just so wrong!! im sorry you went through it, im glad she is gone!!!
Designermom, im trying to hang in there, i really am, i still wish you could click for us
Tmarina, monday is coming fast, im scared! no reactions ok? we will sail through it!!! now if i can just get my emotions under control
Love to all, Chey
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So I just took a Xanax for the first time in a month. I'm really having lots of anxiety about tomorrow's Taxol treatment. I feel very unprepared. I cut my nails short and will put on the tea tree oil in a little bit. I took a Claratin in hopes it will ward of bone pain.
Not sure what to do about the whole ice packs on the hands and feet thing. I think I'll bring stuff with me and talk to the onc. nurses to see what they say. I really don't understand how my onc. could think it would cause a problem. I'm very scared about having an allergic reaction while they give it to me too. Guess I'm just scared of it all!! -Donna
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Cheyenne...I'm so glad you will get to see a therapist tomorrow, get your anxiety meds changed and maybe learn some additional coping strategies. Hang in there. We are here for you.
And TMarina, I'm sorry you have to do rads again. I don't relish doing them once and can't imagine how difficult it would be to do it again. You, my friend, have been through so much, and yet your spirit is so strong and positive. You are an inspiration.
I think we all need a good laugh every day so here's my contribution to the preservation of your funny bone...I found this video of my patron saint, Rosanne Rosanndanna, the Weekend Update Medical Correspondent, talking about smoking. The guy who complains in his letter about his ill health after giving up smoking sounds like us here on this board! Hope it gives you at least one good belly laugh...that helps your breathing, gets oxygen into your blood and promotes better overall health. Laughter just makes me feel better!
I can't get it to post as a direct link so you'll have to cut and paste it into your browser...but it's really worth the effort.
http://www.hulu.com/watch/4147/saturday-night-live-roseanne-rosannadanna-on-smoking
And remember the words of Miss RR..."It's always something, If it's not one thing, it's another". Sort of like chemo tx, hey?
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Workermom, Didn't mean for my post offering a link to a funny video to come right after your writing about being fearful. Seems like we are all scared every time we go for a tx, no matter what it is. How I wish we were all past this. Best of luck tomorrow. I'm sure all will go well. Bon
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Chey--yes! We will get through this just fine! Then DONE with chemo!! Hope all goes well with the therapist!
Workmother--I'll be thinking of you tomorrow and I'll say a prayer too!
Thanks for the kind words Bon
I'm on my way to bed now, but I'll for sure check out that clip--loved RR!JFV--I wonder about my eating habits as well--hope I can eat better when this is all over!
Nannababy--good news on the MRI! Hope taxotere goes well for you!
Northerngirl--its tough when someone we know dies of cancer. It reminds us of what we are trying to forget--that some people do die from this disease. I hope you find peace, and the courage to fight on! We will be ok! This treatment that is kicking our butts is also kicking cancer's butt!!
Night everyone!
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cheyenne- I'm so glad you are seeing a therapist tomorrow. Hopefully she can tweek your meds to help you get through treatments more easily. You can do this. Look how far you have come already!
workmother- Remember how scared you were the first chemo? Remember how it wasn't nearly as bad as you thought? I bet this new regimen will be the same. The first time is scariest. I'm sure they will go very slowly and watch you carefully.
For all you lovelies who are beginning Taxol this week, remember what Jane (wasn't it?) said. "You don't have to be brave, you just have to show up. I'll keep you all in my prayers.
Bon- You sound a teensy bit better? Thanks for the Rosanna link. I haven't enjoyed her in years. Forget how downright hilarious she was. I had another thought about your digestive mess. Would you consider acupuncture? A lot of BC ladies have used it very successfully for SE.
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Thanks girls for your kind words... the fight goes on, and I have to believe in a positive outcome... but hearing the outcome of other girls who are my peers kinda takes the breath away.
My prayers go out to TMarina, Trusting, Cheyenne and others who are starting Taxol treatments. The infusion starts real slow to make sure there is no adverse reaction. We're cheering for you girls.
Has anyone been prescribed gabapentin with their Taxol infusion? My onc prescribed it for my next infusion to deal with the bone pain. I start the day before infusion and continue for a few days. I hope it does the trick.
Oh dear, my middle daughter wants us to meet her new boyfriend. She seems quite smitten. We decided to go out for dinner as no one here has the energy/desire to pull together a decent dinner. I guess I will try to persevere with the wig, though it gets quite itchy. I still feel quite self conscious with my bald head/puffy face/sparse eyebrows... oh joy.
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dmom - i also saw i have long peach fuzz on my cheeks (especially on the side that I don;t sleep on) - i was wondering if maybe it was always there but i didn't notice it because i had hair. Now I know it is a chemo thing...
cheyenna - taxol also affects blood counts, but not as badly as AC. I have had 3 weekly taxols so far, and my counts are decreasing with each week, but so far they are still ok enough for tx. with weekly taxol, they don't give neulasta (I think with DD they do) - they told me that if my counts drop too much then i willjust postpone a tx for a week to recover
workmother - take whatever you need to reduce anxiety - i found that i was feeling physically ill on tx days, then started taking ativan just before tx and realized that it was stress related and it really helped me
tmarina - sorry you have to have rads again, hope this timeyou will be in the "normal" curve in terms of reactions. As the rads expert in our group :-) can you pl,ease tell me what is a boost and how do they decide how many tx and how many boosts?It's funny, i feel like a chemo expert now, butknow nothing about rads yet (I still have to have surgery after chemo and before rads so i have some time to learn these things still)
i found a nice thread on this site if anyone needs inspiration - stage III 5year plus survivors telling their stories: http://community.breastcancer.org/forum/67/topic/748445?page=1
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Melinda - if you are considering a bilateral mastectomy, then get a 2nd opinion. Go visit with that plastic surgeon (and a breast surgeon, too). Mine was performed by both. I was convinced to get a BMX after visiting my PS, who is my favorite doctor of all my doctors. My original BS told me she was going to do a lumpectomy & radiation. I asked about my options and she looked at me like I was crazy. I asked for gene testing. She said, "we can do that down the road" - I got her to refer me to the gene testing place and 2 weeks later I found out I was BRCA1+.
Even though my cancer came back, I am still happy with my decision to have a BMX. I am also going to get my ovaries removed. I am trying to prevent cancer from coming back anywhere else. PM me if you need more info on the BMX surgery.
Good Luck!!!
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Cheyenne - I am so glad that you are seeing a therapist. This BC and chemo thing is for the birds! I hope you can find ways to cope better. Please keep us posted. I'm doing the weekly Taxol thing. I'm going in for #2 tomorrow. It was much easier than AC. I had a few days where I took a nap and slept more, but had very few SE's and no nausea. Good luck!!!
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I forgot to mention that I brought baggies of ice with me to chemo last week. I put them on my finger and toe nails. My onco passed by me in the chemo suite and asked me what I was doing. I told her I was trying to prevent my finger and toe nails from falling off. She told me that she hoped it worked and gave me the "OK" to do it. She's not a big fan of the ice caps for the head though - something about messing up with the circulation. Interesting, huh??
I started getting dark half moons under my thumb nails after my last AC. I wonder if it's from chemo and the pressure I put on them with my Blackberry. Strange, huh???
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TMarina and Kitttycat You really are fighters hang in there.
Workmother I'm on Long Island also and get my second dd taxol this afternoon at LIJ. Where do you get chemo?
Norhtern girl and cheyenne- I constantly struggle with fear,depression and anxiety too. Don't beat yourselves up. it's part of the disease. We'll get through this.
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Goodmorning ladies..
I hope someone here can help me.. I have my second treatment of Taxol tomorrow and the information that I am getting here is nothing that was told to me by my onc.. Should I be worried about permanent baldness and my nails falling off.. Am I reading all this correct, these are side effects of Taxol?
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VickyThomas - as far as I know, permanent baldness is a very very rare side effect of Taxotere (not Taxol) - there's another thread somewhere on this site that discusses this with people who it has happened to. Nail damage is a possible side effect of taxol (and taxotere). But at the end of the day, i think cancer gives more to worry about than hair loss and nail damage, so i don't worry about the SEs as long as the chemo is killing the cancer :-)
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