Taxotere, Carboplatin and Herceptin
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I am stage 4 with bone mets, ER+ and HER+++ and have been told that Herceptin may be "forever".
I just finished round 4 of TCH and for the first time my oncologist suggested that pending the outcome of scans they might stop the chemo. Has anyone else heard of this? He stated that there was no evidence to show 6 rounds were better than 4 and I would continue with Herceptin and hormone tx. I still have surgery and rads to do also.
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I just started tch a week and a half ago and I'm finding it surprisingly tough. Managed to settle the acid reflux, suffered through the worst head cold of my life, and now everything I eat tastes as if it were laced with arsenic. Also seem to have damaged my left index finger - black area radiating from top of nail, swollen sore finger tip. Don't know how I'm going to manage months of this.
Any suggestions about what to eat? Does the bad taste come and go?
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LaurieD: For me, the bad taste (I called it sewer mouth) got severe around days 3 - 5 after treament. It started lasting longer as I got more treatments but more or less went away before the next treatment. Since you are on your first, I hope your bad taste doesn't last more than a week. I am two and a half weeks past my last treatment and still have some lingering sewer mouth.
I had specific cravings during my treatment. After a treatment I would start off with smoothies, scrambled eggs, yogurt and bananas. Then I would start craving beef. Around the third treatment I had a craving for ham. Other cravings were McDonalds hamburgers and chocolate shakes, Japanese pan noodles from Noodles & Co, pizza. After #5 I wanted spaghettios and sloppy joes. Crazy. I have a freezer stocked full of past cravings. Early on I also ate a lot of baked potatoes. Someone had advised me bland food was best. Then I would get a craving and no more bland food. Good luck.
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Thanks TF80209
That's encouraging. I was floored by how widespread the bad taste was. Oatmeal, noodles, chicken... The only things I could find that did not have the awful taste were Welch's grape juice and Horlick's drink. Even bananas taste wierdly bitter. Who can't eat bananas?
I guess I'll keep taste testing. It's such a shock when your mind expects one taste and your tongue transmits another.
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Hi Everyone! I don't get on as often as I'd like to....but I don't want to lose touch with any of you. Cindy and Leslie....we've been going through it since practically day 1! Sounds like you both are doing well.....I'm doing pretty well. Guess I need to have an ob-gyn visit and mammogram since I haven't had that yet....My mammogram never showed anything in the beginning though so maybe I need a different test. Cindy are you on anything like aromasin or femara...couldn't remember if you were ER+....How are you doing with the aromasin, Leslie? I am still tolerating the femara...although I do feel stiff a lot of the time. I try to take hot baths and stretch more and walking seems to really help. Hope work is going well...... Keep posting so we don't lose touch!
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I'm DONE with rads! Woo-hoo! It is a wonderful feeling, that's for sure. Thanks for all the good words and support.
Terri, you lucky duck - I was thinking that I could sure use a good massage! Take total advantage of it, girl! Have one for me! I am not sure if you were the one talking about the Sharpie marks - but I used a little bit of rubbing alcohol. I did not let them tatt my clavicle because I already had 6 and enough is e-freaking-nough! So they had to measure that mark each time because even just showering would rub it off. I was a little more careful when they did the boosts, and the marker was literally all over my boob - and my clothes! Make sure to wear dark colors and bras during that phase!
Welcome, Laurie D! I am sorry that you have to be here with us. And I am sorry that you have chemo-mouth. I hated it. Sweet things were usually okay for me, and sucking hard candy helped. Also, you can maybe try gargling with baking soda and water. It doesn't last long - but it was a little helpful to me. The black nails are a side effect of taxotere. I did not have nail changes, but I know that they are not uncommon. Ask your onc if you can take some B-12 or biotin, both supplements that promote (among other things)nail health. If he tells you its not okay, try foods from this list: http://dietary-supplements.info.nih.gov/factsheets/vitaminb12.asp#h2
which are good sources of B-12.
Good Vibes - congrats on finishing chemo! Now if they only had herceptin in pill form, right? Will Barb be on herceptin for a year?
Cindy and Katymom: Good to hear that you are both well. I am in the same boat that you are in, Katy. My mammo did not show anything - nor do I expect them to since I am in my 30's. My breasts are too dense, so I sure hope that they have a Plan B for my screening in May. Guess we burn that bridge when we come to it - right?
Well - on to hormonal therapy for me. I guess they will talk about that when I have my herceptin on 2/12. They did not mention on Tuesday, I guess it slipped my mind to bring it up. What a long journey - glad I have such good company!
Nan
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hi everyone, I don't get back to the website as much as i would like to these days. they really have me working 24 hours a day. after almost 8 months of not really working, i'm finding it difficult to care as much about my job as I used to. seeing sick people only reminds me of my own journey and makes it hard for me to forget about breast cancer.
to all of you who are new to this site, welcome. I found this site to be the most useful during my chemo and radiation.
cindy and katymom, how are you doing? i hope you are both doing well.
nan- you and i are in the same boat and have almost the same stats. I am on zoladex and aromasin for my hormone therapy and still doing herceptin. I am 30 years old and my physicians are doing MRI's once a year and then mammogram/US once a year, I'm alternating between the two modalities so that I'm getting imaging every 6 months. I haven't had a mammogram since finishing chemo, but I got my MRI this month, thankfully it was normal. you may want to ask your oncologist about getting an MRI once a year.
hope everyone is doing well.
leslie0 -
ok quick question. For those of you still doing herceptin by itself,,,,,,do you have any side effects? I have another cold or something,,,lower back pain,,,,,,and it seems like I had one of these about a month ago. Im wondering if it has something to do with the herceptin. Any thoughts ladies?
Cindy
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Cindy-it's interesting that you should mention the cold thing. I was doing fine on herceptin, but starting Nov, I've had recurrent upper respiratory infections, mainly nasal congestion that I can't get rid of. also, i have a drippy nose, everytime I bend over, my nose runs. On the other website I belong to, several women say that they have the same problem on herceptin. my breast surgeon said she's never heard of that, but I recently started using my Flonase nasal spray again and the stuffiness has improved.
I also have back pain too, but I thought was due to hormone therapy. in fact my back and left foot hurt so bad that I ended up getting an MRI to make sure it wasn't mets causing a compression, luckily that was negative. If your back hurts for more than 2 weeks, you may want to mention it to our oncologist, just to be safe. i hope all is well. we go back so far!
Leslie0 -
hey girls......hope all is well with everyone. Yeah Nan,,,,done with rads,,thats awesome. Katy,,,,,,,I am er negative so no hormone therapy for me. Leslie,,,,,I used to have lower back pain on an occassion so it seems like that part is nothing new for me. I will mention it to my onc next time I go for herceptin. I wasnt sure if it was from lifting my grandson or something. But then I started getting achey which felt like the flue or a cold coming on. Weird huh? But I will ask for sure in two weeks. As I got to thinking about it,,,,,,my hubby and I were talking and I told him that it seems like I just had a lil cold about a month ago, and he said,,,,,,yeah thats right. lol So I will ask for sure.
To all of you new gals here,,,,,,,,,good luck and hang in there. There is light at the end of the tunnel. I also had that metallic taste in my mouth and the only thing that tasted ok was milk or a milk shake. The taste will go away,,,,,,trust me.
Take care all,,,,,,,,,keep in touch.
Cindy
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Hi Cindy,
I'm still doing Herceptin too. I'll be finished in March. I notice the day of I'm exhausted (probably the benedryl) and then I get some tummy upset, sometimes rather "urgent" if you know what I mean. I get the runny nose off and on for a couple of days. I haven't really expereinced the cold symptoms tho. Do you get the benedryl in your pre-meds as well? Maybe that would help a bit?
Terri
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Just want to chime in for the girls having trouble on TCH. I did it too and it is tough. I finished in June and looking back now, it doesn't seem that bad. HOWEVER, it's a totally different story when you are going thru it. I did every 3 weeks, so that week before my next tx was like a party! I would feel great and be able to pretty much eat what ever I wanted and almost have all my energy back. Then they'd blast me and I would be miserable for about 4 days, gradually feeling better till I was back to normal and then they'd blast me again. I always say that it's tough but doable. I was very grateful for my week of feeling good before the next tx. That always gave me something to look forward too between treatments.
My two biggest tips, stay away from anyone who is sick! You don't want to have to postpone one or more treatments for getting sick. "June 15th" (My last treatment) was my mantra to get me thru the hard times. If I had gotten sick and had to postpone a treatment, I would have been so bummed. Stay healthy and power thru it so you can get it over with.
Also, I had terrible nausea, couldn't even keep down water. I didn't find the right med combo until my last two treatments. I just thought I was "supposed" to suffer through it. If your nausea is very bad, keep asking for new nausea meds till you find the right one that works for you. There are so many that work very well. The point is, never be more miserable than you have to be. Tell your doc honestly if your meds aren't working that well for you. My last 2 treatments were much better after I found the right meds!
Also, I promise... three months after your last treatment, you will look back and not remember that much and it won't seem that bad. You'll soon be on this board telling others the same thing. Our brains have an excellent way of blocking out the bad stuff! My prayers are with you all. Stick to it, stay healthy, do whatever you can to make yourself as comfortable as possible, be completely and totally SELFISH! You will get thru it and live a long happy life... chemo WILL be a distant bad memory!
Terri
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Hey Cindy-- i am doing Herceptin alone and it generally gives me terrible flu-like symptoms. The day after I am sometimes so overwhelmed by the chills I have 5 blankets on me and still can't feel warm enough. The severe chills lasts several hours for me but then I have the general achiness like the flu for a while. And this time I did have upper-respiratory garbage that I am thinking might have just been a coincidence.
As for the runny nose, I think that's par for the course on herceptin. My nose and eyes are pretty much always wet these days. If I were a dog, I guess I'd be in much better shape!!
The Herceptin side-effects are "supposed" to only happen the first time. Or at least lessen each time. So far, I think I have felt yucky for a while each time from the Herceptin. And during chemo I blamed it on the TC. Silly me!!
I go back for herceptin alone (no premeds or anything) this Thurs. Can't wait to see if it's somehow better this time..... Angie
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Hi all, Feb 6th I go for a PET scan to determine if I need more chemo. The cancer affected my liver too. I've had 8 rounds and really hoping I don't need anymore. Has anyone had more than 8? My Dr. stills says I have to have Herceptin every three weeks for the rest of my life. Any Herceptin lifer's out there? That has been one of the hardest things to take. I wish it could be given in pill form. Maybe one of these days it will.
Fawn
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Hi, Ladies!
Wow - lots of talk out here about SE of herceptin. For the first time, I noticed that my nose was drippy. I would think that SE associated with inflammatory responses (like the runny nose) would be reasonable to expect since herceptin is an antibody. I don't really experience too much in the way of SE - although, I do notice that I emit an odor after the infusion. It is sort of chemical and sort of plastic tubing, and usually goes away after a shower. Anyone get that?
Leslie - Are stats really are close, aren't they? Why did they choose aromasin instead of tamoxifen? Is it better? I think that I will be on tamoxifen, but I want whatever works the best and leaves the smallest amount of damage in its wake! I plan on pushing hard for that US, and although they have not talked about it, I am sure they will want the MRI. I had a bone scan and a few CTs before surgery - will the MRI take the place of all that?
Angie - You aren't getting any premeds? I get Benadryl and Tylenol everytime, and I assume it is because it cuts the risk of me going into anaphlylatic shock and spiking a fever in the chemo chair. I guess that makes them nervous!
I thought everyone got premeds everytime. Fawn - You keep us posted, girl. I hope that the PET shows that you ahd enough chemo - I am sure that you feel like you had enough. I don't know what determines who gets herceptin for a year and who gets it for life, but I know that a pill would be nice, that's for sure. I think that I would even take an injection. Hey - if they can do it for insulin and epi-pens, I would think that herceptin injections are on the horizon! Hang in there
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I had my first herceptin-only treatment yesterday. I did not get premeds before they hung the herceptin bag. So far I have not suffered from chills or any other noticeable side effects. I had severe shaking chills (but no fever) after my first two chemo treatments, only when lying down. Once I bought a heated mattress pad, I didn't get them anymore, go figure. My eyes have been dripping for weeks and my nose started dripping last week. I think that is when I lost my nose hair. Lower eyelashes are gone, upper eyelashes are very thin, eyebrows barely hanging on. My scalp is getting a dark shadow to it so maybe something will be growing back soon. Terri.
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Hi girls
Sorry I haven't been here for a while the radiation visits took my time, but now I have finished yeh! with no real problems to my skin so I was thankful for that. Congratulations Nan on finishing aswell.
Now it is just herceptin every 3 weeks and I always get the pre-meds and touch wood don't have any side effects. My onc doesn't want to see me for 6 weeks and as he said he is letting me loose. No mention of hormone treatment maybe they have forgotten about that! Welcome to the new girls on the site, I finished chemo 3 months ago and it feels like it went by so quickly and life returns to normal. My hair is coming in fast but not ready to throw the wig just yet.
Sarah
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Hi All,
I also haven't been on as often as I'd like. For those who are new, I had a similar experience to terrirites above. The first week was awful, the 2nd week was better, and the third week I felt normal and then I would get slammed again. After my first tx, during which no anti-nausea med worked for me and I lost 8 lbs. in a week, I was prescribed Emend for all subsequent txs, and it worked (along with Ativan at night). The weird taste was always gone by the third week, just in time for another round.
Also, after my 4th tx, I read on one of these threads about crashing from the steroids. So if you are getting dexamethasone for a few days after the chemo, ask your dr. to wean you off VERY slowly. I found myself in the depths of despair (while taking an antidepressant) about 4-5 days after my chemo tx. For my last two txs, I weaned off slowly and did not experience the emotional crash.
I am okay. I had my bilateral implant exchange surgery on 12/27. Over the weekend I developed a rash over my right breast and under my right arm. I was terrified that I had skin mets, but it turns out to be shingles (or possibly herpes simplex, they aren't sure, waiting for culture to grow). I guess surgery can activate the virus. It's a mild case, and I hope it stays that way, but I now have a tiny blister on the inside of my left eyelid, so I go to the opthamologist in the morning.
Otherwise, life is swell. (not feeling so positive today).
Carolina0 -
Carolina,
Yes, my savoir was Emend as well. I went through about 4 different nausea meds until that one saved the day. I still used Compozine too and the combo helped.
Got results of my PET today. Everything looks good "but" (hate that) had some activity in left (affected) side lung. Doc thinks it's just scarring from rads, but sending me for CT next week. My lump was inside left so Radiologist told me before RADS that there was no way to avoid skimming the lung. So, I feel confident that's it, but still, BOOOO :-( would have LOVED to just get the all clear and no worries for a while. Thank Goodness for this site, gonna do a little research on false pos. PETS. Hey, better a false pos. than a false neg, right?
Prayers for all!
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Nan: I am on femara....I can't remember why we didn't go with the tamoxifen, but I think it had to do with HER2 .......somewhere I thought I read that tamoxifen didn't work as well with HER2....I can't really remember, but you might to a search on tamoxifen vs. aromasin or femara....I know there was a reason. I had to take lupron, too to make sure I was menopausal so I could have the femara just like Leslie.....Good luck.
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I started rads last week. Had my seventh treatment today. So far no major side effects, just some aches once in a while. Nan, I had a massage for you today. There was a cancellation in the schedule so I got the appointment. I don't want to work the rest of the day now. I hope to get on the regular schedule soon.
For those who are finishing up chemo -- there is hope. I am 4 1/2 weeks out from my final treatment. My taste buds are back. Neuropathy is gone. My discolored nails are growing out. I still have blocked tear ducts. Lower eyelashes are gone. Uppers are working hard to all fall out. Eyebrows are hanging in there. My hair is growing back. I had a shadow on my skull for about two weeks and this past week the hair broke through. I figure it's about 1mm long! It looks dark (my hair was brown) so I'm afraid I may get chemo gray at first. Still no hair on the pits. I shaved the stubble on my legs to monitor that growth and haven't gotten stubble back over the past week.
I've had one herceptin-only treatment and had no side effects from that. Time to start exercising more regularly.
Terri.
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YEAH!!!!!!!!! NO MORE CHEMO!!!!!!!! I still have to have the herceptin every three weeks and take tamoxifen for 5 years. I hope I never have to have chemo again!
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Hi Ladies,
I was sick for a while and I missed visiting this group. I was actually too weak to sit at the computer. Started rads on Dec 3 and began to cough and feel bad right before Christmas but chalked it up to the radiation. The techs and rad onc didn't seem concerned. By the time I got to the 32nd treatment I could hardly walk so I stumbled over to the med onc office and he put me in the hosp for a week. Screw that last radiation treatment. 32 of 33 was enough for me. They ran a bunch of tests and pumped me full of antibiotics. I was hooked to that IV pump through my port for 7 days.
Long story....no bacterial infection but it could have been viral pneumonia or some radiation induced condition. My blood counts were really low, lower than when I was doing Chemo. I think it was radiation induced but the rad onc says no. Not surprising....they wouldn't own anything except the burns, the rash and the cough.
Here is the good news. I am feeling better........it's slow but I'm moving in the right direction. I have 1/2 " of hair so i ditched the wig. The ridges on my nails from the Taxotere are almost gone. And I have eyelashes and eyebrows again. I had a hard time with the treatments and I am relieved they are over. I know they treated me aggressively because I'm stage 3 but Geez......I was down on my knees.
I still get the Herceptin every 3 weeks--no premeds --and I have no side effects except sometimes I get watery eyes.
Onward and Upward.
Leslie2
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Hi everyone. I've been reading this forum for a couple months now, and it has really helped a lot. I am 33 and was diagnosed w/ breast cancer- had a double mastectomy before christmas, the cancer spread to my lymph nodes, retina's, neck, spine, ribs, hips, lungs, and liver. After the mastectomies (i opted for a double) they found a separate breast cancer in my right side too. crazy what a fine line life really is, hugh?
I'm on Taxotere, carboplatin, Herceptin, and (neulasta?? i think....i'm not nearly as educated as any of you on any of this stuff...but i'm learning) i go every 3 weeks, and just got my 2nd treatment on the 15th.
I haven't had too many crazy side effects...(knock on wood! ) bald of course, losing too much weight, a bad rash on my face, nausea and some vomiting but the pills work for it.
One question for any of you though- have any of you experienced a non stop period? I used to barely have a period before this because i play a lot of sports, but since i have started treatments, i bleed constantly. I told the doctor and he said that I may have to start taking birth control (i'm not on it now- my husband can't have kids) to regulate things. the thought of taking one more pill just makes me sick. Im sure like all of you, i'm SO sick of pills and meds!
Any advice?
Thanks for all of you for sharing everything you do on this site. I am sure i can speak for everyone, it has brought me solace many a feeling blue late nights...:)
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Special K: I would call for an appointment with your gynecologist right away. The constant bleeding would concern me. Chemo put me into menopause. Because of my age (44), my oncologist thinks it may be permanent. My gynecologist says it may not be permanent. Some women have had their periods return after a year or even two of not having them. I was told to call my gynecologist in case my periods do return to make sure they aren't being caused by something else.
I'm glad to hear you aren't having too many side effects. It's been six weeks since my last treatment. I still have blocked tear ducts and the night sweats. My onc added Neurontin to my pill regimen (also taking Lexapro; that helped reduce the frequency but did not diminish them).
My oncologist just prescribed tamoxifen (I'm ER+) but is having my blood tested to make sure I will metabolize the drug properly. I'll wait for the results before I get the prescrip filled. I'm glad there is a test for this before I start taking it.
I have four more weeks of rads. On the schedule again for a free massage after treatment on Thursday. That is a nice perk.
Terri.
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Thank you Terri. I will call. My oncologist didn't seem worried, but it worries me because i'm dealing with it.
You said you were done w/ treatments and had started radiation- how long/ many chemotherapy treatments did you have?
I usually get massages a lot, but i've been afraid to because i didn't know if it was OK w/ the mastectomies and the soreness w/ my left arm and lymph nodes- did you get masssages during your treatments? Sure would help with the bone pain.
Thanks for responding to me.0 -
Special-K:
I had six chemo treatments, three weeks apart. I started 9/24/07 and had my last one 1/07/08.
I would ask your oncologist or the chemo nurses if a massage would be OK during chemo. I did not get any massages during chemo. The ones I get now are offered through the radiation oncology department where I get my treatments. The massage therapist is trained to work with cancer patients. I had to fill out a form listing any problems I was experiencing from my treatments and my rad onc gave me an exam before she authorized me to get the massages.
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Hi ladies,,,,,,,,,,,,havent posted in a while. Been busy with babysitting my grandson and painting the bathroom and all. Sounds like everyone is doing very well. I am so happy. For those of you still doing chemo,,,,,,,,hang in there,,,,,there is light at the end of the tunnel, trust me.
I still do my herceptin till May. I cant wait till that is over with. Happy day for sure. Just the thought of not having to go anywhere every 3 weeks will be great. I thought maybe the herceptin was causing me to feel yucky,,,,,but my last herceptin I felt fine afterwards. Maybe those other two times I just got a cold/flu thing,,,,,,since it was going around too. Go to the gastro Dr. today. Ever since I started chemo, I have had really bad indigestion. So the onc just wants me to get that checked out. Oooooo and she wants me to have that dreaded colonoscopy. The fun never ends huh?
I dont get on here as often anymore. I do come here off and on to read everyones posts. I have found there is life after BC........yeah. But just know that I wish you all well and think about you all.
Nan,,,,,,,,how are things going for you?
Leslie and Katy,,,,,,,,,,,,,and you too? How are you? Hair has started to come in. Only about 1 inch long, but its coming in. Very fine and kinda thin. Hope it fills in more. lol Still not long enough for public viewing though.
How is eveyones hair growth coming along? Do you think its coming in slower for those of us still doing Herceptin? I read somewhere that that could cause it to be slow growing.
And anyone that I didnt mention,,,,,,,,,,,you know that I think about you all. A few of us started at the same time, so there is a lil connection there. Guess its good that we dont post that often,,,,,,huh? Life goes on.
Take care girls,,,,,,,,,,,,Cindy
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Hi everyone,
Glad to see this thread is still going--even if slowly. I have been busy with my just-turned 3 y.o. dd. We had full time help while I was going through chemo, but now it's back to part time, so I'm spending more time with dd (yay!).
I am scheduled for nipple reconstruction and an oophorectomy this Friday, 2/29. Swapping out ovaries for nipples--what a deal, huh?
Special-K, I'm sorry you're going through so much. I agree with Terri--call your GYN and have the bleeding checked. I am in pg/nursing/chemo-induced menopause (was still nursing dd when diagnosed), so haven't had any bleeding in 4 years. Ovarian onc. thinks I'm definitely in menopause. BC onc. isn't sure. Regardless, I will definitely be in menopause after this surgery on Friday.
Leslie2, wow, what a rough ride you've had. I'm glad you're feeling better now. It's amazing how the docs won't own anything that's not a known side effect--and sometimes not even that! I also ditched my wig. My hair is VERY short, but everyone says, "You look so chic." And some have said, "Wow, you look great--what made you decide to cut your hair?" Hilarious.
Cinrae, glad life is moving along for you. Get rid of that wig, girl! You'll feel liberated. I'll be on Herceptin til August. Time is moving on. May will be here before you know it.
Terrirites, how did your CT scan go? I hope your lung is okay. Check in with us and let us know.
Everyone else, hope you are all doing well, or as well as one can do while on chemo.
I'll check back after my surgery. Wish me luck with these new nipples.
xo Carolina0 -
Carolina,,,,,,,,,,,,,Im so sorry that I didnt say your name in my earlier post,,,,,,,,,forgetful I guess. But just know that I am thinking about you. Good luck with your surgery. I know all will go great. Awesome about the nipples. Now will this be the last surgery for you on your breasts? If it is,,,,,,,thats so very good for you. And for you, August will be here too.
And the hair issue for me,,,,,,,,,,,I just cant ditch the wig yet. Its so short and so fine and seems so thin. Not ready for public viewing for me yet. But I so admire you ladies that can go topless......wish I felt comfortable enough for that.
Have a good week girls.
Cindy
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