Taxotere, Carboplatin and Herceptin
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Lisa and jsw and bon, welcome! I know this is so scary at first. I couldn't say "cancer" or accept another's kindness without crying in the beginning. It does get easier, though. My side effects have been minimal. Mostly fatigue, digestive issues (helped with probiotics), rashes (helped with benadryl), and taste issues. I am in my fifth cycle, and it has been the worst for fatigue and taste issues. I just got my tastebuds back yesterday (day 11). Before that, everything sweet tasted awful! Other than that, it's been okay. The time has flown by, and I have one cycle left.
I am also doing carboplatin. Mine is stage 3a, so that may have something to do with it.
Tammy, I know it must be so tough to be told you need to do more when you thought you were done. I would get a 2nd opinion, if possible. But I would definitely hit it with everything. I have 3 kids, too (9, 6 and 4), and I want to give myself the best chance to meet their children some day. Hugs to you.
Cancer sucks!
Dawn
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Thanks to all for the warm welcome to your forum. I just don't know how some of you do it with young children and/or demanding, detail jobs. My hat is off to you...so is my hair! Today is day 10 if my 3nd chemo round and I'm still guilty of DUIC...driving under the influence of chemo. I'm pretty steady on my feet but the lightheadedness gets worse in the car and I feel like a bobble--head doll. I can hardly take care of myself when I'm this way, much less tackle children. Bless you all.
And youngmomof3, please, please do consider the 2nd opinion approach to your situation and give yourself the chance to receive whatever chemo might do the trick. I know more surgery isn't what you want or expected, but if it's really going to be beneficial, I hope you'll find the strength to have it done.
I've been having to adjust my attitude recently and to concentrate on the fact that cancer is the bad guy. Surgery, Chemo, radiation, like it or not, is my friend. It is going to give me a much better chance at staying cancer free. So onward and upward...my round three is coming in 10 days and I need to get a lot accomplished before then.
BTW, has anyone else had an oopherectomy after all the breast stuff was done? My Mom, now 88 and still a spitfire, had some form of ovarian cancer in 1952 and breast cancer in 1980. And my father's Mother died of BC in the '70's. So the recommendation, especially since I'm ER/PR negative, is to get those ovaries out. I'm not using them anymore so don't really care about that. Just wondering what the surgery was like.
My song for the day is..."and the beat goes one...and the beat goes on..."
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Bon - I had oopherectomy at the same time as bmx with te's. The ooph was done laproscopically thru my belly button. I have two other very small incisions on the lower part of the stomach as well. Total time for this way is about 45 minutes. Belly was sore for a few days, and took about one week for the gas and swelling to go down. But not to bad overall. BMX was definitely more painful.
I had no problem doing all three at the same time, and it was three different surgeon's plus all there assistants. Total time for all three was just under 6 hours. The ooph was prophylactic for me, as I am BRCA 2+ as well. Got BC early, really did not want to take a chance and get OV either. Did you have genetic testing done?
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Stlcardsfan,
No I haven't been Brac2 tested yet. I will have to get it done if I have any hope of insurance paying for the surgery, but am waiting until after chemo is finished because the intake coordinator of the BRAC2 testing is located another 45 minutes farther South from my already 45 minute drive for chemo. And with my "DUIC" going on, I try not to drive in heavy traffic much if I can help it.
Chances are that I'll be positive. Oncologist is adamant that it come back + he will drive me to the surgeon himself.
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Hey girls, thanks so for all of the input.and for reminding me of what I am fighting for. I am starting to come around to another round of chemo. Just needed to be pissed and sad yesterday and now I can get myself in a better frame of mind. I know that this cancer is tough so I have to be tougher it is just that some days I am emotionally spent and feel like I can't handle anymore. still working on getting a second opinion anyway.
Bon, welcome. love the DUIC but just be careful. I was so out of it for the first few days following chemo although prob more because of the benedryl. My theme song is "Beat It" by the one and only Michael Jackson.
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In case you're wondering, I changed my photo to reflect my current bald status. Uncle Fester is a good match. On days when I'm green around the gills from chemo, I'll be Shrek.
You gotta laugh, right? Have a good day ladies. Bon
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Bon, I like your picture. that was me a couple of years ago. I never posted my picture because I just could not bare the fact that chemo aged me so. I am not young but I always looked younger than I was and now I look older than I am and certainly feel older. I think I did look like Uncle Fester but only skinny. I have gained about 6 pounds lately. I want to get that off though. Onc told me not to gain weight. Easier said than done.
Youngmom, I do hope you get a second opinion. I was stage IIb and grade 3 had 4/22 lymph nodes positive. My surgeon took all he could find he said but the little ones are so tiny it is hard to find them. My armpit seems to have more feeling in it this past week and has hurt a little. May be nerves growing back. I don't seem to be so numb now either. this just takes time to sort it all out but if you even have to have 2 more opinions it would be worth it. I was ER-/PR- Her2+ also.
Hang in there ladies. It seems like it will never end but then once it is over you look back and say that seemed so short. You can do whatever it takes for your family and yourself.
Carolyn
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Mid-Summer Update!
I''ve had an interesting 1st half of summer.
Most of you know that my aunt (dad's sister) was diagnosed with breast cancer. *sigh* Now, I know that genetically, I do not possess the gene mutation for breast/ovarian cancer (BRCA). But this has just strengthened my resolve to have my healthy breast removed at reconstruction. If there IS a genetic component to my cancer, my aunt's cancer, that they simply don't know about, I'm not trying to tempt fate. Off she goes! And I get a matched-reconstructed set!
Speaking of which, just 32 days! I've been collecting lots of advice on how to weather this MAJOR (8-16 hours) surgery and the recovery period afterwards. Simply put, this surgery is going to kick my a$$! But everyone I've talked to who's had it done, doesn't regret it. Even though nearly every part of it is tough to endure.
I'm super-confident in the surgical team I've selected, they are among the BEST in the state (if not the Nation), and Dr. Chang, my plastic surgeon, is one of the pioneers of DIEP Flap reconstruction. I'm starting to temper my expectations, I won't be a black Barbie Doll the moment I emerge from surgery, but through recovery, 2 revision surgeries, and some additional nipping and tucking over time, I will get there. Oh, and modifying my eating and exercising is my responsibility in achieving the optimum new body from these procedures. Yippee...
I'm thoroughly enjoying the fellowship and spiritual growth I'm experiencing at my new church! They are the BEST and I'm so glad to be a part of the family!So, exactly a year ago, I was getting my last round of hard-core chemotherapy. I was swollen, extremely fatigued, anemic, and experiecing that weird combination of total exhaustion and elation. Looks-wise, I was a fat, bald, brown puffer-fish! LOL!!!
What a difference a year makes! I'm still kinda porky, but NOT EVEN as swollen as I was! I have hair, unruly, soft, curly/straight, doesn't know what it wants to be or do, hair! Almost 2 inches of it! I'm working through this. It's been amusing.
All my doctors are very happy with my progress. I've had a clear mammo/MRI since completing treatment, am tolerating Tamoxifen well, and all physical exams indicate maintainance of the NED (No-Evidence-of-Disease) status. PRAISE GOD!!!
In the meantime, everyone is trying to cram as much into this next month as possible, between work, family, friends, travel, etc...I'm gonna NEED that 4-6 week recovery just to relax from the whirlwind these next days will bring.
But I embrace it ALL! And I continually thank God for the loving and supportive and caring people who have embraced ME through all parts of this crazy journey! People survive this disease without support systems, but honestly, I don't know how. I am truly blessed to have each of you in my life!
My aunt is doing well. She's had surgery and is recovering, and now we are just awaiting word on what her treatment plan will be. She's a fighter...must run in the family!
Later Gators! Alaina
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Alaina, it is good to hear you are doing so good. It is important to have a good support system. I also have many at church who support me and it is sad but we have had a lot of people with some kind of cancer. Most are surviving now but we had lost a lot of them too with different kinds of cancer and probably later stage. I do think the fact that some of us have had it more are taking care to have those tests they need. so they are catching it early. I guess I can be a blessing in that way. It does take a fighter to get through all this but I think most of us are. If it is life or death we will fight. I am so thankful for the Herceptin to fight this HER2 cancer but other meds and the doctors and nurses that know how to take care of us. I am wishing you best in your trials as far as the weight. I know how easy it is to put on and so hard to take off but you can do it. I have gained a few pounds but I think salt is the culprit these days. tomatoes just don't taste as good fresh without it but I can do it.
I wish everyone a good day.
Carolyn
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Alaina, it's so great to see you here. I'm so sorry to hear about your aunt. It's good she has you, your experience, and your positive attitude to draw on.
I am so happy to read your news of continuing NED status! You are so close to being done with everything, though I understand this next step will be very tough. You have always gotten through everything with such strength and grace. I expect the next surgery to be no different. You have been such an inspiration to me through my journey. Thank you for that.
Dawn
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I have type I diabetes in addition to the bc, and neuropathy can be a complication from the diabetes. So I asked my onc about the risks of neuropathy from TCH. He said that the risk is much less than with A/C - TH, which is why I chose the TCH.
Did any of you have neuropathy from TCH? And did icing your hands and feet help? I've heard several people mention this. The onc says "there's no study to show that it helps". But of course, he can't stop me from doing it if I want to.
Thanks in advance!
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lisasinglem,I had neuropathy during chemo and Herceptin. I got better after I was off the meds. I had it some before cancer but it was worse with chemo. One thing that seems to be with chemo is that it will get back to your normal. I would plan on having it and if you want to try the ice then I say try it. It can't hurt unless you get it too cold. Ice can burn you and damage your skin so hit the happy medium. It was so cold in the place where I took chemo anyway but you can buy caps and gloves but I never found any socks for it. My feet seemed more affected by it than my hands but it was there also. good luck! I hope you can not have anymore but keep an eye on your diabetes. It is easy to worry about your cancer and neglect another problem.
Carolyn
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Lisa, I developed neuropathy in both hands and feet during chemo. I finished Herceptin only last April, but the neuropathy got worse instead of better so my oncologist put me on Nurotin. It has not only helped with the tingling in hands and feet, but also the nerve flashes from the bilateral mastectomy. I've had no side effects from the Nurotin. The only draw back is that you have to take it 3 times a day. I go back to my onco in October and maybe I can be weaned off the stuff.
hugs gals
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Thanks for your replies redgarding BLM. I've decided to go ahead with the rads as I want and rad onc. strongly recommends rads to aux nodes and supraclavicular nodes. Also, my family physician recomends this, as well as meeting with the surgeon afterwards. So for now, that is what I'll be doing.
Hope everyone is having a fantastic day and enjoying the sunshine!
Cheryl
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gramma23 and swampy - Thanks for the info on the neuropathy. I guess like everything else involved with bc, every body is different and responds differently. I'm going to try the first round without the ice, since my hands and feet tend to be very cold anyway.
gramma - I have been taking really good care of the diabetes. And it has in surprisingly good control through everything - even the surgery. Thanks!
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Anyone here have a delayed reaction to Taxotere in the form of a rash? I'm on my third day of welts and blotches that come and go and cover my arms, legs, back and chest. Sometimes even my stomach. The Taxotere literature says it's common and severe in 5% of the cases. My onc tried to say it wasn't the Taxotere because it started 12 days after infusion but the literature from the manufacturer says it generally occurs between treatments and usually goes away before the next round of chemo. I'm going to call the manufacturer for clarification tomorrow. I was treated as a crock or hypochondriac by my onc and I'm mighty unhappy. I did get Prednisone out of him because 50mg of Benadryl only worked for about an hour. So maybe by tomorrow I won't look like a stripped lobster.
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Bon - yes I sure did. On day 5 after my 1st tx my neck and upper chest broke out in what looked like a very bad sunburn. It had a tendency to burn from the inside out, if that makes sense. Anyway, my onc. prescribed lotriderm cream which helped immensely. Afterwards, she added benadryl to the premeds. Hope that helps some.
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Bon~ I had a rash and I looked like I was sunburn AND a teenager at the same time. Eventually I had to take a steriod to prevent it. It eventually stopped but it wasn't until treatment 4 or 5.
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No rash from Taxotere, but a very red flush for 2 days after from the steroids.
As for neuropathy -- I read that vitamin B could help, and my onc said it couldn't hurt, so I took a B complex throughout. No tingling. I have one finger that kinda tingles now, but nothing anywhere else.
Good luck!
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Bon - I also had the sunburned look and I am getting it still on Herceptin only so not sure if it was Taxotere or the Herceptin. I totally looked sunburned in December and the rest of the winter!
I did put my hands in ice and feet on ice blocks. I took my hands out as needed to warm up and back in they went. I am just now (almost 4 months PFC) and my nails are splitting and cracking but trying to keep cuticle oil on them to help. Also got a hang nail infected so on antibiotics. My white count is down to 2.2 and neutro is 1.5. My numbers weren't that bad during chemo. Nurse said it was the rads.
On a positive note, my onc and obgyn agreed I could start taking Estrace for vaginal dryness. I am ER/PR- and they said it is such a low does shouldn't hurt. I still have no period since December 28th.
Hugs to all
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Rash update: After nearly a full days worth of prednisone, the rash is still going strong. As I type this it is spreading on my inner arm from shoulder to elbow. It's not bumps, it's long stripes...kooks like someone drew on me with lipstick. The literature says rash is common and serious in 5 of cases. This is might serious, I'd say. It's day 4, I've had prednisone and benadryl and it won't keep it squelched. I am looking for a phone number of the manufacturer to try to get clarification on this. My onc thinks this can only happen a day or two post infusion. Mine started day 13. The company insert says it happens between treatments. In my book day 2 or day 13 qualify as between treatments. So I'm gunning for bear...I want some answers before they try to give me Taxotere again.
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Bon...Between treatments means just that and no matter what "day" you are on, you are still between treatments. It can take months to fully flush these toxic chemicals out of your system so no matter what "day" a side effect manifests itself, you are between treatments. My most problematic SE was diarrhea. It was still a problem two or thee months after TCH and being on Herceptin only. It finally went away (thank God). Like Allison, I'm 3 months post Herceptin and my nails are brittle and splitting and this is a "new" SE.
Does you onco have a PA? If so ask the PA who probably has more knowledge of side effects than your oncologist. My PA was wonderful!! In fact I would rather see her than my onco. (And in fact I only saw my onco twice throughout TCH and the following Herceptin only TXs)
hugs gals
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Swampy, Thanks for your response. I just got off the phone with a pharmacist from Sanofi-Aventis, the makers of Taxotere. She is emailing me controlled study and SE info that is not part of the 70 pages prescribing document the oncs get. She is also sending my 'report' to the next level for review. I am really serious about getting to the bottom of this.
No, my onc doesn't have a PA. He has multiple partners and Brunhilda (actually Brenda), his body blocker nurse, who won't let you get to him without much difficulty and who almost scoffs at you. I'm not happy with any of it but feel as though he came with fantastic recommendations from past patients and my BS who is the best. If he said this guy was good, I had to believe him. And maybe my onc is good, but he isn't listening to me. And I think that is a big factor in judging good vs. not so good.
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Bon... "Body Blocker"! I love the description. I usually call them "the Window Witch". Every office has one behind the glass window. They can be either good or bad witches. LOL
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Swampy...big problem for me is that Brunhilda is one of the chemo giving nurses!0
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My last round is coming up on Monday. I can't believe it, my last round!
I still have my eyebrows, but my lashes are all but gone. My eyes water a lot (not from crying, they just water). Other than that, I am feeling mostly normal now, before they knock me down one last time. I'll be so happy to have this chapter over, but then it's on to surgery (likely a bmx) and then rads, with herceptin throughout, of course. What a long road. Oh yeah, then there's what to do regarding recon. Such a mess. Hopefully our next generation will have a better way to beat this thing. We are pioneers, as were the many women before us who paved the way for our treatments to be less barbaric than theirs. Hopefully we are the building blocks toward a future that won't require surgery, radiation and chemo. If so, bring it on, I am proud to be one small part of that future. Of course getting rid of my cancer is a good thing, too. Rambling once again. Sorry.
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Just picked up my RX for Tamoxifen. Trying to decide if I should do morning or afternoon dose. Think I"ll wait until Friday night so I have a weekend to 'recover.'
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Frosty1 - My onc. told me to take the tamox in the AM, but also said I could divide the dosage between Am and Pm if I needed to. She also recommended I take baby asprin daily.
Has anyone experienced leg pain/swelling during chemo or afterward? The reason I ask is all during chemo my legs have been very sore between the knee and hip. My onc said she wasn't sure which chemo drug was causing it for certain.
I just had my last TCH on July 5th, and a herceptin infusion on 26th. A few days before the herceptin infusion I noticed my lower legs swelling with alot of swelling in the ankles. Now, my lower legs/calves are just as painful as the upper thighs.
I spoke to physio about it, and they said they'd work on my legs in a couple of weeks if it didn't resolve. I also mentioned it to the chemo nurse when getting my herceptin infusion, and she, like physio, assessed for DVT, to which I have no s/s.
So here I am a week later and the edema isn't completely resolved. Still painful calves and upper thighs. My last Muga was in June and came back at 63%, and I have no SOB etc. I'm going to mention this to the Rad. Onc. on Tues when I go in for rads.
Anyone else experience this?
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The Bucket List!
If breast cancer does anything, it makes you keenly aware of your own mortality. And when you start thinking of those "things" sometimes you ponder the things you want to do before you die. You start making your "bucket list."
I prefer to think of these things as "things I want to do while I'm still ALIVE!"
I promised my BFF & SisterInSurvivorship Dana (WingsofHope here on bco.org) that I would share in doing as many things on her bucket list as possible!
So tomorrow, Dana, Tracey, and I are going JET SKIING!!! I've gone between being terrified and thrilled, and am leaning heavily on thrilled right now!
Simply put, I CANNOT WAIT! This was not an item on my personal bucket list, but I am so honored and priviledged to be by Dana's side as she checks this off of HERS!
You already know two of the things on my bucket list; learn Spanish and learn how to play the harp. Ooooh, I'm so dangerous! LOL!!!
Anywhoo! Talk to me!...what's on YOUR bucket list?
Wheeeee! And off we go!....
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Alaina,I am glad you are getting to do that. I think you will love it. Everything I want to do is too expensive so I will never get to do them I am afraid. I want to go to Alaska. Maybe on a cruise and then some exploring on land. My husband's boss just got back and I know it is expensive and since I am still paying doc bills that comes first. I would not mind going on a train trip along the Northwest passage in the fall. this is out too. No vacation left from work during that time and I did some searching about how much it costs and I might as well go to Alaska. I am pretty happy with my life in general. I do need to get a quilt finished so that may be one of my goals this winter but, it is in the hot temps I can't even think of working on a huge quilt right now. It is mostly finished just the last part of hand quilting. I guess my other thing would be live long enough to get this port out. I want to get my blood up so I don't have to keep taking shots and seeing the onc every 3 months and getting blood tests every 3 weeks. I hope you get to learn to play the harp. Do you know anyone who gives lessons? Spanish is easy but then you have to have someone to practice with all the time or you forget it. My daughter in law and sister in law speak Spanish since they are Mexican. My daughter in law has no patience with me to speak slow so she does not practice with me. I took it in school when I lived in Texas but I did not retain much of it. I have the RosetaStone program and it makes it easy. get that if you have not already.
I wish everyone a good day and also a good weekend.
Carolyn
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