Taxotere, Carboplatin and Herceptin
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Jaimieh, thanks to Bluedasher, I now know much more. Hang tight and contact your doc, it could be headed your way.
Lisa
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Awesome. I asked my study nurse (I am on the bio. trial) about it and she had no idea. I bug my onco. about trials all the time. I want to decrease my risk to as low as I can go. I got a lot of living left to do
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For those on herceptin only, do you notice increased aches and pains after your treatment? I had my 2nd herceptin only yesterday and noticed my right hip was starting to ache last night. I have tendonitis in that hip and as the day has progressed it has gotten to where I can barely walk on that leg. We have a weather front moving in tonight, but weather has never bothered my tendonitis before so I'm trying to decide if it is the herceptin. I have noticed after other herceptin treatments (the weekly during chemo) my hands hurt, but never my hip. Please let me know if any of you experience the aches!!!
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I always had aches and pains after the Herceptin only and ran a slight fever plus had stomach problems. by the next day I was better but not great and then after the 3rd day I was back to myself. I started having breathing problems during Herceptin only the last 3 times and so they had to slow down the flow to an hour and that helped. I am sure the weather is a big problem for my pains because I have arthritis but it was a different kind of ache like I was getting the flu or something. Probably just my body saying this is not supposed to be here! If it is not too bad keep taking it because it is a valuable med.
Carolyn
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Bold, I like your hair. Mine came back a brown with gray like it used to be and I can't see any difference in texture. some say theirs was totally different. anyway it comes back I am happy.
The Study, they are not doing it in my area just in Tulsa which is a good 2 1/2 hour trip so I will not be doing it. I am not sure I am healthy enough though because of my blood count problem. I am kind of turned off by the stomach thing too but they have meds to help that problem. I guess you can take meds for that on the study.
Have a good weekend everyone.
Carolyn
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Jeffrine - welcome to Herceptin and it gets worse, not better. My lower back and feet ached horribly by the time I got to the last one.. My feet still ache but it has only been 2 weeks since my last treatment.
Lisa
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Almost Halfway!!!
As of today, I have completed 13 of 28 radiation treatments! 13 you say? For those keeping track, you may wonder why only 13 and not 14...well, the machine was broken yesterday, so no rads!So that means this phase of treament will end on 11/20/09 instead of 11/19/09.
So far my skin is holding up! Tape dots have been removed and left my skin ON my body! Praise God! I will have to be scraped off the ceiling if (when) the tape dots take my skin with them (and I fear that day is coming). I've still got 3 full weeks of treatment left (15 rads), and the effects on your skin are cumulative.
I'm using prescription Biafine cream emulsion on my skin and it's really nice. I have to use it 2x a day (once right after treatment and once before bed).
So what's on tap for the weekend? FUN!!! I've never been one to get too excited about Halloween, but today is special. One of my bestest girlfriends is getting MARRIED TODAY! And yes, the wedding and reception are COSTUME! I'm going dressed as a Green M&M! LOL!!!
Tomorrow, I have a busy day as well. Church in the morning. Brunch (somewhere). My friend Sharon's Bon Voyage Party (she's going to Naples, Italy ya'll! for THREE YEARS!!!) And then zipping back up the beltway to get to CenterStage Theatre for a 7:30pm showing of "The Importance of Being Earnest" (it's 2 hours and 40 minutes long, I hope I stay awake!)
Here's wishing each of you has a weekend filled with love and fun!
Alaina
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Starting my first Herceptin only treatment this Monday! Nurses tell me that se's are not felt by most and that it is a piece of cake, not like chemo. Are most of you having se's with Herceptin only treatments??? I read that it can cause lower blood counts so wondering does that still make me susceptible to infection and should I not be around others who are sick??? I met a lady last week who told me she has some strong neuropathy problems and it started two months after chemo was over and she was just getting the Herceptin treatments. She never had a problem with this during chemo. Thought that was really strange.
Have to pick a date for my exchange surgery around the end of November or so and can't wait to have that part of this path over with and get back to wearing my "normal" clothes!
Hope you all enjoy a great weekend!!
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Blessedby4 - My herceptin only s/e's were feet neuropathy, lower back pain and large muscle fatigue. The muscle fatigue only last for about 36 hours after each tx. Compared to TCH, herceptin only is a walk in the park!!! Good for you! Congratulations! This is when you actually start getting your life back!
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Alaina, sounds like you are in for a good weekend.I hope your rad keep going good. I used the same cream but they said 3 times a day but then I had my tx early morning. they also had me use Lever soap since it leaves no oil. I still had a bad time but I think because of my auto immune problem. I had tattoos not tape. Why do they use tape on you? I know every place is different. I see the small dots somethings and I forget what they are. They are blue so that freaks me at times. with the tattoos hurting so much I would never have a big one!
Blessed, I had neuropathy after TC too, well it started at the end of them but continued for a while. I still have some but I did have a little from my arthritis before cancer. I think it will get better as the time goes on. Herceptin is a lot easier than TC but just let them know anything different that happens. Some do have reactions but it is rare. I got breathing problems toward the end and they ran it in slower which helped. I still felt bad and had a bad taste for a few days but nothing like TC. I am still having blood problems but I do not think it is from chemo or herceptin.
Hang in there everyone you are almost done. You will fell better all the time.
Carolyn
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Jaimieh, they may not let you be in the Neratinib trial while on the bisphosphonate trial. Most of the studies have restrictions about what other studies you can be on. The Neratinib trial info on clinicaltrials.gov is unusually short so you would have to contact them to find out. I think that the person I spoke to said I could be on the Neratinib trial because I was off the bisphosphonate one. (But I probably won't be able to participate unless I change my insurance.)
Lisa, interesting that they told you that Wyeth was paying for the tests rather than insurance. On the bisphosphonate trial, the extra tests and doctor visits are paid for by the insurance (and the patient if the patient has copays - I happen to be double covered this year so I don't have a copay at the moment). The drug company only pays for the drug. My impression was that that was the usual case and the person at the practice doing the Neratinib trial locally indicated that my insurance would be a problem for joining the study with them because its Kaiser and they aren't.
They haven't started the trial locally yet. Maybe I'll check back with them in a few months when they really have it going.
Alaina, I hope rads keeps going well for you. It was sure a walk in the park for me compared to chemo. We were at a wedding last night too. It was very busy for us because my son and daughter-in-law were in the wedding party and I made the cake. The cake wasn't very cooperative but I managed to rescue it. Weddings are fun but being responsible for the cake is a lot of stress.
Blessedby4, I don't think I had any side effects from the Herceptin, except for being slightly anemic. It can be hard to tell what side effects are due to what. At first when I was on Herceptin only, I had a drippy nose that I was blaming on Herceptin, but it stopped after a couple of months so I think it was just the lack of nose hair from chemo plus my normal hayfever. And I had diarrhea which I think was from the clodronate that I was on for the bisphosphonate trial - it got a lot better once I was off the clodronate, but I'm still having some on and off.
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Dang Blue I am going to have to check about that with them.... My DH thinks I am insane for wanting to subject myself to another year of drugs. I don't think I am insane I just want to be here
I am off to the OR tomorrow to get rid of the capsule in my chest that the implants used to reside in because of an infection. Frustrating I tell you..... I want to have flap surgery in January and my infections, etc... is holding me up.....grrrrr.....
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Blessedby4: I have my Herceptin infusions every three weeks on Wednesday mornings. These are the things I have noticed: Flu-like symptoms on the following Saturday or Sunday. Aches in my back and hips that never completely go away. First morning aches in my hands, which I have never experienced before. I also have noticed a continuous level of fatigue. This is all much easier than chemo and I am certain that each day my body is steadily recovering from the previous assaults of radiation and chemo.
Question - I have noticed little white growths (?) around my eyes, eye lashes and even inside my lower eyelid. They look like little white head pimples. They do not hurt, itch, or bother me in any way. Anybody have any idea what these might be?
I got some distressing news this morning. My oncologist had a heart attack last weekend and he will be out for several months. He is only 47 and heart disease runs in his family. Of course, I am concerned for his health and recovery, but I am also concerned for his patients that are in the throws of their chemo treatment. He is like an angel: soft-spoken, very reassuring. In the scary world of cancer treatment, his bedside manner is perfection. My husband and I have always felt that he was one of the many blessings we experienced during my breast cancer treatment.
Here's wishing us, and our care providers, all the best.
Cheers!
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Jaimieh: Oh gosh, I am sorry to read that your plans are being set back. You have probably posted this earlier, but what is it that contributes to the infections? Wouldn't it be great if our fourth phase of care was a rebuilding Survivor phase--complete with an exercise, nutrition, healing supplements, and counseling?
Let me know what it is your body needs to be doing and I will send you specific healing prayers.
Cheers!
Cloud
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Thanks Cloud. I have just had a ton of seroma's form after my expanders and they caused my inplants to fail. My PS thought that once my implants where gone I would heal but my body has just continued to make fluid and it is now infected. I hope tomorrow is the last stop because it was annoying before but now my whole body is hurting (I have a fever) from it plus I can't heal a thing.
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Thanks to those who responded to my questions on what to expect from Herceptin treatment only! Tomorrow is my first treatment on it's own and somewhat anxious to see what the se's are without the chemo! Did get my 2nd echo done last week and it showed my heart had not changed at all since starting this regiment. Life still evolves around a three week schedule but at least I should not feeling as bad now that chemo is done. Herceptin until next July, exchange surgery at the end of the month and hopefully 2010 will become a little more "normal" in routine and the old life. Oncologist should be putting me on Tamoxifen tomorrow also and not at all excited about that and the hot flashes that I hear that are associated with it, let alone 5 years of this stuff! Ugh!!
Jaimieh: Sorry to hear of your implant problems, hopefully you will get rid of this infection and be able to move on with your plans for surgery in January.
CaliforniaCloud: Have not experienced the growths you mention around your eyes, hope you can find some answers to that one. So sorry to hear about your oncologist, that has to be somewhat discouraging to know he won't be there to for you as you continue to get through this. Hang in there!
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Bluedasher, My info packet for the Neratinib study says "There will be no charge to you for your participation in this study. The study drug, study-related procedures, and study visits will be provided at no charge to you or your insurance company." The coordinator of the clinic told me Wyeth is paying for everything.
Jamieh, As for being eligible for this study if already on the bisphosphanates study, I couldn't find anything written in the packet about it, but the coordinator I spoke to did tell me I couldn't do both. She said I would have to choose between the two of them.
My husband and doctor also are kind of giving me a hard time about wanting to subject myself to a whole other year of another drug. They both seem to be stuck on the statistics that I'm "probably" cured. But to me, statistics are just numbers. If statistics were all they think, I wouldn't be on this board in the first place! I worry so much about the cancer coming back even if I only have a 7-10% chance of it! I'm really trying to make the decision right now of whether to do the bisphosphonate study now while I'm eliligible, or wait for this summer after to Herceptin to try to pursue the Neratnib study (coordinator thinks it will still be recruiting this summer, but of course no guarantees it won't fill up sooner.) I am torn on what to do. Sometimes, a bird in hand is worth 2 in a bush--with Neratnib there is only a 50/50 chance of getting the drug. I just don't know. If you have any info to add to help me make this decision, please do! Which arm of the bisphoshonate study are you on?
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Blessed by: Just one thing to consider re the Herceptin-only - ..my doctor's protocol is to give Benedryl with chemo and also with Herceptin-only. I HATED the benedryl - it left me sleepy and spacey for hours afterwards. Of course with the chemo, I did most of my sleeping in the chemo room, which was fine. But since the H takes only 90 min, I didnt' want to be spaced the rest of the day. Plus I wanted to drive myself back and forth. So the nurses encouraged me to 'decline' the Benedryl which I have done. And it is NO problem at all. I just go in, get the Herceptin, sit around for 90 min, finish up and leave, drive myself back to work and feel clear headed and totally normal the rest of the day. It is WONDERFUL!
The only SE I can identify is that I can smell it leaving my body when I pee, and I really hate the smell. I feel like it comes out of my pores over the next 24 hours. But my DH says no, he doesn't notice anything. But that's a small price to pay for all the good the Herceptin is doing! Even though I do schedule it every 3 weeks, I have had 4 now and each one becomes less and less of an issue. Just a short morning appointment and then I go on with my day. TOTALLY DIFFERENT than chemo!
Good luck tomorrow. Just wanted you to consider the thing with the Benadryl so you could discuss with the nurse before she gives it to you, if you want.Amy
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I am on the clodronate arm of the bis. trial. I really do not have any side effects from the medication. It is more of a pain in the backside because you can not eat for an hour after or 2 hour before and you can not lie down for 30 min. I know it is for safety reasons but what a pain in the backside.
My DH thinks that I am crazy for even looking at the neratnib trial so we can be crazy together
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Amy: Thanks for the advice, I knew I would be getting the Benadryl and was wondering how that would effect me because like what you said with chemo I was their until 4pm and sat around all day and went home. With this they give it to me in 60 minutes and then I will be out and still try to get to work for the afternoon. I will discuss that with them tomorrow and thanks for bringing it to my attention. Hope I have the same good fortune you have had with the se's! I will find out after tomorrow!
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Blessed...I have had no SE's that I notice with the herceptin only. I have had a pain on the inner side of my knee ever since chemo ended and the onc thinks it is inflammation. I too, like Amy, took benadryl (double dose because I was allergic to taxotere) with chemo and had it with my first herceptin only treatment. I insisted that I didn't need it and told my onc. I have not had any problems without it. I will be going in next week for #12. Good luck tomorrow!0
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Sorry I am late here!
On my Neratinib study. Wyeth pays for everything except the mammos. Anything related to breast cancer re-currance is paid for by the study.
Night!!
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I too had no SE from Herceptin it was pretty cut and dry next to chemo its nothing and I had radiation with it also and didn't have any SE with them together. I did swell more my arm from Lymphedema but I have learned allot about living with this and what not to do so its better. Take care.
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Hello to all,
I have not posted much and certainly not recently, but I wanted to mention that Herceptin has certainly caused neuropathy to the legs and feet for me. I now also take Arimidex (for the next five years) and have terrible joint weakness. If I go to lift a full cup of tea off the table I have to concentrate to lift it up. I get out of breath climbing stairs for a few days after each Herceptin treatment. Because of all the problems I cannot even ride my horse currently as I am not strong enough with my legs.
A day after the most recent Herceptin I got a new visitor - a Urinary Tract Infection. It was a really bad one and lasted for about three days. I researched that and found that it is a fairly common SE from Herceptin.
I also continue to have problems with the digestive tract (caused by TC moreso than Herceptin). I saw a surgeon last month and will soon schedule an appointment for gall bladder surgery. He told me that 40% of chemo patients wind up having gall bladder or related problems. My oncologist never mentioned that. I have lost 17 pounds because of gall bladder attacks since chemo ended.
The good news though - I have an inch of hair which I have bleached white blond. I use my son's gel to spike it on top.
The new study does sound interesting, but I won't finish Herceptin til next March. Thank you to all of you considering undertaking the study to help us all.
Hope everyone has a great November and is enjoying the extra hour.
Linda
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Blessedby4, I never had Benedryl for my Herceptin. I didn't have it for chemo either though I can understand having it if you show signs of an allergic reaction to Taxotere.
Weety, I don't think that 7-10% represents our chance of recurrence. We both had node negative cancers less than 1 cm. In BCIRG 006, 7% of node negative women had recurrences in 4 years (the time when most HER2+ cancers recur), but they had bigger tumors than us. I expect that means our chance of recurrence is lower - perhaps 5%. An additional treatment like the bisphosphonate or Neratinib might reduce that but not eliminate it. They hope bisphosphonates will cut down recurrence by about a third - that might buy us a percent or so in reduced recurrence.
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vangophpro - Please talk to you doc about a referral for physical therapy. Herceptin has given me nueropathy in the hands and feet also, but certainly nothing bad enough to keep me off my horse. If you are experiencing that much muscle weakness in your legs, you could really benefit from physical therapy or working with a trainer at your local gym. I am so sorry your s/e's have been so harsh. Take care and God Bless. Lisa
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Vangophpro, I also think physical therapy needs to happen. Even if it is the drug you can't let you muscles atrophy. If you don't use them you lose them. Even pros will say they lost muscle tone from lack of exercise. I know it is hard because I deal with it all the time. You have to push yourself to get muscles back.My fibromyalgia hurts so much and if I would give in to it I could be bedfast but I refuse to let that happen. it is a fight as much as cancer is a fight.
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Vangohpro: I am sooo sorry that you have such extreme weakness. I can relate even though mine has never been as bad. I started a walking program. (been hard to stick to) It has helped me. I use small weights and do some reps as I have the weights where I could trip on them to remind me. It is helping a little too. I still have weakness and fatigue but only have 3 more Hercptins left. WHO HOO. Then I hope to truly detox and recover fully.
Jeimieh: Damn can a girl catch a break. I am thinking about you and praying that you resolve this infection quickly.
My heals are cracking thats new and just wonderful (not)! I am going to moisturize and put those cute little socks on. It actually hurts to walk on my right on. GRRRRR.
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Bold. right around my next to the last herceptin, I experienced horrible cracked heels and finger tips. I had to keep moleskin on my feet. It lasted about a month. Sorry.
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Yikees!!! Thanks for the tip Lisa. By feet crack me up! Get it?
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