Taxotere, Carboplatin and Herceptin
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I have been reading all of the posts since 2008 when I was diagnosed for the second time. All of you helped me get through surgery, taxotere, carboplatin and herceptin. I chose to have the other breast done on July 1 as a preventive measure. Unfortunately, as my cancer is very rare and fast growing, I had a reoccurance for the third time. Had a complet axillary disection last Thursday and am facing chemo again. Good news, only 8 nodes and all are clear. After 8 years, still fighting-we will win. I really feel that all of you are my sisters; you cannot know how much you have helped me
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(((((((((((((Sheila)))))))))))) Warm thoughts and prayers going out to you. I had my first dx in 2001, and my second in 2009. I don't know if I can have your wonderful attitude if I have a third! This thread may have "helped" you, but you are an inspiration to us! You will win and we are here to support you!
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Shelia, It is good to hear from you again but so sorry it is because of more cancer. You have been so helpful to all of us and I know you will fight this like the trooper you are. I hate the thought of chemo again. do you know what you will be taking?
Everyone is in my thoughts and prayers. I hope this next week is a good one for everyone.
Carolyn
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Oh Shelia!!! bI am so sorry that this is still apart of your life. This will be the last time and you will kick it to the curb. My thoughts and prayers are with you!! ((((((((((HUG)))))))))))
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Sheila, I'm sorry that you have to go through this again.
All - here is the latest stunt that my breast has pulled - almost one year after the end of Herceptin:Monday last week, while out of town, I got a really high fever -running between 102.7 and 103.7 while on Tylenol. (I'm suppose to avoid Ibuprophen and aspirin because my creatinine has been elevated since treatment.) The next day the fever was down, but my breast (the side that had cancer) was red, painful and swollen. I found a doctor, who said it was mastitis and prescribed antibiotics.
Once the swelling went down, I noticed that there was a dent in the side of my breast (not in the area where the lump was removed) and my breast is noticeably smaller than it was. It is still slightly pink and painful. The size to the side of the dent seems to fluctuate and it feels funny - kind of like a water balloon.
Almost all the information I've been able to find on mastitis is about mastitis while breast feeding and when I search on mastitis and breast cancer, just stuff on distinguishing mastitis and IBC comes up. Almost two years ago when I was diagnosed, there was a benign cyst next to the cancer lump. Perhaps this was another cyst that burst?
Oddly, I by posting on "Going Through Treatment" I found two other women who are going through mastitis after breast cancer even though I couldn't find any older posts on it.
You know that I'm not normally a worrier. I was calm all through BC discovery and treatment, but this seems so off the beaten track. I have an appointment to see someone Wednesday.
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So, did well at the surgeon's today; the drains removed hurt like hell. Going to the oncologist on Wednesday. I am really advocating for one more round of chemo. Bluedasher-I am praying for you. I feel really fortunate to have at least some good news. I pray for all of my sisters every day. All of you have been a rock for me (even though I never post). We will win this battle-after all, we really do not have time for this interruption of our lives.
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((((((((((((((Bluedasher)))))))))) hang in there.. Did you have lymphedema in that breast? Try searching for lymphedema and mastitis. When do you go back to the dr? Prayers here for ya....
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Gin, I haven't had lymphedema of the breast. At one point, I had very very slight lymphedema in my hand and lower arm - not much swelling but a bit of tenderness. Doing the exercises got rid of that and it hasn't come back - that was months ago when I spent 3 days in Sante Fe (high altitude so the low external pressure may have helped bring it on).
My breast seems kind of shrunken on one side, not swollen but there seems to be some fluid there also. That's why I think it may have been a cyst or abscess that broke and now it is cycling between filling and draining. It is pretty weird and I wish I could see the doctor or nurse practitioner right now. It is hard to wait another day to when I have an appointment with the np. I also wonder if I should have taken the appointment with my surgeon that was Thursday instead of seeing the NP tomorrow but I didn't want to wait that long.
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Bluedasher, I know what you mean about waiting. I have had an abscess or an infection where they did a biopsy. My orig. surgeon has moved and I do not like the new one but that is beside the point. he told me it was hard for a radiated area to heal but it healed on the outside I guess and was infected inside from April until the middle of June when it blew up or out rather. It is indented now and is still draining some but not like it was. I took 3 different kinds of antibiotics so I think it is on the mend but I want my onc to look at it and I have an appointment the 29th. I wish I had gone to see him right away but I figured he would send me to the surgeon. the surgeon wanted me to see my PC because he was going to be gone but I did not because he did not do this to me and I know him well enough to know he would want me to go where it was done. A long story a little shorter, I still don't know what was the best thing to do. I have a lump and I believe it is from the infection but it has not gone away yet. I told the woman who did my mammogram and so they said it looked like a shadow not cancer. I want to have my onc to look at this report. It is hard to wait. I am like you about the NP but sometimes they are just as informed but hopefully if it is something the surgeon needs to see the NP will be smart enough to have the surgeon check out. Hurry up and wait! hard to deal with. I am thinking about you and I hope you get some good news. let us know!
Carolyn
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So sorry to hear you've been having problems, Bluedasher. Hope you get good news today. Please let us know--lots of people sending good thoughts your way!
Becky
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I'm starting this regimen (TCH) in two weeks - August 2. Nervous, nervous, nervous.
I like coming to this site for the support, but sometimes reading people's experiences makes me more scared! Anyone else feel this way?
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Lisa - I was scared also when starting TCH, but after the 1st round or two you get to know how your body will react. ((Hugs)) to you. You may be fortunate and have minimal side effects.
I finished my 6th TCH on July 5th - am so glad that leg of this journey is done! (will be continuing with herceptin of course). I will be moving on to rads on Aug 2nd. Mind you, they did the simulation last week and I just got a call today that they need to redo it. Any idea's why?
Have some lymphedema in my arm and have been graded as a stage 1. My sleeve and gauntlet have been custom ordered and am hoping it will be in this Friday.
I'm not looking forward to rads - would've been nicer if we lived closer but we don't so I'll be staying in the city. But, I get to come home every weekend so that will make it more doable.
I have an Onc appt. this Friday and am supposed to start Tamoxifen. I sure wish I've read more positive things about that med! Eek! This will be my last Onc appt. for 3 months, I believe. Can't help but worry about the high receptor status. However, onward we go!
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Lisa
You are going to be just fine. Pretty much anything that you encounter someone here will have probably been through & will have tips & tricks to manage it. This thread was a TRUE LIFESAVER when I did my TCH last year. Note that while many SE's are mentioned along the way, you definitely WILL NOT have all of them. As the comment above mine says, you will figure out how this affects your body and learn to handle it as you go. By the time we are done, we are experts! But due to the wonder-working properties of Herceptin, we are not going to have to do this again! Once is enough!!!
Do you have a port yet? That makes the infusions much easier. I slept through almost the entire infusion due to the benadryl they gave me at the beginning. The five hours (or so) FLEW by as I dozed. My husband would drive me and stay through the pre-drugs and the first few min of the first bag of chemo (taxotere) and once it was all going smoothly, he would leave and I would text him when I was almost done. There was no sense for anyone to sit with me - I was SLEEPING the whole time. After the TCH was done and it was H-only, I declined the benadryl so I could drive myself back & forth. That was a huge treat!
Stay close to us as you go. Let us know what you notice & you will get lots of support & feedback and help. You are not alone in this, and for me - that made all the difference. I hope for you it will as well.
Peace to you
Amy
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Lisa, I think we have all been scared at first. I know I felt like I was walking around in a fog most of the time before we started the chemo. I just did not know what was going to happen even though I had been to chemo class and read this board and everything else I could I just finally got too much info and when I got 1 or 2 tx under my belt I knew exactly what everyone was telling me. I had a rough time but my friend who was going the same time I was had a completely different experience. She gained weight and I lost weight. she was always hungry and I could barely eat so you see we are all different. You will do fine but ask questions when you need to. come here for support.
Carolyn
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Lisa, that is why you have us, so you don't have to be so scared of the unknown!
IsThisForReal I took Tamoxifen for 5 years after my 1st dx in 2001. Wasn't that bad. Guess anyone can have a hard time with any drug, but most of do ok, so don't worry too much, ok?
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Bluedasher
At your suggestion, I am new to this forum. You and I have the same ER/PR neg, Her2+ status and are on TCH, the C being Cytoxan. I just finished my 2nd round 1 week ago. 2 more to go. And Herceptin through June of 2011.
I had hoped that when it was over it would be behind me. And then I read your recent posts here.
Am now waiting to hear what the NP said at your appointment today. Fingers crossed.
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Hi all! I have the same status too. I am doing great lot of energy now and this whole scary mess is getting further and further behind me. I pray it stays that way. I had a much larger tumor 3.3 cm soooooo,,,,,,,,,,,,,,,, we got nothing but hope and so many sisters who are alive and well years and years and years.
Blue I am so bummed for you. I have a dent when I move a certain way. I mean they took out the size of a tennis ball for pity sake. But.........................
I just wanted to say that I did not opt for a port and have never regretted it. On the contrary I never had any flushing or pain or discomfort. When I left there I was done. Tats just how I rolled but it seems that most gals get one. Just sayin.........
I am so sorry that you have to go through this. It just sucks and it plays with your mind something fierce. Like am I going to live to..................... But you will live and you will be strong and admired for your grace and strength. Changed yes but not all for the bad something will be ever sweeter. Friends Loves music flowers TASTE LIFE all become better. But now you must believe that you are going to be alright and just put your head up and do this stupid thing!! It is now one in eight woman. Can you believe it. We are warriors we are strong we are not alone we can do it.
(((((((((((((((((hugs)))))))))))))))))))))
Rita
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lisasinglem - I am also starting TCH in August, actually I started herceptin last week but will be adding on the TC next month. Anyway, I have also been reading through this thread and feeling nervous! But at the same time it is helping to demystify the process and I feel better that at least I know what to expect. It is also helping me think of questions to ask my onc before the chemo gets started.
Bold - I just wanted to thank you for sharing that you did not get a port. I am reluctant to get one and my onc even said I don't need to get one now and I can get one later on in the process if I choose to. I also talked to the chemo nurse about it last week when I had my first herceptin and she said that my veins looked good and I may be able to make it the whole way through without a port. Reading all of the pro-port posts on here was making me feel like I had to do it and it is good to hear that it is possible to do it without a port. Personally I don't mind the needle sticks that much, the idea of another surgery and pain sounds much worse to me than the IV sticks!
Also I want to say thank you to all of the women posting on this thread. I have still not read all of it but it is helping me to be less scared of the unknown. I have been making notes of everyone's helpful tips for dealing with side effects and I feel like I am going into TCH being as prepared as I can be.
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Welcome to all the newbies (sorry you find yourself here) and hello to all the chemo pros.
JSW, a year is a long time to be getting needle sticks and I hate them so I got a port. Surgery to implant or remove one is no big deal. It's an outpatient procedure. I was having dinner at the Olive Garden within an hour of having mine inserted.
Blue, sorry for you news. Hope it all works out well.
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Hi Bon! Sorry you have to go through this but welcome to our little group. The feedback here really helped me get through.
I don't want to be over dramatic about my current issue. It kind of threw me having something happen with my breast almost 2 years later. However, I'm getting more and more convinced that this is just a temporary infection. I had an ultrasound this morning and the radiologist said that there wasn't even an abscess; that mastitis often takes a few weeks to clear up and heal. I'm seeing my surgeon tomorrow just to cover all the bases.
Being stage I and getting Herceptin should mean a very low chance of recurrence.
Other than this recent mastitis bump in the road, it has been very much behind me.
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Blue...Glad to hear that your situation is 'temporary'. Seems like everything is worrisome once you've had a BC dx. I hope your surgeon corroborates your thoughts on this one.
I still need to get through the chemo and then the radiation. I have to stop freaking myself out about what might come along. Today I'll be Doris Day and sing Que Sear Sera...
And ports...well, I was too busy worrying about chemo to even ask what the procedure was for a port, how it was inserted and how it worked. And it was a shocker that the darn thing hurt so much...and still does on occasion. But it's better than ruining the one good vein I have. I'm so glad I have it because I see what others without one go through.
On the lookout here for a tropical depression, perhaps to become a tropical storm. Lots of rain expected and not too much wind. It's summertime in Florida...let the games begin!
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Bon- This is the first time I have heard anyone say the "C" in TCH for them was Cytoxan. Mine was Carboplatin. I just assumed it always was? The Herceptin web site says Carbo/Taxotere and Herceptin are the TCH protocol so now I am confused. Maybe ther eare just different ways of doing things. Any thoughts Ladies?0
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Perhaps I get Cytoxan vs Carboplatin because I'm ER and PR negative with Her2+.
There are loads of others in different forums receiving Cytoxan, Herceptin and Taxotere, too.
I'm just going with the flow...When I asked about other regimens and combinations I'd heard about, my onc told me I could try whatever combination I wanted, but only AFTER I did this one. So I'm being compliant.
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The most common combination for TCH is Taxotere, Carboplatin and Herceptin. That is what was tested in the main trial for the therapy, BCIRG 006. My understanding is that those who designed the therapy felt that there was a particularly strong synergistic effect of Carboplatin and Herceptin from in vitro tests. But there have been some on this thread who had Cytoxan instead of Carboplatin for the "C" in TCH.
I think that Carboplatin has worse side effects than Cytoxin. Some of my worst side effects seemed to come from Carboplatin and my oncologist reduced the dose after a few cycles. Perhaps since you are stage I like me, your oncologist felt that Cytoxin was a better choice because a small advantage in effectiveness wasn't worth the extra side effects from Carboplatin. They are even testing using just Taxotere and Herceptin without any "C" for stage I.
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Carboplatin vs Cytoxin is not a big deal. I was on Carboplatin and had some bad effects from it. My onc wanted to change me to Cytoxin because he said it would be easier on me but I had read a bunch of stuff and was afraid to change to the Cytoxin since I had already started the other. anyway I was worried about nothing, so I say that to say this. don't worry about taking a different med if your onc tells you he thinks it would be better for you. I have an auto immune disease and my onc said that was why it hit me so hard. Another woman I go to church with had the Cytoxin and some other kind plus taxotere.Some take Taxol and I thought it was the same as Taxotere but some say it is not. My paper work say it is but then that is all I know. If you have faith in your onc try not to worry and if you have questions ask them to the onc. he/she should be able to explain it to you.
I am so sorry anyone has to go through this but since you are I am glad you found this site. Great people to support you and they know what you are going through. they have been there or are there right now. Hold on tight and fight because it is no walk in the park but you can do it because so many before you have done it and are back to their lives again and starting a new normal. You will too. I also want to say DRINK PLENTY OF WATER TO FLUSH YOUR SYSTEM. IT IS SO IMPORTANT! don't mean to yell but I really feel strong about this! Keep children away from the toilet you use while you are taking treatments if you can and if you can't flush twice after using it. it is a poison but it is needed to kill the cancer. this is doable. It really is!
Carolyn
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Bon -- on the port. It will hurt for a couple of months. Especially if you have started chemo. It takes longer to heal once you start chemo, so it hurts longer. Mine is finally flatter and less noticable - but I am thin on top (wish it worked that way all the way down), so to me it feels like it sticks out. I am glad I had the port. Makes it easier to get up and move around and much easier to change out the different bags. That said -- if you have good veins and don't mind the sticks, go for it!
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Hi ladies I am in need of some help. I posted this question on the boards but thought I would post it her as well since you all have done TCH.
I have already done 6 rounds of TCH which ended 5/13 and then just had a BMX with reconstruction on 7/12. Got path report back and i still had a lump remaining that was 5cm. My initial MRI showed a few lumps plus several satellite areas all of which totaled 9cm. I have had a SNB done(4 nodes total taken out) and then another 3 nodes taken during BMX. All nodes came back negaitve even though 2 MRI's showed there was suspicion of node involvement. Onc told me today that based on size of remaining lump that rads is a necessity but he also said that he thinks I should go with another 4 rounds of AC. He said the TCH did kill some of the cancer cells but that given the size of the tumor at surgery he is still concerned that there may be a cancer cell or two that snuck out of my breast tissue and could potentially be floating somewhere in my body. He said there isn't any evidence to show that this has occured but he wants to be very aggressive. He said there might not be any cancer in me right now but he doesn't want to take a chance. He also said that if I just do rads I have a 30% chance of the cancer coming back and if I do the AC this will bring my percentage down to 21% reoccurrance.
Needless to say I am freaking out. i thought I would be done after surgery and although I didn't want to, i know that I can get through the rads. However I am not sure if I can go another 4 rounds of chemo esp without there being any strong evidence that there is still cancer in my body or that by doing AC that it will ensure that it doesn't return.
Has anyone done both types of treatment back to back? And if so, was it because of node involvement? I am feeling overwhelmed with this decision and don't want to make the wrong one. I have 3 young kids(8,6, & 21 months) and they have already watched me go through so much but at the same time I don't want to not fight with all that I have(which doesn't feel like much these days) in order to hopefully live for many,many more years.HELP!!!!!
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Young mom of 3...wow...my hat is off to you after everything you've been through. I know that right now all you want to get back to is "normal". This situation sounds to me like a second opinion may be what you ought to consider. Best of luck to you!
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youngmomof 3. First of all. I am so sorry that you are having to deal with this. Just when you thought you would be done, you hear this. i can only begin to imagine how dissappointing this must be for you.
I agree with Koryn regarding the 2nd opinion for both chemo and rads. I was borderline for rads and got a 2nd opinion and was so glad that I did. I ended up doing the rads, but that 2nd opinion doc was fantastic and I ended up going with him. I know you didn't want to have to do rads, but fwiw, if you do, rads were a more of a time inconvience than anything else. Just had my last one yesterday!!
I too have young kids, so I understand how you feel about the kids. So hard.
Take Care,
Verene
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I agree on the second opinion. I would hit it with everything!!!! Now is the time to be aggressive!!! Rads are not that bad. I had no real problems other than tires and a little sore. I am so sorry. This is all so scary. But get into another real good onc for second asap. Were here and a lot of others have gone through this and made it just fine. It sucks but kill them all no recurrence!!! Thats the goal.
My thoughts and prayers are with you and all of us.
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