Taxotere, Carboplatin and Herceptin
Comments
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Writer:
Hi, I started tch on nov 24th and through it all the worse it the fatigue which hit me about day 3/4 after tx. It put me out for 2 days and slowly you get back. Also diarrhea is a biggie and drink water water water! I am doing 6 rounds and 1 year of herceptin. If you dont mind me asking why is your onc doing chemo and rad if your node negative?
Be strong, you'll get through it with support from this site and love ones...Saty positive although at times its hard!
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I am so confused on how radiation gets determined. I have alwys understood that if you have a lumpectomy, you will have rads. But i had a double masectomy and i had 3 nodes posiitive but my onc (one of the top onc docs in the country) told me i do nt need rads. He said the magic number is 4 positive nodes to have rads. But i see so many on here who have rads with no positive nodes. I guess it must just be preference of the doctor? I am learning that like snowflakes, no one cancer case is the same! But it always has me second guessing myself and my doctors!
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Maura I know what you mean about no responses, I get that feeling also, mostly I post what I feel or what I want to say or my good advice 
I was 3 pages behind again I try to read every day if I can It is overwhelming all the posts, I love that so many have found this to come to I know all you beautiful ladies helped me so much!!! duneoaks Congrats To you My Dear!!How awesome!!! Lisa1964 You Housekeeper Is The Bomb How great of her to say that to you !! We all need to hear things like that.Bold I wish I looked as gorgeous as you WOW!! I believe sometimes that you are my soul sister I love what you say!!! You crack me up!! You are so kind&sensitive you always know what to say to everyone, most times I feel like you take the words right out of my mouth.Everyone QUESTION When will I ever have decent nails???? I am 8 months post chemo, 1 month post Herceptin only, Actually 1 year ago Today was my 1st chemo!! My hair is doing great except the slow bang growth I hate ,hate hate that!! Newbies Keep Drinking Water IT IS SO IMPORTANT Keep putting 1 foot in front of the other As you all know from us that have gone before This To Shall Pass, We all did it You can too!!! Denali Where are you my dear????? Anyone know ???? 0 -
Writer, I agree with the whole marijuana input. I think you will find that you don't really need it. TCH was no walk in the park, but really, it was doable. Nausea wasn't a big problem, the anti-nausea meds they gave me worked well. I didn't need any help eating--I just didn't always eat as many healthy foods as usual (ie veggies etc) because they just weren't appealing. I ate more "comfort" foods such as soups and pastas. Also, the side effects of the treatments were kind of more cumulative for me, so by the time I started feeling more run down, I found I only had 2 more treatments left. Doable, yes, but I never want to go through it again!
TrishK, I have questions about this whole radiation topic as well. I am a "no-noder" and my onc told me I did not fit the criteria for radiation but had me see a radiation onc for a consultation yesterday just to be sure. To my surprise, the rad onc told me that she IS recommending me for radiation. Some of the reasons were small margins for the invasive part (1mm and 3mm) and the fact that I had DCIS present in the margins. But she said that my age (39) is what really pulls me out of the gray area for her (she said a lot of oncs would not necessarily give me the radiation because technically my margins were clear and the DCIS is not always treated with rads) I am sooo depressed about this because I thought I was DONE!!!! I shouldn't be upset about it because it just means being extra cautious, but I really don't want to do it! And here I was thinking I was wasting my time going to the appointment!
For all you other ladies who had rads after chemo, what happens to the herceptin while you are on rads? Do you continue it as usual or do you postpone till rads are done?
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Thanks Weety! I really do not get it. Did you have a lumpectomy? i had DCIS all over my right brest and in two spots was a small amount of invasive cancer. but my margians were clear and i went even further with electing do do both sides just to be sure. Im sorry that you have to do them now. Noting worse than finding out you are not done yet. But as you can tell everyone says rads are much easier than chemo. but it is still something that just continues this long process.
As far as the people in my office are doing is they are still getting the herceptin while getting radiation. It does not seem like it interferes. Good luck!
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ROCKSTARMOM- nails nails nails! I am only 4 months post and still have herceptin until June and my nails are getting better but still ugly! they still hurt too! i have grooves in them from teh chemo and have to keep dark polish on them to hide the lines. My toes did much better. No real problems there. I just wonder if they will ever look the same again?
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Weety, I have had chemo and rads (have 4 more and i'm finished!). I continue having my herceptin thru rads (my schedule is once every 3 weeks). Rads have been very doable for me--much easier than chemo. Maybe you can ask your radiologist about the protocol where you have 16 regular rads plus 3 boosts (total of 19 rads). That's what i am having and I was so happy to find out it was only 19 total.
BTH, I did not have negative nodes either. If you can look at it this way, at least you will have thrown everything at it and not worry later that maybe you should have thrown everything at it.
Good luck--it will be over before you know it.
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Trish, I had a mastectomy, but because I am very small breasted (not even a full "A" cup sadly) the surgeon took as much tissue as he could, but there wasn't much to take. He said it's like trying to remove a blueberry from a grape, rather than from a watermelon. The margins just aren't there. Nice analogy, huh-- LOL!
Cowgirl, did you have a mastectomy? What reasons did you doc give you?
The reason I ask about the herceptin is because I think my onc wants to put a hold on it during rad treatments and that scares the putooey out of me! Don't ask me how to spell that word! I left the appt with her saying, "If the rads are a go, don't come next week for your herceptin." Why would some onc keep the herceptin going, and another, put it on hold? I hate worrying about every little thing, but that seems like a major difference in treatment.
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Could you all please indulge me for 2 minutes while I brag about my aunt. Connie is technically my aunt but she is only 5 years older than me and most people think we are sisters. Before my little BC problem, we looked like twins. She is the chior director of her church in southern Ohio and this clip is one of the songs from their Christmas special. Connie is the lead singer in this one. Please take a moment to listen. I am so proud. http://www.youtube.com/watch?v=hxSJkyc1GWE
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Lisa - I did not see a link in your post. Please post the link and I will watch it!
Weety - I had herceptin straight through rads. Never heard of anyone stopping for rads. Ask your doctor WHY.
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Trish:
Your diag is very similar to mine...had dcis all over my r/breast and i area of invasive wich measured only 1.8 mm. Even with this my surgeon was surprised with the pos nodes...I had to go back and get an axillary dissection in which she removed another 15 nodes and another one popped up! I also opted for BM and my margins are clear, so I guess it is individual or onc preference. Im seeing my onc tomorrow and i will be asking him to explain it to me further, trust me when i say I dont want any part of rads but do want to make sure everything is being done!
Carolyn: Thankyou for your story and advice...It HELPS!!!
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Trish...I think you know that I had rads with just one positive node and clear margins. The radiologist here wanted me to get a second opinion because he was on the fence about whether I needed it or not. I struggled with the decision to even get a second opinion and decided that it would be worth my while. The rad onc that I went to for the second opinion said that I needed rads for various reasons. Because I am er- pr- and her2+ had alot to do with it, the size of my tumor (3.3 cm) and the size of the positive node (1.4 cm). She felt the benefits outweighed the risks in my case. And the percentage of recurrence dropped quite a bit by doing the rads too. I decided to of course go ahead and do it. Although chemo was harder, I am not gonna lie, rads was horrible for me. I had that uncomfortable expander at the time and they had to radiate me in 5 different spots and it took a good 20 minutes laying there on that table everyday for 6 weeks. (The initial mapping took 2 hours and I had to lay there without moving a muscle.) Then I burned terribly and am still burnt in the middle of my chest 3 months after radiation has ended. I have to keep telling myself that I hit this cancer with every weapon that I could and have no regrets. It will be all worth it if this never comes back. Everyone's case is different. If you have any doubts, you should get a second opinion.
Weety...Yes, you just continue on with the herceptin as usual while doing rads.
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Sorry the link did come up the first time. Here it is.
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Hi gals, I have a couple of general questions. I have not had surgery yet. I had a core biopsy which gave the + IDC right breast and also +auxillary node right side. did bi-lat MRI and they said my breast tumor is 4.8cm and my auxillary node is 6cm. I also had a PET scan and that found a node up by my collar bone + or that showed positive but was mm's not cm's big. I will not have surgery until after chemo. How do you know if nodes are positive if you have had chemo already. I will be having rads after surgery. Then reconstruction.
The surgeon said he wouldnt do surgery first because of the size of my tumor's. But if I am doing a mx why not do surgery first. Oh well. Just am curious!
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Lisa - that was AWESOME. So much energy. I loved it.
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Thanks Amy. Connie is so talented. And she believes what she sings.
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Allison...Is the reason why they want to do chemo first is because they want to shrink the tumors first before surgery?0
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Lisa, what a wonderful clip!
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Lisa....I don't know if it my computer, but I can't get the clip to work.
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Paula~ My nails wehre awesome during chemo and now they are CRAP
but I am still riding the H train you know my onc. is doing 19 total treatments so I have 2 to go 
.Allison~ A lot of times neoadjuvant chemo is used to see how well chemo is working.
2 weeks until surgery. All of my pre-ops where done today which I found out I still have chemo veins
The butterfly infiltrated but they were able to finish getting all the tubes just as the vein decided that was enough. I am now stressing about the rest of the pre-op testing because I need a CT (actually a CTA) prior to surgery. I am just stressed out about it...... I know that I will be in the best hands but still stressful. Okay enough whining...0 -
ccbaby - that is what my surgeon said at first was shrink the tumor but then a week later when he was putting in my port he said due to the severity of the tumor he now thinks mx is best...then why shrink the tumor. I will ask him when I see the surgeon at the end of this month.
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Jaimieh, I know how stressful this can all be but just hang in there and it will get better. I guess not in months but years according to my oncs. I want days!
Lisa,I loved the clip. It came up for me the first time. I think anyone having problems may have to update a adobe flash so you can view it. I know I had to a while back to see something on the Internet. anyway great. I love to sing but I get so winded anymore.
which brings up this subject and I had been told this before. keep a copy of your chemo/rad records for the future. I had tattoos but some have removable ones from rad and if you don't keep your rad records and for some reason you can't get them form the place it was done you can't have rad again. I had never thought about this until a friend's aunt had a reoccurrence and she had no records or tattoos so they could not do anymore rad. she started with lung cancer I think but it is still the same. It does hit your internal organs some no matter what they do to prevent it. I don't mean to scare anyone just remember to keep some records and hope you never have to have them again but you might. I need to listen to my own advice and get mine updated.
have a great day everyone, well as much as possible. I think of all of you.
Carolyn
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Why chemo first? As explained by both my onco and surgeon, doing chemo first allows the docs to follow the chem's progress. If you have removed the tumor first, there is no way to really detect how effective the chemo has been on the tumor (and other areas that may have cancer). My tumor was so large at first exam that they couldn't even measure it accuractly. It shrunk by 1/2 after one TCH treatment! Talk about positive feedback! At the end of 6x tx's a contrast scan showed no signs of cancer in breast(s) or lymphs! Pathology at surgery confirmed. The chemo had done it's job!
Why radiation? I too questioned the need for rads after effective chemo and BM. What's left to radiate? Again, as explained by both me onco and surgeon, the course of my treatment was set at diagnosis based on tumor size, location (margins), skin involvement and node involvement. Once your course is set there is no going back. Even though I had a "cure" with chemo, the remaining surgery and rads were for prevention of recurrence. Peace of mind was a big factor for me therefore I opted for BM (rather than lumpectomy) and then rads.
I won't finish "H" until mid April, but I'll end this race with a 90% chance that this cancer will never come back. Maybe another cancer in a different place (God forbid), but not this one.
A Cautionary Tale: I started rads about 6 weeks after my BM. I was not aware of the possibility of developing a seroma. (Where vacant pockets in the incision area fill up with fluid, cause pain and swelling.) I developed a huge seroma on my right (non cancer) side. It was so big it interferred with the radiation mold causing it not to fit correctly. I had to have it drained several times (300+ccs over the course of 10 days.) They finally decided to put me in a chest compression bandage to prevent the pockets from filling up again and again. I developed another seroma on the left side during the last week of rads. Although I complained, the rad/onco said such pain and swelling was typical during the final days. WRONG!!! I was also running a fever of 102.8. What I had wasn't "typical swelling/pain". I finished rads last Thursday, but a trip to my surgeon Monday and my concerns were confirmed. They drained 100+ccs of fluid from the seroma. The fluid was dark and cloudy and showed signs of infection so I'm now on a course of antibiotics. In effect the last several rad treatments were boiling the fluids in the seroma over and over causing infection and pain and what will undoubtly be a longer healing process. I should have listened to my body. Just question everything that doesn't seem "right". Seromas are not uncommon after any kind of surgery. They need to be watched for and attended to immediately. Draining is simple and non painful and provides almost immediate releif. A little lidocane and needle aspiration does the job. Look for puffy swelling, tenderness and excessive "tightness" along the incision line and axilla (as the scar tissue gets stretched to accomodate the fluid).
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Carolyn you are right I want to feel better NOW but that is not the wqay that your body woirks. One day at a time...
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swampy - thank you for explanation. That totally makes sense. Saw my onc on monday and he said my tumor has shrunk significatnly!!!! Best news I have ever heard and I was 3 weeks out from first TCH.
Sitting at the cancer center now doing my tx #2!
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Allison....>>>Saw my onc on monday and he said my tumor has shrunk significatnly!!!!
So happy you've had such a great response. Not all women can go the adjunctive chemo route, but getting such good news after one treatment gives you so much more reason suffer through the SE's when you know it is WORKING!
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I know you feel better knowing the tumor is going away but I am not sure if I would be able to sleep at night. I had a large tumor but they did the lump. and I also had cancer in lymph nodes so I had 22 removed from under my arm. I sure hope the chemo did the trick on the other cancer that might be lurking in my body. My arm pit is tender still as well as the breast but maybe some day it will not be so bad. I am happy to hear that the tumors shrink before surgery though. My friend's did not go away but did not grow either but she had a mast on one side but now the one in the other side is causing a concern. I wonder why at her age they did not just remove both at the same time. I wonder if it is harder to recover but she did very well with that. She has non Hodgkin's lymphoma and had a lymph node removed from her neck too.
Swampy, I am so sorry you are having such a bad time with rad and the SE. I had a hard time I thought but nothing like you have had. anyway I am certainly glad that is behind me and hope you heal well and get strong fast.
Carolyn
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Hi all, hope you don't mind me jumping on this thread.
I am on another one for Jan 2010 chemo start, but most if not all on that thread are not on my course of treatment. Must be because I am ER-/PR- , HER2+ 3++express. Grade 3, lucky me!
My Dr has me on TCH every 3 wks for 6 cycles.
My first was yesterday 1/13. Waiting for the side effects to start.
I also am doing Chemo first as my mass is 4cm, and was just diagnosed in December. Originally I was told it was "just a cyst", but when it became painful, I new that wasn't right. Just found out today that my sentinel lymph node biopsy came back negative. They pulled two out when the port was installed on 1/7. All my other scans (CT of Brain, abdomen, Bone Scan, EKG, Muga, echocardiogram (on top of cancer I also have a bicuspid aortic value)) all came back clean. Also had to see a cardiologist - and he also gave me the green light to start Chemo - herceptin and all.
Any tips, pointers that anyone wants to share would be greatly appreciated.
I have read back thru most of this post - seems like it has been going for awhile as new people keep joining.
Good luck to everyone
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Stlcardsfan...sounds like you & I are in the same boat. Also diagnosed in Dec(11th to be exact), IDC, Grade 3, Her2+. I met with my oncologist today and will be starting the same exact treatment as you, TCH every 3 weeks for 6 weeks. Had my port put in on tues and am waiting for the results of the sentinal lobe biopsy. Hopefully your side effects will not be too bad as I pray mine won't be either. My onc said the most common were leg aches &pain from Taxotere & also Neulasta and he gave me lot sof anti-nausea meds and also something for anxiety which I think i should have started the day I was diagnosed
. If anyone has taken these meds & knows of some good secret tricks to help ease the side effects please post. Anyway glad to find someone starting the same treatment as me at the same time. best of luck, hang in there and keep posting.Tammy
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Ladies - welcome, although we are all sorry you have to be here. This is a very strong thread - lots of women at various stages of TCH treatment. I came when I was new (almost a year ago - hard to believe!) and it was a LIFESAVER. Ask all your questions and you will get good info.
I only have 4 more Herceptins to go. It felt totally overwhelming in the beginning but I DID IT - and you will too! Stick with us and we will help you through.
In sisterhood and support - Amy
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