Chemo June 2010
Comments
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To whomever mentioned the different treatments we are all planning, that really shocked me too. I was given so many options to choose from without any clear information on why one might be preferable to another. It really seemed to be a matter of physician preference in many cases. Which, I know, is based on their years of experience, but when they each had years of experience and still had differing opinions it made things very confusing
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Danielas, my plan is for TAC every 3 weeks x 6 treatments. First treatment June 8th
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wow this list is growing.....Hi all! I don't know why our treatments are so similar. I live in New York. It seems that these treatments are not tailor made for us and our individual size, cells, nodes, oncotypes etc. When I was offered a choice between the A/C and the T/C., I said to the Oncologist, "Are you kidding me, how am I supposed to know what to do, I didn't go to medical school!!!" She wanted ME to go home and do the research. I was upset at first, did my homework and then spoke to the nurse practitioner's and the surgeon. The decisions came and I'm sort of relieved that we are getting close to the same treatments. I'm glad I'll be able to commiserate with you gals. On a side note......I just got my hair cut very short in preparation for the inevitable.....and splurged and bought myself a buff
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Mel: My surgeon conferred with my oncologist and decided to go ahead and put my port in when he did my re-excision so that I wouldn't have to be put under a third time. I don't really notice that it's there unless I move my arm in an extreme move to th left or up high over my head.
I am really behind on the chemo terminology and abbreviations. Guess I need to study this weekend.
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Hi all you Canadian ladies wondering about your identical chemo regimens. I just found a great site called cancer math. I'm sorry I don't have the exact link. Just google "cancer math". When there, you can put in every specific thing about your own cancer (your age, estrogen pos, etc...) Then you can plug in the different adjuvant therapies (specific chemo regimens, whether you will do hormone therapy etc....). It will give you the statistical projected outcome based on the different choices. I plugged in every different chemo to see which gave the best outcome. It helped me clarify things for my particular situation. Give a shout if you can't find the site and I'll post the specifics.
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Hi RS711 - I had the BRCA test and it was a breeze. You swish mouthwash around in your mouth and spit it into a container that gets sent off. Luckily mine came back negative. The test was not a big deal, it is always waiting for the results that gets me. I'm glad that I did it because it allowed the other females in my family to know if my bc was genetic or not.
MUGA is a type of heart scan. Herceptin can damage the heart (can cause congestive heart failure in some), so they do a preliminary scan and then scan throughout treatment to be sure that everything is alright.
Good luck to all of you as you begin your regimen, and thanks to all of you for being willing to share your journeys with the rest of us!!
And just so you all know, other board members have said that the port is uncomfortable but it gets better in a few weeks, so keep the faith.
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Hi Melanie!
The genetic counselor told me that my BRCA test would be a blood draw that they could do before one of my chemo infusions using the same IV. I am definitely going to ask about the mouth swish. Thanks.
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All of you new chemo girls, Did you get any kind of "orientation" meetings about what to expect when you start chemo? I met with my Oncologist last Thursday. She scheduled a PET scan or next Monday, then I start chemo on Friday, June 11. I thought there would be some kind of preparation, talk about what to expect Don't they have to do bloodwork? I feel like I am just going to show up and then be off and running. Is this weird?
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Hi DesignerMom,
Thank you foe the website, cancer math, I found it very useful and it helped me to feel more at ease with my treatment, it has the best outcome for my kind of cancer. My orientation meeting was just to explain about the different meds, the side effects, and ways to deal with them, no blood work.
I had the muga and the bone scans and still waiting for the CT. I also feel a bit weird just going like that to my first chemo, especially that its starts at 3pm, .
This week is wig hunting wig...not looking forward to do this part at all but I was told to do it before i start losing my hair so they can see how my hair looks,
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I start chemo today (I'm having a bit of a sleepless night). I see that the subject of ports, clinical trials, chemo orientation and other things have come up. I can comment on these topics but have more questions, too.
I will be doing six rounds of Taxotere and Cytoxin (TC) as part of an Avastin clinical study by U.S. Oncology and Genentech comparing the use of Avastin with TC with patients who receive just TC or undergo TAC (Taxotere-Adriamycin-Cytoxin). Qualifying participants are early stage "triple negatives" (ER-/PR-/HER2-) with high grade tumors who cannot benefit from Tamoxifen or Herceptin. I was randomized into the TC group. I don't mind being the lab rat because I still get the standard chemo treatment I would have received but for entering the study. But if it turns out Avastin ends up being super effective in preventing recurrence and its because I ended up getting a recurrence because I didn't randomize into the Avastin group, I'll be bummed. But maybe the Avastin will be available not only for myself in the future if my cancer comes back but for the next generation of BC survivors. It's in Stage III trial testing. All in all, I feel like I'm doing some good for the world.
My oncologist recommended the port, and I had it put into my right arm, opposite of the affected breast. It bruised up some the few days after it was inserted, but it went away in about a week. All I have left is some discoloration over the port entry. I can't tell if the spot is actually the titanium color of it showing through my skin or an ongoing bruise from it knocking against my purse. I find its presence annoying, but my doc and other survivors say I'll be happy in the long run that I had it put in.
My oncologist is associated with a large cancer center in Denver, and they offered a "chemo teach" session at which a nurse spent a couple hours with me explaining the different drugs that could be used for chemo (including the nasty Adriamycin, which patients apparently call the "Red Devil" -- glad I didn't get randomized into the TAC group!), their side affects and how to minimize them with other prescription drugs, diet and exercise. She even explained the effects of marijuana, which is available by prescription in Colorado. According to the nurse, it's quite effective at reducing nausea, anxiety and loss of appetite. I also got a tour of the infusion lounge, which helped me visualize what the experience actually looks like and calm a few fears about it.
I still have plenty of questions, which I hope will be answered in a few hours. I'm curious if there are any other triple negatives in this forum. If so, what kind of chemo are you getting? What seems to be the standard?
Good luck to all of you! I just discovered this website and find it comforting to know that others are feeling some of the same things I'm feeling. I also have started a blog about my experiences thus far: http://web.me.com/hollihartman/Hollis_Breast_Cancer_Site/Welcome.html.
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Designermom--I had an orientation session. They insist on it where I live. To be honest, though, it was too generic to be really useful (not like Holli's). I've learned more on these loops than I did in the session. But I felt a bit the same way about details, so I called my onc's nurse. She told me that the blood work I had done 3 weeks ago would be used for the pre-chemo counts. After that, I'll need testing before each session.
To MelMel10 and HolliColorado: Good luck with your first treatments today! We'll be thinking of you!
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Thanks for the feedback. I'm calling my Oncologist today and will ask if there is not some orientation. I'm thinking I need some anti nausea meds at least. If there are any prescriptions, I would certainly prefer to be ready.I'm still wondering why I'm not getting a port (not that anyone WANTS one). Especially since I had my nodes removed from the other arm, I sure would hate it if they screwed up my good arm veins!
HolliColorado-love that red hair! I know there is a long thread that is still active for triple negatives. If you go to "active topics" and scroll down it is entitled Triple Negative. I think it is on the 2nd page. I'll be thinking about all you pioneers starting your treatments today.
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Designermom, Thank you too for the cancer math website. I found it helpful and interesting. It is reassuring to see the stats on the treatment that was choosen for us.
Hugs and best wishes, Mimi9186
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Hi DesignerMom, you didn't get any anti nausea meds? I was asked to bring to each treatment THREE different kinds of nausea meds: Ondansetron, Emend and Dexamethashone and will be taking them before and after the treatment, I heard that they really reduce the SE's.
Good luck MelMel10 and HolliColorado!! will be thinking about you.
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cattatplay- I had the same annoyance with my port. They told me that it can be installed and accessed immediately, but with all the soreness, no way I'd want them sticking it. It's been about a week now and it's MUCH better. Hang in there.
designermom- The port thing may depend on how many treatments you are receiving... I was told that they COULD use the veins in my arm... but because I have a long schedule and lots of IVs to set up, it would be much more comfortable for me to have an easy access.
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mtf2518: AC 4x T 4x then rads; not sure how many rads
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Hi all, I am starting my chemo tomorrow, June 2. I am in a clinical trial so my stats are as follows: Doxorubicin plus cyclophosphamide plus either placebo or bevacizumab every 14 days for four cycles, then paclitaxel once every seven days for twelve cycles and either placebo or bevacizumab every 21 days for four cycles and if i am in the correct arm of the clinical trial i will go on to receive the bevacizumab every 21 days for ten cycles. I am kind of hoping to be done before that!! Good luck to all and I will keep everyone posted as to side effects, etc.
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Jenni, Good luck tomorrow. I will be thinking about you and sending good thoughts and prayers your way.
Blessings, Mimi
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Thanks, everyone, for the well wishes! I'm sitting in the infusion lounge right now with my feet up in the recliner. The first drip of the Taxotere just came down.
I'm very happy right now to have the port. It's slick. They gave me a numbing cream to put on it an hour before coming in, so I didn't feel a thing. They used it for drawing blood, so I'll only have one needle stick for the entire day. Once the needle is into the port, they just screw a line into the coupler. I may need to learn to carry my purse on the other arm when I'm out and about to keep the irritation of the port site to a minimum.
@DesignerMom: I was trying out wigs and decided I liked the crazy ones the best. I call this one my Raggedy Ann.
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Hi HolliColorado, I'm amazed that you are writting while getting chemo, love it!! didn't think that it could be possible, for sure I'm taking my laptop with me now!
You are provably done or almost done by now, looking forward to hear how the rest went.
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Hello everyone already on this thread!! This is my 1st hit and I've already been surprised at so many differences in our treatments, etc. However, one commonality is that we have BC....which, I call "the beast'.
Danielaes, I sent u a private message, but just in case you didn't receive it I would like to be included as one of the 'newbies' for June '10.
I've had 3 surgeries in past 4 weeks in preparation for chemo to begin, which will likely be within the next couple off weeks. I have PET scan tomorrow & echogram next Monday, since I had heart attack 2 years ago. I'll be on dose-dense AC T cocktail with 6 radiation rounds thereafter. The A is that red devil that can cause heart failure, among other things for heart patients. Wouldn't matter in the bigger picture, we're all getting pumped with poison and every bit of it has numerous SE's that will scare everything out of us, except the beast!!
Was dx w/ Metaplastic Carcinoma (rare type); Triple Negative; Stage II; Grade 3; 3+ cm, nodes clear; BRAC 1+; BRAC 2+; HER 2-.
Am 58 year old divorced mom of 2 grown daughters & I have 3 fantastic grandsons, ages 7, 6, & 4. Work for a state public university.
No way would I even try to address everyone's comments up to this point....but, i hope we'll all become great long-distance pals, even tho this beastly circumstance is what joins us together.
From HolliColorado's last post, it looks like she might be getting that stuff running thru her veins right now. Will look forward to hearing what you can tell us later. For those who've already started treatment, I'll read the posts this evening and try to catch up with status of everyone.
Look forward to chatting w/all of you. And, I don't typically write an enclopedia's worth of 'stuff' like i apparently did in this post.!!
Hope everyone has great evening. !! SMILE, SMILE, SMILE----ha! someone may have to remind me to do that after my 1st chemo treatment!
Deb
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Good Luck tomorrow Algreach. I hope we both have an uneventful poisoning haha!! Sorry gotta try to laugh right. But anyway hopefully we sail through it with little to no side effects!!!!
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Hello Ladies,
Add me to the list as well. I will starting T/C x 4 beginning June 3rd. I think I have everything ready to go but I am anxious like everyone else. Good luck and minimal s/e for everyone.
Gail
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Hi, danielaes, and everyone else. I'm starting TCHx6 on June 3 with Herceptin only after that for a year plus radiation after TCH. Does that make sense? I'm having my port put in tomorrow, June 2, and at the recommendation of my oncologist I have an appointment with a new internist tomorrow afternoon since I don't have one. I'm sure glad I'm on short-term disability from work because with all these appointments I just don't have time for work!
I'm so glad I found this site. I've been reading the TCH thread for the last couple of weeks (I'm only up to page 77 of 244) and it has saved my sanity.
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Okay. After WAY too much research, and being totally paranoid about Taxotere, I asked my Oncologist if there might be another regimen that would have equal benefit for my cancer and fewer SE. A new BC friend of mine talked to a very good Oncologist friend of hers and he said CMF would be comparable to TC for her. Who knew we could ask for alternatives!!!! My Oncologist said she always used the "newest" like TC, but would not have a problem using the "older" CMF on me. I know it will mean 6 infusions instead of 4. I sure do HATE all these decisions! I am so afraid of the permanent SE from Taxotere that so many of the girls are experiencing. As long as I can feel sure the CMF is comparable, I will opt for that. It means I need to get a port, so I'm sure I will be here whining about that soon! Stay strong everyone!
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Hey tbyrd, I will be getting a port soon. I just read a very interesting post recommending to ask for a vertical incision. That way the bra strap, tank top etc hides the scar. I don't know if this matters to you, but at this point I don't need any more scars pointing out my illness. If you type in the search box "vertical port incision" you will find it. Good luck!
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Good luck to you tomorrow, too, Jenni!! I hope your day goes smoothly, and your infusion (doesn't that make it sound like a concoction from Booster Juice?) is quick and uneventful. We can certainly keep our fingers crossed for no SEs. Couldn't hurt, LOL.
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Can any of you point me in the right direction to start researching chemo? My first appointment with oncologist is one week from today - June 8.
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Hey DesignerMom, thanks! I was planning to ask my breast surgeon to give me a cute little scar anyway so I'll be sure to suggest the vertical scar. That sounds excellent!
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Hi Sherry9316, That's a BIG research topic. For me, I went to my first Oncology appointment armed with a notebook and pen. There is SO much info during that first appointment. So much depends on your own exact cancer. Things I wish I had asked but didn't:
-in addition to your first choice of chemo, are there different regimens that would be comparable?
-do you have a chemo orientation so I will know what to prepare for?
- will I need to get a port? How is that done?
-what side effects? What permanent side effects have been reported. Even if they are rare, it is important to know.
Once you get some possibilities, you will be able to research better. I couldn't research because I didn't know the particular chemo regimens which would be right for me until I met the Oncologist. Don't hesitate to say "could you repeat that, I want to write that down". Good luck tomorrow.
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