TRIPLE POSITIVE GROUP
Comments
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lago - excellent - that can be my new hobby - I will do the research of reading all your posts...
shore - that is awesome...hopefully you will be able to keep it up once you return to work.
Speaking of work, I still don't know what I want to be when I grow up...after surgery and recovery this fall, I am going to need to make some decisions. I really do not want to go back to teaching. I had just started to get back into long term subbing to try and get into the school systems but it was because I felt like I HAD to because of my degree, not because I wanted to. Teaching was never a calling for me, it was a job. If I just want something to do, I could always work a few hours in the retail sector but that would be simply something to do to get out of the house. Thinking of checking into taking a few classes or something online but I don't even know where to start to find a reputable program.
But for today, I think I will have some cereal and watch Dance Moms.
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I want a copy of your book, Lago!!!
Re: use it or lose it....Lago is right! It does happen, but CAN be restored. Pre BC, over the last years since natural menopause at 50....our sex life has slowed down a lot! ...but I've always noticed that the more often we "do it" the more I feel like I want it. Yes, I did get very dry after menopause, but there are great lubricants to help with that. After my MX......we went through a long sexless period, I attributed to my deformity (hubby is a boob man) and when we began to try it out I was very self conscious and noted he went out of his way not to touch my scarred "plain". I've always had difficulty expressing to my DH verbally what I want sexually, but over the years he's learned by osmosis (not recommended). I have to admit that one "silver lining" of this BC...is that I no longer am shy to talk to him directly. As Lago said, communication is the key. I finally talked to him about feeling he didn't want to touch me there....and how I want to be touched. I found a post about "karazza" sex which takes the pressure off "getting to orgasm" and we've started playing together again :-)
It's still not as often as I'd like...sometimes it's his libido too! But it's getting better and we're having more fun with it. .....think I'll invest it a good vibrator though, too! :-)0 -
Thank you Nora - I sent you 2 back. Really appreciate it.
Lago -- you're right, staying committed to positive changes we made after treatment is key. Ill figure out a way to stick with it, in spite of work and my kids' crazy schedules.
Kltb -- I like your attitude! I blew off laundry, paper work, house stuff and have been at beach all day. Dance Moms & cereal is a great day! I spent entire days watching sex & the city seasons this year, where pre-BC I never would have done that. Im all about doing what I want to do these days.0 -
So back in June 22nd I asked some of you ladies about taking Herceptin with chemo because my regime had me taking H once I completed my chemo. So I asked my Doc, and after 5 weeks and another chemo date (my 3rd of 4) without H, they got back to me and said Yes you should have had the Herceptin with chemo !!!!! Sorry about that, someone made a mistake. Un friggin real. I know we need to be informed but at the start of this journey a person is so over whelmed and you trust the people that are looking after you. Now the debate is some of the "panel" want me to start over with the chemo and H(total of 8 chemos) and/or give me another 2 extra chemo with H so I would have 3 chemos without and 3 with H. I don't think I can handle and extra 2 chemos. I even got a copy of a memo that says " no big deal not getting the H with chemo and no malpratice was done by my orginal ong who has his licence pulled for malpratice from another case he was invovled in. What a emotional ride . Thankfully I am not under very much stress all ready.
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wasgij96....unfrigginbelieveable! It's a good thing you spoke up but the ONC REALLY dropped the ball in your case!
Please keep us informed in what they are going to do as far as the timing of the chemo and herceptin. I was so happy when I had that number 6 under my belt. That would've been just devastating.
Hang in there girl, big hugs
Nora
XXXXXXXXXXXX
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Wasgij, that's horrible. But, if you can stand it, you might consider the extra two chemo as the least of bad options. That really sucks. You made it this far, I don't think starting over is an option I would do, and not doing anything would leave me always wondering. But, that's just me. Much love and good luck on making a decisuon.
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wasgij96 I bet doing 3 chemos with Herceptin and finishing up the year with Herceptin will be just fine. They just don't know for sure because they haven't tested it. Yes Herceptin seems to work better with chemo but some women who do AC-T only get the Herceptin during T. I think that makes you really just 1 shy chemo with H. And remember just because you are HER2+ doesn't mean you will get mets without it. Being node negative gives you better odds. Also a tumor under 5cm is also working for you. Hang in there. (Guess no BJs for your DH tonight)
kltb04 I'm not that funny. Don't think those posts would be as entertaining the 2nd time around.
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i'm leaning towards just doing one more chemo with the Herceptine as the chemo really wears me out big time. What do you girls think ? Should I do three more chemo with the H or just the one (having 4 more with H is a for sure no way!!!). I know at the end it will be my choice but i also trust your girls judgement more then my so called "team" of experts. You girls were the ones that got me thinking about the herceptine in the first place so THANKS for giving me the info.
Any stats/information out there that you could suggest for some light reading on chemo then herceptine verses chemo with herceptine would be very helpful.
No BJ for sure as I am in the mood to bite and chew
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Wasqij96 I did 6 rounds of chemo with Herceptin. Remember you can always quit. I wonder why you were only scheduled for 4 rounds? I had Carboplatin not Cytoxin.
OK I'm off to my ACS volunteer meeting for the strides against breast cancer event. Be back later.
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wasgij96 - unbelievable that it happened like that! Like lago said, I am only doing 4 w/chemo - I did 4 A/C and then started Herceptin with my Taxotere so I will do 4 that are T/H. I think it is your decision but I lean toward doing as much as possible if you think you can do it...let us know what you decide.
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Wasgij, I had 4 AC and started herceptin with the taxol, weekly x 12. When taxol ended, the herceptin became every 3 weeks. Starting over doesn't seem realistic. Can you get another MO opinion? I would wonder if more chemo than the usual course would cause other lasting SE's. Good luck & let us know how it works out for you.
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Lago
I was wondering why she had cytoxin as well instead of carboplatin. Seems like the standard of care for all of us triple positive women who are stage 1-3.
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I had Cytoxin with my Adriamyacin. I really didn't know much about anything so I just went with what my MO said. After all my scans/staging/SNB (1 of 4 nodes positive), she said A/C x 4 and T/H x 4 and Herceptin for a year.
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I don't know......I do know things change all the time. As I said I am just now starting to delve into my own diagnosis. Hence the change in my signature line. Weird that I didn't know know this stuff till now, or I didn't listen. Dont know whi ch it was
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I started out being super into researching everything - I had what I called my "book of knowledge" where I would gather all my reports, drug info, etc...then I got to the point where I just got too overwhelmed and said that at this point I would just go with what my MO recommended. Now I am gearing up for the surgery aspect of it and feel like I am back at square one having to try and make decisions, etc...ugh...
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I know of women on this site that have had 4 rounds of taxotere/Cytoxin that were stage IIA but they were not HER2+. Thee are a few HER2+ that did get Cytoxin. I'm not an oncologist so just because I've observed this doesn't mean you are not getting the correct treatment. It just seems like more women that are stage II-III get Carboplatin/Taxotoere 6tx or AC-T as well as Herceptin for a year.
I'm pretty sure that Carboplatin/Taxotere/Herceptin was the one that was compared to AC-TH. That doesn't mean that there haven't been new studies with Cytoxin but I am not familiar with then. Just more questions to ask your onc about.
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wasgij96 - Pretty amazing. Good thing you caught it. Now, I only had 4 chemo txs....TCH but because I had heart problems, I only had Herceptin with 2 of the 4 and then 8 more after completing chemo and radiation. Had to stop due to the EF drop so hard to say. Are you able to get a second opinion?
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Hi all! So sorry to hear about that wasgij96. I had Adriamycin/Cytoxan x1.5 without Herceptin, then was switched to Taxotere/Carboplatin/Herceptin x1 then H alone weekly x 11 before I could no longer tolerate that. There was a 2 mo gap between the 8th and 12th Herceptin. We'll see if it was enough. If I were in your shoes, I'd do the 2 more tx's with H. I can feel for where you are, but it does end. It seemed to drag on last year though! Wish you the best, which ever way you choose. I kind of felt that I wanted to say 'I did all I could'.
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wasgij96: Your on the same chemo that I had, and you've had 3 rounds. I was getting H once every 3 wks w/chemo. Just tell them to start the H on round 4 (last round of chemo), then they can just give you H, weekly; bi-weekly; or once every 3 weeks, to catch you up, but if they told you 4 rounds of chemo, than that's all they get! H works on the Her2 issue (over-expression of human epidermal growth hormone), not targeting the actual cancer. It just stops the receptors from wanting to multiply, and if there's a cancer cell there as well, it will multiply along with every other cell! H stops or slows down those receptors. Do not let "them" convince you into more chemo! Herceptin is a targeted therapy. Stand your ground, and do your research and homework. I did not let them dictate to me, I had all the information before I ever let them touch me!
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I'd be very wary of doing more chemo than is "standard". You would be putting yourself up for increased likelihood of long term serious side effects I would think (actually I k ow you would).
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I think I'm just going to do the one more chemo with herceptine. I am going to a different city to get a second opinion and they will have to convince me to do any more then that. http://soc.li/uDWiGbb if you want to read about my onc . I think he meant well in this case but not sure why he went off the beaten trail with me.
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Wasgj96
My mom lives in Washington and was telling me about this! It made the Seattle news.0 -
wasgij96 I think the 2nd opinion is best. While some of the ladies here only did 4 rounds their tumor was smaller (Stage I) than yours (Stagge II) and yes that can make a difference but I'm not sure where the cut off is. Staging is one of the tools used to decide what you will get and how many rounds. The most "extra" chemo I would consider would be 2 more additional rounds. Then you would be getting the same as many other stage II & III. You'd be doing chemo with 3 rounds of Herceptin.0
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I agree on getting a second opinion. I'm so sorry you are going through this!
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lago - thanks for that link - very educational and helpful!!!
Question for you all...how long did it take for your counts to come back to normal after TCH? I'm 4 weeks post. My white count remains low (in the 2's with 4 being low end of normal, ANC around 1700). In fact, it dropped a full point from day 21 to day 28. I don't understand why it went lower...thought it should be starting to recover. Doc did not have a good explanation for me. Just said it happens sometimes, and it takes time. I still have thrush, doc gave me IV diflucan yesterday...starting to improve finally. Just want to be OVER the chemo sx! I know, I know, I'm impatient.
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wasgij - wow, I am so sorry and p*ssed off about what has happened to you. I agree with Lago's last post - if I had a larger tumor I would have done the full 6 rounds...this way you'd be getting Herceptin with 3 of your chemo rounds, and wouldn't be getting any more chemo than is standardly recommended. 6 rounds of TCH is what the clinical trials were done with (as well as the AC-TH regimen).
Regarding Cytoxan, I've seen a few TCH gals get it instead of Carbo, but the majority and the clinical trials were done with carboplatin as the "c". My understanding is that for those who did AC-TH, the "C" is Cytoxan.
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DanceT I had a blood test ordered by my PC last August (because of a rash on my legs). (Finished chemo the January prior but still on Herceptin). My PC said my white counts were a little low but that's to be expected because of treatment. Not sure if it's because I was still doing Herceptin or it just takes that long for this crap to get out of our systems. I know I broke out with a cold in late August & October… and I rarely get colds let alone 2 in 3 months. Haven't had a cold since though.0
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I may not be remembering correctly but I think Blair's wife and the ladygrey both had TCHx4, with their C being Cytoxan - it seems that for smaller size tumors I have seen the 4 treatments instead of 6 with Cytoxan instead.
dance - it took my counts 6 months to return to normal. They steadily climbed back, as long as they are coming up instead of down it is probably ok. If they start to trend down - that is another issue.
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Thanks SpecialK and Lago - I figured it would take a while for them to come up...but as you said SpecialK - trending down is the big concern...sooooo....the next few bloodworks I am going to be on pins and needles. Those whites need to stabilize at least!
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dance - how frequently are you having a CBC? Are you continuing to eat enough protein? - won't help the WBC - just avoid too many crowds and keep hand-washing, but will help the RBC and hemoglobin, important to try to keep getting enough while you are in the recovery phase. Also, exercise (even if only walking) so you can get more oxygen.
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