Starting Chemo April 2016
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Just had a mammo, and it looks like Lenny hasn't shrunk as much as we had hoped. He's down from 3.7cm x 5.4cm to 3.2cm x 4.9cm. So looks like a lumpectomy is off the table anyway. Now I just want to get him out of me. I feel like a ticking time bomb. Funny, I know. I didn't before.
Karen - thanks for popping in and correcting me!! I hate giving bad information, so I truly appreciate it! Good luck with your last round tomorrow!
Libby - glad you port isn't too bad. I'll make treatment so much easier!
Houston - Happy offing Birthday, eh? Glad you found us, but man, I'm sorry you have to be here. I turn 52 in August, so we're the same age. I'm also on the same chemo regiment. Taxol and Taxotere are actually two different chemos. Most likely your are going to be given Taxol. I have not had any heart symptoms. I got my echocardiogram half way through. I'm done with AC and starting Taxol Thursday.
Twaz - Sorry you have heel pain, too! That sucks!
Wellshoot - Can you take something like Milk Thistle? That's supposed to help liver function, but of course, ask your doctor first. Good luck to you.
7of9 - I hope you feel better for vacation! But sleep does sound amazing.
Annie - I hope my fuzz starts to appear. We'll see - it doesn't happen for everyone. I know Latisse is supposed to help. I'm using Zenlash which is a knock off and I'm not sure it's as good.
4Hymn - you're welcome. I have a ton of them.
Numb - sorry about the computer issues! Glad you're back. Hope it gets better for you. Round 3 sucked for me. Hugs.
Suems - I really wish companies wouldn't do that. Burns my buttons!
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Hi all ladies,
I've been lurking the last couple weeks. It's really hard for me to read the threads on my phone in the 5 or 6 days post-chemo -- it makes me feel sea sick! So I catch up once the fog lifts!
I've joined the bald eagle club -- our firm's accountant said, Well, bald eagles are revered! which I thought was funny. It's really not that bad now that it's happened. The only time I cried over my hair was when my husband buzzed it down and it was SO patchy that I couldn't even look at it because it made me *look sick*, which I don't consider myself. Once it was all shaved off, I gradually got used to it. I'm going the cotton cap/scarf/baseball cap route. So far, it is okay.
To add insult to injury, though, my grandma died suddenly last week. The only thing I can say good about the situation is at least it worked out so the services were on a non-treatment weekend, so I felt pretty much full-level energy and did not have to disrupt my chemo cycle.
Questions about Round 3 AC: I'm gearing up for round 3 of AC on Friday. I'm getting nervous reading all the comments about how it was rough on so many. Has anyone had success keeping round 3 at bay and making it at least no worse than the others?? Any tips appreciated!
Questions about Latisse: Who wrote the Rxs for you? Can your med onc write them? Or do you have to see an ophthalmologist? Also, people in the States, did your insurance cover it? Finally, do you think it would hurt to put some on eyebrows, too? I feel like mine are subtly lightening.
Warm thoughts and prayers to all of you. Thank you for any feedback! Xo!
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Hi All,
Well round 3 has been a really tough one. So much so, they have cancelled my chemo for tomorrow. I've been given a week off.
Kind of disappointed but relieved that my body will get a break.
Hope everyone else is progressing well.
Gracie
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Uhhhhh. I'm on Taxotere, glad that I am cold capping. I've heard about the lawsuit but didn't know the company knew about it...wow. How horrible. I'll ask my MO about it but I doubt he'll be up for changing my regime.
Numb - I'm hoping that your SE's starting in early might be due to your changing in the steroids dosage? So it might be a new game and maybe over soon. We're all pulling for you.
7 of 9 - I'm glad you have a vacation! I hope you recover super fast and relax and have fun.
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I'm declaring myself officially 1/2 way through this chemo regimen of 6 x TCPH, because I'm through the worst SE from round 3. For me, round 2 was the most difficult, because I expected to bounce back more than I did. The Round 1 bounce back was artificially high because I was starting from my best health. The rest of the rounds start from my chemo-recovery which is good, but not great. So with Round 3, I don't expect my taste buds to come back much (though I am VERY grateful for the ability to enjoy chocolate again), and I'm not pushing my body much. I'm just working on getting rest, eating what I can and walks. I'll get back into shape and all when this is over.
I love the new sore-heel SE and will add it to Christine's single-crusty-nostril syndrome, which I currently have.
To those with new ports: some like 'em; some not so much, but you can always bring your complaints here. I like to call it my half-frankenstein, after those knobs he had sticking out of his neck. The important thing is that it works as it should and I hope it does.
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Christine - I'm sorry that Lenny didn't shrink enough and you don't get a choice about your breast. Are they going to remove any lymph nodes? Strangely enough, my mastectomy was the least painful op I've had this year. The lymph node (2 removed) site was very tender and the surgery more complicated, because they inject stuff that illuminates the lymph nodes, but the former breast site was just numb. It was tender around the edges, but didn't give me any trouble if I didn't touch it. Not bad compared to lymph node recovery and port insertion recovery.
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Nwk : Sorry to hear about your grandmother , it never rains but pours . I am using Latisste, my MO gave me a prescription reluctantly, after I pushed and checked it can't harm and she said no but not sure it would work during chemo, she does give it to everyone after chemo. Insurance did not agree to pick up cost so far. I have some thining of lashes and eyerbrows but not too bad, I do put it on the eyebrows but I do know that some times people loose lashes and eyebrows after Chemo so not sure about the final results.
Cj : Its a shame Lenny has not shrunk as much during AC, however I think in some cases the tumor reacts better to Taxol/ Taxane and you would only be able to assess after chemo.
I've seen the side effects of Taxotere law suit online as well says impacts 3-6 % of women but does work well with cold capping. your best ally.
Good luck to all those getting ports - pain will be over soon and this will be
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cj, you're on the same regimen as I am. I still have one more AC round then Taxol. But I don't like what AC affects on my heart. Does your OC did some tests during each follow up? Mine just physically examined me so so far I I don't know how much it shrunk. It appeared to be smaller. Another concern is whether the cancer has chances of spreading when we do neoadjuvant chemo. That thought really scares me.
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just back from my PS. He said everything is healing nicely from the BMX although there is still some swelling on the left side. That should start to resolve soon. He said I'll be able to start chemo in a few weeks. The port surgery is Thursday so I'll be ready to go. I'm thankful that everything is healing and I'm healthy entering this next phase.
NWK - so sorry to hear about your loss - prayers and hugs.
I have also been seeing all the ads for the Taxotere lawsuit. It says 3-6% experience permanent hair loss. Yikes I hope I am not one of them. I haven't talk to my MO about cold capping.
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NWK - my best advice for round 3 is to hydrate. Make sure you drink a lot of fluids. That seems to help.
Gracie - oh man, sorry round 3 was so tough for you. I got me, too.
Houston - I had a mammo after my AC was completed, so that's how I know. The chemo should keep the cancer from spreading, and with IDC it's fairly non-aggressive so we should be fine, but I do get what you are saying.Bagger - Glad you are half way through!! YAY!! Hope you get your taste back again eventually! Oddly, I've been going back and forth on whether or not I wanted a lumpectomy anyway. Surgery is easier, but I honestly don't know if I really want to go through this again. So, in some ways, it's nice to have the decision made for me. Yeah, tumor could shrink on Taxol, but I don't think it will enough to warrant a lumpectomy. I'm just curious to see if this will change my regime, or if we'll just move forward as is.
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Last AC done! So far so good - I got up 4 times to pee last night and didn't even mind. I feel an odd sense of accomplishment that I am drinking alot and flushing it out of my system! My Neulasta time bomb just finished going off so that's done. Just dreading the metallic mouth days I know are coming. I wish I had no taste like I did round 1 than that metallic taste. Found out my Taxol rounds will be longer than the AC rounds were. Apparently just the Taxol is 3 hours plus the pre meds. The nurse said to expect 4-5 hour sessions. Totally thought it would be shorter.
Nwk - sorry about your grandmother. I feel almost guilty for saying my round 3 was no different from the others after hearing about everyone having a rough time. I always eat lightly the first couple of days just to take it easy on my stomach but I don't really do anything special. I I can only say CJ is right with keeping hydrated.
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NJR - yep, I start Taxol at 8AM on Thursday and have been told it's 4 -5 hours, too. Holy crap!
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CJ: Your first Taxol will be given very slowly because you can have a severe reaction. There are also pre-meds. I have had 4 treatments of taxol/herceptin with perjeta every 3rd week. I have no metal taste. Everyone's experience s different. So far, the only thing I am noticing is that I need to watch out with spices. I used to LOVE spicy food and now can barely tolerate a little pepper! I think you will find your taxol way easier than the A/C.
It's interesting. I am doing mine in reverse direction. Which I am grateful for. I am actually having quite a few really good days every week. I get my A/C at the end.
Exercise is turning out to be my golden ticket. I can be having a really crummy day...wanting to not move from the couch but I get up and do it. An hour plus a day. I either hike or ride a stationary bike and I go hard. I ALWAYS feel so much better after exercise.
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CJ: I forgot to add...my taxol only takes 1 hour now (plus premeds).
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Susan BP- - Interesting I am doing the reverse direction as well, Taxotere though instead of Taxol , why did they decide that in your case ? In my case after first chemo (TCHP) they found my tumor was both her2 + and neg so they changed my chemo to THP x4 3 weekly and AC x4.
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Also, one slightly more petty complaint: I am craving sushi so bad. I know it makes no sense on any level to tempt the fates - I mean, no cooking, raw fish, so many ways it could go wrong -- but I miss it so bad, dammit! Thanks for listening!
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Hi Ladies ..
Just finished reading everyones posts I find it so hard to keep up on here and like so many of you round 3 hit me hard the fatigue .. I had 5 days of blah which normally after a few days I bounce back at least some plus my kids were out of school for the summer and so it makes life crazier they started summer session yesterday but only til noon each day so now I have to do all my appts and figure care for them around things.
Tomorrow will be my 4th AC and I will probably start another cycle of iron fusions. I also will be scheduled for something to look at the mass size my oncologist says it feels like it has shrunk I don't feel it as prominent anymore I also have to have a us to look at something on my ovary that showed up during my ct scan so I am assuming they will schedule all that for next week or so that way I can do them and my iron the same days since I drive over an hour to the place where I have my care at.
I am having a double mastectomy because I tested positive for the BRACHA gene and being 42 with small kids I feel its the best decision for me. I will also have a full hysterectomy. I did not want to do addtl surgeries and muscle expanders and all that and honestly I have always wanted to be smaller (I am a c or d now) my plastic surgeon will actually put in a or small b implants during my masc. with a mesh and I wont have to have addtl surgeries if that wasn't an option I am not sure I would do much reconstructive.
I really had a tad of a pity party last cycle which is not me at all but the fatigue started irritating me I hate not being able to keep up with my kids.
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NWK - I can satisify a sushi craving without actually eating raw fish, but that's because I LOVE Japanese food in general. So I'll order Miso Soup, some pot stickers and a California roll as they are not raw. It's not perfect, but it does give me that soy sauce/ Miso soup combination I adore.
CYOSunshine - I'm a C/D cup and I have a big rib cage so I look bigger. I'm actually looking forward to being a B. I don't want a lot up there. I'm active and I so will not miss the bounce. I like that you can get it all done at once - that's cool. I just had a mammo. So I hope you're showing more shrinkage than I am.
Susan - I'd go insane without exercise. Good job on the bike There have been days on AC that I have been hardly able to walk the dogs around the block let alone go hard, but I do feel better if I do the walk. Cardio is good, but weights kill me. I know I'm over the hump when weights feel good. I'm also getting Dose Dense Taxol - so it will be slow and a lot. Fun times.
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PositivePower: I honestly don't know. I am at UCSF with an amazing oncologist that I really love. I trust her. I could ask her.
I think that taxotere is the synthetic form of taxol but I am not sure.
:-)
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Positive Power: I found this: http://www.breastcancer.org/research-news/20080417...
I am early stage with lymph node involvement.
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CJ - you're so smart. I just ordered myself some simple rolls with no raw fish to satisfy the craving. I think I am PMSing (which makes me say yay, because that must mean I'm still humming along in that way), so the need is intense ! Thanks for the advice!
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Susan BP - thanks a lot for the link will ask my onco as well. In my case it may be the change of plan after 1st chemo .
Thanks for the suggestion CJ - Nwk - interestingly the only food I crave is sushi, must be the fact that I can't have it that makes me crave it as well.
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I haven't posted here in a while but regular reader (aka addict) and am on FB group.
Another round 3 victim here. Came good day 8!! Thankfully i didn't have the intense carb cravings I had before. I know I'm gaining weight but if I kept that carb indulgence up I would be in serious trouble. I think R3 was tougher because I wasn't drinking as much water. We had a huge apartment fire nearby that depleted our water reservoir and we were on a boil water advisory. And that, for some reason, translated to me drinking less. Not for lack of water just silliness on my part. I'd go out and think "yes, I can do this" and then nausea and fatigue would hit and nope, back home, disappointed and deflated. Day after day.
I don't have a port and am envious of all who are happy with theirs and grateful when I hear about the complications of others. The IV thing is going well but I'll be on weekly taxol soon and we will see how that goes. I hope all goes well for you Numb.
Has anyone started researching implants? I'm curious about the DIEP where they take fat from your tummy (yes!) and use that for the implant. I poo poohed it right away because I don't won't more scars but it might be a much more natural way to go.
I'm also getting a little "heady" about whether this cancer will rear it's head again down the road. I know, I know, don't think about that. I know it's different for all but I wonder what the rate of reoccurrence is and mestastis. Easy enough to google I guess.
Also wondering if anyone has lost friends during this cancer bs? I know it's ridiculous, but I feel guilty that my cancer is the reason my DH and his life long best bud aren't speaking. He hasn't asked my hubby how I am or how he is since February when I had my mastectomy. And my DH is furious with him. Especially since he's been there for him during his divorce and other life moments. I also just don't feel the same about a close friend that has made no effort to see me since diagnosis! She has apologized but I don't think I can get that friendly feeling back. I'm too disappointed.
Omg, I'm rambling. Hubby is away, kid is in bed sorry y'all too much time on my hands.
I'm so thankful for this group - for the advice, honest feelings and support. 😘
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1uniboob- I'm just responding to the friend thing. That sounds like a hard situation. I've so far only have one friend who completely never followed up to see how I am doing after the initial blast of bad news. It was surprising, but for me, I am refusing to be hurt by it because I truly don't think it's a reflection of whether or not she cares. I think that some people simply don't know what they are supposed to do and it makes them uncomfortable. Yes, sending an email or a card or even a text is easy, but I think that some people truly don't understand how it can be helpful and instead feel helpless so do nothing. I have friends who when they do see me are afraid to ask how I'm doing until I bring it up. I am trying to be compassionate about how I take things like that because I think it just reflects a natural fear of the unknown.
Obviously, it could just be that your DH's best friend is self-absorbed, but maybe he is just freaked out and doesn't know when or how it's OK to ask. Some men especially think if something doesn't come up then it's all fine! I don't know the players but I hope your friendships can be mended!
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1uniboob1 - I think Nwk is right - some people just don't know how to respond but that doesn't make it any less painful. My relationship with my mom has always been strained and since my diagnosis I think it's hard for her to know what to say or do. When I ask her to do something for me she has all these reasons why she can't but then will ask what can she do. I am learning to make peace with that - it's hard but I'm thankful I have other friends and family and my husband that are being very supportive. That's what I choosing to focus my energy on.
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Uni - I'm actually going to ask my surgeon about the DIEP Surgery. Heaven knows I have enough fat to do that! I figure if I'm going to have to recover anyway, adding a tummy tuck in there would be a good thing. I'll have a meeting with him mid- June. I'll let you know how it goes.
As far as the friend thing - I have one who really surprised me. She's been a really close friend and has been with me through MY seperation - always there. But I think she can't really deal with the cancer. She tries - we make plans - but she always cancels. It is what it is, I guess. Once I'm done, she'll be better. I won't cut her off - we all have our quirks and she has done a lot for me and I for her. But it's perplexing.
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Am I the only one eating sushi w raw fish? I live near a Whole Foods and theirs is pretty reputable. My choices are so limited by my taste buds that there's no way I'm giving it up.
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Bagger - I haven't yet, but I've been thinking about it. Especially on a day like today when my white blood cells are high.
Speaking of food - I've noticed that anything that I eat a lot of during the week after chemo, I suddenly cannot stomach again. So, broccoli cheddar soup is off the docket, as is my eggplant parmesan, both of which bum me out.
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CJ-I've noticed the same thing about food and chemo week. I'm making a conscious effort to not eat things I really like during chemo week. It's not really that hard, since everything tastes off (if it tastes at all) anyway.
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nwk/ CJ - your advise is correct, however I am finding it hard to deal wil the one or two who have been indifferent/surprised me. Most of my friends and family have been amazing and I feel closer to them. There are a couple of people who have surprised me. In reality, I find I am deep down very hurt by. I would like to take the position you are taking but I find that while I can do so intellectually, emotionally its harder, if I am completely honest with myself.
I feel after all this I will value those who stood by me and for those who did not I would not want to waste my time investing in such relationships, wish I could take the high road. I generally am more forgiving but I find it harder at this point.
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