Stage 2 Sisters Club
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Once you have a game plan things get easier....because then you just do it and get it done!!!
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Welcome Siren! Loved what you wrote about not being ready to "go anywhere just yet so let the games begin." In months from now, you are going to see how this kind of thinking got you through some hard spots in treatments. I agree with Ruth that once your start active treatment, things get a lot easier and less scary. In the meantime, we are here for you. We have a collective wealth of knowledge, experience, and hugs to share with you. Are you going to send for Oncotype?
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Siren, Welcome to the group. I had 2.2mm in my sentinel node, so I am having chemo. If you end up in chemoland, you will get through it and come out the other side. I have my final infusion next week. If I can do it, I know you can, too. Having your OncotypeDx number might help you make your decision.
Poppy
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thank you all for your kind words. They are very much needed right now! My MO said if the final HER2 is negative then we could do an ocotype, but it honestly doesn't matter to me. I already told him I want the chemo. I just don't want to be siting here a few years from now with a recurrence kicking myself for not doing everything. I'm glad they are presenting me to the tumor board though. It'll be nice to have a plan that was decided on by a group of experts. No matter what I know I'm in good hands. It's so hard to believe right now, but I have faith this will be ok.
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Siren, I'm sorry you find yourself joining us.
I'm glad to know your case is being presented to the tumor board - I think it's important to have several sets of eyes and minds considering a situation like yours. I think that in your situation I'd push for the Oncotype regardless of HER2 status just for the info that it can provide, but that's just me. I'm an information addict.
Good luck. Check back in whenever you need a shoulder to cry on, or to vent or to share news and examine options. We truly are here for each other.
Poppy - can't believe you're approaching your final infusion. Three cheers! How is it going? I know it's different for everyone but it helps to know each other's experiences. I'm still hoping to avoid chemo myself, but if I do have to do it, will be doing the same regime as you.
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Hopeful, Chemo has been an interesting journey. It is NOT like it is in the movies (vomiting, losing weight and so on). Most people's side effects (mine included) are well managed. Fatigue, hair loss, change in appetite and sense of taste are the most common side effects. Many continue to work through chemo. If you end up needing the Cytoxan/Taxotere protocol, great info and great support can be found on the following forum:
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Thanks, Poppy. It sounds as though it's been survivable for you - not pleasant but not wretched?
I've promised myself I won't look at any of those potentially useful threads until I know if I will need the info. I'm a bit superstitious about it.
I could face the prospect more easily if it weren't for hair loss - which is HUGE for me, really a horrible thought, as well as the possibility of long-term side effects. I already have some nerve damage in my hands and vision issues, so any more nerve damage could be very problematical.
I know everyone says 'it's just hair' but a) I'm blessed with great hair and am loathe to lose it and b) I've know people whose hair never really grew back. I also have family who have permanent nerve damage from chemo so I'm all too aware that not all SE are transient, much as the MOs like to reassure us.
Oh well - I will cross that bridge when I come to it but I really hope to avoid it. I'm sorry that you couldn't but hope that every minute of it is of great benefit to you, Poppy. Thanks again for your input; it really is valuable.
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thanks Hopeful! I really wanted the oncotype too but my MO said it wasn't developed for HER2+ tumors so the results might not be accurate. The tumor board agreed that I should be considered positive. There have been 4 tests run and 3 were equivocal with one being barely positive (cutoff 2.0 and my tumor was exactly 2.0). So it's definitely chemo and herceprin for me. They thankfully all feel I will do very well. Small tumor with clean margins and high ER/PR+ (95%). Chemo, rads, and hormones for 10 years. I guess I'm "lucky" that I can get so many treatments.
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I am glad that is figured out and you can get started and get it over with!
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Siren - you now have a defined path to follow. No more guessing or speculating, yea! Hope every step is as easy as possible.
Hopeful - it isn't "just hair," it is a constant reminder of pain and loss. I wore a beautiful wig for a whole year until June 2014, and now love having hair again - but it came back quite curly and a darker colour. I'm starting to see my old hair coming back. I kept telling myself that was the price to get as healthy as possible.
Everyone - I am thankful for each of you and this forum. For being such a safe and loving place for all. Safe travels for those going on the road next week and Happy Thanksgiving Day for all !
Hugs, Nisa
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Hair is important. I got a beautiful wig that I could actually swim and sleep in if I wanted to (it was very expensive, but I didn't care). The plus was that my 'hair' always looked great and nobody knew I had lost it unless I told them (in fact, that summer I got together with an old friend who knew I had done chemo, but whom I hadn't seen since the whole thing started, and as we were talking she said,. "At least you didn't lost your hair.") All that being said, I was really, really glad when I could ditch the wig and go with my very short (and surprisingly cute) 'real' hair, and I came out with a whole new hairstyle and color that I would have never even though of otherwise.
Hope everyone is staying warm in this crazy weather!
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Hi everyone. ... I start chemo December 16 for Stage2 HER2/ positive 3+ breast cancer. Can I join the club ? I sure could use a pep talk today. Yesterday I was told the medicine that is going to be used , Adriamycin and then cyclophosphamide. Has anyone else been on this treatment plan. I get my lymph nodes checked and a port/cath Dec 8 . Today has been a very down day ...
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I did the AC part. Not fun, but I worked full time through it. I took Fridays off for infusions & was back to work on Monday. I never got really sick, but felt creepy and like I had a mild case of the flu the whole time. The 'good' thing is that chemo works the very best on fast growing (grade 3) cells, so it should do it's job for you. Most people do really well with the Herceptin. In fact, a teacher friend of mine took her foreign language students for two weeks between her last two infusions! Hang in there, the part where you are just waiting for things to happen is the worst part of all!
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just met with MO. plan is to have port placed 12/2 and first chemo 12/4. Four rounds AC every other week followed by 12 weekly rounds of Taxol. Herceptin starts with Taxol. I'm still trying to wrap my head around this but I'm ready to start so I can finish.
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Siren, I'm sorry you landed in chemoland. You will love having a port. It makes the process so much easier... and faster, too! Check out the topics in the Chemotherapy Before, During and After. Since you start chemo 12/4, I recommend you join the starting chemo in November topic so you can talk to the ladies who are further along in their treatment. If there is a chemo in December topic, join it... or start one.
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I did a/c every three weeks on Weds, then worked thur/fri, but was worthless over the weekend. That is when I just had no energy all of a sudden. It so much depends on how often your treatments are and the dose.
I am done with chemo! They pulled the plug, so to speak, this week. Only had three t/h left, but my neuropathy is too bad. I only did the Herceptin. I go in Dec for the rad consult. How long usually before the chemo effects wear off? I know the neuropathy will be slow, but what about everything tasting weird and all? BTW, my hair has been trying to grow back since stopped a/c. I think if not for the taxol I would have more than I do.
Siren, I don't love my port, but am so glad I have had it for chemo.
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Ruth, what you described with the AC is exactly how my MO said I would feel. Hopefully it goes well. I just really don't want my kids to see me struggle. He also told me taxol would be easier and he would closely monitor signs of neuropathy.
Poppy, thanks for the great idea. I started a group this morning!
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How old are your kids, Siren?
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just turned 10 and 8. I'm 40....this was found on my very first mammogram. No palpable lump at all.
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The good thing about kids is that they are very self-centered; if you handle it in a matter-of-fact way, they will too. Some things that might be helpful: if you have friends who would be willing to bring dinner a couple times a week and/or do some of the shopping, cleaning....whatever....take them up on it. Save your energy for the things that are important (like kid time). If you find you feel really crappy the first couple days after chemo, see if your friend's kids could invite your kids over for playdates, sleepovers etc. and/or have your husband do some fun father/kid stuff with them. Plan quiet things you can do together; watch movies (with the lights out, so you can doze off without being caught!), easy art projects, even watching them play video or computer games. It is not a situation any one of us wants to put our kids through, but it can be a valuable lesson for them on how to handle hard things (which life eventually brings to all) with grace under pressure.
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Siren - same happend for me 1st mammo @ 40. My kids were a little older so hard for me to comment. But Ruth, as always, has great advice. There is a great support system here - all these wonderful ladies have a wealth of information to share. Hugs to you!
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thanks for the advice, Ruth! I know some people don't agree with me but I've told them I had an injury and the doctor removed it. But it was infected so now I need some really strong medicine to make it better. They're ok with that explanation. When they are older I will explain in depth what happened. I just want to maintain normalcy so they aren't scared.
Mrs., I'm glad to hear I'm not the only one. I figured I was being a responsible girl getting my mammogram. Not a second thought to it. Then I left with a cancer diagnosis. Like a punch to the gut!
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Liwi, I am also a lobular. I am interested that you started chemo before surgery. Did they give you a choice on that? I did my surgery first, was never offered the other way. I have always wondered if chemo first would have gotten rid of the cancer in my nodes. I am not regretting, but I am interested. How are you doing on the AC? Keep drinking tons of water and try to exercise when you can. I walked 3 miles a day after I felt better between infusions. Exercise is really important on the taxol because it really gave me some joint pain. Please keep in tough with your progress. This whole thing sucks, but you will find this site to be your lifeline. It was and still is for me.
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Happy Thanksgiving!! Hope you all are surrounded by family & friends today!
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You, too, mjsgumbas. Thank you.0
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My belated wishes for a Happy Thanksgiving Day and weekend to everyone! And special thanks for our Mods who work hard behind the scenes so that we can forge friendships and bonds that sustain us through active treatments and beyond. Hugs, Nis
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Smrivr - the doctors gave me a choice to do chemo or surgery first but my surgeon and oncologist both strongly recommended the chemo first option to shrink the tumor prior to surgery. I had not heard of Neoadjuvant treatment so I had a lot of questions. Also it was contrary to my first reaction, which was to cut the tumor out as fast as possible. But once I thought about it I liked the idea of being able to see if the chemotherapy is working and I'm hoping it will result in less surgery with my nodes.
I am doing okay with the AC and finished my third treatment so only one more to go. I'm with you on the exercise benefits. Most days I walk between 1 and 2 miles and working my way up to three. It helps me mentally as well as physically. Sounds like it will be even more important when I move to Taxol at the end of the month. Let me know if you have any other suggestions or information to share about what may be different with Taxol. I already have osteoarthritis and have had some neuropathy in the past so I'm a little bit nervous about it.
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Hey all, been bouncing around the threads. My Taxol has been stopped due to my neuropathy. Next step is see radiology to find out if am doing that. Fun. My hair is trying to grow back. Not happy I don't see much on top yet. Crikey
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Missing - I am sorry that happened to you. It happened to me too. It took a couple of months before I could walk without pain. Now a year later, all is well. The good advice from Ruth about exercise helped, but was not easy initially. I wish you a quick recovery from neuropathy and that whaever chemo you got so far was enough to compelte the job. Your stats don't show if you had nodes removed, did you?
Liwi - sounds like you are doing great. All that walking sounds great. I don't see the nodes on your stats but you mentioned them.
I don't know how surgery of nodes work after chemo... Is it still a step in the plan?I am prepping for my next revision surgery. Will be getting new implants but a bit smaller. And there will be additional surgery to keep them in place... They are now great in almost every way but a bit too close together. So new boobs on the way!
Hugs, Nisa
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Missing-sorry to hear about your neuropathy.Again, found another pea size lump, not movable and hard. This time is on my right neck. Had ultrasound done last week. My PCP office called me with the results saying that the ultrasound shown as unspecified lump and not a cyst either and its not in my lymph node. My PCP is sending me to see a surgeon next week on Dec 10. It seems like every month there is always something pop up....sigh.....
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