TRIPLE POSITIVE GROUP
Comments
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For those of you who finished the lengthier treatments (for TP group), did you all do a PET/CT at some point? My wife finished her NAC 10 days ago and I asked the BS about the scan during today's pre-surgery appointment. He said, no, it would completely waste time and money. Don't you need some test to make sure and claim NED?
Also, for the whole treatment process, chemo (neo-adjuvant or adjuvant), surgery, radiation, targeted therapy or hormonal therapy, which is usually the most difficult one? Can we assume finishing NAC would be near the end of tunnel?
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i had a PET scan right before chemo. Had to fight to get insurance to pay for it; I guess its very expensive. That's the one thing I was not taking "no" for an answer on. I HAD to know whether it had spread.
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LilyCh, I had NAC with TCHP and the Dr's declared NED when I had an mri before my lumpectomy. It showed no cancer but then when I had my lumpectomy the pathology showed cancer present. So I went back later for a BMX and there was no cancer present then. My MO only uses blood tumor markers now that I'm done with treatment. Unless he sees a symptom of mestasis then no scans.
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LTWJ, wow, I thought MRI usually would be more reliable (although it could overestimate sometimes). Per your profile, the time between your first lumpectomy and later mastectomy is only one month and a week, but the former had cancer present and the latter had not? it is hard to imagine, did you have the lumpectomy right after the last TCHP infusion or wait for a couple of weeks?
Thanks very much for sharing your experiences.
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LilyCh, I had my last round of chemo 9/11/17 and lumpectomy a month later. There were no clear margins and cancer was present. I have ILC and many times it does not show up on scans, which I know now but wonder why my MO and Breast surgeon failed to know. I wasn't offered a second lumpectomy which I now see most people have after not clear margins but was told a mastectomy was recommended. We were all shocked when the pathology came back, looks like they got it all during the lumpectomy, just not clear margins.
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LTWJ - I had a lumpectomy with no clear margins. I opted for a mastectomy, but the BS talked me out of it, with words like "same outcome" and "you won't be healthier with mastectomy" and blahblah. I gave in. Dumb me. Second lumpectomy found cells of IDC + DCIS and close margins under 1mm. aaargggh. Now I am sheduled for a double mastectomy after chemo, with different BS (of course). According to my MO this is not neccessary, but she supports me nevertheless.
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LTWJ, thank you! Sounds like ILC made the difference, but how did you find out the tumor in the beginning since MRI is not sensitive to this sub-type?
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Kat22, the scan has to be expensive. MRI before and after NAC showed no suspicious nodes, that might be the reason why BS said so.
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Good luck, Laughing. We’re thinking of you
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Jstarling - I am going to take you up on that tip, we have a Steak and Shake close by. Magari - I am just starting down your road, congratulations to you!! Could I please ask you wonderful ladies, does chemo get worse the more treatments you have? I have had people ask me that, and I don't know, I had my first treatment yesterday. I go and get Neulasta today and have taken Claritin and Aleve this morning. Thank you kindly for all your help. Lisa
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MissouriCatLady: So sorry that you're here, but also welcome. This is a great place for questions, advice, and support. You'll find a lot of comfort here during this difficult time. To answer your question about chemo: from my personal experience, yes, it does get progressively worse with feeling the side effects because the toxicity of the chemo builds up in your system over time. At least, that's how my MO explained it to me. You'll find that each session something new may come up. For example, I got neuropathy and the skin rash caused by Perjeta after session 4. This is why hydration is absolutely key because it's the only thing that helps you overcome those side effects quickly. One thing my MO and I did to combat the side effects around session 4/6 was going in the next day after chemo for fluids. I found this gave me an extra day of feeling normal, and cut my recovery time in half.
Good luck!
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MiCat Lady. It was my experience that chemo side effects became more intense with each treatment, but was usually the same stuff so you knew what you are dealing with and could be ready for it with drugs/Milkshakes heating pad and junk tv. If you need lots of Zofran, Miralax is your friend...Hardest for me was dealing with those five Zerxio shots leaving aches and the issues o nothing tasting appealing.
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Thank you so very much XYoungandScared and Jstarling - I really appreciate your advice. I wondered if that was perhaps the case. I appreciate all the help!! You are so valuable, all you ladies who have been down the road, to those of us who haven't, thank you. I will ask about fluids too, when that time gets here, thank you for that idea! Wishing you the best and hope I can help others down the road too, hugs to you, thank you, Lisa
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Lots of new people, my last post was only nine days ago, but this board moves so fast I can't keep up!
MissouriCatLady - I felt the first infusion was the worst. As chemo went on, I learned how to deal with the side effects better. Of course towards the end the side effects got worse, so I guess it was a U-shaped curve. Like xYoungandScared, I also kept having new side effects come up. Definitely hydrate, and stay ahead of the nausea. Your steroids will start to wear off about a day or two after you stop taking them. At that point I recommend pre-emptively taking your nausea meds whether you think you need them or not, because once you start throwing up it's hard to get the nausea back under control. Try to control the diarrhea too, whether its with immodium, probiotics, yogurt, and/or a high fiber diet. Keeping the GI issues under control will help you maintain good nutrition, which will help your body heal from the hit it takes with each round of chemo.
LaughingGull - thinking of you today. I hope you are healing well from your mastectomy.
I'm still doing rads and will be for a while. I guess it's going fine. I had a rash on my chest when rads started, which is odd for me, and it is still there and looks more red but doesn't hurt. No burns yet, but I'm a lot more tired than I thought I would be. A lot of people have said that they barely felt anything during rads, but I'm getting "comprehensive" radiation, which may be why I'm so exhausted. My husband is coming down to Houston next week and will stay through the weekend, and then I fly home a few days later for Thanksgiving. Once I come back it will be just another week and a half and I'll be done! It doesn't sound so daunting when I break it up like that. I'm really glad I came down here to do rads. Just sitting in the waiting room with a bunch of other semi-bald women who also had crappy-ish responses to chemo and cancer all up in their lymph nodes has been therapeutic. It's like a chemo under-achievers club. My support group at home is basically me, a bunch of ladies who got PCRs, and one lady who was stage IV de novo.
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hapa both times I did rads I got the chest rash. I was told it's where you got sun damage growing up. Yes tanning really does do a long-term number on your skin!
P.S. Just got the results of the echo I had earlier this week. Ejection fraction is exactly what it was before I started tx. :-D
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missouricatlady, this is a great group for us that are +++, you should also check out the Chemo in November 2018 group if you haven’t done so ye. This group are all individuals starting chemo the same month and share and support each other. I am part of the chemo in August group and without them I'm not sure I would have made it as far as I have.
Take care and thinking of you.
https://community.breastcancer.org/forum/69/topics/868019?post_id=5307028
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Just wanted to say a quick THANK YOU for all your support and advice. My best wishes for everyone! Lisa
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Ingerp, my fourth and hopefully last echo was great as well.
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Excellent, Phoenix!! I get them every three months, so I’m guessing two more since I have six more months of Herceptin. Another thing I’ll be happy to have behind me. :-)
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So my mom had a couple of appointments last week (which for the record I do not go to - my dad goes with her. First, she met with the surgical oncologist and went over her MRI. We received good news that both the biopsy and the MRI show that her lymph nodes are clear. Apparently they were enlarged, which is why the doctors first suspected they were involved, but the scans show they are not affected. (She was sick recently so we wonder if that’s why they were enlarged at the time.)So that was great news. She is now Stage 2A instead of Stage 2B - 3. The other good news she got was that the tumor appears to have clear margins. So, if that is the case, more good news.
She also met with her oncologist who she really liked. She will do two sessions of chemotherapy with 4 infusions each, every 3 weeks. The first is AC and the second session will be Herceptin, Perjeta and Taxol.
She will start her first infusion this Friday. I understand that AC can be rough. If anyone can recommend things that would be useful to manage some of the side effects, I would appreciate it. I've already got biotene, Claritin, cooling socks, protein shakes, a journal, and a few other things. I'd also love to know how much water should she be drinking post- chemo session? 100 ounces a day or much more than that?
I also wanted to ask if AC-T is warranted for a Stage 2A tumor. I guess I didn't expect her to be given what I understand to be one of the more potent chemo drugs under the circumstances.
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Hi KBM, yes AC+T is also given to stage 2A. That was the same regime I got too. Sounds like your mum already had her surgery because you mentioned she had clear margins which is a good thing. Sending love and light her way.
Princess
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KBM - I imagine her cancer center has a chemo class that will go over how much water she should be drinking during chemo. It's kind of hard to guess what side effects she'll have. I went through a lot of lotion during chemo because my skin was really dry, especially my hands. They were even dryer than the rest of me because I was constantly washing them because I was constantly peeing because I was constantly drinking water. Dish gloves, if she does the dishes or does any cleaning would be a good thing to have. I also had some cotton gloves and scarves and a big floppy hat that I wore when I went outside for the first week after my infusions because I was really sensitive to sun - I literally got a sunburn in the shade after my first round. You might want to join the monthly chemo thread as well, the women in my thread (March 2018) were my lifeline.
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KBM I got AC-T, with 21mm tumour and micromets in one node (nodes appeared to be clear in all preliminary scans). I think it's pretty common regimen for this stage... and I'm in Europe.
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Thanks for the responses. I forgot that she does have the chemo class this week, so I'm sure all those questions will be answered.
Not questioning the doctors, but I guess I was just surprised at the AC-T regimen. I know there are a few different options so perhaps it has to do with the fact that my mom told her doctor she did not want to be on Taxotere bc of the risk of permanent hair loss.
And, no, she actually hasn't had surgery yet. Either I'm using the wrong terminology or it's simply that her doctor expects she will have clear margins after surgery, based upon what she's seeing in the MRI.
Trying to be positive. The sooner she starts, the sooner she can put this behind her.
Thanks again, and best wishes to everyone this week.
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KBM - Look for the topic Chemotherapy - Before, during and after. It has some great articles and tips that I have found invaluable. Tiffany's Twenty Terrific Tips is very helpful.
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KBM. I too was very worried about taxotere and permanent hair loss but here I am two months post chemo with a bit of hair! It isn’t even measurable but I plan on leaving the wig and hats home Thanksgiving! Wishing your mom the best.
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KBM,
My MO actually prefers the AC + T regimen over the Taxotere + Carbplatin because (in her experience), her patients are more likely to finish the former rather than the latter. I had AC + T, and was happy to only get AC four times. In comparison, the Taxol was easier on me, though it did give me diarrhea (became a huge fan of Imodium). (AC gave me some serious chemo brain.) Best wishes for your mom!
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Is it the norm to only be on Herceptin for a year? I don't think I knew that, I'll be scared if they take me off it.
Also, anybody have hair NOT come back? My first time around my hair all came back in at the same time. This time I've got a good amount of hair coming back in on the sides but the top and back of my head is patchy. I have patches where there is actual hair, and patches that are as smooth as a baby's butt. I'm worried that the baby butt spots aren't ever coming back
Of course the hair on my legs is like a forrest UUGG!
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BigPeaches,
There is a thread in the Stage IV forum about Herceptin and/or Perjeta. Many of those breast cancer patients do receive targeted therapy for more than a year. See:
https://community.breastcancer.org/forum/8/topics/826737?page=69#post_5306080
For those of us who were diagnosed at an earlier stage, we typically get Herceptin for just the year.
Hope this helps!
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Thank you!!
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