TRIPLE POSITIVE GROUP
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Hi Treysrib
Treysrib: I started in anastrozole last week and I have been looking into side effects; nausea is among them but I would get it checked anyway since it started suddenly months into it..
Welcome rosegeranium. Sorry you are here. Side effects will be different depending on the particular regime they put you in. I found chemo was hard but not as hard as I expected -but I am a worrier. You can do this. Are you otherwise in good health? For me light exercise helped a lot while on chemo. Was your surgery pathology report encouraging? No lymph nodes involvement? You can find there clues to prognosis.
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Rosegeranium, good for you to have found this group in the difficult situation.... I'm also new here, currently in chemo. But I can already say the help here is tremendous.
Shelabela! What a beatiful woman you are! The short hair looks great on you, and the rest.... I'm struggling with my English here. Nobody would guess what you've been through!
LaughingGull, I am amazed, you look fabulous in the picture. As somebody said, you look like J. Kennedy. The short hair is very good-looking on you.
SpecialK, thank you for your hair pictures post-chemo. The second picture half a year later - you look so beatiful and relaxed, wow. The hair indeed looks nice, as you said - like intentional style.
Homemadesalsa!! Bravo to your MTB race, that's unbelievable!! I've read about it here and in the exercise thread. What an achievement, what an inspiration. I really feel the urge to start biking again. (My MTB got suspended 2 years ago due to my back+hip problems.) Unfortunatelly I couldn't read the article, it says I'm accessing from Europe therefore I am denied any access due to the (f*#-stupid) GDPR. If you could send me a print-screen (just a jpg), I would very much like to read the article. And thank you too for your beautifull picture, your sporty short hair looks great and very fitting for a MTB-biker.
All in all ladies, I am truly gratefull for your pictures, you have no idea how much those mean to a scared, bald and nauseated girl in the midst of chemo! That's just a figure of speech - of course you know how much it means, you've been there too... Although nobody could guess from any of your pictures. Thank you
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Hi rosegeranium. Welcome to the group as tough as it can be to have to be here. Ask lots of questions and hopefully you will find what you need. As for the treatment locally or at UCSF, that’s a difficult choice. If you have support to drive you back and forth, you might stay with your original team. If you are comfortable, having infusions locally is a good option too. I would also pose that question to your care team as they should have your best interest at heart.
There are monthly chemo group threads that can help you through chemo also. Because of the HP, often the group activity slows down while a triple positive will still be fighting the fight. Meanwhile, we’ll all be here to help if possible. Good luck with your treatment plan and upcoming decisions. Oh and drink water and walk is the best advice I received last year. Hang in there.0 -
Hi Rosegeranium
I am also new to this group. I am 4 weeks since right side mastectomy. 2.7cm tumor. ER+, PR+, HER2+. Margins and lymph nodes were clear. I met with the MO on Monday. He gave me the option of TCHP Chemo or Taxol and Herceptin only.He said if it were him he would opt for plan 1.I am having difficulty deciding which. So many decisions. Phew.... I am having so many anxieties about starting chemo, trying to work and keeping myself healthy. There has been so many helpful posts here.
Is anyone familiar with the TCHP chemo? Also, is anyone familiar with the cold cap treatment? Does it really work?
Thanks....
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Cp - I did TCHP and used Arctic cold caps, with fair success - kept about 50% but had a lot of thinning on top. Check out the cold capping thread for lots of info and support.
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Hello to All the Newbies! We welcome you warmly though we are sorry you have had to join.
Cp7865, TCHP is:
docetaxel (or Taxotere) https://www.breastcancer.org/treatment/druglist/ta...,
carboplatin (or Paraplatin) (https://www.breastcancer.org/treatment/druglist/ca...),
trastuzumab (or Herceptin) https://www.breastcancer.org/treatment/targeted_th... and
pertuzumab (or Perjeta) https://www.breastcancer.org/treatment/targeted_th....
It is a common chemotherapy mix.
You may want to look at this conversation on Cold Caps, as you'll hear what others have to say, in addition to what is on this thread.
And take a look at our content here: Scalp Cooling
Thinking of all of you!
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cp I worked during chemo. I did 9 hours in the office monday through Thursday, then took 4 hours of fmla on fridays. Towards the end, last three treatments, I also took mondays off. Day 3 after treatment was always my worst day. You can do this...
Hugs!
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Cp7865 There are drugs for anxiety. I took Ativan the Sunday night before chemo on Monday. That was all it took. Something to take the edge off. I cold capped and kept about 60% of my hair. Make sure you use dry ice to freeze the caps.
To CP and everyone new ... Ladies you have this. Really. When it is early on everything is scary, new, and crappy. Then one day you will be at treatment and helping someone else. Or you will log into BCO and welcome a new person sharing your experiences.
I never knew the person I could be until I had cancer. I like myself a lot better today and (as I always say) I got a great rack out of it.
Have a wonderful weekend all.
Love, Vicky
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thanks ladies, I am honestly having a hard time figuring out if I want to keep a short style.
Welcome to all the new ladies! Sorry you have to join us. As it has been stated ask plenty of questions *no question is a dumb question except for the one you don't ask*
I love my new boobs! My PS did a wonderful job. I think I will be having 1 more fat grafting and a small lift to bring the unradiated side up some. They look great in a bra but without they look lopsided 🤔
I have lost 28# pounds in 6 months so I now need to go clothes shopping. Lol. My MO was very worried so she ordered a PET scan, the results came back CLEAR!!!! yay. So she thinks Chemo is just finally catching up to me.
Have a great Saturday!
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Shelabela - yay on all your positive news! I was really lopsided until I had my revision surgery and now everything is even. The revision surgery was a piece of cake, quick recovery. I wish you the same.
Welcome to all the newbies, sorry you have to be here but this is a wonderful and comforting group for information, support and inspiration. This is a safe place to express whatever is on your mind and ask any questions. We're here to help! Don't look at Google, it will just scare you and make you more anxious. I rely on my fellow triple positive friends here and there are many reliable resources on the bco.org website on just about every topic you can imagine. Stay in faith, you've got this. As weird as it might sound, I am in a better place today after my cancer experience. I am healthier, stronger, more positive and enjoying each day to the fullest. You will be too!
Laughing - beautiful picture! I am so happy you are feeling great these days ;-)
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Mactaz - I had also two tumors but far apart and enhancements in the outer quadrant (close to lymph nodes). Before I started targeted therapy I had swelling in the lymph nodes so my MO ordered an ultrasound which didn't really confirm anything. After 3 months of Herceptin and Perjeta (I didn't do chemo) I had another ultrasound and the swelling was gone. However, even though the swelling was gone and it didn't appear that there was any cancer activity in the nodes, my MO told me confirmation of whether cancer has spread to the lymph nodes occurs at time of surgery. I can't tell you how happy I was in the recovery room when the nurse told me my lymph nodes were clear....I pray the same for you (((hugs)))0
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hapa - congrats on your surgery. Hope you are healing nicely and feeling better soon
Homemade - glad you are getting relief from your rash.
Treysrib - could the nausea be from Herceptin? I got really nauseous the day of Herceptin infusion and for a day after. I didn't have nausea while on anastrozole, just terrible body aches. I would check with your MO just to be sure. I hope you feel better soon
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Has anyone had sudden onset swelling from the AI? For the past week my feet, left knee and lower legs are noticeably swollen by the end of the day. I am fine earlier in the day but by evening I can barely walk my feet are so swollen. I thought it might be from all the walking I do (6-7 miles a day) but I have been walking consistently for 5 months now so it's odd that I would experience swelling now.
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I am behind on posts - will try to catch up a bit later, but deni I wanted to address your swelling question. Last year I had rather sudden onset swelling of my left foot - enough that most of my left shoes could not be worn. I had mild swelling of left and right leg, and right foot. I was checked by a vascular surgeon and ultrasound revealed incompetent veins that caused pooling blood in my lower extremities, particularly after prolonged standing. This was addressed by endovenous laser ablation, and was a relative easy process. My left foot returned to normal, and the heavy feeling from my legs is gone. I would encourage you to get this checkedbecause if this is your problem, there is also a clot risk.
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Taco, my last Taxol was at the end of February and my hair is about an inch long on top. I wore my wig today and justed wanted to rip it off. It wasn't very hot today but wow I think it must have been humid. I was miserable.
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specialk I knew you would provide the encouragement and advice I needed. You are such a blessing to me and so many others.
I will get this checked out as soon as possible. It does seem very strange how it came about suddenly. Thank you so much0 -
deni1661:
I'm just curious, did you opt out of chemotherapy or was it just not recommended/necessary for the type of cancer you had?
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Well, I got my path report back from surgery and it looks like chemo was mostly a waste of hair. The tumor went from 2.8 to 2.3cm after six rounds of TCHP, and I had three positive lymph nodes. I'm supposed to go in for my next herceptin on Wednesday but I'm not sure there's even a point because it doesn't seem to have done much. The RO is going to have to be really convincing to get me to go along with radiation at this point, with all my axillary nodes removed and my breasts gone I don't know what is left to radiate, it seems like she'd just be doing more damage and I feel like I've had enough.
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Oh Hapa! I'm so sorry. I know that isn't what you wanted to hear. Let us know how the appointment with your RO goes. I hear you about having had enough.
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So sorry, hapa. I hope you feel better after you’ve had some time to digest it all. Also hoping your medical team comes up with a treatment plan that makes sense to you.
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Sorry hapa ((((hugs))))
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I'm posting this for Jaboo who can't read it online in the EU, and for all the triple positive ladies who are impatient with our long treatment and wondering if they'll ever be back at it. I found my lump in November and stood on the podium in August, with 4 more boost rads to go.
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Truly inspiring, Homemade. (I think I’ve mentioned my DH would love to retire to Driggs!)
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hapa: calm down and don’t despair just yet. I initially had a solid palpable 3.5 cm tumor and two solid palpable enlarged lymph nodes. After four rounds of AC and four of Taxotere + HP and clear MRI and clinical exploration, I still had a 2.5 cm tumor and two nodes with macromets, plus the pathology report saying “no definite response from treatment”. I was devastated -for a couple of days only (chemo has taught me not to squander days)- but, good or bad response to chemo there is only one way: forward. Two things I cling on to keep hope: first, I know I had a response to chemo because the super-solid mass turned into scattered clusters, and the enlarged lymph node, 1.5 cm initially, was no longer palpable or visible anywhere although there were some much smaller mets. MO suspects at the beginning probably my entire breast was full of cancer rather than just the solid mass. Also after chemo the cancer weren’t from grade 3 to 2. Second, my cancer was 95% responsive to ER and PR so the MO says the chemo probably killed the fastest growing cancer and now what remains (if anything) hopefully will be responsive to hormone treatment. So I went for radiation (greatly reduces the chances of local recurrence) and hormone treatment (oophorectomy + AI) and hoping for the best. Another poster a few pages ago got similar results and was told the same by her regular docs and second opinion docs. Yes it’s not great but keep going. Exercising greatly reduces chances of recurrence so I am doubling down on that too.
Thank you homemadesalsa for posting the article, I am on vacation in the EU and couldn’t read it either (weird!) I was waiting to be back to read it. Congrats dear, you ROCK and inspire me to keep exercising!
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hapa: as for what is left to radiate, there are plenty of lymph nodes in the area that are not in the axila and it could recur somewhere else in the area. I was very thankful I could get radiation treatment and the side effects of radiation were minimal to me. I had it in June and July and it’s a distant memory. Totally recovered now. Yesterday I participated in a local ocean swimming race.
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And SpecialK if you have some words of wisdom for those of us in this situation please chime in, there are several of us in this boat of “sub-optimal” response to chemo. I for one I am *very* thankful for your presence in this board. Even if what you repeat what you have already said it will definitely be newly (and cumulatively) soothing to me!
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Hi everyone. I am new to this group. I was just diagnosed April 2018. I have had 2 surgeries and will be starting weekly Taxol soon for 12 weeks. I am going to read all of your posts. Hopefully they will make me not as scared. I am going to try it without a port. Hopefully it will work for the entire 12 weeks. Now onto reading.....
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rosee - welcome, sorry you have to be here, but this is a great supportive group. There are others who have gone without a port, it is legitimate choice. Make sure to hydrate prior to your infusion as it helps to make the vein easier to access, and using a warm towel just before they set the IV is also helpful.
hapa - I am so sorry that you did not receive better news, I know it is discouraging. Several thoughts - first is that imaging is not as accurate for some people. It was not for me in that I had a palpable 2.6cm lump that was completely unseen by mammography and positive nodes unseen by MRI, one of them big enough to have been classified as a stage 1 breast lump. It is possible that imaging underestimated the lump you had and it actually had more size reduction than thought. In looking at your sig line your initial Her2 result was negative, but you had one tumor that was later deemed Her2+ by FISH and were not multi-focal, correct? I am wondering about the percentage and strength of Her2 in the tumor. LaughingGull's posit that if your tumor was strongly ER+ that chemo may be less effective and your bigger bang will be anti-hormonals is quite possible, but also if your tumor was quite mixed with different Her2 aspects the targeted therapy may not have had as big an impact as it can for someone with a more homogenous tumor that is strongly Her2+. As far as rads, with residual disease I would consider doing it. Have a thorough conversation with a trusted RO and see what the justification is. Your axilla still has lymph nodes, and no surgeon can remove all traces of breast tissue, no matter how thorough. Having rads can offer some local recurrence reduction. Lastly, from me as a sample of 1, I had adjuvant Taxotere/Carboplatin/Herceptin. I will never know if that systemic therapy would have had any effect on my tumors, I had to take it on faith, same for many others who have been on this site for years. Almost everyone from this thread who was posting when I was receiving treatment had surgery first and are still doing well. Remember that the purpose of chemo is not to eradicate cancer in the breast, it is to prevent distant recurrence - even without a great reduction in tumor size the treatment so far could have been effective in that regard - that is the same boat those of us doing adjuvant chemo are in. Your surgery removed your known cancer, it is gone, hang onto that. I think there has been more focus on pCR percentage because neoadjuvent chemo is more common now since the advent of additional targeted therapy, and it does provide information, but is not necessarily the last word in the success of treatment. Hang in there, I know this is hard.
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Thank you all so much for the warm welcome! After trying several new prescriptions, my oncologist finally found one that worked. I lost 10 pounds last week alone due to not being able to eat. But now the stomach cramps are gone and I'm able to eat pretty much anything. Everything still tastes awful though. Today is my first day back at work. It's a struggle. I'm exhausted. I'm hoping here on out is smooth sailing until the next treatment. And hopefully that won't be as bad now that I have a good prescription to handle the side effects (not to mention lower dose of Perjeta next time around).
I will say, my lump feels almost half the size it was before treatment. I'm blown away by that! It was huge and hard, and very visable to the naked eye. Now I kind of have to feel around for it and it is more squishy. Is that possible so soon after first treatment, or is it all in my head?
Also, embarrassing question here, but... have any of you had the side effect of horrendous breath? I brush twice a day and floss daily, but my mouth tastes disgusting. I'm paranoid to stand too close to people while talking. Ugh.
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jbluesky - yes, possible to feel your tumor getting smaller, and I hope that it indeed is! If you were having trouble eating try to make up for lost protein in the between weeks so you don't become anemic. Dropping red blood cell counts and hemoglobin tend to occur in a stair-step fashion, dropping and recovering but not all the way back to where they were - this iscommon. The breath thing is sometimes caused by dry mouth, which chemo can cause - and also, the entire digestive tract is affected, so you might try some Biotene gum, made to help with that.
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