TRIPLE POSITIVE GROUP
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Congratulations Trisha-Ann! 7 years, wow!
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shel,
i am 45,my parents are out of the country as they dont live in the U. just learned yeaterday that my grandma ( mom'smom) who took care of me as a child is dying...its really tough. ....i wish i could turn back the clock..there are days when i feel alone ,too.. and i cry out of the blue...
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Shelabela, hugs, many hugs, you must miss them a lot. My eldest daughter had acne and she used to order some products from US. I will ask her and send you the list. And hugs again. Cherry
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thanks ladies! Just a down day. Hugs to all
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i have acne too
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shelabela echoing an earlier comment, I also was having unusual acne for a few months before my diagnosis. I also was having some mood swings and other things that indicated hormone imbalance. I went in to have my thyroid and hormone levels checked, Dr refused to test my hormone levels because I was young, but thyroid and fasting blood sugar were ok. She said maybe its just stress. 3 months later I went in because of pain in my breast and ended up with diagnosis. I do believe it is all connected to hormone levels.
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Talking about hormones running amok. I was having hot flashes at age 70 when I was diagnosed.
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Wow, a pattern (re: acne and other out of the ordinary signs before diagnosis). And yet not noted anywhere.
Shelabela, I am surrounded by family and yet can feel so alone. So I can't imagine how you feel at times. Sorry ;(
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Thanks Everyone!
Some days are harder. Obviously yesterday was a bad day. But as usual you ladies here help me a lot! Thank you all for listening and cheering each other on.
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hi all - new to this group - was recently diagnosed. IDC, 1.8cm, triple positive. Docs are recommending lumpectomy, followed by chemo and radiation (not sure which would be first)
Any advice on how some of you all made your decisions on:
-lumpectomy vs mastectomy (realize some may not have had a choice)
-did you have a consult with an oncologist in the beginning? The doctors I have spoken with all seem to say no need to speak with an oncologist now - can wait until after surgery.
-if you have had chemo, has anyone had experience with capping to prevent hair loss?
Thank
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beachgirl1, sorry you are here but welcome to the group there are a bunch of wonderful women here with priceless info that only someone going through this can give. This is just my view, I was also told I did not have to meet oncologist until after surgery,if I could turn back time I would have meet them as soon as possible, would have had more time to think and plan. They say there is a window of time between surgery and chemo(if you need chemo) for the best results (another thing they forget to mention) So my opinion meet them all get it over with.
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Wow Shelabela, I can relate to your post. My mom's birthday was Sunday and I still miss her terribly. She died 17 years ago. Mom's are the best and I often think how nice it would be to have my mom to talk to these days. This community is the next best thing. I'm so sorry for everything you've been through in recent years. Sending lots of hugs your way 🤗0
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So yesterday was terrible for me, I had 5/6 of TCHP last Friday and I'm so exhausted and my feet are killing me. The neuropathy is so painful. Just got back fron the dr and he precscribed Cymbalta and oxycondone for tne pain. I didn't get any sleep last night because I'm obsessing about the pain. Now I'm terrified of these meds but I just have to keep saying everyday gets better. One good thing is my tumor marker is now 38 so tne normal range. Anyone taking cymbalta for this? The dr said it's for neropathy but I doubt that. I think it's so that I don't care that my feet hurt so much. I know just 1 more chemo but then I have surgery, rads and Herceptin.
My in laws have a house in Port Aransas and they were evacuated here but have gone back to access the damage, and my father, who is 85 and lives alone in NC, called me yesterday and said that he is having trouble walking now and it's all so much. My mother died of lung cancer when she was 50 and I'm trying so hard to be strong but it's hard. I really wanted the dr to say stop tne last chemo but then I feel like I'm letting my family down and that made me super sad. I know these are the hard days but I wish I had surgery first. Just knowing how weak I am, then going to have surgery makes this hard.
Sorry for the long vent, just needed to ask.
-Laura :
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thank you HapB and Kimberbir - very helpful and thanks for the welcome. Good to know I have company- sending good wishes to al
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ltwj - Cymbalta is used for fibromyalgia, so it has legitimate potential to help with your CIPN pain. My CIPN dissipated gradually and was gone by about 90 daysPFC. If it offers any hope, infusion #6 was my easiest and the first that didn't cause GI distress. Hang in there.
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Beachgirl1 - I used Penguin cold caps and saved my hair. Here is a link to one of the discussion boards on cold capping: https://community.breastcancer.org/forum/6/topics/735873?page=644#idx_19303 I had weekly taxol/herceptin and lost almost none of my hair. That is by far the easiest regimen for cold capping to save hair. Results with other chemo regimens vary. I also recommend you go to rapunzelproject.org for lots of good information. The Rapunzel Project is a charitable organization that offers medical freezers to chemo facilities to use for cold capping (instead of the patient having to haul dry ice). There's a list there of facilities that offer the medical freezer, as well as the "machine" type cold cap that was recently approved by the FDA.
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Thank you SpecialK, I see the side effects for it and it scares me. Just trying to stay positive without more problems. Glad to hear # 6 was better
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Hi Laura,
I am so sorry that you are having all those troubles. Taxotere is not easy but you have only one left and then it is over. The surgery will not ususally take place right after chemo, I believe there must be at least a month in between, and after a month hou will feel so much better. Now I am new to this myself and only done two chemos but everybody says it gets better. And having surgery after chemo is the only way to see whether your tumor will have response to the drug which is not possible when you first have surgery and later chemo. Is the area where you live in TX affected by the flood too? I am not in US, I live in Sweden, but I saw on the news. I wish you will feel better soon, Cherr
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could hypersensitive teeth be a side effects of chemo? my teeth are super sensitive right now....
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thank you cherry-SW. We are farther north and not really affected but my husbands family is and it's scary. I've decided not to take tne Cymbalta and try other methods. I just hate that my onco just chases everything with another prescription with worse side effects. I have to go back to work soon to keep my health insurance and I need to reduce these SE to do so. Just got to keep the positive ideas in my head :
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LTwJ,
how about taxotere dose reduction in the last cycle
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Met with RO this morning for 3 month check, everything looks great, he doesnt need to see me again! Had 3 month echo done, results in few days. Its been a week since my first herceptin only, really havent noticed anything, no bone pain, nothing. I did have mild headache couple of times, chalked it up to not enough liquids. Understand it may take a while for fatigue to get better. Traveling this weekend to help daughter and SIL celebrate birthdays.
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LTWJ et.al. - I recently read a study about peripheral neuropathy and Cymbalta and it's affect on diabetic PN and it was kinda funny. 30% of the people in the study who received Cymbalta felt improvement in their symptoms - but 34% of people who got the placebo also felt improvement -I'd like to know what was in that placebo!
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Laura, hang in there, there is no much choice anyway and of what I understood the bone pain after Taxotere does go away. I have been reading this thread from the beginning and your SE are typically Taxotere but it gets better. I hope it will resolve itself for everybody in TX who is affected by this flood, it is very scary I agree, Cherry
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thanks PatinMN - I appreciate the inf
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Hap - yes, PN is one that sometimes improves with time. Conversely, placebos sometimes make people feel better if they don't realize it's a placebo. But it's still kinda amusing that the placebo resulted in a higher perceived improvement than the actual drug!
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beachgirl- sorry about that you find yourself here but this is a great group for information and support. If you can, I would meet with an MO before surgery. It's helpful to find out all your options up front and even go for a second opinion to make sure you are completely comfortable with your treatment choices. I sought out a second opinion because my hometown MO gave me only one option and I just didn't feel comfortable with the "one size fits all" mentality. I knew my current MO was the one within 5 minutes and I'm so glad I didn't just settle.
Sending prayers and hugs your way as you begin your cancer journey. We are all fighters and you will beat this too 😊
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Today was my last infusion of HP! It was an emotional day for sure but I am so happy to reach this milestone. I am cancer free at the moment and plan to continue with my clean lifestyle of good nutrition, daily exercise and minimal stress. Recurrence is always at the back of my mind but there are many women in this forum that inspire me and give us all hope that we can achieve DFS - Kattis, rozem and Trisha-Anne CONGRATS on your milestones and thanks for updating us on your progress.
I am grateful for all the support, encouragement and information from everyone in this group as no one else understands what we go through. Sending best wishes and hugs to all.
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Beachgirl1 – While speaking to your oncologist is important, I think it's just as important to speak to your plastic surgeon. My breast surgeon gave me the option to do a lumpectomy, but when I met with the plastic surgeon, she said that due to the small(er) size of my breast, a lumpectomy would remove at least half of my breast tissue. She said that I wouldn't be happy with the cosmetic results. That affected my decision, but ultimately, I chose a mastectomy because it "felt" like the right thing to do.
I also did cold capping and was able to retain around 50-60% of my hair. No one besides me and some close friends can tell that I've lost hair, but it does look on the thinner side. I used Arctic Cold Caps. It was a lot of work but absolutely worth it. I did that, in part, for selfish reasons, but also to help make this easier on my kids. I figured they would be able to handle the whole thing easier if I still looked like me.
Good luck in your decision making.
LTWJ – My 5th and 6th TCHP treatments really kicked my butt. I'm sorry to hear your neuropathy is so painful. I hope it gets better soon. Just think, in a couple of weeks you'll be looking at chemo in the rear view mirror. It's a fabulous feeling!
Congratulations deni1661! Wishing many cancer free days ahead!
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I have my first appointment with my oncologist tomorrow. Any advice on what to expect, questions to ask, things to take, etc. would be most welcome!
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