Calling all TNs
Comments
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((Annie))
CathyToo, can you please clarify? In my case I had a re-excision, so that was my last surgery. My MO says it’s the date of my first surgery.
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Marsha, Annie, Mandy, I’m thinking of you, and sending love too there is so much respect, love and support for you all here.
Congratulations on 2 years post surgery Cathy I’m happy that the anxiety is receding. I tell myself a story that whatever happens, everything will be fine, and I believe it. I believe that all we can do is look after ourselves and everyone else, live a good life and do our best to stay positive.
XX
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Lookingforward, I am sending my prayer for you. Hope your Monday scan will be all good! It's amazing you are approaching the 5 years mark. Keep your eyes on it and we are all here to support you.
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Looking forward,
I AM SO MUCH PRAYING FOR YOU! I would imagine getting closer to the 5 year mark makes one especially sensitive to any "unusual" feelings in your body.
Love,
Janet
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I am feeling particularly sad this weekend. From the beginning of this cancer journey I think I handle everything pretty well, taking the bad news of having cancer, more bad news of the cancer being triple negative, the pressure coming from work and family, and making numerous decisions all by myself. But the latest bad news from the chemo treatment made me really really sad. I had 4 dose of AC treatment and then found the tumor doesn't shrink much, from 2.5cm to 1.7cm. My oncologist, my surgeon, and even my nurses thought it's an unfavorable result. I am very disappointed and discouraged. Chemo is hard on my body. I was admitted to hospital 3 times out of the 4 treatments because of infections. I don't want to believe all these efforts are for nothing. And for triple negative, if the chemo doesn't work, what else?
Does anyone on this board has similar experience? I really need some good news from you ladies. Anyone whose chemo doesn't go exceptional well but still survived? I read lots of posts saying the chemo work very well and the tumor shrunk to non-existence. I am very happy for those ladies but I also want to know if there are long term survivors who had the same experience as mine. I am 34 and live abroad away from my family. There are just so much bad news I can handle. Thank you for hearing me venting.
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LookingForward - You'll definitely be in my thoughts, especially tomorrow when you have your scan. I hope the PET goes smoothly and you get a quick all clear report.
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Ewu, how disappointing and frightening to learn that your tumor didn't shrink more. I had surgery first and am only nine months out from my own chemo so I will let others speak to long-term survival; however, I did go through this journey alone to a great extent so wanted to offer my empathy. My friends have been amazing about helping with transportation, but dealing with tough chemo is especially challenging when you don't have someone in-house to deal with housework, laundry, pets, bills and reams of insurance paperwork. I know it's not tangible help, but many understand your dilemma and wish you well.
Will you still have a taxane drug, such as Taxol? I think some patients have taken Xeloda in your situation so they may be able to provide valuable input regarding their experience with the drug. What did your medical team recommend going forward? I'm very sorry that your facing this with little support.
Lyn
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Dear ewu, My diagnosis was almost exactly like yours and that was 7 years ago! My surgery was before chemo. I hope my experience will give you hope.
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Lyn - Thank you for response. My medical team suggests surgery now, and then continue the Taxol chemo. I'll opt for bilateral mastectomy. I wish I had surgery before all the chemo so I won't know whether the chemo drugs work or not. Now I know I cannot unknown. Logically I understand it doesn't make a difference in long term survive no matter I do surgery or chemo first. But mentally I'll have to bear the burden of always know my chemo doesn't work now. I need to draw more strength from somewhere to get over this.
Cabarita - This is great news! 7 years out is fantastic. I want to somehow forget the bad chemo results and focus on the positive things. Focus on hope. I am usually in a good stable mood and can calm myself down from anxiety. Only this weekend I really need word of encouragement from other people. Thank you.
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ewu - I totally understand being upset and sad. I had surgery first and sometimes I wish I could have had chemo first! How do I know chemo is working?
I do know there are people on here who had poor response to AC but good response to Taxol. Also you had no node involvement, which is great. Definitely a lot of women on Xeloda if poor response to chemo.
The truth is that there is a good chance the cancer never left your breast and the surgery will remove it.
Know I am thinking of you. Try to find brightness in each day.
Hugs
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Dear Ewu - I am sorry you are going through a disappointing time on this frightening journey we are all on together.
I am going through this on my own, too, without a partner, children or parents. I understand how that makes a lot of this difficult in a way that's hard for some people to understand. Friends are a great help, but not quite the same. Please feel free to PM me if you ever just want to vent about that.
My tumor did respond well to A/C, but it was so large originally that it is still 2cm. I am having Taxol now and will take Xeloda after surgery, too. They can work in ways that A/C can't. Don't give up hope that another chemo treatment will work.
Also, there is radiation. Are you having that as well?
All the best as you get ready for your surgery.
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LoveMyVizsla...I really think there is no definitive answer to when you begin counting. Personally, I think it should be the date of your last treatment, especially when chemo is involved. In my case, the MO was emphatic that it should be the date of my last surgery. But, she was not aware that I had gotten clean margins the first time. My surgeon did not do a sentinel node biopsy the first surgery because my core biopsy showed the tumor was DCIS. However, after the first surgery it was discovered that there were some trace invasive cells so that required a second surgery for a sentinel node biopsy. In you case, my MO would probably say count from your second surgery. We’re they far apart? Mine were three weeks apart
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Dear Annie - so very, very sorry to hear of your news about the cancer in the chest wall and sternum - you must be in a lot of pain. My heart is heavy for you and your family during this tough time. Appreciate every moment to its fullest with those you love and cherish. Praying for you and wishing only calm, serene thoughts for you - your family are blessed to have you. You are all blessed to have each other. Peace be with you.
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Cathy, yes! First one was two years ago today! The second was 8 months later.
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Marsha, - thinking of you today and hoping for ALL CLEAR scan report!!
ewu, - the AC was, indeed, working, the tumor did shrink! Now, the followup meds will do the rest! Those of us who had surgery before chemo have no idea if it was effective or not. Also, I will always wonder if my delay in chemo (because of infection after surgery) was detrimental. So it seems that we always have doubts, but we have to always keep in mind that there are various treatment options to move on to, if need be!
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EWU ask your doctor about Carboplatin in addition to your Taxol. Carboplatin has been showing some promising results with TNBC. Definitely worth asking.
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I haven't logged in for awhile - super busy with life. I'm in that stage though where I over analyze every pain. My newest thing - I have a rash on my right (reconstructed) breast. It started out as a few bumps under my breast, which I noticed on Thursday. Since then, that area has become puffy, and now I have a rash all over the breast. I have no idea if I should be concerned, but I have an appointment to see my oncologist on Thursday. I had been so happy that I didn't have any doctors appointments scheduled for the rest of the year too. Friday is my two year anniversary of diagnosis.
I'm trying not to Google too much because I will obsess on the worst case scenario. But I wonder if I should even have a concern about IBC when that is not what I have had previously and have had a bilateral mastectomy and radiation.
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Full body PET scan done. Now to wait for results.ill let you all know ASAP
Thank you for thinking of me.
Marsha
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EWU, just thought i’d chime in.
i completely understand the frustration and despair of dealing with treatment and making decisions alone and having to deal with tumor response that was not expected.
I’m currently on dose 5 of 12 for paclitaxel + carboplatin. my MO stopped EC at dose 3 because we have “maximised the effect of EC”... it means my tumor shrank a bit but we also found out that there’s fluid where the tumor is. so when it “shrinks” some of it gets replaced by fluid. my MO thinks it’s tumor necrosis that isn’t being flushed properly from the body. i am hopeful it is.
Some days it feels like the treatment is not working because of this setback (among other setbacks) and had me demotivated for a few weeks. but i take hope strength fromothers in this thread. There are those that did not respond well to AC/EC that did very well on taxol or that it took them more than 6 or more than 9 infusions of taxol before the tumor started responding.
Hope is a powerful thing and you are doing so well in dealing with everything so far. It might not be ideal but you have come so far from the day you got diagnosed. you have done amazing things since then. I hope that you remember that you are stronger than you think.
We are all here and you’re not alone in this.
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Marsha- rooting for YOU!
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LookingForward...Marsha... Waiting anxiously to hear from you! Sending 🙏 for an “All OK” report. ❤️
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Good Morning,
I am stage 2A triple negative. I have had 4 dose dense AC and 2 dose dense Taxol with 2 more to go. My dr. says she can't feel anything left in my breast, but we haven't had any scans to check yet. I meet with my surgical oncologist on Friday. I am scheduled for a double masec with reconstruction. Even though my dr. says she can't feel anything and I'm having a great response to chemo, I can still feel a tic tac size "something." Is it possible for the tumor to shrink and be dead and still feel "something?" I have been praying for a complete pathological response and am so scared I won't get one. I know it's out of my control. I am wondering if it's still possible to have one and maybe what I'm feeling are dead cells? Any words are much appreciated.
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Ladies & Gent,
Thank you soooo much for being in my pocket.
I have always tried to keep Looking forward. Well I can do it some more. PET results: NED. Yea!!! Happy dance. Had consult with MO this morning. I am a medical mystery.
The good news is no cancer anywhere. The not so good is acute arthritis in my low back. Which is causing sciatic pain.
Prescription: more yoga.
Headaches: prescription. More magnesium. If not better, MRI with contrast. Which I can only do under LOTS of pre meds. Steroids & benedryl. Not for me. Also needs hospital stay. Nope. Has to get a lot worse to do that.
My diagnosis was originally 50-50 without Chemo. 67% with....So I tried Chemo. Two doses later & abrush with our Maker -stopped that. I have/had too many allergies to keep going. So I stopped & gave it to a higher power. Is hard & sometimes I failed. But kept giving it back. By MO's figuring I am blessed. I'll take that.
I am now considered 5 years out. Actual date. Dec. 26th. I now see her once a year & can cancel if I want & if life is getting in the way. I give most of my blessings to my surgeon. Have known him for over 30 years. (other non cancer surgeries over the years). He now specializes in cancer surgeries & booked solid.
So for all of you worrying. Take my story & run. My ki67 was 97. Ugh! Double mastectomy & no reconstruction. I had one lymph node involved & only two doses of Chemo & no Rads. My stats were not great. But there is hope, I am here & made 5 years, you can too!!!
Thank you Lord. AND
Thank you all.
This blog has many times been my pick me up. I don't post often as purposely tried not to dwell, but did read ALL your posts.
My prayers for all of us, is to live as long as God allows. Live our best life.
Again Thank all of you that were in my pocket. (A special thank you & many hugs to Annie! For many years of positive outlook & encouragement. We all were blessed by knowing you & your attitude. May you continue to keep your spirits & shine!! Much love Annie, thank you.
It truly helps knowing.
Merry Christmas.....Happy Hanukkah or Happy Holidays. What ever you choose.
YEA for NED!!!!!!!
Much love,
Marsha
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Lookingforward66 GREAT NEWS! You ARE indeed blessed! Happy holidays!
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Marsha, I like your story a lot! Congratulations on your results. I haven’t been reading lately but it sounds like you had a scare!
EWU, I can’t speak to long term results as I’m still working my way through treatment but I can say that I responded better to Taxol & Carboplatin than AC. Cancer has been such a roller coaster...I can’t even put into words how many ups and downs I’ve had. I’m just sorry that you have to go thru this too. I took a little break after surgery but this is a good place to come when you’re down, there’s almost always someone to lift you up
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that’s why this board is a life saver. We will hold your hand if needed or you can lurk.we can share good news and not so good. We can share our fears of upcoming tests, scans ,visits without judgement.
We can get best tips and comfort during treatment. I cherish each of you. Though I may not post, I read.
Val
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MARSHA...haven't read your entire post but I did read NED‼️ I am so happy. Late tonight I will your read your postthoroughly.
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Marsha - you are indeed blessed! So happy for you
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Marsha, - WONDERFUL update! (It's amazing that we are thrilled to have arthritis, but we are! )
Val, - I am much the same as you are about this board. I read more than I post, but I feel as though I know all of you. I am so very thankful for the friendship and understanding!
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Lynnard51, I found something you wrote confusing. You said that Mayo Clinic was in Phase 2 clinical trials for a vaccine. I happen to be a patient at Mayo Jax. They had talked to me about participating in a vaccine clinical trial approx. in April. By the time I finished radiation and went back in July for a follow up, I was told that the clinical trial had been delayed and they didn't really know when it would open up. Their trial was being paid for by the Dept. of Defense which requires a lot of hoops to be jumped through. However there is a clinical trial of the same drug being paid for by Tappimune and being conducted at Moffitt in Tampa along with a few other locations. Thanks to the diligence of my Mayo oncologist and myself making phone calls, I was admitted and am currently in this clinical trial. So my question is, are you referring to the trial that hasn't actually started at Mayo or did they finally receive approval to start it? Since I'm in the one at Moffitt, I am certain that I couldn't participate at Mayo but I'd be surprised to find it has started when I was told it might not have started before I was ineligible (1 year after treatment ended)
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