Calling all TNs
Comments
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Thank you for all the new research and tests info. My surgery is 4/23, but I'm meeting with the surgeon on 4/4. I like to be able to ask good questions, and y'all sure know them!
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AgathaNYC...congrats on your PCR! That is wonderful
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Thanks, A4ggy! I'm still riding the high.
I saw my oncologist on Friday and she told me that after radiation my treatments are over. She won't be recommending Xeloda, neither will I go into a TNBC androgen receptor positive clinical trial my hospital is running. It's a little bit of a mental shift I have to make since I was assuming I'd be having 18 more months of some sort of treatment. Now I am in the "trust" phase, not the "actively fighting the cancer" phase. I think I need a little more time to get comfortable there.
Hope everyone is enjoying the weekend.
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I understand how you are feeling, but ride that high! Did you have a lumpectomy? Is that why they are doing radiation? My docs didn't recommend any further treatment either. I had as close to a PCR as you can get. Like a 99/100. The docs actually said another hospital wouldn't have found the tiny less than mm left. But because of the <mm I opted to try xeldoa. Finishing cycle 1. My doc has me taking it with little threshold for side effects, so if it gets back I can stop. She isn't even sure it will help. But why not try! I can't remember if I told you all this before? chemo brain. I am really happy for you. How wonderful!
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Hi, A4ggy - yes, I got a lumpecomy and will follow with whole breast radiation.
My oncologist told me that there was no evidence to support Xeloda's efficacy in people who got a pCR. Not that it would hurt, but that it might not benefit me at this point. Also, I have pretty bad neuropathy in my hands and feet still so she doesn't want to add another layer of SE's on me. This is where the trust comes in. After radiation they are releasing me into the wild again ;-)
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My onc doesn't know if it will help me either bcus of my response. It was a hard decision for me. I didn't have radiation though, so I weighed pros/cons and went with the xeloda. We will see how it goes. It is like being released into the wild! Very good analogy!! I keep repeating to myself when I feel anxious " Do not be afraid, only believe" seems to help to have a mantra.
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Hello All
Had my six month checkup with the oncologist. All is well. She mentioned they are now adding Xeloda to Triple Negative patients as part of the protocol. It is done after surgery and before rads. I asked her if I would have benefited from it, she said the studies though promising, to her did not have a high enough percentage of staving off recurrence. Additionally I had complete PCR. You just never know. Previously in the US, it was usually given to metastatic Triple Negatives.
I'm encouraged how things are progressing for TN's. My second opinion Dr at MD Anderson concurred.
I don't think I could have taken a 6 or 8 cycle drug after surgery. Mentally.
Val
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Hello All,
Have been out living. More relaxed since passed my 5 year mark. Had to go to Bascom Palmer eye clinic, (part of University Of Miami Hospital) for double vision problem. They said even though I only took 2 doses of chemo (A/C) it could have come from the Chemo. I know my tinnitus did. Got it 2 days after 2 dose. Long story short new prescription can fix it. Yea!! The double vision that is, as no help for tinnitus.
I have been back & forth to my daughter & son-in-laws new home. Back to farming. Cows, chickens, goats, quail, ducks, etc. 20 acres in God's country. I love it. My son-in-law commutes 3 times a week, otherwise stays with BH & me. I have been going up 2x a month & will slow down to once a month soon. I have been helping her repaint the house, make drapes, hang pictures and general handyman. When son-in-law comes up he's doing all outside stuff right now. It is beautiful up there, I could stay in a flash. Lots of wildlife too. Bears, bobcats and Sandhill Crane's, just to mention a few.
So good to feel that life can go on. I still have a day now & then but no more looking over my shoulder for that shoe to drop.
One of my doctors told me he feels certain that part of my doing so well is my attitude. “I follow up healthwise but I follow through in life."
So I think attitude can help. So good to see that you all are keeping it up. This is doable. Look at my stats, I made it this far, you all can too. A good team is vital. Knowing your body is also a help.
Bless all of you.
Marsha
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Marsha that is good news, it’s great to hear from you. I’m also feeling good and moving on from cancer. There are many days when I don’t think about cance at all.
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Marsha, thanks for checking in. I love hearing from people who are doing well.
Rebekah
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Marsha and Scot, - so good to read your posts!
Happy Passover, Easter, and Spring to all here!
Hugs from NYC
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rdeesides, I got no response from the first half, the adriamycin/cytoxan half, of ACT. Though I did get a response from Taxol. I just received the last injection in the Tapimmune trial but I don't think we'll get individual reports of whether we've had a good response. I don't think there was any testing for PD1 or PDL1 before enrolling in the trial though they took about a dozen vials of blood so they probably did tests for all sorts of things.
Great news Agatha.
For those on the brink of radiation, I developed shoulder pain after radiation, though it didn't show up until weeks later. I was sent to a wonderful OT in Manhattan who specializes in breast cancer side effects and I'm doing exercises that have almost corrected the issue. I had developed a misalignment of the shoulder joint on the treatment side. The OT says this is quite common.
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aterry- was your shoulder pain cancer side? I started having shoulder pain during radiation on the side opposite my cancer. It has just started to go away a month later on its own.
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Hi there, I had neck and shoulder pain post radiation. It was from holding my arms above my head every day for 30 days. OSteopath helped sort it. Had I realised it as happening I think I could have done some exercises to prevent it.0
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aterry, ok that's good to know. I had some reaction to AC, but none on Taxol and it even grew on Taxol it seems. It's good you were able to get into a trial. I think that would give me peace of mind. If you find out anything more about the trial results, let us know.
aterry, vl22 and helenlouise, I am going through radiation now and have been trying to stretch my cancer arm, but have even considered the other side. I did some yoga yesterday to try and stretch things out but I will be more mindful that this can be an issue. Funny that the pain can show up post treatment. I wouldn't have thought that.
Rebekah
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rdeesides- that is a very good idea. Doctors tend to down play everything and sugar coat it all. After Taxol I had horrible muscle and bone pain for weeks. That combined with radiation- ugh. My right side hurt more, so I used my left side way more - thus, I believe, the sore shoulder. I just hit 100 days post chemo and 1 month post rads and I can say im starting to feel more like myself.
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rdeesides, The shoulder pain was caused by a subconscious reflex to sort of hunch my shoulders forward--which is a protective thing we've all done, against a cold breeze, say. I didn't realize I was doing it. Then my pectoral muscles were tightened and the shoulder joint was misaligned which caused irritation in the rotator cuff area and in the biceps tendon. If I'd been aware I was doing it I would have done exercises all along. I'm doing shoulder rolls, supine shoulder flexes, shoulder flex at a wall, lemon squeezes with the shoulder blade muscles. These exercises are to reteach me how to use my shoulder and core muscles properly and regain range of motion. My cancer center has yoga classes that I have not been able to go to because of schedule but I wish someone had taught me the range of motion exercises going into radiation. I guess I can't expect them to do everything--they already do so much. Probably most people don't experience this problem.
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Also, rdeesides, I know there is research going on to help determine, prior to chemo, which agents will work on which individual tumors. Before I got cancer, I had no idea that the details of a tumor varied so much from patient to patient. Another clinical trial I'm in takes samples of tumors and inserts them into a mouse avatar so that they can mirror the treatment the human is getting with the treatment the mouse is getting. This is a proof of concept trial and presumably in the future they'll try a variety of treatments on the avatars and match that with the characteristics of the tumors. As you said, these trials can provide some peace of mind even though this one, in particular, probably won't provide information soon enough to guide decisions for those of us currently under treatment.
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Hello role models! I've been a lurker for a while and am so impressed with the care demonstrated between members. You are all remarkable and have been helpful to me by sharing your experiences through each phase of treatment. I'm hopeful one of you might have insight on IMRT (a type of rads) and insurance. From diagnosis I knew radiation would be part of my treatment and now two weeks after my rads consult insurance denies the IMRT. I like my radiation onc and think he has a good plan but can't seem to get beyond insurance. My cancer is right-side, so protecting the heart isn't the primary concern for insurance. The radiation of all the lymph surrounding the breast is where I think the more target, consistent radiation will be useful. Any tips on how to convince anthem of this?
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Hello Hats2, Thanks for posting it's good to know that you've been finding support by reading the forums. If you do a search using the term IMRT you may be able to ask people who've posted about this treatment if they had any insurance issues. You could also do a search using Anthem in the search field. I've been lucky in that my center has handled all my insurance issues so I don't have strategies to share. I hope you solve this since, of course, you want the best treatment that is available.
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I’m 42 - diagnosed a week ago today.
Triple negative with Ki-67 of 92%
1.7 cm mass left breast
Mom of 4 - only two at home. Work inside sales from home
I have more questions than anything at this point but meeting with breast surgeon in a few days
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Charmell, welcome to the club you never asked to be a part of! Let us know if you need anything.
Rebekah
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I'm in a rough place tonight, fellow TNBCers, after meeting with my breast surgeon this afternoon -
1. While I got a significant reduction, I did not get a cPr. I have two small active cancer places in my right breast so need both a mastectomy and axillary dissection - the latter because my sentinel node was biopsied and was positive when I was diagnosed. The cancer had shrunk so much I had my hopes up for a complete pathological response. The two remaining places, "nasty spots" according to my breast surgeon, are much smaller than my orignal tumor: 5.8 cm to 10mm and 20 mm. She staged me as T3A and right on the line between N1 and N2.
2. My surgeon's office told me 4/23 surgery. Now I learn that it was her GOAL to have surgery that week. My daughter is flying over from Ireland 4/22 for one week. What's the chance that Delta will let her change that? Not much these days.
3. I had hoped to have DIEP flap done with my mastectomy, but now my surgeon feels I need to get an expander for radiation and have surgery later for the DIEP and reduction of my left breast (I'm DDD). My plastic surgeon said I could do the DIEP at the same time, but my breast surgeon says MD Anderson advises not to with TNBC.
4. This means I'll for sure have Xeloda and probably go on a clinical trial for Keytruda for Stage IIIB TNBC run by my MO. That means, assuming I can tolerate Xeloda and get in the arm that receives Keytruda, I'll be on chemo from Oct 2017 through the end of 2019.
I know, I know . . . it could certainly be worse. I'm just feeling sorry for myself tonight and wanted to vent in a safe space. Thank you for listtening.
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I’m so sorry. It sucks to not be done when you thought you would be. It’s a shock to the system. It’s great that your doctor is being so proactive though! That can give you some measure of confidence in your care at least. Hugs. Once your mind is able to wrap itself around this news you will hunker down and get it done, just like you did with chemo.
Rebekah
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Thank you, Rebekah.
I'm fortunate to be able to talk to friends who have helped me, including you!
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Thank you aterry for the advice. I finally have the planning session scheduled and my radiation onc has assured me that 90% of their patients receive 3-D and not IMRT. The denial was an insurance error. I thought perhaps the aggressive nature of TN was a reason for the more precise radiation. My team has been wonderful in coordinating my treatment. They reassured me that starting radiation within 12 weeks of surgery is meeting the standards.
PaulaAtlanta I'm sorry you received disappointing news. I didn't have a pCR either and completely understand the let down when it seemed the tumor responded. I have heard of a genome study that uses the tumor genes to match to known chemo agents. It may still be enrolling. The bummer is exactly as you said, months of more chemo. Wishing sunshine to come your way.
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Hello, all! I was diagnosed in December 2017. I've mostly lurked here but I did reach out to others with multifocal. I'm currently doing weekly Taxol with Carboplatin every third week. My last Taxol was delayed due to low counts. MO says now we will do Carbo weekly so it's more tolerable. This scares me a little. I just want to get my treatments on time. I did fine with AC and mammogram and MRI showed significant decrease. You ladies have been such a wealth of information and source of hope. Thank you all for sharing your experiences.
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Hello Ladies and A Gentleman Or Two,
I am proud to announce that this coming Sunday, April 8, 2018 my absolutely amazing rockstar of a beautiful wife will celebrate her 5 years from diagnosis milestone! I am so proud of her, as this was her second battle with the monster. The first was an unrelated lymphoma 17 years prior to her TNBC. Thanks to God, this forum, this website and everyone, new and "experienced", that has been so supportive, informative and inspirational over the past 5 years! What a blessing breastcancer.org has been.
That said, all of you newly diagnosed ladies, there IS a light at the end of the tunnel! It DOES get better and you WILL see this milestone as well! Keep the faith!
Love to all,
Mike
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Beckham2, I had weekly Carboplatin and it was no big deal. Hopefully it will be the same for you.
Mike, I’m so happy for you and your wife and this gives me hope too. Congratulations!
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Mike,
Thank you for sharing your wife's anniversary with us. It's so encouraging. Enjoy the 8th - hope you both do something memorable.
I'm not sure when to start counting towards my anniversary: my diagnosis, end of chemo or when I got my pCR result after surgery. Or maybe when I finish radiation?
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