Calling all TNs
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Great news, LookingForward!
Melissa, I hope you find that encouraging. I do! I initially passed on chemo when I was diagnosed hormone-negative, HER2+ based on my biopsy. I'd just survived six months of excruciating pain due to a misdiagnosed inflamed sacroiliac joint and herniated disc. The idea of six months of two chemo drugs & two targeted drugs followed by surgery, possibly radiation & six additional months of Herceptin was just too much to bear at the time. I went forward with lumpectomy & the solid tumor pathology showed triple negative so no Perjeta or Herceptin. I did have AC+T chemo although I skipped the 12th Taxol.
I still live with the fear as you do because not having neoadjuvant chemo, I have no idea if the drugs worked. My genetic test showed mutations generally associated with chemo resistance, secondary tumors & a poor prognosis so I don't know if I sacrificed five months & thousands of dollars for no benefit or if the chemo zapped every blasted cancer cell that needed killing. I also have nasty neuropathy in my hands and feet from the Taxol & lymphedema from an ER nurse ignoring my concerns about putting an IV in my surgical side arm when I was seen to rule out an AC-related blood clot.
There is no right thing to do. Chemo isn't a guarantee that cancer won't recur or spread. It just tweaks the odds a bit. Many find comfort in knowing that they've thrown everything possible at the cancer, but, of course, we don't know in advance who might suffer permanent side effects from drugs or radiation. We can only do our best to gauge the risks versus potential rewards, choose our path & hope for the best. The first person I met in the chemo room was a lovely Stage IV triple negative woman who was diagnosed at Stage IA so sometimes it feels like our treatment is a total crapshoot. I think the uncertainty is one of the worst aspects of cancer, but the majority of us WILL survive this #&+#@$ disease!
As to scans, I got a chest and abdominal CT scan & an echo as a baseline before starting chemo. During the ER visit, I had another chest CT and subsequent echo. I'll have a follow-up chest CT scan next week, but only because there is a lesion in one of my lungs to justify insurance paying for the monitoring.
Lyn
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Our first grandchild. Born March 23, 2017. Brian James
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Congratulations, ALHusband. He's adorable. Enjoy him while he's this little. My "adorable"grandson is now six foot three! I have to stand on a chair to give him a hug!
Trish
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I love these baby pics! SO SWEET!
Trish, - you are funny!
I hope that I, too, will one day have a grandchild to post about!
Have a great weekend!
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Hi there!
I am wondering if I'm in the right place
My mom was diagnosed with triple negative breast cancer several months ago. It was caught early - not by mammo but ultrasound. She's had a lumpectomy and started chemo recently. At first it was "not so bad" but she's had several rough days (mostly extreme fatigue and digestive issues). I wish I could do all I can to prevent these problems, and I guess we learn what to expect from how she reacted to the drugs this time. It just all seems so surreal. Can't believe it's happening to her. Does anyone sometimes feel that the caregivers life can be more difficult and anxiety-ridden than the patient (not saying the patient has it easy whatsoever, but that the caregiver sometimes needs a caregiver?). I wish I had so much more time to help her prepare for the next part (losing hair - what is best way to deal with that one emotionally?). What is the best way to comfort/care for the patient while somehow/someway caring for yourself?Thanks so much for your time!
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The grandbaby is so cute, ALHusband!
I'm sorry that your mother has cancer, Kayla, and know it must be very stressful for both of you.
Lyn
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Good evening to all of you. I am new to this thread and tried reading some of your posts to see what to expect in my upcoming treatments. I'm a triple negative although at first with biopsy they told me I was positive positive negative. Turns out that was wrong, after I had lumpectomy the pathology of the tumor was triple negative. I also scored a 44 on the Oncotyping. So it is my understanding I really didn't need the onco score because being I'm triple negative and a grade 3 it's considered an aggressive tumor. Is that correct? I had lumpectomy on May 5, I'm healing very well from that. My arm is sore to reach for things, I actually thought I pulled a muscle in my forearm but the BS said it's from the lymph nodes removal. I did meet with the RO and everything was put on hold until we knew if I needed chemo or not. I met with the MO twice but not since I got the onco score, I see him Wednesday to start a plan. What should I expect with chemo? Will there be tests he orders before I start to make sure there isn't cancer anywhere else? How long will chemo be? Some people say you might not lose your hair, how is that possible? Sorry for all the questions but feeling helpless. Need advice from people who have done it and knows how I feel.
Diagnosed at 44 years old.
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susie 207..,, Sorry you have to be welcomed into our group...but putting that aside...Welcome! Before long you will have many women welcoming you and offering you advice, caring and emotional support. We've all been in your shoes and can understand your fear. As you gain some answers to your questions and have a treatment plan in place, you'll feel less anxious and be ready to fight this disease. Best advice I can give you is to stay away from the internet. This was the hardest thing for me. I would wake in the middle of the night and start Googling to get some positive info on TN breast cancer. Listen to your doctor and just move ahead doing all you can to regain your health and stay healthy. There will be bad days and days when cancer isn't on your mind 24/7. It's a hard road head but, you will make it over to the other side. Most likely you will be doing chemo and radiation. When you get your start date look on the site and find the group starting a the same time. I wish you the very best. We are all here for you
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Hi Susie. I think at this stage the oncotype really doesn't matter, being triple negative. As you said these are always aggressive tumors, but the bright side is they can be cured and usually have good response to chemotherapy. So don't be too disappointed with that perspective. Of course its scaring. I can't give you much advices but I can tell you what i am glad I did - placing a port (made treatment much easier and less painful), - using a cold cap (lost less than 50% of my hair and felt normal during the treatment and it helped me and my family to do thngs normally without having to talk about the disease unexpectedly while going out), - learning something about makeup (how to use eyebrow pencil and eyeliner), - reduce stress and obligations (i paused work... ir was driving me crazy and I think the stress stress contributed to the disease).
Chemotherapy wasn't as bad as I imagined, but it is different for each of us. When you know what you will do let us know if you want and will try to help. But as far as rhe hair is concerned i think it really does fall... so be prepared as almost every women reports it as one of the sadest things in this process. Andif you don't use a cold cap to prevent hair loss think of wigs, hats... anything you like and enjoy.
Stay strong and hopeful. You can do this
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Hi all, I am way behind on the thread, I will go back and read later, but I wanted to say to Curly and Al your grans are gorgeous! the BEST LOVE EVER comes from those grandbabies!
I think newbie Mike (HELLO MIKE) posted about his wife's mid December recurrance, not someone named Mid December....correct me if I am wrong there Mike, this was your wife, right? just want to be sure
And to all the newbies, welcome. We hope you find this site to be a soft place to land.
Have I missed any news on Annie?
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Hi I had 4 chemo treatments of a/c. Every other week. I did pretty good with few side effects. I have lost my hair and tend to wear hats rather than my wig. Next week I will be starting my next bunch of chemo treatments. 12 taxol and in a carboplatin trial. Then 14 radiation sessions. Were any of your lymphnodes positive? None of mine were. I think your treatment plan also depends on on your stage. I am stage 2. I had a few tests before. A bone scan, an abdomina ultrasound and a CT scan. I live in Canada so it might be different.
Wishing you all the best in your journey. You will get through this!!
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Yes, Tamoxifen failed and her cancer turned to triple negative with many small mets to the spine. She's on Xeloda, with SE's not real bad, well, except for the usual hands and feet thing.
Since retiring I've taken up art. Also, it relaxes me what with all her cancer problems and my worry level at 100%..
Mike W.
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Mike W, beautiful
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Cathytoo I read your signature but I did not see any radiation listed. Did you do that or not? I know what you mean about too much internet, I feel overwhelmed with information and it's scary. Thank you for responding and understanding answers.
SCM12 I haven't read or heard anything about a cold cap so I will definitely look into that. I am very nervous about losing my hair, I bought a wrap just to try it out and I ripped it off thinking I can't do this! But I have no choice do I? I'm not very good at make up so I'm afraid if I try eyebrows I'll look like a clown! Thanks for all the great advice I will be following this page even if I don't post often!!
LJBrost my lymph nodes were clear. I'm a stage 1 . I'm assuming the stage is based on the size? Mine was 1.4cm. I hope I get some scans before chemo just to make sure it isnt anywhere else. Did you have any side effects besides hair loss due to chemo? It's good to know someone who is on this journey paving the way. I thought after the surgery everything would go quickly and I would be back to normal by August. But after reading about ports and chemo then radiation this could take a long time to beat. Trying to stay positive!
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Susie, yes, you can check into cold caps and hopefully will keep enough of your hair to be comfortable. I was supposed to use them but Hurricane Matthew came though and there was not a piece of dry ice to be found so I couldn't. Losing my hair was the hardest part for me.
As far as side effects, I think it varies a lot from person to person. I had a lot of issues but wasn't sick to my stomach as they prescribed 3 different nausea drugs with detailed instructions on when and if to use each. I had what they believe was a reaction to Neulasta and high fevers from that. I also had issues with low platelet count which was caused by the carboplatin. But I wasn't nauseous which was my biggest concern.
Radiation has been easy for me. I have 6 out of 31 treatments left. I'm looking forward to this ending.
No one could have been more fearful than I was. While it hasn't been a picnic, it almost certainly won't be as bad as you may be expecting. You can do this!
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Mike, wow, what a beautiful painting. You are very talented. Give my best regards to your warrior wife.
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Welcome Susie. I met a stage 1 TN lady in my neighborhood this weekend. She didn't take chemo, just 4 weeks of radiation, including boosts. I always thought that onco-typing was only for non-TN cancers. The ki-67 test is what tells us how aggressive ours is. The arm soreness will pass, although I still get pains in and around my breast. If you do have chemo it will most likely be ACT, which does cause hair loss. You can try cold capping, but there will still be at least some hair loss. Hoping you don't have to worry about that though.
Before chemo, I had a CT scan, a heart scan. You have a blood test before each infusion too. I had four doses of adriamycin and cytoxan, and then twelve of taxol. Six weeks of radiation, but I was stage two. Ask any other questions you have and one or more of us will answer for you. Hang in there.
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Susie, everyone has different side effects to chemo. I had constipation with AC, then the opposite with taxol. I have chronically low white counts even without cancer, so I had to give myself neulasta injections after each infusion. That was my thing that I didn't think I could do. But I got used to it, even if I didn't like it.
I found a wig I liked, so the hair loss didn't bother me as much as did the loss of my eyebrows and lashes. When I was at home, I wore a Buff on my head like they wear on the tv show Survivor. I used a pencil for my eyebrows and liquid eyeliner to disguise the fact that I had no lashes.
I also kept a health blog for my friends and family. It was easier to write it once than to have to answer the same questions over and over. Plus, I could go back and read it to see how far I had come.
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The center were I was treated had what they call a scalp cooler. It works like a air conditioned unit and this option was proposed to the patients with breast cancer undergoing chemotherapy (it can't be used in all types of cancer). Insurances don't pay for that but the price is on the overall similar to a good wig (and hats, scarves etc altogether). From the posts I read I think in the states it is somewhat different - women buy a cold cap to a company and have to take it to treatment along with packs of ice... Either way the medical studies are demonstrating that it is safe to use and that it works so ask your oncologist (sometimes they don't give enough attention to what seem details...), look in other threads and google it to find out what exists near you.
My eyebrows and lashes also fell, but it was some time (1 to 2 months) after the hair (in the areas the cap didn't fit so well it fell but no-one could see them). It made it easier. I thought I wasn't that good with makeover either but i found it to be easy. Start learning now - use pencil to counter the eyelids and a corrector for the eyebrows (I bought one from the brand benefit - pencil in one side and brush in the other). If and when they fall you already know what to do...
During AC I lost hair but during Taxol it was already regrowing and my eyebrows and lashes were falling... Now 8 weeks PFC the hair is good, my eyebrows came back and one of my daughters says I have baby lashes...
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Connie123 I dont like to be cold so losing the hair may be my outcome. That is going to be hard for me but it's just hair, at least that's what I keep saying to myself. I met with a RO last week and he said I will have radiation after chemo But instead of doing the traditional radiation we will double the dose and do 16 sessions to the whole breast and 4 boosters to the tumor site. Sounds great cause it cuts the radiation treatment time in half!
LoveMyVizsla My pathology report didn't have a ki-67 score which confused my RO and MO. According to my biopsy report they claimed i was a very weak positive ER, but when we got the pathology back it was clearly a triple negative. That is why they did onco scoring. I have been told I have a very aggressive tumor and onco didn't need to be done. But since it was ordered we waited for score. I look forward to the constipation because i have celiac disease and diarrhea is a daily thing. I used to take 6 Imodium a day but now I'm taking 2 daily.
SCM12 I suppose I'll start playing with the make up, see if I can perfect it. I jokingly said I'll do one eyebrow up and other down so I always look like I'm questioning people!
Thanks for all of your input and help. I know I'll be back posting tomorrow. I see my MO at 2p.m. and I'll have a treatment plan!
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Connie123 I dont like to be cold so losing the hair may be my outcome. That is going to be hard for me but it's just hair, at least that's what I keep saying to myself. I met with a RO last week and he said I will have radiation after chemo But instead of doing the traditional radiation we will double the dose and do 16 sessions to the whole breast and 4 boosters to the tumor site. Sounds great cause it cuts the radiation treatment time in half!
LoveMyVizsla My pathology report didn't have a ki-67 score which confused my RO and MO. According to my biopsy report they claimed i was a very weak positive ER, but when we got the pathology back it was clearly a triple negative. That is why they did onco scoring. I have been told I have a very aggressive tumor and onco didn't need to be done. But since it was ordered we waited for score. I look forward to the constipation because i have celiac disease and diarrhea is a daily thing. I used to take 6 Imodium a day but now I'm taking 2 daily.
SCM12 I suppose I'll start playing with the make up, see if I can perfect it. I jokingly said I'll do one eyebrow up and other down so I always look like I'm questioning people!
Thanks for all of your input and help. I know I'll be back posting tomorrow. I see my MO at 2p.m. and I'll have a treatment plan!
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susie 2017...I did whole breast radiation. 20 treatments which also included boosts
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Mike...absolutely beautiful‼️
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I only had TC 4 rounds as well.
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Suzie2017,
Sorry you are here but you came to the right place. There is so much information available on breastcancer.org that you will easily get your questions answered. TN is usually a Grade 3 which means it is aggressive and chemo is the #1 defense against it. Most people have surgery (Before or after chemo) and radiation. All of this is doable although it seems daunting. The pre-tests depend on your Doctor and the stage you are at and other factors. Ask your Doc these questions!!
I had an echocardiogram to determine if my heart was strong enough for AC chemo and it was. I finished that and am 7 down of 12 Taxol treatments. A lot of TN's get this protocol. I suggest looking at the chemo boards for information on helping with side effects but I will share my main side effects were GI related. Constipation with AC, so get WAY ahead of that with laxatives.
Arghh! And with Taxol, it has been heartburn which is a non issue with Prilosec (Costco brand.) Fatigue is normal but we are stressed and fatigue is a by product of that anyway. I still exercise daily and do everything I did before. I have never really felt that bad although SE's vary from person to person. I did take Zofran every 8 hours while on AC for a few days and never have had any nausea throughout this. The RN's at the infusion center will have great tips for you on side effects as well but the chemo boards here are a great resource to plan ahead and really helped me feel prepared. Chemo is not anywhere near as bad as I feared. Some chemo induces hair loss and you can find that information out from your MO or google it to see the drug description. I am cold capping so have not lost all of my hair. On AC, there is hair loss with cold capping but most women keep 50% or so. I am using Essential Eyebrow Solutions on my brows and they still look great. A few eyelashes are gone, Latisse will not help keep them but I plan to use it after chemo to stimulate growth. Our self image/esteem is difficult to maintain during this so these are things I am doing to help with this and it is working. I still go out in public and no one knows I am on chemo. Yea! The Rapunzel Project has a nice list of all the cold cap companies if this is something you decide to look into. I found it myself when researching after initial diagnosis.
I also got a port put in and am glad that I did. I am getting 16 infusions and 16+ blood draws. This takes the strain off my veins. The surgery is very easy and I worked in the afternoon afterwards. My LX was pretty easy too. Your muscle strain issue will go away in time, the underarm can be tender but in a few weeks that will be gone I am guessing.
Feel free to ask more questions or PM me if you like!
Anne
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Have I missed an update from Cocker (Annie)? She's been on my mind so I was hoping to see something from her. Thinking of all currently in treatment. Just keep putting one foot in front of the other. As I get ready to go out of town for a country music festival with my husband, I can tell you that I continue to feel so grateful to be able to do these things. Definitely not taking life for granted as I try to enjoy every moment of it. Hugs to all!
Kathy
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Hi to everyone! So sorry i haven't posted in awhile. Had alot of catching up to do reading the posts. To all the newbies I'm so sorry you find yourselves here. There are alot of amazing people on here and you will find alot of support here.
Has anyone heard from cocker? How is she doing? Really concerned about her as i haven't seen any posts from her or her daughter. I'm in her pocket and praying for her as well as all of you!
I've been so busy with trying to get back to driving after my amputation. First off i had to take a driving class that lasted about 30 minutes and cost $350 thank god i passed...lol. I had to take a paper to oncologist to fill out so i can send to DMV. I picked paperwork up from Dr yesterday. Will mail to DMV in monday. I also checked on prices to get my car modified which costs $2225 for a spinner knob with blinkers, wipers, and lights on it. My dr told me to call medical insurance to see if my plan covers the modifications. I called insurance they said I'm no longer covered by them. So i called the Cleveland clinic cause they are paying my cobra. He told me they mailed payment Wednesday so i will call insurance next week to see if i'm in the system. Today i got a letter from my prescription mail order that said they were no longer my provider. I sure hope this gets in system soon cause i have prescriptions i need filled. I've been going to therapy for the phantom pain. I have to play this game on my phone that shows hands and i have to pick if it is a left or right hand. After playing game i start hurting. Therapist says that it is normal cause the brain is learning to accept that the arm isn't there and it's ok that the arm isn't there. I just try to stay busy so that i forget about the pain. I planted 55 flowers a few weeks ago! My cousin threw me a fundraiser on the 10th and we all had a really good time! My boyfriends sister is also having a fundraiser for me july 1st. It's so great having thoughtful and caring family and friends that are going out of their way to help me.
Everyone stay positive and strong! I believe that really helped me and made my treatment alot easier.
Love, hugs and prayers to all!
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Hi again! I forgot to mention i had a post op appointment with orthopedic surgeon. He is really impressed with the healing and my progress. I get ct scan on the 23rd.
Meadow how are you doing?
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DIV.....YOU ARE TOTALLY AMAZING AND SUCH AN INSPIRATION‼️‼️
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