Triple Negative Stage IV
Comments
-
hi all. My mom diagnosed with stage 3 tnbc in May 2015.She was doing good until now but on her first cat scan that was on june 2017 there was a 4mm nodule on her right lung.On the follow up of this nodule her onco ordered her a PET/CT that was on jan 2018. Now they found multiple small sub centimeter pulmonay nodules on her both lungs.Her report said:FDG avid and Non FDG avid Ground glass bilateral lung nodules are found on both lungs suspicious of metastatis.There is a spot on breast which has suv of 6.3 indicating residual or reccurent disease.
I am terrified now please help me i am her 20 year old son and i have two small sisiters 8 and 15. My fingers are shaking while writing this.please help me please.Is this means her breast cancer has moved to her lungs also the spot on her breast also lit up that was scar tissue.Breast nodule that was lit up has SUV of 6.3.
0 -
Katie420, I am glad you are reaching out here. This is understandably a very worrisome time. I am guessing that your mom will be having a biopsy to confirm mets dx and see how the cancer may have changed. TNBC changes to her2 positive about 30 percent of the time which would open up even more tx options. Have you talked with her about what next steps are? I am completely unfamiliar with lung mets only having liver mets myself. I would make sure you let your mom know how much you care and ask that she keep you in the loop regarding everything that is going on. Obviously metastatic disease is very scary and nobody wants to be affected by it, but keep hope. There are many effective treatments that will keep her with you and your sisters a long while. My thoughts and prayers go with you. Keep us updated on what you find out.
0 -
Thnq kayborg for taking time for me.I am really confused crying.I dont know what is before us ,my world is shattered,my life doesnt seem anything for me now.I am studying for my mom.I want to become something for her.Please any have lung mets can come forward and show me the path for further treatment please.
0 -
Katie420, many treatment options will be similar regardless of where mets are. The first step is to have a biopsy and Foundation One testing if possible to help point to the best treatment options for your mom's particular cancer. Chemo is the only standard care option for TNBC but there are many good chemos for us and TNBC responds better and faster to chemo than other bc types. You should also look into immunotherapy trials as these are showing good results for TNBC. If your mom is brca positive then PARP inhibitors would be great to try. Olaparib is one that was just approved for standard care.
The time of diagnosis is really one of the hardest times. It does get easier and life can feel quite normal once an effective treatment is found. Hang in there and continue to ask any questions you have. Does your mom have an appointment coming up soon?
0 -
Yes kaayborg tommorow we will meet with pulmonongist.Also there is a new primary at her lumpectomy site.I want to ask if they will operate her new breast mass out??
0 -
Hi! Hoping this is the right way to post my story and get/give support. My name is Rachel, I’m 35, married, daughter born 10/13/15 (she’s perfect in every way possible) and a five year old dog I treat like my first child. I do my best to spoil my family. It’s what makes me happy!
When I was six months pregnant I found a hard lump in my right breast which I though was milk duct related from pregnancy. First time mom and all I had no idea it could be something else. My doctor did an ultrasound and said it looked like a cyst but “not the bad kind”. We would take another look after childbirth. I thought, ok great! On with my healthy pregnancy! I delivered a beautiful little girl on 10/13/15 shd have been completely in love ever since. A couple weeks after I had a biopsy done on the growing mass in my right breast that confirmed on 11/13/15, exactly four weeks after she was born, I had breast cancer. Everything just sort of stops spinning. I look at this beautiful newborn baby and wonder if I willing ever get to see her grow, know her little personality, will she remembers her mommy and how much I love her? It’s heartbreaking, and you only know this feeling when you have been there too.
One week later I had surgery to get a chemo port placed. First time in my life I have ever been put to sleep or had surgery. Pretty simple and quick so never fear this! One bit of great news is I tested negative for the BRCA gene so my daughter is at lower risk than if it had been positive. Thank you!
I started a trial chemo drug called Cisplatin in December of 2015. I had four rounds a dose once every other week. I did not lose my hair, it made my face very red and I slept for a day or two. By the end of the first week and the whole second week I felt like myself, very good and could take care of my baby!!
With all the chemicals flowing through my body I had to abruptly stop breastfeeding of course! The switch to formula went well for my baby thank goodness, but for me...i developed an infection on my right breast which is not good for someone on chemo. My husband and I spent a week in the hospital in February of 2016 fighting it off. Thank goodness for my mom and sisters who came to my rescue and watched my baby so he could stay at my side in the hospital. Family is a blessing like no other to me. Friends and family are what get me through these times. By March of 2016 I was ready to start AC chemo, also know as the red devil. I had heard many horror stories about it and was pretty scared. I cried the first time getting that chemo and the nursers truly are the kindest, best ladies there are. Chemo nurses deserve some kind of honor or special holiday/vacation each year for what they do. Truly. The first night I felt pretty rough. Even with all the nausea meds, neulasta on pro body injection and meds, I still felt pretty sick and slept for three days. After that first time though I have to say it got easier.
I woke up one night after the second round of AC with a fever and spent another week in the hospital fighting an unknown infection. I look back now and think I was having a reaction to the nuelasta on body injections but I do not know that for sure.
The AC did make my hair fall out but my mom had bought me really cool wig that looked just like me! I started playing with make up a lot and could make myself look and feel pretty good!
By May of 2016 I was done with the red devil and ready to start Taxol which I had heard was much easier Chemo (if there is such a word).
After six rounds of that, my oncologists discovered that my tumor was not responding to rose treatments and was in fact growing. It was time to stop chemo and get into surgery.
On 06/24/16 I had a radical mastectomy of my right breast, 14 lymph nodes removed, my pec major removed and a skin graft of my right thigh to help cover my chest. I spent three days in the hospital and went home with two wound vacuums.
Recovery was long but by August I went to the beach with my family!
In September of 2016 I had completed 30 rounds of radiation to my chest and returned to work! I was convinced I had beat cancer and that part of my life was over!
I’m October I celebrated my daughters first birthday!! What a joyous celebration and I was there! I’ll never forget the way she looked that day.
Life went back to normal, I had checkups and felt great.
In December of 2017, I started having spasms in my right leg which left it numb. During my routine check up with my oncologists I mentioned this and he scheduled an MRI of my brain to be on the safe side. The MRI confirmed our fear, multiple brain tumors and one large enough to cause these symptoms in my right leg which needed immediate surgery. Here I was, one week before Christmas and we find out the cancer is back, brain surgery needed now, and we’ve got to check and see where else it could be. Everything stops spinning again and at a sudden instant. My doctors start me on steroids immediately to reduce brain swelling and these meds will make you a complete crazy person. Emotions are wild, eat 24/7, face and belly are like hot air balloons! But they save your life!
On 1/5/18 I had a tumor removed from left frontal lobe. Two days later I was back home with my family and have been recovering ever since.
I went Friday to have a CT scan of my body and a full bone scan. After leaving the scan my oncologists called me right away, which is never a good sign. He was informed I had a blood clot PE on my right lung. My husband and I were terrified! I asked him, am I going to die in the next five minutes? To which my doctor replied, I don’t know! Go to the hospital now. A wave of calm came over me. This would not be it for me. That was not the last time I saw my daughter. I was going to see her, hug her, kiss her again. We drove back to the hospital where I completed my bone scan, yes, I went ahead and had the scan, laid there for 30 mins still as could be knowing I had a clot in my lung and potentially another. After leaving the bone scan my doctor had scheduled an emergency ultrasound of my legs to check for more clots. They found one small clot DVT in my right leg but it was not a complete blockage so I was sent home. I cannot start blood thinners yet as I’m two weeks post brain surgery. I am hoping to start them today. I guess when you are faced with sudden death, the reality of fighting for more months or years is put on the back burner. It’s very surreal.
Since my doctor had to call me about the clots, I was able to ask him if the scans showed anything else to which he could confirm they did. I have multiple tumors on my lymph nodes, lungs and liver. Ranging from 6.8cm, to 4cm to 2.9cm and so on. He was not able to discuss them further since it had just been read.
Today I go see my radiation doctor and it will be decided if I can do radiosurgery or whole brain radiation to take care of the other multiple small brain tumors I have. I will be fitted for the helmet for radiosurgery if all goes well. After that I see my oncologists to discuss the other numerous spots in my body. Am I treatable? What is my outlook? Will I see my daughter turn 3? 4? These are thoughts that constantly run through my head.
I want to be hopeful and I will do anything to be here with her longer. I am a fighter and I love so very much! Please talk to me, tell me I have hope and there are treatments for women like me that will work! I am here for you! You can do this too!
We’ve got this together!
Love and Peace,
Rachel
0 -
Rachel-I am sorry you are going through this. I'm thankful you have a good support system and your lovely baby girl. I was diagnosed stage 3 TNBC in April 2017 and then stage 4 in July 2017 with mets to the liver. I've had the red devil, taxol and now I am on gem/carbo. I never had surgery or radiation. Sometimes the cancer can change to HER2+ and that gives you more options. Is your onc confident that it's all TNBC? I have no great advice other than question everything. You are your best advocate. We are all here for you and I will send love and light to you and your family.
Kay
0 -
hi everyoneMy mom is having mammography because her pet scan lit up in her breast.Also the FDG avid and non FDG avid lung nodules can not be accessed with needle biopsy.
My question is that they do lung biopsy to tell about mets or they can do only on the basis of pet scan only
My mom has atleast 14 ground glass nodules on both lungs.
0 -
hi Karina,
I was originally on gem + carbo - and my hemoglobin were so low I was just really struggling. My genomic testing came back (7 months later) and shows that I have a mutated gene that makes me sensitive to carbo. So my MO cut out the gemzar to see if it makes it easier on me.
I’ve had one dose of just carbo thus far, and I’m not sure if it’s better or not. I am still very fatigued but I never know if maybe that’s from lack of conditioning from not doing a lot.
Getting a port put in Wednesday as my veins are officially shot after a year of treatment.
I have not lost any hair on my head from carbo or gem!! I’ve noticed my body hair has thinned majorly (don’t need to shave my armpits very often!) but my head hair is perfectly in place.
Good luck! Let me know if I can answer any questions you have
0 -
Hi! Thank you so much for the reply! My doctor sent off the tumor that was removed from my brain this month and they are testing it to see exactly what it is and if there are other treatment options. We should have those results back in a couple of weeks.
I got fitted for the SRS helmet Monday and will start radiation for the 13 brain tumors on 2/01/18. I’m happy to get that going!
My onc said I’d probably start gem chemo right after radiation is done. I hope it works as when I the other three chrmos before the tumor only grew. I’m praying for some result that the tumor shows I have more treatment options.
Thank you for your light and love and response. It means so much to me.
0 -
Rachel
So sorry for all you are going through. I have had 7 cycles of carbo and Gemzar and am doing fine on it. After the 5th cycle I started neulasta to keep my wbc count up. You usually don’t lose hair on this combination, some people experience hair thinning but I have not noticed that. Some fatigue and constipation.
Keeping you in my prayers
0 -
katie420: I am notsure about whether they can dx cancer with just the PET scan results or need biopsies.
Keeping you and your mom in my prayers.
0 -
update on my tumor marker: my CA 27.29 tumor marker is down to 143! AMAZING. it started at 3580 which is extremely high. High normal is 40 so i really had a lot of cancer in my liver. Carbo/Gemzar has worked wonders. I coninue to pray that it keeps working. My onc does not think she will get me to NED but at least it will give me quality of life and a longer life. I have had 7 cycles so hope I don’t have a reaction to carbo. They say usually if you are going to have a reaction to platinum drugs it will be between dose 6-8. If that happens hopefully they can give me more premeds if carbo still working so I can continue on it.
My next MRI is feb 8th so hoping for a good report with shrinking of tumors and less cancer. This is such a roller coaster ride waiting for test results each time. Mentally I am so up and down. Trying to stay positive each day and look for positive blessings in my life
I praise God for my healing and leading me to a great care team.
Praying for all of you.
0 -
Kayyborg: I think you said you did not have BRAC MUTATION but did you have other mutations? I have the PALB2 mutation which is close to BRAC line. My onc says that PARPs probably would work with me with this mutation. Maybe something to check out since olaparib was approved for treatment by FDA.
0 -
Thnq Hartrish.We are on wait and watch terms but it makes me more insecure because my mom is going for a biopsy in the same breast which lit up in pet scan.I am very frightened abot her lung nodules all of them are subcentimetric but in both lungs.I dont know what they are going to do.I am really scared for my mom.
0 -
Katie, I have one met in my right lung. They did a needle biopsy guided by CT scan, but they did remark that some nodules are too small to biopsy even with the CT help. I had an enlarged lymph node that subsided later (I had pneumonia around the metastatic tumor), and they said I had some small calcified spots in both lungs that the radiologist called "ditzels", which is radiology slang for "probably nothing". LOL. She said most folks pick up the odd ditzels just from living - pneumonia, bronchitis, mild smoke inhalation - basically anything that might cause a small bit of damage to your lung(s). It is essentially a small scar or calcification and usually doesn't mean anything. So try not to worry too much about small spots in your Mom's lungs - unless the doc is concerned. It's hopefully just a ditzel.
0 -
Thnq riley.The main problem is a spot lit up on my mom's pet/ct of her remaining breast.It is approx 2cm and had a high SUV of 6.3.Also the lung nodules showed mild fdg uptake on pet/ct.
This means there is a strong possibility of reccurence in the same breast.Also th lung nodules which mildly lit up are suspicious of mets which her pet/ct report says.
0 -
hartrish-I am so happy the gem/carbo is working for you and I believe you will have good results on Feb 8.
kaayborg-How are you doing? Can you check in with an update please?
0 -
Hi all, thinking about you all and all the time. Has anyone seen this article in the news
https://med.stanford.edu/news/all-news/2018/01/can...
Hugs to all hang in there, may be there will be a breakthrough soon 😁🤗🤗🤗
0 -
4everstrong: saw the news article yesterday. Wish they would open the clinical trial to other disease types instead of just lymphoma. Seems to take so long to get new therapies through trials and approved by FDA. hopefully it will work in humans the way it worked in the mice. Thanks for posting.
0 -
Hi all,
I am not triple Neg, actually Her2neu+++, but my recurrent tumors in my chest are somatic BRCA2 positive. Waiting to see if my chemo center can get grants to pay for the co-pays for Olaparib.
I started a thread asking if anyone is on Olaparib, but no replies so far. Hope to get some feedback.
I am a 16 year survivor of Stage 4 BC and have been on chemo the whole time.
Was on Kadcyla for 4 years, until it recently quit working. Then lasted for 8 days on a clinical trail of Poziotinib, which was horrible.
Denise
0 -
denny123: I have not been on Olaparib. Still on carbo and Gemzar
0 -
kayyborg: give us an update. Thinking about you
0 -
Hartrish, so much going on it's hard to update all of it. Here's the gist. Horrible discomfort in my big fat pregnant abdomen (full time maternity gear now and constant questions from students when my baby is due, boy or girl, etc.) and then lymphedema making for big fat painful legs. Switched to morphine 2x daily and abdominal discomfort is improved. Added compression stocking and physical therapy and legs are much improved but nothing is perfect. I am quite weary and sometimes I want to hang it up but no, not really. I am absolutely not ready and have more treatments to try. It is time to try them. Will likely switch to abraxane or gemzar/cisplatin tomorrow. Had scans again as a baseline for new treatment and will know results tomorrow. I do want to live til spring to try IMMU132 as it is my best chance of getting a good reduction in tumor size so I can live in better comfort.
Kaylynne, I'm responding here though much of what I read about you and your upcoming decisions is coming from the liver thread. I don't believe at all that you've used all your big guns. I am prone to think you need to try another chemo to get things to settle down before hassling with trials again. Many on the liver thread tout immunotherapy as some great promise for tnbc and it is definitely a must try as it yields long term results when it works. However it works for only 10-15% and that is as lower response rate than standard chemos and it takes longer to see results. I took my chance with Keytruda but I don't think much is going on. It may be keeping me stable but that still is unclear. I would ask your onc about starting eribulin while you seek insurance approval for compassionate use of Keytruda which you can add to the eriibulin in combo later for perhaps a better response. That is what I tried but eribulin stopped working by time we were just one cycle into the Keytruda/eribulin combo. Find something to help until spring. Then we can give IMMU132 a whirl when on the market. If you search for Keytruda/eribulin in tnbc you can read the study results. They are decent.
All for now. I fear we have lost Texasrose. Uhhh...so sad. I just hate this whole situation.
0 -
kaayborg: great to hear from you. How are you working through all of this? I could not do that. I am praying and thinking about you and everyone else on the board.
I have my mri of abdomen and ct chest this Thursday. Hoping for positive results.
0 -
pettyr22: how are you doing?
0 -
kaayborg, thanks for the reply. Bless your heart. What grade to you teach? I meet with my oncologist on Thursday and Eribulin was on my list to discuss with her. Let us know what you decide for your next treatment. How do you know we lost Texasrose? It's been awhile since she has posted but God please don't let her be gone. I don't mean to be a downer but these last few weeks have been disheartening.
0 -
Teaching first grade. They have been very good to me. I've decided to try gemzar cisplatin combo. Hoping it gives a good punch and lands me stable in a safer , more comfortable place but it will likely be hard on counts and we'll have to adjust. Scans still show stability but symptoms not so much.
I don't know Texas is gone but it is unusual that she hasn't replied and she wasn't doing well when she last posted. This kind of disappearance has happened before with others on this thread. Hopefully she is okay. Hate not knowing.
0 -
kaayborg: praying Gemzar cisplatin combo is the answer. I bet first graders are fun to teach.
0 -
Kaayborg-First grade, how fun! My youngest granddaughter is in pre-K and the oldest is in 2nd grade. Both are really smart but they are both very stubborn and tend to get pink slips on a weekly basis. Here's to hoping they outgrow it. Cheers to the gem/cis combo. Let's pray it gets you through several years.
hartish-I am praying you have great scan results today!
I meet with my oncologist this afternoon. Anxious to see what she recommends. I just want it to go away.
Kay
0
