Triple Negative Stage IV
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Hi Ladies,
Well I decided to do the pill Xeloda and started it today. So far so good. My MO said that either were fine to try and both had good results. So I wanted to try a standard treatment as I had already been on a study trial and kind of needed a break. The trial would have me back in Seattle once a week and I really needed to have a break from that. So she said we could do this for now and then the trial would be an option later.
The trial was with Erubulin as well so I have the papers and read about it and compared them and just prayed about it. I am happy with my choice and looking forward to seeing what happens. It's all in God's hands and I my trust is in Him.
My day went well and I didn't feel anything different. I was a bit tired but it could have been cuz I didn't sleep well as I was a bit nervous starting a new drug. I didn't really feel hungry today so not sure about that as I don't believe it is s se. But I did force myself to eat so it will work. Tomorrow I am hoping to go to Curves and get my exercising in daily, I missed it today but didn't want to go today.
Hope all have a great day tomorrow...blessings...Lucy
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Lucy - good luck with the Xeloda. I think it is a one of those that all of us will probably get at one time so please keep us posted about se. Hope it is gentle on you.
I got the results of my brain MRI and I've had a good, but not total, response. There are 3 lesions left but very reduced in size, 0.8x0.9 cm, 5 mm, 3 mm. My rad doc called today and said he wanted to do a "boost" on those spots tomorrow. I said yes, but have a call into my onc because I finally chose a trial I want to get into at UAB (Birmingham). I am scared that this may delay getting into the trial because one of the requirements is that the brain mets must be stable and off steroids for 3 months before entry into trial. March 24 was my last steroid, so hoping this "boost" doesn't require any more steroids. EDIT: My onc just called and said I will not be doing the boost tomorrow because I would have to go on steroids again and it would delay the trial. So, we will wait and do another brain MRI in a few months.
I am really excited about this trial. One drug is Veliparib (PARP inhibitor that many TN mets women are showing promising result on) and Lapatinib (Tykerb) which is approved for skin cancer but is showing promise for TN as well. I had my genes tested by Foundation One, and Lapatinib was one drug they recommended trying because I over-express EGFR. This trial only allows 2 prior treatments in the mets setting. I have had two (Taxol & cisplatin) so if I go onto another/different treatment, I would be ineligible for this trial. This is my last chance to get into it!
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Hey Cat,
So far my 8 days on the Xeloda have been going well. The se's are hand and foot syndrome but nothing major yet. I have noticed after an hour or so of taking my pills I have a slight tingling in my hands and fingers but it goes away after a couple of hours. I have to keep my hands and feet moisturizer at all times to lessen the soreness. On occasion I have noticed that if I wait too long to at or drink I get a little queasy. Not really nausea to where I feel like throwing up but just queasy. So I have a light snack and drink a bit and then I am good. So they said to eat something light every couple of hours so that has helped. Sometimes just water is good enough. Have had some fatigue off and on as well. On day 2 I had a couple of mouth sores but did the rinse with salt water all day and the next morning they were gone.
Had a good appt today for my followup after a week. So we shall see what week 2 holds in store.
That's great you have a trial to participate in. I just got off one as they found two lymph nodes with the stupid disease. So off the trial and waited two weeks for a washout then started the Xeloda. I had a choice of another trial with one drug but it was a weekly treatment and I was just needing a break from the past year and a half so I chose the pill. The MO said they were both good choices and neither was a better choice than the other.
So maybe we could talk on the phone sometime. I would love to hear more about your journey. It is too bad there is not much activity on the board.
We'll have a great rest of day and week if I don't hear from you.
Lucy.
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Lucy- glad the Xeloda is not too bad so fa r and a good checkup. I am not in a trial yet. I have an appointment next Tues to talk to the onc of the trial to see if it looks like I will qualify. I don't blame you about wanting to take a pill. If I get into the trial, the 2 drugs are both pills and I would only have to go for a follow-up visit every 8 weeks.
Ask away if you would like more info on my journey. I wish the website would have a way for us to add the drugs we are getting outside the common drugs. I would like to see what everyone else has tried.
I have had a rough couple of weeks so haven't been on here. Been running 102+ fever, nausea and vomiting. I don't know what caused it but suspect getting off of Effexor plus getting chemo. I was severely dehydrated so have been getting fluids every day. I also started an antibiotic in case I have a sinus infection because my ear has been hurting. Today is the first day my temp has stayed below 100. Hopefully, I am on my way to recovery.
Hope you have a great week.
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Cat, I have heard that before about some trials, that sometimes you can only have 2 or 3 other chemo's before. Looking into trials is one of the things I haven't gotten around to yet. I am still on first chemo, I think. I say I think because I was on Carbo/Gemzar and then dropped the Carbo and continued on just Gemzar. So I wonder if that counts as 1 or two?
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Hello Ladies,
Hope all are doing well. Cat let me know how you're doing.
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How is everyone doing ? I am struggling with the depression. Don't know what I would do without my son who keeps me positive and encourages me to fight. Barbara
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Hugs to you, Barbara!
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thanks so much and to you. I have my next scan coming up in a few weeks so the anxiety is rising but before that I going on holiday with the family which we haven't done for 5 years so that will be good . We are going to Galicia as I always wanted to go to Santiago de Compostela. I am not sure what the kids will make of it but we will see .
Hope everybody is doing well. Love, barbara
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Happy Mother's Day! Enjoy your day Ladies!
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Hi all,
I don't visit the boards much, but I wanted to give you an update.
Next month will be six years living with a stage IV diagnosis, with extensive mets. In February 2014, I was declared NED and taken off of treatment. On Friday, a PET scan confirmed ongoing NED status. So, I have been NED for 15 months.
I wanted to share this in order to share hope.
Lotusblossom
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A big congratulations and thank you for the hope and encorougement you give to us all
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lotusblossom, Thank You and congratulations! I am so happy for you to be NED. You have shared far more than than hope, you have shared the possible. That makes my heart sing. Enjoy this glorious day. Cheryl
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Lotusblossom, thank you and congrats!!
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Lotus that is so awesome and we are so happy and rejoicing with you. That is absolutely hope and promise for all of us.
Please do check in again as I would like to know where you live and maybe you could PM me. I would even love to chat on phone if you're interested.
CONGRATULATIONS!!!
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Lovely news, Lofusblossom! Lovely flowers, Beachbum!
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Hi to everyone. I'm having trouble getting my profile to reflect everything that has gone on. Was originally diagnosed triple negative in April 2013. Underwent dose dense AC/T, surgery and rads. In November of 2014 diagnosed with a 5 cm brain tumor, had surgery and cyber knife rads. Feb of this year more mets to mediastinum 2 lymph nodes. I just stopped taxotere after 4 cycles and switching to weekly taxol 2 on 1 off. Am hoping for less side effects ! I haven't been able to walk more than about 5 feet. I'm hoping to have more of a life with the taxol.
My brain Mri in March was clear, have another coming up in June.
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Hi everyone! I am new to this website and forum. My 62 year old mom was just diagnosed with triple negative metastatic breast cancer. She had a <2cm primary tumor (right breast at 7 o'clock) and 20 lymph nodes under her arm removed (only 3 were positive for cancer cells). The pathology report from the surgery indicated that lymph vascular invasion was present. Her cancer was considered grade 2 from the core biopsy report, but is now grade 3 from the surgery report. Since the surgery, she has had a full-body CT scan & bone scan of her body. There were no mets present, except for one spot.
The oncologist told us that a spot was found on her L4 pedicle that had a high uptake, which makes them suspect it's metastasized cancer from the breast. She has no physical symptoms of this (ie. no pain). Therefore, she has been diagnosed with Stage IV metastatic breast cancer - without treatment she has maybe 1 year, with treatment maybe 2-3 years as the cancer is extremely aggressive. The oncologist felt that it had been present for less than a year before it was caught.
We certainly didn't go into that meeting expecting to hear that. It was quite a shock to us all & quite frankly, still a little surreal as she isn't showing any physical symptoms. Hard to believe the diagnosis when she feels fine.
She started her first dose of Taxotere yesterday and is still feeling pretty good. Just waiting for the other shoe to drop and have the side effects kick in.
Hello & warm wishes for everyone!
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Sasha,
You are a good and caring daughter. Keep up the good work, your mother needs you more now than ever.
It's great that she is asymptomatic! IMO that shows that your mom is healthy enough for chemo and that the size of the mets is manageable.
Take care.
Brenda
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Hi Sasha,
So sorry to hear your news of your mom. It is never good news and it is tough stuff to hear. I was dx 2 years ago this August and it is still surreal to me. I am stage IV as well and I am a strong woman of faith so I am praying for a longer life than 3 years. I have hope of more advance treatments for us with this type of cancer. I am on my 3rd type of treatment and still working and staying strong in the fight.
You are a good daugher and that is wonderful as this is such a tough time for your mom and all the support is so important. Stay in touch, I see you are from Canada and I am not familiar with the treatments there or if they are any different from us. Let me know...
Lucy
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Hi Adnerb & SpiritBless - thank you for replying to me. My mom had her first round of chemo on May 15 and it was more than we could have ever expected. Everything was manageable except for the muscle/joint pain. We were able to get her some codeine, which helped a little bit. She ended up in the ER with a fever and was treated with antibiotics. The ER doctor gave her something stronger for the pain and did an MRI on her spine. She has her next dose this Friday and I am hoping now that we know what to expect and when, it will be more manageable for her.
We did get some good news today though. The 'bone met' on her L4 pedicle is actually NOT a bone met. It's a lesion that is a bone density something or other. Her lumbar spine is completely clear. I'm not sure if that changes her diagnosis/prognosis at all - from Stage IV to Stage 2, but it is great news nonetheless.
Have a great Tuesday!
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Met with MO today who confirmed that biopsy confirmed recurrence to same breast & mets to bones (sternum & spine). Recommending radiation again & then chemo pills (Xeloda). I'm glad to finally get treatment going again as I've been waiting a month since chest CT & PET - can't help but worry that it has given TN way too much time to grow! Fighting this beast again, round two begins!
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Hi Ladies,
Sasha, so glad to hear the news of the dx change. I am not sure but maybe you are right that it does change the dx. We can only hope and pray for that news. Please make sure to post and let us know, it is nice to hear good stuff. This is such a horrible disease and anything good is great to hear and gives us all hope.
Lana, sorry to hear of your confirmation...shoot! I am on Xeloda as well and have been since April 13th. It is my 3rd treatment since my dx 8/13. I am still fighting and will continue to as I intend to be the poster child for the miracle I am expecting. Let me know if you would like any details or chat. Send me a private message and maybe we can exchange numbers. I would love to chat.
Have a great night ladies and thanks for responding. Lucy
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Wow crazy couple of weeks. Dcis left breast diagnosed in 2007. Inflammatory breast cancer right breast diagnosed 2012. Now it's returned triple negative stage lV right lung and bone (skull, spine, ribs, pelvis, femur). Started chemo Wednesday abraxane. Feeling positive but so much uncertainty. I'll be doing 3 weeks on 1 week off. I've got a beautiful little girl who's now 6, how on earth do you explain such things to them. Thankfully my support network are amazing.
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jlove, so sorry that the cancer returned and admire your spirit to fight! My own experience of having cancer returning is just a little longer than yours with mets to the bones (same areas except for the skull). Just in case, have you done a new biopsy on your mets? I think it is very important and necessary for every TN subtype case to do biopsy on mets, because the subtype of BC could change. Mine has changed from TN to ER+/PR+. HER2 remained the same negative. Hope you have very successful treatment!
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Hi Jlove, sorry to hear your news. I am dealing with progression as well. Dx in March that it is now in 2 lymph nodes one under collar bone and one in lower back area behind my stomach and in front of my back bone. Was on a Study Trial of Avastin and a pill Erlotiniib and before that it was Abraxane and Avastin. I am on Xeloda now since 4/13/15. I have my CT scan on 6/17 o see how its doing. I feel pretty good and strong so far. The se's have been a little brutal but manageable now that we have adjusted things a bit.
We have to keep positive and keep fighting. I know I am expecting a miracle and I plan on shouting from the rooftops. I want to be able to say "I am NED"!!! I will say it!!!
So hang in there and check back often. I wished more folks would post more, it sure would be helpful.
Xavo, I agree about the biopsies. I had on on the lymph node underr collar bone to confirm and we went with that and didn't do the one on lower back. They said it would be a more invasive surgery and that it would be pretty certain if the one was positive it would be also as they showed up at the same time.
I wished I knew more about how all this really works and why it shows up in places when there were no lymph nodes in my breast. So odd...and it took a second opinion after my lumpectomy for them to say "what are the nodules on your lung?" The first teams I went too said it was nothing to worry about that many people have nodules on their lungs. So they had me do a PET and low and behold...TN. Very frustrating and I am just glad we fouund out before I started any treatment
Have a great day ladies...Lucy
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Hi everyone. I had my second dose of weekly Taxol today. It really hasn't been bad rap compared to the taxotere. Wow the more time passes from when I stopped that the more I realize just how sick I was.
It's encouraging to see all of you ladies and esp the triple negative ones doing well. It gives me hope ! Thank you for that!
I have a brain Mri next Friday .... Already getting anxious about it !
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I am new to joining this site but not new to Breast Cancer. First diagnosis of stage 3A triple negative BC was in 2013. On May 1st this year, I was diagnosed Stage IV TNBC. So a whole new chapter in my life. Currently on Paclitaxol (3 weeks on 1 week off), I am on my second round of the treatments. My first CT Scan will be on July 13th, praying for good results. Feeling great...only side effect is the hair loss. Very encouraging when I see posts like the one from Lotusblossom!
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Hi. Need some support. Have had six month NED but went to onc today and have new mode in other side of neck, sternum and some possible traces in the liver . Starting xeloda next week . Terrified for my children . Support needed
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Hi everyone. Very frightened as onc told me of progression today- new nose on other side of neck, sternum and some signs in liver. Going to start xeloda next week but don't understand as they say it is a containment rather than a cure ? Support much needed as scared for my kids Barbar
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