Triple Negative Stage IV
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kaylynne A lot of those side effects are from the steroids they gave you I'm so sorry you had a rough go with AC ...don't despair there are other treatments. I'm sorry that Houston is so messed up right now and that you probably won't get into the MD Anderson for a while. There are many chemo treatments for stage 4 that are not as toxic and much more manageable some you won't even lose your hair with and some that can keep you stable for a very long time without any protection or even with some tumors suppression. Don't lose hope you got time
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I second what PeacockGirl said - don't lose hope. Many people tolerate Taxol fairly well, and it usually does a good job on suppressing the growth. Xeloda (a pill) was already mentioned.Also, you might want to ask about Ixempra - it's an infusion (once in 3 weeks) but is tolerated generally fairly well.
Sorry that the flood messed up your plans!
--sfgirl
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Kaylynee, same here. Don't be afraid to try different chemos. They are all different and affect different people differently. I couldn't tolerate taxol but ac was fine. Just finished 2 easy years of carboplatin. Don't give up yet and remember you can call it quits on a chemo when it doesn't work for you. Best wishes on finding what works and keeps you living long and happily...on getting back to Houston too.
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This is Raewyn's husband. Sad to report that she ended her fight on Aug 14, 2017 early morning.
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To Raewyan's beloved, thank you for sharing her passing. I am grieved to hear this. She was a beautiful soul and this earth will miss her dearly. Many prayers for you and your boys as you work through life without her.
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Rest in peace, Raewyan
So sad to hear about her passing... she was a great inspiration for all of us here.
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Very saddened to hear of her passing. Her spirit was so strong last time she posted a lovely update with her magnificent quilt. I wish you and your boys nothing but peace and knowledge, that you all Have a beautiful angel watching down over you. Thank you for sharing. ~M~
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Micmel, those are very beautiful words and so very true.
Xeloda's next for me. Happy to have a plan but bummed for the first time ever to be facing a three day weekend. One more day delay in getting started on something. Gosh, I hope it works. The speed of this cancer just freaks me out. Hoping to still start a good immunotherapy trial when this treatment ends. Having a head start on a few may make them possible but not this time. Can't wait another week. Let alone three.
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Kaylynn, I have had 5 different kinds of chemo in the last 28 months. I have been blessed to not have experience the SE's (other than hair loss) and mouth sores with Halaven. Don't give up!! Maybe there is an immunotherapy that you can try. I am getting ready to start a clinical trial next week.
Kaay, I am so sorry to hear about you changing treatments. You had a VERY good run with Carbo. The next one will give you the same!!!!
Julie
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sorry to hear that we lost one great fighter and she was a fantastic women and a great contributor to this thread.. i am really suddened by the news.
Wishing both of you kaay and tex the best response to the new upcoming treatment.. be strong and keep it up!
You are my inspiration
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I am heading to Houston tomorrow. All appointments are still a go. Thank you for all the responses. I saw my regular MD last week and she encouraged me to continue on with chemo and fight like hell. This is the first time that a medical doctor has actually given me hope.
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Hello all, I just found this thread. I've been stage IV triple negative for about 21 months. This followed TN DCIS and Stage IIB ten and four years ago respectively. As Stage 4, I've been through xeloda and then a trial of a checkpoint inhibitor and an immunotherapy drug. I'm now on halaven and have been stable since January. My mets are to bone, lymph nodes, lung, liver and bone marrow. I'm glad to have found you all.
Robyn
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Robyn, welcome! So glad you found us. We need more ladies on this thread...well obviously nobody needs tnbc but you get my meaning I hope. So glad that Halaven has been working for you. May it last and last.
What was your experience with Xeloda? It may be my next. Or new news today suggests maybe I'll do a trial first after all. Still up in the air. Any luck with the immuno trial you tried? So hard to pick a new treatment. Halaven's on my possible list as well.
Kaylynne, so glad to hear you're off to Houston ...and keep that hope. It matters!
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Hi Kaayborg,
Thank you for the welcome! Xeloda I found to be super tolerable but it didn't work for me and I went off it after my first scan. The immunotherapy drug initially looked pretty good and my tumor markers went down some, but about five months into the trial I developed pneumonitis (lung inflammation) from it and also my cancer started to grow again so I was removed from the trial. Still, I wonder if the immunotherapy may have contributed to my success with halaven. There's so much we don't know about immunotherapy still. I find halaven to be a bit rougher than some of the other chemos I've been on - hair loss, nausea, fevers, fatigue - but it is working so I'm all in. I'm so glad to have found you ladies.
Robyn
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welcome Robyn ...I too developed immune pneumonia on my keytruda trial been off 6 weeks now and off xeloda too. Pleural effusion ascites And colitis to boot. Super slow climb out of this hole I've been in. Never been so sick. On big course of prednisone now to soothe immune system and stop inflammation in all my lymph nodes.
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The last two months have been a gift of normalcy without the effects of chemo. Last week's test results at MD Anderson showed the tumors increased slightly in size and one additional very small tumor was found in my liver. I will begin weekly Taxol this week in OKC and I hope the side effects aren't as bad as the red devil. I'll go back to MD Anderson in December for scans to see if the Taxol is effective. No trials were available to me at this time. Does anyone else have experience with Taxol? What were your side effects? Could you work? Did you lose hair, have neuropathy, exhausted? I'm fighting. I'm living. I'm praying. I have so much more to do on this earth. I need to know what my "new normal" will be.
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the weird rash on my neck came back as TNBC so we are going lo dose abraxane weekly IV asap. My lung pneumonia has gotten better in prednisone Will start tapering that when chemo starts still have a little left long pleural effusion but my ascites is not getting worse so I've got that going for me. I have lost so much strength and muscle in the last month but I'm trying to get up more get back to walking get back to eating my appetite is slowly coming back and now I'm on a time release OxyContin which is helping with my horrible pain spikes from the lymph node pain in my gut. Anybody have tips to share with Abraxane my doctor said it has good skin penetration qualities in the albumin coating means you don't need a lot of premeds are steroids.
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kaylynne. I had Taxol my first go around 4 years ago it gave me buzzy fingers and toes and kind of some nerves zaps down the back of my leg. The first taxol infusion was the worst when they switched me from AC just horrible bone and joint pain the second infusion was nothing and three and four weren't really anything to write home about . I really had more side effects and problems from the Neulasta shot then I did the actual taxol. My hair started to grow back while I was on taxol but I had really lost it on AC. You will have hair loss with taxol...i'm looking at that right now with Abraxane in my future but it's hair I don't care I want to feel better I would live the rest of my life Bald to get rid of what's going on with me right now.
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Thanks for the reply @peacockgirl. I had my first taxol treatment yesterday and had an allergic reaction. I was given benedryl and something else and it was fine. Today I am feeling a little weak and drowsy and have cottonmouth but nothing really horrible.
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kaylynne ugh I'm sorry you had an allergic reaction that can happen I remember they gave me a lot of Benadryl in the pre meds ...I was reminded today by a friend they used to give first taxol dose in the hospital because of the possibility of reaction ...like 8 or 9 years ago. I'm glad they got it under control I'm sure it was scary rest easy ok
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Hi Everyone
I was dx with Stage IV mets to liver on August 29, 2017. I am ILC triple negative. Still trying to deal with all the emotions. I tried to get into the Keytruda trial (355) but they said it would be the end of September before I would start getting treatment. I have extensive mets to my liver and did not want to wait a whole month to start treatment. That was very frustrating to find out the length of time you have to wait to be cleared for a clinical trial. I started Carbo and Gemzar which were going to be the clinical trial drugs with or without Keytruda. Keytruda was the trial drug. Did not want to wait a month of starting treatment and end up in the placebo arm.
Switched to Emory MO so hopefully I can get into trials a little quicker. Plan is to see how the Carbo/Gemzar is doing and if not working re-biopsy tumor and send off to get Caris and Rationale Therapeutics testing. I want the Caris and Rationale Therapeutic testing, being at a NCI center is not always open to that but I am going to push for that.
So far, little side effects from the Carbo/Gemzar. Just a case of thrush which was treated with Nystatin. Platlets down to 121,000 but hoping they stay above 100,000 to continue the treatment. WBC, RBC and Tot Liver Bil are good at this time.
My liver cancer does not image on scans at all, only MRIs. I have a lot of fatty liver that makes scans difficult to read. I have my next MRI the first of December to see if Carbo/Gemzar are working. TMs are done at the beginning of each 21 day cycle. My last TM was 3532 before chemo.
If you have any suggestions for me, please feel free to post. I want the doctors to be as aggressive with me as they can. I look up clinical trials and articles all the time to have options and to push my doctors.
Prayers and positive thoughts to all.
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Hi! This is my first post, I just received the news yesterday that I have a reoccurrence & there is now cancer in my lumbar bones & a lymph node on the left side by my clavicle, original cancer was on the right. I was only NED for 4 months after having chemo, mastectomy, radiation & 2 rounds of preventative xeloda.
My oncologist wants to do a biopsy this week to check if the bone mets have changed to her2 positive. If not then I will have my port put back & start an iv chemo for 3 weeks on, 1 off, indefinitely. I don't remember the name of the chemo, but does anyone know if that is pretty standard for bone mets?
I'm getting a second opinion at an NCI accredited clinic next week too, but it's 3 hours from home.
Very emotional for my family this week & pretty devastated. I thought bone mets were more treatable & had a longer prognosis but the dr seemed to indicate that it only has a prognosis of 2-3 years. That we would go to one drug then when it stops working, go to the next. Does the chemo always stop working? It's just so hard to comprehend right now.
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Hartirsh and Pearl, I am so sorry to hear that you are having to navigate the new emotional waters of the diagnosis nobody wants to get. I am glad that we have each other here, however.
To Hartrish, boy do I ever know what you mean about having to wait to get into trials and not wanting to. I just made a similar decision after my first line of treatment (gemzar/carbo...same as you, then just carbo) failed to work. I wanted the trial next so badly, but decided I couldn't wait and was about to swallow Xeloda (pill chemo). Then, they were able to see me sooner so I waited for it another week. Then, I was not accepted because platelets were too low. So I ended up being off treatment for 5 weeks. I could have waited longer for platelets but did not feel it wise. Not even sure it was wise to wait period.
I can offer lots of hope to you regarding gem/carbo. I was on gem/carbo about a year, and then carbo alone for a year. I tolerated it very well and had 2 years of blissfully normal life, with just a little shadow of cancer. These chemos are hard on blood counts, though. I struggled with them throughout but little adjustments helped me stay on wonderfully effective treatment. I used Neulasta to help with white counts, and when that still did not help we added Neupogen. We reduced the gemzar twice and added an extra week of recovery (2 on 2 off instead of one). Then we dropped the gemzar altogether, but then I developed the carbo allergy. So, we added more premeds and slowed the infusion and then we slowed it even more. All of this kept us one our toes but I am very pleased that my onc worked so hard to make my first line last so long for. I just found out tumors started growing again last month and so have switched treatments. Still waiting to see if it's working or not. Hate waiting! As for trials, I recommend that you be looking now for trials you are interested in and start making phone calls to the research coordinators. It's always good to have the next step in mind to try to save time. That being said I have learned that studies usually require a 3 week washout after your prior treatment, so that will always be a tricky issue. I agree with your decision to start chemo instead. It is best to get disease under control as quickly as possible with extensive liver mets. I have the same. 2 were nearly 10 by 10 cm. Innumerable others. Gem/carbo cut them down to 2-4 cm and held them stable for a long time. I will also add for your information that my doctor would treat when platelets were 75 and more than once she let me go ahead when the were mid 60s. I also got scans every 2-3 months. It seems you might be waiting longer than that. ??? I see you were also stage 1A at initial dx. Oh, the irony of "early detection is the best protection."
To, Pearl, I'm gonna get back in a few.
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Pearl, it sounds like your doctor is proceeding in typical fashion, though, I don't have bone mets...liver only. My tumor was tested to see if anything changed to positive. That would open up a few more treatment options so it is always good to check. I'm negative everything so no luck with that yet, but it could still change so we retest at each progression.
As for prognosis, isn't that the BIG question. Many MOs don't venture to put a time frame estimate on things (there is truly no way to forecast how each individual will respond to treatment), but from what I've gathered from others here, that is a typical time frame given, 2-3 years. Bone mets only is better generally speaking. You have no idea where you fit in the whole scheme of things. Triple negatives have a worse prognosis but there are ladies on here with TNBC who have outlived those not TNBC. There are a couple ladies I know of who are 8 or 9 years out from their mets dx with TNBC. I try to think about that end of the spectrum, but it is hard especially at the beginning and then again when progression hits, which is where I am sitting right now. And sadly yes, chemo is not going to work forever. Pray for dumb cancer that takes a long time to find a way around each weapon and for tolerable side effects. The goal is to find effective treatment and stay on as long as possible so you can add up those years. Definitely keep looking at trials. Immunotherapy is proving most successful with TNBC. Though not many respond, those who do can get a really long time out of it. I hope to take my shot at immuno at some point.
Wishing the very best for all of us. The beginning is such a tough place to be. It's a roller coaster ride for sure but it does get better with time. Lots of good life to live!
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kaayborg, I'm hoping to find out soon about clinical trials, my dr mentioned he was going to check and see if there were any I could get into. He said there might also be experimental treatments eventually, but wants to go with what he knows to work and hopefully we can delay my hair all falling out again. I know that's the least of the worries but it was just starting to grow several inches and my daughters have been so excited to see it grow back! Maybe at my second opinion appointment they might have some information for more treatments too.
What are others thoughts on birth control? My onc and my gynecologist both said that having the mirena iud is ok since the cancer isn't hormone positive.
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Being done with adding to the family, my husband had a vasectomy. The copper iud was recommended at my initial dx though with mets there seems to be less concern about hormones as I'm on Vagifem. How old are your daughters? I have three. 14, 11, and 8.
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They are 8 & 4. I had bleeding issues before so we decided on the mirena to help with heavy bleeding and it did help! But a few years ago I had an episode where I bled really bad. When I was originally dx'd last year they said I probably had the cancer about a year and half to 2 years and I can't help but wonder if it coincided time wise with the bleeding. Now, just a month ago I started bleeding again, which would be about the time the cancer showed back up on a scan.
My husband said he'd get a vasectomy now, but I don't know if going off birth control could make any hormones affect how fast the cancer grows, or with chemo. I guess a lot of questions to ask my drs. Just feels like my mind is a roller coaster of thoughts this week! Our original plan was to have a hysterectomy when my mirena "expires" in january, but I'm not sure if that's an option now.0 -
Learning I had stage 4 TNBC Mets to liver put me in a position I hadn't been in before...no control. When I have faced obstacles in the past, I have hunkered down, made the needed decision and executed the solution. This time there isn't a permament solution. I still haven't wrapped my head around that but I have decided whatever is in my power to do I will do. I've been an on and off again yogi for 3 years. I've decided to be on again from now on. The breathing, the poses, the oneness with the group all help with my healing. I also embrace Reiki treatments. I had my second dose of Taxol on Monday. I have been walking a mile or two a day to stay active. Last night I attended yoga and after received Reiki from 4 wonderful women. Last week after my treatment, I had horrible cramps and pain during the night that lasted a good 24+ hours. This time I have a few pains in my hip area. I believe the yoga and Reiki made the difference. I'm also reading Anticancer A New Way of Life by David Servan-Schreiber, MD, PhD. I came across it because I found a documentary on Netflix with the same title. This book is so informative and from a cancer patient's viewpoint who happens to be a doctor as well. If taken to heart, I believe it's a life changer/extender.
The movie (documentary) is The C Word.
I am not hopeless or helpless in this fight. I am grateful for the love and encouragement I receive from my friends and family as well as the sistership with group.
Kay
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Kay, my oncologist told me to use l-glutamine during taxol to help with the pain. It helped tremendously, it's an amino acid, white powder that dissolves in water and only available at health food stores. I bought it at Whole Foods.
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Thanks! I actually have that in my cabinet. I'll start today.
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