Triple Negative Stage IV
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Hello all, I hope you are having some lovely spring weather, we sure are (finally!)
I am currently on an immunotherapy trial which seems to be doing some good, however my doctor is considering when (not if) I should switch to chemo and that may happen in about 30 days (I have an appointment with him in two weeks to discuss).
I know there are threads out there but I wanted to ask this forum specifically because it seems like the right crowd: what can you tell me about Ixempra?
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Thanks Texas! Feels like I'm getting closer but also so far away as the shrinking happens every so slowly now.
Homehelp, there is a trial open at OSU where everyone gets the drug (no control group). Is that not actually called a trial then? Still learning the lingo. I'd like to get into that one but there is a chance it will close before I need it. Really I'd love to just get the drugs when on the market, if that could time out right. Here's hoping. My onc has her eyes on some trials out of Vanderbilt as well. Wherever I find to go, the abraxane combo is what we're looking at right now. Not traveling would be great. Abraxane causes hair loss correct? Is that still the case when combined with immunotherapy? I am appreciating having hair but oh, well if it must go again. It was bound to happen sooner or later. So glad to hear your wife is doing well with it.
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Hi Kaay
The Roche /Genentech anti pdl1 is not yet approved for breast cancer and it is a trial in which everybody gets abraxane and only 50% get the anti pdl1 and the others get a placebo
But everybody gets chemo
I know that for certain Breast tumors immunotherapy was approved but I did not think it was approved for triple negative yet ... So not sure if the insurance companies will cover it and whether an oncologist recommends just using that treatment alone without chemo is standard care
That was why I was curious if purple was only on immunotherapy .. What drug was being used ? Perhaps that is a separate trial of immunotherapy alone
Unfortunately there is hair loss with abraxane , but the other side affects are more manageable .. Biggest is fatigue
No pre meds needed and counts have stayed pretty good
One of the benefits I have been told is that if you are on the trial and the drug gets approved and the study gets unblinded you can be a candidate for "compassionate care" and be one of the first to get drug if you were getting placebo
Hope this helps
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Homehelp, yes, I realize no immunotherapy drug is approved yet but my onc feels approval is very near...that there's a chance (may be small) that by the time gem/carbo fails me I won't have to do a trial for immuno. But, there is, not a national trial, but a smaller scale trial for abraxane and immuno drug at OSU right now. She thinks it would be a mistake to stop gem/carbo for it though as it is working so well for me so we wait.
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I am on only immunotherapy right now - it is a single arm phase 2 trial of durvalumab and tremelimumab. I am stable-ish throughout the trial this far and my doctor feels that it will help make the next round of treatment work better (not if but when for more chemo for me). I have had all four rounds of both drugs together and the next step in the trial is just durvalumab every other weeks as maintenance for up to two years. I expect to be back on chemo next month though, we are talking ixempra.
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Purpleminion...are you in Canada?
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Nope, US.
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Hello all! It's been a busy couple of weeks so I haven't been here much. I met with my doctor today and rather than the ixempra (which works best with xeloda but I had progression on FEC so that makes no sense to do - 5FU is IV xeloda) I am joining Kaayborg on Gem/Carbo starting Monday. So, what am I in for? I had carbo and taxol at initial dx and experienced a flu-like thing a few days after the carbo, which was miserable in part because I was on zofran for nausea and I figured out later that zofran actually makes me sick! I now have kytril so hoping that will keep me happy. Am I going to be bald again???
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Good news Purple! No baldness! Do you have a port? Gemzar can burn going in. I tolerated it for several treatments but then it damaged too many veins. I got the port after six failed sticks in the end. No discomfort with the port whatsoever. But my damaged veins in my arm swelled up and were sore for several weeks after I stopped using them. Not permanent though.
I feel tired on days 3 and 4 after treatments and today happens to be day 3 after a 3 week break so I'm remembering what this is like. It's not too bad and short-lived and I had developed good ways of coping but it has caught me off guard this time. I've also added Neupogen and so I wonder if that has anything to do with it, though it is not supposed to make you tired I don't think. Body aches, yes, but I'm not really feeling that. I don't feel like it but I'm going to try to ride my bike for a few this morning to see if that perks me up any before work. Sometimes I think it's just moodiness too. It seems my period tries to come back over breaks and then chemo shuts it all down again. Good news is my skin clears up pronto. Thank you steroids.
Best wishes with gem/carbo. It's done very well for me. I'm hoping to stay on for a good while longer but my platelets are still hanging on the borders.
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Awesome Kaayborg, thank you for the info! Hair isn't *that* important but if I don't have to be bald that would be very cool. I have a port and I had carbo (with taxol) last summer so I remember the "carbo flu" that hit me usually on days 3-5 but then I felt better. I am hoping to do a lot of gentle bike riding this summer, I felt so much better the more I moved last time (even though I felt like staying in bed all week!). My doctor thinks that we will see results quickly if we are going to see results, because I've just had immunotherapy that he believes will enhance the effectiveness of the gem/carb. I am only getting it every three weeks, I have read that some people get another boost of gem on the second week but we aren't doing that. Have you had any fevers? I read that with gemzar that can happen the day after? Thanks again for sharing your experience. This time there isn't really a "chemo in May" kind of group for me since those ladies are usually in initial treatment so the experiences may not apply )I still might check in there though, we'll see).
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Hey PurpleMinion....so funny that you mention that Zofran made you sick. It did the same thing to me when I was on my initial chemo back in 2013...so I didn't take anything. I have a new ONC with my Stage IV diagnosis and she prescribed Prochlorper....I never have experienced much nausea with any of the chemo's I have been on....but there are a couple days that I feel kinda queezie...so I take one of those and I am good to go.
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I have been taking kytril which is very similar to zofran but doesn't give me the side effects. I will switch to compazine now that I am through the steroid phase of this round of gem/carbo. But this morning (Thursday, I had chemo Monday) I actually feel good and don't need any of it! Awaiting the steroid crash though so I know I have a little rough patch to survive but so far so good
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We have been quiet for a while ladies....just checking in. How is everyone?? Anna? Kaay? Purpleminion? Barbara? Bail? Rosieo? Mamiya?
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Texas, thanks for asking. I am OK. Processing. Bone mets need radiation. Spinal tap was negative but MRIs show a suspicious mass (and I know that spinal taps don't always get the cells) and my protein levels were elevated in the CSF... I should be happy but I find that I am just worried. So, sitting with that. Going to try to have a good, relaxing weekend at home with the family.
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Hey Purple! I know what you mean. My last PET showed stable but yet I still worry that things are not right. Just part of our lives now. Enjoy your long weekend with your family!!!
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Hi Texas
Nice of you to pep us up!! I had a crazy up and down week. Not feeling the best and then no appetite and needing to go for # 3 of my chemo. And the whole world came down this week. My grandson passed away. He was only 40. Between the way I felt and then this, I was so down I was going to tell the MO that I was not going to take the chemo. I felt so depressed. At my visit I told the MO all that was going on including now that I have this off and on bad pain on the right side of my face and of course this continuing consistent cough. Well he gave me a script for predisone! to take for 5 days. That was yesterday. It did help a little . I am not coughing as much and I do feel a little better. Thank God because it was really getting to me.
I wish a wonderful holiday to everyone. I always go to our parade on Memorial Day and stay for the services for deceased veterans. Happy Memorial Day everyone!
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Texas you are sweet to ask. It has been quiet. I've been feeling great. I can definitely tell that I haven't had chemo in a while. So this is what normal is like...well kind of normal. I have never dreaded chemo as my side effects are really not much to speak of but I do find myself not really wanting to go through it this Tues. At the same time I am also very glad to get back b/c there is obvious fear in being without treatment for so long as I have had only partial cycles for 2 months now...three weeks off in between which feels like nothing at all. I'm really eager to have scans. Would love validation that all is still good. I feel good, so it must be, right? This is what I tell myself anyhoo. When are your next scans? I'm thinking mine will be end of June.
I look forward to hearing how others out there are doing of late? Purple, keep us posted. "So, sitting with that." That sentence describes how I feel about most things. I just sit with them all, the good and the bad. It is sometimes weird how flat the whole experience feels most times.
Happy long weekend to all!
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Rosieo, I am so sorry to hear about your grandson. There is so much sadness. It is hard to take or know what to do with. Prayers to you and your family. I do hope you are feeling better soon.
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Hey Rosieo...so, so sorry for your loss! Prayers coming your way and hoping you feel better real soon! Hang in there!!!
Kaay...I know what you mean about the fear when you go without a treatment! When I was going from my first line to my second and waiting for the PET to return my ONC went ahead and scheduled a treatment because she knew how I would be not having something done. That was when I was on Taxol 2 out of 3 weeks. I had a PET scan on May 5th. Results showed stable. We will do a CT scan in July to see how things are going. Like you...I feel great and am very fortunate to not have any SE's with any of the chemo's that I have been on. So are you still on the Gem/Carbo chemo? My ONC mentioned Havalen for me next go round but I also asked her about the Gem/Carbo as an option. She was going to look into it.
Julie
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Hello, I am 34 and was diagnosed April 13th with stage lV TNBC metastatic i lymp nodes, liver, and bone. I have three children 6, 4, and 23 months. Everything I have read doesn't lend itself to being hopeful. Oncologists at Mayo says just low dose taxol for now...don't know enough to know if this is the right thing to do. Locol oncologists would have started me on taxol and carb. Just reaching out to other stage lV TNBC lifers for community support.
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nrsteph, welcome and I am glad you found us. I am on gem/carbo (second round today). I was just diagnosed with bone mets last month so only recently really joined this group (I had skin mets starting in December but that was still local).
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Nrsteph-
We want to welcome you to our community here at BCO. We're glad you've found us, and hope you find the support and advice you need. Have you considered getting another opinion, a third? Just to cover all your bases and make sure you're on the right path!
The Mods
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Nrsteph, I am so glad you found us. These boards have been an incredible comfort to me and I hope that you find them the same. One of my first and strongest feelings as I was coming to terms with my dx was an incredible desire to find other people in my situation. I felt so alone walking around looking at so many people going happily about without life-threatening disease. I am in my 30s as well, though getting nearly out of it. Today is my 39th birthday and I am feeling so very proud to be a year older but also taken a bit back by how quickly a year passes. As far as hope goes, I honestly have found the most here. Statistics are old and bleak but knowing women on these boards beating the odds, gives hope for each of us. Keep posting and go for those 2nd opinions regarding treatment.
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HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY DEAR KAAYBORG, HAPPY BIRTHDAY TO YOU-------------AND MANY MORE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
this is the best I can do, since I can't sing it to you. :-)
Rosieo
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Rosieo, I love my birthday song! You and Texas were the first to respond to me on these boards (something I think we all remember) and thus will forever be dear to me!
Purple, I've noticed that our treatment days are somewhat in sync (my cycle 15 began on Tues). That means we likely share tired days. I am off to work feeling weighted down today but steroids did help me get a lot of packing done in my classroom yesterday. Feel well. May you and I both bounce back in a few.
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Hey Kaay...Happy Belated Birthday!! Hope you celebrated well!! Long weekend before your birthday is always nice!
Hey Steph...welcome to our little group! We are here to support you! It is all overwhelming in the beginning but it does get easier as time goes on. Won't tell you it is easier all the time....I was diagnosed Stage IV a little over a year ago and I still have my pitty parties (depressed moments/hours). We are all entittled to those! Don't read too much on the internet as far as prognosis or stats! They are so outdated and everyone is different. There are so many treatment options available now and they continue to fine more. Keep a positive attitude and live your life! Enjoy those children!! I truly believe a positive attitude and your mind set makes a big difference. I continue to work full time and my DH and I travel constantly taking little mini vacations. So keep living life!!!
Julie
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Thank you so much! I need a community at this point... I am starting to lose my hair, not a big deal to me I look good in hats but for my children it is hard. I called MD Anderson yesterday because I read about their TN moon shot program. However, I was told by a very rude young man that MD Anderson would not provide a 2nd opinion while undergoing treatment and would only see me if my next PET was showing no response to treatment. The young man stated that they didn't have any oncologists that specialized or studied TN....so confused because it is one of the first things that comes up on google search. My most pressing questions now are...have any of you had tumors become resistant to treatment, and have any of you changed your diet? Again, thank you so much for the support!
KAAYBORG - HAPPY BIRTHDAY TO YOU!
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Steph...I have had tumors come resistant...that is when I moved from my first line of chemo to the second line. Small progression and a new met .8 mm. My largest met is 1.5 cm and the remaining 3 are less than .8 mm. When the new met showed up in the PET scan was when we moved from the first chemo I was on to the next. My last PET scan in May was stable....so we will do a scan again mid July and if I show progression then we will move to a third line (next option chemo). What chemo are you on now? I haven't really changed my diet...I had always eaten pretty healthy and exercised. When I was originally diagnosed in 2013 that was such a surprise because I didn't even have a primary care doctor...never had been sick except to have my children. Had been a personal trainer and always ate halthy.
Really the only thing I changed is eating a few more vegetables and cut back on the social wine/margaritas. I only have a glass of wine or a margarita for special occasions. I don't juice or anything like that....I feel quality of life is important and to me enjoying a good meal is part of that quality of life.
A little suggestion.....you might add your treatments that you have undergone so far to your profile....it makes it a little easier to understand what you have been on etc....just a little suggestion.
Julie
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hi everyone. Sorry haven't been on for a while. I had a very bad week last week when I was kept in hospital with a temperature of 39.8 and my blood pressure suddenly dropped very low but have been better this week. Just as well with the kids half term! In fact I just got back from driving to Cornwall and back which is about 450 miles from where I live.Nice to get away with the kids for a few days ! My worry at the moment is weight loss. Barbar
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Barbar, I am so sorry to hear about your troubling week but glad things are looking up for you and happy you had a nice get away with your sweet kids. Praying for health and peace regarding weightloss worries. Good to hear from you!
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