Triple Negative Stage IV
Comments
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mbherrmann sorry that you are joining us here. When I did Taxol in 2012 the first round hit me so hard I cried for days. When I went back to get the 2nd dose I told my MO I almost didn't come back and told him why. He got on to me for not calling and telling them. Don't be like be call your MO and let him know how bad the pain is. It may be the combo you are on. Keep us posted.
Cat-nadir is your lowest point in your blood counts
How many of you are taking vitamin D? I know I take 5000 a day. I can tell by my mood if I have been forgetting to take it.
Tomorrow I go and find out if we are sticking with the Doxil or moving on to something new already. Depends on if the doxil has been working on the tumors in the liver. I'm hoping that's what all the pain has been.
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Can you share any pain management regimens? My current medications are oxycodone 5mgs 1, 2 or 3 every 4 to 6 hrs.as needed. Ketorolac 10 mgs every 4 to 6 hrs. Plus I wear a 50 mg Fentynel patch all the time due to the chronic bone pain where the cancer is. I also take ibuprofen 2x a day. I dp tke claritin 30 minutes before taking Neupogen.
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This week has been a terrible week for me too. Started on Doxil last Monday with neulasta on Tuesday, and Ive felt like shit every day. Mo says its too soon to tell if its working or not, but it sure doesn't feel like it Bed is the only place Im comfortable. I was on abraxane and it was my very favorite chemo of any of them. No side effects to speak of, although I was doing it as a single agent. Hope you get some good answers soon.
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Mary-gentle hugs, it's that freakin shot..it is evil. I'm grateful I don't have to take it right now.
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mbherrmann - the regimen that most of us took for taking claritin is take it one day before neupogen/neulasta shot, take another claritin the day of, and then continue taking it for 2-3 days after. It makes it a lot better. You may want to try that too in addition to anything your doc suggests.
Lost - I take 4000 vitamin D a day, plus B12 & B6 because I am a vegetarian.
Mary - I am with you in feeling that bed and couch is the best place this week. I am just starting to come out of it. Are you doing it weekly? I hope not so you have time to recover! Hope you feel better soon. ((((HUGS))))
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Hi. I'm new to the group. Had a brain tumor removed three weeks ago today. So far no one has mentioned any additional chemo or drugs to me. They were able to get all the tumor and I need to decide on gamma/cyberknife or whole head radiation. I would prefer the gamma knife, WBR scares the crap out of me, but they are pushing the whole head due to the aggressive nature of the cancer.
I just can't make a decision. One minute I think I'll just go with what they suggest and the next I say no way. I just want to do the gamma knife.
I also want to look into Proton therapy at Penn, but not sure I'm a candidate.
Hugs to all!
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Thanks for telling me about the extra claritin. I was only told to take it 30 minutes before injection. I take the neupogen 2 or 3 times a week - just depending on my labs. I will just take it everyday. I went to my PCP today and got a inj. of toredol and it has helped some today. Going tomorrow to oncologists PA in the morning. Sometimes I feel like they don't tell me things I need to know about side effects.
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So my MO does not like the looks of the ultrasound, he said "we need to get those liver tumors shrunk now". So my chemo starting today was carboplatin that I will receive every 3 weeks and starting Mon Xeloda every day for 2 weeks.
Any info on either one of these would be great. They gave me handouts but I like to hear from you all.
Thanks!!
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mbherrmann - I am glad you got something today to help. Maybe taking Claritin every day will help some - I am praying! It sure helped me with those gripping pains.
Welcome Bluebird - I can understand going back and forth about the treatments. I'm sure they both have pro's and con's. Sometimes, we just have to go with our gut feelings. Please keep us posted. Sending you strengthening prayers.
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Good morning all! doing my taxes, thought I's take a break and pop in. I had my brain MRI and PET scan on Friday, and I see my MO this Friday, so I'm praying the results show no progression.
Cat, as Lost said, nadir is the low point in your blood counts. It's when I felt my worse physically, usually hitting 3-5 days after treatment. On those days, especially with AC/T, I'd stay in bed most of the day.Current tx not so bad, just really tired on those days, but still functional.
Bluebird, When I see my MO on friday I am also going to ask about proton therapy. I get my tx at Penn's Perelman Center. They don't want to do surgery on my chest nodules, so I'll ask to see if the proton therapy can be used, or , God forbid, I need something done to my brain.
Lost, When I joined the boards, I felt like all I had were questions. Now, I'm happy to share some answers with my experiences. As for Vit D, my pcp started me on 1000mg/day before I was dx with bc. Just this month , I've increased it to 2000 only because the pharmacy was out of the 1000. I think the 1000 must have been good because my blood tests were good. But I've also increased my intake of dark green vegs and also make sure I sit in the sun for atleast 15 minutes a day. Now that it's getting warmer, my sunshine should increase. Now, as far as the chemo goes, I'll give you some insight. My 2nd tx of chemo was Xeloda. 2 weeks on, 1 off. It kept me stable from May til Dec. It started out fine, but I got cumulative se's as time went on. I got pretty bad hand/foot syndrome. Not neuropathy like taxol, put pain, redness, and skin peeling. My hands felt stiff and it was hard to do fine motor skills, like counting money or separating papers. I was on a pretty high dose though. There's a thread called "all about Xeloda" that will help you. My current tx is Carboplatin and Gemzar. As far as se's,very slight swollen feeling in fingers and toes. My nadir is not too bad, just tired 3-5 days after, and just very slight nausea feeling. I only take my ativan and compazine for 2-3 after tx. The biggest problem I had so far was the drop in platelets , that I had to skip dosages until the count came back up. We've since changed from 2 wks on 1 off, to every other week so I can get a shot of neulasta. My MO is already talking about maybe changing to something else. We'll see how my PET looks first. And There is a Carbo/Gemzar thread also. In the research I found, some MOs prefer cisplatin over carbo. It makes you more nauseous, but the platelets don't drop so low. It's worth it to ask about. Good luck with your regime.. Keep us informed on how you do.
Lori
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Welcome to FierceBluebird and good luck with the treatment you choose. Please let us know what you have decided and how you are doing.
Hugs to everyone!
Brenda
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I got my second Taxol infusion today. This week has been horrible. I
was totally out of it for 3 days and couldn't barely pick up my head. I
just started feeling normal yesterday, then got infusion today. I am
hoping it was bad because it was the first infusion. I seem to remember
that from when I got it before. My blood counts are still within normal range.Bad news today though. They didn't
have enough tissue left over from lung biopsy to test it for a clinical trial I
am interested in (CDX-011), so now have to have another biopsy next week
- he wants to do it before lumps shrink, but they actually seem to
be getting bigger, not smaller. They are going to do biopsy on the nodes on the side
of my neck because they are big and accessible. At least no chance for
collapsed lung this time! I told them they will have to heavily sedate me
along with locals as numbing doesn't work good on me. He gave me
scripts for oxycodone and valium. They will call me with a date/time.0 -
Tina,
I hope your biopsy does not hurt next week and that your doctor gets the information they need from your lump. I also hope that you get into the trial. I have my next scan scheduled for Monday. I have this feeling of dread...
Hugs to everyone.
Brenda
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Tina- Sorry you seem to be having such a rough time with the taxol, I hated that one. Hope the biopsy is an easy one and gets you the answers you need.
Lori- thanks for all the information. Had my first carboplatin on tues and it did make me more nauseous that the others have so far. Hope it's just a matter of adjusting to it.
Brenda thinking positive for your scan on Monday.
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Thinking of all of you and wishing for a better week coming up!!!
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Well, we're playing the good news/ bad news game again. My brain MRI Is clear, thank God. PET though, labeled as showing progression. There are no organ mets, but possible bone mets in clavicle, although it could be a false positive from the neulasta shots. Some of the soft tissue nodules have shrunk, but others have popped up. And now there are more deeper level lymph nodes involved, the most reactive showing a suv of 20.
So, I am now on Halaven, and have started paperwork to see if I can start a trial for PD-L1. It's an immunotherapy tx. If my tumors have the right biology, my MO thinks I would be a good candidate. Fingers crossed, since I seem to be immune to the current chemo's, I feel as if immunotherapy is my only hope.
wishing you all a great Sunday. Enjoy.
Lori
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Brenda - sending good vibes your way for a good scan on Monday! Please let us know results.
Lost - I hope your new chemo kicks those tumors into oblivion.
Moderators - Thank you for thinking of us! Sometimes I forget you all make this wonderful forum possible. I think I would go crazy if I didn't have the wonderful ladies on here to "talk" to. It makes me feel not so alone with these disease, especially with the TN diagnoses.
Lori - may the current chemo zap those nodes and good luck on the clinical trial! I am so happy to see so many more trials for TN. It is really encouraging that they are doing more research.
Bluebird - I'm praying for you and hope you come up with a plan soon. Please let us know how you are doing.
So far, I am still functional after the second taxol. It is day 3 and it hasn't hit me as hard as the first round. The hydrocodone really seems to help the aches and keeps my mood up. My biopsy is set for Tuesday and I am already having nightmares about it. So scared they won't give me enough sedation as locals don't work well with me and I have been literally tortured in past biopsies and surgeries.
I hope everyone has a better week.
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I was looking at all trials again in my area (200 mi radius) and came across 2 that have potential to get treatment for Her2 even if by today's standards you are Her2 negative and have metastatic disease. I have always thought from the beginning when I first got TN that somehow treating the Her2 would be beneficial. My FISH tests have all had 1+ or 2+ expression with a 1:1 ratio. It has bothered me that they still consider this negative. Who ever came up with that number and why?? ER and PR are ZERO before considering you negative. If you express Her2 at all, why wouldn't it be beneficial to take an anti-Her2 drug? I have seen so many articles in the past couple of years that have indicated that Herceptin (or similar drug) has been found useful in Her2 low patients. I am going to see if I can qualify as you can pre-register and get tested even if you are currently receiving treatment. They are both about 2 hours from where I live. One is a pill, the other is by IV. Has anyone else looked at, or participated, in these trials? I am really excited about exploring this path!!
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Tina, your enthusiasm about her2neu is contagious! I can't wait to hear what you find out. I had to check my old Fish result from 2005. It only said "non-amplified".
Good luck!
Brenda
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I've already heard back from the Professor of Medicine/Hematology/Oncology at Birmingham. He said it is easy; I just have to sign consent form and I can get tested to see if I have a Her2 mutant that can be treated! He said the clinical nurse will contact me. Wouldn't it be great if we TN's actually could use this in our arsenal? That trial is to use Neratinib
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So it looks like NED has stopped dancing with me. My oncologist wants me back
on the same chemo in 2 weeks. He also wants a biopsy done ASAP but
he's pretty sure it's triple negative because of the way it responds to
chemo. It's not "as bad" as September of last year, he said. Also, the
good news (if there's such a thing) is I get to stop the Femara. I
feel like death is at my doorstep once again.0 -
Brenda - so sorry you are scared again. Hopefully, the chemo will zap it again and keep everything at bay. I just got through another biopsy today and am sore, but so glad I have more tissue to send out to see if I qualify for some trials. Maybe you can get into some of these trials too!
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Thanks, Cat. What kind of trial are you on? Did your onc tell you about it?
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Brenda - I am not on any trials, yet. There are 3 different ones that I am trying to qualify for. One is for a drug that would be given along with Xeloda if I express a certain protein. I should find out in a week after they send my tissue off again. The other 2 trials are for targeted treatment for Her2, even if you are considered Her2 neg by FISH standards (as all TN's are). One has to test your blood with their new test, the other will test tissue to see if I have a certain Her2 mutation even though I am Her2 neg. I am really interested in these targeted treatments as I have read a lot of research that is showing promise for treating Her2 neg people. My onc did not tell me about these last 2, I found them on my own by going to clinicaltrials.gov and searching for trials within a 200 mi radius of me.
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Thanks, Cat. I may have to look into that once my chemo stops working!
Where are your mets?
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Cat, how do you qualify for the trials? Would you send us a link, please?
Thanks.
Brenda
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Brenda - you can go to clinicaltrials.gov and in the search box put nct01048099 and nct01670877 to bring up each trial and see if it is in your area. You can also search for all trials in your area if you want. For these trials, you can actually start the process to get pre-certified if you test positive for their requirements, even if you are currently receiving treatment. Then, you would be ready to start the trial if/when your current treatment fails. Each one has different requirements that you can read about in their document.
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Hi all. I'm really flaky lately and forget which forum I posted on or not and trouble finding them again even though I list them as favorites. Its so frustrating.
I'm debating going with another RO yet again. All someone has to do is mention "blah blah blah...had great response at....blah blah blah..." and I'm ready to go there. My oncologist wants me to try someone now. I'm just so overwhelmed. They need to have patient advocates who help you make decisions! I know, no one can make these kind of decisions for you, but I am definitely getting anxious with all this time passing. See my RO from the hospital on Monday.
Slowlorris, Penn did my surgery but they told me I'm not eligible for proton therapy that they don't use it for mets.
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FierceBlue,
Just posted on brain mets sisters, so hard to find tns with brain mets! Your profile didn't say whether you are triple negative but I'm assuming you are. Ok, first off do you have good disease control from the neck down? Second there are two schools of thought with SRS vs WBR: wbr can only be used once and can have some pretty decent, sorta scary side effects. OR which is what I wished I had done, do wbr first then use SRS as a boost to go after the little ones. I opted for SRS first for fear of losing my hair. Stupid vanity. Now I'm out of options except for trials. We shall see!! Either way, get a second opinion!'
Nicole
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Oh Nicole I'm sorry to hear that! You cant do wbr after srs? Things just don't make sense to me sometimes and didn't even start radiation!
Yes triple neg. But brain tumor showed some pr+ which also didn't make much sense to me.
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