HERCEPTIN and/or PERJETA Threads
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gramen for some reason I did not come across in any of the threads of others taking Navelbine. Would you know why? I did not check if there is a thread for it here yet. Thank you so much for the info, I am very concerned, but she really does not wanna revisit getting a port, it's a bad trip for her. Onco, was not ecstatic but she said she knew of others that did not have a port. Hmm - what can I do. Otherwise of course I am happy the SE's are tolerable, thank you so much.
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Hi everybody...
Shutterbug - yes, I was NED when I took my Herceptin "vacation"...I don't think I would have done it had I not been and no, I didn't have any progression! I did get Xgeva shots once a month and they checked my tumor markers.....so had they started rising, I probably would have resumed treatment. Like you, I get very stiff and achy, especially after sitting, when it's cold and when I don't get enough exercise. And, mine seems to be culmulative. So, at the time I took my vacation it was really, really bad....I needed a break. Actually since I have started again (which was a while ago) it hasn't been as bad as it was. However, I do skip treaments every once in a while.... I was running a 1/2 marathon in May and I skipped my April treatment because I wanted to feel really good for the run... sort of like that. My oncologist doesn't seem to mind as long as I DO NOT SKIP Xgeva.
I hope that helps!
XO
Andi
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H&P lifer here in my 4th yr! Thank God for H&P it's working
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Andi - thanks for the info! I'm not ready to ask for a break yet, and I'm not quite NED either, but it is good to know that it is possible! I'm impressed that you are still running marathons. My doctor said "absolutely no running" because of old spinal compression fractures. I pretend to be sad about it but truth be told I've never enjoyed running.
PosNeg - 4 years, how wonderful! Keep going and keep checking in!
Txmom - I know many doctors have debated Perjeta's long-term effectiveness, but I have not heard of anyone being denied perjeta by insurance (in the U.S.). Has this happened to you? It might be that the insurance companies are waiting to see if anyone is willing to put up a fight for it. I certainly would, based on the CLEOPATRA studies results, unless I was NED. Then I might consider it.
Momallthetime - I'm sorry I have no advice to offer. I've only been in H&P and Taxotere so far. But I wish you and Dani the best. ( I can answer one question - Herceptin and Perjeta are considered biologics, so hopefully they are testing new drugs that work in similar ways. I think ONT-380 which was just Fast-Tracked by the FDA is a biologic, but don't quote me on that)
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momallthetime
ONT380 is a drug that disrupts the signaling that causes cells to divide in cancer. It's currently in Phase II trials and is used in combination with TDM-1 as well as Herceptin. Apparently it's proven to be quite effective in previously treated HER2+ breast cancer, even if you have progressed on Herceptin. It's been shown to be effective in shrinking brain metastasis.
One of the lead investigators is Dr. Borges, who several of the women on this board know from the University of Colorado.
I don't think it's considered a biologic, but it is a targeted therapy designed to disrupt cell division on HER2+ breast cancer.
A number of the therapies you are talking about are very new and most are probably still involved in Clinical Trials where they are investigating how to use these drugs and how to use them in combination with other drugs.
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Thank you Pwilamarth, WHEN I will have a chance to spk to Onco I will ask.!
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Guys thank you so much for your support.
I don't even know how to address what's going on. Pet/Ct done. Onco EMAILED me late pm (after I emailed her that PET is done, so she should know) so she wrote that it shows higher SUV everywhere. AND progression. She could have called. I don't understand these ppl. What's wrong with them. Yes, it takes time, BUT when after a 4wk period PET/CT shows such ugly differences I THINK they should take 5 mins and call the person.I can't even…. Anyway she told her to come in for in for BT (which she said it could be next wk, and I am like NO, we will be there early tomorrow!) anywayto make sure about the therapy. Off she went on Friday.
Then we had a meet with Rad Onco for the lesion on the skull that has a life of it's own. They really wanna do Rads, but there will definitely be loss of hair and no regrowth. And it's right at the front close to the forehead. So how do you fix this? So major problem. Dani is really not happy about it. Downright angry. Onco ordered an MRI of the Brain for this week, and THEN if it's still going crazy she might not have a choice, if it's not, Rad Onco is willing to give it a chance with systemic, hopefully. (D is already working on a wig with bangs, she sent me a picture, I guess it's her way of saying she knows she might have to go that way)
Liver: innumerable lesions from 2 discrete ones! And physiologic uptake in the spleen, gastro tract, renal and urinary bladder. What does that mean? The monster is in these areas? I did not get detailed explanation. Could someone explain it to me.And all the bones the SUV is higher by almost double. And the mesenteric left quadrant that I keep telling them it gets bigger all the time.
Seriously, should I go bonkers now?? What is she thinking, this so well renowned new Onco, I have to call her tomorrow and she will run the BT results with me and that's it? I really hope when I call like 9AM and tell secr that I wanna come in, that she will welcome me. It's hard to get all that through the phone!!! So now I worry about this stupidity.
They took her off Ibrance already, she is onlyon Letrozole and Herceptin. Soo nervous. I asked again about biopsy, and Onco was not keen about it. She doesn't think it's gonna show something new. Hmm I don't know, that was before when we only knew of 2 lesions in the liver.
I am stunned really, HOW could this be? And D does not know yet, I could not bring myself to tell her b4 the weekend. Docs, Onco and Rad Onco agreed that thereis no need to tell her at this point, about the enormity of the status. She knows it's not good. She did not even ask me if I got the report. We'll make a plan and then if it makes a difference for her we'll tell her, if not then we would try to push it till next scans. She is busy. Today is outing with the kids. There is not time for this nonsense!!!
I am really shaking, and it's been 3 days already. No one would know. I went about my business, doing what I gotta do. Did not tell my other girls, trying to go easy on this.
AND, wait, you know it's always interesting with us. On the way back, after literally a whole day in the city, we had a cab, and someone rear ended his car, twice, I kid you not, we are ok, the guy had to wait for the police, we left and had to take 3 trains home!!! That was actually funny!!
P.S – Warning, I am posting the same info in the threads I belong to, so be prepared for doubles.0 -
momallthetime -
All of us feel your frustration and discouragement with Dani's story. We all hope and pray that your oncology team can find the right combination for her.
Let your oncologist know that you would prefer a phone call instead of an email. I'm sure she will apologize and make an effort to speak to you on the phone in the future.
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Hi All -- I noticed some bruising on the bottom of my feet in the arch area. They are not particularly painful, I have neuropathy and some pain in my toes from chemo. Has anyone experienced this? I am four months from the last chemo treatment and am wondering if this is a delayed reaction or do to the Herceptin.
TIA
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mtdd - Like you, I developed peripheral neuropathy in my feet and I remember not being able to feel any thing in my feet. I seemed to have several skin issues with my feet for a couple of months after stopping Taxotere.
One of the problems with peripheral neuropathy is that you can easily bump your feet and injure them because you can't tell where they are. So the bruising could just be there because you are clumsy with your feet.
It's been over a year since I stopped Taxotere. I can't say that the neuropathy is gone, but it is so much better. I can tell where my feet are and I can actually walk around barefoot. I used to have to have some well padded shoes on a year ago and I couldn't tolerate anything with a rough surface on my feet - not even cotton socks. Everything had to be smooth, soft and supportive.
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Pwilmarth i called the secr and told her I really would like to go over quickly w doc re: tx. She told me to email her that I wanna talk to her and the secr will keep an eye it should happen. So now I wait! Thank you, so many wonderful ladies in these threads have pushed me to do the best. I just pretty much wanna make sure she does not wanna give something stronger. I don't wanna play around with this awful monster.
How long is the infusion for most of those that take Herceptin? Should she ask for a slower pace?
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I do my infusion over 90 mins, fewer side effects.
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Momallthetime - I am so sorry to hear about Dani. Please keep us posted. I cannot BELIEVE that your oncologist emailed instead of calling. That is really crappy. When I have scans, my oncologist schedules an appointment with me later that day...I have the scans in the morning and know the results in the afternoon. Also - I have my Herceptin over 30 minutes only. I don't experience any side effects....but, I am not having the Perjeta infusion for the time being, so that may shorten it.
Shutterbug - interesting that you should make the running comment. I was just reading a blog (friend of Deanna's - from the bone mets thread) and in her blog, she mentioned no more running. I had a couple major compressions...I had to have surgery for one of them, and yet my doctor has never told me I can't run. I was just wondering about that vs. what she wrote on her blog and noticed your post about it. I need to ask my oncologist the next time I see her. My bones/joints dont' seem to be effected by it, but I am SO MUCH SLOWER than I used to be... a marathon or half aren't easy to begin with, but now I really have to push myself. I think I just refuse to give it up because I love it so much and don't want cancer to take it away.... or maybe it's just part of my denial. (4 years later, I think I am still in that stage. )
Hugs to everyone else.
XO
Andrea
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Andi - I had radiation to two vertebrae but no surgery. The way he explained it to me is that tumor is soft and healing bone or scar tissue is slightly stronger, but not as strong as bone. He said I could have the surgery where they use cement to strengthen the bone if I still had pain after a year, but I don't have too much pain. I can say that I have run across the parking lot in the rain and for a few minutes afterward my spine felt like someone was sitting on my shoulders. Not painful, just compressed...if that makes sense. If you don't have any pain you are probably fine. It is great that you get so much joy out of it!
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thx mltdd I will mention it, I hope they don't rush her bcs they need the chair!
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Shutterbug - I did have that surgery where they put the cement to strengthen the compression....I can't for the life of me remember what it's called. I had it over three years ago - when I was in the midst of chemo. I was having a lot of pain... and that took care of it. I totally know what you mean about the pain vs. the compressed feeling.
XO
Andi
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hi everyone. Zarovka started a new thread in our stage 4 forums titled how many are we 2016. The thread was started last month. Z is attempting to count the number of metsters posting or lurking on our threads. We are both thinking that people have possibly missed the thread because they likely respond only to threads they have marked as favorites. If you don't mind bumping over to that thread if you have not already it would be appreciated
Thanks so much
Mary Anne
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hi ladies,
I have a question about how many chemo rounds you had before going on H/P alone. I just completed the 5 round of navelbine/H/P and the scan shows improvement in my liver, so Dr said that we would do a 6th round then on to H/P alone.
I have no details on the current size of the lesions since the report from the scan on Tuesday isn't finished yet, but I'm wondering why not stay on navelbine/H/P longer if there's still tumors in my liver? I hope is not a "6 rounds is the standard" bs.
Any references/studies/stories I can bring to my appt next week to discuss with my Dr?
I had neoadjuvant treatment in 2014 (tchp) then surgery/radiation, finished a year of herceptin, then wasn't able to convince my MO to scan after treatment ("it's the standard to only watch for symptoms") ...to have my breast surgeon finally listen to my complains and scan 7 months after last herceptin, and there's was the spread in my liver and lymph nodes...
I know I should be happy about the improvement, but I can't help to worry about stopping chemo!
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Herceptin and Perjeta Protocol
This is the standard protocol from the Perjeta website for metastatic breast cancer. The key point is the standard cycle is 6 doses of Taxotere unless you develop toxicity to Taxotoere. The Cleopatra study reported up to 8 cycles. In my case, we quit after 5 doses because I developed peripheral neuropathy. I had already achieved NED status by the time we stopped the Taxotere
It appears that your MO is using Navalbene instead of Taxotere, but the concept is the same. A minimum of 6 doses unless you develop toxicity/
It does appear that there is a clinical trial investigating the use of Navalbene instead of Taxotere, and the protocol is somewhat different.
Here's a recent discussion about the treatment of Her2 Positive MBC on OncLive
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thank you pwilmarth! The chart says "a minimum of 6 cycles recommended"... crossing fingers she's open to more, specially since navelbine is "less toxic" and I have no side effects..
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Hi Gramen - I shared your fears about going off of Taxotere, but my last Taxotere was 12/30/14 (after 6 cycles) and I have been stable ever since. In fact, I'm pretty sure all spots have continued to shrink. My doctor assured me that if there was progression we could go back to the Taxotere since it was still working.
I was dx stage IV from the start, so I still have my breast tumor. I noticed a huge reduction in the tumor size after cycles 1 and 2, but then it pretty much stayed the same. It has continued to shrink very slowly over the past 1.5 years off of the Taxotere. In hindsight I'm glad I went of the Taxotere after 6 cycles. I was just starting to experience symptoms of neuropathy, which went away completely on the H&P only.
Best of luck to you.
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Hi
A very much alike situation here: herceptin/perjeta/taxotere and stage IV de novo. Also an improvement after my first scan (after 3 cycles) and now stable after my seconden scan (6 cycles). I asked about more chemo and my onc agreed as long as my side effects are ok. I have almost no neuropathy, just a little bit maybe.
So now i've got cycle number 8 this monday and we are going for 9. (And I'm still a little anxious about stopping, so shutterbug, I'm really happy with your reply).
Gramen, i hope you and your onc can make a decision you feel good with, more than 6 cycles is always an option to consider. With stage IV, it is not 'one size fits all'. Getting a treatment you agree with is also quality of life!
Now i notice your question is from August 4, so wondering how it went?
Hugs
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Oh I begged my MO not to take me off Taxotere and she was like usually it's the other way around. ha ha I had 9 rounds of Taxotere. Last one was 12/15. I'm on H&P and tamoxifen. I feel really good although I have had some vision difficulties ( which they think may be hormonal) and my left eye remains teary.
Shutterbug, my MO at MD Anderson said she had a patient get declined Perjeta after a year. Hope this isn't a new trend. Sorry for the late response. I'm just enjoying summer with my family. I feel less anxious not being on the boards as much. Love to everyone.
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hi Casper, Dr agreed to go for 3 more rounds and scan! So at least a total of 8.
She said most of the studies have been with taxotere/taxol but she's not surprised I'm having very little SEs due to another study that compared them to navelbine and found it to be a little easier in terms of SEs.
You are brave! I had tchp for my original dx, and by the 5th round had to switch taxotere to taxol because I had hives all over my body, not fun!
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I too was afraid to drop taxotere after 6 treatments, but my MO said "I can't continue to poison you if you're doing fine." She knew what she was doing, I just was afraid that we were not being aggressive enough.My tumor markers were 40 while on taxotere and dropped to 19 once I stopped and we added tamoxifen. I've been stable since. That was about 7 months ago. Grateful that many of us have doctors that treat us as individuals, not just following a rigid protocol.
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Hi All,
Wouldn't a better indicator be if you have trouble climbing the five sets of stairs in the parking deck, or the two flights to your onco office ( don't try this on a humid day) or if you are breathless waking your dog, climbing steps, or doing the regular stuff life throws at you.
Keep moving, walk your dog or borrow a neighbor's dog, park far from your destination, eat right, and do some chair yoga. Sing in a group. Get that heart going. ( My 94year old father with a new mitral valve does one hour of stretching exercises in bed to start the day, with breaks in between) . Get off the couch, get back to living.
[Start slow, walk the mall in AC if needed, but get going!]
Off to a free chair yoga session at our local wellness center. Senior Centers also have chair yoga. Check them out! You can also watch it on TV. Classical Stretch is good, but she overdoes it in the beginning. Start slow and work up to it!
I turned 66 this week. Never thought I would make it to 61 after my diagnosis way back in 2011-12.
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I have been on perjeta and herceptin for over a year now, with good results. The problem is I have developed neuropathy in my hands and feet. I am taking gabapentin but not working well. Has anyone else had this problem? Thanks
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hi reneeswan i've been on H&P for going into my 4th year and doing very well. I too have neuropathy in fingers and toes. Best thing I found is chondroitin & glucosamine supplements. it has helped all my joints tremendously. best of luck to you.
pwilmarth do I take it you have a corgi from your pic?
Peace to all
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positivenegative
Yes I'm a Corgi lover. I'm like Queen Elizabeth - I love the breed and at one time I had four! Queen Elizabeth once had 16 but I understand that she's cut back on breeding them due to her age.
While this isn't a picture of one of mine, it reminds me of my oldest male corgi - who is now 11 and half years old. I still have another male who is 10 and half years old. The other two were females, one passed away at age 8 (two and a half years ago), and the other female passed away last month, just 3 weeks shy of her 12th birthday.
I've owned Labrador Retrievers, Golden Retrievers and I fostered a Springer Spaniel, who are all great breeds, but a Corgi is such a fun-loving, playful dog - and full of personality. If you have one, you know what I mean
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Reneeswan - yes, I developed peripheral neuropathy, too. I've used gabapentin as well as alpha lipoic acid - which they prescribe in Germany. And I take a Vicodin at night, which helps me sleep
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