HERCEPTIN and/or PERJETA Threads
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There was an interview with Dr. Vincent DaVita on OncLive and he discussed this idea - cancer treatment has advanced and there's a group of patients who get to that glorious place of No Evidence of Disease and then there's another group who they can't call Cancer-Free, but they are living normal lives with stable tumors. All of us want to be rid of this devil, but some of us will always have some evidence of the disease. The questions is: Is the disease under control?
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I was diagnosed 1 year ago on June 23 after my initial high risk screening MRI, shortly after found to be stage 4. I feel so good now, after 8 rounds of THP and more H&P. Can I relax and put this behind me? I'm back at work which feels so normal. Genetic testing is in the works and should take about three weeks. I have 5 children and wish them longevity genes not these stupid beast cancer ones!
We are all doing very good and DG you will too!
Hugs to you all
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Congratulations josalive and scrunch, that's great news for you both! Happy 4th tomorrow to all the U.S. ladies, but wishing all the best to you all!
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Great news, Josalive! I can't believe you had a doctor that gave you 14 mo to live. I get scans every six months now as well (CT and Bone) and it's so nice to have the break in between....I do get anxious in those weeks leading up to it, but since we also get our tumor markers checked every three weeks (at least I do), that helps. I see you are in Denver and wondering where you are going for treatment?
Hope everyone else is having a great week!
XO
Andrea
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Thanks Andi -
I have seen quite a few doctors here in Colorado but I currently get treatment at RMCC in Littleton (close to you!) because my doctor moved there. My initial doctor (the one who gave me 14 months to live) was also with RMCC but I didn't stay with him long (for obvious reasons). I absolutely love my oncologist now and I've also seen Dr. Borges at CU (involved with all the ont380 trials). My doctor is retiring soon so I'm on the hunt for a new oncologist if you have any recommendations :
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Hi Josalive - Dr. Borges is who I go to! I LOVE her. I was also at RMCC initially, but didn't like my oncologist, even though he is rated one of the top in Denver. I also saw an oncologist at Porter whose name I can't remember, and she was helpful as she is the one who insisted that I was Her2+ and submitted test after test until one came back positive and she was able to get me on Herceptin. A friend introduced me to Dr. Borges and I have been with her for almost three years and can't recommend her enough. I love the fact that she's involved in research and clinical trials.... I feel like I am in good hands. I got to both the UCH main campus and once in a while the Lone Tree facility, as it's a little closer to my house. There is another one who I know is highly regarded.... Kavagi or something like that? I am sure I am spelling it wrong. I can get the correct spelling for you. She is highly regarded, although now that I am thinking about it, she might be retiring too.
XO
Andrea
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That's so funny Andrea.... Kovachy is my doctor
. It looks like you and I found the two best in Colorado. I will likely move to dr. Borges after my onc retires so maybe I will see you in the treatment room for our Herceptin. Thanks for the recommendations0 -
Hi All Perjeta/Herceptin Folks,
( My spouse went to Aspen/Basalt/Denver...loved it.. I have trouble with higher elevations. )
Just a question....
What's the longest anyone has been on Perjeta? I am 65, in good health, good ECHO, do yoga,acupuncture,etc.
Currently I am NED after an initial Stage III ( very large tumor) BC in 2012, rt mast, nodes, neovalent TCH chemo, rads, then NED, port # 1 out and propylactic mastectomy in 2014.
Reoccurance in late 2014-5 with intradermal ( beneath and on the radiated side of mast, plus subclavian nodes, etc.) , four rounds of a ...taxil..can't remember which one...,Perjeta,Herceptin. Had great results immediately.
Off ...taxil in April 2015. On reduced does of Herceptin/ Perjeta since 2015 .Usual symptoms ( see previous posts if needed. ) Very manageable, but changing my internal structue and giving me a spare tire and lipedema on legs ( pre-lymphedema) . Have some arm,chest,axil lymphedema from previous mast/nodes/rads.. Had some neuropathy last cycle as we left off the benydryl drip. This is new for me.
Clean scans whole time. Ready to stretch out scans to 6months, and drop Perjeta and stay on Herceptin.
Tired of being on Perjeta. Was on Herceptin for a year and just had Herceptin drip and thin hair.
[Took a vacation in August 2015 for a month from PH and felt great. Ready to take another one. ]
Have my regular CT tomorrow, then labs/doc on Wed, PH on this Friday. MO supportive of my decision.
Any thoughts? Insights!?
not so Newbie20111
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I lived in the Basalt area for many years and worked in Aspen; beautiful area. I only had Perjeta for the six rounds of chemo (TCHP) and then stayed just on Herceptin for a year which I completed on 7/1. No more Herceptin drip, yay!
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newbie - The CLEOPATRA study is where most of the data that oncologists use comes from. It found a overall survival rate of 56 months on H&P, which is 4.5 years. So we know that some people have been on it for at least that long, and for some people, the answer is longer, because 4.5 years means some people have been on it for longer and some shorter.
The recommendations after the CLEOPATRA study was that, if you have metastatic breast cancer, you're on H&P until progression (or you die of something besides cancer - which some oncologists define as "cure"). Oncologists don't have any supporting data about the safety of stopping these two drugs once you're NED.
So, when oncologists stop either of these drugs before progression or death, they are basing that decision on other factors. There is some discussion about refining the choices for who gets just Herceptin and who gets both H&P, because many women did well on just Herceptin. I know that they are doing some retrospective studies looking at the data and trying to determine if they can refine their decision making process.
Personally, I've been on H&P for 17 months. I've discussed this with my oncologist and she has said the same thing - we have no data supporting the safety of stopping H&P. They know that the risk of recurrence with HER2+ breast cancer is high.
So the only question I would have for your oncologist is what's the next step if recurrence happens?
Prior to Perjeta, I believe there's some women who have been on Herceptin for 18 years. So the answer is that a person could be on the drugs for a very long time.
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Hi fellow H&P lifers : )
As usual it's been awhile. I just wanted to provide food for thought about Heart Ejection Fractions again!
When I started H&P mine was only about 55 and I was in quite good shape judging by by athletic endeavors. I've been on H&P for 2.5 years.
My EF has dribbled up and down from 55 for most of my echoes although once fairly early on it was 60 and for the last year it's been under 55 and then in April this year it was 50. This low number caused my MO to call the cardiologists in alarm--is it getting too low? I wasn't concerned about it because I've heard the spiel from my beloved who is a heart surgeon.
Well, I had another one done on Monday and it was read at 65!!!!! Wow! H&P are really improving my heart function!
Of course I asked DB what was going on. And he said something like (well, with more doctorly sounding words that I forget)
If you had an ECHO every day it would bounce around within 10 or more points. It just goes to show you how subjective these numbers are. I wouldn't worry unless it dropped to 40. Heck I have patients who are in the 20s and 30s.
I'm not saying H&P can't adversely affect heart function but it often isn't worth worrying about EF numbers and sometimes MOs raise the alarm when they are looking at an artifact of a not very accurate measurement.
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Mitch thanks for your feedback.
I hear what you're husband is saying. The problem for our MOs is that we now have a standard of care which the docs have to follow as well as the pharmacists who mix the drugs. I was overdue for a MUGA by a few weeks and the pharmacist was fussing.
I agree with you and your husband that these numbers may not be significant, but our ladies who are new to this whole thing get frightened because they think someone is going to stop their treatment. Your husband's words should give them some relief from their anxiety.
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on h and p for (will be) 4 yrs in October. Clean scans for 3 yrs. if it ain't broke, don't fix it
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Miche - Thank you (and your dh) for that information. It is so easy to obsess over numbers like these and like you said, they are somewhat arbitrary.
Kjones - How wonderful! I hope we are all following in your foot steps. I'm coming up on 2 years. No "clear" scans yet, but stable is good enough. So thankful for my h&p.
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Oh K, so happy to see your post. Hope for all of us - onward! SU
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pwilmarth--it's not that the numbers are insignificant but perhaps the take-home is not to worry and perhaps have a relationship with a cardiologist if your numbers bump around in the low range as mine typically do (until the last). There are just too many other things we all worry about and this is a hammer we don't need over our heads. There are certainly people who have to take a break due too heart problems but the EF of 50 is rather arbitrary and the oncologist is not a cardiologist. If you get a reading under 50 have another ECHO or MUGA or have the one you didn't have (after you clear this with insurance, or not) before taking a H&P break.
Kjones you must be one of the longer times on H&P. Have your SEs stabilized with time? Yea for you for clear scans. How often do you get them? I haven't had a scan for a year and a half though I get tumor markers checked every 9 weeks.
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Miche - Bingo!
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miche--yay! Love being in the longer category! I would say the se's are the same. I have changed depression, anxiety meds and added Ritalin, so this year has actually been my best one yet (knock on wood)! I get scans every 6 months or sooner if I get anxious about some symptom...my mo doesn't do tm's. Or at least he's never shared with me. I get labs drawn every 9 weeks also.
I am more of a lurker these days. Out living life! I hope these drugs do the trick for each and every one of us!! Much love
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It's great to read everyone's thoughts, strategies, and good results. And I'm always thinking of those who have challenges. I'm coming up on a year since my de novo diagnosis and am so grateful for H&P--and the support of all of you. Here I am at today's infusion. What a year it's been!
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Josalive – My daughter Dani was just 25 when she was first dx, then 2 yrs later BAM, and 2 little girls. I totally tip my head to you. It's always devastating, but the very young ones, she is so frustrated, just started to live. It's so important that you have a husband that supports you, it's everything. Her hubby is a doll, he will do anything for her. He does not have the time(literally) to do the homework, or get all the clinical stuff, so I try to help with that, and of course we all help with the girls. So happy for you.
I heard about these ONT380 trials, do you anything about that? First of all so happy for these wonderful news. It gives hope to all. Josalive, can you tell me the RAF, what was the decision behind it? And how many tumors did you have? And no chemo? And did you ave a biopsy? Sorry, I may have missed this info before, or just plain can not remember. My mind has not been the same, with the pressure of getting Dani to a good doc. And soon. SO now we have an appointment this week with a great doc in a major Center, so finally I am getting my senses back. As of the latest PET/CT she has 2 liver tumors about 1.5 cm each. So if I could be prepared of what can I ask of the doctor for this particular tumors, she has extensive lesions throughout the bones, and skull, (which we will be seeing a Rad Onco for this also).
Bstein I was wondering about the genetic testing thing? Dani had BRCA1/2 negative done back at the beginning of DX, they did not talk about PALB2 in those days, just a few yrs ago, did you hear a/t about it, should I torment her more for her girls and her sisters sake? I can imagine your anxiety waiting for the results. Wish you the best.
Andrea it's so "normal" to not be able to get it all in the beginning for sure. Even now, if I reread something from a few mos ago, I understand it so much better.
Actually I just came through the first Pathology report from Dani's lumpectomy it says: Invasice Ductal Carcinoma, 3 of 3, the whole 9 yards, she had the most aggressive, and then in the end it says Solid type with Lobular Involvement. Could someone tell me if that means it was Invasive Lobular also? They never told us that, they just kept saying it's very serious, very aggressive. So weird…AND… on the first PET around time of first DX, and 2nd a month later, I reread and saw things as: Could someone also explain if it says hypermetabolic activity in the superior mediastinum, small lymph node and it measures 7.2x6.6 mm with standard uptake OR hypermetabolic foci in the right chest ,hypermetabolic activity in the bone marrow. Hypermetabolic activity in the T12 vertebral body. And so on and then it says suspicious for bony metastasis. And in the MRI it says there is small lesion in the T12…so she was metastatic from the get go? I am confused? This findings were just a few days after lumpectomy.
SO and this week we have the appointment with someone that we were waiting for a long time to get to see. She seems to particularly work with metastatic BC. Anyway, she was away till we see her this week, but she emailed me after seeing ALL the data, she would talk to us about this Tuesday:
The neratinib and capecitabine vs lapatinib capecitabine or the ruxolitinib and Herceptin – did anyone here ever hear about it? I am afraid, the 2nd option is out, because she was on these separately and she might not wanna let her try again, Xeloda alone Dani was on already also, but not with this combo and the 3rd one, she is on Herceptin now, I am not familiar with the ruxolitinib.
Of course any opinions or questions that I should ask would be truly greatly appreciated.
Dani is now on Ibr/Letr/Herceptin ( she is really ER+PR+(1%)only HER2+) but none of the HER2+ tx were taking for her, last year she tried Herc/Perj and had progression. So the current doc tried this. And with this she got the 2 liver spots, and increase in the skull lesion, but not much progression on the bones. Pretty much the same.
TIA!!! Sorry for giving so much info, but this is been brewing in my mind day and night. Tuesday is the BIG day. So gotta be prepared.Bluefrog HELLO!
BJsmiller, much to smile about! Good for you.
DGHoff so happy for you. So no taxol? Great.
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hi momallthetime -
I'm so sorry to hear about your daughter's situation but it sounds like she is so lucky to have you in her life. I'm not sure how similar my situation is but I'll tell you about it in hopes it can help you some. I was diagnosed with MBC right out of the gate (ER-pr-her2+) with a small lump in the breast, no node involvement but a 2.5 cm single liver lesion. I did TCHP for 4 months and it had resolved from what they could tell on the scans. I decided to do RFA since it was described as an easy, outpatient procedure and very effective at Clearing out that spot without many side effects. I just wanted to be sure everything was gone
Depending on the location of Dani's liver lesions she may also be a candidate for RFA. They do it laparoscopically and essentially burn that spot in the liver killing everything in a defined radius. It was a relatively easy procedure. She may also be given the choice for radiation to those two spots instead. Having tumors progress to the liver sounds scary but the liver is resilient and large and you can access it quite easily in most cases.
I have 3 little ones of my own at home so I know how hard this is for a family like yours. I wish you the best of luck for Tuesday. Please keep us upated. Dani and your family will be in my prayers.
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I was originally on H&P every three weeks, and then my oncologist dropped the Perjeta... about two years ago...so just Herceptin since then. I actually got to take a "vacation" from Herceptin for about 5 months.... side effects were increasing, and she wanted to give me a break. I have had clean scans for over three years... I get them every six mo, and tumor markers every three weeks or whenever I get my Herceptin. Also a shot of Xgeva for bone mets. My oncologist didn't feel there was hard evidence that Perjeta increased odds that much, and she felt that was where most of my SE's were coming from. Since dropping it, I have felt almost "normal"....although I think I probably don't remember what "normal" feels like.
XO
Andrea
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Hi all. I learn so much from lurking but today I would like to know who else experiences the following as I am miserable with the symptoms.
I have had muscle and bone pain and stiffness since starting herceptin perjeta last November. The pain has progressively increased to the point that now I have pain in muscles every time I move my arms - different areas (muscles) for different movements ( shoulders, forearms, elbows). My legs also hurt and I have severe stiffness in one knee (osteoarthritis progression confirmed by scans), and feet/ ankles. I was commenced on Norspan patch 5mcg then 10mcg. I Take panadol osteo 3 times a day since I had to stop the anti inflammatory due to increased reflux (on Nexium 40mg). I get no sleep lying on either side due to my sore muscles but have never been able to sleep on my back very well, so I am very tired. Is it possible that herceptin perjeta can cause something like myalgia rheumatica or do I just have a low pain threshold and this is simply the muscle and joint aches and stiffness referred to in the patient literature? Thanks for any input.
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hi Bella, yes, herceptin can cause that severe of symptoms. I had horrible joint and muscle pain. I was fortunate that I had been Ned for awhile, so I stopped treatment in Jan , 2015. The pain got better after stopping, but still have some pain and weakness in my legs
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Andi - wow, congrats on your great response to Herceptin. I wonder if you would mind if I asked you a few questions. Were you NED when you took the Herceptin "vacation", and did you have any progression while you were off the drug?
Bella - I'm so sorry for the pain you have been having. I noticed that I get very stiff at my desk job. I have to remind myself to keep getting up now and then. I actually feel best after I've worked in the yard for an hour or two. I feel stiff in the morning too...not pain like you describe, but stiffness and achy joints. It was worse when the weather was cold. You should definitely make sure your doctor is aware that you are having these issues. Wishing you the best.
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Hi everyone, I've been trying to not freak out but now that is time for my next treatment I'm getting worried.
Last time I had perjeta-herceptin-navelbine, I had perjeta first then herceptin, and when finishing the herceptin infusion I felt a little short of breath, so started trying to take deep breaths but ended coughing every time. We told the nurse, checked my oxygen level, said I was fine and watched me closely and proceeded with navelbine. Came home and everything back to normal.
Wrote to my Dr about it, nurse called to tell me they weren't worried and they were going to give me premeds from now on. I had an echo in April and due for another one soon.
Ugh, any similar experiences. I hope not to have to change treatment yet...
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Hi Everyone, I've been reading this thread today. Last time I met with my MO she said that she has been getting push back from insurance companies approving Perjeta past one year as there are no long term studies of it's effectiveness. I just wanted to let you know if suddenly the Perjeta stops you can ask if its a medical or insurance decision. Hope everyone is feeling well.
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Ok major migraine, check! But I do wanna update everyone, so sorry if you guys are in some of the same threads.
Appointment went well. Regimen, Navelbine 2 wks on/1 wk off with Herceptin every 3wks, and Xgeva 6wks. That's IT. What say you?? I don't recall who is on Navelbine, I think I just read about it yesterday. I have to reread some threads, but cannot do it today, that's for sure.Was a bit of a anticlimax, about the Treatment. Xeloda maybe some other time, and she has some clinical trials in mind and biologics in the future. What's biologics, could not understand. She's not into Immunotherapy for Dani's case, it's not proven yet.
Well during the physical, ANOTHER node was found under the axila, REALLY??( what the…) so off for a PET/CT she goes again, probably still this week, waiting for approval. And I guess then it will be definitive. Still have to see Rad Onco this Friday. Maybe they will keep Letrozole. Ibrance is a gonner, she does not think it's helping in Dani's case. Liver depends what this PET/CT shows. If it's next to each other, if it already got larger? Ablation, maybe? Z, I have to ask her about the Alpha lipoic Acid. .
She did see in F1 Dani may have the mutation TP53, she wants to do a BT to make sure it's in the tumor and only in the tumor not in the whole body(which she does not think it is, but just to make sure for the sake of the relationship with kids/sibs, to make sure it's not Genetic).Otherwise she does not think there is much to get to TP53.
Off to Geneticist we went, she will do the BT when she comes in for the infusion. Also of course the newer mutations, like PALB2.
Also in one of the threads I remember much convo regarding Luminal, yep, she weighs this. Dani has Luminal B, and that says a lot about the status.
She can't do Tykerk/Xeloda, bcs in that trial if u were on Tykerb already then it's a no no.
Everyone it's been a long day, but I thought of you guys the whole time. I was able to understand a lot due to our conversations here.
Check on you tomorrow! Great night to everyone.
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Txmom hey thanks for the info.
Gramen now I remember maybe I read your thread yesterday about the Navelbine? What can you tell me about it? Doc said that is could be dangerous as it go into veins?? But Dani does not wanna get a port again! It's a constant reminder for her. (I think she should, but I need to be around, u know...so i gotta thread lightly) Are you tolerating it well? What meds could they give you prior? Some anti anxiety? Bcs of the shortness of breath... Thanks
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momallthetime,
Navelbine has been pretty easy so far, I began my 5th round yesterday (along with perjeta and herceptin). I wanted to have the port reinstalled so bad that the Dr didn't have to convince me, but it has to do with Navelbine been a "vesicant drug", but honestly I didn't look into that.
I hope it is easy on Dani as well. I have very little side effects, I have a breakout: face, chest and neck but I think is from perjeta. No hair loss, just a little thinning. The 2 weeks on and 1 off works out well. I began with weekly treatments but the blood counts tanked, specially wbc's, so that week off helps rebound.
Only premed I take is for nausea. During the first round I took the nausea pill around the clock but not anymore. And you are correct, yesterday we confirmed my shortness of breath is probably anxiety.
I had 1 scan after 3 rounds and it was good, not a slam dunk, but things are shrinking which is great.
Hope this help, sending you positive and healing vibes your way!
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