HERCEPTIN and/or PERJETA Threads
Comments
-
I have searched a thousand times for the cause of my various Symptoms but never has therapy really been changed apart from spacing out HP a bit.
My scans seems to be stable just some radiation necrosis in my brain they watch since over a year which seems to be partially resolving BUT i am experiencing a flackering in my left vision field since a few month - although there is no progression. Combined with the tickling nerves in my face and the bad Fatigue I am totally stressed out as my face feels kind of numb too.
neuropathies get worser each time plus I have worsening breathing issues. Knees and feet are numb aswell. Is anybody experiencing the same issues? I feel so exhausted, all these Symptoms scare the crap out of me.I have this feeling Like having edema everywhere in the body on HP. Does anybody have similar issues After just 3 our 4 years on HP?
0 -
re: flashers and floaters in the eyes can just be a part of normal aging, per my ophthalmologist. I started getting them a few months before diagnosis and had an eye exam. I was in my late fifties. Nothing disturbing was found. Had a brain MRI after I found out I had cancer...no brain mets found.
As for neuropathy, I've been neuropathy-free pretty much BUT lately when I lay down at night the soles of my feet are very tingly and sometimes I get a weird shooting pain....I do wonder if this is a drug side effect.
my knees feel awful and I get muscle cramps at night too.I am also NED right now...I tend to blame my side effects on anastrozole but could also be the H&P
Edema can be a symptom of cardiovascular issues...I assume you’re getting regular echocardiograms
0 -
Hi everybody! I have been MIA for a long time....I read through this thread to catch up and was happy to see you missed me but sad (understandably so) to see you were worried! I don't know how time got away from me. I had that Spinal Fusion surgery last April in the middle of Covid, which was rather stressful... and although it was very successful and I am pain free in my lower back, I was pretty much down and out from March - May and not a happy camper at all. We had an okay summer, all things considered... some camping/hiking/short trip to Montana.
I may have a little no so good report, although I am not sure yet.... last June my TM's were elevated, which they haven't been in 8 years. They were at 70, so not horrible and she thought that maybe they could be attributed to inflammation from the surgery I had just had. I had a scan and nothing - no cancer - so my MO wanted to watch for 3 months or so. In September I started having some difficulty breathing, although it was/is only when walking uphill... like hiking... or up hills in my neighborhood. Went back - TM's were again elevated but the same - 70. Scanned again and this time she saw a Pleural Effusion, although I have had a PE this whole time (like for the last 8 years) .... it's almost always noted in my scan reports. She thinks this is the cause of my shortness of breathe, plus I am coughing... that started about mid September too. (I am sure people think I have Covid) She put me on Lasix, which has helped. Breathing and cough better. I go back Tuesday for TM's and an appointment, She recommended staying on Herceptin and being a little more diligent (like every 3 weeks, which those of you that know me know I don't always do but it's worked for me for 8 years) I am now getting the injection vs. infusion - I have been for about a year. I was really pretty good for the last 12 months and really only missed the months when I couldn't get out of bed.
So anyway - there is a chance this could be progression.... the TM's are an issue. But - here is my question for anyone .... I have been reading alot about Hylecta - the Herceptin in injection form - and literally every website I have looked at indicates that some of the main side effects are shortness of breath and coughing. That doesn't seem to be true for Herceptin infusions, but I have seen 5-6 websites that document that. Does anyone know anything about that or have had a similar experience? I am a little irritated that when I saw her last she zeroed in on the PE, instead of talking about the fact that maybe it was a side effect... I had just recently switched.... but then again I don't think that would elevate my TM's unless the Hylecta wasn't working well for me.
Moral of this story might be - if it ain't broke, don't fix it.... my irregular Herceptin injections were working just fine and then I switched and now this. Ugh.
So I go again on Tuesday, and I will update everyone then. So glad to be back and see all of your "faces" again!
XO
Andi
0 -
Dear Andi, I don't know you but as I read all of this forum when the hell broke loose, I feel like I know you for years, and you were always one of the biggest inspirations for most of us - that is why people got worried when you were away. From what you wrote it is very hard to think that you have progression. Ehm... PE is a known side effect from chemo, radiation or MABs, my wife has some of it too. I think if next scans show nothing (which they will!), could you switch back to Herceptin IV? Saulius
0 -
Andi, so glad to see you and glad for you that you’re getting some relief from the surgery you had. Sorry to hear about the rise in TM but it very well could be inflammation, hopefully that is the right explanation.
I started getting the Herceptin Hylecta in March. I haven’t had any serious coughing but I have felt some shortness of breath at times, not explained by activity or anything else. I use a pulse oximeter to monitor blood oxygen levels since COVID but my readings are always normal, 98 or 99
Also, some annoying side effects have come back...watery eye, blood caked up in my nostrils . that whole watery eye/ bloody and runny nose thing went away after my first year of infusions but has started again with the hylecta. Also feeling some neuropathy in my feet, not serious but noticeable. So...maybe due to the Hylecta or just cumulative side effects...hard to tell.
0 -
This is an interesting discussion about the Hylecta. Last spring, when I was switched to it, I also questioned whether it truly was the exact same effectiveness and side effects as the IV Herceptin. I was assured it’s the same so I reluctantly switched even though I still have my port accessed for my other infusion every third week. I’m also in the “if it ain’t broke” school of thought. But, the cancer center was trying to keep people in the infusion area for as short amount of time as possible during COVID which I can respect and appreciate. But now that you raise it, I’ve also had more coughing in the past several months since switching though my other treatment drug can also cause it. It’s always difficult to know what drug causes what side effect. That said, I have also noticed a slight increase in neuropathy in my feet. Hhmm. I’ve always thought that post-covid, I might try to switch back to Herceptin infusion.
0 -
I have also been on Herceptin injection since March. I’ve been on this drug for 3.5 years now. I dropped Perjeta in March and still had a good scan in September. Last few days I’ve had some unpleasant neuropathy but it’s still intermittent. However it does worry me in case I lose grip etc.
Had my injection today and have agreed to discuss moving to 4 weekly tx. I now this has come up before but would welcome fresh comments/ views on this.
Liz x
0 -
Hi Liz
It is scary that even with dropping pertuzumab numbness keeps developing.🙁
0 -
after four years of living with her2+ Mbc, I am facing first progression. Chest Ct scan in November has shown an enlarged axila lymph node on the side of mastectomy, it has grown from 5mm to 9mm in a year. Four years ago, My mbc diagnosis also started with three abnormal Axilla lymph nodeI on the same side, but because later Pet ct scans found mbc at lung, so no surgery was done on the lymph nodes.
I went to have ultrasound today to examine this axilla lymph node, radiologist suspected it is cancer, even though it is only close to 1 cm, in his own words, it doesn’t look like normal lymph node. I have to find out from my oncologist what to do next. I am really hoping not to switch away herceptin/perjerta since all lung modules have been well controlled by this combo. I never missed or skipped any herceptin/perjerta treatments in last four years. I have feeling that my oncologist is going to order a biopsy, maybe some other tests. My questions is if I should push for treating this lymph node as a local/regional disease, just have a surgery to remove it, maybe followed by radiation. If you were in my situation, what would you choose to do next, in terms of treatment options.
Recent ca153 is still low below 5. So i was really off guard when receiving the ct report. Just two weeks ago, I was almost confident that I would live with Mbc for many many years.
0 -
Dear Cheesyfroggy, do they see any nodules in other places (you said lung nodules were well controlled - that means they are "stable" or "gone"?) and have they not progressed, only that lymph node? Which level is lymph node at - I, II, III? If biopsy is positive for C, and local treatments are possible, and doctors agree, I'd definitely go for local treatment (SBRT, surgery, anything else). If you have will and power, I am always very much for aggressive approaches. I also don't know how closely your doctor monitors your CA15.3 but in my wife's case this marker does not show anything - it was perfectly stable and at 14 (like always) with huge IBC progression, so, basically, it is not useful for us:/ Saulius
0 -
Small scattered Lung modules can be found with ct, in the size of 3-5mm but they have been very stable in last four years. Last Pet ct has shown that they are not active, but it has been over a year since I had last Pet ct. No new nodules are discovered in last four years . Maybe I should have pet ct to see if these noules are becoming active again?
I don’t know the level of this Axilla lymph node. Is it something that I need to have biopsy to find out?
I am checking ca153 in every h/p infusion. Even though it has always been in normal level for me, I did see the trend of it coming down from 13-14 down to 6-7 in the beginning of treatments four years ago and it further came down to 4-5. I have read something called liquid biopsy, but my doctor had never ordered this test for me.
0 -
Hi All,
Just reporting back in and I am afraid my news is not great. Last appointment - TM's still rising... they went from 70 in Sept to 98. My oncologist is still unclear about where she thinks the cancer is.... last CT she had indicated a Plueral Effusion, which I think I mentioned, and she is now saying in the "lympathic channels". I have another CT today. I still have pretty significant shortness of breath- some days worse than others, but enough that I definitely cannot do any kind of work out. The really bad news is that she switched me from Herceptin to Kadcyla..... she wants to see if that is going to make a difference and bring the TM's down/breathing better/clear up anything additional we see on the CT scan today. I feel like Herceptin (and you guys!) are like old friends! Ugh. If all goes well with Kadcyla and it brings it back under control, she said we could think about switching back. I know some have done that, but I am a little skeptical. I had my first Kadcyla infusion last Wednesday and it's been much harder than Herceptin, which she assured me was only "temporary" and that my body would soon adjust.
Anyway, I am not leaving this thread!!!! I will check in with all of you to see how you are all doing... hopefully you will get as many good years (8!) or more from Herceptin as I did and maybe she is right, and I can really return someday.
XO
Andi
0 -
oh Andy, sorry to hear that.
I guess we all hope for miracle- specially as some do seem to manage - to be on or even off it for a normal lifespan. I do not even want to think how you mist be feeling, commiserations. I wish for your next phase of treatment to be as uneventful and long as previous !
0 -
Hoping Kadcyla does it’s job , Andi, and gets you back to where you want to be! Please do keep us updated in this thread
Cheesyfrogg, sorry you are dealing with this, I feel that if if you have just one area of progression, local treatment might be preferable to changing medications. I would pursue that if I were in your shoes. Wish you the best and keep us posted.
0 -
Cheesyfrogg, I second Olma61 - biopsy and local treatment is the best choice if possible. Herceptin-Perjeta is a too good combination to loose if it works. It is always hard to talk about tumor markers though, and even in guidelines it is said they cannot be used as a main indicator for progression, especially when they are in the normal range.
Andi, as PE is causing shortness of breath (how many millimeters of fluid do they see?) and CT is clear of any other indication, it is hard to believe it is cancer. Was your metastatic site lungs? Could it be some infection or side effects, or your MO is completely excluding this (if not, then what about antibiotics?)? It is so hard for me to believe Herceptin suddenly failed after 8 years. You are surely not only an exceptional responder, you are an absolute outlier!
Saulius
0 -
Andi, so glad to hear from you. I’m not on the forums very much these days but had noticed your absence. So sorry, though, to hear about your progression. I have a friend on Kadcyla and she’s been NED for a couple of years with it. Biggest thing she says is headache so she gets an extra bag of fluids with her infusions which she says helps a lot. On the shortness of breath., I’ve been reading Breath by James Nestor. Really fascinating book about the science of breathing and how we can improve our respiratory health. Hope the Kadcyla does the trick in getting you back into better breathing.
0 -
Hello everybody!
Saulius - I am afraid I am not an outlier... I really do have some progression in the lining of my lungs. We could finally see it on the CT scan, so I have officially been switched to Kadcyla. However, you wont' be getting rid of me! I need to check in on all of you. Apparently it is "only" in the lining of the lungs- no liver or bone or actual lung involvement, so that is the good news. My oncologist feels that the Kadcyla shoud work quickly.... I am really hoping so because still short of breath. My mets were not to my lungs originally - all over my spine, etc... and a couple spots on my liver. I have always had the PE and now it's grown a little.... I wish it was an infection - even Covid - but it's cancer!
DGHoff - thank you! That is encouraging. I joined a Kadcyla Facebook support group and many of the women on it have been NED on Kadcyla for 2 years... 4 years... even 7-8 years, so that gives me hope too. I have heard that extra fluid helps, but right now I am on Lasix to get rid of the fluid in my body and help my breathing, so probably not a good thing to ask for yet. I'll have to look for that book. I am SO tired of being out of breath. The first treatment wasn't too bad - I had a couple days of fatigue and some stomach issues, but nothing horrible.
XO
Andi
0 -
Dear Andi, oh no, we do not want to get rid of you - no way:) I am also sure Kadcyla will kill of these suckers quickly! All the best and keep us informed, Saulius
0 -
sorry to hear of the problems raised in different threads. Andi, If you have pleural effusion in the lining of lung can they not drain? This would help with the breathlessness. cheesyfroggy, I had over 20 tumors in both lungs. All stable (or scar tissue) for coming up to six years. I just have one tumor on a lung nodule and its stable. What I find fascinating is your TM. Mine have been between 25 and 30 for past 4 years when I became aware that I could get them. I had breast to lungs and spine, sternum and hips. I have been stable as already said for coming up to six years in March. My TM’s seem very high compared to yours!!
0 -
Andi, Arc66, Saulius,Olma61,
Thank you all for chiming in to provide your advice, last month, I had ultrasound guided biopsy on my axilla mass shown up in November CT. It confirmed it is same type of bc, er pr negative , Her2+. The size is 1cm. Interestingly, it is not a lymph node. Rather, it is a single mass. It is not palpable, it is pretty deep in axilla area. Saw surgeon on 12/30, she thinks it is a new primary breast cancer and recommended mini mastectomy to remove accessory axilla breast tissues that was left behind on first mastectomy 8 years ago, followed by radiation. She will remove sentinel lymph node as well. If it turns out to be positive, she thinks it is better to also remove level 1&2 lymph node removal. I have been on perjerta and herceptin since October, 2016, but still developed this new mass. So I am thinking if I should switch to TDM1 for some months. Will discuss with my oncologist next visit. I have to pause perjerta herceptin for one time because the meds may cause complications for the surgery. Surgery date is probably late January because of no OR availability at earlier date.
Wish everyone a healthy and happy new year of 2021.
0 -
Sorry to hear it could be a new primary but good luck with your surgery and new treatment plan, whatever it turns out to be.
Happy New Year to you too!
0 -
Dear Cheesy, great reaction to evolving things. I think... first surgery, then you'll see what comes next. I think you should want to be on HP as long as possible. One lesion might not mean much, maybe just one contained mutation, which will be cut out. HP has been holding you very well, so try to stay on it. D-DM1 is an ADC, so a targeted chemo, and is harder on your WBC and body than HP. Happy New Year to everyone. Saulius
0 -
Question about echocardiogram results and halting Herceptin. Just had mine last week. My ejection fraction is normal as usual but my diastolic dysfunction has gone from Grade 1 to Grade 2.
Is ejection fraction the only metric that determines a halt in treatment or has anyone had to pause Herceptin due to a result like mine? Not seeing either of my docs til later in the week and this is weighing on my mind a bit.
Thanks for any feedback you all can provide
edited to add - Dr google seems to suggest that LVEF (ejection fraction) is the sole criteria , but I value input from anyone who has more kno0 -
Olma - I think that is correct - LVEF is the determinant. But it's been awhile since I thought about it. HOpe someone else that's been more recently involved will chime in.
0 -
thanks minus two. I will update after I see my doctor this week in case anyone else wonders about this
0 -
HI all. I am just checking in - I know it's been a while. So, I started Kadcycla/TDM1 in November....had two rounds of it - three weeks apart, and it totally failed. Like, 100% failed. My oncologist was shocked. During this time my breathing and overall health became worse and worse, to the point that right after the holidays I ended up the hospital for a couple days. We did CT scans and a bronchoscopy to try to determine if perhaps my cancer, or this new cancer, is no longer Her2+ but there wasn't enough fluid to do a biopsy. ( I feel like I am drowning and meanwhile they can't get enough) So we did a Foundation One blood test, which should come back in the next week or so. In the meantime we went to Plan B which is Xeloda, Tukaysa and Herceptin, as usual. I am on my second "cycle" of this treatment and I should find out Thursday if it's working. My cough is gone, which is a good thing and I no longer feel and sound like I have pneumonia, but I am sure my breathing is better. I have been on oxygen for the last month so I could be addicted to it!
The first cycle of Xeloda/Tukaysa plus Herceptin was TERRIBLE. It felt like IV Chemo all over again. No appetite, no energy, slept all the time, just felt horrible. I was freaking out. I was told that it "gets easier" ( I hate it when people tell me that) and this cycle is better. I still don't have an appetite and still feel fatigued, but not as bad.
I'll keep you all posted. How is everyone doing? I miss this thread!
XO
Andi
0 -
Is there anybody here with Brain mets that have remained on H&P?
0 -
hi kissingbooth, cannot answer your question but here is a thread for brain Mets sisters specifically, maybe try asking in that one also:
https://community.breastcancer.org/forum/8/topics/777599?page=251#post_56373700 -
kissingbooth, yes, I remained on H&P for 3 years after brain mets, which were treated with radiation. Recently, I switched to the Herceptin, Xeloda, Tukysa combo at my MO’s recommendation to better control the brain and reduce the need for radiation. H&P does not work on brain mets but the new combo does for many.
0 -
Dear Andi, uh, what a rough time:/ It must be overwhelming that such drug like T-DM1 fails so quickly when others have long long runs. I wonder if you can come back on it when things are stable because Xeloda/Tukysa/Herceptin is certainly a more difficult regiment. Please keep us posted and we are very happy that at least you feel better and more secure today... Saulius
0
