HERCEPTIN and/or PERJETA Threads
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Thank you mara!
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now i am wondering if perjeta and herceptin only will keep me with no new nodule growth and at least stable? hmmmmm
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DL3 - that is the hope that we all have. The H&P continues to deny the cancer the Her2 and Her3 proteins that the cancer requires to grow, so the tumors will die and no new tumors will grow. It works for a really long time for some people.....but not for others.....sigh! I'm hoping and praying that it will work for all of us.
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Does anyone here experience dizziness or lightheadedness from H&P?
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Hi Ladies,
I am on H/P (without taxotere) since October 2015. All stable. Cramping (everywhere diaphragm, thighs, legs, feet, arms, hands) are the main side effects that I experience but I think that is from the Arimidex. I also experienced intolerant itching (perjeta) on my neck and head (was known to draw blood on my neck from scratching!) but cetrine dihydrochloride (brand rowex) put a stop to that, i take one tablet daily when taking my arimidex.
I have marginal burning sensations in my right foot and arm but that is that. What I do want to share is good news! I personally have met two women who are both metastatic since 2006 and are both on herceptin (only) since then and are both 12 years down the road and still doing well.
The protocol I am on is H/P every three weeks and Zometa every 9 weeks. I had a port inserted on the day I started my first treatment back in April 2015, it was one of the best decisions I made!!
Anyway just thought I would share that for those starting out. I am approaching three years (April) and still stable.
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Great news FM508. Thanks to almost 3 years of Herceptin and then Perjeta added in 2016, I am still NED from the neck down which is a blessing. The brain is a bad place to have mets BUT I don't currently have to worry about treating mets elsewhere. My RO thinks we will keep me going for a long time since I only initially had one met and the recurrence is in the same area. I had WBR already which made me feel better and we will do local rads to the two tiny additions. Overall still feel great.
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Go Mara!
>Z<
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Z- Just a thought, but the "flank" pain that you have been experiencing could be related to what FM508 describes above. I have cramping/spasms in my feet, legs and sides and back all of the time. As a result, the muscles in my sides are always sore. You could be right about the liver being swollen.....I'm no doctor, but I thought I would throw this idea out for you. I think H&P has more SE's than many of us realize, it is just hard to distinguish sometimes. The standard of care for Her2 is to start with a Taxane plus H&P. The Taxane SE's are so horrible, that a person may not notice the more subtle SE's, until the Taxane is dropped. In my case, I had such horrible diarrhea and cramping involved with that, I barely noticed anything else.
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Thanks Kkenz - It is a challenge to tease the cause of these symptoms out given the disease plus the drugs we take plus the other illnesses we contract despite the fact that we really have enough going on as it is. I am going to my primary care physician to start pulling the string on this abdominal pain.
>Z<
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I agree that HP side effects can be subtle. Most I notice is the odd abdominal pain, worst in the first couple days. Probiotics improved things considerably for me. Only other SEs I notice are hot flushes post infusion for approx 3 to 4 days and the occasional drippy nose. So long as it keeps working from the neck down, I will gladly take those SE.
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Crap, just lost my post! Wanted you all to know I’m feeling much better on 1/3 dose of Herceptin weekly and full dose of Perjeta every 3. Hopefully it will keep those 6 lung mets sleeping. I actually had 5 days last week I felt better than in 3 years. Keeping my fingers crossed
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Beatmon, I am so happy to hear the changes in your dosing have improved things for you. Good to know that if I start having trouble as time goes on, I can make a similar suggestion to my onc.
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Beatmon - How interesting that you can adjust the dose. Glad you figured that out. I can hear your mets dozing ... this will work great.
>Z<
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My name of MJ DeCoteau and I am the executive director of Rethink Breast Cancer.
We are looking for woman who have been treated with Herceptin-Perjeta to talk about their experience.
You can find more information in this posting or please send me a private message if you would be willing to participate.
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Hi all,
I have had a virus and so my HP had been postponed a week. I confess to being quite relieved and have been told it won’t make any difference. Have any of you had the same thing?
Liz
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Did they run your blood Liz, or just tell you not to come in because you were sick? Maybe they didn't want you around other patients with compromised immune systems if you have something contagious. I know that my clinic has separate rooms for anyone who is sick but maybe not all handle it the same way. If your blood counts were too low, it makes sense that they need to wait. I went four weeks between infusions this past round, just due to a scheduling mixup that none of us realized until too late (I had a lot of doctor appointments the past 3 weeks). I'm not going to worry about it.
I've done Taxol alone, Taxol with Herceptin and Perjeta, and now just the H&P the last 3 times. Once we dropped the Taxol from my infusions I'm finding H&P to be very tolerable so far, the load dose hit me hard but that was also my first monthly dose of Taxol instead of weekly. Now it's mainly just the drippy nose and hot flashes/night sweats that I'm not even sure are due to the H&P. Some body aches but my bone mets are extensive so who knows, and fatigue is still a big problem for me but my body has been through a lot the past 7 months so I'm not even sure if that's entirely due to the H&P. Guess we'll see at my next scan if H&P alone are enough to keep things under control.
The only thing that worries me is that I tolerated Taxol well for four months and then all of a sudden my body wanted nothing to do with it, and I'm afraid of the same thing happening with H&P. But so far I'm finding it very doable, hope that it does the job and I can stay on it long term.
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I have been doing this for 5+ years (woot woot!) and have has to postpone treatment for a week several times for various reasons. All will be ok! Keep truckin!! And enjoy the extra time out of the infusion room! ❤️
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I like the HP myself. Same drippy nose as well, worst when I am walking or at the gym. My onc told me the antibodies in the drugs we get are what cause the flushing. I don't get too much of that thankfully. Joints get sore but I just pop ibuprofen with breakfast and go for a walk. Stretching is also good.
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Hi everyone,
An udate on my postponed HP treatment. One week ago I started with a virus that gave me a terrible sore throat. 4 days in and I lost my voice. Treatment was delayed one week.
Things got worse and I developed an ear infection. I have muffled hearing and tinnitus. I literally feel like I am underwater.
Because of these symptoms, my treatment has been delayed again and I will now need the loading dose of HP, 1.5 hours for H and 1 hour for Perjeta. I will be many hours at the infusion centre.
For some reason all this has hit me very hard. I'm almost ashamed to admit this because I had such a great PET scan result. However, tonight I am in pain, deaf and have read that this dreadful ringing can be permanent. I am also absent from my job and pushed back into full blown patient mode.
I know I am having a pity party right now but I can't seem to get a hold of myself and see this as a blip.
Would welcome your thoughts. LoriCA- I presume bloods will be done. Sorry for lateness in reply. Have felt yukky for the last week.
Liz
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Liz, feeling upset at setbacks is not a pity party. It is a valid response to a shitty situation. I hope your illness gets better soon. As far as the tinnitus, try some deep breaths as it occurs and that can make it go away. It will most likely go away on its own since it is probably related to your illness.
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Oh no Liz, I'm so sorry to hear that!! I hate that even the littlest thing can turn into something big and bad for us, but just hold on to the thoughts of that great PET scan and the good progress you've been making even though this seems like a setback. Hope you get rid of all that nastiness and start feeling better soon!
Are you taking anything for the ear infection? I'm surprised that they turned you away the first time just because you were sick without checking your blood. I was on antibiotics for a suspected bacterial infection last year but my blood counts remained good enough that I didn't have to skip any of my weekly treatments. I'm surprised that they haven't already ran your blood to see what's going on. I had tinnitus years before my DX (probably due to a diving incident), it hasn't gotten any worse on H&P and it sure hasn't gone away. I'm used to it for the most part and really don't even think about it, it's mostly annoying at night when everything is quiet. But I know that probably doesn't make you feel any better about it.
I didn't know that skipping two weeks would require another load dose, ugh. Skipping that one week hasn't seemed to make a difference for me, the last infusion was the easiest yet and I'm doing well enough that my M.O. decided I didn't need my next scan just yet. I would hate to do the load dose again because it was hard on me, but the SEs have been fewer with each subsequent infusion.
I really hope they find out what is causing all of your symptoms (and that it isn't treatment related) and get you feeling better fast. Sending over a big hug for you!
Lori
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Oh Liz! I’m so sorry to hear about all you’re going through! Feeling ill is awful! Add in the extra time you’ll have to take for H&P...ugh! You have every right to have a meltdown over all this. Sending you positive thoughts. I really hope you’re feeling better soon. Hugs my friend!
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Thanks guys,
I am learning to live with this hearing loss. It is horrible and limits me in my job. However I went back to work today and feel like I have managed not to let it get to me quite so much.
A doctor tonight said that it would go on it’s own and that includes the tinnitus. He doesn’t think it is an infection? 2 days left in antibiotics now which i may as well finish now. Trying steam inhalation but it does not seem that effective.
Mommy Erin congratulations on your scan. Haven’t we both done well my friend. We supported each other through the hell of those early days x
HP now 3 rd May. I’m told it won’t make any difference to my tx as a stage 4 patient. Missing it makes me nervous though. Am I ok do you think?
L x
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Sorry, Liz, that you are having hearing issues and have had to wait on the HP. My onc has pretty much told me that treatment will follow my schedule, so if we need to postpone a couple weeks here and there because of my life schedule or things going on, we can do it. So long as your PET looked good, I think you are A-OK having it delayed a bit.
My insurance company denied my annual PET because my last CT scan showed no evidence of progression. I guess that is good that it isn't "medically necessary" but still annoying that they get to decide instead of my doctor. Good news is that my CT scan last week shows no progression and my echo was normal with ejection fraction of 58%!
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DG, happy your heart function is normal.
Liz, I have missed HP myself a few times due to rads. It has not caused any problem to date. Am still NED from the neck down. You will be fine.
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Hi all,
I am still struggling with an ear infection and have started Augmentin 625 mg tonight. Tomorrow I am due to have HP after a 5 week delay. Will need the loading dose. Worried that it won’t go ahead now.
Will this mean I may begin to reoccur?
Crappy cold caused this. I am still deaf and it won’t be a quick fix.
Liz
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Liz I'm so sorry to hear that you are still dealing with that. You must be so miserable. I hope the Augmentin does the trick for you, being sick on top of everything else is really not fair.
I wouldn't worry too much about skipping those two weeks. Anyone who has problems with their LVEF has to come off the Herceptin for 4-8 weeks until their LVEF improves and some people need to do that more than once.
I'm starting to worry that I'm not responding at all to just H&P since we stopped the Taxol. I developed concerning signs that my primary tumor is growing again about two weeks ago (skin problem & pain over the tumor site, I have IBC that originally involved the skin but had healed completely with Taxol). We were holding off on my next scan so we could see how I did on just H&P, but if it continues to get worse I'm going to ask to schedule it soon. I hate to even think about the possibility of Herceptin not working and am trying to convince myself that it's just part of the healing process, although I haven't heard of Herceptin causing tumor flare. Anyone have info on people who don't respond to Herceptin? I'm afraid this could mean I'll end up having to go back to chemo and trying to find one that works.
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Hi Lori
Thanks for responding. Yes that helps with the point about LVEF. I’m only 2 weeks past the schedule but hopefully I will get the tx tomorrow. I am apprehensive about the loading dose though.
I was sorry to hear that you have concerns. This disease just sucks when we can never relax. I would wait until you have hard info though Lori before you mentally start thinking about Herceptin failing as hopefully that is not the case.
Let us now how you get on. No doubt I will be posting from the chair tomorrow!!!
Liz
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Liz, all three times I have had radiation, I went without Herceptin/Perjeta for a few weeks at a time. This has not changed the fact that I have been NED below the brain since 2015. Don't sweat it even if you miss a dose. As others have stated, there should be no issue. I am sorry your ear is so miserable, hope it clears up soon.
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Hi Mara,
Thank you for your continued support over this. Also wanted to say how amazing your response is.
I took one Augmentin last night and have already woken up feeling sick.
I will go and see what they say.
Not easy any of this. The hearing loss is awful but I have been told temporary. If antibiotics don’t work it will be surgery.
Liz
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