HERCEPTIN and/or PERJETA Threads
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carla thank you!! 3 years on this is my goal! Of coarse I'll take longer but 3 years without chemo and progression would be amazing! Wishing you many more years on it
Momallthetime I really hope that you find a treatment that sticks and works for dani. I am no help I don't know what neurogen is. My Onc is just like I have no idea how long it could be a month or years we just don't know why people respond how they do.0 -
Hi Momallthetime, no I have not been on Neupogen. My blood counts have been fine. H&P has been pretty easy so far. I hope it works for Dani. Bosco, OK, really who knows? There's a woman who posted today that she has been on Herceptin for 18 years. Since 1998. She qualified for the Herceptin trial when her treatment failed and she had extensive bone mets after completing all the treatment for early detection so she was probably stage iv from the start. She was 38 at the time. Under that post, another woman posted she was so glad to hear that because she has been on it for 13 years and 18 years gives her hope. lol No one knows. Hope everyone is going well. I am feeling good and living life. It's been almost a year since my stage iv diagnosis de novo. So much has changed, so much has not. Shutterbug, what's up with the Tigers? XO Dana
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Bosco2602, why not expect it to put you into remission for life! 30+ years until they find the cure? Put out into the universe you expect to live a very long life! I fully expect that it will continue working for me, why not there are many super responders.
I do wonder how the long term users hearts have been over their years of treatment...have they ever had a decreased LVEF? Have they every had to stop Herceptin until their heart improved??
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LOL - Can't help you with the Tigers Txmom. That's baseball, right?
Glad you are doing well. I'm probably 6 months or so ahead of you, also de novo. Thankful for every day! (I saw that 18 year post too...so inspiring!)Momallthetime- Never needed the Neupogen. My counts were never low enough. Hope the new treatment works well for Dani.
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I'm hoping to get many years out of H& P! I wanted to share this image with you all because it is a strong visual of how much these drugs work! This shows my tumor marker numbers for the past two years. I was diagnosed with mets to bone, liver and lungs in late December of 2015, more than 8 years after my original diagnosis. I was seeing my onc regularly, and you can see my markers were slightly elevated a year ago, but not so much as to make me too concerned. Then my world caved in and I started treatment in January. My CA 27-29 markers at that point were 858! I just got the new numbers today and they are nowdown to 49! Almost normal range! I just love looking at that steep drop!
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momallthetime - I don't think they used my Herceptin for someone else. They keep plenty of drugs on hand and the pharmacist mixes the dose as its needed. There isn't a prior authorization process with my carrier and it's a large infusion center. They operate more than one center in town, so they just get what they need from each other because they are sister facilities. And they use a lot of Herceptin. So it was a snafu in the way they stock the drug. Which is a pharmacy issue.
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Just looking at your information, it sounds like you are triple positive and the treatment plans can get quite complex. I don't know how far you are into understanding your diagnosis and how much information you want right now. It takes a while to get your brain wrapped around things. I don't think your onc was trying to leave you hopeless, but there's still a lot of research going on with the best treatment for triple positive breast cancers, and still a lot that isn't known about how well each person will respond to H&P. Breast cancer isn't just one disease, it's many diseases and each of us will respond differently.
Mind - body connection is important, though, and keeping everything positive is therapeutic. So listen to our lady friends and just remember that your onc is trying to help you understand this very complicated disease.
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Hi All - the moderators directed me to this thread since I am receive treatment wih taxol+ herceptin + perjeta. I've been following discussions around the site and made a couple of posts and people on these boards are great. I've been diagnosed with Stage IV with mets to liver/bone/spine. I am her2 + , er - , pr - so I just stared the taxol , herceptin , and perjeta treatments.
I'd be curious to hear from anyone who is in the same boat with stage ivand her2 + treatments.
I'm 36 with 2 young children and wondering how effective these treatments are. I've heard great stuff about them and just beginning this long journey.
Thanks and good luck to all of you as well!
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Welcome JCNC....not a journey that any of us want to be on, but the women on BCO are incredible fellow travelers. This is the first time I have posted to this thread - I am very active on some others, but just happened to see this one today and your post. I was diagnosed at 44 with mets to bone/spine/liver/ - ribs, everywhere. It was seriously a miracle that I was walking... I'd thought I had a sports related injury ( I was naïve, AND in denial I think) so I ended up hospitalized and getting emergent radiation every day for three weeks. After that - six cycles of chemo including taxol. I was supposed to have 8 cycles, but developed severe neuropathy in my feet and my oncologist felt it was better to stop. Anyway - I have continued on Herceptin and Perjeta every three weeks... with a few breaks here and there, and Xgeva every six weeks. I am also somewhat ER+ but haven't been taking anything for that, aside from Lupron shots in the very beginning. It's been almost 4 years and I have been considered NED for the last 3...... I feel very fortunate that the Herceptin appears to be working well so far. You'll discover women that have been on Herceptin for 8 years, 13 years... I've even heard 18 years.... so I guess in some ways we might be lucky that we are Her2+ as there are several drugs that are very effective. I have two children as well, and two stepchildren... 2 in college and 2 in high school....and my main focus is keeping myself here for all of them (and my husband, of course
) for as long as possible. I know you'll get lots of support and responses .... BCO is a wonderful source of knowledge, comfort, and friendship.
XO
Andrea
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JCNC: welcome to the boards. I was diagnosed last summer with extensive bone mets. I also have young children. I don't have any sage advice yet, but I'm here for you!
Is anyone being prescribed something for their heart to allow them to remain on herceptin? My oncology team isn't worried yet (I'm still in normal range), but my LVEF has declined 10 points since I started herceptin in August, so I'm worried.I have had an amazing treatment response, so want to stay on herceptin as long as possible. I see a cardiologist on 5/26. Thanks.
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Welcome JCNC!
You're ER-/PR-/HER2+. When the oncologists talk about this type of breast cancer, you can see how excited they get. They know that THP is very effective. The worst part of the treatment is the Taxol - when that's done, life gets pretty good as the side effects to H&P are minimal and your quality of life remains good. They know from the Cleopatra studies that long-term survival is quite good and that you can remain on it for many years. But THP has only been the standard of care for less than 2 years so no one (not even the oncologists) can tell you much more than what the CLEOPATRA study says. Genentech has a SystHER registry where they are collecting data on the long-term response of women on these drugs.
From the responses here, most of us are doing quite well.
BlueFrog - it's pretty standard for the cardiologist to start you on a beta-blocker when your LVEF drops and there's some studies out there that suggest that beta-blockers will enhance your heart's ability to tolerate H&P. If your LVEF drops enough, they will hold the Herceptin until your numbers rise and re-start the drugs with a beta-blocker. So, it's concerning, but the doctors are going to work very hard to keep you on H&P with other supportive measures.
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BlueFrog - I take CoQ10 every morning (100mg). It's supposed to be good for your heart. My LVEF has remained steady at 65% for the past 9 months. :-)
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Hi Bstein,
Thanks for your nice note. Hope all is getting back to some sense of normalcy for those Canadians affected by the terrible wildfires... ( Grew up near Buffalo, visited Ontario often, and also Quebec, a greatgrandparent buried in Ontario) ...Had hope this summer to take the train from Winnipeg to Edmonton...So sorry to hear about Ft. Mc. ( Son may be getting married in Wisconsin where we have not visited). Hoping to fly from Minn to Winnepeg...etc.
We have had 15 days of rain, in Maryland, so sinuses are going a bit crazy.
My onco nurse proactively used hypo allergenic dressing on post infusion port site..no issues.
Had some minor neck swelling on my port side ( my non cancer side) after working in my garden ( probably lymphedema which I have on the other side ( cancer side) . Also minor headache. This went away with some coldcalm.
Has anyone had sinus issues on extended use of Perjeta/Herceptin?
I had total runny nose while on Herceptin only in 2012. Also runny nose periodically this go round but less with Perjeta/Herceptin combo.
Lately I have had one crackly right ear ( been to an audiologist and everything fine in my ear) .Ear issue is like change in pressure puff like in an airplane and currently I have sinus congestion, a change from my normal runny nose. Might be the weather and pollen, or a virus but it is on the same side as my previous two cancer recurrances.
Tend to blame everything on the unchemos...Haha.
I do have seasonal allergies which wax and wane ( usually way better on chemo) . I am a year out from four cycles of Pacetacel/Herceptin/ Perjeta. Now on a reduced dose of Perjeta and reg dose Herceptin indefinately.
Have some leg cramp issues from low magnesium but otherwise healthy. Do yoga and acupuncture and walk my dog daily but less since the weather/pollen has been so challenging.
Just wondering
Newbie20111
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Hi newbie - I do notice a runny nose at times. I also have seasonal allergies and I've noticed a bit more sneezing and irritation in my throat and sinuses this week. It's May, so I assume that the pollen count is higher now.
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yup. Maybe we need to just get to a nice sunny tropical island and drink coconut milk and swim in the blue ocean! Haha
Newbie20111
Spouse just came back from Denver/Aspen etc. Loved it. So very besutiul out there.
Happy Spring
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AHH, the tropical island sounds so wonderful.
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Hi all - for those of you who had chemo, I was wondering how long it took before you were free from the side effects. My MO told me they would go away 3-4 weeks after the last treatment. I'm 7.5 weeks out and am still dealing with the bone pain, taste changes, neuropathy, and insomnia. I'm starting to get concerned that these things are permanent.
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Speaking of islands, my family and I booked a trip to Turks & Caicos well before we found out about about my condition. I've been through 2 treatments already (#1 taxol + h +p ; # 2 taxol) then scheduled for one more taxol the day before we leave for a week. My Oncologist says it's no issue whatsoever to go but a little nervous nonetheless. What do you think? Is there anything I should really be on the lookout for or worried about? I has some mild side effects after the first treatment with some flushing and itchiness in the throat but took some Benadryl and it helped. Nothing too bad after the second treatment. Also after treatment #3 do I need to start thinking about and worrying about hair loss?
Hope everyone here is well and feeling good. Thanks for listening.
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mtdd - I think it's an individual thing. The worst of the side effects went away pretty quickly, but it took months for my bowels to return to normal. Insomnia went away when I went on radiation therapy and I was using gabapentin for neuropathy. Now, neuropathy is something that takes months to heal. I've been off taxotere for a year and I still have it in my feet and my fingers. I'm sure that it is permanent by now, but it is definitely less severe and it's tolerable. I'm thinking it's time to try alternative medicine to manage it.
I did notice that most of the side effects disappeared at about the same time that my hair started to grow back - which was about 2 months after I stopped the taxotere.
JCNC - if you have the energy to go, do it. I found that I was pretty tired and weak while I was on Taxotere and I wouldn't have enjoyed a trip like that. The only thing I would be concerned about is the risk of infection while you are on Taxotere. Definitely drink bottled water. You don't want to get a case of traveler's diarrhea.
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I think your trip is planned perfect. You can get back and do THP again. I went on a trip that we had planned prior to my diagnosis. I delayed round 5 for a week and went. Felt the best I could as is was week 4 post treatment. You are on taxol so that is a bit different as it is weekly. Make sure you bring stuff to deal with hair loss as it is slower with taxol. With Taxotere mine was gone by day 14 after first treatment. Life is short and the break will give your spirit lift! Have fun and be careful.
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I have a runny nose all the time. Never am without a tissue.:-)
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Hello friends, I had my infusion on Wed and am having stomach aches and loose stool. Does this happen to anyone else? I am taking Imodium. Just want to make sure I am normal. Thanks
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Hi Newbie - You are experiencing what we refer to as the Herceptin drip. I have it too. Strangely I also have allergies and problems with my right ear getting plugged up and crackly. Usually I use Afrin spray for a day or two to clear it out. I suffer from leg and foot cramps too, especially at night or when pointing my toes. I've had all my levels checked and they came back ok, so I haven't figured out a solution for that yet.
Txmom - I have not had much of an issue with loose stool in connection to the H&P, but I know others have mentioned it. I did have a few episodes of the big D when I was on the Taxotere, but Imodium seemed to work well enough. Hope it works for you too.
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Newbie, yes, it's the Herceptin. It gets better but then all of a sudden it'll drip. It can be embarrassing. I always have tissues too. The Imodium seems to be working. I think I have a sensitive stomach.
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I definitely have the drip. It's the weirdest thing - it comes out of nowhere. Not like a runny nose.... just like all of a sudden my nose is dripping. I actually skipped a round of Herceptin - I was getting ready to run a 1/2 marathon and was trying to avoid the muscle and joint aches that I usually get. I usually get very tired the day or two days after my treatment. I had one a week ago (my last one had been the end of March) and I noticed that this time I didnt' get tired at all. No noticeable SE's, which I thought was interesting. I wonder if my body just recovered a little more since it had six weeks off? ( I still have the drip - that didnt' go away)...
XO
Andi
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Txmom -- it is normal. If the Imodium does not work ask for lomotil.
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TXmom lomotil for my daughter too. See what works for you best. BT tomorrow, and then scanning in 2 weeks. Fingers Crossed.
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Just thought I would post an update on the use of beta-blockers to prevent heart damage with Herceptin.
It's a fairly common question on this thread about what happens if your numbers drop on your MUGA scan. There were two recently published studies in 2015 that suggest that a beta blocker will help protect your heart from these changes.
The discussions we've had on this board got my brain to thinking. I have been on a calcium channel blocker since last September to manage hypertension - which seemed to become aggravated and out of control after I started on Herceptin. I was routinely having BPs of 180/90 on my visits during radiation therapy. After starting on the calcium channel blocker, my blood pressures have fallen into more acceptable numbers like 135/80.
Our healthcare system is complex and when you're a cancer patient, who should be managing things like your blood pressure? Your PCP, your oncologist or your cardiologist?
I scheduled an appointment with my PCP and she started me on Amlodopine. However, after reading the questions from our dear friends at BCO regarding their MUGA scans, it made me think that perhaps the PCP wasn't the best person to manage and select the antihypertensive drug I should be taking.
On my last visit with my oncologist, I mentioned this to her. And I asked her "What would a cardiologist recommend for controlling my blood pressure knowing that I'm on Herceptin?" She promised to do some research.
And, after doing her own research and talking to the pharmacist, they all agreed that either a beta-blocker or an ARB (studies say that beta-blocker is more protective) would provide protection for my heart against CHF while managing my blood pressure.
We have to keep the PCP in the loop, so the MO will be sending her recommendations along to the PCP and I should be starting on a beta-blocker next week.
The lesson that I take from this is that we are the best advocates for our treatment. And the better educated we are, the more successful we will be at managing this disease.
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Last year after only 6 doses of H&P I got a call saying my injection fraction decreased by 10% and they were referring me to a cardiac oncologist. I cried and panicked thinking, I need this medication for the rest of my life and I'm having problems already! I did research like crazy that week and when I met with my MO I asked to be put on a beta blocker. Not only do they give some protection, some research suggests beta blockers prevent or even reverse resistance to Herceptin. I posted that article in the fall but I could dig it out if anyone wants to read it.
My MO agreed and I'm only on 12.5mg of Metoprolol. The cardiologist said I didn't need it, my LVEF just went from 67% to 61% and if there was ever a problem they could just hold the Herceptin for awhile. I wanted to ask him if he was crazy or just plain stupid but I just smiled and told him I disagreed and would take it. He was OK with that and said it was up to me. My last cardiac MRI was the same so I am happy. I'll have another MRI in three months and then every 6 months if it's still ok....
I love my MO and I have worked with her on a professional level for years in Breast Health and helped her get the High Risk Breast and Ovarian cancer clinic started through my Masters research. She knows that I'll be doing research and questioning everything.
I'm going back to work June 7...I am looking forward to it. I think I will be a much better nurse navigator for breast cancer patients but will have to be careful not to say, "well I found..." when discussing their diagnosis and treatment plan.
We are all such beautiful, strong women
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Congrats, BStein! Thanks for sharing your story. Excuse my ignorance - but what is the difference between a statin and a beta blocker? I tried to ask Dr. Google, and did not get an answer.
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