HERCEPTIN and/or PERJETA Threads
Comments
-
I will be starting Taxol, Herceptin and Perjeta on Friday. I'm just skimming through to see what to expect from Taxol and Perjeta as they are new for me. Herceptin wasn't difficult the first time around so I don't expect it to be this time. It's always awkward joining the discussion in progress. I know most of my questions will have been covered in previous pages ---of to search through them now. I look forward to hearing how well you are all doing.
0 -
MaineRottweilers - Please don't feel awkward. Ask anything. We are all here to support each other.
Ann - Great message. It reminded me that I need to be more mindful and appreciate every day.
BabyRuth - It is a long time to be on a protocol but well worth it if you have positive results. For me, the side effects are manageable and I have a pretty good QOL, all things considered.
Karen
0 -
Welcome, Maine, and please join right in. Glad to "see" you. BabyRuth: yup, it can be a bit overwhelming to think of being on a protocol for extended periods of time. This combo has been so very good for me that I actually lose track of how long - over a year at least. But my mets have been made "inactive" and so well worth it. Please let us know how you make out. Howdy to Ann, Karen and everyone. SUE
0 -
I am on the same treatment of herceptin, perjeta, and zometa. At first the side effects did not seem that bad but they are getting worse. Nausea, vomitting and diarrhea and bone aches from the zometa. My scans are clear so I put up with the side effects. I work full time and run kids and I am exhausted all the time.
0 -
Maine and babyruth--I started taxol/h/p October 17, 2012! Taxol for 18 weekly infusions. H/p every 3 weeks. Finished taxol feb 2013. Breast tumor completely resolved (it was huge!), and my three liver tumors and one spinal met had reduced by 50%. I have been on h/p since that first treatment. Only one tumor in liver still detectable, but inactive. This combo has worked great for me...but the fatigue is becoming debilitating most days. Going to ask onc Friday for treatment break or Ritalin. Something has got to give...(I need to keep up with the kiddos).
Sorry to everyone who has read that now several times. Just want the new ones to know there are some good successes with this combo.
Beatmom--sorry you are still having a rough times with the gut
I guess I've been at this for 3 years I thought most people probably bounce back ok. I got cdiff twice and hospitalized with something similar...but I was hoping I was an exception to the rule. I wish there was something the dr's could do! No fun at all! Will be praying for you0 -
Dear Hydranne - feeling it, honey re: your upcoming "week -o-scans". Hope everything turns out to be fine - sending good karma your way. Do let us know. SUE
0 -
Hydranne, hoping your scans are good. Keep us posted.
0 -
Feeling positive having read through a number of your posts. Have mets in both lungs (20 tumours), spot on the iliac and two spots on the L3 and L4. Started the Cleopatra combo Perjeta, Herceptin and Taxotere on the 14th of April. Also receiving Zometa. Tumours in the lungs after 3 cycles of treatment reduced from 9mm to 6mm, I was hoping that when scanned on the 29th of September (after a full 8 cycles) that the tumours may have reduced further. However, they didn't but my Oncologist was very pleased with the results as the tumours are stable and my treatment is working. Had my final 9th taxotere on the 29th of September and yesterday just received Perjeta and Herceptin. I have handled all the treatment reasonably well despite my main side effect being diarrhea. Having said that mussel cramp, heartburn and hiccups as soon as I eat seem to be the most annoying side effects. Having ovaries out on the 3rd of November and will be put on a new hormonal daily tablet (can't remember the name) then will be scanned in December to see how the Herceptin, Perjeta and new hormonal tablet are fairing out. Sleeves rolled up and ready for anything!! xx
0 -
Thank you all for the kind words of encouragement. I am extremely pleased to hear of such great responses to chemo treatments. I am ever hopeful but I won't lie, it's daunting when looking at the rugged week they have planned for me.
Tuesday: MUGA, chemo Teaching in Farmington and check in for surgery tomorrow in Augusta.
Wednesday: Kyphoplasty
Thursday: meet with oncologist in Farmington, PET scan and first radiation treatment in Augusta.
Friday: chemo ---all day in the chair.
All smooth sailing after that. I just need to fit in time to have my port placed.He never gives us more than we can bear, right? I am beginning to feel a bit like a science experiment. It'll be a wonder that I don't glow in the dark from all the radioactive tags and radiation exposure this week.
I wonder why some get taxotere and others get taxol? My first time around I had six taxotere with carboplatin and herceptin for a year. This time it's just taxol, herceptin and adding perjeta. I wonder what the difference is other than perjeta wasn't approved at the time of my initial treatment.
0 -
Judo: thanks for sharing your progress. I'm impressed with your 9 taxotere. I think my MO is hoping I can sustain 8. I've had 4 so far. My scans to measure progress are next week.
Maine Rotweiller: are you receiving treatment at the Alfond Center? I lived in Waterville for 4 years before moving outside Philadelphia 8 years ago. I worked for MaineGeneral and raised a lot of the money for the Alfond Center, back when it was still an overgrown golf course! Such a pretty spot!
I had two kyphoplasty at the end of July. Life changing! I was in such agony and hadn't yet learned my diagnosis. For months I was told it was muscular. I'm on taxotere, herceptin, perjeta now and also getting Xgeva for bone repair. Feel free to reach out if you have any questions.
Rachel
0 -
Many here have donated . Thank you !........Wandering around and cheerleading again
Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs
https://community.breastcancer.org/forum/110/topic/834331?page=1
Link to the mainboard donation page
0 -
I just met with my oncologist after my first-round treatment PET-CT scan. I was on the Cleopatra protocol - Taxotere, Perjeta, Herceptin - for six rounds. I had several small lesions on my liver when I started treatment. Now they are gone! Also gone is the cancer activity in my lymph nodes. All that remains is some low-level activity in my primary breast tumor - max SUV 3.3. I will be on Herceptin and Perjeta every three weeks, indefinitely. The doctor thinks the Herceptin-Perjeta treatment will take care of the breast. Another PET-CT in four months. Fingers crossed.
0 -
Great news scrunchthecat! Thanks for sharing with us. Time to celebrate!
0 -
Such good news scrunchthecat! A victory for one of us is a victory for all of us. Let's keep it going - SUE
0 -
Wow! Lots of new h/p sisters...truly wish we could've just met up for bunco, but we're here & doggone it, we're going to do our best to grow old(er...for this "mature sister) together!!! And yes...ask any question...it's so hard to go through old posts to find answers & some of us w/chemo brain wouldn't remember what we posted anyway! So...good karma to those being scanned, healing to those w/rashes & D (dreadful! I was always on the other side...also dreadful), hoping for new found energy & most importantly...being able to live with that qol that is full & fulfilling! The pictures are fantastic, Fredntan...and that's coming from a Washington Apple gal!!! On to how life is w/just herceptin...as 2 yr old GD would say, "Piece a cake!" I pray just a little harder, hoping that this can be my regimen forever (really forever)!!! My ses are pretty non-existent. A bit of neuropathy left in my toes that truly is gone when I'm in so cal warmer weather (a five day trip w/fam & Disneyland was heavenly). Since dropping p, I have no cramps, my eyes & nose are almost normal (a little dry...drops in eyes if I think of it), my energy is remarkably better..nearly normal, I'm still down 6 pounds post p (I lost 36 on 22 mos of navelbine/h/p, gained 20 on h/p/f), I seem to have less fullness in my ankles/abdomen (which weren't a big deal but I seemed to be obsessed w/checking), my blood/TMs remain very good....I am also feeling incredibly blessed. Not a day goes by that I don't think about, worry about, pray for, hope for all out bc.org sisters & kjones, when you say you couldn't do what your friend did on his chemo regimen (so very happy he is well!), I know you probably already did...and continue to do!!!! I met a gal at my center who had AML...and a stem cell transplant (from a NY city firefighter!!) 11 years ago. She got the ok Wed to not be checked for a year! I told her mbc doesn't give you that ok...she said she had no idea it was a serious type C. But we laughed & exchanged "war stories" and can't wait to get together "outside" cancerland. I think when one developes primary cancer...be it even more than 1 (cousin's wife also has had 3 different primaries & they just keep fighting them off), it may not hold the aggressive nature a metastasis has. I'm just so thankful for our biologics...I'm going back to read the studies posted. Just hoping for that magic potion...for all!!!!
0 -
Hi Everyone
Just wondered how many of you had more than 6 Taxotere? My plan is for 6 Taxotere with H & P than go to just Perjeta & Herceptin. My Mets are in many mediastinal Nodes, internal mammary & Supraclavicular Lymph nodes, inoperable. Still trying to Be positive for family but totally freaked out, just diagnosed in July Stage 4.
0 -
Dear 2ndtime- I'm "feeling you" honey, we have all been where you are right now. This is the hardest part, and trust me, it will get better. You are on a wonderful regimen, just read back in this thread and you will see all the miraculous results contained in it. Meanwhile try to take a breath, and get ready to work your way thru the taxotere (Ihad to do navelbine instead). Taxol/taxotere stinks, no two ways about it, a necessary evil. But then it's over and you get to slide into home plate. I'll be thinking of you. SUE
0 -
I have been reading all of your posts since my diagnosis in June 2015. I haven't posted as I think I have been in denial. I am a nurse navigator for breast cancer patients and have focused my career in this direction for 19 years. I have a terrible family history and thought I would have prophylactic mastectomy's but wanted to wait until I had my MRI. Well, too late I had a 1.5cm right breast mass which I still can't feel and the MRI saw something in my liver. Shocked to be stage four right away! Everyone I work with at the Breast Health Clinic are just as shocked. I am off work of course and will be starting my 5th round of THP. I plan to have bilateral mastectomies with immediate reconstruction in Jan 2016 and continue with HP forever I guess.
Will be seeing my Dr tomorrow for my CT and MRI results after 4 rounds of treatment....I am hoping for good news.
For those with rashes, I suffered so bad between day 4-12, especially my nose! I would blow out scabs and have sores on my face and upper body. My family Dr had me do a swab in my nose for a staph aureus infection! It was positive and the ointment I have used has made everything disappear! ThIs round my nose was great!
Shrunchcat your story is much like mine, will you ever have breast surgery? Will your MO just continue to watch everything disappear?
Hugs to all of you!
Barb
0 -
Thanks, everyone, for the good wishes. The Cleopatra protocol seems to work pretty well for a lot of people. Keep posting your results so that we can compare. I think the next step is the HER2 vaccine for advanced cancer patients. My understanding is that there is a Phase I trial at the University of Washington? I'm trying to get more information.
bstein - sorry that you have joined our club, but you will find this community to be very informative and supportive. I have no nose hairs after 6 rounds of Taxotere! My oncologist has raised the possibility of surgery - but he wants to wait until after the next PET-CT to discuss. As he reminded me, my disease is "systemic" (he's kind of a no-social-skills dork), but he brought it up. I sometimes see some tissue floating around my boob, especially right after treatment.
0 -
Scrunchthecat: congratulations! Your results give me not only hope but resolve to tolerate THP with much more positivity.
0 -
I just met with my Family Dr to go over my CT scan and breast MRI - I see my MO on Monday before my next round of chemo and I just needed to know what the results were ASAP. The breast lesion is completely gone! The lesions in my liver have decreased from 1.7 to 1.1 and 1.2 to .7. Is that enough? I have 4 more rounds planned... Will they be gone??? Do any of you remember how you responded? I hoped they would be gone now too. Why did my breast tumor disappear and not my liver lesions- maybe those lesions are not HER2+ I am just not sure if this is great news or not?? Worried and a little scared.
0 -
bstein - My oncologist did not order a PET-CT until after my 6 THP sessions. At that point, the liver mets were gone and the lymph nodes were - gone? resolved? - not sure what word to use here. I have a little bit left in my breast. I would wait until the end of your treatment before I started worrying! It sounds like you are doing well.
0 -
bstein--my breast tumor was gone before my liver tumor and it was much bigger! My liver tumors continued to shrink even after taxol...just h/p has shrunk them to minuscule. I wish the same for you!! Best of luck
0 -
Thank you Kjones and scrunchthecat I will be more patient! It really is good news I think, breast tumor gone and about a 36% reduction in size of the liver mets...nice to know that even if it's not all gone by 8 rounds it can continue to shrink on PH
. I just want to be NED so bad! I choose to be cancer free!0 -
Hello! Over the last couple of days I've experienced a shedding of all my hair with the exception of the hair on my head (thankfully). I completed Taxotere in June, 2014. Has anyone else experienced hair loss well after the completion of chemo? Karen
0 -
Oh Karen! This crazy cancer world that we live in! I am so glad that the hair on your head was unaffected. The good news: no more leg shaving? Hope it's just a weird little quirk. Keep on dancing, Dearhart. SUE
0 -
Bstein -
Those results are really great. After four rounds of THP my liver tumor went from 2.5 to 1.2 cm. which actually is a 75% decrease in size if you consider volume. After two more rounds it was completely gone on scans and a biopsy showed no cancer. I had the spot ablated just in case. So with four more rounds left I think you are doing good! My liver tumor also was slower to resolve than my breast tumor.
0 -
Yikes Mikarae! Do you have eyebrows and eyelashes still?? What an odd side effect. I think the docs don't know the full spectrum of SEs from long-term H&P.
0 -
Eyelashes and eyebrows are gone!
0 -
bstein...I was on navelbine/h/p for 12 months before they said "stable" on 3rd dx, liver mets (breasts gone w/2nd dx). They said I would never show NED on scans, due to capsular retraction (so many large tumors that shrinkage caused a type of dimpling/scanning of the liver that shows up)...however, my Aug scan actually did say no evidence...woohoo! I think you're experiencing great response & your positivity is awesome!
Mikarae...so not fair!!! I was totally good w/private areas being hairless, but eyelashes & brows...NOT! I think P has more of an effect than oncs think on thinning hair, mine is filling in more now, but to have it fall out after being on it for this long...ugh. I can only hope it comes back quickly!!! I'm sweating (and smelling like it) now, since P is gone.
0
