HERCEPTIN and/or PERJETA Threads
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BabyRuth - Wishing you all the best with the procedure. Happy to read to that you've completed Taxotere and hoping your side effects are subsiding.
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I read an article about a woman who had a 75% reduction in her liver mets post Taxotere and after liver excision it was really just scar tissue. Baby Ruth, it might only be scar tissue, it's hard to determine active disease verses scar tissue with smaller mets! You will do great
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Minnie:
Just wanted to check in to see how you are doing with hair loss and telling your kids. Mine are similar ages and I had so much anxiety about it when I was diagnosed in August and lost my hair from taxotere in September. In reality, it was much easier than anticipated. Thinking of you!
Rachel
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Hello ladies! In the 3-1/2 years I've been stage iv, I've just had a biopsy that shows at least one of my tumors is now Her2+, so I'll be joining you on this treatment it seems. I'm to have taxotere, Herceptin, and Perjeta infused every 3 weeks. Can anyone who has had this regimen tell me how I might feel after the infusion? Is it safe to say that I'll need a ride home after, or do most of you manage to drive the same day? Just wondering how many services I might need to line up for infusion day next week.
Thanks!
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Good luck BabyRuth and congrats on finishing the Taxotere!
Welcome Kebab - My husband sat with me when I was still on the Taxotere because getting all three drugs takes 304 hours, but I continued to work (although my employer was very flexible and allowed me to work at home when I needed to). Thanks to steroids I felt great the first few days after my infusion. SE's usually started around day 3 or 4. SE's varied for me but included....rash, acid reflex, thrush, body aches and bone pain, loss of taste and of course hair loss. Overall though, it was much better then I expected. I did have one strange adversion to black pepper for the first few months, but I think that was from the effects of radiation as much as the Taxotere. You'll do great!
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Hi Kebab, welcome to the H/P gang. I am an old timer and remember you back before we broke down into so many threads. This regimen has been so great for so many of us, I just know it will be good for you. I didn't do taxiterrible like some of my friends here, but you will get excellent advice and lotsa love. Fondly, SUE
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Kebab:
My experience sounds daunting, but I actually feel like I'm managing quite well!
I have had five rounds of THP so far. On the day of treatment, I don't drive home myself because the Benadryl makes me pretty groggy. The steroids give me insomnia and some self-aggrandizement, so I actually accomplish quite a bit in those first few days. When they wear off, I typically crash for a day or two and also my skin hurts all over. But that subsides pretty quickly. I do have some fatigue and shortness of breath throughout, but it's pretty manageable. I have terrible reflux that turns into vomiting, so take daily prescription Prilosec. My biggest side effect is unrelenting diarrhea. I take daily Imodium, but it's still pretty constant. It was so bad the first round that I had to go in twice for IV fluids and lost 15 pounds. My MO reduced the taxotere 20%, which has helped some. I have stopped working. My role was incredibly public and demanding. Most days I feel like I'm operating at about 60% of my previous capacity. I'm discouraged by what I can't accomplish and commitments I miss, but I'm having a good treatment response, so it all is worth it.
Feel free to message me with any specific questions.
Rachel
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Thanks so much for sharing your experiences with me! I'm going to keep them all tucked in my back pocket for future reference. My onc called on Saturday morning and said she was having second thoughts. She wants me to try something other than a taxane (since I've been on Taxol the past 15 months), so instead of T/H/P, I'm starting Gemzar and Herceptin this week, and saving the Perjeta for later.
Thanks for making me so welcome! I think I'll stick around, just to see what I can find out about Herceptin at least.
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Kebab, just to throw more data into the pot: both RonnieKay and I did really well with a combo of herceptin and perjeta with navelbine in place of taxotere or taxol. Both of us were able to drop the navelbine eventually, while continuing to do well (for future reference). I know you will do well too Kebab - keep us posted. Fondly, SUE
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Just a question....
Are any of you on maintenance for pain....or taking regular regardless?
Kebab.... I was on Gemzar/Carboplatin for liver Mets and it worked great for my Mets and s/es were mild..
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I know that there are some potential eye issues associated with h & p. I get the weird vibrating eyelid from time to time. But recently I have had a couple of instances where my eyes started tearing and my face got red and puffy from strong smells. Today it happened at a restaurant during thanksgiving dinner, where I was surrounded by ladies wearing strong perfume (white diamonds) in a pretty claustrophobic and airless dining room. I moved a few seats away from them and it helped. A few days ago I was sitting in my third floor apartment when the same thing happened. It took me a while to realize that it was smoke from a barbecue grill in the courtyard a few doors down. I shut my porch and Windows and turned on some fans and it helped. I was always a little sensitive to strong smells before treatment, but now it seems amplified. Anyone else experience this
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My eyes are so watery in the morning then extremely dry at night. Nose is the same way. The h&p must mess in sinus area!!! Ugh the red flushing face hasn't happened........sure could.
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Yep Kebab...will be hoping Gemzar w/h on the side is just the ticket! My onc didn't want to use a taxane w/mets dx because I'd had it w/first dx....and like SUE said, navelbine w/h & p was good to us! Especially happy you had the biopsy that showed biologics will be useful!! They're a whole different, easier ball of wax (and what does that mean...LOL!). Anyhoo...hopeful this regimen is good/easier for you & works great!
Scrunch...SUE and I both had vision changes on our navelbine/herceptin/perjeta regimen. With dropping navelbine, that seemed to even out a bit but I still had very sensitive eyes. I saw the opthomologist a couple times for inflammation (getting steroids..ugh) & never could really pinpoint anything major that caused it. I couldn't wear eye makeup...at all...until I was able to drop perjeta in July. I started taking Claritin daily a couple years ago...mostly for neulasta but with eye problems, my onc said to take it daily-for as long as I needed, and it seemed to help a bit. I think perjeta is mostly the tough one,since I didn't have the problem the first time on herceptin. Like baby duck said, something about this regimen must make our sinuses more delicate. I know I had very frequent nose bleeds...all the while dripping, but with just herceptin, my eyes & nose are better (I still drip!). I know I keep singing the yahoo being off perjeta...I'm still wishin, hopin, praying herceptin is doing the job. If not...id be singing for perjeta big time!!!
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Dammit is right Hydranne. I'm so sorry to hear that. Do you know what criteria they will use to decide whether or not do do a mastectomy? Will be keeping you in my thoughts. Please keep us updated. Sending hugs from MI to NM. XXXX
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Hydranne...dangnabit :-(. Good news is that we know tax/car will be mighty machines on nasty cells!!! Praying for you...and we will cheer you up if you need it!!!
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My DH had hip revision surgery Tues. The surgeon said for the past 9 years, there was only scar tissue holding his hip in place (and not very well...he had loads of pain!). Dr (not the original!) was amazed it'd never dislocated..egads!!! So, I'm picking him up from the hospital now (spent all day Tues & Wed with him but crashed at home at night). Hope I remember to be as loving, patient & helpful as he's been to me the past 6.5 years :-)
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RonnieKay - That's so sweet. I can't see you being anything but loving, patient and helpful. Quick healing to your hubby. Hope his surgery alleviates the pain.
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Thanks friends! I have cooked (is malto meal cooking?) 5 meals so far...I have a tally going. That's more than I've been in the kitchen in a long time! DH loves to cook. So, he's doing great! Hydranne...does this mean they'll scan earlier? There is just no mercy with this disease...it makes me so mad!
Since Thanksgiving, I've had a sour stomach & odd bms (tmi). I finally got concerned & emailed my dr yesterday. The nurse wrote back...go to a clinic now. They had no appts open there (4:30 pm) but there are affiliates within 10+ miles. I went to the neighborhood urgent care & discussing it w/dr, he gave me the look, about stool being pencil thin, etc. I hate that look. Blood test came back normal & stool test will be back in 2-5 days. I was scared until DD said she has the same thing. So...was it turkey, salad, pie, or just too much of it??? Why does everything have to make me worry so?
Wishing all a restful Sunday!
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Ronnie sweetie: wow, lots and lots on your plate, oncluding the cooking! Re: DH, so glad that you were there to help him along and cheer him on. I guess our bodies just require a tune up from time to time - HA ! Sending healing energy to him and to his wonderful nurse.
And Re: the excellent you , no worries yet my friend. As the say, sometimes a cigar is just a cigar. After the bounty of Thanksgiving feasting, why wouldn't your tummy and bowels be a little crazy? Glad that the health pro urged you to check it out , but remember you (and all of us) have had tons of meds on board and have for years - our bodies will surely register this. I feel sure that all will be well. Will wait to hear the good news from you, meanwhile give those Grandies a hug. Sending love, SUE
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RK - Sorry to hear you are feeling unwell, but very glad you are being checked out. I know what you mean about "the look". I feel I can hear "the voice" over the phone when my Onc calls. Hope your DH is recovering well from his surgery. Does he need to do time in rehab for his hip?
Dr called the other day with results from my pelvic ultrasound to check on those "possible" ovarian cysts. All looked like normal cysts except one. He said it is either a complex cyst, or breast cancer mets, or (wouldn't this be a kick in the pants) ovarian cancer. Dr. Google says there is an 80% chance of it being benign, although I'm sure that having MBC that skews those odds just a bit. The earliest GYN appointment I could get was the 30th. I intend to have that oophrectomy asap in 2016...I want it out, and all its little friends too. The worrisome cyst/neoplasm measures 9.8 cm. I haven't yet gotten out the tape measure to see exactly what 9.8 cm looks like, but it seems to me exceptionally large given that they they measured my uterus at only 7.5 cm. Anyone else ever have something similar? My first thought was to blame the Tamoxifen, but the Dr. poo-poo'd that idea.
We went to the most beautiful wedding yesterday. Two gentlemen from our in-person support group, one who had a stroke and the other has Stage IV cancer, have finally married after 16 years together. Seeing their joy and the joy of their families and church friends really did the heart good when there is so much negativity in the world right now. It was a nice reminder that the best thing we can do in this world is love one another.
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Shutter...no, no, no go with the benign thoughts! With all the treatment you have had the universe would be just twisted and cruel. Tamoxifen has been known to cause endometrial cancer with long term use but not ovarian that I have ever heard. I hope you can put this worry in a little box and open it only if you need to.
I will finish my last THP Jan 4th then have scans booked. The plan is for bilateral mastectomies with immediate reconstruction (this was planned last July when I was diagnosed but put on hold when the breast MRI noticed something in my liver, hence stage four and chemo right away). I understand that some of us stage four do not have beast surgery at all...I understand the point that it won't change your outcome as you are stage 4...however many of us have. Hydranne had progression in her breast while on treatment, now talk of a mastectomy....
If my scans show NED (please) or stability? Off to surgery. What to do with the liver will be reviewed at that time, surgery or radiation...
Who knows what the future holds...I just thought that the less breast cells kicking around would make it less likely that my BC could mutate to triple negative or something...
What's everyone's thoughts on mastectomy while stage 4?
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Shutter, I hear you loud and clear about wanting those ovaries out! Even at 66 years, when my ovaries are probably two little shriveled up things the size of raisins, I worry about them all the time. My excellent GYN won't take mine out ("too much trauma to your system, it's busy helping to heal you") but she tells the powers that be that I have "pelvic pain" and ultrasounds them every six months - bless her.
My extensive reading and worrying has assured me that the vast majority of ovarian cysts , even the peculiar ones, are benign, and I'm betting that this is the case for you. Your body has been waging war on cancer nonstop, and I am guessing that any potential ovarian nasties wouldn't have a chance. Must you wait until the 30th to get some peace if mind? Is there anyone that you can see sooner?
Also, my GYN tells me that they can do blood work to check for an ovarian marker - I think it's easily done. Maybe your oncogist could order it for you(?). It would be great to get good news before the holidays.
Thinking of you, honey, and sending good karma. Fondly, SUE
PS: so lovely that you were able to witness the wedding that you described. Any time two people are able to find love, it is a joy and a blessing.
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Shutterbug - Is it possible to get an appointment with our GYN sooner than the 30th? The 30th seems so far away and it will be weighing on your mind over the holidays. Sounds like your doctor wants you to know all the possible outcomes. The good and the bad. I'm going with the good (benign). I've read in multiple reports that Tamoxifen is associated with ovarian cysts.
So glad you enjoyed your friends' wedding. I totally agree with you - the best thing we can do is love one another.
bstein - I had a bilateral mastectomy. My doctors put the horse before the cart and booked my surgery prior to my bone scan. However, my oncologist says he would have advised me to do so regardless. He said it is best to remove the "mothership". I did not do reconstruction and at times I wish I had.
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Fingers crossed for you, Shutterbug. Hang in there!
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bstein, I had both breasts off (one at a time, each with its own recurrence) prior to going metastatic. However I remember thinking I wanted those buggers OUT OUT OUT. What mikarae says feels right to me / to get rid of the mothership. Go with what you feel is right.
Thinking of you, Hydranne. SUE
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Thank you for all your feedback! I will elect to have both breast removed in the new year if all goes as planned.
I spent the day a little teary and scared. I had a cardiac MRI yesterday as follow up after 6 rounds of THP. The nurse called today and said my "EF was decreased by 6%, they start to worry at 10% and she is going to let my MO know". I am to see my MO next week before round 7... I am terrified she is going to hold it or stop it. If I'm suppose to be on HP for life but can't handle 6 rounds I will never make it! Maybe it's the taxotere not the Herceptin. I also use to lift weight 3xweek and go to boot camp, etc. Honestly, I just quit when I was diagnosed and haven't exercised at all...I wonder if this was a cause for the change too.
I am going to start exercising but still wonder what's the point...feeling sad today.
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stein - My guess and hope is that it is the Taxotere. I had some EF fluctuations when I was on it but this levelled out once I was on the HP only.
Thinking of you...
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Hello to all of our H&P friends - hope all is well.
Had my routine visit with my MO today - she used the word "remission" and touched on the word "cure". Suffice it to say that she considers my cancer to be in remission and I won't need another PET scan until April (last one in October). Like many oncologists, she feels that there are many "weapons in the arsenal" for HER2+ BC (TDM-1 is one), which is all very good to hear. The research into immunotherapy for solid tumors - including breast cancer is going to change the future of cancer treatment for many types of cancer.
Some of our H&P sisters remain NED for many years and I brought up the common question we ask: Is it okay to stop? And her answer was: We don't know.
I'm happy to continue on H&P for as long as it works . I don't have any particular SEs other than some fatigue for a couple of days after the infusion.
The last time I checked in I was dealing with cataracts (complication from steroids while I was on Taxotere). I had cataract surgery 3 weeks ago and my vision is near perfect now. I was a teenager when I was first diagnosed with near-sightedness. Now I no longer need glasses or contact lenses.
My heart is just so full of gratitude for the many blessings that I have.
Good luck to everyone on your journey.
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bstein - my understanding is that - should you reach a reduction of 10%, they will refer you to a cardiologist - and one who specializes in complications related to cancer therapy. They may hold THP until your cardiac function improves. But the best thing you can do for yourself is to resume those activities that improve cardiac health. An exercise program like walking or running will make things better. If you're overweight, lose weight.
I dropped 50# in the past year and started on high blood pressure meds - my heart scans have shown improvement. And they have been normal all along.
So do what you can to help your heart get better.
Here's some information that may help
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been awhile since I've checked-in and am still catching-up... but I'm so happy to be reading the many good reports and nice to read about tx changes that have worked well, too.
I'm still on h/p (since 2/2014) & am 3 months post-gamma knife to 2 brain mets (h/p aren't thought to reach the brain, so brain mets are not a sign of failed tx or tx resistance). first f/u MRI showed a great response - 1 no longer visible & 1 reduced by 50% - radiation should continue working over time. of course, nothing is ever straight-forward... mixed-in with the fabulously great brain news was yet another enigmatic PET - active retroperitoneal lymph nodes. no one knew quite what to make of it - so we're going with the ever-so-much-fun wait & see approach. next scans were bumped up to end of January.
dh & I are taking it as another wonky scan result that could be attributed to a number of factors. sounds crazy, I know, but this'll be the third PET(or MRI) that's turned up something 'odd.' past indeterminate findings went quietly away - I'm hoping this one will, too. I'm learning to try to prepare for neutral, positive, negative and indeterminate results... all at the same time. tricky.
I'm nearly 2 years into cancerland and still agree with what I heard back at the start... it does somehow get easier. even during the more difficult days. while I'm still disgusted with this disease, how it hurts my loved ones, and the suffering it causes, it just seems a little easier to manage/deal-with, whatever you call it. I'm not sure if that's due to becoming somewhat desensitized or improved coping skills, or a combo, but in any event, it is easier to enjoy the good - days, moments, jokes, whatever's available than it was the first six months. I assume like all else, this too will continue to change, but for the new folks, it's true what they say --- it can get less oppressive.
I'd say word of the year has to be resiliency - I'm thrilled with how much more resilient my loved ones have become and pretty pleased with myself, too. a month after brain mets dx we finally went on that vacation we'd been putting-off 'till things 'got more settled' (things were anything but more settled!) and it was wonderful - no time like the present.
thank you to everyone for the super supportive comments after gamma knife. I'm sorry I didn't say thanks then - I was reading and the kind words felt fabulous - thanks doesn't even cover it. it was a rough time and you helped make it less so. I'm so grateful for the positive attitudes and support found here. best wishes for a happy holiday season, ever-increasing resiliency, and many many many good reports!
ps - someone had asked (sorry for the delay) if tumor markers had hinted at trouble before brain mets dx - short answer: no; longer answer: they'd never been in-line with my tumor-load and so they don't get checked. I asked if it was worth monitoring again and was told no.
pps - unlike most, I didn't find gamma knife to be SE-free. while definitely not awful, I'm still struggling with increased fatigue and some cognitive changes (more annoying than devastating, but still disturbing) - no one knows if things will improve, but upping the energy-boosters has helped a ton. I still need to rest/take it easy, but decent doses of Ritalin really help me keep up with the things I want to be doing. was really fortunate to find a doc who kinda specializes in this area and am happy to share dose strategies - pm me for details.
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