HERCEPTIN and/or PERJETA Threads
Comments
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Kjones - Wow 56 infusions! Do you have blood work and an oncologist appointment prior to each infusion? In the beginning I was told I would only see the oncologist once every three months but it has worked out to being once every three weeks. I am so grateful for these therapies but it is a big commitment especially when you are not feeling well, have children at home and/or work.
Shutterbug - I am like you. Ready for bed a couple hours after I get home from work. Some days I wonder why I continue to work when it consumes all my energy. The answer is - having to pay those pesky bills.
Wishing everyone well,
Karen
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Hi all, haven't been on this thread for awhile but I do read it frequently. 25 months of infusions and happy to report I'm almost NED (they can still see my lung mets on CT but they don't glow on PET). Just wanted to say "I hear ya" to everyone dealing with fatigue and other side effects with these meds. You don't want to complain because it could be worse, but the fatigue is real. It's frustrating to feel like crap on the inside but seem fine on the outside. It makes me feel like I must be a wimp. I swear on my headstone it's going to say "Her blood tests were fine and she looked great!" I'm headed out for treatment today; seeing the wonderful nurses are the one thing I look forward to, otherwise it would be very tempting to play hooky!
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Shutterbug...glad to hear your dr thinks dry eyes. After 3 changes to my glasses prescription in the second year of treatment (navel/her/perj), my eye dr said he thought it probably was from the drugs...which one, he didn't know. But now, 6 mos off navelbine, it's stabilized a bit. I have the same dry eye problem, especially with allergies, but my vision changed 3 levels before. When I can't see the tv channel, that's a problem :-). Maybe the difference is age...ugh. That's what the dr blamed first :-)
I am happy that it sounds like we're tolerating p/h....w/AIs thrown in for a little midnight madness....that's what it does to me. If you ever wake up in the middle of the night, know I'm there, wide awake, praying for all of us!
J...sorry about your Mim's brain mets...and the good/bad news that there were no symptoms. Thank God they found them now & my guess is she will be her strong self & do what she needs to do to catch NED again!
I have shared my news some places...but this is probably the most important thread since we're all sharing the same lifeline! I saw my onc on 4/22, and after he asked if I was fully aware of how good my TMs are (his nurse calls every Fri after Wed infusion), he said it's obvious to him that my bc is her2 sensitive. All this time, I've thought it was fast growing (6 month scan 6/12...clean, 12/12...full liver involvement). Second dx in 2 years (1 yr on her), third dx in 1.5 years (no her then). So...he said he believes it's slow growing & that 6 mos of h/p/letrozole (no chemo), with normal TMs...he said he believes I'm in remission! I jokingly said I thought that you couldn't use that word in the cancer world and he said...I Just Did! Then I teared up. He said if everything is the same 6 mos from now, he'll drop perjeta, since long term, herceptin has shown success & (someone just said this...can't go back to check who????)...there isn't long term data on perjeta, so why continue that. He did say he'd do checks more frequently (not sure what), but I'm thrilled. He said he's working on developing a study that will involve her2+, metastatic gals, who've been on h/, who've reached remission. I hope that applies to All Of Us!!!! On that Fri, the nurse called, CEA was .7, Ca2729 was less than 5...not measureable. I also know this monster can rear its ugly head when we least expect it...but I have a peace I haven't felt in a long time & I'm running with it (all the way to the couch for a nap!). My hope and prayers h/p keeps us here for a long, long time! Love you all!
Ps...I've never thought of keeping track of infusions...it makes my head spin thinking about it :-). Each one means a $4 parking ticket that we gladly deduct!
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Ronniekay: Absolutely thrilled for you! It's such a crazy balance game we play all the time with this and to hear those words from your onc must have put you on Cloud 9!!!! Congratulations to you on this outstanding news and may your treatment plan keep you right where you need to be! Ann
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Just had PET scan on 4/18/15. No evidence of disease and only two months on THP0 -
Sooooooo happy for you RonnieKay and pwilmarth!!!!!! That's very encouraging for all of us!!!
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Hi everyone,
Finished six rounds of thp in April, follow up Pet shows no active cancer! Bone mets diagnosed 10/14.
I always love to hear good news so I thought that I would share.
Kim
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wonderful news!!!!!enjoy this time take a breath do something you love!!
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Great news all around - HOTCHA! Gives me hope and confidence . Love to all SUE
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RonnieKay - Your post made me laugh and cry (happy tears!) all at the same time. I have to wonder if Perjeta will increase that 2-3% MBC cure rate. (Yes! I said the OTHER C word!). Also, from now on when I wake up in the middle of the night and throw the cats and blankets off the bed (hubby can stay), I'll be thinking of all of you gals doing the same thing!
Look at everyone getting to NED! Congratulations to you all! I still have this big ol' breast lump which I monitor somewhat obsessively. I swear it changes and moves daily. One day I'm sure I'll look for it and won't be able to find it, and then I'll throw myself a NED party and you will all be invited.
Keep it up ladies!
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When I read about other's journey with this disease, I feel really blessed. The THP protocol is so new, but it seems so effective. If I had been diagnosed sooner, I may not have been placed on this protocol. From what I understand from the Cleopatra studies, this is a real breakthrough in HER2+ BC.0 -
pwilmarth - I am just about to get my 4th THP treatment (my onc also added carboplatin - she says she's using a curative approach but I try not to get false hope) and will get a scan in two weeks to see how it's working. I can't feel the lump in my breast anymore so I'm hoping the spot on my liver has gone away as well. I agree that we're so lucky to have THP available to us.
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josalive,. I had my PET scan after my third round of THP. First scan showed a small spot on my rib and 2 small spots on my liver. All gone now.
So I'm hoping you get equally good news.
Genentech asked me to participate in a follow up study, so I will be giving them feedback on the effects of the treatment.
So far, I can't complain. I will be glad to finish the Taxotere, (just 2 more to go) because I am starting to get neuropathy. But I am so pleased with the results.
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Just wanted to drop in since i started this thread back in December 2014 to report that my PET scan in March of this year showed NED for me. I had many, many liver lesions (a couple very large) and many rib metastases, which are no longer present. I am very excited and cautiously optimistic about Herceptin in particular (along with Perjeta) as targeted therapies for us HER+ girls and hope that many more benefit greatly from these drugs for many, many years to come. Ann
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congrats all on your ned
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Great news Teakie! Congratulations!
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Hello All,
I finished Jan-April with TPH ( Doxetacel/Perjeta/Herceptin) and now on 3week infusion with just PH.Few side effects. Hair funky on head..didn't fall out when I shaved it in January.
have had mild upper arm, trunkal lymphedema since 2012 ....
Had a 2nd port installed two weeks ago tomorrow...Maybe anesthesia has slowed down my brsin. Had a contrast CT scan before that. Have delayed recall memory..working hard to overcome this fooba.
Q. Both when I was on Tax and now on PH have periodic edema in upper legs, lower torso, not bad, not chemo belly but noticable. Not all the time. Weight slightly up from 148-150 I seem to have a more sluggish metabolism..I am turning 65 this summer.....( cancer treatment TCH 2012 weight went from 163-153....got a dog and weight continued to go down..to the 146....breast free since 2012/2014...
.ECHO fine, NED ( for the second time) as of most recent CT scan. Heart,lungs good. Eating a bowl of doctored oatmeal...maybe too many calories in it..or the bittersweet chocolate....
Maybe I am just eating more than before, or walking less due to pollen.
Will be working with my trainer,etc. and working with my great dog and neglected garden..The Herceptin nose keeps me from bending over a bunch...By the way, Coldcalm works well with the nose thing.
I find having METS a bummer especially when BCBS lists the price of the drug treatment....My insurance pays most of it thankfully..
Anyone else get that bloaty thing???g( Not chemo belly) ....
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Hello newbie - On one occasion I did get bloating. It was extremely uncomfortable and started between my ribs. High up. It actually affected my breathing. I experimented with taking Beano (thinking it may be gas) and it did make a difference but didn't resolve it completely.
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newbie...you didn't say whether you're on an AI. I had "awesome" weight loss (36lbs) on Navelbine & when I went off it & back on femara, the lbs (14) came back. My onc (jokingly) said chemo is NOT a weight loss plan...I agree...and DH said it's 14 lbs of health, so be it. I don't really notice edema, unless I've not drunk enough water or have salt overload. I think we need lots of water on this tx! My recall sucks..but I just admit it & try to not be too bothered. The nose drip is another story! It's so embarrassing, also when I bend over, out of nowhere!!! I have allergies too, but I didn't have this w/herceptin only. Good luck w/your trainer!
Shutterbug! Lump be gone!!! I can hardly wait for NED to crawl in bed w/you...and we'll chain him there so you can't kick him out in the middle of the night!!!
Teakie...Happy Dancing for you!!!!
Pwilmarth & Josalive....you are very right about time on your side w/h & p! With my first dx (stage 2-2009), I had carbo/tax/h. Had h for a year...unbeknownst at that time, my her2 cells started their party again, and a year later, same spot in breast. Clean for 1.5 yrs (after mx & diep) then liver mets. My onc, thru tears, said she knew I should've been kept on herceptin from the get go, but no ins would fund that, having no evidence of bc/mets. Stage 4, her2+...thankfully, there's no question. Would be awesome if someday h/p could be a pill that even stage 1-3 could take if you're her2+.
Went to Mariner game today...Happy Mother's Day to all Moms! The first pitch was thrown by a young mom who found out she had stage 4 bc when pregnant. She was there, with little hair as she's in chemo, with her DH & 6 month old DS. Players wore pink socks & long sleeve shirts under their uniforms. As we all agree...we need a Cure (I like that C word too, Shutter!).
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Hi newbie. Sorry for your bloating thing - must be uncomfortable. I haven't experienced this, but I have noticed that quite a few if us on this thread report putting on weight after settling into our PH only regimen. When you think about it, it makes sense: chemo is no longer randomly killing our cells, cancerous or normal ones, right? I'm willing to be rounder if it means I'm staying stable. Hope you feel better soon. SUE
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Hello All,
I finished Jan-April with TPH ( Doxetacel/Perjeta/Herceptin) and now on 3week infusion with just PH.Few side effects. Hair funky on head..didn't fall out when I shaved it in January.
have had mild upper arm, trunkal lymphedema since 2012 ....
Had a 2nd port installed two weeks ago tomorrow...Maybe anesthesia has slowed down my brsin. Had a contrast CT scan before that. Have delayed recall memory..working hard to overcome this fooba.
Q. Both when I was on Tax and now on PH have periodic edema in upper legs, lower torso, not bad, not chemo belly but noticable. Not all the time. Weight slightly up from 148-150 I seem to have a more sluggish metabolism..I am turning 65 this summer.....( cancer treatment TCH 2012 weight went from 163-153....got a dog and weight continued to go down..to the 146....breast free since 2012/2014...
.ECHO fine, NED ( for the second time) as of most recent CT scan. Heart,lungs good. Eating a bowl of doctored oatmeal...maybe too many calories in it..or the bittersweet chocolate....
Maybe I am just eating more than before, or walking less due to pollen.
Will be working with my trainer,etc. and working with my great dog and neglected garden..The Herceptin nose keeps me from bending over a bunch...By the way, Coldcalm works well with the nose thing.
I find having METS a bummer especially when BCBS lists the price of the drug treatment....My insurance pays most of it thankfully..
Anyone else get that bloaty thing???g( Not chemo belly) ....
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While I'm not happy to hear that others have gum problems, that explains the mouth pain I've been having on Perjeta. I also take Herceptin, but I've been on that nearly 5 years, and haven't had problems. Since starting Perjeta I have horrible abdominal cramps and diarrhea at least once a week, and big nasty hot flashes several times a day. I was outside yesterday in a T-shirt and shorts, and it was 45 degrees. It was the only place I was comfortable. I'm sitting at my desk sweating right now. I have a fan aimed at my face so I don't melt.
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Hi Newbie – Congratulations on finishing your Taxotere.I have not had the bloating that you describe, but I am definitely "thicker" around the middle, despite staying roughly the same weight (give or take 5 pounds...ok, more give than take). I think it is from losing lean muscle and gaining fat.
Ronnie – Tying NED to the BED, that gave me a chuckle.Hope you had a great time at the game. Touching that the players wore pink. Bring on the cure!
LindaBee – sorry to hear about your gum and abdominal problems. Are you on any anti-hormonals that could be causing your hot flashes? I've heard others say that they take Effexor for hot flashes, not sure if you've considered it.
Keep on keeping on ladies!
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AND WE'RE OFF! Just to stay in touch: beloved husband and I are leaving for NewMarket UK to see dearest son, astonishing daughter in law and grandies, and then on to Edinburgh, Scotland. I won't know what's happening on BCO unless the hotel has wifi (!). So grateful that I am well enough to make this trip. Hang tough, ladies, and back to you soon. SUE
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Have a GREAT time Sue. You deserve it!
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Have a wonderful time Sue! Nothing compares to love!
Excited to hear from you when you get back. - Karen 0 -
Hi LindaBee and everyone else who replied. Thanks a bunch and ahappy Summer.
Linda Bee:
Some things that helped me with the mouth thing..
Make sure you are taking adequate protein and vitamins...
Replace your tooth brush often, monthly. Dont store it near the toilet.
Be sure and check temp of all food.
Icy foods may help a little but too much of a good thing.....
At the first sign of mouth issues use Glyoxide...very gentle, very soothing and healing. Swish,spit, swish,spit.
Use Biotene toothpaste..pricy but works and not harsh..I did not care for the mouthwash.
Add cinnamon to your food
Try lemons in your water.
Drink bottled water until they clear up.
I swear by a tsp-tbs. of coconut manna mixed in a food......soothing...Also try unsweetened coconut with irish oatmeal.
I swear by a refrigerated probiotic...
Yes, I notice I sweat a whole lot more. ( I am turning 65...thought my flash days were over...)
Newbie N
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Woohoo Sue! Have fun with all your darlings!!!
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HAPPY BIRTHDAY, SHUTTERBUG!!!! Have fun with your Mom & Aunt :-)
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Where is everyone???? Doing well & too busy to post, I hope!
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