HERCEPTIN and/or PERJETA Threads
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BTW, my brain met was thought to be there all along. No amount of the drugs would have prevented it since they do not cross the blood-brain barrier.
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glad to hear you are still doing well and helping others Mara.
Best wishes,
Liz
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Thanks Liz!
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I just got my fifth taxatore and he lowered it 10 percent. So he has lowered it a total of 20 percent. I still feel bad, and my tumor markers are in the normal range. I am going to refuse the 6th chemo. I asked him if he thought I could plan my summer vacation and he said yes. Then I asked him how long he thinks I have, and he said a year-maybe two? I thought there were other options and protocols. He is the top oncologist (I go to a Cleveland Clinic Cancer Center) so I am confused. He also said since my cancer began 20 years ago, it is not aggressive. I just don't have much hope. I know this will take my life, but it seems some women are living a long time with it.
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Wow, 20 years! I would love that...I'm hoping for 5 decent ones. Just diagnosed in Sept w/stage 4 metastatic, right out of the gate. 1st chemo down. Herceptin, Perjeta & Taxotere. Triple +, so that seems to be what works now. I'll go through all this chemo once, but I wouldn't do it again....I'm 70 & want whatever years I have left with my family to be good ones...if I starts to get bad, they can make me comfortable & let me enjoy what's left......good luck with your decision to stop the chemo....mine isn't curable, but I'm so happy you've had this such a long time....to enjoy family & friends....I still feel 'cheated', but not sure I've totally accepted it all yet, but I suppose that will come...meanwhile, waiting for the hair to fall out & dealing with my sore mouth....ugh. Take care, sweetie.
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Lisa - I recently completed 8 rounds of Taxotere, Herceptin and Perjeta. I know that it makes you tired and miserable. I know that it makes you feel down and not care about much of anything. But...... it is really good at killing cancer....and judging by your tumor markers, it appears as if it is working for you. I would suggest asking (insisting) your MO for a PET/CT scan to see what is going on in your liver. If it shows improvement, maybe you can skip that last dose. Dig deep, you can do it. As stated by others in this thread, the Herceptin and Perjeta are a cakewalk. You have already accomplished so much, don't quit now. Hugs.
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Lisajo, both times we tried to add a taxane to the herceptin/perjeta, I was unable to tolerate them. My MO fought to allow me to take Herceptin/perjeta only without taking 4 to 6 chemo with them. I am still NED below the brain. I had a grand total of three cycles of taxol/taxotere. If QOL is miserable, advocate for yourself with your onc . I recommend to keep the H&P going as it is very good on its own. As another person pointed out, SE are mild in comparison to inclusion of a chemo.
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LisaJo - I think you could probably quit if your numbers are normal, but that is a decision only you can make. I know how crummy you feel at the end. I remember being super upset when my onc wanted me to go just one more round, but I got through it. Once you are off, you will bounce back pretty fast, and Herceptin/Perjeta are pretty easy to take. I've been on just those two now for about 18 months and I have no signs of progression. I'm not NED, but I'm stable, my CA 27/29 numbers are 13, and I feel really good. I don't see how your doctor could say you might have two years as how does anyone know? I'm two years out almost and have no signs of anything going awry. They just don't have a ton of data on this combo, but my onc feels that this combo has been a real game changer. She has many patients just like me who are still doing great several years in. Don't let your crazy doctor tell you how much time you have. Look at all the amazing ladies on these boards who have been living with this for years. Don't lose your hope. Hugs to you, friend!
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LisaJo I am stage 4 had taxotere in May with 6 rounds ending in August this drug gave me the ability to be NED . My CA 27/29 started at 1200 and last reading was in a normal range. I had little side effects which I am still dealing with. I found if I walked everyday even on the days I had chemo the side effects were less. His opinion of life span is just that. your power of positive thought can outdo his opinion. I have met woman with stage 4 as myself going strong in their 70's after 10 years with these drugs . I do believe it's the power of thought and keeping positive and focused
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I keep reading that there is a tiny sub-set of women - 2% - with MBC stage 4 who have lived for many years...in fact, asked my onco today at my 1st lab appr after 1st chemo last week.....I asked her if she'd ever heard of this 'sub-set'....she said yes - she has one patient who has lived 19 years with it! Said there is no explanation, so she doesn't look for one...just every once in a while they show up! Even though it's rare..still gives us a ray of hope, right? I'm still reeling from my diagnosis a month ago, going day by day...and going out for my walk now
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Longtail, I read a lot about the sub set when first diagnosed too. I was considered oligometastic with a single bone met and very encouraged by the possibilities. I doubt I'm considered oligometastic now with the recent discovery of 5 small brain lesions but I guess it depends on the definition of a "few" metastasis. Either way, you never know, treatments, biology and luck all have roles to play. I've come to believe that staying active and as pain free as possible are critical though.
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Hi ladies - I log on occasionally, but not that much lately due to my crazy work schedule. I will never get through all 56 pages of info here, so just going to ask: with initial DX, my drug combo was TCH. This time it is THP, so Perjeta is new for me. I have had awful gastrointestinal upset. Very different from last time. From the drug info, diarrhea appears to be the #1 listed side effect of Perjeta. Just wondering, anecdotally, if others of you have had a very cranky intestine on Perjeta. I just NEVER get that... I had never in my life even bought Imodium before! I feel like most people say they have pretty minimal side effects with Perjeta so it has been kind of a shock. Thanks for sharing your insight!
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Lumpie- I did have some GI issues when on TCHP, but now that I'm only receiving HP, the GI issues are few and far between (maybe 1-2x per infusion cycle). Loperamide works wonders for me. Just stay on top of it with the Imodium. I didn't have GI issues before starting chemo, so it's definitely a result of these drugs in my case. I try to eat yogurt daily for the probiotics, and that seems to help.Hang in there!
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Hi Lumpie/ Erin,
Life for me on HP is pretty good. I have constipation on this tx and aches from Letrozole. I am back at work though.
Erin, how's it going for you?
Liz x
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Lumpie, I don't have GI issues while on HP but when I had the THP I did get diarrhea. I was paranoid about getting diarrhea even on HP so I did start taking an immodium the day of and the day after infusion. Just one in the morning as a security blanket. Once you can drop the T part of your infusion whether it be Taxol or Taxotere, the GI symptoms will subside. HP is pretty tolerable. I currently take a probiotic supplement too since I am not on chemo and my onc said it was OK. I have since dropped the immodium as I did not like getting too constipated. I also flush my system ALOT the day of infusion which makes any other little SE (flushing, fatigue, headache) less intense.
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Lumpie: Keep in mind that your first dose of H&P is much higher than your subsequent doses. So your diarrhea may not be as bad with the subsequent doses. The diarrhea was really bad after my first dose -- Imodium didn't work for me so I had to get a prescription from my MO. Afterwards, I seemed to alternate between diarrhea and constipation, but Imodium worked for the diarrhea.
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Liz,
I'm finishing up radiation this week (27/30 done so far). The fatigue is really getting to me, but I'm hoping I'll get my energy back in the next few weeks. I'm back to full-time mommying and part-time dissertation researching/writing in a week, so I need all the energy I can get! Smooth sailing on the HP, so can't complain there! Glad to hear you're back to work and feeling well!
Xo,
Erin
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Wow Erin,
What a fighter you are. You have thrown everything at this thing and I know you will have your life back very soon.
I see my onco on Thur. Don't think rads will happen for me though.
L
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BellaMom, Mara51506, Liz, MommyErin,
Thanks for the reassurance. Oddly, it was after my 2nd cycle that the bad GI issues hit. At first I thought I had maybe gotten a little food poisoning... but then it came back @ every other day for a week. So unpredicatble. The taxotere has always done yucky stuff to my respiratory mucous membranes so then I figured... 2nd verse, same song. Maybe I'll try some prophylactic Imodium. Appreciate that tip. At least it's reassuring that, if I can get thru the taxane, chances are things will be better. Thank you!!
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hey y'all! Just had my ct scan and bone scan this past Thursday and the results are still NED...5 years on this first line treatment! It has not been easy (3 episodes of c-diff mixes in there), but I feel so thankful for this combo.
For me, the taxol kept me in the bathroom. I had to take the max dose of lomotil every day. And sugar made it soooo much worse (which sucked because I am a big sweet eater). When I came off the taxol, I did not bounce back. I have had horrible experiences with gi issues. I do think perjeta has increased diarrhea at times. But then again I had severe constipation too. I am on too many other drugs with their own side effects and then i take more drugs to counteract those effects. Endless cycle, but i'll take it!
Keep digging deep ladies! Imagine those drugs like Pac-Man—chomping all the cancer up!
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oh kjones.....doing a happy dance for you!!! Best news of the day & ive received a ton of good news! Getting released from the hospital this afternoon after a knee replacement! Will still have an auto pain med in but that I can handle!! Now if it just doesn't snow today as predicted I'll consider it a miraculous day!! Gentle hugs to all!
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Yay Kjones on being NED! Fantastic!
Yes, I had terrible GI issues initially with Taxol and HP. Once i moved on to just HP, it really pretty much went away for the most part. I still have a little looseness here and there, but nothing major and I don't need to take anything for it. When I was still getting the Taxol, I would take Immodium tablets first thing in the morning post treatment and that helped.
I do, however, have some crazy random itching once in awhile on the back of my neck and on one wrist. Just those places. Weird, huh?
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DGHoff, no not weird. I get itching on my right inner elbow area, sometimes on my neck and rarely anywhere else!
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Hello all
I have a question about hair loss and perjeta and herceptin combo...I'm really hoping I can maintain my hair. Any input will be helpful...Thanks for your help ahead of time.
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hair loss is not a common side effect of h&p.
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H&P did not give me hair loss but I do find my hair and nails grow slowly now.
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I too have the same protocal and experience....I switched to Emend anti nas. Drug given during chemo—really has made a huge difference! Yogurt with probiotics has helped too! Take car
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Ditto...my right forearm and elbow itch like the dickens! I finally got steroid cream from Dr. because hydrocortisone didnt even work!
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I've been plagued by diarrhea for over 3 years now...except when I have to take constipating pain medication. I've tried probiotics, Metamucil for bulking up, multiple Imodium..what works best is taking Lomotil before I leave home and 2 before any meal I eat away from home. I have scattered break outs mainly on my arms and itch like the devil after each H and P infusion. So you aren't weird. I'm actually now doing a lower dose of Herceptin on a once a week for 3 weeks to try to feel better from the joint and aches and pain. Not really sure which of the two is the trouble maker. Try not to complain too much since the THP killed out a million lung mets
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Hi all
My latest PET show complete clinical response and no metabolic uptake. So no evidence of active cancer. Remaining on HP and Letrozole and being considered for SBRT.
Liz
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