HERCEPTIN and/or PERJETA Threads
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Scrunch, I asked my oncologist the question about stopping H&P and her answer was "we don't know". Which means they have no studies on it yet. I did hear one breast cancer oncologist say they haven't quite worked out just who should get Herceptin only and who needs H&P, since the combination is quite expensive. So there might be some research at some point that identifies who needs perjeta and who doesn't.
I'm conservative on these matters. I wouldn't even want to think about stopping H&P without some solid data saying it's okay to do so, or there is evidence that the disease has progressed. Or that a new more effective treatment becomes the first line of treatment.
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Shutter your GYN doesn't understand HER2+ breast cancer treatment, if surgery is timed just right you shouldn't even have to miss a dose! My MO dropped the taxotere this round and I only had HP (no premeds at all), one week later I am having breast surgery and two weeks later HP again. I think I might even see a couple of eyelashes trying to poke through! I feel so alive and energetic without the taxotere and nuelasta! I might shed these extra pounds that creeped on over the 6 months of treatment! I'm sure your ovarian friend...what did you call him ?Bert is benign especially when palpated it hurt! I know it is impossible to not worry and wonder though...time goes so slowly when you want answers.
I'm a little terrified of my upcoming bilateral mastectomies with immediate reconstruction Feb 2 😬😬. I decided to not do tissue expanders but wake up with it all done like Angelina Jolie did. Nipple sparing with implants and alloderm. I will let you know how I do. Couple of drains and some painkillers I should be fine. Many of you have survived this too.
Josalive, I see a liver specialist Feb 16 - not sure what the plan will be or if the less than 5mm lesion will still be there...likely RFA...?? Unknown world again??
I will continue taking HP as long as they will give it to me...wouldn't it be nice to have Ned and need to wonder about this in 6 years?? By then we will all have a vaccine and smooth sailing to 84! That's my plan anyway 😉 Being ERPR neg I will feel better having something kicking around.
Hugs to all of you.
Barb
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Oh and they are taking out my port during surgery as is is so low it's really in my breast. I will just get an IV for HP for awhile...do you all have a port or are you managing long term with IV starts?
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Barb:I've had my 8th treatment (6 with taxorere) and still no port, just IVs. I'm sure I will get one, it just hasn't come up much yet and my MO says to postpone until it becomes problematic. Good luck and I will be thinking of you!
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bstein, I'm on my second port. First port was lower in my chest, close to the breast. It only worked correctly once and every time after that they had difficulty getting blood return when they tried to aspirate. They had to use a clot buster two times to open it and the last time they had to start an IV.
They placed a second port higher up in my right chest closer to my shoulder. It's worked fine since. The doctor who did the procedure said that the lower placement often fails.
I think it's really up to you if want to get another port. If you're tolerating the IVs that's good. Since we're on this treatment for life, I just get concerned about scarring on the veins with frequent IVs, making each needlestick harder and harder.
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Shutterbug73 I had my ovaries and tubes removed November 3rd. My 9th and last taxotere was on Tuesday the 29th of September. I was still on HP every three weeks and did not have to come off HP before operation. Operation went well, no problems at all. Hope this helps.
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Thanks for the advice ladies. I have a feeling my Onc will agree to let me stay on H&P for surgery. I see him on Tuesday.
Bstein - best of luck with your surgery on the 2nd. You will be in my thoughts.
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Hello! I'm pretty new to this thread, but I've been reading everyone's posts. I'm encouraged by so many of your good results.
Good luck with surgery shutterbug! I used to get ovarian cysts all the time when I was younger. They went away when I was on birth control pills, but they came back after I discontinued them. I got pushed into early menopause 8 years ago when I first went through chemo, and I've been there ever since so no problems, but they definitely hurt when I had them. I would expect you to be able to stay on H&P. I had surgery to replace an implant when I was still on Herceptin, and it really wasn't a big deal.
I see lots of discussions here about tumor markers. I had mine tested at the beginning of treatment and they were a jaw-dropping 857. Yikes! I just had them tested again after the first 3 weeks of treatment, and they've already dropped to 408, so we are definitely on the right track! I'm hoping I get drops like that every three weeks!
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Welcome DGHoff!
Feel free to pose any questions you have - we have been there! Hopefully we can help you along your journey.
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So, I have a question about Perjeta. I know loose stools is a common side effect, but does that ever subside? I've only had two doses of Perjeta so far, but man. Seems like everything just shoots right through me! It's manageable, but I can't see this being a sustainable thing long term. How much Immodium can a person take? Does anyone have a good tip for dealing with it?
Thanks!
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I had issues with loose stools in the beginning. With each cycle, it became less and less of an issue, and now I get constipated. But they were still giving me Zofran for nausea on the day of the infusion (even though I'm never nauseated). Last infusion, we did without the Zofran and there was no constipation.
A lot of this is also going to depend on what other drugs you're taking. Up until last week, I was on a cocktail of things to manage my neuropathy (narcotic pain relievers and Gapapentin), which in combination with Zofran was causing constipation. My neuropathy is getting better, so I'm using less narcotics and I haven't used Gabapentin this week. Next infusion will be Wednesday, so I'm gonna find out if loose stools will flair up now that I'm not taking so many drugs.
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^^ is correct, I think, in saying it probably depends on the other medications you are on. I have gone from one extreme to the others more times than I can remember. But ask your dr for lomotil. It's stronger than Imodium. Back in the day I was having to take 8 a day. It does make me a little drowsy...but it's not like I was going far from a bathroom! Good luck
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I'm doing just Decadron, Benadryl (oral), and Pepcid and doing Herceptin and Perjeta once every three weeks and Taxol once a week. I've had 5 Taxols and two of the Herceptin/Perjeta. Oh, and Xgiva shots once a month. I've had all the other drugs previously except Perjeta and Xgiva, so I'm pretty sure it's the Perjeta causing the loose stool issues. Maybe once I'm done with Taxol it will subside a bit as I'm sure the combo isn't doing me any favors, but I will ask about the Lomotil. Thanks for the tip! I'm trying to take the immodium more frequently and that seems to be helping.
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Taxol is the one with the most side effects and it's particularly harsh on the GI system. It's the one that attacks the fastest growing cells (including the healthy ones) and the lining of the GI tract is full of them.
Once I came off of taxotere, things settled down a lot. It took a couple of cycles without taxotere before everything became more normal. Interestingly, it was about the time that my hair started to grow back that I noticed the improvement in my bowels.
You'll have a better sense what life will be like after you finish the taxotere.
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Tumor markers are normal! CA 15.3 is at 22.
I am slightly anemic, however.
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Good news, scrunch. I too stay very slightly anemic - par for the course I am thinking. Doc says one can't actually affect it with diet or supplements, caused by the chemicals. Small price to pay for good results, yes? Best to you, SUE
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Scrunch: congratulations! Great news.
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Congrats Scrunch!
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I still have the diarrhea at 18 months on H&P. Probiotics help many people. Lomotil as mentioned above. Adding bulk to the stool with Metamucil is helpful to some ladies. I've done it all...and still it continues for me.
What is bothering me is that the eye drip and runny nose is getting worse as each treatment is added. Since I am a lifer, any suggestions would certainly be appreciated
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Beat, no advice for the diarrhea - I go the other way for a few days after treatment, then go really loose for a couple of days (Immodium works for me), then normal. It must be dreadful to have to deal with the Big D ongoing - I am sorry.
Re: the herceptin drip, I've just given up and invested in some pretty handkerchiefs. Geez, what we have to do. Good luck - SUE
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I don't mind the loose stools, better than constipation and I can live with that side effect!
I am now two weeks post-op following my bilateral nipple sparing, immediate reconstruction, mastectomies. Drains are still in but I'm feeling pretty good. Results show no residual invasive cancer, the sentinel node was positive on frozen section so the surgeon took more. The final path results found the sentinel node to be negative but there was 1 lymphnode in my breast tissue that was positive for macro-metastasis and treatment responds...so I guess I have 1/11 lymphnode positive. At least there is no residual disease, margins are clear and no radiation is needed.
I saw the liver radiation guy to treat the remaining less than 5mm leasion and I choose to do the RFA. I don't think he understands HER2+ breast cancer at all. I wanted to punch him in the face. He wanted to discuss goals of care which is a big thing here in Canada...wanted to find out if I wanted resuscitation if I coded because why would you resuscitate a stage 4 cancer patient. Like really! I said I will be a full code thank you as I plan to live many more years! That was a bad day for me but I have become my positive self again...jerk face!
My last taxotere was Jan 4, where are those eyelashes! My hair is coming inthough.
Huge to you all
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Oh yeah, bstein, I am prepared to be fully resuscitated should I code at this point. There is lots of life in the old girl yet - glad to hear that somebody is on the same wavelength as me. I plan to adjust as necessary. So glad that you are doing well, honey. SUE
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bstein, I have very good quality of life and I am not ready to go just yet, so of course I don't want to be a DNR. That decision can wait for a little bit .
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My dear Mom, 86 years young, was recently diagnosed with stage 1 HER2+ and Estrogen+ breast cancer. Lumpectomy performed, two lymph nodes taken, no cancer there. But doctor recommended Herceptin and Raloxofin. Mom had her first IV of Herceptin yesterday and was so pleased that she felt no ill side effects afterwards .... until today, the day after. She's had diarrhea, some nausea, and super fatigue. Does anyone know if these side effects fade in time? She's happy for the Herceptin to get the bad guys, but I can't see her lasting long with such fatigue. Thanks, all.
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Hi Beatmon,
Re diarrhea thing...Mine is cyclical..about mid cycle..days 13-17 mostly. Really inconvenient.
All things in moderation. Remove one food at a time from your diet and see if that helps.
Some things that helped me...
Stop all milk products, except plain greek yogurt. Have a refrigerated probiotic.
Avoid cows milk, prepared foods. Substitute unsweetened coconut or almond milk. ( An acquired taste..refrigerate). . Can be used in cooking, and in your oatmeal.
Reduce your sugar intake...( that includes all diet drinks, OJ, etc.), cookies, etc. No cake, sweet rolls, candy, especially peppermint. Eat bittersweet chocolate chips instead of a candy bar. Fewer sugar calories.
Drink mild warm water throughout the day. ( not hot hot). Mug of hot water or weak tea makes you feel better.
Eat Irish oatmeal well cooked in the mornings.. Add a few dry roasted chopped pecans, not walnuts. Add unsweetened almond or unsweetened coconut milk. Enjoy.
Avoid any fresh fruits or raw veggies. Have some nice mild veggie soup with some dry rice cakes. Add veggies, a little cooked chicken, rice, etc. Add a cooked sweet potato. Nice meal. Have extra rice cakes before bed ( plain rice, no sugar, other grains) .Avoid white potatoes.
Plain toast with a little butter ok. Raisin toast has been good for me and lasts a long time in the cupboard or freezer. ( Some people can't eat raisins). I also eat craisins with my oatmeal.c
Reduce your milk chocolate ( I don't drink coffee) I drink very weak white tea. ( no milk, no sugar) .
Eat meat sparingly, no lunch meat or peanut butter. No pimento cheese or prepared cheeze spreads, avaoid any cheese and see if it helps. Avoid pizza except in small helpings.
Eat this diet mid cycle...maybe it will help.
Keep something on your stomach if possible but don't tax it with heavy meals..eat throughout the day. Drink water. If leg cramps from dehydration I use a magnesium calming drink in moderation. I do use a daily probiotic, and a pre and probiotic vitamin but not daily.
I also go to Trader Joes and buy a Korean aloe drink ( 85 per cent aloe) and take a small amount to heal up my stressed digestion. I occasionally will use a slippery elm pill a few days before to sooth my intestinal tract. I sometimes have constipation and variable stool issues which is a real inconvenience.
I also do chair yoga, and lymphedema therapy, and have a good acupuncturist. All can help make you feel better. I also walk a mile a day. I am 65. Been on Perjeta/Herceptin one year, after 4 months of P/H/Dox.
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My onco doc and I agreed to reduce my perjeta dose a bit, but maintain every three week schedule. Take a perjeta/ herceptin holiday and see if a couple weeks off helps heal your digestion. It worked wonders for me. I was traveling out of the country for vacation. Two weeks really helped.
I am sensitive to regular doses of all drugs so I don't need as much as most people. As you age your body becomes less efficient at processing drugs,food, etc.
Regards,
Newbie2011
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For drippy nose I use Cold calm...homeopathic, and dries up my nose just enough.
My house is moldy/mildewy seasonally due to high shade, and I find leaving home and being in AC helps. My nose runs less away from my home. I change my furnace filter monthly. I use a high end vacuum and change the bags often and get someone else to vacuum otherwise my nose really runs. I buy a lot of tissues too.
Some people have found Ayr's jel in their nostrils tip helpful. Good luck.. One friend uses chap stick ( reserves it for her nose.
Acupuncture helps some people like myself.
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Thank you for all of the suggestions. I've tried many already
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Ladies,
just a little positive update regarding H&P. Off chemo (taxoter) since 29th Sept and on H&P every 3 Weeks since. Was apprehensive getting bone scan (19th Feb) and CT scan (22nd Feb) but am very happy to let you know that my scans were good. Things remain stable and treatment plan will continue with H&P every three weeks with Zometa every six weeks.
Kind Regards,
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Judo: great news! Thanks for sharing. It's always good to hear when this stuff works!
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