HERCEPTIN and/or PERJETA Threads
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Hi Beatmon,
Funny you should ask... from notsonewbie ( newbie20111)
I took a Perjeta vacation for two cycles and am ending my "just Herceptin" for last two cycles.
I was fine the first cycle off Perjeta. Some minor neuropathy in feet. Ok now.
...This past second cycle off Perjeta I had all sorts of unusual symptoms including a shingles type rash on what looked like bug bites on my arm, and trouble sleeping some, and more issues with bowels ( maybe from trying to eat more healthy. ) ..Summer sweet corn and picnics?
I also have recurring minor neuropathy in my left forearm....brachioradial puritius ( itchy left forearm) caused by sun, chemo, too many procedures ( like CT scan contrast, blood draws,) in my good arm ( the other has lymphedema), etc. Also left handed, and broke my left clavicle in 2008 and have had two different ports in my chest on that side as well. ( No radiation that side, but Propylactic left mast in 2015. ( Cancer right side with nodes and rt. mastectomy and rads in 2012" and cellulitis, then more chemo in 2015-. ) Do acupuncture and lymphedema therapy and chair yoga. Some gardening. All good!
[..By the way, ice pack and coconut oil, very helpful in treating brachioradial purititus. This permanent condition waxes and wanes.]
...I am at Herceptin Day 19 or so..this past week has been a challenge...felt fatigued, earlier in the month more energetic. Unusually feel better. Maybe a little "flu ish". Very sleepy in the afternoon. Napping...not an afternoon napper. Maybe my thyroid? Maybe 9/11. Maybe dog days of summer???Maybe my tumors are growing again? Feels like 2012. Tired then. Go back on Perjeta on Friday. Scan in November, see doc/labs soon.
Could be my body is just getting back to normal ( some hot flashes..way past menopause) and more reactive to my body environment. Allergies worse, etc. Perjeta/ Herceptin seems to dull everything.
[I had been on Perjeta/Herceptin since Jan 2015 ( also Doxetaxel Jan-May '15) for local regional reoccurrence nodes, skin mets on radiated rt. mastectomy side) with a short break the summer of 2015.
Except for below the waist spare tire ( which lessened greatly off Perjeta), I only have Herceptin bloat/belly and that weird Herceptin bowel funk....improved by unsweetened coconut and keeping up my magnesium. Homeopathic gas reducers helpful too. Too much sugar and grains and veggies also made things gassier and make me feel off.
Maybe we all need a nice vacation!
Check your vitamin levels, especially Vit. D and magnesium levels.Newbie 20111
Have you had your Thyroid checked as well as Lyme's test?
Newbie 20111
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Beatmom, I'm like you. I haven't been without Perjeta and have no interest in taking a vacation from it. One of the things you read on this board is the women who decide to take a break and then the buggers break out again. Then you're in a pickle with your insurance company because they no longer consider you first-line MBC, you're "heavily pre-treated" which gives the insurance company the right to deny your Perjeta (which is very expensive compared to other treatment options available).
My quality of life is good on this regimen. I don't think it's worth the risk to come off a treatment that is working without a very good reason.
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Hi Maine/Scrunch and all -
I have been on the taxol (they recently changed over to Abraxane because I had an initial reaction to taxol) and H & P since eary May. Have about 2 months left to go on the weekly Abraxane treatments and will always continue with h & p. At the 3 month mark my doc was happy with the scans and some tumors disappeared while others went down significantly. (Lesions in liver and multiple vertebrae in spine). Another scan in 2 Months and then they will reevaluate possibly taking a chemo break
Question : my tumor markers started at 72 went to 111 after a chemo session or two and has now been down to 20, and currently 13 over the past 2 months. How exactly is NED (no evidence of disease) determined? Is it through these marker numbers, or results of scans? What is it that indicates possible NED for us?
Glad to hear the positive news and results here!
Thanks
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...so this relentless itch on my left forearm is a neuropathy? I had no idea. The sun definitely makes it worse. I guess I will mention it to my oncologist. My final visit with him is on Thursday, he's moving and they still do not have a replacement for him. They hired someone but she backed out at the last minute.
JCNC, great news about your tumor markers! My oncologist never says NED as I have sclerotic lesions on many vertebrae that remain as evidence on CT, I also have uptake on my bone scan. He does use NEAD when referring to me as I no longer have uptake on PET, so no active cancer cells or not enough to see at this time. YES!!
My MO and I have discussed taking a Perjeta break but there is strong evidence that my cancer is Herceptin resistant because the cancer spread (or never went away) so quickly after my initial treatment. Naturally, I am reluctant to stop anything which may be helping me. I would like to feel better than I do. No, I don't feel fluish but I have extreme fatigue and pain/stiffness. My GI is too unpredictable to be away from a bathroom for very long. I don't remember feeling this way on just Herceptin so I am blaming Perjeta for these symptoms but it's a small price to pay for an extra layer of protection.
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JCNC, we've never done tumor markers on my cancer. It's always been PET scans. My regular MO is on maternity leave and I met with her replacement last week. He used the words Complete Remission. I was on a plan to have routine labs drawn every 6 weeks, and we now have moved to every 9 weeks. My labs have always been normal, but they were following them closely while I was on Taxotere.
Apparently the markers specific to breast cancer may be elevated for up to 90 days after chemotherapy is stopped. So the cancer may be in remission, but you're body hasn't finshed the cleanup work yet.
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pwilmarth-how do you feel about the MO's comment "complete remission"?
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try taking advil for the Itching arms.... works for me most of the time and when it doesn't I ice it.
The big D in my case has been tamed when I switched from Zometa to Xgeva
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Positive-Negative, Using the words Complete Remission fits with what I understand about the type of cancer that I have and what my regular MO said six months ago and six weeks ago. Both of them have said that they are seeing long remissions with HER2+ breast cancer, especially with H&P. It also lines up with what I've heard the oncologists on OncLive report about their experiences with this disease and H&P. There are two other factors that tilt this toward a long remission - first, I was diagnosed Stage IV De Novo, meaning that the cancer hasn't been exposed to other therapies and my cancer fits with the term oligometastatic because there were only two tiny spots on my liver that responded rapidly to therapy.
During my last visit with my regular MO, she mentioned that sometimes they have stopped Herceptin because of cardiac toxicity and the cancer doesn't return. My MUGA scans have always been good, and, other than some leftover neuropathy from the taxotere, I feel well But there isn't an oncologist who can guarantee that stopping these drugs is safe. So I consider this a small price to pay for keeping the disease under control. I also know that there's always the chance that the cancer comes back. But it may be years before that happens and I'm 62. Every day is a precious gift.
There are many things to be thankful for. I could name many, but one of those things that we call simple pleasures was being able to watch the Denver Broncos win Super Bowl 50 in January and attending the parade that followed. And being at the stadium last week to watch the team beat the Panthers again in a close game. as well as the pregame ceremonies celebrating the three previous Super Bowl wins. A year and a half ago, I didn't know if I would still be alive. Should the Broncos make it again this year, I'll be at that parade again next February.
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Have a friend who is doing very well living her life to the fullest--travelling, etc. etc. who has been Stage 4 Her+ -er-pr since 2011. Initially she had Taxotere, continues on H and P every 3 weeks--- says she'll be on it "forever". She's an inspiration to me since I have(HAD I hope!!) the same type BC almost 2 years ago. Two in my BC support group are Stage 4 Estrogen Positive have been Stage 4 for 8-10 years, NED and doing fine. Lots of success and hope out there.
Best wishes to you all for many more happy years!
Stephanie
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Thanks everyone for sharing your GI issues on H/P. I kind of always feel like I have a bit of tightness in my stomach, and I get a lot of bloat in the belly. I'm guessing it must be from the Perjeta. I also keep the Immodium in stock and never go too far without a couple of tablets in my purse. I also have had a lot of weird leg cramps and now I see that seems to be pretty common too! Kind of a relief to know what is causing it, but I will try the magnesium. Thanks for that tip!
These little issues are a bother, but if it keeps things under control, I can live with all of that. Other than those little things, I feel really good. No sign of NED for me yet, but I have CT and bone scans at the end of the month and we will hope for some good results. The tumor markers have been down in nice normal ranges for about three months straight, so I have hopes for more shrinkage at the very least.
I lead a yoga class at my local Gilda's Club cancer center, and I met a woman yesterday who's also been living with stage 4 BC for eight years. She is still doing great! It's so encouraging to hear these kind of stories.
Thank you all for being here and sharing the journey!
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Thanks to all of you who have contributed with their good news regarding H/P. Once again leaving this thread in a positive mood. 6 monthly Bone Scan tomorrow followed by my usual three weekly H/P and 6 monthly CT scan on Monday. Hoping that the H/P is "doing its thing". xx
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I have been reading through this thread and been very pleased at all positive updates. I started Carbo last Thursday and Taxetere and H and P will be added to the mix. The oncologist mentioned adding in a treatment next week if my counts will tolerate it.
The biggest thing I noticed with the Carbo is lingering nausea. I was dealing with it from day 2-4. Dexamethasone has been added to the mix to help with that issue. I don't recall feeling lingering nausea with A/C or T/C but who knows?
I am looking forward to these pesky mets being beat into submission for a very long time. It appears the H and P are quite doable. And, reading the positive reports has me very pleased.
Blessings to all!
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I am feeling great almost 15 months since diagnosis. I am on a tour of Spain and Portigul between my H&P treatments. Cramps are gone as long as I take my calcium and magnesium (been busy walking and sightseeing) I expect diarrhea around day 15...hoping a bathroom will be handy! I will never volunteer to stop any treatments, it is a chronic disease which I plan to keep away forever! Hugs to you all! Next scan Sunday Nov 4. I went on a tour itodayn Porto, Protugal at a port cellar. The woman who started the company 1811-1896 lived a long time for the 1800! I guess sipping port is the answer 😉
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Portugal is a beautiful country, BStein! Drink some delicious port and post a photo or two so we can live vicariously!
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Found this while looking for something else and thought of you!
Healing thoughts, Stephanie
Expert Recaps Recent HER2-Positive Breast Cancer Treatment Studies
Laura Panjwani
Published Online:10:07 AM, Wed September 21, 2016
- See more at: http://www.targetedonc.com/news/expert-recaps-rece...
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I was diagnosed with mets on the 11th of March 2015 or 18 months ago. My last (9th) chemo was on Tuesday the 29th of September 2015 and since that date I have been on P&H every three weeks with Zometa every 9 weeks. To-day I got my latest bone and ct scan results (last scans were done in February) and I am happy to say that everything is stable. Just want to share my good news as it just may lift the spirits of someone out there who is beginning their P&H journey. xx
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Congrats on your good results Judo!
Bstein - We need some Portugal photos. It sounds wonderful.
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Great news, Judo!
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Agree, Judo! Thank you for sharing this wonderful news!
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Stable is very good news. Congratulations Judo!
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Does anyone know if there is anything that is being worked on for h & p in pill form or something whereby we won't need to do to treatment every 3 weeks? I'd obviously sign up for going every 3 weeks for treatment for the next 50 years, but just curious if there are any trials out there on something like this. Or if it will really never be a possibility. Thanks
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JCNC - there are some treatments for HER2+ breast cancer that they are working on that can be taken in pill form, just not Herceptin and Perjeta. Some drugs aren't absorbed through the stomach and intestinal tract and have to be given IV.
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Ladies, my dance with NED has ended. Latest PET scan shows two new spots on the liver, one on my left hip and a spot on the brain.
Next step is T-DM1 and a visit with the radiation oncologist after a scan of the brain tomorrow.
I've enjoyed sharing my thoughts with all of you, but it's time to join the T-DM1 group.
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Pwilmarth - So sorry to read about your progression. I've read and heard that TDM1 is very effective. My guess, you'll be dancing again with NED very soon.
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Pwilmarth - so sorry. Why don't you check out a clinical trial before Kadcyla? I am also on H&P and I just had my scan, which is NED, thankfully. But while I was waiting... I thought long and hard about what I would do if there was progression. I decided I would seek out a trial and save TDM1 for later. There are lots of HER2 trials, including Margetuximab, a few HER2+++ vaccines, and the famous Tumor Infiltrating Lymphocytes that adventureswithcancer writes about on Inspire.
Best of luck with whatever you decide.
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Help! Pretty please. Dr wants to drop chemo ( navelbine) and have me stay only on herceptin/ perjeta even though yesterday's scan shows a small increase in my main liver tumor size (from 2.4 to 2.9cm) and suv.
She said, all the other spots are gone, so maybe all you need is a break from chemo so your immune system can take care of this one. What?!?!?
I have my regular appt next Tuesday and I plan to tell her that I disagree, but what do I do if she doesn't want to me to stay on navelbine for a little longer? Do I go downstairs get the h/P infusion and find another Dr? Sigh.
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Gramen - Get a second opinion. :-)
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Things are still pretty early in the treatment plan and not everything is completely decided yet. The standard of care is T-DM1 as the second line drug and it's been very effective in clinical trials. I've done enough research on clinical trials for HER2+ breast cancer to know that most trials are looking for patients who have progressed on at least two protocols, so I think I need try T-DM1 first. Apparently there are some trials that use T-DM1 with newer drugs that cross the blood-brain barrier.
At any rate, I have a few questions I need to ask my MO, who is new to me. And a consult with the RO regarding what type of radiation therapy will be most appropriate for the brain mets. But it's a one-day-at-a-time process. The right plan will happen after everyone has discussed the best optons.
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pwilmarth
Am so sorry to hear of progression, hopefully the new treatment will do its job. xx
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thanks Scrunchthecat, hoping there's no damage/impact from the hurricane
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