Testing, treatment, side effects, and more.
Posted on: Mar 3, 2014 09:37AM
waterdog wrote:
I am about to start this series on March 13. Any input on what to expect or your successes would be great!
Posts 61 - 90 (152 total)
Aug 29, 2014 07:48PM samiamaham wrote:
I enjoyed your post! Please don't apologize for its length, I could have read more!! How are you doing now? I'm about to start this Perjeta & friends (I think 4 total) soon. I'm scared, but more scared of HER2....
Thanks again
Sep 1, 2014 10:02AM Beatmon wrote:
do you ache and hurt more where your cancer is after your chemo compared to the rest of you body?
Sep 14, 2014 02:07PM - edited Sep 14, 2014 02:07PM by melani_k
today my sister diagnosed metastasis in Lung ( largest 7 mm) and pancreas lymph nodes after 2 years tumor free. her ER - , PR - and Her2 3+, after chemotherapy AC- Taxol, herceptin used for a year and it has past 13 months of her last herceptin shot. Perjeta is not available in my country and we are worried if we can not find Perjeta what is best substitute regime, Herceptin with Taxotere or ... Please help us if you have seen such case and if you have good information.
Sep 30, 2014 05:52PM Moderators wrote:
Perjeta Boosts Overall Survival in HER2-Positive Metastatic Breast Cancer September 30, 2014
Final results from the CLEOPATRA study showed that women diagnosed with HER2-positive metastatic breast cancer who got Perjeta, Herceptin, and Taxotere lived about 1.5 years longer than women who got only Herceptin and Taxotere. Read more...
The Mods
Oct 1, 2014 02:37PM cschrader13 wrote:
I had DCIS stage 0 in August of 2010 age 35 and was just diagnosed with stage IV breast cancer with mets to lungs and lymph nodes surrounding lung 4 years later August 2014 age 39. I have completed 2 cycles of heceptin, perjenta, taxotere and had a Pet that stated all cancer was resolved. I am going to continue 4 more treatments (a total of 6). This combination is amazing and is a blessing that it is available to me. Best of Luck to you all!!!!
Oct 1, 2014 04:40PM ben50 wrote:
Wow after 2 treatments?! That's nuts in the metastatic setting! Go you! Another good example of the power of Perjeta as highlighted in many recent medical articles.
Oct 2, 2014 03:21AM linzer wrote:
Another complete response here! Had a 2 cm ER/PR- with lymph node involvement. Lumpectomy and axillary 2 weeks ago. Path showed cPR for me too! I'm so, so relieved. Perjeta is a wonder drug (as are T and H). So glad to hear so many others are getting such fantastic results - especially stage 4 sisters!!
Oct 8, 2014 11:14PM Gretta wrote:
Hi Girls, just wondering if anyone has just had perjeta & Herceptin adjuvant. I'm about to finish taxol in 4weeks & in Australia if I want the perjeta I have to pay for it. Been searching the net to see if this combo can work independently of Taxol. Keen for answers to see if I can have it to finish up with my Herceptin. All my chemo has been post surgery.
Thanks
Oct 9, 2014 09:01AM Beatmon wrote:
Gretta, here in the states the perjeta is very expensive...I have a copy of the charge,but my hubby took it to work. I can post it tomorrow for you. Will your herceptin be covered? I am going to be on herceptin and perjeta rest of my life but I am stage 4.
Hopefully, in Austraila the charges are not so inflated as they are here in the states.
Oct 9, 2014 07:26PM Gretta wrote:
Thanks Beatmon,
Sorry to hear you are stage IV. Herceptin is covered but not Perjeta. Do you have to have the taxotere with it as well? Yes, it's around $70.000 for a year. So if I get it can only afford it for a year.
Oct 9, 2014 07:35PM SpecialK wrote:
gretta - when Perjeta is given for early stage breast cancer I believe it is only the 6 infusions that accompany the Taxotere, then Herceptin continues for the year, but Perjeta does not, so you would only need 6 doses every three weeks.
Oct 10, 2014 03:25AM Gretta wrote:
Thanks Special K,
wondering if it only works successfully if given with taxotere. If given just with herceptin yields no benefit.
Oct 10, 2014 09:55PM SpecialK wrote:
gretta - not sure for early stage but here is some info from the Perjeta website:
http://www.perjeta.com/patient/receiving/treatmentplan
Oct 11, 2014 04:38PM Jmo06 wrote:
my mom started this treatment in sept she is having infusions every 3 weeks. Having Zometa every other chemo. Then possible Masectomy, then radiation then targeted drugs every 3 weeks told for rest of her life (hoping not the case) she has had very few side effects.
Oct 14, 2014 11:21AM TJG2 wrote:
I'm 52 and I was DX in March, Stage 4 HER2 positive, mets liver (2 spots). I was given Taxotere, Herceptin, and Perjeta, every three weeks for 6 rounds. I also received the neulasta shot and was one of the few that had extraordinary pain from that. All cancer is gone. I will continue on Herceptin and Perjeta the rest of my life. I will not be having radiation. Originally I thought I was only doing the Herceptin and Perjeta until next March, so this rest of my life thing has thrown me for a huge loop. I just had a double mastectomy and 4 lymph nodes removed. Going through tissue expander "fill ups" now.
Something in one or all of these drugs has caused extreme dryness, making intimacy impossible. Which being a relatively short term thing....just until next March, is a doable deal.....but forever?!?!.....yeah, that's not gonna cut it, I gotta figure out something. Have any of you found anything that works? Does this situation go away?
Oct 15, 2014 11:32PM CoastalXPat wrote:
TJG, sorry to hear about the mets but glad to hear that the THP worked so well. I had a similar problem but I blame the taxotere, not the herceptin and perjeta - In other words, I think there's hope. So I finished chemo & perjeta a few months ago but am still on herceptin as well as tamoxifen. After I finished chemo and tried to go back to life as usual I was surprised to find out my ovaries had about completely shut down (I'm 47) and so did something else. The key thing that helped me was vagifem. Unfortunately it's slightly risky though because I'm ER+ and a little bit of estrogen does enter the blood stream. But I had tried moisturizers and osphena, and they did nothing. But even from day 1 with the vagifem I noticed a difference. It's taken a while for it to work, but now my Honey and I are rediscovering each other. So here's the downside but I have to be honest, part of the reason my MO was ok with the vagifem was because of my early stage, but also because I'm "protected" with the tamoxifen. I don't know your ER status, but if estrogen seems too risky there are other options out there. A number of folks including the mods have provided a bunch of links in this thread:
https://community.breastcancer.org/forum/7/topic/69566?page=109
I wish you all the best -
Oct 16, 2014 05:17PM TJG2 wrote:
Coastalexpat, thanks for the info and a possible light at the end of the tunnel of this subject. I haven't been able to get much info on this subject from my MO, I'm just not asking the right question because he is really great. The information you gave me though will help me be more specific with him. I'm so glad yours was caught earlier! Very encouraging that it probably is not the Herceptin then. I finished chemo in late June, so it sounds like you are a bit ahead of me on the trek! I'm going to check out the link you posted.
Thanks!
Oct 17, 2014 01:59PM tlj030 wrote:
Yes, complete response for me!! Finishing radiation next week!
Oct 19, 2014 10:24PM JennRN wrote:
we are clinically very similar. I just started my first TCHP last Tuesday. 6 cycles, then bilateral mastectomy, then radiation. Reading my body related to side effects, keeping a short journal. How ya feeling?
Oct 20, 2014 06:11AM carolsue63 wrote:
I've always assumed that my new found intimacy problems were due to mostly hormonal issues -- being menopausal now, and taking arimidex to shut down what little estrogen remains. For me, it wasn't just a matter of dryness (though the 1st gynecologist I saw recommended lubrication as a solution). That didn't work. I finally saw a different gynecologist who basically said that I'd "shrunk" so much that I needed surgery to correct the problem. So I had surgery about a month ago, and whether that successfully fixed it or not remains to be seen. I still have some healing to do before we'll know. 
Oct 22, 2014 12:13PM TJG2 wrote:
Hope your healing goes quickly and relatively easy! Are you done with all therapy now or are you staying on Herceptin and Perjeta? I will be on Herceptin and Perjeta forever, they say.
I seem to have several side effects, for these "no" side effect drugs. I'm just trying to take a stab at alleviating them one at a time. I know some may not be side effects but maybe permanent damage from the Taxotere that may be aggravated by my treatments.
Oct 22, 2014 07:32PM Jmo06 wrote:
have any of you heard that antixodiants can damage heart while on chemo?? Heres what happened yesterday
my sister had heard graviola tree juice really good for cancer, I never heard of it so asked onc about it, she said not now after chemo ok, she said now that has antioxidants and that could cause damage to heart while on chemo?????? never heard of this she is usually in a rush and didnt get to follow up with should we avoid all antixodiants or just that graviola tree, I will follow up with dietitian kind of worried about this.
Oct 23, 2014 03:48PM carolsue63 wrote:
TJG2 -- sorry to hear you're still dealing with side effects. I still have side effects with H&P, too, but it's not nearly as bad as with chemo. My first chemo was in 2010, and I continued Herceptin for a year. The only S/E I had with Herceptin was feeling like I was catching a cold every few weeks. I've always had seasonal allergies, so it took me a while to put 2+2 together. (After treatments stopped, so did the "colds". That's when I figured out they were linked.) I think the S/E's from chemo linger for a while, so it's hard to tell what causes what. Seems like it was a good year or so after I'd completed ALL treatments before I started feeling near normal again. My onc hasn't mentioned an end date yet, so I'm assuming I'll be on H&P for as long as my body will tolerate it. The S/E's from Perjeta have been more noticeable to me. Mostly digestive issues (diarrhea and cramping), occasional nausea, and sometimes just feeling run down.
Oct 27, 2014 12:35PM TJG2 wrote:
Carolsue63, I'm just going to try to attack a side effect at a time. I think I have the intimacy issue fixed now. YAY. I'm going to have to figure out the diarrhea and foot pain next, so I can wear shoes and go to work without being three feet from a bathroom. I too have the "cold" thing, also fall allergies so it's hard to figure out what is what. I just keep Puffs with me all the time! I was able to sleep with only two pillows last night instead of sitting up to sleep.....wow was that not nice, getting past that hurdle! I didn't sleep well, but at least I was laying down.I
I think some of my side effects are left over from the taxotere and are somehow aggravated when I get the Herceptin/Perjeta. I think the bone pain is from the Neulasta shots I got.
My husband and I are meeting with onc Thursday to further discuss this Herceptin/Perjeta forever plan. I totally get stopping it completely would greatly shorten my life. What perplexes us though is 6 rounds of full doses killed every thing 100%, even in my liver, so why would it take a full dose to knock out some rogue cell down the road that TRIES to act up? I'm not buying that so much. I think a smaller dose would be able to be taken many more years before my heart or some other organ being affected. (That clearly is the world according to me and either he'll let me know that or he'll look into it through colleagues and researchers he knows). At this point, because this drug combo, which is so successful, is so new, the data is just not there and us gals are kind of blazing a new trail with these Drs.
So on a lighter note....I guess we can spend some time figuring out what hair colors and styles we would like to shoot for in a few months!
Oct 27, 2014 12:50PM TJG2 wrote:
JMO06, I haven't heard that. My onc did recommend red wine though to me and that is supposed to have some antioxidant qualities. He knew I was afraid to do anything though that might rock the boat, so he may have been just trying to get me to relax and get some rest.
There are a lot of factors, individually, regarding the heart. My heart got stronger each test so far. BUT, I've never been a big salter, quit smoking, and beer was cut from my diet. Also, there was only a couple days between treatments that I could tolerate anything sweet or chocolate. I also still did the majority of my house cleaning. So when I felt not so good, it was a work out to dust or vaccum a room, or scrub the kitchen floor. My husband would go to the store with me, but I would push the cart as long as I could....that's a workout. I think an unintentional better diet and keeping my cardio up helped a lot.
One last unsolicited opinion though, the onc should NEVER be in a rush. You may have to wait sometimes because someone else is having a hard time and needs extra questions answered, but that's ok because you may be the ones next time putting the doc behind schedule. The doc works for you and you should always feel like they are the insulating, security blanket of knowledge and care.
Oct 27, 2014 06:29PM Jmo06 wrote:
thanks tjg2 lmk what ur onc says seems like 2 much, i hope not true. Ya my moms onc not my fave for that reason she is always in a rush, but my mom feels comfortable so i try not to pressure her.
Oct 28, 2014 10:05AM TJG2 wrote:
JMO06, will do. Good luck with your Mom's onc. Be firm if you need to slow them down. Tell them first thing, we have some questions that have to be answered, today. He/she probably doesn't even realize they come across as rushing.
Oct 28, 2014 05:19PM Lorlyn wrote:
Carolsue - I too have stage 4 and bone mets. My DX was ER+ PR - and HER 2 1+ I have not been able to stop my tumors from advancing since Jan 2014 DX.
I have been thinking lately why can't I stop this. I called my MO today and requested a retest of my biopsy from Jan. My thinkingis, even though the HER2 was technically, according to industry standards, negative I have read that 1+ and even 2+ be treated as positive DX. My MO has agreed to retest it but I am thinking I still want to change my treatment as a positive for HER 2.
Nothing he has tried so far appears to be working and, as I am an out of the box thinker, I asked him to retest it.
Sounds like you are doing well! I am at Bone Mets Thread right now but searched this board for the Herceptin info.
Test results should be back in about a week according to the nurse. Just in time for my next MO appt.
Everyone have a positive and happy day!
Lorri
Oct 28, 2014 06:30PM Jmo06 wrote:
Thanks TJG2 will try that. I get that feeling there annoyed when we ask questions, i have gotten that you need to trust your at moffitt we are the best at we do. in other words shut up and do whatever we tell you. I had to tell them while we do "trust" moffitt we still like to be involved in the decison process. We met with her nurse practitioner one day and she was even worse, she said i was given my mom anxiety. I really dont know how asking legitimate questions equate to anxiety?? I am the most relaxed, zen person never have never been told im anxious. She left me in shock, we asked for dr and all of sudden mrs nurse practitioner was all smiles. If was up to me my mom would be at another onc, but she is comfortable and doesn't like change so I have to support her decision and just fight for her best care with her current onc
Oct 29, 2014 10:33AM TJG2 wrote:
JMO06, WOW. My Mom's cardiologist was great but his nurse practicioner was off the wall. I had enough and I told her so and then I told the Dr. when we saw her that he needed to get that bitch in line. He asked and we told him our experiences with her. The next 9 years, we never had an issue again, she treated Mom like a princess. Since your Mom won't change drs., good luck!