Newly diagnosed er- pr- her2+ Pros and Cons of neoadjuvent?

marvelher2 · December 2013

Hi everyone, I am newly diagnosed but apparently have extensive disease in the right breast. Primary tumor is 2.6 cm but additional disease extending to 6 cm is seen on MRI with a smaller mass in the lower quadrant. Surgeon is recommending 2 rounds of chemo/herceptin to see how it responds and to shrink the tumor prior to surgery. Anyone with experience in this?

Oncearunneralwaysarunner · December 2013

hi marvelher2

Sorry that you have to find yourself on these boards. I had neo-adjuvant chemo with Herceptin and I'm happy with that decision so far. I had three tumours in my right breast, one that I felt and two that only showed up after an MRI. I also had at least one lymph node involved. It showed up on the ultrasound and was biopsied at the same time as the primary lump. It too came up positive for cancer. When I met with the surgeon he was concerned that a lumpectomy would be more successful if we tried to shrink the tumours and I already had lymph node involvement. Those were the two main reasons for going neo-adjuvant in my case.

I had six chemo treatments, the last two with Herceptin. I continue Herceptin for another 15 or so treatments every three weeks. I had FEC-D as my chemo, first three treatment with the FEC cocktail, the last three with the D (taxotere). I felt and saw noticeable changes in my tumour during chemo. It was shrinking every treatment. I had a pre-op MRI between my 5th and 6th treatment and there was no sign of cancer on the imaging.

I had surgery 9 days ago and was able to have a lumpectomy. While I don't have the pathology report back yet, my surgeon did not see obvious signs of cancer when he performed the surgery. The best case scenario is that the pathology report comes back with no sign of cancer.

I don't know your specifics but it is certainly worth having the discussion with your medical team and explore the various options. It's only when you have all of the info that you can make the best decision for you. The only thing that I wished I had done sooner, before I started chemo, was to have the tumours marked. I had the main one marked after two chemo treatments and by that point the two smaller ones where no longer visible on the ultrasound. Having the tumour marked allows your surgeon to know where the cancer was if chemo does what it is supposed to.

Hope this helps.

oranje_mama · December 2013

Oncearunner, great news about what your surgeon saw (or did not see ). Hope that you get confirming great news from the pathology report.

Marvelher2, I am about to start neoadjuvant chemo a week from today. The main reason for doing so is that there is a new drug (approved Oct 1st in the US) called Perjeta that works in tandem with the Herceptin. You can only get Perjeta with neoadjuvant chemo (not approved for use post-surgery). My tumor is small enough (2cm) and placement such that I could have a lumpectomy now and my surgeon thinks I would have a good cosmetic result. But she agrees with the oncologist that Perjeta may help me and therefore agrees with my choice to do neoadjuvant chemo.

Both my surgeon and oncologist are optimistic that I will achieve PCR (pathologic complete recovery) and that surgery will therefore consist of removing the tumor marker (and a very minor amount of surrounding tissue for biopsy) and a sentinel node biopsy.

I have a lot of confidence in my doctors and this course of treatment.

Good luck to you.

marvelher2 · December 2013

Once runner, thank you for the information on Perjeta. I will ask my surgical oncologist and eventually oncologist when I have one about this treatment. My surgeon likes using TCH for the cancer type that I have which is E- P- Her2+. I will research and definitely ask hi, about the benefits of Perjeta. Do you know why they only use it for neoadjuvent therapy?

marvelher2 · December 2013

sorry, I got mixed up, that reply was for oranje_mamma

marvelher2 · December 2013

Wow, that is really encouraging Once Runner! I was pretty disheartened to see from the MRI that the tumor really spanned 6 cm, then another tumor on the opposite side of my breast. Thought for sure mastectomy was going to be my only choice, and it still may be, but this is worth a try. I also like the idea of knowing if the chemo is successful in treating the tumor as I wonder how you can be sure when you have no measurable change to rely on.

My doctor has ordered a PET and PEM scan prior to treatment which I have this Wednesday. The PET is the nail biter as I am anxious about some spinal pain I've been experiencing. I had a lumbar/sacral MRI a few weeks ago as that is what I originally went to the doctor for. The mammogram was an afterthought as I was asked when my last mammogram was and guiltily I admitted it had been three years. ****sigh***. Never thought I would ever catch myself wishing they would hurry up and start chemo though. I really want to get something going to fight this thing. I'm ready for it!!

I think the PEM scan is to create the markers you talk about as he seems very interested in carefully monitoring the tumor sizes after each chemo treatment.

Now, instead of beating myself up about not doing the mammograms, I'm nagging others to be smarter about their healthcare than I was....

Jelson · December 2013

marvelher2-

There is a huge international conference going on/just ended? in San Antonio where many new clinical study findings are being discussed - several for HER2 Positive BC. There is s a BCO thread on the conference with many links, some specifically discussing different neoadjuvant therapies for HER2 Positive BC. Here is the BCO thread link:

http://community.breastcancer.org/topic_post?forum_id=73&id=813995&page=1

marvelher2 · December 2013

Hi kayb, I am being referred to a medical oncologist. But awaiting the PET and PEM scans. I think he thought those would go a lot faster, but the imaging places are booked solid due to the year-end and holidays. I would just as soon start tomorrow as waiting is really getting to me right now. Who would dreamted that I'd be anxious to do chemo right before Christmas... I do those tests on Wednesday, then meet with him tomorrow when I'll be referred to the oncologist that he works with for treatment. Meanwhile my goal is to educate myself as much as possible to make sure I am receiving the best treatment.

marvelher2 · December 2013

oh, I should have said two rounds then check for tumor change. He was not saying that only two rounds would be given.

Jelson · December 2013

there is a podcast by bco on this topic from the conference at

http://www.breastcancer.org/community/podcasts/sabcs-20131211

marvelher2 · December 2013

PET scan was clear for mets, one more biopsy, then scheduling port placement for chemo. I will be getting Perjeta and herceptin along with another chemo drug I think taxitol??? Hoping to shrink the tumor enough to do lumpectomy.

Oncearunneralwaysarunner · December 2013

Great news about the PET scan results!

It's a great motivator to see tumour shrinkage while doing chemo, it gives you an indication that the drugs are having effect. I finally got my pathology results and had a complete pathological response to chemo, no signs of cancer in what they took out!

You may want to consider getting some Emla cream for your port. It numbs the skin before going for treatment so you don't feel the needle going in. It's available over the counter in Canada and you don't need a prescription for it here, not sure if it's the same case in the states. It was a little pricy but so well worth it. Then again I'm a wimp with needles.

marvelher2 · December 2013

thanks, I will definitely ask for the EMLA cream!

marvelher2 · January 2014

Starting chemo tomorrow with taxatere, Carboplaten, Herceptin and Perjeta. Port feels much better, and have the EMLA cream on hand. Thanks for everyone's help!

marvelher2 · January 2014

Thank you so much for the tips! Every bit helps. Today was a whopping seven hours of chemo. Was supposed to be five, but I was running late anyway since I'm getting four meds as well as the blood draw and the steroids and anti-nausea meds. Got a slight reaction to the Carboplatin at the end, nothing much, just a little throat tickle and slight dry cough that wasn't giving in, and only after the Carboplatin started, so the nurses halted the drip and gave me another dose of steroids and pepcid before they would start the drip again. Got in at 10:00 a.m. and left at 5:00 p.m., but everything else went well and I'm feeling ok tonight. Nurses told me I probably won't be tired tonight due to the steroid loading.

Asb · January 2014

I had my first round last Thursday and it was a long day. The first few days with the steroids were not bad just jittery and foggy. Monday I had a little bit so nausea but have learned to treat it like morning sickness and eat a little bit before I get up. Each day I have a few more side effects, but so far all manageable. I go for round 2 tomorrow which will be perjeta and herceptin, are you getting nuelasta shots to boost the bone marrow?

soriya123 · January 2014

have you read this article:

17 hours ago Moderators wrote:

Pathologic Complete Response to Targeted Therapy Treatment Before Surgery Linked to Better Outcomes for HER2-Positive, Early-Stage Disease
January 15, 2014
The latest results from an on-going study suggest that pathologic complete response after Herceptin and Tykerb given before surgery to treat early-stage, HER2-positive, hormone-receptor-negative breast cancer is linked to better outcomes. Read more…

marvelher2 · January 2014

This is encouraging. I'm not receiving Tykerb, but I am receiving Herceptin, Perjeta, Taxotere and Carboplaten all at once. Whew! Hoping the combo will seek and destroy and I'll end up pCR and able to do a lumpectomy instead of mastectomy. My Oncologist says he's seeing fantastic results with the H/P combo in other neoadjuvent patients he's treating. I'm to go through two rounds, then see my surgeon to see if it is working. If not, he'll do mastectomy and I'll complete the chemo after, but I'm very hopeful at this stage.

I'm three days out from my first round. Feeling a little nausea but took a pill and feel a little better now. Most noticeable SE has been facial puffiness and eye strain and a little bit of headache, but probably because I got an extra dose of steroids due to a slight reaction I had with my Carboplaten treatment.

marvelher2 · January 2014

Asb, yes, had Neulasta shot yesterday. Did fine with that, so hopefully it will help. My white blood cells were slightly elevated before chemo, I understand from the steroids. My red blood cells are under the normal range though, probably why I had so much trouble with bleeding from the Port surgery and with my biopsy, and I'm thinking it might be why I've been so fatigued even before the chemo. I think I'm slightly anemic. They didn't say anything about it, but I will ask them if I should be concerned about that next appointment. I have a blood draw next Tuesday.

marvelher2 · January 2014

BTW, I don't know if any of you have PPO's where you pay a copayment up to a yearly cap like I do. I pay out of pocket up to $3500 per year. Yesterday, I was able to find out that I could get coverage for 80% of the copay for both Herceptin and Perjeta, up to $9,000 for each drug, and I 100% of the Neulasta copay for the first injection, then pay only $25 for subsequent injections up to $5,000. If you have a combined income under $100,000 per year they pay even more for the Herceptin/Perjeta. With my cap I won't take full advantage of the totals, but I figure might as well take something back from the drug companies since these drugs are so expensive. It was really easy, done online on the Genentech and Amgen websites. The Taxotere and Carboplaten offered financial benefits, but not in my income range.

Kland · January 2014

hi Marvel,

I am new here. Just discovered this site. I am triple positive but was glad to read the comments here. I had 2 tumors in the right breast but after the MRI they were lumped together as one making it 4.8cm. There appears to be no node involvement. I am doing chemo first with the targeted therapies, H and P. It has been a rough beginning. 1st chemo I reacted to the herceptin. Back ache progressed to leg aches, major chills and had to go on oxygen. After additional steroids I was able to finish. Day after had the N shot but also went to ER with chest pains. Day 3 major sinus and chest infection started...day 4 hospitalized for 3 days with H1N1 and pneumonia. Before I realized I had the influenza I though I was done.... If this was chemo I would never make it. Recovered and went in for 2nd chemo on the 9th and had no reaction. Best of all the dr saw me just before we started it and his exam revealed no palpable tumor. I think he was rather surprised. I sure was. He believes I will have no sign of cancer by the time I have surgery. This is quite the journey. Thank you all for your posts.

marvelher2 · January 2014

wow, Kland, what a roller coaster! I had a slight reaction to the Carboplatin, but had no issue with H and P. But wow, this is so encouraging! Fantastic that you would have such a positive response!!

I have to say that yesterday and the day before they might have had to stick a gun to my head to get me to do it again, but today is a lot better, and encouraging news like yours goes a long way to help my courage to keep going. I got hit with extreme fatigue nausea and bone pain the last couple of days, but feeling nearly human today. Please keep in touch with your progress.

Asb · January 2014

I was surprised at how fast the tumor changes as well. I saw my onc 4 days after my first round and he said he could definitely feel the tumor flattening out.

I haven't had much nausea but had one day of severe bone/joint aches from the nuelasta. I got thrush and a UTI and even though my blood counts were good my hemoglobin and platelets were low so I have to have a blood transfusion tomorrow. I also have had insomnia. I feel like every day it is a new SE.

Asb · January 2014

marvelher2

How many rounds are you doing? It sounds like we have the same treatments. Are you going to finish chemo before surgery?

marvelher2 · January 2014

Hi ASB, I am supposed to receive six rounds. I don't know yet if I will finish chemo before surgery, it depends on how well the tumor responds. I am a little worried because my surg onc called me for an appointment next Thursday when I wasn't supposed to see him till after round two. There was a 4mm finding on my MRI that did not show up on PET or PEM. Unfortunately it's on the total opposite side of my breast. Surgeon being very careful ordered an MRI guided biopsy which I had a week ago Friday, and it did show up again. Wouldn't they just call me if it were B9? I'm thinking it's probably DCIS which doesn't light on PET, so I'm concerned he wants to change course to mastectomy. I've resigned myself to that possibility, but I'm afraid I would not get the Perjetta if they stopped the chemo right now. I've been reading several really promising posts from people who are getting pCR with this treatment, and my onc has similar accounts from a couple of his own patients. Like all of us I'm sure, if I have to go through chemo, I want the best possible chance for a cure.

On the subject of SE's, if you asked me yesterday if I could do another round I think I would have preferred a shot to the head. Very terrible bone pain, fatigue, headache and nausea. Today is completely different though, except for a bad case of diarrhea, I feel almost human. Hang in there, I'm so glad we all have each other because until one has experienced it, they can't possibly understand. I know I've barely scratched the surface of what so many have experienced here, and know there is more to come.

Asb · January 2014

I know waiting for results can be maddening and it's hard not to read into it, but stay positive until you know for sure. I am opting for a double mastectomy after I am done with the chemo. My mother and a 1st cousin died of breast cancer and I have had very cysty breasts for years. I am just done with them, I want them gone and want new ones. Even if you have to go with a mastectomy, could you not finish your 6 rounds and have surgery afterward? They initially planned to do my surgery first but after the MRI decided the tumor was too close to the chest wall and they were worried they would not get clean margins. They are hoping to shrink it before surgery. I am a little worried, it seems everyone else has had a PET, but I have not had one yet.

I have only had one really bad day so far, but unfortunately it was my first day back to work and I could not stay, made me feel a little defeated. I am hoping that since I am doing TCH one week and the perjeta with the herceptin the next that maybe the SE will not be as bad. I really hate the foggy feeling though.

When is your next round? I hope all goes well Thursday, let me know what you find out.

marvelher2 · January 2014

I would guess they'll give you a pet after all this is done. Part of the reason he did PET is to try to see the second lesion seen on MRI, and he. May not have had to biopsy it if it had., or he would have recommended a mastectomy at that point. But since it didn't he ordered the MRI biopsy. The other thing with me is that I was having some spinal pain and I think he was worried about bone mets, so that ruled that out lucky for me. It sounds like the Perjeta is giving you a better possible outcome.

I don't know if because my first round was so dose intensive, but I've had a lot of side effects after just my first round. I am amazed that you are able to work during this....

marvelher2 · January 2014

oh, forgot to say my next round is Feb. 5th.

marvelher2 · January 2014

kayb, I hope so! Was a rough few days. Feeling a lot better today...

Asb · January 2014

marvel

Are you getting the herceptin weekly or every 3 weeks? I am doing the carboplatin, taxotere, and perjeta every 3 weeks but the herceptin weekly. I have felt pretty good this week, I even made it to the gym. I did manage to get thrush and a UTI and after my first round my hemoglobin dropped to 7.7 so I had to get a blood transfusion, but overall I have felt good. The most annoying SE is the constant runny nose with the herceptin. Good luck tomorrow with your appt. tomorrow sending positive energy your way.

Here's to hoping the first round is the worst!

marvelher2 · January 2014

Asb, No, right now I'm getting all four at once, every three weeks. Is the runny nose from the Herceptin? Thought it was the Taxotere. My hemoglobin is flagged, but apparently not low enough for anyone to be alarmed. I had bloodwork yesterday and my white cells were 18.2! Actually, the nurse had predicted it would be about that because of the Neulasta shot, but I think that's why my bone pain was so bad.

I deal with polycystic kidney and liver disease on top of the cancer. While I've been fortunate for a PKD patient in that my liver and kidney function have remained normal, my liver extends to my hip and has too many cysts to count, and basically looks like bubble wrap. The left lobe is completely taken over by cysts, and the right lobe does not have enough viable liver to resect. Yet it still works perfectly. I am already always uncomfortable from having a 20 lb liver because it pushes under my rib cage and displaces other organs, so I think the chemo on top of it is compounded by the stress from the PKD.

I had two appointments yesterday, one for the shot I get for the liver at my primary and a blood draw at the Onc. Both nurses told me I should utilize my Norco prescription as needed to make sure I stay on top of the pain, so I'm going to be a little less worried about doing that. I have been taking 2-3 Norco per day for several years to combat the nagging pain I have from the liver cysts which has made it tolerable to continue working, but I'm always very careful not to increase the numbers that I take so as not to become dependent. The reason I take Norco is that it has less Tylenol than Vicodin, and taking NSAIDS continually with PKD can put my already stressed kidneys over the edge.

Newly diagnosed er- pr- her2+ Pros and Cons of neoadjuvent?

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