ER-, PR-, Her2+ Roll call
Comments
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Oomawerd --sorry that it has been such a long complicated road for you --that said, am glad your nodes are negative nd your tumor was less than 1 cm. You will have a very good long term prognosis --just read this thread .
Oncologists around the country now give 12 weeks of taxol with herceptin for her 2 tumors less than 1 cm -it has become the standard of care around the country for small her 2 tumors . This is a regimen with less chemo than the TCH and is well tolerated
Here is the link to the article http://www.nejm.org/doi/full/10.1056/NEJMoa1406281#t=article
You could discuss this regimen with your doctor? Many ladies on this board have had this regimen.
Wishing you all the best
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Ooma - Sorry for all your troubles. Yes, it is true that Herceptin is given along with Taxotere or Taxol for the first 6 infusions - afterwards alone for the rest of a year. Personally my MO said he would not let his Mother skip chemo if she was HER2+ and ER/PR-. He did not even think I should postpone 3 months to take a planned cruise to Alaska. My MO was doc of the year several times in the Houston Med Center and a true sweetheart. Chemo certainly wasn't pleasant, but you can get through it.
Did they do an Oncotype test? I know that is a predictor of who would best benefit from chemo. Also I assume they are taking your age into consideration.
It's a difficult decision. My first & second & third thoughts are - get a second opinion. Hopefully you have copies of all your scans & tests & reports (which you should start rounding up if you don't.) Go up to Ft. Worth or Dallas or go down to Austin. It's worth a day trip for your peace of mind.
BTW - stay away from 'dr google'. Lots of that information is old or just plain incorrect. Do you research on trusted sites like this one or Mayo Clinic.
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Welcome Oomawerd to the club noone wants to belong to. Your diagnosis looks a lot like mine, and naturally you are concerned about the side effects of treatment. Have you asked your oncologist why you cant gave 12 weekly taxols with herceptin followed by herceptin every three weeks to completion of a year? It has become the standard treatment for early stage HER2 breast cancer for many oncologists and I found it to be quite doable.
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Hey, guys! I just wanted to pop in for all you newbies that are going crazy right now and tell you all to take a deep breath.
As you can see from my signature, I was diagnosed almost 11 years ago. I had bilateral mastectomies, 4 AC and a year of herceptin and I am in great shape now.
Remember, because ER/PR- , HER2+ breast cancer is fast growing, it means that chemo is very effective as chemo only works on dividing cells. And Herceptin (Perjeta) is a game changer for all.
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My Czech partner (59, post-memo pause, no history of breast cancer in the family) on her regular mammal checking showed an extensive area of micro-calcifications and on further checking they did a biopsy and diagnosed DCIS G2, growth index Ki67/MIB1 10%, ER- PR-. Her2 was not checked. In effect: stage 0 cancer. That onco-team urged immediate unilateral MX "because if she waited she would be dead within a few months. Immediate reconstruction was out, we had to wait at least two year to see if the cancer came back" (Their words, they are extremely bad in doctor-patient relations here).
As biologist, I started checking and we ended up with a second opinion at the Anthony van Leeuwen Hospital in the Netherlands. They did a very thorough re-examination, but came to a similar Dx: the area was too widespread for a lumpectomy. However, they mentioned that, unless pathology from the surgery prevented that, back to back reconstruction definitely was an option.
Since the insurance does not pay for treatment abroad in this case, we went back to the original team and the mastectomy was performed early April. What nobody had warned my partner for is the strong seroma she got.
After three weeks, the lab results on the removed tissue came back. Clean margins of at least 15 mm, four clean SN nodes but also two separate micro-invasions, each max 1 mm, ER-, PR-, HER2 +++ and growth index MIB1 of 60% wel within the already recognized DCIS area. No angio-invasion (that is, both microinvasions were not close to any blood or lymph vessel).
Based on that, the team told us this cancer is extremely aggressive, and she would need one cycle of 4x AC, than once cycle of T. They are checking if Herceptin is indicated for such cases.
We were rather shocked that, with free nodes and no angio-invasion and such small micro-invasions, they see it necessary too go full tilt on the chemo but are not sure if Herceptin should be used or not. (my feeling is that they are not really 100% up to date or are always playing it safe and super conservative). We called with a cancer center here, but they mentioned that in the Czech Republic, Herceptin is only prescribed together with chemo, and paying for it privately is prohibiting expensive.
Does this sound like a normal treatment for this?
My partner has preliminary agreed to go ahead because for her the stress factor of recurrence would be very big. We are only scared that after assuring us that MX would be the end of treatment, they now want Chemo with all kinds of possible side effects etc, who knows what they will say after the chemo is over or what side-effects she will suffer from.
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Yes, Herceptin is a game changer for HER2+. And yes, it is only given with Taxotere or Taxol to start, and then continued for the rest of a year. I think it makes sense.
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hi all,
The port removal is an interesting conversation. I will finish weekly taxol and herceptin may 23. Then 9 weeks of radiation. Herceptin every 21 days till March 2018. I plan to have my port removed asap after that barring no complications. I want to get back to "normal " as soon as I can. If I'm unfortunate enough to warrant another port I will deal with it at that time. The herceptin has been the best weapon against hers2+. I feel fortunate that it is now available to us. Good luck to all and you must make the decision that makes you the most comfortable.
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Hello Slavab. You'll find discussions about the dose dense Taxol/Herceptin treatment in this and other HER2 threads. It is a milder regimen than the TCH one and is becoming the standard for early stage HER 2, which otherwise has a significantly higher recurrence rate than early stage luminals. I tolerated it well and have had no lasting side effects and would recommend it to anyone in your wife's situation. It was first administered during the APT trial at the Dana Farber Institute and 98% of those who received it were recurrence free after 4 years.
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Hi slavab -Oncologists around the country now give 12 weeks of taxol with herceptin for her 2 tumors less than 1 cm -it has become the standard of care around the country for small her 2 tumors . This is a regimen with less chemo than the TCH and is well tolerated
Here is the link to the article http://www.nejm.org/doi/full/10.1056/NEJMoa1406281#t=article
You could discuss this regimen with your doctor? Many ladies on this board have had this regimen.
Wishing you all the best
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To avoid double posting and get more discussion on this point, I will continue all replies in the topic thread: Micro-invasive DCIS that is her2 +++ on this forum, page 15 somewhere close to the bottom (cannot post links yet)
Anyway, they started today with the AC cycle, we will see how my wife reacts.
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slavab --wishing you and your wife all the best! She is lucky to have a strong advocate like you in her corner and I am sure together the two of you together will do very well
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Thanks, she is definitely strong as well, but sometimes she decides that she wants to have quiet and takes a certain route. The hardest thing then is to shut up and support that, no matter what comes. To be honest, I would never have gone back to that original team, but for several understandable reasons, she decided to do so, so that's it.
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that is wonderful! I was diagnosed er/pr neg her2+ and i too had a PCR after surgery... your are proof that the stats are favorable!
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Hi all...reading through all of the recent posts brings back "everything". The fear, the questions, the surgeries, the chemo...sigh...BUT I want you all to know that there is hope. I am just like all of you (see bio) and I made it!!!! I am nearly 4 years out from diagnosis. 🤗🤗🤗🤗. Yes I am forever changed but doing well and thankful for each day. Wishing you all the best
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Thank you Girlstrong for coming back. Posts like yours light up my day.
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Hi everyone,
My last post was May 13, two days before my first chemo. Since then, a lot has happened. Usually I make pretty long and detailed posts, but I've already typed this on a few other threads, so it's getting shorter every time.
Infusion 5/15/17 went better than i expected. Neulasta self-injected as intended the next day. Side effects were mild at first, then the fiery diarrhea came on day 4. OMG! Got that under control with OTC meds. Feeling pretty good for a few days when I noticed a rash under my left breast. Saw a doctor. It's shingles. Got antivirals. Things were looking pretty good again for a few more days.
Then I started having ear aches, sore throat, and severe tooth pain on the right side for several days. Finally decided the pains weren't going away on their own, so I called my dentist and docs, trying to decide what to do, when I had to pee. Oh no: PAIN!!! Not good at all. So, I have an appointment with my PCP this afternoon. The cancer center said i should come in for my next chemo session on Monday as scheduled, whether I'm on antibiotics or not.
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Yikes! That's quite a bit to deal with after just one treatment. I'm hoping your docs can get it all under control sooner rather than later. So sorry that you are experiencing side effects so early on in your treatment.
xoxoxo
~Dee
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Hi everyone,
This is my first post on this forum.
I was diagnosed in September 2015, Her2+ er- pr- , stage IIb breast cancer in my left breast. I did treatments of herceptin and perjeta from October thru May and they reduced the tumor from 5.5cm to small enough for a lumpectomy. We did not get clear margins and began to use tdm1 / kadcyla to get rid of the residual cancer. By October 2016 I had a clear pet scan. Stayed on kadcyla thru March 2017 to reduce chance of recurrence. Then started on herceptin. Unfortunately, I found a lump in the same area a few weeks ago. MRI revealed another 5+cm mass. No lymph node involvement. The oncologist recommended getting a mastectomy right away. Second opinions have recommended having chemo before the surgery.
Currently I'm waiting for a pet scan to be scheduled to make sure there is not disease in other parts of the body. I began taking artemisinin, Graviola, cbd oil, and pau d'arco, to hopefully reduce spreading while I'm waiting for surgery to be happen. Got back on a rigorous anti cancer diet.
I'm wondering whether to do chemo before the surgery or not. I would love to hear from any of you her2+ er-pr- sisters who did surgery and not chemo. What was your outcome?
Thanks for sharing your experiences.
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Sept 2015: diagnosed with stage 2b breast cancer. 5.5cm tumor in left breast
Oct 2015: began neoadjuvant infusions of herceptin and perjeta. Reduced tumor.
May 2016: lumpectomy. Didn't get clear margins.
June 2016: began Kadcyla TDM-1.
October 2016: clear PET scan
Oct 2016-Mar 2017: continued on Kadcyla
March 2017: began Herceptin only.
May 2017: found new lump. MRI shows multi-focal 5+cm, no lymph nodes involved.0 -
Vicki your treatment certainly is not standard of care. After a lumpectomy without clear margins, more surgery would be required, once clear you should have had radiation. Giving H&P without taxotere is unheard of. Treating you with TDM1 instead if surgery and radiation is crazy (just allows these cancer cells to mutate and become resistant to TDM1 now). Not surprising that you had a local reoccurrence! Having chemotherapy before surgery would be the best - go after stray cells ASAP and asses tumour response to the chemotherapy choice, then surgery. You can still have a lumpectomy IF you choose radiation to the remaining breast (of course cosmetically, total mastectomy with immediate reconstruction might look the best)
I think it will be hard to find any of us aggressive HER2+ individuals that did not have chemotherapy. Even older ERPR neg woman because they can't have endocrine therapy.
Start your holistic stuff too but once a breast cell becomes cancerous, that DNA needs to be stopped in its tracts
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Vicki L, Sorry about your situation. I'm afraid it's way above my "pay grade" where knowledge is concerned. I'm new to BC.
Just want to say I'm a BIG fan of CBD oil. I'm in NC, so I can only get the hemp variety, not the medical MJ. But I'm convinced it is helping with my side effects. I got shingles shortly after my first chemo, and it's the least bothersome case i've ever heard about. (It's a virus that travels along a nerve, causing inflammation, and causing what is normally a nasty, painful itchy, blistering scabby rash that lasts for weeks.) My rash is small, went from blister to healing before i even realized I had a rash. Doc put me on anti-virals, but I don't think that cures the rash, it is supposed to help minimize permanent nerve damage. Ive been using CBD oil topically, and this thing hardly even itches or hurts. Yay neuroprotectant qualities of CBD!
I'm using the CBD for MANY other symptoms of my chronic illnesses, and it just so happens I got diagnosed with BC about 3 months after starting the CBD. I want to avoid any more neurological damage than i already have, and now I know how much CBD oil can help with cancer treatment and symptoms. Just awhile ago, I was having obnoxious nerve stabbings in one thigh (had my 2nd dose of chemo yesterday), and I took a big dropper full of CBD, and the stabbing went away. COOL!!
Take care of yourself, and I hope you get some answers from other members.
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Vicki - you didn't post your profile so we don't know your original diagnosis & subsequent treatment. Are you now Stage IV? how is your decision process going? I do hope you will get a second opinion.
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Hi Everyone,
Has anyone had any experience with ascites? My newest side effect from chemo #2. I look like I swallowed a giant, semi-filled water balloon. It's kind of freaking me out, and I need to call the cancer center. I know I should do it tonight, but I'm afraid they'll tell me to go to the ER. It's 10pm, my evening meds will kick in in about half an hour, and my hair is dirty. I don't wanna go! I haven't done enuf research, but i think maybe a diuretic will do. But it could be a sign of liver or heart problems, or some kind of screwy protein problem. I don't know. It just sucks. Didn't I go through enuf side effects from the first chemo? Sigh.
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Thanks, everyone, for your replies.
MinusTwo: I could not figure out how to add my diagnosis and treatment to the footer, so I edited my post to include the info. It looks like I'm stage IIb again.
I stayed away from chemo because I own a bead store, and thought that the 10% chance of severe peripheral neuropathy that came with the chemo would be intolerable. I'm considering it at this point, but maybe getting a mastectomy would allow me to avoid it. I really would like to get my onc or a new onc to give me Herceptin & Perjeta only again as neo-adjuvant treatment, instead of chemo. That combination worked great for me before. I'll be going for a pet scan friday to make sure there isn't disease beyond the breast.
The current plan is to get a biopsy, to make sure the cancer hasn't changed the receptor status; then we'll have info to decide whether to do neo-adjuvant treatment, and what kind.
The last time I had a biopsy it was horribly painful. I hope the new surgeon will be able to do it without so much pain. After the last one, I thought that if I ever did it again I would be asked to be put out for it.
Today my partner and I went to meet with a plastic surgeon to learn about reconstruction options. The before and after images that he showed us were rather dreadful. Made me want to find another option other than mastectomy!
NCBeachGirl: I'm sorry to hear about the ascites. I hope you get someone to look at that soon. Don't worry about how your hair looks.
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Sept 2015: diagnosed with stage 2b breast cancer. 5.5cm tumor in left breast
Oct 2015: began neoadjuvant infusions of herceptin and perjeta. Reduced tumor.
May 2016: lumpectomy. Didn't get clear margins.
June 2016: began Kadcyla TDM-1.
October 2016: clear PET scan
Oct 2016-Mar 2017: continued on Kadcyla
March 2017: began Herceptin only.
May 2017: found new lump. MRI shows multi-focal 5+cm, no lymph nodes involved.0 -
Vicki - are you in the US? Normally herceptin &/or perjeta are not given without taxotere or taxol for a "jump start". Also I believe it is unusual to have a lumpectomy without radiation. And unusual not to do more surgery if they didn't get clear margins.
I do think it would be a good idea to see another breast surgeon for a second opinion. And while you're meeting more docs, I'm sorry your experience with the PS was so negative. I'm very pleased with my reconstruction after BMX. You may want to consult a different PS also.
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hi / hope someone can help - are there any long term survivors with lymphovascular invasion ??? My lump was just under 2cm - and I'm just about to start tax and Herceptin / so worried
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Hi Lilneez. 2cm is not huge but I'm not sure what you mean by lymphovascular invasion. Is that IDC? If you post your diagnostic info it will help people in the forum advise you. As chemo regimens go, Taxol and Herceptin is a relatively mild one, and despite a bout of foliculitis and problems with my port, I found it quite doable. I do recommend cryomits and booties for the hands and feet. It's unpleasant, but it worked for me. I didn't have any of the neuropathy that is often caused by taxanes. Hang in there and take extra good care of yourself. It will be over before you know it.
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Lilneenz, I'm guessing you're stage 1 and that your prognosis is good. Check out the articles on the APT Dana Farber trial that paved the way for the Taxol Herceptin regimen we received.
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hi pipador
I think I've added my diagnosis - UBS already had 3 x fec and due to start doXytaxol/taxotere abd Herceptin on Monday - I'm classed as stage 1 but so worried about lymphovascular invasion which means there's evidence the cancer has broken into lymph/blood capillaries - but node negative - just so scared it's spread ... I had a clear bone and ct scan just before chemo though
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lilneenz --you have node negative, stage 1a her 2 positive disease and this should have a great prognosis, nevertheless of course its hard not to worry about the features of the pathology report. Most folks are getting only taxol and herpcetin for this stage of disease .
It's completely Normal to be worried , nervous --just remember that herceptin is a wonderful drug! In the original phase 1 trial in the 1990s --one of the ladies had stage IV disease with cancer spread to the lungs and neck --she is still alive 25 years later cancer free! Many stage III and stage IV ladies are dping great on herceptin --so a stage I patient should definitely draw inspiration from all the survivor stories on this board as well as knowing that many women with higher stages also do great. Hope this helps .
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