ER-, PR-, Her2+ Roll call
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Henrietta There is a Herceptin and Perjeta thread in the stage iv forum. I tried to send a link: Forum: Stage IV and Metastatic Breast Cancer ONLY → Topic: HERCEPTIN and/or PERJETA I obviously don't know how and it doesn't work though
You will get a lot of support and hope here. When you are stage 4 you tend to put up with a few side effects because you can live with side effects but not with metastatic cancer. Honestly, there really is some itchiness, runny nose which I am living with very well! I just came back from a river cruise which was amazing - just scheduled it in-between treatments. Chemo will be behind you quickly - seems like forever - immunotherapy will keep you in remission as you get "top ups" every three weeks. They are studying vaccinations and subcutaneous injection - new treatments are always coming down the way. Some long term users have stopped H&P after 10 years of clean scans. I hope that we both get to make decision one day too!
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Hi Sally. Ten minutes before the Taxol infusion until 10 minutes after it, I wore cryomits and cryobooties. I would get them swapped for cold ones fresh from the freezer after 25-30 minutes. This basically slows the flow of blood (and the Taxol or Taxotere) to your extremities. Cryocaps work the same way. It was uncomfortable and even a little painful at times and it prevented me from sleeping during infusion but it was worth it. In my cohort, I was the only one doing this and the only one who completed treatment without neuropathy. The hospital where I was treated supplies them. They can also be purchased online.
Since the interaction between taxanes and sunlight can also cause your nails to detach from the nailbed, I also used clear Sally Hansen nail polish with sunscreen under a coat of metallic nail polish (I find it lasts a little longer). During the Herceptin-only months, my nails became very brittle, so I just kept them short and used heavy hand cream at night.
Hope this helps. Pampering your hands and feet is something easy you can do to take care of yourself during and after treatment.
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bstein, thanks again for your encouragement! I’m feeling better about the post-chemo herceptin and perjeta, maybe partly because I now understand how happy I’ll be to be off Taxol. In addition, I have an opportunity to go to Taiwan this summer and when I asked my MO about it she immediately said it would be no problem and I’ll obviously be able to go. So thanks so much for sharing. :
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Hi bellasmomtoo. We have so much in common I wanted to say hello. I will be done with herceptin December 12. I also developed a blood clot from my port and was put on the blood thinner shot. How are you doing with everything? Warm wishe
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Hi Lovemyburbabies! We do have a lot in common! I heard that blood clots from ports are pretty rare -- my BS said that in all the years she has been installing ports (over 15 years) I'm her 3rd patient to get a blood clot.
How are you doing on the blood thinner shot? I hated those shots -- after two weeks I begged my vascular surgeon to put me on pills so he switched me to Eliquis. I had my last Herceptin yesterday and am scheduled to have my port removed in 3 weeks. After my port is removed I can stop the Eliquis, but have to start taking a baby aspirin everyday. (I don't have a history or family history of blood clots, but my VS is being cautious.)
I still get a little itchy, I think from the Herceptin. It feels strange to have finished treatment. I can't get too excited cause I don't want to jinx myself.
How are you doing overall?
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Any ladies here have 1% positive for hormones? I am considered negative but ME still put me on Tamoxifen. Anyone else
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Hi ladies! Today is my second round of TCHP. My mass has already shrunk quite a bit from where we started, so I know the treatment is working. Once I finish 6 rounds, I am scheduled for BMX, followed by radiation.
How many of you have had long-term success with no re-occurrence? Other than being fearful of LE (my mom has terrible LE from her bouts with BC, and it scares me to pieces), a metastasis is my biggest fear.
Give me some hope! Today my emotions are all over the place. Thanks so much!
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Hi! Bellasmomtoo! Sorry Ihad a tough time remembering my password so that I could reply. I'm ok overall. I'm having targeted therapy today then only two more to go. I also want this port out ASAP. I've always had the feeling of wanting it out. I'm trying not to freak myself out about the blood clot stuff. I'm doing the shots until they take the port out. The shots can be quite painful. So you will have your port out in less than two weeks!!?? Let me know how everything goes. I will be thinking of you
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Mumzy,
I was less than 5% on my initial biopsy for both ER and PR and they were still calling it negative. I was 0% for both on my surgical biopsy. I am not doing tamoxifen. All this makes me worry. How do numbers just change like that and how do they determine the best course of treatment. I’m supposed to talk with my MO tomorrow. I think I’ll ask her about it.
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Hi Lovemyfurbabies, My port was removed yesterday. My BS removed it in her office. Only took about 20 minutes. My vascular surgeon wanted me to continue with Eliquis, but he agreed that I can switch to baby aspirin once my port was removed. (He was concerned that I may be prone to blood clots, so baby aspirin was a compromise.)
My MO authorized a bone scan cause I have occasional pains. I scheduled it for next month. I didn't want to have it before Thanksgiving in case I get bad news. (I'm hosting Thanksgiving dinner for my relatives.) So although my port is out and I am done with treatment, I don't really feel done because of the pending scan.
How are you doing? I agree that the shots are painful. I admire you for sticking with it. (no pun intended!)
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I am in!
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Just popping in with my first post. Just got the results of my pathology report yesterday. Next stop...surgeon. All I can say so far is IDC, right, 2.6cm, Grade 2-3. ER-/PR-, HER2+ (3+). My most current concern/question is that the words of my primary care doctor differ than those on the pathology report. I'm leaning toward focusing on the path report and holding out for more info when I meet with the surgeon. Of course, I've been researching like crazy since my mammogram...well, actually since I felt the lump. Anyway, at this point I really don't know what to expect in terms of treatment, so I really appreciate reading everyone's story. Thanks to all who have shared.
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Welcome mjb. This is a great place to get information and ask questions. Tumors similar to yours are often treated with chemo first to shrink it so that a lumpectomy will be possible, followed by radiation. Unfortunately, anti-hormonal drugs will not be helpful to you. There have been many advances in treatment for Her2+
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Thank you so much, Bootscootin! Yes, I've read about chemo first and kind of wondered about that...Since I'm seeing a surgeon first, I suspect she'll examine me and make the determination for surgery or chemo first or refer me to an oncologist? After my appointment with my regular Dr. yesterday, I just assumed I'd have surgery first...So many unanswered questions. I know it takes time. What do you think about the fact that my path report says IDC...and Ductal Carcinoma in situ says, "not identified". The Dr. who presented the path report just said "ductal carcinoma", and went on to say it is slow growing and normally stays in the ducts. I understand the difference between IDC and DCIS, but now don't know what mine is. I had a core needle biopsy, so maybe it's unknown about the surrounding tissue just yet...
Edit for P.S.
Also, HER2+ is more aggressive, faster growing? Do I understand that correctly? That's part of the confusion with reading my report vs. hearing what the Dr. said. I didn't get to see the report until AFTER, so didn't pick up on these discrepancies until later..0 -
mjb - HER2+ is more aggressive but there are treatments for HER2+ now that were not available in the past. And yes, since your are ER/PR negative, it's even more important to consider chemo first - with Herceptin added as a targeted therapy. And maybe Perjeta also. Remember - surgeon's cut. The good ones recommend other avenues in conjunction with their surgery. Whatever the surgeon says, go talk to a medical oncologist before you commit to any treatment. It's important to have all the information before you start. And much easier to get clear margins with surgery if chemo shrinks the tumor(s) first.
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Hi Mjb-
We want to welcome you to BCO! We're sorry you find yourself here, but we hope you find this community to be a source of support as you begin down this road. Our advice is to write down any questions you have for your surgeon in advance, so you don't forget to ask anything. Please keep us posted on how it goes!
The Mods
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hi MJB - I also agree with MinusTwo to encourage you to inquire about chemo first combined with Herceptin and Perjeta.I had 6 rounds of taxotere and carboplatin (chemos) and herceptin and perjeta (immunotherapy targeting Her2+). This seems to be the latest direction of most progressive surgeons/oncologists.
I'm sorry to hear of your diagnosis but so believe you will find great support and answers here.
Wishing you the best as you start. Keep us updated as you go
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MinusTwo,thank you for your insight I really appreciate it.
Mods, thank you for the welcome! Oh,do I ever have a list of questions for the surgeon
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livebig, Thank you. I’m definitely going to ask about the chemo first. I’ll be back with an update once I meet with the surgeon. I’m so grateful for all of you lovely ladies here! My mom had BC in her late 60’s early 70’s. I have all her particulars, they’re opposite of mine. She was er/pr+ and HER2-,so it’s a bit difficult to compare notes with her. She’s 10 years cancer free, so yay
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Been awhile since I've been on this thread but thought I'd drop in with an update. I am 21 months out from my last Herceptin. I am doing well, although have had a few scares requiring various scans to check things out. Fortunately, everything has been negative!.
I just saw my Onc for a 6 month follow up & she is recommending Nerlynx for me. She said that even though Nerlynx is used more for ER+/PR+ HER2+++, it is also effective for hormone neg, especially if a node was involved. From what I've read there are lots of potential side effects, with 6 pills daily taken for one year - in addition to others to decrease side effects. She said it would potentially decrease my risk of recurrence by another 32%.
I'm wondering if there are any others that are hormone neg taking this drug. There is a thread regarding Nerlynx but mostly with those who are hormone positive, so I thought I'd check this out here
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Mardea: Interesting. Everything I can see says this drug was specifically approved by the FDA in July for adjuvant treatment for those of us who were HER2+. It's prescribed for one year but should be started within 2 years of completing Herceptin. Sounds like the diarrhea is brutal. I'm going to go read the other BCO thread.
There was a Forbes opinion by a noted oncologist just yesterday about negligible benefits. Sounds to me like not much benefit if we're ER negative. Recurrence data are borderline. Survival rates won't be out until 2020. But it's rated a Toxicity Grade of 3. I think her point is that it may be appropriate for metastatic disease but questionable as a preventative against recurrence if we're NED considering the SEs. HOWEVER I cannot access page 3 of the article - even trying other links to continue. Maybe someone else will have better luck and can post her final conclusion.
https://www.forbes.com/sites/elaineschattner/#29b1...
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I asked my MO about Nerlynx back in Sept. She said that, based on what she knew then, she wouldn't recommend it to me cause it wasn't very effective for ER-/PR- and the SE wouldn't be worth it. Since I was finishing Herceptin in Oct 2017, I have two years to start Nerylnx if more positive data became available. (I'm glad to be finished with treatment.)
I had severe & unpredictable diarrhea during TCHP. I really don't want to go through that again, especially the anxiety of potentially having an accident.
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I wanted to share my experience with osteoarthritis following BC, as I have been trying to find people with similar, new issues of OA and studies that suggest a link to chemo tx and/or herceptin...I was very active prior to my diagnosis in May 2016, started my chemo in July 2016 which ended in Oct 2016, Herceptin continued until June 2017...by active, i mean brisk walking a minimum of 45 min per day while at work (during my 15 min/30 min breaks), alternating continued 30-45 min treadmill/elliptical time once home from work and weekends (again mostly fast walking), or light barbell workouts (no more than 10 lbs, often less) 15 min, or paleo workout (30 min...that is actually how I discovered my lump)...anyway, once chemo began I quickly decreased my fitness routine to ONLY the daily walks at work (and towards the end, I really had to push myself), then came home and sat in a lounger due to the fatigue, and once I had surgery 12/1/16, for the entire month of Dec didn't do ANY prolonged walking, only resuming once I returned to f/t employment after New Years 2017...my right knee started bothering me within 2 weeks of resuming my walks at break time, but I just attributed it to my month of inactivity in Dec... I would mention it during every 6 week Dr visit during my continued Herceptin treatments, but my MO indicated there was no known connection of the chemo or Herceptin with joint pain...eventually (March) I went to an orthopedist who did X-rays and diagnosed OA in the right knee, no space between the bones...got a cortisone injection/no help, did 2-1/2 mos of dedicated PT 3x/wk tapering off to 2x/wk, continued exercises at home as the Right knee was doing better (I had been using a cane until then)...then my LEFT knee started doing the same thing...back to the orthopedist/more ex-rays, deterioration of fluid in LEFT knee, none left!, still on Herceptin at this point...now I am waiting for my insurance to change in Jan and hoping my new provider will approve the Synvisc One or Monovisc injection to prolong partial-knee replacements, which is what the Dr said was the recommended treatment if nothing else worked...I have NEVER had any injuries to my knees, never had ANY pain in my knees, was NOT a sports player as a youth...so this has totally thrown me for a loop...I tell everyone this OA is more of an issue than ANY of my cancer treatments (chemo/surgery/radiation) were...not being able to walk (currently mostly just stiff-kneed, not a lot of pain but that could change at any moment) has totally incapacitated me...getting up from the floor nearly impossible, have to crawl to a chair to push off with my arms to stand...how am I going to play on the floor with my grandchildren, once I have any (2nd child getting married in May!), still trying to keep up w/ my walks at work during breaks though...just thought I would let others who are having OA issues after BC treatments know my experience! Hope others will also share if having this issue!
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Thanks for sharing the link on neratinib MinusTwo. I agree. Especially when Her2 is hormone negative, there seems to be no reason for enduring the toxicity.
Mapper, I'm sorry that on top of cancer treatment you have to suffer pain and mobility problems. It's hard to tell if it caused the osteoarthritis, but I believe that Herceptin can damage tissues, especially in the long run.
Although my oncologist always maintained that it was not caused by Herceptin, I had a bad itch on an arm/elbow that would peek a few days after infusion. Four weeks after the last infusion, it was gone. I have since developed what was diagnosed as tendonitis in the same elbow.
Others have posted on this forum about painful joints and itching caused by Herceptin and some oncologists give long-term patients Herceptin "breaks" so they can have some relief from the side effects.
Whatever the cause, I hope you'll find some relief and that by the time you grandchildren can walk you'll be chasing after them 😊
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Although I never had joint/muscle 'pain', I did have joint/muscle stiffness and weakness in my legs. My legs were so weak that I could not do lunges and even walking up stairs was uncomfortable. My right leg was worse than my left leg. (I was still able to jog/run on the treadmill though.)
My last Herceptin was 30 days ago. About 5 days ago I noticed that my legs are much stronger. I noticed the change when got out of the passenger side of the car -- my right leg didn't have difficulty supporting my weight.
I'm not itchy anymore (but the weather is cooler now so that may be the reason) and I *think* my hair is growing faster. My nails are still brittle.
I'm surprised (and thankful) that the joint/muscle issues have subsided so quickly after finishing Herceptin.
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Mapper, I'm sorry to hear about your problems with osteoarthritis!
I've had several issues as well, although I've been attributing them more to the onset of Age than anything else. 😉
I completed AC-THP in April (Herceptin only since June '16), and a BMX with DIEP flap in Aug '16.
Last November I developed a frozen shoulder while actively participating in PT during recovery. (So never let anyone tell you shoulders freeze because of disuse!) When they took an MRI, they found a little osteoarthritis... and a little bursitis, a little tendonitis, and of course, the fused ligaments from the frozen shoulder. I also noticed that my knees got weaker than they had been; but now that I'm several months off chemo, they feel as strong as ever.
My nails are still a bit brittle, though I have no clue whether 7-8 months is long enough for these to be new, post-chemo growth yet. But my hair is back in full form! I only had about 1/4" of incredibly soft fuzz on my last day of chemo; today, it's skimming my shoulders in spite of all this new curl.
At the same time, I managed to develop a new adhesive allergy, and still have an angular scar where the corner of some surgical tape caused severe blistering last year. I even noticed some mild irritation under the paper tape I used to cover the areola tattoos as they healed just this past month.
So two out of five SEs have completely cleared up, another two are showing great progress, and I'm hopeful about the adhesive reactions clearing up someday, too. Someday soon, I hope!
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Met with the surgeon today. MinusTwo & livebig...I'm getting a port on Wednesday of next week. As you indicated, chemo first. I was right, too, with my concern of the words my general practice Dr. used vs. my path report. I'm no Dr. but smart enough to know that IDC is way different than DCIS. General Dr. described DCIS by using the words “slow growing and stays in the ducts". I have IDC ER/PR negative -, HER2+ AND Ki67 30-40%! My poor husband was beside himself. He was going in expecting lumpectomy and radiation. I just KNEW that wouldn't be the case. Currently waiting for BRACA test, lymph node ultrasound/biopsy and meeting with the oncologist.Here we go...
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MJB - glad to hear you have a plan. Sounds like a good one. I am glad I started with chemo because it gave us a chance to see how my tumor would respond - I loved feeling it get smaller which honestly helped me to endure the chemo symptoms. It wasn't an easy road - but is manageable! You can do this! I'm sure it is still shocking, but I always felt some relief knowing a plan was in place. I think you will feel even more relieved once you start that plan. Will you meet with a medical oncologist next? Your surgeon can maybe help in picking one - or these boards are sometimes good for that as well depending on where you live.
I am hoping you have a great response to the chemo. There are lots of tips here - and of coarse you can always post away here or message any of us with specifics.
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livebig-Thank you! Yes, being able to feel the mass shrinking will be comforting. Exactly what the surgeon said. 😊 An appointment with the MO is in the works. I’m going to the oncologist who treated my mom. Besides her input, I’ve heard nothing but good things about him. Next week will be filled with these appointments, I suspect.
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elise: This is a great BXO thread about allergies or problems w/adhesives. I can not even use paper tape. There are lots of ideas. Personally I always make the docs use Applicare or Cavilon wipes before bandaging and I only use Medopore or Hypafix tape. I think you'll find this interesting.
sorry - I forgot to send the link.
https://community.breastcancer.org/forum/91/topics...
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