TRIPLE POSITIVE GROUP
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Lovemyyorkies - So happy to see you post today. I've been thinking about you but obviously we've been on different threads. I stopped Taxol after 8 sessions because of very painful neuropathy in my feet. I had Herceptin, not Kanjinti, but had NO problems. I was comfortably getting the infusion in 30 minutes. If you aren't, you can have them slow it down.
The AI's. More trouble. Very much another menopause. Achy joints, hot flashes, thinning hair, mood swings. I was angry a lot. While all the AI's do have some SE's, work with your MO to find the one that has the fewest FOR YOU. Mine didn't but some doctors have you take a smaller dose - half a pill or a pill every day - for a few weeks. Pay attention to the manufacturer. That too sometimes makes a difference. There's a thread called "doing well on AI's" which I recommend. Remember that people who are doing well are less likely to post than those who aren't.
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Thank you taco1946. My MO is very good at listening to me. I will be going back to NW Indiana in January so hoping to find MO that is as good as here in TN. We are taking care of 98 yo father-in-law. Not looking forward to winter there.
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Haven’t been on here for a bit, but wanted to follow up and share that we did decide to go with the Taxol+Herceptin for 12 weeks, etc. The final deciding factor was the high nature of my HER2+ (97%) and both MO’s said that was the kicker.
It was good to have all 3 of us in agreement. Ready to get this over with.
My port will go in on 11/10/2020 and the first THP round is on 11/12/2020.
Trying to keep myself busy and get some things in order. Any tips on things to have on the ready? I know everyone responds differently but I feel better if I think I might be able to plan for something ... appeases my controlling side. LOL!
Hapa, SpecialK, Taco1946, AnnatheBrave, Cowgirl13 thank you for all your Earlier feedback and comments.
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Best of luck GG2020!
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GG202. - glad you are comfortable with your decision. I only had Taxol so can't help you with what to expect. I'm certain that there is a thread just for that - there is for everything else.
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GG - chemo is not that bad and will be in your rearview mirror soon! Your MO will give you a pile of medications for the SEs and a schedule to take them. If one day you're wondering if maybe you need to take an extra anti-emetic, take it. Best to get out in front of any nausea b/c once you start puking it's hard to stop. For me, lack of usual appetite was an early indicator of nausea, so if I wasn't hungry at my normal time I'd take one of my anti-emetics just as a precaution. And join the monthly chemo thread!
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GG, as others have said, it isn’t as bad as you might expect! I just finished last Thursday. My treatment is different from yours so I won’t comment on my particular experience in terms of what to expect but I think it’s important to hear that it probably won’t be as bad as you might expect! Someone on these boards told me that before I started and she was right and it really helped me approach the experience with confidence. Make sure you stay in touch with your care team when you experience side effects or weird symptoms bc they will often have a solution or suggestion to offer.
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Hi all, I've been off this board for quite some time because my fears were overwhelming. I finished chemo the summer of 2018 and finished herceptin and perjeta last March. My next mammogram is scheduled for the end of next month and I'm already shaking over it. It will be the three-year mark since my initial diagnosis. I am wondering if I will feel this gut-wrenching fear forever. How do all of you deal with the fear when mammos are coming up?
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Hi tld,
I had double mastectomy so I don't deal with mammograms, but I totally understand your fear -I recently had a bone pain scare, got a bone scan (which thankfully came back clear) and I was surprised by the intensity of the anxiety, terror and panic that I experienced during the period heading to the scan and later while waiting for the results.
My conclusion is that I need to get better at living with this fear. Learn to better recognize it, acknowledge it, face it, manage it. I am in a meditation group, which helps. If you look at your chances of recurrence, they are low. Your cancer was slow growing, from what I see in your signature. I ended treatment with Herceptin-Perjeta on March 2019, and Nerlynx on April 2020, and since then, additional data on the long-term benefit of both drugs was published, which is very, very encouraging. You have many reasons to feel hopeful. I encourage you to take a good look at the numbers and take reassurance in the fact that you got very good treatment that is likely to keep your cancer at bay.
Also, one of the reasons I got a second, prophylactic mastectomy, is that I didnt want to deal with mammograms. My breasts were extremely dense and cancer never showed in my mammograms, so they were only going to cause me worry. I did this second mastectomy a year after the first surgery. You can change your mind down the road and get a mastectomy if you think it will give you peace of mind.
Best to you, take care,
LaughingGull
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Hi Everyone - well I had kind of moved on with this year. After my DMX 12/2019 my treatment plan was Taxol/Herceptin and Tamoxifen. I failed with Taxol and could not continue so we continued with Herceptin and started Tamoxifen right away 2/2020. Things were going well.
I had a baseline uterine ultrasound 3/2020. Went on Monday for annual pap smear and 2nd uterine ultrasound to check things out. My uterine lining had thickened and I showed early signs of possible hyperplasia with possible cystic changes. Thanks to those findings I had to have the lovely endometrial biopsy. Ugh!
Have met with the general gyno surgeon and a hysterectomy is definite we are just waiting on the biopsy results to see if it will be the general gyno surgeon or the gyno oncology surgeon. Either way looks like surgery will be before the end of the year.
I am freaking out - not so much about the surgery, that is scary but having surgery in the middle of covid numbers increasing. Doc said if we can do surgery early in the AM and I can walk, pee and pass gas I can go home that same day. Still - surgery in the middle of covid!
Good thing - my oncology nurse called to say stop the Tamoxifen. Whew - glad to be off that roller coaster!
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Covid really has made an already complicated situation infinitely more challenging, from the absence of tangible support from family and friends due to their need to remain distant to the childcare challenges presented by virtual learning to, of course, the increased health risks and the accompanying stress. It’s so hard and frustrating.
I just finished TCHP and am about to have my first HP-only infusion before surgery (after which I’ll either remain on HP or switch to Kadcyla). I was wondering if anyone experienced a worsening of lowerGI symptoms after switching just to HP? I had diarrhea, albeit relatively mildly, my first round of TCHP, but each round after I was actually pretty constipated and never had diarrhea again. I’m wondering if maybe the combo of carboplatin and zofran might’ve counteracted the effects of Perjeta and if the diarrhea might return. Anyone experience anything similar?
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anna - I struggled with GI issues throughout the time I received Herceptin (I was treated prior to the use of Perjeta for early stagers) and once I was done with chemo the head onc nurse suggested using a probiotic. This made a world of difference for me. I would also advise using a slow infusion for the targeted therapies - a significant number of people experience a worsening of their side effects, for me it was new joint/bone pain, with a fast infusion - 30 minutes. I had received 90 minute Herceptin infusions during chemo and had no issues with pain, even though I was also receiving Taxotere. The first 30 minute infusion of Herceptin only and I was in agony for about a week. I asked to slow back to 90 minutes and had no further pain. Toward the end of Herceptin I started getting low grade headaches also, which went away once I was completely done.
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Anna I had pretty bad diarrhea on TCHP. I had 1 dose of solo HP and didn't have diarrhea. I'm on Kadcyla now and, constipation is the main SE (for me)
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Rlmessy: Did you mom have a lumpectomy or masectomy? Just wondering.
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Anna: I had horrible constipation on TCHP, which didn't improve much on HP, then H, and now Kadcyla. At least now the laxatives are working better though. I am sorry!
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chosen2020 - my mom had a single mastectomy in 2006.
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Hello everyone..
I was diagnosed with ER+ IDC in Sept 2020. I had my lumpectomy Surgery end of Oct 2020. All along the Her2 status was negative with the initial breast biopsy and surgical pathology had come up as 2+ equivocal and today FISH came out as positive. So that would make me TP. This is a new twist to me and I am not sure how the treatment plan is going to be. MO will call me tomorrow so will know more as we were planning to start chemo next week or ding these results.
How have things been different for you from other Her2- cancers? What additional treatments do you go through? What do you have to look out for? Is this type of cancer hard to treat and more aggressive? Any info would be greatly helpful. Please let me know how you have done since diagnosis.
Thank you!!
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Hi!
Triple positive cancer IS aggressive, but it benefits from targeted therapies like Herceptin, Perjeta, Nerlynx, and Kadcyla. It is also the kind of cancer that tends to recur in the first 2 - 5 years after diagnosis. I'm now 6 years past my diagnosis, so I only see MO every six months. (Previously, it was every three months.)
Most breast cancer patients with TP get chemo AND targeted therapies. Many get six doses of Taxotere + Carboplatin +Herceptin + Perjeta; some of us (like me) get Adriamycin + Cytoxan X 4, and then weekly Taxol + Herceptin + Perjeta for 12 weeks. If there's any residual cancer after chemo (and chemo occurred before surgery), TP patients increasingly get Kadcyla.
TP patients also get hormonal therapy, which is just like ER+ cancer.
It's odd (but not impossible) that your first sets of lab work showed HER2-. You may want to ask for another opinion if you don't trust the latest lab results.
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Pretty much what ElaineTherese said. There's a lot of treatments and it's longer. You'll get Chemo proper + HP (targeted therapies). These treatments (HP) will go on after you complete Chemo until you get to 18 infusions/cycles (basically 1 year). Beyond that, you will get Hormone therapy (Tamoxifen or AI) and, maybe Nerlynx (preventative pills for HER2+) which you would take for 1 year, only after competing a year of Herceptin.
I'm sorry you had to deal with this twist.
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Thank you ElaineTherese. That's great you are at 6 years. How do you feel overall?
My biopsy was first done in a suburban hospital. I then moved to Northwestern in Chicago for treatment. I do trust them. They did review the slides from the suburban hospital but maybe biopsy was not obvious as even the surgical pathology was equivocal until confirmed by FISH. My tumor also was bigger than what we expected earlier (two masses of 1.8 and 1.5 cm) turned out to be one mass of 4.8 cm after surgery. My MRI and scans from last year were all negative and I often wondered how things changed in the course of 16 months. Now it makes sense.
Does having surgery first for TP cancer help at all as it looks like option would have been to have chemo first? Now there is no way to test response to chemo?
I also wonder now how my right side is going to be protected. Does the recurrence still happen even with the targeted therapies?
Did you have side effects with the targeted therapy? Is it better or worse than the chemo?
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Hi!
I feel good! I'm a little creaky, thanks to the hormonal therapy (Zoladex + Aromasin), but I'll be off of that in a year or so.
Chemo before surgery is a relatively recent phenomenon for TPs. For the most part, it was a response to the development of Perjeta, as this targeted therapy was only recommended for pre-surgical treatment in TP patients who had tumors that were two centimeters or larger. Yes, neoadjuvant chemo does give you some idea as to whether chemo was an effective treatment for your particular cancer. However, plenty of TPs have done just fine with a surgery-first treatment protocol. In my case, the best thing about doing chemo first is that it wiped out the active cancer in my breast and compromised lymph node so I could opt for a lumpectomy.
I'm not sure what you mean by protecting your right side. Chemo + targeted therapy is systemic -- it is designed to kill cancer cells that may have broken off from your tumor and are circulating in your body, looking to find a new home. Chemo is particularly effective against Grade 3 cancer because it is designed to destroy rapidly-dividing cells.
Yes, recurrence can still happen with TP cancer, but, thanks to targeted therapies, it is no more likely to recur than ER+ cancer.
RE: side effects from targeted therapies -- some TPs claim that Perjeta gave them diarrhea while they were doing either Taxotere + Carboplatin + Herceptin + Perjeta or Taxol + Herceptin + Perjeta. My oncologist says that the diarrhea could also be from Taxotere or Taxol as the taxanes generally cause gastrointestinal distress. I did have diarrhea after my Taxol + Herceptin + Perjeta infusions, but I could manage it with Imodium.
I did Herceptin alone after chemo; TPs these days often do Herceptin + Perjeta after chemo. I had no side effects from Herceptin alone, but not everyone is so lucky. Herceptin can cause heart damage (which is often temporary). Anyone receiving Herceptin should have regular heart scans to make sure that the heart is still functioning properly. In my case, Herceptin alone was WAY better than chemo.
Good luck! Hope you have a good meeting with your oncologist.
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Thank you again ElaineTherese. You give me hope.
When I asked about why we are doing radiation after chemo if chemo is systemic and takes care of breasts as well.. I was told the chemo doesn't entirely get rid of everything in the breast area. So they perform radiation. So my right breast will not have radiation if chemo isn't going to be effective, how would we make sure nothing happens here?
Are treatments longer for TP if surgery was not started first as intent was to reduce tumor size? Earlier when we were waiting for FISH results MO said treatments are different if Her2 is positive with chemo going for 4.5 months instead of 4 for Her2 negative. I am not sure if that will change tomorrow.
I will update after my call with MO tomorrow.
Thank you again for all your inputs. This is really helpful and is helping me understand more about my cancer.
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I'm several years out and was over 70 when diagnosed. My Her2 status wasn't confirmed until after surgery either. In fact, I had already finished rads before I saw an oncologist as BS and MO had seen my biopsy results. Yes, it was a shock! The standard of treatment for Her2 does include Herceptin. It has been a game changer. During chemo, it is given at the same time as your other drugs. With taxol, that every week but with most of the others, it's every three weeks. What drugs you will get depends on tumor size, grade etc. You will know more after you see MO and people can give you more specific help about expected SE's. Stick with us but also try to find a thread that is specific to your treatment plan. I also suggest you join a "starting chemo on ______". Mine was fantastic and we still Facebook in our private room.
I know it's a really scary time and the holidays makes it harder. I was diagnosed the week before Thanksgiving and had my lumpectomy Dec. 22nd. Covid doesn't help to say the least. You will probably have to see MO alone so write down all your questions and don't hesitate to call your nurse navigator or your MO's PA.
One of the things you probably should think about now is whether your want a port. I'm in the camp that says it was absolutely the right decision for me and others will say the opposite. Knowing that I would need treatment for a year, it made sense to me and I was prepared to leave it in after treatment in case further treatment was needed down the road. If you decide yes, I suggest you try to get it put in a week before you start so it has a chance to settle.
The treatment for your ER/PR status won't start for awhile and will be influenced by whether your are menopausal or not. I am absolutely amazed how much treatment protocols have changed even in 4 years. Nothing is guaranteed in life, but science is certainly upping our odds!
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hopeful - welcome, but sorry you have to be here, and dealing with treatment during a pandemic. I am one who had surgery first, mainly due to the timeframe in which I was treated. Perjeta had not yet been FDA approved for early stage (that was done in late 2013), and the majority of TP patients had surgery first at that time. So, I have no yardstick to indicate the effectiveness of the treatment other than I have not recurred - I just passed the 10 year mark. As far as radiation, because you had lumpectomy it is standard of care because there is no way to insure no cells were left behind as the tumor was removed from the breast and pulled past other healthy breast tissue. Radiation of the breast and axilla is as much an insurance policy as systemic treatment in that situation. Mastectomy sometimes eliminates the need for radiation, but close margins at the skin or chest wall, or positive nodes absent axillary clearance, can require radiation too. Chemotherapy, targeted therapy, and anti-hormonal therapy can provide protection to your other breast, but no treatment provides a guarantee. You will have close surveillance of both sides going forward. The decision on what type of surgery to have, if given a choice, is tied to your tolerance for risk. I chose bi-lateral mastectomy because I image poorly, mammography missed my palpable tumor and areas of DCIS, and MRI missed large positive nodes, so I reduced my risk as much as I could with a more aggressive surgery. It turned out I had ADH and ALH in the prophylactic breast, so a ticking time bomb. One of the things that contributed to my decision was that I always had multiple cysts in each breast making self exam useless, and a 20 year history of issues. I totally understand the reasons many opt for lumpectomy though - it is such an individual decision. The length of time for chemo varies due to the different regimens used, even if you are Her2+. Taxol with Herceptin is a twelve week regimen, dose dense AC-TH(P) is a 4 month regimen, but TCH(P) is slightly longer because it is a 21 day interval with six infusions. With all of these the Herceptin, and Perjeta if you are receiving it, would continue for the balance of a year - so if you start in November, you would finish those targeted therapies Oct 2021. Keep asking questions - this is a great group of folks and we are here for you.
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Thanks so much. You are all so nice!
Talked with MO this afternoon - I will get 4.5 months of Chemo with Taxotere, Carboplatin, Herceptin and Perjeta. Then after that we will drop chemo drugs and Perjeta and continue with Herceptin for rest of the year every 3 weeks. She says Herceptin is well tolerated for most part, will have to see. They will do an EKG before starting the procedure. After that 6 weeks of radiation and then tamoxifen for atleast 5 years. Hopefully this Chemo cleanse as I call it will get rid of everything bad and life will start again putting this all behind me.
She did say Perjeta adds a bit more to side effects of Chemo. Please let me know your experiences with those. She did say she will have one of the nurses schedule a 1 hr call to go over everything. They do have recommendations for those. She does recommend a port for the 1 year. Does anyone have bad experiences of having the port and getting infections or complications? That was my worry. I know it makes things very easy.
Off to my wig consult now so I am prepared for my hair loss.
Thank you again for all your support.
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It is nice you have wig shops locally! I had to order online (but ended up with really inexpensive ones from Paula Young and they fooled even people who know me well -- even the chemo nurses were shocked when I just pulled it off in the chemo suite 'cause they thought it was my own hair!)
I kind of love my port. I was sore for longer than most people, but oh it makes things easier! And I did the TCHP, then after surgery I had residual disease so now am on Kadcyla, and that makes me especially thankful for the port.
Do get seatbelt cushion. I got mine off Amazon. It helps (my port is right where the seatbelt comes across my chest, and I don't have a lot of padding of my own there. Other than the seatbelt, I never think about my port except to be grateful at infusion time or whenever I have blood drawn.
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Sounds like you had a good appointment! Six years later, I still have my port! Because....I'm superstitious??? Obviously, I haven't had problems with my port because I still have it. I just get it flushed every 4 weeks or so and that usually coincides with my shot (Zoladex) for ovarian suppression or some other procedure (Prolia shot for osteoporosis).
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@hopeful - i did TCHP it wasn't awful but, it did build up. Get ice mittens/socks for your infusion day, wear them during the chemo treatment to help prevent neuropathy. Also chew on some ice chips during taxotere to prevent mouth sores.
My biggest issues were dry mouth (awful), nose bleeds, taste, lack of appetite and fatigue (starting with cycle 4).
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Hello everyone
Thank you so much for your support, you have no idea how much this is helping me get through this terrible nightmare, yet a real positive eye opening experience that I will never forget ofcourse!
Now for the question that I scared myself today with -- I am coming across several articles and posts in this community of Herceptin and Perjeta causing cardiotoxicity. How bad is this? Life threatening? I am 46 years, pre-menopausal. I have high blood pressure that is now controlled with amlodipine (calcium channel blockers). I am slightly on the heavier side but I am working on losing weight and have lost 10 lbs since the diagnosis with diet and life style changes. Is this cardiotoxicity that bad that I might have to head to the hospital for a heart attack? Have anyone gone through this during your treatment with Herceptin? Are there any symptoms? My MO did say I need a EKG prior to starting. Please share with me your thoughts on this.
@YesIamaDragon - Yes, I found the wig place through the resource sent by my social worker. It's a small store run by the daughter of a lady who had breast cancer and also lost hair. She took measurements and then when the wig comes in, they will cut it like my current hairstyle. She has options for eyebrows and eyelashes. They will be with me through the full process and shave head and adjust wig when the hair falls out. This is going be the hardest part of this whole thing but I will hopefully will get through this. I will look for the seatbelt cushion, thank you!
@ElaineTherese - 6 years? Oh wow! Tips on how you have so well taken care of you port? When is ovarian suppression needed?
@morrigan_2575 - Will the ice mittens/socks slow down the drug movement in the hands and feet? What is neuropathy and how does it feel like?
@SpecialK - The decision for the lumpectomy was mostly driven by the size of the tumor at the beginning of diagnosis but never did I imagine I would end up with a 4.8 cm tumor. Initially there were thoughts about getting an oncoplastic reduction on both breasts since I want to get them reduced ofcourse but since this whole thing has so many treatments, I wanted to get through it all one time and maybe revisit the mastectomy scenario a little later.
@Taco1946 - Port it is!!
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Hi!
In most cases where heart damage occurs due to targeted therapies like Herceptin, the patient suffers from low ejection fraction. Symptoms of this condition include:
- Shortness of breath or inability to exercise.
- Swelling of the feet and lower legs.
- Fatigue and weakness.
In such cases, the patient will take a Herceptin and/or Perjeta break, and wait to see if the condition resolves itself. If the patient recovers, there may be another attempt to resume targeted therapy. If not, the patient might just quit. My neighbor made it through four cycles of TCHP before she suffered from heart damage and had to stop. Interestingly, the four cycles were enough to clear out her cancer.
I was 46 when I was diagnosed, and also suffered from high blood pressure (which is now controlled by Amlodipine, Hydrochlorothiazide and Lisinopril.) I had no problems with Herceptin or Perjeta.
I am doing ovulation suppression (Zoladex) so I can take an aromatase inhibitor (Aromasin) instead of Tamoxifen. (I'm still pre-menopausal.) But, Tamoxifen works well, too.
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