TRIPLE POSITIVE GROUP
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anna - I get wanting all that is available! I was treated too early for Perjeta, but would have qualified for it with a 2.6cm tumor and two positive nodes. I obviously also missed out on Nerlynx and Kadcyla, and will never know if I would have achieved pCR since I was treated adjuvently. I have to go on faith that what I did get did the job, although I did not have rads because I had ALND. Some oncologists and RO's would have pushed rads on top of ALND, but neither my MO or BS endorsed that - I will always wonder though. I did participate in a Her2+ recurrence prevention vaccine trial in an effort to add another arrow to the quiver, and found out at the 5 year point post-trial that I did get the vaccine. The good news, I am still here and as far as I know I am NED. Remember that there are no absolutes in this game and, while it is sometimes hard, go with the percentages and the knowledge that there are indeed downsides to treatment that may not be necessary or provide quantified benefit. More is not always better.
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I received some disappointing news this morning. Had a lumpectomy on the 15th, no neoadjuvant chemo. Final pathology is 25 mm and 2/5 positive lymph nodes and lymphovascular invasion. At least the margins were clear. Next up is chemo which I am assuming will be more aggressive with the positive nodes. I was really hoping for negative nodes. Only one node looked indeterminate on MRI which was biopsied by core needle and came back benign before surgery. One node was 14mm and the other was 10mm. They would have done neoadjuvant chemo if that core needle biopsy had been positive and I suspect that was one of the nodes that was ultimately positive.
No one has mentioned stage to me but it looks like anatomically stage IIB and prognostic stage IB. Not sure if it matters but people keep asking me. I think I'm just going to say I'm stage II. Honestly, im looking forward to starting chemo so I can kill the loose cells that could be in either my vascular or lymphatic system right now
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Redcanoe,
Chemo will probably be the same, regardless of the nodes. If your lump were smaller, you might have gotten away with Taxol/Herceptin/Perjeta. Otherwise, you'll get either Taxotere/Carboplatin/Herceptin/Perjeta or Adriamycin/Cytoxan + Taxol/Herceptin/Perjeta.
One of my nodes tested positive before chemo; it did buy me a PET scan but nothing else. ((Hugs)) It's hard to hear the pathology was a bit worse than expected.
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Redcanoe - you are similar to me. I had 1/4 positive node and 1/4 with ITC along with lumpectomy and margins clear. The tumor size was larger in the post pathology than MRI but it was almost 6 weeks between the MRI and surgery so not sure if it grew or imaging was not accurate.
Today was my second chemo. My suggestion is write down everything from what you eat, symptoms, what meds you took, what things you tried on a day-day basis. It really helps to see a pattern. Diet will play a large role. I am hoping to navigate my second round based on what I learnt first time around, will see.
Good luck. You will start feeling better soon!
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Redcanoe- sorry to hear you got disappointing news, especially during the holidays. I had a similar beginning as you this time last year. My post mastectomy pathology showed a positive node when initially no imaging showed nodes positive...it was such a bummer to get news that the pathology was not as originally thought...but a little worse. I made it through chemo, rads, and now am onto the final rounds of targeted treatment + OS/AI. Hopefully soon you can get a plan in place and get started on treatment. Sending you hugs and strength
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I am so sorry, RedCanoe. The setbacks in the disease are so hard! And you had to travel so far from home as well.
I can assure, while chemo sucks, it really is temporary! Some lucky folks sail through even TCHP without missing any work other than their infusion days. For me it was very rough, but I made it through and my hair is growing back and I am learning I kinda like short hair, after many years with long hair. And I think pretty much everyone here will tell you the same thing. Hang in there, it is ok to cry and be angry and disappointed and all the feelings.
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thanks for all your replies. I'm really trying not to let the worry get to me. I go back to Edmonton in early January to meet my oncologist and am likely doing my first round of chemo alone
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Hi everyone. I haven't been here in 2 years, I believe. I was diagnosed HER2 triple positive in June 2018. Since, I've overcome 6 rounds of TCHP, 2 surgeries, radiation, a false scare of recurrence when a lymphnode lit up during an MRI, and a bunch of check ups in between. I'm 28 years old, and I got through all of that treatment with one goal in mind: return to life as it was before cancer.
Boy, I was in for a rude awakening. Here I am now, and I'm struggling with my mental health and PTSD. Because it's the holiday's, the mental health experts/psychologists I've reached out to are unavailable. I feel so down and hopeless sometimes. The crying is hard to overcome.
What are some ways, in addition to therapy, that helped you cope with anxiety, depression and/or PTSD as a result of your diagnosis, treatment and outcome. I feel like I entered another battle I wasn't prepared to fight for.
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Oh I am so sorry you are struggling!
For me what has helped (not always, but a lot) is making a commitment to exercise SOME everyday, outside if possible. During the last part of TCHP that was sometimes just laps around the kitchen, but I made a point to get up and do it. And now I am doing a Zoom exercise class with other cancer survivors, and it really helps feeling like I am part of a group, and seeing other people (even at work now we have a lot of people working from home and those of us who still go in are behind closed doors).
Have you reached out to your cancer center to see if they have any video supports available, either video therapy appointments or video support groups or exercise groups?
I was diagnosed in June 2019, so a year behind you, but I started Kadcyla after radiation and just had my last infusion today! I do wonder though, how I will do now that I just take a bunch of pills every day and don't have an every-3-week treatment plan for the first time in a year and a half. This rollercoaster of cancer leaves a lot of us with PTSD.
Hang in there, please!
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youngandscared- I'm sorry you are struggling. I am starting chemo in a week so I am way behind you. This whole process is traumatizing and I have been grieving that there will likely not be a return to life as normal. It is hard to accept. I'm not as young as you but I am only 34. At our ages, most people are taking for granted that they will live a long life and now that has been taken from us. Be kind to yourself. Maybe you need to have a good cry.
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Hi xyoungandscared,
Sorry you are struggling. I can see how you are traumatized by going through all of this at such a young age. I was diagnosed at 47 and I feel pretty traumatized myself. Is your prognosis good? Is there a reason for you to be overly worried, other than the general trauma of going through diagnosis and treatment? (In my case my cancer, did not respond well to treatment, and it was locally advanced with a few ominous signs for recurrence, and I know that this is my main source of worry, sadness and consternation)
Things that have helped me: I got antianxiety meds the first weeks after diagnosis; antidepressants (effexor) the year I was going through treatment; I got a consultation with an oncologic psychiatrist, to discuss how to wean off antidepressants and why, and fr general advice -this was excellent. At the advice of this psychiatrist, I joined a meditation group for cancer patients, this is guided meditation with the goal of learning to live with uncertainty, and this has helped me tremendously. I also work out very often, and I do it outdoors (jogging) at least a couple of times a week, rain or shine. For the last month, I have been living in an attic with ceiling windows, and I find being able to see the sky, the clouds, the rain and wind all day, while at home, very soothing.
You are doing the right thing by reaching out. As you can see, you aren't alone. As others have said, this IS traumatizing. I second checking out support groups at your cancer center. And you can vent away here. Fell free to reach out by PM.
LaughingGull
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Hi everyone. Angelsgal here. I have been on this particular group for quite awhile and wanted to share some very encouraging news.
Back in Sept I found out that the 2nd round of Kadcyla I began in March, (just as covid 19 hit) did not work and my B C had spread in cellular form all over. In lungs, spine, back and my jaw. This was devastating news as we were doing the second round of Kadcyla to get rid of what little cancer remained.
My Dr felt I was an excellent canidate to try a new treatment that had just been approved and I would be the first patient at my hospital to go on it.
I began Enhertu in Oct and we have followed my progress with weekly blood tests. I just finished my 4th infussion and my cancer marker test in 2 weeks went from 34 on the 15th of Dec. to 17 on Dec 22. And overall my white blood cell counts have not shifted over the 3 months and are as strong as ever.
I am blessed to be a test case for this brand new treatment that will give hope to us all.
I see very little about this treatment except on FB they have posted an ad.
Angelsgal
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congrats! Great to hear the new treatment is working!
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Great news, Angels Gal. Enhertu. I will try to remember that! Wish they gave new drugs catchier names.
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ElaineTherese
I tried to post a link but it is too large. There seems to be several new treatments coming out and that is so hopeful.
I wish I had others to talk to about their experience with this treatment. I am blazing a trail for others I guess.
Angelsgal
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That is great to hear! There seems to be a lot of promising research coming out!
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@Angelsgal - there's probably a support group on Facebook. I've seen a few people in my Kadcyla support group that have dropped to go to Enhertu. If not you could always create one and see who joins.
Best of luck!
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Enhertu is indeed new, but my understanding is that it is only currently for use in unresectable or stage IV. Like all of the previous Her2+ meds though it will likely only be a matter of time before it is approved for early stage, although unresectable covers some ground that can be interpreted a number of ways.
angelsgal - if you use the search function on this site and just type in Enhertu, you will see posts from others who are using it now, there are a number of members who are. I am so glad that this drug is working for you!
youngandscared - Sorry that you are struggling, and I certainly understand it. I participated in a study shortly after I finished chemo that was done by the USF School of Nursing and Moffitt Cancer Center, and used mindfulness and meditation to help with stress. Mindfulness was taught and we were monitored with saliva and blood testing looking at the stress hormone cortisol. The study was looking at the methods outlined in Jon Kabat-Zinn's book Full Catastrophe Living and his methods for controlling worry and living in the moment. I have found what I learned to be the single most important tool for me in learning how to live with quality after having had this diagnosis. This may be a resource that could be helpful to you too - I hope you can find something that is helpful. Here is a link to the author's website, and also to the study.
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question about hair issues. I lost all my hair when I had initial chemo in 2017 and it took 3 months to start growing back.
With Enhertu infusions I have had substantial hair thinning which is something new. Will I eventually lose all my hair as I finish last 2 treatments? I have been taking 10,000 mcg of Biotin and am thinking of taking it twice a day instead of just at night.
Need some help here.
Angelsgal57
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AngelsGal - such wonderful news about your response to Enhertu!! I think this is the wave of the future along with other meds coming up.
I wish I had an answer about the hair thinning. Let us know what you find out
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I want to thank everyone for their responses, and time. I never received notifications that anyone had responded, so I was sad for a bit thinking I was more alone than I initially thought. But I'm so happy to hear that I'm not.
Thank you everyone, and happy new year to you all. I'm still struggling, but not as much as I was when I wrote here.
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Once we’ve completed TCHP and started HP treatment, are we still immune compromised? Just wondering if it’s safe to go to grocery store (wearing a mask of course)? Other than doctor offices and oncology cente, I haven’t been anywhere else since I started treatment.
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nsbrown - that is very individual, and dependent on a number of factors. How chemo affects blood values is different for everyone - some poeple don't have much of an effect at all, other have a lot. Did you receive Neulasta injections during chemo? If so, those should have offered a level of protection for you. Targeted therapy can depress, or continue to depress, WBC levels post-chemo, but often I think it is a case of a dip from no longer receiving WBC boosters, and the slower rebound of blood values for some patients. Does your MO continue to do a CBC before each infusion of H&P? If not, that may be a good snapshot into making decisions about how much public exposure you and your MO think is tolerable.
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Hi SpecialK - I’m just received the Kanjinti and magnesium, no steroids or Neulasta.They’ll do blood work my next treatment, but otherwise, I won’t get regular blood work like before. I did speak with one of the triage nurses and she suggested that I go off hours, when stores are less busy. She suggested avoiding busy times.
Thankfully, I live in a state where masks are mandatory.
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Im on Kadcyla, it still impacts my WBC/ANC, they're low but, not TCHP low. I go out food shopping and regular stuff. I've just learned to go off hours. My ShopRite is open 24 hours so I go at 6:30am (used to go at 4am). Mostly just me and employees.
I've learned that if you go some place first thing in the morning (as soon as they open) there's not much of an issue.
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Thank you for the input morrigan_2575. Pre BC diagnosis, I had been going Sunday mornings, which is usually a quieter time at our local store.
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Nsbrown - many stores have senior hours - go then if you can. Or try ordering on line and just picking up. Harder to buy meat that way but we've done fine with everything else.
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i sigged up to participate in this Phase 2 Clinical Trial. I really like the idea of using vaccines to train the immune system to recognize and attack cancer cells.
https://www.clinicaltrials.gov/ct2/show/NCT0338491...
It's a 2 ARM trial, no Placebo group, i will get a vaccine either way.
There are 2 outstanding questions, one pertains to travel vaccines (I'm supposed to go to Africa in August 🤞🏻), the other is if I can start Nerlynx during the trial or if I have to wait until all boosters are completed (12 months).
For those that have done Nerlynx or vaccine trials or both, what are your thoughts on delaying Nerlynx for 1 year? I looked and, I can start Nerlynx within 2 years of surgery which would be June 2022. So I'll have time since the vaccine portion of the trial should finish March/April 2022.
However, I am a little worried about the delay. Nerlynx has a known benefit, anywhere from 2-5% risk reduction. The Vaccine is unknown but, could have as good or maybe even better results.
Any thoughts or suggestions?
ETA: Per the Dr running the trial in NJ, these vaccines target HER2+ cells/expression because they believe that this is the primary driver even for Triple+. I know that's still a question as to what drives our cancer since we're a sub-category of HER2+ BC.
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morrigan - I did a vaccine trial, but did not have Nerlynx as I was treated before it was approved. Your questions need to be directed at the study coordinator for your location since they are pretty specific. I am not sure how they will view Nerlynx or other vaccinations as both may muddy their waters as far as studying the affect on your immunity - my vaccine trial involved a lot of blood draws looking at t-cells. Do you have a date for exchange surgery, or have you already exchanged? There is also a surgical exclusion. I am wondering if another option is to do Nerlynx first and enroll int he trial afterward since it will be open to 2022. The potential issue is the very small number of participants they are recruiting, and they turning you away if they achieve a full trial and close recruitent before your year of Nerlynx is up. Was that your thought on your timing?
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Special K - I asked the Investigator about Nerlynx, they're waiting for direction from the Sponsor. I also asked about surgery as my Exchange is scheduled for May. I was told I can do the surgery as scheduled there's no restriction there.
I think my options are
1) do the Vaccine Trial and, delay Nerlynx by 1 year but, still do Nerlynx.
2) Don't do the trial and, go straight to Nerlynx in April/May after completing Kadcyla.
3) Start Nerlynx in May after finishing Kadcyla (April), but, only get about 6 months in before quitting to start the vaccine trial in October.
I'm also going to bring all of this up with my MO tomorrow when I go for treatment. My main worry is just the delay of Nerlynx since HER2+ tend to recurr in the first 2 years.
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