TRIPLE POSITIVE GROUP

Nsbrown54...I finished my 6 round of tch (MO took the prejeta out after 3 rounds) on October 29. I asked my MO if we could hold off the herceptin until after my surgery and she was ok with it. I have my first infusion on Dec 21 which will be almost 8 weeks since my last one. I have seen studies that show 6 rounds of herceptin is as beneficial as 1 year. I plan to take the studies to my appointment on Monday.

nsbrown - the convergence of post-chemo and surgery, and the start of anti-hormonal therapy, are surely contributing to you not feeling as good as you would like, or having days when fatigue gets in front of you, but time should help. Some people take a little while to adjust to anti-hormonal therapy, and it also takes some time for anesthetic to work its way out of your system, generally a week for every hour under anesthesia. Recovery from chemo, as evidenced by the return of your CBC values to normal, can takes a few months at a minimum. Do you know what your hemoglobin level is? If it is low - which is normal at this point - it can contribute to fatigue. On the targeted therapy front, most do continue with targeted therapy on schedule without any delays, but your docs are doing what is right for your individual situation.

iamloved - are you sure it was not a 6 month course rather than a 6 round course? The really short FINHER study was only 9 weeks, but I don't think you will find a US MO who would shorten to that voluntarily, but it is potentially decent news for anyone who has to discontinue for cardio-toxity reasons.

https://www.onclive.com/view/shorter-trastuzumab-duration-matches-12month-standard-for-early-her2-breast-cancer

https://pubmed.ncbi.nlm.nih.gov/27875516/

Thank you for the response SpecialK. My hemoglobin, potassium and magnesium are all low, but have been improving. I seem to forget the obvious, that my blood counts contribute to my fatigue. I assumed it was the letrozole. During chemo, especially the last 3 treatments, I required extra fluids, extra magnesium and potassium, and a blood transfusion

Onco decided I should stick with HP instead of switching to Kadcyla because there’s “no demonstrated benefit” in people with my characteristics (technical pCR with residual DCIS)—I know this is how science works, but it annoys me so much. No demonstrated benefit bc they haven’t done the trial...but one could certainly ASSUME a benefit based on the Katharine trial! I know, I know, that’s not how this works, but it’s so frustrating (and sometimes scary) to hear news of these amazing new therapies that are still in the nascent stages of research and from which I will not be able to benefit. I mean, it’s also wonderful for the future of the field and for future women...but I just want ALL THE DRUGS RIGHT NOW!

Anna,

I missed out on Nerlynx because it came out too late for me. I didn't mind; many on Nerlynx get diarrhea (though it can be controlled). By the time Nerlynx rolled around, I was OK with being done with active treatment and was more focused on getting through hormonal therapy.

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

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!

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.

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.

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.

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

Great news, Angels Gal. Enhertu. I will try to remember that! Wish they gave new drugs catchier names.

That is great to hear! There seems to be a lot of promising research coming out!

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.

https://hscweb3.hsc.usf.edu/nursingnews/meditation-based-intervention-reduces-anxiety-fear-and-fatigue-among-breast-cancer-survivors-usf-nursing-study-reports/

https://www.mindfulnesscds.com/

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