Topic: TRIPLE POSITIVE GROUP

Jan 2, 2021 10:22PM AngelsGal57 wrote:

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

Jan 3, 2021 10:55AM morrigan_2575 wrote:

@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!

Jan 3, 2021 05:30PM AngelsGal57 wrote:

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

Jan 4, 2021 03:02PM xYoungandScared wrote:

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.

Jan 7, 2021 02:33PM SpecialK wrote:

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.

Jan 7, 2021 03:37PM morrigan_2575 wrote:

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.

Jan 7, 2021 09:41PM Taco1946 wrote:

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.

Jan 10, 2021 11:26AM SpecialK wrote:

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?

Jan 12, 2021 01:34PM rozem wrote:

hi everyone!

such a long time since ive been on here, glad to see this thread is still going strong. It was invaluable when i was first diagnosed and for many many years after

i had a quick question re: Perjeta - is it now the standard of care treatment for all stages of Her2+ BC? it is added to the taxol/taxotere component of the chemo regime? is it an infusion same as H ? how many does? asking for a friend who was recently diagnosed

so great to see so many new treatments since i was diagnosed

Jan 12, 2021 02:18PM SpecialK wrote:

morrigan - there is a surgery guideline in the study, can't start within 4 weeks - but maybe this is mastectomy/lumpectomy rather than exhange?

rozem - hey you! I think the Perjeta guideline is 2cm or larger, or node positive. It is infused but there are some Herceptin Perjeta combinations that I believe are injectable - Phesgo is one? The initial standard was adjuvent administration of 6 infusions with the taxane, but now has been approved adjuvently for those with disease remaining at the time of surgery, or clinically high risk on a case by case basis. Some are doing a switch to Kadcyla after surgery if they do not achieve pCR.

Jan 12, 2021 04:54PM MsMurphy wrote:

I have a question for those of you who have been around a while. Once, I finish my 6 rounds of chemo, I'll continue on herceptin for the rest of the year. Will the side effects remain similar or can I hope that once I'm off the chemo, things will improve? I'm really hoping to enjoy the summer and regain my life back some after all that 2020 dumped on me.

Thank you!

Jan 12, 2021 05:54PM - edited Jan 12, 2021 05:55PM by SpecialK

rozem - yes, oldies, but happy to be so, right? I think a number of centers here is the US are using biosimilars, but I have also read about some more intense side effects than peeps have experienced on Herceptin. Like with many generics, having the tried and true name brand available is helpful. I know there are many who have done better on Arimidex rather than generic anastrazole, and Femara rather than generic letrozole.

msmurphy - in general, yes, you should start to feel better the longer out you are from chemo on Herceptin only. Toward the end of the 12 months of Herceptin I often had a low grade headache, but that was about my only documented side effect. I found that about 6 weeks from last chemo I felt markedly better, and continued to improve from there. I did have some issues with infusion time for Herceptin though - I had received it over 90 mins with chemo, never had hip/leg/back pain. My first Herceptin only they ran in 30 mins - which is acceptable according to the dosing and administration instructions from Genentech - but I had very intense joint pain for a week afterward, I couldn't even sleep I was so uncomfortable. I requested a slower infusion, same as before at 90 mins, and had no further issues. This is anecdotal, but I have read about it too many times on this site over the last 10 years for it not be a credible side effect of fast infusion. Your oncologist should also continue to track your ejection fraction with echo-cardiograms or MUGA scans, and if your LVEF is low that may affect how you are feeling, so keep an eye on that. Some people on Herceptin only continue to have some depressed blood counts, track that as well.

Jan 12, 2021 10:28PM Taco1946 wrote:

MsMurphy - I had no SE's from Herceptin alone and was able to manage the 30 minute drip. Echos will be every 3 months though as one know SE of H is heart problems. The headaches I had I am certain were from the AI's, not the Herceptin. Every MO seems to have a favorite AI but ask for another if you have problems with the first one.

Jan 20, 2021 03:43PM Redcanoe wrote:

hi fellow triple positives. I started chemo 8 days ago and so far I am doing okay. I had a full body ct on Friday and I am still waiting on the results so I have lots of anxiety about that. I went into a pretty deep depression when my surgery pathology came back but I've been on an antidepressant for a few weeks now and it is helping a lot. To be honest, the mental battle has been way harder than the surgery or the chemo. To make matters harder, I have had to travel for treatment and isolate for 14 days when I return. I've missed 6 weeks of my kid's lives since November. I shouldn't need to travel again now for a few months hopefully. My kids are so little. My ex came by with our youngest to see me through a window and my poor baby was crying and begging to come in, he couldn't even look at me. He is only 3. I gave him a present of a paw patrol coloring book and then he cheered up but I dont think we can have another visit like that again :( I miss my kids so much. My girls are 11, 8 and 5. My oldest calls me every day and that has been so great. She is very scared and I really want to promise her everything is going to be okay. I at least want to get to a point where I believe i am going to be okay and I am hoping a clear CT will bring me that peace. The prognosis is really good as long as this stupid cancer hasn't spread yet.

Jan 21, 2021 11:59AM Redcanoe wrote:

My oncologist called this morning and said that the CT was clear of metastatic disease. He did say that there were a few 3 mm spots on my lungs that looked more like unexpelled mucous than malignancy but he wants to do another CT in 9 months. My understanding from obsessively reading posts on this site that spots on lungs are a fairly common finding and usually benign so I'm not going to worry about it and I am taking it as a win that at the end of all this treatment, I'll get another CT for my piece of mind.