TRIPLE POSITIVE GROUP
Comments
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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
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Hi rozem - My treatment plan has been TCHP for the first 6 chemo treatments, surgery letrozole (oral chemo), which I started after surgery, followed by Kanjinti (herceptin bio similar) and perjeta for 1 year. I have no node involvement, so no radiation.
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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.
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hey SK!!!! so nice to "see" you, were the old timers here !!! so much has changed since we were diagnosed, i cant believe it. So much more in targeted treatments which is amazing. I know its approved here in Canada for early stage but wasn't sure of the parameters - they may be different in the US but was curious what they are with you guys
thank you NSBrown for your treatment info
interesting as well is the bio similar Herceptin???? I am certainly not an expert but i guess the patent runs out then other companies can produce the drug - is this now being routinely used ?
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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!
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rozem - here’s a link to FDA page about bio similars. https://www.fda.gov/drugs/therapeutic-biologics-applications-bla/biosimilars
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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.
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hi SpecialK - The answer I got back on surgery was not during the initial vaccine (either first 6 weeks for DC-1 or first 9 weeks for WOKVAC. I can do it after that but not within 2 weeks of the booster shots. I can totally work around that, I'm not fixed on the exchange date.
I'm going tomorrow for an Echo and Bloodwork. That's the final screening step to see if I qualify for the study.
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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.
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SpecialK and Taco, thank you so much for that reassurance! I can definitely face 3 months of feeling low better than a year. I will be starting hormone therapy once the chemo is done but not sure what that is yet. I'm a bit nervous as I have a history of not tolerating birth control well but I'll cross that bridge when it is time.
My first herceptin infusion was 90 minutes and the last one an hour. I'm going to be sure to ask the next time what their protocol is on just it. The oncology nurses have been such a wealth of information! I like the oncologist doctor and trust him but the nurses make it so much more understandable and easier to digest and are far less intimidating.
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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.0 -
Thank you for the update RedCanoe! You have been through a lot already! And with the travel and quarantine your path is extra hard. But I am fairly certain all of us here will agree that the emotional roller coaster is most steep and with the sharpest turns in the beginning. The chemo is rough, but we all got through it one day at a time and so will you! It sounds like now you will be able to get your infusions locally? Hang in there!
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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.
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Good news, Redcanoe! Yes, spots on lungs can be anything. My husband has spots on his lungs and they're nothing. He's been scanned multiple times and they never grow; they're just "there." I'm sorry to hear about how much time you've lost with your kids. That sucks. Hope your chemo goes well, and that you don't have to keep traveling and quarantining, traveling, quarantining. ((Hugs))
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My mother has pin-point spots on her lungs (found same time they found a tumor on her kidney - happy accident). She gets a CT every year for the last 5 years to make sure they don't grow. They're almost certain it's a result of pneumonia but, they keep an eye on it to be safe
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Oh yes the oncologist also confirmed officially that the rest of my chemo can be done locally and I have no scheduled medical travel or isolations hopefully until radiation. That is going to be tough but at least I'll have lots of time to prepare myself and the kids. Maybe I'll find a way to bring them with me.
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jumpship - here is a link to BCI testing and results for ER+/Her2+ patients. My read on the results is that a higher percentage of Her2+ patients that have this test done do fall into the higher risk of late recurrence category, but more also seem to benefit from extended use of anti-hormonal therapy than ER+/Her2- patients. I had the BCI test done at the five year point and unfortunately fell into the 10% of testers who had high risk of recurrence, but low benefit of extended anti-hormonal therapy. My oncologist did encourage me to continue if I could handle the side effects and I completed 7.5 years.
https://ascopubs.org/doi/abs/10.1200/jco.2015.33.15_suppl.595
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I just had my 2nd HP treatment. The first one was only herceptin (kajinti). I had no side effects. I woke up fine this morning but am getting more lethargic as the day progresses. Is this normal? Are the HP treatments cumulative like TCHP? Other than being a little anemic my blood work is fine
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Well, I have had to shave my head to 1/4 inch long due to hair loss. My sister in law did it for me and said there was noticeable hair regrowth already. My last treatment of the 6 rounds of Enhertu is on Feb 4th and we shall see what my cancer markers are telling us. The last number was 14 so we shall see if it has continued to go down.
Angelsgal
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Thanks for the update angelsgal. Sounds very positive!
I just shaved my hair today too. I have my second round of TCH on Tuesday and hair started coming out on Wednesday evening.
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I shaved my head a few weeks ago and have been excited to have some growth coming back lately. I mentioned it to the oncologist today and he burst my excitement bubble by telling me to not be surprised if it falls back out/regrows again until chemo is done.
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I'm getting my covid-19 vax tomorrow. My oncologist really wants me to get it. It will be three days before my second dose of TCH
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congrats on having the opportunity! I can't get any appointment (all booked). Thankfully I was able to get my mom one in her county
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morrigan,
My sister's in-laws in New Jersey have been having the same problem. Thankfully, my parents live in Connecticut, so they've already gotten Dose #1 of the Moderna vaccine.
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I got my first shot of the vaccine last Monday. Very lucky as my employer got approval since we employ home health caregivers which puts all of us in the office at risk. My arm was a little sore for a day and I felt even more tired than usual but that was it. Hope you all get yours soon.
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I am pretty upset. Round two of TCH is tomorrow and my ALT went from 22 to 136 since first round. My taxotere is being reduced by 20%. Has this happened to anyone? What happens if I cant tolerate the taxotere?
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redcanoe - dose reductions are pretty common, try not to stress. Taxotere is a fairly intense drug, so there is the possibility you can be switched to Taxol if your liver values continue to be impacted. Something to consider is that the first infusion contains loading doses, which are larger than the subsequent ones. Your liver values may stabilize and not continue to drop further since the dose will be smaller and also reduced by a percentage. It is also not uncommon to have fluctuation in liver values - chemotherapeutic drugs are either filtered by the kidneys or the liver, depending on the drug. This is why function of these organs is checked throughout chemo, and most oncologists expect to see these changes. The approach if there is concern about too big a change is to do exactly what your MO did though - reduce the dose and see how you do. Hang in there.
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thank you specialk. I will try not to worry and hope it resolves before round three.
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My MO dropped my Carboplatin by 10% for TCHP #5 but, I went back to full dose to finish the treatment.
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I am sorry you had to get it as shots! That is why I love my port, even though so many people hate them. I just don't want to be poked so much!
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