TRIPLE POSITIVE GROUP
Comments
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Perhaps there are different guidelines in my country? Regardless, I will keep in mind that more is not always better as mentioned above.
I am terribly anxious about this decision and everyone's comments reassures me a little. So, thank you.0 -
Very true, i always forget that protocols and insurance are different. I would ask why one MO wants you to have Perjeta and the other doesn't. Perjeta can be given with both regimen.
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My guess on the Perjeta question is it is being offered neoadjuvently due to being considered high risk because of age, rather than the other clinical features of tumor size and nodal status. The P recommendation is also from the same MO that is advocating the slightly more aggressive chemo regimen.
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Hi darksparks,
I thought I would chime in here as we have similar diagnosis. I met with my oncologist prior to my surgery and based on the pathology from the biopsy, he initially thought I would follow the regime suggested by your first doctor. At that time, I was told that I was stage 1B, tumor about 7mm, grade 3. After surgery, my stage stayed the same but the tumor was slightly bigger than thought, 1cm. Because of the change in size, my oncologist changed his mind and is having me do TCH, every 3 weeks for 6 rounds and then continuing with the herceptin for a year and addingin hormone therapy. I'm going in for my 5th treatment Friday and so excited to be almost done. Most of the SE have been tolerable, especially as I know how to manege them at this point. While it still is peach fuzz, my hair is already growing back in (I didn't bother cold capping). I haven't had any neuropathy and while super exhausted, I've been able to continue working full-time. Both the surgeon and tbe oncologist have also told me that because I've gone with the most aggressive treatment options,my chance of recurrence is very slim.
Hope my experience helps with some of your questions. Good luck to you.
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Hey MsMurphy, so glad to hear that you're almost done with your chemo and that it was manageable. I look forward to counting down the cycles myself.
I've decided to go with TCH. My MO explained her rationale for picking this treatment over any of the others and it made a lot of sense to me. She also showed me the Aphinity trial findings and explained why she thinks Perjeta would not be helpful for me. She was quite disapproving of the other MO for suggesting Perjeta but she's willing to give it to me if I insist... Which I don't think I will.
I'll be starting my chemo tomorrow. I feel so unprepared for this! She even suggested starting it today but I wanted to at least have the day to prepare myself mentally. I will be cold capping and using the iced mittens/gloves. She did mention that she observed that the cold cap seems more effective for her Caucasian patients than her Asian patients (I'm ethnic Chinese), but I want to do whatever I can to try and reduce the side effects of chemo. Maybe I'll get lucky!
I took a jab in my tummy to (I believe?) suppress my ovaries, and got an ECG/ultrasound (?). The doctor said some worrying things like one of my valves appearing somewhat thick for my age and asked about my blood pressure upon seeing the size of what I think is my left atrium. The latter was alarming to me but he said it should not be an issue. I don't think I have high blood pressure? I always thought I was on the lower side. At the very least none of the nurses who took my BP (and it was taken a lot lately) said that I had high BP. Worrier that I am though, I might want to ask for further clarification on it.
Finally, they gave me something to get ahead of any allergic reaction especially since I seem to be having mild eczema problems at the moment. I also met a volunteer support BC survivor (she's triple negative and 25yrs cancer free!) who spent some time talking to me to make me feel more at ease. She's been introducing me to all the local support groups and telling me about all the help I can get should I need it.
And I am writing this at 3am, somewhat unable to sleep from anxiety but I think it's time to try to sleep once again. Wish me luck! I plan to kick some cancer ass.
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Darksparks: I am glad your cancer was diagnosed early, but of course sorry you had to join this club. I can promise you no one here felt prepared for any of it! I was so afraid of my first chemo session! But you will almost certainly get enough premeds to be pretty sleepy there. At least I didn't manage any of the reading or "productive" use of the time I had planned! Be prepared with layers, as infusions suites are chilly even without cold-capping (and they are running cold liquid into you!), find out where the heated blankets are, bring some snacks in case you don't like what they have.
I didn't cold-cap because I had long, thick, curly hair, and they didn't think it would work for me, plus I hate being cold! My hair has grown back thinner and STRAIGHT! LOL. The hair I always wanted when I was young!
Hang in there. The beginning is hard with all the unknowns. But there are loads of us here who have been in your shoes, and many more who never came here or who used to come here but only ever think about cancer when they now go to their annual check ups! Hopefully before too long you will be among the group who never think about it any more (I have one friend who had triple positive 25 years ago!)
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Hope your chemo goes smoothly darksparks! Did they have you take a steroid? I take decadron the day before, day of and day after chemo and it spikes my blood pressure, gives me insomnia and makes my heart race. Was thinking it could have an effect on your ECG. With herceptin, they should monitor your heart. I think echoes every three months is the norm or at least what my oncologist requires.
Getting diagnosed is very overwhelming and hard to wrap your head around but it all will start making sense. I found it helpful to write down questions that come to me in between appointments and go over them with my oncologist. Don't be afraid to ask for clarification and make sure to take notes as it might make sense while you are sitting in the office but gets confusing after when you try to recall it later. You'll find a pattern starts with chemo and quickly figure out what to expect. For me, the first 3-4 days I mostly want to sleep and have little energy. About a week and half after treatment, my face will be both incredibly dry and break out for a couple of days. A few days before the next treatment, I feel great but yet cry over really dumb things. My tongue always feels burnt and throws off my taste. Keeping hydrated is important but can be hard so if you find something that taste good, stock up. For me it is Hint water and milk. Others recommend coconut water. I keep a variety of foods around as I never know what my tummy will want. Generally salty foods seem to be most palatable. You might find your GI a mess, one day constipation, the next diarrhea. I've found what foods work for me and this round did not need any over the counter meds at all but don't be afraid to use them. The SE's can be frustrating but it is also temporary. You`ll get through it.
Just remember you aren't alone and this is a good place for 3am rants and lots of support. Make sure to use your personal supports too. I have a couple of girlfriends and a sister who are always there when I want to whine and are also ready to make me laugh and find the humor in all this.
Oh, I want to add that when I lost my body hair, the eczema I had on my upper arms went away and my skin all over is baby soft. It is also really great to not have to shave. Hopefully your eczema will clear up too.
Good luck! We are here for you and cheering you on.
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I had taxotere, carboplatin and herceptin over 10 year ago. And I also was prescribed decadron for day before, day of and a day or so after. In addition I was prescribed Ativan to help with the sleeplessness and it was very helpful. So you might want to think about asking about your onc prescribing it. Ativan also has some neausea reducing properties. Good luck!
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I took dexamethasone the day before chemo, but not before the ECG. The doctor wrote in the report that my left atrium is normal so I'm not sure what happened. Maybe I just have a long heart. I was prescribed lorazepam to help with insomnia but I have not needed it so far. I'll be taking more dexamethasone tonight and tomorrow morning to help with the nausea... Which thankfully isn't too bad so far. They have given me even stronger nausea meds in case the dexamethasone isn't enough but I haven't had to turn to those yet. I hope it stays that way! I definitely am fatigued. Been trying hard to keep my fluid intake up. I'm told carboplatin requires me to take in even more fluids than usual.
I'm also told day 3 might be when it starts to feel worse so I'm a little worried
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Hi all,
Just doing a check-in! Celebrating 10 years with Special K (knock on wood so I don't curse myself)
Toque-I did the same trial that Special K did, only I was in the other arm. (AE-37 right special K?) I haven't looked at updated results for a hot minute as I thought they had found there wasn't a dramatically positive result. However, just looking now, it seems like it is still in the mix of things.
I also take Metformin to prevent recurrence. I started out in the study until they kicked me out due to the fact that one side of tumor was just a teeny bit small. My PCP liked reading about the concept and said he was comfortable prescribing it and following. Plus, diabetes runs in my family so I figured I was doomed anyway lol. My oncologist told me last time that there are positive things with that especially for Her2+ folks.
Darksparks, I interviewed three oncologists. One wanted me to do the Adriamycin combo. The other two thought that was overkill and recommended taxol weekly for 12 weeks and herceptin for a year. I did the taxol one. Lots has changed though and I have to admit, I haven't followed everything totally closely.
I took a tape recorder to some of my appointments so I could go back and listen. Amazing what I would miss. And to this day, I have a notes folder on my phone that I add questions to when I see something to ask my onc.
Got my second Covid vaccine yesterday. I told my husband I feel like I am back on chemo today. All my joints ache, my feet are freezing, low grade fever, and tired lol. Hoping its better tomorrow!
Keep the faith everyone! Lost of positive vibes sent your way.
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Congratulations, Fluffqueen! It's always nice to hear from survivors checking in on their anniversary. Enjoy your day!
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fluff - hey girl! Ten years, woot woot! I am also on Metformin, my MO thinks enough out of the box to feel that it has value for me even though I am not diabetic. I take an 81mg aspirin as well for the same reason. My second vaccine is 4/1, I had no quantifiable side effects from the first (Pfizer) which I was greatly relieved about because I am allergic to everything. It has been challenging for my PS - I am allergic to many antibiotics, adhesives, topical irrigant used in surgery, etc. I had my routine MO appt and he strongly felt I needed to be vaccinated. I am now on the low end of WBC, MO feels that is just how I will be going forward, but for the last year it has been worrisome in light of Covid. I don't turn 65 until Oct, so he signed the certification for "extreme vulnerability" so I could get in. FL just opened 60-64 up so I would have gotten in the queue regardless, but one of the med centers in the area did a two day event for the vulnerable population locally and invited me to come. Yay!
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fluffqueen!
Congrats on 10 years! I always love to hear how people are doing. I'll be seven years out in July. Just got my first shot of the Pfizer vaccine last week -- made my arm sore but that was it. (The tribes in OK are vaccinating everyone.) Wondering how the second shot will feel.....
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ET - my DH had Pfizer (vaccinated at work - military) and had no issues with his second. DS had Moderna and his second vaccination made him ill, same with my BIL. Have not heard too many second shot reactions from Pfizer. You and I are on the same schedule - fingers crossed for an easy time for both ofnus
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my mom and I both got our 2nd Moderna Shot last week. No major SE, nothing like inwas expecting. Some chills, a headache and woke up during the night with sweats.
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I had my second moderna dose on Saturday. I am mid chemo but my oncologist strongly recommended it. I was so sick yesterday, had a fever of 104 that would go down to 102 with Advil for about 6 hours before hitting 104 again. Had to go to the ER, my neutrophil count was good and they agreed it was probably from the vaccine. No fever today, still have a headache and sleeping lots.
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I read data to date (yesterday) for both Pfizer and Moderna -- they really have the same percentage (possibly lower for Moderna!) of reported side effects in all categories except for the sore arm. Which is why I got mine in my hind quarters
In general, folks who are older have fewer side effects than those who are younger, and those who have had COVID previously, including asymptomatic cases, get pretty wholloped. Not so unexpected. I almost certainly had one of the first cases of COVID in my area (long story, I know how I was exposed but testing was EXTREMELY limited then but Onc and others who cared for me 100% sure it was COVID) and I got hit hard by both first and second doses. So, so, so worth it though!0 -
Hello - I was hoping someone could help me understand/clarify a conversation I just had with the person who called confirming my 11th Herceptin treatment tomorrow. She stated that I would not be receiving an infusion, but an injection. Then she told me that the breast nurse that was standing beside her told me that she shouldn't have told me this because it was not definite that I would be receiving an injection instead of an infusion. I asked her what she meant by this and she said that it was coming down the line. I had previously reached out to someone on this forum when I was first diagnosed who went through this in 2017, but she was from Sweden. She told me she was receiving a shot instead of an infusion. Would this be the same thing? Has it been approved in the US? Has anyone else received an injection rather than an infusion. Should I be nervous? Is this the same drug? Different side effects? I had to fight to receive Herceptin instead of a biosimilar. My head is spinning again. I had an appointment with my MO last Tuesday and she did not mention this.
Interesting about the Metformin. I am wondering if I should ask for this too.
Was also called to schedule COVID vaccine, but I have decided to wait until after I am finished the 13 weeks of Herceptin. I'm so indecisive about this and not sure what the answer is. I recently read an article that said the vaccine, while receiving targeted therapy, may not be as effective. I feel like it's been difficult to go through this during COVID. So confusing.
Thanks for any clarity or advice.
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yes, a shot has been approved in place of the infusion. My understanding is that it is becoming more common. It sounds great to me! Wish we had it in Canada!
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freaking about my triple positive status. Lumpectomy today. Would love to hear from other triple positive people
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oh wow, I didn't know they finally approved the Herceptin shot. I asked about it when I first started last January and I don't think it was available in the US.
@Boxingmama - It is scary but, there are a ton of treatments available to us. We have Herceptin, Perjeta, Kadcyla, Nerlynx, Tamoxifen, AIs there's also several vaccine studies for HER2+ (that include Triple+).
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Hi Boxing Mama,
So sorry you have joined us here, but morrigan is right, there are loads of treatments now that didn't exist even a decade ago. Treatment sucks at times, but we are still here! The first month is completely head-spinningly overwhelming, but if you have any questions or just need a virtual hug from folks who understand, we are here.
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PJAL....I’ve lurked here but haven’t formally introduced myself. I was diagnosed er/pr + her2- fish 2/20/20. Did AC-T because we found it in a node during my initial appt with the breast surgeon. I also have the PALB2 genetic mutation...for awhile it was one fun surprise after another. I had a bilateral mastectomy and skin sparing/nipple sparing direct to implant reconstruction. I knew rads was next when I got the news my pathology from surgery was Er/pr+ her2 + fish. Needless to say we were all surprised and I was devastated. They said a change is rare but can happen.
I had a good response from chemo but not pcr. The decision was I would do Herceptin/Perjeta for a year. I started in October with the subcutaneous injection. The drug I’m getting is phesgo. It’s injected in my thigh over 6 minutes and then I wait for 15 to make sure there is no reaction...in and out. They said the most common side effect is diarrhea (which is usually the Perjeta) and maybe a skin rash. I’ve had no issues. It’s quick and easy and I don’t have any side effects I notice. They still do the echo every 3 months because of the Herceptin. I’m so happy I have that option. I can totally understand where changing is scary but I’m happy with the injection.
Let me know if you have any questions
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BoxingMamma - the first few months are awful no matter what. So many decisions to make and information to deal with. Treatment for TP is only getting better though and everyone will share their experiences. Your tumor was caught early. Come here often with your questions. As soon as you get your treatment plan, look for other blogs as well. I'm guessing you will be getting Taxol and Herceptin like I did although even in the four plus years since I was diagnosed, there have been changes (like giving Herceptin by injection rather than infusion). After you have a chemo plan, people can help you manage side effects and fears. I also joined a group "starting chemo on _____"). Those ladies were a lifeline even though we had different diagnoses and life experiences. We laughed and cried together and still Facebook. Stay close. You can do this.
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I was ER/PR+ Her2- at the start with the biopsy. But my lumpectomy surgery pathology came back Triple positive. It seemed like the first staining was light as seen in the positive control so. Her2 was possibly not picked up. But since surgery pathology came up equivocal FISH testing was done that clearly indicated the number of copies of Her2 amplified. But being Her2+ opens up a lot of treatment options I was told.
I just finished my last round (6) of TCHP yesterday and now waiting for radiation next of the local node and breast and continue on Herceptin till October.
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boxingmama - I was treated ten years ago when many of the newer drugs had not been approved yet. I had 6 TCH, then Herceptin only for the balance of the year. I had a tumor that was close to 3cm and I was node positive - but I am still here. Treatment for triple positive is a marathon, not a sprint, but the outcomes have continuously improved over time. If you have questions please ask them here - the folks on this thread are knowledgeable, helpful, and supportive!
For those whose pathology changed after surgery it is also good to remember that tumors are not homogenous - it is always possible that your biopsy sample was from an area of your tumor that did not express Her2+ as strongly as the areas examined at the time of the surgical pathology, which is always more complete. Surprises in cancerland are not usually fun, but the good news is that the add on of Herceptin and/or other targeted therapies is available and will benefit!
hopeful - yay for the last chemo!
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hnsquared - Thank you for information about the injection. I did have the infusion instead of the injection and will continue with the infusions until the end of treatment. The nurse thoroughly explained the injection and the drug. They are now using this too, but it wasn't available when I started and they will not change since I'm almost done. I think the person clearing me for my appointment was excited about it, with good reason. After the nurse explained it, I had a chance to read the studies and I wish it was available when I first started. I was also diagnosed in 2/2020, had surgery and began treatment in the beginning of May. Thank you again for explaining.
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I wouldn't think of finding that your tumor is HER2+ as bad news, since there are so many effective treatments for this aspect of it, and more constantly coming. Not having a complete response is also very common for ER+. Hang in there. I sympathize with being unsettled with the surprises, though....not fun!
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Nice to see everyone who helped me so much and to be celebrating exactly 1 year since finishing Herceptin, yey! I had it via infusion at first with Taxol for my treatment at home in the US, then back to the UK (for work) & had the rest of the year regimen with the shots. They are definitely interchangeable methods though the formulations are obviously different. Shots are much quicker though they hurt enough, that every other shot now - flu etc - seems like nothing. Then again 2-3 mins of burning is a plus vs time in that infusion chair so I wasn't complaining. So overall I recommend the shots!
I'm now back on Tamoxifen after a brief period switched to Letrozole but I had such a bad time with it with no improvement to the cramping & constant pain, my MO agreed we should go back to tamoxifen. I was a bit concerned because of the slightly better performance of Letrozole but my MO said it was de minimus given my stage and not as applicable given I was pre-menopausal when diagnosed, and only post now, so the studies generally don't cover that life change anyway.
Since being on Tamoxifen, I've had a first time reading of a pre-diabetes / elevated blood sugar and it's never happened before, tho there is some family history of diabetes. So I'm really interested in the Metformin - what dosage are those of you getting it on? How has it been? I am seeing my MO at the end of this week and trying to gather info to ask about it as it seems for many reasons it might be worthwhile for me.
One last is that the hot flashes Tamoxifen seems to give me or worsen don’t seem to ever go away - my MO is having me try gabapentin for it but so far not much impact. But I’ll take them over the constant cramps and hand issues I had on Letrozole, so pick your poison seems apt for this one
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I am on tamoxifen and about to complete my first full month. The aches and pains have really intensified this past week and all my bones are popping. Everything from my neck and spine to my knees and ankles. Has anyone had this happen? I am also on my 4th of 13 herceptin infusions next week. Any insight would be greatly appreciated. Thank you!
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