TRIPLE POSITIVE GROUP
Comments
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Hello All,
I had my first tchp cycle on 11/17. It wasn’t fun that’s for sure. I have not heard a peep at all from my team since my cycle. I did have a PET scan on 11/23 and still not a peep. Is this normal or do you have more contact with your team?
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Phelps128 - I saw my oncologist or oncologist NP every visit (every 3 weeks)so they went over any test results during the visit. When do you see your oncologist next?
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oh okay! I thought that they might call with my PET scan results, since the scan was done to determine if the cancer spread outside lymph nodes. My next apt will be for Cycle 2, I believe on Dec. 8th.
I just feel a little lost I guess.
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Phelps128 - call them for test results rather than waiting. They may discuss with you ahead of time.
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I saw my team weekly. I went in for blood work every week and would usually do a teleconference on the non treatment weeks.
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Hi everyone! Checking in to see how we are all doing.
I am offering up either some information for you all to watch out for, or to say please say prayers. Not sure which.
My plastic surgeon orders an MRI (no dye) every two years to check the implants. I had the MRI on the 19th. Implants are fine. However, they called out the following.
There is cortical thickening of a right axillary lymph node measuring up to 0.7 cm in thickness. Right level 1, 2, and 3 lymph nodes are increased when compared to the prior examination. For example there is a right level 3 lymph node measuring 1.1 cm.
Small left axillary lymph nodes are noted without pathologic enlargement or suspicious cortical thickening.
IMPRESSION:
1. Intact bilateral subpectoral silicone implants.
2. Prominent right axillary lymph nodes, possibly accentuated by MR technique, for which dedicated right axillary ultrasound is recommended with correlation with recent vaccination.
3. Enlarged right level 3 axillary lymph node for which correlation with the recent vaccination is recommended. If the patient has had a recent right code with vaccination, a short-term follow-up examination with a chest CT in 3 months is recommended. If the patient has not had a recent Covid with vaccination, a PET/CT is recommended.I had my Covid Booster on October 28. Apparently it is is a thing that is messing up breast imaging and causing unnecessary testing.
So my Onc. called immediately said she believes it is vaccine related, but I am having an ultrasound on the 16th to see if things have improved. PS said the same. Breast surgeon called to say don't freak out.
So either I should have waited on the MRI, or I am going to be losing a lot of valuable time if this is something else that is really bad.
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thanks everyone for the replies!
morrigan_25: where did you go for treatment? I notice that you are in NJ. I’m in PA. Thanks!!0 -
Hi, Phelps128, this was me in March. I'm still in it with you, just several months ahead of you. You are strong, too, even if you don't feel like it right now. I've realized that I can feel fragile and strong at the same time. Strength comes in allowing yourself to feel what you feel and continuing to put one foot in front of the other. Reach out if you need support. I'm not on here too often, because I often find that I get overwhelmed (even though people are incredibly supportive!!!)--it's just that I end up going down the rabbit hole and making myself more worried than I need to be (that's why I haven't been on social media in years). But I think I'll get an email if you reach out to me directly.
So, I did TCHP for 6 infusions, then a lumpectomy, then 6 weeks of radiation, and now I'm on Kadcyla (I've had 4 or 5 infusions--I've lost track of the number!), and just got my first Lupron shot. I start an AI in 3 weeks or so. (I'm not quite in menopause yet but going on Tamoxifen would interact with my psych meds, and I really don't want to change them!) TCHP was hell for me, but I'm SO glad that I got it done with first. It definitely got rid of all the cancer in my tumor completely and got rid of the cancer in 5 out of 6 lymph nodes. The surgery and radiation were fine--just a bit of discomfort. Kadcyla is now starting to bother me (well, we're trying to figure out if my GI symptoms are because of it--seeing a gastroenterologist tomorrow and then I'll decide with my team on Friday if I should continue on Kadcyla or just got to Herceptin (with Perjeta? Not sure yet of the protocol). Last week was the first time that my WBC were too low for my oncologist to give me the Kadcyla infusion. My sudden onset of GI issues like the ones I had on TCHP have caused me to lose 12 lbs in 3 weeks. Something is definitely going on with me, and I'm hoping to get some relief soon. As I write all of this, I can't even believe how much I've been through since March! As you know more about what your treatment process will be, feel free to share it here.
I'll be thinking of you as you make your way through whatever ends up being your process.
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Has anyone had GI issues while on Kadcyla?? I'm only on the 4th or 5th infusion, and a month ago I started getting the same symptoms that I had on TCHP (nausea, cramps, constipation, no appetite, etc.). I lost 12 lbs in 3 weeks, and this last week was the first time my WBC was too low to get the Kadcyla infusion. I'm meeting with an gastroenterologist tomorrow, hoping he can figure out if this is related to the Kadcyla vs. being something else. And if he can't figure out why I'm having these issues, I'm hoping he can help reduce the symptoms. My onc is leaning toward taking me off the Kadcyla and just having me on the Herceptin (and maybe Perjeta??). Would love to hear if anyone has had issues with the Kadcyla and what you did! Thanks!!
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Sorry to hear fluffqueen01. It sounds like your team is on it and hopefully related to your vaccine booster! Please keep us updated.
I don't have answers for you Jam, but again- sorry you had such a poor reaction. 12lbs is a lot.
Phelps- Hope your PET scan turns out well! I only speak to my team every round - so every 3 taxol doses. I have online access to most test though so I can see what they say. Im glad you will call for results.
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"had my Covid Booster on October 28. Apparently it is is a thing that is messing up breast imaging and causing unnecessary testing."
@Fluffqueen - It's a known issue. In fact places in NJ are now documenting when you get any vaccine (COVID, Flu, Shingles, etc) and which arm. Since COVID Vaccine is setting off imagining machines and looking like cancer.
I hope this turns out to be the Vaccine. My understanding is it can set off imagining machines for 4-6 weeks. However x it's best to get the extra tests in to be safe.
@Phelps - I did my treatment at a place close to me, Oncology and Hematology in Mountain Lakes. I got the same treatment plan from them, Morristown Memorial and SMG but, I liked the smaller center. I did end up going down to RWJ/Rutgers (NCI) for my Vaccine Trial, so I ended up having to deal with a hospital anyway 😂
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@JamG: Yes, I actually started with horrible constipation and lack of appetite during TCHP (yes, even on Perjata), then it improved some but on Kadcyla my appetite was terrible, and the constipation continued, though not as painfully as during TCHP. My GI system at 1 months post last Kadcyla is still not what I would call normal, but much much better.
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Yeslama, this is so validating!! My onc keeps saying it’s rare but whatever the gastroenterologist looked up yesterday had GI side effect rates on Kadcyla at around 20%. That’s not rare in my mind. It’s nice to hear that you made it through and that you are feeling somewhat better. My gastroenterologist said there’s a lot he can prescribe to help manage all these symptoms, and my onc is going to reduce the amount of Kadcyla they give me on Friday to see if that helps any. I feel a bit like a lab experiment now. Thanks so much for sharing your experience. It’s nice to know I’m not the only one. -
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I have to say I haven't been quite this paranoid for awhile for sure.
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fluff queen: It’s definitely valid to feel scared. Although it sounds like it’s likely your booster vaccine working its magic, it always scary when you have had cancer. Keeping my fingers crossed for you for good news! And yeah boosters!
I was lucky to get my third booster a few weeks before I started chemo and I had blood work done three days after. My lymphocytes were in my boots and I was scared it was something going on. Turns out it was my booster. My flu shot dropped my neutrophils too when I got it during chemo. I’ve never had so much blood work done so I had no idea those would happen. I was scared with both of them. First I panicked and thought maybe I had breast lymphoma or something weird, and when my neutrophils dropped I worried I was developing neutropenia from chemo. Thank goodness it was just both vaccines! I also feel more confident they worked since I didn’t get much side effects from either
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fluff - keeping fingers crossed it is just your booster!
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I asked my MO about sub-q vs. IV Herceptin and shared my hesitancy because the sub-q is newer and doesn't have as much of a long-term track record, and she said it has been used in Europe longer than in the US because people in the rest of the world don't implant ports as much as we do, and I shouldn't worry about that. I see that the EU Medicines Agency approved it in 2013 vs. 2019 for the FDA, but to me 6 years is not long. Are there any studies with more data than that? All I see is the HannaH study. I'm very interested in seeing if newly discovered medicines are right for me (e.g. Nerlynx) but when it's a substitute with a different delivery method for some reason I'm hesitant. My MO said it's up to me (and I suppose my insurance). Short injections would definitely be more convenient but I am not necessarily looking for convenience here.
I had a cat with a virus and the available treatment was an older injectable antiviral or a newer pill formulation. Injection was very painful and cat was easy to pill so I chose the pills. We discovered when it was already too late that they didn't absorb as well through that route in my particular cat, and the cat died. Obviously the situations aren't comparable but it's what I think about. Lots to ponder and with 5 treatments left it feels like this stuff is looming. I also got the name of the radiation oncologist and the go ahead to set up an initial consult. Yikes!
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sorry haven’t posted to say thank you to all of your replies! I started to feel better from my first tchp cycle for the last 10 days and spent that time with my son and husband. So thank you again...appreciate all of the response.
fluff- I hope you are doing well along with everyone else!
My husband and I made a Rudolph Christmas tree in the week that I was feeling better. My son Kaden
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Pherlp128 - absolutely adorable!
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I hope all you are doing better.
Someone send me this link taking about new potential cures. Hopefully will be soon. What do you think about what is said ?
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That's so cute!!
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Phelps128, that's so cute!!
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i was taking calcium and vitamin D . Still I got diagnosed with osteoporosis. My doc prescribed a med to prevent further loss but I am worried about things I read. Hopefully some of you had overcome osteoporosis. . Any advise how to improve things besides meds
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Margun,
I also had bone loss. My bone loss was due to Aromasin + Zoladex, but my bone density has improved since I've been on Prolia (which is a med). Hope yours improves soon!
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Hi Ladies!
This forum has been really helpful for me. So thank you all so much for that. I finished chemo in October and had surgery last week. The pathology of the tumor changed. I’m curious if this has happened to anyone else? The grade was lowered, er% was higher and my her2 changed to negative as well as my ki67 being initially a 30 is down to a 5. I’m confused and my surgeon was the most surprised about my her2 status
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Mmcking3, my surgical path was slightly different from my biopsy path - biopsy stated my grade as 3; surgical path listed it as 2. I'm guessing it's between 2 and 3. That's the only thing that changed, though, but I did chemo after surgery, not before. I would be confused by so many differences, too, but could the Ki67 (measure of cell division) be due to the chemo hitting the fastest growing cells, and leaving the stragglers alone? This could maybe be the same phenomenon for the HER2+ cells, as they tend to be more aggressive, but I would have expected the need for Herceptin to really hit those. I'm just guessing here. Could be the same thing with the ER%, idk. What was your tumor's response to chemo?
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Thanks Big Peaches and NSBrown54!
Big Peaches- I went back and reread everyone stories (hundred and hundreds of pages:). I’ve been following your story and I am so happy that you are doing well❤️Well wishes to everyone
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mmcking3 - looks to me like the chemo worked in shrinking the tumor although I too am surprised in the HR2 disappearing.
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AMG, I assumed the same for chemo and herceptin killing off the aggressive cells first.It was a 40% response not great. My surgeon was surprised which made me more curious. I asked her and my MO if it was more likely I had two different cancers, the original test was incorrect or four rounds of TCH killed all of the aggressive cells. Neither had a real opinion. I guess I’m a bit annoyed too that I ignored my gut in the beginning to do surgery first.
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Hi All,
Me again:).
I am on Day 10 of Cycle 2 TCHP. I just noticed I have a swollen lymph node on the right side of my neck (cancer is in left side). I believe it is my tonsillar LN, but maybe cervical. Is this something that I should have checked right away or something that I should watch for a week then call?
Thank you!!!0
