TRIPLE POSITIVE GROUP
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wahoomama87, that's awesome news
hope the shrinkage continues!Annie60, the insomnia/2 hour sleeps are winning at the moment for me, have tried melatonin, benadrly, ambien, nothing is getting to the level i need to fall asleep well and stay asleep. I hope you find something that works. I will continue to see if i can find something that work for me
Wheatscapes, I didn't know too much caused insomnia, maybe I should try less again and see if that helps, with extra if it works and I wake up after 2 hours..... guess i know what i am trying tonight.
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Hi there! I have not posted anything here but have been closely following since I started chemo in March. Happy to say I’m done!! 4 x TCH with Herceptin to follow for the remaining year.
My last round was on June 2 and just wondering what everyone who has finished has their recovery been like. I know we are all snowflakes & no 2 are the same but curious as to what recovery was like. I am currently experiencing the thigh and upper arm muscle weakness which makes simple tasks feel like an Olympic sport... I also gained 20lbs. No idea how that happened but according to the scale & jeans it did. Think that a lot of that 20lbs is fluid retention as I seem to bloat up as the day goes on. I have been trying to be more mobile & active but these lead legs makes it hard. I have also just started on a b-complex supplement.
Also any ideas on what to expect with Herceptin alone. Hoping it’s a lot more friendlier than chemo was!
Thanks everyone so much and hoping everyone is doing as well as can be on this crazy ride
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RedKittty,
Your diagnosis is similar to mine, at least in terms of stage and presentation. My cancer was 3.5cm when diagnosed, with one confirmed lymph node, also grade 3, and I also had residual disease after surgery, including in the one node. Hope you are having a good recovery from the surgery. Some thoughts:
- In the pathology after chemo and surgery, was your cancer still grade 3? Mine went down to grade 2.
- In my case, because of the residual disease, they offered me radiation, even if I had a mastectomy, not lumpectomy. Radiation decreases the chances of a recurrence in the same area.
- They did not offer me additional chemo, although I begged for it. I had Herceptin+Perjeta to complete one year and then a year of Neratinib, but all of this is for the Her2+ aspect, which was high in my case.
- I would inquire about starting hormonal treatment, have you discussed that with your doctor yet? I got an oophorectomy and I am now in aromatase inhibitors, this was an aggressive approach to attack the hormonal nature of my cancer. I was 48 at the time, already in perimenopause and I was glad to get my ovaries removed for other reasons too (mild endometriosis and regular ovary pain, had had an episode of uterine lining thickening prior to cancer and I didnt want to take Tamoxifen)
LaughingGull
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@Dup403 - I did 6 rounds of TCHP and 1 round (so far) of HP. I'm 1 month post chemo.
Most of my (presumably) Chemo related issues have cleared up including, nose bleeds, fatigue and minor neuropathy in the feet. My blood counts this week were almost back to normal.
The only issues I still have are, some muscle soreness in my thighs (feel like I've done 1000 squats) the occasional odd taste (it's 80% back) and, a minor version of that tongue/mouth issue (I had all Chemo) which I hope is just residual and, will be gone for good by my next HP dose.
I don't know if it's because I didn't get steroids (other than treatment day) but, i ended up losing 21 lbs during Chemo and gained 5 of it back in the last month 😌.
I go for my BMX tomorrow, hoping I get the all clear on pathology and sentinel nodes but, I'm preparing for bad news to be safe (easier not to get my hopes up).
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Morrigan_2575 -
Thanks for sharing about the post chemo. I have 2 more rounds to go of TCHP and then will do Herceptin (and possibly Perjeta) for a year. I'm hoping the chemo side effects are gone after I'm done with the TC part. Good luck tomorrow! I will probably have my BMX in August. So far, they see the tumor shrinking and NED visually in the lymph nodes - which is really good because there was definitely a positive one in the pre-chemo biopsy. So I'm praying also for good pathology in August. Will you have radiation, do you know? Reconstruction?
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Morrigan 2575 1000 squats sounds about right. I did take steroids, day before, day of and day after treatment which I think is where this weight has come from. I can work on losing the weight but I need my legs to do this and that’s my biggest issue right now.
I hope everything goes well for you tomorrow and am sending good thoughts your way
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@ Wahoomama - I am doing reconstruction. I will have TEs put in tomorrow and then I'll go to implants.
I don't know about Radiation. So far there's been no indication of lymph node involvement. So unless we get a surprise tomorrow I shouldn't need radiation but, I'm prepared if it happens.
@Dup403 - Thanks! good Luck
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Morrigan — will be in your pocket tomorrow with prayers all goes uneventfully with a speedy recovery. I’m doing Taxol with Herceptin but did have one solo H so I could distinguish which SEs Came from which med.
Herceptin— the real thing, not a biosimiliar, very little SE. indigestion not a problem when prescribed one daily omeprazole DR 40 mg capsule dry/runny nose. Using a nasal saline spray and saline gel/rose infused vaseline and Claritin. First echo after initial Herceptin infusion all heart function ok; will retest in a couple weeks.
Biosimiliar Kanjinti has many significant SEs — only had one infusion of it then switched to the real Herceptin.
Prayers for tomorrow’s surgery.
🌈
j
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Hi all, I am hoping for some clarity. I have triple + and would like your insight into what this means, exactly. My oncologist said its aggressive but with Herceptin and Perjeta it's somewhat of a nonissue now. What does that mean? I thought triple - was the "bad" one, but I'm starting to think differently. Aside from aggressive, is there a higher reoccurrence rate? Long term implications?
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Triple Negative is the very aggressive, very bad one. Triple Positive is more aggressive than HR+ (ER/PR+) cancer, it also has a tendency to spread which is why you almost always (always?) need Chemo. However, it's not as aggressive as TNBC.
HP does level the playing field bringing survival rates to just slightly lower than HR+ BC. There's also other targeted drugs available for HER2+ (including Triple+) BC (TDM-1/Kadcyla and Nerlynx) both are approved for early stage BC.
If HER2+ comes back it's most likely to dominos in 2 years and, if it does, it's more likely to be metastatic. However, Herceptin, Perjeta, Kadcyla and Nerlynx all lower the recurrence risks
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Thank you! That was more info than I could squeeze out of my oncologist. I believe sometimes they try to stay away from the negatives, but I'd rather know what I'm up against. Blech this is all the pits.
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Do your own research and, be your own advocate. I like my MO but, I would go in with a notebook of questions every week. Stuff I read on the Internet, stuff I found here are BCO, stuff mentioned by other cancer patients.
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morrigan - I’m 10 years out and I still have a list for every MO appointment, lol!
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Dup403--just my $0.02 on Herceptin only. Yes, it's not a chemo drug, so not many SEs but I can't say none. I had really upped my protein intake through chemo and then cut back when I was finished. I started to notice that I felt kind of funny coming out of Herceptin--almost a little drunk. I started making a point to eat meat the two nights before treatment and it helped a lot. And yeah--a runny nose for that whole year, and for a few months afterwards, but that's not a big deal. Hang in there. Schedule something super fun for yourself when you're finally finished.
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Got my Surgical Pathology back T1N1mi. Neoadjuvant got 90% of the cancer but some still remained. They also found Micrometastases in 1/3 Sentinel nodes. Not sure where I go from here, waiting on MO to follow up. I'm guessing I'll get switched to Kadcyla and will need radiation.
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morrigan,
I'm so glad to hear that 90% of your cancer was gone! It's good to know that chemo did *something.* You probably have already checked the Kadcyla thread; I'm sure that's a good source of info about residual disease.
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Hi all. Just popping in to see if anyone has heard from Andi67?
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bliss - hi! I don't recall seeing Andi67 post on this thread, at least not recently - when I checked her profile it looks like she is PR-, but did see that she posts on the stage IV Herceptin/Perjeta thread and last posted late April. Maybe someone over there has had PM contact with her?
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Hi SpecialK. You're right, she's not triple+ as I thought and I was thinking of H&P thread. Thanks for your help and I'll go there!
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Has anyone had experience with high numbers in a tumor marker blood test?Mine was high and now scans are being ordered. I am very scared.
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annie - define what you mean by high? Have you always been firmly in the range before? Are you experiencing any joint pain from anti-hormonals Most oncologists who use tumor markers look for trending results - climbing higher numbers over time as opposed to a single high result - unless the single result is markedly higher And uncharacteristic for the patient. That said, many oncologists don’t use tumor markers for early stage patients for two reasons - there are non-cancer reasons that may affect marker numbers and cause a false positive trend Or result, and for some who truly have recurrence its progression the test shows no change, so is an unreliable indicator. By the time I finished chemo my CA27/29 was double the high end of the range when it had been in the range prior to starting, and at diagnosis. I re-tested at about 30 days intervals and the number dropped, but it took several months to return inside the range. It has gone to the high end of the range several times, but I am someone that shows increases when inflammation is present - that was the issue for me right as chemo finished - and is a common situation.
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annie - best of luck on your tests, I hope this turns out to be a non issue
SpecialK - Thanks for your insight. You are a fountain of knowledge
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morrigan - aw, thanks! Using any experience I have had to provide info to someone else is a silver lining for me. How are you doing - you had surgery recently, right?
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I'm doing surprisingly well. I had surgery a week ago Friday (6/19) and I feel really good. They took my drains out this morning and, I have been doing something well post surgery that I cut my PTO in half and went back to work today.
Granted back to work is sitting on a couch with a laptop, instead of sitting on a couch with a remote control 😁
I had residual disease so I will most likely go to Kadcyla, I'll find out this week when I meet with my BS and MO. They also found micromets in the Setinel node but (if I read the Pathology report right) the 2 auxiliary nodes were clear. I'm guessing I will need radiation as well but, I won't know until Thursday.
All in all, it's not what I hoped but, the worst TCHP is over, and the Kadcyla support group i joined on Facebook seems to be mostly "this is a breeze compared it TCHP" so that's promising.
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morrigan - glad you're feeling well, that is great! Conserving PTO is good too, be careful not to overdo though. A good mantra to follow is "just because you can, doesn't mean you should" so be gentle with yourself. You are not alone with having residual disease, getting a pcr is of course what everyone wants with neoadjuvent treatment, but it is certainly not universal. The good news is that there are mop up drugs like Kadcyla available. Keep us posted, and behave!
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Morrigan - glad you are doing well! Gives me hope for my BMX in August. Why would they switch to Kadcyla from Herceptin/Perjeta? Wondering that - I already know I had one positive lymph node from by diagnosis biopsy, but I'm on TCPH.
Kris
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i had residual disease (10%) in the breast post neoadjuvant treatment. As of March 2019 the new standard is to switch from HP to Kadcyla if you have Residual Disease.
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The test, CA 27.29 was 15 in October, 2019, 34.5 in May, 2020 and 41 last week. I finished HP on January 21, 2020.
SpecialK - Thanks for the information. I feel somewhat better.
Morrigan - I am so glad you are doing well.
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Morrigan - gotcha. My MO hasn't mentioned that. So far, my tumor is definitely shrinking, but I have two more rounds to go (Thursday, and July 24th). My surgery is scheduled for August 27th.
Kris
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Good Luck!
Yeah, mine shrunk, according to my Dr there was 10% left 😕. So it got most but, not all.
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