TRIPLE POSITIVE GROUP
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Fantastic News Homeadesalsa
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homemadesalsa - good to see you! Great news!Did your onc discuss a single Reclast infusion at what would have been your next scheduled Prolia? There is some thought that doing this can stave off the small chance of fracture from stopping. I had six years of Prolia, didn’t have a Reclast infusion, and had a similar experience as you - great recovery of density and no side effects. I was osteopenic prior to breast cancer, which worsened on letrozole, but my Dexa after stopping Prolia showed no reversal of the gained density, so yay! I will be curious to see what the next one says in January as it will represent a greater time span without Prolia.
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Quick side effect question - I've noticed the two times I've had just Herceptin/Perjeta (I'm done with chemo) that my ears feel "stuffed up" the first day. Is that an actual thing? I did find out today that I will NOT switch to Kadcyla - so I'm glad about that. My chemo response was as close to NED as you can get, according to my MO, so he doesn't feel it's warranted. He presented my case to all his partners and they were unanimous in agreement. So we're staying the course with H/P.
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Hi all,
I thought I could report myself after some time. This thread was a life-line for me during my treatments. I moved with my life somewhat, but I have to admit I still think about cancer a lot and jump at any pain that shows up.
I had my exchange surgery in March 2020. This was a bit stressfull as my surgery was on the day the nation-wide lockdown was announced (I am in Europe). It was the last day they were doing this kind of non-essential surgeries. Luckily I had no complications and I am happy with the implants.
I will be starting Nerlynx next week, so I am nervous about that. It's my last month to start it, since it's now almost a year from when I finished Herceptin.
I saw someone mentioning Herceptin injections a few pages back. Just to chime in - yes, we are getting the subcutaneous injections here in Europe. It's been administered this way for years here, it's the prefered way. (I would have to ask to get Herceptin in an I. V.)
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Hey JaBoo--good to hear from you. All good here in Central Virginia. I'd read on various threads on this site that hair should be back to normal around two years out from chemo, and I have to agree with that. I met a woman this weekend who went through this process in the last year, and it was nice to be able to show her where I was after two years.
Wahoomama--I don't remember stuffed ears but definitely a runny nose that year plus about four months afterwards, and it seems like that could be related.
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Ingerp -
Yes - I was assuming. It's strange because it's just the first 24 hours and then it disappears. It has to be related, though, since I've had it two times, exactly the same. Who knows?! Still jealous to see you living in C'ville!
Kris
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Sadly, I must report that my hair came back within a year but thinned again after I started AI's.
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speaking of hair...I have been off TCPH since December. I am on Kadcyla now but that’s not supposed to cause hair loss but boy is my hair coming in thin. I did start on Letrozole in April also which causes thinning. So far, I’m not able to go out without my wig and it’s been 9 months. UGG! I take collagen and biotin too!
Suggestions welcome
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I have no suggestions. I take collagen daily also - which I think has helped the hair come back in. I'm 6 weeks out and I have coverage all over now, but it's VERY short. I have never worn a wig, so I'll keep going with the flow on the hair. I am not on an AI - and will most likely not be taking one (my choice).
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Biotin?
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Some breast cancer patients have had success with Rogaine. I believe there's a formulation "for women."
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Check with your MO but this Holistic Plastic Surgeon has a few suggestions.
Apparently the laser hats/combs actually work 😲
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thank you for the suggestions. I watched the video and will try the rosemary oil. Hopefully won’t have to splurge on the laser light treatment
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My oncologist said Kadcyla shouldn’t cause hair loss, but could slow down growth.
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Didanyone have insomnia from Herceptin/Perjetta? I had my 5th HP only infusion this week along with my third week of radiation. I was so fatigued all afternoon, but I could not fall asleep last night. My RO told me to take Tylenol PM if I can’t sleep, but it’s just so frustrating. I’m exhausted and then bed time rolls around and I’m wide awake.
I’m switching to Kadcyla next infusion, so we’ll see how that affects me. I’ve always been a great sleeper. I stay active all day and avoid caffeine after noon.
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fab - insomnia is listed as a bona fide side effect for Herceptin, it seems as there is slightly less info for Perjeta as its use adjuvently for the remainder of the year with Herceptin in early stagers is relatively new. It is hard to suss out which side effect belongs to what when it is combined with chemo drugs, and then with Herceptin after chemo is done. Insomnia with Kadcyla is listed as a less common side effect - occuring in 10-29% of patients, but it is there is the literature.
On the hair issues - I agree that adjuvent therpaies can slow hair comeback down, but not for everyone. Again, hard to suss out what is causing what if you are also taking anti-hormonals. My hair was a bit slow to return, but then resumed normal fast growth rate once it did, even while on Herceptin. After about six to twelve months on anti-hormonals it started to thin. That said, I do have the genetic component for thinning hair according to 23andMe, and I am also getting older every year. This is the same dilemma that joint pain presents, is it the meds or age? I will say that the thinning appears to be permanent for many, so I would start intervention asap if you notice it. It may be worth a visit to a dermatologist, they often have some approaches that may help. Biotin may help, but be aware that it can skew some lab results, particularly those related to thyroid tests. Some have used the Rogaine - for men as it has a higher concentration of the active ingredient - but if you stop using it you lose the hair you grew. There are also many shampoos and thickening treatments on the market. I initially used Bosley, but I have seen a number of this site that used Nioxin. Here is a link to an article from Cosmo that discusses best thickening shampoos. I have an additional issue in that I am allergic to cocamidopropol betaine, which is in almost every shampoo - it is the thing that makes lather. It is a natural coconut derivative, and is also in bar soap and laundry soap. So... finding thickening shampoo has been a challenge.
https://www.cosmopolitan.com/style-beauty/beauty/g23339797/hair-growth-shampoo-thinning/
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I have definitely been experiencing some insomnia. Some nights I have trouble falling asleep. Others, I can fall asleep and them I am wide awake about 4 hours later. Of course, I'm also menopausal, so who knows which it is!
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I stopped losing sleep about 20 years ago when trazadone was prescribed for me. It really, really helps and it is not addicting. It's really an old 'work horse' antidepressant (that can be used at night) and because it is generic and has been around so long, it doesn't have all the buzz and whistles publicity that the drug companies spend pushing newer drugs have. This is not to say that the newer drugs are any less effective. Just sharing what worked for me.
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I have a question. I have round #4 of TCHP next week, and at this point sex has become prohibitively painful for me. There's only a small window each cycle when I feel like even trying, but now that's pretty much gone! My MO has explained that this regimen is really tough on all mucous membranes, but I'm also having hot flashes, so I would guess this side effect could also be due to hormonal changes. That has me worried about the next ten years of hormone therapy...Has anyone experienced this side effect during chemo and had an improvement when chemo ended? Thanks in advance.
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Anna - It is probably a combination of TCHP and hormonal changes causing pain. I think the chemopause alone may cause pain in some women, but TCHP takes it to the next level to the point where it's unbearable. Things got a lot better for me once TCHP was over and I had a few weeks to heal, but after about a year on Zoladex + AIs sex got painful again, though nowhere near as bad as during chemo. Sorry if this isn't what you wanted to hear, but on the upside there are some things you can do about the pain from AIs, and if you do tamoxifen instead you may not even have this problem.
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Surgery/Chemo Sequence Confusion: I saw Beesie's posts on surgery vs chemo first for HER2+ BC and I am trying to learn more about the criteria that determine the order. I just had an MRI today b/c I have 2 small masses totaling 3cm and 1 cm of calcifications and the BS wants to know if these are three small and distinct iterations or if they are linked by small strands which would mean my cancer is 4+cm. They say that my US and mammo show that my nodes are still a healthy shape--have not become irregular yet--but they will learn more from the MRI.
The BS pre-MRI is leaning towards chemo (TCHP) first, but if my nodes look good, should I be concerned if I don't have surgery first and have the nodes tested? (because otherwise, I won't know whether or not the cancer has spread out of the nodes or not) It sounds like if my mass is above 2cm, I should assume that it has spread even if my nodes look good and I should get chemo first no matter what.
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idkwhatsnext - welcome - but sorry you have to be here. The order of treatment is determined by a number of factors but for Her2+ patients it is usually driven by tumor size. You can't assume that you will be node positive based on tumor size though, I have seen large tumors that are node negative, and small ones that are node positive - the logic is definitely not linear. Generally tumors 2cm or larger receive chemo first, not because of the suspicion of nodal status, but rather because when Perjeta was approved for use by early stage patients in fall 2013 that was the size criteria for inclusion, and at that time Perjeta was a neoadjuvent drug only. It is now approved to be continued adjuvently as well. This is commonly how standard of care evolves. Prior to 2013 most had surgery first regardless of tumor size, unless there was concern for inability for the surgeon to get clear margins. Most people who undertake neoadjuvent TCHP will get a port and I have seen some folks have their sentinel node biopsy done at that time to get a clear picture of nodal status before starting chemo. If that is not possible, as long as your treatment course would not be altered by nodal status it may not be that critical if your imaging also appears clear.
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idkwhatsnext,
Here are the NCCN Treatment Guidelines for pre-operative chemo. As SpecialK noted, for HER2+ cancers, neoadjuvant chemo is recommended if the tumor is T2 or greater; a T2 tumor is <2 cm. The other criteria is being node positive (N1).
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Thank you SpecialK and Beesie for the additional info--much appreciated! I have not been able to get in to see an MO yet through Kaiser SoCal, so I have many questions that I have not been able to get answered. I'm also getting concerned about how long the process is taking to get me to the treatment phase.
Testing phase:
8/19 mammogram
8/27 follow-up mammogram and ultrasound
9/1 ultrasound and stereotactic biopsies
9/14 Her2+ result given, BS recommends chemo before surgery
9/17 MRI (waiting for results)
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idk,
It looks like you're moving along at measured clip -- not super-fast, but not super-slow. I wouldn't worry too much about getting to treatment quickly -- even Grade 3 cancer doesn't grow THAT fast. You might also have to get a heart scan and a port placed before you begin treatment. One benefit of doing chemo first is that you can see whether or not chemo worked for your kind of cancer. I did AC X 4 and then Taxol (X 12) plus Herceptin and Perjeta for five months total of chemo. It was very encouraging to see that this regimen wiped out all the active cancer in my breast and compromised node. Since the cancer was gone, I felt better about getting a lumpectomy rather than a mastectomy. Good luck!
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You're moving at a decent pace. You'll also need an Echo or MUGA and probably a Port Placement (unless) you opt to your and IV.
Believe it or not your first treatment will be here before you know it.
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when i started tchp, i was already having trouble nodding off and taking trazadone, what I found is that when i do eventually sleep, i wake up 2 hours later, awake for 30 mins and sleep again ( if lucky) , which is not good for getting deep sleep, tried both types of zoplidone the normal and ER neither worked in the dose prescribed... onco sent me for brain scan to see if anything was up there and is all clear, so am now just thinking i have got into so form or habit i need to break.
Try the trazodone and see if that works for you. it did for me prior to this
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IDK -
You've gotten lots of good advice but I'll chime in too! I did chemo first, then surgery. My tumor was 2.4cm at diagnosis - and I had one positive node. So that made me an immediate candidate for chemo. The good news is that I was 99% disease free when surgery came around and they got everyone out with surgery. I opted for a BMX even though the left breast was clear. I've heard about too many people having a recurrence down the road and I wanted as much breast tissue gone as possible. I am now NED between chemo and surgery. Since I had a positive lymph node they didn't mess around with my timeline:
Mammo/ultrasound - 3/4
Biopsy - 3/18
Diagnosis and typing - 3/23
Port - 4/5
Started chemo - 4/8
I finished chemo at the end of July and had surgery August 24th. I'm now trying to decide about radiation - but supposed to start next week. Then I finish up my year of Herceptin/Perjeta. Since I was so close to a complete response, my MO did not recommend that I do Kadcyla.
Kris
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Fab4mom-we had great insurance that did not have a huge deductible or out of pocket. I maxxed it out for three years lol because after my mastectomy, I ended up with a pseudomona infection, lost the expanders right when they were just about ready to be switched out. Totally sucked. Had to start all over, so had 9 surgeries in one year lol with recon. They tried to save them with IV antibiotics that I administered at home (or the back seat of my car if we were going out to dinner with friends lol.)
Special K-I have to log in to check on every one. I really do like being on here and should just stay as I am the worst at living beyond. All the people that say they quit thinking about it after awhile aren't me lol. I still think every ache and pain is a recurrence somewhere. Funny that you mentioned edibles. I have never tried any of that, but always wanted to. When I was with my daughter a couple years ago in LA, she had a friend bring over a big ole doobie and a vape think for me. We laughed ourselves silly. I have never smoked either so that doobie was a killer. But I slept like a baby.
Fast forward to Covid-LA daughter came home in March right when they were shutting things down to be home for out second grandson's arrival. She stayed until June (her job can be done mostly remotely), went home for a month, came back when LA went downhill and beaches and trails were closed. Stayed until after Labor Day, AND is coming back again at the end of the month lol. My goal is to find her a job she wants here and convince her to stay. All of which has nothing to do with edibles....
We did a little research when stores started to open back up and realized there was a store in Danville IL, only 90 minutes from us. Off on a road trip we went! I am now a huge fan of indica gummies for sleeping. I wake up refreshed. But I still feel like I am doing something illegal lol.
Morrigan-All the things Special K mentioned for neuropathy was pretty much what I took. At each infusion, I stuck my hands and feet in totally mismatched insulated lunch bags with frozen peas or baggie of ice. I looked like an idiot. Nurses laughed everytime. I did not have too much. Fingertip tingling and my feet were always freezing. Just ice cold. Hubs finally took to putting heating pads and hot water bottles at the bottom of the bed for me at night so I would stop sticking my cold feet on his.
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fluffqueen -- so good to hear from you! I'm glad to hear you're doing well. Thanks for the sleeping tip -- we have medical marijuana in my state (OK) now, and I should be more aware of the sleep aids now available here. Indica gummies, huh? Might be worth a try!
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https://youtu.be/J1HnRnX7-tg