TRIPLE POSITIVE GROUP
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I am glad to see this topic active after a pause 🙂
I am still on Herceptin injections untill September. They make a large, mildly tender spot on my thigh that takes about 4 days to fully resolve. Some people don't feel it at all, some get pink or red spot and have to apply cold to get relief. I mostly don't know about it, untill my kids come and climb on my lap
I didn't have Perjeta as well. I wanted to have it, but after some consultations with other facilities my MO didn't recommend it as I am a borderline case - tumor 21mm,1 node had only micromets. The trials show better gain from Perjeta with hormone negative cancers than with tripple positive...
Oh, and I had a bone scintigraphy today and made the stupid mistake to look at the screen when the nurse came to ask, whether there were any places I felt pain. I saw some hot spots and my mind went racing. By the time I came home I was a wreck! Well, I tried calling my MO late in the afternoon in case the results were in... They were and she said everything is ok. When I asked about the hotspots, she said the doctor noted some degenerative changes. Do you know the feeling when you are happy you have some degenerative joints? 😀
Suburbs, how is your healing? I hope you are done with ATB?
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Alice--no info on the subcutaneous Herceptin delivery, but I asked my treatment center about it back in early March, just after it was approved by the FDA, and when I had about 3-4 Herceptins left. (I assume you know it's been the standard in Europe for quite a while?) What I was told was that after FDA approval, it takes a while to manufacture a supply, distribute it, train infusion center nurses, . . . I didn't get even an approximate guess of how long it will take to be widely administered that way here, but in my head I was thinking easily 6-9-?? months.
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SpecialK, this whole process so far has been a roller coaster. BS had suggested a lumpectomy when I was first diagnosed. Once AC was completed an ultrasound was done and my tumor had shrunk almost 50%. That meeting with BS he suggested a nipple sparring mastectomy. I met with PS who said because of the location of the tumor ( close to nipple as well as skin surface) he suggested nipple reconstruction using either tissue from my labia ( ouch! ) or a 3D nipple tattoo. I'm choosing neither.
Both my daughters took off work so they can be there when I ring the bell 7/12. Well that's not happening now. I have to believe whatever MO and BS decide will be the best for me. I am encouraged that MO is looking at a regimen that was only recently approved. It is a disappointment that this doesn't appear to be ending any time soon though. I have a countdown clock on my phone that reads 29 Days 34 Minutes till chemo is over. I guess I'll be restarting that after surgery.
I still feel very fortunate that I'm at an early stage. I've read so many posts on these boards of women in stage 4 and it breaks my heart. I have to remind myself things can be so much worse than they are.
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Thank you for your kind words MACTAZ and for the articles, I'll read those today.
Just got back from my Mom's 2nd TCHP. I was not there early morning when she spoke to her OC but he told her that her Oncotype came back HER2 negative. Her initial Immunohistochemisty for HER2 came back equivocal but then FISH came back positive. I tried to call her Surgeon as we have more open communication with her to see if this is still the best treatment for her. Wondering if HER2 is showing up in some areas on tumor and maybe not on others... Has anyone else experienced this with their test results?
Also, has anyone experienced critically high WBC after TCHP? My Mom's was one week after her first treatment, it was 32.5. She did have Neulasta and I'm guessing that is part of it but the nurse mentioned that it could be her body kind of going into overdrive with white blood too. Just wondering if Neulasta is for sure needed. I don't think we want to risk trying without it but was curious if anyone else had experienced high WBC after treatment, with or without Neulasta. It was a normal level today so it went back down.
Thanks!
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dawns1962: Kadcyla is now the standard of care for treatment after surgery, when/if you have any remaining cancer found during surgery, and this is for those who, like you, have received neoadjuvant (i.e. before surgery) treatment of the cancer. This is a new thing; the results of the trial that changed the practice were presented only last fall, and Kadcyla was approved for this purpose by the FDA only a few weeks ago. That's why you don't see many of us here that got that treatment: it's new. So, if you still have cancer remaining when they do the surgery, you will get Kadcyla, because that is the latest and greatest. And it is much, much, much better than what we used to get, cutting the rate of recurrence in half.
I was diagnosed IIB, 3+ cm, with nodes positive confirmed by biopsy, and cancer left after the initial treatment, found during surgery, both in the breast and in the nodes. People like me have the higher risk of recurrence; this group of patients with cancer left after neoadjuvant treatment bear all the risk of recurrence, really. Cutting that risk in half, as Kadcyla does, is a big, big thing. Kadcyla was approved for this purpose when it was too late for me to get it, because I had completed H+P for an entire year. I would have been so happy to get it. But I am happy now to see that people like you can get it and prognosis improves.
So don't be disappointed to get Kadcyla! I understand wanted to be done with everything, though. I know it's tough.
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LaughingGull, I hope I don't wear out your patience but I obviously have much to learn. I was under the impression that BS would remove all remaining cancer during surgery. When MO examined me yesterday he said he feels something hard but doesn't know if it's "live" or scar tissue at this point. I've read on these boards that tumors don't always shrink. Sometimes they're attacked and wind up like Swiss cheese. I see BS 7/2 and assume he'll do another ultrasound but I guess I won't really know the extent of progress till surgery. If no cancer is found during surgery ( I'm not too hopeful at this point ), I wouldn't get Kadcyla?
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Dawn, until the moment I went to surgery I could still feel something at the site of my tumor. But when they did the pathology, all that was left was the clip placed at biopsy and a tumor bed (the tissue that surrounds a cancerous tumor and provides it with oxygen, growth factors, and nutrients). NO CANCEROUS cells. I was prepared to have to BEG my MO for Kadcyla if I had live tumor! He laughed at me and told me I would not have had to beg! So if you get a pCR (pathologic complete response=no cancer) you continue with Herceptin only (maybe Perjeta--some do but I did not). If they find some live cancer cells in the tissue, you'll get Kadcyla, which as LaughingGull mentioned--is a new development, hence the reason I was prepared to beg to receive it. The good news is that the chemo drug that is attached to the Herceptin is very mild compared to the drugs you're currently taking, which are killing good cells as well as bad cells--everywhere. There would be no need for icing (that's only a problem with Taxol/Taxane drugs because they damage nerves), and your hair would even (most likely) grow back. It's been called at "smart bomb" drug or "super Herceptin" because it uses the same pathway as Herceptin to deliver chemo directly to the HER2 over-expressing cells and kill only those bad cells.
I would NOT give up hope for a pCR (it's not over yet and that chemo is still doing its job), but if you don't, the good news is that the clinical trials on Kadcyla are impressive. I haven't read about it in quite a while now, but if I'm remembering correctly, it's the recurrence rates that are most impressive--very low. That's a dream for any gal in our shoes.
All the best,
Beesy
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dawn, yes, your surgeon will of course all cancer they find during surgery, when we talk about "cancer left", that is left after treatment but before surgery; during surgery, they remove the tissue in and around the cancer area, and they look at it with a microscope; if there is not a single cancer cell left, they call that a pCR, i.e. pathologic complete response, that means your treatment already killed every single cancer cell around; if there are any cancer cells in the tissue removed, then you didnt have a pCR, and you get Kadcyla. The reason you would get that additional treatment is because, if you have some stray cancer cells in the tissue removed, you could also have some stray cancer cells left somewhere else in your body, undetected by imaging. Notice that the blood that goes to your tumour goes everywhere else in your body. They would give you additional treatment to kill any hypothetical stray cells that could be somewhere else.
Here is hoping that they dont find any cancer cells in the tissue removed during surgery, and you don't need additional treatment!
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I believe the Caregiver (you) can have the hardest role. We patients get attention, treatment, empathy ... .
Caregivers have their lives to live plus the responsibility of caring for the cancer patient.
Take loving care of you. Remember you need attention, empathy and love as well.
Best wishes.
Vicky
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Beesy and LaughingGull, thank you both for all the information.
The reason I don't expect to be pCR is by the physical appearance of my breast. Originally I had a small indentation to the right of my nipple. Now the indentation is deeper and runs almost across the nipple and there is a visible lump right above the nipple. Nurse navigator had said I would be able to see the tumor disappear. I know a woman who's triple negative and her breast went back to a normal appearance less than halfway through treatment.
It could just be the way the cells are dying. I did go from a 3cm mass to 1.7cm. Maybe it is scar tissue but I'm better at preparing for the worse and then being relieved than expecting the best and being disappointed.
I'm glad Kadcyla will be available if needed and so glad I found this site to help me with the process.
🤗🤗
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coachvicky, thank you. I'd do anything for my Mom. I have a 3 yr old daughter and supportive husband (and in-laws to help with our daughter) and my Dad is there with my Mom, she's 69. It's good he's there to keep an eye on her but he doesn't research and know as much of what is going on (which maybe is better!). We live about an hour away so it's not too far which is good. I just want to make sure she's getting the best care, treatments and emotionally has a support system.
I spoke to her surgeon last night who I think was frustrated that the oncotype test went through as it was supposed to be cancelled (once we found out FISH was positive). I'm wondering if this is because oncotype is more for those who are HER2 negative from what I'm trying to read and understand. If anyone has any insight that would be wonderful. She has not had lymph nodes tested/taken out yet either, this will be after neoadjuvant treatment at surgery time. Just trying to understand the purpose of oncotype given my Mom's FISH being positive. Maybe there are other benefits of having the oncotype, I am unsure, she's hoping to get a copy of her results today. It was 7:30pm when surgeon called me back last night so I didn't want to keep her too long and really I thought of more questions after we got off the phone and I researched more. She did say not to worry about her WBC being high after treatment that it is due to the Neulasta.
Prayers for healing for you all.
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Kadcyla has not been all roses for me. 3rd treatment fried my nerves to the point I lost use of my hands and the pain has been excruciating. Neuropathy. Very slowly getting a tiny bit better. Praying nerves heal. Cannot do any more chemo. I requested Palliative care in conjunction with conventional and will be doing alternative methods in hopes of staying alive. Busy tying up loose ends and making final arrangements. Terrifying is an understatement.
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Cascadians, I just wanted to say that we hear you and are thinking positive thoughts and hoping for your recovery. This triple positive stuff is a beast and none of the treatments are easy and the side effects are brutal. Perhaps you have done enough treatment to beat back the demon TP. Bravo for continuing with palliative care and alternative treatments if the current regimen is intolerable. I plan to hope and pray that your treatments so far have done their job and that you continue to recover. Hugs.
Jaboo, thanks for asking. I am on a hiatus right now from antibiotics and hope I finally have kicked this infection to the curb. Hoping you are hanging in there and feeling better everyday
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Cascadians, I agree with Suburbs. Praying for you to continue to recover fully and heal.
I gave my mom a plaque stating "Always remember you are braver than you believe, stronger than you think, more beautiful than you can imagine and loved more than you know" This is for each and everyone of you battling and who have battled BC.
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Hi cascadians,
Here is hoping that you make a good recovery, and that the treatment you took so far did its job. I was not suggesting treatment with Kadcyla is easy. My prognosis is kind of ominous,so I would have given it a shot, as you did, and hope for the best. Sorry you are having a bad time. Did you tolerate Herceptin well? Maybe you can get Herceptin + Perjeta, now that Kadcyla is off the table for you?
Good weekend to everybody.
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Alas, neuropathy is listed as a "side effect" of nearly everything used to combat triple positive cancer. And it's cumulative. So doing more is heaping injury on an already devastated system. I did 7 months of Taxol/Herceptin, then Herceptin, then 3 Kadcyla. I had every intention of doing a full year of Kadcyla and was happy my insurance paid for it. Of course insurance won't pay for any of the 'natural' treatments I'm turning to now. If only there were a cure for neuropathy. With cancer you go as far as you can until 1) chemotherapy no longer works, or 2) you cannot tolerate chemotherapy anymore.
There ARE many natural foods / herbs / treatments that do work. One has to research, and find a way to access those methods and pay for it. I have a friend who was stage IV out the gate, given up for dead from the start, who went to Germany 4 years ago for alternative treatment and is now having a great life cancer free. I don't have the money or energy to go to Germany but will try to find many of the methods here in the PacNW. We are all doing the best we can. I am grateful for these forums as a way to research, share information and support each other. Love and prayers to all of you.
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cascadian, thinking of you and wish you the best.
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https://www.ncbi.nlm.nih.gov/pubmed/15616239 Cascadians, the link is to an article reporting on the effectiveness of acetyl l carnitine on diabetic neuropathy. I figure neuropathy is neuropathy, right? I take it for numbness in a big toe, and it works for me. While getting taxol, I took l glutamine and vitamin B6 to ward off neuropathy. I never had more than twinges while taking the L glutamine (15 grams twice a day).
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cascadians, have you tried/considered hormone therapy?
I have been in treatment for a year and a half now, of which 5 months on chemo and the rest on treatments other than chemo that don't have neuropathy as a side effect -although they sure have other side effects. I do have some neuropathy from the chemo and it sucks. Chemo sucks. But particularly for triple positive cancer there are non-chemo, effective treatments available.
I am European. Germans are notoriously adept to natural treatments, some of which are total bunk. Germany's health care system is a mix of public and private. The private plans pay for all sorts of crap, including homeopathy, which is extremely popular in Germany. Just a reminder that, because some treatment is covered by insurance and/or is popular in Germany, it doesn't mean there is evidence that it would work.
Wish you best with your research and treatments but please be careful! Please share what you find of interest.
Best,
LaughingGul
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THANK YOU PatinNM! Really appreciate that link. Ordered a bottle just now from Amazon. Taking so many supplements, should be superman flying by now :-)
LaughingGull, I did try Letrozole for 8 days. What a disaster! Won't even list all the weird problems it made.
I have diabetes, under good control with very careful hardly eating, insulin and Dexcom 6 continuous glucose monitor. Also have autism.
It gets to a point where living = suffering so much, quality of life plummeted, not worth the suffering to keep existing in the physical world. But I'm still trying to survive, just without all the horrendous pain and side effects experienced so far. I did make it for 7 months on chemo and would have continued if the neuropathy pain didn't suddenly escalate past endurance. Letrozole for 10 years? Amazed anybody can withstand that but some persons experience few side effects from all the 'western' 'treatments.'
A friend very kindly sent me the DVD set for The Truth About Cancer: Eastern Medicine and I've watched those, taken notes, just ordered the Detox series. Researching to find anything that might help that I can afford.
Have appointment with MedOnc who is fantastic on Monday. Will ask him how fast triple positive takes over after 7 months of chemo. Have asked him for 'alternative' treatments but FDA doesn't approve any of them so he can't do it but apologizes.
It has been eye opening learning about how western medicine was taken over by a cabal of big Pharma long ago. Scary and sad but we have to do the best with what we have.
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Casacadians, can you take just Herceptin? I don't think it causes or aggravates neuropathy. Many women do it with little side effects. I had pretty much none when I was on just Herceptin. But then I seem to be one of those who is tolerating the "western" treatments very well. Best of luck in your recovery, my heart goes out to you.
I also just wanted to check into this thread and report on my experience with Nerlynx. I've been on it for two weeks and two days now. I started with four pills for a week, then five pills for a week, and i've been doing six pills for two days now. My biggest side effect was fatigue. I was coming home from work and just going to bed for a few days there I was so tired. That started with just four pills, but it has mostly resolved. I had revision surgery about three and a half weeks ago so I imagine that didn't help with the fatigue, and also since I had just had surgery I couldn't exercise to combat it. But anyway, I've only had one bout of diarrhea and that was on my fourth day of five pills/day, after I had eaten deep fried brussel sprouts the night before. Other than that, I've had more constipation than diarrhea actually. I've been on a fairly normal diet, eating lots of fruits and veggies, brown rice and beans. Even ate Indian food and that didn't cause any problems. I also had more C than D when I was on chemo, so I'm not all that surprised. So there you go. One data point for anyone who is wondering about Nerlynx. I've gone into more detail on the Starting Nerlynx, May 2019 thread. Feel free to join us there even if you're starting later than May.
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cascadians - to ward off neuropathy during my six TCH infusions I took 30g of powdered l-glutamine in three 10g doses, dissolved in a cold and non-acidic drink. I also took a regular 100mg capsule of B6 and 1500mg of acetyl l-carnitine daily. I developed neuropathy in my tongue and chin, fingertips and soles of feet with the first infusion, but it resolved before the next infusion 21 days later. This was consistent until the half way point, and then it stayed. I continued with the supplements through chemo and afterward, and the neuropathy was gone by about the 90 day PFC point. I think might be worth trying this combo to see if it helps you. My mom developed severe and permanent neuropathy after treatment with methotrexate for a degenerative neuro-muscular disease so I was very attuned to the symptoms and tried hard to prevent it.
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All,
Did you usually take out the port or keep it for while after the one year treatment?
Thanks.
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I'm almost 5 years out and I still have my port. In fact, I'm leaving in five minutes to get my port flushed and to get my monthly Zoladex (ovulation suppressor) shot. I don't know why I still have it; I just do. It's convenient and I'm superstitious. Suppose I get it out, and the beast returns? It is what it is.
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Thank you, ElaineTherese,
How often do you need to get port flushed? from where?
Thanks again
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My port was pretty painful the whole time I had it. It stuck out, was in the way of my bike backpack, and it turns out it had a mild infection. I had it taken out asap after I finished TPH, so then had the rest of the year of H and P via IV, which was no big deal.
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Thank you SpecialK. Took my 1st acetyl l-carnitine just now. Did ice my hands and feet the last 7 months. Taking lots of supplements. Neuropathy is getting teeny bit better but still debilitating, painful, buzzing, burning, weakening. Praying it heals. Took liquid morphine for first time last night but it just made me groggy, didn't do anything for this pain. Grin and bear it. Do have bottle of Cymbalta which I might try if I don't do any more chemo. Appointment with MedOnc today. Prepared to hear major Doom.
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My oncologist suggested that I keep my port for two years post last Herceptin as most Her2+ driven recurrences occur within that time frame. If I had resisted he would have understood, but I had no problem keeping it. My port was put in during my BMX (I had surgery first as Perjeta had not yet been approved) and I had no external scar as my surgeon installed it under the mastectomy flap. He also used a very small port and it didn't show even though it was subclavian. I ended up keeping it for six years, it was finally removed in late 2016. I never minded going in to the infusion center forport flushes, it was a way of staying on the radar and also a way to ask questions or get faster action on any problems. I do understand why some want their port removed if it causes a negative association or any emotional response, or is a complication.
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I freaking hated my port because it stuck out. Sometimes I would go in to get something done through my port, the nurse would look at the lump under my shirt and say "oh, it looks like they already accessed your port today" and I would have to tell them no, that's just the port sticking out from my chest. I can't imagine leaving it in for two extra years. I got it removed when I had an implant revision, about two months after I finished herceptin.
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I get my port flushed every 6 -- 8 weeks at my infusion center. I do it when I'm getting my Zoladex or I have an appointment with my oncologist. The only thing I dislike about my port is when I go through airport security. The scanners inevitably pick it up, and some female TSA agent ends up groping the left side of my chest.
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