Update - Saw doc this morning and I was hoping that the Enhertu would be working after the 4th cycle, but markers went up +289. Now I am at 2130 (15.3) and the general tumor markers are up almost 4 pts to 56. He said I could do another round of Enhertu and I just said, look, just over a year now and I have gone through xeloda, vinorelbine and now enhertu. Markers back then were at 70. Last pet was in June. He asked for the scan well over a month ago. Finally today, he wrote on it stating it was urgent. Pet is next Monday. I said why take enhertu if it is not working. It is what it is, put me on whatever is going to keep me alive. I did not realize but in 2016, Taxol (pacitaxol0 (sp). So he wants me to do eribuline. dx er/pr+ luminal A with her2 low. I do not get it, nothing is working. Taxol could be used after eribuline if it does not work. I do not care about losing my hair, I just want to live. I have been asking to be retested, but he said can't test of we don't have a tumor. Well, there is a bump on my rib.
So, guess we will make a decision on the 16th. I did do a search here and they are all really old and some that are "hidden", which means they are no longer with us. God bless all of them.
Scared actually. Just lots of mets to bones and I guess we will see what else come the pet. My blood test also showed my platelets were up from 307 to 438, just under 450 has being high and already searched the cause. Therefore, if anyone here has used this please reply. If anyone has had really high markers too, please reply, as it will help me feel better, I know that sounds odd. I am on this road alone. Thanks a mil ladies. Blessings
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Thank you very much for your thoughts. I hope enhertu works for you. I had 4 cycles and surely that is sufficient time for some kind of results, but markers kept going up.
You are not alone. I’ve been MBC since 2017 and went through 15 different treatments until now. I’ve experienced all the treatments you used and most of them worked less than 3 months. Even my tumor marker wasn’t as high as yours, I had a lot of symptoms such as plural effusion, pericardial effusion, tumor blocking ureters, shortness of breath and so on because my cancer was all over my body not only on bone. I am on my 4th clinical trial and hope this can last a little longer. Life is always not easy especially for us and hope you feel better after reading my story.
Indeed I do. Thank you for taking the time. What treatment are you on now? Yes, we go through treatments hoping one will work. Glad yours is working for you. Thanks again.
Most of standard care treatments didn’t work on me. I’m on clinical trial now and it just started. Not sure if it’s working or how long it’ll last. Luckily I live in Houston and MD Anderson always has some new phase 1 trials for me to try.
Let's hope that the this is the one for you. I was offered a trial sometime ago, but did not want progression not knowing the new drug would help and did not want to risk the unknown side effects. Very fortunate to be in Houston. Thanks again.
Dearest Hope… I’m so saddened that you’re going through so much. Such a sh&t show with these results! I hope someone with similar experience or knowledge can chip in soon. Can’t believe you cannot have a go with taxol, it’s ages since you had it, but I guess it’s the ‘protocol’.
Could perhaps you can get another opinion from back home? Sending you prayers x I hope you are encouraged by s_yenju x
Thank Ntash, I trust my doc and he is the one in charge of trials here and speaks perfect English. He also goes to all the conferences in the States and when they are held elsewhere. I really just want to get tested to see if my dx has changed.
Markers can go up when treatment is working because the test doesn’t differentiate between dead cells and living cells. And if Enhertu is working you’d expect lots of dead cells floating around confusing the blood test.
Enhertu trialled really well. It doubled the PFS over the other drug trialled so maybe it’s worth getting another infusion while waiting for the scan to confirm progression.
I had Abraxane when Letrazole failed and I was experiencing rapid progression. I did lose my hair but it grew back and 7 years later I’m still stable on Exemestane.
Did you do Ibrance with Exmestane? My dr wants to switch me from exemestane after enlarged lyric lesion in the sacrum. To fluverstrant and back on Ibrance. Wow 7 yrs w exemestane is great….I m struggling with this news.
No I did Exemestane with Afinitor but I had to stop Afinitor after ten months due to a rare side effect. I was to stay on Exemestane until I got progression . I did have some progression on the March scan but it stopped and started regressing according to a follow up scan in June so I’m still on Exemestane until December at least when I have the next scan.
Thanks for your reply Kerryd22. I understand that and mentioned it to my doc. After 4 cycles it is obvious it is not working. Plus, I know my body and can feel the increase in pain. My essential oils and all natural products are not helping with the inflammation and pain. We will see after the pet scan next Monday. Have appt with doc on the 16th. The last three meds, were thought to be really good and especially enhertu for her2low and I though it would be the game changer and once again, it is not working either. I lost my hair in 2016 when on taxol. Now, for me, it is no big deal. Again, I just want to live. I hope you treatment continues to work for you.
It’s a fact that we can all have different response to the same medication. Enhertu trialled really well but you’re not the only person I’ve read about who has had a less than ideal response to it.
I’m doing okay for now and I really hope the next drug is the one that works for a long time for you. Onward and upward! If a drug isn’t working then there’s no point in clinging to it. And there’s still plenty more poisons in the cabinet An oncologist actually said that me! 😁 But she is right.
Its totally understandable that youre feeling low.
I think retesting your cancer is very sensible. The PET scan results will show where the tumour/s are.
Can you stress with your oncologist that you want the metastase/s retested so you know what you're treating and what might work best?
In the UK for HER positive tumours, Tucatinib is the next drug when Enhertu fails. If appropriate and available in the US maybe you can ask about that too.
Hello Louise, Thank you for taking hte time to reply. I have stressed this retesting and he always stated that there are no tumors to test, meaning the need for a biopsy. So now with the bumps growing on some ribs, perhaps. He also stated the need to know if it is in the soft tissue. Scan in June also showed little black spots all over. He said that those spots are my nodes, so it's in my lymphatic system too, I guess. With that said, which I think is really bad, enhertu was suppose to wipe it all out. I remember in 2016 have like 11 taken out during my lumpdectomy and the sentinel and auxillary nodes were positive. For me to see the progression from the scan from Feb and then the last in June, it's a lot. 4 months later and surely more, because the numbers are up and I feel it.
Hi Hope....Your post was so sad and I think most of us will feel like you at some point in this rollercoaster journey. I haven't much advice to give you but I do know there is a lady here on the board that her CA 15-3 reached a level of over 8000 at one point and she is very much still alive and kicking. Her post was over 3 years ago. I'll link her post below.
Eribulin is a chemotherapy agent that has been around for a very long time and has a very good track record for breast cancer. Even though most people think the newer drugs are the best...that's not always the case and the chemotherapy agents that have stood the test of time deserve respect too. So if that is your next treatment go into it with a positive attitude that it will work!
Please know you will be in my thoughts as you get your PET scan and I hope it gives you some clarity. Keep us all updated. I included a virtual hug which I think you need right now. Hope it at least makes you smile. Take care.
Yep, I have a smile. It worked. Such a nice gesture. Yeah, I know I need to be positive. It is just hard when you are told this one is has great results and then the next one, etc. Great results for some and not all. It is the fact that they do the protocol and by then, our numbers and progressions just get worse.
I'm sorry . We are here for you and can all understand how this feels. Good news is your scan is on Monday . Anything new that shows up or anything that has grown in size or fdg I hope they considered taking a biopsy . I read about a newer tissue test called Travera. It tests your cancer cells for specific drugs to see if they will work. There is an early access program in the USA travera.com this test is pricey but they have no - cost studies for it . If you are up to it and in the US call or email them to see what you or your oncology center needs to do to get this started .
Thanks for the reply and infor Aprilfoolz1. I remember asking him about that test, I think and he said they did not have funding for those tests. I will ask again to confirm if this was the test or not. Thank you for sharing.
If you have the energy and are in the US call the company directly . The website indicates they have some no-cost options . Hang in there ! Sending you hugs.
I am so sorry you are having these issues. I have not had experience with that drug but I'm sure it is frustrating to keep changing meds and then having them only work for a short time. This is definitely a tough journey we are on. I hope your scan will give you some answers and that your doctor will find a treatment protocol that works better for you. Sending you hugs and prayers.
I do know that we all go through numerous meds. It is just that I think 3 in a row without any of them working is the worst part. Another step back, so to speak, or even several. Thanks for the hugs and prayers. All of you are so kind to lift my spirits I really appreciate the love.
My wife just started Eribulin in July, her sixth protocol, also following Enhertu, as it sounds like you may do. She was on Enhertu for about six months with her tumor markers dropping pretty dramatically from 4200 - 2100-1800-900-800 but then leveling off and even rising a bit. Scans showed possibility of progression, so our onc recommended the switch. Thankfully Eribulin kept dropping tumor markers even further, down below 300 yesterday! Side effects of both meds were challenging but fairly tolerable. Complete hair loss (even with cold capping) and a number of serious GI issues on Enhertu, and some neuropathy and worst neutropenia in past six years on Eribulin until we got the dosing and cadence right. But the overall results on both have been quite positive and we are hoping to stick with Eribulin for much longer. Hoping the same for you!
Thank you Dave for boosting my spririt. I did not have really any serious issues with enhertu, expect the markers rose and more progression since June. Wow, your wife has been on it for 6 years? Have her tumor markers gone down to normal range and she is then stable now? I have lost so much strength in the last 2 months and can feel the progression. Is you wife same dx? er/pr+ her2(low)? Blessings
At that time, I did not really know what they were giving me. It was a booster shot and one did the job. Months later on Eribulin (jan) they wanted me to do 3 days in a row and the neutrophils were over the valued number. Plus, I had so much pain in both legs it was horrible and I read taking too much (which they gave me) can actually make your cancer worse. Instead, I eat a lot of different foods that keep my neutrophils up. Making sure I get enough vitamin C too. Two kiwi's a day and kale, beetroot, nuts, beans, etc. I have changed dr's and was taken off chemo thank GOD and I am on everolimus and exemestane and feel pretty good and my bloodcount is pretty much back to normal. Tests for the ers1 and others are being done and surely should be done by my next appointment. How are you doing Praising?
Yes, my wife is same dx, er/pr+ her2 low. She was only on Enhertu for the first six months of 2023, but has been on that plus other meds for a total of 6.5 years: Ibrance/letrozole for 3.5 years, a trial for Amcenestrant (oral SERD, similar to Elacestrant) for another year, then shorter stints with Xeloda, Doxil and Enhertu. She began Eribulin in July of this year and has only had four or five infusions so far, while they figured out dosing and cadence because of neutropenia. Hope this helps and sorry if my prior note was confusing! But both Enhertu and now Eribulin have been very encouraging as far as lowering tumor markers and reducing actual tumor size. Hope this next step goes well for you!
I always wonder why others with the same dx, have different treatments. I was on anastrozle first after taxol and 18 days of rads , 2016/2017. The in 2019 mets, ibrance/fasoldex, the xeloda, vinorelbin and enhertu all in the last year or so. Some that you mentioned above I have never had. Well, I am super happy for those that find a med that stops progression, brings markers down and even those that are so fortunate to be in remission/NED. Thanks again for your positive energy. If it is Eribulin, I pray it is the one for me. Blessings
I am hoping ofr an update to see how well eribulin is working for your wife. I have also had issues with neutropenia and hemoglobin. Red cells though were down to 10 (should be 12 min) months ago and year or two too and I was never given a booster. But now they want a booster. Plus, my neutropenia was at .47 and last blood with booster (min 1.70) was 6.50 and the max is 7.00. Too much of a good thing can be bad too. Plus, my doc was in San Anto for the yearly cancer conference last week and I had a resident and they did not schedule me for consult and treatment for the 26th because no doctor was available. Really? I feel like this country I am living in is crazy. Although I thought the extra week would give my body and veins a rest. In the past doc told me it was important to be consistent with treatment -back to back. How is oyur wife doing and are numbers norm yet? Hugs
Greetings! Sorry to hear that you are having some challenges with neutropenia, RBC, HGB and others. Below is a summary of how things have been going for us—kind of a good news, bad news update on Eribulin I guess. Good news is that 15-3 tumor markers have continued stable/downward. Are currently in low 200s, which are best in over two years (remembering they were 4200 in beginning of this year!) and overall bloodwork is also quite positive. And her main tumor has almost completely shrunk away! WBC and neuts are great (she gets Neulasta along with her chemo) though RBC, HGB and HCT still run low, which does cause fatigue and weakness. But in addition to that, the real bad news has been significant neuropathy in her hands and feet, which has probably had the most dramatic effect on both our lives since her original dx. Thankfully, she doesn’t have any nerve pain as some patients do, but she has lost strength, dexterity and feeling in her hands and feet, which makes even the most basic daily functions a challenge. So she walks with a walker and can barely handle steps with a lot of help. Dressing, bathing, toileting, eating, using her phone, computer, TV remote, etc are real challenges. She has also had a few falls in the past weeks, which could have been even more serious. Sorry for all the details, but just wanted to help you understand why we are probably switching chemo next week, most likely to Gemzar/gemcitabine, in hopes that the neuropathy might improve enough to regain some improved functionality. Because we are switching for side effect reasons, our onc said we could always switch back to Eribulin, if the Gemzar didn’t help or wasn’t as effective. She had CT scans yesterday and while we haven’t met with anyone yet, my read of the results in her patient portal look very stable. So I’m guessing she will switch on Monday… She had been going to outpatient PT for the past month, after two months of in home OT, PT and nursing. But after the falls, we are back to in home for all three and I am pretty much in 24/7 caregiver mode… fingers crossed the switch will bring some improvement!
Hope things will improve for you as well. Take care and hope you can enjoy the holidays!
Happy Holidays! I am just thrilled to hear she is doing well, well stable. Yep, I too have numbness in my fingers tips and some in my ankles, I know that sounds odd. It is like my ankles and feet go to sleep and then you go to move and you can't feel them. I was also told that gemzar was next. I am just hoping my numbers are goingo down as I was at 5000 in Oct. They went up almost 3000 in one month. I just do not like getting those boosters as they make me feel bad, not good. They do not relieve the tiredness. Really hoping that eribulin is going to get me stable. I have decided to stop working as I can't manage appointments and teaching. It is just too stressful sitting at the hospital after doc appt and blood work waiting for the next cycle. They tell me it takes 2 hours to prepare the iv mix. So they have to wait to see if they get the go ahead if my numbers are ok. Crazy. Last Tuesday I was there for 6 hours. Also thinking about a port in chest, as my veins from blood work and chem are just about shot. I really hope changing the meds for your wife with help bring back feeling, as quality of life is so important instead of just existing. She is one luck lady to have so much support from you. I think it is just wonderful that you found this sight to gain as much information as possible and to then let her know what you have read, which hopefully makes her feel like she is not the only one on this journey. I am just waiting for my biopsy to make sure my dx has not changed. Next visit is the 2nd of Jan with markers tested. I pray for all of us that 2024 will be a breakthrough year with new meds with less side effects that keep us all here longer. Do keep in touch Dave and thank you so much for always taking the time to respond. Hugs and blessings. P
We will be at Dana Farber tomorrow (Monday) and I will let you know what happens. Hoping we can switch chemo and get this neuropathy under control…but I know it’s a roll of the dice on whether the nerves will heal.
Hi Dave. That really is an important issue with quality of living. Mine is just starting and although it may be working I need to feel my limbs and digits. 2nd appt with 3rd cycle tomorrow. I lost my hair and it is already growing back. Did your wife have this too? Sending positive energy for her appt today. Blessings
Hello Dave, Happy 2024. Just wanted to check in to see how your wife is doing. After 3 cycles, my tumor markers were cut in half. Hope it continues, but it is really important to have consistent treatment. Over the holidays, I missed one week because neutrophils were too low and the other week was the week of the 26th, my dr. was off and no one else could see me, I guess. The pain I had in my right side rib, came back and so those two weeks without treatment was not good. Hope to be able to bring markers down to normal range. Wishing all is well with you both. Blessings
Greetings and Happy New Year to you as well! I was thinking about you and planning to reach out next week, as my wife will only be receiving her second infusion of Gemzar next Monday. It turned out that she was hospitalized later in the day back on 12/11 right after her first infusion. Hopefully it had nothing to do with the infusion but we don’t know for sure. Turns out each of us was hospitalized twice in December for complications of Covid. We are both fine now, but it threw us quite a curve ball and messed up her treatment schedule as well as setting back her OT and PT work to try to improve the neuropathy impact. She actually got a bit worse and we had to hastily create a first floor bedroom for a couple weeks coz she couldn’t do stairs at all. That has improved so she is back in her own bed again on second floor but she still has pretty serious neuropathy in both hands and feet which has a huge impact on daily life. As for your questions about hair loss… she lost all her hair (first time in six years and five lines of treatment) early in 2023 on Enhertu—even with cold capping. It has continued with both Eribulin and Gemzar, although there has been some patchy regrowth. She has a number of wigs, but prefers the comfort of caps and scarves, so that’s our new norm at this point. Her tumor markers have continued to drop so we are hoping to stick with Gemzar and see how it goes. Hope you can get back on cycle as well and that your treatments will continue to be effective! Take care and all the best in the new year!
Thank you so much for the update. Although going up stairs is difficult, it should be good exercise for her. This is the 2nd time with hair loss. Hopefully her issue with neuropathy will improve too. I use chamomile and lavender 100% pure about $10 each bottle with cbd oil on my hands and feet to eliminate any tenderness, tingling or numbness right after chemo. It works wonders. Using it in the middle of your feet is key and then message out. Put on some socks. I suggest you look it up. No reason to be taking more drugs like a band aid. Hope it helps. Felling better already since last Tuesday and next treatment to complete 4th cycle is this Tuesday. It stays in your system for 5 days and that is why it is so important not to miss a treatment. Covid? Oh goodness me. I thankfully have still been lucky. I wear masks everywhere outside my house and carry a plastice bottle of diluted alcohol and use it after touching money or any thing that has not been already sanitized! Take care.
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Anyone with experience with Trodelvy side effects and cold capping to save hair? Also how long did you take Trodelvy?
Wondering
The best and worst of my MBC journey: all in three months!
Tumor Markers (how reliable)
