Hello and please excuse the lengthy post as I have a lot bouncing around in my head. I want to review my treatment path so far:
I was diagnosed denovo in September 2019. Mets to lungs and bones. Started with Ibrance and Letrozole and lungs cleared immediately bones were fairly stable and CA15 dropped.
After about a year CA15 began to rise and bones were worse so I have five round of radiation to my hip. This brought number back down briefly but we decided to switch to Fasoldex in 2021. This only worked for 2 months. Added Xgeva around this time for bones.
In March 2021 we switched to Xeloda/Capcetabine oral chemo. Aside from the hand foot struggles, which were helped by lots of your input, it was fairly tolerable and worked for a year. As with all of these chemo meds I'm finding that at the end of their usefulness (just my experience) they begin to mess with my digestive system more than as expected.
In February 2022 I had a port installed and we switched to IV Taxol. Again side effects were manageable with your advice and my numbers CA15 (which is important for me) dropped from 8000 to normal range very quickly. After a year I had pretty significant spread to my liver and number went back up to around 1000.
Switched to Carboplatin in Feb 2023 for two months and my cancer got significantly worse in my liver. We changed to Trodelvy in May 2023 as it was recently approved for my type of cancer. It brought numbers and liver spread down immediately to almost normal.
OK so now its May 2024 and my one year typical treatment run may be coming to and end, CA's rising incrementally so I am asking for patience and more testing because options even with new approved meds are diminishing. I will have a CAT scan and we will see. I feel good except for med side effects which are starting to effect my digestive system again seriously. I think the next drug on the menu is Enhertu.
So no real question just and update as there has been a lot of discussion on CA15 - it is important for me but in retrospect maybe too important? Maybe should have held on longer to previous treatments? What would that has bought me? A few more months? I'm praying that more new meds are approved and for another year as I turn 60 next month. But, it is in God's hands not mine.
Have a great day ladies.
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Iwasborntodothis
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Thank you. It's also steroid day so I'm a little amped.
I have had a lot of light this year. We decided to sell our home of 30 years and move from Phoenix to Tucson - from a 100 year old house with limited accessibility (should I need more care) to a beautiful view lot one level more modern home with a pool near where we went to college and fell in love. It just seemed so right and everything fell into place. It's been a lot of work but is was nice to have a hand in cleaning and cleansing out and starting anew. My husbands work down here and his staff is a much better fit and he has been riding his bike more.
So despite all of this cancer stuff...I feel pretty darn good and happy and blessed.
Prayers UP ! I’m newly 60 and if Enhertu is on the list, take it !! It was fabulous for me. By far the easiest of treatments. I had a great run on it 10.5 months. Lost no hair and only mild constipation. I’m ER+, HER2 low
ok me too on ER+ HER2 low. Thanks for the response! I haven't had hair for 2 years so when it grows back my husband thinks something is wrong. I also got my disability approved so that $ will be awesome and starts next month. It's been a crazy year so far but I am sitting here in Tucson watching the quail run by and I am truly happy as a clam.
I am headed for Tredolvy now as I had major progression after 3 months on Orserdu. Prior I was 18 months stable on Faslodex/Ibrance. Now the spread is everywhere and in the liver too.
Can you tell me your experience with side effects from Tredolvy? Hair loss? Diarreah?
I have not had hair since I did Taxol 2 years ago so I am not sure if Trodelvy would have done it but it's not grown back.
Please read some of my other posts about this drug as I believe the pre-meds they give you help with side effects. First round is the worst as it flushes everything out pretty quickly in that first round. I had horrible liver mets and liver blood work. My liver blood work is all normal now and my liver doesn't hurt like it did.
I have heat sensitivity - heat rash - if I am in hot humid weather and have clothing on that restricts my sweating. My skin also almost always looks like I am peeling from a sunburn. It made laugh that the product site said "exfoliation" - yes, that's what it is sure.
I am nauseous a few days every cycle. I chew gum and take ginger chews, I try to stay away from Zofran because it causes constipation. I am either contstipated or I have loose stools the first 2 weeks for a few days, I have not been able to figure out a balance there and it is frustrating. My husband has to remind me that week 3 will be better.
My week off (this week) - I feel normal happy and healthy and I eat like a pig so I tend to gain back the pound or 2 I loose during weeks one and 2.
Man you are a trooper with all that you have gone through and still an inspiration to me. Can you tell me what your dr has said about meds, once your 15-3 and CEA are both in the norm? Are you comfortable sharing what your 15-3 is at currently? If I understand correctly, it has taken a year of trodelvy to clear up a lot. Hugs and blessings.
no worries. My CEA is normal but my CA-15, after going down to around 200 is now bumping along around 300 so we will be doing a scan to see if I have to move to Enhertu. I was at normal at one point on Taxol and my doc even said "possible remission" but my cancer decided to go on another run. I really do feel very good most of the time and I don't feel bad right now and I am certainly not enthusiastic about changing meds. We look at both numbers and scans and also how I feel so I will know more mid-June.
Your pic is really cool. You know what is right and it is just a gut feeling. Regarding your meds and what to to next-I am er/pr + and her2low. Enhertu did nothing for me. I was tested for mutations and have none after being told I was resistant to HT and went through 4chemos, iv and pill chemo in 2 years. TM's are important to me too and I am now at around 3000. I started everolimus w/exemestane Feb 14 and will see if it is working this week and a pet due too. I thought I would be put on trodelvy. What I do know is that erso, sera2 is now TEQ103 and is promising. You have given me hope knowing that your tm's were 8000 when mine were nearly 5000 last Oct. We are all hoping for the cure all.
No experience of any of this except Ibrance and Letrozole being my first line of treatment too. Everything else is gobbledegook for me. But I just want you to know I’ve read your thoughts and I hear your fear and frustration. And I can imagine that the not knowing is the worst bit. Clarity is a marvelous thing. I hope you get some.
Thank you for posting this update. I noticed you hadn’t posted for a while and was hoping all was well. There is a lot of support for and great success with the sequencing of ADCs. More ADCs targeting different proteins are under trial and on the way. Research shows Enhertu is more effective than Trodelvy. Enhertu brought the Breast Cancer Specialists at the 2022 San Antonio Breast Cancer conference to their feet clapping for a standing ovation. Did you move to change treatments too soon? Your oncologist wouldn’t have put you in jeopardy. I have always felt better to act a.s.a.p with a treatment change to keep the cancer under control than to wait and run the risk of letting it get out of control. Best wishes for a good outcome. Trodelvy continues to bring my tumor markers down. Agree it has been a wonderful drug and was easier to do once the dosage was dropped and the infusion time kept at two hours.
Thank you for your response. This year has been busy to say the least. My doc (I am thankfully back to my original team after insurance problems) is a data geek and I know he is an attendee at this conference. Enhertu has been on the "next up" list for awhile. I agree with the control bit as the 8 weeks on Carboplatin literally almost killed me.
Trodelvy has been unpredicatable as far as side effects for me. We reduced my infusion to 90 minutes and that works well for me. If CT scan is unchanged we will hang on to this treatment awhile longer.
I understand your frustration with drugs stopping working. I’ve been through a lot changes too I recently began Enhertu and it seems to be working on my cancer One long 15 hr day I get the worst diahrea It’s nonstop. So I live in constant fear of diahrea. It’s horrible
That's too bad, it makes it difficult to plan when you feel like that. The infusion nurses don't seem to be fans of Enhertu based on other patient's feedback to them. They were glad I was on Trodelvy first. So, on a funny bathroom note...our "old" house only had 2 bathrooms and both circa 1928, so I am grateful that we now have 3 "modern" bathrooms so my more husband doesn't have to endure my trials in this regard.
No useful drug input but just wanted to say I hope your treatment goes well and how lovely to hear about the successful move making you and your husband so happy x
I had a fabulous run on Enhertu !! Lost no hair and only mild constipation. Tumor markers in normal range . I’m her2 low. Enhertu by far is my easiest treatment yet
great to see your post. Doing well ! I’m now on Kisquali and Lextrozole. I was on Ibrance, then Piqray, Enjertu and now this. My onc read that trying to go back to a CDK blocker may get some time. Else it will be Trucap for me next (pill for the Pik3ca) or Trodelvy and then who knows! I think you’d do well on Enjertu! Are you her2 low or positive ?
You have been through so very much since you were first diagnosed and I am so sorry that you are going through this. I hope and pray that you will get the answers you need and that your doctor can find a treatment that will work for you and not create side effects. Sending you many hugs and prayers.
Thank you and thank you all for letting me put it out there. I hope to be a resource for others on their journey. I appreciate the prayers more than you know.
I am TNBC and on Trodelvy. Despite hair loss… BY FAR THE MOST TOLERABLE OF ANY TREATMENT IVE EVER HAD. Been on it since Jan and hoping for good numbers like you! Sending good vibes and happy thoughts. Also, that view is amazing!!!! What a background!
You have been through alot but your faith has made you strong! I admire you. Stomach issues are always my problem too. So annoying. Good luck with present treatment
Best wishes to you and hope there’s something effective in the pipeline for your onward journey - I see a lot of new immunotherapy trials but haven't explored them as keep being told I’m still stable. Just keep putting one foot in front of the other and marvel in the wonders of life and wildlife literally on your doorstep!
Allison you are amazing at sharing your journey in such a meaningful way. I have always enjoyed reading your posts as they are realistic and so helpful at sharing tips that have made each different treatment work. I'm sure many, myself included will revisit your posts when treatment changes are needed. I am a firm believer in riding each treatment as long as I can...for me it's a necessity because I have limited options but I also look back at my 5 years on Ibrance and Femara and at about the 2 1/2 year mark my bone scans started to show some progressive changes but fortunately I have a wonderful oncologist and she was willing to let me guide my ship so to speak and not change treatments. From that perspective it bought me time until the progression couldn't be denied and a treatment change was required at the 5 year mark. However I also don't believe in letting ourselves get boggled down by the what-if's...we make a decision, based on what we feel and we have to be prepared to deal with the consequences and not beat ourselves up about it. Please update us when you have your next scans. I'm sure your oncologist has something in their back pocket for you and I'm also glad that you were able to get back to your trusted oncology team...that time was a stressor you didn't need and I'm sorry you had to go through it. Take care and thanks for being an inspiration to all of us.
You CAN do this! I know firsthand how easy it is to get discouraged. I have moments of anxiety when I hear that a drug is being introduced & then the anxiety of what the drug is going to put me through. I was first diagnosed with Stage 1 (it was lower but it had to be staged) in 2005. Had Lumpectomy & radiation & was told I’d be fine. Well, 14 years later, here I am with metastatic cancer in my bones. Started with CA 15.3 at 374. First line of treatment was Ibrance-lasted 3 1/2 yrs on it before TM stated rising & Xgeva monthly. Then Verzenio, then Faslodex-both didn’t last long. Then Xeloda, which lasted 15 months. TM rose quickly by the end of July of 2023. Had testing done & found lesions in the liver. By August 2, 2023, I was started on infusion med, Taxol. After 9 infusions, I broke out in a horrible case of psoriasis! So off the Taxol & on to Adrimycin infusions & Cyclophosphamide oral. That brought my marker down to 206! The lowest I had ever been. My oncologist took me off of it at that point because she wanted to save the rest in case I needed again. The body can only have a lifetime of 500 mg & I had 250mg of it. Then I was put on Methotrexate infusion & cyclophosphamide 100mg-14 days on/14 days off. That last awhile but TM started to rise slowly again so now I get a lower mg of Methotrexate weekly & take Cyclophosphamide 100mg daily. But markers are going up and down- last week up 64 pts but the 2 weeks prior, went down almost the same amount. Also had to take a week off, got another unexplainable rash (not psoriasis). I still take Xgeva every 3 months too. I also have to have my bloodwork done the day prior to treatment because my WBC & ANC are low and many times I’ve been sent home without treatment-just a shot of Neupogen only to go back the next day for infusion. My body is so tired but if markers are up again today, medication may be changed very soon. And here we go again! But I’m not giving up. I have a wonderful husband, 4 kids & 7 grandkids to live for. I’m 67 now, but my only true wish is that I live long enough for the youngest grandkids (4 & twins 2 1/2) to remember their Nanny when my time does come. This is just a horrible way to live and I wouldn’t wish this on my worst enemy. The fatigue is horrendous which limits my ability to do anything at times as does the bone pain. So with all that said, I keep hanging in there taking one day at a time. That’s all all of us with this horrible disease can do. Wishing all of you out there the best & praying for us all.
Thank you so much. We all have such a journey between hope and disappointment. I had a CT scan yesterday and initially looks pretty good BUT they found a blood clot near/in? my port - SCARY? So I am on blood thinners now too. Looks like I will get one more round of Trodelvy after this upcoming week off before we switch. What a roller coaster! The blood clot thing is freaking me out a tad.
Thanks you again for your response and I am sending prayers your way.
Why do you have to change meds? Is it because of the blood clot around your port? My veins are hard to get at, but they tried to put in a port in my right arm a few years back and the vien is just too thin. Then they wanted to put it in my chest and I said I would rather not until it was absolutely nescessary. Did your dr give you any insight to the next med? I am happy for you that overall your scan was ok, except for the BC. Thank goodness they found it. You had no symptoms so yes that is scary. I get my scan next week to see if ever/exe is working. Tms up and down, so we'll see. Hang in there.
Thanks for responding - I have been in pure panic attack mode over this blood clot thing so my worry about next med has been solved ;). My usually worried husband isn't too freaked out by it. I just need to stay off the internet and chill out until my next appointment on the 17th to see what's next.
I just read the CT scan result and it was great so I'm not sure I will have to change. I'm wondering though if I need to have the port pulled? Or if they can even poke me while I'm on blood thinners? So, I'm going to enjoy my week off chemo and try to not fret over things I can't control.
Hi Allison. Good news about your PET and CT results. Regarding the blood clot....I know the thought of it is scary but unfortunately anytime you have a implanted portacath that is not used continuously there is a risk that it can develop a clot within it or at its tip, which requires using blood thinners to dissolve the clot. It's a risk for sure but the benefit of having the port for your infusions far outways that risk in my opinion. It is also very common.
The first course of treatment is start on anticoagulants which you have. I'm not sure they explained how they work but they don't actually dissolve the current clot you have . There job is to stabilize the clot you have and to prevent it from growing while the body’s own clot-dissolving system can start to break it up. Typically you will be on treatment for a minimal of 3 months, however often times they feel that having the cancer itself is a risk for blood clots and having the implanted port is another so don't be surprised if they decide to keep you on an oral anticoagulant after the 3 months. Myself back in 2018 I developed a pulmonary embolism which actually lead to my diagnosis of MBC. My oncologist has deemed it is safer for me to be on a blood thinner for the rest of my life.....as the only risk factor for the development of my pulmonary embolism was the cancer and since cancer is not curable the risk remains.
Allison I hope I can instill in you to stop freaking out. This too will pass and you are on the appropriate treatment to send that clot packing. As for your concerns about your port having to be removed.....most times depending on where the clot is the blood thinners will be enough. If not they can also instill a clot buster drug into your port so there are many options and usually the port never has to be removed. If you did ever need a new one don't worry about being on the blood thinners.....they can work around that, just as they would for emergency surgeries etc. Take a deep breath and celebrate your good scan results. Take care.
Thank you sooooo much! I always respect and appreciate your detailed responses. I am usually pretty unflappable about this stuff so my reaction might be tied to my end of second week on Trodelvy blues. My husband always has to remind me that I will feel better on Monday after the second dose. You have truly put my mind at ease. Thank you.
Good for you. I would too. I am super happy for you that the pet came back well. I do wonder about your port too. It is normal to be concerned, and we all deal with it in different ways, it is human nature. Plus, if your next scan is good too and your numbers come down in normal range, will you continue on this med if you remain stable? Guess that is down the road. Thanks for your response and keeping us posted it helps the rest of us dealing with many issues and knowing we are not alone.
Thank you. We are getting me pre-approved for Enhertu despite all of the confusing mixed messages. So, we will have a plan either way on the 17th - which is the day before my 60th birthday!
Well wishing you an early blessing for your b-day. So many of us have been on enhertu and it has worked for some. Really hope it is one that works for you. Sending positive energyand prayers.
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Xeloda coming to an end!
Bad ca15-3 report
Anyone with experience with Trodelvy side effects and cold capping to save hair? Also how long did you take Trodelvy?
