It’s been a long time since I posted. I feel like I have been zipping through all the lines of treatment. I started with mets in the brachial plexus in 2019. My oncologist is recommending Enhertu as my next line of treatment. This will be my sixth line.
I want to know what to expect on this drug. Everyone was so helpful when I started Xeloda and it helped me manage the side effects.
This journey is a a challenge. I’ve been so blessed to have met so many wonderful people on this journey and appreciate your help.
Here is what I’ve been on so far:
1) Fulvestrant and Fasoldex/Pablociclib for 15 months - stopped due to progression in the bone
2) Piqray/Alpelesib and Letrozole for 1 month - had to stop due to severe rash
3) Afinitor/Everolimus and exemestane for 8 months - stopped due to pneumonitis and progression in the glenoid process
4) Xeloda/Capacetabine - for 7 months - stopped due to progression into liver and lungs
5) Started the Tropion trial in control arm - on Gemcitabine/Gemzar for 3 months - stopping due to progression in bones, liver, lungs and nodes.
In Feb 2019 when I started this journey I was ER/PR positive and HER2 - 1+ so HER2 low. In May 2022 my liver biopsy came back ER positive, PR negative and HER2 - zero.
Thanks,
Esther
Written by
Sparky95
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I have not had this drug but if it ever called for a second opinion this is it. Find the best available and see if they agree or have alternatives. Take someone with you.
hi Sparky, I have been on it for 9 mo - for me it has been both a miracle drug and the bane of my existence haha
It melted the masses on my breast within 2 weeks, and continued to work until about 2 months ago. I’m told some people are on it successfully for years.
I’ll likely go off of it, since I’m having pain and some progression.
The negative part of this drug for me has been the 10 days of nausea and exhaustion. Zofran doesn’t help it at all, and I’ve been given 3 nausea meds for it in the past 9 months. I’ve never been this nauseous for this long on any of the previous targeted infusions I’ve had.
50% of people on it will also have alopecia / hair thinning. I had very minor (but noticeable thinning spots on the front of my hair).
Overall I’d say it’s a very effective drug with very inconvenient side effects. Once the side effects lift, I usually feel much better and can do a lot more.
i’m so glad to hear that you had good results for nine months. I am hoping that I can stay on the drug and have it melt away some of my tumors. I really pray that the next treatment that they put you on is effective and last for some time with fewer side effects.
I’m curious to know if for the nausea if you ever tried CBD/THC products? The nurse practitioner was recommending that I use that as well as the Zofran and Compazine. I so appreciate knowing that it was the week of the treatment that was the hardest for you.
Yes for sure, the worst part of it is about 3-4 days after treatment, up until about day 10. Then it magically lifts…
The anti-nausea IV they give me (plus steroid) helps a decent amount for the first 2 days post IV.
funny enough, it’s only in the past week or so that I’ve fully embraced THC/ CBD products again, after essentially opting out of them back in 2020.
In the past I’ve used tiny amounts of cannabis oil for pain, but was always so hesitant to ingest it, didn’t want to get high, etc. I always knew the medicinal and curative properties of the oil and the benefit of smaller amounts for nausea and pain, but felt it wasn’t going to be one of the things I really got into due to the head buzz.
However, 2 years later now and after just burning through yet another (now my 3rd) infusion treatment, we’re running out of drugs for the HER2, and I’m very clear that I’m not doing chemo.
So I revisited the oils, researched a bit more, had a cannabis consultation w one of the doctors at my oncology clinic, and was hearing about the many people who have managed their symptoms and side effects pretty well on it, but as the doctor reminded me, there are no available studies anywhere to be found on the efficacy of higher doses, which I wasn’t surprised by, but was hoping to find out more about.
In any case, outside of that more self-contained type group of patients, there’s still an ever-growing population of individuals worldwide who are oftentimes getting clear scans on much higher concentrations of the oils, in the correct ratios.
I’ve also joined some informed groups on the topic (they have answers for every q, and I have many~)
We’ll see how I do re: nausea etc going forward if I have anymore upcoming Enhertu IVs, but for now it’s definitely helping with pain.
Jury is still out on the curative properties, I know it’s going to take me a little bit to ramp up to those kind of doses but I’m optimistic.
You know, I did that too in 2021. It kept me at bay, and is great for pain. I use rso and coconut oil and use it as a suppository so I do not get the high. Just past the muscle. cannabishealthradio has testimonies and pictures of people on their deathbed and took rso and stunned their medical doctors. It is expensive. You can check online for mike wise and that will assist with your questions. Hope it helps. It totally helps me in my hips and the balls of my femur bones on both sides. I was in a lot of pain and I ordered it again and started taking it 3 days ago. Virtually pain free and my doc knows. Blessings
glad you’ve found it helpful, I do too…actually cannabis health radio I had also done a consult with before starting the rso their YT channel is great! Gives a lot of hope. however looking around and seeing prices (incl their preferred growers) it seemed a bit more pricey so I got mine for less $$ from a reputable grower in CO. Really good.
That is great verbana1. Yes, it is pricey, but I live in Spain and I do not really know anyone. So I buy it while i am home and then take it back with me. Actually, I bought it in europe too, but when they send it it comes in a chunk and when I buy it in the states, it comes in a syring and is easier to fill capsules. I tried the 90 treatment and it just did not work for me. BUT it works great on pain and did seem to keep it at bay. So I am doing the rso and the chemo pills. My doc knows and says that the rso is just analgesic, but I believe it does more. My issue back when I tried the 90 treatment, i did not know what amount I was suppose to take. I also take cbg and cbd too. God help us.
ohh is that the 60 grams in 90 days? I’ve heard even doing half that much is enough for many people. I haven’t worked up to a huge amount yet.
And you’re right in that it does help w pain. Glad you can get it depending on where you are (my ex H is actually from Murcia).
But tbh, as far as healing is concerned, my deepest seated belief at this point is that unless I get to the core of the issue with my body, I won’t fully heal and this will continue to resurface (now we’re on treatment round 4!). I believe that for me, that’s specifically caused by some unresolved dental issues that are keeping my health in chaos and allowing disease to flourish and resurface.
Once I’m cleared for the work I need done, I’ll report back on if/how it worked.
I have been on ENHERTU in a trial since June 2021 and it has put my HER2+ Cancer back away 😀👍
When my STAGE4 cancer returned within 3 months of being NED my Onc and I decided on the ENHERTU trial
I cold cap every time I go which is every three weeks and I ice my hands and feet . I have no neropathy and just very very minimal hair shed
In fact my hair has grown back pretty well from the carbo taxol baseline treatment
I have some nausea but it’s very manageable and the usual constipation that I take senakot and colace for it when it occurs
I also find that I get tired especially the week of treatment
But it’s tolerable
I work full time and I traveled over the summer twice!
All in all I’m happy for this drug
I had 4 small nodes reappear back in May 2021 two are now 100% gone and the other two 90% and no new growth to date hooray !!
Facebook has ENHERTU groups
I have stage 4 endometrial cancer (diagnosed at age 55 June 2020) and although not of breast origin it is the HER2 imbalance thst links me to you and lung and gastric cancer patients that jave HER2 issues
HER2 is a nasty mutation often aggressive and can recur but si far at least for me ENHERTU is working very well with minimal side effects
I’m so glad to hear that you’ve had such wonderful success with Enhertu. It is very encouraging and it helps me to know that the side effects are worth it!
hi-sorry for delay in responding. I have my third treatment oh Enhertu on Monday. Afte the 1st treatment my cancer markers dropped by half and so far have remained there. The nauseea, fatigue and general weakness are tough but in my case it’s hard to say whether the s is all from the Enhertu or from radiation l in September or from the cancer.
I alternate two anti nausea meds and occasionally a gummy but it’s still difficult to keep the nausea under control.
I can’t tell you how encouraging it is to know your tumor markers have been cut in half. I find that I can endure the side effects when I know the treatment is effective. I hope and pray that your next scans shows that it shrank your tumors way down.
I tried to reply earlier but it appears that my reply did not get posted. I had an allergic reaction to the antinausea premed, Civanti, which made my first infusion very long. I got IV Benadryl and Hydrocortisone for the allergic reaction before I got the Enhertu.
After one Enhertu infusion, I ended up with five blood clots in my lungs, three gram positive and gram negative infections cultured in my sinuses, in addition to one staph and one strep infection there. I had hemorrhaging in my eye, pains in my head, an as-yet-undiagnosed problem with my stomach, and pneumonitis with a gnarly cough. The side-effects started a couple of days after the infusion and continued to get worse. One of my favorite physicians pointed out that chemo will affect users dependent upon how strong the user is when starting the protocol. I might not be as strong and tolerant as the next person.
I am so sorry to hear about the bad reaction you had. It does help me to take seriously a development of a cough or shortness of breath. I’m praying you’ve been able to recover. Are they still going to keep you on Enhertu? Blood clots and staph infections have to be very scary.
I had a rough start with my first infusion. I had an allergic reaction to the Cinvanti they gave me as a premed for nausea. Today is six days later and I’m still fighting some nausea. So grateful for meds.
Hey Ester, how are you doing? Your dx from Feb 2019 is the same as me. I too started Enhertu and had my 3rd cycle last Friday. The tumor markers are going down, but very minimal. Most of the others I too have been on. Now, 10 months later let us know how you are doing. Blessings
I’m hoping my oncologist will consider letting me try Enhertu again. I had ILD after my first infusion so they changed me to Trodelvy which lasted six months and now I’m on Doxil.
I had ILD with Afinitor so I know I’m more susceptible yet when I started Enhertu I was just recovering from Covid 19 and I had a reaction to one of the premeds. I keep praying for some treatments that would let me see NED or at least really knock the cancer out. I have some friends in my support group that have had wonderful results. I pray that your 3rd treatment will be a knock out for the cancer.
Thank you for the update Esther. I am surprised that you doc put you on enhertu right after your covid issue. We all hope to find a drug that works for us and go in to NED/remission. Gosh, that would be great. Yet, we are all just grateful that there is another med around the corner if we need it. I really hope that Doxil tackels it. I am her2 low and thought this new med was the game changer for us that are low. Tumor marker's are not decreasing as fast as I was to believe they would. Thanks again.
I was just released Friday from the hospital with a colon infection. This is the second serious infection after starting on Enhertu. It was 6 days after my 4 cycle. The first one was right after cycle 2. I can take the week of extreme tiredness, sleeping 16-20 hours a day which suddenly lifts but the not eating and 5-10 pounds of weight loss per cycle is enough that my oncologist is going to pull me off. I hate to burn a treatment soooo fast but I can’t be in the hospital every 6 weeks with delayed treatment of 8-10 weeks.
On top of the I have even more hair loss , was thinking of shaving my head but now I will see where we are heading next.
Hope my experience is not a shared one! The drug had too many side effects even though my numbers were tumbling!
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Xeloda coming to an end!
Liver Biopsy - (cont)
Newly diagnosed. Versinio. Scans stable. Onc wants Chemo.
Doing good on Piqray and PetScan
