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NEW TO STAGE IV……WHAT ABOUT THESE TREATMENT DRUGS?

shanagirl
shanagirl Member Posts: 298

BONE METS AFTER 13 YEARS NED SUDDENLY IN TREATMENT AGAIN

So in January 2023 My Oncologist sent me for scans following a high CANCER ANTIGEN 27.29 blood test, which I’ve gotten every 6 months with followups with him. Since 2009 until recently my CA 27.29 blood test was always Low ranging from 22 to 26, 27. It’s been like that for 13 years since my first treatment of mastectomy, hormonal therapy Aromasin and Rads. I’ve gone back every 6 months for follow ups with him, and one night he calls me to tell me my CA27.29 jumped 84 suddenly and sent me in for scans….Bone PET/CT MRI, so her I am now in treatment again, now on Drugs that I am just trying to get used to the side effects. When I was in Treatment with my first DX In my mind I thought I just have to get used to the effects but I knew it would only be temporary. But now with this new DX I realize I will now have to be in treatment with these drugs I’m not used to for the rest of my life or until they stop working. So I know it’s going to come back somewhere else. These are the therapies I’m on now…

Verzenio (abemaciclib)

Xgeva (denosumb)

Faslodex (fulvestrant)


Comments

  • threetree
    threetree Member Posts: 1,148
    edited April 2023

    Shanagirl - Real sorry to hear about your situation. Wow, 13 years! This would be a real shocker after all that time. I wish I could help you more with the "what about these drugs", but I have myself only been on Faslodex for a few days. I can say that so far I have experienced a real low energy both mentally and physically. Nothing sounds like fun either. I also have muscle stiffness, cramps, tightness. So far none of the nausea, headaches, etc. that they say can happen. I just wish it hadn't taken away my "joie de vive", and added to the back pain I already have. Since it's only been a few days, I don't know if any of this will go away, or if more side effects will emerge. Just waiting and watching until it's time for the next shot which I am not looking forward to.

    Interesting, mine also was seen to have come back on scans last January, after about 4.5 years. I am curious about just when you actually got started on the Verzenio, Fulvestrant, and Xgeva. I will be adding Verzenio also and probably Zometa. I have thought that it's been a long time from discovery of the mets to finally getting some treatment, so I am wondering just how long since the discovery in January this has taken you.

    I think you can find out a lot more about these drugs if you read through the bone mets thread. That's where I started, and I had asked about the same question you have here, i.e. "what are these stage 4 drugs like?" I got some answers and you can see them there. There is also a Verzenio specific thread where it's exclusive discussion about that drug in particular. I don't know if there are any threads just for Faslodex. I hope you are doing OK on the drugs you've been given, that they don't cause more trouble as you go along, and that you get a real long run with them.

  • seeq
    seeq Member Posts: 1,059
    edited April 2023

    Shanagirl- definitely check out the Verzenio for Stage IV thread. Weninwi (I think) just recently put a very descriptive post about her experience with Verzenio. And there are strategies for dealing with the GI issues, if you're having them.

    I have been on Verzenio since July 2020. The fatigue in the beginning was pretty overwhelming, but it improved over time. I reached NED in April 2021, and shortly after that I requested a dose reduction to help alleviate the GI issues - which it did help, but didn't completely resolve. I also felt better, and after a few months, I noticed some of my thinning hair was growing back, so, bonus!

    It takes awhile to wrap your mind around the Stage IV dx, but you'll get there as you settle into a treatment/scan routine. Oh, and if you've been consulting Dr. Google, there have been great advances in the last several years, so anything before 2015 is probably out of date.


  • shanagirl
    shanagirl Member Posts: 298

    ThreeTree, Hi😊I don’t think my Mets showed itself until the traveling tumor cells became obvious on my CA27.29 Cancer Antigen blood test. After going to my Oncologist every 6 months for followups since 2009. My CA27 test was always low and stable rangining in numbers of 26 highest 30 but always stayed steady at 26 - 27 for 13 years  since 2009. Then in Jan 2023 my Onc called me in the evening to tell me he was concerned because my CA27 jumped to 84 at the last blood test during my follow up. He wanted to schedule me for Bone, CT/PET and MRI. So I went for the scans, which showed Mets to my spine, sternum, ribs sacrum and ilea. He immediately met with me and put me on VERZENIO  and shots of Xgeva & Falsodex.

  • gigil
    gigil Member Posts: 896

    I just got my 6th round of Faslodex injections today. I get them both at once. I have back muscle cramps a few days afterward, some night sweats, and my urine has an odd smell (from the cod liver oil they inject the medication in). I am also on Ibrance. We have been reducing the dosage to make up for a low ANC (absolute neutrophil count). Sometimes I have to take longer than a one week break. Overall I am doing pretty well. I went 11 years before discovering I was Stage IV. I was crushed, but I am doing much better now. The meds are getting better and better. I pray soon they will have mRNA technology to eliminate this disease. Best wishes and big hugs to you.

  • threetree
    threetree Member Posts: 1,148

    Shanagirl - Thanks very much for letting me know more about your story. Like you, my oncologist met with me immediately, but getting the drugs seems to be taking a very long time. I've been on the Faslodex for over a week now, and am having to have repeat scans today, because it's been over 2 months since the ones they did after the initial stage 4 diagnosis. All of that seemed to be because of the radiology dept being so backed up I couldn't get the biopsy of one of the spine mets done and confirmed for a good month. I actually went to the ER last Sunday due to sudden sharp chest pain and what they found after a CT, was a sternum fracture - this in addition to 2 compression fractures in my spine. All of this has happened since the initial discovery of my stage 4 in late January. Just like I thought, it is spreading and getting worse while they futz around getting me the drugs. Their explanation for all of this seems to be staffing shortages and department back ups. The Verzenio I'm to take is being "processed" by Eli Lilly and they are supposed to send it to me, but they can't tell me when. They said to call them back in a week if I haven't heard anything by then. I'm just so glad that you have gotten all of your treatment lined up and started and I really hope this works well for you. I'm going to keep watching for your posts as we all move along, as you have some similarities to my situation. Thanks again!

  • bigpeaches
    bigpeaches Member Posts: 238

    We have a similar story, I was re-diagnosed after 10 years. The only drug we share is Xgeva and the worst thing I've experienced after 5 years of being on it, is the actual shot, it burns terribly bad. Really no side effects for me though so I hope that for you!!

  • shanagirl
    shanagirl Member Posts: 298

    Hi ladies,
    It’s been a few days since I last posted.
    I met with my Onc Monday, May 1. He was very happy with my scans. He said most of the previously seen FDG avid osseous metastases no longer demonstrated uptake above bone background activity. A right sacral lesion remains mildly FDG avid, but decreased from prior scans. My CBC & Metabolic bloodwork were normal. He’s monitoring my CA 27 and it's been dropping lower. lt went from 84 (High) to 65.(still high but trending lower)…….I got my 3 injections also.

    So I asked him if I can skip my morning dose of Verzenio and just take the nightime dose for for the five days while we go to Florida next week. We had our first Great Grandchild born in January, and are finally flying down to meet him. l was first diagnosed in January and started treatment then so we weren’t able to go down there until next week. I’m relievedI won’t have to deal with the Verzenio cramps and side effects that always start in the morning after the first dose. It,s really awful, you guys. I lost almost 30 lbs since January and have spent so much time in the bathroom.🤢. Still trying to manage these side effects while trying to have a normal day without lot's of bathroom trips.

  • justme1964
    justme1964 Member Posts: 12

    All started 2018, doing great, mammos came back normal. Then bam, 2022 my mammo and they pulled in the boob a little more than before and found a tumor in the armpit, after scans found in the spine, hip, and the tumor in the arm pit..

    PET Scans are now steady, even some areas resolved… bam.. tumor markers were high at diagnosis, went down, and now tumor markers are increasing but PET/Scan are steady. so now another PET/Scan is a precaution.

    With that said, the only side effect I get is tried the day I get my faslodex injection…

    Just pissed, they should have women get pet/scans or MRI or CTs for diagnosis breast cancer, mammo are not accurate at all. they miss stuff and give women, like me, false hopes that everything is OK… I truly believe there is no such thing as NED.. because you never know what they don't see..

  • shanagirl
    shanagirl Member Posts: 298

    @justme1964 I’m sorry you are feeling frustrated and not really knowing what’s going on with your treatments. One thing I just want to say is that I feel Breast Cancer is an extremely insidious disease. I too wonder about NED, as for me it never showed up during those 13 years in previous precautionary scans… I believe those cancer cells were always there hiding in my bones this 13 years of NED. But then suddenly went traveling into my bloodstream which signaled they were causing progression in my bones….which caused my CA/27 to jump from 26 to 84, prompting all my Onc to scan and found all the bone lesions. So Yes, I really feel NED only means no evidence but could be hiding out somewhere without any visible progression….But I do feel the cancer antigen blood tests are important for identifying traveling cells which means they can end up anywhere…IMO💗 Just be watchful with your blood work because this is a VERY INSIDIOUS DISEASE.