De Novo Stage IV
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a question to all, how you inform about your pet scan results? My other scans or mri the reports show on mychart and MO would send a brief message. Radiology clinic made me sure pet report was sent to MO yesterday but I still have not heard a word from MO. any suggestion would be helpful, thanks.
Hi KBL, it was bad experience, I hope you are doing better with zometa.0 -
Hi, I-beat-it. I would definitely call the office tomorrow if you don’t hear anything.All of my scan reports are usually in my portal within a day or two after.
Thank you for remembering. My second infusion of Zometa was much better. They infused over an hour, and I had very mild pain the next day and no fever. I appreciate you asking.
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I-beat-it , I'm sorry you're having such a hard time with the scans. So far, I've just been able to get lost in my mind to block it out, but I know a few people who are really claustrophobic and can't do them without meds. Re: getting the results, I've only had the one PET/CT - the results were in-office; that MO didn't use a portal, at all (don't get me started). New MO uses the portal, but it's not a very good one, comparatively. It sounds like results from tomorrow's scan will be in-office on Monday. I live in a small city, and most of the medical offices here are not exactly cutting edge.
KBL, I'm glad the second Zometa treatment went better for you.
I got a little good news today - my TMs dropped about 450 points from last month, after spiking right after starting treatment. This is the first indication I've had that this treatment might be working.
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SeeQ, thank you. I appreciate it.
450 points is awesome. Mine have only gone down about 100 and 150 points for the other since June of last year. They have pretty much stayed there. I feel good, though. Can you remind me where yours were at.
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ladies thank you so much for your support, I feel good when I am reading your supportive posts.
KBL, I am happy for you that zometa infusion works for you and that your care team provides good care for you.
SeeQ, that is excellent, congratulations for this dropping.
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KBL - My CA-15 started at 216, spiked to 879, then 835 and 389. Not quite back to where I started, but headed in the right direction.
PET/CT is done and was uneventful, other than I froze my hiney off while waiting for the injection to circulate. Next time I need to dress like an Eskimo and bring MY OWN blanket! (Never mind that it's muggy and 85 degrees outside) They did give me heated blankets during the scan, so that was nice. 😀 And I should have the results on Monday. 😀 😀
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Thank you, I-beat-it.
SeeQ, I’ve heard they do that when cancer cells are shedding (not sure that’s the correct term), but they can make the tumor markers go up before they come down. Hopefully that means this new med is working.
They should have offered you a heated blanket then too. I know I’ve gotten one. I’m glad it’s done. Let me know what you find out.
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For all who are having PET/CT scans this month I wish good results. I had PET/CT scan this morning and got my results on my portal this evening. Quickest turn @ in my journey. Initially I was terrified to open up but thankfully had good results. The unexpected finding was multiple large gallstones. I don't have any symptoms, pain, etc. Not sure what the next step is but I do wonder if the calcium supplement is a contributing factor. I read there may be a connection but need to take for bone mets. Just wondering if anyone else had a similar finding and a treatment plan. thanks
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Tinkerbell,
I follow this thread even though I wasn't de novo stage IV.
I have had a decent size gallstone (a bit over 3 cm) for years, and oddly, sometimes it's mentioned on my scans and sometimes it's not. My internist years ago was appalled that I didn't want to have some sort of a procedure to get rid of it. But I've discussed it with my gastro doc, and she said that if it's not doing anything or affecting anything, we should just leave it alone.
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BevJen: Thanks for your response. My first thought was let the gallstones alone until becoming problematic. Then again, I'm a less then more type of person by nature. So I wasn't sure if being proactive is necessary for a GI consult. Do you take a calcium supplement? I may switch from calcium carbonate to calcium citrate. Calcium citrate may be less aggravating.
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Tinkerbell,
Yes, I take a calcium supplement. However I was not taking calcium when this first showed up years ago. So I'm not a good example for you, I guess.
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Hi Tinkerbell107, I also found out that I had gallstones. For me, it started with my first chemo regime. My liver reacted to the Taxotere and Perjeta. Once I switched to Abraxane and stopped the Perjeta, the liver issues subsided and I have had no issues with the gallstones. They are probably still there but I have no pain or discomfort. When I was initially having problems my liver doc prescribed a medicine that was intended to help dissolve the stones over a long period of time, but when my liver levels went back to normal he said I could stop taking the medicine.
I’ve been taking a half dose of calcium with Vit Dfor many years (pre-diagnosis). I take half because I get a good amount of calcium from food and I read that too much calcium is not good for the heart. I have not heard of any issues with calcium and gallstones.
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Cyathea: Thanks for the suggestion cutting half dose with the calcium. Who knows if it will help with the gallstone issue. I find it odd the gallstones showed up on this scan rather then my last 3.. I read drinking apple juice and apple cider vinegar may help.. There is so much information on the internet, who knows what is accurate or inaccurate, despite notions from reputable sources. These multiple large gallstones are not bothersome. So as BevJen suggested I will let it go. It's ironic you can have a great scan "No FDG avid malignancy" but now this instant paranoia, always looking for something which wasn't part of my being before MBC. I need to work on practicing gratitude daily regardless of my diagnosis, and find that inner peace again. Be well...
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Hi All, despite of recent clear scans, I still decided to stop working & I am fully supported by my oncologist & other members of my care team. I have been working from home since my diagnosis in late 2018, but cumulative sign effects of treatment plus few changes at my job forced me to make this decision. The social worker at my cancer center has reviewed my case & assured me I will have no problem with approval for private SD & LTD through my work & she said I will be qualified for social security disability as well after my private LTD get approved. I hope the application process will go well & this decision will allow me to focus on my health & family. Hugs!!
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42young, I also made the decision to stop working. I haven’t had clear scans, and the medications and other pain issues let me know it was time. I was self-employed, so no SD or LTD, but the process for SSDI was smooth for me. Good luck, and please let us know how it’s going.
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Went for a CT scan yesterday. Decided to go to a different facility for a new set of eyes. I was surprised that I didn’t have the barium, it was the water and iodine. I got the results within two hours. I’ll have to call doc on Monday. They put that my indication was breast cancer to bone and esophagus. No, that would be breast cancer to bone and stomach. I’ll have it amended.
Anyway, everything stated shows no issues in my other organs. I just am confused why it never sees the cancer in my stomach or bone. Someone looking at this report would have no idea I’m teaming with cancer. I’m so grateful that I don’t have any fluid or things like that in my organs.
In the last two CTs they haven’t been able to see my colon because I’ve been constipated. I will have to really watch that next time. How do we know that it’s not cancer causing the issue? Anyone have mets to their colon? I’m not saying it is, but how would I know?
Granted, my diet has been horrible. I don’t gain weight, so I’ve been eating crappy. I really have to eat fruits and vegetables, which I haven’t been very good at.
I’m considering asking my doc what she thinks about not having CTs every three months. It doesn’t really show a picture of what’s going on, so why bother? Do any of you not get imaging? I would assume if I have symptoms or issues, I could get one.
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Results in two hours, wow! It takes me days to get results. But maybe that's because I like to wait and get the results from my doctor. The old imaging center I used to use would always make comments questioning my care. They just didn't get stage IV BC protocols.
I get CT scans whenever there are new symptoms. This year I've had two. But in the first year or so, I believe I had scans more frequently.Because we are palliative status, we get more say in our treatments than someone on a curative path.
I eat poorly, too. I just don't enjoy cooking and I'm inattentive. I've had to throw out the last two things I cooked. Sandwiches are safer. I take fiber supplements, and try to drink enough water. I also get acupuncture, and there are certain points that always get the bowels moving (not in an urgent way - just later that day, I mean.) Another thing that helps me: eating an apple a day. I like to slice it and spread peanut or almond butter on it.
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KBL, it was smart to use a fresh eye to look at your scan at new facility. I actually have the same question, while scans are not able to show distance disease (as my MO wrote on visit summary) why bother to take scans and put my body on X-ray exposure? I also learned that it is standard protocol, we have to do scans every few months! Despite MOs know about the fact, they order scans anyway to not to be blamed later, but they consider other factors like blood tests as well, I am with you in this scan things. Now look at the positive side, it is great news when your scans returned clear, congratulations on this good news.
about nutrition, fruits and vegetables, I usually look up healthline https://www.healthline.com/nutrition
Edit to add: https://www.healthline.com/nutrition/foods-high-in-antioxidants
I hope that helps.
Happy weekend everyone!
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It is interesting to read about the different approaches to scans and monitoring. I have been NEAD for 9 years. Initially, I had PET scans every 3 months. Eventually we moved to every 6 months and for the last 3 years I have an annual PET. Of course, if I have anything that seems symptomatic we scan as needed. I almost always have results within hours. My mo does not do tumor markers. I have never had a CT scan (well, not for bc. Recently had a head CT for monitoring a sinus polyp). A big reason why my mo wanted to not routinely scan as often was her concern over too much radiation exposure.
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Thank you, NineTwelve, I-beat-it, and exbrnxgirl.
Yes, things are so different for each of us. I’ve never been NED, even though imaging doesn’t show it. Only biopsies tell the story.
Congratulations, exbrnxgirl on nine years. That’s amazing. I feel fortunate that I’ve had it for seven but have only known for a year and a half, so technically I’m just a few years behind you. Im so grateful for the type of cancer I have. It’s been slow. I hope it continues to slow down.
I’ll look at the links, I-beat-it. I’ve tried so many different things. I’ve had this problem for quite a while. I go great for a few weeks and then it starts all over again.
I’ll talk to my family and let you know my decision.
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Tinkerbell - WOW on the same day results! and so glad it was good news.
42young - congratulations on your decision. It's interesting. I was required to apply for SSDI before submitting my LTD package, but I'm sure that has more to do with my employer than anything else. SSA was only interested in how much I was earning when I applied and what benefits I would receive after retiring - which I could give them an estimate. There is a 5 month waiting period period for SSA, so I wouldn't want to delay any longer than necessary.
KBL - WOW again on 2-hour results! It must be frustrating to know there's cancer that doesn't show up on the scans. And I can see your point, if the scans don't show it anyway, then just why keep on with it? Re the constipation, maybe you put in on your calendar to work that issue a few days before your next scan. I didn't know until the day of my PET/CT that it's better to not excercise for a day or two before the test, so "oops" on the elliptical time the day before. I added that to my 'bring a blanket' note.
I ran across this artical when looking for info on flare phenomenon - I didn't find it particularly helpful, but those of you considering the possibility of fewer scans might find it interesting or pertinant to your situation: https://www.gotoper.com/publications/ajho/2016/201...
I got my PET/CT results today - great news! - current size is of my largest tumor is 7.9 cm, down from 13.7 cm on initial scan, and the spot in my breast/chest wall was not apparent on test. There were a couple other things in the report that I need to look into, and mull over, but I am so relieved to have confirmation that the Verzenio is working! And thrilled that my next scan won't be until after the holidays! Woohoo!
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SeeQ - that is a fab response! Is that your largest liver tumor?
I'd love to see NED but I'm not sure I ever will. Sometimes I wonder if I wasn't moved down too quickly from 125 (my neutrophil score was only .9) but well, it is what it is.
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SondraF - yes, that's my largest lover tumor. The next largest one identified on MRI was 3.2 cm to start, plus numismatic smaller tumors, PET-CT report only addresses the largest one. I think it's logical to assume the smaller ones are shrinking, too.
I'm hopeful to get to NED just on the Verzenio. If not, I'm keeping local treatment in mind to discuss if tumors get to be small enough and are in a safe location. I think the Verzenio generally had less effect on neutrophils, and I've been able to manage the diarrhea (#1 side effect) well enough. My liver enzymes are slightly elevated again, but MO reviewed and it's not enough to alter treatment - will just keep an eye on them.
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SeeQ, great results. I'm so happy for you.
I'm going to try things to get me regular. I'm eating more fruit and taking the generic Miralax daily.
Today has been one of those days where I've already taken two naps. I will try to look at the article a little later.
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I beat it, I was claustrophobic before I started any of this so I'm constantly dealing with double scanxiety. Scanxiety about the scan itself then scanxiety about the results. I truly dread them. I try and talk myself down but I get really worked up beforehand. I have a bone scan scheduled for next week and I'm trying not to think too much about it. I will definitely be taking Xanax or Ativan before the procedure this time. It's exhausting.
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I beat it, I just read your post about SBRT radiation. I was diagnosed in Nov 2019 with one single met on my T5. I did not understand at all why one single lesion could not be eliminated and my cancer technically cured. I did a lot of research and read about SBRT. I'm actually the one who suggested it to my oncologist. He sent me to the radiation onc and they said, yes, we should be able to get rid of it. My Rad Onco had to fight with the insurance company to get the SBRT approved and after several denials, they finally approved it. I received the radiation at the end of March 2020. I will be getting scanned next week and we'll see if it worked not. I'm extremely hopeful that it did. With modern medicine as it is and the use of high dose radiation to eliminate inoperable tumors I was not willing to take no for an answer. I was so terrified and upset when I was told about the lesion on my spine and I really wanted the radiation done because I believed it was my only chance to be ever be considered cancer free again. Some doctors are more willing than others to acknowledge the idea Oligiometasis and to treat it like it's possibly curable. Maybe it's just wishful thinking on my part, but I'm not ready to give up hope yet.
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ReneV your post inspired me, thank you so much for sharing your experience. I'll be tough on my MO next visit and will discuss with him about the SBRT this time with confidence, “I'll take no for an answer" I like it 👍🏻 I hope your scan goes well and that you get good results. Are you in systemic therapy, targeted+ hormonal therapy ?
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Renv, I am oligo too with a single bone met in my hip (and a few in my brain but brain mets aren’t considered the same as body mets). I had rads done as part of a trial to see if radiation to oligo mets provides a survival benefit. Hopefully it does.
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I Beat It, Targeted Therapy. I'm on Verzenio 100 mg 2x a day, plus Fulvestrant and XGEVA injections once a month. I've been meaning to put in all my info regarding my cancer, I just haven't had much time lately to do it. I was originally diagnosed with Stage 2B lymph node involvement in January 2016, did the whole chemo, lumpectomy, radiation, arminidex thing and in November of last year they discovered a lesion on my spine. I was devastated as I'm sure we all were when I found out my cancer had metastasized. Sad and scared beyond words. I thought my life was over until I talked to my doctor got a second opinion and did a bit of research. Now I'm in a better place but would give just about anything to go back to the place in my life where cancer wasn't a factor. But here I am, and here we all are. I'm glad to have found this message board because it has helped me to understand more about this crazy disease. I wish you luck, actually I wish all of us luck.
illimae, I too hope the radiation increases my chances of living for many more years. How were your brain mets found?
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Renev, I had an unrelated tension headache from radiation to my left breast but being HER2+, my MO ordered the MRI. The mets were few and tiny, so we zapped those and the few that have popped up since. I did remain stable below the neck since diagnosis though, so I feel like systemic therapy did it’s job so far.
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