De Novo Stage IV
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Exbrnxgirl,
Saulius has recently taken to posting on this thread, but many, many of us are familiar with him from other threads on BCO. He writes on behalf of his wife and explains the various treatments that she has had. They live in Lithuania, and he is extremely knowledgeable about breast cancer and understands and reads about the science all of the time. He is in touch with the top scientists/medical people in Lithuania and others in Europe. I don't think he needs any defending, but in all of his posts I have found him to be nothing but helpful, offering suggestions to folks on these boards. I certainly hope that he does not take offense to comments made here and that he continues to provide us all with helpful and useful information -- and hope.
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BevJen,
Thank you. I was not familiar with saulius but his signature line gives no indication that he is not the one with mbc. I also do not believe that he intentionally came across as condescending rather just that he continued to beat a dead horse after I said I have a very clear understanding of how to Interpret research. The tone was quite patronizing.
While I appreciate everyone's knowledge I am not too keen on folks who know nothing of my condition nor are my oncologist pronouncing me “probably" cured for reasons I've already mentioned. It is not positive nor encouraging to me at all because it is likely untrue! Saying the words without any basis in fact doesn't comfort me. I am all for hope but not unproven hope.
Saulius,
If my comments offend you, I can only say that my response is my truth and mine alone. If, as BevJen fears, you stop providing us with helpful and useful info due to my comments then please feel free to use the block user feature so you won't have to read my comments as I know that others don't feel the same way I do and should not be deprived of your great knowledge and top notch medical contacts. Perhaps it is a second language issue as well as we are writing about very fine linguistic connotations. I am fairly sure that it is not your intention to be patronizing and I have no wish to curtail your posting.Take care.
PS: I am going to withdraw from discussing this further as it distracts from the purpose of the thread. Anyone who feels the need to discuss it further can pm me.
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Dear all, dear Bev, dear exbrnxgrl, oh no, I am sorry, my messages (and maybe the tone?) must be a second language issue, and I sincerely did not mean to say anything that would hurt you and cause frustration, just wanted to encourage, within knowledge and experience that I have. I know you are many times more experienced (and knowledgeable) than I am, and I do not have MBC myself, but have been "with it" for past 5 years with my wife, day and night, carrying her on my hands to the emergency room after chemotherapy reactions and infections during countless neutropenias, holding my 2 year old baby boy sleeping in my arms and helping her while she is vomiting, sitting in the hospital halls for hours waiting for a doctor to tell me in 2 seconds "that's just the way it is, accept it, go home". I sometimes might seem a bit too optimistic but I am in no way naive and try to base my thoughts on science and links. I was never offended by anyone in these threads - saying what you think and feel is not offensive, it is simply... correct. I'll try my best to be more precise in what I want to say in the future.
Dear exbrnxgrl, this thread is a jewel (crazy I did not find it earlier), sorry to hijack it, and sorry again for my messages, I did not mean to confront you at all. Dang, it is late here, one must also sleep - see you tomorrow!:>
With all my heart, Saulius
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I’m new to all this and any information I can gleen from anyone is very helpful. I was just diagnosed a month ago. I’m still just trying to understand things. I’ve been on Letrozole for a month and Ibrance for almost 3 weeks. My 3 lymph nodes went from 3 cm each to 11 mm and the original tumor that was 1.6 cm she couldn’t find on the Ultrasound but of course scans will be in April. I am not sure why I have not had a FES/PET scan? I had many CT contrast scans. I saw Northwestern Medicine near me has a clinical trial for FES/PET scans so I think I’ll see if I can get in, maybe its an insurance thing.
Since I am DeNovo I am glad to have found this site and everyone on here. I find it to be helpful, comforting and educational. So thank you everyone as you deal with your issues you take time to help others amazing! I do pray that everyone afflicted receives good news on their scans, it just plays with your mind when you have to wait.
I’m not in any position to provide any support just to learn and I thank everyone for that. Hugs to all and warmest blessings.
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Saulius,
I will admit that I get easily upset when I feel patronized. I seriously dislike when I’m assumed to be someone who knows little about my disease as that simply isn’t the case. I am sorry for all you’ve gone through but most of our family members have walked your path too. Experienced? Only with respect to my own situation. I do think tone is difficult to convey online for all of us but can be trickier when not communicating in one’s native language (I taught English to foreign students for many years). As for optimism, I’m all for it as long as it’s reality based. There is a wonderful expression that sums it up for me; Don’t piss on my shoe and tell me it’s raining. So even if the reality is unpleasant I’d rather deal with reality than a platitude. Can we put this to bed now? No foul, no ha
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DDIL, the FES PET has just recently been approved and isn’t being done anywhere near me. I live in Florida. I went and had it done in a clinical trial in Utah back in June of 2021. A clinical trial is a good option, so that is a good idea. There are only a few facilitieswho offer it at this point.
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KBL Thank you. I sent a note to my Dr. Asking to get into this trial. I did not know it was recently approved. Did you find it beneficial
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DDIL, it did finally show the mets in my stomach, which nothing else did. It also showed two micro mets under my right arm that I never knew about. The only thing is it’s not great to show the peritoneal area because it takes up too much tracer. Also, I know you’re not on Faslodex, but you can’t do it when you’re on that. I just wanted you to be aware just in case you ever switch. I’m on Faslodex now. I would have to come off it for a period of time. I would do the clinical trial if you can.
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Hi, KBL. Many thanks to you and NinaCA again for answering my questions about FES PET in the "Lobular Sucks" thread. I haven't reported back in that thread yet, still trying to clarify some things with the radiologist. But my mom had the FES PET - so far it showed the bone mets, which were also on a bone scan but not on the FDG PET. The MO said this confirms Stage IV, no more bone biopsy needed. I cannot stop thinking about how my mom actually felt the lump herself 2.5 years ago...at a much earlier stage, and how after years of continued misdiagnosis, De Novo Stage IV with a tumor that's no longer resectable. I think about this everyday...couldn't understand how all of these have happened.
KBL, we are also in Florida, an hour from Moffitt. I wanted to let you know that Moffitt offers FES PET now, that's where my mom had the scan. It's still quite new at Moffitt. Until now they have only done it for <10 patients in the past 6 months. Cerianna has a production site in Jacksonville, which allows the imaging tracer to be delivered on the same day. So you may want to ask Moffitt if you wanted to repeat the scan in future.
I also talked to the MOs at two local hospital systems. One MO knows about FES. He talked to their nuclear medicine department leader who said they could order the tracer and perform the scan. But they don't have an established protocol for FES PET yet. The other MO did not know about FES, but after I told him about Moffitt and what the other hospital said, he said he'd also talk to their nuclear medicine department to see if they could also plan to offer the test. So hopefully it could help other patients in near future. With the FDA approval I hope more and more hospitals will be rolling out the test.
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wow, my insurance won't even cover a regular petscan. Interesting info.
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ivla, thank you so much for letting me know. I can’t have another FES at this time because I’m on Faslodex. I would have to stop it for a number of months. I’m also on Medicare. I’m not sure they would cover it. It’s really great to know they now offer it so if I need one in the future, it’s much closer.
I can totally understand how frustrating a misdiagnosis can be. The chances the cancer was already in your mom’s bones then is possible. Mine was a missed diagnosis for six years.
Is there any way you can fill in the details for your mom so we can see her diagnosis. You can go to settings and fill it in.
Are you east or west of Moffitt?
I’m so sorry for you and your mom. It’s so frustrating when you know something is wrong and they miss it.
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Gosh, it's been over a month since signing in to BCO. It took me some time to read up on this thread. Sadly, there are a few new names but glad you are on this thread for support. It's a wintry mix today hence not going anywhere. In the past month it's been challenging juggling my father's chemotherapy appts coupled with my schedule. My father is on abraxane and gemzar (3 on and 1 week off). I recall on a few threads that MBC folks utilize these same drugs. Watching a family member suffer is so much different than what I personally face. Somehow, it's like I became the parent, and my father is the child.
In any rate Just wanted to pop in catch up with all of you. Hope everyone has maintained stability or even better NEAD. If progression, may the next treatment work for you. I had a liquid biopsy last month which was a total waste (showed nothing, whereas my tissue biopsy when first diagnosed I had 5 mutations (doesn't PIK3CA stay with you??) Oh well.
Take care and miss all of you. Nothing like having a BCO supportive family.
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Tinkerbell107, hi! I just looked recently to see if you had been on. I know you've been with your dad, but I wanted you to know I've been thinking about you.
I agree, the liquid biopsy did nothing for me either. 99% of it just basically said it didn't know. I would trust the test that showed you had the PIK3CA mutation.
Thank you for checking in.
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I’m cross-posting here.
I got a call from my gastro today with the results of my yearly endoscopy. I started Xeloda and Faslodex last September, so I've been on it five months. At my worst, I had the cancer in three parts of my stomach, called the angularis, antrum, and body. They now say there was no cancer found in the angularis and antrum, just in the body. I have been able to eat again since starting Xeloda and Faslodex and have even gained nine pounds back. It's the most I've been able to gain since starting Ibrance and Letrozole. To me it sounds like it's working better for me. My spine is no better but no worse, so it's stable right now. I'm so grateful.
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good news KBL!
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KBL yay!!!!
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Thank you, Olma61 and DanceMom.
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KBL: You are so sweet. It's BCO members like you that make all the difference. It's wonderful to read your good news. So glad you are eating again. Lately I'm stress eating. I need to cut back, especially chocolate (peanut butter easter eggs).
Take care. I'll be in touch in a few weeks.
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Dancemom and KBL, the doctors did say they had to fight hard with insurance...I really appreciated their efforts. I am not sure if insurance would cover the test another time. But the PET department folks said they are doing more tests now as more insurances are agreeing to pay for it.
KBL, thanks for the reminder - I will look into updating the setting with the dx information. So happy for your good news!
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Itchy Rash started a tiny bit 2 days ago, It first started on my feet now it’s all over 2 days later. I am guessing its from the Letrozole my Onc says I can try Anestrazole but I read it does the same thing. Did this happen to anyone else and what did you do? Will it just go away. It’s very uncomfortable.
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Hi KBL,
Well it sounds like you received some great news. So happy to hear you can eat again and doing much better. I’m happy to hear about your scans sounds promising. That’s a good feeling
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KBL,
Happy to hear about your scan results. That must have been a a sigh of relief and happiness. That’s pretty good news. I am glad you can eat again and doing much better.
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Thank you, DDIL. When I was on Ibrance and Letrozole I did not have a rash. I’m sorry I can’t help there
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KBL - yay for good results from your gastro! It sounds like you're on the right track.
Tinkerbell- good to hear from you, but sorry you're having a tough time with your dad.
DDIL - sorry, I've never been on letrazole. I'm on anastrozole and it has not given me a rash. I did figure out I can't take a multivitamin for 50+. I tried two and both caused a rash (like heat rash). I never had a problem with regular multivitamins before, so I don't know if it's a combination of the meds I'm on now, or something in the 50+.
I have my first visit with my new MO tomorrow. Did mention the other new MO I was going to see was a no-show? That was an exercise in frustration. I'm hoping for smooth sailing tomorrow.
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SeeQ, how does a doc just not show up? I hope they gave you an explanation. I hope your new MO is a good fit.
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KBL - Exactly! She was no longer seeing patients at that particular location. Never mind that I confirmed she was before I even requested a referral to her, and confirmed it twice when I made the appointment. As I was sitting in the empty corner of the clinic (used by this onc practice one a week), talking to the schedulers about my appt, everyone agreed I had an appt at that time, in that location. Evidently, someone forgot to tell the new New Patient Coordinator that the doc wasn't going to that location anymore! Interestingly enough, I just received an invitation to compete a survey for them. I can't wait!! The biggest bummer is that location was 30 minutes from my house. Now, I have to travel over an hour for my appointments.
The good
news is that I liked my new MO. He ::gasp:: actually read my record before he walked in the room. Seriously, he seemed to be very familiar with the details of my history. He is going to send my original biopsy material for next gen genetic testing so he'll have that information available whenever I progress. He did mention he had patients on Verzenio for a long time, and I did not ask for specifics on that (too chicken - I didn't want to hear a shorter number than I'm hoping for). I go back to see him in two months and scan again at the six month mark, which should be later in May - all barring wonky bloodwork results. My 2-year cancerversary is in June, so life is good...for now. <--- I think we always feel that qualifier, even if we don't say it.0 -
SeeQ, I’m so happy you like the new MO. I’m a huge believer of everything happens for a reason, but I’m sorry you have to drive so far. And I’m also glad verzenio is doing its job. It’s amazing what these drugs can do. I hope you can get many years out of verzenio.
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SeeQ; good to hear you like your doc, that might make it worth the drive. Thank you for the multi-vitamin advice. That’s worth investigating, I’ll stop and see what happens.
Congrats on 2 years!!
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Saulis: I couldn't find the right thread to post so I will use this one. I see your proximity to Belarus and worry about the war spreading from Ukraine from Russia with Belarus's blessing. I hope you stay safe. You are a wonderful, warm human being who cares deeply about your wife, son and the rest of us ladies. Stay safe!!
To All: PET scan at the end of the month for me. Trying not to let scanxiety creep in too soon. I guess I could Google it but what is the difference between a FES PET and a PET?
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Hi, Elderberry. I am with you, stay safe, Saulis.
An FES PET uses a different tracer. It’s called 18-fluoroesteodial. It detects estrogen receptors. The standard PET uses a glucose tracer. I believe the FES PET is better for lobular patients because we tend to carry more estrogen. I had one last June that finally showed the cancer in my stomach. I can’t do one right now because I’m on Faslodex.
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