De Novo Stage IV
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snow-drop,
I have always been curious about the term curative intent. What does it mean to you? I actually don't really understand the meaning. At stage IV, there is no cure so our mo's keep trying different things and when those fail you move on to the next thing/treatment. It's like throwing pasta at the wall and seeing what sticks. I have been NEAD since initial tx, 10 years ago, yet neither my mo nor myself consider me cured. A few of us get many years out of a given tx but it seems very random, i.e. I have never had chemo, just rads and AI's and remained NEAD but very, very few have followed this path with the same success. More importantly, I doubt my mo or any other mo would prescribe this course of tx as a cure! Yes, it's been working for me but I'm more inclined to think of it as a fluke not a cure.
All opinions welcome as this has long baffled me 🤷🏻.
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I think it means they are going to do more for a Stage IV patient than they normally would - local treatment for mets, breast surgery, throw the harshest drugs at it. Where palliative is just giving the gentlest treatment needed to keep the pt stable and to relieve symptoms.
If I’m not mistaken, they say “curative intent” for earlier stage too - “intent” acknowledges that they can’t know for sure you will be cured. True even for earlier stages0 -
olma,
That’s a reasonable interpretation. It leaves me more curious because I have not had what might be considered aggressive tx (I was offered chemo or rads/AI’s and my mo considered either choice to be reasonable). I chose rads/AI’s because I knew I could move on to chemo if I progressed. That was 10 years ago yet I still don’t consider myself cured. So that still leaves the overarching question; what does cured mean at stage IV ? As far as I can figure out it simply means I haven’t died yet but that’s not the same as cured. I think I’m going to start a separate thread on this topic since I find the whole concept of curative intent to be fascinating and confusing0 -
Snow drop- yes, I did genetic testing & it came back “all normal”. They tested 84 genes (!!) so I’m clear there. Good question btw. You guys are amazing. It’s like a secondary onc team! 💪🏼
I understand we are “incurable” but being ogliometastic does give me hope of eventually being stable/NEAD. 🙏🏼
My onc called today & I might be put on Ibrance instead of Kisqali. Not sure if there’s a huge difference?
Prairie, how’s the Ibrance treating ya?! Anyone else, feel free to chime in too
. The more info the better. I’m trying to prepare (mentally) as best I can. Thanks all! x0 -
NCYogi,
I hope you get to NEAD too! I wish I knew the magic formula so I could freely distribute it. BTW, I took a restorative yoga class a few years ago and used blocks and straps frequently and happily. For some crazy reason I resisted purchasing them for home use, but am now happy I did. Take care.
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NCYogi, kisqali is prescribed for a certain mutation, that is why I asked. Ibrance is a magic medication, there are some side effects but manageable. Just remember drink plenty of water daily, and do some light work out, like 10-15 minutes walking, those simple steps help to reduce side effects. Piraisea is right, If you go for radiation first, then give yourself some rest before start ibrance. Low white blood cells is common side effect that cause constipation, water+light activities+vegetables+prune are some of solutions.
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Thank you, everyone. I will keep you posted.
NCYogi, I’ve been on Ibrance for 25 cycles. I started at the usual 125, but I had to be placed down to 75 the next month. I have had about five times throughout where I’ve had to take an extra week break.
Ask away. These women are so knowledgeable.
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Exbrnx- just curious… I know you had rad on the met on your femur & you had a mastectomy so do you show activity anywhere? How often do you get scanned at this point? I agree, the “curative intent” conversation is interesting… and the goal for all of us! X
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NCYogi,
I have not shown any metabolically active lesions since initial treatment, though the bone met is visible on scans, like a scar (mo calls it an artifact). For the last 4 years I have had PET scans annually. Originally I was scanned every three months, then every four months, six months etc. Every time we lengthened the interval between scans I would get a bit nervous but my mo never hesitated to scan if I had any pain or symptoms so I’m now comfortable with an annual scan.
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NC - I've been on Ibrance for about 18 months now and its shrunk my primary and axillary node by half and it very quickly got my three vertebral mets under control which are now showing as stable (MO won't bone scan without a reason and PETs are not offered, so can't be sure of activity vs scarring). I came up a very very surprise BRCA1, which supported the case for ovary removal and freed me from the monthly zoladex commitment.
I'd say the letrozole is my main culprit for aches/pains depending on the generic I get issued, otherwise I don't really have side effects other than maybe a little hair thinning and a bit of fatigue. MO has just lengthened my next CT to five months, with a full spine MRI every other scan session.
I work full time and go out and about but I am not gonna lie, covid was almost (despite the restrictions here in the UK) a godsend as its normalized the WFH situation for the future and not just for my current employer. I can't imagine I would still be full time if I had to stand in full train carriages to work both ways to work in an office like the 'old days'. Now I seem to 'power down' about 3.30 or 4 every day for an hour or so and that's when I maybe lay down and read a book or close my eyes for a bit. No champion napping at all needed, in fact I would suggest staying away from extensive napping where possible.. And exercise is your friend - a little bit every day does wonders.
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NC, I’m new to Ibrance, I’m on my 4th cycle at 125mg. I have minimal fatigue and very loose stools but other than that I am fine. I work full time at my farm which is physically demanding and I get through my days without a problem. By 8pm I’m wiped out but I’m ok with that.I’m HER2+ and on an Ibrance trial.
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Hi to everyone here! I'm so happy to find this thread & such forum. You're so inspiring & knowing so much. I learned & still learning here so much. Thx!
I'm a newbie here.
KBL: answering to your questions in initial post, yes, it was 'out of the blue' for me. My symptoms were neurological (pain in legs, paresthesia, paraparesis) & developed very rapidly (just before & during first total lockdown even for medical services due to Covid-19). After medical procedures resumed, it appeared that the cause for my polyneuropathy was numerous mets. Primary source identified 2 weeks later.
After intensive search & multiple tests. The story goes that interdisciplinary team already gave up finding & decided to do bone biopsy instead ... but due to less pain tried one last BUS with slight hope to do breast biopsy instead of bone. Radiologist said openly that disease is not visible (of course not palpable) but he tried few a bit suspicious areas. Therefore, it was it! Very small, much diffused ILC. Almost no detectable by BUS (as another radiologist explained to me – when it's <1cm).
Best of luck to your upcoming MRI! I just recently had mine.
NCYogi: I'm on Kisqali for a year now, I had no fog (as well as no vomiting, no diarrhea, no anemia, no alopecia (though eyebrows became very thin eventually :-) )). Yeah, since I was able to walk again, I tried to walk as much as I could. Naps of course, you're right. I attributed my fatigue to lack of sleep before my dx & impact of combo of drugs. Now I feel more & more energetic.
Snow-drop: I'm curious which mutation is necessary for Kisqali? I was given Kisqali from the start of my tx, not waiting for response from oncogenetics.
exbrnxgrl: You mean PET scans? Originally you've been scanned PET every 3 months? How about other scans? Also so often? So it can be done on quaterly basis? Even if it shows no metabolically active lesions? It's quite expensive to do, so no need to justify it by extra reasons? On the other hand it is radioactive test so how to balance it with other scans for lesser harm?0 -
Hi spindrift,
I’m sorry you’ve joined us but we’re a pretty good bunch. In addition to the PET scan I also have an annual bone scan. Radiation exposure was a concern and that is why the length of time between scans was increased over the years until we reached the once a year point. My insurance situation is a bit different than most. I belong to an all inclusive HMO, Kaiser Permanente. Any and all aspects of medical care, from pharmacies to hospitals are delivered on Kaiser campuses by providers, including doctors, who are Kaiser employees. There are no insurance approvals. If my doctor feels a test or scan is medically necessary, I get the test. Take care
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Same here, virus restriction helped me taking projects- work from home. My situation is different, I can’t sit for long, so I use wedge pillow, and as long as I meet deadlines all is fine.
Got haircut today after very long time! My new hairdresser, after giving me a wonderful speech about positive thinkings heal cancer blah blah, noticed baby hair is growing, they are tiny but I take it as a good news. I brought up this here to new ibrancer, I lost a lot of hair since radiation and ibrance but seems some new hair is growing back!
Spindi, my apologies, it is piqray I meant.
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Hi! Can you guys give me a quick tutorial on markers CA 27.29 and 15-3? What’s a normal range? (Normal for someone w cancer I guess?) Are these important? I read where some Drs watch them & some don’t. ??? Thanks
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1. The results are not really accurate for some people hence why some docs don't use them. The test tries to detect proteins in the blood that are shed by tumors
2. The exact numbers for “normal" depend on which lab does the test or rather, which type of testing platform they use in the lab. But even results slightly above normal aren’t usually too worrisome. It’s when they shoot up really high that the doctor will want a scan3. If you get results in your patient portal or on paper, the normal range will be shown along with your particular result.
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NCYogi - DRs seem to vary in opinion on the value of CA 27.29. It was explained to me that it may or may not be a good indication of what the tumor/cancer is doing. It might depend on the individual and the cancer. They can go up/down on their own as well as fluctuate with the cancer. My oncologist relies on CTs, but has tested maybe 1-2/year with the regular blood work.
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Spindi, I am happy you found us, and I'm sorry about your diagnosis. Thank you for telling your story and your well wishes for my MRI.
NCYogi, I am one who has my markers tested monthly. Since CT scans see none of my cancer, it's one of the only things I can keep an eye on. Normal is usually somewhere around the 30s. My 27-29 started at 490 and is still high after two years but steady at 285. My 15-3 started at 220 and is steady at 107. I have too much cancer circulating for them to go back to normal range, I think. I don't panic if they go up and down a few points every month. There are some things that can make them raise for a month.
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NCYogi....The jury's still out on my experience with Ibrance. My neutrophil count really dove (below .50) after my first cycle of 125mg, and actually went still lower after the first week off. I ended up with three weeks off and started back on 100mg for my second cycle. I was again under .50 after three weeks of that, but it actually came up after a week and after another was within the "normal range." At that point I started on 75, just started my second week of that, and will get blood work next week to see if ANC is plunging again. I'm leaving for a week-long trip the next weekend and will go off Ibrance if ANC is seriously low again. In that case will probably be pushed to move to Verzenio, which Onc already wanted to do for this cycle (hoping I could take a bigger dose of Verzenio as opposed to lowest dose of Ibrance); but I felt we didn't really have full info on how Ibrance was working. AND I did NOT want to travel with diarrhea. SEs with Ibrance have been tolerable; a little bit of nausea which is not as bad this time, though for the first time I do have loose stools this time. Some fatigue. Joint aches I think from the letrozole. I think some hair thinning but its gradual. I agree with what many others have been wisely saying--exercise (I aim for at least a half hour walk a day, though sometimes this is too much for my back), plenty of sleep, sometimes a brief lie-down in the afternoon. I am working full time, and also found COVID work rearrangements to be helpful as I was working from home and will probably be able to continue to do so as needed... right now things are a little calmer because I'm an academic and it's summer, but I was in the middle of a term when diagnosed and starting treatment.
As for Tumor Marker tests, my understanding from the varied experience I've heard about here is that their reliability really depends on the individual. I also don't think there is a specific "normal"....doctors tend to be more interested in whether they are going up or down than what particular level they are at. That said, I do hope they are reliable for me. My CA 15-3 went from 355 to 109 after 3 months on Ibrance/letrozole; CA27.29 went from 444 to 138. Another reason for me to stay on Ibrance if the decline continues on 75mg.
Best wishes for your early phases of treatment. It may take time to figure out what's right, as you can see. But I'm hopeful that will work out soon, for both of us.
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I’ve been interested in tumor marker tests too. My first MO didn’t use them, when she retired my new MO only ran CEA and CA 127-129 one time. I had numbers within the normal ranges so I think she figured they couldn’t be right. I was kind of hoping they were actually right because I had a liver ablation about 3 months before them. So now just mri and ct to watch for anything, I guess.
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Rosie,
As you know tumor markers are a tool that not all mo’s use. If it’s any comfort to you neither of my mo’s (one moved 😔) did tumor markers. If I had a symptom or pain I would just have a scan. Although this happened a few times, I have been NEAD for 10 years. Take care.
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Thanks exbrnxgrl. Yes, I’m really fine with the scans. I’m at a good point right now and life is pretty normal. It was kind of a confidence boost to get “normal” numbers but then my MO said she figured they weren’t worth doing anymore. So I’ll just enjoy the time between scans and hope things stay quiet. So apparently I’m one for whom the markers aren’t helpful
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Welcome, Spindrift.
NCYogi - as others have said, tumor markets are not reliable for everyone. I feel fortunate that, at this point, they are for me. My 15.3 quadrupled after two months of treatment, then dropped dramatically after a few more (and scans confirmed tumor response). I am currently NED, and I have minor fluctuations just above the normal range which my MO says is to be expected.
I have had bloodwork monthly, but we're stretching it out to six weeks for labs, 3 mos for MO appts, and 6 mos for scans...barring any changes. My MO let me determine the schedule for the lab work, as part of that is for my comfort level -- some reassurance that things are still okay. I'm hoping to be one of the lucky ones that gets four years, or more, out of my first line treatment. If it keeps working as well as it has been, the less time I spend in the MO'S office, the better.
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Thx to all for welcoming!
Good for you, exbrnxgrl! I guess that medical gives many emotional reasons too. I had only 1 PET so far. In March. My MO had to justify the necessity of it. Last time we've met, he mentioned about possibility of another PET (hooray!). Just yesterday appeared that, according to that my only PET, I have no pathological metabolically active lesions now (cleared issue regarding my thyroid) (double hooray!).
I still don't know what differentiates Kisqali (Ribociclib), Ibrance (Palbociclib) & Verzenio (Abemaciclib) (all CDK 4/6 inhibitors), so thx Snow-drop for clarification. So for PIK3CA mutation (for HR+/HER2) is Piqray (Alpelisib).
Regarding oncogenes, by the way. NCYogi, you've mentioned that you've tested 84 genes. Could I ask what kind of test it was? Genomic test / assay on breast cancer is mentioned during registration. With grades of risk. I did oncogenes testing also, but only for 16 genes. Mine mentions only way of doing (done by Next Generation Sequencing (NGS)), not specific name as proposed during registration. Which from mentioned possibilities was yours, which could be mine?
Regarding markers. I am, as KBL or previously SeeQ, the one to whom it is tested monthly too. CA 15-3 from the beginning each month + CEA each second month but from noticing that it started to climb up – each month. Not what particular level they are at but the fact that CA 15-3 steadily was going down to normal while at the same time CEA went up and doubled was my MO's argument for PET (by the way I still don't know the reason of such discrepancy).
prairiesea, you've mentioned neutropenia. Your case (neutrophil count or ANC below .50) has been severe one. How about moderate (maybe even mild) neutropenia case? Has anyone had it for some time? How those, who had or have it, strengthened their blood?
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Spindi - I have consistent Grade 3 neutropenia (I think that is around .8 or so) and yet I feel amazing and, as the phrase goes here, "well in myself". I exercise every day and have all sorts of activities going on around the house, work full time, and I don't have nearly the fatigue I had even when I was at around 1,so I'm not entirely sure what the deal is. In fact, I was surprised last discussion when she told me they were still running low. However, as I feel fine and am not having fatigue trouble, MO is ok letting me ride on the current 100mb palbo dosage despite the lower neutrophil count. My concern,however, is with flu season coming up and rampant Delta covid here in the UK that it may be wiser to drop down to 75mg to ensure I don't have an issue over the winter. Something to talk about at our next chat.
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Dear SondraF! Your example is so inspiring! It's good to know that even 19.5 cycles (I hope I counted correctly) of constant moderate (= Grade 3) neutropenia couldn't knock you out & you're well in yourself.
I work full time too. Feel more & more energetic (with rare exceptions) & already can walk 5km=3miles each day (prior paraparesis – healthy & active lifestyle, bicycling & running each day). So happy to be able to sleep & walk again, thus neutropenia wasn't in my scope of concerns for quite a period of time.
But let me explain what is my deal here. Quoting (alas not allowed to post links at this time): "Grade 3 neutropenia (ANC range, 0.5-1.0 x 109 /L) requires treatment interruption until neutrophil recovery is < grade 2, with resumption at the same dose level. Recurrent grade 3 neutropenia, grade 3 neutropenia with fever (> 101.3°F), and grade 4 neutropenia (ANC < 0.5 x 109 /L) all require dose interruption until neutrophil recovery is < grade 2, with resumption at the next lower dose level." My aim is to stay on first line tx as long as possible, to get maximum dose as long as possible, to strengthen my body & my blood as much as possible & thus to end my any neutropenia as soon as possible.
I didn't pay much attention to this issue prior to my 1st case of Grade 3 which was only after 8 cycles. It was memorable though because of a case of quite frightening food poisoning (1st time in my life) & a call to get Covid-19 vaccine. Now I'm interested again because Grade 3 became recurrent (3 instances so far, good that still interchangeable with Grade 2) & bounced back to normal only on 3 instances so far (2 of it in the beginning of tx). It seems that my tx is working for now, but now I want it to be as little harmful as possible too. I get maximum dose of Kisqali (Ribociclib) e.g. 600mg without any interruption so far. Your example shows that there's no need to worry, even worse case than mine is quite well managed, right?
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I dont know about worry per se, but its more about something to be aware of in case of illness or fever. I was Grade 3 neutropenic after my first cycle of 125mg Ibrance and was immediately dropped to 100mg. If I was still in the NHS system I would have already been dropped to 75mg because guidelines. I went private last year and the MO has more latitude (which is why I went private!) to use her judgement. She has held me once or twice - once when I had a sinus infection last winter (was probably actually Covid) and once before my ooph a few months ago as surgeon wouldn't go in without higher neutrophils (I also got some filgrastim shots to help out my numbers and it did work but I maybe just had a little bit more energy than now).
What I've found is that my numbers tend to dip when I haven't had a chance to be in the sun/go a bit lax on my water. The month I was able to sit in the sun my numbers were high and they've been low since and we've had a lot of overcast days here.
I know there is 75 waiting for me yet but I don't want to have to drop down another level if I don't need to just because of the neutrophil count, and especially as with Covid its not like Im going anywhere anyway. MO is beyond thrilled with the response to palbo, and would also prefer to keep me on 100, but with winter and increasing travel coming up, it may be safer to go to 75.
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Hi, Sondra. I started at 125mg and went straight to 75mg the next cycle after I had to hold a week. I still have to hold periodically, but I just finished my 25th cycle. As far as I know, I’m stable. I say that because imaging doesn’t work great for me, so I can’t tell if I’m progressing. I just keep an eye on my tumor markers, which haven’t ever been normal but stay around the same range every month. If they creep up, then maybe we have the talk. I have an MRI this Friday to see if what they can see is still stable. It was six months ago, so I can only hope.
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Had my lumbar and pelvic MRIs today. Lots of pain lately. The cancer seems stable from the last scan, so that’s good. I do have more bulging and fissures and spondylosis. I have no idea what to do next or where to turn. Should I go to a spine doc again? I do not want to take prescription medication for the pain. I’m going to be asking about fulvestrant because I do think the Letrozole is doing a number on.my joints. My knees, feet and hands are so painful. That seems like it might be the Letrozole. Anybody switch just because? Should I wait until I have progression?
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Hi KBL: Did you consider switching to a different brand/manufacturer of Letrozole? My pharmacy supplies Breckenridge. I dont have anything to compare but recall on other threads some members have benefitted from a change in the manufacturer. Good luck in what you decide.
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