My Husband, My Life, My Love, My Family, My Cancer
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Cookie, it was a nice night out. They took me too this place called Mr Puff I think and they had these balls, the ones they ordered were a leche and caramel drizzle and OMG, I felt my diabetes calling, I don't have it but it was very good and really sweet.
We stopped at a pet store and the kitties were really cute but Tigger and Ava would not be able to stand another cat. Cutest pair of bonded black kitties ever. I also picked up a few grocery items, they turned out expensive but I do not care, had some extra credit on the shopping card. No junk food but did get some muschrooms, white and black beans and cheese. Baby spinach was on the menu too. Croutons and ranch dressing. I am looking forward to meals. Have to watch the frozen meals as they have more sodium, could always split them in half maybe. I've decided more greens are on the agenda, check the sodium and keep myself moving as I really have lost exercise but I will be able to do more now that there is not any snow about.
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Intolight - hope the transition to Oserdu goes smoothly. I have changed medicines many times, and it takes an adjustment both for the body and the mind. Sorry the lesions have grown, hoping this new medicine pushes them back.
Threetree- I hope you have a good talk and gain some clarity on the scan results. I’m in a similar place with scans needing clarity. Sounds like you like your MO and it’s wonderful that they are positive . That helps so much I find. I see mine on Friday.
My local bagel place microwaves the eggs , which is where I learned about it. Such an easy clean up and tasty too.
Mara - your meals always intrigue me. Glad the smaller microwave worked out. I hope you had fun tonight.I’ve been super busy at work and had to go inperson today to campus to get my laptop camera fixed at the help desk, hopefully they can fix it quickly. Since I work on zoom, felt weird not to be able to see to be seen. Though my students never turn on their cameras, lol. Took the subway and could feel the fatigue walking up and down the stairs. Though my mind is clear, body is a dragging lately. One day at a time.
Beautiful spring weather here, enjoying the birds song during the day and the almost full moon tonight. The red moon tomorrow should be something interesting and then a lunar eclipse... Wishing everyone a good night ❤️4 -
@threetree -I responded about biopsies in the liver mets thread. I also wanted to say I hope you got the answers you wanted from your MO today.
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Well I blew it on the Walmart trip. I did not figure I needed to set an alarm because I was in bed9 hours before I would have had to be up to get breakfast and get ready for the trip. Nope, body was not having that, I slept in til 1130 am instead. Must have been the Herceptin plus the trip that tired me out, do not remember being all that tired but there you are. Called and cancelled both trips. I am still pretty exhausted now which is normal, may just stay home do regular chores, get changed and do indoor and outdoor walks, I will see what I feel like after meals.
I did shop a bit last night, I wanted Walmart but SIL refused saying it is a US company. If I need Walmart stuff, will deliver it as I am not boycotting anything that is more reasonably priced. I am not that political, using Amazon for the cat food and litter as well.
Lots of greens purchased last night, white beans in a can, more cheese, one little brussel sprout. Putting in more greens to give potassium and am going to use less salt, look at packages to decide how to split things up to eat everything I want and be more sensible about sodium. Also more active inside or outside, start small, build up to more.
Not sure what I want to have for breakfast, wanting some sort of salad as I did pick up baby spinach and still have cabbage too, thinking I would add some beans and cheese, chopped in with a few croutons, always keeping track of the sodium now so will check package and figure out how much to have so I do not go overboard. Eggs and spinach are a good meal as well, english muffins are good too.
I do hope everyone has a good day as well and am in pockets for anyone who needs me.
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Intolight - Thanks for your thoughts - I think about you too when I deal with this liver stuff, because I know you had some long term, but stable ones too. As of now, the onc doesn't want to change treatments and neither do I, even though I hate the fulvestrant shots. We both want to get as much mileage out of the fulvestrant and Verzenio as possible. So far it's been almost two years. I am definitely interested in hearing how you do with the Orserdu, and I'm so glad that you at least, don't have to get the shots anymore!
Cookie - Thanks, saw the onc yesterday and he did have some positives, like he usually does. Really appreciate the "positive vibes". That's what I like to do for others too.
rlshcaller - Thank you for your nice thoughts. Yes, I can see why you need some scan clarity too. They can be so muddled and vague sometimes. Yes, my onc usually always finds something positive in this stuff and he did this time. He says he doesn't think I need change treatments at this point and that I can definitely go another 3 month scan cycle before we have to consider things again. He would like me to confer with an IR though, just so I can become informed about possible treatment options, and he'd love it if I'd consent to a liver biopsy, but so far I'm holding off, but will probably relent at some point. Good look with your visit on Friday. I hope you get some good news too. Let us know how it goes, and then maybe you and I should celebrate with microwaved egg sandwiches/bagels😉.
Seeq - Thanks for responding in two places. Intolight did also. (It gets confusing sometimes about just what thread would be the better one to post on.) I did get some good info from my onc yesterday for sure.
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@threetree I can see why you love your MO, he seems caring and very reasonable. Agree it can't hurt to consult with IR in case you need them in the future.
Mara I'm so glad you had a nice outing I can hear it in your text and that warms my heart. Well I guess your body needed the extra sleep and that's ok! Agree shop wherever you like, do what works for you.
@rlschaller Hope you sleep well and are refreshed for work tomorrow. Working while on treatment can certainly be challenging. Happy to hear you are able to push through and do what you enjoy.
Mel Hope things are going smoother and the social worker is getting your DD the help she needs. Sending strength and prayers your way.
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Mel, hope you and DD are getting some much needed help from the social worker, I know when I first turned stage 4, mine helped me get the paperwork filled out and mailed to get me on disability and channels for help mentally and physically. In your pockets.
Cookie, the outing on Wednesday was fun, those balls with the leche and caramel were the bomb too, only managed two but wow. Only thing I cannot do is shop at Walmart which is the cheapest grocery store so will save that stuff for delivery.
It is nice out today but will be doing any workout inside as I have chores to do. I also have food to open and some to do in advance. Putting the black and white beans in same container, I really am looking after what I eat more. Still measuring out the sodium and potassium stuff to add to food. 1/8 tsp of potassium makes stuff super salty so most sodium comes from my food vs salt. It is not so bad either. Also going to start moving my body more I thing as well, marching inside if bad weather, outside if decent weather, mall walking as well. Have to get over using the regular bus as well, I can go down the stair without falling. I get free trips on non peak hours which for the daytime would be 9 to 2pm and after 6pm and free all weekend.
Today planning the opening of the beans mentioned earlier, looking to cook up a lot of rice as well to have ready when putting meals together. Still measuring seasoning as well. Also did up a Walmart order, needed more vinegar for my fabric softener, mix mostly vinegar and water 1 to 1 ratio of each and a small amount of the fabric softener, gives a nice smell without leaving a bunch of softener in my cloths and clothes. I am also able to save 30 dollars because the card I use for rent had 30.00 credit on it so that is really good on a 60 dollar order that includes delivery and tip for the driver.
Beans, rice and cheese for the first meal, some sort of salad OR egg sandwich with baby spinach on top and supper will involve more spinach. I did buy more beefless ground and am trying a plant based chicken patty as well.
I do hope the rest of the day goes well for everyone and in pockets for everyone who needs me.
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I got my scan results on Friday- still stable on Lynparza. They have not flowed to the patient portal yet for me to see them, I just got a verbal report from my MO.
I did ask my MO the questions I posted here about "molecular progression". I told him I had watched the LBBC conference, and they mentioned molecular progression testing. I asked if that is something we could check, since the scans are stable. To catch anything before it is large enough to see on scans. He mentioned Signatera. I said I had heard of that but needed to read up on it. He said for me to research it, and if I wanted it next visit to let him know a little in advance, as he needs to get the right tubes to collect the sample. I don't know… would it be a waste of time and money? If my cancer is too small to be seen on the scans, and I have not had a progression, would Signatera really be a good choice right now? It might not give us any good info to use, if I don't have much circulating tumor cells.
I also ask about monitoring the brain, since the body is stable. He said that insurance would balk at ordering a brain MRI with no symptoms. He also said that HR+ cancer is unlikely to go to the brain. I did mention that I am HER2 low at 2+, and he said "oh I need to make a note of that".
I know he has a lot of patients, but sometimes I feel he is letting me be in the driver's seat too much. I appreciate him letting me make my choices, as that is my personality, but is he really on top of things with my cancer? I have not had a progression with him as my MO, we changed from Ibrance to Lynparza with my last MO. Maybe I am just not seeing him "in action" yet.
Anyway, scans again in 4 months.
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Congrats on stable!
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Candy - Congratulations on stable! It always leaves some breathing room if nothing else, and then you can look into the other things like the Signatera test. That's interesting about your onc maybe leaving you in the driver's seat too much. So many seem like they would just as soon not have any major input from the patient; it's almost refreshing to hear of one who encourages you to do your own research. I absolutely know what you mean though - you hardly want to be hanging out there on your own and responsible for so much. My current onc seems pretty good with the balance. He listens to me and entertains my questions and concerns, but is still definitely the one "in charge", so I like that. I'm just so glad he doesn't dismiss my questions and tell me to stay off the internet, etc. like my previous onc did.
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Candy, congrats on being stable! I know insurance wants proof before they will pay to do more tests. It is good that your ONC listens to you.
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Candy, I forgot to add that even though I had a rough time with my biopsy, I would still do it again to gain the good information. It really needed to be done as I have had liver mets my entire nine years since original diagnosis and this is the first biopsy of the liver.
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Candy, so good to hear your stable scan results! I think it's great that your MO will consider doing that blood testing, and I've also wondered about it myself - in the absence of any growth noticeable on scans, would it make sense to change treatments if a mutation is identified? I think I'd be nervous to change treatments too soon, but is there any research to support changing treatments on the evidence of the blood mutation test alone? Perhaps this is being studied and I'm just not aware of it.
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Threetree- It is a balance for sure. My second MO (I have had 4 so far) told me SHE was the doctor, not me, and that I was to do what she told me. I fired her.
I just get the feeling that this MO is sooo busy with all his patients, plus that I am stable for now, that he dismisses things or just lets me make the next step choices. For instance, I would think that he would know that I am HER2 low for possible next lines of treatment. He seemed like this was news to him when I said it. And he didn't seem to have an opinion on the Signatura test. He just told me that it existed.
Yes, I try to keep up on things- watch Webinars, come on sites like this one- but I am not a doctor. I hope he is monitoring me from the background and would speak up if he sees that something needs to be done in my plan of care and not wait for me to bring it up.
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sf-cakes- That is what I don't know. Would/should I change treatments based on the Signatura test results without changes seen in the scans? And my MO did not expound on that either. That is why I don't know about going ahead with the testing. Would it be wasted money?
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Candy, I did say I would get the biopsy, but only because things have changed and we needed the info for my next line of treatment. I don't think I would do it withou need, but that is just me. I tend to hang onto my treatments as long as possible as long as they work.
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Candy, glad to hear you are stable.,
I am having a lazy Saturday thus far, may do some laundry and blankets, thinking the big ones, will eat first and then decide. Playing some games right now with the Pink Panther theme among other songs in the background.
Planning to open white beans and a can of black beans, 1/2 cup of a combo of black and white beans that I put in the same container, chopped the beans with cheese and put in a big bowl, added some garlic spread and a bit of garlic powder, bit of sour cream and onion seasoning and a sprinkle of regular salt, mixed together and used a small amount of ranch dressing. It was filling and really quite good. Forgot to mention, took an english muffin, tore it up and put in the bowl, it was quite good with the beans.
I am not sure what to have later on. I did get chicken burgers, very large that required 22 mins in an actual oven, I had those with a salad yesterday but I also have the beefless ground in the fridge. Will either have another chicken burger or heat up the beefless ground with taco seasoning, little bit of ground beans mixed in or something, not sure yet. I will see.
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Candy - always glad when we get good news here. 🎉🎉🎉 to another stable report.
After several days of 65 and sun, woke up to snow this morning. Better than the severe storms and tornadoes that hit some areas.
Here for pocket duty for those in need. HUGS to all!
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@candy-678 Great news on stable! My MO is very similar to yours she knows , like you I'm a researcher and always have questioned everything. I like that we are able to discuss things and come to a mutual agreement. There have been times at my appointments when she is rereading over my details to remind herself( like Her2 low). I agree I think it's pretty normal as they juggle so many patients. I think to get the best care we can we need to continue to advocate. It's sounds like your MO will be ready to go when it's time. Now you can breathe a little ♥️
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Late to bed so later to rise, woke up a few minutes ago but did sleep well.
Nothing on tap again today, got some wart remover and skin tag remover from Amazon and chocolate as well. I think weather is improving tomorrow, had a lot of rain so will try again tomorrow, take regular bus to the mall either today, or tomorrow while it is free, today will walk on the spot. Tomorrow got this variation on Pringles, a puffed snack with cheese and sour cream flavour, would be fun to sprinkle a couple into a meal, will check nutritional to keep aware of sodium content.
Got some laundry and mop of the floor to do, cat corner to tidy up and lots of boxes to flatten and get ready for recycle on Tuesday night. Monday would really like to take myself on a mall walk, not so much for groceries but just for fun.
I did use beans generously yesterday and will do it again today. Using the english muffin at the bottom of the bowl before microwaving was good too. Today, need to get through some of the greens, developed a new appreciation for ranch salad dressing as well. Not sure what else to have, I purchased these gardein large vegan chicken burgers and I used one as a meal with salad, that may come up again, I will have to see, could also have a meat pie and salad greens. Only consideration for greens is to take one immodium, enough to slow things down and avoid side effects but I love my greens. Still have a ton of meat pies as well but they can stay in the freezer for now.
I do hope everyone has a good rest of the day, in pockets for all who need me as well, in my own pocket to make a dent in all the boxes
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@candy-678 and @sf-cakes my MO at MSK uses the signatera to monitor me for progressions monthly as the scans are every three months. He says he wants to be ahead of the game, as my TNB cancer is aggressive and can grow quickly. I’ve only been with him since November , and so far all has been stable. It does not pick up on the skin Mets, just internal cancer cells. I’m still working, and my employer paid health insurance covers the cost. I don’t know very much more about it, to be honest, just that is is a specific type of liquid biopsy that he uses.
Having a lovely lazy Sunday, reading and relaxing. Saw this, and had to share:
Hope all are well, as best as can be today. ❤️ Rhonda
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rischaller- That is VERY interesting. MSK is a top cancer center and if they do that then it must be a gold standard for monitoring. If your MO does that test every month it must not be too expensive for insurance to approve it. Foundation One that I had done at my diagnosis was very expensive. I am thinking thousands of dollars, but I would have to look up my records. Since yours is TNBC and deemed very aggressive then maybe that is how it is covered. Mine is HR+/HER2- which is more standard MBC.
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Rlshaller, I love the quote and the cat picture. I am exactly the same when doing tasks and doing something I simply enjoy.
I slept a long time again, obviously was needed though did not go to bed so grossly late. I also looked up bills needing payment, paid off a couple that were just sitting around. Feels good wiping stuff out. Must pay more attention to what is purchased. Sticking to most cat food and litter on Amazon and snacks as well. Wasted money on unneeded stuff, want to stop doing that and stop shopping at the grocery store so much, if I just got more pantry stuff, it would last longer.
No laundry done yet but will get there, debating meals. Thinking would make up 1/2 cup black and white beans and 1/4 cup beefless ground with some cheese. Later will do up some rice and eggs, add an english muffin torn up to the bottom with cheese and garlic. Also got some snacks of Amaon called mingles. Puffed pieces, I got cheddar and sour cream, thought those would be an interesting snack to have or to use to chop beans or other stuff. I have to say they are pretty good.
I wound up with 1/2 cup mix of white and black beans, 1\4 cup beefless ground. Chopped cheese up as well and mixed it all, heated 3 mins in the microwave, cheese nice melted. Added small sprinkle of salt, sour cream and onion and taco. Garlic added as well. It was only a sprinkle of each so not too seasoned, binded with sour cream and topped with about 10 of the mingles and it was really good.
Also need to pick a day to start walking on the spot if not outdoors or at the mall. Today is not happening but later on I suppose.
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Threetree, I've been in your situation, liver with numerous lesions that radiologists don’t even bother to count. If your tumors are slow-growing, now is a great time for a biopsy, tissue biopsy will give your MO good information about HER2 status and possible mutations, helping choose the best treatment plan. my advice: if your liver has too many lesions, avoid local therapies like Y90, as untreated lesions will continue to grow. systemic treatment is the best option, I learned this the hard way, after Y90 two 'tiny' lesions grew over 2 cm in just two months.
Candy, I hope scientists gather enough validation for Signatera to gain FDA approval as a routine test, like TMs. there are a few trials evaluating its use in HER2+ mBC, and in mutations. until then, insurance rarely approves frequent testing like this. I liked your comment to your MO about catching anything before it’s large enough to be seen. when scans show stability, it’s tough to convince MOs to order ctDNA, as they often don’t take the time to justify its necessity for insurance (well, it really just takes 5 minutes, doesn't it?)
as for busy MOs, I completely relate. I'm done with mine and gonna explore options, but choices are limited. I don’t want to return to my previous clinic, and in the current one, my forgetful MO is the one with about 12-13 years experience in bc, I doubt the newly graduated oncologist can handle my case, tough situation.
I haven't been stable in about two years. every single scan has shown something, new tumors, slight growth, or "can’t exclude metastasis", progression, thrombosis…. I feel like I’m on a treadmill, running without catching a breath… tired, very tired, and disappointed…
Shana, I hope your neck pain's resolved, thinking of you.
I hope everyone is doing well, looking forward to hearing from you all- big hugs
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Snow-drop - Thanks for your input; it's helpful for sure. Hadn't thought about the "one versus many" stuff much, i.e. like the Y90 taking care of one tumor, while others continue to grow. I just don't really know what they're seeing, and I'm not sure they do either. I'm thinking about a possible biopsy and have told my onc I'd be willing to go to a consultation with an IR, but that's all so far. He says there's nothing urgent going on at this point, but just wants to be prepared if something more happens.
I had no idea that you had not been stable for 2 years now. I'm real sorry to hear that. So much can show up on those scans and it's hard to know what is important and what isn't. Also, they'll sometimes see something on a scan and you can get worried, but then it never shows on any future scan, so was there really something there or not? Those terms like "Can't exclude metastases" are really problematic too. Is it or isn't it, and if it isn't what is it? That's why I'm in this biopsy situation currently. I would think they'd be able to settle your situation a little better than what you've described, and again, I'm sorry you have to go through all of this. Maybe a new onc would be better, if you can get one. Any chance you could have a good talk with your current one, come to an understanding, and get things back on track?
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congrats to all stable. Loving hearing good news. My results also came back stable got them back today. My daughter is struggling with the changes she will soon face physically with the breast surgery. I’m broken hearted. Thank you so much for all the support and kindness .
Goldens 💜🥲 no words honestly All be safe thinking of you all.
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@micmel Mel congrats on some good stable news for you.We are all heart broken with you and are in your pocket always. Hugs❌⭕️
Thinking of @sondraf today hope you're doing ok. We all miss seeing you but understand if you just need a break.
@mara51506 Hey there thinking of you, hope you had a good day today.
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@micmel It is good to hear from you. Congratulations on the stable news. I know you are all struggling with your DD. Know you are in my thoughts and prayers.
@snow-drop I am sorry to read about not being stable for two years. That is a burden above what many of us go through. Your words got me thinking too.
It is snowing here in the Rockies—again. We may get as much as 6 inches tonight. We always lag behind here…
Happy Spring.
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Mel - So glad to hear about your stable scans! A little light in the middle of your darker time. My heart goes out to your daughter and your whole family. I'm really glad you checked in, and I am pulling for you and yours every single day. We are all here for you! Hugs.
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