My Husband, My Life, My Love, My Family, My Cancer
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Hi and good morning. Girls. Looks like coffee time in the living room. @intolight i’m glad you and DH are enjoying your new deck with that delicious breakfast. Nothing like good ol American breakfast bacon 🥓 n ‘ eggs.🍳
@mkestrel thank you girl. I hope you feel better too. Rads make you feel very tired. try and take a relaxing bath with epsom salts to draw out the radiation before you go to bed.. this way is doesn’t linger in your body after being zapped.
@threetree yes that. Fasoldex is a beaut. When I get the swelled lump, it not only hurts but is so itchy. I spray Bactine on it and works lik a charm. Also I. Went out and bought a soft leather One Minute Daily Devotional book. I’ve been reading it each day and it really helps keep my mood up and push through any side effects… very upbuilding thoughts to dwell on🥰
OOOOh @micmel I love to shop for myself😊
@illimae Hey there girl. Glad to see you. I also go thru periods of not checking in. Sometimes we need to isolate or take a break.🩵you’re here now🩵
@sondraf I have thought briefly about Pallative care but I’m afraid all I will be offered are things I can’t take anyway….opiods make me sick and headachy and. Itchy….radiation…nope, don’t feel like dealing with more waiting. For appt for another procedure. I can’t take anymore. NSAIDS…….or more meds…Tomorrow I go for my monthly Fasoldex and Xgeva injections and follow-up with Onc. So I’ll mention the bone pain an aske questions.
So I’m very tired of typing right now… Saying hi to everyone else……love you all
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Well, heading out for my scans here in about 3 hours. Want to thank all of you who offered good wishes and pocket duty again. I will sure be thinking about all of you and your support while I'm freaking out there in the radiology/nuclear medicine department. ( I actually had nightmares last night.) I'll try to check back in later today/this evening. You are all just the best, and I really appreciate the support. Enjoy your day, everyone!
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MyDaily one minute devotional with the pretty little Rose Quartz crystal book mark…..my personal pallative care to push through SE’s
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thank you so very much.
Have a blast Mae!! Be safe!!!
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I have read over the posts but missed too many to comment on each one, rethought the food thing as well since others have enjoyed it but might condense it down some to be easier to read should people want to,
Today is mostly housework and paying bills, laundry is finally looking to be finished today. Doing some budget boosting TV ads and mobile games. Got almost half a Walmart grocery paid for. Will play the mobile game for 10.00 to get free cat food. My vileda spray mop is not longer spraying so I will just spray the floor ahead of it run the mop over and use foot mops in behind, they work well, just have to insert a broom or or mop between stuff.
Food is half cup beans, 1/4 cup beefless grounds, couple slices of the cheese and croutons, make some sort of a hamburger vibe on the plate by topping with mayo and ketchup. Should be nutritious and filling. Am also looking up a flatbread thing made from canned chicken, parm cheese and couple of eggs seasoned and flattened on baking pan, can add whatever you want. Some sort of keto dish though it sounds good to me.
In pockets as needed and love to you all, I will continue my work around the house as well.
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Mae Safe travels and have a great time!
Shanagirl Happy to hear you are finding peace with the daily devotional. We all need an outlet to rest our busy minds. I never realized that Faslodex could be so tough until I heard all of you ladies suffering through it. I hate to hear this and I pray it keeps all of you stable for many years to come.
Mel you deserved to be spoiled and I'm glad your family made it extra special for you.
Mara Awesome with all the savings on the Walmart order! Gotta love a good deal.
intolight Wow what a beautiful view from your deck, enjoy!
Hope you all have a restful night.
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Hello ladies. Going to try to fall asleep before 1:00 am tonight. I’m hoping anyway. Today was warm. But. Not terribly hot. I do not want it to be hot yet, we can have a springlike summer as far as I am concerned that heat does me in. And quick. Just like the cold too. I guess I can’t win really. Its usually one or the other. That’s why I am so thankful for this beautiful weather. No jacket needed. Can wear pants. Not humid. I can’t breathe too good since I only breathe on one lung. In the heat , It is difficult! Thinking of all test takers today and hope we hear good news ! Love to all. Goodnight.
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I got the results of my MRI today (within four hours.) …there are numerous lesions on both lobes of my liver. Everything else is clear. My oncologist hasn't discussed this with me yet but it usually means a change of treatment. I have been here before but I didn't expect it since my CT scan was clear everywhere else. I appreciate your prayers.
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@intolight Oh I am so darn sorry that your scan results weren't the best. I guess I don't understand how the systemic treatment works so well in one are, or many areas and not a certain area. May the very near future crush those buggers in your liver and we will really celebrate. Saying prayers and sending hugs and love.
Waving hello all. It's 3 a.m. and I really need to sleep. In pockets for scans, loved the gobbler pictures and truly do enjoy short devotionals. Although I love Chicken Soup for the Soul books.
Have a blast @illimae! Mel, sounds like you really did have a grand birthday. She will always be with you. I'll need to catch up a bit later. Can't keep my eyes open, finally. Night sweet friends……….
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Intolight~I am thinking of you. Good that there isn’t anything else anywhere. I had a tumor on my liver and they took it out surgically. Maybe they could use ablation and blast them out of there. I know you’re in shock. But I’m choosing to look on the bright side. That it’s isolated to one place. There are many treatments. So I’ve been told. You’re in my thoughts and prayers.
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intolight Sorry to hear the results aren’t what we all hoped for.I too am going to remain optimistic that the next treatment will squash the liver mets. Wrapping you in a big hug and continued prays for strength and healing ❌⭕️
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Intolight- I hate to hear of your progression. I looked at your profile, and the profiles can sometimes be confusing. Where was your mets? Did you have ANY in the liver, and now they are worse, or is the liver new for you? When do you see your MO to discuss the next plan? Maybe they can do a liver biopsy to see if there are changes in the ER/PR/HER2. Keep us posted.
I am doing ok, I guess. I don't scan until Aug 2, so I am just continuing the same treatment. As I posted recently, I worry if the next scan will be the one with changes. I have been VERY blessed to have been stable for so long— on the current treatment for almost 3 years.
I am mainly struggling with the mental aspects- - losses of career/ health/ finances and seeking acceptance and contentment with what my life looks like now. And I struggle with the arthritis that affects several areas of my body now.
My thoughts are with you all and I read your posts daily.
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Intolight - so sorry your MRI was not what you had hoped it to be. I pray that your new treatment will take care of those spots🙏🏻🙏🏻. We’re all here for you……HUGS.
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Dear intolight, wrapping you in hugs, I'm so sorry to hear about your MRI results. I hope you can talk with your MO soon (today, maybe?) and discuss all your tx options.
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@candy-678 Thanks for asking thoughtful questions. No, liver mets are not new for me. I had several with my first denovo diagnosis, but they have been "quiet" for many years with only a minor speck here and there over my past eight years of treatment. I had numerous bone lesions originally too. What is a shock for me is that the rest of my body is NEAD so right now I have liver only mets. Yes, I will ask my onc about possible changes in estrogen status and whether a biopsy is warranted. I have never had my liver biopsied as the lesions were always too small before. The tech said I have "at least ten" lesions now spread all over the liver including both lobes. The picture that I can see shows spots everywhere. My tumor markers have never been reliable for me and they still register very low—like 8 and 10. I have an onc appt scheduled in two weeks but I know my onc will call me soon and either move it up or start the change discussion now. She is good about that.
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@intolight You have prevailed before and you have my greatest wish that you will prevail again.
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@intolight I am sorry as well to hear about the progression, in your pocket always, hoping that the next stage will involve getting rid of the liver mets surgically or with ablation if possible so it can grow back clean or drugs that will destroy those nasty cancer cells.
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Intolight - Very sorry to hear about your apparent/possible liver progression, especially with everything else so stable for so long! I think there are a lot of treatment options out there and am wishing you all the best with whatever you do. I'm sure your oncologist will have meaningful things to say about all of this, as I know you haven't had a conversation with her yet. Know that I am thinking of you and have my fingers crossed for a very good outcome. Hug.
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This must be the week for liver lesions. I got my bone scan results back yesterday evening and all is stable there. Still waiting for the chest CT results. However, yesterday afternoon, I got the abdomen and pelvis CT results back that said, "Slight increase in size of multiple liver metastases." Needless to say, I was stunned and still am. They have considered me "bone only" with some "uncharacterized" liver lesions ever since I became stage 4. Prior to that they had seen what they said was a cyst on my liver, and then also a couple of small lesions that they said were too small to characterize. More recently, they have noted the cyst, claimed that one of the other lesions looked to be a hemangioma, and that the other one or two were "neither here nor there" according to what one ER dr told me. The onc agreed. No radiologist to date had ever seen anything that would have definitively called cancer or metastases. That were all as of about 3 months ago. Yesterday was the first time anyone said that any of those lesions was "metastases", much less all of them! I see my onc on Thursday and will see what he has to say. I don't know if he will get in touch any sooner.
I looked this radiologist up, as I sometimes do, when I get weird results, because sometimes they turn out to be a resident or something. Well, not in this case. This guy is in his late 50's and liver imaging seems to be his thing. Not sure just why he was the one who read the scan, but I think it's actually random. His "home base" here is at the "Liver Tumor Clinic" at the medical facility I go to. Usually it's just a random scan reading radiologist who reads and writes the report. I figure this guy either really knows what he's talking about, because it's his area of expertise, or he just sees liver tumor everywhere, due to his routine job (this is probably wishful thinking on my part). This report also seemed to have been written more bluntly and hurriedly than ones in the past. It came through fairly quickly to MyChart, so I wonder about that too. There's just something that seems odd about all this, unless it's just me not wanting to accept what could be reality. I got a bad/erroneous scan report last winter, so I'm now on the lookout for what could be possible errors in these things. I guess I'll just have to wait until Thursday when I see the oncologist. He usually has something positive and not as "awful" to say about what gets reported compared to what the radiologists usually write. There may also be other indicators (blood work, etc.) that I wouldn't know about, that might suggest this isn't as bad as it looks right now? Trying to hold onto some hope here …
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@threetree yes, sometimes the reports can be confusing. I have had varied liver reports before over the past eight years. I am just hoping I don't have to go on IV chemo. I have been on five different oral treatments and have about exhausted most oral options. I also have never had radiation either but it looks like my lesions are spread all over both lobes so I don't think that is an option.
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Intolight - I completely understand not wanting to go on IV chemo. My previous oncologist was ready to do that after Id been on Faslodex and Verzenio for barely 3 mos., as that scan showed a very small bone progression. I pleaded for more time and she reluctantly agreed to a month, then she went on maternity leave. The onc who covered for her had a different take and said I was fine to continue with the same drugs. He's now my regular onc, thank goodness. Sure enough, the small progression spot went away, and I've been fine with the same drugs for about a year now, until this liver possibility popped up. I dread the idea of a med change and especially one to IV chemo. Maybe you should not only get your onc's take on your MRI, but maybe look for some second any/or third opinions. Making a med switch is a big deal, and maybe the report has some anomalies also.
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@threetree and @intolight, I am thinking of you both and sorry about the liver issues. I hope your oncs have a tx plan that is gentle on you and rough on the cancer. In your pockets with support from koala country.
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My oncologist just called. She conferred with other radiologists and they all think it is just a finer resolution of what has been there before. Different types of scans show things clearer and in different types of tissues, etc. It fits with our discussion of CT, vs, Pet, vs MRI vs bone scan. So she wants me to keep on with my current treatment and she will rescan in three months. I am good with this. I have had liver metastasis since my first scan eight years ago so I think this may be right. My cancer also seems to grow slowly and my markers are unchanged with no new symptoms. Different scans have showed different things in my liver in the past. Thank you for your prayers and letting me take you with me on this wild journey.
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Hey Malleemiss251 - Thank you so much for the Koala good thoughts and supports. They are much appreciated. Holding out for a possible mistake or misreading on my part or something, until the onc at least, weighs in. I do not want to go off the drug regimen I'm on now. Fingers crossed.
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@threetree Maybe your liver met reading is similar in that they are not new or pronounced enough to warrant a change. I will pray you can stay on the same regimen.
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Oh Intolight - Thank you so much. I'm hoping there's something "off" about your MRI report as much as I am my scan. Re my own situation my latest is noting that the radiologist is a non-native English speaker, and wondering if in what seemed like a rush, he inadvertently used the word "metastases" synonymously with something like "lesion" or "neoplasm". One of my spots has been unquestionably thought of as a cyst for a good 5 years or more, and he just called every spot on my liver a "metastases". That just seems off to me. (Here I go, continuing to reach for straws or whatever. Well, maybe I'll be able to grab a straw or two for both of us - smile.)
Editing to add that I was encouraged by what you said about your onc thinking that your results might have been due to better imaging and not progression per se, and that staying on the same meds for the next 3 months was OK.
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Just want to weigh in with my own experience regarding a couple of scan results:
Had a previous bone scan report state "increased uptake, suspicious for metastases", which turned out to be a fracture, not a tumor. CT scan revealed the fracture clearly.
More recently, an xray of my thoracic spine (where I had rods and screws placed) noted "laminectomies present". I did not have laminectomies during spinal surgery. Emailed my surgeon to confirm the report was wrong, and he said "yes, it's incorrect, that's why I review them myself."
It's so emotionally difficult getting these scans, and then adding in potential error when the scans are read...ugh.
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Hmm, we've certainly heard this not infrequently in the Zoom meet-ups as well, which made me curious to look up the error rate in radiology reports. This article seems to be interesting on the topic—more interesting than just the statistics I was looking up. It provides a more nuanced take on it, though I think with the example @sf-cakes shared, that's clearly an error. Thought you all might be interested in taking a look at the article, @sf-cakes, @threetree, @intolight and anyone else curious.
"Error and discrepancy in radiology: inevitable or avoidable?" (2017): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5265198/
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Sfcakes - Very interesting and helpful to read about your experiences with these scans. I completely agree that having to get the scans is anxiety inducing enough, and then even worse when there are errors or possible errors to worry about. I'm hoping that as happened with both you and Intolight, my oncologist will be able to offer some sort of mitigating commentary when I see him on Thursday. He seems to be real good at that. That's one of the great things about the doctors. They can know enough additional information to make a positive difference, but when I, as a layperson read the scan reports, I only have what the report says there at hand, with no other meaningful facts at my disposal.
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I am thinking of you ladies. I’m trying to settle in Theo at my feet. He’s one year old now. May 26. The day after my birthday! Meant to be mine. I am in everyone’s pocket for support and love. I hope everyone has a pain free nights sleep. I got myself a cuddle puddle unhide blanket. This thing is a monster. So soft I feel like I’m sleeping under the most magical feeling. While not cheap, will last. Forever. I love it. So cozy. Winter is no match for this. I have two now. On top of each other. I’m a blanket sleeper. Love lots of pillows and blankets on my bed. The colors are mauve and charcoal colors. I also have the matching pillow set. It’s just dreamy!!!!! One good thing about having to be in bed, I love my bed! Goodnight!!!!!
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