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Re: My Husband, My Life, My Love, My Family, My Cancer
Shanagirl, I am always exhausted, I have also called in for appointments due to exhaustion. I am adding a marching exercise to Leslie Sansone, will use two canes for balance, the pace will work me out quite a bit. Sometimes it brings up the energy. If I am super tired and want to move, do my exercise in bed both for balance and movement. I nap as needed as well. I think that is why I try to do different food or housework things. Keep my mind occupied.
Getting a silly purchase but I do not care, was 60 bucks and did not buy groceries the past couple weeks. I bought a really small portable washer, saves my hands from handwashing, the detergent bothers my skin but I figure it is good to have if everyhing is busy on blanket day to get that done. I also received another throw blanket which is nice, easy to keep warm, even made the bed. Debating giving the blue large fleece blanket a try the new way I do blankets on Sat or Sun, those are the bedding wash days.
Not sure about food today, I loved the cheese sauce made with the KD and taco seasoning so that will happen again soon, keep the KD noodles for other meals. Have to open up some beans. I was also watching you tube and though I am not keto, I saw a number of interesting bread ideas, even a cottage cheese bread that I will be checking out. Today will be simple, planning meat pies, need to open more beans and having eggs later, may make a fried rice with cheese shreds, beans and garlic heated in the frypan. I'll see what my stomach wants.
I am hoping everyone has a good day, in pockets for everyone including myself, getting boxes from amazon broken down, when I do not order off Walmart, I do some pantry orders off Amazon and those usually arrive in a lot of boxes. Also need to get to shredding some documents as well.
Re: My Husband, My Life, My Love, My Family, My Cancer
Got my 60.00 portable washer, spins OK, cannot overload. It is a bit wobbly so put a yoga mat piece I cut to steady it a bit, draining in the bathroom sink. I will see just how often that is used, mostly on blanket or clothing wash day but will not complain about it. It was cheap and works as I want it to. So far I give it 7.5 out of 10. It did come with a spinner that goes inside but I will just wring it out and spin in the bigger spinner. Did I need this no but I did want it. Will fold down so I can store in the linen closet.
Re: Are you currently (or have you been) in a Clinical Trial?
Saulius, There are not any trials of Celebrex or related drugs that I know about specifically for MBC cancers with PI3KCA mutations, which I find very discouraging given that the link with PI3KCA was reported in NEJM long ago ( 2011), and has been borne out in papers looking at different cancers since then. So many women could have potentially benefited in the meantime! However, I did see where it was included a clinical trial for colon cancers with PI3KCA mutations (testing in combination with another trial drug for PI3KCA) that I think started this spring. If I can find the trial, I will come back with the link.
For me, when I had some starting progression in a couple of scans and couldn't find a trial to take, I added one Celebrex at night (standard 200 mg dose) and my TMs dropped, so the standard dose was sufficient. I was still on Verzenio at that point and didn't want to add a second dose (regimen is supposed to be 2x/day) but then later on I dropped V and added the second Celebrex and my TMs dropped even more significantly (probably the V had stopped working), and it has been stable since so far. So all I did was add one pill, test TMs a month later, add the second pill, see if it helps…
Re: My Husband, My Life, My Love, My Family, My Cancer
So many have husbands/others to help- Shanagirl, Mel, Intolight. I live alone, as does Mara. I pace myself, but it all falls on me- meal prep, laundry, housework, all of it. I cannot afford a maid or someone to come in and do things. So I just do on my own. What choice do I have.
Intolight- When the nurse asks me if I am depressed, I say OF COURSE. But I follow up with No I am not suicidal. Good grief, we have MBC, who wouldn't be depressed.
Re: My Husband, My Life, My Love, My Family, My Cancer
Shanagirl- Oh my gosh YES!!!! The fatigue is my worst side effect, that and the on and off nausea, but the fatigue is the worst. I am a morning person, always have been, so I get up early and feel like I am on a time limit of what I want to get done around the house. I know that once the fatigue hits, I am worthless. And that is usually around 1-1:30pm. I HAVE to nap almost every day- even for a "cat" nap of 30-45minutes. Just to recharge the batteries. Sometimes I have trouble thinking, like a fog is descending over my brain. Trouble concentrating or coming up with words.
Edited to say- Mae was posting the same time as me. She mentioned having more fatigue until they lowered her dose of chemo. I have been on Lynparza for almost 3 years, with a dose reduction after the first 3 months, so I have been on the same dose for 2 1/2 years. The fatigue has been constant those 2 1/2 years. I have found that some days are less fatigued, and others more fatigued, with no rhyme or reason. Totally unpredictable when will be a "good" day and when will be a bad one. But I nap almost every day.
Re: thread for middle age to older Christian women.
Teka, that deer looks like it would love to have a free buffet of your yard. I can see why you have protection around your raised beds. I bet you will get that pic of a doe and fawn soon. My neighbors have complained that the hawk moth as they called it was trying to destroy their tomatoes. I am going to share a couple of pics of a hummingbird clear wing moth I took quite a few years ago. They are very hard to get a good pic as they are so fast. They need a very fast shutter speed if you are using a regular camera. When I took these I was pretty new to photography and really didn't know much at that time. Mostly luck when photographing these pics.
My bite is no better so I started the antibiotic and prednisone today. The PA I saw mentioned making an apt for me on Friday. I didn't do that but I am wondering now why she mentioned it. The redness is more and still itching. I have had a lot of unexplained arm pain lately and I hope it is totally unrelated to this bite. I did not mention that to her as I didn't think it was related.
Enjoy your potato salad and hot dogs. Sounds like a perfect meal for July 4th.
My bucket list is getting a pic of an owl in the wild. Maybe we will both get our wish list of pics in the future.
Happy 4th.
Love,
Nancy
Re: thread for middle age to older Christian women.
I visited the Butterfly House a few days ago. I thought I got some good pics but after having my camera to the camera store to update the firmware something went haywire. One of the main settings that regulates the amount of light in (aperture) was set when I got there and I didn't realize most of my time there the aperture was automatically changing to these crazy numbers I would never use for this type of photography and hence many of my pics were out of focus which I couldn't see on my camera at the time even though I did check my settings after things got a bit goofy. I haven't checked my camera to fix whatever may have happened. With that said I have just a few shots and only one of them I was happy with but I did pick butterflies I haven't posted this year. So here goes.
This first pic is the butterfly version of the water cooler. However their water has fruit and sugar in theirs.
This second pic is an Eggfly. I am not sure who comes up with these names.
This last one is a Citrus Swallowail
Have a good evening dear sisters.
Love,
Nancy
Re: After first shot of Lupron
Day 5 (yesterday) period has left me. So that was normal in a way. Physical items like hot flashes/headache are almost gone. Sleep has been better, no more waking up every 3 hours or so or few times throughout the night. Mood still has anxiety (less) but now I am in grief and gloom. Think these were always in me, but other mood took precedence or it was suppressed really good (which I am good at). Now they are all on the surface and I am facing them now, whereas I most likely would have faced them at the beginning of all this. I am waiting on my next meet with my therapist and social worker to work thru this. I think once I get more menstruating cycles in and therapy, these could also subside.
I consider these as my side effects from this 3.75 mg 3 month slow release lupron shoot. Many other boards say that it could be months or years for them to work itself out. But this 6.5 months have been a roller coaster of a ride. I dont consider this as the end of this journey until I am back to 95% of the old me. Right now, I think I am at 73%, still got some ways to go.
zen1028
Re: After first shot of Lupron
I am 47 and not too sure if I was in perimenopause when I was diagnosed. But this is something I will need to discuss with my new oncologist when I see her in September. However, the few times that I did take tamoxifen while on lupron, was BAD. It is hard to describe but anxiety 1000 fold, panicky feelings, just bad. The oncologist I had just wanted me to take anxiety pills and then when depression set in back in March, he just wanted me to take on depression pills. I just dont like this pill on top of pill on top of pill to mask one issue on top of another. I want to LIVE but I also want a good quality of life where my mind is at least as normal as it ever was.
Lupron was not giving me that and still am not even with this period. My body right now is almost reacting like post trauma type of feel. Not sure how long that would go away, maybe after a few more menstruating cycles?
I am not against nor am I saying absolute NO to tamoxifen. But I am just not ready to take it on now with my body in the state it is in. My body right now has estrogen and it is like a "shock" to it after these 6.5 months on lupron.
zen1028