My Husband, My Life, My Love, My Family, My Cancer
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I usually never look and tell them I don't want to see any needles. The first time I actually saw one of those needles, when the nurse set it down right in front of me after one of the shots and I still had one to go, I just about died. I'd never seen anything like those. Nasty!
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@tanya_djamila and @chicagoan, the pill equivalent is called Orserdu. We have an article where you can read up on it here:
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thank you mods!
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Shanagirl, lovely pictures. I especially like the swan…
Had a couple of crappy days but am doing better today. It comes and goes. Every time I think my family is used to it, something happens and I have to gently say I am not doing well today. I know they are also tired of this after almost eight years. It it why I try so hard to do as much as I can. Someday I will have to say no more and I don't look forward to that day.
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Tanya- Yikes, that visual just reminds me of how tough each and every one of us are! We all have been and go through so much fighting for our lives. People outside of our world have absolutely no idea what it truly means to " keep on fighting". Actually most of the time I just keep going and pushing that I myself forget the war that has been going on with my body and all the surgeries, treatment I have endured .
Just want to tell everyone you are amazing resilient women and I respect all here! I hope that a pill is an option for all going through repeated injections for years. Hugs
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I don’t have issues with needles but that thing ain’t no needle - looks like something out of a horror movie😳.
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I agree with you Goldens. I just don’t look with injections. And they use my port for blood withdrawals. I can’t stand the saline smell that goes into my sinuses when they access it. There are so many little triggers. But apparently this is quite a BIG one. Ouch!
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I never looked at the needles . DH says he never saw so big. Just glad they don't bother me at all. 7 years now.
My MO says most of the chemo meds they are developing are pill form. IV could be a thing of the past.
Stories here remind me we pretty much have an invisible disease. DH never forgets but so far I complain little. Mostly the low energy. Much I want to do, but don't. I thought it was from depression, not faslodex. Antidepressant helped with little interest in doing things but now energy level is worse. It sure helped with anxiety and pain. I had hoped it would help more with sleep. That would be great. But not. It has in the past.
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Shana I hope you have energy to pick up your brushes and do some more beautiful work! I love hummingbirds.
I join the bunch of tired people on Verzenio and Faslodex horse shots. Sitting or lying in bed just makes me feel worse so I try to move around until I can't. People think I'm doing great because I'm doing all this stuff so I let them think so lol. I'm tired of explaining things.
I'm happy the weather cleared so I can putter outside all day.
Tanya I hope you're healing. It hurts for days ugh. I'm finishing a couple weeks of radiation today for the new rib met and then shots day is Monday. The goserelin shot and then the two Faslodex, maybe Xgeva too...
Mara my friend laughed at your joke the ocean waves hehe
Mel pretty shot of the eclipse. A friend said it was cloudy where she was at a zoo but when totality happened it went dark and the animals looked confused. I got to see the total eclipse in 2017, so cool. Just before totality there were shimmering crescents all over everything.
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That’s. Awesome!!!! I have never seen anything like that before. Thank you for sharing. How cool is that?
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tanya, OUCH. I've never looked at the needle size either. I don't look when they do blood draws, either. Once the needle is in I'll look but I don't want to watch the process of it going in.
mk, cool photos!
I got a very personal card from the Trident Society yesterday. Not the normal, generic flyer. It's weird. Do they know something I don't?
Carol
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Mkestrel - The photos are really nice and very interesting. Thanks for posting them.
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That is a very cool picture for sure, I missed the eclipse totally but got to see some really cool pictures and videos.
Went to bed stupid late, my fault, walking and setting up my new laptop took up most of my time. Found it at Costco, another Acer for around 600 before tax. Older brother initially paid for it but paid him through an etransfer before I got home. We had a good dinner at the burger joint which was nice, he paid.I did not buy any food because I do not need any. Got two laptop coolers as those tend to run out, got them from Amazon so they are coming today which is good. Normally I would feel bad about the large purchase but I did have extra money, not charged on credit and felt pretty good about it all. I have an account that I will save up money if clever about budget and when it comes up to 600 put back into my budget. That will take quite a while though, extra frugality with food I like is the key, non processed stuff as well
Waiting for Amazon, going to make beans, chopped up with the croutons and add the beefless ground with cheese. Later, will make 1/4 cup quinoa and top precooked stuff with an egg or two, microwave again, probably use a salad dressing. I did get rid of my large bag of pancake mix and syrup, just got tired of all the sweet stuff and was not interested in the savoury stuff anymore. Also tired of english muffins so did not buy any more. DB and his family will use up the pancake himself, kept the bacon and maple seasoning, nothing wrong with that, also keep cool whip as an easy dessert whilst not to bad in calories if you don't eat the whole things. The walker shortbreads are another thing thing staying as they are just like home made in that that the longer you have them the better they taste. I also saw another thing online, pizza crackers that sound good to me. Will wait until the next shop for that one.
On an interesting note, I am the last OG in the apartment building now. Last person moved out a couple of months ago so more construction happening in the building but not close by, most apartments are completed. I am not too worried, still planning to refuse to move but obviously pay the rent and keep nose clean.
Did most of my PT in bed, you really can get a good bridge pose, did some hip stretches and moving to the side and some ankle work, lifted feet from the toes first, toward head and held a few seconds and then pointed toes down and held a few seconds. If I feel particularly exhausted, will do a paul eugene workout in bed, keep the body moving. Keep legs moving with a march in bed to music. Not sure what else to do.
Mean time, I am in everyone's pocket who needs me and hoping everyone has a good day.
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We're in everyone's pockets, and wishing you all a loving weekend.
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Thank you mods.
Well, got full from breakfast so I decided I can make a bit of fish to go along with it, bake fish in oven and then just bring out this mornings mix with little more mayo and salt. Easy to make. I am still playing with old laptop along with using new one. Trying to run laptop off USB as a live USB, would make it easy to do what I want and should run faster. I just don't like throwing things away, especially technology. Still got an ancient phone that belonged to Mom, just factory reset so her sms to people stayed private and sometimes use it as a radio.
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Hi everyone. In your pockets for all your needs.
Had my worst faslodex shot ever. Nurse rushed it and hit a nerve. Then I had to hurry home to meet palative care nurse for first visit. Then I had to hurry back to hospital for my last radiation treatment out of 10. Now I'm sitting here wondering if I can hang on till Monday to see Gastro NP. Bloody and mucosy minor diarrhea. I just finished Augmentin (a 10 day course) one week ago for diverticulitis. That meant I had to be off Ibrance extra days. I'm wondering if Ibrance is my problem?
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Irish, so very sorry. I think the Augmentin is the likely cause of the diarrhea. Antibiotics are known for causing bloody diarrhea. Feel better soon - what a day for you!
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Hello to all. I "lurk" and read along, but don't post much. Sorry.
I had my scans and MO appointment this week. All still stable on Lynparza (1.5 years on this treatment so far). Thank God! I asked my doctor about "what-if" we stopped the Lynparza (I don't intend to, I just wanted to hear his response). He shook his head and said NO. That the Lynparza is keeping the cancer quiet, and you remove the Lynparza and the cancer would grow. I knew that, just wanted to hear him say it. That I am not "cured" as some of my friends/family think. I wish they could have heard that, but I go to my appointments alone.
I asked him how long someone could be on Lynparza, is there a time limit and then you have to stop it and move to something else. (I was thinking that you stay on the treatment until it doesn't work any longer, but…) He said he doesn't have much experience with the drug. ? ? ! ! He said the oncologists that work with ovarian cancer use it more often than breast cancer docs. So he would have to ask them about any potential time limit.
His nurse is in the background, typing on the computer. When he left the room, and she was finishing up, she said that I should be happy that the cancer is doing good. Again, ? ? ! ! I am grateful.
We are changing my timing of scans from every 3 months to every 4 months. My suggestion. As I suggested that to the doc, the nurse in the background piped up and suggested every 6 months (every other appointment, as I come every 3 months for Lupron and Xgeva). My doc shook his head No as I was saying that moving it to 6 months would make me too nervous. I guess he doesn't want to spread the scans out that far either. I guess.
Anyway, that is my report to you all.
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good to see you Candy! Congrats on stable. I only scan once a year now. Blood work every three months though. I have this new onc. So that. May change. I still don’t know if I’m keeping her. It didn’t go well the first time we met. Good report! Hugs!
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Irish and Mara - I'm hardly an expert, but I think I read more than once, on drug handouts that have come with antibiotics, that loperimide/Imodium should not be taken if diarrhea develops from antibiotics, as it can worsen and prolong the problem. I think I recently read something similar if the cause is a stomach bug. Again, I'd check with a Dr, but my understanding is that if the diarrhea is infectious, loperimide is not the answer.
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candy, I'm glad you got some positive news. Before I progressed, my MO offered to stretch out the scans from three to six months. I told her that the three-month schedule worked best for me, as it kept me from worrying about progression too much. I'm glad you have an MO who seems to listen to you.
I'm back to monthly appointments with her, monthly bloodwork and quarterly scans. Will be off DH's insurance as of May 1. I hope I don't have to jump through too many hoops to get my scans approved.
Love, hugs and pocket duty for all.
Carol
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I got admitted Thursday as inflammation markers were going back up, along with increased temp and heart rate at rest, for IV antibiotics. At least my heart rate is better but I feel absolutely terrible otherwise, like the worst flu ever with the muscle aches. I'm at least in my own room at my home hospital but ita the same deal, just wake up and want to cry all day. No chair or bed setting is really comfortable for long.
First night I had to request pain relief which....didn't go well and no ibuprofen which is just killing me. Pain doctor saw me first thing Friday and upped my background dose which I think has helped (and told them to cut it out with the dosage and timing change they attempted), but my bad leg is still swollen ans sizeable difference to left. All they aredworried about is the redness in my feet which has more or less cleared at this point. But they started with the oldie but goodie drugs and I'm not sure this is working either, though can't tell as crp number hasn't been updated since Thursday night.
Im supposed to go home Monday but ill be surprised if that happens. Also, if they could stop sneaking red lentils into food that would be great.
@illimae thanks for your thoughts, I think even if you are in the dumps its important to talk about that too. I keep hoping for a better day but every day is worse and its frightening and uncomfortable.
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Sondra, this is so concerning. Hope you feel better soon.
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SondraF - I am so sorry to hear you are in the hospital and feeling so miserable. I'm hoping they can get to the root of the problem and you find relief soon. Thinking about you.
Candy678 - congrats on stable!
Hello to everyone in the living room! I saw my MO on Thursday. The plan is to go ahead with the WBR starting this coming Wednesday for 10 sessions. After that I am going to start Capecitabine (Xeloda). Praying that this one will work. I also asked for a biopsy of one of the tumors in my liver since my last one was done in 2019 recently after diagnosis of stage IV. I just want to make sure it hasn't mutated and we have current data on what we are dealing with. I am set to start the Xeloda on May 5th.
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Sondra, I am sorry you are going through all this and definitely is concerning. In your pocket sending healing thoughts and echoing the wishes that they get to the root of the problem.
Candy, happy about the stable for you as well.
Emac, in your pocket for WBR, let me know if you have any questions about that and good to suggest they test for a different marker in the liver.
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sondraf So sorry to hear you feel so crappy and wound up hospitalized. Ramping up prayers for you to recover quickly and feel better!
candy Congrats on stable! Agree I get nervous when we talk about spacing scans further apart.
emac Glad to hear you will move forward with WBR. I hope Xeloda is good to you and knocks things back. I have been on it for almost 2 years and it's been pretty good to me. Of course nothing comes wo SE but are manageable. Agree on the new biopsy, as we all know how things can flip on us. In your pocket for Wednesday.
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Sondra~ sending love your way. Hope you’re ok soon.
Emac~ hope Xeloda is good to you. Some it works exceptionally well for… I hope that you’re one of them.
Hello Mara~waving to you…I received an email from Runor. She sends her thoughts and wants everyone to know hello and hopes we are all well. I answered back that we hoped she was doing good up on the mountain. She’s a sweet woman. I miss her laughter here. She’s an exceptional writer.
have a good Saturday night everyone. It was so windy here. All day. We watched the masters. It was entertaining, DH really enjoys it.2 -
Sondra - Very sorry to hear that you've had to go to the hospital! Be well soon and know that we are all rooting for you!
Candie - There's nothing like stable (except for the "cure", I guess), so congrats!
Emac - Here's to Xeloda being the thing. Good luck wt it!
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Sondra, I’m so sorry you’re going through this!
Mel, thanks for the update on rumor.
I had a strange comment on my FB page. It was from an old college roommate. She said I was strong and healthy. HEALTHY??? Do I even respond or let her know that Stage IV cancer with recent progression is NOT healthy? I don’t know whether to laugh or scream. Some of her posts lately have been strange. I hid her posts for 30 days. It’s just weird.
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@sunshine99 I don't think I'd converse with this lady. If she really cared, she'd study up on Stag 4 b.c. patients. Maybe she's smoking something funny or trying those mushrooms. Geez I hope that progression stops and you get back to being stable.
@threetree Thanks for the information on antibiotics and Imodium. This feels like diverticulosis or colitis, again. The best I can do for now is eat small meals, nothing spicey, no tomato products, mostly potatoes, chicken broth, egg noodles, white rice and sourdough bread. I don't think the augmentin cleared this infection. Gotta get this worked out as I worry about staying on Ibrance. The pain is awful in stomach and bowel to rectum. I know that area must be inflamed, again. Hopefully I can get some answers from gastro n.p. appt. on Monday.
@sondraf Well they need to get your pain under control and get on the ball and fix you. That's terrible to be in that kind of pain, plus the other medical items going on.
Waving hello to all you sweet ladies and gentlemen that may be reading along. Hope you are enjoying stability and the spring weather. Didn't see the eagle yesterday on the way down to hospital for radiation, but did see to black-headed vultures. They were sharing a tall lamp post, waiting for some road kill I guess. lol
Somewhere in my readings on this site, someone posted they have eye mets and was looking for another person with eye mets. I remember susaninsf had been treated for eye mets. I, too, have mets in the orbital wall of the eye. Spoke with RO and he suggested checking in Jacksonville for facility that uses proton radiation. He's of the opinion that systemic treatment should help tremendously and to only embark on radiation if you are in a lot of pain. Too many risks for permanent damage is his concern. Baptist Eye is very renown and I would go for an opinion from them if needed.
Take care and in pockets for scans and all your needs.
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