My Husband, My Life, My Love, My Family, My Cancer
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I have various appointments and since I am at my cancer center several times per month, labs are not a big deal. It’s really just the brain MRI’s and CT’s that make me nervous, luckily my Onc’s give me results quick.
Happy birthday muddling 🎉
Hi all 🙂
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Mae~bloodwork doesn't bother me either it's the rudeness of clueless people that annoys me! But I try to ignore them. Am with you on the scans. I'll be scanning in late May, 4 days after my birthday. It has better Be ok. I don't know what I'll do if it isn't !!! Gn to you!
Runor~ thinking of you ! Hope you're sleeping. I woke up because I knew a name was sticking in my crawl. That name was yours! I'm like an elephant. I don't forget. Much love to all!
Goodnight. It's freaking 118. Yuck!!
Holmes.......hope things are good.....
Hello to JKL and JFL. As well! Our new friend Dorimak as well! 😄😄
Daniel and Leslie??? You ok In there ??
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Marian - I am on halaven chemo for the liver. I did ibrance/letrozole then Xeloda then abraxane and ac chemo. Dumb liver just doesn't seem to want to clear up any! I just would think one chemo has to be my magic bullet?
Muddling- happy belated birthday 🎁 since it is past midnight here in Iowa! Since you want to be greedy and get a few more years, I'm going to be greedy and want the same to be here to wish you a few more!
Parry, you need a break! I hope this trip does you some good! I love the comforter but also i really really Love the basket I see there! I can't imagine taking all those pain killers in a day. Like you would be able to work or drive for that matter taking all that! Make sure to protest the disability. It amazes me when people say such stupid things about cancer.
So at the doctor today- I was sitting in the waiting room by a guy I see there all the time on Tuesday. He normally says hi or a few things. Today he said well cancer has no age limits does it? You don't look very old. I said no, I'm 47, I guess not. On we go talking about the type of cancer I have and what he does. He then tells me his dad is 94 in a home and has four different kinds of cancer. He said he has been dying the past 15 years with cancer. When he goes to see him the dad always says Well I'll prob die soon from cancer. What? How can one person have four cancers and keep living and others one cancer and die within months! Jus to crazy to me.
My hair is growing back decent, it feels so weird! It seems to be very black, I'm used to being a dirty blonde. My eyebrows are coming in as well and lashes were growing in about a month ago. I have a feeling once I get a few rounds of halaven it will go bye bye again! I wore a wig the whole week we were on vacation and didn't care for it! I wanted to scratch my head off!
Love to u all
Sarah
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PerryandI. I am reading back on several of your posts. I love long posts, long stories, etc. When you said sit back, get your coffee and a snack, that's exactly what I was doing. Lol. Keep those long posts coming. I know we don't do comparisons but I am just at the beginning of the trail compared to your ordeal. True I've been doing BC and MBC for 27 years, only the past two years with organ mets. I'm only on my third line of TX. Sometimes I feel like an old pro and sometimes like a newbie. The Redwoods? You get to go see the Redwoods? Or did I misread and it's your sister who is going? I love the giant Redwoods, they are living history to me. Standing next to one brings all things into perspective.
My son said we should pick one of the x-men to describe Xeloda. I've never watched X-men. Have any of you? I do hope X, lady X, Madame X or Mutant with super powers will attack and destroy my liver monsters. He thinks it's funny that I call liver mets livers monsters. That's how I think of them. When I was having my y90 I told the IR I did NOT want to see my liver mets up on this big screen he uses during the procedure. I think he thought that was kind of odd but he covered my face so I couldn't see them. I don't want those mets to have a visual in my brain. One way of taking their power away. So, I call them monsters. I can make them be any shape I want and visualize them being zapped, starved or killed by other means of death. Plus, it kinda gives me a way to laugh at them.
So much for my very active imagination. 💞
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Has anyone heard from Scwilly?
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masons~Good to see you. I have not. I’ve been asking around. Everywhere. No one knows anything. Ive sent endless pms asking. No one has heard anything. It’s really hard to deal with not knowing. I hope you’re well. We’ve missed you.
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Missed you too Micmel but I'm always lurking
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Melissa, I am sorry about your worries. I see how every little pain and aches become source of anxiety for Leslie and her only way of coping with that is getting Gabriel in the room with her.
As for the rest, we finally got brain MRI results back today and she's officially clear of any mets or pathological cerebral lesion so her seizure episode remains unexplained.
Positive thoughts to all of you gals!
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Unfortunately I reported a while back that I received news from Sarah's (scwilly) husband via pm that she had entered hospice and was really weak and incoherent. That was exactly two months ago so I fear she might have passed away
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Thanks for your good birthday wishes everyone. I had a good day. My son called me and we talked a while so that was wonderful. Micmel, we haven't had the birthday dinner yet, we will this weekend. Right now the plan is for DH to go get Mexican food from a really good local restaurant. I could eat that every day!
Parry, I want you to have pain relief!! It hurts me knowing you hurt. I hope you have a good trip and your comforter is lovely.
Daniel, so good to hear Leslie had a good scan. Also, I fear you may be right about Scwilly.
Tanya, glad you got the taxes done. I hope you got some good rest after that.
Everyone, take care! Those on new treatments, or old ones, appointments or time off between them, I hope you have the best possible days.
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Hi All
Good to get updated Parry, think of you often x
Tanya, we went,for,a little trip on the boat, with just a flask of coffee, DH didn't even have a beer, but the wind came up and by the time we came back to the marina there was a lot of splashing, and water coming over the front,of,the boat, but all good fun!
Mae, so far avoiding GOT, as it is only 6 episodes, I may start about week 4 and catch up,for,the big finale!
Happy birthday Muddling!
Love to all, x
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I have been worried about scwilly as well and didn't know her status. I don't pray for her because I think she was against that - strong atheist - but I will send positive, warm thoughts her family's way. I hope she is free of pain and in a better place, whereever that may be.
Well, bad news here. I had a PET and erdafitinib is not working. Liver lesions are more active and have increased in size. And to put the cherry on top, after 4 miraculous years of NEAD in my bones, I have a bone met lighting up. I am leaving my clinical trial and meet with MO to find out what is next tomorrow. Likely Navelbine. Feeling stunned, sobered and freaked out. I have essentially been without an effective treatment for a while now - since November 2018. Spent more time tied up in washout periods than I did on the trial. On top of the two trial washout periods, trial paperwork took months. My MO did give me some Halaven during the months of waiting outside of the washout periods, after I complained enough, but it turns out it was a mini dose and wasn't enough to turn things around.
Does anyone know if Navelbine causes hair loss? I hear the side effects are relatively minimal for a chemo but don't know about the hair question.
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Julie, I am so very sorry about the news. Have you thought about discussing a second go at y90 for your liver?
Sending positive thoughts your way.
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Jfl I don’t know about your navelbine treatment but I hope it’s effective. Sorry about the progression and failed trials. Sending hugs your way.
Muddling enjoy the Mexican food.
Minnie when I was a kid I used to go on the boat with my dad and your water looked choppy. I remember those days lots of spray and one time the boat broke down. I’m glad you got out. Nothing like salty spray and a sea breeze.
Sad news with scwilly-for sure she was a devout atheist. Remembered here for her fighting spirit.
Tanya
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Daniel, yay for not brain mets 😁
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Can I ask how often ladies get scanned? For various reasons I have had three different MOs since I started this journey three years ago. First one did three monthly CT Scans (I ad mets in lymph nodes under sternum and near lung only). Second guy also didd CT scans but more like four months and last time left it for six months (which ended up showing progression). Moved to this one because center has partnership with MD Anderson and it's closer to home. I had a PET in December. It showed progression and a lesion on the brain and further MRI showed five more - all treated with targeted radiation. Anyway she seems to do PET scans almost every two months. I remember the guy saying he didn't like PETs because of the level of radiation vs CTs and I kind of hate them because it's an all morning thing and feels like a bigger deal. So now I'm doing more frequently AND PETs vs CTs. It may be because I"m not stable. Wasn't sure the further on you are if they expect more surprises versus when you're on the first line of treatment.
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skitz~When my hair came in it was wirey and darkish salt and pepper. I honestly looked ten years older or more. My glasses then weren't doing me any favors either. But it took a long time for mine to normalize at all. I used such careful kerotine treatments and enriched it everyway I could. Every damn treatment we may or may not be forced to do just sucks in my book. Ugh it's so maddening. !
Daniel~Glad soooooo glad to hear of Leslie's news that is just fantastic! I have seizures when I take to much medicine without enough base food. It's happened twice. Dehydration is another trigger for me as well with them. Just a thought. To keep in mind. To nail maybe more reasoning as to why they may be happening. Hearing that made my day! However, the scwilly thing has also been weighing on me as well. Thanks for the info you had. At least we know something. Hope Gabriel is doing well!!!!
Tanya~ Hello darling. I agree about her fighting spirit. To me none of the religious stuff matters, friendship and love are what I have to be thankful for. None of us knows anything so I struggle a lot with belief. I may not be an atheist per say, but I have many questions and honestly would hope there would be a higher power to create a lot of the beauty we see every day. It had to come to be somehow. No one will ever know. So I try to be a good person here along the way in life. Struggle as I may with my faith. I do pray.... if that's what it's called. To me maybe it's just wishful thinking but I have to cover my basis. I don't want bad things for my loved ones. I just hope she's not in any pain or suffering. I love everyone equal regardless. I've always felt that way. Scwilly was a special woman. Sweet as can be always. So sad this beast
Masonsma~I am glad to see your name here. Lurking..... I've been hearing that a lot lately. I know sometimes we all need breaks. I am with you all. Dealing with this impending death of my father and what has become a job for me is sucking me dry of what little energy I even have now. Ibrance must be accumulative zombie. That's me! Hugs to you friend. Hope you're feeling good.
Minnie~I would to sit on that boat and look at that magnificent scenery. So envious. You go girl. Gorgeous smile!!
Muddling~ I used to be able to handle Mexican food, not anymore. Everything bothers me. Anything acidic. Took forever for me to be even able to have coffee, the AC chemo did a number on my esophagus tract. So please eat some delicious salsa for me. Pico. Yummy.
Grannax~You started madam X. Wish you the best with it. Many many years many that it will kick some ass !
Hello Mae! Dexter is so good but my heart broke tonight. Didn't see something coming and it sucked!!!! Arggggghh!
JFL~Well not the news anyone ever wants to hear for sure. I just hope that the navelbine works wonders for you. The ablation Or y90 not an option? I had a liver resection for my small live tumor at one point early early on. Fight for what you want. I have heard that some have thinning and some have hair loss. There is no rhyme or reason. I believe every treatment will place that warning on their chemo, because it's intention is to stop cell division and that includes healthy cells which also die. Thinning would be the first thing listed loss is also mentioned. I hope you don't have that happen. Like I am always saying and feeling. Enough is enough.
We all fight so hard. For what. ? To hop from treatment to treatment each time not knowing. It's a crap shoot and we are the crap. 🖕cancer
I have my day to ta care of my Dad tomorrow, I had two days off and I slept the entire time almost. I hope I can find the energy I need to do it. It's really become a full time thing. I need batteries. Gasp help!
Hugs to all ! Okay Runor. Out of the shadows. 😜😜
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Dorimak~For me it’s been every six months. With blood work every three and XGeva shots. I’m facing scan end of May. First time I’m really dreading progression myself and I am in my first line of treatment. #30 month of ibrance and I’d like to have 30 more!!!!! So frustrating! Not knowing what will work and what won’t.
As our Parry says we are team FU cancer !!!!
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Gosh Micmel six months is kinda nice. I wonder if it's because you have bone mets where as I have that lung area (and recently dx with brain mets). I wish you 30 more months too with IBRANCE!! Were you able to stay on the 125 MG? I struggled with white counts and was on the lowest 75mg dose.
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dorimak- I kind of think scans are dependent on the type of chemo you are on. Sometimes i get scan around three to four months of starting a new chemo and then it kind of depends. I’ve always had ct scans only. I was scanned more with ac chemo and I think bc it’s so harsh they didn’t want me on it if it wasn’t working. My tumor markers are pretty reliable for me. If they go up, scan time right away. I do know my doctor tries to save me from the radiation from them as well.
Jfl- I’m so mad and sad the trial didn’t work. I know where you are coming from and I’m sure we all do. The disappointment of a treatment not working makes me sick to my stomach. I know I’m about out of options for chemo and nothing has helped this stupid liver of mine. For ac to not have done much for me took the wind out of my sails. Then new treatment brings hope and I say ok this one is it, I’m still waiting for one to be it, the one to work. Can’t you go Back to halaven? I know i read not that long ago bestbird told someone kisqali worked good for liver mets.
I saw yoga for cancer patients sheets at my doctor office this week. I forgot to grab one but I feel I need this. I need some me time, relax time, relieve some stress time.
I hate that cancer makes me feel I should never plan anything. There is a bus trip for a cubs brewers game near end of July. I hate to sign up and pay for it bc how will I be by then? What treatment will I be on? How will I feel? Will I even be alive then? Well I bought them and figured I could always sell them if I had to. It int just the cubs game though. I do that with every event in my stinking life now. Plans for August with bf family. I can’t commit bc I have no clue what August will bring.
Dumb stupid stupid bad no good crappy I hate you cancer! You wrecked my life. You don’t leave me head and you control my life.
I think I should go find that fire post huh? I have a lot I could throw in the fire!
😤
Sarah
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Sarah, thanks for the feedback on the scans. I would really like to get back at least to CT scans. They're in and out and expose me to way less radiation.
I too hate that it's getting harder to plan. Up to November I was kind of on a roll with three months and then it all fell apart and I feel like I can hardly commit to anything. Ultimately I think we should probably should just make the plans, but when there's expense involved it gets more complicated. I feel in the last six months that it's slowly chipping more away from m y life and I hate that. I'm so consumed worrying about hand foot syndrome from Xeloda that I haven't even allowed myself to consider that it may not even work. While I do appreciate the support from these boards, it's very depressing to read that treatments don't work for some..... period! Like at least if we knew okay we'll get months to a year or two or more it would be easier to deal with but I'm on my third treatment since December. I do HATE it.
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dorimack, I have a CT body about every 3 months (give or take a week or two due to holidays), a NM bone scan annually and brain MRI’s every 2-3 months. Never had a PET, no body organs involved so far. There was talk of moving to a 6 month CT but it continues to be scheduled every 3, I don’t mind so much.
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dorimack I have CT with contrast every 3 months. A bit overdue at the moment because of my holiday, and then Easter here. Chemo next Monday followed I am sure by scan within 3 weeks. I think it's reassuring every 3 months (with the right result, fingers crossed)
Daniel, good to hear about Lesley.
Tanya, we sued to sail but then when I got ill, I couldn't run round the boat anymore. Now it's just a little boat, but in summer when it's 35C every day it's a godsend
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Micmel, When I hear about your history with mbc, it always strikes me that your medical team treated you aggressively as a patient with oligometastatic disease. You had only two areas of metastasis, and both areas were treated aggressively. I don't know if you saw it, but Bestbird recently posted that the median survival for someone who is treated aggressively for oligometastaic mbc is 185 months. That's more than 15 years, and half the people survived longer than that. That sounds pretty darn good to me, and when you consider the fact that those stats are already outdated since treatments have improved over the past 15 years, those numbers will undoubtedget even better! I know it's not easy to look on the bright side, but try to keep that information in your mind when you start to feel down. You recently posted "We all fight so hard. For what. ? To hop from treatment to treatment each time not knowing. It's a crap shoot and we are the crap. 🖕cancer" I can only answer this question for myself. For others, there might not be any answer, just more questions. I don't know that "fight" is the word that applies to me. I adjust. I go on. I hope for the best. I look forward. Why? Because I have so much to live for. I am someone who truly enjoys life and being alive. It has been almost four years since I was diagnosed with mbc. During that time I have lived through some sad and scary times, but I have made it through them. I have also had some wonderful, happy times. I have met some special people, seen beautiful sights, felt love and joy. I have seen my children and grandchildren grow into caring, thoughtful people. I have had good scans and bad. The bad news is always difficult to hear, but that's when I have to adjust. I am lucky enough to have a good support system to help me through those times. I choose to look forward with hope. Like everyone else, there are times when I get angry and discouraged, but I do not want cancer to define me. I am so much more than that disease. I cannot afford to spend my time worrying because then I will miss out on all the good things that are yet to come. I am not saying this very well, sorry. As I said, I can only answer your question from my perspective. Everyone is different, and I realize that what works for me does not work for all.
Hugs and prayers from,Lynne
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what is oligometastasis? I’m keep reading this terminology but don’t understand it. Thanks
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oligometastasis is metastatic disease that is limited to only one or two Mets in only one or two places in the body. Some doctors will treat it aggressively with a curative intent.
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thank you 50sgirl. So could it also be one spot in the liver and one spot on a bone? Or do the two spots have to be in the same place/organ network?
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The spots can be in more than one organ such as bone and liver.
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thank you!
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50's girl, I am moved by your Grace. Grace, capital G.
Hugs to all who are having a hard time dealing with such daunting health issues. This is the thread I drop in on pretty much daily. I am sad for all the trouble I read. I shake my head at how anyone manages to carry on. I am in awe that so many of you do. It's by Grace. Capital G Grace.
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