My Husband, My Life, My Love, My Family, My Cancer
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Hi Rosie my friend. I agree. It's just plain tough. I just am going to try to push further to do more. I don't want to spend it all in bed. My DH is going to rent an RV and we are going to take a test drive trip to the beach. I just want to sit and listen to the ocean 🌊 and see the depth of the water as far as the eye can see. I've always found that interesting and fascinating. It just never seems to stop ! Today was so special, my step mother is going tomorrow but I have his laundry so I'll go over for a short visit. I have some groceries to get. Yuck! Nice to see you 🌹 hope alll is well in your world!
Waving to Cureious and santabarbarian! Pics of the mission!!? Are you even allowed? Hmmmm jen has some awesome shots. It makes me hope someone could possibly be listening. I read the israelis have found a cure to cancer and it will be available within a year. All we can do is hope. All we can do is fight. That would be something! Put a good word in with the saint. That this time it's the real deal!
Minnie ~ perfect of papa with the kindergartener! Wow what a moment.
Welcome back to to you!
Mae~Get any sleep ?
Donna~I honestly would love a break. That's why we are going to test the RV out, that way. I can ride when I want to ride and lay down when I feel like I need to. I am really excited to try. I miss traveling with him. Sometimes i also wonder if it's the partly the ibrance fatigue. It’s just some days I don’t have any desire to move. I wish I had more of Maes answers Minnie’s energetic ways.
Haven’t seen MJH!? Hope you’re ok darling Parry you ok ?
Anyone hear anything about scwilly?? 😞
Goodnight and much love
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Jen, thanks for posting the picture from the Mission and sharing your experience. I have not been there but would like to go. My parents visited a shrine of Saint Peregrine in Portland, OR recently - they were there to see something else and stumbled upon it. Not only is Saint Peregrine the Patron Saint of Cancer but Saint Agatha is the Patron Saint of Breast Cancer.
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Oh my lord — you are blessed to be so in love with your husband! I know that was not the point of your post...and with love comes heartache, as you are expressing here. I’m so so sorry this disease has come into your love story. It’s aweful. I have no encouragement for that right now—I just know you are so blessed to be so madly in love with your husband.
That’s all I wanted to comment on for now. ❤️
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micmel, a beach trip sounds like a great start!
I slept great by the way, I usually do but the first night back in my own bed after vacation is always a treat and it’s a temperpedic, so it’s super comfy.
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Hello JFL~Always nice to see you. I hope everyone and everything in your world. Is doing good. My world is somehow again shown that you have no freaking idea what's coming down the pike. This thing with my father has my head spinning. To go from 0-100 in a matter of months. I know he loves me coming and being with him. It shows. Life is so crazy sometimes how the circle comes around again. To force things to be right. Big hugs for you !
Tracy~Hello there.... I get VERY upset, angry, distraught. He is my best friend. My person....my everything. Some days I honestly think I have a lot of time. But then the little inner voice freaks me out saying. “Bitch get a clue". Either way. I'll love till my last breath. My children are my other loves. My bf... my other close friend who is a nurse... the kids closest friends. It all just breaks my heart. I Iove my life, I would never need anything else. Except something I cannot control. Something...,none of us can help. A failing body. It figures. Welcome to my second home. We are a family here. 💐🌹......
Mae~I agree nothing like your own bed. I hope you slept like and angel. (Do they even sleep?) you really are an amazing woman. Keep on keeping on!! Hugs my strong friend.
Runor? Lynne(50's)?
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Mae~~~~I am not happy about this at all!
He’s always one of the interesting ones!! 0 -
Hello Sisters - Have not posted in awhile...was holding my breath until CT results...
ONC went over them with me on Monday: No changes.
Doesn't feel like it, but this is great news.
For weeks, I braced myself for the worst progression news because I was sure I would hear it...I was determined not to cry or get upset...just stay numb...
So when I heard this good news, I was not braced to deal with it...I lost it...all the while, my precious DH watched helplessly...
New ONC is my angel and is so supportive. She knew just what to say to help me calm down.
We also did blood draw for Guardant liquid biopsy.
We also started the process for genetic testing. My siblings and I found out in the last year that we have 50%ish Ashkenazi Jewish ancestry...this was a total shock because my family is from the Bible belt...we also know it comes from my dad's side... this is a whole other storyline...we may never know the REAL story...
With this new genetic ancestry info, ONC is very willing to help me test all that to see what implications there are for my treatment. No known BC history except me and my sister (DCIS stage 0 dx'd just weeks after me). For some reason, with all the diagnostic workup and extensive tx I had for initial bilateral stage 3 then stage 4, I never had BRCA1/2 testing done. Both my sisters had it but not me. They were both negative...
Ok enough rambling.
Have been keeping up with your posts and am very grateful for you all.
Gumdoctor
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Good afternoon all
Great news gumdoctor!!!!!!
39 year wedding anniversary yesterday. Spent the day with DH doing nothing, I call it putting around. Went for a walk on riverwalk here it’s a nice wide paved walking biking trail along Hillsborough river runs into gulf. Watched the sunset then ate dinner. We even had dessert.
Hope all is well with all the missing ladies that Micmel pointed out.
Tanya
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Yay, Gumdoctor! Glad your onc is good to you.
Happy Anniversary, Tanya. I'm glad you two had a good day together.
Glad you're home, Mae, but I'll bet you're planning your next trip.
Hi, Tracy!
JFL, thanks for Saint Agatha. Now I'll know two saints for this reality. As Micmel said, it's comforting to think someone is listening.
I'm changing a couple of things in my med and supplements to try to feel better. Fingers crossed.
Hello and healing thoughts to everyone.
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Yay gumdoctor, good news 😀
Muddling, yes, I am planning my next trip, I think DH and I will visit his niece and her family in Vermont.
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I'm here dear Micmel and everyone else. Read daily. This is where I need to touch down to stay grounded and feel like I am surrounded by people who 'get it'. I think of all of you all the time.
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Last week We got the results of my masters chest & pelvic CT. I was certain there would be spread, but turns out no new areas of mets just the existing areas growing. They even see the skin mets on CT now. Then we drove north to visit family for the weekend. I wanted to just zone out. Saw palliative care yesterday and I am switching from morphine to methadone for pain management. Hope this works so that the pain of transitioning is worth it. I also hope this will help my fatty liver (caused by all the pain meds), but won’t know about that for a while. I’m kind of just over it all in a funky mood today. I just want to relax and not give any care to cancer, appointments, medications, bowel movements and the rest. So while I was in the store getting more gauze bandages I saw this cool nail polish that changes color; yellow is warm, Orange is cold. Then me being me I added a sparkle top coat.
Good for you Micmel getting up and seizing the day, however much that ends up being for you. I’m proud you are trying to do more and get your energy/life back. Of course don’t over do it
hugs sister
Mae 100% agree about your own bed. I wish I could pack mine up and take it with me.
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Gumdoctor~I am so very happy to read about your news. It does so much for my soul to hear of happiness, I understand the holding the breath waiting for results. It's like an individual Inner Hell that only someone like us understands. 🌹😁 hugs to you !
Runor~Hello darling, thanks for letting us know you're doing well. I know well may be a stretch for some of us, but a woman can dream. I've been spending a lot of time. With my dad. I do most of his laundry. I am the one there every day with the except of once or twice a week. I have to rest. I am building a special relationship with him. He trusts me. He knows when I transfer him to the bed, I will NOT hurt or drop him. I am very gentle and kind. He actually prefers me over the nurses. It warms my heart so much. I understand him. Even my step mother has been asking me “what is he saying"? So I understand him. He wants me to be the one to take him outside for his cigarettes... he says we have a system.... which we do. I am so glad to see you!
Tanya~Hello beautiful, the walk sounds awesome & happy anniversary 💐🌹🍾 that my sister is a beautiful thing. Love makes the world a better place to be. The walk, the sunset, the dessert, romantic. Loving that so much! May every year be as special. And romantic. So glad you shared ! I'm still smiling...
muddling ~I hope the changes in your medicines and the tweaks you're making are exactly what you need. I have altered things several times. Share what works. Lol. Hugs to you friend!
Mae~ there you go again ..... traveling to Vermont? Never been there before. Take lots of pics..... Shame you can't take the critter cam all around with you. Lol be safe ! Much love !
Bigbhome~hope all is well sister. Lynne(50's) love you. Chelle .. you too. Hello santabarbarian! Rosie... Kayla....masonsma....Donna...Minnie our darling!!! Daniel and Leslie. Thinking of you and your little family! Blueshine...GP....Hope...Dodgersgirl..Nanette...Jensgotthis....cureious...ichangedmyname.....a beautifulsunset...Grannax...Hope the meeting went well! Gracie...missing you...and of course I'll be back if I ve forgotten anyone. Our new friend Tracy... elleonwheels..JKL...JFL... Divine....pots...Skitzbit.....stillivin...Marianelizabeth.....
Parry~ my girl .... my sweet beautiful sister. I am thankful there are no new spots. Now they must focus on finding the ticket to bring those exsisting ones to dry up and go the hell away!! Nothing new... is a very good thing my friend. Dealing with what is there is enough. I'm glad you wanted to just be removed from all of the crap that comes along with it. If you ask me it's a shit stew!! I have been focusing on my father. I don't know how long I'll have him, so I want him to know that he can count on me. Family makes you want to get healthy. They make you want to fight. I want to be myself strong mighty self again. I would be able to even help him more. I was all muscle. But now I can feel the weakness in my legs. In my calves. I feel clumsier. But when I'm with my dad. I am focused and I am not the cancer person at that moment. I am his daughter helping him and being his nurse/daughter. I am very glad to see your name today. Love you. ~M~
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Hooray...I think I stable is as good as it gets for most of us! Stay sleeping MF cancer. (Gee..I'm using language here that I haven't used since I was working!) I check in daily, seeing what's up or down or sideways. You're my peeps too. I don't post much mainly b/c you guys have already said it better.
Micmel, I am so happy to hear that you are planning an RV road trip to the ocean. I hope you do it soon, even if it's a quick trip. I'm also excited to hear that you are doing more and getting stronger. These moments and time with your dad are special, I hope you are getting some pictures with him. Go girl!
Gumdoctor, you deserve some good news! Grannax, in your pocket for the family meeting though I may want to pop out and kick ass so I hope someone reigns me in. Tanya, love the pics of your family, what a blessing. Parry...yup I'm with you, so over it. My perfect escape is to get a facial...for that 1.5 Hours I feel pampered and can just be. Mae, I so want to hang out with you on a road trip...any tours to Canada on the agenda?
While i’m still Stable, I'm on a self-improvement mission. I got my port out on Friday...yay, no more blood thinners! My MO says when the time comes for next chemo I get Xeloda, so no port for a while. I have a bruise on my neck where the radiologist had to push/pull to get it out. Today I had dental surgery to pull a molar that had an abscess under the crown and get an implant put in. Taking Tylenol 3 and Ibuprofin tonight to keep the pain dialled back. And this week I started an exercise program....I am determined to get some mobility back. My core muscles have gone missing. I have a hard time standing up from the floor which means I can't Keep up with my grandson. Lol exercise class 1 was all done lying on the floor except for the last 10 min. Boy was I ever sore last night...a good sore.
Be well ladies, welcome new comers. I’m grateful for all of you.
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Good morning, ladies. The meeting is in two days, yes I'm getting anxious but so glad it will finally be over. I've been pre occupied with some other things, and everything seems to be going so well with my family since the gymnastics meet I haven't worried about it much.
I've been on this spring cleaning binge, it's like I'm trying to get ready for company to come but no one is coming that I know of. I did get a few flowers planted, nothing to brag about. You see I have a black thumb, I could show you pics of my BFF garden and pretend it's mine. Lol Anyway, I'll be excited if they live.
I went to get labs yesterday to recheck my low potassium, etc. I could really tell when my potassium started going back up that's when I started cleaning like a crazy person.
So, Saturday is the family meeting, Sunday is PET prep, Monday is PET and Thursday is Dr Visit to get results and TX options. I've been lurking on the clinical trial thread and some are having such good results that I am hoping that a clinical trial is an option for me. It's gonna be a busy, scanxiety ridden week but I'm so ready to know what's next for me and my family.
I've also been having fun shopping for new clothes. I'm still losing weight. I've had to get all new capris, that's what I wear in summer. Gone are the shorts, except I did buy a pair of cut offs jeans shorts with rips in them. My granddaughter will think I'm a very cool Granna when she sees them. Another good thing is that I've started going to church again. That is filling a huge void that has been missing since my husband died. It feels really good, it's a smaller church than the one my husband and I were so active in for so long. I even bought a "church" dress.
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Hi everyone, good to hear of stable sisters. Just got over my jet lag in time for usual treatments. Feeling good to be back in my own bed, as Mae says there's nothing quite like your own bed. Spring is trying hard here, though one day is hot and sunny, next day is cool and breezy. I'm sure it will settle soon. Have been out today for lunch, a friends birthday, lovely seafood by the sea! So get going Micmel in that RV, you want to sit with your beloved and look at the ocean!
Love to everyone, think of you all xx
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Pots~Hello there lovely lady!! I needed to rest today, step mother took her turn today and I slept the entire day. My DH and I have realized I have a serious issue with my diet. I just don't eat. I'm never hungry until I'm hangry and sick, with a pounding headache and no energy. It's definitely part of my problem. I don't have any energy to cook, nor do I have any desire to cook. I am freaking exhausted 24 hours a day and any other simple time of quick energy I may muster up first thing. I spend doing my father's laundry and visiting him. By then I am just spent. I nap too late into the evening and then I am just not tired until after midnight. Kinda like now. I have to do a better job with my eating. Having MBC really sucks .
Grannax~I amfeeling such a need to clean. I don't know how you do it. But you're amazing. I am sending the strongest and most supportive vibes I can even think of. The meeting should go wonderfully considering you have been so involved and those amazing pics you posted of your little star! Tells it all. ! Love the grand parenting and pray to someday have that. Hugs beautiful woman!
Minnie~ Hello our other traveler!! Hope you slept well in your own bed. God knows there is nothing like it. It's like the saying home sweet home. There is a reason for that phrase. Or home is where the heart is. Welcome back lovely. We missed you
Ladies~ anyone seen MJH, or Lynne(50's). Scwilly? 🥺. Divine?? Lynnwood? You ok ?
I'm struggling. One day I feel like I can dig in and fight however long I am able to. Other days I feel like I'm ninety. I feel sluggish tired beat exhausted drained spent donezo empty tank, weary... I don't need to go on. I feel distraught today. I am starting #29 on ibrance scared to death of progression. Have never had any before. Don't want to start. Now. My onc seems convinced I'm going to break his record. He says “ you have limited disease". It sure doesn't feel like it. I know it's all the heavy chemo I d been through, that will never allow me to be myself again. I cry a lot. I still can't believe after three years, I am still crying a lot and I still just can't believe that this has happened.
I don't think I'll ever accept it. Ever! I try and I try.
~M~
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hi Micmel,
I completely understand how you are feeling. I was in bed at 7pm last night and watched reruns of Law n Order which feels oddly soothing to me to do.
I just got in from salsa dancing. And man, my body was tired tonight!! I went with two of my close girlfriends who are a couple years older than me (I'm 42). We all met over 12 years ago in the salsa scene. We left the club at midnight to come home. When we were leaving the club, people older than me were just arriving asking me where I was going! Lord!
When my friends and I got to our neighborhood, we had taken an Uber, all of us were moaning and groaning and hobbling and cracking up!!! We are getting old!!! It made me feel better that it wasn't just me!! And I'm the one with MBC!!! Made me feel less alone.
But seriously - I get it. It's like some days there's just no energy and the darkness of the possibilities of what may lay ahead overcome the mind.
I heard somewhere that Bhutan is the happiest country because people there are taught to think about their death 10 times a day. I must be the happiest person on the planet with how much I think about my death eek
Sending you a hug,
Philly
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Stopped by to catch up with everyone! It’s good to see your stories!
Micmel, you’ll always be glad you have had this time with your Dad!
A friend is visiting Bhutan right now. I’ll ask her if they are all happy when she gets back 🙂.
Visiting DH in Illinois this weekend. Gray and drizzling, but I love the company. Six more weeks in Colorado before my “grandma sabbatical” ends. Wow- it flew by. Baby girl is eight months old and so sweet. I’m grateful I washere to meet her!
Enjoy the weekend ladies!
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Well my friends, it was 4 years ago today that I found out that my cancer had metastasized. I found out last night that Ibrance/ Letrazole has failed me after 4 years of stability. This is my first progression. My lungs and liver are clear. The progression is in some of the bones where we already knew there was cancer so no new bones are affected. Onc called me at 9 pm because she knows I hate the waiting. Will be reviewing my pet scan with the radiologist, by the time she got the results and went to radiology there was no one there. So looks like Xeloda will be my next treatment. Onc will see me weekly to gage my side effects and monitor my dosage. If only my @&$#%€ insurance company would have approved that pet scan months ago when she suspected progression. Curious as to why this was not picked up on the bone scan I had, which actually looked a lot better then my last one. I'll be making a list of questions.
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Good morning all
Lynwood 1960 I’m sorry to hear about your progression. I celebrate your four warrior years on Ibrance. The fight continues with Xeloda. Sending lengthy hugs.
Tanya
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Lynwood, sorry to hear about progression. Stay strong xx
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Philly ~ I’m smiling thinking about you salsa dancing. I toast to you. That’s amazing. I am 48 and feel 88. I did manage to dance at my daughters reception. I don’t know how. But I did. I am just sad all the time because I am watching my father deteriorate daily. I think you’re amazing . I never learned to dance like that. I guess we all have our off emotional days! My DH is Here and he brings me such joy and love. I just cried ugly cried and he held me. Like he always does . I yearn for him to be happy as. Well. I can’t imagine Loving someone who literally falls apart weekly from something or other. Chronic being one of the ways we are forced to live !!!!0 -
Lynnwood, I am sorry to hear about your progression. I know how traumatic that news can be. I found xeloda to be an easily-tolerated treatment. Granted, I was only on it for a few months, but I did not experience any issues during that time. Since hand/foot syndrome is the most common SE, I would recommend that you use a skin cream such as Utterly Smooth cream on your hands and feet every morning and evening. It will help prevent or lessen that SE. I hope you have a long run on Xeloda with no or minimal SEs. You will find lots of good advice on the xeloda thread.
I am way behind on this thread and will try to catch up. In the meantime, I will not try to mention everyone by name since I will leave someone out by mistake.
I have been very busy lately - lunches out with friends, visiting sons/grandchildren, beginning to rake out my gardens, etc. I continue to feel good. I had my eighth weekly taxol infusion on Tuesday followed by a blood transfusion on Wednesday. I have next week off,then I will begin a schedule of three weeks on/one week off. My dh and I attended our grandson’s school play last night. It was really well done for a small elementary school. It was the Wizard if Oz, and our grandson was the wizard. Spring is here, and that means that spring sports will begin soon. Our grandchildren each play one or more spring sports, so we will make the rounds of track meets, soccer and baseball games, and lacrosse matches. Of course none of the grandchildren are on the same teams, and they live in three different states, so we will be running around a lot. It will be fun. Other than that, I am anxiously awaiting the gardening season.
I will try to catch up later, but I might just start back up fromhere because this thread moves quickly.
Hugs and prayers from, Lynne
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Nice to hear from you Lynne! Glad you are feeling well. Gardening season for me is to buy some pansies and plant them in pots and then try to remember to water them, lol. I do not have a green thumb! Another talent I lack is any kind of rhythm, so I am envious of your salsa dancing, Philly. Sounds like great exercise.
Micmel, I get it. Been kinda down myself. I developed a fever Tuesday night and was told to head over to the ER. I was admitted and spent two nights in the hospital. Blood levels very low or non existent. They never did find an infection, but I got lots of antibiotics dripped in, as well as a blood transfusion and a platelets transfusion. Apparently the A/C hit me pretty hard. Home now and even though it was only two nights, I can relate to all the travelers talking about being back in your own bed! Trying to get a positive attitude back. I am supposed to travel to Washington DC and Boston next Wednesday. I won’t know till Tuesday whether my MO will approve of that.
Donna
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Donna, I am sorry that you had to spend time in the hospital. I am glad that you are home and feeling better. I can understand why you appreciated being back in your own bed. I think that hospitals are not good places to get rest or sleep. Will you continue on the same dose of A/C or will that be adjusted? It seems that no two people react the same way to treatment, and it is impossible to predict what will happen. I hope you don’t have to postpone your trip. How are you feeling?
Hugs and prayers from, Lynne
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I did get some of my labs back. Potassium is back in normal range. My blood sugars are evidently going way down as a result of going off of AA and continued weight loss. It was only 66, below normal but my PCP is ok with that. She may take me off of more of my meds, that would be cool. Also, my lipid profile was beyond better than while I was on AA. That drug almost killed me. I am going to report all of my SE on the FDA website, at my PCP's urging. My triglycerides went up over 600, now 168. Same with cholesterol levels, they skyrocketed now back to normal. As you know I had the most horrible six weeks of my life on that combo. But, just getting off of it does not fix all the problems it had created with me. Sure, it's technically out of my system in a week but then your body has to recover. By then I was on other meds! Crazy making. There's no rest for us. I'm convinced that AA played a huge part in the escalation and losing my temper with my DD. Just that event has torn me and my family up since February 25. That's a very big chunk of my life. Rant over.
Lynnwood. You must be so blankety blank shocked after four years! Hard words to hear. So sorry. I only took Xeloda for two weeks, 3000 a day. I had absolutely no trouble with it. In fact, my new MO might put me back on it. That would be fine with me. The Xeloda thread has gobs of advice about how to make the hand foot SE not as bad. Of course two weeks is not long enough for it to have a chance to work on my mets. The other TX she mentioned is a clinical trial. Waiting to find out.
My new MO has sent my recent liver BX for Genomic testing with a company called Tempest. I've heard that SK uses that one too. I just wish it would come back in time to use the information to make TX decisions. I know so many trials require it and use it to decide which trial I could be in.
Whoever mentioned that their idea of gardening is putting some pansies in a pot and trying to remember to water them, that's me exactly. But, my pot of pansies does look beautiful. LOL
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Hello, dear ones,
Been following along, but somehow not up for posting. Anyway I am doing quite well. it was a busy month of March for me with DH in New Zealand. had to literally keep home fires burning, manage my grandson's schedule, and lots of appmnts/procedures. We did fine, but glad he is back! What a beautiful country; the photos are spectacular!
I had a port put in on Tuesday and received my second Doxil infusion yesterday. Both uneventful really; a bit sore from port, but it's healing well. I am beyond grateful to be feeling well. My MO told me that I am a "tough broad"! I took that as a compliment.
heading to Florida for our family vacation on Tuesday and we are all quite looking forward to it! Here in Maine, the predominant colors are gray and brown. Spring takes an eternity to get here. I will look forward to the beginning of gardening season when I get back. Still not even quite warm enough here even for pansies.
As quite a few have stated before me, this is my grounding place, my place of unconditional support. I am so grateful for each of you and I empathize with your struggles as we go along on the highway to hell.
Much love, Mary Jane
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Lynnwood, sorry to hear about your progression. 4 years is an impressive run on Ibrance. I don't know of anyone else who has made it that long. When you were first diagnosed, did you have bone mets only or did you have liver or lung mets at that point? Regardless, it must be some small relief that the progression is only in your bones. I found Xeloda more tolerable than Ibrance although I found Ibrance pretty tolerable.
IChangedMyName, I am picturing the whole salsa evening . . . .I used to dabble in the NYC salsa scene when I was in my 20s. Sounds like fun but yes, I imagine I would be creaking, cracking and aching if I did a salsa night now. I am also 42. I do try to exercise but have found I usually do it later in the day as my recovery period is longer and I may not be able to do too much more if I try to run earlier in the day. I am fine while I am out there exercising but my body now needs a recovery period as if I ran a half marathon when I am really only running 1-2 miles out of the 3 miles that I do and walking the rest. Sad!!!
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JFK, I’ve been bone mets only since the beginning. My onc says I have been on Ibrance longer then any patient that she knows. She still has me taking it until I get the Xeloda set up. It’s always unsettling to hear of progression and this is my first time hearing it but we had suspected it. Ct and bone scan did not pick it up, took many months and 3 peer to peer consults and denials from the insurance company before they approved the pet. My onc was upset when I talked to her, said if they would have approved it when she first requested it we would have had a jump on things. I already have a list of questions for her regarding Xeloda. Cancer is not for the faint of heart.
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