Life does not end with a stage IV diagnosis (really!)
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Caryn, Congratulations. Ellie is beautiful. You must be smiling from ear to ear. I am glad that the delivery was easy and that everyone is doing well.
Lynn
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Little sweet pea! Congratulations, exbrnxgril!
Tina
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Congratulations Caryn, Ellie is beautiful! Enjoy !
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Thank you all. Life has been so hectic, I hardly can catch my breath. Next week is spring break!
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I have been on Faslodex since December 2017. I experience a lot of low back pain and joint pain. I have some deterioration of discs in my lower back anyway so that has always been a "sore" spot. I also feel a lot of "pressure" in my lower abdomen and pelvic region. I read on some other post that this feeling is like having to "poop" but not needing to. A good description.
Stuff hurts all over. I just had my latest shot of Fas and asked the onc about the pain in my chest area where the mastectomy was. He "felt me up" LOL and didn't find anything that he could say was mets. My tumor markers have risen on Fas. He seems to think it's not that bad as the rising is in small increments such as 60 points. That is, from 611 to 674 this last check.
I understand that Fas can take five to six months to begin to work so he wants to wait for one more month and check my blood work. If the CA 27 29 still continues to rise we will do a scan.
I guess my question has to do with what kind of pain anyone is experiencing, especially the low pelvic pain and feeling of pressure. Also, sometimes when I eat my stomach hurts. I have read that Fas also causes gastrointestinal issues.
Any input would be greatly appreciated.
Chats
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Oops thought I was on the Faslodex thread. I will post there.
Chats
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No worries, chats!
I have had an intensely busy school year and have not posted much lately, save for this week when I'm on spring break. I am being as lazy as one can possibly be and loving it! My younger, pre-cancer self would have been horrified by this slothfulness, but there is a lot to be said for just puttering around the house, knitting, de-cluttering and binge watching the first two seasons of The Crown. Saw the grandkids too, of course, which is a never ending pleasure.
Some of you might remember that I swore I would never let an intern/resident or any type of trainee touch me again after my beyond painful experience having a chest tube inserted in the ER several years ago (almost 7!). This is a brutal procedure in the ER, as they are less concerned about pain management than inflating your lung, but the resident made it much worse. Fast forward to yesterday... I went for a port flush and had three nurses enter my cubicle. One was a regular in the infusion center. The other two were RN's, but were training to work in infusion. They asked if I would let the trainees access and flush my port and I said yes. The experienced nurse explained my port to them. It is a petite Bard power port that has 3 palpation bumps arranged in a triangular pattern. The idea is to insert the needle in the center of the triangle. One of the trainees cleaned and prepared the site and the other attempted the insertion. OUCH! She missed the mark. Not too, too awful but unexpected since this is always a quick and easy procedure for me. She apologized and asked if she could try again. I took a deep breath and agreed. With close supervision from the experienced nurse, she did well the second time. Ah well, I believe that making mistakes is a good way to learn and our medical professionals do have to learn on living subjects at some point. I think she will be a great infusion nurse with time and experience.
Hope all are well and happy.
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Ouch, Caryn! I'm also leary of any new nurses, but especially trainees. The previous chest tube episode sounds just dreadful! As you said, though, they must get experience with living patients at some point.
I'm curious if you're still having acupuncture and if it's helped your joint pain?
My daughter and I leave tomorrow night for Kyoto, Japan, for my job, but they'll be plenty of time for fun, too, Never been there before; very excited, but anxious, too. It'll be a long haul, that's for sure.
Enjoy your lazy spring break and those grandkids.
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Bliss,
Kyoto is fascinating, a cultural treasure trove of shrines, museums and beauty. We visited there years ago and loved every moment. You'll be there in springtime, as we were. You will be amazed to see gardens where orange trees are bearing fruit at the same time cherry trees are blossoming and daffodils are blooming!
Enjoy!
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I love Japan, but have only been to Tokyo and Osaka. Have a wonderful time!
Yes, the acupuncture helped quite a bit. I made the mistake of skipping it for about a month and my pain is returning. I need to schedule an appointment soon!
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Hi Bliss, "Otanashimi" = Have a lovely time in Kyoto! Exbrngirl, so glad to hear that Acupuncture helps pain - I'll keep that in my toolbox for the future! Years ago, acupuncture really helped me combat fatigue, when I went every 3 weeks...
OK, here's my good news: CT scan shows... (drumroll, wait for it...) Lymph/sternum mets are clear; Bone mets are "sclerotic" (making structure rather than spreading); Clavical bone mets clear;... And Lung mets - (which last year looked like a "starry night in a planetarium") now are nearly clear, with the 3 tumors reduced 1/2 size (from 1.6cm to .7cm). Cancer marker is 3rd month in normal range. If markers remain stable, then we'll monitor and recheck lung mets with CT in 6-months. Dancing with NED in my near future!
This is my 26th year with BC. Ducks are in a row. I am so inspired by the "long-timers" who share here at BCO. My motto is "Happy joyous and free"; my job is to just be "upright and smiling" as long as I can. 10 years? Love you all, Diane
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Grace DD, good news indeed! Glad the acupuncture is helping your pain, Caryn.
Just back from Kyoto, and had a wonderful time visiting shrines and temples, beautiful gardens, and eating plenty good food! The azaleas around the hotel were especially beautiful. Only hassle was dust dorms in Denver delayed us two hours, so we missed our connection at LAX. We were rerouted, but unfortunately, our luggage wasn't and sat at LAX for 3 days before being sent on. Oh well, and so it goes... Pictures tomorrow, but right now, I need more sleep!
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Hi Caryn,
I liked your thread alot. Gave me hope. How are you feeling today?
Raven
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I've been reading still, but not posting much. I've gone through the "easy" drugs and will be starting a chemo probably next week, but thankfully, my MO ok'd me taking a Baltics cruise before the switch because it had been planned for a while & I still needed to heal from my bad reactions to Afinitor. I never thought I would step foot in Russia or see the Berlin wall or any of the wonderful sights that I saw in Stockholm, Tallin, Copenhagen, and Helsinki. As hard as it is to know that things may change greatly in my life with this change in meds, I can honestly say I got every bit of enjoyment possible out of this trip. So thankful for a MO who understands and appreciates how important my "living list" trips have been for me.
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Nb, in Carmel by the sea now, Yosemite next month. Keep traveling when u can 😀
L
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nbnotes and lita,
Yes, do all you can until you can't! That's my stage IV mantra. nb, hoping for the best with your new tx.
serb4,
I'm still doing quite well, though I feel a bit more tired than usual. However, we're 3 weeks away from the end of the school year, a time when all teachers are tired, and I'm in my 60's. Despite those things I am quite content with work, family and especially my three amazing grandchildren. I know that I am very lucky, but I wish we could attribute it to more than luck, so a cure could be found. Take care.
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Two thumbs up to all the travelers! Enjoy!
Tina
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Returned this week from a trip to Salt Lake City for an Eagles concert. Always wanted to see them live, but never did. They played for almost 3 hrs. It was awesome! A bucket-list girls trip with my sister. After Glenn Frye's death and the band decided to go back on tour, I thought no more waiting! That's my mantra, no more waiting! Although I do still need to get my Kyoto photos together.
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Bliss58 - That is a great mantra, and one I am trying to live by as well. I saw the Eagles in Orlando a little over a month ago. Wasn't it an amazing concert?!?! Definitely worth it if anyone is debating about doing something like this.
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NBnotes, yes, totally amazing concert, and was so worth it! Next up, my sis and I see Robert Plant in Vail. Another performer we've never seen and checking off the bucket list because he certainly is not getting any younger, and this time will be much closer to home. BTW, a Baltics cruise? How cool! So glad you got to do that trip. Hope tx are going better for you. Let's all keep on truckin'...
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Just back from Bottlerock Festival in Northern Cal. Greatweekend with my man. Sure have gotten good at pacing myself.
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Hi. Recently, I participated in my first 5K since 2016 with finish time of 42 minutes and 20 seconds. I walked 0.1 mile, then jogged 0.1 mile over and over! It was all flat terrain. I felt I deserved a sip of beer and two pancakes afterwards!
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Wow, Sandibeach! I am in awe! That's a major accomplishment! Pancakes and beer!
Claudia
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Ok..I confess..it was a little more than a sip of beer and the pancakes had a lot of syrup on them.
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SandiBeach,
You deserved it after the 5K! I admire the fact that you were able to run some of it. I recently walked a 5K to benefit my granddaughter's school. It was a beautiful spring morning and there was a pancake breakfast afterwards, but o beer (public school). Good for you!
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Good morning all,
Yes life does continue. No exciting trips or grandchildren BUT
I am retired but just began a new job 10 hours a week as a social worker in a docs(not cancer) office Just enough to get me over the retirement $ bump, but still plenty of free time for the beach this summer. My kids are both doing reasonably well and if treatments continue in my favor - I will be here for some time, hopefully for weddings and maybe grandchildren. I am so jealous of you woman and my friends who have grandchildren. I am ready - but my kids 20 and 24, not so much LOL
And even better - as a stage 4 cancer person with a uniboob, and age 64, I have begun to see a guy who seems real and nice. I put my foot in and out of the online dating world so met many frogs (there is a book in there) - oh god the stories) So we will see where this goes
And I am spending my first full summer on Cape Cod Life is good
Be well
Nel
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Nel,
A summer on Cape Cod? Now I'm jealous! Sounds like you're doing well, which is always fabulous to hear.
Finished the school year last Thursday. Will spend June catching up on medical appointments and deferred household chores. In July, I'm headed off to NJ and then Florida. Before I know it, August will be here and time to get ready for a new school year.
Have a great summer, everyone.
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Yep, gotta live while I can....even with bowel incontinence (Depends and adult plastic pants to control those nasty blowouts), foot neuropathy, and left hand doing weird spasms b'cuz of the brain mets.
Teeth and eyes are bothering me quite a bit, but the dentist and opthamologist say it's all "chemo related," so we can only treat symptoms. We all know that the more "cycles" we have, the worse the side effects get.
Heading off to Yosemite next week, and if I'm still here, Grand Canyon and Sedona in the fall.
I know things can change at the drop of a hat. Last year at this time, I was feeling pretty cocky....my Xeloda Tx seemed to be working, but by late June, I started getting the weird eye auras and blind spots; in July getting REALLY dizzy; and by August major headaches and that scary "whooshing" sound in my ears.
MO ordered an MRI immediately, "And the next thing ya know, ol' Jed's a millionaire. Kinfolk said, 'Hey, Miss Lita, ya got 20 PLUS brain tumors stewin' away in there!' RO said 'WBR is the the thing you oughta do,' so they made me a mask, and it was the best that I could do....swimming pools, movie stars, radiation burns, balding head."
L
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Lita,
You are fabulous! I admire your get up and go despite what you're dealing with. We should all live by your advice of living while you can!
My little Ellie is now 3 1/2 months. She is very sweet and seems to be always observing everything going on around her. My other two grandchildren (her brother and cousin, respectively) adore her.
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just back from hearing my grandchild’s heartbeat after 2500 mile plane ride. Life is good. I never even heard my own children’s heartbeats before they were born never mind ultrasound pictures of that darling little face. Last year ar this time I was planning my demise. Since then I’ve changed my attitude thanks to all of you. I took a cruise in the spring and have 2 more trips planned for the fall. I met a new grandchild and will be here for another one this fall.
I’m frustrated at times . Some days I hate the pain that keeps me from from doing some things but I hear all of you especially Lita. (You are too funny with the Beverly hillbillies song.). I have my motto printed on a stone by a friend who also has stage 4. “ That day may come but it’s not today “ taken from a sister on this board.0
