How long have you been Stage IV?
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@eleanora My CEA blipped up once or twice and went right back down. Possibly it's a lab thing. I can understand your pain about your granddaughter. Mine is 10 and I hope to see her graduate high school.
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Saw this on another site and it made me think of all stage IV women (me included).
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@eleanora Love it! Thanks for sharing 🤗.
I’m always interested when I read postings that mention CEA and CA-15 test results. Both of mine are so astronomically high that I marvel at how low yours’ are! Plus, mine have been slowly rising since I started treatment in Jan/Feb. My MO and team are not overly concerned - they say we need to take into account my forced vacations from Kisqali (due to illnesses) and my big picture. My big picture looks like the meds have been working - pleural effusion and drain are gone! Plus, my QOF is rather good considering. Guess the scans I have scheduled for mid-July will be the real tell - it’s just that it’s hard to expect good results with such terrible markers. To be seen…wishing all a comfortable and fun weekend! juliana xo
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Glad you enjoyed it. After I was diagnosed as stage IV, my CEA was in the low 30s. It declined VERY slowly over the course of about 18 months and caused me great anxiety. My MO provided no comfort or information as to why.
Through my own reading, I've learned that inflammation can elevate CEA levels, and Kisqali causes severe intestinal inflammation for many of us. I also have significant osteoarthritis, another source of inflammation. Stress can also elevate it.
Fingers crossed for your July scans.
Eleanora
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Good morning, all! It's been kind of quiet on this thread lately. Hope that's a sign that everyone is busy enjoying some outdoor activities. We have had some lovely weather the past several days, but the temps will be in the 90s this weekend. Yikes!
Quick update: I am currently using a BodyGuardian Mini Plus heart monitor for 14 days. On day 5 today. As I mentioned in April, I was having lots of heart palpitations and shortness of breath. Those symptoms have subsided greatly in the past few weeks, but thought it best to get the monitor to see if there are any issues. So now with both a port and heart monitor on my upper chest, my summer wardrobe choices are very limited! 🤣My biggest problems are still sinus pressure and totally stuffed up sinuses, heartburn, and shortness of breath. My ENT did prescribe Budesonide (a liquid steroid that I put in my nasal rinse each day). I have been doing this for 16 days now with very little improvement, but I read it can take months! So, guess I have to wait and see. I do believe that anastrozole may be an indirect contributor to some of these issues.
I don't know if any of you have had a heart monitor or used Budesonide in a nasal rinse. Any input would be appreciated.
Wishing you all a wonderful week. Heading to brunch with my neighbor soon.
Hugs, Pam 💗
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Hi @livinglifenow Pam, I’m sorry I can’t be any help to you with regards to the heart monitor or the Budesonide as I have not used either but I hope that the heart palpitations and shortness of breath get resolved soon! That’s got to be irritating on top of everything else! As far as the summer wardrobe, I’m sure you’ll look great in what ever you have😀! It’s hot and muggy here in my neck of the woods with temps in the 90’s by Thursday but we have had so much rain! Hope you have a great time at Brunch! Hope all the ladies on here are having a good day❤️
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Hi all! @livinglifenow Pam, I’m sorry I can’t help with your issues. Hope they respond to treament fast!! I will be sending good vibes! I remember when I had the pleural effusion and had trouble breathing, it was so uncomfortable and very scary. I’m plagued with an annoying cough that gets worse when I am on my off week with Kisqali. In public, people think I am spewing toxins… thankfully I’m back on as of yesterday so hope it will subside again.
@eleanora thank you for your input on your CEA! it was comforting seeing your numbers were similar to mine.
However, I am thrilled to report that both my CEA and CA-15 went down ~25%! Just learned this yesterday. My CEA was over 50 but is now 38! My CA-15 is still in outer space but it did reduce this past month - has to be from the Kisqali (😍). These results were not available when I was with my MO but he bet me they would both be lower and he was right. He will now get a present from Alaska.
We are off tomorrow to Vancouver for a few days, then a 7 day Alaska cruise and then a few days in LA with cousins (who I haven’t seen since last year before my diagnosis). Packing for this trip was a bitch - too many weather zones! I will have wifi so may check in but, if not, assume we are having a great time and I will catch up with you all when I am home at month’s end.
I will hope and pray you all stay as well and comfortable as possible and can enjoy the summer weather!
Ciao!! juliana xox1 -
@EddieJ Juliana, I am so excited for your excellent number dropping! And for all of your travel plans. My DH and I were in Alaska 10 years ago. Such a great vacation. And, the temps are very comfortable. Wishing you a great time in all the weather zones!
Hugs, Pam 💗
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I hiked in Denali some years ago and it was so so beautiful. Alaska is a dream. Beautiful waters, mountains, wildlife. Have fun, Juliana.
@livinglifenow I have known quite a few people who have had various heart issues and used monitors. It seems pretty routine, and I hope you get some relief from these problems, which can't be helped by stress.
I just had another good scan. Feeling so relieved. Now I can rest easy for another four months.
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@tougholdcrow So great to hear that your scans are all good! Enjoy the next four months. All of my big scans are next month. Hoping for good reports as well.
Hugs, Pam 💗
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@EddieJ Julianna, that’s awesome news about your CEA and CA-15 going down! @tougholdcrow congrats on the good scans! @livinglifenow Pam, praying for good scans for you next month! Hope you all are having a good day❤️
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Hooray for good scans!
@EddieJ
Hope your trip is wonderful!!
@livinglifenow
Fingers crossed for your July scans.
Hope everyone stays comfortable in the summer heat.
Eleanora
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Last week, I had yet another blood test. My CA 27-29 fell another 10 points to 30. Started Kisqali and just finished two cycles. But my CEA shot up from 25 to 38. Still in normal range, but I freaked of course. I read that it could be a flare in response to new treatment and could be dead cells.
Does anyone have any experience with this? Seems so odd one would continue to drop, while another just shoots right up.
Is is possible to get labs where you don't worry about something? 🤔
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@hippmark The age old question regarding tumor markers . . . I can relate my experience: I get both the CA27.29 and the CA15-3. For me, the CA15-3 seems to be more accurate and in alignment with my imaging, etc. The CA27.29 can go up or down and doesn’t seem to trend as well. Perhaps, for me, it lags more and is trending with what happened several months ago. For example, the CA27.29 may go up now due to dying tumors from my radiation two months ago, whereas the CA15-3 has been trending down since radiation treatment. So, I tend to focus on the CA15-3 and not worry about the other unless it were to skyrocket out of the normal range.
Don’t know how much that helps, but as long as it’s within normal range and your CA27-29 is looking good, things should be OK!
Hugs, Pam 💗0 -
Thanks! My MO does not run 15-3. Only 27-29 and he, unfortunately, depends on that one marker WAY too much. I've told him repeatedly that I don't find it to be accurate. He says it's 90 percent accurate. According to who? I agree, I believe it lags behind. Why he considers that the all within all, I have no idea. His reasoning for running or not running certain tests defies logic.
As for the CEA? Not a clue!
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Ive been metastatic for 13 years and was de novo. I was 56 years old. Im still going strong with my kids, grandkids, DH, travel and friends and family. It’s been a good life and I look forward to many years ahead, thanks to Herceptin, which I’ve been on the whole time.
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@lynn1234 That is so awesome to hear! Congrats! I hope to be like you. Just over 1 year MBC for me.
Hugs, Pam 💗
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I’ve been fortunate that the mets have stayed in my bones for now. I hope the best for you living life now!
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@lynn1234 Congratulations on 13 years!Thats awesome. Like @livinglifenow says I hope to be like you too! Hope everyone is having a good day!
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Good morning, all! Hope everyone is enjoying a wonderful summer. Things have been pretty calm here. Just believe I am starting to really feel the effects of anastrozole: achy body (muscles/joints) and some headaches (though most of them might be sinus related), and of course some fatigue (although some of the fatigue may still be from the radiation treatment in April???).
What anastrozole side effects have others experienced, and did they lesson at some point? Any tips for treating the side effects? I have tried Claritin, but with little success.
Anyway, back to more enjoyable topics! The play I am directing at our local community theater has auditions this Sunday and Monday. I am so excited to get a fabulous cast in place and start rehearsals. This whole project will certainly keep me busy, and that is the best medicine.
What are the rest of you up to? I know there have been some exciting trips that were talked about. Please keep us posted. All of you are so precious to me and keep me in a positive frame of mind.
Best to all!
Hugs, Pam 💗
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@livinglifenow Pam-Wow-congrats on directing a play. What a project! Hope some great people show up for auditions.
I've never been on anastrole but can relate to your achy body. I'm trying Tiger Balm today. Went to an acupuncturist yesterday and that's what she suggested. I'm working on a sermon here, doing a few chores and may take a walk later. The weather is really pleasant-seventies instead of the 90's we were having.
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@chicagoan I see you are on letrozole, which is very similar in its SEs to anastrozole. My doctor typically starts patients on anastrozole and if they have issue puts them on letrozole, and finally exemestane. Just don't think that switching to letrozole will make much difference. So many women who do switch find that the SEs continue. I may just stick with the anastrozole for the next few months and see if SEs lighten up.
Enjoy your lovely weather. Sounds beautiful!
Hugs, Pam 💗
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@livinglifenow I'm on letrozole, and the joint pain can be quite bad. I use Arnica cream and take the occasional aspirin. I use THC to sleep and for pain relief. I also find that stretching exercises really help. The fatigue is sometimes difficult to manage, but I try to keep moving. I suspect that all these estrogen suppressing drugs have similar side effects. It's no picnic, but . .. .better than the alternative! Happy to be alive.
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@tougholdcrow Thanks for the suggestions. I believe you are right about the stretching. 🙆♀️ I used to stretch quite a bit every day, but fatigue makes me a bit lazy. It’s such a difficult balance. Hope your aches improve soon!
Hugs, Pam 💗
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good morning everyone :)
I’ve been experiencing more fatigue and joint pain than usual. I just feel my whole body needs real “rest” and a good massage. Tbh I thought it might be progression in my bones but after reading what you shared I’m thinking maybe it’s just SE.
I removed my ovaries beginning of May as a preventative measure so I stopped Zoladex and I’m only taking Faslodex shots now. I already developed osteoporosis and osteopenia early this year.
Wishing you a great day ♥️
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@livinglifenow I was on anastrazole for 7 years after treatment for stage 2. At first the SEs were bad. Joint pain and fatigue. The side effects either subsided somewhat or I just got used to it. I hope it’s the same for you
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@AJ Thanks for the encouraging words. I hope I feel better soon. I know exercise helps, so I do need to move more. Glad to hear it has a chance of improving. @radiation_cinderella Sorry to hear you have been through so much lately. I just saw my PCP on Friday and was telling him about all of my SEs. He said, “That Anastrozole is a rough medication.” He has lots of elderly patients, so has probably heard it all. Hope your aches and pains improve soon.
Oh, just wanted to let everyone know that I finished my heart monitor test. It showed no arrhythmia or afib, just palpitations from time to time. Nothing to worry about in that regard. However, I still wonder if there might be something else going on with my heart that isn’t detected by a heart monitor.
My PCP did strongly suggest I commit to taking Pantoprazole morning and evening for 8 weeks to see if that alleviates my “chest pain.” The once a day Nexium didn’t help much. So, I just started Pantoprazole. Do hope it does the trick. My heartburn started up again when I restarted Anastrozole the end of December. Oh, the joys of being on so many medications! 💊
Wishing everyone a sweet and sensational Sunday!
Hugs, Pam 💗
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@livinglifenow Pam, I’m taking anastrozole too and I do have some SE’s as well . Funny enough I’ve been having some heartburn as well. I hope your SE’s go away soon.Im so glad your heart monitor test is over with and that there are no issues. I hope everyone has great day!❤️
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@ssales13 Thanks for sharing your information about heartburn as well. I do believe it is a factor. We’ll see if the eight weeks of meds helps tamp it down. My doctor thinks it might even be connected to my continuing sinus issues. Overall, I’m feeling slightly better in the last 24 hours.
Hope your heartburn is minimal and resolves soon. Have a great Sunday.
Hugs, Pam 💗
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