Life does not end with a stage IV diagnosis (really!)
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The first time I took celebrex was about 2015, for help with a badly arthritic right hip. I was concerned about taking it, as it had a "black box" warning for heart damage. Both my orthopedist and my primary care assured me that they had patients on it for more than a decade with no ill effects. Hip replaced in 2019 and I stopped celebrex.
About 3 years ago I noticed increased joint pain from the hormone reducing drugs and requested that my MO prescribe celebrex. My eGFR score was always above 60, but 3 times in the last 6 months it has dropped to 58. No comment from my MO so far about dropping celebrex and if there is, I will protest loudly. Absolutely agree with you on QOL. My left hip and knee have significant arthritis and I think I would need walking aids without celebrex.
I have also been on Xgeva for 3 years, and I think that can affect kidney function as well. Beginning in October, I will be dropping back to Xgeva every 8 weeks rather than the every 4 week injections I receive now. Hoping that will help with the eGFR.
Will keep you posted.
Eleanora
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@eleonora-Thank you for sharing your experience. I'm hoping to get back on it when I see my new primary care doc in August.
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Chicagoan, Eleanora,
What strength were you using of celebrex? My gp gave me a trial of 100mg just to be used as needed. She gave lots of warnings, like she's trying to scare me out if taking it. But will go to 200 as needed. Between her and my onc's PA I'm pretty well covered with prescriptions. I do like to take them sparingly but have learned xou have to stay on top of the pain to control it.
Dont let anyone tell you that a spinal hemangioma doesnt hurt. Bless the PA for the referral to a spine surgeon for second opinion about this thing. She's always good for a referral too. I did schedule the nerve block too.
Isnt this heat awful. Thank goodness for A/C.
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Be thankful you can take the meds. I understand now why my dad gave up when he had stage for cancer. Back in 1995 he had fewer options. Like him meds are sometimes worse thelan the disease. I cannot take naids. They rip my stomache apart. Celebrex keeps me awake 24/7. Recently I was on gabapentin for night sweats and developed numbness in my feet. When the heat hit my hands and feet felt like I was walking in a bed if coals. Another 1% adverse reaction. I have stopped the med and they are slowly getting better. Today I go for my regular labs and a few extra.
I hope all of you affected by the heatwave stay safe. If you are going in and out of the heat avoid excessive temperature differences. Lastly. Back in the 70's I worked for a senior center program. When I would travel around the seniors on hot days like this would always greet me with a warm drink. They said it hydrated and avoided shock. My car did not have ac back then. Life sure is different today.
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I take celebrex 100mg caplets 2x/day. I don't understand your GP's advice to "take as needed". It's my understanding that celebrex needs to accumulate for a week or two before you really feel relief. it's supposed to be taken every day, not "as needed" like Tylenol. I have no side effects, other than the occasional drop in eGFR to 58, but not sure that is from celebrex. Kisqali and Xgeva both impact the kidneys, and I also take 700 mg/day of gabapentin for nerve pain in my back, which is an NSAID that can affect the kidneys. As I noted above, I will be reducing the Xgeva frequency starting in October. I would also be willing to lower my gabapentin dosage if the eGFR keeps dropping, but I will fight to keep the celebrex.
Hope they resolve the hemangioma pain for you soon.
Eleanora
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@gailmary My celebrex was 200 mg which I took once a day. The label did say "take 1 capsule daily as needed for pain" but I agree with @eleanora it needs to be taken regularly for it to work.
@brutersmom I remember the old days with no a/c in the car. I would arrive at work soaking wet after I tried to hard to have a "professional appearance." In those days, women in my profession had to wear heels and pantyhose with a skirted suit. It was miserable!
On a non-cancer note-I guess the spirit of this thread-the grass seeds I planted are taking! I saw nothing for 2 weeks and thought it was a bust but now I just like to watch the grass grow-not boring at all for me. It's kind of exciting. Not enough to mow yet but there is definitely grass cropping up.
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Between the heat and the rain i havent gotten out to the woods. But i am finally up to sitting at sewing machine and quilting with my daughter. What a joy. I saw her little over the last 15 years. Now its daily with her right across the creek.
The celebrex 100 didnt work for anything. My drug info sheet didnt say anything about needing it to build up. But the gabapentin did and it took a few weeks to help at all.
I hope you all get to enjoy a lazy summer. We just might get to the lake yet.
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Gailmary - That all sounds absolutely wonderful with your daughter; and with a creek nearby too! Sounds like things are generally on the upswing. I will try to enjoy a lazy summer as you say, and I hope you do too. You'll get to those woods and that lake yet.
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I find nature to be very healing, and if I can see why she has been worshiped for her gifts to us. The pooch and I did get out for a kayaking adventure, which was almost too hot for the both of us. I'm playing mellow jazz on the piano and wearing my "Life is good" shirt, which has taken on more meaning as of late!
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Tougholdcrow - I totally agree about nature being so healing! I took a good walk this morning and as always, it did me wonders.
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Totally. My woods is my happy place. Then my garden and just being outside. We are in the country. I dont know if or how i could find the air to feel the same in the city. Does that make me a snob?
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Hi all,
I'm a city person who loves being outside but sometimes even in parks, forest preserves or the Chicago river it is too noisy. Today a friend and I went on an adventure to the far southeast side of Chicago. My niece mentioned there was a great park there-"Steel Worker's Park" so we stopped by there. It was amazing. We were the only visitors beside the staff. It was so quiet except for the chirping of birds and the sound of leaves rustling in the wind. It is obviously on the site of an old steel mill. You can sit there completely alone, enjoying the lake. An unbelievable find in this busy city. @gailmary I don't think you are a snob for preferring the country. You just know what you like!
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Nature is very healing and I spend as much time in it as possible.
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My feelings, exactly. Great depiction, Eleanora.
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I hope everyone enjoyed the holiday. We went to a picnic after heavy morning rain it was a lovely day. The friends gardens were gorgeous. The heat wasn't so bad with shade and fans set outside. Perfect.
No fireworks for us. Many neighbors put on a good show out here in the country, but not last night. Milwaukee quit doing them cause of expense but there was a drone show. I haven't heard yet how well that went over. Most towns have fireworks but with so many neighbors firing them off we don't go anywhere to get our fill.
It's still a holiday weekend. Are you enjoying it?
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@gailmary I'm glad to know that about Milwaukee. I went up 4th of July weekend during Covid, and the show was canceled b/c of that. I always thought I would go up again for 4th of July but am not as interested in a drone show. Chicago also no longer has fireworks. It's so sad-July 3rd used to be our night. It was magical. I did go to a patriotic music concert last night. Many of my neighbors shoot off fireworks-I hate them. It's so loud and goes on all night. In the city our houses are so close together that you can't avoid them. It's only one night so I figure let them have their fun.
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@chicagoan , they still have Summerfest for 3 week-ends. I'd check online to see who is playing when.
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I do enjoy Summerfest-I've seen James Taylor there a few times. It is so crowded now that it is almost too much for me.
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In honor of exbrnxgrl, who started this lovely thread, may she rest in peace. This was the first thread I read and commented on at the start of my MBC experience. She will always have a place in my heart.
🕯
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Rest In Peace
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We are so grateful for @exbrnxgrl. She is sorely missed. We send you all gentle hugs.
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I have just received diagnosis for bone Mets after being clean for 8 years from lumpectomy. Pet scan next week. Can somebody please point me in right direction as I am having horrible back pain . Is there a newly diagnosed section in this site? I don’t know how to get there. Thank you in advance🙏❤️
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@xsuzx. Sorry you are here. My cancer came back after 7.5 years. I am sure you are feeling overwhelmed right now. Getting through the initial testing is the worst. You will find people in any topic will help you out and answer questions. My mets were in the pleural of my lung. Google had me dead in 3-9 months. So don't believe everything you read. That was 3 years ago. There are so many new meds out.
Did you have a biopsy. Do you know what your estrogen and progesterone status are? Did the tell you if you are her2 +/- or low. If you know those create a signature. It will help people better answer your questions. Also, share the meds you are on in the signature.
Find the chats that best fit your cancer and meds. You will find new members and veterans to this awful disease. The beginning is hard. The side effects to meds can be challenging but there is a lot to be learned from the members here so just start asking questions.
Last there is a search bar to search topics on meds, types of cancers, locations, etc
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@xsuzx THere is a bone mets thread you can join, and others as you discover what your treatment will be. The beginning is really scary, as @brutersmom says, but people are living a ;pt longer now with this diagnosis.
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Thank you so much🫶 Let the journey begin!
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I will find out all those stages etc 12/10 and will have a clearer idea so I can post accordingly. Thank you both🫶
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Hi @xsuzx we’re glad you found us but like @brutersmom said we are sorry that you are here. That being said, this is a great place to land to get tips, lots of information and encouragement. I was clear for 11 years and then received the dx of bone mets almost 2 years ago. The beginning steps can be a bit overwhelming. Like you said after your 12/10 appointment things will start coming together. Depending on your treatment and meds you will find plenty of chats to help you. As far as the back pain for right now, other than icy hot patches and OTC pain relievers maybe you can ask your contact at facility that diagnosed you what they can do for you? Wishing you the best! And keep us posted…
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Thank you. I am currently taking Vicodin, soma and hot packs. Does pain get better with treatment?
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Speaking for myself with my bone mets - yes pain was significantly better; basically gone with treatment. Side effects of treatment can become the issue but we are all different. Keep a positive attitude.
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@xsuzx So sorry you are on this journey, but as all of the others have said, this is a great place to gather information and friends. I was originally diagnosed 16 years ago with stage 1, no lymph node involvement. Last year I had pain in my upper sternum that turned out to be stage IV BC. I have now been on treatment for over a year. I, like you, was terrified at first. But, now, as you can see from my signature, I’ve been through quite a few things, and I am currently in remission.
Wishing you a smooth journey. Do let us know your specific diagnosis and keep us posted on how you are doing. We are all praying for you!Hugs, Pam 💗
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