Good Scan Results: Went for bone, Mammo... - SHARE Metastatic ...

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Good Scan Results

Went for bone, Mammo, and chest abdomen and pelvic ct last week. Was so lit up with all the contrast and isotopes. Tough long day that I basically read and meditated my way through. Got results yesterday and they’re very good. On Faslodex each scan gets better. Nothing new, everything shrunk. I have lung Mets. I am also on Ibrance. Not sure what that is doing as I had some progression on it and letrozole. It is so easy to feel crushed when there is progression. Just shows you what the right drug can do. I am going to exhale for a while and really put effort into healthy habits. I am very grateful to have good news, as you learn to celebrate it but not cling to it. You just never know what’s next. I pray for all of you to find that silver bullet that will knock this damn cancer on its a$& and I thank you for all the support and shared stories that take the loneliness out of this disease. 🙏❤️

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So happy to hear this news! Sending ❤️

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How long were you on Letrozole and Ibrance?

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Initially treated with taxol for lung Mets which worked well for me. I was on letrozole alone for about a year. Then Ibrance added. On that combo for about 3 years. Then some progression in lungs. Nothing new but some spots grew. Onc switched me from letrozole to faslodex. She is very proactive and watches my scans very closely. Makes radiology crazy.

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So happy for you x

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Wonderful news, made me so happy for you. ❤️

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Great news, so pleased for you. Long may it continue to work and keep shrinking. Maybe Faslodex is your silver bullet. Big hugs 💕 xx

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Hope it works long enough for the next one!

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Hi Nancy,

That is brilliant news! Thanks so much for sharing. Faslodex sounds like it is working remarkably well for you. Long may that continue. I'm with you on the loneliness front. I don't feel lonely with this disease either.

Sophie ❤

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Celebrate the great news ! ... then plan a few healthier habits ! (easier said than done ! ...l know ! )😜 x

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So happy to hear your good news! Thank you for sharing! ❤️🙏❤️

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So happy for you!

Your GOOD NEWS actually boosted my mood today.

I needed that.

THANKS❤️

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Very sweet and generous of you. 💕

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Awesome news! You are such an inspiration to us all and I love reading your posts. They are so real!!

Kim

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Perhaps too real. But thank you. I think good news shows there is always the possibility of improving results.

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Glad you had good results. Going on my 37th month of Ibrance and Letrozole.

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Glad it has worked so long for you. 😘

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Nancy

What a relief to get such great news. I think we all get suspended in time n hold our breaths waiting for results. BREATHE❤️💫🌟

I am so happy for you🙏🏻💕💕💕

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Thanks Francesca. You’re right, scans are very stressful. Even tho I am used to the procedures and tolerate the contrasts etc, I am getting tired of doing this every 6 mos to a year. And although I wasn’t as wracked with anxiety as when it was all new, and thought I was prepared to hear negative news, it sucks the energy out of you. It takes so much to prepare and deal with this all the time. That’s when I have to remind myself that if I slip up I jeopardize my life, and that I am blessed to have the best of care. Nothing can take this diagnosis away, so we have a choice. Deal or no deal. So important to have coping strategies. Requires that I talk to myself a lot. Other problems seem so insignificant in the light of this.

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Yes I know. I talk to myself a lot- even out loud sometimes to calm myself. The damn adrenaline kicks us into suspension and then comes the draining crash physiologically. I am learning to just let myself be whatever it is. A lot does not matter when we are fighting for our lives. So much does become insignificant. Especially at 65 with this wretched mbc.

You just crossed one of the finish lines in first place♥️♥️♥️♥️🎉🎉🎉yes there are more but this is a victory. Embrace it. It’s yours. Love you

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I am also steering myself more towards acceptance. I will enjoy this good news, but this disease is a constant adjustment and there is no cure. So I’m trying to accept it. Sometimes it still seems unreal that I have cancer. That used to be somebody else 😘

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I know Nancy. I worked oncology for 7 years as an administrator. When I left there went back to college for RN- while in college br ca stage 1- had b/l mast and went right back. Graduated at 57. Still unreal to me at times. I go in and out. That is part of it all.

Never thought it would come back. It’s 3 years already. I would love to live in denial and sometimes I can but then there’s drs and appointments and scans, ugh. Back to reality. Then back to work and it goes to back burner for a while. I know you are going back to school nursing. It will keep you busy. I am working out staying private with the case I have had more than a year. I am doing a lot of leg work about social security, Medicare, supplemental ins etc. I am not going back to school nursing-cannot handle two jobs, start new treatment. I want to collect in March but there are all kinds of stipulations on income. Wading thru the muck n more. I am determined to collect and work part time.

How’s journaling?

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If I get over this horrible reflux I’ve had since yesterday (can’t eat or drink without bringing it up. It may be my hiatal hernia) we are meeting with financial planners who know the ins and outs of Medicare and insurance. It is so complicated. I can’t just leave this job and depend on Medicare without a plan. The journal is sitting there waiting for me. If I don’t hold down liquids by tomorrow I’ll have to go somewhere. Ugh. I don’t feel sick. That’s why I think it’s mechanical. Really admire you took nursing on at 57. I was 37.

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I have that also. Meds for years. Have you tried nexium? Tagamet?

No I can’t be with just Medicare either. Have to buy supplemental and drug plan.

That’s why I have to keep working even part time.

Feel better♥️♥️

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Does it hurt like hell? Never had a GI consult, but it’s fetting worse. Feels like there’s broken glass down my esophagus sometimes. I wonder if it’s the drugs. I am tolerating small amounts of jello and broth.

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Nancy you may have esophagitis from the constant regurging of acid up which can be common especially when you have a hiatal hernia. You definitely need a PPI to help heal but I would recommend a GI consult and endoscopy to make sure that's what is going on.

p.s. Patients always are in agony and describe as you did

Sandra

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Thanks Sandra. I am thinking the same thing. My oncologist ‘s husband is a GI guy. I texted her that I needed to see someone tomorrow and maybe I could see him or another person they can refer. At least it would help having them both on board. Thanks. Denial isn’t just a river. Ugh

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Good luck. I hope you feel better soon. Keep us updated. Take care.

Sandra

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Hope you feel better!

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Congratulations Nancy! I am so happy for you and now you definitely have a great journal entry for your positive thoughts after getting such wonderful news.

Sandra

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According to what I remember of Genesis, God’s first creation was light. I think I’ll steal a page from that book! And although I profess no religious beliefs, I do love the 23rd Psalm. I find it very comforting. Need my stickers!

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It's funny I got more stickers yesterday....one set from Amazon is titled...' Wake Up. Kick Ass, Repeat'. They have wonderful motivational quote stickers....it really is my mind set right now.

Sandra

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So happy for you! I love the 23rd psalm as well and was delighted to watch the x-men the other night with hubby and hear all the beautiful scripture they quote on there, so refreshing for a sci-fi movie. Back to the beast, when I started only on letrozole, 3 spots got smaller and 2 weren't detectable after only 3 months, then added the ibrance and last bone scan "no progression, no change". So the nagging question on my mind is, did I jump the gun? Should I have just stayed on the letrozole until it quit working? I hate this pill-related double-mindedness! Makes me want to scream! God bless you and heal us all in Jesus name, amen! <3 xo

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Well your bone scan is stable. It’s hard to know what is doing what. Hedge your bets. Take the Ibrance for now. We all hate these meds as part of our lives, but they are. You’re doing so well. I say don’t mess with success!🙏

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I’m going to check it out. And sparkly pens too. So unlike me.

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And that's what makes it perfect....I also bought glitter pens and small journal stencils so I can make my writing look good.

Sandra

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I have a fetish for pens♥️♥️♥️

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Do tell! I had a thing for crackle glass and I love watches but can’t afford to collect them

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Hi Nancy

So glad to hear the good news. We all know there is no cure for this disease, but to hear that it has improved and no progression is the best news we can get.

Hope all of you scans show improvement.

I just stopped Taxol and will be trying Kisqali if approved by my insurance. Maybe I will have good results on my next scan.

Good luck Maybe now you can retire and find that perfect place to settle down.

Barbara

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Wrote a whole big answer then poof! It was gone. Fingers crossed on the Kisqal. It makes me angry insurance companies get to decide what treatments they’ll pay for especially if a doctor prescribes it.

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yes, I find the cost repulsive, even though my copay is only $56, I'm fixing to ask them to eat the copay because my guess is that they will sacrifice the $56 to get the $9,944.00 what do you think? I've waited all my life to have some leverage LOL, and now I'm worth a million bucks .... bwah ha ha On a serious note, I'm dropping down to 75 mg. and praying that the chest pains stop as that just started in the 4th cycle and doesn't happpen everytime, and not bad ones, feels more like what I've heard described with angina and they go away as fast as they come or I would go to the ER; but anyway I told hubby if it keeps up I'm off of it. Thanks for reading <3 xo

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Could it be reflux or Esophagitis? On my way to the ER because after I got my great cancer news, I went to a Mexican restaurant ate a taco and omg can’t hold anything down and had wicked chest pain that didn’t seem cardiac. I have a hiatal hernia and I had some symptoms a week ago but just hoped it would all go away. I can’t even keep water down. I am not nauseous and don’t feel sick. But back to you, please don’t ignore these pains. Before you dump any meds, get checked out. It may have nothing to do with the meds!🤭

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So pleased for you I love to read your words of wisdom and how well your doing a true inspiration x

Take care

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5 years ago I was a real mess still

Mess at times but I think there is hope to live more than a decade with this. And every year is another year for a better led. Thank you

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Im so very happy for you, rock on!!

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Nstonerocks - What great news! Your body is doing/responding SO WELL, which is a great reason to celebrate. Not only for this scan, but because I think it bodes well for the future! Enjoy the moment, and relax a bit about the future! Be well, Lynn

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Thanks Lynn!

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Really pleased to read of your results.My Wife Is on the same medication as you.we also have seen no progression for 18months.My wife’s mets are bones liver lung including spine.The nurses who treat my wife are wonderful .I have one concern ,understandably the injection is not pleasant,one of her nurses (who I know is being kind) injects in only one buttock ,I understood it should be administered in two buttocks .I don’t want to question her ,but do you think the treatment is as effective. If you or anybody has answers I would be very appreciative.I must add I think all you ladies are of great support to each other ,treatments have come a long way ,something good is just round the corner.

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One injection each. Gluteal muscle. It is a large thick volume of fluid. I can’t imagine getting both in one buttock. Your wife should check with oncologist and advise that nurse one injection per side. It is a little concerning it is being done that way. If you ever have a question about treatment, please don’t feel you cannot ask questions. I would run from a health care provider who could not give me a rationale for what they are doing. Your wife is lucky to have you as an advocate

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Thank you for your reply.

I will keep in touch

Regards John

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Sorry late to this post. Astra Zeneca has oncology nurses on staff to deal with these issues. I have called them when I developed sciatica. Protocol is one injection in the upper outer quadrant of each buttock. No- cannot have two in same buttock. The drug is very thick and I would definitely speak up about it. They need to be retrained.

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So very pleased for you! Thanks for sharing , as you say other's good progress brings hope to others .Have a Fab day

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I had written a long congratulatory reply, and when I pressed to reply all just disappeared.

Congratulations my friend! Hugs❤️

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Thanks Spiffy. Those two buttons are dangerously close!

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Absolutely great news that is what we like to hear!!! Celebrate !!!!!

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Wonderful news!!

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That's wonderful news!

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Great news! Very happy for you xx

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This is such great news, your story is so inspiring for me and I am sure others as well. I am so happy for you, I hope and pray this response will continue for you.

I just started my 9th cycle of letrozole, Ibrance, xgeva. My daughter is planning a big wedding for next September and l am looking forward to being there. Your story and others give me hope for being around for my sons wedding as well and then hopefully some grandchildren to follow.

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When I had some regression on letrozole and ibrance I said to myself “here we go”. Of course I was feeling sorry for myself and anxious. My onc said there were lots of meds out there and so there are. We only have so much control — I’m working on letting it go and going with what is in front of me. Easy to say when you’re not in crisis So this is great news, but I know it could change. Becca recently said “use your life”. She’s been thru so much more in everway, it made me pay attention. Plan on celebrating your children’s weddings and beyond. Do what you would have done if you did not have this diagnosis. Sorry for preaching. Officially off the soap box!

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Not a soap box at all. We all need each others support and need to lifted up every now then as well. I don't always comment on here, but I truly get so much from all the encouragement, information and even the difficult posts. Thanks again for sharing.

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Great news! So happy to hear!

😀

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Oh Nancy I'm so relieved for you! Well done! That was quite a scan list!

Now you can relax and celebrate! Yay!

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Wonderful news!!!! I have to ask - are you postmenopausal? I have been thinking about asking the onc about switching to faslodex. I am 73 and obviously postmenopausal. I am currently on the Ibrance/Letrozole combo.

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65. The shots are a literal and figurative pain in the bum. But I’ll take it as long as I get good results. Plus don’t have the body aches I had with letrozole

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Great news !

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So very happy for you!! Hope you have that celebratory glass of wine before starting the health kick! Ha! I lost 30 pounds in the first 9 months and you see where that got me! Cheers to many more good scans!!

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Thank you. I will enjoy this moment in the sun and take it as an opportunity to improve my habits and stock up on optimism!

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You go girl!!

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Well done...what a relief

Onwards and upwards...

All the best

Barb xx

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Yes another scan down. Year 5. Thanks Barb

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Oh I hope I’m like you and get to five years...so inspiring

Barb xx

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With bone Mets you should live to be a feisty old lady. Plan on it.

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Yeah but I had that liver met and a few pleural modules so I’m not just bone only but mostly

I’ll still be feisty though!

Barb xx

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Good to hear! Thank God for good reports!🙏🏻💕

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Do you have any side effects like pelvic pain on Faslodex

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No pain. Just a metallic taste that is subtle and odor to urine. And dry eyes for part of the cycle. Feel much better than on letrozole.

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Thx For your reply. I really enjoy reading your post! Your authentic and you also have a good sense of humor. I like that a lot!

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Forgot to say the odd taste and smell are gone within 3 days. Especially if I load myself with fluids

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Water is amazing ..... 👍

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I have stinky pee and blurry eyes on Letrozole.

Fantastic news by the way. It feels like I have received good news hearing your results.

I have some emoji stickers at work!!

Is your reflux better? Xx

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Thank you so much. I see my doc on the 11th and will have a chat about them. Blessings, Hannah

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That's wonderful news! A friend of mine from a local mbc support group who lived the longest with mbc of anybody I know personally and not online, had lung only mets. She lived for 13 years and both her onc, who was also my onc, and I thought she would have lived longer but about a year before she died her 31 year old daughter died suddenly and unexpectedly of a brain bleed. That totally devastated her and her family and she lost her spunk. Anyway, I mean this as encouragement about lung mets. I don't know if this would be helpful to you, but I went to pulmonary rehab, sort of like physical therapy, for several months, not from lung mets but for a med side effect, and it was a wonderful experience. People with all different kinds of breathing and lung issues and alot of chatting and friend making while we used exercise machines. I also lost about 15 pounds without trying, something that was a definitely plus for me!

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Thanks PJB. It is encouraging. I also know of 2 other women hitting year 13 who are still out there. And they are pre-Ibrance. I think there is nothing worse than the death of a child. I’ll look into the rehab. My breathing is pretty good but I think I could use cardiacs rehab.

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Fabulous news! 💕

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Rocks.....WHAT GREAT NEWS!!!!! 🤸‍♀️🤸‍♀️🤸‍♀️❤❤❤

It is so easy to get anxious about the tests and scans. I've been on Ibrance/Letrozole for FOUR+ YEARS. Try not to think about how long that has been! My onc called me a poster child for that drug combo. My ANC count has dipped lower lately and ONC put me on Infection precautions and said she was not terribly concerned and it was up to me if we lowered the dose. I'm feeling the fatigue bad! However, afraid to rock the boat so not opting to lower dose at this time. It's been working. Afraid to change anything for fear it might give the cancer an upper hand!

Wish you continued success with your therapy. This would indeed be a lonely road without support from this group. Unless you walk the same path, others, no matter how well intentioned or caring just cannot understand.

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Congratulations! Everyone of us that passes another scan with good results strikes another blow against cancer! I’m sorry that you are having problems keeping things down tho....please let us know the results of your ER visit. Feeling like you have glass in your esophagus sounds awful. Hoping you will feel better soon!

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Thanks for sharing the good news! Take a deep breathe and enjoy the moment. I know it’s difficult at times but it’s all we can do. I’m sure you will figure out how you can improve your eating habits. I think that’s a struggle for many of us. I’m away with my family this week and not eating too healthy so when I get back I need to get back on the healthy path.

How did your ER visit go?

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God is good. I am very happy for you. I too have lung mets and it’s so good to hear when someone is doing well.

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