Good News I am in remission! - SHARE Metastatic ...

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Good News I am in remission!

I just want to share a good news. I finally in remission since I have my recurrence in Jan 4th for breast cancer w metastatic in my spine. The last test show no progression in my spine spot and my breast is clear. I do have alot pain in my lower back and under pain under my breast bra line but everything point to my implants. The ct scan and MRI didnt show anything on my lower back. I want to get this implants out and replace for small one. Anyone have the experience to persuade the PS to remove implants before the 6 months period after radiation. My skin is clear already, but it's still a little swollen under my arm, but I alway have like that since double mastectomy. I just cant take this pain anymore and they just want me to take pain killer that dont take the pain away. Any suggestions? I have appointment on August but I dont know if she will remove them ASAP. She want it to do it on October or November, but I am fed up of this pain since 2017.

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Hi,

First of all, congratulations on your wonderful news! You must be feeling overjoyed. In terms of your pain, I would suggest you do what I do: complain and do so persistently if necessary until something is done. It is completely unacceptable to be expected to put up with so much pain for two years. I'm sure if any of your medical team was in a lot of pain they would expect a quick resolution to their problems, so I would start to document the pain, severity, and other factors and speak to your oncologist about what you expect to be done. I hope you get some answers soon and feel better.

Sophie x

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Yes I told her yesterday. Do u think my oncologist can contact my PS to request her to do something. My oncologist think my skin have heal nicely, and I will be 4 months in august when I see the PS. So I really want she can said yes to remove them on September. I just tired to feel disable to do simple things bc if i do light cleaning in my house I will pay the price at night. I just feel I am carrying two big object in my chest. I feel hopeless especially at night when I start feeling my chest so tie and my skin so stretch.

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What did your oncologist say when you told her how you were feeling? I would call her and speak to her again if she has not made a decision about what to do. Stress the importance of dealing with this as quickly as possible. September seems like a long time to wait when you are in pain. I am sorry, but who is the PS? I don't know what that is short for.

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Plastic surgeon

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Oh I see. If your oncologist has not contacted your plastic surgeon then I would ask her to do so. Sometimes you have to be really persistent with your medical team until you get what you need from them.

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Told me about it! I wanted out in January but they find out that I have cancer again so they told me that I need to wait until I finish radiation and then wait 6 months more. They tough the pain was related to my cancer in my spine but is not. I dont have pain in my upper back anymore like before. My tumour was in T6 but after radiation it got better but my lower back (the bra line is killin me!).

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It isn't fair for you to suffer like that. I had radiotherapy on my spine last August and was given such a high dose that I was in agony for five days. I was at the hospital having my zometa infusion a few days later, but I was in so much pain that even sitting down was a challenge. A doctor was called in from off the ward to examine me, but he didn't do anything! He said he could give me a muscle relaxant if the pain persisted. But I was told to take codeine for the pain. It eventually went away, but why did I have to suffer for five days? You have been dealing with pain for much longer, so I would insist that something be done quickly to help you.

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Yes I have appointment on august, but if she said no then I will look for another plastic surgeon. Its easy for them said no when they are not the one in pain.

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That's good. I hope the appointment in August goes well. I agree with you that they can easily say no when they are not the ones suffering and in pain. I'm sure if the tables were turned they would feel very differently.

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Hi thereI agree with everything Sophie says

Be pushy and demand what you want

I think we feel as if we’re being a nuisance but you’re certainly not....I can sympathise with you re pain..it wears you down and makes life miserable

All the best

Barb xx

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Thanks for your words. I am hoping they can take them out soon, bc I am over of this implants.

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Happy for good test results you got. That is wonderful. If there is a remedy for pain I would also push to have it done sooner♥️♥️♥️

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Thanks! I am happy w the News too, but I wish this pain didnt exist, so i can go back to my almost normal life after cancer.

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I am happy you have some good news after what you have been through and hope you stay stable for as long as possible until any potential cure in the future .

. I am sorry you have back pain from the ‘too large ‘ implants and hope that can be resolved , as soon as it is felt it is the right time in your ibrance cycle .

I know exactly how you feel , as I too had large breasts for my small frame all my adult life , with shoulder and bra line aches and pains too , along with shoulder indentation from my bra straps .

In late 2017 after my right mastectomy and removal of my lymph glands on the same side , I had an immediate implant ( but requested to go at least 3 cup sizes smaller on my implant side, which is now a C/D cup at max . ) I then asked my lovely lady surgeon for a reduction on my left non- affected side at a routine follow-up late 2018 and she contacted my lady onc to see when /if it would be a good time ( as on ibrance) . My onc agreed it was the best time to go for it as she could see how asymmetrical my breasts were now and also I was still getting shoulder ache from my heavy natural breast . She felt it was also good for my mental state and as I had been stable on ibrance /Letrozole for a few months and I had good bloods (WBC/ neutrophyls) , there was less risk involved to do the op then. I was lucky to have it done only a few weeks later !

Anyway, I was delighted with the result and still have a cleavage and no longer get shoulder / bra line aches and pains . I must also let you know that I did get an infection about six weeks after my op when all looked well and healing , as my internal sutures pushed out (‘spitting sutures’) and caused irritation / then resulted in an infection . I was given antibiotics again and came off ibrance for an extra week ( my op had been done at the start of my week off ) and I had antibiotics straight after the op and a few days of injections , which I did myself at home , to boost the white blood cells , to reduce the risk of post surgery infection .

I would contact your PS’s secretary and ask if you could discuss the situation with your PS , but you will also need to have discussions with your onc as to when is the best time to reduce the size of your implants . But now that you are stable , assuming your bloods are ok , it is worth asking again . Sorry you have the pain ...but to help alleviate it in the meantime , wear a good supporting full sports bra when out and about and use a small electric heated pad on the back of your chair to ease the back ache/pain , along with your painkillers . Hope you can get sorted soon ! x

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Thanks for the info. Did you have radiation too before the reconstruction? I am starting ibrance again on August bc my white cell were low, but now they are back to normal. I request the lower dose of Ibrance bc I was like zombie with 125mg and I have 4 years old daughter! I really want my breast small like 34 B my size when I was 25! I am done with big boobs. I am 36 DD and omg I cant take anymore. I have hope now since you mention u dont have pain in your bra line anymore and I am looking forward it to feel better.

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No I have never had radiation or chemo ...I went straight onto ibrance 125 mg and Letrozole shortly after diagnosis and am still on it 20 cycles later and coping ok with it so far . Wish the same for you too x

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congrats!!!

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Congratulations and I hope you feel free of pain God bless you

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Congratulations on your remission! Wonderful news!

I would keep speaking with my onc about the pain and your need to remove the implants for relief. Keep at it. You should not be in such pain if it can be resolved.

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Congratulations!! But sorry about your pain. Aa oncology nurse practitioner suggested to that I schedule an appointment with a palliative oncologist. As I understand it his role is guidance with side effects. A spoke with a Stage IVer who had very positive thoughts about his suggestions to her. Would a consultation be an option?

Becky

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I see a palliative care Dr. and she helps me with side effects and B12 shots and folic acid for energy and wheatgrass juice for help with my low platelets.

She believes in vitamins and alternative medicine.

I'm going to talk to her about COC. I think she will be receptive and maybe my insurance will cover it if she'll perscribe the drugs in that protocol.

I have found her to be very helpful through this mbc trip.

She also has a therapist on staff to try to help me deal with the craziness in my head through the stresses I'm encountering!

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congrats very happy for u its a miracle my doctor said metas never goes away...

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Remission means that you cancer has not growing or ct scan or MRI show no sign of tumour but I know that doesn't mean I am cure. I still need to take meds and still get imaging to make sure doesn't change. My cancer was spot only in 2 places thanks to God! The last 2 results show no progression or spread to another organs. My chest was clear and only have the spot in my spine and not growing.

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Oh I had a different description of the word sorry all the best to you...

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Awesome news on the remission but sorry about the pain. I get it because I just found out that the pain in my back is from cancer. I have a prescription for Norco but I really hate taking pain killers. I only take them when its really bad. I just found out that there is cancer there so I am hoping the treatments will help. Going to see my oncologist today to figure out where we go from here. I hope you feel better soon.

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I hope you feel better with treatment! Praying for you.

Love and hugs,

Marianne

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Thanks Marianne,

We have a new plan in place so hoping it will work. Fortunately I don't feel the pain all the time. So when I am sitting or walking I generally don;t feel it, it's when I have to bend over, pick something up or am laying down for awhile and getting up hurts like hell. One day at a time.

Kim

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Oh no. I'm so sorry to hear that, Kim. When I had a full bone body scan last year I was told my bones were fine. Then a PET CT scan showed two spots on my spine. The good news is that there are some effective treatments for bone metastases. I take Adcal D3 and have zometa infusions every 12 weeks. I also go to the gym every week and that has made me feel much stronger and better than I have done in years. I hope you get some answers soon from your oncologist.

Sophie x

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Thanks Sophie. I am going to go back on Ibrance and Arimidex. That is what I started on and was only on it for about 4 months before I started a trial that kicked my butt. I have been on Xeloda now for about 9 months. I too had a bone scan which showed nothing. Sheesh, what the heck!! My oncologist thinks we may have jumped into a trial to soon and didn't give Ibrance enough time. I hope it works. He seems optimistic so I am trying to stay that way. Oh and I am getting a shot of Xgeva every month now.

What is Adcal D3 - is that a supplement or a prescription.

Kim

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Hi Kim,

I hope your treatment works for you. Sorry to hear that the trial didn't work. You would think a bone scan would be pretty precise, but perhaps not!

Adcal D3 is calcium carbonate and vitamin D3 combined. It's a supplement that my oncologist recommended, so that means I get it on prescription for free. I have to pay for my other supplements, but at least I get this one for free.

Sophie ❤

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I'll check with my best friend Amazon and see if I can get it through them. :)

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Morning Kim,

You might want to check your local pharmacy too, as you can buy it easily over the counter in the UK. I'm not sure if the same is true in America, but it's worth a look. I would also check with your oncologist first to see what their views are.

Sophie ❤

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Yes the pain in the back is horrible. I did have pain from cancer too in my spine but I also have a fracture. I have surgery to repair the fracture and then I have radiation. The pain in my upper back is much less than before. But I know the pain in the lower back still there bc it radiate from my front to back.

I am sorry for the dx stay positive and make sure that you take organic baking soda to help you kill cancer too.

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The pain in my back is a pain in the butt. :) haha - I hope it gets better with the new treatment. What is the organic baking soda supposed to do and how do you take it and how much?

Kim

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Fantastic, what treatment have you had x so lovely to here good news.

Do you take any supplements, follow a diet , any tips are welcome x

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I removed my ovaries when I find out that I have cancer again. Then, I start taking letrozole, radiations, and I did take alot supplements even though my dr was not agreed. She doesn't believe in natural stuffs. I took colostrum, greens in pills, organic baking soda, avoid sugar the best I can. Specially when the letrozole raise my blood sugar. I take ashwagandha with pepper in pills. Moringa in tea and soursop tea. Also l, I drink alkaline water and I change my diet to vegetarian.

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I start Ibrance 125 mg on may but I have to stop due to my white cells low. Will start again in August 75mg dose.

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Congratulations! That is such exciting news! One of the women on this site said she used ground ginger powder to relieve her pain. Maybe it will work for you, I hope that it does!

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I drink ginger root tea every day. And I sleep nicely. Maybe help for the pain but I think since i still have these implants that's stretch my skin so much the pain does not go away

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Wow that is wonderful that you are in remission! For your pain, yeah I hope you complain until they do something about it.

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CONGRATULATIONS, N!! I had metastases to my spine as well. When I feel achy, I take 3 tabs of ibuprofen and it helps tremendously! Hope you find relief! Love and prayers!! XXOO Linda

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