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Introductions

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This topic contains 33 replies, has 17 voices, and was last updated by Cancer_bro cancer_bro 1 day, 20 hours ago.

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  • #10038
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new member

    @mrs_ashleywest, @cazareena, @jenntrant, and @mommashorse

    Kindly introduce yourself to other community members so that we can know each other better

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  • #10005
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new members –

    @jorj09, @rjramsay36, @jjustmejjp26, @anajanine, @mikeylikey, @movika91, @juliez, @gary, @judyloh121, @somemetalbird, @asheninaklusa, and @neenama

    Kindly introduce yourself to other community members so that we can know each other better 🙂

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  • #9938
    Kiwited
    kiwited
    Participant

    Hi I am Ted with bone marrow cancer they discovered in Sep 2017 and been put on watch & Wait and have ct scans and blood tests every 6 months I am a kiwi from New Zealand but now live in Queensland Sunshine Coast Australia.

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  • #9835
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new members –

    @becky, @andrewtompkins, @heidegabriella, @kittytaniaa, @healaugust, @noyuyaya, and @christincs.

    Kindly introduce yourself to other community members so that we can know each other better 🙂

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  • #9813
    Andrewtompkins
    andrewtompkins
    Participant

    Hi all!

    My name is Andrew, and I’m from California. I am 20 years old and three months in remission from Stage 2B Osteosarcoma in my right distal femur. I did chemotherapy, had my limb salvage surgery, and am now trying to find a new normal after this crazy year and point in my life. I’m doing well physically, but struggling a little bit emotionally. It was a life changing event and I did not have time to process it until now, which is a little overwhelming and daunting. But, I’m cancer free, so I have that to be thankful for. Always gotta look at the positives 🙂

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  • #9799
    Noyuyaya
    noyuyaya
    Participant

    Hello there! I am a pleomorphic sarcoma fighter. At first, I had GCT (giant cell tumor). It was benign but then turned out to be cancerous. I had my left knee replaced with prosthetic. So glad that I found a community here, I love to read all your brave stories❤️

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  • #9722
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new members – @ewingsarcomafyou.

    Kindly introduce yourself to other community members so that we can know each other better 🙂

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  • #9661
    Aldioabrian
    aldioabrian
    Participant

    hello, my name is Aldio. i am 20 and from Indonesia. I am is OsteoSarcoma Survivor. It was started on May and until the operation done, i must fight with this cancer. My right leg was amputated on September. Now, the stadium has gone up to level 4 and in process for chemotheraphy. Alhamdulillah, i was happy because i can continue my life again. i hope in this forum, i can have share more experience and have more friends. Best regards, Aldio.

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    • #9676
      Alvinehom
      alvinehom
      Participant

      Hi. Aldio.. Nice to know you. I’m from Jakarta. Keep up the spirit and share it to others. Cancer and amputated are not the end of life.

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  • #9635
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new members

    @quanshabrinkley, @terribeth, @mamaconorico, @aldioabrian, @estinson18, and @agarza698.

    Kindly introduce yourself to other community members so that we can know each other better 🙂

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  • #9542
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new members

    @handre, @cancerwifey, @bubbaknowsit, @samb, and @imcristal16.

    Kindly introduce yourself to other community members so that we can know each other better 🙂

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  • #9483
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new members

    @robhooper2002, @melgraham, @jean, @ksnowveley, @danni1705, @alanamariexox, @gordy, and @angieorea.

    Kindly introduce yourself to other community members so that we can know each other better 🙂

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  • #9465
    Alanamariexox
    alanamariexox
    Participant

    Hello, my name is Alana. I am the mother to my beautiful, outgoing 9-year-old daughter, Justine.

    In July 2018, I took Justine to the doctor for what we thought were growing pains in her left knee. The pain had been there for about a month, however we thought nothing of it, as she is so active, a dancer, a gymnast and a soccer player.

    She was sent for an X-ray, which showed possible osteosarcoma. This was followed by a CT scan, MRI and biopsy of her left distal femur to confirm diagnosis.

    In the middle of August, Justine had fallen on her left leg, which resulted in an ambulance trip to the emergency. Justine was in agonizing pain. We spent hours in the emergency room, waiting for X-ray results to show if she had broken her femur. At around 2AM, the emergency doctor pulled me aside, and informed me that she did not break her femur, thankfully. However, he had the results for her biopsy. With no warning and no family there with us, I was told Justine had confirmed Osteosarcoma, an aggressive form of bone cancer. We were discharged from the emergency shortly after, in shambles and with Percocets for the pain.

    Once home, Justine’s pain was not managed. I spent 48 hours pacing back and forth trying to figure out how I could help my poor baby girl, wishing and praying that I could take it all away. Finally, I received a phone call from Pediatric Oncology at the Children’s Hospital. They advised us to come in immediately. I packed our bags as quick as I could and we headed off!

    Once at the oncology unit, Justine was given a dose of morphine every hour for pain, only easing it for 20 minutes, and Ativan to calm her anxiety. Justine was on a constant high dose of morphine drip, with a bolus of morphine every hour, along with other pain meds, however nothing was working. She required a catheter because the pain was so bad, she couldn’t get out of bed. My daughter was in excruciating pain for a week before it was decided that they wean her off of the morphine and start her on methadone, along with gabapentin. THANKFULLY, this worked almost immediately, but Justine was still terrified to get out of bed in case the pain came back.

    On August 18, 2018 she was taken to the OR to have an IVAD placed and immediately was started on her first cycle of chemotherapy. About a week after starting her chemotherapy, we convinced her to get out of bed, where we had to teach her how to walk with a walker and a brace on her leg to bear weight.

    Since being home, she has started school and continues to live a normal life, outside of the many hospital and doctors visits. She is on the 6 cycle MAP, each cycle being 5 weeks long. She is scheduled to have an amputation surgery (rotationplasty), sometime in early November.

    ***AS FOR THE PAIN: Since completing her first cycle of chemotherapy, her pain is completely gone. She is weaned off of the methadone, but remains on gabapentin.

    A recent X-ray showed positive results in her femur. Justine is due to have a repeat CT Scan of her chest on Monday (to check on the multiple tiny 2mm nodules that were found in her chest), as well as a repeat MRI and bone scan and round 5 of chemo on Tuesday.

    Positive thoughts and loads of prayers have kept us sane throughout this whole process.

    I will continue to update for anyone who is interested in following Justine’s story.

    I also encourage you to send your thoughts and prayers, to not only my baby girl, but the many children faced with this disgusting disease.

    -Alana, one positive cancer mom.

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  • #9447
    MelGraham
    melgraham
    Participant

    Hi everyone glad to be here. I am 48. I found a small lump on my collar bone just before moving from UAE to Ireland in 2016. Was diagnosed with osteosarcoma, had surgery to remove (with clear margins), then 8 months of MAP chemo at St. Vincent’s hospital in Dublin. All clear 18 months now. Anyone needing support or reassurance I’m happy to, listen feel free to message me. Thanks to cancerbro for the site. Mel xo

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  • #9444
    Alvinehom
    alvinehom
    Participant

    Holla… My name is Alvin. I’m a Chondrosarcoma Survivor.
    It started at Oct 2017, sometimes I feel pain on my right ankle
    At November 2017, appeared bumps on my ankle
    At December 2017, It got worst, I can’t use shoes
    At January 2018, I did ankle rontgen and there was fleck above my calcaneus bone
    At January – February 2018, I’ve done several treatments from doctors
    At March 2018, I’ve done MRI and several blood test. And the result, lead the doctor to diagnosed Bone Tuberculosis
    At April 2018, I’ve done Debridement Sugery (the removal of damaged tissue or foreign object from a wound) and doctor took sample to biopsy
    After a week, the doctor gave the result of biopsy, it was Chondrosarcoma grade 3
    I’ve checked several doctors in Indonesia, KL, & Penang and the result still the same

    Every doctors gave me 2 solutions:
    1. Calcaneus Bone reconstruction (10-15% recurrence)
    2. Amputation (0% recurrence)

    I’ve done PET Scan, and the result was no spread of cancer cell

    And I’ve done amputation surgery on June 2018. Now I live my life with prosthetic like a normal people. I still can work, driving, goin’t to the gym. I hope later on I’ll playing basket ball again.

    Nice to know you guys…
    @alvinehom

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  • #9431
    Robhooper2002
    robhooper2002
    Participant

    Hello my name is Rob, I am the father of my beautiful 7yr old daughter Eleri.
    Eleri was diagnosed with osteosarcoma in her right femur and 6 x 5mm nodules on her chest at the end of March this year. She started the 6 x 5 week cycles of chemotherapy Cisplayin, Doxurubicin and methotrexate but after the first two drugs had a bad infection at the biopsy site and further scans showed that her tumour had doubled in size leading to emergency limb salvage surgery. The tumour and majority of femur were successfully removed leaving the growth plate of her knee and ball in the hip joint. Bone cement and metal work were put in place to keep the shape of the thigh etc. After cycle 3 we had a chest CT scan that showed a new 2cm lesion on her right lung. The oncology team placed her on 2nd line chemotherapy for 2 x 3 cycles Itoposide and Infosfomide with a 3 – 5 chance of it having a positive affect on the lesion. We had the results of a CT scan a month ago which showed the lesion had reduced in size by 2mm and that the nodules were looking to be calcifying. Eleri has had one more cycle of chemotherapy and has a scan tomorrow with results on Thursday. 🤞 for positive results so that can look at resection!!

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  • #9412
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new members

    @villagesue, @lobetto, @alvinehom, @tchase1979, @marybraniff, @moritz, @irishrose, @valnewt, @clogan, @ajhj1204, @jessicachilders, @ceegeez, @cncrsks27, @alison87, @bridget85, and @jen-eve.

    Kindly introduce yourself to other community members so that we can know each other better 🙂

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  • #9388
    Alison87
    alison87
    Participant

    Hi. I’m Alison, I’m 31 years old and just celebrated 5 years cancer free. I was diagnosed with osteosarcoma when I was 26 and had surgery to remove tumor and 5months of chemo. Unfortunately I suffered a lot of complications, including joint infection at the site of the prosthetic and prosthetic dislocation (x2). I’ve had 9 surgeries in 5 yrs and suffer from permanent femoral neuropathy. But despite all that life is pretty good! I’m working at my dream job, and had a beautiful daughter last year.

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  • #9279
    TCHASE1979
    tchase1979
    Participant

    Hi, My name is Tamar and I am 39 years old. I was diagnosed with Osteosarcoma in June 1997 the week after I graduated high school. It was found in my left shin bone. I found out about this website because I put a post up on Instagram about July being Bone Cancer Awareness month. And this gentleman invited me to the site. I was fully cured in December 2000. I was a little hesitant about joining this site because its been so long since I had to deal with cancer and everything that comes with it. What could I possibly contribute to people going through it right now. I am open to answer any questions anyone may have.

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  • #9256
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our Bone Cancer squad captain – @meredithwinn and @jboive

    Kindly, introduce yourself to other community members so that they can reach out to you when they are seeking support.

    A wonderful community is built on the pillars of amazing people like our captains who accepted our invite to volunteer and help as many fighters as possible.

    We are honored and glad that they are now a part of our community 🙂

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    • #9262
      Meredithwinn
      meredithwinn
      Participant

      Hi!

      I’m Meredith and I’m two years cancer free. At age 41, I was diagnosed in August 2016 with chondrosarcoma (a grapefruit sized tumor located on my pelvic bone and growing down into my inner thigh)

      I had a radical resection (limb salvage surgery and reconstruction with skin graft) which all allowed me to keep my leg while having four inches of my pelvic bone removed as well as 1/4 of my quad.

      I’m thankful each day for modern medicine. It was a long recovery and I’m still figuring out my “new norm”. I share bits of my story and reality over on Instagram as camerashymomma if anyone wants to reach out and say hi. It’s nice to meet you all.

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  • #9214
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new members

    @tinkychestnut, @cinni, @chordomamom, @svasky11, and @sharonlm.

    Kindly introduce yourself to other community members so that we can know each other better 🙂

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  • #8813
    Kobeawah
    kobeawah
    Participant

    Hello friends! I’m Kobeawah, 21 years of age. I was diagnosed with Osteosarcoma in my left distal femur(localized only) in May 2017. After a failed limb salvage, I opted for an above knee amputation. Glad to be on such a platform!

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  • #8811
    Wordie
    wordie
    Participant

    Hi, peeps, I’m a mum to an awesome dude called Jedd he is my son who was diagnosed with Osteosarcoma in Jan 2014 at the age of 13years old now 5 years later aged 18 still fighting this horrible disease but we are team Jedd all the way giving cancer a fight of its life looking forward to meeting people like me
    Live life
    Love lots
    Laugh plenty
    👍💛👍💛👍💛👍💛👍💛

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  • #8749
    Ewing_sarcoma_babe
    ewing_sarcoma_babe
    Participant

    This is my story. My names Lauren and I have Ewing Sarcoma. Bone and soft tissue. Metastasised to lungs. Read my story if you have the time

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  • #8744
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new community members – @kimcrisolo, @nenokinenoki, @eslancita, @meredithwinn, @ewing_sarcoma_babe, and @kobeawah.

    We kindly request all new members to post an intro so that we all can know more about you 🙂

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  • #8061
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our Bone Cancer squad captain – @thediaryofjs

    Kindly, introduce yourself to other community members so that they can reach out to you when they are seeking support.

    A wonderful community is built on the pillars of amazing people like our captains who accepted our invite to volunteer and help as many fighters as possible.

    We are honored and glad that they are now a part of our community 🙂

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    • #8092
      Thediaryofjs
      thediaryofjs
      Participant

      Hi, everyone! I was diagnosed with Ewing’s sarcoma on November 6, 2016. It was in my left breast and chest wall. I was 37 at the time. I underwent biopsies, surgeries, 9 rounds of aggressive chemo at 9 hours per day 3 days in a row per month, and have have suffered from anxiety, depression, and ptsd. I am currently 1 year and a half cancer free and 1 year chemo free. I still suffer from chemo after effects such as fatigue, headaches, forgetfulness, and anxiety. I just want to offer you all my support and love. This disease can be beat and it is not automatically a death sentence. Please feel free to contact me at anytime if you need to chat or have any questions I may be able to help with. Great to meet you all 💛🎗🌻

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      • #8093
        Cancer_bro
        cancer_bro
        Keymaster

        Thanks for sharing your journey @thediaryofjs and showing all your support for other people fighting against the same cause.

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  • #8004
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new members of Bone cancer squad –

    @thediaryofjs, @adamm, @gresaklea, @bionic_brenda, @rachelwhite, and @marrina1912.

    Kindly introduce yourselves to community members so that we can know each other in a more better way 🙂 ❤

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  • #7904
    Jboive
    jboive
    Participant

    So, yes here goes my intro!
    Got diagnosed with bone cancer (Osteosarcoma) when I was 13 years of age.
    It had progressed quite far since it took us a while before I did actually see a doctor. My main symptoms where a sore spot just behind the knee cap on my right knee and I was tired — really tired all the time.

    So, it had more or less dissolved most of the bone and the doc said I was lucky not to break it and of course it had spread into the flesh. Amputation, above the knee, was the only possible solution at the time and the doctors gave me 50/50 to survive even after amputation.

    It’s been more then 30 years now and I’m still here. =)
    Didn’t do any chemo but had Interferon injections daily for the first five years.

    As you can imagine loosing a leg, especially at this at this young age, was quite an ordeal.
    Thankfully my parents where strong and pushed me to overcome any obstacles. First of all I never stayed in a wheelchair more than a couple of days and that’s my best advice to anyone on a similar situation – get up on your leg ASAP! Don’t get stuck in a wheelchair if you can help it. If you have on healthy leg left – use it!
    I have and still are, as I will tell you more about in a bit.

    So, speaking of pushing – I rode a bicycle two weeks after I had my surgery. Naturally without having a prosthetic as it’s mostly in the way. Not only that, but I managed to crash and of course the stitches broke. The doctors didn’t quite believe me when I tried explaining what had happened…

    I also received an invite from the Swedish National Team to goto on of their tryouts as I was a pretty decent skier before the cancer. Naturally I failed badly! I barely made the lift and could only to right turns (as you normally on keep pressure on the downhill ski). This was NOT how I thought it would be and didn’t ski any more for a couple of years – until my father forced me to join them in the Swedish alps. After an hour I could ski again pretty decently and did another tryout with the Swedish National Team eventually and got accepted! Have been doing a fair bit of competitions internationally and achieved pretty decent results and have a bunch of medals in a cupboard somewhere… =)

    Had a bad motorcycle accident 15 years ago and broke my back in three places, crushed my pelvis and so on – so my pro skiing days are over as I’m a shadow of my former self – but I still love it and ski whenever I can: https://www.instagram.com/p/BhEposen0kV/?taken-by=jboive

    Anyway, back to the beginning of my “career” as an amputee:
    At 13 years of age I did not appreciate people starring at me so to try and avoid that I used a prosthetic the first couple of years. Not because I think its better, just to avoid the unwanted attention. As soon as I got home it would come of. If I had my knee left I would most likely use a prosthetic but it’s not worth it, in my opinion, if you don’t. I see in the community that a lot of people think it’s a failure if you don’t use a prosthetic and a lot of people is taking extreme measure to reach mediocre results. My advice to you if you’re struggling – don’t worry so much about it do what’s best for you. I’ve used crutches for more than 30 years and will outperform any RAK I’ve seen. Yes, you get your hands tied up slightly but there’s ways around that 9/10 times. The liberty of being able to walk for miles, hike in the hills and don’t having any issues with sockets that doesn’t fit, problems with sweat and rashes, more than makes up for it. But as always- YMMV.

    At 16 I was the first person in Sweden to take a drivers license for motorcycle with only one leg. Thankfully my late father was a bit of an inventor and help my rebuild my first two motorcycles so I could use the rear brake – but that was mainly for show and I never used it when riding. It was only there for the legal requirements. The other bikes I’ve had I haven’t bothered converting those and I’ve never had any problems because of lack of rear brakes. 😉

    My stunting days are over since my accident (witch had nothing to do with stunting/speeding BTW 😉
    I still like to ride with an active style but not so extreme like I used to:

    So, do I have any limitations? No, not really. I still like to do MTB with my kids (use SPD pedals and shoe) and I’ve tried Skydiving/Bungyjumping etc etc. The only thing I haven’t been able to do properly, yet, is windsurfing standing up and rollerblading – but I haven’t given up on that just yet.

    My best advice to anyone starting out as an amputee is:
    – Most of the limitations are in your head.
    – If your body is healthy, use it. I see far too many people getting “comfortable” in their disability and as such restricting themselves in their abilities.
    – Don’t feel as a failure if you don’t use a prosthetic.
    – Don’t use a wheelchair – ever.

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  • #7803
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s meet our Bone Cancer Squad Captain – @aiezadai

    This is an introduction thread which is meant to introduce yourself to other community members. It doesn’t matter if you are a fighter or survivor, please feel free to let us know about you.

    A wonderful community is built on the pillars of amazing people like our captains who accepted our invite to volunteer and help as many fighters as possible. We are honored and glad that they are now a part of our community 🙂

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  • #7801
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new Bone Cancer members-

    @kiyomiyo344, @ravivarma, @claire, @randal, @loganlyles, @mirella, @nicolemunoz801, @allawy, @aiezadai, @paulmakavore, and @jboive.

    Kindly introduce yourselves to community members so that we can know each other in a more better way 🙂 ❤

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  • #7650
    Cancer_bro
    cancer_bro
    Keymaster
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