April 6, 2017

Bone Cancer


Here’s a free collection of resources about Bone Cancer. Blogs, support groups, first-hand experiences and advice from people who have Bone Cancer, etc.

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Bone Cancer Blogs

Here’s a collection of Bone Cancer blogs. These blogs are written by people with Bone Cancer or about Bone Cancer (Osteosarcoma, Ewing’s Sarcoma, Chondrosarcoma, etc.)

Blog For A Cure Bone Cancer Blogs blogforacure.com 2016
Mattie Bear mattiebear.blogspot.com 2016
Becky McGuinness copingwiththebigc.blogspot.com 2016
Steven Battles Cancer stevenbattlescancer.blogspot.com 2016
Jonathan’s Got This jonathansgotthis.blogspot.com 2016
Cancer Is Not Funny cancerisnotfunny.blogspot.com 2016
Cancer Slayer Blog cancerslayerblog.com 2016
Pimp My Wig pimp-my-wig.blogspot.com 2015
Chronically Crystal chronicallycrystal.blogspot.com 2015
Kissing The Earth With My Feet kissingtheearthwithmyfeet.blogspot.com 2015
Giant Cell Tumor Blog giantcelltumorgct.blogspot.com 2014
Cindy’s Cancers cindyscancers.wordpress.com 2014
Tristan’s Bone Cancer tristansbonecancer.blogspot.com 2013
Nick Massey thelifeandtimesofnick.blogspot.com 2013
Our Amazing Rose ouramazingrose.blogspot.com 2011
Chondrosarcoma Questions chondrosarcoma.blogspot.com 2009

Bone Cancer Support Groups

Bone Cancer Support Groups On Facebook

  1. Sarcoma Alliance Group (5,321 members)
  2. DONATION FOR DEBORAH’S BONE CANCER TREATMENT – OPERATION JAMES 1:17 (3,644 members)
  3. Ewing Sarcoma Awareness Group (3,230 members)
  4. Osteosarcoma (Bone Cancer) Survivors, Family and Friends Group (2,886 members)
  5. Ewings Sarcoma Survivors Group (1,958 members)
  6. Sarcoma Support Initiative Group (1,500 members)
  7. Helping Michelle beat Chondrosarcoma cancer Group (1,099 members)
  8. Support Anirban keep fighting Bone Cancer Group (1,051 members)
  9. Chondrosarcoma Support Group Community (950 members)
  10. Ewing Sarcoma with Type One Diabetes Group (831 members)
  11. TYPES OF SARCOMA CANCERS AND IT’S FIGHTERS AND SURVIVORS Group (671 members)
  12. OsteoSarcoma Sucks Group (670 members)
  13. Justin’s fight against Ewing’s Sarcoma bone cancer Group (541 members)
  14. Natalie`s Raising Awareness for Ewing Sarcoma Scotland Group (436 members)
  15. Sarcoma Patients In The UK & Ireland Group (400 members)
  16. The Genetics of Ewing’s Sarcoma Study Group (369 members)
  17. Brittany’s Journey to beating Bone Cancer Group (362 members)
  18. Osteosarcoma Support, Discussion, and Prayer Group (333 members)
  19. MYELOFIBROSIS AWARENESS (Bone marrow/ Blood cancer) Group (333 members)
  20. Multiple Mylenoma Bone Cancer Group (263 members)
  21. Relapsed Ewing’s Sarcoma Support Group (190 members)
  22. Ewing’s Sarcoma Battle Group (169 members)
  23. Bone Cancer Awareness Group (160 members)
  24. Osteosarcoma Group (151 members)
  25. Bone metastasis (cancer spread from another part of the body to the bones) Group (151 members)
  26. Mesenchymal Chondrosarcoma Group (126 members)
  27. Ewing sarcoma cancer Group (123 members)
  28. Osteosarcoma Awareness Group (109 members)
  29. Breast and bone cancer awareness Group (101 members)
  30. HELP FIND  A CURE  For  BONE CANCER Group (97 members)
  31. Team Val bone cancer support group (95 members)
  32. Bone Cancer Awareness & Support Group (91 members)
  33. Prayers for Lawrence Todd Bone cancer awareness group (71 members)
  34. FIGHTING TO HELP ELLIE WITH BONE CANCER! <3 (64 members)
  35. BONE CANCER SUCKS! Group (59 members)
  36. Help Support Bone Cancer and Colon Cancer <3 Group (59 members)
  37. Osteosarcoma/Ewings Bone Cancer Support  Group UK (53 members)
  38. Our Fight against Ewings Sarcoma Group (52 members)
  39. SUPPORT TO FIGHT BONE CANCER!!! Group (42 members)
  40. Living with Osteosarcoma Group (37 members)
  41. Cancer and Bone Society (30 members)
  42. For Michael we support you in the fight Osteosarcoma (bone cancer) (30 members)
  43. Overcoming Osteosarcoma Group (25 members)
  44. Bone cancer survivors (Indonesia) Group (24 members)
  45. Ewings Sarcoma UK Group (22 members)
  46. Fighting bone cancer <3 Group (21 members)
  47. Haynie Spirit Bone Cancer Foundation Group (17 members)
  48. Osteosarcoma – Is it as rare as they say? Group (12 members)
  49. Group 7 – Bone Cancer Group (5 members)
  50. Find a Cure- Osteosarcoma Group (4 members)

Google Plus Bone Cancer Support Communities

  1. Sarcoma: Community for survivors, patients & more (142 members)
  2. Team Sarcoma Community (39 members)
  3. Sarcoma Foundation of America – Texas Chapter JOIN Community (25 members)

Other Bone Cancer Support Groups And Forums

  1. Cancer Survivors Network Bone Cancers Forum
  2. Patient.info Primary Bone Cancer Forum
  3. CancerCompass.com Bone Cancer Discussions
  4. eHealthForum.com Bone Cancer Forum
  5. HealthBoards.com Cancer: Bone Message Board
  6. MedHelp.org Bone Cancer Community
  7. Macmillan Bone Cancer Group
  8. Adult Bone Cancer Survivors Forum
  9. SupportGroups.com Bone Cancer Support Group
  10. DailyStrength.org bone Cancer Support Group

Browse In-Person Support Groups And Events In The United States

*Browse local in-person Bone Cancer support groups of the Sarcoma Alliance.


Bone Cancer Survey

We are surveying  people about their experiences with Bone Cancer. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name of person with Bone Cancer, Age at onset)


**Click here to share your experience with Bone Cancer**


Bone Cancer Types

Type of bone cancer (Osteosarcoma, Ewing’s Sarcoma, Chondrosarcoma):

  • Chondrosarcoma. (Byanka, 18)
  • Chondrosarcoma. (Dustin, 25)
  • Osteosarcoma. (Cari, 28)
  • Chondrosarcoma. (Tipsie, 32)
  • Chondrosarcoma. (Sharon, 40)
  • Ewing’s Sarcoma. (Mike, 42)
  • Chondrosarcoma. (Tove, 45)
  • Chondrosarcoma. (Connie, 48)
  • Chondrosarcoma. (Mark, 48)
  • Chondrosarcoma. (Roberta, 48)
  • Chondrosarcoma. (Dianne, 51)
  • Chondrosarcoma. (Nicholas, 51)
  • Chondrosarcoma. (Gabriella, 56)
  • Chondrosarcoma. (Jackie, 58)
  • Chondrosarcoma. (Gene, 67)
  • Osteosarcoma. (James, 72)

Bone Cancer Symptoms

Symptoms:

  • Uncomfortable pain on my right breast, back, and rib cage area. Any pressure, bending, or use of my arm made the pain grow and more uncomfortable. (Byanka, 18)
  • Pain, swelling, difficulty walking. (Dustin, 25)
  • Constant pain, lump. (Cari, 28)
  • Pain, weakness at sight, burning at sight, etc… (Tipsie, 32 years old)
  • Groin pain. (Sharon, 40)
  • Egg-sized lump/mass above left elbow on the underside. (Mike, 42)
  • Pain. (Tove, 45)
  • Chronic pain. (Connie, 48)
  • Slight rounding of the bone involved but nothing else. No pain, no fracture, no loss of function. (Mark, 48)
  • Leg Pain. (Roberta, 48)
  • Excruciating pain in my left groin (tumor was on my right back iliac crest).  A very strange diagnol referred pain that cannot be explained to this day. (Dianne, 51)
  • Pain, though not serious. (Nicholas, 51)
  • Swelling & Pain. (Gabriella, 56)
  • Lump in chest then became painful. (Jackie, 58)
  • Pain. (Gene, 67)
  • He had serve pain in his hip. (James, 72)

Bone Cancer Causes

Is there anything you believe contributed to your (or your loved one’s) condition? (environmental factors, experiences, genetics, etc.)

  • Experiences (sickness and stress) or genetics. (Byanka, 18)
  • Not sure. (Dustin, 25)
  • No. (Cari, 28)
  • No. (Tipsie, 32)
  • No. (Sharon, 40)
  • Genes perhaps. We tend to get anything rare in my immediate family. (Tove, 45)
  • Multiple Hereditary Exostoses / MHE. (Connie, 48)
  • Exposure to radiation during my career. (Mark, 48)
  • Genetics (osteochondroma), possible car accident triggering the change. (Dianne, 51)
  • No. (Nicholas, 51)
  • No. (Gabriella, 56)
  • No. (Jackie, 58)
  • My dad had two kinds of cancer, he had lung and bone cancer. The years of him smoking contributed to his lung cancer, but as for the bone cancer, no. (James, 72)

Bone Cancer Interesting Facts

Interesting things you’ve learned about Bone Cancer:

  • It’s painful, and makes it hard to do things. (Byanka, 18)
  • It’s rare, it doesn’t respond to chemo. (Dustin, 25)
  • Not a lot of statistics, still very unknown even within the medical field. (Cari, 28)
  • It’s hard to diagnose…there are several different types and it’s interesting that chemo and radiation don’t do anything for them… (Tipsie, 32)
  • It’s rare. (Sharon, 40)
  •  It can be immune to radiation and chemo. (Tove, 45)
  • Surprised at how many are affected by it. (Connie, 48)
  • More common that I thought, not many treatments available. (Mark, 48)
  • I read everything about it. (Roberta, 48)
  • Because it is rare, it is often misdiagnosed. I went 3 years before diagnosis. The doctors said it was anxiety and blamed me. It is difficult to get doctors to listen and to believe you and they have a hard time thinking outside the box. It is an “amputation” cancer for the most part. Some people think you are “lucky” because you have surgery instead of chemotherapy. My surgery was catastrophic but it was difficult for people to understand because it was internal. I was lucky that my tumor was “encapsulated”, and that, in 6 years, it has not metastasized to my lungs. (Dianne, 51)
  • Lots. Check chondrosarcoma on the American Cancer Society website. (Nicholas, 51)
  • Rare, misdiagnoses common. (Gabriella, 56)
  • Everything, I didn’t know anything before. (Jackie, 58)
  • I have learned that there is a cure for cancer, but they will not let it into the United States. (James, 72)

Bone Cancer Pain Relief

Experience with pain and pain relief:

  • Pain caused lack of sleep, and lack of abilities to do daily tasks. (Byanka, 18)
  • Body aches with pain pills. (Dustin, 25)
  • A lot of pain, usually constant with little to no relief. (Cari, 28)
  • I had a lot of pain and nothing would get rid of the pain…hardly ever did I get relief from the pain and the burning… (Tipsie, 32)
  • 6 years on, I am in constant but bearable pain while taking very few painkillers. (Sharon, 40)
  • The tumor pressed on the ulnar nerve (funny bone) and was quite painful for one evening. That was the only real pain I ever experienced with Ewing’s. (Mike, 42)
  • Paracetamol helped even when the pain was quite bad! (Tove, 45)
  • Have not found relief – tried PT, acupuncture, injections, massage, TENS unit, medications. (Connie, 48)
  • Pain post op treated with opioids effectively. Occasional paracetamol. Pain worse in cold or damp weather since recovery from surgery. (Mark, 48)
  • Not so much. Pain after surgery. (Roberta, 48)
  • Excruciating pain that cannot be controlled will make you contemplate suicide. Drugs tear up your system and you have to be a guinea pig until you find which drugs and what combination controls your pain. My surgeon was uninterested and unsympathetic about my post surgery pain. I found a facility (The Washington Hospital Center Cancer Institute in Washington D.C. that combined my recovery with an orthopedic oncologist and a pain management specialist) that treated me like gold. Nerve pain is the worst part of my residual fight, but every year my coping skills improved. You have to be disciplined to get off the meds and you need a lot of support. My combination of effective drugs included: dilaudid, valium, and cymbalta. Before my diagnosis, I went to several ERs and was twice hospitalized. The doctors could not find the problem and I was yelled at, dismissed, and treated very poorly. I learned that this is often because they think you are a drug seeker or an attention seeker. I did not like becoming medically dependent on drugs but I understood that the body heals better when it is not in pain. Doctors need to understand this. It took me a year and a half to wean off all the drugs, but I did it and was very proud of that achievement. (Dianne, 51)
  • Opioids and morphine derivatives work quite well but wear off as you get addicted. Laughing gas is great for acute pain but the pain managers will not let you have it often because they say it can affect your heart. (Nicholas, 51)
  • Have had good pain relief through a hospital and doctor. (Jackie, 58)
  • Got up to 7/10. Opiates helped. Pain warned of recurrence. (Gene, 67)
  • Nothing really helped my dad. (James, 72)

Bone Cancer Difficulties

Difficult aspects of living with Bone Cancer:

  • Cannot live life normally. I cannot sleep, sit or do other normal tasks. (Byanka, 18)
  • Pain, can’t walk. (Dustin, 25)
  • The physical changes are difficult. Losing mobility, losing a limb; your life changes to something it never was. (Cari, 28)
  • Not being able to use your arm, or walk without some kind of assistance and things like that…hard to get rid of the pain… (Tipsie, 32 years old)
  • My mobility is poor. I’m not able to do as much as I did before cancer. (Sharon, 40)
  • I got off easy. This one is a N/A for me. (Mike, 42)
  • After surgery of my humerus, my arm isn’t the same anymore, and with it being my dominant arm, I sometimes struggle and get frustrated. My tumor was low grade so I am one of the lucky ones, and for that I am grateful. (Tove, 45)
  • Pain and physical limitations. (Connie, 48)
  • Can’t get rid of the feeling it’s going to come back or spread. Loss of function in my hand, continuing numbness and neurological symptoms in thumb and hip. (Mark, 48)
  • I’m alone with this disease; alone with a lot of person around me. (Roberta, 48)
  • The slow recovery of dealing with the nerve pain, learning to walk again, learning to feel like I was a person of value. Realizing that after a while, peoples’ interests would wane. I was glad to get my diagnosis because I knew something was wrong but no one would listen. It was hard being dependent on others and not being able to contribute financially to my family. My medical bills are still being paid off. After surgery, your journey continues with constant CT scans, MRIs and visits for years. Most people don’t know that. I’m proud to be a survivor and that I never gave up. (Dianne, 51)
  • Hemipelvectomy left me unable to walk. Lung meds are a death sentence, but luckily clinical trials provide a stay of execution. Forced to stop work and repatriate. Now supporting family from meagre income plus savings and benefits. (Nicholas, 51)
  • Lack of cure and surgery treatment only. (Gabriella, 56)
  • Unable to do the activities I did before Bone Cancer. (Jackie, 58)
  • Can’t walk well. Fatigue. (Gene, 67)

Bone Cancer Advice

Encouragement/advice for those recently diagnosed with Bone Cancer:

  • Be patient and accept when you need help. Your friends and family will help you when you can’t help yourself. (Byanka, 18)
  • Be positive, think positive, and never give up. (Dustin, 25)
  • Second opinions are good to have. If possible, find oncologists and or surgeons that have experience with Sarcoma, which is not always easy to find. My oncologist was not a specialist but he was willing to research and work with others who were specialists. You are not alone. Seek out a support group related specifically to your diagnosis. (Cari, 28)
  • All you can do is take it day-by-day…Put your faith in the hands of the Good Lord and that He’ll guide the doctors hands in surgeries and pray for the best outcome…Keep your head up high and keep fighting the fight and never give up!!! (Tipsie, 32)
  • Stay positive. Cancer has made me stronger. I still live life it’s just a different life. (Sharon, 40)
  • It can be beat, but if you’ve got God on your side, you win no matter what. (Mike, 42)
  • Make sure you get treated in a sarcoma centre by sarcoma specialists. (Tove, 45)
  • Try to be as strong as possible everyday. (Connie, 48)
  • Don’t delay treatment, find some support, you’re not alone in this, even though it feels like you are. (Mark, 48)
  • It is a long journey. The human body is resilient and amazing. Every year, my body recovered a little bit more. You must keep the pain under control in order to heal. I have some residual nerve pain but I returned to my profession as a professional pianist 4 years after my surgery. My cancer no longer defines who I am. Your world will become very small and others may be very sympathetic and supportive but it is your journey and yours alone. Be kind to yourself. Remember that there is always hope. Keep strong in your faith. Be proud of your scars. They are proof that you were stronger than whatever tried to kill you. (Dianne, 51)
  • Stay calm. This is not as bad as, say, lung cancer, which kills rapidly and in a gruesome way. Understand that the doctors you consult are just the front end of a huge healthcare apparatus. That apparatus does not always work in your best interests. Understand the options and fight your corner. It’s your life. (Nicholas, 51)
  • Get educated. (Gabriella, 56)
  • You will get through this just take one day at a time. (Jackie, 58)
  • Hang in there. (Gene, 67)
  • I would say enjoy your life and do things that you want to and love your family. Because cancer is a very nasty disease that robs your love one of the true person that you knew and makes a them a shell of their former self. (James, 72)

Bone Cancer Diet and Exercise

Experience with diet and exercise:

  • Exercise isn’t very feasible for me since I get tired easily and my veins make my arms and legs hurt. Diet has been much easier to keep regardless of the nausea from the chemo. (Byanka, 18)
  • Exercise is difficult. If you are faced with physical limitations you have to learn new ways to be active. (Cari, 28)
  • I was put on a high protein diet before and after my surgery. (Tipsie, 32)
  • Steroids made me hungry. I was weak from chemo so I didn’t exercise. (Mike, 42)
  • Good before, but extreme fatigue since surgery has affected my ability to exercise. No changes made to diet. (Mark, 48)
  • I exercise a lot and I’m vegetarian. (Roberta, 48)
  • I eat what I want. I get moderate exercise. I don’t worry much about diet. (Dianne, 51)
  • Whatever you eat will not affect chondrosarcoma. Being sedentary will turn you into a shipping hazard unless you are careful. Personally, I find it very hard to lose weight in any case. (Nicholas, 51)
  • Normal diet. (Gabriella, 56)
  • Did as much exercise as possible throughout and had a pretty good diet already. (Jackie, 58)
  • Lost 60 lbs but gaining back. Try to walk daily. (Gene, 67)

Bone Cancer Treatments

Experience with treatments (medications, radiation, surgery, etc.):

  • It has been difficult to do chemo but it is worth getting rid of the cancer. (Byanka, 18)
  • Difficult. (Dustin, 25)
  • Chemo is horrible!! There’s a lot and it’s strong! Surgeries are tough as well. I had limb salvage and later an amputation, so both were major surgeries that changed my mobility. (Cari, 28)
  • I was lucky enough not to have to have any kind of treatments….just the surgery… (Tipsie, 32)
  • Tumor removal from the left elbow. Free floater – no bone involvement. It was all in the soft tissue. Surgical margins were < 1 mm. This was followed by 12 rounds of ABAB type therapy 3-4 weeks apart. A round consisted of Vincrystine, Cytoxin, and Red Devil (Adrimycin/Doxorubicin). B rounds were etoposide and ifosfamide. I paused halfway through those to get 25 radiation treatments (5 per week x 5 weeks). No significant nausea but I was very weak and the hair loss of course. (Mike, 42)
  • I had the tumor removed from my bone and replaced with bone cement. It’s a straightforward surgery, but I will forever be nervous that the cancer might return. (Tove, 45)
  • Had surgery to remove tumor that involved pelvis, vertebrae, and sacrum. After surgery had an aggressive infection (lost surrounding muscles), now facing advancing scoliosis and need a spinal fusion. (Connie, 48)
  • Reconstructive surgery to the thumb using donor bone from my hip. No medications/chemo/radiation required. Three monthly follow-ups in Oncology for two years, now on annual follow up with GP, referral back to Oncology if any recurrence or metastasis. (Mark, 48)
  • Good. (Roberta, 48)
  • My surgery was difficult but successful. I tried many, many different drug combinations before finding one that worked for me. For example, my body hated Lyrica but loved Cymbalta. If something isn’t working, stop and try something else. I dreaded going for my scans afterward. Scary and emotional to worry about the results. (Dianne, 51)
  • Painful long recovery (surgery). (Gabriella, 56)
  • Had surgery and then medication all went very smoothly with wonderful care. (Jackie, 58)
  • 3X surgeries. First removal of half femur. Second at Seattle Cancer Care Alliance/UW, remove hip and femur to knee. CA free for 11 months. Also 35 episodes of radiation post second surgery. No chemo. (Gene, 67)
  • The medication makes you tired. (James, 72)

Bone Cancer Recommendations

Recommendations for someone with Bone Cancer:

  • Be patient. (Byanka, 18)
  • See a specialist. (Dustin, 25)
  • Have support!! (Cari, 28)
  • Pillows are wonderful in and out of the hospital…They help with the pain some, with how you position your body…I loved the body pillows in and out of the hospital…they made a big difference. (Tipsie, 32)
  • Work the problem. Get to a major cancer center if you have to hitchhike or ride a bus. Get to Mayo, Sloan Kettering or MD Anderson. Get your opinions and go back home to get chemo and radiation unless proton therapy might be right for you. Then stay there if at all possible. Again… work the problem. (Mike, 42)
  • Get treated at a sarcoma center and don’t be afraid to ask the difficult or tough questions when or if you disagree with your doctor. (Tove, 45)
  • See a specialist that has experience with many similar cases. (Connie, 48)
  • Find support. Attend for investigations, ask questions, get your surgery in a Sarcoma Centre for specialist attention. Attend for follow up, get appropriate pain relief. Be kind to yourself. (Mark, 48)
  • Always go in, never give up. (Roberta, 48 years old)
  • Find a FB group for support. Make sure you feel respected by your doctors. Research on the internet for the best facilities. (Dianne, 51)
  • If you have time (and you usually will), do not rush to the operating theatre until other options, especially clinical trials and targeted radiation, are understood. Also, it is slow growing so there is often the chance to do the things that matter. (Nicholas, 51)
  • Get educated. (Gabriella, 56)
  • See a doctor as soon as possible and find out as much as you can about your condition and what treatments are available. (Jackie, 58)
  • Go to a sarcoma center with a good reputation. I recommend SCCA/UW. (Gene, 67)

Bone Cancer Resources

Specific resources you’ve found most helpful:

  • People who have had cancer and give me advice. (Byanka, 18)
  • None. (Dustin, 25)
  • Sarcoma related support groups. (Cari, 28)
  • Support groups and shared experiences. (Sharon, 40)
  • The Chondrosarcoma support group on Facebook. (Tove, 45)
  • Macmillan, Bone Cancer Research Trust, Chondrosarcoma support group on Facebook. (Mark, 48)
  • To believe in myself. Engaging in a lot of sports such as walking or running. Family , friends , reading a book… My Sweet dog ( the best help). (Roberta, 48)
  • FB support groups. (Dianne, 51)
  • Facebook support groups, American Cancer Society website, my family. (Nicholas, 51)
  • Internet, support group. (Gabriella, 56)
  • I found a website as I knew nothing about Chondrosarcoma and wasn’t given any information about it either. Thank goodness for the Chondrosarcoma group. (Jackie, 58)
  • SCCA/UW. (Gene,  67)