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):

  • Ewing’s Sarcoma. (Richard, 11)
  • Ewing’s Sarcoma. (Andrew, 11)
  • Osteosarcoma. (Cassidy, 13)
  • Ewing’s Sarcoma. (Savannah, 14)
  • Osteosarcoma. (Judi, 17)
  • Chondrosarcoma. (Byanka, 18)
  • Chondrosarcoma. (Astrid, 23)
  • Chondrosarcoma. (Dustin, 25)
  • Chondrosarcoma. (Vanessa, 25)
  • Skull base Chondrosarcoma. (Ryan, 25)
  • Ewing’s Sarcoma. (Jennifer, 27)
  • Chondrosarcoma. (Erik, 27)
  • Osteosarcoma. (Chris, 27)
  • Osteosarcoma. (Cari, 28)
  • Chondrosarcoma. (Danielle, 29)
  • Ewing’s Sarcoma. (Hormozd, 31)
  • Osteosarcoma. (Francesca, 31)
  • Chrondrosarcoma. (Andrea, 36)
  • Chondrosarcoma. (Tipsie, 32)
  • Chondrosarcoma. (Sharon, 40)
  • Chondrosarcoma. (Deana, 40)
  • Chondrosarcoma. (Sandra, 40)
  • Chondrosarcoma. (Meredith, 41)
  • Ewing’s Sarcoma. (Mike, 42)
  • Chondrosarcoma. (Tove, 45)
  • Osteosarcoma. (Brian, 46)
  • Osteosarcoma. (Brian, 46)
  • Chondrosarcoma. (Debbie, 47)
  • Chondrosarcoma. (Connie, 48)
  • Chondrosarcoma. (Mark, 48)
  • Chondrosarcoma. (Roberta, 48)
  • Chondrosarcoma. (Curtis, 48)
  • Chondrosarcoma. (Dianne, 51)
  • Chondrosarcoma. (Nicholas, 51)
  • Chondrosarcoma. (Gabriella, 56)
  • Chondrosarcoma. (Jackie, 58)
  • Dedifferentiated Chondrosarcoma. (Gerry, 59)
  • Chondrosarcoma. (Terry, 63)
  • Chondrosarcoma. (Gene, 67)
  • Osteosarcoma. (James, 72)

Bone Cancer Symptoms

Symptoms:

  • Pain and a lump on arm. (Richard, 11)
  • Aching arm. (Andrew, 11)
  • Pain in leg, tumor pressing on nerve. (Cassidy, 13)
  • Untreatable pain after a cheerleading tryout injury. (Savannah, 14)
  • Pain. (Judi, 17)
  • 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)
  • Lump on sternum, but no pain. (Astrid, 23)
  • Pain, swelling, difficulty walking. (Dustin, 25)
  • Pain, Swelling (tumor grew quite fast and could be seen from the outside.) (Vanessa, 25)
  • Headache, dizziness. (Ryan, 25)
  • None the first time, pain and coughing the second time. (Jennifer, 27)
  • Ache in hip. (Erik, 27)
  • Tumor in lower right jaw, nerve pain. (Chris, 27)
  • Constant pain, lump. (Cari, 28)
  • Mass on rib. (Danielle, 29)
  • Intermittent pain and swelling in left foot and ankle every few weeks since he was 18 following sports injury. Misdiagnosed as stress fracture and cystic changes. Gradually worsened/more frequent, until biopsy confirmed cancer. (Hormozd, 31)
  • Jaw swelling and discomfort. (Francesca, 31)
  • Pain, weakness at sight, burning at sight, etc… (Tipsie, 32 years old)
  • Severe headache. (Andrea, 36)
  • Groin pain. (Sharon, 40)
  • Hip pain. Unable to put weight on leg. (Deana, 40)
  • Sciatica, asymmetry in abdomen. (Sandra, 40)
  • No pain, only limited mobility in hip. (Meredith, 41)
  • Egg-sized lump/mass above left elbow on the underside. (Mike, 42)
  • Pain. (Tove, 45)
  • Dull and sharp pain in right shin. (Brian, 46)
  • Pain and swelling of right knee. (Brian, 46)
  • Feel the tumor on my hip. Mild pain in night and morning, high white blood count for 3 years, night sweats. (Debbie, 47)
  • 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)
  • Had CT for unrelated condition and found tumor on scapula. (Curtis, 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 in Pelvic Area. (Gerry, 59)
  • Pain. (Terry, 63)
  • 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.)

  • Punched in arm at school. (Andrew, 11)
  • Possible environmental. (Judi, 17)
  • None known tested negative for li fraumeni gene. (Cassidy, 13)
  • Experiences (sickness and stress) or genetics. (Byanka, 18)
  • Being a carrier for hemophilia and Van-Willebrand-syndrome might lead to an incapsulated bruise on my chest that was not fully dissolved by my body plus living next to a little creek we later found out had carried waste disposal from a paint company up creek. We had our garden next to the creek and always ate veggies and fruit from that garden throughout my whole childhood and growing up. (Astrid, 23)
  • Not sure. (Dustin, 25)
  • Maybe genetics… There are many autoimmune diseases in my family. Possibly vitamine D deficiency. (Vanessa, 25)
  • No, I think it was an arbitrary thing. (Ryan, 25)
  • My grandfather, (dads dad) died of bone cancer. (Jennifer, 27)
  • No. (Erik, 27)
  • Possibly lifestyle, environment, diet and lack of exercise. (Chris, 27)
  • No. (Cari, 28)
  • Genetics – my grandmother had myxoid chondrosarcoma. (Danielle, 29)
  • Bad luck. It did occur at the site of a broken bone though (he broke it while playing basketball more than a decade earlier). (Hormozd, 31)
  • Possible waste incinerator near childhood home. (Francesca 31)
  • No. (Tipsie, 32)
  • No. (Andrea, 36)
  • No. (Sharon, 40)
  • Extreme stress on hip, extreme emotional stress due to major car accident my daughter was in. (Deana, 40)
  • A fall on bicycle at age 6 may have damaged the area (tumor was originally an Osteochonroma); exposure to radiation at age 8 while living in Las Vegas, NV for one year; possibly heavy microwave use. (Sandra, 41)
  • Sarcoma specialist believes it started as an Osteochondroma from a growth spurt I had during puberty, age 15, and I was “the unlucky 1%” where a benign bone tumor on a growth plate like my pelvis would continue to grow past skeletal maturity and then turn malignant. Slow growing most likely for 25 years until diagnosed, because I noticed limited mobility in my hip during yoga class. it was 10cm in size at surgery. (Meredith, 41)
  • Genes perhaps. We tend to get anything rare in my immediate family. (Tove, 45)
  • Had tibia pin placed for skeletal traction of pelvic dx at age 22. (Brian, 46)
  • Metal in body from 1990. (Brian, 46)
  • Multiple Hereditary Exostoses / MHE. (Connie, 48)
  • Exposure to radiation during my career. (Mark, 48)
  • Don’t know. (Curtis, 48)
  • Genetics (osteochondroma), possible car accident triggering the change. (Dianne, 51)
  • No. (Nicholas, 51)
  • No. (Gabriella, 56)
  • No. (Jackie, 58)
  • No. (Gerry, 59)
  • 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:

  • That children’s cancer only gets 4 percent funding. Most doctors are not looking for cancer when diagnosing children’s cancer, which can lead to months of delays for treatment. (Richard, 11)
  • It’s aggressive and destroys not just your body but your life. (Andrew, 11)
  • It is curable. (Judi, 17)
  • It’s painful, and makes it hard to do things. (Byanka, 18)
  • It is rare and you hardly see another patient in person. (Astrid, 23)
  • It’s rare, it doesn’t respond to chemo. (Dustin, 25)
  • It’s different than other cancers. (Vanessa, 25)
  • The treatment is interesting. Different radiation types, chemo, etc. (Ryan, 25)
  • It keeps coming back! (Erik, 27)
  • Very common in young adults. (Chris, 27)
  • Not a lot of statistics, still very unknown even within the medical field. (Cari, 28)
  • Everything. Molecular pathways, drugs, trials. How no patient responds the sane way. Even in one person’s body the tumors respond to treatment differently. (Hormozd, 31)
  • The type I had in the place I had it is really rare. (Francesca, 31)
  • 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)
  • The only option is drastic amputation. (Deana, 40)
  •  Mine was not treatable except by surgical removal. (Sandra, 40)
  • Chondrosarcomas are so rare most Dr’s might have never seen a case during their practice. go to a sarcoma specialist! (Meredith, 41)
  • It can be immune to radiation and chemo. (Tove, 45)
  • Early detection is paramount. (Brian, 46)
  • Usually not curable. Others don’t have as bad as a response to the chemo as Brian. (Brian, 46)
  • When you don’t look sick people think it’s nothing. (Debbie, 47)
  • 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)
  • Rare, resistant to chemo and radiation, must be monitored for recurrence. (Curtis, 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)
  • It doesn’t respond to chemo or radiation. (Terry, 63)
  • 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:

  • Opiates helped. (Richard, 11)
  • Pain so bad that you are constantly trying to get relief , absolutely takes over your life, heating up heat packs, constant drugs to help and then constipation from the drugs, wrecks your quality of life. (Andrew, 11)
  • Mild occasional nerve pain and some neuropathy many years after treatment no pain medicine used to treat pain currently. (Cassidy, 13)
  • Pain was in top of right femur but would radiate to knee, shins and ankle. Heating pads & Tylenol codeine helped in the beginning then it was unbearable. (Savannah, 14)
  • Pain caused lack of sleep, and lack of abilities to do daily tasks. (Byanka, 18)
  • Pain relief after surgery was not completely possible. Pain remains especially when you act over your new limits you needed to adapt to after surgery. You learn to live with it. Now late side-effects kicked in from surgery and metal reconstruction. A nerve in my back got squeezed and so now I have chronic pain in my pinky and my ring finger. (Astrid, 23)
  • Body aches with pain pills. (Dustin, 25)
  • Cannabis really helps! (Vanessa, 25)
  • Once the headaches subsided from de-bulking the tumor, the pain was negligible. (Ryan, 25)
  • I’ve been taking Oxycodone to control my pain. (Jennifer, 27)
  • Interesting! Fentanyl I overdosed on. Dr. prescribed too high dose! Tramadol made me stutter. (Erik, 27)
  • Pain relief has been good. (Chris, 27)
  • A lot of pain, usually constant with little to no relief. (Cari, 28)
  • Narcotics and Tylenol. (Hormozd, 31)
  • Only needed pretty low level stuff and was fine. (Francesca, 31)
  • 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)
  • Pain is severe, allergies to pain killers. (Deana, 40)
  • Has been considerable. After cancer surgery and resultant asymmetry & limp, my spinal discs began disintegrating. Gabapentin helps a lot. (Sandra, 40)
  • Sensitivity to pain medication. Cannabis oil is working since I can’t handle the opiates and nerve pain medication they prescribed. (Meredith, 41)
  • 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)
  • Severe mucocitis. Used glutamine during and after chemo to help health mouth soars etc. prior splenectomy at age 22 made chemo side effects worse. (Brian, 46)
  • Ended up on large dose MS Contin with dilaudid for breakthrough pain Chronic constipation pain. (Brian, 46)
  • Minimal pain. Use cymbalta for nerve and bone pain after bone resection. (Debbie, 47)
  • 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)
  • Thankful for good pain drugs! Learn to deal with aches. (Curtis, 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)
  • Pain became very severe , unable to bear weight on affected pelvis.Only relief came from ,100mg morphine patch, 300mg Pregabalin and regular 20mg OxyNorm for break through pain, plus Paracetamol every 6 hours. (Gerry, 59)
  • Once the tumor was removed I have not had significant pain. (Terry, 63)
  • 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:

  • Reoccurrence is high, difficulty with replacing or regrowing bone takes a long time and a lot of therapy. (Richard, 11)
  • Everything, pain, living in fear. (Andrew, 11)
  • Fear of recurrence. Chemo brain from etoposide effects. (Cassidy, 13)
  • Pain & inability to put pressure on the leg. Treatment away from home since there isn’t a sarcoma specialist nearby. (Savannah, 14)
  • Uncertainties. (Judi, 17)
  • Cannot live life normally. I cannot sleep, sit or do other normal tasks. (Byanka, 18)
  • You never really feel healed. It kind of stays with you and we know now about late recurrences and mets. (Astrid, 23)
  • Pain, can’t walk. (Dustin, 25)
  • Chondrosarcomas doesn’t respond to chemo or radiation. So I “just” had surgery. A lot of people think “Oh she doesn’t have cancer she’s still got all her hair” “It can’t be that bad” (Vanessa, 25)
  • I’ve been fortunate that it hasn’t affected my day to day life. I feel barometric pressure changes in my skull, but that’s it. (Ryan, 25)
  • Financial impact of not being able to work while going through treatment. (Jennifer, 27)
  • Uncertainty and pain. (Erik, 27)
  • Uncertainty. (Chris, 27)
  • The physical changes are difficult. Losing mobility, losing a limb; your life changes to something it never was. (Cari, 28)
  • Worrying about it coming back after removal. (Danielle, 29)
  • Interferes with daily life, sets back your life, the fear, rough and inadequate treatments. (Hormozd, 31)
  • Uncertainty, worrying, feeling everyone else is getting on with life while your stuck having treatment. (Francesca, 31)
  • 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)
  • Pain, adjusting to wheel chair. (Deana, 40)
  •  I have a relaxed attitude about it, but one thing would be that people do not understand what you are dealing with and expect that if you LOOK healthy, you should be able to do everything a healthy person can do. But it saps your strength and energy. Pain is also a constant reminder. (Sandra, 40)
  • The worry and anxiety of reoccurrence. Daily struggles with the “new norm” and challenges of physical therapy after a nine hour limb salvaging surgery. Getting back into a normal life without it feeling like cancer is looming in the shadows. (Meredith, 41)
  • 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)
  • Fatigue. Trying to do chemo and PT at same time. No one to help. Few people understand what you’re going through. Not enough research being done on cures. Needed to meet survivors for encouragement. (Brian, 46)
  • Pain, slow walking, using cane, and falling down. Unable to do things like golf and Disney World. (Brian, 46)
  • Difficult in walking, balance issues. (Debbie, 47)
  • 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)
  • Learning to live with new a normal. Losing body parts and function and anxiety! (Curtis, 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)
  • I had a complete Hemicolectomy. Used crutches for mobility and had restricted mobility. Constant awareness of recurrence/metastases.
  • Losing range of motion. (Terry, 63)
  • Can’t walk well. Fatigue. (Gene, 67)

Bone Cancer Advice

Encouragement/advice for those recently diagnosed with Bone Cancer:

  • One can get through this journey and come out the other side! A lot of amazing people you meet along the journey. (Richard, 11)
  • Some people get over it and it never returns. (Andrew, 11)
  • It seems like they have made great improvements in survival rates. Cassidy has been cancer free for two years again. Many people go on to live very normal lives. (Cassidy, 13)
  • Seek a Sarcoma specialist. (Savannah, 14)
  • Be patient and accept when you need help. Your friends and family will help you when you can’t help yourself. (Byanka, 18)
  • Find a facility and doctor that specializes in cases like yours. (Judi, 17)
  • Take this seriously, watch yourself and be your own advocate. Go to experts for treatment and if you feel like it, get a second or third opinion. Have check-ups afterwards for many many years. Watch for late side-effects and try to keep your body in balance. (Astrid, 23)
  • Be positive, think positive, and never give up. (Dustin, 25)
  • Go to a sarcoma specialist and join our awesome support facebook group! Inform yourself as best as possible and ask a lot of questions. (Vanessa, 25)
  • There are so many people that you can reach out to for help, don’t be afraid to ask. It can feel lonely, but you’re not alone. Interview your doctors as well, remember you have choices. (Ryan, 25)
  • Statistics are just that, statistics. Stay positive and believe that you will add on to the survival rates. (Jennifer, 27)
  • Stay positive, you can overcome it if you believe you can and it can make you a stronger person. (Chris, 27)
  • 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)
  • Utilize online support groups. There is someone out there who has been through the same or a similar experience who can help guide you. (Danielle, 29)
  • Get a second opinion, see a sarcoma specialist. (Hormozd, 31)
  • You will look back and think that was huge but I am so strong. Make sure you know exactly what your treatment is and are aware of all aspects of it, This can be a life saver. (Francesca, 31)
  • 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)
  • Be positive, this isn’t the end. Fight and don’t stop. (Deana, 40)
  • Keep living! Don’t fret and worry about it, just do everything you are supposed to do and leave the results to God. Our lives are in His hands, so trust Him. (Sandra, 40)
  • Lean on friends and family. Find a support group (it might have to be online) and/or a therapist. (Meredith, 41)
  • 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)
  • Forget about privacy laws and take the help and advice offered to you by others. Find a way to keep hydrated and increased calories. (Brian, 46)
  • Go on line. Find support group. Find a cancer center with Doctors experienced with Osteosarcoma rehab. (Brian, 46)
  • 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)
  • Be thankful for everyday. Everyday is a blessing, some days are better than others. Learn to lean on your Faith, The Lord, family and friends. There is hope and you can overcome. Also seek the support and advice of a support group. You can learn a lot of good information from people who have already been in the battle. Learn the good and the bad, ask questions and prepare yourself. It is a marathon and not a sprint. (Curtis, 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)
  • More people survive, treatment has advanced considerable in the last few years. The suffering will pass and you will get your life back. I recovered in a few months and went back to work a year after diagnosis. I live a full and active life. I’m acutely appreciative of each day. (Gerry, 59)
  • Get to a Sarcoma Center. (Terry, 63)
  • 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:

  • When you feel sick going through chemo get up and walk the halls of the hospital you will feel better. (Richard, 11)
  • Eat whatever you want, exercise if you can. (Andrew, 11)
  • Limited exercise due to location. Just don’t want to eat much. (Savannah, 14)
  • Both matter a great deal. (Judi, 17)
  • 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)
  • Look at what is possible in exercise, but do not overdo it. Listen to your body and its pain. It is giving you a message. Live a healthy diet, but do not forbid yourself everything. A diet will not impress the tumor, it will just help you to be in better shape for treatments and scans. (Astrid, 23)
  • Low/Slow carb works good for me. (Vanessa, 25)
  • If nothing else, diet and exercise will improve your attitude. For me, I paid close attention to what I ate, and tried to exercise when I could. (Ryan, 25)
  • I walk my dog to helps me get some light exercise. I drink ionized water and take cumin. I read that both stop the growth of cancer cells and kill them. (Jennifer, 27)
  • Changed from a meat-eating diet to a vegan diet. (Chris, 27)
  • Exercise is difficult. If you are faced with physical limitations you have to learn new ways to be active. (Cari, 28)
  • Pilates is a great way to rebuild muscle in a low-impact way. (Danielle, 29)
  • Do what you need to survive treatment. (Hormozd, 31)
  • Major appetite loss whilst receiving chemo and weight loss. (Francesca, 31)
  • I was put on a high protein diet before and after my surgery. (Tipsie, 32)
  • Yoga, omitted soda. (Deana, 40)
  • I took all the antioxidant vitamins for some years—as long a I could afford them. I try to keep moving a lot because it helps alleviate pain. (Sandra, 40)
  • Before surgery I swam and did yoga and rock climbed, kayaked, sailed. I hope to get back to all these things, but I am still requiring a cane to walk with balance. (Meredith, 41)
  • Steroids made me hungry. I was weak from chemo so I didn’t exercise. (Mike, 42)
  • Get a feeding tube placed before chemo and use it to keep your calories up. (Brian, 46)
  • Rehab from surgery delayed from chemo so little exercise and adjust diet due to constipation. (Brian, 46)
  • 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)
  • I always regularly exercised. I still swim and walk. (Gerry, 59)
  • Eat healthy and exercise as much as you are able. (Terry, 63)
  • Lost 60 lbs but gaining back. Try to walk daily. (Gene, 67)

Bone Cancer Treatments

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

  • 17 surgeries, chemo, radiation and a stem cell transplant. 3.5 years no evidence of disease! (Richard, 11)
  • Chemo is terrible, no trouble with radiation, medicines causing constipation are so hard. (Andrew, 11)
  • First time around did treatment with cisplatin, doxirubicin and methotrexate. Second time etoposide and ifosfomide. Full surgical resection with removal of right proximal fibula at 13. Right thorocotomy with removal of right middle lobe and full surgical resection of all rumors in lungs. (Cassidy, 13)
  • Surgery removed the tumor. Chemical took it down to size for removal and chemotherapy follow up has kept it in remission. (Judi 17)
  • It has been difficult to do chemo but it is worth getting rid of the cancer. (Byanka, 18)
  • Surgery was very severe and life altering. No chemo or radiation possible for me with conventional Chondrosarcoma. (Astrid, 23)
  • Difficult. (Dustin, 25)
  • I had a right side craniotomy to remove the bulk of the tumor, then another to repair the resultant CSF leak. This was done at the Barrow Neuro Clinic in Phoenix. I had proton radiation at Mass General under Dr. Leibsch. (Ryan, 25)
  • The first time I did chemo and surgery. The second time I am doing radiation then chemo. (Jennifer, 27)
  • 5 cycles of chemotherapy, 2 surgeries, declined radiation. (Chris, 27)
  • 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)
  • Surgery only. Some minor, but permanent pain and partial numbness. (Danielle, 29)
  • 7 chemo regimens/trials, radiations and surgery. It wasn’t enough. (Hormozd, 31)
  • Difficult surgery to remove tumor on jaw skin graft etc. Was expected to lose eye but didn’t. 13 years of scars are unnoticeable to the extent I have difficulty seeing them. (Francesca, 31)
  • I was lucky enough not to have to have any kind of treatments….just the surgery… (Tipsie, 32)
  • Proton beam therapy saved my life. (Andrea, 36)
  • Chemo that was unsuccessful, awaiting radiation. (Deana, 40)
  • I only had surgery and had good luck with that. It caused other problems, but at least I still have my life! (Sandra, 41)
  • Internal Hemipelvectomy, radical resection of pelvis (removing about 4 inches of pelvic bone) skin graft with thigh muscle taken from my quad and abdominal reconstruction with porcine (bio not synthetic) to prevent need for hernia surgery in coming years. (Meredith, 41)
  • 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)
  • Find and orthopedic oncologist with lots of experience with limb salvage surgery. (Brian, 46)
  • Internal partial hemipelvectomy. (Debbie, 47)
  • 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)
  • I had a complete scapulectomy. The report states that the scapula, tumor and surrounding muscles including the rotator cuff and the supporting structures of the shoulder where removed. Very thankful my doctor was aggressive in removing the tumor with clear margins. I did however lose function of my dominant arm. Lots of therapy and follow up scans and Praise God, 8 months out and still cancer free. Still need several years of continued scans in case of recurrence. (Curtis, 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)
  • Radical surgery saved my life. Chemo had no impact, even after 6 cycles of severe treatment. Only HD pain meds. (Gerry, 59)
  • Surgery to remove CS, physical therapy, needed another surgery due to frozen shoulder. (Terry, 63)
  • 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:

  • Don’t give up! Pray a lot! (Richard, 11)
  • Enjoy life. (Andrew, 11)
  • Best hospital and doctor you can find. (Judi, 17)
  • Be patient. (Byanka, 18)
  • Get expert help right away. Don’t let anyone touch the tumor other than a sarcoma expert. Be patient during recovery. It will take a whole lot longer than you might think. And your body needs that time to heal. (Astrid, 23)
  • See a specialist. (Dustin, 25)
  • Research as much as you can. Educate yourself about the options and meet your doctors. Stay positive and manage your own treatment. (Ryan, 25)
  • Do your own research, be proactive, ask questions, and get second to third opinions. (Jennifer, 27)
  • Get second opinions. (Erik, 27)
  • Do what you feel is right for you, do your own research as well. (Chris, 27)
  • Have support!! (Cari, 28)
  • Get multiple opinions. (Danielle, 29)
  • Stay hopeful, but don’t be naive. Get a second (or third or fifth) opinion. Plan ahead for worst case so you have a backup plan. (Hormozd, 31)
  • Never give up. Get help, talk about it. Remember you can get through the treatment and life will be the same again. (Francesca, 31)
  • 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)
  • Be aggressive but research all options. (Deana, 40)
  • Stay positive, take antioxidants, try as many pain relieving methods as you can before resorting to pain medications. Put your hope & trust in God. Keep living! (Sandra, 40)
  • Find a sarcoma specialist. find a support group. (Meredith, 41)
  • 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)
  • Be open to support groups and never turn away visitors. (Brian, 46)
  • Push yourself in physical therapy after, because the saying “use it or lose it here” happens. (Debbie, 47)
  • 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)
  • Learn as much as possible, the good and the bad. Pray you get a doctor that you believe in and get a plan. Be thankful for everyday, especially the good ones. (Curtis, 48)
  • 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)
  • Be very proactive. Misdiagnosis is common. If possible get treatment at a sarcoma center. Read up, get knowledge. Rapid treatment is critical.If amputation is recommended accept it don’t delay. This is a dangerous illnesses. (Gerry, 59)
  • Get to a Sarcoma specialist or someplace that knows about your particular type. (Terry, 63)
  • 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:

  • The hospitals social workers, they have all the resources. (Richard, 11)
  • Your doctor. (Andrew, 11)
  • CURE, American Cancer Society. (Judi, 17)
  • People who have had cancer and give me advice. (Byanka, 18)
  • Chondrosarcoma support group on Facebook and the Liddy Shriver Webpage. (Astrid, 23)
  • None. (Dustin, 25)
  • Facebook Support group, Medical studies. (Vanessa, 25)
  • The Chondrosarcoma Facebook group. (Ryan, 25)
  • Facebook groups, Books, Church Groups. (Jennifer, 27)
  • http://nutritionfacts.org/. (Chris, 27)
  • Sarcoma related support groups. (Cari, 28)
  • Chondrosarcoma Facebook group. (Danielle, 29)
  • Relapse group, ACOR. (Hormozd, 31)
  • Internet. (Francesca, 31)
  • Support groups and shared experiences. (Sharon, 40)
  • Support group online, sarcoma center at ku. (Deana, 40)
  • I Love the Chondrosarcoma support group on Facebook! (Sandra, 40)
  • The online Chondrosarcoma support group had lots of info, trying to research a rare bone cancer online reveals very little helpful knowledge. (Meredith, 41)
  • The Chondrosarcoma support group on Facebook. (Tove, 45)
  • Ask the dietician for glutamine in the hospital and by lots of glutasolve before starting chemo. Don’t be afraid to ask for home healthcare. (Brian, 46)
  • 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)
  • My local doctors wanted nothing to do with my tumor, but referred me to Vanderbilt University Medical Center. My Orthopedic Oncologist Dr Ginger Holt was an amazing resource. She spent time with me and my wife and answered any questions that we had. We thank God for her and her staff. Also the Chondrosarcoma Support Group on facebook has been a very good source of information. (Curtis, 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)
  • The web, support groups. (Gerry, 59)
  • Liddy Shriver Foundation, Facebook chondrosarcoma group. (Terry, 63)
  • SCCA/UW. (Gene,  67)