Chondrosarcoma (Bone Cancer) - our story

[Jodii]

Hi all - I'm 50 and hubby is 51 and was diagnosed with his 4th bout of chondrosarcoma (CS) last Sept, which he has had over the past 27 years. In each of the first three bouts the tumour located in his sacrum was removed via surgery. He was told that CS does not respond to Chemo or Radio therefore he has never had any of that up til now. By complete accident we discovered the latest bout of cancer last Sept when having a routine ultrasound on his liver and our gp noticed dark spots where there shouldn't have been any (not in his liver but nearby). Anyway ongoing investigations showed that 4 years after the previous surgery it was back and this time had spread to lymph nodes and both lungs extensively. The prognosis is that it is incurable and inoperable and that we will need to manage his symptoms as they arise. He may have 2 - 5 years or he may have longer - they don't know, however currently his last scan showed it is stable and slow growing. When we found out about it - hubby had no symptoms. In December and again in January this year however he has developed a pain in his left hip (apparently similar to a sciatic nerve being pinched) which we are still trying to get under control through layering of a variety of medications and a future appt with the Pain Management Specialist. Our Radiotherapist recommended that he have a six week session of Radio on the tumour in the sacrum to shrink it and reduce hubby's pain - while he is relatively symptom free and strong and healthy. So last week he started the six week radio sessions. So far so good, if we could just get the pain under control so he could sleep at night I'm sure he would be doing even better than he is. Apart from that - as we have both got roughly 10 - 15 yrs until retirement we were about to start planning for that period of our lives. Now with this diagnosis we find we are combining trips (haven't had any yet) with continuing to work full time, while fitting in treatment and trying to live life as normally as we can with the 'new normal' we have been dealt. This isn't always an easy task I'm finding.... Anyway in a nutshell that is us.

[topenddownunder]

Hi Jodii, We are sorry to hear about "Hubby" and the Horrible effect this insideous Desease is having on your lives.Our journey only travels since Mid last year,but, as you know,this can be a VERY rocky ride,but, it is good though, that through sites like this,we can share our thoughts and problems,and hopefully ease the burdon a bit,if only for a while.Cancer seems to bring a whole new set of mountains to climb, not only physical,but emotional, financial etc etc etc.BUT THEY ARE ACHIEVABLE!!We have tried a few different (NOT alternative)Medications and Herbs (always approved from the Oncology Pharmacist)and although we cant guarantee they work, I have had a total of 60% reduction in the tumor in my lung over about five months.Some of these were accully recomended from the pharmacist.We are still unsure about the cancer in my Pelvis (bone)but hope to find out more today, Say hi to "Hubby" for us, and we hope he is not going through too much pain, and we hope this journey for both of you will improve soon. Please dont hesitate to contact us if we can be of any help Greg & De

[Jodii]

Thanks so much Greg and De for your reply. Hubby's name is Erik - sorry I forget to introduce both of us sometimes!! Erik is going to see a Remedial Massage Therapist this week in an effort to assist in relieving the pain he is dealing with currently. This lady specialises in Myofascial release, craniosacral and polarity therapies - which to me sound like alternative types of treatment but apparently are not - and having discussed his situation with her extensively - she seems to think she can assist - so we are trying that as well as drugs to ease his pain. Apparently this particular bone cancer can be incredibly painful (and there aren't always explanations as to why this is so). Anyway if we can ease Eriks current pain and manage that so he can at least sleep well - then we can get through the radiotherapy and move forward. Apart from this one area of constant chronic pain - he has no other symptoms from his lungs or elsewhere. It is hard to believe to look at him at times that there is anything wrong with him. He often said when he was first diagnosed last Sept that he felt like a fraud as there didn't appear to be anything wrong with him! It sounds like you are still not sure of the type of bone cancer in the pelvis - is that correct? Are you seeing an Orthopaedic Oncologist to get that diagnosed ?? Erik saw an Orthopaedic Oncologist in Perth for the first 3 occurrences and initially last year when this 4th episode appeared. I would be really interested in hearing more about what your oncology pharmacist recommends in regard to your lung tumours though - as this is a first for us dealing with cancer in the lungs this time round. Thanks so much for your advice and support and we will talk some more... xx

[topenddownunder]

Gday Jodii & Erik.,We hope all is progressing well.Sorry I was a bit slow replying to your post,I`ve changed Chemo`s (this is the second cycle) and am waiting to see if the side effects will be the same as the first cycle.(Once the Dexmethsone wears off!!!) Anyway, my daughter has been very thorough in her research since I was diagnosed with lung and Pelvic cancer last year. Apart from supplying me with a whole new diet to abide by, (mostly which part of my old diet anyway...fresh fruit and vegies etc) De makes me smoothies with lots of goodies in them,They are filling and dont make me feel as sick after eating (Although the Tablets the Pharmacist supply...PRAMIN...and sometimes just a Ginger Tablet helps with this problem( I use 1 mg Natures own and recommend them). The other "natural" supplements are Astrogarlis (both of these were recommended by the Pharmacist) and Wheat Grass, which Rebecca has been able to find in tablet form. According to the the Pharmacist, the Astrogarlis marks or highlights the cancer cells so the Chemo has a better chance to identify them. It also helps with the immune system after chemo.The Wheat grass also helps the immune system and also helps with minerals and vitamins. We have been told from the Pharmacist not to have too much intake of anything with Anti-oxidents in them (like green tea) and careful of anything that has blood thinners in it. Always check with the Pharmacist.There are other like Barley Grass, which is good "sprinkled " on food or in a smoothie, but tastes Yuck!!! and a cool refreshing drink of "Fresh lime" (about a tablespoon..but I sqeeze them into Ice block trays and freeze them and use them that way) and the good old Apple cider vinegar, honey and warm water is also good and all are supposed to help. I have had a 60% reduction in my Lung Tumor over the past 8 months , and it looks like (from a bone scan..not a PET Scan) the cancer in my pelvis hasnt increase, so maybe some of these simple things are helping. I hope this helps and if you have any questions, please dont hesitate to contact us. All the best Greg & De

[topenddownunder]

Hi Jodi & Erik..just a short note to see how you are both coping, Hope all is well. Keep positive!!! I`m off for chemo today...all seems to be going good...CTscan will reveal progress soon.Wishing you both all the best Greg & De