Osteosarcoma Survivors

I'm sorry this group isn't very active so I think you would be better off contacting our HELPLINE on 0808 808 0000. They operate Monday to Friday 9am to 8pm on this FREEPHONE number. They should be answer your questions and  point you in the right direction for other help.

Best wishes

KateG

Thanks very much for the reply. I really appreciate it, I was delighted when I read that  you have beat cancer.

Best Wishes

Brendan

Hello Brendan,

Apologies that this is long after you asked. I have only just joined this forum - even though I was diagnosed with Osteosarcoma a little over a year ago. At first I didnt want to read anything about cancer, but as time has gone one I have changed that view.

I have been the through just what you say was due to happen to the person you care about. I had chemo (2 cycles, extended over 6 weeks), then surgery to remove the tumour (and that involved taking out a large part of my pelvis for me), and more chemo after.

I finished that whole process in January 2014, and as far as they can tell am free of disease. Surgeon was pretty confident he removed all the tumour, and the chemo seemed to be doing the job - since the tissue they removed showed 95% of tumour cells had died.

A year on, I am living proof that this fairly gruelling treatment can work. We are lucky that the NHS responds very well for cancer patients, and the Bone Cancer Networks are well set up. At the time I was starting treatment, there was a case in the news of a teenager whose father worked for White House staff in USA. I assume they had the  maximum health insurance. Despite that, they were doing fund-raisers to help fund that young persons care! I have had oodles of treatment, all without needing to pay a penny.

As for how best to help someone through it - ask them "What can I do that will help? " (Not Is there anything I can do - be more specific). I was always glad of visitors when in hospital, so if you are able to keep visiting often, then do. Just a few people seemed not to want visitors. Also, try to follow the person's lead as to whether or not they want to talk about cancer. Despite not wanting to read other people's accounts, I did want people to talk about cancer and me.

By now, much of this is becoming history for you - so if you want to give me an update please do.

Wishing you, and the person you care about, well.

Hi 2-crutches flower

I'm unsure if you are still visiting this online forum. If you are I would be so happy to hear your story as it is now.

My 60 year old husband was diagnosed with osteosarcoma at the end of April this year. It is in his iliac bone and had already gone to his lungs by time of diagnosis. 
He started chemo straight away, Doxorubicin and Cisplatin every 3 weeks. He starts his 4th cycle next Monday. From day one of chemo changes happened, mainly the excruciating pain he was in subsided to the extent that he weaned off the Targin and Oxycodone painkillers to zero pain meds. He does get pain as part of treatment but that’s from a medication administered at end of each cycle to generate new white cells. That pain lasts about a week then goes. It’s normal for him to have this as part of the chemo treatment. He has no nausea or vomiting which is great but he does get extremely tired. He’s had 4 blood transfusions since starting chemo due to low red blood cells which I assume is normal?

He had a CT scan today and the specialist will discuss the outcome of this next week when they meet to decide what happens from here. 

I truly hope you are well. Take care, TweetyMax

Hello TweetyMax,

I am glad you have posted here...and glad to hear from you, though very sorry that you and your husband find yourselves needing to be "here". I rarely look at the Forum now, but the system still sends anything directed to me on to my email.

What a difficult time for you and your husband. Lots of things are similar to my experience, though other parts are surprisingly different.

At diagnosis, my osteosarcoma was filling all of my ilium - but there was no evidence of lung disease. I had the same chemo - doxyrubicon and cisplatin - though with  different side effects. For me the nausea and vomitting was severe every time. I never knew a person could vomit so much. They tried a range of antisickness drugs and did eventually hit on a combination which gave some help, but only by about the fthird cycle. I was exhausted, perhaps partly due to the sickness. For me it was white cell counts that plummeted each time...within a few days of a cycle white cells went down and then I had various infections.....thrush in the mouth, and at one stage pneumonia. The pneumonia put me in hospital for 10 days or so, as they worked their way through different antibiotics with no effect, I seriously wondered whether I would ever leave hospital.then.

I had no side effects from that drug they give after each cycle to boost white cell production. In all the early stages I had surprisingly little pain......they kept asking and all I ever needed was a couple of paracetamol.

For me, there was surgery after 2 cycles of chemo - and they removed all of the ilium and a few bits of adjoining bone...so a large part of the left side of my pelvis is gone. The good bit is that they were confident they had got all the tumour out. After the surgery I did have pain - lots - and was on pain medication, perhaps for over a year,. I eventually got off it, and nowadays it is only ever minor.

I live in the Manchester area - had my chemo at the Christie, and my surgery in Birmingham at the Royal Orrthopeadic Hopsital.

I wonder where you are, and where is your husbands treatment happening?

I would be very happy to speak, on the phone or more on email. I dont know if this system allows me to put personal email address in (junerobson@ntlworld.com) but I will try.

I am now 8 years on, and well...no return of cancer...somewhat limited in movement as still have lots of bone missing, but I manage to do lots.

I hope the meeting next week is a positive one. DO let me know what the next step is.

Warm regards,

2-Crutches-Flower

( I need a new name, as the 2 crutches are rarely part of my life now!)

Hello 2-Crutches-Flower

Thank you so much for replying. I will most certainly email you. We live in Australia.

I will send you an email today. 

Hello I’m new to this group but have read your story with interest. 

I am a mum to a 22 year old son who was diagnosed with osteosarcoma of the right side of the pelvis and sacrum 10 weeks ago and has just started his 2nd cycle of chemo (doxorubicin and cystplatin). He is so tired all the time and has lost so much weight, previously he was so fit and active so my heart breaks not only because of this recent shocking diagnosis but also for the life my son has lost and the situation he now finds himself in. 

We had a check up today at The Christie and in the car he asked me if he was going to be ok, my heart broke again, as I don’t know, I hope with all my heart that he is. I told him with all this treatment hopefully we will see improvement but it’s a long road and we have to take one day at a time. 

 What surgery have you had and how has your recovery been and what is your mobility now like?

sorry for the long message. 

Hello  JBT

I do still seem to receive notification if someone posts to me here....and here I am 8 years on from my treatment.

What a tough time for your son and you. I was 63 when diagnosed, and so a very different stage of life. Your son is in the more "usual" category, being male and early 20s - not that this is usual for anyone. I am sure you know by now that osteosarcoma is rare at any age, and then to have it in the pelvis is far more unusual than arms or legs.

I had the same chemo - and it is very nasty. For me, I was horrendously sick each time - days and days of vomiting. And yes, wiped out by it too, though for me I never knew if that was because of all the sickness.

I had surgery that removed all of my ilium and a bit of the sacrum - all on the left side since that is where the tumour was. They successfully removed it all, and the tests on the tumour when it was removed showed 95% cell death - so confirmed that the nasty chemo was doing the job of killing those cells. My surgery happened in Birmingham...most people from the North West have surgery in Oswestry, but when I was seen there they said they  couldnt do it, so referred on to Birmingham.

For me, the surgery happened after the second cycle of chemo - so is your son due to be operated on soon? Then I had four more cycles later, once I had recovered somewhat from surgery.

It was all a long. slow process to recover - but I am fit and well 8 years on, and for someone much younger than me, it hink the prospects are much more positive. I can now walk without any crutches indoors and even short distances outside. I ride a tricycle (cant do 2 wheels when the two sides of me are so uneven) - and on that I go miles!

If your son is being seen at the Christie, then you must be somewhere around the NW. I live only 3 miles from the Christie - would be happy to meet if you feel that might be helpful.

If you want to email me direct - use junerobson@ntlworld.com.

Wishing you and your son well.

Thank you for your response. I have emailed you.