Hi everyone. I’m new to this group and just searching for anyone who has experience of osteosarcoma, especially when it has metastasised to the lungs.
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?
I’m reaching out for experiences from others. There’s not much information out there on this type of cancer - real person information. We live in Australia and I can’t find any chat groups which talk about osteosarcoma. It would be great to hear from anyone. Thank you
Hi TweetyMax and welcome to the Online Community but so sorry to hear about your husbands diagnosis. A extra special welcome from down under.
A cancer diagnosis in the family can be very challenging but talking with others who are walking the same type of cancer journey (my one is completely different) will help you navigate this difficult time.
The Community has many cancer specific support groups so can I recommend you join our supportive Bone cancer and Lung, secondary cancer groups as these will be good places to connect with patients and family on the same cancer treatment pathway.
To join a group just click on the link above then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens.
You can then introduce yourself by putting up a ‘New Thread’ or hit the box with the X on the top right (phones), you could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'.
When it comes to the practical challenges of supporting someone you may benefit from talking with others caring for family and friends so do check out our Carers only group where you will connect with others supporting family and friends
We also have Cancer Nurse Team in our Ask an Expert section, but do allow two working days for replies from our expert team.
To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section.
All the very best ((hugs))
Hi Tracy TweetyMax a cancer diagnosis is like a whirlwind that hits all the family. I have been on my cancer journey for over 22 years now and even although I have been at stage 4, in my type of cancer (hit my name for my story) stage 4 means that we had to fight much harder and longer to get into remission.
I say ‘we’ as I will always say that those looking on and walking beside the person with the cancer actually have a harder battle, so yes talking with others who are supporting is very important for you and my wife Fiona will totally agree with me.
Talking to people face to face can also help a lot but during these strange times it’s not that available but do check to see if you have any Local Macmillan Support in your area has opened up.
Do also check out for a local Maggie’s Centre as these folks are amazing. During lockdown a lot of their services moved onto online video support. But I see our local Maggie’s (Inverness) are starting to open up for one on one support.
In the Highlands it’s nothing for a family to do a 4hr round trip to visit our Maggie’s Centre as the support they receive is second to none.
Wishing you both all the very best ((hugs))
Thank you Mike TheHighlander. I see you as Sean Connery talking with that Scottish accent 
Yes, it has been an absolute whirlwind which has torn through our little family here. We migrated from England 18 years ago, just me, my husband and our 3 boys. We have had the best 18 years we could have had here in Australia. Absolute dream. Our boys have grown up to be fine young men. Two are now married and we have our 5th grandchild due in September so our little family has multiplied and we have each other for our strength. We are all behind my husband, all the way.
We don't have Macmillan Support in Australia. We do have Australian Cancer Support but I haven't been able to find someone in the same situation as we are with them. I have now found someone on this site though and will be communicating with that person.
And, as in the Highlands, it's nothing for a family here to do a 4 hr round trip to visit a mate and have some snags on the barby! In fact my husband's chemo is at a hospital 1 hour and 40 min drive from our home.
Before we left England 18 years ago we visited Scotland for a holiday. My son, who was 6 at the time, actually saw the Loch Ness monster!!!! It's a story we have told everyone ever since.
You take care
Tracy
Hi Tracy, yes a rather long commute to a ‘local’ Maggie’s then 
Good that you have connected with someone on the site and I do hope you will get some help and support.
Its amazing when you reflect back on life and indeed your move ‘down under’ is the ultimate move that your family have flourished, we have 4 granddaughters, one is local in the Highlands the other three are down n Surrey and due to all the restrictions we did not seen them for 9 months.
It’s great your so has seen Nessie, she is one of our local celebrities 
We are only 10min drive for Loch Ness so visit and walk there often.
I was looking back at your first post and noticed “….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”
I am making a guess that this is with getting G-CSF Injections. I was on G-CSF injections once a day for 4 months following my second Stem Cell Transplant.....
I had no real bone pain and I was told that this was down to my team prescribing Piriton or Clarityn Antihistamine as this bizarrely stopped the pain developing.
Number 2 granddaughters birthday this weekend so she is so excited to eventually be allowed to have a few of her friends round for a party.
Do take care, I do hope that you can find more connections on the community and as always I am always around to chat ((hugs))
…… and these are our four girls 
Hi again TweetyMax, a family navigating a cancer journey is hard in itself but Covid just makes it much more challenging and at times stressful.
Yes G-CSF is a general term for these injections and let’s look for things to level out and for you to get home ASAP.
From left to right…. Charlotte will be 9 in Sep, Ellie is 7 (it was her birthday and she is an only child) Madeleine is 4 and Norah 6.
The three sisters stay down Sunny Surrey abd will be up in a few weeks
My cancer journey is rather complicated, I was diagnosed back in 1999 with a rare incurable type of skin blood cancer (Cutaneous T-Cell Non Hodgkin’s Lymphoma) 1 in 140000 chance 
It took 14 years before we had to use full on treatments, it went from stage 1 up to stage 4 over the years eventually presenting on 79% of my skin, in my lymph nodes and bone marrow. Its a rather long story so if you are interested hit my community name Thehighlander and you can see my story…… but make a cup of strong coffee ((hugs))
