Osteosarcoma

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Hi 

New to group. My wife has just recieved diagnosis of high grade osteosarcoma. We have also been advised that she has mets on her lungs. We have 3 young children. She is about to start chemo in the next fortnight. We are both petrified. We have been advised to not expect a complete cure but that the aim is to "manage and control". We're not fully clear on what that means for her in the long term and to be honest we're too scared to ask that direct question. Macmillan nurses have been fantastic. My thoughts go out to anyone else living with this and fighting it. 

  • Hi  and a very warm welcome to the online community which I hope you'll find is both informative and supportive.

    I'm not a member of this group but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list.

    As you know the online community is divided up into different support groups so you might also like to join the carers only group which is a safe and supportive place to discuss your worries and emotions with others who have a loved one living with cancer.

    If this is something that you'd like to do, clicking on the link I've created will take you there where you can then join and start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

    It would be great if you could pop something about your wife's diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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  • Hello, so sorry to hear about your wife, you must all be so frightened right now. My son was diagnosed with osteosarcoma with metastasis in August 2021 and started chemotherapy the day after his 22nd birthday in August 2021.  We are now on the 3rd chemo treatment,  2 have been IV chemo regimes and the one he now takes is oral tablets. After the first chemo for 6 months, they gave him radiotherapy, which didn’t work, so the second IV chemo was started. My son responded well to the 2nd chemo and managed to get 12 weeks off treatment, unfortunately there was some progression in that time, so now the trial chemo has been started. 
    The treatment regimes are hard and gruelling, sorry Cry however my son is feeling stronger currently so hoping this is a good sign the treatment is helping. 

    I hope you have lots of support around you all, to help with all the everyday tasks with having a young family. You will also need really good emotional support, both of you will need that, either tCryether or separately because it can be a lonely, frightening and scary place Crysorry again. 

    Where will your wife be going for treatment? 

  • Hi JBT. Thanks for the above note and sorry for late reply. My wife is now about to start her second round of chemo (doxorubicin and cisplatin). She is being treated in Birmingham UHB. I hope your son is doing OK with his latest treatment. 

  • Hi, I hope all goes as well as it can for your wife with the chemo. Encourage her to eat little and often to keep her strength up. My son lost his appetite on that regime and lost a lot of weight as he couldn’t face food. 

    My son is struggling currently with further symptoms on his oral chemo, trying to get him through to February for progress scans but I’m worried about him and he is telling me he doesn’t feel great. 

    This journey is so hard for everyone involved, my advice is accept as much support as you can, and however you feel or anything you are thinking say it out loud to someone or message on here. 

    I’m sending you, your wife and your family positive thoughts.