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It is hard to accept the news. I am in a similar position with mets in my lungs liver and base of skull.

I was offered chemo which I refused and then I was offered radiotherapy to my head which I am going to accept. My worse symptoms are my headaches which are getting worse. I hope the radiotherapy will help the headaches and slow things down. I have living with my diagnosis for 12 years and know there is now not a lot of time left . I want the best ending I can have. My advise is to see if there are any other options for you. Chemo is not generally recommended   for my type of cancer but may be suitable for you 

best wishes xx

Thankyou for the advice, she did say I could halt chemo after 1 dose if I wanted. But I also will look for other options.

I was diagnosed during early lockdown got by with minimal symptoms and only palliative radiotherapy on sarcoma, so it seems pretty aggressive now. 

12 years is a long time to cope with it and am sure your making right choices for you. I hope it relieves the headaches at least and slows things down for you. Peace & serenity x

Thank you x

Lilly, I'd just add that you should ask about commonest side effects of the chemo. I've had a lot of different chemos, and some were harder than others - some caused a lot of nausea, some none; some made me very tired (maybe because of the anti-nausea meds I needed), some didn't so much; some dropped my blood counts pretty low, others didn't. That may make a big difference in quality of life.

Where is your sarcoma, or was it originally? Mine is osteosarcoma, spread from my left leg to my lungs.

PatriciaV

Hi

Mines lower left leg, they reduced size to alleviate pain via radiotherapy. But as ms to lungs couldn’t operate. Quality of life’s been fine only damn Covid restrictions, 

This last scan showed significant spread in last 3 months. Inc pancreas etc so chemo suggested. A lot to think about and quality of life is uppermost. I will speak to nurse and give my decision next week and hope cardio gram is ok too. 

When was your diagnosis ? X

Hi Lilly,

I was diagnosed in 2016, so have been at this a little while. I have mets to the lung too, at first they could remove them with surgery but they have grown too large and numerous now. My original site was my leg, but it has not shown back up there.

Good luck deciding on treatment! I don't have symptoms from the lung mets yet, really, so no need for palliative treatment. Just waiting now.

Patricia

Thankyou x

I think that is sensible. I do no have symptoms of pain from my lung mets I do get breathless and can’t swim or walk up hill or run with out getting breathless. But I can do all the everyday things. 

it is not easy just watching and waiting though xx

I know, about the waiting! Except, it's preferable to not having any wait time left, I guess

I do get breathless, and that is what my mind is gnawing on now. Because we can't really say why it is. I had a huge raging infection in April, including pneumonia and being put on a respirator and all sorts of bad stuff, and I was seriously deconditioned from that. I am getting better day by day. But I don't know if breathlessness now, 6 months later, is from that or from "tumor burden". The rehab doc said regardless, keep exercising, because even if it is tumors, exercising will increase the capacity of the rest of the lungs. And I guess when I really think about it, I am able to go further and for longer without getting as breathless. I need to remember that. 

But still, it's like concrete evidence of what is going on inside, you know? And it wreaks havoc with my mind. It's like someone whispering in my ear all the time "The end is coming!" I hate it.

PatriciaV

Hi Lilly, I just wanted to let you know I'm thinking of you. I think these decisions are always difficult, so take your time and do what's right for you, everyone is different! My diagnosis was in 2013 and also started on my left leg on the shin which was malignant melanoma. I'm sure we have all experienced the waiting game! Scans, then waiting for results seems to be never ending but we know when we get off this rollercoaster then things will be much worse! So Onward and Upwards! I hope your cardio tests are all good!