Hi sparkle sounds like you've been dropped in the brown sticky stuff. 

Have you thought cemo will work on your lungs, no problem. And 20%is better than 0. Of course its completely up to you.

Your age is a good help as well.. 

Good luck with whatever you choose........ Billy

P.s I've got prostate Cancer that's gone to lymph nodes, spine, ribs, pelvis and a lung. Was diagnosed Feb 2016, been on palliative care since. 

Hi sparkle, my son got diagnosed with osteosarcoma at 16, it was very advanced in the leg and with metastases in both lungs at the time. Yes it is a difficult cancer despite usually affecting young people, but this doesn't mean chemo doesn't work. Between chemoteraphy and four surgeries, he's still having a near perfect quality of life more than three years later. Although his condition is incurable after the cancer recurred, we wouldn't have this time without the threatment.

Feel free to ask me anything, I'd glad to share our experience if it can help. Effects of chemo on my son were two or three days of hospitalization for chemo, followed by one or two difficult days at home (some mild nausea, fatigue, not wanting to eat) and then the rest of the three weeks cycle was all very normal.

I would advice you to trust your doctors regarding your threatment, usually it must not be delayed. But yes there are some precautions to take regarding the coronavirus. 

Hi Spider-Man,

thank you for your response - so far I've not spoken to anyone else who has had the same condition as me so it's good to speak to someone who can relate.

how long did your son Undergo chemo for? and is he still doing chemo now? Also how effective was it in terms of minimising the cancer in the lungs? Is he still able to do normal day to day activities as he was before the treatment? 
 

Lastly did you have to isolate your son? Given the situation now my family would have to make a lot of changes to be extra precautious. 

the doctors are very 50/50 with the treatment due to the virus which is why they have left me to decide. If the virus wasn't around then they would have said to 100% go ahead with chemo. But obviously this is really risky now. 
 

My worry is not being able to cope with the side effects and having to make regular trips to hospital, only to be more exposed to catching the virus. 
 

once again any advice would be much appreciated. Thank you. 

Initial chemo was six cycles every three weeks, there were two different 'mixes' of chemo that alternated each other. One had worst effects than the other, inducing more nausea and vomit, however all of this occurred in the hospital and lasted three days at most. He probably has vomited at home only once or twice in all these years and never needed to come back to the hospital between scheduled threatments. Time at home was mostly good, a problem was that he would find difficult to keep a healthy weight as he didn't enjoy food, but he's always been a picky eater. After this initial treatment he was put on chemo tablets that didn't had any side effect at all, and after the recurrance he's receiveing palliative chemo to slow down the evolution of the lung tumors, this with minor side effects. This time he has also recovering from having his leg amputated, not having this sort of surgery would have probably make things even better. 

Chemo was having an effect on the lung tumors, but they didn't give much time before taking them out with surgery. The main goal of the chemo was to kill and prevent micro metastases that couldn't be seen, but the other tumors were to be taken out by surgery since they planned the threatment. There are different approaches but this is something you could ask your doctors. Even if it happens, the time that passes before recurrence and the number of tumors at recurrence is going to be influenced by chemo, and there's that 20% that gets cured. I've read a lot and as far as I know chemo is considered indispensable for osteosarcoma. 

I think that being so young you are very likely to go through chemo without strong side effects that require extra visitis to the hospital. But I would advice you to ask your doctors about how many visits you would need even if the threatment goes perfect, and if these appointments are to happen in the hospital or somewhere else that could be safer? After comming back from the hospital my son would have even three or four appointments between chemo sessions to monitor platelets and other blood counts, and prescribe injections to boost his neutrophil counts when they got low. After a few days they checked again and sometimes prescribed more injections (that we took home) and finally just before the next cycle another check to see if everything is fine. So all this time he was feeling great and doing good, but still needed constant visits to the hospital. Ask your doctors about this, and what would be the plan to minimize exposure. I'd think you can take precautions to avoid getting infected (wash hands, change clothes, use a face mask, keep your distance), but not getting complacent as time passes is always difficult. 

From what I can hear your son is a soldier, extremely brave boy for going through all of the above at a young age. You mentioned that he had to have surgery in his lungs? Was this to remove all of the tumours? And if so, how big were they? 

the possibility of surgery in lungs was discussed but doctors said it would be too risky given the current situation. In addition, even if they remove two small dots, they wouldn't be able to remove the rest, as there will most likely be ones they can't see yet. 

the oncologist said my chemo would be for 18 weeks (if all goes well). They would put me on two drugs rather than three as initially discussed, so that it would limit my hospital visits. They didn't mention anything about needing to come hospital in between cycles, but then again I didn't ask. And it could always be a possibility.

she was quite certain that chemo doesn't always have an impact on osteosarcoma. But would you say it reduced the tumours for your son? 

In regards to the recurrence - where else did it recur? Was it just in the lungs? And how long after chemo did they come back? 
 

the issue is even if you are extremely careful, when you are immune compromised, you can still catch the virus. It's a really difficult situation with risks either way. Did you also consider other alternative treatments such as herbal medicines etc? 
 

lastly if you were in my position, would you go for the chemo even with the risk of it not being effective and high chance of catching the virus? (Sorry as you can probably tell I am very indecisive). Your responses have been really informative and are helping me a lot, so thank you very much. 

Hi Sparkle, yes, my son had three surgeries in his lungs, first one lung, a few weeks later the other, and then after recurrence they did another lung. Unfortunately, after that third surgery new tumors appeared very quickly. After completing initial treatment (one surgery on each lung and the initial chemo) he remained cancer free for a little more than a year. At time of diagnosis his tumors were numerous and some of them a couple of cm large. For sure it was more than two small dots, and in his leg it was very advanced as well they amputated it two days after diagnosis.  

In the kind of lung surgery that is use for this the surgeon would use his hands to palpate the lungs looking for tumors, so they usually end up removing small tumors that couldn't be seen in imaging. You can imagine there are different approaches and lines of thought regarding cancer protocols so it's understandable that you will find differences with the treatment of my son. It makes sense to wait some time for surgeries if metastases are very small and could disappear or remain stable with chemo.

So my son went to all the initial strong chemo, then started chemo tablets to prevent recurrence. A bit after two years of diagnosis he recurred, they took it out with surgery, but very quickly recurred again in both lungs. These tumors were advancing very fast and life expectancy was a few months. They started palliative chemo which is a low dose chemo that barely affects his quality of life, and here we are 1.5 years later without any symptom (his tumors have grown but very slowly), and this is thanks to chemo. 

All recurrences have been in the lungs, it can recur in other bones or the brain but it is extremely rare. 

18 weeks is exactly six cycles at three weeks each, so we are probably seeing the same protocol which is again very standard for osteosarcoma. 

So if I were you I would go with the chemo, it works! maybe you misunderstood but the fact that long term survivability of osteosarcoma is low (your type of osteosarcoma is less aggressive than others) doesn't mean chemo is not indispensable for extending your quality and quantity of life. My son has had pretty normal life and this even having to learn to live with one leg. Chemo for a young person is not that bad, it’s older adults who have the worst side effects. Also, with the initial chemo your immune system will still be normal for much of the time, and your lungs are working at a 100% so the risk of coronavirus is not necessarily bigger that any normal young person. Not having chemo would mean letting the cancer grow freely, I wouldn't do that.

I’m glad to help!

. 

Hi Spider-Man, 

once again I would like to thank you for taking the time to share your experience, it really has been extremely helpful and insightful for me.

in regards to surgery, my oncologist discussed it as a possibility but didn't seem too keen on it to happen. I think mainly due to covid-19, they are cancelling most operations. She said I have a few white spots in the lungs, didn't mention the number but she said if you continue to look, you'd end up finding more. It's also due to this, she didn't see surgery as an option because you could remove 1 or 2, but there would still be a few left. 

From my CT scan before my operation in feb, the spot was 1.86cm and 3 weeks later grew to 2cm. So there is a growth happening there. The tumour they took out from my leg was 11cm and high grade (aggressive) all throughout. Which means there is a very strong chance of the cancer growing and coming back aggressively. I think she is hoping for the chemo to stop the growth rather than do surgery. 
 

before your son did chemo, did they discuss with you the success rate for chemotherapy on osteosarcoma? I am happy that the chemo worked for your son as it also gives me hope. After how many cycles did you start to see a difference in the cancer growth? 
 

lastly, what initial chemo drugs did your son receive? They are planning to give me two, which is Doxorubicin and Cistaplatin. Initially they were going to give me the third drug called Methotrexate, but this would mean more visits to the hospital which they are trying to limit due to the virus.  
 

I am worried that I'll go ahead with one cycle of chemo, and then face all of the side effects, only for them to cancel the rest of treatment due to the worsening situation of coronavirus. They told me I fall under intermediate priority (based on who is more benefitted by chemo). Therefore if they cancel chemo treatments for patients, they will only prioritise those who will benefit from it the most. That's why I'm hesitant to even go ahead with it in the first place.