WE NEED A DIRECTION! PLEASE HELP!!!

[Alyviascure]

Hello. my name is Ryan. My daughter Alyvia, age 15, has osteosarcoma. A bone cancer. She was diagnosed march 2019. It started in her knee. She went thru the standard regiment of chemo for child hood cancer of this type and a knee replacement, here in Atlanta GA. It reoccurred in her hip and then we had a hip replacement. Then showed spots in both lungs and had surgery to remove some of the spots. After surgery we started a different type of chemo and since stopped because scans showed that the chemo was not doing anything. Doctors recommended a proton beam radiation treatment that will maybe slow the cancers progression. We just finished that treatment approx 8 weeks ago and a scan last week showed no new spots and a very small amount of anything increasing in size. We are looking for treatment suggestions weather here in the US or outside. It seems we have reached our limits here. Too many "Politics and greed". please feel free to so share any advice, experience, suggestions. PLEASE!!! thankyou...

[Fruitandnutcase]

Hello Ryan,

I’m so terribly sorry to hear about your lovely Alyviva. I’m afraid I have no knowledge that could help you. From what I’ve seen here in the U.K., parents in your situation are desperate to get proton therapy treatment for their children who are in similar circumstances and have to go abroad for it.

So it is good that you have started on it.

The only thing I know of is that Cancer Research UK in conjunction with AstraZeneca developed an online tool called a Trial Finder a couple of years ago ecmcnetwork.org.uk and it worked via a website that linked patients and their doctors to every single drug trial that was available and being carried out - I suspect it is limited to the U.K. though and again it was for drug trials not finished drugs. Perhaps there is something similar in the US.

I heard it said by one lady that even though they hadn’t found one that suited her symptoms at least she knew that they had tried absolutely everything and that there wasn’t a possible drug out there that she just didn’t know about.

Kindest wishes and love to you both and I so hope you can find what you need. x

[springcross]

Hi Ryan. I'm so sorry to hear about your daughter, cancer is a dreadful disease and particularly in one so young. I don't have any suggestions but I just wanted to wish your daughter and you well and I sincerely hope you get the help needed to beat this thing. 🙏 xx

[wellness1]

That's a beautiful picture of you and Alyvia. It's clear you are doing everything possible to support your lovely daughter. You must make a great team.

Good response from Fruitandnutcase. In the US you can search clinical trials by condition. (although you and/or your doctors may already have done so)

clinicaltrials.gov/

I'm sorry I don't have any advice or suggestions for you, but by reaching out, you never know who may come along. My very best wishes to you both. Take care.

[Met00]

So sorry to hear what you and your daughter are going through. I wonder whether you might get any suggestions if you join a cancer group within Healthunlocked. I don't think many members in this Bone Health group will have any relevant experience, as it's a group for people with osteoporosis. I do hope you can find some more treatment options.

[Alyviascure]

Would it have been possible to have typed each post on"seperate" forum? Would it matter some how if i did copy and past? It isent a lie. U wouldent figure its best too reach as many people as poss? Do you not have anything better to do?