Nina from London - diagnosed in 2013

[NinaMic]

Hello guys,

My name is Michael and I am Nina's boyfriend. Nina is now 23 years old. I have just found this forum and we would like to become active members. As for now I am still a little confused and trying to learn about how everything is structured and so on. But I thought it would be a good start to post Nina's story here.

Nina was diagnosed with ASPS in August 2013. The primary tumor was in her left thigh. Before any treatment could start we already found out that there were mets in her lungs. After that she received radio therapy in the end of 2013 and had surgery to remove the primary tumor in Feb 2014. The surgery went well and so far it looks like the leg remains clean. The mets in her lungs are growing steadily but not very fast. By now she has about 30-50 mets (we do not know for sure) with 1 which is growing fast and about 3-5 growing a little slower. The other ones remain relatively steady. That means we are currently mainly concerned with about 6 of them.

Unfortunately Nina still struggles with her leg. Even though the cancer has been removed from there, she still experiences pain regularly and it is keeping her from living a normal life. 80% of the time it is fine, but 20% or the time it is not possible to ignore it.

Apart from the actual illness, we mostly struggle with not knowing what to do about it. The frustration is big sometimes and of course we are afraid of the future. However, I have to say that so far we have been able to keep living a normal life. The few interruptions (hospital, treatment, seeing doctors and all the rest of it) are of course not pleasurable but we are dealing with it. Nina is staying positive and her attitude is what is keeping me going.

I guess before we get more involved in this forum and try to get to know you guys, I would like to ask a few questions. We are facing a big decision soon and are not sure what to do:

Nina is being treated at the Royal Marsden. We regularly see Prof Ian Judson. As far as I understand we are lucky to have him as our oncologists because he knows a great deal about this illness (or might even be THE oncologist for this)

- It has been suggested to Nina to start the clinical trial for cediranib. We are not sure whether or not to join. And even if, we are not sure if it is the right time. Nina is very concerned about the side effects. At the moment, like I said she can live a normal life and we are not sure how much that will change after starting the trial. We are going to read the experience reports one by one in the next days to see how other people have been doing. But we would like to know if it is generally recommended to start this ASAP.
- Do you guys meet in person? We would like to know if there are regular meetings or if people have gotten together through this forum. I feel like it would be great for Nina. All the cancer support groups we have been able to find do not have anybody with ASPS in it. Also there are almost no people her age in those groups.
- We are about to move to Germany and one thing we are concerned about is if she will get appropriate treatment in Germany (also if she will be able to stay in the trial if she joins in). Has anybody got any experience with ASPS in Germany?
- I understand from what I have read so far that even though this is a very bad disease, there still is hope. I understand some people got rid of it (if my understand is correct, then I wish those people all the best and that they will never hear of it again). Others who did not manage to get rid of it are able to control it (again, I hope all the best and that they can live their life with as little disruption as possible). I would like to know if I my understanding is correct.

I am sorry if I am just asking for advice at the moment. Like I said we are a bit lost right now because of the decisions we have to make soon.
We would like to grow to become part of the community and hope that we can add to it.

Have a lovely day!
Michael

[Olga]

Hi Michael,
welcome here.
To answer your Qs:
-re. cediranib trial. To decide that you have to do some work. Find out if it is open in Germany at all (the Astra Zeneca web-site or a clinical trails finder). Find out of Nina can stay on a trial in UK if she changes her country of residence (ask the nurse of the trial in UK). Find out when the trial stops the enrollment. We do not know if it is better to start this ASAP or not because we have a person with 100% complete response (all mets gone) but we have other who responded for awhile but then developed resistance and faster growth followed.
- re. meetings - ASPS is extremely rare disease and people are spread all over the world, so we do not usually meet face to face, only here on the board.
- re. faster growing mets - they can be separately cryoablated. This procedure is avail. in UK and Pf. Judson knows that. Also is avail. the special type of surgery - laser assisted resection, that allows resection of the big number of the small mets by burning them on the spot - in the way similar to what is used to remove the unwanted hair. Dr.Rolle from Germany does it, few of us traveled there to have it done by him and paid out of pocket. He is going to retire soon so this option should also be not overlooked. How soon are you moving.

[D.ap]

Michael and Nina

As Olga said welcome to the group.
I am sorry for your diagnoses. if we had been giving the choice I know NONE of us would be here. I've found the group and information to be hope inspiring and uplifting .

There are trials for cedirinib in Canada as well as in the USA and the UK
Bonni, whose daughter Brittanyis on a trial in Canada I believe.

http://www.cureasps.org/forum/viewtopic.php?f=45&t=400

The cedirinib section from the forum short cut

http://www.cureasps.org/forum/viewforum.php?f=45


I am sure she would be more than glad to visit with you and Nina when she is available.


All my love
Debbie

Our son Joshua's story in the personal section

[MartinBube]

Hello Michael

just read your post. I've been diagnosed with this a week ago. had it already removed and tomorrow I will do additional tests.

Hope Nina is doing fine.

I wanted to ask you what if you started the trial or not and what actually happened since I have a relative in the UK and I'm sending samples over there and I might even come for further treatment.

thank you
Martin

[Bonni Hess]

Dear Michael,
Welcome to the CureASPS Discussion Board and apologies for being so slow to respond to your post but I was on vacation and away from the computer and internet access. I am so sorry for your dear girlfriend Nina's ASPS diagnosis, and like everyone on this Board, deeply know and share the heartache of everything that you are both going through. My name is Bonni Hess and my now 32 year old daughter Brittany was diagnosed with ASPS thirteen and a half years ago at age 19 in July 2001. Her initial diagnosis was very similar to Nina's with the primary tumor in her left thigh and about 50 mets in her lungs at the time she was diagnosed. Immediately following diagnosis, Brittany had her primary tumor resected followed by radiation to the primary tumor site. Because there was no known effective systemic treatment for ASPS at the time Brittany was diagnosed, we monitored her disease with regular scans and she underwent surgical removal (resection), Cryoablation and Radiofrequency Ablation ( RFA), and Gamma Knife for new/growing/dangerously located mets in her lungs, liver, tibia, brain, breast, and spine, as well as two unsuccessful Clinical Trials for the first eight years of her ASPS battle until an unresectable/untreatable met was diagnosed in the head of her pancreas along with mets in her small bowel intussusception and duodenum. Because the pancreatic met was Life threatening and we had no other viable treatment options, Brittany began a systemic treatment in a Cediranib Clinical Trial in Edmonton, Alberta in April 2009. VERY thankfully, the Cediranib has thus far provided Brittany with five and a half years of disease stability and apparent disappearance of her innumerous and widely disseminated mets including the Life threatening pancreatic met. Because her very knowledgeable Clinical Trial oncologist, Dr. Michael Sawyer, feels that Brittany is now macroscopically tumor free, but unfortunately probably not microscopically tumor free, Brittany continues on the Cediranib Clinical Trial. To our and Dr. Sawyer's knowledge, Brittany is now the Cediranib patient with the longest sustained disease stability in the World as it typically does not provide as significant of a response and length of disease stability that Brittany has had thus far. The side effects of Cediranib are very difficult and debilitating but Brittany is able to tolerate them well enough to be fairly active and to Live each day with passion and purpose. However, I would personally caution you about Nina beginning Cediranib at this time as long as there are other treatment options available for her lung mets such as laser resection or Cryoablation. Brittany started Cediranib as a last resort treatment because she had no other treatment options for her rapidly progressing disease. Once you begin Cediranib it is very dangerous to discontinue it due to the documented risk of rebound and rapid disease progression when the Cediranib is discontinued. I am very familiar with Professor Judson through his treatment of a couple of other ASPS patients on this Board, as well as personal communication with him. He is, as you said, a highly respected and extremely knowledgeable/experienced Sarcoma oncologist with ASPS expertise. I strongly encourage you to discuss with him all of the expressed concerns/pros/cons about Nina's participation in a Cediranib Trial at this time before you make this critically important treatment decision.
It is extremely important that Nina receive regular and appropriate scans to monitor her disease and find any new mets at the smallest most treatable size including chest/abdominal/pelvic CT's every three to six months, a brain MRI (NOT a brain CT which is inadequate) once a year, and a full body bone scan once a year.
I Hope that you and/or Nina will actively participate on this Board as your time and situation allow because this Board is an invaluable source of international shared researched and anecdotal treatment information and strengthening support and encouragement. Shared information is truly one of our most powerful weapons in fighting this extremely rare and little known disease. Nina is very fortunate to have your dedicated care and support which is so extremely important in fighting this very challenging disease. Take care Michael, stay strong, hold tight to Hope, and keep in touch with the Board as you are able.
With special caring thoughts, healing wishes for Nina, warm friendship, and continued Hope,
Bonni