Allison from New Jersey - Dx Apr 2011

[-allison-]

Things have been super crazy for me in just that past few weeks. I luckily came across this site and forum in my online travels. I just wanted to stop and introduce myself. My name is Allison, I just turned 28 in Feb of this year. I was having some pain/numbness issues with my left leg/knee. After seeing an orthopedic dr who thought my pain could've been resulting in a herniated disc, I was sent for an mri where these discovered a large mass "highly suspicious of soft tissue sarcoma" growing in my left psoas muscle. After several trips to Fox Chase in Philly, a biopsy revealed the diagnosis of ASPS on April 7th. According to a CT Scan, it hasn't metastisized to the lungs or other areas, so I am very hopeful in this regard. From meeting with different sarcoma drs, surgeons and oncologists, I'm just trying to wrap my head around as much of the facts as possible. They are starting me on Sutent, in hopes to possibly shrink the tumor for removal. Because of it's location (apparently begining to invade the spinal canal along a couple of nerves), I was already informed that after removal I'm going to be be fighting with some weakness and damage to that area. Right now I am just hoping for the best in being able to remove it. Period.

I know there isn't a whole lot of research on ASPS because of it's rarity, so I feel very blessed that I have found this community of people willing to share their stories and experiences.

[Olga]

Hi Allison,
welcome here.
I just wanted to add some comments to what Bonni said. Since there are no lung mets found, the probability of the brain mets is very low - there are only few cases known when there were brain ASPS mets without any known lung mets so although I always support the brain surveillance, it can wait for now. What is the size of the primary tumor?
We have some info about the sutent's side effects in the ‹ Systemic Treatment ‹ Anti-Angiogenic Treatments ‹ Sutent (sunitinib)
the exact link is here:
http://www.cureasps.org/forum/viewforum.php?f=52
ask people what else you need to know about its side effects (the one with the hair color is really funny) and how to deal with them, but they are a little different for everyone.
I also will relocate this topic to a personal updates area later on so you will have the personal topic there where you can add any new developments and questions in an organized systematic manner, I am trying to keep the board easy to navigate:(

[Bonni Hess]

Hello again Allison,
Olga in her great and highly respected wisdom has made a good point about being able to delay having the brain MRI immediately since you thankfully don't currently have any lung mets, but if lung mets do appear as often heartbreakingly happens with ASPS even when there are no lung mets at the time of the initial diagnosis, then I would strongly urge you to have a brain MRI. It is my greatest Hope that the Sutent followed by resection of your primary tumor will stabilize progression of your disease and prevent metastasis to other areas of your body, but you will still need to be vigilant with regular scans since ASPS is an indolent disease and mets can unfortunately appear even several years after diagnosis. I certainly don't want to upset you or frighten you, or cause you additional stress and worry, but it is vitally important that you be as knowledgeable as possible about the nature of this disease because knowledge is one of the strongest weapons that we have in this challenging battle. Take care.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[-allison-]

I know there are other scans that will be done, and I am aware of the importance of the brain scans. I have several followup appointments scheduled in the coming weeks, and I know that a lot of that will be discussed. Even though I have a diagnosis, and seem to be starting on a plan of action, it still seems like everything is whirling around me without stopping. I'm sure that won't change any time soon, but I am doing my best to catch up with it all.

Original measurements from the mri read "10.5cm in craniocaudal dimension, 6.8cm in transverse dimension, and 6.3cm in AP dimension." Also read that the "tumor extends into the left lateral spinal canal through the left L3-L4 foramen, which is obliterated by the tumor. In the spinal canal, the tumor encroaches into the left ventral and left lateral epidural space..."

I know that it's a pretty decent size mass, and the positioning is pretty bad. I'm still walking around, which is wonderful, and I have been able to manage the pain well enough to keep functioning. So that's definitely a blessing. Having a hard time keeping up with my little girl, but I plan on getting this all under control so I can make up for it all later. Just trying to stay positive for the long journey I know I have in front of me...

[Bonni Hess]

Hello again Allison,
You sound like a very strong and positive young woman. I am grateful that thus far you have been able to control the pain from your large primary tumor and that it has not been debilitating in terms of your being able to walk and remain active. Hopefully the Sutent will provide rapid and significant shrinkage of the tumor so that you can proceed with resection as soon as possible. Also, has radiosurgery been discussed or considered as a possible treatment option to try to shrink/destroy the part of the tumor that has invaded the spinal canal? Radiosurgery was seemingly successfully used to treat the L4 spinal met of Tom who is another ASPS patient on this Board, but I don't know if his met had invaded the spinal canal. My continued special thoughts and best wishes are with you, and I will be anxiously awaiting your next update which will Hopefully bring good news of a successful response to the Sutent.
With caring hugs, healing wishes, and continued Hope,
Bonni

[-allison-]

Hi all. Sorry I haven't been back on here in a while. Things have been so incredibly hectic around here, which I'm sure you are all familiar with. So, it's been about 3 weeks since i have started the Sutent, and we have had some positive results. I went for a CT Scan yesterday, and while there was no shrinkage of the main tumor (which they didn't really expect to see after only 3 weeks anyway), the tumor itself was a lot less dense. My oncologists seem very excited about this. About time we started getting some good news. I go back again in 2 weeks to check on the progress and have more labs done. As far as side effects go, I feel that I am very lucky. I haven't had any of the real major ones that I've heard about (diarrhea, nausea, etc.). *knock on wood* things will continue to go well with that. I have been a lot more tired than usual, but that's to be expected I suppose, and I've been able to do okay keeping myself moving. Only other thing that's really bugging me are the changes in my skin. My face is broken out about a hundred different ways and I can't seem to get it under control. I have tried so many different things, but it's red and bumpy and itches like crazy. Same with my scalp. Not sure if it's related to the Sutent or not, but I guess it's a small price to pay for the great benefits I seem to be receiving from the medication. My doctors seem to have my pain managed quite well with a combination of oxycontin, oxycodone and an occassional muscle relaxer. All in all I feel as though things are progressing pretty well (though not as fast as I'd like them to of course....).

Sorry again for the lack of updates. I will do my best to get on here more often and keep everyone up to date on what's been going on. I hope all is going well with everyone else, and I hope to be back with some more good news soon!! Thank you all so much for your continued support!

[Olga]

Allison - hi, I merged two of your topics in one so it will be easier for the people to follow your updates. We usually just add the new posts to the previous ones so they are all in one place...

[-allison-]

Olga, thanks. I saw that some were organized this way but wasn't sure. Thanks for keeping everything together for me!

[Amanda]

Hello Allison,
I am so happy to hear that you are doing well onthe drug and that you are able to be you and spend time with your lil girl
I have a lil boy also he is now 14 and my worrie was mainly him thru this whole hell of ASPS. He helped to cure me an i am sure your child will do the same *hugs heal* IMHO
The out of controle feeling does go away BTW and then there will be times you will even forget you are dealing with cancer unless you are in pain.
I went thru a chest surgery an they removed about four inches if my 8th rib. I know when they do your surgery it is different but close.. back is back lol
I will share some stuff i wish i knew when the times come that i hope helps you thru this whole thing... I am so happs of now there are no signes of spread!!! Lets keep it that way lol

As for the skin have they given you any thing at all to help the itching and redness yet?

[Ivan]

Allison, I hope Sutent shrinks your tumor enough for speedy removal. You should explore a few different surgeons so that when the maximum shrinkage is achieved you have a plan in place for speedy action.

If your psoas muscle hurts may I suggest trying a gentle stretch such as the following - http://www.youtube.com/watch?v=iEbvVwuBnzg It may help with the pain.

[-allison-]

I know I haven't posted anything for quite some time now, I am sorry for that. I just wanted to drop by and give a quick update as to what has been going on. About a month ago I met with Dr. vonMehren (my primary oncologist at Fox Chase), as well as the surgeon and orthopedic surgeon that will be working with me. I was told that although there wasn't yet anynsin of shrinkage in my tumor, that the mass did appear more homogeneous. They all seem very pleased with that (although the surgical team wished there had been some reduction in size). It looks like they're going to keep me on the Sutent for another two months and check the progress with a followup CT, which I have scheduled for the second week in August. If everything looks about the same they're probably going to go ahead and plan the surgery. They just would like to see the tumor shrink away from the spine. Hopefully we can accomplish that in the next month or so. Also looks like I might end up having to lose a kidney in the process, if things don't change.

It's odd, things seem to be progressing well enough, but the pain seems to be getting even worse. It was well managed for a while, but looks like a visit with the pain management team is going to be in order during my next trip up there on the 14th of this month.

I have been thinking about everyone that has been going through this, and that is what help keeps me going. Through the support of my family, and just knowing that there are so many of you that have been through this and are still dealing with it every day.... It has really helped me look forward to the future. Well wishes to all of you and your families.

[Ivan]

Well, at least it's not growing - that's a good thing. I hope it does shrink a bit to make the resection simpler, and less invasive. Good luck!

[-allison-]

Well, at least it's not growing - that's a good thing. I hope it does shrink a bit to make the resection simpler, and less invasive. Good luck!

Thank you so much Hopefully everything goes well with tomorrow's appointments!

[Johannes]

Hello Allison,

I just wanted to comment on the pain that you are feeling in your leg. My girlfriend Elisa has been on a similar drug (Cediranib) for 15 months, with initial shrinkage of the primary in the thigh and the lung metastases and stable disease since then. She felt severe pain in her thigh over the first few months of the treatment, clearly while the tumor was shrinking. I know this is only a personal observation, but perhaps pain can mean something positive in relation to primaries that are being treated with an anti-angiogenic drug. This doesn't mean that you shouldn't try to get the pain under control, but perhaps this information also helps a bit.

All the best,
Johannes

[Kathy]

Hi Allison,
It sounds like your story is similar to my husband Tom's. His started with the same feeling in his left leg. He had a large tumor in the psoas muscle. He went to Dr. Bartlett at UPMC to have it removed. You can read more about his story under Tom's story. Right now he is being followed by Dr. Harvey at Hershey. His brain is clear, his back (l4) looks like it is still responding to the radio surgery that was done, and he has one tumor in the lung that they are following and tell us is stable. We are going back down next month to discuss options.
We will keep you in our thoughts and prayers. We know how alone you can feel. We are in Central PA if you ever want to get together, not too far from Jersey!
Blessings,
Kathy