Allison from New Jersey - Dx Apr 2011

[-allison-]

Kathy, I do remember reading about Tom's journey with ASPS, and noticed that there were a lot of similarities with my own. Dr vonMehren (I think I read that Tom did a trial under her?) is actually my primary (med) oncologist. It's very encouraging to hear of successes in situations that are so similar to mine.

So, just a quick update on what's currently going on... I went Thursday for a bunch of followup appointments at Fox Chase and they ended up admitting me to the hospital because of some troubles I was having throughout the week. I was only kept for one night (thank goodness). During my stay, they decided that they were going to stop the Sutent, and have me start radiation treatments. I go tomorrow for a CT scan, and the radiation oncologists actually want another MRI done as well. After they map everything out, I will spend 5-6 weeks going through radiation treatments before they plan the surgery. I am going to have a fun time driving the 1-1.5 hours it takes me to get to Fox Chase every day. Hope Lodge is a great option for some nights I guess, but is difficult to be away from my daughter that long. Oh well, all for the greater good, right? Hopefully the treatments will do something to shrink away the part of the tumor that is encroaching on my spinal cord. I can't wait to get rid of this thing!

[Ryan]

Well, I'm Allison's brother, Ryan..

She hasn't posted in quite a while, and I have no way of giving quite as detailed an update as my sister herself could.. Nov 2011, I flew back to Philadelphia to be there with my mom and sister while she had her surgery to remove the main tumor.. 6" x 4" mass in her lower back

I still vividly remember not being able to handle being in the room with her after the 8 hour + surgery, even though I wanted to be there.. They took one of her major nerves with the tumor, but found it was really stuck in there - the tumor affected blood vessels and other nerves along her spine beyond what they could get out.. As a synapses since - She underwent another radiation treatment and has been on a lower dose of sutent since.. -

There has been one scare with a possible met on her lung but turned out to be nothing, otherwise she's been mostly recovering to not being able to extend her left leg / everything that goes along with having a severed femoral nerve, and dealing with a milder grade of chemo since.. Between Chemo, drugs that counteract chemo side effects, and pain killers for all the interactions with her nerves she's been hanging in there but it's precarious and day by day.. A little over a month ago she was taken off her Dilaudid pump and has been on only oral pain killers, which is an improvement so she is slowly but surely getting back to being herself..

Has anyone here had experience with Sutent / steroids and weight gain? Any tips on how to combat this?

[Bonni Hess]

Dear Ryan,
Welcome to the Board and thank you for your very thoughtful update on Allison. You sound like a very caring and devoted brother and I am so glad that Allison has your special love and support which is so very important in this difficult battle with this very challenging disease. I am grateful that Allison was able to finally have the surgery to remove her large primary spinal tumor, but am so sorry that it was not able to be completely removed because of its involvement with the spinal nerves and blood vessels. The good news is that the surgeons were able to remove the bulk of the large tumor thus reducing the impact of it on Allison's nerves and the associated pain it was causing as well as reducing her body's tumor burden. Hopefully having most of the tumor gone will make it possible for the radiation treatment and Sutent to more effective and successful in shrinking/destroying the remaining portion of the tumor which could not be resected. I am also so sorry for Allison's debilitating post-op pain which I know far too well from the severe and chronic spinal pain which Brittany has heartbreakingly suffered since her thoracic and cervical spinal tumor resection four and a half years ago. However, in addition to the nerve damage, much of Brittany's pain is the result of the surgeon having to remove a third of each of seven vertebrae in order to completely remove the tumor thus leaving her with a greatly decreased support structure for her neck. Heartbreakingly, her neurosurgeon and the pain specialists have thus far been able to prescribe anything for her that provides her with adequate pain relief, but oral Fentynol mouth swabs , Oxycodone, and medical marijuana seem to partially alleviate her pain.
Regarding your question about steroid caused weight gain, it is unfortunately one of the common side effects of steroids that only resolves once steroids are discontinued. When Brittany was on high dose Decadron to help reduce her brain met and Gamma Knife caused brain swelling and the associated severe headaches and vomiting, she heartbreakingly rapidly gained fifty pounds during a three month time period. The rapid weight gain was to her face and upper body and she was barely recognizable from the petite 117 pound young woman she had been prior to the high dose steroid treatment. Thankfully, once the brain mets were successfully removed and the brain swelling began to dissipate, Brittany was able to be gradually completely weaned off of the steroids and lost all of the steroid gained weight. Additionally, the steroids caused severe mood swings and agitation, as well as steroid induced diabetes, all of which thankfully resolved and disappeared once whe was no longer on the Decadron.
Please give dear Allison a gentle hug from me and tell her that she is being held very close in my heart and my most caring thoughts. Your update is deeply appreciated and I will look forward to yours or Allison's next update which will Hopefully bring news of radiation/Sutent caused destruction of her remaining spinal tumor and disease stability with no new tumors.
With special caring thoughts, healing wishes for Allison, and continued Hope,
Bonni Hess, mother of 30 year old Brittany diagnosed eleven years ago in July 2001

[Ivan]

Ryan, the fact that your sis hasn't had any lung mets is fairly remarkable! I am sorry to hear about the fact that she lost the function of her leg - how is she dealing with it?

[Ryan]

Bonnie.. Thank you!! Having other people in your corner helps a lot I have been dropping hints that they should relocate to here, good weather year round, I'm here, and medical marijuana is legal.. (it is not as of yet in NJ.. I think that'd be a huge help to her, I"m not a user but I agree it has it's place in medicine, not recreation) - but mom's network of friends is nowhere around here (to help with getting sis to hospital when needed/etc) and niece would have to start a new school - I've been losing that battle, haha..

The main surgeon deliberately did not tamper with the spinal column, in his words - if it had been his daughter/sister on the table (my mom and I were in the room) he couldn't in good conscience tamper further with her nerves/blood vessels - without risk of making her a parapalegic, and hoping further treatments would reduce or take out what they left behind - My sister's right leg has been a godsend

I am working with my mom to coordinate a Disney World trip with myself, our cousin (in Cali) Her, my sister and niece (back in NJ) in April so we can all get some quality time together and hopefully make the best of it all, my sis hasn't had enough time away from home - and I know her daughter would love the trip!

Ivan - I agree, and it's very good news! I'm hoping that it's more related to how slow growing her main tumor was, I'm really thinking the cancer was a big deal (obviously) over her 27 years before diagnosis, but it seems to be a really slow moving beast concentrated in one area - and I'm hoping it's been reigned in, or that it's different from previous cases.. It's really hard to know for sure with how little is actually known about ASPS, but her latest MRI's were positive - the Doctors haven't offered her a break from the sutent yet..

[D.ap]

Ryan

My name is Debbie and I wanted to introduce myself. I am Joshs mom and we are just beginning this cancer journey. We have been in a whirl wind of fights against this disease since September of 2012 and have finally arrived at a resting place to re-access where we need to go from here. We were lucky in that our primary tumor was localized in Joshuas right upper thigh and virtually contained to an area not encroaching on his muscles or bone. He has had the primary removed sucessfully and has also had 77 tumors removed from his left lung by way of laser surgery in Germany.

I was reading through you alls story and was curious how your sister, Allison is doing?

With concern , and sending hope your way

Debbie

[Guest]

Ryan

My name is Debbie and I wanted to introduce myself. I am Joshs mom and we are just beginning this cancer journey. We have been in a whirl wind of fights against this disease since September of 2012 and have finally arrived at a resting place to re-access where we need to go from here. We were lucky in that our primary tumor was localized in Joshuas right upper thigh and virtually contained to an area not encroaching on his muscles or bone. He has had the primary removed sucessfully and has also had 77 tumors removed from his left lung by way of laser surgery in Germany.

I was reading through you alls story and was curious how your sister, Allison is doing?

With concern , and sending hope your way

Debbie

Debbie,

Sorry for the late reply - I was hoping my sister would chime in.. She seems to be doing OK for the most part - The last visit to the oncologists / hospital showed no advancement or movement from it's initial location, still nothing in lungs/brain and not seeming like it will go that route, we are all hoping! She has recently gone to a 4 weeks on sutent/2 weeks off schedule to help her gain back some energy/independence, but not sure how well that's working out yet.. I'm just hoping she's off/can enjoy Disney when we go a month from now

She is using a leg brace to make up for the femoral nerve being cut, between that and a wheelchair her mobility is pretty good!

I hope all is still going as smooth as can be expected with Joshua..

-Ryan

[D.ap]

Ryan

We are so glad that Allison is home and recovering.
Remember she has had some major surgery not that long ago and is still recovering. Not only from the physical part of the surgery but also the mental part of adjusting to the partical use of her leg.
She has a great family behind her and that will, i guarantee, take her far into the future.

Please have fun in planning your trip to Disney World ( in florida?) and say I love you to each other till it hurts!

Love to you all,
Debbie

[D.ap]

PS Josh is planning a trip to Germany to eliminate the other tumors in his right lung and is feeling fine