Shelby Hollar from USA Dx 2009

[Tshollar289]

I signed up on here 4 years ago for my daughter. She has been fighting with ASPS for 4 years know. Her name is Shelby Hollar. We have been traveling to Houston the past four years trying one clinical trial after another. They would work for awhile then stop. Bonne Hess has been following us on caring bridge and if u read her post about scans then U know the last trail was going very well for 20mths. Then the unthinkable happened, out of no where ,four 1 cenameter mets on her brain. She had the gamma knife treatment four weeks ago. Not sure if it worked or not, still to much swelling due to the treatment. She's not having any more headache so where hopefully. Not too happy with the doctors outlook for Shelby. He thinks she only has one to two years left. If anyone has any ideas let me know. For everyone out there please get full scans.
Thanks Tim

[Olga]

Hi Tim, welcome to the board. I remember Bonni posted about your daughter having received this dreadful news while on a clinical trial about the 4 brain mets found at once, but I do not remember what was the trial for? I will open the new topic with your daughter name in the Personal Stories and Updates and move this discussion to there - you can keep her second name off the board if you want to, I can remove what you posted just let me know. We are a very close community here and will do anything what we can to share/find/suggest to ask re. treatments/clinical trials or just living with ASPS.
Regarding the prognosis/life expectancy. It is hard to say how endangered her life is at the moment as I do not know what is the ASPS status of your daughter - metastases/affected organs/number/size - besides of the brain. Is she off systemic treatment now - was taken off that trial? Was she having a response on that trial? Sometimes when the patient is taken off the drug, there might be a progression and another drug of the same class might be useful if there was a response before, or there are local treatments like surgeries or ablation that might be used to remove the metastases.
About the brain mets - we have seen a great success stories here about sub-centimeter brain mets treated by the Gamma Knife - they were completely treated and the necrotic tissue slowly dissolved as the time went. Overall her brain mets were found at the good treatable size, and the number is manageable too. As I understand she is on the steroids now so the plan for now is to get off them in a due time safely as there are very significant side effects form them as well - but they are needed for now. My son Ivan just had a brain surgery a month ago for his sub-centimeter brain met and he was off steroids in few days after, but again he only had one met. He is doing very well now (at the gym at the moment).

[D.ap]

Hi Tim and Shelby
My name is Debbie and my son Josh who is 32 was dx sept 2012
His primary was in his right upper thigh and was successfully removed
However it was discovered that he had ASPS in his lungs by way of a CT SCAN

and a biopsy. He has had his left lung treated by laser removal and hopes to get his right lung treated soon
How old is Shelby and does she have any remaining tumors ?

Don't let the doctor discourage you You need to stay on top of the scans
And continue to educate yourselves about this disease
Together we will get through this .

Nice to meet you both


Debbie

[Bonni Hess]

Dear Tim,
I am sorry to be slow in responding to your entry but I have been away from the computer for the past week. I am grateful that you followed my advice to visit this Web site and to participate on the Discussion Board. As you can see from the responses that you have already received to your post there is important shared information and strengthening support available from other ASPS Community members who share this difficult ASPS journey. Shelby, you, and your family are not alone in this difficult battle, and the shared researched and anecdotal treatment information available on this Board is one of the strongest weapons that we have to fight this extremely rare and very challenging disease. I Hope that Shelby's post Gamma Knife brain swelling is dissipating and that her symptoms are resolving and disappearing so that she can be gradually successfully weaned off of the steroids, and also so an accurate determination of the effectiveness of the Gamma Knife can be made. I Hope too that you will continue to actively participate on the Board. I will be anxiously awaiting your next update when your time and the situation allow. Take care Tim, give Shelby a special hug from me, and keep in touch as you are able.
With deepest caring, healing wishes for Shelby, and continued Hope,
Bonni

[D.ap]

Tim and Shelby

How are you both doing?
Has Shelby been able to get off the steriods yet?
When time permits would you be able to give us an update on the status of Shelbys treatment?

Love to you both

Mike and Debbie, Joshua's dad and mom

[Amanda]

Hi Tim,
I hope she is feeling better! Please, give her a hug from me!

[Tshollar289]

Thanks to all
I'm sorry for such a delay in updating Shelby condition. She had the gamma knife done in June and it so far looks good. Her last scan showed her tumors where dead. While all this was going on she has had several new growths. She has several in her lungs one grew 3mm. All of them are smaller than a cm. The one she had removed back in 09 in her lower back has came back, and put her in the hospital for a week, trying to control the pain. She has been receiving Radiation for the past two weeks, with one more week to go. Her back pain has gotten better, she has been off steroids for the past week. In the mean time she started having headaches again last week. they done a CT scan and found small tumor in the back of her skull. We spoke with the doctors today and have decide to treat it with the gamma knife. This will be done next week after she complete the radiation on her back. Her last MRI also showed she has two more tumors on her upper spine. They don't seem to be causing any pain or problems so the doctors wont to leave them alone. She goes Saturday for a MRI of the spine to make sure everything is OK.
It has been one thing after another. She is getting tired of being in pain all the time, and has a hard time walking. The tumor in her lower back is touching some nerves causing her to have a had time moving her right leg. Doctor say after her radiation she should start to get some of the feeling back. Thank all of you for your concern and prayers.

Tim Hollar

[Amanda]

Please, tell Shelby i send her hugs and love!

[D.ap]

Thanks to all
I'm sorry for such a delay in updating Shelby condition. She had the gamma knife done in June and it so far looks good. Her last scan showed her tumors where dead. While all this was going on she has had several new growths. She has several in her lungs one grew 3mm. All of them are smaller than a cm. The one she had removed back in 09 in her lower back has came back, and put her in the hospital for a week, trying to control the pain. She has been receiving Radiation for the past two weeks, with one more week to go. Her back pain has gotten better, she has been off steroids for the past week. In the mean time she started having headaches again last week. they done a CT scan and found small tumor in the back of her skull. We spoke with the doctors today and have decide to treat it with the gamma knife. This will be done next week after she complete the radiation on her back. Her last MRI also showed she has two more tumors on her upper spine. They don't seem to be causing any pain or problems so the doctors wont to leave them alone. She goes Saturday for a MRI of the spine to make sure everything is OK.
It has been one thing after another. She is getting tired of being in pain all the time, and has a hard time walking. The tumor in her lower back is touching some nerves causing her to have a had time moving her right leg. Doctor say after her radiation she should start to get some of the feeling back. Thank all of you for your concern and prayers.

Tim Hollar

Tim and Shelby and family

Please. No need for apologizes. We all know that this is an incrediablely hard time and you would update us when you were able.
I hope this day finds Shelby pain free.
I am not following your story on face book so maybe you could tell us what the next plan is for the spine after radiation? That is where it began, right ?

Write when it is possible for you.
All of us are here to listen and just maybe to be able to give some advice. So many of us don't volunteer advice because we maybe feel like we don't have anything to offer..but contrary to our feelings, we may touch someone who needs to hear what we have to say. We are all at times thankful,scared, angry or lost .When we do get brave and do come forward with advice, we may find that we have
given that someone hope or support when they are feeling lost.
On that note I wish you good night

Debbie and family

[Tshollar289]

Shelby is back in the hospital, due to dehydration and nausea. She went in on Thursday and hope to come home Saturday. She will get a MRI of spine on Saturday as well. She gets her last radiation treatment on Monday, and they will give us the results then. She meets with her oncologist on Friday. Will post more at the end of the week.

Tim Hollar

[D.ap]

Tim and Shelby
We are so sorry to hear of the dehydration and nausea
Hope today brings better things
With hopes of a good scan!
Sincerely
Debbie and family

[Bonni Hess]

Dear Tim,
I am so deeply sorry and saddened by all that dear Shelby, you, and your family are going through with the heartbreaking increasing challenges and progression of Shelby's disease. I Hope that Shelby's dehydration has been resolved and her nausea alleviated with IV re-hydration, and that she is now back Home resting comfortably. I Hope too that her spinal MRI showed that her radiation (is she receiving standard radiation or SBRT radiotherapy?) is working to shrink and destroy the reoccurrence of her lumbar spinal tumor. I am very concerned and perplexed about the doctors not wanting to treat the two recently diagnosed tumors on her upper spine because "They don't seem to be causing any pain or problems so the doctors want to leave them alone." DO NOT WAIT UNTIL THE TUMORS BECOME SYMPTOMATIC!!!!! Once the tumors become symptomatic they may not be able to be successfully resected or treated and could pose a risk of paralysis or death!!!!! Tumors need to be removed or treated at the smallest possible size, especially spinal and brain mets. Is Shelby still scheduled to have her Gamma Knife this coming week to shrink and destroy her newly diagnosed brain met? I know that she, you, and your family must feel very frightened, overwhelmed, and discouraged by the aggressive disease progression and new tumors, but try to stay strong and focussed on addressing and treating the most critically located tumors, and once they are successfully removed/treated you can move on to Shelby starting a systemic treatment like possibly Cediranib or Cabozantinib to try to stabilize the progression of her disease and the development of any new tumors. Please give Shelby a gentle hug from me, and know that she and all of your family are held very close in my heart and most caring thoughts. Take care Tim and keep in touch with the Board as you are able. I will be anxiously awaiting your next update.
With deepest caring, healing wishes for Shelby, and continued Hope,
Bonni

[Tshollar289]

Bonni thanks for your response, she has two more tumors, one in her neck muscle and the other in her upper back muscle.They did not check her lower back this time. She will be getting all scans on Monday the 14th.She will be getting the Gama knife on her skull tumor on Tuesday. the treatment she been getting in her back is the SBRT radiotherapy. They do x-ray each Monday to check the alignment.She is feeling better, pain is under control again and she able to keep everything down. We hope she can come home on Tuesday. We meet with her oncologist on Friday.So well see what he has in mind. We may end up going back to TX'.

[Bonni Hess]

Hello again Tim and thank you for your thoughtful response and the additional shared information. I am glad to hear that Shelby is receiving SBRT radiotherapy for her lumbar spinal tumor as it is a treatment which has shown success for another patient on this Board with a lumbar spinal tumor. I am glad too and very grateful that Shelby is feeling better and that her spinal pain is under control which is an encouraging sign that the SBRT is working to shrink the spinal tumor which will Hopefully be confirmed by her scans on the 14th. Do you know the sizes of the two tumors in her neck muscle and her upper back muscle? I again strongly urge you to request/demand that the doctors address and schedule treatment for the two new back area tumors as soon as possible. Brittany's large thoracic/cervical spinal tumor was initially also in her upper back muscle, but by the time it became symptomatic and was FINALLY!! diagnosed, it had spread and was invading the spinal cord and was threatening paralyis or death. I understand that the priority right now is Shelby's Gamma Knife on the 15th for her new brain met, but once that is done I think that it is very important to move forward quickly with resection/treatment of the neck and back tumors. Waiting for the tumors to become symptomatic should not be and cannot be an option if you want to prevent Shelby from experiencing the severe and chronic debilitating spinal pain that Brittany now suffers as a result of the radiologist's and oncologist's inexcusable negligence in diagnosing and resecting her spinal muscle tumor much sooner and at a much smaller and more treatable size. I Hope that Shelby will be able to be discharged from the hospital tomorrow and that she will continue to feel better. I will be anxious for your update after your appointment with the oncologist on Friday. Take care Tim and keep in touch with the Board as you are able.
With special caring thoughts, gentle hugs and healing wishes for Shelby, and continued Hope,
Bonni

[D.ap]

Dear Tim, Shelby and family

When time allows, please let us know how your appointment went with the oncologist.
Special thoughts and prayers coming your way

Love,
Debbie and family