Kevin from California, US (Dx Feb 2012) - RIP Oct 17, 2014

[Olga]

Connie and Kevin - thanks for an update, very informative as always. I was thinking about the sacral tumor shrinking on Pazopanib and lung mets not - are they what, increasing or stable? Has Kevin had any MRI of the sacral tumor lately, preferably with+without the contrast to see if the tumor might be already dead after the IMRT treatment and this shrinkage might be just a dead tissue slowly absorbing by the body? If this is the case, he might have already developed resistance to Pazopanib and needs to change the drug?

[wangcns]

Hey all,

Finally got in all the results from the full body scan and the brain MRI. Some lung mets are stable, some have been growing (typical 1-2 mm a month), the sacrum region is stable, and there are lesions in the brain. His doctor is having him start an MTOR inhibitor, Everolimus, and we're in the process of consulting Kevin's rad onc, looking to use SBRT on the brain lesions. There's about four, still small, that weren't there in his brain scan from September 2012.

I don't think there's any data on concurrent Pazopanib and Everolimus news, I think there's a guy in the UK that's on both but other than that no data, but the hope is that it will keep the mets from spreading further while maintaining stability for the ones that are responding. The one piece of good news is that the orthopaedic surgeon we consulted about Kevin's AVN in his shoulder has said it's in a "good" location, not in a weight-bearing spot, and small enough where it's likely the body will be able to absorb the dead bone tissue and regenerate. He's taking Fosamax once a week for that. Most likely it's the combination radiation + steroids, and unfortunately we can't rule out steroid use again, especially since he may have to go on them for brain radiosurgery.

Pretty bummed to hear the news, but not wholly unexpected. Other than switching around Kevin's drug regimen to other stuff like Sutent, there's not much else we can try. Kevin's doctor offered low dose chemo with Avastin and some other stuff. We talked about clinical trials, Noah said he'd keep his ear open but that realistically there hasn't been anything exciting for soft tissue sarcomas he said. We've pretty much run through what limited rope we had, so I guess we just wait.

Last update, the clinical study using retroviruses to reprogram the body's white blood cells has been put on hold, I guess one of the patients died.

[Olga]

Very sorry to hear the news about the brain mets, but it is really fortunate that they are found early. The efficacy is higher and the side effects are lower when the overall volume is low, so try to get it done as soon as possible. I think that the current guidelines are to treat up to 4 by the radiosurgery, and some California facilities have very good experience and volume doing that - CyberKnife or GammaKnife. There is a recent study that up to 10 brain mets could be treated with the radiosurgery effectively
http://www.ncbi.nlm.nih.gov/pubmed/24621620

[D.ap]

Connie and Kevin

We are so sorry to hear the scan news of the brain.
Please know that our thoughts and love are with you both and your families.

Please let us know of how Kevin is after the procedure when it is good for you.

Much Love

Debbie and family

[D.ap]

Connie and Kevin - thanks for an update, very informative as always. I was thinking about the sacral tumor shrinking on Pazopanib and lung mets not - are they what, increasing or stable? Has Kevin had any MRI of the sacral tumor lately, preferably with+without the contrast to see if the tumor might be already dead after the IMRT treatment and this shrinkage might be just a dead tissue slowly absorbing by the body? If this is the case, he might have already developed resistance to Pazopanib and needs to change the drug?

Connie and Kevin

Was also curious of the above question from Olga?
I know you mentioned the sacral tumor was stable but was curious as to whether an MRI with contrast has been done to see if the SBRT had been paricially successful along with the pazo. What was the dose of SBRT?
That is the largest tumor in Kevin's body at this time , correct?

Keep the faith.

All my love
Debbie

[wangcns]

Yeah, the sacral tumor was definitely the biggest. I don't have updated information on his sacral tumor, unfortunately we sort of just talked about the new brain mets at our last appointment. I think the last time we had a specific MRI for the tumor, there was still inflammation and what not in the area, so they had a hard time telling what was necrotic, what was actually being shrunk by the SBRT, and what is being affected by the Pazo. We saw his rad onc in.... January-ish, I think? He said his team was very interested in Kevin's case because they don't have many cases combining Pazo + SBRT (though he took about a week, 2-week break from Pazo during the actual period of radiosurgery.) He seemed fairly encouraged by what he saw from the January scan, but Kevin's recent fully body scan should have covered the sacrum. I will have to ask.

However, Kevin had a period for about two months when he was just on the Pazopanib and before he received the SBRT for the sacral tumor, and there were already signs of progress (diminishing pain, increased mobility, numbness going away). Whether the Pazopanib continues to be effective now, 8 months out from the radiosurgery, 10 months out from starting the drug, is something we have yet to determine.

Thanks for all the well wishes, everyone. We're trying to get the radiosurgery scheduled ASAP, hope we can control the mets in the brain.

[D.ap]

Connie thanks for the additional update. I can only imagine how hard it is to stay focused in light of all that you both have in front if you . You are doing a great job!

Absolutely the brain lesions are your top priority.
Keep up the great work and be sure to take care of you too

Love
Debbie

[jenhy168]

Connie,

Who does Kevin currently see for SBRT at UCLA? Hope everything goes the best it can with Pazopanib…it's definitely a tough drug to be on.

~Jen

[wangcns]

Hey Jen, Kevin's rad onc is Percy Lee. We go over to the Santa Monica offices to see him usually.

So it turns out there are too many small tumors, many more than they originally thought. Rough estimate 20-25 small ones, the largest one is about 5mm. Dr. Lee thinks instead of SBRT, three weeks of whole brain radiation. Return for SBRT to cherry pick tumors as needed.

Any thoughts on whole brain radiation or info we should know? He is going to stay on Pazo and Afinitor during radiation.

[D.ap]

Hey you guys

Must be scary. Hugs

What is your time frame to make a descion ?
Where is the 5mm located ? Are the lesions concentrated in one region ?
The scan was enhanced?


Love
Debbie

[Jorge]

Hi Connie,

My husband George had the mets metastasised to brain since Sept 2012. He had 4 times of Gama Knife treatments. I want to share his experience for you.
George had Gama Knife on the 2 mets of ~2cm in Sept 2012. They started to shrink 3 months after the treatment, finally to ~1.7cm in 6 months later. They were treated with Gama Knife seperately again in Apr and August. But in end of Jan, 2014, they were found to be recurrence and one of them grew up very quickly.
George also had some small mets of ~5mm in the brain, all treated with Gama knife. Some of them disappear but some of them remain there 6 months after the treatment.
Based on our experience, I will not choose WBRT for George.

Take care Connie. Hope you can work out the treatment with the Doctor soon.

Regards,
Lynette

[jenhy168]

Hi Connie - My radonc is Dr. Lee too.

What is the difference, if any, between SBRT and Gamma Knife…?

For his whole brain radiation, will it be for 1-2 weeks of radiation?

[Amanda]

Hello,
i am sorry this is happening but so thankful they are small still! <3

Before you do the whole brain radiation i remember Bonnie or another regular here talking about it... I think it was Bonnie...

Please, try an talk to her before this is done <3

Sending hugs!! <3

[D.ap]

Hello,
i am sorry this is happening but so thankful they are small still! <3

Before you do the whole brain radiation i remember Bobbie or another regular here talking about it... I think it was Bonnie...

Please, try an talk to her before this is done <3

Sending hugs!! <3

Hi Connie and Amanda

On iPhone Can't figure out how to short cut copy to forum topic : (
Anyway Bonni posted back in 2009 on WBRT

Love
Debbie


Concerns about whole brain radiation treatment for ASPS
by Bonni Hess » Thu Sep 10, 2009 8:54 pm 0 Replies791 Views
Last post by Bonni Hess
Thu Sep 10, 2009 8:54 pm

[Bonni Hess]

Dear Connie,
I am so deeply sorry and shocked about Kevin's large number of brain mets that have now been diagnosed. Has he had any symtoms of headache pain (especially morning headaches), extremity numbness, loss of balance, mental confusion, etc. that are indicative of brain mets? I am grateful that the mets are small, which exemplifies the critical importance of having regular brain MRI's even if the patient is not symptomatic, but am concerned about the large number of mets which heartbreakingly rules out the possibility of resection or Gamma Knife to remove/shrink/destroy all of the mets, but perhaps a few of the largest mets could be surgically removed or Gamma Knifed. Unfortunately, WBR has, to my knowledge, not proven to be very successful in destroying and preventing ASPS brain mets as I discussed in the following 2009 Discussion Board entry:

by Bonni Hess » Fri Sep 11, 2009 3:54 a.m.

Dear ASPS Community Friends,
I am becoming increasingly concerned about the use of whole brain radiation treatment (WBRT) for ASPS brain mets based on several anecdotal ASPS patient failed treatment experiences and results with this seemingly ineffective treatment which is at best only palliative and not curative. I think that it is very important that ASPS patients be well informed, that they explore all other possible treatment options, and that they proceed very cautiously before undergoing WBRT. Based on my close observations of the past several years, it appears that WBRT is not effective in preventing the development and increased growth of ASPS brain mets probably because ASPS is so notoriously radiation resistant, and since it is not possible to administer a large enough dosage of radiation to the entire brain with WBR, as opposed to the intensive targeted radiation which can be administered with Gamma Knife or Cyberknife treatment for individual small brain mets. A validated and very serious possible side effect of WBRT is permanent debilitating short term memory loss and mental confusion which I personally know was tragically experienced by at least two ASPS patients treated with WBRT. Based on these anecdotal observations of failed efficacy of the treatment and the known potential for severe memory impairment and functioning, I personally feel that WBRT should be used only if there are no other viable treatment options, and if potential benefits of the treatment can be documented with available data to ourweigh the considerable risks. Based on our personal experience with Brittany's multiple brain mets during the past five years, resection, if the tumor can be safely surgically removed, seems to be the best treatment option. If the tumor cannot be successfully resected because of location, and if the tumor is small enough to successfully respond to radiosurgery (less than four millimeters in our experience) Gamma Knife or Cyberknife seem to be the next best option to try to kill/shrink the tumor. An effective systemic treatment to try to prevent the development of new brain mets seems to be a better option than WBRT, but the treatment must be able to cross the blood brain barriar. However,if the location, size, and the number of tumors make it impossible to surgically remove or to Gamma Knife or Cyberknife the tumor/tumors, and if no effective systemic treatment is available, then WBRT may have to be considered as a treatment option. I am not a doctor, and I do not intend to provide medical advice, but I just want to share my anecdotal observations and concerns regarding this treatment which too many doctors seem to continue to advocate and prescribe despite the dismal record of treatment success and outcome for patients with ASPS brain mets. I welcome any further input or opinions from anyone who may have any personal experiences or anecdotal or researched information to share with this Forum regarding this treatment.
With special caring thoughts and continued Hope,
Bonni


I understand that given Kevin's large number of brain mets, there are very few treatment options so WBR may be the only alternative, and I am holding VERY tight to Hope that it WILL be successful for Kevin. However, it is extremely important that you request data from the radiation oncologist regarding the statistical and anecdotal outcome of WBR for ASPS to support his recommendation for WBR, and also information regarding the side effects of WBR including possible permanent short term memory loss. Additionally, rather than Kevin remaining on Pazopanib which obviously has unfortunately not prevented the development of brain mets, has any consideration been given to trying a different systemic treatment like Cediranib or Cometriq (Cabozantanib)? I have increasing concerns about the efficacy of Pazopanib given the disease progression experienced by several ASPS patients who were on Pazopanib including at least one who developed brain mets while on the drug.
I wish that I knew about any new or more promising treatment options for ASPS brain mets, but please know that I am here to try to share any information that I do have, and that I am holding dear Kevin and you very close in my heart and my continued most caring thoughts.
Reaching out across the miles to embrace you and Kevin with special hugs, deepest caring, healing wishes, and continued Hope,
Bonni