Jen from California - Dx 2009

[Bonni Hess]

Thank you for your thoughtful updated information dear Jen. I am so sorry that there may be recurrence of your treated liver met and that a met has now been diagnosed near your spine. I am very perplexed by the description of the spinal area met as being "stable" which indicates to me that the met has been seen in previous scans but its presence was inexplicably/inexcusably either not documented by the radiologist in the radiology report, or not mentiomed to you by your oncologist. You have been offered some excellent input and advice by the other Board members which I mostly agree with, but based on our experience with Brittany's spinal area met I think that treatment of your spinal area met should be immediately addtessed and resected or Cryoablated if possible. I strongly disagree with your doctor's advice/plan to "just keep watching this spot instead of going to treat it now".As we heartbreakingly learned with Brittany's spinal met, ASPS spinal area mets can grow very rapidly and left untreated/unresected can invade the spinal canal threatening paralysis or death. After failed radiation caused Brittany's rapidly growing large spinal area met to spread up and down her spinal cord, it was only through the expertise of her extremely talented neurosurgeon and a Life threatening emergency major laminectomy that removed the large tumor as well as a third of each of 7 cervical and thoracic vertebrae, that Brittany's Life was saved and paralysis prevented. I will NEVER understand some doctors naive and irresponsible "wait and watch" attitude and approach to treating this disease!! All of my extensive research, observations, and 16+ years of personal ASPS experience supports the critical importance of addressing and treating mets at the smallest size for the best possible outcome. I think that a closer examination and evaluation of your "stable..." met is critically important. I share your great Hope that your new RGX-104 treatment will be very siccessful in stabilizing the progression of your disease, but I am concerned about the liver met recurrence, spinal area met, and small amount of increased growth of a few of your lung mets that has occurred since you began your new treatment two months ago. Based on these issues, I personally think that it is important that you explore/pursue treatment for your liver met recurrence and the spinal area met as soon as possible even if doing so means that you will need to take a temporary break from rhe thus far unproven RHX-104 treatment. Take care dear Jen and keep in touch as you are able. With special concern and deepest caring, healing wishes, and continued Hope, Bonni

[arojussi]

How long has this soft tissue met been stable? If it has been stable less than 6moths then I wouldnt trust that it will stay stable for long. I might be wrong here but even though you have wide spreaded disease there isnt many mets treating your life and usually asps grows slowly, so if life treating mets are treated you can life years or even longer if you find good systemic treatment. This kind of aggressive treatment Only makes sense for asps. If your met is alreary causing symptoms then it should definetely be treated, because as met grows symptoms will soon get way worse especially if met grows fast. Yes with radiation and ablation there are risks (radiation can damage surrounding tissue and ablation especially rfa Can spread cancer cells, but these risks are in my opinion smaller, than risks of letting met grow and soon it will damage surrounding tissue more than radiation would have.) I strongly believe cryo is savest way to treat this met. Cryo also doesnt cause much stress to rest of your body. If met grows into spine you might need surgery and that will cause great stress to your body. So once again how conficent is your oncologist that this met wont grow in the future?

[Bonni Hess]

Hello again dear Jen, It is important that you ask your doctor on what basis they are saying that your spinal area met is "stable", how long ago it was first seen on your scans, and why it wasn't noted and discussed with you when it was first detected ?!? I understand that you heartbreakingly have innumerous and widely disseminated mets and that an effective systemic treatment must be found to try to stabilize your disease progression and shrink/destroy your mets, but in the meantime the most concerning and dangerously located mets like your spinal area met and the liver recurrence need to be addressed and treated as soon as possible to prevent them from growing too large ro be successfully treated. YOU DO NOT WANT TO WAIT FOR THEM TO BECOME SYMPTOMATIC because they may then be too large to treat!! Successful management of this very challenging disease requires a very pro-active approach, and NOT A "wait and watch" which allows mets to just continue to grow!! With additional concern, special caring thoughts, healing wishes, and continued Hope, Bonni

[jenhy168]

Okay, I will definitely press and ask more questions about the spinal area met. I hate when doctors swing in and out and don't give enough time to review scans with me. If it was up to me, I would want to have the doctor look at when this spinal area met first appeared, and how big was it when it first appeared on the actual scan. Especially since it was Never mentioned in any other CT scan. You guys make a good point and I agree with you because if it showed up 2 years ago & stable vs showed up 4 mos ago & "stable", it's a big difference. They (onco & NP) make it seem like...oh you have a lot of mets, sometimes the radiologist doesn't mention all....
-----It's like, um okay, but this is a totally different area (than the lungs) and it's in a sensitive area since it's near the spine (which could be potentially very harmful/painful if it spreads to spine)...

Anyway, I remember on Tuesday when I saw him, my onco said it's in a "safe" area and not in the spine. But either way, I will see if I can have him refer me to a cryo doc since it seems like people in this forum recommend cryo most? I guess cryo better than RFA? And RFA better than SBRT? I'm sure it all depends on exact location and size of the met.

I wonder if my main oncologist disagrees with me and doesn't think I should treat it, if I can still see a Cryo or RFA or SBRT doc. I think since I have HMO i have to get his referral / approval in order to see the other specialist docs in my network.

I really don't get why so many docs are on the side of Don't treat and wait rather than be proactive?? So frustrating.

[jenhy168]

Also, honestly I don't care that much at this point to stay on the rgx trial. The scans came back mixed so why should I even believe it's helping. So if I had a choice between 1) get liver and spinal area met treated and get kicked off the trial vs 2) don't get spinal area met & liver treated but stay on trial, I would definitely choose option 1.

Again this rgx trial was a "think out of the box" treatment option for me, so I don't even have high hopes for it. Since it's a phase 1 trial, they do a lot of tests on me. The weekly testing for it is getting very tiring for me.

The trial I wanted to get access to is the trial Jolie's mom is on. Unfortunately my onco tried to get me access to trial but I don't think they wanted another ASPS patient.

[jenhy168]

Bonni - what location was Brittany's spinal area met? And how large was it? Did you already know it was growing fast before it was treated? And do you think the spread was caused because the radiation treatment had failed? What type of radiation treatment was it?

[Bonni Hess]

Dear Jen, To answer your questions with more information and details please read the information in the "Brittany from Washington" topic in this Personal Updates section beginning on page 1 of her topic with my April 27, 2008 post. Due to inexcusable radiologist negligence, Brittany's large 5.9 Cm. by 3 Cm. by 2.6 Cm. spinal met was not found until she became symptomatic with upper back pain for which we requested an MRI, and then devastatingly learned that the spinal met had been clearly visible for 6 months in her 2 previous chest CT scans but had inexcusably not been reported in the radiologist report!! Subsequent emergency surgery to remove the now dangerously located met was unable to safely remove all of the tumor so Brittany began intensive standard photon radiation to try to destroy the remaining unresected tumor tissue, but devastatingly the radiation seemed to
only cause more aggressive spread of the remaining tumor up and down the spinal cord necessitating another emergency surgery 3 weeks after she began the totally failed radiation treatment. In reviewing Brittany's scans we found that when the spinal area met was first visible on the scans, but inexcusably not reported by the radiologist, the then small met was located in an easily resectable area of the soft tissue in Brittany's back, but by the time it became symptomatic 6 months later, it had devestatingly spread to the area adjacent to the spinal cord threatening spinal cord invasion, paralysis, and possibly death. Had we have been made aware of the existence of the met when it was first seen we would have definitely sought immediate resection/treatment of it and Brittany would not have been subjected to the past 9 years of severe, chronic, debilitating post op pain that has resulted from the major laminectomy that she had to undergo as the result of the tumor which had inexcusably negligently gone unreported and therefore untreated for 6 months!! Time is your enemy with ASPS mets and they MUST be resected/treated as soon as possible rather than just "watched". It is very late, I am very tired, and Brittany's spinal met experience is well documented for you to read in my posts in her Personal Updates topic , so I will close for now with special caring thoughts, healing wishes, and continued Hope, Bonni

[D.ap]

Jen
If you go to the search section , and type in just spinal met, there are lots of references to various folks experiences with just that topic
Olga had given this to Tom and Kathy back in 2016 .
Looks like plan A and plan B , if either of them don't
work .
I think after Bonni's statement and reminder of the heart breaking situation with Brittanys spinal met, that it is truly important to have a plan to take care of the met.
Soon
https://www.ncbi.nlm.nih.gov/m/pubmed/26606009/

[jenhy168]

Dear Jen, To answer your questions with more information and details please read the information in the "Brittany from Washington" topic in this Personal Updates section beginning on page 1 of her topic with my April 27, 2008 post. Due to inexcusable radiologist negligence, Brittany's large 5.9 Cm. by 3 Cm. by 2.6 Cm. spinal met was not found until she became symptomatic with upper back pain for which we requested an MRI, and then devastatingly learned that the spinal met had been clearly visible for 6 months in her 2 previous chest CT scans but had inexcusably not been reported in the radiologist report!! Subsequent emergency surgery to remove the now dangerously located met was unable to safely remove all of the tumor so Brittany began intensive standard photon radiation to try to destroy the remaining unresected tumor tissue, but devastatingly the radiation seemed to
only cause more aggressive spread of the remaining tumor up and down the spinal cord necessitating another emergency surgery 3 weeks after she began the totally failed radiation treatment. In reviewing Brittany's scans we found that when the spinal area met was first visible on the scans, but inexcusably not reported by the radiologist, the then small met was located in an easily resectable area of the soft tissue in Brittany's back, but by the time it became symptomatic 6 months later, it had devestatingly spread to the area adjacent to the spinal cord threatening spinal cord invasion, paralysis, and possibly death. Had we have been made aware of the existence of the met when it was first seen we would have definitely sought immediate resection/treatment of it and Brittany would not have been subjected to the past 9 years of severe, chronic, debilitating post op pain that has resulted from the major laminectomy that she had to undergo as the result of the tumor which had inexcusably negligently gone unreported and therefore untreated for 6 months!! Time is your enemy with ASPS mets and they MUST be resected/treated as soon as possible rather than just "watched". It is very late, I am very tired, and Brittany's spinal met experience is well documented for you to read in my posts in her Personal Updates topic , so I will close for now with special caring thoughts, healing wishes, and continued Hope, Bonni

Thank you Bonni for sharing and yes I read your posts about your daughter last night. Sorry to have kept you up...
Will definitely use this knowledge when talking to my onco.

[Bonni Hess]

Thank you dear Jen. I Hope that you and others can benefit from our hard earned experience and that my shared anecdotal experience information will help prevent you and others from experiencing and suffering from the too many medical mistakes that are inexcusably made by the too many naiive/nonchalant/ irresponsible doctors who take a palliative non pro-active approach to treating ASPS patients. With special caring hugs, healing wishes, and conrinued Hope, Bonni

[jenhy168]

Update: My Brain MRI scan done on Monday showed a new lesion 4x6mm. (see below scan result). My two small other lesions that were treated by SRS are stable.

Per scan: "New 4 x 6 mm enhancing dural based lesion along the right parietal lobe with associated vasogenic edema. No hydrocephalus or mass effect.
Stable right occipital lobe nodule.
Nodules in the left occipital lobe and left frontal lobe are no longer seen. "

Due to this new brain lesion and recurrence of liver met (previously ablated), I will be stopping my RGX 104 clinical trial.


These CT abdomen & MRI brain scans were compared to scans from ONLY just 2 months ago in July. So surprising to see these new growths. I have a theory that this clinical trial made my condition worse. Not sure if that's possible but my onco said it wouldn't have made it worse.

Anyway, stopping the clinical trial and will be pursuing SRS treatment of the brain and Y90 embolization for liver recurrence (due to oblong shape of the recurred liver lesion). Hopefully I get all the approvals needed from insurance to get this done once I consult the interventional rad specialists.

[Olga]

Dear Jen, I am sorry to hear re. new brain met. The good thing is that the other two treated previously are no longer seen so they have been definitively killed by the SRS so this is the good reason for the insurance. With the liver met, I would still try to cryoablate it as the cryoablation is a very good tool for the oblong shaped mets -they use 2 or 3 needles the create a corresponding shape ablation zone.

[jenhy168]

Thanks Olga.

My previously treated brain mets were 1mm or less than one mm in size, so they were very small. This new one is much bigger at 4x6mm. It's on the lining covering the brain, so I don't know if that makes any kind of difference or whether those spread easier, but yea. I assume my radonc will want to treat with SRS again....

[D.ap]

Hi Jen
I ,too ,am so sorry to hear of the scan results .

I agree with Olga that the insurance company will see the results of your prior success and that will be the ticket for approval .
Let us know how you are and what you find out .
Hugs
Debbie

[arojussi]

With srs control rate of mets smaller than 6 mm is practically 100 percent. So even though this met is bigger than ones treated before it is still very small. I am more concerned about location of this brain met. Is it in meninges? Is there leptomeningeal spread?