Tom from Pennsylvania - Dx 2002, RIP 2021

[Kathy]

Hello Everyone,
I need your help in explaining something to me. TJ had a CT scan last week to get a better look at everything in the lungs and abdomen. This test was done at our local hospital. The report was faxed to Dr. Burgess in Pitt but we are mailing the actual scan to her today. She called TJ after reading the report and said there is no stomach met. That it was a mistake on the pet scan? This has me so confused. I emailed her and asked how it could be a mistake if it has shown on previous pet scans and has grown in size? Can someone explain this to me. Can a met show up on a pet scan but not a ct scan. I asked a local friend who is a Dr. to look at the CT scan for us and he said he cannot find it, but it is on the past pet scans and is consistent with being a met.
I feel so confused right now. Obviously it would be wonderful if there was not a met there, but I feel like they are missing something and giving us false hope.

On another note, we are meeting with Dr. Spiro to see if he can help with the back. We see him on the 7th. Hopefully he can help.

Kathy

[Kathy]

it is showing up and has showed up on the pet scan, but hasn't been detected on the ct scan. Not only is it showing up on the petscan but it has increased in size when compared to 2 years ago. What other testing or scan could be done. I don't want something to be missed or assumed to not be an issue when it is.

[Olga]

Hi Kathy, the obvious way to verify what is going on there is to request the MRI of that abdomen area, since there is an inconsistency here (false positive?). Where is it located, what does the PET report say? ASPS tumors are always very vascular when they are bigger than 5-7 mm and therefore should be very visible on the MRI (may be with the contrast is better?).

[Kathy]

After learning that more tumors have shown up in the lungs and others have grown slightly, Tj and his oncologist agree that he will start the immunotherapy trial this summer. It should be ready to start in Pittsburgh in June or July. Until then we pray everything stays in check. The brain tumor that was treated in January showed some swelling. We believe this is due to the radiation and it should go down. We are waiting to hear from the neurologist to get his opinion. The L4 area was stable. Even though it is stable, continues to be a very concerning spot. TJ has so much pain. We have consulted with numerous surgeons and no one will touch it.As for the spot they thought they saw in the stomach, now with better scans, they are saying they do not see it. Prayers as always, to all of you.

[Olga]

Kathy - thank you for the update. Do you have the report from the lungs CT? What exactly s the situation there - how many mets are there bigger than few mm, and how many of them are new (we know that they are most probably not new). Are the previously treated lung mets growing again?
After Dr.Rolle surgery we deal with the lung mets every now an then when the remaining ones grow but we were able to have 1-2 cryo ablations per a year to fix them - we were very happy to have Dr.Littrup in our treatment team who was always very instrumental in reaching very difficult located mets, sometimes treating few at once. He is now at the Crittenton Hospital in Rochester, MI - it is in Detroit on its North edge. You might want to consult him.
http://www.cureasps.org/forum/viewtopic.php?f=55&t=1296

Re.abdominal met seen before but not found now - it is not exactly the final say on it, it needs to be checked as they might simply not been able to find it. Was it MRI this time? Ivan's pancreatic met was very difficult to see/find - few different reading would give very diff. opinion and there were even the very experienced surgeons that did not see it at all.

Re.brain - agree, it is most probably post-treatment changes.
Re. spine - it is probably post-irradiation damage. Is the next MRI scheduled to check it later?

[D.ap]

Hello Kathy
I'm so sorry to hear of growth. You've all been so brave and proactive for over 14 years .

I hope you've found out good news from the neurologist on the brain tumor .
Has Tom stopped the votrient as well?

What immune therapy Med would Tom be on with the
trial ?
Write when u are able
Love
Debbie

[Olga]

Kathy, I know from your FB post that Tom is starting some clinical trial that incl. atezolizumab (Tecentriq). Is it a combination trial? Can you please post its number here.

[D.ap]

Hi Kathy

I'd love to see results as well.
Does Tom have a contact in his wallet for a doctor to reach between weekly visits if needed? To give to medical professionals if need be? As has been pointed out in LOTS of articles on immune therapy and its newness to the market , lots of health professionals don't know how to address possible autoimmune side effects. Especially when it's new to the side effects list.

Love
Debbie

[Kathy]

Hello everyone,
It has been too long since we have posted and for that I apologize. Tom started the following trial at UPMC this past June.
https://clinicaltrials.gov/ct2/show/NCT03141684

His last scans done 6 weeks ago showed no new mets, 2 mets in the lungs were smaller as well as the met at the l4. Tomorrow we head to Pittsburgh again for scans and blood work and if all looks good, treatment too. We will let you all know how Tom makes our.

Other than fatigue he has felt really good. I promise to post more often and give more detailed updates.

Love and prayers to you always,
Kathy

[D.ap]

Kathy and Tom,

Wonderful news!

Looking forward to more good news .

Safe travels tomorrow .


Love
The Pearson’s

[Kathy]

We are very thankful to report that Tom's tumors continue to shrink. We were told that there is nothing new, 2 of the lung tumors have shrunk by 40%, and one of the previously treated Brian tumors is completely gone. Thy also said the troublesome L4 tumor is smaller. So far Tom feels really good especially when you look at how he felt on other treatments. We do not have the official reports but they are being emailed to us once they are complete. He will go again for treatment in 3 weeks with scans and treatment again in 6.

All the best to you all,
Kathy

[jenhy168]

So glad to hear that Tom's feeling good and doing well on treatment.

[Bonni Hess]

Thank you for sharing this VERY good and encouraging news dear Kathy . I am SO
happy and grateful that dear Tom's most recent scans show no new tumors, that his mets are continuing to shrink and disappear on his new Tecentriq (Atezolizumab )
Immune checkpoint inhibitor (ICI) treatment, and that he is feeling good and tolerating the treatment well . Perhaps Olga can move your post to the Tecentriq (Atezolizumab) topic in the Immune checkpoint inhibitor (ICI) section on the Board where everyone can more easily follow Tom's and other patient's treatment experiences and results on this promising new drug. I will be anxiously awaiting your next update which will Hopefully bring more GOOD NEWS!! of continued treatment success, and in the meantime please feel the special embrace of my happy hugs and my shared great joy, special caring thoughts, and continued Hope, Bonni

[Ivan]

Kathy,

If the spinal tumor continues shrinking - does resection become possible at a certain size?

I would consider resecting it once it hits that size. Could be the best chance to get rid of it for good!

[MartinBube]

Great news!!

I've been checking lately to see how you guys are but I'm very happy for the good progress it just gives us hope and sometimes that is what we only need