Katie from Minnesota

[KatieHannasch]

Hi everyone!
I have spoken to some of you on the Facebook group, but have just followed along so far on this website. I’d like to post my story here as well.

I am a 32 year old woman: wife, teacher, and mother to two young boys.

In August 2020, at 31 years old, I was diagnosed. Primary tumor was 18cm in left thigh. Mets in lymph nodes and too many tumors in lungs to count. Started Pembrolizumab end of Sept 2020. Showed good response to pembrolizumab- primary shrink to 11cm and lungs now have “only small evidence of disease”. I have experienced a wide range of side effects from fatigue, nausea, migraines, skin rash, arthralgia, dry mouth, mouth sores, blurred vision. I have had 14 doses of pembrolizumab as of last week.

Last week I had my latest scans done. They showed stable disease in my primary and mostly stable in my lungs- a few tumors were slightly larger but onc said growth margin was small so he considered it stable. However, the chest scan picked up a possible spot on my liver. Waiting for prior authorization so I can get that scanned this week hopefully.

I know stable is good. I’m clinging to the fact that ASPS is slow growing. However, this is my first scan since diagnosis that has shown anything other than positive. I’m scared that the keytruda may have stopped working. Has anyone else experience stable disease and then had the drugs start working again?

I’m so grateful for this community of other ASPS warriors and their loved ones! This journey has been very isolating… so it is good to know I’m not alone!

[Olga]

Hi Katie,
welcome to our board. Thank you for the story.
How soon did you have the registered response to Keytruda?
What scans did you have when diagnosed, for staging? Please list every scan.
Have you ever had an abdominal MRI? Is this part of the liver that has the suspicious finding, located at the top of the liver? in this location part of the liver is seen on the CT scan if done with the contrast. You really need them to go back and review any scans where this part of the liver can be seen to get a better understanding of what is going on - a progression at the new site or missed met became inflamed from K attacking so more visible.
In general we have already had cases with separate mets progressing while the rest is stable or even reducing on K or other ICI. Or the resistance develops in some mets but not in another. The mets were treated locally (cryoablation, RFA or radiosurgery) or even surgically removed. Sometimes it takes care of the problem.
The other thing is primary. If it became easier to resect and is not shrinking anymore, I would think of getting rid of it. Primary ASPS tumor suppresses immune system.

[ntran727]

Hi Katie,

Welcome to the group! Seems you’ve had great response so far but I would agree to maybe plan to remove the primary tumor? Maybe they can do some RT to it as well to shrink it even more and help the immunotherapy work better at the same time before removing it. Olga has already discussed the resistance issues which is very true. Maybe you can also add in axitinib if seems like you have new Mets, but you would need to confirm that first.

Good luck with the scan and keep us posted on the result.

-Nhi

[KatieHannasch]

Hi Olga,
Thanks so much for your quick response! When I was diagnosed, I had a CT w/contrast of my chest, a CT w/contrast of my abdomen (because of swollen lymph nodes in my pelvis), and a MRI of my thigh, a brain MRI. I have repeated the chest CT and thigh MRI every 3 months. I will be due for the brain scan in September. I have never had a full body scan, although now that I have read thru many other stories on this forum, I will be pushing for this… especially in light of the new possible met on my liver.

I have been doctoring with Dr. Okuno, a sarcoma specialist at the Mayo Clinic. I also got a 2nd opinio from Dr. Rattan at MD Anderson. He felt that Dr. Okuno was one of the best sarcoma drs and that we should stay with him. He agreed with my treatment plan. However, since the Mayo Clinic is 5 hours away, I see a regular oncologist and consult with Dr. Okuno. I’m thinking of changing this to just doctoring with Dr. Okuno.

I saw response to the keytruda within the first three months. Dr Okuno called the response “excellent”. Every scan I have had until this last one has showed continue shrinkage. Originally, Dr. Okuno said that he would like me to stay in keytruda for two years before we make any decisions about resection. I am going to ask him at my appt this week about the cryoblation.

Again, thank you so much for your commitment and caring for all of us on this forum! It means a lot!

[KatieHannasch]

Seems you’ve had great response so far but I would agree to maybe plan to remove the primary tumor? Maybe they can do some RT to it as well to shrink it even more and help the immunotherapy work better at the same time before removing it. Olga has already discussed the resistance issues which is very true. Maybe you can also add in axitinib if seems like you have new Mets, but you would need to confirm that first.

Hi Nhi,
Thanks so much for replying! I will again ask about resecting. Originally, the tumor was so large that the surgery would have been quite invasive. The orthopedic surgeon at Mayo that I spoke with said he would need to remove 2 of my quadriceps and replace them with muscles from my back as well as fitting me with a permanent knee brace to give me the chance of walking. Because of this, we opted to try the keytruda first. Radiation was only mentioned as a means for pain management and the pain really went away for the most part when I started to see a response from the keytruda.

Adding axitinib has been the backup plan if keytruda stopped working. However, my insurance will not cover it. We have been fighting with them for months. $70,000 a year is just not doable for our family at this time. I don’t know what my next step should be in regards to that.

[Olga]

Katie, since you have few CT scans of that area - top of the liver I assume? - pleas ask the radiologist to go back and to re-review them side by side with the last one available where the liver met was found. They may find it on the earlier scans as well, just not that visible.
There are cryoablation drs at Mayo, and some excellent surgeons as well so I would ask to re-evaluate the possibility of the primary resection based on the reduced size. They can also consider the fact that ASPS is usually not locally invasive and the surgery might be planned with less extensive removal of the surrounding tissue, to preserve the full movement ability. It is called sub-optimal resection and in some ASPS cases it is justified. Primary tumor is now 11 cm and it is not huge, we have seen bigger ones resected with success. Alternatively you can have the liver met treated with cryo or radiosurgery first and re-evaluate the size of the primary tumor again.

[Ivan]

Seems you’ve had great response so far but I would agree to maybe plan to remove the primary tumor? Maybe they can do some RT to it as well to shrink it even more and help the immunotherapy work better at the same time before removing it. Olga has already discussed the resistance issues which is very true. Maybe you can also add in axitinib if seems like you have new Mets, but you would need to confirm that first.

Hi Nhi,
Thanks so much for replying! I will again ask about resecting. Originally, the tumor was so large that the surgery would have been quite invasive. The orthopedic surgeon at Mayo that I spoke with said he would need to remove 2 of my quadriceps and replace them with muscles from my back as well as fitting me with a permanent knee brace to give me the chance of walking. Because of this, we opted to try the keytruda first. Radiation was only mentioned as a means for pain management and the pain really went away for the most part when I started to see a response from the keytruda.

Adding axitinib has been the backup plan if keytruda stopped working. However, my insurance will not cover it. We have been fighting with them for months. $70,000 a year is just not doable for our family at this time. I don’t know what my next step should be in regards to that.

Once you get PD-1 response, it should be durable. Keep having as healthy of a diet and lifestyle as you can.

I'd try this after PD-1: https://en.wikipedia.org/wiki/Talimogene_laherparepvec and you need a cutaneous tumor for injecting that into. That primary would be perfect.

[KatieHannasch]

Seems you’ve had great response so far but I would agree to maybe plan to remove the primary tumor? Maybe they can do some RT to it as well to shrink it even more and help the immunotherapy work better at the same time before removing it. Olga has already discussed the resistance issues which is very true. Maybe you can also add in axitinib if seems like you have new Mets, but you would need to confirm that first.

Hi Nhi,
Thanks so much for replying! I will again ask about resecting. Originally, the tumor was so large that the surgery would have been quite invasive. The orthopedic surgeon at Mayo that I spoke with said he would need to remove 2 of my quadriceps and replace them with muscles from my back as well as fitting me with a permanent knee brace to give me the chance of walking. Because of this, we opted to try the keytruda first. Radiation was only mentioned as a means for pain management and the pain really went away for the most part when I started to see a response from the keytruda.

Adding axitinib has been the backup plan if keytruda stopped working. However, my insurance will not cover it. We have been fighting with them for months. $70,000 a year is just not doable for our family at this time. I don’t know what my next step should be in regards to that.

Once you get PD-1 response, it should be durable. Keep having as healthy of a diet and lifestyle as you can.

I'd try this after PD-1: https://en.wikipedia.org/wiki/Talimogene_laherparepvec and you need a cutaneous tumor for injecting that into. That primary would be perfect.

I know this is a silly question, but what is a PD-1 response? What would be durable? I feel like I really don’t understand this cancer even though it’s all over in my body.

[Olga]

Katie, the treatment you are now on - Keytruda (generic name is pembrolizumab) is an antibody directed against the PD-1 receptor on the cell surface. The drug blocks the PD-1​. Tumors use PD-1 to avoid being discovered and killed by immune system, and once the PD-1 is blocked, in some lucky cases the immune system is suddenly able to sense the tumors and starts to kill them. Then you see the tumors starting to get smaller. It is called the response to treatment.
Once the immune system kills the tumors, it creates the memory cells with the information about this alien and is able to find the similar targets in other places around the body, and keep attacking them for some time. It is called the durable response.

[KatieHannasch]

Olga, thank you so much for that description. It makes total sense. This forum has been invaluable… without it, I wouldn’t have a clue at all what I’m dealing with!

[D.ap]

Hi again Katie !
Just wanted to welcome you and ask if you’ve had a base bone yet ..
Ivan composed a wonderful post on the schedule that should be followed -

https://cureasps.org/forum/viewtopic.php?f=1&t=819

Have you viewed the actual scan of the liver with the oncologist yet ?
And are all your scans performed at the same facility ?
Keep an eye on the liver .
Till next time

Sincerely ,

[D.ap]

Hi everyone!
I have spoken to some of you on the Facebook group, but have just followed along so far on this website. I’d like to post my story here as well.

I am a 32 year old woman: wife, teacher, and mother to two young boys.

In August 2020, at 31 years old, I was diagnosed. Primary tumor was 18cm in left thigh. Mets in lymph nodes and too many tumors in lungs to count. Started Pembrolizumab end of Sept 2020. Showed good response to pembrolizumab- primary shrink to 11cm and lungs now have “only small evidence of disease”. I have experienced a wide range of side effects from fatigue, nausea, migraines, skin rash, arthralgia, dry mouth, mouth sores, blurred vision. I have had 14 doses of pembrolizumab as of last week.

Last week I had my latest scans done. They showed stable disease in my primary and mostly stable in my lungs- a few tumors were slightly larger but onc said growth margin was small so he considered it stable. However, the chest scan picked up a possible spot on my liver. Waiting for prior authorization so I can get that scanned this week hopefully.

I know stable is good. I’m clinging to the fact that ASPS is slow growing. However, this is my first scan since diagnosis that has shown anything other than positive. I’m scared that the keytruda may have stopped working. Has anyone else experience stable disease and then had the drugs start working again?

I’m so grateful for this community of other ASPS warriors and their loved ones! This journey has been very isolating… so it is good to know I’m not alone!

Hello Katie ,

As per your permission given ,I am going to share the facts which I found interesting of your time line prior to being dx’d with ASPS .

1) you had been diagnosed with Hashimoto disease (hypothyroid controlled by levothyroxine ) , in 2015. You remembered having felt a lump .

2) Babies born 2015 and 2017.

3) dx’d August 2020 with an 18cm left upper thigh tumor.
Began treatment with Keytruda .

3) April 2021 ct scan showed primary at 11cm.
The beginning of Keytruda dose was on 175mcg of
levothyroxine .

If you wouldn’t mind elaborating on how your thyroid values varied , during your Keytruda infusions . Were you hyperthyroid at times ?

Katie I want to thank you again ,from the bottom of my heart , for agreeing to share without hesitation with the group.
This kind of info can add to our arsenal of info to aid us in getting one step closer to curing ASPS!😊💞

Much love ,

[ecurbow]

Seems you’ve had great response so far but I would agree to maybe plan to remove the primary tumor? Maybe they can do some RT to it as well to shrink it even more and help the immunotherapy work better at the same time before removing it. Olga has already discussed the resistance issues which is very true. Maybe you can also add in axitinib if seems like you have new Mets, but you would need to confirm that first.

Hi Nhi,
Thanks so much for replying! I will again ask about resecting. Originally, the tumor was so large that the surgery would have been quite invasive. The orthopedic surgeon at Mayo that I spoke with said he would need to remove 2 of my quadriceps and replace them with muscles from my back as well as fitting me with a permanent knee brace to give me the chance of walking. Because of this, we opted to try the keytruda first. Radiation was only mentioned as a means for pain management and the pain really went away for the most part when I started to see a response from the keytruda.

Adding axitinib has been the backup plan if keytruda stopped working. However, my insurance will not cover it. We have been fighting with them for months. $70,000 a year is just not doable for our family at this time. I don’t know what my next step should be in regards to that.

Hi Katie,

I'm new to the group, but wanted to to see if you have asked your doctor to reach out to the manufacturer of axitinib to ask for assistance. I know they do this. They did it for me. Additionally, have you tried appealing the decision of your insurance company? This worked for me after providing more docs.

Take care,

Ethan