Sharmaine from Los Angeles

[sharmeebles]

update: I was seen at the Angeles Clinic, and the onc presented Dr. Wilky's study to me, saying "I'm not sure why they didn't put you on this sooner." My next step seems to be pembro + axi after I fully recover from this past surgery.

[D.ap]

Sharmaine,

Great news.
Will this be off label I assume ?
How’s your weight doing for you?
What are the goals of recovery prior to the pembro / axitinib undertaking ?
Last but not least , how are you feeling ...

Love ,

[D.ap]

Ps What kinds of tyrosine kinases inhibitors(TKIs) and or chemo treatments have you been on in the past 7 years ? Any?

[sharmeebles]

Yes, off label.
I'm a bit overweight. I'm around 155-157 lbs at 5'1". I went from around 130lbs to this weight after my craniotomy in Oct 2019 due to steroids making me hungry and probably because that brain met stole my appetite for a good week before the operation.
I haven't taken any tkis, immunotherapy, or chemo.
I'm going to ask my onc about specific recovery goals. I've been dealing with incision pain on my lower back for two weeks that made it hard to move at all (prior, I thought I was well enough to exercise, but I guess I overdid it, and that backfired. So I've been in bed, taking pain meds regulrly, and needing assistance to move, sit/stand up.) But now I no longer need assistance to move, and am feeling less of a need for the pain meds.

new update:
I just got off the phone with my radiation onc. My last brain MRI showed the 2nd brain met that was previously treated in May 2020 with 1 round of radiosurgery is still there and apparently it takes a few months to start seeing a reaction.
There's a new brain met on the left side, 3.5mm.
Options: (1) treat same way with 1 round of radiosurgery on the met or (2) whole brain radiation 10 treatments (side effects include hair loss, nausea, etc. Long term patients get issues with memory).
Considering I am about to start systemic treatment with pembro + axi, it seems the less traumatic route would be to do the 1 round of radiosurgery targeting the brain met and have pembro + axi work on the rest of the body. Rad onc agreed and said pembro goes well with radiosurgery.

I'm feeling disgruntled and annoyed with how relentless this is at the moment. And honestly, for a good two months, I've been feeling depressed about ASPS being so active in my current day-to-day: recovering from surgery, getting started on systemic treatment, paranoia surrounding the hilar met and now brain met, scheduling appts/scans, and messaging my doctors.
I miss my positive and good-humored self.

[sharmeebles]

update #2: my onc is out till tomorrow. An MD covering for him provided thoughts to my question on starting pembro + axi: "In general, it is reasonable to proceed with the pembro during radiation therapy (ie just before or just after starting). For radiation to the brain, I tend to prefer waiting on starting axitinib until after the radiation is complete."
I have 1 round of radiosurgery next Friday, Aug 7.

Just to put on record, I will be put on keppra (anti-seizure. I have no history of seizures) 2x a day for 10 days starting the night before radiosurgery. From my last radiosurgery I don't think I took keppra but they gave me one dose of steroid after the procedure. When I was put on a steroid after my Oct 2019 craniotomy for a few weeks (along with keppra as well at the time) they said it was to control swelling.

[D.ap]

Hi Sharmaine
Brain mets are truly disconcerting to the 10th degree .

I have 1 round of radiosurgery next Friday, Aug 7.

What are the possible “issues “ cons with where this met is situated ?Absolutely NO whole brain treatment considered , right ?
What region is involved in the brain ?
It will be solely treated ( cyberknife? ) or is the other being planned as well ?
I’m sorry to ask if you’ve already told us but how big was the May 2020 met ?


Hugs ..
Hang in there .
Love ,

[sharmeebles]

The May 2020 met was 3mm in the cerebellum.

Thank you so much for your response Debbie. My heart goes out to everyone involved with having to deal with asps. The emotional load is truly heavy.

[Olga]

3mm is a really small size and it should be completely treated by the radiosurgery. Is it possible to schedule the start of Keytruda treatment as close as possible to the radiosurgery treatments? there is a proven synergy between them and it is beneficial for both, the t=radiosurgery to be a success and for the immune system to recognize the tumors (works as a pointer). Question the need for Keppra. The met size is small, why is it needed at all? If it might be immune-suppressive?

[sharmeebles]

I just scheduled my first keytruda appt (Aug 5), which will occur two days before radiosurgery.

Olga - are you saying keppra is immune-suppressive? I didn't know that. I'll bring that up along with some good questions Debbie raised. Also, this current brain met (#3) is 3.5mm. 3mm was the May 2020 one (#2) already treated with radiosurgery. It's at the same size right now, apparently we have to wait longer to see a response.

To paint a picture of where I'm at right now:
- Starting Keytruda off label next Wednesday, Axitinib at some future date after radiosurgery.
- 1 round of Radiosurgery next Friday.

[Olga]

I am not that very well informed re. Keppra, but in general when multiple treatment modalities are combined, they have to be evaluated from the point of view as how they would possibly affect the response to Keytruda. One of the side effects from Keppra is increased susceptibility to infection, and it was looked at and found that it inhibits CD* Tcells function - which as I understand is the main goal of K - to take off the breaks from them, the protection that was applied by the tumors.
I found some article:
Levetiracetam but not valproate inhibits function of CD8+ T lymphocytes
https://www.sciencedirect.com/science/a ... 111300071X
perhaps the problems arise with the long term use? higher doses? I do not know, but you need to discuss the goals of the ICI treatments in that aspect

[sharmeebles]

So I messaged my onc (Dr. Rodriguez) about keppra. He says to note that it isn't immunosuppressive and that he sees no problem with it. I will ask the rad onc (Dr. Girvigian) the same questions.

[D.ap]

Sharmaine ,
If I might ask , what will
your 2 times daily dose of Keppra dose be ?
Also , how is your healing going with the Mets having just been surgically removed ?
How big of an area was involved ?

[sharmeebles]

Debbie - Thank you for the questions! I will update on the keppra dosage when I pick it up on Saturday.
As for healing, the incision on my left axillary (about 2in) has healed with no problems. As for the lower right back incision (about 4.5in), in the middle of the month I made the mistake of overdoing some exercise too soon. I woke up on the 16th with a lot of sharp stinging pains at this site whenever I moved (e.g. making slight adjustments to my position when in a seat, turning or leaning when standing, walking required very small steps, and of course the transitions to stand up, sit, or lie down). Touching around the incision or any pressure put on it was painful. It was not infected and showed no redness or drainage. The PA said my symptoms were a part of the healing process and exacerbated by the location and should slowly resolve.
For a good two weeks I've been stuck in bed on my left side. My parents graciously helped me whenever I needed to sit up or get out of bed to go to the restroom (such a dreadful and painful experience at the beginning). I've also utilized my old walker to get around as well. Since then I've taken Meloxicam (Generic for Mobic. One 15mg tablet daily as needed, with food) and Hydrocodone-5mg-Acetaminophen-325mg every four hours (Generic for Norco. Not exceeding 6 tablets in 24 hours) as needed. As of three days ago I have not felt the need for Norco. I'm back to moving around more comfortably!

I received a response from Dr. Girvigian to the questions about this third 3.5mm brain met and keppra:

The new tumor is in the posterior left frontal lobe of the brain.

Cyberknife is a machine, not a treatment. It's a tool for radiosurgery. There are many machines on the market, but honestly, the Cyberknife is the last accurate of them. Despite public opinion, this is a fact.

We use the TrueBeam STX linear accelerator. It's very accurate.

Keppra is an anti-seizure medication to prevent seizure. Even if it were immunosuppressive, which is in doubt, we are only using it temporarily. If you do not want to take it, you are subjecting yourself to an increased risk of seizure. That risk is small, however.

I also just started a thread on the Systemic Treatment section of our forum to record my upcoming progress.
https://www.cureasps.org/forum/viewtopi ... =76&t=1926

[sharmeebles]

With so many changes going on at once (i.e. surgery, systemic treatment, news of new brain met, radiosurgery, upsurge in corresponding with doctors and scheduling appointments) it's been quite overwhelming and exhausting. There are many days where I wake up with anxiety surrounding the current progression of this disease. To combat this I've been falling asleep to positive affirmation videos and when I wake up I continue to listen until I have to get up.
This one helped a little bit today to allow breaks in a fear-based outlook by way of gratitude. It can be easy to forget or truly feel gratitude in times like this. Maybe others can find this helpful if even for a few moments.

Alignment Affirmations :)
https://youtu.be/FCQPsRrXf7E

[sharmeebles]

Back home after radiosurgery on my 3rd brain met (3.5mm, posterior left frontal lobe)! I was complimented on my music choice for the session (Sam Cooke! I teared up during "A Change is Gonna Come" at the lyric "There been times that I thought I wouldn't last for long / Now I think I'm able to carry on / It's been a long, a long time coming / But I know a change's gonna come, oh, yes, it will.) I received 2mg of the steroid, dexAMETHasone (Decadron), right after treatment to control potential swelling at treated site.

Concerns about seizures + Keppra:
I'm taking 500mg Levetiracetam (Keppra) 2x a day for 10 days to prevent the risk of seizure. I have not had any history of seizures and asked what the risk was, at now and after those 10 days. I also shared that this risk was making me feel nervous about being left/sleeping alone. Radiation Therapist's response: The risk exists only within a "few" hours after treatment, and it's very low. This is the purpose of the Keppra and it being at a "high" dosage, to safeguard against that risk.
On my After-Visit summary, it is written "Patients whose symptoms prior to treatment included seizures may experience seizure activities within 72 hours after the treatment."

Moving forward:
- Continue to take Keppra 2x a day (started the night before radiosurgery. 20 pills total. Currently 17 pills left.)
- Follow-up Brain MRI in 2 months (Sometime in Oct), along with follow-up visit at Radiation Oncology on Oct 23.
8/26 Office Visit with onc + Keytruda Day 2
9/16 Keytruda Day 3
10/7 Office Visit with onc + Keytruda Day 4
10/28 Keytruda Day 5
- Will do my best to continue to follow AACR diet + lifestyle recommendations per Ivan's post https://www.cureasps.org/forum/viewtopic.php?f=1&t=1701

1) High fiber diet rich in unprocessed food. Highlights: walnuts, beans/lentils/chickpeas, fruits & veggies - a high variety
2) Stay the hell away from antibiotics
3) Sleep 8 hours or more every day (no, you cannot make it up on the weekend)
4) Do moderate cardio ~65% of heart rate, 30 mins 3x or more per week. Strength training is optional.
5) Make sure Vitamin D level isn't low and supplement it if needed
6) LOW STRESS as much as possible
7) Optional: intermittent fasting = consume all meals in an 8 hour window of the day and only drink things without calories outside this window
8) Beware: flu immunization increases the risk of serious autoimmune reactions significantly
9) Avoid biopsies and or surgeries if possible

In progress:
- Asked onc when I will start Axitinib, since radiation is completed.

Currently feeling I'm in a pocket of lifted spirits after finally having gone through this appointment-ridden week (Boring MRI, 1st day of Keytruda, Returning to Radiation Oncology for radiosurgery). A bit of my humor is coming back, here's a tiktok video I just created with my radiation mask
https://vm.tiktok.com/J6ex6WR/
Additionally my desire to sing and play the ukulele a little more is also returning, which is a good sign :) I think I want to get back to uploading ukulele covers, which was something I started at the beginning of LA's Stay-At-Home order
https://www.instagram.com/p/B--_laNFIbV ... c5gvnggncb