Sharmaine from Los Angeles

[D.ap]

Sharmaine,

Loved your videos!😊
Hope today finds you with the same joy and zest !
Happy birthday !!

Love,

[sharmeebles]

some updates

I started taking axitinib on the evening of my birthday, 8/11. The pharmacist said to avoid grapefruit, and that I may experience fatigue (axi tiredness on top of keytruda tiredness, *wow*)
Again, I will update my experience with axi + pembro in the Systemic Treatment section.
https://www.cureasps.org/forum/viewtopi ... =76&t=1926

Keppra has a significant side effect of depression and suicidal thoughts, which in hindsight, after finishing Keppra on the 15th may have been why the 6th-15th, including my birthday week, felt quite dark. Exacerbated with so many major changes in my condition since June (discovery of 3rd brain met and scheduling radiosurgery, preparing for and recovering from surgery of soft tissue tumors in July, starting systemic treatment and adjusting to its presence and monitoring any side effects in my day-to-day life.)

I messaged my onc on the 14th. I discovered a mass in my groin on the right side while lying down on my stomach and noticing an unevenness in the area. It is not causing pain. It can be sore when I try to examine it too much. Shifting my body and feeling it makes poor reminders and sometimes makes me feel sad. I will get a full body PET scan on the 31st. Rereading my thread from the beginning, Bonni's recommendation for an abdominal scan makes much more sense to 26yo me.

Speaking of, and to release some stress by writing this, turning 26 amidst all of this hardship is pretty heavy. I age out of my parents' insurance on the 31st and am in the process of getting covered. I just got rejected from Medi-Cal because I don't meet the income eligibility threshold. Waiting on approval through my job before looking into purchasing insurance through CoveredCalifornia. It's quite an anxiety-provoking time turning 26 with cancer and having to go through the hoops of medical insurance.

[sharmeebles]

Finally able to provide a positive update!!

Health insurance is all covered through work! No gaps in coverage! I can finally put down the worst-case scenario image I had in my head that was paralyzing me with anxiety.

Just received results from my first PET scan two days ago this past Monday.
Again, for context, I've had three brain mets treated, I have about 15 mets in right lung ranging from 5-15mm, "several" mets in left lung with a 2cm asymptomatic hilar met, and recently discovered a mass in my right groin. I'm two infusions into Keytruda, and 3 weeks of axitinib.
So before the PET scan results, I was expecting active mets in lungs and the one in the groin.

The PET scan shows uptake in the right groin and lungs, no other areas. This will be our baseline study. There may be a hint that the lung metastases may be a little smaller, I'm encouraged.

I'm relieved to hear of no additional surprises in the brain, abdomen, nor other odd unexpected places! And a small ray of hope that the lung mets are responding positively!

[D.ap]

Sharmaine ,
Great news all the way around !
When’s your first scans apart from the PET, scheduled ?
What is the onc thinking on the groin activity ?

[Naynay]

Just wanted to say congrats on this positive news and good luck with Keytruda pushing forward!
We will all be thinking of you!

[sharmeebles]

I got PET Scan updates.
The good news is my lung mets are shrinking.
Other news is the groin mass has significantly grew (currently it is quite noticeable and there is pain when poked/prodded at that can last for hours), and onc recommends exploring radiation.
I'm 5 infusions into Keytruda/axitinib with the 6th coming up next Wednesday. In my thread over at the systemic treatment section, I mentioned that my onc claimed it is most likely the axi that led to extreme hypertension (I thought it was the Keytruda, onc said it may also be so.)

My PET scan results

FINDINGS:
HEAD AND NECK:

Physiologic FDG activity is seen in the visualized brain and salivary
glands. Encephalomalacia is seen in the right frontal lobe with
associated decreased FDG activity. Postsurgical changes from right
frontal craniotomy.

Bilateral cervical level 2 lymph nodes measuring up to 7 mm with SUV
max 3.5 on left, overall stable and favored to be reactive.

CHEST:

Please note that the study is a low dose, non-breath hold CT scan,
and evaluation of small pulmonary nodules is limited.

There are bilateral pulmonary nodules:
Left lung apex nodule is s/p radiation, decreased in size with SUV
max 2.9, previously 3.4.
Left lower lobe nodule measuring up to 1.4 cm with SUV max of 3,
previously 2.4 cm with max SUV of 2.4.
A few of the pulmonary nodules have decreased in FDG activity. For
example. The anterior right upper lobe nodule measuring up to 6 mm
demonstrates SUV max 2.0, previously 8 mm with SUV max 2.7.
Multiple prior wedge resections are noted. Left lower lobe nodule
with max SUV of 1.5, previously 3.2.

Postoperative changes are seen in the left lateral chest wall from
prior mass resection with a 4.0 cm seroma. There is associated mild
to moderate FDG activity in an enlarging soft tissue component/edema
measuring 3 cm with SUV max 3.7, previously 2.6.

ABDOMEN AND PELVIS:

Physiologic FDG activity is seen in the abdominal solid organs and
bowel.

There are multiple right inguinal lymph nodes, measuring up to 2.5 cm
with SUV max 9.3, previously 1.5 cm with SUV max 5.3.

Postsurgical changes are seen from anterior left thigh mass
resection. No focal FDG activity to suggest local recurrence.

There is a 3 cm left adnexal cyst. Focus of activity is seen adjacent
to this cyst, SUV max 8.7. This is difficult to evaluate without IV
contrast, however is favored to represent a corpus luteal cyst.

There is a 6.8 cm seroma in the lower right back, stable in size from
prior exam and with mild FDG activity, SUV max 3.1, previously 2.6.

Linear activity along the lateral and dorsal aspect of the right
foot, please correlate with direct physical examination to rule out
additional mets. Max SUV of 5.8.

Reference:
Descending aorta at the level of the carina SUV mean/max: 2.6/2.9,
previously 2.6
Right hepatic lobe SUV mean/max: 3.3/3.8, previously 3.6


IMPRESSION:
Mixed response to therapy.

Right inguinal lymph nodes have increased in size and FDG activity,
the largest measuring up to 2.5 cm with SUV max 19.3. These are
compatible with nodal metastases. Focal linear activity at lateral
dorsal right food with max SUV of 5.8, unclear if this is muscle
spasm vs metastatic disease, please correlate with physical
examination.

Postoperative changes are seen from left lateral chest wall mass
resection with a residual seroma. There is an enlarging soft
tissue/edema component, now measuring up to 3 cm with SUV max 3.7,
suspicious for recurrence. Contrast-enhanced CT of the chest is
recommended for further evaluation.

Multiple bilateral pulmonary nodules have decreased in FDG activity,
now mild. The left lung apex nodule is s/p radiation, decreased in
size with SUV max 2.9, previously 3.4.

Postsurgical changes are seen from anterior left thigh mass resection
without focal activity to suggest local recurrence.

Stable post surgical changes from right lower back mass resection
with mild FDG activity.

New focus of activity is seen adjacent to a 3 cm left adnexal cyst.
This is favored to represent a corpus luteal cyst, however attention
on follow-up is recommended.

[Olga]

Hi Sharmaine thank you for the report it makes for a better picture of what is going on. They say there are "multiple right inguinal lymph nodes, measuring up to 2.5 cm with SUV max 9.3, previously 1.5 cm with SUV max 5.3." You are able to only see one, correct? Can you clarify that? as a radiation target they might be located to close to the skin and irradiating them will damage the skin and might be to pro-inflammatory to go well along with the immunotherapy. What about resecting them or cryoablating? there is Dr .Suh that could be consulted with re. cryo if it is feasible in that location.
And do not forget to get that add scanning with the contrast to re-evaluate the chest wall possible recurrence, also adnexal cyst could be re-scaned to clarify.

[sharmeebles]

From what I understand from that line, "multiple right inguinal lymph nodes," I suppose there are a few mets in one side of my groin that amounts to the visible mass. Currently, it just looks like one side of my groin is pretty swollen. I'm not sure if it's due to one lymph node or these multiple ones in close proximity to each other.

In conversation with onc, he said the mass is too large for cryo. Talking to the radiologist, Dr. Chen, in response to location, as far as being close to the skin, he only mentioned tanning. Asking onc + Dr. Chen about resection, onc said it would be the alternative, and Dr. Chen couldn't speak too much on surgery, but said if radiation doesn't seem successful we can look to alternatives.

I'm expecting to go through radiation therapy for 2 weeks, 10 rounds in total. Planning starts on Dec 15th. Dr. Chen had these comments:
- due to the location, there are possible symptoms, but not expected: loose bowel, irritated bladder
- based on my tests, he's comfortable to proceed being "aggressive" with radiation.

[D.ap]

Asking onc + Dr. Chen about resection, onc said it would be the alternative, and Dr. Chen couldn't speak too much on surgery, but said if radiation doesn't seem successful we can look to alternative

Sharmaine
Could the area be fluid build up from inflammation ?
Not a tumor ?
And or from thyroid problems ?
Infection ?