Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Starting this thread! I start keytruda next Wednesday Aug 5th, two days before radiosurgery on the 7th. Axitinib will start after radiosurgery, not scheduled yet.

Currently sitting in the chair receiving my first 200mg of pembro 🤟🏾 I've been mindful to eat lots of fiber as per Ivan's post about 5x increased efficacy (thank you so much!) and have been getting a lot of sleep.

Sharmaine ,
Here’s to great results !
Will be thinking of you during days to come .💞
Love ,

Hi Sharmaine
I wanted to share an integrative doctor’s u tube link that my husband and I have used over the years .
Remember , don’t feel like any question to your onc is insignificant ..
Your piece of mind is as important as the medicine.
They work hand in hand !😊💞

https://m.youtube.com/watch?v=_EqfXLXzh ... ex77I3LnqA

Thank you Debbie! I appreciate this helpful resource.

I just picked up axitinib (it is labeled Inlyta, 5mg) and took my first dose. I will be taking 1 tablet 2x a day. My onc named side effects will include fatigue, skin rash, diarrhea, elevated liver enzymes, and others.

The medication guide for Keytruda I received at my first appointment, a nurse highlighted these symptoms for me

Most common symptoms (occuring in greater than 30%)
Anemia, fatigue, hyperglycemia, hyponatremia, hypoalbuminemia, itching, cough, and nausea.

These symptoms are reasons to contact the doc/health care provider immediately, day or night.
Fever of 100.4F (38C or higher, chills)
Signs of reaction to the drug (wheezing, chest tightness, itching, bad cough, swelling of the face, lips, tongue or throat)
New or worsening cough, chest pain, or shortness of breath
Diarrhea or severe abdominal pain, especially right side
Blood in stools or dark stools
Skin or whites of eyes turn yellow
Persistent or unusual headache, extreme weakness, dizziness or fainting, or vision changes.

This morning I experienced blood when cleaning up after #2. Just contacted my onc.

Hi Sharmaine,

Are you experiencing any pain ?
Have you eaten anything “red” in the last 24 hours ?
I’m glad to hear of you contacting your doctor .
Let us know how you are doing .
Love,

EDIT: You know what... might have been the red-skinned sweet potato I ate.

Hi Debbie, thanks for the questions.

Not so much pain as soreness in my abdomen on the right side which I am thinking is linked to a new mass I discovered in the groin area I mentioned in my most recent personal updates https://www.cureasps.org/forum/viewtopi ... 6&start=75
I haven't eaten anything red in the last 24 hours. Apologies for the yucky details: additionally, the stool was not dark. Nor have they been too hard. And admittedly I was only able to examine today's stool in a flash because I flushed too soon. It was only when I wiped that I discovered some blood.

I just received my onc's reply

Are you constipated? If it's just a little after wiping, and you don't have abdominal pain or diarrhea, I wouldn't worry.

Maybe I'm okay, and just a bit paranoid given the new territory of experience.

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 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.

Hi Sharmaine,

Have you had any baseline CT scans of your pelvis performed?

Keppra is quite hard to wean off of ..
You didn't happen to have impact to your pelvic area while on keppra, did you?
Bruising is sometimes a problem while on the med.

Glad you are aware of the issue and communicating with the doc..
They should be running labs with your next infusion as keppra can cause anemia.

I have not had any baseline pelvic CT scans :/
No impact to my pelvis while on keppra. Nor do I have any discoloration on my skin in the area to point to bruising from impact.

Thank you again for the great questions Debbie

Ok this time I had a clear look and definitely a little blood.. stool is looser but I wouldn't categorize it as diarrhea. I'll try my best not to worry, as abdominal pain is not severe.

Symptom management can be so full of doubt with this disease.. discerning what is abnormal enough to arouse concern. It reminds me of when I had headaches in Oct 2019, and when they worsened I thought it was just my first episode of a chronic migraine. When it turned into 2 weeks of straight suffering (headaches, inability to focus, sensitivity to light) and starting to lose appetite yet vomiting and heaving, it was then I was driven to urgent care for a CT and then transferred to the ER because *boom* my first brain tumor. My intuition wasn't the best in that instance. I even brushed off recommendations from family to get myself to the hospital thinking it was just an episode that would resolve itself if I just bear it..
I guess the key is communication with onc and this gracious community to make sure I'm not under- or over-estimating my symptoms.

You need to report this symptom to the dr immediately. Blood in a stool might be a sign of the immune system attacking the lining of the stomach or intestines - Immune checkpoint inhibitor-induced colitis. The color of the blood tells where it is happening, what compartment is affected. It is a serious matter, read this review to get yourself educated and try to figure out if the symptoms look similar to what they say:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6397821/

Thank you Olga. I received a reply from onc:

Colitis is a possible side effect of pembro.
Usually, though, there is diarrhea and abdominal pain. A few drops of blood is not alarming but if the above symptoms develop, please let me know. Unfortunately, if you develop colitis, it would mean almost certainly the end of immunotherapy. So let's see how things evolve and keep an eye.
Please let me know if you need additional information.

While I am feeling a smidge hypervigilant about symptoms, at the same time I am really crossing my fingers keytruda + axi works well for me.

You simply can not be to cautious or to paranoid when the sarcoma progression or drugs side effect signs are suspected. They are so none-specific in the beginning, but the consequences can be so devastating if not caught early, that you simply should not care less re. how you look like in other ppl or even your own eyes. It is almost never a clear cut situation and needs to be investigated, and you never know what you'll find. The bleeding might be also from Axitinib, review the side effects here (they mention "blood in your stools" event to contact your Dr):
http://chemocare.com/chemotherapy/drug- ... tinib.aspx

And this is not given that Pembro will have to be stopped, some other reading for you:
Early introduction of selective immunosuppressive therapy associated with favorable clinical outcomes in patients with immune checkpoint inhibitor-induced colitis
https://pubmed.ncbi.nlm.nih.gov/30940209/

Small update. I had my 3rd infusion on the 16th. I had some rash/hives on my legs since the 15th, although it's unclear if it's due to treatment or stress (I get hives when particularly stressed. Covid depression/anxiety, learning about health insurance, and thinking about the cost of healthcare have been particularly hard.) I treated the hives with hydrocortisone and it no longer bothers me anymore.
Bleeding in stool without diarrhea or abdominal pain paused since my last update and reappeared on the 15th as well, and is still currently happening.