Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Currently i'm on 50 MCG of Levothyroxine, 1 tablet daily. I don't notice much thyroid symptoms.. And in regards to tests, it was just those two times my onc reached out to tell me my thyroid levels were low. I've been taking the levothyroxine every day, and haven't heard back from onc so I'm assumin...

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 m...

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 ...

Thank you Olga for your insights. Another update: - I was admitted to the hospital for hypertensive crisis Oct 31-Nov 4. I was experiencing headaches responsive to Tylenol and fast heartbeat. Any chest pain wasn't visual on the equipment at the hospital (tele-something?), so nurses suggested they ma...

Update: - No blood in stool since 10/11. - My labs reflected low thyroid, so my onc is prescribing a low dose medication that I will pick up today after my 5th infusion. I will take this long-term and the dose should increase in time. - I have occassional small swellings in my fingers, itchiness in ...

Making a note about blood in stool: I've been consistent with axi until 9/23 where I missed one dose of axi. The next morning, there was no blood in stool. Got back on schedule immediately, and blood resumed the next morning. So presumably, blood in stool may be moreso due to axi rather than keytrud...

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 hav...

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,...

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 cer...

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 concer...

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

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...

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://w...

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...

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.