Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello Sharmaine ,

I certainly would pursue having the bleeding checked out .
ASAP ..
You are still on axitinib ?

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 keytruda at the moment. Sending a message to onc to update him as well.

Any bleeding side effects have to be reported promptly. Let us know what the dr say, if there are any potential bleeding side effects from Axitinib.

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 my hands, and the random hive. Hydrocortisone or benadryl has been enough to relieve them.
- My last brain MRI shows no new growth, the two existing mets are stable and have shrunk! From 6mm to 3.1mm, and 3.5mm to 0.8mm.

Thank you for the update. The scan results are the good indication that the treatment is working - It is a significant shrinkage in the brain mets.
Looks like perhaps your immune system attacks your thyroid. Try to keep the supplement hormones low, with the aim to keep the resulting numbers at the low normal or slightly under levels - it is shown in many cancers that lower thyroid levels are associated with the regression of the tumors i.e. tumors might thrive better on a high thyroid levels in the body.

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 may be musucular-skeletal pains. Onc said the rise in blood pressure is most likely due to the axi. I am currently on Lisinopril for blood pressure. Because my BP readings are normal now, I will resume axi at a lower dose, from 2x a day to 1x a day.
- I had a strange EKG result, it was my first one so they don't have anything to compare it with. Medical staff also took pictures of my heart. I was told if I didn't hear anything back everything should be normal. Haven't heard anything as of late *crossing fingers*
- The groin mass has shown visible growth and is hard to ignore now. There was no pain or soreness until onc and I examined it tactilely while I was in the hospital.
- My next PET scan is next Thursday, on the 12th.

Sharmaine, is there any blood result abnormality that is noticeable? I expect that you are getting the extended blood work incl. electrolytes and hormones every time before of the immunotherapy treatment? Do you still have any thyroid problems? High pressure can be the side effect of the abnormality or none-physiological replacement when you are getting to much from the pills.
In general high blood pressure is a common side effects of KEYTRUDA when given with axitinib, but what worries me is the approach that is used by many oncologists when the underlying reason is not investigated. In Ivan case, it was a low postural blood pressure and the high potassium was discovered later and the attempt to simply correct the abnormality was undertaken, removing an excess potassium by meds. Body have its own way in removing and re-balancing the essential minerals, it is very tightly regulated trough the endocrine system and if here is an excess or lack of them, there might be something going on with it, or with the autoimmunity. I am very opposed to the rules allowing big pharma to report the side effects on a symptoms basis without the elucidating the reason for the symptoms. It is much more work for them of course but would allow for earlier detection the deeper problem and potentially fixing it.
Re. some separate met seemingly not responding to the regiment while other ones are shrinking - it is not a rare occasion and the one none-reposnding should be reported and may be removed surgically or cryoablated? Ask for the consultation with Dr.Suh may be?

Hi Sharmaine
I’m so sorry for your scare.

What dose of thyroid Med are you on?
On week ? From beginning dose ?

Glad you got a baseline EKG..
I bet if you haven’t got a call back , all is good .
Call though to double check .

Do you have a family history of RA and or arthritis ?

Hope you are feeling better today .
Keep checking that bp,😏.

Hugs,

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 assuming the levels are stable.

I do have a family history of arthritis.

Hi Sharmaine
You are having metabolic labs performed with each infusion ? To know your thyroid levels ?