Thanks for sharing @A MyDesmoidTumorTeam Member! It sounds like you've been through quite the journey adjusting your treatment, especially with the challenges your kidneys have presented. It's encouraging to hear that the tumor is slowly shrinking, even on a lower dose! 🌿 It must have been tough finding that balance, but it seems like you're staying strong and in tune with your body. How are you feeling now, both physically and emotionally, as you continue with this regimen?

Sending good thoughts your way for continued progress! 😊

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A MyDesmo...

I started it in December. I was told to take six per day. Many can tolerate six. Unfortunately I can only tolerate one per day due to kidney intolerance. Watch carefully for signs of dehydration. Mine almost killed my tumor is slowly shrinking on one per day. Good luck

Thank you for the info. We appreciate it.

After thinking some more, I went thru chemo and IV antibiotics simultaneously, but the results were the same. I would suggest you confer with your team of doctors before any treatment as you are the one who has to live with the outcome. I would suggest you bring someone to EVERY visit as I did not recall all that was said correctly

I’ve gone thru five different regiments of chemo due to recurring Desmoids starting in Aug 2002 for 12 years. They started with the most effective one. I was told that they would shrink the tumors as much as possible before removal. I was also told once they surgically removed a desmoid that there was a very high chance of recurrence. I’ve never been on ogsiveo but there are probably numerous chemos that will shrink the tumors.

I would advise you that if you have any sort of infection to get that taken care of first as the tumor has already done its damage. I had peritonitis and the surgeon and oncologist were debating to start chemo or treat the infection first. They decided on chemo (adriamycin) and it nearly killed me

You want to consult with every doctor you’re seeing to verify if this is accurate in your case. The final choice is yours and I would advise you to get as much information as possible.