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Anyone taking Romvimza for TGCT?

Posted by fancynance @fancynance, Mar 27 8:26am

Hi there, checking to see what others on Romvimza for TGCT are experiencing.

My diffuse tumor in my pelvic-hip area was surgically removed after being on Turalio over 2 years but when it came back last May I started taking 30mg Romvimza twice a week which was new then.

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fancynance | @fancynance | Mar 29 2:59pm

Oh I'm so sorry, it's tenosynovial giant cell tumor. You can have diffuse or localized, often in a joint like the knee. Diffuse, which i have had an 80%chance of recurrence which mine did less than 2 years after surgically removing it.
It can be very hard to get these diagnosed correctly as they are rare and aggressive. I am grateful that there are medications to shrink the tumors as that is a fairly recent development.
I hope this is helpful and thank you for asking.

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li4040 | @li4040 | Jun 2 6:28pm

Hi,
I hope that you're doing well.
I was just wondering if you had any serious or concerning side effects from Romvimza? I have a 2nd TGCT in my left shoulder that is too risky to operate on to remove it, because it is pressing into the axillary nerve.
I have multiple health issues and I am concerned about side affects from this drug, but I am grateful to not have to take Turalio. I just wondered if it caused any bad side effects for you.
Thank you. I look forward to hearing from you if you see my message. : )
Liane

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fancynance | @fancynance | Jun 2 7:02pm
In reply to @li4040 "Hi, I hope that you're doing well. I was just wondering if you had any serious..." + (show)
Profile picture for li4040 @li4040

Hi,
I hope that you're doing well.
I was just wondering if you had any serious or concerning side effects from Romvimza? I have a 2nd TGCT in my left shoulder that is too risky to operate on to remove it, because it is pressing into the axillary nerve.
I have multiple health issues and I am concerned about side affects from this drug, but I am grateful to not have to take Turalio. I just wondered if it caused any bad side effects for you.
Thank you. I look forward to hearing from you if you see my message. : )
Liane

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@li4040 Hi there, I'm sorry to hear that. Do you have diffuse TGCT? Mine was too large for surgical removal initially but Turalio for over a year shrunk it well enough but it came back 1 1/2 years later.
On the Romvimza for a year and you only take it twice a week which is nice aces they now have 3 different dose sizes, i was on the max 30mg and it get the tumor to shrink a little, it's small.

Side effects came on gradually. Still have to watch the liver enzymes but i did get the swelling around my eyes which was tolerable. The fatigue makes it hard to do anything after working a full day. My cholesterol went up for the first time in my life but it wasn't being monitored and i wound up needing my gallbladder removed so please be sure your doctor watches for that as it is controllable but my doctor dismissed that and the pain i was having.
I am grateful the drug is available so we can keep our tumors from increasing but i should have pushed more and advocated for myself better.
It is very effective medication and i probably should have been placed on a lower dose like 15mg due to the side effects but i didn't know that was an option until recently.
Please let me know how you do as i found this easier than Turalio's side effects.
I recently got a2nd opinion at Mayo Clinic and the doctor wants to see my recent scan to see if radiation might be an option.
I hope your tgct journey leads you to eliminating your tumor. 🙂
All the best, Nancy

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