Disappointed

[Gramdma27]

I was diagnosed with Stage III Carcinosarcoma in July 2021. After surgery and debulking I completed 6 rounds of chemo. After, I had a CT scan. The oncologist said he couldn't determine if what showed on the scan was scar tissue or the cancer. He even said he would say I was in remission. I was prescribed Niraparib. I was not able to take it the normal way. Stopping.and starting due to low platelet counts. I am on 100mg now.

CT scan was done 6 months after chemo and Niraparib was prescribef and the results showed new findings.

I'm so disappointed. I have follow-up with the oncologist Thursday. This is not to discourage anyone regarding taking Niraparib, I just had to share my experience.

[Grankidsxxx]

I'm in the exactly same position as you! All we can do is keep fighting. Good luck 🍀🍀❤

[Lind58]

What is your ca125?

[Gramdma27 in reply to Lind58]

My oncologist has not order a CA125 test since starting Niraparib in April. I enquired about the test and he didn't seem concerned.

[WFBCC in reply to Gramdma27]

I'm sorry for what you're going through. Did he do a CA125 after the inconclusive CT results? If not, I would encourage you to insist on a CA125. It's a simple test and, while it doesn't answer all questions, it's certainly a worthwhile marker. If he is still against it, I'd suggest looking for a different oncologist. Remember, it's your life!

[Gramdma27 in reply to WFBCC]

He did CA125 after CT scan. It was 7.5. That was in May. Scan was done in March.But I feel the interruptions in taking Niraparib must have had some affect.

I know my type of cancer is aggressive, so I guess it should be expected.

My issue is my oncologist never explains things. Sure, I am to be my own advocate, but he just seems to be dismissive. I have been his patient for almost 7 years. Monitoring after breast cancer treatment in 2014.

I wish now, looking back. I would have continued seeing the gyn/ oncologist that performed surgery.

I didn't want to travel to the next town. There a few times I had to have someone pick me up after treatment because I was not able to drive home.

Did not want to inconvenience anyone.

[Nanfoster in reply to Gramdma27]

You can always change doctors. That’s important! It would I would do, no reason night to if you like the other doctor plus he has your history. Best to you.

[Catcher910 in reply to Gramdma27]

I think your idea of returning to your GYN/ONC is wise. If you're getting vibes of disinterest and dismissiveness from your current doctor, don't ignore that. Women, especially if you're older like I am, are often treated with less interest by some doctors. If transportation is an issue, you can ask for help from the American Cancer Society, friends, relatives, neighbors, your church. Many people would love to help others but are never asked. If you can, offer to reimburse for gas or offer to buy lunch or breakfast.

[Heidels in reply to Gramdma27]

i get blood tests every 2 months..Ca 125 is one of them. I get scanned every 3 months...I take Naraparib and have for over a year now and so far, so good. I have been NED for almost 2 years now since chemo and surgery was done. The blood work is important to get done .

[Gramdma27 in reply to Heidels]

That's great to hear you're having good results with Niraparib.

[Nanfoster in reply to Gramdma27]

My doctor prescribed that I get tested monthly CA125. Yes I feel it’s important because you can compare with you baseline. It gives some guidance, not an absolute but it’s important to me to get tested.

[lovemy3dogs in reply to Lind58]

Not all people have a change in their CA-125. My oncologist said he has patients who's numbers never went above normal and then some like me who's numbers were very high. (Mine was over 4000 when I was diagnosed) If your numbers are sensitive, it is a good marker. If not, a CAT scan is your best option. I have been on Lynparza for almost two years. I go monthly for blood work, including a CA-125. My doctor suggested still having my CA_125 tested about every 3 months after going off the Lynparza as it will be an early indication of something going on. Parb inhibitors work best on people who are BRCA positive.

[Gramdma27 in reply to lovemy3dogs]

I tested negative for BRACA.Since being on Niraparib I have seen more people positive.

[WFBCC]

My gyn/onc is about 30 miles one way from me. I had 2 more chemos to do when the American Cancer Society stopped it's free Uber/Lyft ride program during COVID. I was frantic but also determined to find transportation. A woman I knew who was an Uber driver stepped up to help me with the final two chemos. I don't know what I would have done without her. I was able to get her 2 gas cards through a program at my hospital cancer center.

Since your gyn/onc is a doctor you like and feel comfortable with, please do all you can to make the switch. Keep stress low whenever possible.

Do a web search under American Cancer Society free cancer rides. Other options will probably come up too. Or call the Cancer Society. Maybe your church can help with transportation. Talk with your gyn/onc's office about programs. Others on this site might have additional thoughts. Don't settle and don't give up!

I'm now in the Cancer Center's Survivorship program and go every 3 months. But now I drive the 30 miles myself!

[Gramdma27]

You certainly were blessed to have someone to help.

[Sorid]

I have been in remission for 2 1/2 years from stage 4ovarian and uterine cancer 🐡🐡🐡🐡🐡🐡🐡🐡🐡after surgery, chemo and radiation…..my doctor was supportive and was well worth the travel time to go to him.If you are not having a good relationship with your doc and can switch ….do so right now to make the journey easier to endure!!!It’s tough enough already,let alone feeling like he/she is preoccupied.I find that what may work for me ,may or may not work for anyone else.I never got diarrhea’s grip or vomiting..but l had horrific “growing pains” in my legs from meds and neuropathy that still is with me.😞.l just kept reading all l could.As to transportation

If you ask anyone…Free Craigslist ride needed … a church, a hospital, volunteers are everywhere that would help you get to your appointments .Helpers are everywhere, all you have to do …is ask and we will be there

[Lou_UK]

I’m on Rucaparib too after diagnosis stage 3 chemo, debulking, Avastin and after being in remission for six months, I had recurrence in lymph nodes, more chemo and now on Rucaparib. I’ve found that if I’m open with people about my situation people are very happy to help. I’ve found my church community extremely supportive and remember it’s ok to accept help as many people love to help ❤️

[Salavie]

Isn’t another name for that drug you were taking is Zejula? Did not work for me either

[Gramdma27 in reply to Salavie]

Yes. Brand is Zejula. Don't know why it doesn't work for some.