Is wait and see acceptable

[Chicago59]

I am just finishing round 5 of chemo, carbi/taxol, after a full hysterectomy in March 2021. High grade 2. Doctor says after 6 rounds I will go on blood test monitoring every two months. Is this usual or should I push to be started on a parp inhibitor and I thought initially I might get more regular blood test than two months. I have booked a holiday to Mauritius at Christmas with my family so I’m hoping I have some hair growth by then . I am happy with my oncologist but I’m not very good at asking for what I want.wait and see just seems so worrying.

[Katmal-UK]

Hi, sounds pretty standard to me, I went onto blood tests every 3 months then after a couple of years 6 monthly though by all means it’s worth asking about whether you would be eligible for a parp. I wish you well and hope you enjoy your Christmas in Mauritius xx Kathy xx

[soyoon]

I think it is a very good idea to ask about PARP inhibitor, when you are still platinum sensitive. My experience has been that they tend to follow standard regimen, and you need to take charge of your own treatment by asking about different options. The goal is to avoid recurrence, so PARP inhibitor sounds like a good option to consider. I suggest you study the various treatment options yourself as much as you can and get yourself armed up with current knowledge in OC care. FYI, I was also diagnosed at stage IIA, but it came back after 2 years. Now I am on a clinical trial, which is working.

[Summergold2 in reply to soyoon]

Can I ask which clinical trial you are on please?

[soyoon in reply to Summergold2]

It is REGN4018 by Regeneron (ClinicalTrials.gov Identifier: NCT03564340). You could have monotherapy with only REGN4018 or dual-therapy with PD-1 antibody (Cemiplimab by Regeneron), and I chose REGN4018 plus Cemiplimab. Briefly, REGN4018 is called a bi-specific antibody, because one arm of the antibody binds the tumor antigen and the other arm of the antibody binds and activates your own immune T cells (our antibodies are shaped Y, where two arms are V shaped part of the antibody). Thus, when the REGN4018 binds the tumor antigen on OC, it could brings activated T cells to the tumor, fighting tumors off. My tumor has shrunken ~20% since the treatment, which has been ~ 2 months. The trial has ~ 9 sites, one of which is in Belgium. Most are in the US. Please let me know if you want to know more. An advantage of this trail is that the side effect is very minor with no fatigue to speak of. Let me know if you want more information.

[Summergold2 in reply to soyoon]

I would love to have more information can I private message you with my email I am in Calif. San Diego.............Stage 3c finishing second line treatment platinum sensitive and told in remission after CT scan after 3 chemo Doxil/Carbo.....never been on Parp do not have active tumor but cancer is detected in blood. Also braca neg and high grade serous diagnosed 2019 debunking blah blah blah. Also 18 rounds of Avastin reoccur in May 2021 though I know it was sooner just a feeling. Other than OC very healthy .......if that is possible LOL

[soyoon in reply to Summergold2]

Please do. I don't know how we exchange email addresses without announcing it.

[Summergold2 in reply to soyoon]

I sent you my email go to the top of the page and where it says members click on that type in my name Summergold2 and it will show me and should show my message also I put in following you

[Summergold2 in reply to soyoon]

let me know if you have any issues

[Jacky5]

HiWell done on getting through your chemo.

You must be so glad it's coming to an end but understandably anxious at the thought of watch and wait.

I think your doctor will have to follow NICE clinical guidelines.

You can check out the treatment options using the flowchart on the NICE website.

Have you had a brca test yet?

That result will affect your treatment plan.

I think 2 monthly bloods sounds reasonable. From what I have read here bloods can fluctuate over a period of months naturally.

There is a very good article about coping with anxiety after treatment has ended.

I'll see if I can find it and post a link.

Liz xx

[Jacky5]

Here is the link to the article about coping after treatment finishes...hopefully.

workingwithcancer.co.uk/wp-...

Here is a link to the NICE interactive flow chart.

pathways.nice.org.uk/pathwa...

All the very best to you.

Liz

[Why4300 in reply to Jacky5]

Wow, the article on coping after treatment is just outstanding! It was like a bright light for me this morning! I am sending it to my family and to several cancer patient friends.

[Jacky5 in reply to Why4300]

Oh I'm really pleased you've found it helpful.Someone posted a link to it here some time ago, it just explains everything so well.

It's a really good way of giving friends and family insight too.

Liz

[Chicago59]

Thank you very useful

[OvacomeSupport Partner My Ovacome Team]

Hi Chicago59,

I can see that you have already received a number of informative and supportive responses from members of the forum. I’m sorry to read how worried you are feeling. You may wish to contact your clinical team to discuss your concerns about your follow up and your treatment so that they can give you information about this based on your individual situation. We are here if you would like to talk things through first. We can help you to explore what you might like to say and what questions you might like to ask. You can contact Ovacome on 0800 008 7054 or by email at [e-mail].

We also have a webinar that you may be interested in. It is called ‘Managing anxiety after treatment ends and coping with the fear of recurrence’. I will put a link to it here: ovacome.org.uk/looking-afte...

Please don’t hesitate to get in touch if you would like to talk things through.

Best wishes,

Cathryn

Ovacome Support Services

[Why4300]

Hello Chicago from northern Virginia! When I finished six chemo treatments plus surgery for Stage 3 high grade serous carcinoma in early 2020 my doctor recommended Avastin as a "maintenance treatment." I had not had Avastin as part of my preceding chemo -- carboplatin and docetaxel. After just two Avastin treatments Covid hit hard and we agreed that the risk of my coming in every 3 weeks for Avastin was greater than the benefits. So I was effectively switched to "watch and wait." I had lab work (including CA 125 test) every 3 months and a video visit with my oncology team. Rising CA 125 numbers in late November alerted us to the possibility that the cancer was back -- just 11 months after I had finished my first round of chemo -- and scans in January confirmed it. I started a new chemo cycle in February. The new chemo included Avastin along with the two drugs I had received before. Following my 5th treatment in May, I switched to Avastin only every three weeks. Both scans and CA 125 tests since then have looked very good. I know PARP inhibitors are out there as a possible future treatment for me when the cancer returns but I don't have the sense that they are used as maintenance medication like Avastin. I'd suggest you check with your doc about Avastin. You do have to watch your blood pressure when you are on it and it has some side effects (nasal congestion, muscle and bone aches for me) but nothing as debilitating as what you faced in regular chemo. Take care! I see a lovely vacation in your future!

[delia2]

Hi. I didn’t review the NICE guidelines but I suspect the fact that you are stage 2 is the reason you’re not being offered maintenance. I didn’t have maintenance (stage 3b) and was glad to have the chance to rebuild my strength though I relapsed after 9 months. It is a difficult adjustment to go from treatment to being on your own but also nice to just live your life. Your holiday plans sound wonderful! Xx