uterine serous carcinoma:- maintenance drugs

Hello ,

hello Femke, you have gone though so much and i am sorry to hear about how the you have had a rather bumpy ride with the chemo and it not working as well as hoped. Clinical trials now there is so many really good trails out that that many have gone though and some seem to have been really good. We all know we respond differently to treatment but at the same time if they are offering the trails then they still have hope gor you and want to try and treat you so you can be as comfortable as possible. Although its not easy either and I know its a very difficult decision you need to make but I would definitely look at at all your options available. 

i be honest its a difficult question to answer that you have asked and maybe worth you posting in Ask a Nurse. But I would also write down all your thoughts and questions to ask your oncologist because I feel you need to be fully armed with as much information as possible before you make any decisions, If any of the other ladies have any experience of it they maybe able to share their experiences. 

Sending you a gentle bear hug  

Thank you so much for your advice GBear. I have put my question to the nurse and will follow the rest of your advice. I would like to also wish you a Happy New year. I do seem to remember you from the time in 2018, when Lukem , my son, put a question on the forum on my behalf. You were very helpful then. I hope you are well.

Love Femke

We do what we can Femke, its not an easy situation for you but we all hope we can at least share what we can, the experiences from so many you learn about things all the new medical advances that come into our lives. I do remember Lukem i hope he is well, but i am glad you have been able to reach out i hope you can get all the information you can to aid in your decision. I hope you get a response as quickly as possible from the nurses I know there maybe delays due the time of year but they generally reply within a couple of days. However I am hopeful you will be able to get the information you need. There is also the eve appeal too who are a gynaecology expertise I know I have asked them questions from time to time too. https://eveappeal.org.uk , i hope it helps you. I also wish you a happy new year too. 

Hi Femke,  I am not sure about maintenance drugs for USC. What I can say is that I  had uterine cancer ,but also had serous high grade in one fallopian tube, the latter being the one that returned at the beginning of  2020. I did have 4.5 years after having carbo/taxol in 2016 free of problems. Anyway it was decided that it would be advisable for me to start with carbo/gemsar  (6 cycles) which I completed in  October. This treatment  worked  and my tumour marker went from 532 to 18  which is great. My Oncologist suggested that I try the maintenance drug  Rubraca/Rucaparib  as this lengthens the time between any chemo. This particular drug has been approved over in the UK for I believe over a year now. I started with this 7 weeks after my chemo finished & I am monitored on a monthly basis which is really good. I did have to have the dose reduced & at present I am on a half dose taken on a daily basis. I did have a Consultation via tel. yesterday & my tumour marker has gone down by another 4  which  is pretty good as I have only been on that half dose for 21 days. I hope that things turn around for you in 2021. Try & stay positive. Georgette.x

Dear Ekmef,

I was diagnosed with same stage4B USC June 2020. I am having last chemo next week. I was hoping to get a surgery in the beginning however, the scan showed that it has gone up to my lungs. They also found blood clots in my lungs. So I get injection every day for that cause. Since chemo I’m not getting pain and I also had scan after my 3cycles where my oncologist was happy saying that is has significantly shrinked. I am worried a lot now because chemo is ending and what are they going to offer or what is the next step. 
In the beginning my oncologist discussed about the treatment saying neo adjuvant chemotherapy which has possibilities of surgery if chemo works. Well I’m already disappointed by reading many stories as, beating cancer is kind of impossible and it’s stage 4B. You have gone through a lot. Take care Ekmef

Dear Georgette, thank you so much for your reply. Are Rubraca/Rucaparib not parp inhibitors? I have been tested for the Braca gene, for which I tested negative. I doubt whether I am therefore eligible but I will raise it with my oncologist. Did you get tested for the Braca gene before they put you on those drugs? I am so leased for you that it does show that it has a good effect on your condition. 

Yes, I will stay positive.I do find it sometimes difficult to stay positive and realistic at the same time.. I do meditate regurarly which  helps with my sense of well being.

Again, thank you Georgette and stay well!

Femke

Dear N.Sami

Thank you so much for your reply.Yes, I so do understand your worries. Surgery is such an important part of the treatment. But hopefully they will offer that  you now? But indeed, whatever they suggest , with our advanced stage all treatment is palliative. We only can hope for a reasonably good quality of life for a number of years. It is not easy N.Sami and I so feel for you.  And hoping  somehow that a new wonderdrug could change our outlook. And following the advice of Gbear . 

Love

Femke

Hi,

Yes Rubraca/Rucaparib is a Parp inhibitor. My understanding is that because I had  serous high grade fallopian tube cancer &  I have had the platinum based carboplatin twice then I was eligible for  this parp inhibitor even though I am BRCA  negative.  Regarding the BRCA test, I asked my Oncologist about this prior to starting the last chemo as I have a daughter, that being my reason initially.

I am pleased to hear that you are staying positive.

Take care. Georgette

Dear Georgette.  Thank you very much for that. I will certainly raise this with my oncologist. Keep well!!

Femke

Hi ,

The other thing is that if your cancer is related to estrogen,I believe there are drugs that can be used for this, because when I was still with the Oncologist that dealt with womb cancer only, I was prescribed a drug called  Megace,   in the interim period before a biopsy was done to find out if it was indeed a recurrence of womb  or  Fallopian tube type.

i hope things work out for you, Stay safe.