Any Rotterdam regime advice please : Hi ladies... - My Ovacome

My Ovacome

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Any Rotterdam regime advice please

Broader
Broader

Hi ladies

Well, I don’t really know what to say, I hate bringing bad news to the forum but it’s looking like I only have a couple of choices left for treatment paths, I have decided to go for the Rotterdam regime, aka Cisplatin/ Etoposide oncologist explained this is a very harsh treatment but believes I’m strong enough to get through it, it gives me 50% Chance of a good result. I won’t even tell you my other two options as they were pretty poor to say the least.

I’m miffed I will lose my hair for the third time, I’ve only just got a nice covering coming through from the last chemo but hay ho it’s got to be done!

Ct results were reasonable, my pulmonary embolisms have resolved but Omental caking has increased along with ascites hence the chemo to start a week on Thursday.

I’m in hospital for paracentesis today ( it’s 3.20am my mind will not shut off ) I’m not looking forward to it but I know I will feel better when it’s done.

I darn well refuse to give in to this crappy disease.

If anyone has been on the Rotterdam regime and can offer any advice I would be very grateful.

Wishing you all well

Christine x

28 Replies
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Hi Christine, sorry I have no advice I just wanted to wish you well and send you a bug hug. I hope treatment goes well for you. Kathy xx

Hi christine. It breaks my heart to hear this news. I have no idea about this regimen. Stay strong, my dear. I will be praying an added strength and endurance for you. Next time, it will definitely be good news for you.

Hi Christine, I don’t know anything about the drugs . I’m sure someone will be along soon with more information. . The very best of luck with your treatment. I do hope all goes well for you xx

Hi Christine,Hope it all goes well, stay positive and strong that is so important and rest and relax your mind. Good luck and big hugs, we are all here with positive thoughts for you xxx

Hi. I can’t help with the treatment but I know others on here have gone through it. I just want to send hugs and say I hope it wipes out the cancer. Xx

Just did some research and it looks to be a good protocol. Dont fret. You have the backbone to deal with this. A new challenge. Hugs from france

Hi Christine,You are such a brave lady, & I hope by now that you have had the paracentesis done and are feeling somewhat relieved.

I cannot help you with the treatment you are going to have, but wanted to wish you luck with it. Caleda x

Hi Christine, my heart goes out to you. I don’t know what this treatment is about, but I hope and pray that you will be strong and endure this next round. This cancer is hard to endure, but I will pray for you. Keep the faith! Hugs. Donna

Hi Christine. I’m on weekly Cisplatin having run out of other options. My Onc decided not to add Etoposide- not sure why. But means I haven’t lost my hair. I’ve had 3 Cisplatin so far. Too early to tell if it’s helping but it’s manageable (I’m still working 3 days a week though it’s not easy). I’ll keep you posted how I get on. Jane x

Hi Christine Again no help with the regimen but just to wish you luck and send you a big dose of strength xx maybe you should write a blog for the group so we can follow your progress as it seems to be a treatment we dont know so much about? I would be interested to know how it is going for you

Lots of love

Diane

Hi Christine. I don't have any advice regarding this treatment but I just wanted to send my heartfelt wishes that this regime works for you. I think I may be going down the same path as you. I have just finished my last treatment and waiting to hear if the inoxaparin has disbursed the pulmonary embolisms that were found, luckily, during my mid-way scan. I fear my options are now rather limited because of the rare type of OC I have. Please keep us informed of your progress. Praying you will continue to have the same strength and courage you have already shown. 🤗 Jackie x

P S I didn't make the connection that you had already posted that the ascites drainage had failed. Sorry for my inappropriate comment which I have now removed.

Hello Christine.

I am also about to start the Rotterdam regime on the 11th Dec. After anything I’ve had previously has not done the job. Presently in isolation awaiting a Portcath to be fitted so lots of time to think and trying not to be miserable!! Filling my days to stay positive but it’s been a strange year for us all. ( Thank God for GGBO and Masterchef! )

I wish you strength and hope. We will do this. With many good wishes and positive vibes. Berni

Hello fellow Rotterdam RegimerGood idea having the chest port inserted, I had one put in last year, op wasn’t too bad, yak away to the nurse and the time will fly by.

I’m so pleased to have found someone on this Regime, hopefully we can compare notes along the way, I was getting worried !

I’m thinking I might give my lounge a good clean this morning then put my Christmas tree up on Sunday / Monday to try to occupy myself, it’s too early for me really but what the heck, if you can’t beat em join em lol.

Hope all goes well for you today.

Please feel free to message me any time at all, and I sincerely mean that. !

Be brave virtual hugs coming your way.

Christine x

Bernibear
Bernibear in reply to Broader

Thank you so much for this Christine xxx we will stay in touch!!! If you would like my contact details happy to share xxx

Hi Christine, I have no advice to offer about this regime, but wishing you lots of strength and positivity as you start this treatment.

Put that tree up and carry on!

Sending a big hug.

Nicola x

Hi Christine

I am due to start this regime on 3 December. I am platinum resistant and after 3 months on Niraparib was told it wasn’t working and I had new growths.

There doesn’t seem to be much information on the regime so going in quite blind.

I am being treated at Christies - my Onc is great and I have put my trust in him to choose the best treatment.

If it would help to compare notes going forward, I am happy to do so.

Good luck

Liz x

Broader
Broader in reply to Villamartin

That’s brilliant news ( albeit the wrong kind) Yes, would love to share knowledge and tips with you, also Berni bear is about to start the same regime so that’s 3 of us, maybe we could do a what’s app group as I’m sure the guys on here don’t want all the gruesome fact about how we are feeling lol

Let me know how you feel about it ??

I start (unless anything changes) Thursday 3rd December. I’m writing xmas cards for abroad family in case I feel pants lol

Take care

Christine x

Villamartin
Villamartin in reply to Broader

Hi Christine

Good idea - how about “The Rotterdam Girls”?

I have WhatsApp but no idea how to set a group up though!! I presume we will need to swap mobile numbers - can this be done privately?

What do you think?

Take care

Liz x

Sewfarok
Sewfarok in reply to Villamartin

Hello Liz, I do hope that you are doing ok. My friend has just been offered the Rotterdam treatment at Christie’s, her previous treatment ( third round ) failed. I have tried to research this for her but as you all say there is very little information. I have a friend that is a surgeon so I thought I would ask him, he told me that there have been some very good results and would certainly recommend having it, apparently the two guys that devised it received a Nobel award. I would be really grateful if anyone would share their experiences with me so I can help reassure my friend. I wish you all much love x

Villamartin
Villamartin in reply to Sewfarok

Hi SewfarokI was put on the Regime when my previous treatment (second round) failed.

I am half way through the 6 cycles planned. It is a very intense treatment with weekly intravenous chemo and daily tablet. After 3 cycles there is a one week break followed by the next 3 cycles.

Everyone is different but in my case the side effects were tiredness and lack of energy. My white platelets tanked after 3 weeks and I had a very sore mouth and gums, I was an inpatient for a couple of nights on anti biotics and had a blood transfusion on Christmas Eve, I am currently feeling a lot better and ready for the next 3 cycles.

I hope my comments have been of some use, but as you will appreciate, I won't know to what extent until the results of my next scan.

Good luck to your friend.

Liz x

Sewfarok
Sewfarok in reply to Villamartin

Dear Liz, thank you so much for your message. I will pass your information to my friend who is struggling yo decide whether or not to go for the treatment. I am sending much love to you x

Dear Christine, I'm so sorry about this and I send you huge hugs. You'll get through it and will come out the other end in a much better place. There are lots of new treatment regimes in the pipeline so hang on in there and be really kind to yourself. Take care Sue xx

I hope that the paracentesis went well and you are feeling more comfortable. Best of luck with your new treatment.

Broader
Broader in reply to juliamillen

Bless you, no the paracentesis was aborted as they couldn’t get to the fluid, I had a bit of a day but slept like a baby last night lol.I did post but you must of missed it

Christine X

juliamillen
juliamillen in reply to Broader

Sorry to hear that

Hi Christine

Not yet had this treatment but it is on my radar. From what l have read and the papers were a few years old, it is not too bad for most ladies. Think this is frequently used on the continent but not sure all hospitals here have the licences or permissions, I can only find nice guidelines to lung cancer.

Sincere best wishes for a successful outcome. Please keep us updated as to your progress.

Sylvia x

Oh Christine, So glad you found other brave women on or about to start the same regime. Good luck to you all.

Candy x

Yes Candy I am so pleased to be able to chat to bernibear and Villamartin, I’m not alone, it’s such a relief !I was beginning to think my oncologist had made this regime up specially for me lol. Bernibear attends the same hospital as me too so all good.Take care

Christine x

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