New drug approved by the FDA in November.

[MOOKIE-FOX1234]

Just wanted to post that a new drug in the battle against ovarian cancer has been approved by the FDA under the name Elahere . My terrific oncologist discussed it with me l during my last appointment. As always , there is a catch , it is based on your having a certain protein present for it to work . Since. I have an inoperable tumor pressing on my urethra, if a candidate the drug would be injected directly into the said tumor .I went off chemo several months ago , I prefer to go with quality of life since I am heading towards 79 . I have been receiving immunotherapy every three weeks and last week my oncologist said that all my labs etc. were stable and I wasn't going anywhere .

I try and just kick the can down the road everyday, and keep plodding on , my philosophy is , Worry is like a rocking.chair it keeps you going , but doesn't get you anywhere!!

Since this drug is so new and data is still being collected on it , it is yet another weapon that may benefit anyone of you sooner or later . Chin up ladies , there are some brilliant scientists out there working on our behalf .

Hope your day went well !

Gillian, Mookie Fox

[Montelbano]

Hello, I'm 80, live in France. But am English. Completely understand your ' quality of life' statement.I've had ovarian cancer for five years, and my oncologist has thrown everything at it. Have just started on Alkeran.

Had given up chemo for a while, but decided to try again, as I don't want to leave my husband alone. Been married 50 years.

On 4th day, so far so good.

The very best wishes to you.

Ann.

[MOOKIE-FOX1234 in reply to Montelbano]

I understand completely, I have a long term partner , my husband died from too much chemo fighting non Hodgkins lymphoma when he was 61 . My goal is to reach 80, don't want to miss a big party .!! I guess in the scheme of things we are lucky , there so so many younger women who are diagnosed and they have young children.

I hope this Alkeran works for you, very best wishes from an expat living in the US.

Gillian, Mookie Fox 🦊

[Kjpip]

I love your worry is like a rocking chair quote, I will remember that and tell it to myself next time my mind goes spinning off on one of those worry wormholes! Good luck, I hope you're eligible for the new drug xx

[Sunset9]

would you mind sharing the name of immunotherapy that put you in bed? Thank you

[Sunset9 in reply to Sunset9]

Sorry, I meant Ned, not bed.

[MOOKIE-FOX1234 in reply to Sunset9]

It is Keyruda , I am not NED. On it , but it seems to have slowed down tumor progression and has kept my blood work and kidney function stable .It is used against breast and lung cancer etc . All the best .Gillian. Mookie fox 🦊

[Sunset9 in reply to MOOKIE-FOX1234]

thank you

[MOOKIE-FOX1234 in reply to Sunset9]

I should add that I take it in conjuction with a lower dose of lynparza. Gillian ,Mookie Fox 🦊

[Summergold2 in reply to Sunset9]

good to see you are on this site still. Well the cancer has progressed so far in one month they are trying Keytruda Avastin and pill cytotoxan…in three weeks my ca 125 went from 24 to 199. Three lesions on my liver, multiple lymph nodes in abdomen and tumor covering urater on right side so kidney cannot drain . They inserted a tube that drains into a bag. So devastating, hoping this will at least keep it where it is if not I have 3 to 6 months. Have no idea what I can do next every time it gets stronger I am losing my resolve…

How is your treatment going?

Debbie

[Sunset9 in reply to Summergold2]

I am very very sorry to hear that. At City of Hope, didn’t they find a trial for you? I myself isn’t doing well either; my tumor invaded the rectum, which caused a huge hemorrhage on one weekend. It is no longer hemorrhaging, which is good. So, I am no longer on Mersana trial, and waiting to get my folate receptor test, which should come out soon. But, people develop resistance to it after ~8mon, so I need to find a different trial to join. Better options are utilizing your immune cells, so I am searching and waiting. If everything fails, I will also face similar situation as you do. Death is always on my mind, I am thinking of preparing my will, and clearing my stuff at home. It is a real tough form of cancer, isn’t it? Send me a note or an email anytime. We will all be there, and it is a matter of time.

[Summergold2 in reply to Sunset9]

have you done what is called a Caris test? I am heading to City of Hope Tuesday and am "hoping" for something that will help. Planning for death is so very difficult when you are not ready to leave even though you have tried to prepare for it. Had the doctors listened to my pleas of how aggressive this was I very well might not have this bag in and at least enjoy my last months swimming and riding. it is so demoralizing and disgusting. I really hate this disease, I feel I have the perfect cancer that nothing can kill or control. No mutations, no genetic defects no hormones ........no folate changes nothing. I shouldn't complain as I have the best husband and support of friends. I have had a wonderful life but thought at least I would be in my 70's or 80s no cancer in my family until 80 and my mother is still alive at 82. I think we all feel so cheated and so much is given to breast cancer and really nothing to ovarian. if I had known about ca 125 I would have been demanding it when I was 55. Yes I know everyone says its not reliable.......really??? Well if you get a false positive then you follow up until you find out right? False negative well doctors are off the hook. Why don't they give you an option to pay for it your self its a simple blood test that would have saved my life. They found cancer cells in my urine but dismissed it ........thought initially I had meyelonoma did full skeleton x ray light chain blood test and nothing else 2 years later stage 4 Ovarian. If they would have done due diligence in educating me about ALL cancers I should be aware of and tests that could be done I would have! And probably found this at 1 or 2.

Sorry for the rant I am usually so positive and such a fighter just frustrating how little we know about this disease.

Thank you for listening I do hope they will find something I will let you know what my City of Hope appt goes

[Sunset9 in reply to Summergold2]

So good to hear from you. I think we have a right to complain. I don't know if you saw the news: doctors are suggesting that everybody has their fallopian tubes removed after they are done with child delivery, since ovarian cancer with no cure originates from fallopian tubes. Wish I knew that earlier!

I had my tumor sequenced by Foundation Medicine, but it was for well known genes, such as p53 and BRCA genes. The results also said that my tumor had chromosome abnormalities. Caris test appears to be unbiased methods of finding mutations and abnormalities. I will ask my oncologist when I see her next Fri: Thank you for the info.

Sunset9

[Summergold2 in reply to Sunset9]

Yes I did hear about the removal of the Fallopian tubes wish I knew that too. It should be covered by insurance if you so choose. My test came back stating that Keytruda should help possibly with keeping it in check. It is very easy infusion so far I have another on March 1 with Avastin and I am taking cytoxsin(pill) daily. Hoping to be able to double the cytoxin if possible. I will let you know if I am qualified for any trials and what they are. I am hoping more information about this dreaded disease which is way more untreatable than breast cancer and certainly rarely an early detection is brought forth. Hardly anyone knows teal and September are the colors and months of ovarian cancer and what symptoms are! Fight on !

[Sashay2020 in reply to Summergold2]

So glad you are able to try a new combination of treatment agents, Debbie. I hope you have positive results and that you are feeling well enough to enjoy time with your wonderful husband, your lovely daughter, and all the people you hold dear. Lots of hugs! 🤗

Sashay

[Reksio77 in reply to MOOKIE-FOX1234]

Have you had a genetic test for so called " microsatellite instability high (MSI-H)", which makes Keytruda working?

[MOOKIE-FOX1234 in reply to Reksio77]

I had genetic testing when I was first diagnosed. I am taking it in conjuction of a lower dose of lynparza. Gillian Mookie Fox 🦊

[SopSinger]

What is the name of the drug? This is a UK based group, so we don't know when (or even whether) it will be approved here, but it would be useful to keep an eye out for it.

[delia2 in reply to SopSinger]

I think it’s mirvetuxumab and it works on folate receptors with excellent results. I think it’s been trialked in the UK and people on this forum have been on it. Also the trial was only for platinum resistant people.

[MOOKIE-FOX1234 in reply to SopSinger]

The drug is Elahere and my understanding is that a certain protein has to be present for it to be effective. My doctor is going to find out exactly what is required to qualify .It has been developed by a smaller laboratory in Massachusetts.

[SopSinger in reply to MOOKIE-FOX1234]

Sadly it looks as if it's been suspended in the UK. nice.org.uk/guidance/indeve...

[Reksio77 in reply to MOOKIE-FOX1234]

Patients who are illegible to this drug must have a positive response of so called FR-alpha receptor, which is a case in 80% of patients with advanced OC.

[MOOKIE-FOX1234 in reply to Reksio77]

Thank you Reksio77 for your reply . , My doctor did a lot of testing etc.when I was first diagnosed . So she will have all of those results to see if I qualify .Gillian, Mookie Fox 🦊

[SopSinger]

Thank you.

[OvacomeSupport Partner My Ovacome Team]

Hello All

This is just to let you know this treatment is currently being researched in the UK through the MIRASOL trial, details here: clinicaltrials.gov/ct2/show...

It's fully recruited to so hopefully this will mean some encouraging results are available soon.

I hope this is helpful. Please do get in touch with us if you have any queries.

Best wishes

Anna

Ovacome Support

[MOOKIE-FOX1234 in reply to OvacomeSupport]

Thank you Overcome Support , I truly hope that it may become another tool that can be used to fight this disease .

[win_56 in reply to OvacomeSupport]

Well that's a positive step.

[Nov5]

Hi Mookie-fox,

Thanks for sharing the info and your progress on the immunotherapy looks promising. Really hope this works in maintaining your quality of life and you can enjoy your 'big party'.

Love your philosophy too.

Keep kicking that can. XX 🌹

[MOOKIE-FOX1234 in reply to Nov5]

Thank you , Nov5th I appreciate your reply .We all have to keep plugging along with our fingers crossed 🤞. I am not as proactive and as knowledgeable as many ladies on this forum. I have known my oncologist for many years, she also grew up with my GP , so I leave the decisions to the big guns and just carry on . I really hope that they find a way to help the younger women who have their lives ahead of them .All the very best to you !

Gillian, Mookie Fox 🦊

[PaumicB123]

Thankyou for your information

[COHEN123]

That's great news and brilliant attitude . Keep on going