Not The News I was Hoping for..................

............Had my clinic appointment today with CT scan results and Niraparib has not worked for me, the scan shows extensive progression, and quite a few enlarged lymph nodes all over, also liver, bowel and peritoneum nodules. Plural infusions and lung nodules. To say I am devastated is an understatement! I was asked today in clinic if I wanted to talk "life expectancy" which also shook me to my bones! I said no as I couldn't think of a really good reason of knowing when I was going to die. The plan is to stop Niraparib and try Carbo and Gemzar, if any of you have any experience of Gemzar I would be grateful if you can share with me. Thank you x

[Coldethyl]

So very sorry to read this - hard at anytime but I imagine even harder when all the usual distraction and support mechanisms unavailable - I’m assuming Gemzar is gemcitabine and a friend has had that twice as second and third line and showed good response though of course the remissions weren’t as long as her initial one. Are there any trials that you would be eligible for though I know recruitment at minute very hit and miss ?

Knowing your life expectancy is a double edged sword and really it’s up to you as what will you do differently if you have a date stamp? As long as you have your financial affairs and end of life wishes in place ( which we all should have cancer or no ) then I’m a believer in just ploughing on ignoring reality - wishing you all the best x

[Hidden in reply to Coldethyl]

Hi - I haven't asked about clinical trials at the moment, but its not ruled out for the future once I have exhausted all other options. I was hoping to get onto the ICON 9 trial before I started Niraparib, had all the tests over several weeks, told yes then no then yes and finally no you don't qualify, has put me off as I found it extremely stressful, and I am stressed beyond belief already. xx

[Lyndy]

God this is a challenging path indeed Lyn. I have also been having similar discussions , which given that I am yet to start second line is not in the least what I wanted to hear. I have said all along I want the chance, I am not ready to quit.

Ok so the niraparib didn’t work for you but this chemo could give you a better outcome because the cancer has had a field day while you were on the Parp. I think we have to be positive with ourselves and them.

I am not stupid, I know they won’t ventilate me or offer me dialysis if my kidneys pack up, but a little faith might be welcome xx

[Hidden in reply to Lyndy]

Thnak you Lyndy, sorry for the slow reply, been a bit down these last few days. How are you progressing with treatment for your pleural effusion?

[delia2]

Hi Lynn. WOW. Really not what you wanted to hear! The results really stink and you have every reason to take a bit of time to wallow but you will quickly start focusing on the next steps. You've still got more than one chemo option and trials. It's good that they're still giving you carbo with the Gemzar and you haven't had weekly taxol yet either. I follow you closely because you're just a few months ahead of me . I've just been on Olaparib for a couple of weeks after finishing Caelyx and carbo. It's a sorry situation to welcome chemo but there's no reason it won't work for you. Hang in there. xo

[Katmal-UK]

Hi Lyn, sorry to hear yr news, having said that Ive had carbo /gem and also cisplstin/gem and both times it put me into remission. As for talking life expectancy I was told right at the beginning 'a couple of years'. Well, still here! As long as you can receive treatment then the fight goes on! Big hug, Kathy xx

[Hidden in reply to Katmal-UK]

Thank you Kathy - Usually when ever I need a positive vibe I think of you, but for some reason I can't dig myself out of this black hole I have fallen into, I know I will eventually get my mojo back, but at the moment it seems a constant uphill struggle. x

[Katmal-UK in reply to Hidden]

You will Lyn, brighter days will hopefully follow xx big hug xx

[Lindaura]

Dear Lyn,

What devastating news!

But at least you have a plan and it is the same as mine!

I start on 15 of May.

This combo has worked for many of our ladies, so we have to think to let it work for us, too!

We’ll think about the future later, when we can explore trials, etc.

Remaining hopeful and attacking your disease right away will lift your spirits.

Now I just wonder how the side effects will be...

Keep up the fight!

Hugs,

Laura

[Hidden in reply to Lindaura]

Thank you Laura, I start on the 14th. Fingers crossed this regime works for both of us. Hope your keeping well. x

[Gemimablackvelvet in reply to Hidden]

So sorry to hear this news Lyn but at least there’s more hope for you starting with this new treatment which works for so many people.

I won’t discuss life expectancy either. I started on Niraparib some weeks ago but only managed 2 weeks as my platelets dropped to 9 resulting in a blood transfusion. I’ve now started Rucaparib which is suiting me better but I have no idea if it’s working as I won’t be having a scan unless I develop symptoms.

I hope to God your chemo works.

Love to you

Angela xxx

[Hidden in reply to Gemimablackvelvet]

Thank you - Do ask for a CTscan after 3 cycles, as you need to know if its working sooner rather than later, I didn't get any symptoms, but did have a rising CA, fingers crossed for your treatment. Good Luck x

[Hidden in reply to Lindaura]

Well done, Laura! You are absolutely super! A mighty woman! 🤗🤗🤗🤗🤗

[Caleda4]

Hi Lyn,

I am so sorry that you are in this position, & understand how devastated you must feel. Unfortunately I don't have any experience of Carbo/Gemza, but I hope that this works for you. It was very insensitive of the clinician,to ask you about "life expectancy",especially when you have just been given the news you were given regarding the Niraparib.

I don't know where you live,but would it be an idea to get a 2nd opinion,say from the Royal Marsden. I did think of doing this myself depending which way things went. You can fill in an online form if you did want to go down this route.

Take care. Caledaxx

[Hidden in reply to Caleda4]

Thank you Caleda, I am at the Marsden already. I know I am in good hands, if not a little brutal at times. x

[jools53]

Have you thought about fenbenzole! Or COC for some alternatives to help, worth a try ! 😘😘

[Hidden in reply to jools53]

Yes I was talking about COC today to my husband who is keen for me to go and see them. I had to look fenbenzole up - it says its a worm treatment for animals??

[jools53]

Had a consultation on line £400 and a prescription sent out ready for me ! Got to pay £190 ish got nothing to loose! Also Jane mc elland on fb , worth joining lots of more info! I’m 5yrs braca neg high ca still feel alive! Albeit pain and bowel problems hospital, clinics, research! Keep going girl! Xx

[bluepeterella in reply to jools53]

Yes another shout for COC. I decided to stick with my COC drugs and other supplements rather than Niraparib after first recurrence, and so far so good 10 months on. They are lovely and positive to talk to as well x

[jools53 in reply to bluepeterella]

Fantastic 👍🏻🙏🙏🙏

[Hidden in reply to bluepeterella]

Hi - have they scanned you at all during your 10 months, which is fabulous by the way.

[Hidden in reply to bluepeterella]

are you BRCA positive? sorry for all the questions, trying to decide what to do next?

[bluepeterella in reply to Hidden]

No I’m brca negative and no scans. CA125 has been a good indicator for me so far. No problem asking questions, the more information you gather the better x

[Hidden in reply to bluepeterella]

Thank you, your info has helped me a lot. x

[Lovedogs41]

Hi there.As a newbie to all this,what is COC please? X

[jools53 in reply to Lovedogs41]

Care oncology clinic Harley street x

[Lovedogs41 in reply to jools53]

Thankyou,will have a look into that.x

[SUE7777]

Hi Lyn,

I'm really sorry to hear your news. I am also BRCA negative and I know the parp inhibitors don't tend to work on us so well, but there are many other things Keytruda for example. Your oncologist was very insensitive to talk to you like that! What's the matter with these people. I think chemo tends to be the best option for us.

Take care and all the very best

Sue xx

[Hidden in reply to SUE7777]

Interesting thank you, I asked at my appointment about immunotherapy, as I have read some interesting articles recently involving T cells. They said it was a possibility in the future but they need to test my original tumour for oestrogen. At least I think that's what she said, so hard to remember everything when you have to go on your own.

[SUE7777 in reply to Hidden]

Hi Lyn,

Car T-Cell therapy which is tailored to the individual is being trialled in the States at the moment and won't be ready in this Country for 5 to 10 years for our type of Cancer, but they are having fantastic results with the blood cancers for some people complete cure when they were terminal. They do give people in the States tailor made Immunatherapy called TIL (tumour infultrating lymphocoytes) with a 10% -15% success rate.

The problem with chemo is the body becomes resistant to it if given too often therefore they give different combos. But there are other options Avastin, Keytruda and I'm sure more.

Take care and all the best

Sue xx

[Hidden in reply to SUE7777]

Thank you Sue, I asked about having Avastin added to my next chemo, was told no unless I can pay privately. Unfortunately not an option for me.

[SUE7777 in reply to Hidden]

Hi Lyn, You can fight that! Avastin/Bevacizumab is on the Cancer Drug Fund list so it should be available but you have to put up a fight.

Good luck

Sue xx

[TarbonNZ]

Hi Lyn. Really sorry it did not work for you, my Oncologist has told me that the ‘parp drugs’ are very hit and miss for non brca, (me also), and more miss than hit. I asked when my husband and I said we would fund one non Publicly funded drug.

In terms of carbo/gem, I had this for second line, and it worked very well for me, putting me in remission, albeit only 12 months. The only issues I had is with gemcitabine, as it is hard on the bloods. I had 4 transfusions over the course, and 1 treatment break. I stuck it out and finished the series tho. I have completed third line with carboplatin only which worked very quickly, putting me back in remission, and also dealt to the three Mets on the liver. Fingers crossed for next review 5 June. When I say remission, I have never been NED, it is purely my CA 125 goes right down to 12, and the nodules shrink.

I have tried rain forest herbs, but one (or more of them) made me ill, and also started following Jane Mcelland on Facebook, but this just did not fill me with an confidence for some reason.

My Oncologist never mentions the dreaded time left words, it is unknown, and He also knows I do not wish to discuss. We all know what the end game is here, and do not need to have it stuffed down our throat. Best of luck with gem/carbo, will have fingers crossed for you and Laura. Therese xxx

[Hidden in reply to TarbonNZ]

Thank you Therese, if it shrinks my nodules and gives me a CA125 of 12, I will be a very happy bunny! Good luck with your review in June fingers crossed you are still "in remission" x

[Hidden in reply to TarbonNZ]

Thanks for reminding me Therese. I actually had a blood transfusion and two platelet transfusion while on Carbo & Gemzar.

[TarbonNZ in reply to Hidden]

Easy to forget, everything starts blending after a while. 😬

[Cheryl4677]

Really sorry to hear your results Lyn. I had four rounds of carbo/gem with little side effects although my hair did thin a lot.

I’m on the ICON9 trial and just had a CT scan so awaiting results. The previous one showed a slightly enlarged portacaval node which I didn’t know much about and still don’t know the significance. I’d cardiac nodes removed with the initial debulking.

My Ca125 was a good indicator but with various infections and heart problems not sure if the rise is of concern at the moment.

The thorny question of life expectancy has been discussed between my husband and I. I’d sooner just make sure that the finances and end of life plans are talked over. My husband says he would want to know the when. I can see both points of view. The current circumstances alter things in that even if I knew I can’t do things I would want to in the time left. Like visiting family, travel etc Let’s hope we come out of the tunnel and have some relief soon. Wishing you all the best Lyn. I hope you get some answers and this awful disease can be stopped in it’s tracks for a time. Take care. X

[Hidden]

Thank you, I didn't know what my expiry date was, before I was diagnosed and was very happy to not know, why would that have changed? This horrendous COVID has prevented any of us fulfilling our bucket lists if we had one. x

[Differentforgirls]

So sorry to hear this Lyn. It must be so shocking to hear.

Here’s hoping the new chemo combo will sort out this horrible disease for you & you can find your own way of enjoying life again.

My heart goes out to you xxx

[Hidden in reply to Differentforgirls]

Thank you xx

[Hidden]

Hi Lyn,

I’m so sorry that you got that news! What an awful shock. My heart goes out to you. Like Kathy, Carbo & Gemzar got me into remission after I had a recurrence on my liver and a few nodes. I found it to be a much less punishing regime that Carbo & Taxol. I took all the anti nausea & other prescribed medicines and I rarely felt sick. I was tired but that’s nothing unusual for us here. The first few doses were fine but I got more tired as treatment progressed, which is normal. I was told that I wouldn’t lose my hair but I actually lost most of it.

Be really good to yourself during treatment. Have Netflix on your tablet and watch nice things. Watch Anne with an E. It’s fab! Try Derry Girls for a laugh. And Chesapeake Shore.

Fight on, girl! 🤗🤗🤗🤗🤗🤗🤗

[Hidden in reply to Hidden]

Thank you - your comments have given me some hope X

[Kkaren]

Lyn I am not sure what to say other than I am thinking of you and hang on in there. Xx