Progression :(

[Jessica-DianeB]

I’ve been a little quiet of late, but reading through and posting when I can.

Ive had some rubbish news that caeylx ( 2nd line treatment ) hasn’t worked for me, stopped at round 4 due to progression and new areas of disease in my tummy.

Over the last few months my breathlessness has improved so I was pretty certain the caeylx was doing something! My markers have come down too!! But scans have been compared and looked at at two different MDT’s. Its come as a shock, wondering what the next move is for platinum resistant, BRCA negative

Me !

I’ve been referred again to the Royal Marsden, trial options not looking to good from my research, 2nd surgery not an option.

Hoping with spring tomorrow comes some optimism!

Jess xxx

[Suzanne333]

Hi Jess.

So sorry to hear caelyx isn’t working. I can imagine how you feel. There will be another treatment plan. Something else will work for you.

I know how hard it is to keep optimistic but please keep positive.

We are all behind you.

Big warm hugs xxxxxx

[Nancy222]

Hi Jess,

Maybe there's something you haven't come across that will help you. Fingers crossed that Royal Marsden has something for you.

XXOO

[Lily-Anne]

Which cell type are you? I was offered some new ones coming through by Addenbrookes. Phase one though

Still waiting on tumour sample results but they platinum resistant Braca negative entry

LA xx

[Lindaura in reply to Lily-Anne]

Glad to hear you are on to something, Lily-Anne,

Reason for optimism???

X Laura

[Lily-Anne in reply to Lindaura]

Without hope what is there? Give up? No way!

I’m going to try Avastin my Go Fund me is getting close to funding the first dose along with some other money from savings I will have enough for scan and starting treatment then worry about it as I go

Chin up it’s never all bad

Xx

[Lindaura in reply to Lily-Anne]

Good to hear! Can you give me the Go Find Me Link?

Thanks,

You have made my day!

X

[Lindaura in reply to Lindaura]

I found your link! Going there now!

[Jessica-DianeB in reply to Lily-Anne]

Yes I’m HGS plat resist, BRCA neg. I don’t suppose you know the names Lily-Anne?

Hope you are ok, I’ve donated to your page xx

[Lily-Anne in reply to Jessica-DianeB]

Thank you so much. Appointment with consultant has been moved from 23/03 to 27/03 so frustrating as nearly have enough for round one!

The trials were Pissarro and octopus. The one I really wanted was onyx but my tumour type is endometrial and that’s not suitable. The one Im waiting to hear about is MOV-18 which is for grade 3 Clear cell but it’s been six weeks now and no news. It looks like Avastin is by far the best option now

Good luck

Xx

[lorraine71-Australia]

HI Jess, Sorry to hear Carlyx is not helping but as Suzanne said there is other treatment plains I've had 5 different chemo in the last 3 1/2 years, I'm sure your team will come up with a plain, we all react differently to chemo they will find the one for you.

take care Lorraine xx

[Jessica-DianeB in reply to lorraine71-Australia]

Thank you Lorraine, good to hear positivity. Are you platinum resistant? If so when did that happen and what lines of therapy did you have after that stage? Xx

[lorraine71-Australia in reply to Jessica-DianeB]

Hi Jessica, I had the usual chemo then surgery then chemo I only had just under 6 months when I had to go back on treatment,Carbo Taxol again this lasted only 3 month before 125 started going up again, so was deemed platinum resistant. Next chemo was Caleyx for 6 month had a short break, then detaxol I'm not sure if I have the right spelling it's a spin off Taxol, this did not help at all my 125 went to 1300 with in a few weeks.

my oncologist then tried me on Carbo/Caelyx with good result I had 8 month and 125 was down to 54 with little side effect, I did ask was I not suppose to be platinum resistant she said that later Carbo can be tried again it worked,

I was then going to go on Caelyx as a maintenance treatment at a lower dose Caelyx has been a good treatment for me.

But I was offered a trial drug, this drug is not chemo if it works it makes cancer more sensitive to chemo, so I've been off chemo now for 8 weeks and my 125 is now 175, so will be going back on calyx in about 3 weeks I need a break before starting treatment, my history is as soon as I go off chemo it start up again this has been like that now for just over 3 years..

I hope I have help take care Lorraine xx

[harpist_UK]

Hi Jess - sorry to hear this. I have had progression for last 6 months - taken off GemCarbo and weekly taxol which did not work, and at the last minute was rejected from Forward 1 trial because creatinine levels not high enough for their small print. They are recommending the Rotterdam regimen (plenty on this on the forum, and I posted recently about it) which is tough but probably what's needed now to kick it. Best of luck and keep the hope going...!

[Nicky100 in reply to harpist_UK]

What is the Rotterdam regime? What’s involved? Sorry you are having a tough time. I hope you manage to grit your teeth and mudgke through it. I’m sending you love. Nicky xx

[harpist_UK in reply to Nicky100]

Thanks so much, Nicky. The Rotterdam is Cisplatin infusions and Etoposide tablets - you have 3 infusions of Cisplatin once a week, then a two week break, then 3 more, so it gives quite a kick. If you have a look at my last post quite a lot of ladies have commented on it. I am surprising them as I am still walking around and feeling ok, though I have tired days now and also a bit of pelvic pain from the tumours. More recently there's lymph node involvement and axilla/breast, but other internal organs still ok. It could be worse.... xx

[Jessica-DianeB in reply to harpist_UK]

As Rotterdam isn’t a trial. Is it available across the board as standard therapy? I’ve read a lot about it being positive but data is very old Xx

[harpist_UK in reply to Jessica-DianeB]

I think it is an older therapy (cisplatin preceded carboplatin) and tougher to go through - not every hospital seems to do it as standard therapy. It's done at the Christie and there are several on the forum who have done it or are doing it now. I gather it's not a picnic, but worth a try as can have good results.

[Jessica-DianeB in reply to harpist_UK]

I wonder as I’m platinum resistant whether it’s an option I’ve not been told about OR that my hospital just don’t do it. Will ask thank you xx

[harpist_UK in reply to Jessica-DianeB]

I'm platinum resistant too on carboplatin, but I gather that still means you can try cisplatin. Do ask about it. Also the Forward 1 trial (the one I nearly got onto). Good luck!

[January-2016-UK in reply to Jessica-DianeB]

Ive looked at this as a result of Harpist and Janet about to embark on it. It may well be an option even for platinum resistant as there is data for this. Here’s a link to the data produced from the trial.

ncbi.nlm.nih.gov/pmc/articl...

I’m planning to ask about it as the results seem impressive even though resistant was counted differently then. I’m wondering if you can get a progression free interval from it of six months, more trials would be open. It’s still a platinum drug even if an older one. It’s worth asking anyway.

All the best.

[Nicky100]

Hi Jess,

Havw they given you a reason why surgeryvis not an option?

Sorry to hear about your progression, that is crap news for you to get your head around.

Have you spoken to your consultant about an immunotherapy route?

I would first find out why surgery is not indicated? Then we can go from there.

Love Nicky x

[Jessica-DianeB in reply to Nicky100]

Hi Nicky.

No surgery because disease is in pleura and can’t be operated. Plus the largest stomach lesion is sitting on a major blood supply, and the fact my surgery was 10 hours with complications with pancreatic leak. Both Marsden and my local team have said the same. My surgeon said it would take 3 hours just to get in with all the scar tissue. It’s deep infiltrative disease.

Was really hoping to get on the immunotherapy trial at RM but there’s only 1 screening slot left for 3rd line patient.

Octopus, Octave and Pazofos not currently recruiting

I think with my poor response to chemo so far, 1st line and 2nd line immunotherapy sounds promising. But where and how!?

Waiting to hear if the trials team have anything in the pipeline 🙏

[dryden1]

DEAREST Jess, I was so sad to read this you must be devasted. It is positive that you have been referred back to the Marsden, hopefully they will be able to find you an appropriate regime or trial, get you on it and hope that you get positive results. What about one of the Parp inhibitors I wish I could come up with other suggestions but I can see that the women on here will as always use their wealth of knowledge to give appropriate advice.Thinking of you. Love Chris

[SarahsJourney]

Sending massive hugs your way 🤗🤗🤗

[ShropshireJo]

Hi. So sorry you’re having a tough time. My fingers are crossed for you that the Royal Marsden come up trumps. Sending you love and a big bunch of 🌼🌸🌻🌺🌹 Jo xx

[Hidden]

I feel your pain I’m due to start caelyx following a reoccurrence on Friday, went to clinic this morning to sign consent form & all the side effects that might happen has depressed me. Plus the clinic was understaffed so long delays so when I met oncologist I felt she was rushing through everything & she wasn’t ‘focused on me’ & I came home feeling like they are just sticking a plaster on me.

I know I’ll get my positive head back on & I hope you do to, but I’m feeling very neglected at moment.

[Hertsmum]

Sorry to hear caelyx not working - I had the same response to it as 2nd line and was stopped after 4. It was with carbo so I was then deemed to be platinum resistant. I then started weekly taxol with 3 weekly avastin (as I was fortunate to have private insurance) which knocked it back for a while. Can you get your dr to put a case for you to get Avastin? There is also a phase 2 trial at UCH and possibly elsewhere for Nucana, a new targeted drug based on gemcitibine. It is for platinum resistant patients. I almost started it but at last minute there was a problem with one of my other medications. So currently am back on weekly taxol plus standard gemcitibine. It’s such a rollercoaster isn’t it and hard to stay positive when you go through treatment and it doesn’t help, but try to hang on to the hope that the next one will. Love

Madeline xx

[ellseybellsey]

Jess,

I am so sorry caelyx hasn’t helped you fingers toes and everything else crossed that the Marsden will have a new treatment plan for you.

Hugs Ellsey xx

[Julie40]

I’m sorry to hear this Jessica. Have you looked at The Christie? They run some trials that are only open to their patients. Maybe worth having a look xo

[Jessica-DianeB]

Thank you, I appreciate this xxx