DIFFICULT NEWS

[Kim1958]

Last week I posted about finding out my cancer had returned with a CA125 of 700. I had my scan on Monday, and today the oncologist told me what the scan revealed. I have a 5 cm tumour and several smaller ones in my abdomen, and a 1 cm tumour on the bottom of my liver. My onc. wants me to do an immunotherapy trial that isolates a mutated gene and then treats it. I will get caelyx as well. No guarantees they can isolate a mutated gene. My onc. thinks this is the best way to go right now. I have agreed, but I am concerned because I can't start the trial for 4 weeks. I am wondering if there is anyone who has had a recurrence with a tumour on their liver, and if second line chemo has been able to shrink or eliminate it. I am feeling pretty overwhelmed by this news, and I am especially concerned about the liver tumour. Thanks. Kim xx

[Choski]

Kim.

I totally relate to your post. Told I've recurred on 26th Jan and am STILL not yet on treatment. I'm waiting to see whether I'm accepted on a trial too - Phase 2 trial NiCCC for clear cell that recurs within 6 months of front line treatment.

I signed the trial papers a week ago and was told my original biopsy needs to be sent to Glasgow (trial lead) for independent confirmation, then bloods, then CT scan. I rang this week to see if biopsy had gone yet - No! WHY NOT !!!!

I've waited since end of Jan, and still have a wait so try not to get annoyed that it's taking so long. Not easy sometimes.

The thing is if I have any chemo in the meantime that will rule me out of the Trual so it's keep calm time which isn't that easy at tines.

Sorry I can't share any experience about the liver but I was told trials are good for all the additional monitoring etc.

Big hugs and thinking of you

Clare

[85live4ev in reply to Choski]

Hi Choski, I realise why you have to wait but I would of had melt down by now!! Why on earth is it taking so long. I have been keeping up with your story & have to say I was shocked to read you are still waiting!!!!

Sorry if I am coming over as over the top but when you have oc every day counts. Let's hope they get their act together very soon. Take care Cindyxx

[Choski in reply to 85live4ev]

Yes it's annoying but my hubby is finding it harder as he is really worried that it's growing developing etc. The thing is I was told initially tharpt I was not eligible for trial and my local Onc said right start weekly chemo but my veins are shot so referral to another hospital for port. That Doctor on hols so had to wait. Then lead clinical professor was on half term and Taunton trial Onc had to wait for her to get back to revisit my case! Now it's down to Taunton pathology not yet talking to Glasgow to transfer my biopsy! I am ringing to chase and it is annoying as I know it'll probably be at least another week but I do feel forgotten! Kicking as% next week again I think! Apologies for language!!

Clare xx

[January-2016-UK in reply to Choski]

This long wait must be worrying as well as annoying. I remember Christmas 2015 and New Year interfered and delayed all the results I needed to get a diagnosis but at least was understandable to a degree. Have you tried ringing the Glasgow trial team as they might be willing to chase Taunton for you, as the trial team would not want to lose a patient who fits their criteria for participation just because of delays?

I hadn't realised you were being reconsidered for the trial (sometimes I miss posts for some reason) so good luck!

All the best. Helen

[Choski in reply to January-2016-UK]

Helen good advice, just emailed lead trial doctor in Glasgow and asked her to facilitate. That will either help,or get me kicked off ha ha.

Thanks I needed someone's advice!!

[January-2016-UK in reply to Choski]

Fingers crossed it's the former rather than the latter!

[Choski in reply to January-2016-UK]

I've had a very nice reply from the lead trial Doctor saying she will chase up my biopsy and progress of my papers too. So all good so far xx

[Nicky100 in reply to Choski]

Hi guys, sorry to hear there are such frustrating delays.. that must be hard..do ring and push, push push it through, you may need to sit on it until they do it. Good luck and love xxx

[85live4ev in reply to Choski]

Hi there, sorry you have to kick as* that's the last thing you want to do because it's just more stress. Yes I understand they need their holidays but cancer doesn't have holidays it carries on 24/7. I feel frustratied for you.

When my mum had oc we waited 3 months for her results no one apologied. They got so much wronge it was shocking.

As for your language it's mild compared to mine if I was in your shoes. Like you have said before pull up your big nickers, cape & I think boxing gloves as well then girl you are ready for anything! Good luck for next week take care Cindyxx

[Ktea2 in reply to Choski]

Hello there - I am fairly new to this forum and haven't posted here yet. However I have worked in the health service (mental health) for over 30 years. It is important sometimes not to wait. You may already know this - each hospital will have a PALS service (patient liaison) - thier role is as described in thier name. Give them a call explain the issue about the sample being sent and that you are really worried and it is imapacting on your family and ask them not chase it up for you and let you know why it hasn't been sent yet and when they expect it to go.

I am learning as go through the process of diagnosis that waiting without explaination is almost unbearable - it certainly brings out the worst in me!!

[Spencer2016 in reply to Choski]

Clare, Just wanted you to know that your wisdom, advice, positivity and kindness is very inspiring to me and encourages me to be strong and fiight hard. I hope things get sorted for you soon and you can again chase away the beast. I also hope you get as much support, generosity and hugs back to you in return for all you give.

Much ♥️ and 🙏🏻 to you.

🌺🌸🌼 anne

[LPorter in reply to Choski]

My goodness what a wait, you poor thing. I do hope you get started on treatment / trial soon. There are no trials suitable for me ATM. The platinum resistance is the problem, so I am for weekly Taxol. At least I am getting started next week having had my recurrence confirmed last week which seems to be pretty prompt. I hope that your symptoms tolerable.

Lesley X

[Kim1958 in reply to Choski]

Hi Clare

I'm so sorry you've had to wait so long, but glad you have now had a response. The rules of my trial are the same - no chemo before I start the trial. It is scary to think of waiting. I keep wondering how much the cancer will grow while I wait! I guess we'll just have to be patient Kim xx

[Choski in reply to Kim1958]

Hi Kim

I thought I was totally ok with waiting and in reality I am as I've learned to try and keep calm, like it's pushing everything down to a manageable level.but hubby and others around us care and they don't see it the same wy (Why are you still wating? Not heard anything etc?) and it's more in the forefront of their minds isn't it?

Just disappointed that nothing seems to happen, I know I'm not being physically sick etc but like you I wonder what's going on. I do know that I can't change anything though.

I and We, just DO don't we ?

Thank goodness for the support here. It's priceless

Clare xx

[Kim1958 in reply to Choski]

Hi Clare

Yes! The continual questions from everyone are stressful! I'm sorry that it has been a long wait for you. That has to be very hard! I know I'm wanting a call as well, and I've only been waiting since Thursday, and no, we can't change anything.

The support here is definitely amazing. I'm so glad I found this site. It has been a life-saver (so to speak) LOL

Hope you get more answers soon

Kim xx

[Purple-iris]

So sorry you have had this news after everything you have been through. Sounds like you are in good hands and your oncologist has a plan in place . Can understand the 4 week wait will be really difficult . Try and keep busy and fill with some treats if you are feeling up to it . Have you been offered any counselling for support . My first session today and am hoping it will help me be mentally stronger to continue this roller coaster journey we are all on .

Sorry can't offer advice re recurrence ( just finished first line, on Avastin and keeping everything crossed as stage 4) but wanted to send you a big hug , love and support from one Kim to another .

There are lots of ladies on here who have had recurrences and are fighting back .

Stay strong . We are made of tough stuff . We can beat this!

Love Kim x 💜

[Kim1958 in reply to Purple-iris]

Thanks Kim. I am seeing a counselor tomorrow and hoping that will help. I wake up with an anxiety knot in my stomach and go to bed with the same knot! Its awful! Thanks for the big hug and support, and a big hug back to you! Fortunately, we all have each other! Kim xx

[Nicky100 in reply to Purple-iris]

That have me some hope too Kim thank you so much for sharing this xx

[January-2016-UK]

Waiting is so hard when you want to get started straightaway so to speak. I think Caelyx is only given once every four weeks anyway, so at worst, you'd only be missing one dose by waiting for the trial. What's the name of your trial? You might find some others are already on it and can give you good advice.

All the best!

[Kim1958 in reply to January-2016-UK]

Thanks January-2016. My trial is called POG. Missing caelyx for only one dose is a great way to look at it! Thanks again Kim xx

[Spencer2016]

Kim, I am so sorry to hear about your reoccurrence. I am still flighting my way through first treatment so can't help with too much advice. Just want to send you big hugs and positivity as you gear up to fight again. Just curious, were you having symptoms or was this found through regular tests and checks?

Much 💖 and 🙏🏻 for you. You got this!

🌺🌸🌼 Anne

[Kim1958 in reply to Spencer2016]

Thanks Ann. I really appreciate it. I had a slight pain on both sides of my abdomen so my doctor did a CA125. My first 3 month post chemo appointment with the oncologist was the next day. Thanks for the hugs and positivity! I send the same back to you

Kim xx

[LPorter]

Thanks Kim for sharing your news and I am so sorry that the news wasn't better. You now have a plan B, and, like me, have no option but to crack on with it. You may get wonderful results with your second line and trial, remember, we are all individuals no matter what the statistics say. I hope you find something, anything that provides some distraction. For me it is photography and currently port! I told my GP that I was worried about becoming addicted to sleeping tablets, she was completely unconcerned - it seems this is the least of my worries!

[Nicky100]

Hi Kim, maybe we can support each other, as our recent stories so similar? I am so sorry to hear about your news but it sounds like you have a really switched on onc. Which hospital are you based at? It is devastating news for you. How long were you in remission for? Mine just returned too, recently at 700 too am waiting to find out where it has gone. If you need to chat please pm me if easier? Much love to you and keep your hope up Nicky xx

[Kim1958 in reply to Nicky100]

Hi Nicky Yes - absolutely we can support one another! I don't know how to private message on this site so if you could tell me that would be great! I live in Vancouver Canada, but the internet seems to make distance nonexistent I was only in remission 3 months. Very disappointing! How long were you in remission and was this your first recurrence? Keep in touch and hugs and positivity to you Kimxx

[Nicky100 in reply to Kim1958]

Hi Kim! I will send you a message and will see if you get it! I was in remission about 10-11 months..and yes..it is bitterly disappointing isn't it? You sound so upbeat though. But I know this is tough news for you too. And your story sounds so similar to mine. I will email you xx

[Kim1958 in reply to Nicky100]

I got your pm and responded Nicky

Kim xx

[koffeekat99]

Hi Kim

Is the tumour on or in your liver?

Post surgery I have residual tumours which include a couple sitting under my liver. I also was a little perturbed about that as the liver is pretty important, so I asked the surgeon about them. Apparently they could be 'scraped off' but weren't because I have a larger tumour in another location and protocol meant that was a bigger issue. That was over 2 years ago, but I am also 'low grade' so have slow growing tumours.

So I have been living with tumours touching my liver for over two years with no adverse effects. If you are not low grade then that may not help you, but tumours touching your liver on the outside doesn't necessarily mean that you will get liver symptoms.

That is different to tumours that are in your liver.

Your question about chemo. If it's going to work on a tumour I can't see why it wouldn't work on a tumour that is touching your liver any differently to tumours anywhere else, but you could ask your medical team. As I'm low grade I haven't had chemo. That is why I still have tumours.

In terms of having to wait to start treatment and worrying about the tumours growing in that time. Your best option is to speak to your medical team about your worries there. They should have a view as to whether 4 weeks will make a difference. Before I was diagnosed with low grade I had a couple of things that occurred that meant my surgery was delayed. I was told that the wait wouldn't make any difference on the basis of the info they had at that time. So it's worth asking the question of your medical team.

[Kim1958 in reply to koffeekat99]

Hi My tumour is on the bottom of my liver. I have high grade serous oc. My doctor doesn't think it will grow much while I wait for the trial. Hope she is right! It was really encouraging to hear that you have had no adverse effects for two years. That is wonderful! Wishing you all the best! Kim xx

[Natalies26]

Hi Kim I'm new to this sight but am in a similar situation to you. I was diagnosed in 2012 with stage 4 disease. Since then I've been having numerous treatments, paclitaxel,carboplatin,avastin etc. I was told towards the end of last year that there was a recurrence and my onc thought a trial was the way forward.I started this just before Christmas, they didn't seem to be in a hurry and started me on immunotherapy and alternating caelyx.To date I've had five treatments and although am having some side effects seem to be going the right way as my last scan was showing tumour reduction.My trial is in London and involves lots of traveling but I think I'm lucky to be on it.Hope your treatment starts soon and if you want to keep in touch would be great

Sheila x

[Nicky100 in reply to Natalies26]

Hi Sheila I am so pleased to hear you are doing so well after so much awful treatment. How long will you be on the trial for? Lots of love Nicky xx

[Natalies26 in reply to Nicky100]

Hi there, not too sure, have 3 more lots caelyx to go and indefinite immunotherapy, depending how well it goes, just hope I can keep up with the long journeys and the dreaded underground! Xx

[Nicky100 in reply to Natalies26]

Are you doing well and feeling OK? I am sending love and hope you manage the underground! Xx

[Kim1958 in reply to Natalies26]

Hi Sheila Thanks for sharing your experience with me. It is very encouraging! I'm glad the trial is working for you. I am hoping for the same. I would love to keep in touch. Kim xx

[Hidden]

Hi Kim. When my OC returned, it was on the liver and in a lymph node plus other places. I thought it was very serious being on my liver but my onc explained it was ON the liver, not IN the liver. I was anxious to get started on the chemo as I feared, being in a lymph node meant it was spreading and who knew where it would reach to. My onc wanted a watch & wait as he said, he only has so many weapons to fight it with and to wait was the better idea. I was on carbo/caelyx/avastin with avastin continuing as maintenance. That was over 2 years ago and I'm still in remission. So it all worked out well for me. I wouldn't worry about the 4 week wait and I believe immunotherapy is the future. We're all guinea pigs here. Good luck. Pauline

[Kim1958]

Thanks Pauline for sharing your story. It gives me great hope! I'm so glad everything is going well for you! It makes me feel better about waiting for 4 weeks. I too believe that immunotherapy is the future. Thanks again Kim xx