I'm sad because I've had to come back from my three week holiday on Dartmoor a week early because for the last few days I've been getting really bad pain on the left side of my abdomen , before I went I had bloating but Buscopan was dealing with that , I had a routine CT scan three weeks ago and I've come back to two letters ,one for a MRI that mentions liver amd an appointment with my oncologist two days later . My cancer was in my peritonium and has been stable since march when I had my last chemo ,it looks like it has spread to my liver , I'm scared now ,my last chemo was fourth line so don't think theres much hope for me now ,any advice how to cope with this would be welcome.
Cheryl x
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I’m sorry you had to cut your holiday short, Cheryl. I’m not sure I have any worthy coping advice to offer. But I am 71 with mets in my liver and I finished my second line of chemo two months ago, so I understand how down you feel. I feel sad too because at last scan I had multiple tumors in my liver. I believe if I just had one tumor in my liver, an ablation could be done. Perhaps you can ask your oncologist if that procedure would help you. I hope your next meeting with your oncologist will lift your spirits with a new plan of attack. Wishing you all good things, Cheryl.
after my op, on CT they found a mark on my liver. They CT’d it again and then lost interest. I hope yours turns out to be a freckle. Our hugs are with you. Emma x and ourlove to Sashay, too.
I’m really sorry your holis had to be cut short because with our disease, they become extra important.
I hope that once you’ve had your MRI, your Oncologist will put a new plan in place to keep you stable and well again.
I’ve recently read of two new treatments being trialled in the U.S. which are having amazing results. We just have to keep going until such drugs become available to us.
cheryl, blessings to you. If this is another stage, hold your head up and carry on. These symptoms and changes are so hard. I had a hard day yesterday. God is with you and will carry you through🦋🦋🦋
Oh, Cheryl, that’s a shame about your holiday and now a probable recurrence. There are some interesting drugs being trialed. If you went six months since your last chemo it’s still effective. At least you won’t have a long wait between the mri and the appointment. Hugs. Xx
Sorry to hear your news Cheryl,the worry and fear must feel overwhelming for you at times.But it may not be as bad as you are thinking its going to be.I would suggest second or third opinions,there are treatments available to treat the liver such as resection or ablation in the UK.Would you consider looking into or possibly travelling abroad to a specialist cancer clinic such as in Germany or there is the Chemothermia clinic in Istanbul which ive been investigating where they seem to have more advanced treatments for treating advanced cancers.Sending much love and hugs to you xx
So sorry to hear that you had to come back from your holiday early. I hope they manage to find a treatment for for you. There is apparently a liver consultant at the Wellington and Royal Free hospital in London. Someone else originally wrote this on here a good year or so ago . There just must be sonething out there for you.
Sending hugs,and fingers crossed that things turn around for you. Do let us know what transpires. xx
I'm very sorry to read this. I had to pull a holiday forward to make sure I got it in the Summer ( it was only a week). Its so rubbish. I hope you are not feeling too poorly.
Am I right in thinking you are including a parp in your 4 lines? If so I think there are potentially a few more chemo options. I am on 4 th line chemo too, since Nov 2019. I have never qualified for a parp. I think like me you have had weekly Taxol. I finished this in May and started on carbo / gemcitabine ( also called Gemzar) in July. So hopefully that is one option.
I understand there is also the Rotterdam Regime. My oncologist doesn't offer this but perhaps yours does.
Hi Sassy, I’m going to be selfish and ask for advice. I started Taxol today because I had a huge anaphylactic shock reaction to Carbo after 10mls of it last time so I can’t have it again. This is 3rd line chemo for me. I’ll be having it every 2nd week
Did you take anti sickness tablets after Taxol each week? I’ve Valoid and all the usual anti sickness tablets. I took them for a week after Carbo but I forgot to ask what I should take after Taxol. Did the weekly Taxol shrink your tumours?
I am trying to think. I think I had Domperidone for 3 days but no steroids. I think I took for 3 days but cant remember. I could be wrong and may have also had steroids. I now have a tonne of different anti sickness and am allowed to take whatever works for me if I need it.
I had a blocked bowel when I started Taxol. I was lucky the Taxol unblocked it..it continued to shrink tumours but stopped working towards the end of the course. I finished it late May but had to restart chemo on July 13th, so only got 6-7 weeks off.
There are however lots of people who have had much longer before further treatment needed so try to think about them.
My chemo is now about managing symptoms rather than prolonging life.
Hi Sara, Thank you for that very kind reply. Despite all you are going through, you took time to give me information and to try to get me to focus on the positive. That says a lot about you.
I hope your next treatment keeps your symptoms under control and gives you quality time to enjoy.
Sara have you looked into the UPLIFT trial by Mersana? They are trialing it here in the United States as well. search the web and put in Mersana Uplift trial.......you never know! I am sorry to hear how you fairing. I am sending much strength and relief from you symptoms..........Love and Hugs from San Diego
Hi Cheryl. I’m so sorry that you are going through those awful feelings. I’m on 3rd line chemo now so I have some understanding of what you are going through. I had a tumour on my liver in 2018. After Carbo & Gem I was in remission for 3 years. I have a tumour on my liver again now and a lot of inoperable cancer in my colon, inside & out. I felt very hopeless for a few days but now I’m just concentrating on getting through what each day brings, enjoying the good days and rarely thinking about the future or the long term outcome.
I have read about women on here who were on 6th line and more so I think there should be options for you. And, as the other women said, there are new options coming on stream all the time.
I hope you can retain a little optimism. You don’t really know what you’re dealing with yet. A treatment plan should be given to you when have the results of your MRI.
Dear Cheryl theres drugs and trials out there for you lm sure keep asking the questions & research get 2nd opinion different oncologist see through different pathways. Ask about immunotherapy nothing easy in our treatments l know but there will be something out there for you. We have been in Scotland the last 4 days what a beautiful place. I went to church on Sunday and lit a candle for us all. Sending love ,&,hugs ❤ to everyone SheilaFxxx
there is a new trial I believe put out by Mersana I believe either UPLIFT Trial or UPRI trial they University of London? maybe I know 148 hospitals or Universities are available. I am on third line chemo in less than 3 years........... You can have up to 3 lines of chemo or more and you can be platinum resistant or not. The side affects can be tough but it seems to have shrunk tumors after even one I believe transfusion. Check it out! Until then sending strength to fight! TEAL LADIES STAY STRONG!!!
Some encouraging posts in response to all you shared, I can only add that I feel for you and do hope the next plan for treatment does its job and deals with these pesky setbacks. Wishing you all the very best. Just like the comment made 'its not over til its over' I also believe 'where there's life there is hope!' Xxx
Oh Cheryl. I'm so sad to hear of your current struggles. You know that you are not alone. Everyone on here will be with you when you have your test & get your results. It's only natural that your husband & family are feeling your pain but I don't believe they blame you for any of this. Just feel the love & keep focusing on your next lovely holiday after your oncology team get you back on track. Love & hugs, Irene xxx
Thank you Irene ,had a few heart to hearts with my husband today and I'm feeling calmer now and more able to cope , thank you for your kindness .xx Cheryl.
Nothing I can add except hugs. I'm interested in the ablation. I had menorrhagia (can never spell it) and I feel I should have had an ablation then as I now think that might have prevented the cancer. What is frightening is that one minute you're ok, the next you might have tumours elsewhere. I did have strange liver results at one point but further scans told them it was nothing. Fingers crossed for you. xx
I would like to ask whether there is any kind of online source where patients can learn ahead of time what might happen, where/when a recurrence might appear. I feel like the docs keep us in the dark, that all my cancer 'care' has been reactive rather than proactive. And only when we get symptoms does anyone say 'Oh yes, it could come in this/that place with these or those symptoms.
The other thing I'd add is that there is a drug, not licensed for humans yet, and not proved effective for OC but there's a lot of anecdotal evidence that it works for other cancers, that is being trialled for OC in Stanford in the US. I am taking it as oncologist says it cannot harm me. Probably not allowed to mention drug name here though??
Thank you I the hugs,much needed. I don't think oncologists tell us everything ,mine tends to drip feed me information, but does answer direct questions , I've jotted down lots of questions for him ,also jotted down suggestions from ladies on here including liver ablation . Im curious about the drug you're on ..
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