Advice on seeking additional treatment (e.g. Durvalumab) other than Gem/Cis chemo

Hi 

I am so sorry to hear of your diagnosis and difficulties surrounding the whole situation. My dad has cholangiocarcinoma and I myself have stage 4 malignant melanoma. Nothing prepares you for the emotional and physical roller coaster you embark upon . I’m sorry I have very little in the way of practical support to give you. All I can say is that you need to absorb the love from your family and yourself,  the knowledge of the  medical  team and then search deep within for the strength to cope with it all. My thoughts amd prayers are with you. Be strong xx

Hi Dancingintherain,

It certainly is a rollercoaster. It sounds like you and your dad are aboard that rollercoaster too. When did your dad get diagnosed with cholangiocarcinoma? It is just frightening, the Oncologist said it’s uncommon to live for 1-2 yrs. I am trying not to listen to this and just do my utmost best to live as long as possible! 
Thanks for your reply and wishing you both the best in your journeys.

Sorry to hear of the diagnoses on here.  It makes me sad reading the uncertainty in everyone's lives!

My story is...

My Mum (63) was diagnosed with T4, NX, M1 in gallbladder cancer in June.  She was supposed to have her GB out July 2021 but they sent her home after 2 weeks in hospital and told her she'd be fast tracked...she didn't hear anything until January 2023.  There was suspicion of a gallbladder cancer at the beginning of this year from scans but after xrays, ct's, mri's and pet scans, everyone diagnosed inflammation.  Her op was scheduled for 09/06 and unfortunately when they opened her up, the Cancer was there, also invading her liver, colon, duodenum and a spread to the diaphragm.  It has been a terrible time!

We met with Professor at Clatterbridge on 20/07.  He said his aim was to shrink the cancer.  We told him we didn't want a time frame and wanted to take it cycle by cycle / scan by scan.  He agreed with us and said surprisingly Mum didn't look like a typical patient with this diagnosis. He told her she would be offered up to 8 cycles of Chemo + Immunotherapy (indefinitely if all was well).  She started GemCis on 26/07.  She felt a little nauseous of an evening for a couple of nights but the anti-sickness tablets took this away.  Her other mild symptoms were a bit of a dry throat and constipation for a couple of days.  She was happy with all of this!

On 16/08 she had her 2nd cycle of GemCis 1st cycle of Immunotherapy (it wasn't ready in time for her 1st cycle).  Unfortunately at this time, my Dad had taken ill and was rushed to hopsital to have his GB removed.  Mum took a bit of a nose dive, worrying about Dad and she appeared to have more side effects such as tingling in feet, breathlessness, raised blood pressure, blurred vision (also started losing some of her hair).  The nurses at the hospital weren't very helpful at all and just advises us to ring triage line, who then tell you go to the main hospital's A&E!

Mum's neutrophils were low and she couldn't have Chemo on 23/08.  She did have her baseline CT scan this day though.  On 25/08 late in the evening she got a call to attend A&E immediately as a blood clot had showed up in her aorta!  She was kept in all weekend.  The hospital also told her there was something on her lung and Clatterbridge would need to follow this up.

Her chemo was cancelled again this week as an oncologist believed it would be best to start her cycle again next week with the Immunotherapy.  This additional cancellation has obviously worried us all.

Mum had been great up until this point.  We don't know whether there has been a reaction to the Immunotherapy, whether it's actually normal to feel like this, whether it was stress or a combination of any factors.  We really want the Immunotherapy to be viable and work! I personally contacted the Professor expressing my concerns and he did write back to me and tried to offer me some reassurance and said to catch up at her planned 3 week clinic appointment next week.  For some reason the word "reassurance" isn't actually sitting well with me and we are all dreading Tuesday.

Mum is just 1 patient in a sadly big system.  However, our loved ones mean the most to us don't they.  Challenge anything you think is wrong, question things you don't understand and even on the darkest of days, please have hope.  Sending love to you all xxx

Oh my Steph your family have been through the wringer.  Can I ask which immunotherapy drug you mother might be give ? 
Our story is that my husband had a pain in his side and dark urine. He went to see his doctor, who said it was kidneys, we were asked if we had private medical insurance because the NHS wouldn’t be able to do a scan for at least 8 to 12 weeks that was all way back in June. 

In order to get a scan we had to go and see a gallbladder man who didn’t think it was kidneys. it was my husbands gallbladder and it would be very easy to whip it out. And yes he would get a scan.
We went back to see gallbladder man who bluntly then, and there said that my husband had liver cancer. It was on untreatable and incurable. But he covered himself by saying it wasn’t his area of expertise  

What was just negligent of this man is that he did not forward the scans on to anybody didn’t refer us on to anybody did nothing. Meanwhile, our GP went on holiday and nobody followed up on my husband.

At this time no one was looking after us at all. It was now August and so we went to OUH. Having chased and chased for the scans, eventually we got them sent to OUH who took for ever to open them.  
We saw a liver person who tried to book a biopsy, but that wasn’t going to take place until the 5th of September so my husband went in as an emergency, as you will know for a liver biopsy, one can’t eat six hours before a biopsy or drink two hours before a biopsy. Ultimately having been in OUH for three days with nothing happening my husband became very dehydrated. They did actually do the liver biopsy, but by the time I got him home he was an AF and spent two days the following week in A&E being rehydrated I think OUH should have realised he was getting dehydrated and given him a drip but they didn’t so there we are. 
We kept in touch with another hospital closer to our house, and that is when we learnt about the potential of a mutant gene from the oncologist. The oncologist also said he could get my husband in for chemo within a fortnight which is exactly what he did. OUH sent him a letter suggesting that he came in for pre-chemo talk on September 20th. 
We are now chasing OUH again for the biopsy to see whether my husband has a mutant gene. In which case he won’t be given chemo. He will be given a different targeted drug. Sadly none of this will extend his life but it might give him better quality of life. OUH have said it could take 3 to 4 months to get the biopsy done. In reality I’m not quite sure that they are the cutting edge teaching hospital that they purport to be. Indeed we are very disappointed with them. Hopefully our current oncologist dept will have better luck in chasing OUH, but truly it has been quite a mission and until now we have had no help whatsoever. I feel for everyone who is going through this trauma and it appears to me one just has to keep pestering people to get things done as, until now there has been no system to speak of. Just the odd helpful person along the way. 
Sorry this was longer than I intended - so thanks for reading it! 

Hi. Sorry to jump in on this chat. I'm really sorry to hear about your husband & hope his treatment went ok.

Please have a look at my profile for more information re my diagnosis.

I've been looking at loads of posts on here this evening

My Oncologist believes my primary cancer is in the bile duct. I'm waiting to start treatment which is the same Chemo as your husband. My biopsy is being tested further to see if gene can be found in order I can go on this this other drug. Which I believe is the same one you are talking about. Hope you don't mind me asking but why would this drug not extend your husbands life? Does your husband have secondaries somewhere? My understanding is the gene drug can kill the cancer. 

Thank you so much. Xx

Hi there GNG - no worries about jumping in and thanks to Snobs and Nirch I have learnt so much from this forum. I’m just so sorry for your news.  
If OUH pull their fingers out and get the biopsy sent of for further investigation, and should my husband have the mutant gene he will be given a drug called Pemigatinib. As although he has nodes on his lungs, it is the same cancer. So the Pemigatinib would shrink those nodes as well. 
at least that is my understanding. Also the drug is supposed to be less brutal than chemo. 
I quite understand your question in that if Pemigatinib works, why can’t my husbands life be extended?

Should you get in to the trial at UCL do you know the name of the drugs you will be given? Interested to know as we appear to be with a very understanding oncologist to whom we can actually talk and he listens. 

Hi. Thanks for coming back to me. I never asked for the drug name which is a shame, think because he said 50/50 chance I thought let's see if it goes in my favour. My understanding is these gene drugs could kill the cancer that's what my Oncologist said. I'm sure you said in a previous post it would give your husband better quality of life rather than extending it. Unless I misunderstood. I'm just hoping I can go on this drug & it all works out. Like your husband's journey everything is taking ages, had a nightmare with hospitals, UCL is the 3rd hospital I ended up under. Think there is a lot of new gene drugs on trials. Fingers crossed your husband gets on the drug. 

Hi and sorry to hear about your husbands diagnosis. 

I started on Gen/Cis last August . I found it ok. The cisplatin is a bit nippy going in so ask for a heat pad and that does help. 

I hope your husband gets on ok with it 

Good luck 

Sorry to hear you're not getting anywhere fast. It's frustrating isn't it. I won't let anything go, especially given it was evident my Mum was neglected. We really do have to fight for our loved ones.

Mum is on Durvalumab(Imfinzi). Really hoping they don't stop her treatment altogether next week after the news of the clot.

Wishing you and your husband all the best xx

I’m a bit numb this morning, and tbh totally miserable. But just wanted to say I very much hope your mother continues to get Durvalumab. I understand there is a trial with that drug at UCL. Wishing you everything good.