No diagnosis. 4 months

Hi AHG 

Welcome to our community though sorry to hear about what you are going through. Quite a lot of parallels with my wife's experience where she went through months of tests before they finally found her cancer.

There are cases where the primary is never found, we even have a section on the main site here. It does of course make sense to try and find the primary if possible as treatments vary. 

Fingers crossed that you find an answer soon or at least a way forward.

<<hugs>>

Steve

That’s so interesting Steve.

Yesterday a third EUS was rejected by the endoscopy team, they are planning an ultrasound guided biopsy on the secondary’s.

 I will now feel empowered to ask if they will be doing the tests outlined in the section you refer to.

 Thank you again.

A

Only just read this.  If not too late when they do an endoscopy biopsy, ask if possible they take enough of a sample to do a genotyping too.  Look up all about genotyping.

I had my cancer confirmed by endoscopy biopsy,  with no known primary. But they labelled it as bile duct and gave me chemo accordingly.  The chemo had mixed results. But because one tumour continued to grow and I got a new lesion on my liver, they are now going to treat me with a second type of chemo, with still no known primary.  

A biopsy was taken from the new lesion on my liver and they are genotyping that 6months on from original biopsy.  

Hi

Thank you. Yes I had two endoscopic biopsies which failed to give any results.

This morning I sent off a blood biopsy which I had to pay for.

The doctors are now assuming bile duct cancer-cholangiocarcinoma and I am going have two chemo drugs and immunotherapy-Gem/cis/durv. Start Friday.

Good wishes 

A

Ahg123

Good luck,  Those are drugs I started off on. I managed 5 full cycles and day 1 of the 6th,  then other things got in the way of me having any more.

B

You did well. I know we are all different but what were the issues you faced on these drugs?

 I was told people may have an immediate reaction to cisplatin. Do you know what that might be? You have to be in hospital for this infusion-you can’t be given it on a mobile unit in a rural area as I had hoped.

Thanks

A

Not sure what that might be , nausea but I was given anti nausea before the drug.  You will be in hospital most of the day, min 7-8hrs but the time they put fluid in, flush the PICC line in between each drug. Do you have a PICC line?

So with me, rhe side effect was constipation.  Even drinking 2ltrs of fluids a day. 

Trapped wind, very uncomfortable. 

Hair started thinning after 4 months  but not lost it. I am having to take creon as dispite eating well and healthily I was losing weight and pushed to have a stool test done to check my enzyme levels and yes very low. Stablised after taking creon but they cause their own discomfort within my digestive system.

Not sure the immunotherapy helped as I felt very inflamed in my digestive track, hard to know what was causing the discomfort/pain.  It really will depend on where exactly your tumours are.

I have a major one encasing my aorta and that continues to grow through chemo. The one at my gall bladder stabilised and the third disappeared.

Then the next scan because I was in so much pain showed new lesion on my liver and the main one had grown substantially. So I have since had radiotherapy on it which has stabilised it, but the others with no treatment have grown. Hence the change is treatment plan. 

As you said everyone is different,  stay as positive as you can and takenone day at a time. If you feel crap one day, keep saying tomorrow will be better.

Not sure if that has helped or not.

Let me how you get on.

B

Thank you. No I won’t have a PICC line.

My diagnosis is still so unclear…inflammation of the bile ducts-couldn’t get any samples of cancer.

Lung nodules have grown so probably cancer.

No mass in the pancreas.

Gall bladder enlarged.

CA19.9 doubled to 200. Don’t worry about that says one specialist. Another says we will use that to show if treatment is working…

Bits likely in the peritoneum but couldn’t find the lump that showed up on the PET CT during biopsy so that was unsuccessful!

Let me know when you have your genotype results. My blood biopsy went off to California yesterday. Last chance before chemo for something definitive. I’m not hopeful of a result!!

Good wishes 

A

Gosh! A lot for you to take on board and process.  Are you based in the UK? Just you talk about bloods going off to California. No idea what Ca19.9 means but I think different consultants have different methods.  Mine only uses CT scans to see if the treatment has been effective.   PeT and .Mir all just at the very beginning. 

Yes I will let you know the outcome of the biopsy. 

B

Dear AHG123

Do much has happened in the last few days.  Saw oncologist Mon.  Biopsy result not back yet. So he said, and added most are negative. Anyway. And we need a positive to be able to access targeted treatment. 

The tumour treated by radiotherapy told had stabilised but lesion on liver doubled,  so wanted to move ahead with 2nd type of Chemo. Which starts on Mon 30 Folfox.

In the meantime   I went to the doc re a couple of things including ongoing discomfort/pain in lumber and lower abs. Sent me for an urgent MRI. Qt the same time he had me admitted to the hospice   with my consent, to try and get them to help get on top of my pain and discomfort. 

Got the mri report back today there is a mass invading my L2 and another invading the psoas muscle (which had shown on the CT scan, which my consultant had not said anything about!

It is causing my husband and I to doubt him. Also why did he not order an MRI after the CT when I said I was still in pain dispite the levels of meds I was already on?

Anyway I have vented now. Trying to process latest news...

They clinicians at the hospice are changing meds to try and ease the pain more.. so we will see. 

How are you doing, where are you based?