Chemo hasn't worked

Hello again,

My dad had the results of his scan this week after six treatments with Gemcitabine and cisplastin. Sadly, the scan shows no improvement, in fact two more lesions in the liver.

The oncologist wanted to start a new regimen - (I don't recall what drug although I know it wasn't folforinox) but he has said no. He has been feeling so poorly recently that he cannot face anymore. However, I don't know if his symptoms are due to side effects of the chemo or the cancer itself?

I can't help wondering why he wasn't given the stronger chemotherapy drugs from the start. How do they decide what to give? Should it not be as a result of evidence (the studies I have come across seem to imply that gemcitabine has a poorer outcome). Is it down to costs? Apologies - I am just having a little vent!

My other concern is his arm - he has a raised, red, firm line running down the inner part of his right forearm which is quite painful. It appears to be a vein but it isn't where he has had injections. The oncologist saw it and seemed to have an idea what it was but didn't say and I didn't like to ask in case it worried my parents further. Can anyone shed any light on this please?

Thanks so much.

Hi Bluesky,

Sorry to hear about your dad and the fact that the chemotherapy has not worked.

The drugs he was given would be considered "stronger" drugs - cisplatin is one of the strongest types of chemotherapy available, and combined with gemcitabine, would be almost on par with Folfirinox - not quite, but not far behind in terms of toxicity and reactions to the chemo. Its not the first choice in pancreatic cancer treatment though, so I assume there was a rationale behind why this combination was given? This was probably discussed with your dad before he signed the consent form. However, it is a good drug, and there are hospitals who use this, although, as I said, it wouldn't be the most common regime. It can be used in other cancers as well.

In terms of the line down his arm - this is most likely to be something called "mechanical thromophlebitis", which is basically inflammation of the vein from where the chemo went in (most likely cause). It means that the vein has been irritated. It is often painful, warm and tender to touch.It may feel hard, like a cord under the skin. Has he been checked also for a blood clot, as this could also be one of the reasons things like this can happen? Cold/hot compress alternating over the area might help - keep an eye on it that it does not dis-improve. He might need anti-biotics if it does not clear up of its own accord. He should rest that limb where possible. Simple pain relief can help if it is painful.

Kind regards,

Jeni, Support Team.

Hi Bluesky and Jenni

I haven't posted in a while but I have always wondered why my husband was not offered furry fox only Gembitabine and Capecitabine combination. I did ask our oncologist but he said it was a regime he did not use. I don't think it would have made any difference to the outcome because when they found out he had pancreatic cancer it had spread to the liver and in fluid around the lungs. He did move onto what he called second line chemo but this was only oxiplatin and he only had one lot of this as went downhill rapidly after this. I know everyone is different but I have always wondered about the choice of chemo that Terry was given. Anyway I hope all goes well and that the vein in his arm improves. Good luck for all future treatment. Lyn xx

It seems arbitrary which regime is chosen although presumably an oncologist has his/her fav treatments. My man always wanted the folfirinox straight away but he had only gemcitabine which he couldn't tolerate and they gave up. It was only when it spread to his liver that they started folfirinox which he tolerated much better.

Hello Bluesky, Just thought I would post as Trevor had the same red line, his was in the back of his hand when he was on the 5FU chemotherapy, his pick line had failed, so he had to have his treatment via a canulla in the back of his hand, whilst on a ward in the chemo unit, The doctors prescribed a steroid cream, it took quite a while to heal but it did finally, I hope your Dad feels a bit better soon, and if he does, he might reconsider having further treatment, take care sandrax

Hi Bluesky, with regards to what chemo is available it certainly does appear to be the post code lottery again. When I was diagnosed in December 2012, I immediately went on GemCap followed by Chemoradiotherapy (based on the SCALOP trial). I tolerated this very well and it certainly improved my condition, though the tumour remained inoperable. I then had 10 months of no treatment, but in May 2014 it spread to my Liver and I was put on Folfirinox, which again seems to be working for me. My Oncoligist seems to have access to all the current treatments available and the only real consideration is my physical ability to tolerate them. It sounds like I am again luck with my chemo unit and Oncologist here .

I hope they quickly find a treatment that is going to make a positive difference.

Take care

Steve

X

Thank you everyone for your helpful replies.

I spoke to the specialist nurse today regarding the vein and it seems that this hasn't been looked into yet! My dad is seeing his GP on Monday so will mention it then. It's been helpful to have a good idea what it causing this - thank you Jeni.

Thankfully, he is feeling a bit better today. He's decided that he's definitely not going to continue with any chemo and is going to cancel his review appointment with the oncologist. He's going to have a good chat with the GP on Monday about everything. Actually, I think taking back some control has made him feel better. He was reluctant to have chemo from the start, so I am proud of him that he gave it a go. Looking back, at the initial appointment with the oncologist, there was no rationale given for the choice of drugs or discussion about alternatives....

My hope now is that he can have some good quality time before things start going downhill.

We have started to look into homeopathy to help with symptoms. Has anyone else tried this?

Thanks again for taking the time to reply x

Not tried that but there are a number of things which might help. Google away and good luck!