Newly diagnosed with Stage 3 locally advanced PC

[ValJean]

I’m attending my first oncology appointment next Tuesday 11th June to discuss possible treatment plans. Is there anyone out there with a 5cm x 3.8cm inoperable tumour who’s already gone through chemo, and has it helped?

[sandraW]

Hi ValJean, Sorry can't help with that specifically, but noticed in your previous post that you were suffering discomfort. Many people including my husband's pain was reduced due to shrinkage of the tumor by chemotherapy. This has to be offset by the reaction that the individual has from the treatment, my husband coped with it very well, but it did make him very tired. I wish you the best of luck whatever your decision maybe. sandrax x

[ValJean]

Dear Sandrax, Many thanks for responding to my post, I was beginning to think there was no one out there, hence my second post. Your comments are helpful, thank you, as I need some reassurance that there’s a benefit to me for putting myself through the chemo. Val

[taoofpooh]

Hi Valjean.

I have the same diagnosis. I have had two rounds of Folfirinox so far and by far the worse symptom for me is extreme fatigue/tiredness. Walking is an effort even. There are no guarantees that chemo will reduce or even stall the tumour but if the Oncologist suspects it will then you will be offered it.

I also developed ascites which was extremely uncomfortable (fluid build up in the abdominal area) and had this drained (8Litres) this week which was a relief, so watch out for tummy bloating.

Paul.

[ValJean]

Hi Paul,

From what I’ve been reading on the forum, it seems that Folfirinox is a standard treatment for Stage 3. Can I ask you, now you’ve started your treatment, have they told you how many you’ll need, or just that just depend on it’s effectiveness? I was diagnosed 4 weeks ago, and every day I’m feeling changes. I am starting to get frequent bouts of bloating, plus every time I eat it triggers pain (even though I’m taking Creon and being very careful.

To say I’m not worried is an understatement, and I’m sure you must feel the same, but I’m really trying to stay positive and hope the chemo helps! Keep your chin up.

Regards Val

[taoofpooh]

Hi Val.

I have initially been put on a 12 week chemo regime, i.e 6 treatments. They will take another CT scan at some point to see if the chemo is having any affect on the tumour(s).

Yes, your wide range of digestive symptoms are pretty normal and I certainly cannot eat like I used to. Eat small amounts is my advice and avoid things that increase chance of constipation as this can be a bugger.

Cheers.

Paul.

[ValJean]

Hi Paul,

I’m finding I can only eat small amounts anyway, and was told by the dietician to have 6 small meals a day (no more than I can hold in the palm of my hand. I’ve realised bread is bad news, so I’m avoiding it now. It’s the pain killers that give me constipation, so I only take them if I’m desperate, which thankfully isn’t too often, now I’ve got my Creon and the diet is sorted!

Let me know how your treatment progresses, and I hope you don’t have any more trouble with the fluid retention.

Chat soon, regards Val

[Borobi]

My partner was diagnosed in Feb with a 5cm locally advanced (ie inoperable) tumour. Started 12 cycles of Folfirinox. After 6 had another scan and the tumour had shrunk by a quarter. He’s had a few side effects but they’re not too bad. Hope that helps.

[ValJean]

Hi Borobi,

Thank you for sharing this information, it’s very encouraging for me. I had my first oncologist appointment this Tuesday, and I’m also starting a course of Folfirinox. The information sheet makes quite scary reading, but I’m determined to give it my best shot, as my prognosis without this treatment is less than 6 months, and I’m certainly not planning on dying anytime soon!

Give your partner my best wishes, and we’ll fight this monster together!

Regards Val

[Ninette]

I am stage 4. They told me my tumour is 3.5 cm, I did not ask for details, I am happy for every morning I wake up and I am still alive

I am halfway through chemo, 3 cycles, total 9 sessions. Yesterday I had my CT scan to check the results, but will know about it only in 2 weeks.

About my experience with the chemo, I don't mean to scare you, but be prepared for the worse. The first time can hit you hard, because all the leaflets they give you and information you read on the internet cannot be compared to the things you will experience yourself.

I underestimated the side effects. The first few days after the first session I was perfectly fine and thought that will last. It did not. On the 6th day, when I had to go for the blood test I was completely dehydrated because I had diarrhoea and nausea and was vomiting, so I lost all my fluids in the body and of fear of vomiting again I did not eat or drink. On the same day I had to go to A&E and spent 2 weeks in the hospital until they got me back to normal and I was able to continue the treatment.

After that, step by step I learned to deal with the side effects. My nausea medication has been changed a few times and what I am taking now, Cyclizine, works well for me. Just sometimes in the car I feel nausea, but I haven't vomited in weeks. I am also making sure I drink enough liquids and for the elements in my blood the doctor prescribed supplements of potassium, calcium and iron.

So my advice to you: do not underestimate the side effects and be prepared. If you feel that a medication doesn't work just insist for it to be changed. Research the medication you are given, because some are actually psychotropic drugs like Haloperidol that is also used to treat nausea, but can cause extreme fatigue. Do not accept anything that makes you uncomfortable. Always inform the doctors or nurses and they will help you find what works for you and it will be much easier to deal with the side effects after a while.

Oh, I forgot to mention, since the day I started chemotherapy, despite all the side effects, I have almost no pain. In the past 4 months I have taken just about 5 painkillers. Just for this it was worth it going through all the hassle of the chemotherapy.

[ValJean]

Hi Ninette,

Thank you for being so frank, although to be honest what you’ve described does not surprise me. Like you also I’m thankful for every day, and although I’m in pain constantly, it’s under control. I just worry that something going to happen suddenly! It’s been 6 weeks since my diagnosis and I’m getting very anxious to start chemo. Without chemo my prognosis is less than 6 months, and I feel I’m living on borrowed time.

My husband is constantly on the edge of breaking down, and although I’m keeping myself busy, I can’t get the fear out of my head. I’m having another CT scan tomorrow, then I go to the Vascular Radiology dept for some sort of test on Thursday morning, although I don’t know what they’re doing.

So as you can imagine, I just want to get started, whatever the side effects! I hope you’re starting to feel a little better, and good luck, you’re in my thoughts.

Regards Val

[Borobi]

Hi Val

Hope your treatment is going well and you’re not suffering with too many side effects.

Altho my husband was initially told his tumour was inoperable, after his 12 cycles of Folfirinox it had shrunk so much he’s now been listed for an op. So you never know what the outcome of treatment might be!

Keep fighting.

[Borobi]

Hi Val

Hope your treatment is going well and you’re not suffering with too many side effects.

Altho my husband was initially told his tumour was inoperable, after his 12 cycles of Folfirinox it had shrunk so much he’s now been listed for an op. So you never know what the outcome of treatment might be!

Keep fighting.

[Theresa Upton]

Hi Val. I was diagnosed last Oct with stage 4, I had 19 rounds of chemo and my main tumour and liver mets have almost disappeared. I also completed a immunotherapy trial in September. I have had no chemo since August and my latest scan suggested that my remaining tumours are stable. Hang on in there and I wish you all the very, very best.

Kind regards

Theresa

[Pete.]

Hi Val .

I have had 3 out of 12 cycles of Folfirinox and while I find the side effects unpleasant ( constant vomiting alternating constipation/ diarrhoea etc) I get through it that I will feel at least half ddcent for the 2nd wddk after treatment then it starts again . Hard to keep your chin up at times , take each cycle as it comes and good luck.

Pete.