Just started Folfirinox

[The_petal]

I have just started Folfirinox (post whipple so no pancreas or spleen) so far it hasn't been too bad but I know the affects will ramp up as I go through the course (12 over 6 months).

The problem I have is trying to keep my blood sugar levels within bounds, I only had a boiled egg and a slice of toast at breakfast ~ who feels like eating? - but before my lunch my BS was 16.5 which makes it difficult to judge my pre-lunch Novarapid dose before I have my homemade chicken and vegetable soup.

[toodotty]

Hi The Petal,

I have not had whipple so I cannot comment on blood sugar levels with relation to being diabetic. However, re Folfirinox everyone is different. I have just completed round 9 and my symptoms have not ramped up, in fact my symptoms are better than the first 3 doses as I was jaundiced and very poorly at the time. As my strength and overall condition has improved so my ability to tolerate the regime has got better.

If you have just had whipple then you will not be back to full strength yet, so don't believe all the things that you are told, you are being quoted general statistics.

Google Milk Thistle to help with side effects, this may help.

toodotty

[The_petal]

Thanks, my other problem is that I just don't feel hungry!

[toodotty]

Hi The Petal,

I too did not feel hungry, I felt that I was trying to force down food when I felt as though I had just over eaten at Christmas. Unfortunately you will need to try to eat, this has improved for me during treatment. Look for easy to digest high nutrition foods, small and often is the key. I ate (and still do) a lot of vegan ready meals, BOL are very good, Aldi have a good range and Tesco Wicked are also excellent but pricey. (They taste a lot nicer than they look!). Steer well away from any fats, give your body a chance to digest the food. I also used multivitamins and spirulina. Around my chemo days I keep food really simple, no gluten and total vegan and this has got rid of my bloating/constipation/diarrhoea see-saw. After about 5 days I become a bit more adventurous, you will need to experiment and see what works for you. Also get some Ensure from your doctor this is a good fall back if you really feel grotty.

Best wishes,

toodotty

[Janey164]

Hi you are doing great, can I ask , are you experiencing hair loss at all.

Looks like that may be my regime when a plan is made ....to start Folfirinox ..

Despite clear CT’s were still trying to find my primary despite Liver mets, and Biopsy of Liver showed Adenocarcinoma of tissue type found in either pancreas, Biliary system or ducts ..

Jane xx

[Janey164]

And BTW smoothies are great can be filled with good nutrition and protein and easy to drink..

I add Oats, banana, fruit , seeds and almond milk, protein powder and are yummy ...

Get a good Nutribullet blender , makes nice and smooth

Jane xx

[PCUK Nurse Dianne]

Dear The Petal,

Thank you for sharing your story, welcome to this discussion forum and i am sure you will be well supported by the amazing 'forum family' who use this forum. Well done also on your recovery from such extensive surgery. It may be helpful if you wish to contact us on the support line Petal, as we can give you some guidance and input with your current symptoms. As it is now late in our working day, it may be easier for you to reach out to us. Please find our contact details below Petal.

With kind regards,

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

Support line (open 10am - 4pm) 0808 801 0707

Email; nurse@pancreaticcancer.org.uk

[The_petal]

Janey

Funny you should mention the hair loss, it has started after the surgery but before the chemo! I have put it down to the fact that I dont drink enough.

[The_petal]

As an aside, above I meant I dont drink enough fluid!

But

What is the consensus on having a small glass of beer whilst having chemotherapy.

[kate2101]

Petal

I have the occasional glass of wine now if I feel like it, my oncologist says it’s ok and could even help my appetite. I have a big glass of water with it too. Life holds few pleasures now!

Re hair loss - after 7 Folfirinox my hair is still there! It’s hardly growing and has thinned but I feel very fortunate that I still look ‘normal’.

Stay positive

Kate x

[The_petal]

My reaction to the first session was not as bad as I had first expected so that went well.

However had my bloods checked and my cell count was low so my 2nd session has been delayed for a week which is a bit of a bummer.

[Proud Wife]

Hi Petal

Welcome x

My hubby chose to have folfirinox every 3 weeks instead of 2 as he wanted to have quality of life. don't worry about having to wait another week. Use the spare week to build up valuable energy and try to keep your weight stable. As for the beer....cheers. You blinking well deserve it x

[toodotty]

Hi The Petal,

My 2nd round was also delayed because I was jaundiced. Infact, Round 2 and Round 3 were reduced doses because I was recovering from jaundice and the Oncologist was worried about the toxicity of the chemo and the side effects. So don't panic this quite often happens and your Oncologist is just making sure that you are well enough for the next dose. Totally agree with Proud Wife's comments.

toodotty

[The_petal]

More bad news as my treatment has been delayed again due to a low neutrophil count of 1.1 rather than the 1.5 they want!

The only 'good' point was that I discovered that when it was delayed before my count was 0.35 so at least they have increased over the last week.

[toodotty]

The Petal,

My Oncologist was happy for me to have chemo when is was only 1.3 and my white bloods cells were below the recommended level which did come as a bit of a surprise to me but I tolerated it well. I get a copy of each blood test result and have then on a spreadsheet with a commentary as to what happened when so it is possible to see patterns emerging. At the moment most of my bloods are good or heading in the right direction except for my platelets (used for blood clotting) which are declining with each test. Not too worried yet but want to nip it in the bud before it becomes a problem. Could me something missing from my vegan diet, so I will be keeping an eye on this.

toodotty

[The_petal]

Well my count was 2.89 on Tuesday so had my 2 course on Wednesday, went reasonably well although I did feel a bit nauseous afterwards ~ and my sugar levels are well up.

Because of my concerns with my hair loss I had a cool cap on whilst I was being infused ~ judging by all the faffing around I got the impression that they don't use it very often as the nurses had a problem disconnecting it every time I had to off to the toilet!

Has anyone used a cool cap and do they feel it works?

[toodotty]

Hi The Petal,

Are you not having Oxaliplatin? It is not normally possible to have the cool cap because of the peripheral neuropathy (tingling toes, fingers etc), this would make it so much worse. Even a cool drink during chemo makes my lips go numb. About to have round 11 on Friday and my hair is growing back, I think this is a combo of the Milk Thistle (protects from chemo side effects) and Spirulina (for immune system and anaemia, but since found out that it also promotes hair growth apparently). I have seen the cool cap in action and it does look like a bit of a faff.

I am glad your session went well, I think the first two are the worse. I also feel a bit sick for the next 24 hours, but it is not as bad as morning sickness so I just ignore it.

Erika