So far so good!

Jayne my bf takes turmeric (curcumin) capsules he was prescribed by a medical herbalist. Don't know if it will make any difference but it is supposed to help. Better than sprinkling it on meals if you want to try that! I also think the balance of what you like doing and the healthy way is difficult. But it has to be the person who is ill's choice and that is not always easy for partners/relatives.

Thanks Didge, will get some turmeric capsules. The oncologist wouldn't let me give him shitake mushroom capsules as said it would affect his anti sickness tablets !

Hes managed to put on a stone since his op which is brill. Just another half a stone to put back on now.

Love Jayne

x

Hi Steve. If you want to post every time, or anytime in fact, then post. If it helps you then do it, and I am interested in reading others experiences. I actually follow your posts quite a lot.

You seem to be doing very well, and tolerating it very well. Keep up the good work.

Leila x

Thanks Leila, I'll keep the info coming then. This cycle has in fact proven a little more difficult as time moves on. Whilst I had no sickness in the first 4 days, it has now come on in the last 2 days. It doesn't last long and only a few times a day, but I am as a result struggling to keep any food down the last few days. Luckilly, I am not underweight, so I can cope with some loss of weight and hope to recover some during the second week of the cycle. My first cycle seemed to pick up appreciably on day 7, which is tomorrow, so fingers crossed!

Steve

X

Hi Steve

I don't know if this helps but this was Jonathan's experience too. He didn't feel sick but he didn't have that great an appetite during parts of the cycle. He'd pick up towards the end always.

As always we're rooting for ya

Cathy xxx

Thats quite like my dad, Steve. The first few days he feels fine, then the 3 days before his next chemo, he feels sick and weak. I always thought it would be the other way around.

xx

hope the sickness has eased off now Steve,

jaynex

Steve was just wondering do they give you the 19.9 marker number everytime you go for chemo. We just get the number when we see the oncologist. Was going to ask the nurse when my husband gets his chemo do they know the 19.9 number as they know the hb, wbc, plts etc.

Thanks Jayne x

Jayne, They don't normally volunteer the CA19-9 information in the chemo unit, but it is on their system. They only do it monthly here unless the Oncologist specifically asks for it.

Steve

X

thanks steve, thought it might be on their system. Get husbands scan results on Tuesday,

take care

Jayne

x

Good luck for Tuesday!

Steve

X

So the sickness has not gone away yet, though the continuous feeling sick has which means I am sleeping better. Had a few more bouts since Saturday and have now lost 5Kg in 3 weeks, which whilst OK for me at the moment cannot continue. I left a message with the Specialist Nurse Team this morning and had a call back within 30 minutes.

We had a long chat and it would seem I am having a typical (though perhaps more severe than some) reaction to the chemo with the main issue being 'delayed gastric emptying'. They assure me the best medication for this is Metaclopramide which I am currently taking, so no change there for now. She will arrange for the Dietician to phone me so we can ensure I get the right type of meal and possibly specialist drinks in me for now.

We then discussed the way forward, which might involve stopping Folfirinox or reducing the dose. I am meeting the Oncologist on Thursday for a review, but have stated that stopping treatment is not an option for me at the moment. I think she liked that answer!

Now I see that my symptoms are explainable and not unexpected, I feel much better about the situation. I'll get back to you all after I see the Oncologist on Thursday.

Steve

X

PS....MRI scan on Friday to see what's happening in my liver.

Hi Steve,

Sorry to hear you are not so good at the moment. I'm sure this will be a temporary blip. Keep your chin up!

Thinking of you,

Hilary

Steve sending my best wishes and thinking of you just go with the flow .

Emma x

Take care Steve,and thanks for the good wishes

love Jayne

x

Jayne, my dads CA19-9 number is tested every 4 week, and results have taken 3 days to come back,

Sorry to hear about the weight loss Steve, I know how much that can affect the mind. If you can tolerate the chemo, then keep at it. Do you currently have 100% of it?

Leila xx

Thanks Leila, I am currently on 100% and hope to try at least one more session at full power. I'll see what my Oncologist says on Thursday.

Steve

X

Hi Steve

As always you sound so positive.

Best of luck for Thursday.

Cathy xxxx

Dear Steve,

Sorry to hear you are having a rough time at the moment, folfirinox seems to hit those who have had surgery hard. Delayed gastric emptying was an on going problem for Paul. At times we found erythromycin (an antibiotic) helped but that can give diarrhoea so it's a vicious circle.

Talking of that unpleasant problem, Paul is currently having his chemo, and was telling one of the doctors that he is trying your top tip of bananas for diarrhoea (recently started and seems to be helping). The doc thought this was a excellent idea particularly as he has just read a paper that suggested that very ripe bananas have some anti carcinogenic properties! So keep eating those bananas!

Nikki

Good luck on Thursday with oncologist Steve, I mentioned the possibility of PET SCAN for husband after reading your posts, I felt very knowledgeable, Husbands 19.9 marker gone down a little. Keeping him on the germy chemo and break in the summer, thing on liver still the same size so cracked open a bottle tonight,

thanks fifi about 19.9 marker.

love Jayne

x

Thanks Jayne and good to see some good indicators with a summer break plan. It was a bit strange with the PET scan. The jury is apparently still out regarding the usefulness of a PET scan for Pancreatic Cancer patients and as such my Oncologist could not justify funding (I believe it is the subject of a trial). However, the PET scan results supplied the additional information to justify the MRI scan on the NHS. Without the PET scan, I have no doubt the MRI would have happened, but we have definitely won some time by paying (insurance) for the earlier PET. Our options are so terribly limited with this illness, so it would be so nice to believe that any tool that MIGHT help would be used. Maybe the trial will help with this.

Hope the tipple was enjoyed!

Steve

X

finishing off dregs from the bottle tonight !

Jayne

x

Well...the sickness was brought under control, primarily by Margaret blending my meals for a few days which seemed to overcome the 'delayed gastric emptying' problem. As they were proper meals, they tasted great and portions are already in the freezer for next week, to be cracked open as soon as symptoms reappear. The MRI has also been done (yesterday), so we will have a bit more information on the liver mets next time I see the Oncologist. I am now in a much better place than at the start of the week and have agreed with my Oncologist that Monday's chemo will remain at full strength.

Whilst I love my job which I do from home, my boss has twisted my arm a little and suggested I take a break until the treatment settles down or is complete, so I am now on sick leave for an initial 6 weeks and see where we go from there. Not having to set the alarm for work has already been good on the days when I am particularly tired.

We are now expecting the next cycle to be far more manageable, so bring it on!

Hope you all have a reasonable weekend.

Steve

X

Hi Steve, Great news about the sickness settling down and fab idea of blending the food.

They didn't give my husband steroids yesterday with his chemo (used as an anti sickness)as the night he gets chemo hes wide awake. Well, its done the trick as he managed to sleep and whoo hoo chemo free next week !

Have a good weekend.

love Jayne

x

Well done Steve & Margaret ! enjoy the break from work and you both have a good weekend .

Emma xx