Love of my life, has secondary cancer

[sandraW]

Hi Martine, glad to hear Allen is in less pain now, have a really great holiday, you both certainly deserve it, take care sandrax

[nikkis]

Good for you Martine, have a wonderful time. We were debating about going away for next week, wondering if we should spend the money, and then when we heard about Lynda Bellingham's death yesterday we thought what the heck, who knows how long we have? Just off for a week in the New Forest, no where near exciting as your trip, but it's just nice to get away and do things as a family.

Best wishes,

Nikki

[SusannaUK]

Hi Martine,

It's good to hear that Allen is in much less pain now. Have a wonderful holiday for you two and enjoy every minutes!

Love,

Susanna xxx

[knutsford4]

Haven't been in in a while hope everyone is doing good, soooo, allen got CT results on Monday his tumor has grown from 3cm to 4.2 in 2 months, doc putting him on Oxaliplatin with fluorouracil and folinic acid chemo ( FOLFOX or OxMdG) has any one got and advice on this it's every 2 weeks for 4 months the folfox is attached to him for 48 hours

I'm so scared xx

[Didge]

Yes that is what my man is on and he's tolerating it well! He has a port in his chest for it and that doesn't seem to cause problems either. And the scan results have just come in and are good. x

[nikkis]

Hi Martine,

I am sorry to hear that the scan has brought you more stress, it is all so hard to bear at times isn't it?

As Didge says there have been some good results with that regime and everyone is very different with side effects, but hopefully a fit man like Allen will sail through it!

Best wishes,

Nikki

[sandraW]

Hi Martine,

My husband had 6 folfirinox, earlier this year, and sailed through it, his symtoms were tingly fingers and toes, especially when touching anything cold, a slight hair loss on his head and his thighs!! a sore mouth for a couple of days on the 2nd and 3rd sessions. As his blood sugar rose to 28, he is type 2 diabetic, after the 1 session he had no steroid at all.

The pump is a little inconvenient, gets in his way when he turns over in bed, but its manageable. He had a 4 month rest, but had to restart, in September this year, so far he has had another 5. This time it's been a bit more difficult, but the staff are amazing, and the infusions can be slowed down or reduced, so try not too worry too much. I remember us worrying how would we sleep when Trevor had his pump on, thinking it would make a noise or beep but it is silent in fact I forget it's there, not sure he does though. take care sandrax

[Slewis7313]

Hi Martine, I am currently on cycle 12 of Folfirinox and am coping pretty well with it. I appreciate having the PICC Line fitted as I had real problems with my "small wiggly" veins when having GemCap last year. I find having the pump fitted for 48 hours no real issue, though showering can be a challenge. My main issue in the early days was sickness (and sometimes feeling depressed) around day 5/6, which improved when my steroids were reduce and spread over a week, rather than the initial 3 days. Looking back, the experience has not been that bad and the Tumour Mark results have made it really worth while. The 2 week cycle is a pain as you only seem to be clearing a cycle when it's time to prepare for the next one. I have recently stopped Oxaliplatin as the neuropathy was starting to cause me some concern (inability to type and therefore affecting my work), but that was after cycle 11.

I hope the treatment goes well and continues to bring the expected good results.

Steve

X

[knutsford4]

Omg thank you all for your replies, it has put my mind at rest, he is still in high spirits, playing his poker doing all nighters lol, he still has pain in his back, but can only take 3 volterol in 24 hours so on pain patches, there not great but he won't let it get him down, so back on Wednesday for cycle 1 tgen Thursday for the picc line,

Thank you, it's great to talk to people who know what I going through xxxx

[PCUK Nurse Dianne]

Hi Martine,

I note you mentioned that your husband is having back pain evening with other pain medications. Has anyone mentioned the 'neuropathic pain agents' to you. We know that back pain is often associated with the 'nerves involved'. These originate from behind the pancreas, there is a bundle of nerve fibres there called the coeliac plexus and if the tumour is pressing on the nerves this often exhibits in back pain. There are some medications that are very helpful in managing this type of 'nerve pain' and these do need to be prescribed, and could be done by your GP or one of the other health team, ie one of the oncology doctors may do this for you. The common ones are called Pregabalin, Gabapentin and also Amitryptylline.

You may find some of the other forum members have also had experience of these medications, so please do feel free to add your comments for Martine if these have proven helpful in managing the back pain. These agents do not take over from the other forms of pain relief, they complement them, so often just need to find the right balance that works for the individual patients. Do feel free to be in touch if you need any further guidance with this, and I hope that some of the other patients may have experience that they are able to share with you.

Dianne

Specialist nurse,

Support team.

[knutsford4]

Hi Dianne,

Thank you for your information, I have heard of pregabalin, but when Allens results were not good, I just put the list of painkillers in my bag, we were just zoned out, they have said the steroids in his chemo might take the pain away but when I see the doc next week with Allen I will say to them,

Thanks again xxxx