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So far so good!


Slewis7313
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Thanks both, I think this old geezer just is panicking a bit. Hopefully it will start to improve some time soon. At least Xmas is on it's way and I shouldn't need the fingers too much over the Hols!


Steve

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The neuropathy was the only noticeable effect after I'd finished Folfirinox last year. At it's worst stretching would make it worse and if I looked down I'd get a shooting sensation in my legs. There has been a steady improvement over the months and it doesn't really bother me at all now, though I still have the tingling at the very end of fingers and toes. I was concerned that my latest round of Folfirinox would make it worse, but I can't say it has, though I only get 80% strength because of neutropenia.

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Thanks Mark, that is reassuring. Your symptoms / stretching / head mvement etc. are very similar to mine. It is also interesting that it has not worsened when chemo was restarted!


Steve

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You are an amazing person Steve and you are doing so well indeed. I am sorry to hear about your Neuropathy getting worse. I don't have experience in this, as my husband didn't have any. I really hope that it can be sorted out.

I wish you and Margaret and your family a peaceful Christmas.

Susanna xxx

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  • 2 weeks later...

Just back from my latest Oncology appointment with good news. I started Folfirinox back in May as a result of the spread to my Liver. The Tumour Marker has since dropped quite dramatically and the PET Scan I had on 17th December shows no activity in the Liver and reduced activity at the original site. They are obviously still there, but have been given a thorough kicking by The Fox!

My Oncologist is putting a copy of the PET Scan together, which I will send to Prof [name removed - moderator] for his consideration.


Neuropathy is still an issue, but it seem to have stopped spreading for now. I am seeing a Neurologist (privately) on Monday to discuss this, so tingly fingers crossed!


All in all, another good set of results from the Lewis household.


Steve

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Thanks for the news Steve, my Rob is on folfirinox and has now had 9 treatments and appears to be working well at the moment. So your news is very encouraging. Wish we could go with Prof treatment for the liver tumours - I'll have to keep doing the lottery! x

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HNY Steve! So pleased to hear the news remains GOOD! Fingers crossed for further good news this year and hope you get and have a good meeting with Prof .


Julia x

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Brilliant news Steve, what I like to read. Read that to my Dad and he sends his wishes. It has also made him more positive for his upcoming treatment.


Leila xx

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PCUK Nurse Jeni

Wahoo!


Go Steve!


Such wonderful news from Wales for 2015! Very pleased for you - and this comes from us all on the Support Team!


Jeni, Di and Anna.

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Thanks all for the messages of support. I've now seen the Neurologist who has sent a prescription to my GP for medication to take the edge off the Neuropothy. I'll find out what the medication is when I collect it tomorrow. My marker has crept up a bit from 88 to 134, though we are not going to read too much into that figure alone bearing in mind all the other good indicators. I am hopefully going to see my Oncologist before I head to Tenerife on 17th Jan. I'll update again then!


Take care all!


Steve

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Thanks for all the Holiday wishes......I will make the most of the week away and hope we have a bit of sun. I must again mention my Neuropathy as it continues to worsen, albeit very slowly. Oxaliplatin was stopped in early November, so it is a little disconcerting that it has not improved at all. I am still receiving Irinotecan, which I understand can also cause Neuropathy, though less likely than Oxaliplatin. I am on Gabapentin which should take the edge off the tingling, but I wonder how far Neuropathy can spread. My hands and feet tingle permanently and I feel the spread of an aching feeling in my lower arms and calves. I don't seem to have any serious dexterity problems, but need to concentrate when doing buttons!


Any related experiences would be much appreciated!


Thanks!


Steve

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Hi Steve


Tracy has now had 24 sessions of "The Fox", albeit the Oxipalatin reduced to 50% for the neuropathy. She has had 12 sessions of accupuncture given by the Sarh Lee Trust and has found this has helped the sypmtoms somewhat, but at the same time it has helped with the huge amount of toxins that are contained in this chemo. It's just a thought you may wish to try everyone is different. We follow a man in America and he is now on number 42 of "The Fox" although Oxipalatin removed after 16. He finds accupuncture helps him too. His prognosis was 23 months ago with the worst possible outcome. He is so inspirational and continues to fight like so many. Annette

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PCUK Nurse Jeni

Hi Steve,


Sorry to hear that you are still experiencing neurotoxicity.


Having given Irinotecan for many years in the chemo unit, I am not aware of it causing neurotoxicity.

I have also double checked in my trusted chemotherapy handbook, and there is no mention of it.

We do know that cold/damp weather makes this much worse Steve. Also, that even if you are off the drug, its effects can linger on for some time. However, I have also not heard of it spreading up the arms or legs - what has your oncologist said about this? Have you had your neurology appointment, and did they do a full neurological examination? What were their conclusions?

Hopefully, a bit of sunshine might help things a bit.


I would certainly let the oncology team know about this and monitor this if it gets any worse.


Kind regards Steve,


Jeni.

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Thanks Annette, I had started Acupuncture a little while ago but put it on hold whislt assessing the situation with my Oncologist. Perhaps I need to review the acupuncture option. I believe I know the guy in the States who you refer to.... He is indeed an inspiration!


Thanks again


Steve

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Thanks Jeni, I did see the Neurologist who did various tests involving manipulationg my digits and sticking small needles in various points in my hands and feet. He was of the opinion that Oxaliplatin was the offending drug, though did state that Irinotecan can have a similar effect, though is unlikely to be my problem. He has asked for bloods to be done, but I have not done that yet.....perhaps tomorrow before we head off to the sun.


Your comments based on actual experience are reassuring, so perhaps my concerns are (again) unnecessary!


As far as the Gabapentin goes, I have worked up to 3 x 300mg per day. I seem to be losing sensitivity in my finger tips and wonder if I should cut back a little on the tablets to try and get a better balance between tingling and sensitivity?



Questions, questions and more questions I'm afraid!


Steve

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Hi Steve


Your experience is exactly the same as Jonathan. His neuropathy worsened for a while even after chemo had stopped. His chemo stopped in May and I think it finally started to improve (after getting worse) in about Sept/Oct. it affected his arms and legs.


Hope this offers some reassurance before your holiday starts


Cathy xx

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Hi Steve I am sure a holiday in the sun will do you the world of good and Margaret ,my hubby found Gabapentin to be a really strong drug and felt quite disturbed taking it so just be aware of the side effects we sometimes felt the Dr were just clutching at straws the way they dished out the tablets .


Emma x

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  • 2 weeks later...

So, a lovely week in the Tenerife sun is now behind us and back to reality! I am now on cycle 16 of 'The Fox', but without Oxaliplatin. The neuropathy seems to be stabilising and whilst frustrating, is not really effecting what I can do. I am on 3 x 300mg of Gabapetin to assist with the Neuropathy which I assume is helping with the tingling.


After I read the recent, very positive PET Scan report I pointed out to my Support Nurse the comments regarding a coil in my PICC Line. I am having an X-Ray today to see what is the current state of play, with a view to having it replaced next week. Apparently, a coil does not affect the administration of the chemo, but could increase the possibility of a clot, so needs to be sorted.


The scan shows a substantial reduction in the primary tumour site and no trace of the liver mets which were apparent in May's scan. 'The Fox' really does seem to have done the business!


The Tumour Marker has crept up a little (currently 174), but still not worryingly high. Prof's PA has my latest scan and will hopefully review when he gets back from his Holiday on 5th Feb.......watch this space!


All in all, still looking good, especially with the positive PET Scan results.


Take care all



Steve

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