A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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Muzzy64 Update

Postby Muzzy64 » Sun Jul 27, 2014 3:36 pm

As I've already posted on forum had to change from Folfirinox to Gemcitabine due to slight spread of liver mets after round 4 of Folfirinox. Also at the beginning of my treatment ( late March 2014) the consultant decided not to start me on prophylactic anticoagulants and after 3 rounds of treatment this time got a DVT in my PICC line arm. This, despite fact that when I had chemo for Non Hodgkinsons Lymphoma back in 2005 ( yes I've had the double whammy) I did get a very extensive DVT in my right calf. The Pancreatic cancer consultant has admitted that in hindsight he should have used prophylactic sub cut clexane but I find there is no point in getting angry, it works against recovery.
I also unfortunately got something called Superior Venae Cava Syndrome which prevented me from receiving chemo for 8 weeks. It also made me so breathless that my quality of life was zero. The liver mets unfortunately spread during this time.
However am now on weekly cycles of Gemcitabine. (Just completed round 4 ). The SVCS has responded well to the heparin. Also my urine which a few weeks back was luminous yellow has returned to normal colour as has my stool which did go a pale clay like colour. I'm on 30mgs MST twice daily and my pain is under control and I feel as good as I have felt since diagnosis early March of this year. Maybe my body is responding well to the supposedly less effective Gemcitabine.

Oh and a last thing. Got caught in a flash flood yesterday and my natural impulse was to run for cover. I totally forgot that there was no petrol in the tank, briefly blacked out and fell into doorway of high street bank. Unfortunately the automatic doors were working perfectly, they opened and I fell into the NAT WEST, Beckenham. I hit my head on a chair and feel a bit battered and bruised today. Hopefully this won't stall my progress. Next scan in 6 weeks.

Thanks for listening, Pete (49 yrs old, 4 teenage kids and wonderful wife)

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Re: Muzzy64 Update

Postby J_T » Sun Jul 27, 2014 5:56 pm

Hi Pete (49 yrs old, 4 teenage kids and wonderful wife) :D

Gosh you've been through it a bit but you sound like you're a bit back on track now. Wouldn't blame you for feeling a bit miffed re the clexane injections. There again, our onc didn't even mention that clots may be a problem, maybe he didn't know!

I don't know about gemcitabine being less effective, there are schools of thought that think there should be more put into matching a patient to the right chemotherapy for them. Its more technical than that of course but I'm no medic lol. The Fox seemed not to work so well for you, or my husband. Whilst it made him feel a whole lot better he also got mets to the liver so was put on Gem. However he was quite ill and only managed 2 sessions and those with a gap between. Looks like the Gem is great for you though so long may it continue! Its great that you feeling good again too!

The fall sounds horrendous, I bet you were really shaken, hope you're feeling okay now. On the plus side I suppose its good that you felt you had it in you to leg it for shelter lol. Feeling good is GOOD!

Best wishes

ps, you sound like a wonderful guy too.

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Re: Muzzy64 Update

Postby MSH » Sun Jul 27, 2014 11:47 pm

Hope this is the start of an upturn for you Pete.

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Re: Muzzy64 Update

Postby Nelsmum » Mon Jul 28, 2014 1:30 am

Oh Muzzy, the accident adds insult to injury doesn’t it. Gem may well be doing the trick. I have locally advanced PC and started Gemcitabine in Sept 13 for 6 months to Feb 2014. The disease is stable, no spread but no shrinkage. I have been monitored since then, still stable at last scan in mid June 14. It is great that your symptoms have lessened, surely a good sign.

Jane C

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Re: Muzzy64 Update

Postby sandraW » Mon Jul 28, 2014 5:04 pm

Hi Pete, hope you are feeling better now after your fall, thanks for the update its good to find out how people are doing, folfirinox is very strong and the side effects are many, so I hope you continue to improve on the Gemcitabine, you have certainly been in the wars though its good you can keep positive, I agree any negativity is not good. made me smile when you put wonderful wife, you obviously have someone to keep you on the straight and narrow!! take care sandrax