Change of plan possible?

Hi,

They usually give the chemo first to try & reduce the size of the tumour pre surgery...

Please be assured these side affects are only temporary & don’t last forever. You should hopefully start to see a big reduction in the pain / pins & needles by week 2..

Suzy 

I had a picc link fitted for my second Oxalyplatin infusion, it made that much more bearable. The pins and needles are much reduced in 7 to 10 days, and jaw spasms settled within a couple of days, trying to keep warm seems to be the best option. 

My oncologists were very keen to hear about side effects, my Oxalyplatin infusion was given over 2, then 3 then 4 hours and the dose reduced to 75% for the final two infusions, I've just had my sixth and final one.

I've been told that I'm inoperable due to lymph node spread but my half way CT scan did show shrinkage in my lymph nodes and probably some in my duodenal tumour. The oncologist did say that they would consider me for surgery if there was enough reduction, but its not an expected outcome, were they not that clear with you?

I have found my liaison nurses useful for information and I've called the triage nurses when I have had any worrying symptoms, it sometimes takes a while to get through, but they are always helpful.

I hope that your side effects settle soon, but it is definitely worth calling the hospital if they are unbearable. 

Best wishes 

Hi Davisio, sorry to hear what side effects you're having. Please let your oncology team know as they will want to make you more comfortable with the chemo. They can reduce the drugs, you shouldn't just put up with all of this. My husband's team are always keen to learn of any side effects he may have, so they can adjust the treatment so that he is able to continue.

Love Frances xx

Always hoping for the best

Thanks Suzy....I had district nurse come out to give me injection of metoclopramide that was put in my bag of goodies ! Sounds like I need to try a bit of humour from now on like you guys :-)  it didn't work....the nurse did say it's more for being sick...which I'm not just very queasy....will phone GP tomorrow and see if I can get something...I think it's maybe not being able to go to the loo since last Thursday ....will take more cosmocol... I phoned oncology nurse to ask about pic line...but she said that isn't an option for this treatment...also..the longest infusion I could have is 3 hours instead of 2....perhaps that might be better? Also...I have an appointment with different oncologist before second cycle..as no appointments available with original one...quite glad, as she had no time for me...hoping this one might be more helpful...I know they are busy and what with a lot going on....but it doesn't take any more time to be kindly than it does to be curt...hoping this one will be able to be kinder.... thanks again for replying ...irene 

Thankyou Francis...seeing a different oncologist next time.....hoping for a bit more help...hope your husband is doing well xx yes...we must all hope for the best..thanks for replying x irene

Hopefully iver 3 hours will be an improvement over 2 hours

Pity they aren’t able to insert a PICC line...

Good luck for the meeting with oncology  Everything crossed it brings an improvement for you..

Yes, I have been constipated from Friday, but usually on day 4 or 5 that rectifies itself when the Oxiplatin is going out of the system & then it usually goes a bit the other way (diarrhoea) but usuly manageable

Suzy

 thankyou for your reply.......sorry to hear about your problems too....hopefully all your treatment has sorted you out,   ....I had difficulty trying to find out my treatment plan...but persisted as I wanted to know....but I suppose it's a case of taking it one step at a time..it's .the most hardest thing to have patience for...wishing you all the best ...Irene

It is certainly a trial situation for sure, juggling & getting the levels correct.

My oncologist is very good, Inrewlise how lucky I am!

She adjusted my steroids for round 2 also because round 1 hit me so hard! With hitting a wall with fatigue (couldn’t even manage a 5min walk!) & the brain fog!

It  did help! She said she was happy to do it because I was only having 4 rounds. (& I got the impression she couldn’t have done it if it had’ve been for any longer!) 

inthink she also agreed to the 4 hour infusion because I took a throat spasm after round 2! (TOP TIP DO NOT BREATHE IN COLD AIR!)

She said I had an option to remove the oxi altogether but would then need a further 3months of the capecitabine tablets to make up the shortfall (because there wasn’t enough research to support the tablets would work as well on their own without the oxi infusion for the original period of time)

insaid I was going to be brave & give it another go!

Al now glad I did!

it’s all a juggle I think
Thanks so much for your well wishes Irene & the same for you x

Suzy 

I think you are right...that was interesting about the choice of oxy or tablets....although both of them are hard to bear....the thought of another 3 months of those tablets .....well....I think I would go for the oxy...at least that's only a few hours....I wonder how they work out all this stuff? I just hope it works and shrinks the cancer....wishing you well and everyone else going through this xxx Irene