Stopping chemo! Help

Hi Lealan

i have exactly the same stage 4 oesophageal with liver metastasis. I’m currently in cycle 3 with the same treatments as your husband and awaiting results of a CT scan which was done yesterday.

I was given my treatment plan at the beginning which was for 6 x 3 week cycles of chemotherapy and immunotherapy with the immunotherapy to continue afterwards for up to 2 years as long as it was tolerated and effective. I understood 6 cycles of chemo was fairly standard.

It may be worth asking your oncologist whether future chemo treatments would be a consideration if needed to supplement the immuno or whether they are happy the immuno will be effective on its own.

I’m hoping for a similar scan result and so far have felt well throughout. I was told the immunotherapy alone should continue to killing only cancer cells as opposed to the less targeted chemo.

Please don’t feel they’ve given up as I was told if it is working that the immunotherapy can be very effective in shrinking and controlling the disease. 

Wishing you both well and hoping for a positive result for you. You are certainly not alone.

Steve M

Hi Steve

Firstly thankyou so much for your reply, I am so sorry you are going through the same as Nick, I hope your scan shows some positive things. You were obviously told at the beginning of your treatment that you would have 6 cycles, I wish we had been informed and then it may not have come as such a huge shock.  Nick has coped so well with the chemo, no hair loss, other than a bit of sickness around cycle 3, which we put down to something being stuck in the stent, he had this put in before any chemo started and it has taken alot of getting used to with how many foods just don't fit down the stent! But other than that no sickness. The usual sensation on the iv arm and cold sensitive until about day 5 or 6. We assumed that if he could cope with it and it was doing its job he would keep fighting it. We have asked to speak to the Oncologist again and hopefully with a bit more of an explanation we can get our heads round it. Thanks again and keeping everything crossed for your results xx

Hi started a similar journey yesterday, same treatment but only 4 cycles of chemo with up to 35 cycles of Immuno. The nurse did expect the usual 6 cycles of chemo but said as the immunotherapy treatment is still fairly new (first one she had done) she expected things to change. I speak to my oncologist on 27th at the end of this cycle so will ask again about his strategy. I am surprised how well I feel, I know it’s early days, long may it continue for both of us!

I;m taking my last capecitabine for cycle 3 tomorrow morning then have my week off. I am amazed how well I have felt throughout 3 cycles with the exception of maybe one or two days.

The only real problems I've had is coping with cold and windy weather for the first week or so of each cycle due to the oxalipilatrin tingles which are a bugger. If anything my symptoms have improved throughout and I'm staying positive in my outlook with only the occasional low.

Tuesday will reveal how things are progressing and at the moment it feels as though I've tossed a coin on the day of my scan and am waiting a week to see which way up it lands.

I've found talking about the situation to family and friends is helping me deal with things and their support is invaluable.

Hopefully your treatment will also go well with regard to how you feel and as I've found a lot of inspiration on this forum so far I hope my own experience can help others who are starting their journey by reassuring them it may not be so awful as they expect. For me starting out was a step into the unknown with the expectation of every side effect known to man. Thankfully we're able to enjoy a relatively normal life for now and make the most of it.

Steve M

Good to hear Steve, made the mistake yesterday,day2, of going out for a walk in my shorts. Big mistake, didn't get too far but its a steep learning curve. Apart from that my only concern is a few instances of tunnel vision, only lasts about 10 secs before clearing. No real mention in the mammoth side effects list so will ring help line today. Like you I was expecting much worse. Good luck with the coin toss!

My hubby has just started Capox (sounds the same as Xerox) and herceptin, no immunotherapy. He is stage 4 and they have said he will stay on 3 weekly chemo as long as it is working and he is tolerating it.

Thanks for sharing Steve, my hubby is day 7 and also going quite well. Great to know you have continued to tolerate it.