Cancer has returned

Hi sue2809

You might like to read Gunfitter400 post as he has just referenced a recurrence on the bowel surgical margin . I have linked him in so hopefully you can connect .

My own mum has had a few recurrences but not in the bowel . One thing we did learn is the benefits of meeting with surgical specialists and hearing their opinions . It can often give you a bit more insight into what they can achieve .

Take care ,

Court 

Thank you for your reply Court. My surgeon has sent my scans onto the specialists. They’ll contact me if they think they might be able to help. Fingers crossed we get a meeting x

That’s great news that has occurred . Hoping this opens a door for you . That’s all it takes .

This happened with both my mum’s liver and lung . Holding out for a good option for you .

Court 

Hi Sue2809

My husband is currently going through chemotherapy for recurrant bowel cancer. We found this out back in June after him going in for the operation in January to have the tumour removed. He was told surgery was not an option in this instance I don't know why they can't operate this time I think it's because where it's sitting it's a bit awkward to get to, but the oncologist said it has come back in his bowel lining, so he is going through combination chemotherapy of Oxaliplatin by infusion and Capecitabine in tablet form he takes at home for 14 days. He is just coming to the end of his 4th cycle and up until the end of the 3rd cycle, he was doing really well with hardly any side effects at all the only side effects he's had really through the treatment was the neuropathy (pins n needles in the fingers and toes). Cycle 4 however, has hit him like a ton of bricks in that he has been really tired this time and it has affected him mentally in that he has just no get up and go and doesn't feel like doing much of anything. His appetite has been affected as he loves his food but in the last week, he has been eating very little or not at all. Because he tolerated the first 3 cycles so well, they upped his dosage of both the Oxipalatin and Capecitabine but don't know if this has backfired and its too severe now. We see the oncologist again next week so see what they say. 

Hi PattyK

Thankyou so much for your reply and thankyou for explaining your husband’s treatment. It’s reassuring to hear someone has had chemotherapy with few side effects. I’ve only ever heard the  horror stories that people go through but then I suppose if all is well then there’s less to tell. I am sorry to hear though that he is not so great with round 4 and hope he recovers well when it’s finished. I wonder ( I don’t know what the process is yet) do you see the oncologist in between each session ? Does your husband have scans in between too? I’m wondering about how they chart whether chemo is working or needs changing. Sorry for my ignorance and questions but I haven’t seen my oncologist yet so feel like there are so many unknowns ahead. Anyway, my best wishes to you both and thankyou again.

Hi Sue!

No, no problem we all get stuck on here with something we need to ask. Anyway, what I can tell you is, our- I say `our` because it's something we're both going through- our treatment routine is, Jay goes for his Oxaliplatin infusion once (usually a Friday but that can differ I suppose with everyone) he gets his meds home with him this consists of his Capecitabine tablets anti-sickness meds and anti-diahorrea  meds and a blood from he has to take to the GP practice to get bloods done on his `week off` treatment. He begins his Capecitabine on the evening after his Oxi infusion (Friday 5 tablets) then after that he takes 5 tablets in the morning and 5 tablets at night for 14 days and the anti- sickness and diahorrea tablets in-between if needed. They also give him steroid tablets to take, and he takes those for 3 days only after his infusion. They work out how many Capecitabine tablets he needs to cover the 14 days so the cycle will finish on the Friday morning at the end of the two weeks. He then has a free week as I said where he gets no treatment at all this is just to give your system a rest. In that week he goes and gets bloods done at our GP practice this is usually on a Wednesday and then we have our appointment with the oncologist on the Thursday and then the next cycle begins on the Friday again. The blood tests are to check if his liver and kidney functions are ok and his blood levels are good too and they will probably be looking for other things as well really everything with him has been good so far, He has been for a CT scan he went for that last Thursday so we will probably get the results of that next week when we see the oncologist again I think after a couple of cycle they do this to see how the treatment is progressing. We are absolutely `shitting ourselves` with that (pardon the french) because this is how we found out the cancer had come back he got blood tests in May this year at his follow up appointment with his surgeon and we got a letter to say that his CEA markers (tumour markers I think they call them) had risen and they wanted him to go back for a CT scan and this confirmed it was back. The surgeon was really upset at this because she was adamant that she and her team had done their damnest to get it all and scans showed it had all gone but then they say some cells which can be hard to detect can still get through. This is what happens with us Sue, but it may be different for you as not everyone's treatment is the same. I wish you well. Take Care

Vicky xx

Hiya Vicky 

Thankyou so much for taking the time to reply to my questions. It’s so useful to help to have an idea what might be coming our way and your response was really informative. It sounds like the treatment takes quite a few weeks of visits to GP’s and Hospitals. Quite an intensive time for you both. Do you manage any kind of normality through it all I wonder. We are both retired now so I’m hopeful that if the side effects are minimal ( fingers crossed) we can get on and enjoy life as much as is possible. I understand when you say ‘ our’ treatment… I feel the same as you that we are both going through this and it is hard on my husband ( though he never complains). It must be hard for you to watch your husband suffer with this round of treatment.

I’ve had a letter through with an appointment to see my oncologist in two weeks though I think this is a sort of discussion of what might happen if the other surgeons I’ve been referred to decide, like in your husband’s case,  that surgery isn’t an option for me. I’m not sure how I feel about going through surgery again if it is offered…it’s a daunting thought.

Anyway  Vicky thank you again . Best wishes to you both and hope your husband Jay feels like his usual self agin very soon xx

Sue x

Hi Sue!

No problem. Glad to help. Yes, it is hard to see him the way he is at the moment. This cycle of chemo has really knocked him for six and he is looking all his 68 years just now and more. His mobility is really bad, and he said he feels very weak and tired not a `sleepy tired` just physically tired if that makes sense. He finished this course of chemo meds yesterday so I am hoping for at least a few days he can build his strength up again. He was saying to me last night that he doesn't know if he can go any more rounds of chemo which at the end of the day is his decision, but I would like to see him continue even on a reduced dose which hopefully they may do with him this week and alter his dose if they think it is too fierce or he wouldn't be able to tolerate it. Then there is the worry though if they reduce the dose, will this reduce the effectiveness. He went for his Covid winter booster jag this morning and just about made it to the centre when we went in there was a que waiting and he thought we were going to have to stand for ages, but the line wasn't long in going down and the staff said to him if he needed a seat just to go and sit down after explaining to them what he was going through. But as I said, we were through in no time and actually out again before our appointment time. The oncologist told him it was very important that he did go for this jag especially as to how he is just now. We had to reschedule this because last time he had just had his Oxi infusion, and he was advised not to get the covid booster within 48 hours after the infusion which was when his booster was scheduled so this day (5th Novemeber) was the next one they had available. He had been doing so well at the beginning of his cycles and more or less sailed through them I've come on here and read of people who have just gone through one cycle, and it's floored them, but Jay has been through 4 already and it's just this last one that's really floored him. Mentally it hasn't affected him his mind is still sharp as a tack still has all his faculties about him doesn't get confused by anything its just the physical side and just feels he's no get up and go. This outing this morning was a `marathon` for him even though we were mainly in the car but that wee walk into the vaccination centre which was only yards away from the car took it out of him where before he would have thought nothing of it. I'm just hoping he picks up soon. Take Care Sue.

Vicky xx

Hi Vicky. 
Poor Jay. It sounds like he’s really going through the mill. Maybe when you see the oncologist on Thursday they will be able to explain what happens if the dose is changed back to his previous levels? Maybe it will still be ok so he feels able to keep going. I’m trying to be reassuring because I can see how worried you are.

I’m a similar age to Jay ( had my 69th birthday a month ago) , have limited mobility thanks to arthritis in my knees so use walking poles when out and about, and get a bit tired normally. My head however says I’m 42…so when I get tired or am not able to do something  because of poor mobility I get frustrated, so I do understand how Jay must feel if he is so physically drained. But hopefully as this week goes on he’ll pick up again and his motivation to keep going will come back. I’ll be thinking of you both.

Take care Vicky.

all the best

sue x

Thank you Sue xx