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Beating Bowel Cancer Community

Bowel cancer treatment and side effects

Cakey68

Post SIRT Scans

Hi all,

I have my post SIRT scans tomorrow and have never felt so anxious. I hate the MRI which I have to have diazepam to calm me down then I get my results on Friday ! Its going to be a long few days ..........

Best wishes

Lee

Cakey68

Happy anniversary and good luck next week .

Jen82

Thanks @Cakey68 ! 😊

Cakey68

Hi All,

The SIRT worked well but after my PET scan this week they found two small spots on my left lung ( one inside and one outside - 1 mm each) .

I was asked to be interviewed for Sky News Arabia to promote SIRT but after my news last night i declined. Wish i said i would still do it now...........!

I also have active lymph nodes in my chest and abdomen so surgery for the liver has been put on hold.

I am seeing my oncologist tomorrow to discuss a biological treatment . Has anyone else had this ?

Wish you all well.

Lee

Jen82

@Cakey68
Hi Lee,

I'm sorry to hear your update. Its good that these were spotted at 1mm and not bigger so that's I suppose one silver lining from what must feel a rather depressing scan...

I'm just recovering still from my SIRT. I've only had one dose, but they split it into two lots (with 6 week gap in between) as they were worried about how I'd manage on it. Must say, I'm finding it difficult and very worried to be off chemo all that time as I'm petrified that these gaps will have helped progression...they PET scanned me last week..

Re biological treatment, I had cetuximab. Unfortunately I had progression on it but others have seen fantastic results so like anything with this, it's a bit all cards up in the air. It's worked wonders I think for those it has worked for so I hope you join this group!

I hope you are doing alright and thanks for updating. Here's wishing you a really positive next meeting with your oncologist team to plan some successful next steps.

Jen :x:

Baxter2

Hi @Cakey68 I'm so glad your SIRT has worked well! I've had Cetuximab (about 24 cycles now I think!) and it's worked very well for me! The side effects are manageable. @Jen82 here's hoping for good results from your PET scan. When do you get the results? K💙💛💜💚❤️

Jen82

Hi K, @Baxter2 - the scan was done to check the position of the SIRT radiospheres in the tumour sites so unless there's some more bad news and they've spotted something else on the scan while they were doing it, I won't hear from them. BUT if they've spotted other things they can tend to phone and surprise me with news (which they've done before (rather distressing)) at any time. :x::x::x:

Baxter2

Oh i see @Jen82 so it's a case of no news is good news? Any scan creates such anxiety in us all doesn't it? I'm hoping you hear nothing but good news then Jen. Hope you have a good day! K 💙💛💜💚❤️

Cakey68

Thanks you for your replies . This forum is very good for supporting others and offering advice.

Thank you 😊

CD1966

Hi @Cakey68 - sorry to hear about your PET results picking up some small spots in the lungs but the good thing is that those have been spotted when very small so obviously treatable. Do you know which biological treatment you have had? My brother is being treated for small lung spots too at the moment. There are obviously quite a few people on here who have had these biological treatments with a good deal of success. It's obviously good news about the SIRT working.

Cakey68

Hi CD1966 and everyone else,

CD1966 - the Biological treatment is Avastine .

I saw on other Oncologist yesterday who has suggested i have 6 rounds of 5FU and Avasitine which i have had before and works well for me. Then Maintenance Tablets twice a day , every day for ever. the average time to have chemo again would be 20 months ...........

He said that i will always need chemo to push the disease back and the tablets to hold it back so i am looking at it as if was a diabetic .......

Does this sound familiar with anyone?

Wish you all well and keep up the fight . Its not over until the light goes out :x:

Clancy

Hi @CD1966, I am no oncology nurse but I was speaking to a lady the other day at the gym, she was waiting for her husband. He had bowel cancer with liver mets, both were resectioned and he is on chemo maintenance tablets for life. That was nine years ago, he is 84, and attends aqua aerobics, Pilates, yoga and tai chi. And he is a member of a walking group, incredible and unstoppable! , his philosophy is that cancer will have to fit into his lifestyle not the other way round. Hope this has inspired you, and good luck with your treatment.:x::x:

CD1966

Thanks @Cakey68 & @Clancy - that's how I keep telling my brother to look at it too. He had Avastin in 2015 with his Capox and it did work well. Sadly the NHS won't fund it again but now that he is back on Capox again we are thinking of paying privately for Avastin to add to it, which apparently can be done. It does seem to be very effective for many people on here. @Cakey68 once you have your new regime in place, I would be very interested to know exactly what it is so I can pass that info on to my brother.

Cakey68

I'm happy to report when I going out

CD1966

Thanks @Cakey68 - loads of luck with it! Crack on!

Cakey68

@CD1966 & @Clancy ...

My oncologist seemed surprised when I told him I hadn't slept properly for two night prior to seeing him as the results come from another oncon .

He said, why ?

I guess the maintenance is much better theses days and have age on my side (49) and a beautiful family.

I'll keep you updated regarding treatment progress .

Onwards and upwards !

Cakey68

@CD1966

I had my first cycle of this chemo regime on Friday 15.9.17 . I had Avastine with FOLFIRI (5-FU, Leucovorin). It lasted approx 3 hours and the side effect were no too bad compared other chemo i have had other than nausea and tiredness for three days.. I actually went to work the following day for 2 hrs then came home and slept . Still had a fairly active weekend with naps in between the went back to on Tuesday .

Hair is expected to thin but i have very thick hair so it should be the same as the other time i have had chemo .

I have 6 cycles book in but i was told at the hospital that they have me down for 12 so i guess in depends on my scans at the end of November .

How is your brother getting on ?

Regards

Lee

Cakey68

@CD1966

oh, forgot to mention the mouth sores ........

CD1966

Glad to hear you aren't feeling too bad @Cakey68 - being able to keep active is so important, isn't it, when you are on treatment? My brother has always felt that. He had FOLFIRI last year (though not with Avastin) and it did keep things stable to enable him to have his second liver resection and also then to have his hip replacement. As you know, once he was off the chemo to have those, he had some spots show up in his lungs and also they didn't get everything from the top of the femur with the hip replacement, so he is back on Capox (which he had in 2015), though again sadly not with the Avastin which he was able to have then. We are thinking of trying to pay for that privately at the same time as the rest of the treatment, as he really believes it made a different first time around as he had 75% shrinkage overall then.

He's been on that since June and a month ago had radiotherapy on the pesky femur bits to try to blast them to oblivion. He's just come back from a week's holiday in Cornwall so is feeling quite good, and still tries to keep his hand in with some work also. Now awaiting his next scan date with all the anxiety that brings, as you know. I'm guessing at some point they may want to operate on the top of the femur to put a replacement there, which they originally wanted to do when they did the hip but it meant a much longer recovery time before he could start his chemo, as it is a much more complex procedure, so his team wanted to get as much done as they could but still allow him to start chemo v quickly to halt the long spots in their tracks.

So glad to hear you're feeling ok with your first cycle - he sends his best and we're behind you all the way!

Quote from @Cakey68:
@CD1966

I had my first cycle of this chemo regime on Friday 15.9.17 . I had Avastine with FOLFIRI (5-FU, Leucovorin). It lasted approx 3 hours and the side effect were no too bad compared other chemo i have had other than nausea and tiredness for three days.. I actually went to work the following day for 2 hrs then came home and slept . Still had a fairly active weekend with naps in between the went back to on Tuesday .

Hair is expected to thin but i have very thick hair so it should be the same as the other time i have had chemo .

I have 6 cycles book in but i was told at the hospital that they have me down for 12 so i guess in depends on my scans at the end of November .

How is your brother getting on ?

Regards

Lee

Cakey68

Hi CD1966

Seem be living a fairly normal life . I QS and project manage so I can dip in and out and also work from home .

The second treatment made me feel really nauseous for 48 hrs but then subsided. Round three this week .

I get tired on the evenings and still manage a pint every couple of weeks .

I'm having treatment with a man who has been on maintenance for 11 years so fingers crossed .

Best wishes to your brother and he is lucky to have a caring brother.

Best wishes

Lee

CD1966

Hi @Cakey68 - great to hear an update from you and that you seem to be doing ok and able to live a fairly normal life. I know my brother regards that as really important, being able to keep doing the ordinary stuff and do work, etc. It sounds as if you're doing great! 11 years of maintenance chemo sounds amazing, and it seems that every month some new treatments are also discovered. Onwards and upwards!