Bowel cancer treatment and side effects

Wren17

Please help, changing chemo regime

Hi, I was placed on folfox as my first line of chemo but with severe side effects i was on reduced oxyplatin and 5fu pump from cycle 3 and in cycle 5 oxyplatin was taken off and I remained on reduced 5fu and panitumumab. I have completed cycle 12 now in my current regime (chemo is for life however long that is) but the disease has spread and yet i am still on the same regime and therefore i was wondering if this was normal or if i should have already or should be changing regime as this first line appears not to be tackling the disease? All advice will be most appreciated.

Tiffany

@Wren17. By the way I can see that you've not had an answer regarding your staging question. I am not sure why you were told that you were Stage 3. As far as I'm aware if the cancer has spread from one area to another i.e. Lymph nodes or peritoneum then you are automatically staged at 4. I think you were given the wrong information at the start. Tiffany :x:

Liriodendron345

Hello @Wren and @Tiffany, apologies for wading in here, but I believe that Stage 4 is only when the cancer has spread to other organs such as the liver. It’s presence in the lymphatic system is described as Stage 3. It is confusing but is clearly described in BBC Publication below (p 12), - helps me to understand but not necessarily remember! Take very good care, Kim xxx

www.beatingbowelcancer.org/...owel-Cancer-Treatment-Pathway.pdf

Liriodendron345

Hmmmm, now having read your profile properly @Wren, I am guessing that involvement of para-aortic lymph nodes is what has led to the Staging of 4. as this is away from site immediately next to Bowel? Sorry if I have confused everything, Kim :x::x::x:

Wren17

Hi @Tiffany and @Liriodendron345 thank you both for your reply. I also have tumour in peritoneum as well as the lymph nodes in para-aortic and superior messentric artery but ill ask my oncologist for clarification. In regards to treatment oncologist said I’d had severe side effects and there was no alternatives for my regime? I’ll ask again about alternatives. Thank you both. It’s been hard trying to come to terms with the cancer and the fact its spreading and no alternatives to treatment has really been freaking me out. I’ll try to be brave and ask for second opinion about treatment. :x::x:

Liriodendron345

Hi @Wren17, I think you are absolutely right in asking for a second opinion. There are many stories on here where a second line of attack has had very positive outcomes. No magic bullets on the whole, but we know that. Some folk on here are for example on irinotecan alone. I’m tagging my long distance chemo buddy @Baxter2 it might help to read her profile and approach to second opinions ...... she is awesome, - but don’t tell her!! Kim :x::x::x:

Baxter2

Good morning @Wren17 and thanks for the tag @Liriodendron345 ............and compliment! ?

In my humble opinion based on experience and knowledge gained along the way, it’s certainly time for more action with regards to chemo and approach. Ideally, your oncologist will decide to change your chemo but if there’s resistance at all (and even if there’s not!) it’s probably a good time to seek a second opinion I’d say even if only to reassure you that you’re on the right path!

Do you have a scheduled appointment soon with your oncologist? If so, make sure you take a trusted other pair of ears with you who is willing to contribute to the consultation too. I think arming yourself with written, carefully thought out questions to be answered, would be a good idea too. Does your oncologist copy you into correspondence and forward reports to you? I know this approach isn’t for everyone but I found it very empowering and took this a step further in requesting and obtaining all my medical records, images and reports.

Don’t be afraid to ask and challenge in a positive way. It’s your life and sometimes we have to be our own advocate in our quest to leave no stone unturned.

Good luck!

Lots of love,

K????❤️

Daffodil

@Wren17 - I don't know whether this is relevant, but my husband also had a severe reaction to both Folfiri and Folfox due to a genetic difference that made him allergic to the 5Fu part of the chemo. He has gone on to have 3 other types of chemo since then. I agree with the others, usually if one chemo doesn't work they try something different. Lots of questions for you to ask! :x::x:

Wren17

Hello @Tiffany, @Liriodendron345, @Baxter2 and @Daffodil. With all your support i contacted oncologist and clarified my cancer staging which i was devastated to learn was stage 4 having previously been told it was stage 3c but even more heart breaking was i asked if i could be referred for special funding for Avastin as im classed as inoperable and stage 4 (which is criteria on cancer fund website) but was told in no uncertain terms that this would be A) a waste of time as no one with bowel cancer is awarded the funding for Avastin, i suggested no harm in trying but was firmly met with Ive tried in past and it didn’t happen so no point in bothering with referal and b) was told Avastin was not very effective anyway and that is why it was replaced and there are many alternatives to it. So when i asked what alternatives there was for me as i had been on same regime, significantly reduced with latest scan showing new spread i was told latest scan was different tpe of scan and so we had to wait for next CT to see if it had actually spread as different scans pick up different things and so comparing two different scan types to show spread is not right and only if next CT confirmed spread then they could think about different regime? But to my horror i was told that as a stage 4 patient i would need to accept that at some point chemo would stop working and so that is when treatment would need to stop. Is it just me or does anyone else get the feeling that i have been written off?

HH79

Hi @Wren17 @Liriodendron345 @Baxter2 @Tiffany. So sorry Wren you’re really in it and I don’t think getting very good support. Lymph wise, para aortic lymphs is Stage 4 as the lymphs have ‘travelled’ along the lymph chain - mine was same and following month confirmed Peritoneal spread too. But bollocks to all this techi stuff, need to plan way forward! Defo defo defo get a second opinion and new start. Where are you based? I’ve some knowledge of good cancer centres would recommend. There’s other things out there - youre not BRAF are you? If not certain mutations you can have Cetux which works well. I’ve also been told Capecitabine tablets for 3m are same efficacy as 5FU for 6m so that’s a thought? And I see you’ve had Folfox but not Folfiri eg you’ve not had irinotecan? A lot have good results Folfiri and in combo Cetux. Get a list of qu’s for you 2nd opinion too good luck :x::x:

Alwyn

Hi @Wren17 I was horrified reading through your thread. Of course there are other options they could explore. I see from your post to the nurse that you are Kras wild which means you could have been offered cetuximab. It's a treatment with some good results. There is also irinotecan and capecetibane combined as capiri. There is also lonsurf which is fairly new.
I have just started my fifth year of treatment (stage4) and I have had something slightly different every year and have the possibility of trials also.
I personally would change my oncologist. :x::x::x:

Wren17

Hi @HH79 im in Birmingham. I’ll ask my GP to refer me for a second opinion and would welcome any advice in regards to any centres or consultants you would recommend for approaching. I don’t think im BRAF, think I am Kras Wild type. I did ask about irinotecan as alternative to oxyplatin but was told no. In fact been told no to everything. I’ll make a list of the drugs you’ve mentioned and ask when i get appointment for second opinion :x::x:

Wren17

Hi@Alwyn, hearing you’ve started your fifth year of treatment at stage 4 certainly gives me hope. I’ll look into the drugs you mentioned and take these along to my GP when i ask about second opinion :x::x:

HH79

Hi @Wren17 I know @Buzylizzy is up that way and she could recommend and you’re not too far from Oxford that’s a cancer excellence Place the Churchill. How old are you if you don’t mind my asking? :x::x:

Buzylizzy

Hi @Wren17 . @HH79 tagged me as I’m also up here in B’ham. Which hospital are you under? You can private message me if you’d like to. :x::x:

Buzylizzy

Just to add @Wren17 I have an amazing oncologist who will go to the ends of the earth to help me. He’s supported by a great team of nurses and I wouldn’t be here if it wasn’t for them given that I was told by a different oncologist I had 20m and that was 2 and half years ago :x::x:

Wren17

Hi @HH79, thanks for tagging Buzylizzy. I’m 37 years old :x::x:

Wren17

Hi @Buzylizzy. Thanks for your message. It’s reassuring to know there are oncologists out there who will go to ends of the earth :x::x:

Baxter2

Hi @Wren17

I’m stage 4 and was started on Folfiri and Cetuximab when my adjuvant chemo of Capecitabine and Oxaliplatin did not work for me when I was initially diagnosed as stage 3.

I’ve now had 34 cycles and there’s evidence that it’s still working. I’ve been told by my oncologist of the next chemo planned when it stops working for me. I’m still classed as on 1st line treatment.

Good luck with the GP discussion. It looks like you’ve an army of us right behind you now! @eyeofthetiger will need to get her patient supporters bus out of the garage once again! ?

K????❤️

HH79

Good luck @Wren you’ll get better joy elsewhere but perhaps in meantime phone your Onc and ask why not Folfiri, Cetux when it’s grown on Folfox? :x::x:

Wren17

Hi @HH79, I’ll ask about Folfiri and Cetux thanks :x::x: