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Gary12345

I think more chemo but hoping for alot tbh

Just wondering has anyone known a persons tumour not to skrink after going through Folfoxiri 3months and 5 weeks radiation . Like from what I seen on this forum.... Folfoxiri is a heavy weight and for a tumor to still grow while getting that type of treatment makes me scared. I have searched on reddit & this forum and no similar stories. I'm fully sure my dads tumor was 8cm bk in March and we've been told it grew significantly despite all the treatment. Anyone know anyone that has been in a similar situation ??????

louise28

hi @Gary12345 I was about to reply to your other post and saw this. I see that @Frances Styles gave you some helpful info. Honestly, my view is that doctors are onlt human and no harm in getting a second opinion. I have one life, two small babies that need me and while I hate asking for more and hassling people, I know that if you don't speak up, you can just get ignored.

Why not make an appt to see your dad's GP and ask for advice? Or ask the oncologist fir referral? Oncologist may also have suggestions of who you could speak to. In your case a colorectal consultant/surgeon is prob the first port of call given that your dad has not had the main tumour removed yet.

As for FOLFOXIRI, I haven't had this combination but I know it is considered the big guns. What I would be asking the team is what chemo your dad will get, and whether he is suitable for any of the biological treatments like cetuximibab and others...have they tested his tumour for mutations (I.E BRAF, KRAS) If he doesnt have these mutations, he may well be able to have some other drugs in connection with his chemo

:x::x::x:

Baxter2

Good morning @Gary12345

I'd be inclined to agree with @louise28 and pursue an appointment with your dads Oncologist or/and accompany him to his appointments if possible? It sounds like you have a lot of perfectly valid questions needing answered.

Sending lots of love

Karen πŸ’›πŸ’šπŸ’™β€οΈπŸ’œ

Gary12345
Quote from @louise28:
hi @Gary12345 I was about to reply to your other post and saw this. I see that @Frances Styles gave you some helpful info. Honestly, my view is that doctors are onlt human and no harm in getting a second opinion. I have one life, two small babies that need me and while I hate asking for more and hassling people, I know that if you don't speak up, you can just get ignored.

Why not make an appt to see your dad's GP and ask for advice? Or ask the oncologist fir referral? Oncologist may also have suggestions of who you could speak to. In your case a colorectal consultant/surgeon is prob the first port of call given that your dad has not had the main tumour removed yet.

As for FOLFOXIRI, I haven't had this combination but I know it is considered the big guns. What I would be asking the team is what chemo your dad will get, and whether he is suitable for any of the biological treatments like cetuximibab and others...have they tested his tumour for mutations (I.E BRAF, KRAS) If he doesnt have these mutations, he may well be able to have some other drugs in connection with his chemo

That's what I'm gonna do then cause searching around for similar stories is no use . I Rang the oncologist department yesterday my dad's oncologist wasn't there .Thanks tho @louise28..... They're definitely the questions I'm gonna ask and I dont care ill keep ringing their phone until I know what's going on .....Hopefully they'll be some positive update on this from me for once πŸ‘

Gary12345
Quote from @Baxter2:
Good morning @Gary12345

I'd be inclined to agree with @louise28 and pursue an appointment with your dads Oncologist or/and accompany him to his appointments if possible? It sounds like you have a lot of perfectly valid questions needing answered.

Sending lots of love

Karen πŸ’›πŸ’šπŸ’™β€οΈπŸ’œ

Thanks @Baxter2 ya i definitely will. F*ck that waiting and waiting that would drive ya mad .. Will keep this form updated thanks Baxter2 lots good wishes and love bk at youπŸ’›πŸ’šπŸ’™πŸ’œβ€πŸ‘

Gary12345

Rang the oncologist department yesterday and the secretary took my details and emailed my dads oncologist.....I was really Hoping she'd ring me today.......So after waiting all day for a call..... I decided to ring again today only to find out they're off at 4pm....... .So I'll have to wait till tuesday and even then will get in contact i don't know?. ....I am soo angry 🀬🀬🀬. ... like I honestly think they're soo vague and elusive......

louise28

hi @Gary12345 it's frustrating but I've found being persistent the only option. Otherwise it's hard to get call backs etc. If your dad has an oncology nurse or clinical nurse specialist you should be able to contact them directly. I have the mobile number of the nurse specialist and can text or call with any questions :x::x::x:

Gary12345

Thanks @louise28 your such a good helpful person god bless ya πŸ€—.....ya I rang the oncologist nurse she gave me the oncologists secretary number but now i have to just wait til Tuesday and ring again ...I'm just scared if that goes anywhere because its seems like a really resistant form Cancer and that makes me sick .

louise28

I hope you get news soon @Gary12345 you should have a person to contact.
I dont think you can know exactly about the cancer but hopefully there will be more things the team can do. I would push for second opinion and also ask about mutations and whether other drugs can be added. :x::x:

Gary12345
Quote from @louise28:
I hope you get news soon @Gary12345 you should have a person to contact.
I dont think you can know exactly about the cancer but hopefully there will be more things the team can do. I would push for second opinion and also ask about mutations and whether other drugs can be added.

@louise28 Ya my sister rang this morning and they said they've already told Me your bother Gary to forget about the old date? And that theirs a new date? By the nurse manger ? Thats news to me cause their wasn't even a date to start with . Like I wouldn't be ringing repeatedly if their was a date . I think they know they've made a mistake or its Incompetence!.. You're suppose to have confidence in the people to help you and if needed ring them or in doubt so they can find out whats going on . I rang the other day asking about my dad's oncologists availability and who ever answerd said she wasn't their at the moment and thats fair enough understandable its a busy tough job but I then asked whats a good time to ring and she said its never really a good time to ring.....Like how is that any good to anyone?????....Sorry for the rant but their should be a treatment update person to get answers.....

Baxter2

Oh dear @Gary12345 This sounds very frustrating indeed!! If you and your sister are really feel you’re getting nowhere, you have a right to request all dads scans, reports and records and it’s normally free. I’m in the process of doing this for my mum as information is just not forthcoming at all. I’ll use this when liaising with the private sector too for a second opinion. It’s not for everyone but it’s your dads health and your dads business. Obviously have a chat with dad about it all as you’ll need his consent of course to advocate on his behalf.

Please keep us posted if you can?

Sending lots of love,

Karen πŸ’šπŸ’›β€οΈπŸ’œπŸ’™

Gary12345
Quote from @Baxter2:
Oh dear @Gary12345 This sounds very frustrating indeed!! If you and your sister are really feel you’re getting nowhere, you have a right to request all dads scans, reports and records and it’s normally free. I’m in the process of doing this for my mum as information is just not forthcoming at all. I’ll use this when liaising with the private sector too for a second opinion. It’s not for everyone but it’s your dads health and your dads business. Obviously have a chat with dad about it all as you’ll need his consent of course to advocate on his behalf.

Please keep us posted if you can?

Sending lots of love,

Karen πŸ’šπŸ’›β€οΈπŸ’œπŸ’™

@Baxter2 Thanks very much Karen ill definitely keep all opinions open πŸ‘. Honestly
I totally understand the circus chasing 😀😠 But My dads oncologist actually did ring me tonight not good news tho but I still believe mybe something different can happen .....I put up what she said in a latest post. Sending love and good wish to you too Karen πŸ‘β€πŸ’›πŸ’œπŸ’™

Baxter2

Oh that's such good news that she called you @Gary12345! Doesn't it make a huge difference when communication is forthcoming. I'm sorry it's not good news though amd hope there are options ahead.

Sending lots of love

Karen πŸ’›πŸ’œπŸ’™β€οΈπŸ’š

Gary12345
Quote from @Baxter2:
Oh that's such good news that she called you @Gary12345! Doesn't it make a huge difference when communication is forthcoming. I'm sorry it's not good news though amd hope there are options ahead.

Sending lots of love

Karen πŸ’›πŸ’œπŸ’™β€οΈπŸ’š

@Baxter2 Ya it really does make a big difference knowing where you stand and what options that you can look at or are being looked at and for her to ring me at 8pm despite hearing bad mixed news of things aleast i know some things . ..Cause its soo bad for moral and optimism being in Nomans land. Ya please God just a glimmer of hope down the line would be brilliant 🀞......Thanks Karen will keep this updated if I hear anything else sending love & good wishes bk at you β€πŸ’›πŸ’šπŸ’™πŸ’œ