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bad news

Posted: Mon Oct 11, 2021 8:48 pm
by worriedson714
Hello all ,
So my dad's scan showed his tumor is growing basically the same as it did before chemo which is heartbreaking news for us . I am sure someone has been in this situation should I expect the oncologist to cancel chemo weds ? It's only been 5 cycles we are hoping maybe it's just to soon to see results from the chemo ? Any help I will be grateful just hate going into oncologist appointments have no idea what's going to happen I like to be prepared with questions .

Re: bad news

Posted: Tue Oct 12, 2021 2:00 am
by stu
Hi ,
Sorry to hear his tumour has grown ! That is very disappointing news ! However there is a subgroup of patients do respond to second line treatment ! I would expect they will consider switching or wait a bit longer on this chemo.
Is there a surgical option !
Take care ,
Stu

Re: bad news

Posted: Tue Oct 12, 2021 9:44 am
by claudine
It is very difficult to hear that chemo isn't doing its job. But like Stu said - if this was first line treatment, there are other options. My husband failed Xelox (Xeloda + oxaliplatin), but responded very well to Folfiri + Avastin. Maybe the opposite for your father?

Re: bad news

Posted: Tue Oct 12, 2021 1:18 pm
by worriedson714
stu wrote:Hi ,
Sorry to hear his tumour has grown ! That is very disappointing news ! However there is a subgroup of patients do respond to second line treatment ! I would expect they will consider switching or wait a bit longer on this chemo.
Is there a surgical option !
Take care ,
Stu

This is second line he had folfox a few years back so hopefully there is a 3rd line I am praying for one and surgery they say would be tough cause of location same as radiation . They could be done but surgery carries a risk of not getting it all and radiation they said is 50 percent likely to damage small bowls so other options look bleak . See oncologist tomorrow I am expecting the worse .

Re: bad news

Posted: Wed Oct 13, 2021 4:43 am
by stu
So sorry , the way I scrolled back I did not see your signature !
Hope today brings some options . I notice some people are using Immunotherapy in trials in the U.K. even although they are not MSI . I think the theory behind it if sufficient tumour mutation burden is reach it may become an option! Might be worth finding out plus get the proper science from someone reliable . Ha !
take care ,
Stu

Re: bad news

Posted: Wed Oct 13, 2021 11:48 am
by catstaff
In the US at least, clinical trials for immunotherapy for MSS tumors generally include some experimental drug or vaccine to try to prime the immune system. PD-1 inhibitors almost never work alone for immunologically "cold" tumors, which most colorectals are. I am pretty hopeful that one or more of these approaches will work, but it may be a while before we know.

Re: bad news

Posted: Wed Oct 13, 2021 2:16 pm
by stu
Catstaff
You clearly have a finger on the pulse so I will run it by you and see if this lines up with what you are saying .
It’s a Phase 3 trial ! Leap-017, adenocarcanoma
Lenvatinib and Pembrolizumab the other arm being Lonsurf with regorafenib .

Does that sound about right ! Am I grasping this ???
Would love to know if I am getting the plot on what they are trialing ?
Thanks for your time !
Stu

Re: bad news

Posted: Thu Oct 14, 2021 2:55 pm
by catstaff
It appears that lenvatinib is a multikinase inhibitor that particularly works on VEGFR kinases, so a sort of super-Avastin. It is being combined with pembrolizumab (Keytruda) for several cancers and just got FDA approval for endometrial cancer, according to Dr. Google. The LEAP abstract claims lenvatinib increases the "good" white cells (the ones that attack) and decreases the "traitor" ones (the ones that tend to protect the tumor) since VEGF, among its other activities, seems to affect the immune system.

They would be comparing it with a more standard third-line treatment in this case (Lonsurf+regorafenib).

Re: bad news

Posted: Thu Oct 14, 2021 3:23 pm
by worriedson714
Catstaff how does one go about finding these clincial trails ? oncologist suppose to have clinical trail people call us hasn't happened yet .

Also anyone have experience with photon radiation ? Got a appointment for my dad with a photon radiation center

Re: bad news

Posted: Thu Oct 14, 2021 5:13 pm
by catstaff
https://clinicaltrials.gov

(Proton beam. X-rays are photons :-) )

Re: bad news

Posted: Fri Oct 15, 2021 1:43 am
by stu
Thank you so much catstaff . That is very helpful and I am passing it along to someone who may benefit !
Stu

Re: bad news

Posted: Sat Oct 16, 2021 7:51 am
by DarknessEmbraced
I'm sorry his tumor grew. *hugs*

Re: bad news

Posted: Mon Oct 18, 2021 8:51 am
by stu
Hi ,
Just wondered how your dad is doing ? Is he any further forward with his consultations ?
Hope your holding up ok !
Thinking of you both !
Stu

Re: bad news

Posted: Mon Oct 18, 2021 6:50 pm
by worriedson714
stu wrote:Hi ,
Just wondered how your dad is doing ? Is he any further forward with his consultations ?
Hope your holding up ok !
Thinking of you both !
Stu

He has a lot of appointments coming up proton radiation Consult Oct 27th Nov 3rd out radiation oncologist Nov 7th another oncologist working on trails waiting for call back we on vacation now dad wanted to go before medical stuff but now he is having confusion and sedation problems from a oxy and Lyrica increase Me I am a mess I don't think I can handle losing him

Re: bad news

Posted: Tue Oct 19, 2021 2:36 am
by stu
So sorry to read this !
I am hoping that some of these options you are investigating help prolong his life !
My mum is the same with an morphine based meds . Knock her right off ! You might need to speak to his team about them . Some people are just really sensitive to opiates !
Mortality is a wrestle most of us struggle with ! Speak to your GP if required as your health matters too!
Much love ,
Stu