Folfox (AGAIN) + Panatumumab

[jep]

Good morning! So my husband's brief stint (3 infusions) on the Phase 1 Clinical Trial has come to an end. We met with 2 different oncologists and they both agree that he should go back to more standard types of chemo (ones that he responded to in the past). He has been on both Folfox and Panatumumab before, but not at the same time. His oncologist would like to start him ASAP (January 2nd) at a reduced dosage (25% less) for each drug. My husband is still recovering from surgery and his hemoglobin level is 8.0 . . . he is going to an infusion of 1 unit today, so hopefully that will boost his energy level a bit.

Honestly, I'm not convinced that the immunotherapy trial was not working. I still believe that the tumor "growth" (or swelling) was pseudo progression . . . I'm thinking about writing a letter to the doc at Smilow to ask him to take another look at everything . . .

I'm glad that my husband was able to come home for Christmas, and that I can easily take care of him in the comfort of our own home. Has anyone gone back to previously tried chemo regiments? Just wondering if we're heading in a good direction . . .
Thank you,
jep

[Rock_Robster]

Hi jep,

Two questions that might help with answering:
1. how long since his last dose of the previous chemo regime he is considering rechallenging?
2. why did he stop this regime previously? (eg progression, surgery, side effects)

Thanks
Rob

[jep]

Hi jep,

Two questions that might help with answering:
1. how long since his last dose of the previous chemo regime he is considering rechallenging?
2. why did he stop this regime previously? (eg progression, surgery, side effects)

Thanks
Rob

Hi Rob!
So, my husband ended his 6 months of folfox in January of 2018 . . . he stopped folfox because his 6 months were up and he had clean scans and scope . . .
He started Irinotecan + Panatumumab in 11/18 (after some nodes lit up on a scan) . . . Honestly, I can't remember if he did 3 months or 6 months . . . I will check . . . He stopped this regiment in order to have some radiation to his colon (with xeloda) in preparation for a curative surgery (which was aborted after realizing that a node is actually wrapping around his vena cava . . . ) . . .

[Rock_Robster]

Hi jep,

Two questions that might help with answering:
1. how long since his last dose of the previous chemo regime he is considering rechallenging?
2. why did he stop this regime previously? (eg progression, surgery, side effects)

Thanks
Rob

Hi Rob!
So, my husband ended his 6 months of folfox in January of 2018 . . . he stopped folfox because his 6 months were up and he had clean scans and scope . . .
He started Irinotecan + Panatumumab in 11/18 (after some nodes lit up on a scan) . . . Honestly, I can't remember if he did 3 months or 6 months . . . I will check . . . He stopped this regiment in order to have some radiation to his colon (with xeloda) in preparation for a curative surgery (which was aborted after realizing that a node is actually wrapping around his vena cava . . . ) . . .

Thanks jep,

Given he didn’t have progression on FOLFOX, and it’s been well over 6-12 months since last exposure, I’d say there’s a very reasonable argument to go back to it if current therapy isn’t effective.

I can’t comment on the timing/effectiveness on the Panatumumab side sorry, but no doubt others here can.

Good luck!
Rob

[stu]

My views are there is nothing to be lost on returning to more standard treatment at this juncture as he seems to have positive results .

However I hear what you are saying about the trial . I can understand an oncologist wanting to use a treatment that they are familiar with which has also done a good job but it would be interesting to know what an oncologist with more experience of the trial thinks . Is it something they are seeing a lot but can work through ? How do they decide between true progression and pseudo progression . I think these are valid points to investigate for the future .
Given your husbands recent hospital admission it’s a possibility to use what works to gain the upper hand then look into other options for further down the road .

Nothing lost in asking reasonable questions .

Take care ,
Stu

[jep]

My views are there is nothing to be lost on returning to more standard treatment at this juncture as he seems to have positive results .

However I hear what you are saying about the trial . I can understand an oncologist wanting to use a treatment that they are familiar with which has also done a good job but it would be interesting to know what an oncologist with more experience of the trial thinks . Is it something they are seeing a lot but can work through ? How do they decide between true progression and pseudo progression . I think these are valid points to investigate for the future .
Given your husbands recent hospital admission it’s a possibility to use what works to gain the upper hand then look into other options for further down the road .

Nothing lost in asking reasonable questions .

Take care ,
Stu

Yes, thank you Stu . . . my husband has been working with 2 oncologists (both within the Smilow system) . . . one is a member of the clinical trial team and the other works with more standard treatments. The trial doc felt that the immunotherapy was not working, but admitted that there is no way to know for sure that this was not pseudo progression (w/o, I suppose, moving forward with the trial to see what happens). His thinking is that my husband could continue with the trial if there were no other options left for him; but after reviewing his case, he feels that my husband did really well on Folfox and Panatumumab, so why not get back on those to get the tumors under control (?)
He also said that once they get things under control, my husband can always come back and see what other trials might be available for him . . .

I'm still questioning the pseudo progression . . . I've researched it a bit and it typically happens w/in the first 1-3 months of immunotherapy . . . that's exactly where my husband falls . . . also, the clinical trial onc said that pseudo progression typically occurs within patients who appear well and have no symptoms . . . well, prior to this blockage (caused by swelling of the tumor on his colon) my husband looked and felt great . . . he had really no symptoms or side effects from the trial . . . he was doing so well and this blockage came out of nowhere . . . colon cancer is slow growing right, so how could this be tumor growth? I just don't understand how this is not considered pseudo progression . . . anyway, I do think it's important right now to get my husband back into treatment . . .

One last point made by the clinical trial onc was that immunotherapy (even when it doesn't work) can change the genetic makeup of tumors and make standard chemo more effective . . . . please let that be the case with my husband . . . thank you all!!
jep

[stu]

That’s very interesting. Whilst on holiday I read a book about a neuroscientist’s journey into insanity and her recovery . It turned out she had two cancer diagnosis. One primary breast which was treated with a mastectomy and the second a melanoma which had spread . She was about to start immunotherapy but her sister a Dr got a radiologist she knew to review her scans and He noticed tiny spots in her brain . This would have ruled her out of using the treatment due to the inflammatory response within the brain tissue .

She rolled the dice and did not tell her treating team what the second opinion had discovered and went forward with the treatment . The inflammation in her brain mets caused such amounts of swelling she descended into insanity. She died her hair purple but forgot to wash it out , went out for a jog with purple dye dripping down her face and her prosthesis was still at home . She was had no insight . Became aggressive and paranoid and this continued until her sessions were over and the swelling reduced .
It did also cure her and she remains well and her cognitive processes returned . It was such an interesting read but a very dangerous approach. However she knew without it her chances were slim .
She did not have very many sessions of treatment to achieve this response . But the inflammatory response was her biggest problem .
It’s so interesting to hear that it can change your cell type . My lovely friend has had a year of treatment for a primary lung tumour with a spread everywhere and it has done a wonderful job . She is now just using Keytrunda but has one very small area appearing which they will use radiotherapy for . She battles more with the mental health aspects than the physical ones as she has three younger children , one with a learning disability. But it’s amazing to see what’s being achieved and still making discoveries about how it works .

It does seem impossible to know what the origins of the swelling are but I am holding out that it’s done some good and chemo can also impact it . Other primaries are using a combination of chemo and Keytrunda initially to get a response and then dropping chemo .

My mum only ever used the same chemo to treat her spread and it worked both times .

Take care ,

Stu

[jep]

Wow Stu . . . that story is incredible . . . will you share the title please?

[stu]

“The Neuroscientist Who Lost Her Mind”by Barbara K. Lipska

No idea why I selected it for my summer reading but I was not aware at the time that I would understand so much of her journey .

Worth a read . She also discussed dyslexia which my son has so was very interested in the Neuroscience behind that and addressed temporal lobe function within an elderly population and how they are better processing one clear command at a time . It’s so true . I use it all the time with my parents where before I issued four or five in the one sitting .
Take care ,
Stu

[claudine]

Thanks for the ref Stu, I may order this book for my daughter who's majoring in neuroscience - especially since her dad has cancer (albeit not brain; I sure hope it never metastasizes there!).

[stu]

Hi Claudine ,

That’s great to hear . It’s such an interesting story as it gave her more insight into her work .
I think she heads up a neuroscience department !

I hope your husband is doing ok .
Stu

[claudine]

Thanks Stu! He's got an appointment with a urologist on the 9th to discuss the laparoscopic removal of his left adrenal gland + tumor. Starting 2020 by getting rid of some cancer, I like that!