The Colon Club

I find it interesting that many patients (including myself) are told there is no relationship between chemo side effects and response - i.e. having more side effects does not predict a better response. This is even published by the peak cancer body in my country.

However after some reading, it does seem that there is a pretty decent correlation - particularly between the number of side effects experienced (more is better) and the timing (earlier is better). Neutropenia seems to be the most correlated, especially if experienced early (within first few cycles). Severity of side effects doesn’t seem to be predictive however, so the best scenario seems to be to get many side effects, early, mildly.

I realise this is not a guarantee of a response, but I’m surprised this isn’t discussed more. Perhaps they don’t want to worry the (lucky) patients that don’t have major side effects, and have them seek higher, potentially toxic doses?

I asked my onc and he confirmed that indeed he doesn’t like to see his chemo patients looking “too well” (lol), especially given the uncertainties around optimum dosing.

Anyway, knowing this really helped me when I did experience side effects - knowing my chances of a response were better.

Can you post relevant studies?

My experience with FolFox and erbitux was not bad. Didn't have neutropenia, neuropathy was manageable, hair loss and rash was tolerable. I did get very good results, most of my tumors shrunk 50%.

But I have to agree, when I was dealing with the rash, I was quite happy thinking the treatment must have worked!!! I was happily putting on my moisturizers and stuff....

Pyro70 wrote:Can you post relevant studies?

Of course:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5379656/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2361647/

[not CRC] https://bmccancer.biomedcentral.com/art ... -2407-4-48

I believe I had one more CRC-relevant; let me see if I can dig it up and will update.

And lovelife, indeed Erbitux is another great example of side effects correlating to response - albeit with targeted therapy rather than chemo.

Side effects simply reflect the particular regimen's characteristics and a person's particular reactions. Some regimens may have additional effects associated with success but that is not a general requirement.

My wife did not suffer additional overt side effects at various times when things necrosed or dissolved. For 8 years, she only found it necessary to tolerate the minimal side effects of oral 5FU-LV tid at levels less than MTD, side effects reduced by various nutrients, inhibition promoted by mild drugs and special nutrients. In some cases, her side effects were reduced when inhibition might appear to be promoted by new components. In fact her 5FU chemo drug, originally branded UFT, has a natural type metabolite that makes you feel better in reasonable doses and also claimed to inhibit HIF-1a ...

One area where I think oncologists stray from patient optimal is Maximum Tolerated Dose to achieve maximum effect due to their paucity of approved active ingredients, often with large side effects. With more choices of low toxicity or even side benefits, a selection for optimal additive benefit becomes possible. For example, after preliminary optimization my wife didn't need MTD for 5FU, LV or other components to achieve inhibition of metastasis or dissolution of lesions - we could add milder or beneficial components. We could maintain her blood profiles in normal ranges and her visual presentation in an improved state over her non cancer peers, much less those patients temporarily on adjuvant treatment.

We were kinda upset to hear this morning that DH would get his 9th Folfiri treatment postponed by a week because of neutropenia. But then I found this article:
https://medivizor.com/blog/SampleLibrar ... al-cancer/

And he gets to enjoy a week without feeling blah, so maybe it's for the best?!?

Claudine wrote:And he gets to enjoy a week without feeling blah, so maybe it's for the best?!?

Absolutely Claudine! Neutropenia does seem to be one of the more useful predictive side effects, and after 9 rounds a week off will be great! And it doesn’t seem to make a material difference clinically from what I’m told.

I had neutropenia requiring postponement of FOLFOX starting after cycle 3 or so, and FOLFOX didn't do a damned thing for me. Both my platelets and my ANC were a problem, the latter being treatable with neulasta.

More relevant was that I am MSI-H with KRAS which makes me unlikely to respond to FOLFOX. I now know.

Other than low blood counts, my side effects were relatively mild, with extreme fatigue and diarrhea but no real nausea. I did have cold sensitivity from oxaliplatin and developed neuropathy around cycle 10 or so.

Claudine wrote:We were kinda upset to hear this morning that DH would get his 9th Folfiri treatment postponed by a week because of neutropenia. But then I found this article:
https://medivizor.com/blog/SampleLibrar ... al-cancer/

And he gets to enjoy a week without feeling blah, so maybe it's for the best?!?

Wow I was so encouraged by reading that article! I got neutropenia on the 2nd round... I was so defeated mentally. I didn't postpone my treatment though, I went ahead with 80% dosage and my white blood cell went back up by double with diet and exercise in the following round...

My husband is on Day 13 of 28 Xeloda Radiation in hopes he can then have surgery. How do I know if he has neutropenia? He is feeling nauseous (since Day 1) off and on, and fatigue is setting in a bit. How will I even know that this is working? No other symptoms, but maybe this is still “early” in the treatment/rounds?

Hello SilverWedding,
I don't think that there's an obvious way to diagnose neutropenia beside a blood test. DH didn't feel any different this time than last time, yet his neutrophils had decreased substantially... Nausea and fatigue are to be expected with radiation. And unfortunately, the only real way to know if the treatment is working is through imaging - I assume he's got a scan scheduled post-treatment? The wait is one of the worst part of this whole ordeal. Hang in there XXXXX

Claudine