A thought on chemo side effects

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Rock_Robster
Posts: 342
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

A thought on chemo side effects

Postby Rock_Robster » Sun Jun 16, 2019 10:31 pm

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.
Last edited by Rock_Robster on Mon Jun 17, 2019 2:57 am, edited 1 time in total.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

Pyro70
Posts: 144
Joined: Mon Jan 21, 2019 4:25 pm

Re: A thought on chemo side effects

Postby Pyro70 » Mon Jun 17, 2019 12:17 am

Can you post relevant studies?
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

lovelife789
Posts: 141
Joined: Thu Aug 24, 2017 5:28 am

Re: A thought on chemo side effects

Postby lovelife789 » Mon Jun 17, 2019 1:08 am

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.... :shock: :shock:
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Mod. differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - 6/30 - NED
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
8/30 - VATs
8/30 - 4/30 - NED
5/28 - uptake seen in 1 x PALN, 1x common iliac, cloudy in Liver
FOLFIRI + Avastin

Rock_Robster
Posts: 342
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: A thought on chemo side effects

Postby Rock_Robster » Mon Jun 17, 2019 1:40 am

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.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

rp1954
Posts: 1521
Joined: Mon Jun 13, 2011 1:13 am

Re: A thought on chemo side effects

Postby rp1954 » Mon Jun 17, 2019 3:21 am

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.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

Claudine
Posts: 131
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: A thought on chemo side effects

Postby Claudine » Mon Jul 08, 2019 3:10 pm

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?!?
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, 17, 10, 6.4, 5, 4.8, 4.2, 3.6, 3.2, 3.3, 3.2, 3.7, 4.3, 4.2, 4.2, 5.0
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

Rock_Robster
Posts: 342
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: A thought on chemo side effects

Postby Rock_Robster » Mon Jul 08, 2019 7:17 pm

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.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

boxhill
Posts: 355
Joined: Fri Apr 06, 2018 11:40 am

Re: A thought on chemo side effects

Postby boxhill » Mon Jul 08, 2019 7:18 pm

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.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

lovelife789
Posts: 141
Joined: Thu Aug 24, 2017 5:28 am

Re: A thought on chemo side effects

Postby lovelife789 » Tue Jul 09, 2019 5:12 am

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...
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Mod. differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - 6/30 - NED
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
8/30 - VATs
8/30 - 4/30 - NED
5/28 - uptake seen in 1 x PALN, 1x common iliac, cloudy in Liver
FOLFIRI + Avastin

User avatar
SilverWedding
Posts: 66
Joined: Sat May 18, 2019 5:54 am
Facebook Username: Cynthia Harding Marshall

Re: A thought on chemo side effects

Postby SilverWedding » Wed Jul 10, 2019 11:45 pm

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?
5/19 - DH - 50s, RC 5+cm at dentate line extending to rectal vau
6/19 - Neoadjuvant Xeloda with radiation 6 weeks
9/19 - Restorative Proctectomy, J-Pouch Coloanal Anastomosis, Loop Ileostomy with Appendectomy
10/19 - ypT3N2aM0
10/19 - Adenocarcinoma, moderately differentiated. Deep ulcerated 2.0 cm. Stage 3B with 6/22 lymph nodes positive
Next up: 4 months chemo suggested

Claudine
Posts: 131
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: A thought on chemo side effects

Postby Claudine » Thu Jul 11, 2019 9:36 am

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
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, 17, 10, 6.4, 5, 4.8, 4.2, 3.6, 3.2, 3.3, 3.2, 3.7, 4.3, 4.2, 4.2, 5.0
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)


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