5FU maintenance chemo even though NED - thoughts/opinions appreciated

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Michmash77
Posts: 13
Joined: Wed Feb 10, 2021 8:03 pm

5FU maintenance chemo even though NED - thoughts/opinions appreciated

Postby Michmash77 » Thu Oct 14, 2021 8:44 pm

Hi everyone, long-time lurker, first time poster. I’ve gotten so much good advice and helpful info from everyone here just from reading the posts but wanted to get some specific advice/opinions please.

My signature will hopefully cover the basics, but I was diagnosed last year with rectal cancer stage II. I’m in Australia so some of the treatment protocols here might be different. I went through the usual – radiation, surgery and chemo. Radiation didn’t work for me at all and my surgery therefore was quite extensive to remove the 9cm tumour, I had an ultra low anterior resection with supposedly a temporary ileostomy but that went on the backburner when they found four lung spots on my first post-treatment CT.

I have had some reservations and trust issues with my oncologist which i won't go into now but she is not my oncologist now!

After finding the lung spots we looked into ablation as an option, although I had to look for and find doctors for second opinions for this because my oncologist said, there was no point as “they’ll probably just come back”! We found a doctor who said it was possible and was willing to do it, but in Australia I’m in the public system, and although grateful for it, wait times and bureaucracy sometimes get in the way. I would have to wait too long to get the procedure without systemic therapy so we decided to go ahead with the chemo and leave ablation as an option down the track. They were now willing to try 5Fu and put me on Folfiri and Avastin.

I found this chemo much easier to take and was told I would need six months of it. They started me on a low dose of 5Fu (chemo pump for 48 hours) and gradually built me up to a 75% dose. By about halfway through I was getting more debilitating side-effects (HFS and lots of stoma bleeds!) but my three monthly scan showed it was working, two nodules gone and the other two significantly smaller. By the end of six months the scan showed all the lung nodules were gone and I was NED. Clear scans! We were very happy with this and the doctors seemed surprised it had worked so well.

Here’s my dilemma however – my new oncologist (who I hardly ever see, I’m often palmed off to registrars) wants to keep me on maintenance 5FU + Avastin “indefinitely”. My side-effects now are petty debilitating, the HFS particularly in my feet means I can barely walk, they are extra painful because of the neuropathy I think. I can’t work properly as I type for a living and trying to exercise is impossible. I don’t have a lot of issues with nausea now that the Irinotecan is finished but I am getting terrible stomach problems that last for days for about a week after my infusion. Terrible hunger pains that don’t go away. I’m also full of fluid and feeling generally rubbish. They were supposed to modify my 5FU dose from 75% to at least 50%, perhaps even less but haven’t. When I approached them about this on Tuesday for my last infusion, they decided against it. I would like to take a break but as I will be having a three month break for my ileostomy reversal surgery sometime down the track (no idea of a date) they want me to keep going until then.

So, sorry for the long story, but here’s my concerns that I would appreciate some feedback on –

1. As my scans show NED is it really necessary for me to stay on such a hard-hitting chemo regimen? I understand they feel the cancer is still there, just not visible, but I feel a bit inclined to go with the watch and wait approach. I’m getting scanned three monthly, surely we can keep an eye on it?
2. I’m worried about building up resistance at a time when I don’t even have any active tumours to kill .
3. I feel like my docs are being lazy. Just throw chemo at me until it stops working then let nature take its course.
4. They don’t listen to me when I tell them about my side-effects and especially as I have DPD deficiency, I am worried that the chemo is doing more harm than good at this point.
5. I feel it makes more sense to see if the lung spots come back and then ablate them or even surgically remove them if possible rather than just shrinking them constantly with chemo.

I also recognise the risk of staying off chemo and then tumours popping up in other places where it may be hard to treat. So I’m in a bit of a bind as to which direction to take. I would really appreciate any feedback from those in the know or who have had a similar situation. I see my oncologist next Wednesday and I a considering asking for a break after my next infusion at the end of the month.

Any thoughts would be appreciated! Thanks, Michelle.
Female, age 43 at Dx
25 Feb 2020 - Dx rectal cancer Stage II
DPD deficiency
March-May 2020 Radiation 28 cycles + Capecitabine
July 2020 -ULAR, temporary ileostomy
T3N0M0
KRAS Wild
Aug-Dec 2020 - Chemo Raltitrexed + Oxaliplatin
Jan 2021 - CT scan - four lung spots, inoperable, Stage IV
Feb 21 PET Scan - three small nodules, one 1cm nodule, uptake in 1cm nodule
April 21- Chemo - Folfiri + Avastin, 14 rounds
22 Sep 21 - CT scan. No lung nodules present. NED.
Next - maintenance chemo, Ileostomy reversal

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ginabeewell
Posts: 565
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Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

Postby ginabeewell » Thu Oct 14, 2021 11:15 pm

The last time I got to NED, my NW oncologist wanted me to do four more cycles; my MSK oncologist wanted eight. I got to seven before my levels dropped too low to continue, and I’ve been off for about two months and will scan next month.

I had to be pretty direct about not wanting to remain on treatment indefinitely. And I think the fact that my CEA is pretty reliable helped to convince them. Total cure just from chemo is rare, but it does happen.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

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https://weareallmadeofstars.net/favorite-posts

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

Postby rp1954 » Thu Oct 14, 2021 11:16 pm

How is your Folfiri dosed with the DPD deficiency?
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 chemo to almost nothing mid 2018, IV C-->2021. Now supplements

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beach sunrise
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Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

Postby beach sunrise » Thu Oct 14, 2021 11:23 pm

I thought DPD deficeint meant 5fu toxity is high. Maybe that is why you are having bad effects?
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

Michmash77
Posts: 13
Joined: Wed Feb 10, 2021 8:03 pm

Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

Postby Michmash77 » Fri Oct 15, 2021 1:32 am

rp1954 wrote:How is your Folfiri dosed with the DPD deficiency?


They started me at 50% which is apparently quite a high starting dose with DPD. When I tolerated that ok for two rounds they upped it to 75%. I've been on 75% since and they were supposed to drop it for maintenance chemo but for some reason haven't. so I've done 12 rounds at 75%.
Female, age 43 at Dx
25 Feb 2020 - Dx rectal cancer Stage II
DPD deficiency
March-May 2020 Radiation 28 cycles + Capecitabine
July 2020 -ULAR, temporary ileostomy
T3N0M0
KRAS Wild
Aug-Dec 2020 - Chemo Raltitrexed + Oxaliplatin
Jan 2021 - CT scan - four lung spots, inoperable, Stage IV
Feb 21 PET Scan - three small nodules, one 1cm nodule, uptake in 1cm nodule
April 21- Chemo - Folfiri + Avastin, 14 rounds
22 Sep 21 - CT scan. No lung nodules present. NED.
Next - maintenance chemo, Ileostomy reversal

Michmash77
Posts: 13
Joined: Wed Feb 10, 2021 8:03 pm

Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

Postby Michmash77 » Fri Oct 15, 2021 1:38 am

beach sunrise wrote:I thought DPD deficeint meant 5fu toxity is high. Maybe that is why you are having bad effects?


Yeah that's correct. The first chemo last year they avoided it and put me on a horrible drug Raltitrexed. I think this is not FDA approved in the US, and for good reason! It was horrific. I actually tolerated the 5FU much better. My oncologist didn't explain to me that there are two different types - one means you cannot have 5Fu under any circumstances and the other is uncertain. I also had a low level of the deficiency so they thought they would give it a try. Initially it was not too bad but the side-effects seem to be accumulating and I am concerned about staying on something my body doesn't breakdown very well and letting the toxicity build.
Female, age 43 at Dx
25 Feb 2020 - Dx rectal cancer Stage II
DPD deficiency
March-May 2020 Radiation 28 cycles + Capecitabine
July 2020 -ULAR, temporary ileostomy
T3N0M0
KRAS Wild
Aug-Dec 2020 - Chemo Raltitrexed + Oxaliplatin
Jan 2021 - CT scan - four lung spots, inoperable, Stage IV
Feb 21 PET Scan - three small nodules, one 1cm nodule, uptake in 1cm nodule
April 21- Chemo - Folfiri + Avastin, 14 rounds
22 Sep 21 - CT scan. No lung nodules present. NED.
Next - maintenance chemo, Ileostomy reversal

Michmash77
Posts: 13
Joined: Wed Feb 10, 2021 8:03 pm

Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

Postby Michmash77 » Fri Oct 15, 2021 1:51 am

ginabeewell wrote:The last time I got to NED, my NW oncologist wanted me to do four more cycles; my MSK oncologist wanted eight. I got to seven before my levels dropped too low to continue, and I’ve been off for about two months and will scan next month.

I had to be pretty direct about not wanting to remain on treatment indefinitely. And I think the fact that my CEA is pretty reliable helped to convince them. Total cure just from chemo is rare, but it does happen.


Thank you, that's really helpful to hear your experience. Unfortunately for me CEA has never been a reliable marker. It's always been low.

I know there are many out there who have had huge amounts of chemo and it keeps the cancer at bay for them and I will do it if here's no other options but i just feel like getting to NED is probably the best time to have a break if you are going to. I know I'll probably have to get back onto it at some stage in the future. If I stop at the end of the month i will have had three extra rounds of 5Fu + Avastin and be due for a scan six weeks after.
Female, age 43 at Dx
25 Feb 2020 - Dx rectal cancer Stage II
DPD deficiency
March-May 2020 Radiation 28 cycles + Capecitabine
July 2020 -ULAR, temporary ileostomy
T3N0M0
KRAS Wild
Aug-Dec 2020 - Chemo Raltitrexed + Oxaliplatin
Jan 2021 - CT scan - four lung spots, inoperable, Stage IV
Feb 21 PET Scan - three small nodules, one 1cm nodule, uptake in 1cm nodule
April 21- Chemo - Folfiri + Avastin, 14 rounds
22 Sep 21 - CT scan. No lung nodules present. NED.
Next - maintenance chemo, Ileostomy reversal

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O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

Postby O Stoma Mia » Fri Oct 15, 2021 10:58 am

Michmash77 wrote: ... Any thoughts would be appreciated! Thanks, Michelle.

Hello Michelle -

Welcome to the forum, and I'm sorry to hear that you are having such a hard time.

I have a few thoughts about your situation, but since I have not had any direct experience with Stage IV matters, my comments below are based only on my intuition and whatever second-hand or third-hand information I have at hand, and my thoughts come under your category "Any thoughts would be appreciated."

Thank you for taking the time to create a signature for your first post. That's very important. However, your signature doesn't have some of the most critical pieces of information needed. For example you don't mention much at all about the pathology report from your surgery. Since you had a cancer that apparently went from Stage IIa to Stage IVb in less than a year, the doesn't make any sense unless you had a very aggressive sort of cancer and a very high grade tumor. None of this was mentioned in your signature. You can get an idea of the standard items expected in a signature by reading this post:

How to create a signature
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=421597#p421597

In particular, we need to know (1) the type of cancer, (2) the grade of the tumor (3) the presence/absence of Lymphovascular Invasion (LVI),(4) the presence/absence of Perineural Invasion (PNI), (5) the number of local lymph nodes sampled in the resection, and (6) the number of these lymph nodes that were found positive, (7) the surgical margins, positive or negative, and (8) the baseline value for the CEA tumor marker that was taken before the onset of any treatment. All of these items should have been covered in a written pathology report or the lab reports given to you. If this is not the case then this does not bode well for the type of clinic or hospital where you had your diagnosis/staging done.

In addition, we need more information about when and how they determined that you have a DPD deficiency condition. This disorder is a family-related, genetic disorder present from birth. Have you known about this all along, or did they just discover it during or after your treatment regimens? When did they first discover that you had DPD deficiency., i.e., what proof do they have that you in fact have DPD deficiency, and what kind of test did they run and what were the results? What doesn't make any sense is that you had 28 sessions of chemo/radiation using capecitabine as the chemo component. Capecitabine is a 5FU pro-drug and is absolutely contraindicated for anyone with a DPD deficiency diagnosis. Why did they let you go on for the full 28 capecitabine-assisted chemo/rad sessions? In my opinion, they should have stopped it early and converted to some other type of neo-adjuvant regimen.

What is even more puzzling is the fact that you say they are now proposing to have you go on a "maintenance 5FU + Avastin” regimen (is this FOLFIRI + Avastin??) even after they have determined that you are DPD deficient. This is unbelievable! There are other regimens that do not involve 5FU, like this one involving only Irinotecan and Avastin, and which presumably would be acceptable for DPD deficient patients since it doesn't involve any form of 5FU. I do not know much about the Raltitrexed regimen they gave you, since that drug is not approved for use in the US. Like both 5FU (fluorourocil) and capecitabine, Raltitrexed is a regimen in the anti-metabolite category and it makes use of the folate cycle in metabolism, but apparently it is nevertheless acceptable for DPD deficient patients based on the results of this article.
https://www.sciencedirect.com/science/article/abs/pii/S1533002820301353

Finally, you need to post more messages on this thread. You are now only a Newly Registered User, under probation where all of your posts are required to undergo review by moderators before appearing on the main board. You need to have posted from 5 to 10 good, valid, non-spamlike, non-trivial, non-frivolous messages to the main board before they will promote you to the status of Registered User, where your messages will appear immediately on the board after you press the Submit button and confirm the submission on the subsequent screen. Right now you have only 4 posts to your credit, but that is not enough to pass probation. Also, you are disadvantaged in being in the Asia Pacific region, since this is a good number of time zones away from where the moderators are located, so if you have to wait until they come on line to approve your new posts, you may have to wait 12 to 24 hours depending on the time of day and whether it is a week-end, etc. So it is in your own best interest to start accumulating more posts to the main board so that you can eventually be promoted to higher status, sooner rather than later.

Looking forward to your future replies...

=====
Added later:

Another point concerns the lung "nodules" that they apparently found on the scans. Not all lung nodules are cancerous. Some are just benign granulomas. You might just have some granulomas, not lung metastases, especially if you were in the part of Australia near the recent brush fires with all of the smoke, soot and inhaled air pollution. Also, if you had a bad chest cold during the winter season this could have produced temporary benign lung nodules if your scans were done around the time when you had a bad chest cold. They cannot tell if a nodule is malignant or not unless they do a biopsy or remove the nodule via VATS surgery and send the nodule to the pathologist for examination. It doesn't do much good to just remove the nodules by ablation because there is then no way to test whether or not what you ablated was a malignant spot or just a benign granuloma.

Lung nodules and other lung "thingies"
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65477&p=508458&hilit=granuloma%2A#p508458
Last edited by O Stoma Mia on Sat Oct 16, 2021 12:38 am, edited 1 time in total.

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

Postby claudine » Fri Oct 15, 2021 4:20 pm

I think different oncologists have different approaches. My husband's is very much of the "let's only do chemo when we know what we're attacking" kind of school; even though my husband isn't NED (stable lytic L4 met), he's been off chemo for close to two years now. Also - pay really close attention to those side effects, especially neuropathy (which can become permanent); if your oncologist insists on maintenance chemo, maybe ask for a break first? My husband also had lung nodules (multiple small ones) when he started Folfiri + Avastin, but they haven't come back (it's been two years). As you can imagine, he's been really enjoying chemo-free life!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

Michmash77
Posts: 13
Joined: Wed Feb 10, 2021 8:03 pm

Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

Postby Michmash77 » Fri Oct 15, 2021 10:52 pm

O Stoma Mia wrote:
Michmash77 wrote: ... Any thoughts would be appreciated! Thanks, Michelle.

Hello Michelle -

Welcome to the forum, and I'm sorry to hear that you are having such a hard time.

I have a few thoughts about your situation, but since I have not had any direct experience with Stage IV matters, my comments below are based only on my intuition and whatever second-hand or third-hand information I have at hand, and my thoughts come under your category "Any thoughts would be appreciated."

Thank you for taking the time to create a signature for your first post. That's very important. However, your signature doesn't have some of the most critical pieces of information needed. For example you don't mention much at all about the pathology report from your surgery. Since you had a cancer that apparently went from Stage IIa to Stage IVb in less than a year, the doesn't make any sense unless you had a very aggressive sort of cancer and a very high grade tumor. None of this was mentioned in your signature. You can get an idea of the standard items expected in a signature by reading this post:

How to create a signature
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=421597#p421597

In particular, we need to know (1) the type of cancer, (2) the grade of the tumor (3) the presence/absence of Lymphovascular Invasion (LVI),(4) the presence/absence of Perineural Invasion (PNI), (5) the number of local lymph nodes sampled in the resection, and (6) the number of these lymph nodes that were found positive, (7) the surgical margins, positive or negative, and (8) the baseline value for the CEA tumor marker that was taken before the onset of any treatment. All of these items should have been covered in a written pathology report or the lab reports given to you. If this is not the case then this does not bode well for the type of clinic or hospital where you had your diagnosis/staging done.

In addition, we need more information about when and how they determined that you have a DPD deficiency condition. This disorder is a family-related, genetic disorder present from birth. Have you known about this all along, or did they just discover it during or after your treatment regimens? When did they first discover that you had DPD deficiency., i.e., what proof do they have that you in fact have DPD deficiency, and what kind of test did they run and what were the results? What doesn't make any sense is that you had 28 sessions of chemo/radiation using capecitabine as the chemo component. Capecitabine is a 5FU pro-drug and is absolutely contraindicated for anyone with a DPD deficiency diagnosis. Why did they let you go on for the full 28 capecitabine-assisted chemo/rad sessions? In my opinion, they should have stopped it early and converted to some other type of neo-adjuvant regimen.

What is even more puzzling is the fact that you say they are now proposing to have you go on a "maintenance 5FU + Avastin” regimen (is this FOLFIRI + Avastin??) even after they have determined that you are DPD deficient. This is unbelievable! There are other regimens that do not involve 5FU, like this one involving only Irinotecan and Avastin, and which presumably would be acceptable for DPD deficient patients since it doesn't involve any form of 5FU. I do not know much about the Raltitrexed regimen they gave you, since that drug is not approved for use in the US. Like both 5FU (fluorourocil) and capecitabine, Raltitrexed is a regimen in the anti-metabolite category and it makes use of the folate cycle in metabolism, but apparently it is nevertheless acceptable for DPD deficient patients based on the results of this article.
https://www.sciencedirect.com/science/article/abs/pii/S1533002820301353

Finally, you need to post more messages on this thread. You are now only a Newly Registered User, under probation where all of your posts are required to undergo review by moderators before appearing on the main board. You need to have posted from 5 to 10 good, valid, non-spamlike, non-trivial, non-frivolous messages to the main board before they will promote you to the status of Registered User, where your messages will appear immediately on the board after you press the Submit button and confirm the submission on the subsequent screen. Right now you have only 4 posts to your credit, but that is not enough to pass probation. Also, you are disadvantaged in being in the Asia Pacific region, since this is a good number of time zones away from where the moderators are located, so if you have to wait until they come on line to approve your new posts, you may have to wait 12 to 24 hours depending on the time of day and whether it is a week-end, etc. So it is in your own best interest to start accumulating more posts to the main board so that you can eventually be promoted to higher status, sooner rather than later.

Looking forward to your future replies...


Thanks so much for all your info and thoughts, I do really appreciate it! I'll work on my signature and add all the info you mentioned, I do have my pathology report from the surgery so all the details should be there. I too thought it was crazy to go from stage 2 to 4 in less than a year but I do know there was vascular invasion into a large blood vessel. No lymph node involvement. My oncologist also didn't scan me between my initial staging scans and post-treatment scans (nearly a whole year!). This is one reason why I'm questioning everything they do now, because we actually have no idea when the nodules turned up, pre-chemo, post-chemo, during? No one knows!

Regarding the DPD, i was offered a test before any treatment started, at our own cost. We decided to do it just to be on the safe side. When we got the results I was just told i had the deficiency and that it affected how my body metabolised 5FU. That was about all the info they gave me and I found researching it didn't shed much light on it. They gave me a half dose with the Capecitabine during radiation and I didn't have any particular bad reaction to it. However, for some reason they decided against trying it for my post-surgery chemo and gave me Raltitrexed instead. Which was terrible and I completely freaked out when they told me they wanted to put me back on the chemo when they found the lung nodules. But then they said they wanted to try Folfiri and I was baffled as well by the flip-flopping with regards to 5FU. Was it bad for me or not? My oncologist explained it this way and from what I have read, seems accurate - there are different variants of DPD deficiency. There is at least one variant which you would not even attempt 5FU as it could be fatal. Other variants will probably not be fatal if you have a low level. However, they basically aren't sure how it will affect you so they recommend starting at a low dose and gradually increasing. The test i did showed that i had one of the other variants at a low level, so they thought they would give it a go. I think I've tolerated it pretty well considering but I am also concerned that out of all the regimens they chose for maintenance therapy, they chose the one that my body doesn't really agree with. And it's why I'm pretty against continuing on it indefinitely. I get the impression that my current oncologist (who has only been an onc since January!) hasn't come across a DPD deficient patient before and is just Googling, same as me! :lol:

And I agree, the time difference is a pain! I'm yet to find a good forum based in Australia with as much helpful info as this one though. Anyway, thanks again for your insight and I'll work on that signature!
Female, age 43 at Dx
25 Feb 2020 - Dx rectal cancer Stage II
DPD deficiency
March-May 2020 Radiation 28 cycles + Capecitabine
July 2020 -ULAR, temporary ileostomy
T3N0M0
KRAS Wild
Aug-Dec 2020 - Chemo Raltitrexed + Oxaliplatin
Jan 2021 - CT scan - four lung spots, inoperable, Stage IV
Feb 21 PET Scan - three small nodules, one 1cm nodule, uptake in 1cm nodule
April 21- Chemo - Folfiri + Avastin, 14 rounds
22 Sep 21 - CT scan. No lung nodules present. NED.
Next - maintenance chemo, Ileostomy reversal

User avatar
beach sunrise
Posts: 1033
Joined: Thu Mar 05, 2020 7:14 pm

Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

Postby beach sunrise » Sat Oct 16, 2021 12:57 am

Also, don't know if you are taking any supplements or not but some supplements synergize 5FU such as melatonin so some research suggest.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

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O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

Postby O Stoma Mia » Sat Oct 16, 2021 6:01 am

Michmash77 wrote:If I stop at the end of the month i will have had three extra rounds of 5Fu + Avastin and be due for a scan six weeks after.

The question now is: what kind of scanner will be used to do the six-week scan, and will it be done with or without contrast. There are differences in scanners. Not all scanners have the same degree of sensitivity or high definition. If your hospital has only an 8-slice or 16-slice scanner, then it will probably miss any nodules less than 1 cm in diameter. It's better if the scans can be done at a major cancer center where they have a 128-slice scanner that can detect nodules as small as 1 mm -- i.e., 8 times more sensitive than a 16-slice scanner. See post below by member Sevilla2023.
.
Sevilla2023 wrote:...
And yes, in April and July mom had 128-slice CT with contrast which was analyzed very thoroughly but our oncologist and nothing was found. That CT is expected to show even very little things like 1 mm...

You can read up on 128-slice scanners here. The web page below mentions the range of scanners typically available for full-body scans. The more sensitive ones are probably far too expensive for clinics and small hospitals, so in that case they make do with the bottom-of-the-line scanners instead.

https://www.oncologysystems.com/inventory/medical-equipment-for-sale/used-ct-scanners/toshiba-aquilion-cxl-128-slice-ct-scanner

So, the next time you go in for a scan you should take a pencil and paper with you and write down the details of the scanner: (1) Manufacturer, (2) Model, (3) Number of slices, and (4) Year of manufacture (YOM). This will give you an idea of how sensitive your scan was.

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O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

Postby O Stoma Mia » Sun Oct 17, 2021 1:07 pm

Some additional thoughts ...

1. Have you ever had a PET/CT scan? If so, what were the uptake values (SUV) for the lung nodules?

2. You have had several CT scans. What kind of scans were they? with contrast or without? full body (neck to pelvis) or not?

3. How many slices does your hospital scanner have? (see my earlier post on CT scanner slices: https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65943&p=510735&hilit=slice+scanner#p510735

4. Have you been vaccinated for Covid-19? If so, which vaccine, and what was the date of vaccination vis-à-vis the onset of the lung nodules? (It might be relevant for DPD patients who may have unusual reactions to certain vaccines.)

5. Have you been affected by the smoke and air pollution from the Australian brush fires? This might explain the sudden eruption of lung nodules. See the footnote of my earlier post and the links where granuloma nodules and other lung "thingies" are discussed
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65943&p=510725&hilit=granuloma%2A#p510725

6. What kinds of preventive measures did you take for HFS hand foot syndrome? It is better to do prevention rather than post-injury treatment because these kinds of chemo-related disorders are much more difficult to control if they have already started and taken root. See earlier post on hand foot syndrome.
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=60725&p=480859&hilit=hand+foot+syndrome*#p480859

Hooandtrue93
Posts: 18
Joined: Tue May 11, 2021 10:28 pm

Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

Postby Hooandtrue93 » Sun Oct 17, 2021 5:11 pm

is using ctdna to track an option?
28 year old, son of 62 year old mom
Stage 3B Duodenal Adenocarcinoma.
7/13 lymph nodes positive
02/22/2021: Whipple Surgery
04/08/2021: Port Surgery. CtDNA test sample taken (positive)
04/13/2021: Folfox-6 begins for 6 months
07/16/2021: ctDNA cleared. Continue with 3 more months of adjuvant chemo
09/21/2021: Last cycle of adjuvant chemotherapy.

Michmash77
Posts: 13
Joined: Wed Feb 10, 2021 8:03 pm

Re: 5FU maintenance chemo even though NED - thoughts/opinions appreciated

Postby Michmash77 » Sun Oct 17, 2021 6:22 pm

Claudine wrote:I think different oncologists have different approaches. My husband's is very much of the "let's only do chemo when we know what we're attacking" kind of school; even though my husband isn't NED (stable lytic L4 met), he's been off chemo for close to two years now. Also - pay really close attention to those side effects, especially neuropathy (which can become permanent); if your oncologist insists on maintenance chemo, maybe ask for a break first? My husband also had lung nodules (multiple small ones) when he started Folfiri + Avastin, but they haven't come back (it's been two years). As you can imagine, he's been really enjoying chemo-free life!


Thanks Claudine for replying, i feel like my gut tells me that your husband's oncologist's approach is wise. Imagine if he had been on chemo the past two years! I don't want to take unnecessary risks but i also don't want to be taking something that may not be necessary right now. I think taking a break is a good idea and I''ll discuss it with my onc this week. Thanks!
Female, age 43 at Dx
25 Feb 2020 - Dx rectal cancer Stage II
DPD deficiency
March-May 2020 Radiation 28 cycles + Capecitabine
July 2020 -ULAR, temporary ileostomy
T3N0M0
KRAS Wild
Aug-Dec 2020 - Chemo Raltitrexed + Oxaliplatin
Jan 2021 - CT scan - four lung spots, inoperable, Stage IV
Feb 21 PET Scan - three small nodules, one 1cm nodule, uptake in 1cm nodule
April 21- Chemo - Folfiri + Avastin, 14 rounds
22 Sep 21 - CT scan. No lung nodules present. NED.
Next - maintenance chemo, Ileostomy reversal


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