rp1954 wrote:How is your Folfiri dosed with the DPD deficiency?
beach sunrise wrote:I thought DPD deficeint meant 5fu toxity is high. Maybe that is why you are having bad effects?
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.
Michmash77 wrote: ... Any thoughts would be appreciated! Thanks, Michelle.
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...
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.
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...
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!
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