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

Please feel free to read, share your thoughts, your stories and connect with others!
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 7:04 pm

beach sunrise wrote:Also, don't know if you are taking any supplements or not but some supplements synergize 5FU such as melatonin so some research suggest.


Thanks, I did do some research on melatonin, very interesting! Fortunately I was already taking melatonin for my sleep issues which I'm glad of now! The only other supplement i take is turkey tail.
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 » Sun Oct 17, 2021 7:33 pm

O Stoma Mia wrote: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


Ok, so to answer your questions -

1. Yes, i had a PET scan about a month after they found the nodules on the CT. The conclusion for it was - "the largest pulmonary nodule seen on the recent CT is FDG avid (SUV 3.6) concerning for metastatic disease. The other smaller pulmonary nodules...did not demonstrate any associated FDG avidity but this may be due to their small size". So they did discuss with me the possibility that it could be other things, but they decided it was unlikely as there were no signs of anything on my initial staging scan in Feb 20. The PET scan was done Feb 21. they didn't want to biopsy because of the risks and they said surgery was a no-go because there were too many. I have thought it possible that maybe it wasn't cancer at all and wouldn't that be lovely, but put it down to wishful thinking. However, having a break from chemo might also give us a chance to see if anything else pops up anywhere, in the lungs or elsewhere.

2. All my CT scans have been chest/abdo/pelvis with contrast. I've only had one MRI at the staging scans.

3. I'm not sure about the slices of the hospital scanner but that was very good advice to go with the 128 slice scan if possible. I'm at a major cancer centre in Sydney and all my scans are done at the hospital but there are loads of radiology practices outside the hospital that I could go to so I will see what I can find for my next one.

4. Vaccinated yes with Pfizer. it was done in May/June so about six months after the nodules were found. I had a mild reaction to the second shot, a short-lived fever and a bit tired for a few days.

5. We weren't in Australia when the bush fires happened. We actually lived in Thailand, came back in Feb 20 to see my mum for a week and get my colonoscopy as my insurance in Thailand wouldn't cover it. Nearly two years later, still here and had to give up our home in Thailand. :( In Thailand we didn't live in Bangkok and were in a quieter part of Phuket so I don't think pollution would be an issue either.

6. At first my doctors didn't think i had HFS, they just thought it was my neuropathy. But it was a very different kind of feeling than just the neuropathy, a burning pain and felt like i was walking on glass. It wasn't until I started getting a lot of redness did they acknowledge it might be HFS. So up until that point I was doing everything wrong. It was winter here so lots of hot showers, big woolly socks, going for long walks to keep my exercise up, vigorously rubbing my feet! Ha ha. But when it was decided it was HFS I basically stay off my feet as much as I can over the week it is bad. I use heavy emollients (gently rubbed in now!) and ice packs just from the fridge, so not frozen but just to cool things down. It's bearable if I don't stand on them for too long.

Thanks so much for all your thoughts, you are a wealth of information! It's given me a lot to consider and talk to my onc about on Wednesday.
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 » Sun Oct 17, 2021 7:57 pm

Hooandtrue93 wrote:is using ctdna to track an option?


I didn't know too much about this so I did some reading and I guess it could be a possibility. It seems like it's still pretty new in Australia, so I will ask my onc about it on Wednesday. Thanks for the suggestion!
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

Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

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

Postby Rock_Robster » Sun Oct 17, 2021 10:02 pm

Michmash77 wrote:
Hooandtrue93 wrote:is using ctdna to track an option?


I didn't know too much about this so I did some reading and I guess it could be a possibility. It seems like it's still pretty new in Australia, so I will ask my onc about it on Wednesday. Thanks for the suggestion!

Peter Mac do it but it’s very expensive; you do have the option of using the US providers (eg Signatera). The challenge you’ll likely face is finding an oncologist willing to explain and use the results of the testing, given the lack of translational research in stage IV patients and inclusion in Oz treatment protocols.
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

User avatar
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 11:32 pm

Michelle -

Welcome to the club as a "Registered User" with the ability now to post messages immediately to the main board !

Here's another example of a benign lung nodule that was originally thought to be a met:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=62481&p=492559&hilit=granuloma+benign+nodule*#p492559

User avatar
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 » Mon Oct 18, 2021 1:55 am

Image
    T3: "The tumor has grown through the muscularis propria and into the subserosa, which is a thin layer of connective tissue beneath the outer layer of some parts of the large intestine, or it has grown into tissues surrounding the colon or rectum."
======
If you look at the diagram above, you can see how a T3 tumor could leak some cancer cells into the local vascular network. Within the colon/rectum wall itself there are many tiny blood vessels that could possibly be invaded by cancer cells. Then when the blood flows back to the heart via the venous vascular network it just needs to get onto one of the vascular "off-ramps" from the colon wall and into one of the main blood vessels back to the heart, and from there the blood can circulate through the whole body in just a matter of minutes.

I think there is some research suggesting that the route that the blood takes in going from the rectum back to the heart depends on which part of the rectum the tumor is located in. Tumors located in the lower third of the rectum are thought to normally send blood back to the heart via a vascular network that goes directly to the thoracic region where the lungs are located, while tumors located in the upper part of the rectum are said to use a different vascular "off ramp" from the rectum that goes back to the heart via large veins passing through the upper abdominal area where the pancreas and liver are located. This is said to possibly explain why some rectal cancer patients end up with lung mets but not liver mets, while other rectal cancer patients may end up with liver mets but no lung mets. Whether this is true or not I can't really say. It might just be a hypothesis of a few researchers working in the area.

It should be noted that this line of reasoning applies only to vascular invasion. Lymphatic invasion is a rather different matter, because there are no lymph nodes within the colon/rectum wall itself, and within the lymphatic network there is no pump analogous to the vascular network's heart, so the propagation of cancer by the lymphatic network is much, much slower than by the vascular network. Also, note that in the English language, one of the definitions of "lymphatic" is "sluggish".

So, it could conceivably be the case that a rectal cancer patient might have lung mets, but no liver mets and no mets in the local/regional lymph nodes either. It's all a big mystery, as far as I can tell.

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 » Mon Oct 18, 2021 10:30 am

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!


Yes, his QoL has been sooo much better! What I like about this is that they stopped Folfiri/Avastin before he developed resistance to the treatment, so it's an option to get back on should he need to resume chemo (although his onc would like to try Lonsurf instead, because he's never been on it and the side effects are supposedly milder than F+A). Also, he's been able to "forget" about cancer (as much as one can...) whereas regular chemo would be a constant reminder; and he's built his immune system back up. Whether or not it's the best approach, though, is impossible to know, this isn't a scientific experiment with a duplicate DH as control; we just decided to trust the oncologist on this XXX
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

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 » Mon Oct 18, 2021 11:40 am

It's all a big mystery, as far as I can tell.


I really wondered about the pattern of spread for my husband. I found interesting articles citing Batson's plexus as a possible way for spread to the spine, but since he eventually developed lung mets (who knows, maybe they were already there but so tiny they weren't visible at first, whereas his L4 met was huge) maybe cancer cells did enter "circulation from the filtering capabilities of the pulmonary capillaries" (https://www.sciencedirect.com/science/a ... 5020321963). Of course since they never found a primary for him, it adds an extra layer of complexity...
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

User avatar
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 » Tue Oct 19, 2021 2:01 pm

Good luck with your meeting with the oncologist today. Let us know what you find out.

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

Batson's plexus

Postby O Stoma Mia » Tue Oct 19, 2021 2:26 pm

Claudine wrote:
It's all a big mystery, as far as I can tell.


I really wondered about the pattern of spread for my husband. I found interesting articles citing Batson's plexus as a possible way for spread to the spine, but since he eventually developed lung mets (who knows, maybe they were already there but so tiny they weren't visible at first, whereas his L4 met was huge) maybe cancer cells did enter "circulation from the filtering capabilities of the pulmonary capillaries" (https://www.sciencedirect.com/science/a ... 5020321963). Of course since they never found a primary for him, it adds an extra layer of complexity...

Claudine -

Thank's for the tip! I had not heard of Batson's plexus prior to seeing your post.

THE FUNCTION OF THE VERTEBRAL VEINS AND THEIR RÔLE IN THE SPREAD OF METASTASES
Oscar V. Batson (1940)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1387927/


Image

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Wed Oct 20, 2021 8:13 pm

Just as an add on here :
My reading of the 1940 paper seems they exclude the lymphatic ducts which, while allied, are distinct from the vascular venous plexuses.
Rectosigmoid Cancer mets "tend" to go to the lungs via lymphatics and Virchow's lymph node is a sentinal for this.

Vascular plexuses will eventually also be "mixed" with the lymphatic drainage via the thoracic duct which enters the formal cardiovascular system inside the thorax. If we check the drainage fields of both the lymphatic and paravertebral venous systems, I think we will see that either OR both are potentially responsible for a wide range of metatstatic distributions.

the quoted article, IMO serves as a very important foundation of our current state of knowledge... BUTT should not be considered de facto as an explanation of current metastatic treatise.
... :shock: JMO

Cheers and stay safe everyone
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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

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

Postby Michmash77 » Thu Oct 21, 2021 5:36 pm

O Stoma Mia wrote:Good luck with your meeting with the oncologist today. Let us know what you find out.

Thank you! It was not particularly fruitful, it was very frustrating actually. I didn't get to see my actual oncologist. I've seen him a total of twice in the past seven months of this lot of chemo. I had one of the registrars who I had never met and who it seemed didn't really bother to go through my history first. It's mostly frustrating because I rarely see the same doctor two consults in a row and every time I go through my side-effects (which have been steadily getting worse for seven months) it is the first time they are hearing of it. So it doesn't seem to be a problem to them. They are wanting me to go ahead with treatment next week without a dose reduction, which I'm not happy about. We complained to this doctor at the end of the consult that there are real gaps in the communication between my oncologist and myself, in a big part due to him never seeing me himself and she has arranged an appointment for me to see him in two weeks. I decided not to speak to this new random doctor about my many questions and concerns because she seemed inexperienced and I will wait to speak to my actual oncologist.

I've also got the ball rolling on getting a 2nd and 3rd opinion from oncologists who specialise in colorectal cancer and may consider switching if I feel my treatment will be more personalised than what it is now. Right now I just feel like another cookie cutter stage IV cancer patient whose treatment is being dictated by someone who is not that interested in me. At the moment, most consults have been over the phone and my last appointment face to face with my oncologist was about six months ago. I saw him in the cancer centre the other day and smiled and waved and he just stared blankly at me! I'm not confidant in placing my life in the hands of someone who doesn't even know what I look like! I think it creates a disconnect. So I'm looking at other options.
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
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Random Doctors

Postby O Stoma Mia » Fri Oct 22, 2021 2:51 am

Thank you for the update. I'm sorry to hear that you are having to deal with "random doctors". In such circumstances you really need to start on a "Plan B" -- which you are already doing.

The "Plan A" in your type health system is essentially a "one-size-fits-all" approach aimed at the average patient within a given diagnosis/stage category. This type of scheme doesn't provide for personalized options for those patients who are far from average. Patients who are outliers in this type of system tend to get over-treated or under-treated, and then the health system is forced to deal belatedly with the consequences.

Some members of this forum in similar situations have opted to go abroad, at their own expense, to obtain needed, personalized treatment. For example, mCRC patient Sophy made trips to Germany and UK for specialized treatments. She is now NED and is glad she decided to seek other options.

Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

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

Postby Rock_Robster » Fri Oct 22, 2021 9:58 am

Hi Michmash, I agree fully with the suggestion above - I understand from your earlier posts you’re based in Australia, so just let me know if you’d like any suggestions for second opinions.
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

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

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

Postby Michmash77 » Mon Oct 25, 2021 12:27 am

Rock_Robster wrote:Hi Michmash, I agree fully with the suggestion above - I understand from your earlier posts you’re based in Australia, so just let me know if you’d like any suggestions for second opinions.


Thanks so much! I am based in Australia, in Sydney. I've got the ball rolling on some second opinions already but if I need some more info I'll be in touch for sure. 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


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot] and 112 guests