Please allow me to introduce myself

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MetastaticEquilibria
Posts: 40
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Please allow me to introduce myself

Postby MetastaticEquilibria » Wed Jul 10, 2019 8:42 am

...I’m a man of neither wealth nor taste. (Oh well.)

Nevertheless, hi everybody. I have been reading this board ever since I got on this roller-coaster from which I cannot seem to get off, and it has been a great source of information and inspiration. After two and a half years, I figured I should say hi, and maybe try to share some of my story in case it is of any help to someone else, even if only as a negative example.

I’ll write up the whole story thus far soon. The bare bones are in my signature, or at least as much as would fit within 512 characters.

In the meantime, greetings!
M55 Stage 4 (Japan)
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad (x/gamma 60 Gy)
1-7/18 FOLFOX+Vectibix
8-9/18 Liver rad (protons 73 GyE)
10/18-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver rad (protons 66 GyE)
4/19 3 lung mets
4-6/19 Vectibix
7/19-now FOLFIRI+Cyramza
8/19 Lung mets stable
CEA 1.4-223 now 12.6
CA19-9 2.8-105 now 65
RAS wild MSS MET+func TP53-func
UGT1A1*28 homo

Claudine
Posts: 84
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Please allow me to introduce myself

Postby Claudine » Wed Jul 10, 2019 1:29 pm

Welcome, ME. It looks like you've already been through a lot... DH is on Folfiri after failed Xelox, so far so good, maybe that would also be good for you?
XXX
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 (activity on PET scan, no cancer found - Krohn's disease)
Xelox * 6, 05/2018 to 10/2018
6.7 cm hypermetabolic left adrenal mass 03/14/2019, 4.4 cm 05/21/2019
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
Scan 05/21: Multiple small lung nodules shrinking or stable compared to 03/14 scan.

fumaros
Posts: 264
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: Please allow me to introduce myself

Postby fumaros » Wed Jul 10, 2019 3:25 pm

Welcome, all stories are important and useful. All the best.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

MetastaticEquilibria
Posts: 40
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Please allow me to introduce myself

Postby MetastaticEquilibria » Thu Jul 11, 2019 4:56 am

Thanks for the welcome, Claudine and fumaros. Yes Claudine, let’s hope for continued or new FOLFIRI results, for your husband and me.

The story thus far:

December 2016: following unexpected weight loss, I went to the GP (at the insistence of my wife - I didn't believe anything was really wrong) who found blood in a stool sample. He also measured CEA and CA19-9, both of which were in the low normal range, but referred me to a local hospital for a colonoscopy, which revealed a tumor at the rectal/sigmoid junction. A CT scan showed no evidence of metastasis, and resection was performed in January 2017.

The pathology report came back showing clean margins and no lymph node involvement, but some evidence of lymphovascular invasion (LVI). So Stage 2 at this point, for which follow-up chemo was deemed optional, but recommended by the surgeon due to the LVI. I was put on UFT+UZEL (I live in Japan, and this is a commonly-used 5FU prodrug here -- rp1954 is familiar with it), "just in case." However, in July 2017 suddenly my CEA shot up and a CT scan showed recurrence at the original site, plus 2 large tumors in the liver, one near the bile duct and one near the portal vein.

At that point I got referred to a major cancer center in Tokyo, where I was immediately hospitalized for incipient jaundice due to bile duct blockage. A hepatic drain was installed. I was released 3 weeks later, and started on FOLFOX+Vectibix. This worked great at first, and hopes were high for curative surgery, but eventually it was determined by MRI that my pelvic area was inoperable due to how the cancer had spread there. To say this news sucked would obviously be an understatement.

The best they could offer was pelvic radiation, standard x-ray/gamma-ray radiation, which was unlikely to get all of the pelvic-region cancer, but might buy some time. So that was started, after another hospitalization due to my body having a bad reaction to the hepatic drain being removed (no longer needed due to liver tumor shrinkage).

During pelvic radiation, Vectibix had to be dropped, so I was just on FOLFOX. Then that had to be stopped too, due to platelets and neutrophils dropping too much. By the end of pelvic radiation (about 2 months), the liver tumors had come back to their original sizes, so I was started back on Vectibix and FOLFOX. Also, a few days after the radiation finished, I had severe abdominal pain and uncontrollable diarrhea, so back into the hospital for another month living on IV and painkillers.

Over the spring of 2018, the liver tumors seemed to be held in check by the FOLFOX+Vectibix, though the oxaliplatin had to keep getting reduced or omitted due to low platelets. The pelvic radiation, remarkably, seems to have done its job. So far no recurrence there.

However, eventually the liver tumors started going out of control again, and after looking around at proton therapy options, we found a hospital that was willing to shoot my liver. This was done just in the nick of time -- a week later and I probably would not be here today. But in the event, the two big tumors were, apparently, successfully fried, and things were looking good for a while. CEA came down to within normal range (CA19-9 had never left normal range), and nothing showed on the CT scans except for the necrotic liver tumors. I was put on Xeloda +
Avastin for maintenance, though soon had to stop due to falling platelets.

Then CEA rose and a 3rd liver tumor was found, in an area that had not been previously irradiated. So back for another round of protons on that spot.

But CEA didn't stop rising, and CA19-9 started rising as well, which it never had before. It was then found that 3 tiny tumors had taken up residence in my lungs. My platelets were still low, so I was put on Vectibix monotherapy. Which brought CEA and CA19-9 down some, and shrank the lung tumors a bit. Plus my platelets started coming back up, which might put some more chemo options back on the table.

Then yesterday, boom, CEA up from 7 to 13, and CA19-9 up from 13 to 105 (!). Plus liver numbers starting to look worse: ALP, AST, ALT, LDH, gamma-GTP, you name it -- everything except bilirubin, which actually went down. Those numbers were already bad, perhaps partly due to the liver radiation(?) but had been slowly getting better. Doctor ordered a new CT scan to find out what the heck is going on, which will take place tomorrow. But it is obviously not something good.

Depending on what is found, it is likely I will be switched to a new chemo. The next likely candidate is FOLFIRI, though as I am homozygous for UGT1A1*28, I'll have to take it at a reduced dosage to reduce the risk of having my neutrophils get clobbered.

Anyway, looks like it may be time to gird up for the next medical adventure. Nothing to do but grin and bear it, but boy do I sometimes wish I could get off this ride. Probably goes double for my wife, without whom I probably wouldn't be here already.
Last edited by MetastaticEquilibria on Mon Aug 19, 2019 1:16 pm, edited 2 times in total.
M55 Stage 4 (Japan)
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad (x/gamma 60 Gy)
1-7/18 FOLFOX+Vectibix
8-9/18 Liver rad (protons 73 GyE)
10/18-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver rad (protons 66 GyE)
4/19 3 lung mets
4-6/19 Vectibix
7/19-now FOLFIRI+Cyramza
8/19 Lung mets stable
CEA 1.4-223 now 12.6
CA19-9 2.8-105 now 65
RAS wild MSS MET+func TP53-func
UGT1A1*28 homo

Claudine
Posts: 84
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Please allow me to introduce myself

Postby Claudine » Thu Jul 11, 2019 9:47 am

Wow ME... I'm sorry to read all this, what a roller coaster ride. Your positive attitude is amazing! I hope your scan reveals what's currently going on - it's always better to know, so a treatment plan can be formulated. Despite all the research, we still know so little about cancer. Why it can be cured for some people, yet keeps coming back in others?? DH and I are still pretty new to all this (diagnosis was just a little over a year ago) and it is so different from any other condition. Fortunately medicine keeps making progress, so at least there are alternative treatments should one (or more) fail.
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 (activity on PET scan, no cancer found - Krohn's disease)
Xelox * 6, 05/2018 to 10/2018
6.7 cm hypermetabolic left adrenal mass 03/14/2019, 4.4 cm 05/21/2019
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
Scan 05/21: Multiple small lung nodules shrinking or stable compared to 03/14 scan.

rp1954
Posts: 1520
Joined: Mon Jun 13, 2011 1:13 am

Re: Please allow me to introduce myself

Postby rp1954 » Thu Jul 11, 2019 11:55 pm

MetastaticEquilibria wrote:I didn't believe anything was really wrong) who found blood in a stool sample. He also measured CEA and CA19-9, both of which were in the low normal range,

I'd say the two of the most important values you could mention here or in your signature are the CEA, CA199, with inflammation marker(s) at dx and post op, along with more dated way points. No CSLEX1 test was ever mentioned?

So Stage 2 at this point, for which follow-up chemo was deemed optional, but recommended by the surgeon due to the LVI.

So that was a 2a, 2b or 2c or given as a TNM?

I was put on UFT+UZEL (I live in Japan, and this is a commonly-used 5FU prodrug here -- rp1954 is familiar with it), "just in case."

I assume 4 weeks "on, 1 week "off" (we used continuous + more adjuncts); any dosages for UFT and LV to show? No mention of PSK or vitamin D by the doctors ?

However, eventually the liver tumors started going out of control again, and after looking around at proton therapy options, we found a hospital that was willing to shoot my liver. This was done just in the nick of time -- a week later and I probably would not be here today. But in the event, the two big tumors were, apparently, successfully fried, and things were looking good for a while. CEA came down to within normal range (CA19-9 had never left normal range), and nothing showed on the CT scans except for the necrotic liver tumors.

The diagnostic cutoff point for CA199 is developed for pancreatic cancer diagnosis. Roughly speaking for already dx'd CRC patients, there are about 4 ranges of interest at dx and post op: 0 - 2, less than about 12, less than about 22, ca 22 to ca 34, more than 34. The most CA199 utility assumes low or stable CRP, ESR, TSH, HgbA1C, liver panels, no interfering benign disease values.

I was put on Xeloda + Avastin for maintenance, though soon had to stop due to falling platelets

Still no mention of PSK? We used PSK, liver products, bone broth for platelets with UFT+LV+ASA+CXB (celecoxib). We held FIsh Liver Oil for alkyl glycerols in reserve, perhaps more potent than bone broth, never had to try it, her platelets stabilized with balanced chemistries and chemo.

Then CEA rose and a 3rd liver tumor was found, in an area that had not been previously irradiated. So back for another round of protons on that spot.

I'm wondering how much this might be associated with inflammations. Any hints on hsCRP, ESR, ferritin for occasional inflammation panels?

But CEA didn't stop rising, and CA19-9 started rising as well, which it never had before. It was then found that 3 tiny tumors had taken up residence in my lungs. My platelets were still low, so I was put on Vectibix monotherapy. Which brought CEA and CA19-9 down some, and shrank the lung tumors a bit. Plus my platelets started coming back up, which might put some more chemo options back on the table.

Then yesterday, boom, CEA up from 7 to 13, and CA19-9 up from 13 to 105 (!). Plus liver numbers starting to look worse: ALP, AST, ALT, LDH, gamma-GTP, you name it -- everything except bilirubin, which actually went down.

The two remaining common liver panels are AFP ("HCC marker") and PT/INR. The Chinese seem to be putting more effort in measuring AFP for CRC patients, and AFP caught a slow runaway for us, that wasn't too bad to tamp down. Any whole sets of blood data (e.g. CBC+liver/chem+markers), say at dx, post-op and now might be useful.

But it is obviously not something good...Depending on what is found, it is likely I will be switched to a new chemo. The next likely candidate is FOLFIRI, though as I am homozygous for UGT1A1*28, I'll have to take it at a reduced dosage to reduce the risk of having my neutrophils get clobbered.

Dr. Edward Lin had some really impressive early results with 5FU+CXB for recurrent/stage 4 patients. I hesitate to mention our answers, but rather than compete with FOLFIRI with 5FU+CXB alone, we found it necessary to add more stuff to make 5FU+CXB work. My view is that we have to be prepared to find and add treatments (surgery, chemistry, RT) until the cancer is visibly stopped in the scans and the bloodwork.
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

boxhill
Posts: 336
Joined: Fri Apr 06, 2018 11:40 am

Re: Please allow me to introduce myself

Postby boxhill » Fri Jul 12, 2019 10:10 am

ME, nice to meet you. And thanks for the ear worm, albeit a good one. :twisted:

Sorry you've been through all this. If only the damned beast would give up and go away!
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

MetastaticEquilibria
Posts: 40
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Please allow me to introduce myself

Postby MetastaticEquilibria » Fri Jul 12, 2019 10:02 pm

Thanks Claudine, rp1954 and boxhill.

Claudine, not sure that I would say my attitude is all that great. I have been through all the shock, dismay, several cycles of dashed hopes, and have ended up somewhere that I would not describe as at peace, but perhaps realistic and resigned to some extent. To continue the musical theme that I started in the thread title, David Bowie's Scary Monsters album starts out with the song "It's no Game (part 1)," (oh what an apt title for the subject of this forum), which is jangly and screechy and just sounds like agony all through. The album ends with "It's no Game (part 2)," which is rather mellow and relaxed in sound, though the lyrics are not any more positive. As though he has realized things are not going to get any better, and there is nothing to do but somehow live with them that way. My mood is something like that.

Most times, at least. Yesterday driving to the hospital for what I knew was going to be bad news of some kind, I found myself just full of anger. "Not this crap again." As the philosopher Johnny Lydon tells us, "anger is an energy," and I was powering a small suburb.

(boxhill, I hope you aren't bothered by some more ear worms there.)

rp1954, I will reply to you in more detail in a separate post. I have tons of data and plots and scan images, with circles and arrows and paragraphs on the back of each one to be used, well, mostly for my own amusement. (Sorry for another ear worm.) I love analyzing data, so quite actually enjoy getting blood test results and scan data to play with and analyze on my own. Even if I cannot change the ultimate outcome, I feel compelled to at least try to understand as much as possible the nature of the locomotive that is bearing down on me.

Oh, and the nature of the bad news that was revealed yesterday: Some growth of lung tumors, plus at least one new lung tumor. Plus maybe something happening in the liver, though not entirely clear what. Anyway, it has been decided to switch from Vectibix to FOLFIRI+Cyramza from next week. Fingers crossed.
M55 Stage 4 (Japan)
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad (x/gamma 60 Gy)
1-7/18 FOLFOX+Vectibix
8-9/18 Liver rad (protons 73 GyE)
10/18-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver rad (protons 66 GyE)
4/19 3 lung mets
4-6/19 Vectibix
7/19-now FOLFIRI+Cyramza
8/19 Lung mets stable
CEA 1.4-223 now 12.6
CA19-9 2.8-105 now 65
RAS wild MSS MET+func TP53-func
UGT1A1*28 homo

MetastaticEquilibria
Posts: 40
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Please allow me to introduce myself

Postby MetastaticEquilibria » Sat Jul 13, 2019 8:16 am

Hi rp1954,

rp1954 wrote:
MetastaticEquilibria wrote:He also measured CEA and CA19-9, both of which were in the low normal range,

I'd say the two of the most important values you could mention here or in your signature are the CEA, CA199, with inflammation marker(s) at dx and post op, along with more dated way points. No CSLEX1 test was ever mentioned?


No room in sig, so will summarize here. For inflammation marker, I’ll list CRP:
CEA 1.4, CA19-9 5.8, CRP unknown at initial diagnosis
CEA 2.9, CA19-9 19, CRP 0.01 3 months post-op
Then as liver mets grow and shrink repeatedly CEA goes up and down (max 223, min 2.4) as does CRP (max 35, min 0.3), while CA19-9 stays in mid-teens. The pattern changes once lung mets appear, with CEA and CA19-9 going up and down with lung mets (CA19-9 at larger amplitude than CEA), and CRP rising to 2.5 now.

In general, it has seemed to me that pelvic tumors don’t affect tumor markers much, liver mets affect CEA but not CA19-9, and lung mets mostly affect CA19-9 and to a lesser extent CEA. Why these things should be, if they are really true, I don’t know.

So Stage 2 at this point, for which follow-up chemo was deemed optional, but recommended by the surgeon due to the LVI.

So that was a 2a, 2b or 2c or given as a TNM?


T3N0M0

I was put on UFT+UZEL (I live in Japan, and this is a commonly-used 5FU prodrug here -- rp1954 is familiar with it), "just in case."

I assume 4 weeks "on, 1 week "off" (we used continuous + more adjuncts); any dosages for UFT and LV to show? No mention of PSK or vitamin D by the doctors ?


Yes, 4 weeks on, 1 week off per cycle
300 mg UFT, 75 mg UZEL per day. (Which is about half the standard full dose for my BSA.)

No mention of PSK or Vit D. Oncologists here don’t generally go for supplements or even dietary advice. The doctors who do push supplements etc. tend, unfortunately, to be on the quackish side. I have heard of various supplements on this forum, from other patient blogs, and from various friends and relatives, of course. I’ve even been known to try a few, but usually cut back after a while when I become uncertain or concerned about what other effects they may be having.

The diagnostic cutoff point for CA199 is developed for pancreatic cancer diagnosis. Roughly speaking for already dx'd CRC patients, there are about 4 ranges of interest at dx and post op: 0 - 2, less than about 12, less than about 22, ca 22 to ca 34, more than 34. The most CA199 utility assumes low or stable CRP, ESR, TSH, HgbA1C, liver panels, no interfering benign disease values.


Post-op, my CA19-9 was pretty much always in the teens (your third range) until the lung mets showed up, no matter what happened with the liver mets.

I was put on Xeloda + Avastin for maintenance, though soon had to stop due to falling platelets

Still no mention of PSK? We used PSK, liver products, bone broth for platelets with UFT+LV+ASA+CXB (celecoxib). We held FIsh Liver Oil for alkyl glycerols in reserve, perhaps more potent than bone broth, never had to try it, her platelets stabilized with balanced chemistries and chemo.


I have tried so many things to raise platelets, without obvious success. Papaya extract (there are some papers on that), D, B-12, chinese medicine. I do eat a lot of liver paste (I like it anyway), which has helped my anemia I think, but not sure it has done much beyond that. Heck, there was even a paper which suggested anemia encourages platelet production, so maybe it has been counterproductive!

Bone soup is an interesting idea. Perhaps an excuse to eat more tonkotsu ramen? (Made with pig marrow broth, tasty.)

Hadn’t heard of fish liver oil for platelets.

The blood experts at the cancer center looked into my case, and concluded I have suppressed bone marrow primarily from the pelvic radiation. (Which was necessary, so I cannot complain.)

Of course, I was also on oxaliplatin for most of a year, which is known to cause thrombocytopenia, possibly due to splenomegaly caused by back-pressure from the liver caused by damage from the oxali. And in fact I have gone back through CT data and measured the volume of my spleen over time, and it clearly started increasing in size at the same time I started oxaliplatin. There was also an extra “bump” in size after the proton radiation in the liver. It eventually about doubled in volume over time, though has recently started shrinking again, and is now only about one-and-a-half times as big as it originally was. And my platelets have finally started edging up again. Still low, but at least above the cut-off for getting more types of chemo again.

Then CEA rose and a 3rd liver tumor was found, in an area that had not been previously irradiated. So back for another round of protons on that spot.

I'm wondering how much this might be associated with inflammations. Any hints on hsCRP, ESR, ferritin for occasional inflammation panels?


CRP is going up right now. Don’t have hsCRP, ESR or ferritin numbers. As for where inflammation might be occurring, don’t know but can think of many candidates: the lung tumors, whatever is happening in my liver to cause the recent bad liver numbers, my Vectibix rash (quite severe this time), maybe even delayed lung inflammation due to being in the path of the recent proton irradiation? Who knows. (Though that gives me some ideas of stuff to read up on and think about — thanks.)

The two remaining common liver panels are AFP ("HCC marker") and PT/INR. The Chinese seem to be putting more effort in measuring AFP for CRC patients, and AFP caught a slow runaway for us, that wasn't too bad to tamp down. Any whole sets of blood data (e.g. CBC+liver/chem+markers), say at dx, post-op and now might be useful.


I have kept all the blood data ever taken on me, though don’t think I have ever heard of AFP or PT/INR.


Dr. Edward Lin had some really impressive early results with 5FU+CXB for recurrent/stage 4 patients. I hesitate to mention our answers, but rather than compete with FOLFIRI with 5FU+CXB alone, we found it necessary to add more stuff to make 5FU+CXB work. My view is that we have to be prepared to find and add treatments (surgery, chemistry, RT) until the cancer is visibly stopped in the scans and the bloodwork.


I actually wrote to one of the ADAPT study authors last year (not Lin), who said they were no longer recommending the ADAPT protocol. This was after their second study got cut short, so I surmise their follow-up results weren’t as encouraging? Don’t actually know the story, but stopped looking into it after that.

Thanks, you have given me some ideas for digging into the data a bit deeper. More fun with data analysis!
M55 Stage 4 (Japan)
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad (x/gamma 60 Gy)
1-7/18 FOLFOX+Vectibix
8-9/18 Liver rad (protons 73 GyE)
10/18-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver rad (protons 66 GyE)
4/19 3 lung mets
4-6/19 Vectibix
7/19-now FOLFIRI+Cyramza
8/19 Lung mets stable
CEA 1.4-223 now 12.6
CA19-9 2.8-105 now 65
RAS wild MSS MET+func TP53-func
UGT1A1*28 homo

Jolene
Posts: 131
Joined: Wed Jan 23, 2019 10:17 am

Re: Please allow me to introduce myself

Postby Jolene » Fri Aug 02, 2019 10:16 pm

Hi ME - thanks for sharing your story with us ! What a roller coaster ride indeed and to still stay so strong. Your story is so detailed and eloquently written. I'm sure many viewers including myself are learning new things from it ! I just want to share a few things with you based on my own experience albeit I am no where as crazy as your situation at the moment.

Re: Low platelets

Have you heard of filgrastim booster shots ? It's a kind of medication used to boost platelets for patients undergoing various treatment especially for chemotherapy to keep the platelets up. I was prescribed with Nivestim(brand) right from the start of my chemo which I have to self-inject at home a few days after every chemo infusion. The idea is to stimulate the bone marrow to produce white blood cells(?) and hence keeping the platelet count up for when the next chemo infusion is due. I often felt backache or muscle ache after the shots, I guess that's the bone marrow being stimulated ! I have had 6 cycles of Xelox continuously without any stop as my blood platelet was kept right up throughout the cycles and I do think it has something to do with the booster jabs.

It seems like not many cancer patients (including family members) that I know of have been prescribed with it before and even when I did a search on the boards here, very little was mentioned about Filgrastim. It seems like the standard care is to delay the infusion, lower the dosage or get off it altogether. Onc did mentioned that these shots can become a cost concern in certain institutions which lead me to suspect that it may be more cost effective to apply the standard care of delaying the infusion than to prescribe booster jabs ? Just my suspicion as I wondered why not more are being prescribed to patients undergoing chemo when low platelets count is a problem for many !

You may want to check it out and raise it with your onc when you get the chance next ?

Re: Vitamin D

Vit D may not be as quakish ? In fact, a thread has recently been started on this board with one of the poster posting research from Yale on the effectiveness of Vitamin D for colorectal patient. You will also read that a number of us have been prescribed with high dose Vit D by our oncologist. Hope these helps !

viewtopic.php?f=1&t=62916
Dx @ 39 F, married
Nov 18 - Scope + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox. Wait and watch protocol in place !

Rock_Robster
Posts: 282
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Please allow me to introduce myself

Postby Rock_Robster » Fri Aug 02, 2019 11:31 pm

Jolene wrote:

Re: Vitamin D

Vit D may not be as quakish ? In fact, a thread has recently been started on this board with one of the poster posting research from Yale on the effectiveness of Vitamin D for colorectal patient

Also the very recent SUNSHINE trial at Dana-Farber, starting at 8,000 IU/day then sustaining 4,000 IU/day:

https://www.dana-farber.org/newsroom/ne ... al-cancer/

Also to your point about Neulasta/Filgrastim/etc., when I asked my onc about it (when my neutrophils were diving), he said it wasn’t really SOC here, that its benefit was not reliable and it has unpleasant side effects. He preferred just to delay a week. I also found this odd given some places (esp. in US) seem to routinely offer it.
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
pT3pN1apM1a; 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
08/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 2
10/19 - Planned liver resection #2 & ileo reversal

Jolene
Posts: 131
Joined: Wed Jan 23, 2019 10:17 am

Re: Please allow me to introduce myself

Postby Jolene » Sat Aug 03, 2019 3:23 am

Rock_Robster wrote:Also the very recent SUNSHINE trial at Dana-Farber, starting at 8,000 IU/day then sustaining 4,000 IU/day:

https://www.dana-farber.org/newsroom/ne ... al-cancer/

Also to your point about Neulasta/Filgrastim/etc., when I asked my onc about it (when my neutrophils were diving), he said it wasn’t really SOC here, that its benefit was not reliable and it has unpleasant side effects. He preferred just to delay a week. I also found this odd given some places (esp. in US) seem to routinely offer it.


Thanks for sharing another Vitamin D research ! Time to up my dosage. I was prescribed to take 2000 IU per day and that is just to get myself up to the acceptable range.

As I guessed it, Filgrastim isn't on every SOC. Where did you receive your treatment from ?

I am fortunate enough to be on a rather privileged insurance plan which allows me to be cared for under private clinics. I am guessing this means they have more independence to exercise prescription however they see fit for the patients. They were also able to experiment with less mainstream treatment plans that are controversial - for eg. I'm on wait and watch protocol at the moment.

Most of the cancer patients that I know of under public healthcare have not heard about Filgrastim and were never provided an option on it, if cost is a concern I can see why it was not prescribed in the first place. I'm not in the US. My onc did mentioned that not everyone reacts well to Filgrastim but the fact that it kept my blood platelet count up even though always hovering around the danger level could mean I'm one of the few lucky ones. Onc was not overly concerned over any unpleasant side effects. I always had backache after the shots but that's apparently because the bone marrow is being stimulated.

I just think that these jabs could be offered as a self-paid option to everyone if cost is a consideration in some institutions. If payment is an issue, the patient can then choose to wait it out.
Dx @ 39 F, married
Nov 18 - Scope + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox. Wait and watch protocol in place !

Rock_Robster
Posts: 282
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Please allow me to introduce myself

Postby Rock_Robster » Sat Aug 03, 2019 3:52 am

No worries Jolene.

I’m in Australia so the system is a little different - we have public health (free healthcare funded through federal taxes), and private health (usually funded through the patient’s optional insurance, or self-funded by the patient). I do my chemo through the private health system so cost shouldn’t be a barrier - the insurance companies generally cover whatever the oncologist reasonably prescribes (or the patient can pay out-of-pocket). Of course medically-speaking the oncologists still have to follow treatment protocols and use govt-approved drugs, etc. This is what I believe he was referring to by local SOC. Given the above I don’t think cost is such a barrier in this case, rather my oncologist truly believed that the chance of a benefit from Neulasta wasn’t worth the side effects, compared to just delaying treatment by a week.
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
pT3pN1apM1a; 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
08/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 2
10/19 - Planned liver resection #2 & ileo reversal

MetastaticEquilibria
Posts: 40
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Please allow me to introduce myself

Postby MetastaticEquilibria » Sat Aug 03, 2019 6:42 am

Thanks for the replies and suggestions, Jolene and Rock_Robster!

I have asked my oncologist about Filgrastim/Neulasta in the past (I know someone in the US who had received it with every chemo infusion), and his reply was similar to that of RR’s onc, that it is not a good long-term solution, and their standard treatment is to delay chemo and wait for natural recovery instead.

As it happens, the first round of Irinotecan clobbered my neutrophils pretty severely, to just above the cutoff for receiving chemo. My genetics (UGT1A1*28 homozygous) predicted that, so my dose needs to be drastically lowered compared to that of most people. It started out low to begin with, and was lowered further for the second round, but I have a feeling I will end up having to sit out the next round. On the bright side, my CA19-9 and inflammation and liver panel numbers have dropped some, so I want to keep pursuing this as long as possible.

As for Vit D3, that is one supplement that I have continued to take more regularly than not. Nice to see the new results from Dana Farber. Thanks.
M55 Stage 4 (Japan)
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad (x/gamma 60 Gy)
1-7/18 FOLFOX+Vectibix
8-9/18 Liver rad (protons 73 GyE)
10/18-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver rad (protons 66 GyE)
4/19 3 lung mets
4-6/19 Vectibix
7/19-now FOLFIRI+Cyramza
8/19 Lung mets stable
CEA 1.4-223 now 12.6
CA19-9 2.8-105 now 65
RAS wild MSS MET+func TP53-func
UGT1A1*28 homo

boxhill
Posts: 336
Joined: Fri Apr 06, 2018 11:40 am

Re: Please allow me to introduce myself

Postby boxhill » Sun Aug 04, 2019 2:24 pm

I just want to clarify that the drug under discussion, which goes by various brand names, stimulates WHITE blood cell production (hence neutrophils), not platelets. Jolene, platelets are red blood cells.

I started on Neulasta after I think 4 cycles, after having to wait a couple of weeks for first my platelets and then my neutrophils to recover. Alas, my bone marrow continued to be, as they say "tender," so although Neulasta worked like a charm, my platelets continued to sag. There is no drug for platelets, and I personally have never heard that there are any supplements that are actually proven to help.

A Neulasta shot is typically given when your pump is detached. Neupogen is cheaper, but you have to self-administer over several days. Regular Claritin prevents the bone pain associated with Neulasta. It really works, as I can testify, having foolishly skipped it the first time.

BTW, although it doesn't help platelets, my NP told me to eat a rare steak during the second week of the cycle to help counteract my anemia. Worked like a charm. :)
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


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