Anemia while taking xeloda and avastin UPDATE PROGRESSION

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ktwmn
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Anemia while taking xeloda and avastin UPDATE PROGRESSION

Postby ktwmn » Sat Feb 24, 2018 1:50 pm

Has anyone experienced gradually becomic anemic while on xeloda and avastin? I’ve been on this combo for over a year, with a couple breaks from avastin, and my RBC, HGB, and HCT had been good until the past few months where they have started to tank. I understand that the side effects are cumulative with this (I’ve noticed that arthritis like pain as well as digestive issues are more frequent) but my concern is that the anemia is not side effects but one of my mets activating. Onc didn’t seem too concerned and put in for iron and B12 testing. Let me know if anyone has experienced similar! Thx!
Last edited by ktwmn on Fri Jun 01, 2018 11:31 am, edited 3 times in total.
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin

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betsydoglover
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Location: Maryland - outside DC

Re: Anemia while taking xeloda and avastin

Postby betsydoglover » Sat Feb 24, 2018 2:55 pm

You are doing right getting your onc to run tests. I've been on Xeloda twice and on Avastin for 2 years, but never had altered red blood counts. But that's just me, I'm sure your doc can get to the bottom of this - many chemos can reduce RBC counts in some people,

Take care,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

rp1954
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Re: Anemia while taking xeloda and avastin

Postby rp1954 » Sat Feb 24, 2018 8:20 pm

ktwmn wrote:Has anyone experienced gradually becomic anemic while on xeloda and avastin? I’ve been on this combo for over a year, with a couple breaks from avastin, and my RBC, HGB, and HCT had been good until the past few months where they have started to tank.

Any 5FU combo or additive could do it, whether due to deterioration of GI or combination of things. Extra folic acid's added 5FU toxicity appeared to do it for my wife - dr almost stopped chemo earlier on. Btw any fortified, processed carb binges lately? For RBC and HGB, besides ruthlessly eliminating folic acid sources, she added two things: two tablespoons of liver (spread) per day, and PSK for RBC. A problem is that a Japanese paper showed poor OS benefits between ultralow CEA and PSK, so maybe not PSK. If she wants to show off, she can drive her Hgb up to 15 on chemo and liver (and the other supplements).

I understand that the side effects are cumulative with this...

until you fix them

(I’ve noticed that arthritis like pain as well as digestive issues are more frequent) but my concern is that the anemia is not side effects but one of my mets activating.

We used IV vitamin C, glutamine, glucosamine and nacinamide with a little zinc carnosine and magnesium chelates for GI and mucosal repair for 5FU related damage. IV vitamin C, megavitamin K2, megavitamin D3 for arthritis, as well as the chondrotin-glucosamin-MSM-fish oil-GLA type formula. Funny thing, my wife was always anemia and arthritis prone decades before cancer. Now she's not - even on chemo.

Various test results suggest that her megavitamin MK4 (humanized K2), D3, IV vitamin C help her daily 5FU inhibit or dissolve her cancer features, presumably the CA199, KRAS mut or AFP related ones, as well as some medical papers and reports. Multitasked vitamins.

my concern is that ... one of my mets activating

Of course, your onc has been carefully tracking CA199, LDH, MCV, maybe AFP and some of the other off label markers and support panels (ESR, hsCRP, PT/INR, HgbA1C, thyroid) while on maintenance, right ???
watchful, active researcher and caregiver for stage IVb/c CC since early 2010. 8 yrs immuno-Chemo for mCRC, now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher

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ktwmn
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Re: Anemia while taking xeloda and avastin

Postby ktwmn » Sat Feb 24, 2018 9:17 pm

Thanks for these great replies!

One of the things I noticed on my report is a very high RDW (22). MCV is normal but has been higher than normal in past months. This seems to suggest macrocytic anemia.

When initially diagnosed, I was anemic but RDW and MCV were both in normal ranges.
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin

rp1954
Posts: 1393
Joined: Mon Jun 13, 2011 1:13 am

Re: Anemia while taking xeloda and avastin

Postby rp1954 » Sun Feb 25, 2018 12:01 pm

Sometimes secondary uses of blood panel can have much different ranges and meaning under specific conditions, especially as a series of measurements. We use MCV series as a measure of chemo activity, where I did a fair amount of digging for chemo-cancer-MCV papers, and it has been very useful. I haven't worked much with RDW, our local lab didn't report it the first 6 years.

Basically MCV goes up with chemo activity, and papers' stats reflect it as a differential measurement, delta MCV (current MCV - dx/prechemo baseline) where larger is better, and absolute values, values over 103 especially desired where the % survivors was largest. With extra dietary (natural) folates, MCV is more related to chemo activity on the cancer rather than folate deficiency. The initial buildup of MCV for for a successful treatment is typically slow, months, but fast in decline. When my wife is under dosed on critical items, MCV can fall like a rock but rebuild fairly quickly. Having multiple markers has been the better way,for both speed of detection, and sorting possibilities and nuances.
watchful, active researcher and caregiver for stage IVb/c CC since early 2010. 8 yrs immuno-Chemo for mCRC, now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher

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ktwmn
Posts: 350
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Re: Anemia while taking xeloda and avastin

Postby ktwmn » Sun Feb 25, 2018 7:05 pm

Interesting. Unfortunately my MCV fell along with the HGB RBC and HCT, the only thing that rose was the RDW. I noticed that during my week off I feel fatigued for about 5 days, which makes me think that is when my nadir hits (I do one week on, one week off). 2-3 good days and it’s time to start again.

I’ve been doing this routine for awhile, have basically been on chemo of some sort for the past 3 years with no real break (an extra week here and there but that’s it).
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin

rp1954
Posts: 1393
Joined: Mon Jun 13, 2011 1:13 am

Re: Anemia while taking xeloda and avastin

Postby rp1954 » Tue Feb 27, 2018 5:05 pm

Luvinlife was going to quit folfiri because of her side effects until she got IV vitamin C and supplements, she was able to radically improve her QOL despite 3 more years of folfiri.
watchful, active researcher and caregiver for stage IVb/c CC since early 2010. 8 yrs immuno-Chemo for mCRC, now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher

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ktwmn
Posts: 350
Joined: Tue Aug 02, 2011 9:41 am

Re: Anemia while taking xeloda and avastin UPDATE Elevated CA125

Postby ktwmn » Wed May 09, 2018 11:05 am

As I originally wrote, my Hgb and and HCT were gradually tanking between November and February, so onc did iron test in February. It took over two months to get the results, but last Friday I asked about it; it came back low (6) so basically I was told I am clearly iron deficient and onc orders IV iron and wants to schedule colonoscopy to find the bleeding tumor. Well, yesterday I go for IV iron and ask about my CBC bloodwork from last Friday: RBC, Hgb and HCT all have normal values. My question is (RP1954!): How could these blood values suddenly climb up after gradually going down for several months?

Just got a call from onc office. My CA-125 is elevated. So it's looking like the pelvic mets have activated (which may explain the constipation). So I'll find out more after a round of scans...Looks like I'm back to intense cancerland. (They recommended my getting gutted like a fish a while back but I refused it because it was not a curative option).
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin

rp1954
Posts: 1393
Joined: Mon Jun 13, 2011 1:13 am

Re: Anemia while taking xeloda and avastin UPDATE Elevated CA125

Postby rp1954 » Thu May 10, 2018 6:28 am

How? Could be a lab mistake for one test only, or when you do something good (e.g. 2+ TSB liver daily or whatever), plug/heal a loss of RBC, lots of improvement in a week or two is possible.

Without seeing the entire blood tests occasionally, there's too much info missing for a lot of questions.

About the CA125, that's pretty rare here. My primary comment is that we attack new marker elevations primarily by extending the old chemo with more chemistry (supplements and mild drugs) experimentally related to bashing the new marker's kind of cancer. e.g there is inhibitor literature for liver cancer which frequently expresses the marker, AFP with experimental or off label treatments with ordinary things. We could cover that marker by adding more of particular (mega)vitamins to the megavitamins and drug we already had for CRC that also have had use with liver cancer, until AFP drops like a rock.
watchful, active researcher and caregiver for stage IVb/c CC since early 2010. 8 yrs immuno-Chemo for mCRC, now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher

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ktwmn
Posts: 350
Joined: Tue Aug 02, 2011 9:41 am

Re: Anemia while taking xeloda and avastin UPDATE Elevated CA125

Postby ktwmn » Thu May 10, 2018 7:15 am

Thx for your insights, RP1954! CEA has never been measurable for me, so I convinced my onc to use CA-125. I actually had ovarian cancer in 1994. Because of the way my cancer behaves (pelvic mets near old ovarian cancer and endometriosis sites) I have often wondered if perhaps the ovarian cancer has come back after 24 years. My onc was not convinced. I told him that since CEA is not measurable we should try CA125, because when my GP took it prior to my recurrence the values were starting to rise. And some studies show that although it is pretty nonspecific CA-125 can be an indicator for activity in the pelvic area. So with my last blood work I asked onc to check it. Now I guess it will be done regularly. I’m pretty convinced that we’re dealing with peritoneal carcinomatosis.
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin

recruiter
Posts: 82
Joined: Thu Feb 11, 2016 12:01 pm
Facebook Username: Bill Wilson

Re: Anemia while taking xeloda and avastin UPDATE Elevated CA125

Postby recruiter » Thu May 10, 2018 11:08 am

Exactly what's going on with me right now. Hgb has dropped steadily since February, when we discovered my insurance pharmacy had been feeding me half the Xeloda dosage intended by my doctor - 1500 mg a day instead of 3000.

Since the dosage has been corrected, I've had some bleeding for a day or two after the Avastin infusion, and BMs that are as hard as rocks, which damage my record crop of piles.
DX Stage 4 2/16 with lung mets
4/16 CT, PET show "marked improvement" in size and number of lung mets, rectal tumor.
8/16 "Great report" from scans, lung mets continue to shrink in size and number, CEA 1.6, cancer "in remission" but surgeon believes tumor remains too large.
10/16 Xrays for constipation problems reveal tumor occupies 25 percent of rectal canal: Occupied 80 percent upon diagnosis 2/16
12/16 Back on Avastin; tumor can be removed, but need better margins.

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ktwmn
Posts: 350
Joined: Tue Aug 02, 2011 9:41 am

Re: Anemia while taking xeloda and avastin UPDATE Elevated CA125

Postby ktwmn » Thu May 10, 2018 12:43 pm

Recruiter: I sent you a PM.
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin

User avatar
ktwmn
Posts: 350
Joined: Tue Aug 02, 2011 9:41 am

Re: Anemia while taking xeloda and avastin UPDATE PROGRESSION

Postby ktwmn » Fri Jun 01, 2018 11:29 am

Well, I had a MRI last week and it looks like my peritoneal tumors have progressed and it is time to say farewell to the relative stability I enjoyed over the past 18 months or so. After getting infused iron I began to notice symptoms for the first time. The pelvic lesion is now infiltrating the pelvic floor and rectum and now measures 3.1 x 3.8 x 2.6 cm. It is causing impaired defecation and from what I can tell slow steady blood loss (hard to know where it ultimately is coming from because I have hemorrhoids and symptoms of a bleeding ulcer as well, but the stool has a dark brown/maroon color). The other sizable lesion below the umbilicus is 3 x 4.6 x 4 cm. There are a number of subcentimenter lesions in other areas of the peritoneum.

I am consulting with my surgeon and radiation oncologist at UNC, as well as a medical onc at Duke about clinical trials. I fear that I will be told some sort of exenteration is the only option. Any advice? Others who had a similar scenario? Many thanks!
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin


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