Please help, my Dad has no oncologist possible bile duct blockage?

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Kirsty5
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Please help, my Dad has no oncologist possible bile duct blockage?

Postby Kirsty5 » Thu Jul 30, 2020 1:13 am

Thank you so much in advance for any and all advice. My Dad (76) who has multiple myeloma (managed at the moment) and also has crc with mets to the liver and lung and peritoneum. In spring 2019 he had an ileostomy (only three lymph nodes involved) and a reversal in November 2019. After a scan in January, there were mets to both the liver, and two spots on the lung. (Peritoneum showed up on a later scan..) His oncologist gave him one weeks notice that he was retiring, and was replaced by a new oncologist who has removed care, saying his medication (Xeloda) wasn't working and that he doubts anything else would. He hadn't even finished the first 10 weeks of Xeloda, though he did seem to go downhill sharply on it, losing about 30 pounds (5 foot 10, from 160). The mets on the liver are large and went from 6- 10 cm in three months My Dad is not moving around much at all- just for the past two weeks, sleeping most of the time. I talked to our naturopathic oncologist and she thought my Dad might have some kind of infection and was concerned he may be headed toward sepsis (although his creatine levels are fine..) and though he should be hospitalized before any more treatment- so that they could do a blood panel etc. (We are on repurposed drugs though the NP onc and also doing IV VitC and regional hyperthermia) She said we should get an electrolyte panel, stat if we didn't go to the hospital. We did and I will share some of the highest numbers below, so that hopefully someone can advise or interpret. Looking at the symptoms of bile duct blockage, I am really worried this may be what is going on. His urine is very dark, he is complaining of stomach pain (though he says it gets a bit better when constipation is relieved..) No vomiting or fever, but weight loss and itching- and the weight loss. My questions besides the obvious one of what to do are: would it be worth finding a new oncologist? (We have had one highly recommended to us) and do you think the below numbers could mean a bile duct blockage? Any thoughts are most truly appreciated.

His white blood cells were trending down for the last 5 labs, but are up again since last week. His CEA has gone up to 620, from 540 a month and a half before (It was 310 in June)

His Lactate Dehydrogenase is sky high at 2500- his (former) oncologist doesn't even acknowledge that cachexia is treated... can this be normal?? We are giving him protein and fish oil and magnesium and MSM

WBC 18
RDW 21
RBC 2.88
Hemoglobin 92
Hematocrit 0.28

Sodium 141
Potassium 3.8
Creatinine 60
Estimated GFR 92


Alkaline Phosphatase 671
Gamma GT 37
Alanine Aminotransferase 11

stu
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Joined: Sat Aug 17, 2013 5:46 pm

Re: Please help, my Dad has no oncologist possible bile duct blockage?

Postby stu » Thu Jul 30, 2020 12:22 pm

Hi ,
Sorry your dad is having such a rough time . I am not sure if I am reading this correctly but has this decision been made in the absence of a scan . Is it made in the strength of his CEA rise . Did it initially descend .
All the side effects you have described my mum had on that particular treatment . Her stomach cramps were absolutely awful . Her CRA rose high than diagnosis. She was a symptomatic prior to diagnosis. If it was me I would want a scan to get a scan and work from the evidence . My mum lost three stones and several hospital admissions during treatment but still had a good response . She was so ill looking . She bounced back after treatment stopped . I think a second opinion would be very wise at this stage . Even if the situation is as the oncologist suspects at least you have explored all options however if it’s not as he / she suspects you want to know . Either way your dad may wish more information to help decide what options are open to him .
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Kirsty5
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Re: Please help, my Dad has no oncologist possible bile duct blockage?

Postby Kirsty5 » Thu Jul 30, 2020 7:03 pm

Hi Stu,

Thank you so much for your response- and thank you for sharing that about your mum- that is wonderful to hear..!

Do you mean that your mum rebounded when she was taken off the xeloda? Did she start a different drug after that? My dad was considered too weak for the folfox/folfiri- though he had a port put in. I think we will get a second opinion. It is so alarming it is that he is sleeping so much.

I'm wondering if anyone else can chime in about the lactic dehydrogenase? Has anyone seen one that high?

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beach sunrise
Posts: 162
Joined: Thu Mar 05, 2020 7:14 pm

Re: Please help, my Dad has no oncologist possible bile duct blockage?

Postby beach sunrise » Thu Jul 30, 2020 8:16 pm

Hi, I haven't heard of LDH that high. Do you know which ones are higher than the others in the 1-5 fractions?
Dx 8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1-21-20 APR ostomy - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
mFOLFOX6 CEA 7
8 rds 6-10 CEA 11.4 4 more no oxa
6-17 CEA 11.1 AFP 11.2 CA125 25.7 CA199 9
7-2 CEA 11.1 AFP 5.3 CA125 24.8 CA199 8
7-16 CEA 10.3 AFP 5.3 CA125 26.6 CA199 8
7-28 CEA 8.8 AFP 7.7 CA125 27 CA199 7
8-6 CEA 7.8 AFP 7 CA125 26.1 CA199 7
MHL1+
PMS2+
MSH2+
MSH6+
Chem-sens test NCI "Test failed, neo adj C/R worked. Not enough ca cells to test"

Kirsty5
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Joined: Tue Jan 15, 2019 2:36 am
Facebook Username: Kirsten

Re: Please help, my Dad has no oncologist possible bile duct blockage?

Postby Kirsty5 » Fri Jul 31, 2020 2:01 am

beach sunrise wrote:Hi, I haven't heard of LDH that high. Do you know which ones are higher than the others in the 1-5 fractions?


Thanks for the response, beach sunrise- I honestly don't know.. What does that mean "1-5 fractions" I have all his blood tests panels, so if you clarify I would love to provide the info... I googled it but no luck. Thank you so much for trying to help!!
'

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beach sunrise
Posts: 162
Joined: Thu Mar 05, 2020 7:14 pm

Re: Please help, my Dad has no oncologist possible bile duct blockage?

Postby beach sunrise » Fri Jul 31, 2020 3:02 am

check University of Rochester Medical Center. It is explained very well there.
Dx 8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1-21-20 APR ostomy - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
mFOLFOX6 CEA 7
8 rds 6-10 CEA 11.4 4 more no oxa
6-17 CEA 11.1 AFP 11.2 CA125 25.7 CA199 9
7-2 CEA 11.1 AFP 5.3 CA125 24.8 CA199 8
7-16 CEA 10.3 AFP 5.3 CA125 26.6 CA199 8
7-28 CEA 8.8 AFP 7.7 CA125 27 CA199 7
8-6 CEA 7.8 AFP 7 CA125 26.1 CA199 7
MHL1+
PMS2+
MSH2+
MSH6+
Chem-sens test NCI "Test failed, neo adj C/R worked. Not enough ca cells to test"

Kirsty5
Posts: 14
Joined: Tue Jan 15, 2019 2:36 am
Facebook Username: Kirsten

Re: Please help, my Dad has no oncologist possible bile duct blockage?

Postby Kirsty5 » Fri Jul 31, 2020 10:58 am

beach sunrise wrote:check University of Rochester Medical Center. It is explained very well there.


Looked on their website, did an internal search, came up with radiotherapy results and ejections fraction results but nothing helpful. Can you explain why this may be helpful for my dad? I really want to help him

Kirsty5
Posts: 14
Joined: Tue Jan 15, 2019 2:36 am
Facebook Username: Kirsten

Re: Please help, my Dad has no oncologist possible bile duct blockage?

Postby Kirsty5 » Fri Jul 31, 2020 11:03 am

beach sunrise wrote:Hi, I haven't heard of LDH that high. Do you know which ones are higher than the others in the 1-5 fractions?


Hi beach sunrise,

I found this on another medical site which describes what you are referring to, we only have the one generalized ldh number, via his labs/bloodwork- it has never been broken down this way for us. Should I try to get another blood test that breaks it down that way? In otherwords might it provide us with the information as to the source of this olympic ldh?

Thanks


Definition
The enzyme lactate dehydrogenase (also known as lactic dehydrogenase, or LDH) is found in the cells of almost all body tissues. The enzyme is especially concentrated in the heart, liver, red blood cells, kidneys, muscles, brain, and lungs. The total LDH can be further separated into five components or fractions labeled by number: LDH-1, LDH-2, LDH-3, LDH-4, and LDH-5. Each of these fractions, called isoenzymes, is used mainly by a different set of cells or tissues in the body. For this reason, the relative amounts of a particular isoenzyme of LDH in the blood can provide valuable diagnostic information.
Purpose

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beach sunrise
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Joined: Thu Mar 05, 2020 7:14 pm

Re: Please help, my Dad has no oncologist possible bile duct blockage?

Postby beach sunrise » Fri Jul 31, 2020 11:25 am

I think it has valuable info for what is going on at a deeper level combined with the other lab work done. I am a detail oriented person so I had the LDH 1-5 and it told me LDH 3 (lungs) was higher than the rest. I dumped everything in the house that was areosol, artificially scented, basicly I threw out everything not natural and my LDH 3 came down 2 points just by doing that. I upped walking every day also.
I have that panel checked once a month. Last checked it showed liver was abnormal (comparing LDH 4 to 5) but I do believe it was from FOLFOX or at least I hope so.
Dx 8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1-21-20 APR ostomy - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
mFOLFOX6 CEA 7
8 rds 6-10 CEA 11.4 4 more no oxa
6-17 CEA 11.1 AFP 11.2 CA125 25.7 CA199 9
7-2 CEA 11.1 AFP 5.3 CA125 24.8 CA199 8
7-16 CEA 10.3 AFP 5.3 CA125 26.6 CA199 8
7-28 CEA 8.8 AFP 7.7 CA125 27 CA199 7
8-6 CEA 7.8 AFP 7 CA125 26.1 CA199 7
MHL1+
PMS2+
MSH2+
MSH6+
Chem-sens test NCI "Test failed, neo adj C/R worked. Not enough ca cells to test"

boxhill
Posts: 570
Joined: Fri Apr 06, 2018 11:40 am

Re: Please help, my Dad has no oncologist possible bile duct blockage?

Postby boxhill » Fri Jul 31, 2020 12:00 pm

I'm sorry your father is in this situation. It sounds as if he might well feel abandoned in mid-stream.

Is you naturopathic oncologist an actual MD with oncology training, and affiliated with any hospital in your area? Can s/he order test and scans, and have your father admitted to the hospital if necessary? Whose idea was it to bring this person onto your father's team? I guess I don't really understand the role this person plays in your father's care.

I only dwell on it because it seems to me that your father is in need of a *relationship* with an oncologist who is willing to carefully review your father's scans and tests, order new ones if necessary, and sit down with him (and you, if that's your norm) and thoroughly go over your father's current health and what s/he sees as potential paths to follow.
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
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment


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