Colon, Liver, Lungs, Part 2

DanNH

Infusion 11 Postponed for a week

This was expected by us. Pam had some intestinal discomfort at pump disconnect and hand foot syndrome is bothersome. She actually put a sewing needle through her finger without knowing until she pulled the thread. She is getting a half liter of fluids and I will be working this week. We will return next Monday and see how it goes then. 

Tueffel

DanNH said:

Infusion 11 Postponed for a week

This was expected by us. Pam had some intestinal discomfort at pump disconnect and hand foot syndrome is bothersome. She actually put a sewing needle through her finger without knowing until she pulled the thread. She is getting a half liter of fluids and I will be working this week. We will return next Monday and see how it goes then. 

I wish your wife

I wish your wife a quick recovery, so the infusion can start again. It is difficult right? You kind of want the treatment because it kills the cancer but you still see your loved ones suffer due to the treatment...

I wish you all the best

DanNH

Infusion 11 is done

After an extra week to recover Pam got infusion 11.  Labs for the prior week postponed infusion looked great with CEA dropping again to 80.5. This time they drew the labs through the port. One of the labs was badly skewed with normally stable values suddenly off. The oncologist said he thought that the labs were wrong, not properly drawn and ordered new labs. These were drawn through a vein. Most of it was back to normal but what has me concerned is that CEA has plateaued at 80.7. 

I read other posts and see numbers in the single digits and teens and those are high. Pam's first CEA was 1298! I haven't seen anything close to that here. She told me that she feels something twinge in her liver and now this plateau. Creatinine is low 39 and BuN creatinine ratio is high 51. Now I am worried that maybe one of the liver Mets is not responding. This is all way preliminary. We have a scan ordered for this month and are waiting for it to be scheduled. That will tell the story. In the mean time I am reading up on what options are available to attack a targeted met. 

In the mean time she feels pretty awful with the usual side effects following Folfiri with Avastin and 5-.FU (how approximately named!). Of course I have to remember that without chemo.... it's just unthinkable. So infusion 12 is on the horizon with the fall being a giant blank page. Following the scan and any new news from the oncologist about what treatments are or are not in play it may be time to try metronomic chemo or find a surgeon or radiologist who can lighten the tumor load. I've been watching some of the other posts about met surgery and I want to be grounded in options for September. Another round of 6 ground and pound infusions is hard to fathom. 

Dan

Ruthmomto4

DanNH said:

Infusion 11 is done

After an extra week to recover Pam got infusion 11.  Labs for the prior week postponed infusion looked great with CEA dropping again to 80.5. This time they drew the labs through the port. One of the labs was badly skewed with normally stable values suddenly off. The oncologist said he thought that the labs were wrong, not properly drawn and ordered new labs. These were drawn through a vein. Most of it was back to normal but what has me concerned is that CEA has plateaued at 80.7. 

I read other posts and see numbers in the single digits and teens and those are high. Pam's first CEA was 1298! I haven't seen anything close to that here. She told me that she feels something twinge in her liver and now this plateau. Creatinine is low 39 and BuN creatinine ratio is high 51. Now I am worried that maybe one of the liver Mets is not responding. This is all way preliminary. We have a scan ordered for this month and are waiting for it to be scheduled. That will tell the story. In the mean time I am reading up on what options are available to attack a targeted met. 

In the mean time she feels pretty awful with the usual side effects following Folfiri with Avastin and 5-.FU (how approximately named!). Of course I have to remember that without chemo.... it's just unthinkable. So infusion 12 is on the horizon with the fall being a giant blank page. Following the scan and any new news from the oncologist about what treatments are or are not in play it may be time to try metronomic chemo or find a surgeon or radiologist who can lighten the tumor load. I've been watching some of the other posts about met surgery and I want to be grounded in options for September. Another round of 6 ground and pound infusions is hard to fathom. 

Dan

Has she had any surgery yet?

Have they removed the tumor in the colon at least? BUN and Creatinine measure kidney functions not the liver. I am sorry she struggling with the chemo, I hope things get easier soon

SnapDragon2

Now might be the right time

Now might be the right time for serious surgeon hunt if she has plateaued on current regime and not getting any further seeable response.

Explore metronomic but you will be hard pressed to find a medical onc to go along as they are bought by big pharma (bread and butter).

DanNH

Pam has had no surgery yet.

Pam has had no surgery yet. It is my dream that survery will remove some of the tumor load. I am searching for surgical oncologists and radiation oncologist to at least speak with. 

worriedson714

DanNH said:

Infusion 11 is done

After an extra week to recover Pam got infusion 11.  Labs for the prior week postponed infusion looked great with CEA dropping again to 80.5. This time they drew the labs through the port. One of the labs was badly skewed with normally stable values suddenly off. The oncologist said he thought that the labs were wrong, not properly drawn and ordered new labs. These were drawn through a vein. Most of it was back to normal but what has me concerned is that CEA has plateaued at 80.7. 

I read other posts and see numbers in the single digits and teens and those are high. Pam's first CEA was 1298! I haven't seen anything close to that here. She told me that she feels something twinge in her liver and now this plateau. Creatinine is low 39 and BuN creatinine ratio is high 51. Now I am worried that maybe one of the liver Mets is not responding. This is all way preliminary. We have a scan ordered for this month and are waiting for it to be scheduled. That will tell the story. In the mean time I am reading up on what options are available to attack a targeted met. 

In the mean time she feels pretty awful with the usual side effects following Folfiri with Avastin and 5-.FU (how approximately named!). Of course I have to remember that without chemo.... it's just unthinkable. So infusion 12 is on the horizon with the fall being a giant blank page. Following the scan and any new news from the oncologist about what treatments are or are not in play it may be time to try metronomic chemo or find a surgeon or radiologist who can lighten the tumor load. I've been watching some of the other posts about met surgery and I want to be grounded in options for September. Another round of 6 ground and pound infusions is hard to fathom. 

Dan

Curious

Is the onc concerned ? I know my dads onc says  cea can  not predict chemo

 

SnapDragon2

DanNH said:

Pam has had no surgery yet.

Pam has had no surgery yet. It is my dream that survery will remove some of the tumor load. I am searching for surgical oncologists and radiation oncologist to at least speak with. 

Dr. Nash at MSK is agressive

Dr. Nash at MSK is agressive to a point I have heard for doing primary tumor surgery even with metastatic spread.

abita

DanNH said:

Infusion 11 is done

After an extra week to recover Pam got infusion 11.  Labs for the prior week postponed infusion looked great with CEA dropping again to 80.5. This time they drew the labs through the port. One of the labs was badly skewed with normally stable values suddenly off. The oncologist said he thought that the labs were wrong, not properly drawn and ordered new labs. These were drawn through a vein. Most of it was back to normal but what has me concerned is that CEA has plateaued at 80.7. 

I read other posts and see numbers in the single digits and teens and those are high. Pam's first CEA was 1298! I haven't seen anything close to that here. She told me that she feels something twinge in her liver and now this plateau. Creatinine is low 39 and BuN creatinine ratio is high 51. Now I am worried that maybe one of the liver Mets is not responding. This is all way preliminary. We have a scan ordered for this month and are waiting for it to be scheduled. That will tell the story. In the mean time I am reading up on what options are available to attack a targeted met. 

In the mean time she feels pretty awful with the usual side effects following Folfiri with Avastin and 5-.FU (how approximately named!). Of course I have to remember that without chemo.... it's just unthinkable. So infusion 12 is on the horizon with the fall being a giant blank page. Following the scan and any new news from the oncologist about what treatments are or are not in play it may be time to try metronomic chemo or find a surgeon or radiologist who can lighten the tumor load. I've been watching some of the other posts about met surgery and I want to be grounded in options for September. Another round of 6 ground and pound infusions is hard to fathom. 

Dan

oh, when I was first

oh, when I was first diagnosed, my CEA was well over a thousand. When you see someone mentioning the single digits,, or teens, this is most likely someone who was NED, or had small enough tumors and were on chemo to keep them "stable". So like, mine was 2 for a really long time, then when slowy rose, and then doubled from 10 to 20, so that indicates something.

worriedson714

abita said:

oh, when I was first

oh, when I was first diagnosed, my CEA was well over a thousand. When you see someone mentioning the single digits,, or teens, this is most likely someone who was NED, or had small enough tumors and were on chemo to keep them "stable". So like, mine was 2 for a really long time, then when slowy rose, and then doubled from 10 to 20, so that indicates something.

Hmmm

I am going to talk to my dad's onc again about getting CEA added to his blood work I have always wondered if we are missing something this seems to be it . But there is so much confusing info on CEA even some info says chemotherapy alone can make it rise so I am not sure how to convince the oncologist . 

abita

worriedson714 said:

Hmmm

I am going to talk to my dad's onc again about getting CEA added to his blood work I have always wondered if we are missing something this seems to be it . But there is so much confusing info on CEA even some info says chemotherapy alone can make it rise so I am not sure how to convince the oncologist . 

This tumor marker doesn't

This tumor marker doesn't work for everyone. There are other things that can cause it to rise, but it is in the hundreds I think it cleary means cancer. I am surprised his oncologist doesn't as both mine did. Maybe he already realized your father's doesn't indicate or you just didn't notice it when it was done. My prior oncologist only did once a month because my insurance would only pay for it once a month. My current only does on scan results day.

abita

worriedson714 said:

Hmmm

I am going to talk to my dad's onc again about getting CEA added to his blood work I have always wondered if we are missing something this seems to be it . But there is so much confusing info on CEA even some info says chemotherapy alone can make it rise so I am not sure how to convince the oncologist . 

There is another tumor marker

There is another tumor marker but I forget what it is called ca 199 or something. My first mets were huge. My cea pretty much shrunk at the same percentages as the scans showed, so was very good for me.

worriedson714

maybe

Maybe your right maybe oncologist knows it isn't a good indicator for my dad when I ask him he says " it doesn't help us to know that " . I am going to question him more about it though . The last thing i want is my dad going threw chemotherapy if it isn't working we need to know asap . 

SnapDragon2

worriedson714 said:

Curious

Is the onc concerned ? I know my dads onc says  cea can  not predict chemo

 

Ask onc about MCV predicting

Ask onc about MCV predicting chemo success or failure.  MCV lets you know if chemo is working.

DanNH

CEA

For us CEA seems to be a good marker. Once chemo started Pam's CEA did a crash dive! It has been an indicator of hope watching it drop so dramatically and quickly. When it plateaued we were disappointed. That's kind of an understatement.

Our oncologist didn't say anything about it. He said that her blood work looked good and treated her. The upcoming scans will tell the story. I think I may have reached the point where I built up enough courage to look at them, particularly if there is good news.

On a side note, I was comparing pricing of tests from private labs and the CEA is not an expensive test by any means.

Dan

DanNH

Infusion 12 Done. What is next

Pam completed infusion 12 with pump disconnect on the First. She suffered less hand and foot pain and peeling but it is everpresent. Nausea remained as did a sick feeling stomach. She was prescribed Priolosec, take once per day. It seemed to help a little and she took it for several days. She seemed to be doing better than normal to me. On disconnect day she seemed more hydrated than normal. Regardless, the infusion nurse gaver her a liter of fluids along with another antinausea and steroid through the port. This seemed to me to be the best care upon disconnect that she has gotten so far. 

Her appetite came back strong but nothing tastes good, if it tastes at all. The sick stomach remained. She had gotten a supplement for that from the intergrative oncologist. She got slippery elm bark and a proprietary blend called "Cool the Digestive Fire". I had been mixing them with her other powders into her shakes. She tried the Cool the digestive Fire alone in water and the relief was instantaneous! She has used it several times now when she feels she needs relief and it continues to work well. I have discontinued that in the shakes and she takes it as needed.

Departing from our normal routine, she felt good enough to head home to New Hampshire so we left on Wednesday afternoon. She slept quite a bit on the ride home but had relatively good energy when we arrived. She felt good enough that she insisted on making dinner. She had integrative treatments on Thursday but did not seem to get the usual boost back from them this time. She was a hard stick for the IV and slept a lot during treatments.

On Friday she went to the energy healer. She was very worried about Pam's condition and the toll that the chemo is taking on her. I made an extra appointment for her for Wednesday because she always feels better leaving this ND.

Pam continued to improve over the weekend with more energy but swallowing continues to be difficult. She says that her throat feels raw and partly numb. She gets food and supplements down but it is uncomfortable and tasteless except for salty things. I think that the chemo has damaged some of her taste buds along with the lining of her stomach and throat.

On Wednesday we returned to the energy healer. After the session the ND asked me about cancelling the upcoming Monday appointment because Pam was really doing better and seemed strong. I declined and she will have a session on Monday and Friday of next week. I know the term "Energy Healing" sounds like hocuspocus and witchcraft but I have to say that there is something to this. I have had four treatments myself and I really feel heat, relaxation, changes during and after them. I went into this skeptical and thinking it was something to try because we needed to try everything. I now see it as an important part of her treatments.

Yesterday's integrative treatments went very well. She got her IV easily and painlessly. She got her 50 grams of Vitamin C and hyperbaric O2 and left stronger, as she usually does.

Today was CT scan day. She had a scan with contrast dye this morning and we are awaiting results. We are praying for good news. We don't know exactly what is in store for us other than we have an appointment with the oncologist prior to infusion 13 a week from Monday.

There are a couple of things I wanted to mention that have helped Pam a lot during her treatments. Abita mentioned La Mer moistrizing cream in one of her posts. It is expensive but I bought a small tub of it for Pam. I have to say that Pam really loves it and the way it makes her skin feel. She gets a result that she can't get with the other moisturizers she has tried.

The other is a tip from SnapDragon2 and it is the Ereda Purple Amethyst Mat. The mat provides heat, infrared through a purple amethyst field. The mat is actually constructed with amethyst crystals in the fabric. She uses the mat pretty regularly. It provides her with a penetrating heat and leaves her feeling energized. It works well for her and the crystals make her strong. It is an important tool for her and it goes wherever we  are staying.

At this point we are awaiting scan results. I have been perusing surgeons and radiologist who specialize in colorectal cancer in hopes that the goal becomes more curative than paliative. We are also preparing to speak with the oncologis about metronomic chemotherapy in place of the heavy chemo that she undergoes now.

In the end it is really in God's hands and His will will be done.

Dan

myAZmountain

Surgery

What is the reason they do not want to intervene surgically? I had Folfox/avastin/5FU and was told at the begininng that there would be 12 infusions or less, I ended up doing 9 , the side effectts were not worth it anymore. I was told by an oncologist at Mayo that they only do 8 sessions at a time. Just hate to see your dear wife facing endless chemo while the primary tumor remains. Praying that her scans show much improvement!!

Real Tar Heel

myAZmountain said:

Surgery

What is the reason they do not want to intervene surgically? I had Folfox/avastin/5FU and was told at the begininng that there would be 12 infusions or less, I ended up doing 9 , the side effectts were not worth it anymore. I was told by an oncologist at Mayo that they only do 8 sessions at a time. Just hate to see your dear wife facing endless chemo while the primary tumor remains. Praying that her scans show much improvement!!

Yes, in Japan, the standard

Yes, in Japan, the standard of care is 6 sessions of FOLFOX for adjuvant therapy. It seems to be that the growing opinion is that FOLFOX 6 is the way to go and not 12.

worriedson714

praying for you and pam

Praying for you and pam been thinking about you guys alot hope you get good news from the ct scan . 

DanNH

Real Tar Heel said:

Yes, in Japan, the standard

Yes, in Japan, the standard of care is 6 sessions of FOLFOX for adjuvant therapy. It seems to be that the growing opinion is that FOLFOX 6 is the way to go and not 12.

Not an option so far

From diagnosis we were told that surgery was not an option. Mets were in lungs and liver, primary in the colon. I don't know if that will change with scan results. Last scan showed some lung Mets disappeared and liver Mets shrank.

Nothing in the way of results so far today. If the scan is read over the weekend I won't be a bit surprised if the oncologist calls. He isn't working but is always on top of everything. I can't say enough about this doc and his concern for his patients. 

Our integrative oncologist will give us his thoughts once he reads the report. That will have some bearing on what we try to do next. I think reducing the tumor load will allow the body to focus on less cancer and hit that harder. But that is the thought of a layman, a mechanicly inclined man who looks at things from that vantage. Although the goal of treatmen is palliative, it has always been to reach NED in my mind. 

Dan