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Colon, Liver, Lungs, Part 2

DanNH's picture
DanNH
Posts: 155
Joined: Feb 2021

Followig the good news of the scan showing good reduction in tumors, the side effects continued. Hand/Foot syndrome continued to be intense. She had some dizziness which resulted in her walking with a walking stick. It is working but it is taking it's toll on her.

We had a re-exam with the holistic oncologist who discussed metronomic chemo with us. Has anyone here been treated in this way?

I have always held on to the hope that the chemo might lead to a point where resections are possible and that glorious NED is achieved. Well, he told me that he didn't see that as likely. That news has put me in a funk that I am trying to break out of. I am a "glass half full" person. We are keeping the prayers coming and I am letting my hope rebuild. There are too many living examples of that right here on this forum!

The holistic treatments, as always, perk her right up and helped her with energy, but the hand/foot syndrome is slow to heal.

She had labs done on Saturday. We had a good weekend and geared ourselves up for Monday's chemo. On Monday morning our oncologist was not in. He works constantly and it was a rare day off for him. He had called in to the nurse supervisor in the morning and she had Pam as her patient that day. After reviewing the WBC from the labs, a hair under the low normal threshold, and the hands, she had another oncologist check her. They agreed that it was best to postpone chemo for a week as if they went ahead and treated and the symptoms got worse, they may have to withold treathments for several weeks. It seemed prudent and postponed Chemo 7 for a week with labs again this coming Friday.

In reviewing her labs, I was thrilled to see that her CEA dropped from last month's 430 to 125. It had reached a high of 1298 a few months back. This seems pretty significant to me, but being new to this I lack experience and context. Is this as good as it appears?

Her AST is well within the normal range with her SLT just above the high, normal threshold.

I need to learn more about metronomic chemo to see if we should ask the oncologist about it, and when we should ask.

 

Dan

SnapDragon2's picture
SnapDragon2
Posts: 582
Joined: Nov 2019

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's picture
DanNH
Posts: 155
Joined: Feb 2021

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. 

SnapDragon2's picture
SnapDragon2
Posts: 582
Joined: Nov 2019

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

worriedson714's picture
worriedson714
Posts: 325
Joined: Dec 2019

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 . 

DanNH's picture
DanNH
Posts: 155
Joined: Feb 2021

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's picture
DanNH
Posts: 155
Joined: Feb 2021

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
Posts: 420
Joined: Apr 2018

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
Posts: 254
Joined: Nov 2019

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.

DanNH's picture
DanNH
Posts: 155
Joined: Feb 2021

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

worriedson714's picture
worriedson714
Posts: 325
Joined: Dec 2019

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

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