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Colon, Liver, Lungs, Part 2

DanNH's picture
DanNH
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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
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By metronomic, do you mean low dose every single day of chemo?

DanNH's picture
DanNH
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Yes, that pretty much summs it up. This article describes it.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4156829/

I am still researching this...

Dan

abita's picture
abita
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which daily drug is she on? Asking as someone who possibly might have to switch to a drug that is orally so from home

DanNH's picture
DanNH
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She is currently on Folfiri with Avastin and luecorovin. They are probably going to reduce her dose by 20% next treatment. 

Dan

SnapDragon2's picture
SnapDragon2
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It is a very good option (less toxic to the system).  Many times hitting hard and aggressive with breaks to let the body recover is not affective so much as mild every day.

You have to go after the stem cells ect, keep immune system high, inflammation low, blackade those cancer signaling pathways while on chemo thats kills the active cancer.

What is her MCV?

DanNH's picture
DanNH
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She is currently 95.9. 

SnapDragon2's picture
SnapDragon2
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Try to get it at 100 or above.  beta glucan 1,3/1,6 and PSK PSK PSK

Tueffel's picture
Tueffel
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I never heard of that kind of chemo. Are there studies for it? I am always going to this way if study actually prove a benefit or not. In Germany there are so many "doctors" that claim something without a study, giving people hope, and then nothing. So, if you do find something let me know. 

I hope the side effects will disappear soon or get better. The good thing is that the liver enzymes are in a good range. So whenthe,controlthe side effects she will be good for the next chemo.

My teacher told me that imaging is more important than CEA. But imaging shows success ;) I think they call it partial response for now and that is really good.

Tbh I do still hope that my dad will get NED again. So I understand that you also hope that. But my dads doctors say that they never saw a cure andI think that they never saw that kind of cancer before too. I read from some people that after 2 years on Folfiri and Avastin they did not find anything on CT anymore, so NED. This is called complete response. So let us hope together for a complete response, that the chemo will work long and then the cancer cells will get tired and do what normal cells do: apoptosis, programmed cell death. 

Tueffel

DanNH's picture
DanNH
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Nothing would bring me greater pleasure than if you and yours Papa could meet up with my wife and me to celebrate NED for both! God bless him!

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SnapDragon2
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Tueffel, research metronomic and also chronomodulated.  The best evidence for chronomodulated is from a study by Dr. Sun and Dr. John Marshall out of MD.

DanNH's picture
DanNH
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Yesterday was infusion 7. Her hand/foot syndrome has improved and her WBC was above the threshold so she was treated. It took multiple sticks to access the port but the third time was the charm. It was very stressful to see the port not working because on her first scheduled chemo the port failed and had to be fixed. This required a second surgery from which she did not recover fully for Chemo 1. It made that infusion all the more difficult. We were very relieved to see it working properly. The Lidocaine and Prilocaine cream that she was prescribed to numb the skin over the port really helped this round given the multiple sticks. She puts it on an hour prior to infusion and covers it with plastic wrap or an infusion needle dressing.

She got her Folfiri infusion and as he suggested, the Doc cut back her fluorouracil by 20%. As someone else posted on the forum, the second Folfiri was not as bad as the first. She had some tylenol for her headache (a side effect) and got a shot of atropine in her arm to ward off diarrhea.

She was pretty wrung out following her treatment. We put an ice pack on her head to mitigate the headache and ice packs on her toes to give her some relief from the hand/foot pain. She had no appetite and was able to get down some chicken bone broth she made last week with a couple of eggs dropped in. These we blended to make it more liquid. She was able to get a little food down later in the evening along with her infused seltzer. She finds it helps her a lot and is legal in Massachusetts.

She had restless night sleep (another side effect) and was up for about three hours during the night. She fell back to sleep and ended up sleeping late. She is pretty tired and back sleeping but she seems much better following this round of Folfiri infusion than the last. She was able to make her own breakfast and whipped up some fresh sugar solution for the hummingbird feeder. She has her pump connected and is really looking forward to having it disconnected tomorrow.

Intergrative Oncologist treatments with Vitamin C IV and hyperbaric 02 scheduled for Thursday. She struggles to get her shakes and supplements down following infusions. I went through all of the chemo support supplements and the oncology supplements that she is using to create an index of what each of the supplements contain. It is quite and exhaustive list. I have to go through her own herbals in order to complete the list.

That's about all for now.

Dan

Trubrit's picture
Trubrit
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Sounds like she is doing well, as well as can be well. 

Ah, how I remember hating that 48 hour hookup, and couldn't wait for it to be disconnected.  When my Onc told me that I was going to be hooked up 24/7 for six weeks, I lterally cried. How could I handle six weeks, if I hated 48 hours?  

Works out that the 24/7 hook up was allot easier than the 48 hour. I think, knowing that there was NO disconnect, made it allot easier. Of coruse, I couldn't wiat for the six weeks to be over. 

I hope she continues to gain strenght over her days off. 

Tru

DanNH's picture
DanNH
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Thanks Tru. She is really trying to get through this. Today is disconnect day so that is uplifting.

Dan

DanNH's picture
DanNH
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Infusion 8 was a carbon copy of 7 with a liter of saline added for good measure. On pump removal for infusion 7 she was dehydrated-dizzy, impaired mobility, weak... She got a liter of saline which really brought her around. Hand and foot syndrome continues to be as problem with her toes and balls of her feet. The soaks in aloe and epsoms salt solution helps along with creams. Ice packs also help with swelling in fingers and toes. I got her some eating utensils with big, soft, silicone coated handles which help with discomfort when eating. My son found them. They are made for people with arthritis. 

Integrative treatments never fail to make her feel better. Every eeek I bring her to her treatments she ALWAYS leaves better than when she came. It's 50grams of vitamin C in IV followed by 45 minutes in the hyperbaric oxygen chamber at 4PSI breathing oxygen through a mask at 10 liters.

There is something to be said for regular oxygen supplementaction as well, even when her pulse ox is 98. It always clears her head and helps with overall feeling. 

Energy healing this afternoon. That always makes her feel better too.  I have no idea how it works, only that ther is something to it. I have tried it myself and experience almost instantaneou relaxation and feeling of calm and peace. Now a week to recover, an office visit with the oncologist and the cycle continues...

Dan

 

worriedson714's picture
worriedson714
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My dad is to stubborn to try a hyperbaric chamber sadly but he has a oxygen machine for his copd would something like that help even ? 

DanNH's picture
DanNH
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Hyperbaric forces more oxygen into the cells and system than supplemental oxygen is able to. 

worriedson714's picture
worriedson714
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I know I've just always wondered if supplemental oxygen also helps the kind that goes in the nose thought you might know 

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NewHere
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 ** I posted links about this earlier in this thread (though shows up below).  On some things it may help - such as pre-radiation treatment and MAY BE some cancers in helping the chemo.  There are many less than reputable HBOT clinics out there claiming it can cure or help "X, Y or Z"  Many of these things have been debumked and others are  more theory.  Also certain patients with breathing issues need to be careful on supplemental oxygen because it can eventually make things worse.  The occasional use for a few minutes probably not a big deal, but at this point we are told to keep patients off supplemental oxygen until SPO2 is below 92% (as a general rule.)  Also regarding HBOT, it it something I absolutely love and wish it worked.  I have run chambers and my wife does it for a living.  If there was anything where it could help cancer outcomes in general, I would be in the tube every day.  Bottom line is ask your doctors about all of this and not rely on this board or others.  Including my post.  It is just a guideline and thoughts on this.

DanNH's picture
DanNH
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Data seems to show that on its own hyperbaric oxygen is not a cancer killer. Data shows that it can be helpful to other treatments or in combination with Keto diet. In the end each must evaluate and choose For themselves. I can say that in my experienc my wife leaves treatments better than when she arrives... a lot better. Even if there is no cancer benefi her overall vitality improves a lot with the treatments. That is what I personally see. Those are our results. 

NewHere's picture
NewHere
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It is great that your wife feels energized from treatments.  I mean that sincerely.   But anecodoal evidence is not data.  And some people can get led astray chasing things.

I am pushing 7 years into Stage IV cancer and have limited options.  I do intermittent fasting and been trained to run a chamber.  So I am not anti HBOT or Keto.    I LOVE  HBOT.  I have many books on it.    I just know there are many facilities that ignore safety issues (not just medical, I am talking facility).   I also tried off-beat things in the last 7 years.  To the extent I do mention some "off base" things (like TCM), I phrase it carefully and point out issues. 

But (for example) there is one guy pushing the Keto/HBOT out of Florida said some things that said things that no one who is trained in these things should ever say - and repeated it multiple times.  The first time it could be mispeaking/mistake. We all do that.  I rewound it a few times to listen.   It was extremely sloppy, because it results in death.   I do not trust someone who makes a mistake on that level over and over during a presentation. 

Again, it is great your wife is responding with feeling good by having HBOT.  But many feel people can feel exactly the opposite.  I think HBOT is awesome.  I think it is a relatively low-risk treatment.  I think the U.S. is way behind in using it (i.e. ticks me off)  even with the on label uses that are approved, let alone with respect to things like using it BEFORE a radiation session to limit damage.  I am just presenting a bit of a broader view.  

EDIT TO ADD:    Just one last to be clear (sometimes boards and emails things come across wrong).  I think you are doing a k--k a-s job.  Your wife is getting amazing support from you.  I have seen things here through the years where people are on their own.  It is incredibly sad to see.  And, in my mind, we lost people too early due to lack of support in their real lives based on what they wrote here.  You are a rock for your wife and your shirt says it all.  So keep on doing what you are doing, it provides so much.  #respect

https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/complications-of-hyperbaric-oxygen-treatment#:~:text=Possible%20symptoms%20or%20side%20effects,Lung%20damage

 

 

 

DanNH's picture
DanNH
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No one gets to choose this journey. We simply respond to it because we drew the short straw, so to speak. From there we are subjected to the anguish of the diagnosis and are immersed into this new and horrific reality. Some follow the standard of care. Some go off western medicine to alternative medicine alone. Some choose a hybrid approach of western and holistic medicine. In the end, we all have to answer for our choices. If I had my way, all choices would result in a cancer free outcome. God bless everyone afllicted with this awful burden. God bless everyone who loves or cares for anyone so afflicted. God heal those so afflicted and comfort those whose loved ones suffer so.

My posts chronicle our journey. I aim to direct no one. My posts are our experiences, nothing more. There is a lot of information out there and more, new information developing every day. One day this cancer will be considered much in the way that polio is considered today; a disease of the past. But so much suffering and so many loved ones will pay the price between now and then. Both of my grand-mothers, one of my great-grandfathers, and other relatives have already been down this path. And as impersonal time marches along, it is our turn, unwillingly, to carry the banner.

It has been a very depressing week for me; Next week is work, weekend prep, and a week from monday is infusion 9... Wash, rinse, repeat...

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NewHere
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SnapDragon2's picture
SnapDragon2
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It is exhausting and depressing at times for sure.  Maybe slow down a little to reaccess, breathe, work on what is coming into view as most important for the moment. 

You are on the right track.  Your updates on your wife's positive outcomes with personalized treatments show it.  Good job!!!  

DanNH's picture
DanNH
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Thanks SnapDragon. I'm still new to this in comparison to others here who have been fighting for years. I respect their tenacity, knowledge, and experience. They have been through what we have not faced. 

DanNH's picture
DanNH
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We are at pump disconnect now. We had an appointment with the oncologist prior to infusion and he is very happy with the progress that Pam is making. Her CEA dropped to 92 from 149 two weeks ago. We will do a CT scan around the end of August. After some discussion he reduced her Irinotecan by 20%. The side effects are better with the reduction of this and the leucovorin. I hope it remains as effect at these dosages. She seemed much better following infusion this time. Hand and foot syndrome reduced considerably. There was pain but no pealing of skin. There was some nausea and diarrhea which resulted in dehydration. 

We have learned to expect dehydration regardless of how much water she can get down. We also have learned that when she is dehydrated her right knee gets weak and it is difficult for that joint to support her weight, even with a cane. So we have learned to ask for a bag of saline. They give it to her over the course of an hour prior to removing the port pic. It helps with dizzines, nausea, strength and balance as well as helping her to feel better overall. Don't hesitate to ask for it if you think it's needed. It's a simple thing that can alleviate unnecessary suffering. 

Tomorrow is integrative support again; vitamin C IV and hyperbaric oxygen. These treatments always make her feel better and stronger. If they did nothing for cancer the are still worth it for how much they improve her strength and spirits!

We thank and acknowledge God for all of the possitive progress thus far and for helping us through the dark days at the beginning of this journey. Spirituality is as big a component to treatment in our view as any of the other things we are doing. Bigger! 

Dan

worriedson714's picture
worriedson714
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Glad pam is doing well question my dad will finally be starting folfiri next week is that what pam is on ? just trying to figure out if my dad can expect any of the same side effects . 

DanNH's picture
DanNH
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I sent you a message about what we experience and how we deal with it. 

DanNH's picture
DanNH
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We started with the cream that we use to numb the skin over the port. We used a Tegaderm IV Advanced dressing for sensitive skin. No painful skin irritation prior to this infusion. The infusion center nurse ordered IV 3000 dressings to go over the port needle and hold it cleanly in place for three days. Again, no painful, red,angry looking skin irritation this time! I wish we had asked about this months ago. There is so much discomfort involved with the infusions that this additional irritation was unnecessary. It took a seasoned oncology nurse to find the solution. 

The infusion went as well as could be expected. She got her antinausea meds with the infusion rather than subcutaneously. As a prior chemo nurse told us it lasts longer under the skin. True to her words nausea was a problem and she relied on oral anti nausea meds. We asked for extra fluids with her infusion and she left stronger than usual. She slept for a few hours after returning home. Hand and foot syndrome is cumulative and is painful. We got her a liter of fluids at disconnect. This serves two purposes. She leaves feeling stronger than without it and helps her purge the chemicals from her body. She couldn't drink enough fluids otherwise. 

For some reason it was constapation rather than diarrhea this time around. It was painful with small hard stools. The infusion nurse contacted the doctor who suggested going to the emergency room. Apparently he was concerned with bowel irritation from the chemo. We wanted to try a supposotory first and would go to the hospital if that didn't work. He agreed to that and it worked. That being said I found a good article for radiologist about chemo related problems for other organs https://doi.org/10.1148/radiol.10092129. Another thing to be aware of and worry about. 

 

She ended up using her padded eating utensils  her hands hurt. She used the cold cap which reduced discomfort to her head and cold packs for her feet. She slept a lot as her body really needed it. She slept through the 90 minute ride to integrative oncology and through her IV vitamins C. She is in the hyperbaric chamber as I post this. She always leaves feeling better. She got some additional powder supplements to sooth her intestines. They contain ginger and aloe and the herb marshmallow. I sure hope they help. I have a suspicion that the next infusion will be delayed a week to give her additional time to recover. I guess we will know for sure a week from Monday. 

worriedson714's picture
worriedson714
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Thanks for the article even though I kind of wish I didn't read it cause as you pointed out more to worry about . It really is crazy that at chemo education then mentioned none of that . Your posts always make me feel like we are missing so much in treatment since my dad's oncologist won't allow us to use any hollisitc or supplement treatments . Hopefully the side effects will get better for pam I continue to have faith in god keeping her and may dad around for a long time . 

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SnapDragon2
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Uhmmm, it is your dad's life, your dad's cancer.  Absolutely NO ONE owns your dad or his life.  If he would benefit from hollistic or supplements it is your dad's call NOT the onc.  Period!  Onc's only know chemo regimes basicly so if doing your homework for the best outcome for you dad includes pulling in off label, GO FOR IT!

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worriedson714
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Problem is I don't know what will for sure affect the chemotherapy and the oncologist refuses to even tell me that . So I am worried if we just go with supplements and other hollistic things it will affect the chemo . I'm going to push the oncologist again next week to at least tell us what is or isn't safe with chemo . But I don't know if he will even do that at the point . He told me that his policy is to have as little things in the body as there can be cause never know what will affect chemo . 

SnapDragon2's picture
SnapDragon2
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If you feel your dad needs extras then I have mentioned it before to you to call life extension.org ND's.  It is FREE and they are very up to date and informative on chemo protocol add ons.

SnapDragon2's picture
SnapDragon2
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Hey worriedson, was it you that mentioned MCV of 77?  Is so, have a hard talk with onc about that #.  The higher the MCV the more it tells chemo is working.

worriedson714's picture
worriedson714
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Yes mind you he hadn't had any chemo yet so hopefully that gets better but I plan to talk to the oncologist about it for sure also my dad's iron and hemoglobin are both low so that could explain the low mcv as well . I brought up to my dad the life extension website the problem is he believes everything on the internet is bs . So I just have to get him in to see a integrative oncologist like dan does his wife . Which I plan to work on monday then we are just going to keep it on the down low from his oncologist who does the chemo . I don't really like doing it that way but my dad is for doing anything long as he has a integrative oncologist telling him not the internet so no choice . 

DanNH's picture
DanNH
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Oncology pharmacist! Who knew? Great tip!

worriedson714's picture
worriedson714
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I have never heard of this did you find this oncology pharmacist threw the cancer center ? Or did you go directly to the hospital and ask for one ? Our nurse nav is not a part of the cancer center offically she is apart of the hospital the cancer center is in . So maybe I should ask her about this ? 

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yetti
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Dear DAN H,   I have to tell you what a wonderful supportive caregiver you are!  Your wife is extremely fortunate to have a such a wonderful involved caregiver on her team, like you !   🙏🙏🙏 for your wife ! And God Bless You !  Sincerely Yetti. Endometerial stage4 cancer survivor 

 

DanNH's picture
DanNH
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Thank-you. She is the love of my life. 

DanNH's picture
DanNH
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We are still new to this. With the initial diagnosis we went on the offensive immediately while we were still in shock of the news. We are people who previously looked beyond the established standards of care for all things health related. I say this only to explain our mindset. Applied Kinesiology (muscle testing), herbals, and natural health complimented western medicine for us. So when Pam was diagnosed it was second nature for us to seek proven treatment through oncology and then seek out supportive treatments to support the immune system and compliment chemo. We had our first integrative oncology appointment prior to our first chemo. Again, our objective was and is to let the chemo work better, not to replace it. We went to a proven integrative oncologist and have faith in his research and experience. (We also researched out to other National cancer centers and got a second opinion prior to our first infusion). 

I researched the treatments and supplements through Pubmed, cancer journals, and cancer centers and continued to find studies and articles that support our integrative oncologists treatments. Keto diet, hyperbaric oxygen, vitamin c IV, supplementation... Vetran cancer fighters from this and other forums gave anicdotal and documented support to what we were trying and offered other things that I also researched. Those are things that we have decided are right for us. We don't push them on others because it's not our place to do so. The stakes are for keeps here and we live by the consequences of our decisions. It is all very personal. We are very open minded and will turn 180 degrees if the evidence warrants it. 

Our medical oncologist is the best! He is knowledgeable and concerned and involved. He reads test results over the weekend to keep up on his patients. We are so fortunate to have him. In my mind this was ordained by God that we should have such a solid doc! That being said he works within the standard of care and is the master of all within those borders. When I mentioned integrative oncology he was very displeased and would not order the blood work we needed. We respect that and don't ask him or talk about the other treatments. He continues to hammer the cancer with his tools and we quietly continue with the force multipliers the integrative treatments provide. In the end we credit God with any gains we make in this battle. 

That is how we have chosen to take on this fight. We think it is right for us. It may or may not be right for others. That is for others to decide for themselves. We may be an example of what to do for some and what not to do for others. I pray for all of you whatever you decide...

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SnapDragon2
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Very well said!  I applaud you both for getting ahead of the fight.  

 

DanNH's picture
DanNH
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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's picture
Tueffel
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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's picture
DanNH
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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

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Ruthmomto4
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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

worriedson714's picture
worriedson714
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Is the onc concerned ? I know my dads onc says  cea can  not predict chemo

 

SnapDragon2's picture
SnapDragon2
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Ask onc about MCV predicting chemo success or failure.  MCV lets you know if chemo is working.

abita's picture
abita
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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's picture
worriedson714
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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's picture
abita
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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's picture
abita
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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.

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