Colon, Liver, Lungs, Part 2
Comments
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YesDanNH said:Data seems to show that on
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.
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
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No one gets to choose thisNewHere said:Yes
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
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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It is exhausting and
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!!!
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Infusion 9
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
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glad
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 .
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I sent you a message aboutworriedson714 said:glad
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 .
I sent you a message about what we experience and how we deal with it.
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Infusion 10 Done
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.
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article
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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Uhmmm, it is your dad's life,worriedson714 said:article
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 .
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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problem isSnapDragon2 said:Uhmmm, it is your dad's life,
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!
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 .
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If you feel your dad needsworriedson714 said:problem is
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 .
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.
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For DAN H
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
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Thank-you. She is the love ofyetti said:For DAN H
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
Thank-you. She is the love of my life.
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We are still new to this.
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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Very well said! I applaudDanNH said:We are still new to this.
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...
Very well said! I applaud you both for getting ahead of the fight.
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Hey worriedson, was it youworriedson714 said:problem is
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 .
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.
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yesSnapDragon2 said:Hey worriedson, was it you
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.
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 .
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never heard of this
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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