Newly Diagnosed, Colon, Liver Lungs

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  • DanNH
    DanNH Member Posts: 186 Member
    Mass General Second Opinion

    We had an appointment with Dr. Jeffrey Clark at Mass General Brigham Hospital, Cancer Center. He is affiliated with Dana-Farber Cancer Center. I was not able to attend the visit in person but did so by cell phone. We were very at ease with Dr. Clark.

    He had reviewed my wifes records and treatment plan and thought it to be the correct course of action - Folfox chemo. He explained other treatment options and the side effects, etc. He did say that he was not able to find a blood test for the KRAS mutation in her records and recommended doing it. We are awaiting the results of that test. He explained to her that she has so many lesions that surgery is not currently an option.

    My wife asked him about the prognosis and he explained that each person is different, but that the median survival for persons with similar cancer without treatment is six months, and that for persons who received treatment, median survival was about 30 months. It was very sobering but I explained to my wife some of the advice from posters on this forum and those who were stage 4 and are many years into this. Those posts give us hope. Thank-you.

    Tomorrow is surgery to correct or replace the port. We have an appointment with the holistic oncologist the following day. We contacted Dr. Bier's office at Human Nature Natural Health in Portsmouth NH and explained the issue with the port and the new surgery the day prior to our appointment. We will be able to teleconference for the first visit as an option if she is not up to the trip. I hope it is a minor surgery and we are able to attend the appointment in person. We are really looking forward to this appointment and what Dr. Bier has to offer.

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    edited March 2021 #23
    Well, you got the good and the bad news in one appointment

    I am happy to hear things are in progress, and hope the port re-placement goes well tomorrow, so that your wife can start her chemo. 

    I'm sure you have gathered from the forum, that side effects to FOLFOX are many, but not everyone gets them all. Just know to expect them to start early and probably build up as she progresses into treatment.  Best to expect more and hope for less, I say. 

    The prognosis always hits hard, and hearing 30 months must be very frightening. I got a five year prognosis - before they found my liver met - and suddenly five years seemed like five days.  Happily just about to hit 7, so you know, its just a number. 

    I like the sound of the Oncologist. Down to earth. 

    I will be very interested to hear how it goes with the holistic Onc.  What they have to offer. What they suggest. 

    Thank you for the update.  I will be thinking of your wife - and you, tomorrow, as they work on the port. 

    Tru

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    edited March 2021 #24
    DanNH said:

    Mass General Second Opinion

    We had an appointment with Dr. Jeffrey Clark at Mass General Brigham Hospital, Cancer Center. He is affiliated with Dana-Farber Cancer Center. I was not able to attend the visit in person but did so by cell phone. We were very at ease with Dr. Clark.

    He had reviewed my wifes records and treatment plan and thought it to be the correct course of action - Folfox chemo. He explained other treatment options and the side effects, etc. He did say that he was not able to find a blood test for the KRAS mutation in her records and recommended doing it. We are awaiting the results of that test. He explained to her that she has so many lesions that surgery is not currently an option.

    My wife asked him about the prognosis and he explained that each person is different, but that the median survival for persons with similar cancer without treatment is six months, and that for persons who received treatment, median survival was about 30 months. It was very sobering but I explained to my wife some of the advice from posters on this forum and those who were stage 4 and are many years into this. Those posts give us hope. Thank-you.

    Tomorrow is surgery to correct or replace the port. We have an appointment with the holistic oncologist the following day. We contacted Dr. Bier's office at Human Nature Natural Health in Portsmouth NH and explained the issue with the port and the new surgery the day prior to our appointment. We will be able to teleconference for the first visit as an option if she is not up to the trip. I hope it is a minor surgery and we are able to attend the appointment in person. We are really looking forward to this appointment and what Dr. Bier has to offer.

    Options

    If the port does not work out, there is always the option of Capox (pill plus infusion).  One of the popular forum sayings, that I have not heard much lately, is, "I am not a statistic."  Let us know what the holistic oncologist has to say.  Best of luck with all of these challenges.

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    DanNH said:

    Mass General Second Opinion

    We had an appointment with Dr. Jeffrey Clark at Mass General Brigham Hospital, Cancer Center. He is affiliated with Dana-Farber Cancer Center. I was not able to attend the visit in person but did so by cell phone. We were very at ease with Dr. Clark.

    He had reviewed my wifes records and treatment plan and thought it to be the correct course of action - Folfox chemo. He explained other treatment options and the side effects, etc. He did say that he was not able to find a blood test for the KRAS mutation in her records and recommended doing it. We are awaiting the results of that test. He explained to her that she has so many lesions that surgery is not currently an option.

    My wife asked him about the prognosis and he explained that each person is different, but that the median survival for persons with similar cancer without treatment is six months, and that for persons who received treatment, median survival was about 30 months. It was very sobering but I explained to my wife some of the advice from posters on this forum and those who were stage 4 and are many years into this. Those posts give us hope. Thank-you.

    Tomorrow is surgery to correct or replace the port. We have an appointment with the holistic oncologist the following day. We contacted Dr. Bier's office at Human Nature Natural Health in Portsmouth NH and explained the issue with the port and the new surgery the day prior to our appointment. We will be able to teleconference for the first visit as an option if she is not up to the trip. I hope it is a minor surgery and we are able to attend the appointment in person. We are really looking forward to this appointment and what Dr. Bier has to offer.

    My port clogged, so they had

    My port clogged, so they had to ''strip'' it. That involved scoping through a vein in my groin area that ran up to the vena cava area and cleared the port at that end. I was conscious for the procedure and felt the tugging and scraping on the port's end. No discomfort, but a peculiar sensation, just the same...........................................Dave

  • DanNH
    DanNH Member Posts: 186 Member
    edited March 2021 #26
    Port Repair - Integrative Oncology Support

    The surgeon was able to repair the port. She told them how nauseaous she was with the previous surgery and they sent her home with a patch with medication to treat the nausea. She was able to eat and drink when she got home, without the sickness. With the previous surgery we looked up the accupressure points for nausea and by rubbing the points she was able to keep the nausea at bay. But, that was the day following surgery which led to a very uncomfortable first night. There is a point about three finger widths from the bend in the wrist, palm side up, and a point on each of the knees. it is at the top of the tibia where the shin becomes a knuckle, on the outboard side. It was pretty amazing how much rubbing these points helps. They are easily found on the internet.

    Our visit with Dr. Bier was very important to us and the surgery threw our plans into turmoil. After calling the office we arranged a backup plan of a telemed visit. The moring of our appointment our dog woke us up at 0650 to let her out. My wife felt pretty good and we decided to make the hour and change drive to Portsmouth, NH.

    We found the office and met with Dr. Bier. He did a brief exam, including blood typing and explained that different blood types handle sugars in a different way. Following the exam we went to his office to discuss the disease and support. He outlined diet, supplementation, and treatment. Everything was research based and he explained in detail the reasoning behind each of the options.

    He created a diet for her that strictly limits carbohydrates and focuses on protines and fats. We had mostly eliminated white foods like wheat, rice, and sugar from our diets already. He also recommended against dairy and eggs due to inflamation. These foods are a big part of our diet and will be a challenge to eliminate. This is close to a Keto diet but not quite the same.

    He recommended some additional blood test to be able to monitor the effectivness of treatment and support.

    Supplementation. Because we are going to do chemo he recommended supplements for support during chemo and another regimine for fighting colorectal cancer. There is some overlap between the two. The supplements are expensive. From our perspective, we have been using supplements for many years for a variety of reasons and as I looked at the price list for each individual supplement they seemed to be in line with what we are used to paying for supplements from our chiropractor/applied kinesiology. My wife was supplimenting with many of her own herbal or mushroom supplements. He is using some of the same compounds only in a much more consentrated form. It will take some doing to organize all of the supplements and get started. That will be today's task.

    Treatment: He offered several different treatments. We opted to begin with the vitamin C IV and hyperbolic O2, once per week. Her first treatment will begin the day following her first Chemo, next week.

    So, that is where we stand as of today. If anyone wants more details or would like to compare notes please message me. I don't ask for any miracles from anyone but God, but if this will help itt is at least worth a try.

    Dan

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    Yes, psk psk psk and IVC are

    Yes, psk psk psk and IVC are very important.

    How many grams are they starting her off with?

  • worriedson714
    worriedson714 Member Posts: 333 Member
    Integrative Oncology ?

          What is intergrative oncology is it different from a normal oncologist ? If so where does one find a intergrative oncologist ? Reason I ask is my dad's oncologist literally acts like diet and supplements are nothing which has gotten my dad to think so to . Also I really like the vitamin C treatment every oncologist my dad has had just thinks chemo chemo chemo which I feel like we are missing alot more options . It sounds like this Dr. Bier is much more the type of oncologist I would want my dad to have . 

         I been following your posts and I am glad your wife got her port fixed and now she can start treatment . When my dad was in treatment was really when it became alot easier to stay positive . So I am wishing you both more good positive thoughts and wishing you both the best keep us updated . 

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    With integrative oncology SOC

    With integrative oncology SOC treatments are just one of many tools "integrated" into tackling cancer in the individual.

    I love my integrative oncologist.  He is very well studied and thinks outside the box.  

  • worriedson714
    worriedson714 Member Posts: 333 Member
    edited March 2021 #30

    With integrative oncology SOC

    With integrative oncology SOC treatments are just one of many tools "integrated" into tackling cancer in the individual.

    I love my integrative oncologist.  He is very well studied and thinks outside the box.  

    Hmmm

    Do they still do chemo and stuff ? I dunno what you mean by SOC treatments My dad's oncologist now has made so many mistakes and he literally laughes when my dad talks to him about his concerns . So my dad is looking for a new oncologist but I kind of like the chemo and supplements and diet and nature treatments all together . 

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    edited March 2021 #31
    Yes, they use some chemo's

    Yes, they use some chemo's along with other adjuncts depending on the cancer pathways that need to be road blocked.

    SOC=Standard of Care

  • worriedson714
    worriedson714 Member Posts: 333 Member
    edited March 2021 #32
    ok one more question

    Do they have integrative oncologist at the cancer centers ? Or do they have there own offices ? Well I guess thats two questions lol thanks for the help 

     

    @DanNH sorry for hijacking your post

  • DanNH
    DanNH Member Posts: 186 Member

    Yes, psk psk psk and IVC are

    Yes, psk psk psk and IVC are very important.

    How many grams are they starting her off with?

    Solution

    Does 75 grams sound right?

  • DanNH
    DanNH Member Posts: 186 Member
    edited March 2021 #34

    Integrative Oncology ?

          What is intergrative oncology is it different from a normal oncologist ? If so where does one find a intergrative oncologist ? Reason I ask is my dad's oncologist literally acts like diet and supplements are nothing which has gotten my dad to think so to . Also I really like the vitamin C treatment every oncologist my dad has had just thinks chemo chemo chemo which I feel like we are missing alot more options . It sounds like this Dr. Bier is much more the type of oncologist I would want my dad to have . 

         I been following your posts and I am glad your wife got her port fixed and now she can start treatment . When my dad was in treatment was really when it became alot easier to stay positive . So I am wishing you both more good positive thoughts and wishing you both the best keep us updated . 

    I found Dr. Bier on this list

    I found Dr. Bier on this list. https://fonconsulting.com/resources/integrative-medicine-centers/. There are a lot in different areas but check out the web sites of the ones in your area. I ruled out a few that were closer to home because they didn't focus on Cancer Support.

  • DanNH
    DanNH Member Posts: 186 Member

    Hmmm

    Do they still do chemo and stuff ? I dunno what you mean by SOC treatments My dad's oncologist now has made so many mistakes and he literally laughes when my dad talks to him about his concerns . So my dad is looking for a new oncologist but I kind of like the chemo and supplements and diet and nature treatments all together . 

    Chemo

    We are getting chemo from our regular oncologist. The support is exactly that.... support. We had a no chemo option but opted to go with the standard of care - Folfox and get support for the chemo side effects as well as a regimin for anti-cancer. Our plan is to attack from multiple fronts - traditional and holistic. We will keep you posted on how it goes because this is all new to us.

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    DanNH said:

    Solution

    Does 75 grams sound right?

    that is what I take also.

    that is what I take also.

  • DanNH
    DanNH Member Posts: 186 Member
    edited March 2021 #37

    ok one more question

    Do they have integrative oncologist at the cancer centers ? Or do they have there own offices ? Well I guess thats two questions lol thanks for the help 

     

    @DanNH sorry for hijacking your post

    Cancer Centers

    I've been at this since mid Februry. All I have learned started with web based searches. I found some cancer centers that have integrated approaches but they focus more on mental wellness, yoga, etc. We wanted herbal support and other treatments if we could find anything that had promise. There are some private cancer centers that offer this approach but they are not covered by our insurance. The Vitamin C and O2 are two that we thought had promise. The chemo and scans, etc. are covered by insurance. The additional supplements and treatements are out of pocket. so far.

    Everything that he presented to us was backed by studies and research. Message me if you like. You are not hijacking the post. I'm just trying to figure this thing out and sharing what I am learning so that others may not have to search so hard, or offer advice based upon their experiences. I have learned so much from the others here and have found hope from them.

    Dan

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    edited March 2021 #38

    ok one more question

    Do they have integrative oncologist at the cancer centers ? Or do they have there own offices ? Well I guess thats two questions lol thanks for the help 

     

    @DanNH sorry for hijacking your post

    I have no idea if they are

    I have no idea if they are part of cancer centers.  Mine is not.

    I am on maintenance chemo, ADAPT protocol and some boosters thru my integrative onc.

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    DanNH said:

    Chemo

    We are getting chemo from our regular oncologist. The support is exactly that.... support. We had a no chemo option but opted to go with the standard of care - Folfox and get support for the chemo side effects as well as a regimin for anti-cancer. Our plan is to attack from multiple fronts - traditional and holistic. We will keep you posted on how it goes because this is all new to us.

    Immune system high,

    Immune system high, inflammation low are key parts.

    I don't know alot about expanded bloodwork but talk with your integrative about inflammation markers.   There are several of them not included with standard bloodwork that are important not to let get out of control. 

  • DanNH
    DanNH Member Posts: 186 Member
    edited March 2021 #40
    First Chemo Under Way

    This time the port worked flaw! Our Oncologist ordered the vitamin D test I asked for but balked on a test for compatibility with the vitamin C IV. He asked what it was for and he wasn't happy when I told him. He then said something about asking for it but said that insurance might not cover it. My wife is having some cramps lately when we dont purée the food. He ordered an X-ray to check for a bowel obstruction. Every time I turn around there is more bad news... oh, and no Avastin because she may need surgery. My heart is breaking...

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    DanNH said:

    First Chemo Under Way

    This time the port worked flaw! Our Oncologist ordered the vitamin D test I asked for but balked on a test for compatibility with the vitamin C IV. He asked what it was for and he wasn't happy when I told him. He then said something about asking for it but said that insurance might not cover it. My wife is having some cramps lately when we dont purée the food. He ordered an X-ray to check for a bowel obstruction. Every time I turn around there is more bad news... oh, and no Avastin because she may need surgery. My heart is breaking...

    The test for IVC is a G6PD

    The test for IVC is a G6PD test.  Get your integrative to run it.  He/she should have done this already?

    It doesn't matter if medical onc is "happy" or not about IVC.  Your wife and her life are what is important!