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Newly Diagnosed, Colon, Liver Lungs

DanNH's picture
DanNH
Posts: 65
Joined: Feb 2021

We are new to the forum. Here is a little history.

 

My wife is 61 and pretty healthy. She is a type 2 diabetic but has her diabetes mostly controlled with metformin and diet. Her A1C was 6.0 during her last blood work. She is physically very active.

 

She began having some pain in her right side which grew in intensity over a month or so. After several doctor visits she had an ultrasound of her right side. They found five lesions on her liver. Her PCP ordered an MRI which resulted in the discover of about ten lesions. Everything else in the scan area appeared clear.

 

She was referred to an oncologist who ordered a CT scan with dye as well as a biopsy. The biopsy revealed Adenocarcinoma. The scan showed thickening of the colon wall and some lesions in her lungs. Although it was never stated it sounds like stage 4.

 

Our treatment will be Chemotherapy with Folfox. We anticipate getting a port next week and Chemo to begin the following week. There will be six rounds of treatments every other week with blood work and a CT scan after the six treatments to determine how things are going.

 

The Oncologist is pretty matter of fact, no nonsense, and is on top of everything. He has assured us that this is a tried-and-true treatment for this type of cancer and that they have a great deal of experience with it. We trust him and have a great deal of confidence in him.

 

I’m on the learning curve here and reading as much as I can to learn about this. I read his after-meeting report and saw “palliative” and my heart sank. From what I gather they are treating all of the areas at once with the intent to reduce the tumors and improve life rather than “cure” the cancer.

 

I want to get another opinion, not because I lack confidence in our Oncologist, but to see what other opinions are out there. We want to treat and defeat this cancer!

 

We are in Central Massachusetts and in the center of some great hospitals, including the one that will be treating my wife.

 

In doing some networking we learned of some very highly recommended oncologist at Boston General Hospital. The terms “world class” and “best in the world” were used in connection with them and from a highly respected and reliable source.

 

Lehey Hospital and University of Massachusetts Hospital is in our insurance network.  

 

Dana-Faber Cancer Institute, is nearby. There are actually quite a number of well-respected hospitals.

 

We are looking at Cancer Centers of America and got a tip for Block Center in Chicago from a thread on this forum. My wife’s passion is healing with herbs and such and she is really tuned in to a holistic approach in conjunction with traditional medicine.  

 

If anyone has any advice or experience about any of these treatment centers, any others in the greater Boston area, or any other national cancer centers please let me know here or by message. We want to make sure that we are taking the best approach to not only treat the symptoms but cure this cancer.

 

We are as shocked, scared, and overwhelmed as all of you were when you got your baptism by fire in this world of cancer. We are all ears and eager to learn.

 

Thank you everyone in advance for your time, attention, interest, and responses.

 

Dan

DanNH's picture
DanNH
Posts: 65
Joined: Feb 2021

I typed it in Word. Apparently I can't do that...

Trubrit's picture
Trubrit
Posts: 5389
Joined: Jan 2013

We are always sorry to gain another member of the forum.

I cannot help you with info on Cancer care out east, as I am on the other side of the states. We do have several members who are 'your way' and I know they will be on board to help in any way they can. 

It sounds like your wife jumped into the Cancer world with both feet; and yes, Stage IV will be her diagnoisis, seeing that the Cancer has spread.  

While it is good to research online, sometimes it can get overwhelming, and often there is conflicting information. Don't put much store in everything you read. Balance it out with what you are hearing at appointments and of course, our wonderful, wise and friendly family here on the forum. 

Also, don't be scared by palative care. We have several members who are on palative care, and have been for years. While it is no fun to be on the old chemo for life, you can actually live a fullfilling life. I can think of a few here who are doing really well, considering their prognosis. I won't name names, but hope they chime in themselves. 

The port, when place right, is a wonderful thing. Saves those veins from allot of harsh treatment.  Just an idea here. Maybe before your wife goes in - if they don't offer - talk about where the port will be placed. Mine was right under my bra strap, and it was terribly uncomfortable. Once I went braless, I barely knew it was there - it is a bit like a little alien under the skin, a very interesting little thing.  

FOLFOX can be hard on the body. Some folks breeze through it, but be prepared for some rough days ahead. I kept a notebook with every single side effect I experienced, and talked about each one when I went in for my infusions.  Notebooks are great! 

I don't know how much you know about FOLFOX, but there are some standard side effects that are usually experienced right off the bat, one being sensitivity to cold. Cold drink. Cold knife and fork. Cold refrigerator. Cold anything. I kept a pair of gloves by the fridge after too many dropped yogurt cartons - what a mess to clean up.  

I do think a second opinon is always good, no matter how much you love your Oncologist. 

I wish your wife all the best as she moves forward into treatment. I wish you all the best, as Cancer is a family diagnosis.  It sounds like she has a wonderful husband by her side and that will serve her well. 

Tru

SnapDragon2's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

You are on the right track!

Don't take surgery advice from an oncologist and visa versa.  Have you had a surgery consult yet for the colon/liver/lungs?  If not, find the ones within the specialty of CRC, board certified, to get their take about the possiblilties down the road.  What do they need to see in bloodwork and on scans to be a condidate is one big question.

Go after the cancer with everything available, western and eastern.  I researched Block also but went a different route.  They have a great reputation so Yes pursue the option. 

LifeExtension.org is a fantastic start for information also on cancer.  The Moss Report is also informative.

Annabelle41415's picture
Annabelle41415
Posts: 6692
Joined: Feb 2009

Welcome to you and your wife and sorry that you have to join our group.  There is nothing wrong with getting a second opinion, and it is often encouraged for you to do so.  This will also confirm what the doctor has diagnosed so far and give you peace of mind that you aren't going to second guess your current doctor.  I'm not able to give you any information on the hospitals you have listed, but I've heard of most of them. 

Each doctor will approach a patient differently based on how treatment is going and their circumstances.  While there are people on this board that has had similar situations with your wife, I'm not able to help you with the treatment that she might be going through.

Please stay off the internet for any information regarding cures, and treatments.  A lot of the information on the internet is outdated and shouldn't be used for medical advice.

Please don't hesitate to come back on the board after your wife has started her treatment to ask any questions.  We are a caring group that can help you both in this rollercoaster of life you will soon experience.

Wishing your wife the best going forward.

Kim

 

Tueffel's picture
Tueffel
Posts: 210
Joined: Feb 2020

Hello,

I am sorry for the diagnosis of your wife. Cancer is harsh. My dad is the one with stage 4 colon cancer so I know how terrifying it is. 

It was mentioned already and even after a year I still have this problem: google is not your friend. You will find 20 bad studies until you find one you like. So dont do that. Your wife is not a study.

What I would recommend is a tumor board. My dad is treated in one and it works fine. A tumor board consists of radiologist, internal doctors, surgeons, oncologist, etc. They meet once a week and update and discuss the treatment. My dads oncologist was up to date after he had not seen my dad for 3 months. He knew how the surgeries were, bloodwork, recent scans. Yes they are at a specified colon cancer in Germany, so they are under one roof but cancer is a disease with many faces and it is good if all doctors are up to date, knew what happened etc. I only have good experience with it, my dad feels in good hands there. 

It is good to have doctors letters etc for your own if you want a 2nd opinion. 

Tueffel

DanNH's picture
DanNH
Posts: 65
Joined: Feb 2021

Tueffel: 

We met with my wife's PCP last week and this came up as part of the discussion. She explained that each case was an individual one which the Oncologist brought up to a board made up of others who practiced Oncology in different disciplines - surgery, radiology, etc. They discuss the case from their prospective and come up with a treatment plan. So, unknow to me, there was in place the very board you spoke of. That really brought me some peace of mind and thank-you for mentioning it.

Dan

Kaleidoscope49
Posts: 24
Joined: Aug 2020

Knowing that there was a TEAM of specialists that would review my scans, etc and agree on the best course of treatment for my particular situation helped me feel so much more confident of the road I was getting ready to go on. 

DanNH's picture
DanNH
Posts: 65
Joined: Feb 2021

Our current plan is just Chemo. I asked about other options and he mentioned other chemo options. Maybe he thought that we weren't ready for the raw reality... The tumor board sounds like a good plan. I think I might get that other than where we are currently, unless he hasn't shared that with us yet. Maybe one step at a time...

DanNH's picture
DanNH
Posts: 65
Joined: Feb 2021

I messaged Cancer Centers of America. They were very nice but my insurance was not contracted with them so it was a no go. They gave me Colon Cancer Alliance and Cancer.gov as references.

NewHere's picture
NewHere
Posts: 1292
Joined: Feb 2015

Dana-Faber is highly regard. Yale and Memorial Sloan Kettering are also relatviely close, if you are looking at some of the cancer specialists that are highly rated and relatively close.

Also if you go to grandrounds.com you can get remote second opinions.  They handle everything, gathering documents and getting reports.  

 

 

 

impactzone's picture
impactzone
Posts: 542
Joined: Aug 2006

So sorry you are here. You can read my short story but stage 4 guy here dx almost 15 yers ago now. I had liver and lung mets. I agree with all written so far. I wanted to be as aggressive as possible. I always took surgery when possible. I have had 4 thoracic surgeries along with liver and colon. In between chemo. But I am here today and doing well with 6 years clean so far.I went to Stanford on the west coast. I always felt better when I felt bad as it seemed to me that the chemo was working. That might not make sense but I had a discussion one day with my onc and the possible unknown side effects of vitamin or herbal interactions with chemo. If ginger tea made me feel better maybe it was interfering with the chemo? The disease is so unfair and unpredictable. For what its worth here's what I thought and did, It is a marathon not a sprint, the internet is not always your friend, confidence matters, eat healthy, walk, took a baby aspirin when I was allowed, scheduled surgery, take care of yourself and people around you - caregivers matter, eliminate as much stress as possible ( for me social media),if you are religious that helped me,  There are many more people out there than you think who have gone through all of this and are doing great. All my best.

Chip

Elka111's picture
Elka111
Posts: 1
Joined: Jul 2019

Hi Chip, I've read your post and felt very encouraged and calm. Knowing that there are people here with long term survival stories makea me feel hopeful. Thank you for that!

beaumontdave's picture
beaumontdave
Posts: 1115
Joined: Aug 2013

I'm sorry, as well that you and your wife are on this path we share here, but here is good place to share it with, and many of these folks has learned so much. They've brought you more than I could tell you, as another ''west coaster'', but I noted you mentioning your wife taking Metformin regularly, as a diabetic. We had some folks, years back, swearing that Metformin was useful in preventing CRC or it's recurrence, and I never heard a definitive answer to that ''magic bullet'', until reading your story. Even with all the well-read and science-based folks here, some of us still get excited at the idea of some new or old rediscovered, repurposed compound that will kill or stop cancer in it's tracks. Hope can be unbridled and contagious at times. Keeping it all in context, I hope your wife has an excellent response to the Folfox, and minimal discomfort, as I did during my chemo. Cold was annoying, cold water felt like an electric shock on my hands, but hotter weather took the energy right out of me, while working as a contractor. Still I got through it better than most, and I hope she will too. Getting to a ''new normal'' takes time, but as is said, this is a marathon your on, try to stay in the now, the moment and get what you can out of each ''now''. We took scenic drives after appts., found new places to eat, did things on a lark, as we could. You plan your moves, lay out the path you'll take, but live in the present, the biggest thing I learned here. **** luck to you both...............................................Dave

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beaumontdave
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First time I've seen the word ''good'' deleted here. I'll try to watch my language more closely, lol!

Trubrit's picture
Trubrit
Posts: 5389
Joined: Jan 2013

Why did good get deleted?  I wonder if I type a "bad" word, if that will stay visible. 

How funny! 

Tru

DanNH's picture
DanNH
Posts: 65
Joined: Feb 2021

We have had two weeks of delays due to scheduling. The CT scan was delayed. It didn't get scheduled until my wife called the office and told the receptionist that the scan was for a possible cancer diagnosis and and time was of the essence. The woman solved the problem and got the issue through to the insurance office. I don't' know if the holdup was in the Oncologist office or the insurance company. I SUSPECT that the e-mail got lost in someones in box for a week. My head was ready to explode!

Following the appointment with the Oncologis, he ordered a port and chemo. Well, the chemo office called to schedule the treatment and the port had not been done yet. The woman became very upset and made a few calls. We got a call from a cold scheduler who scheduled it for next Wednesday. The Chemo is now scheduled for the following Tuesday. By right, she should have had her first treatement this week! And on top of it, the nurses are supposed to go on strike the day preceding her first treatment!

In the mean time, she is getting tired, loosing weight, and has a limited appetite. It is all very frightening to me. I am trying to manage her meals and will start on supporting her full time tomorrow. I am on a leave of absence from work, essentially. I don't know what to expect so I have put my work on hold until I figure it out and can either go back to finish my career or retire earlier.

Tomorrow we have an appointment with her PCP and I am going to ask for a referal to another hospital for a second opinion.

We made an appointmet with a Doc who practices Intergrated Oncology Support. We have the first appointment the day after her pump is removed following her first treatement. There is another holistic Doc who lives in our town and supports cancer patients as well. We have a call in to her for an appointment.

A friend set us up with a little organic pasture raised poultry and beef. I am trying to move away from feed lot food to pastured or silage fed from here in New England.

The outpouring of support from friends, family, my co-workers, employer, and the community is astounding! We spent our lives as people who help and support others in their time of need. It is a difficult thing to suddenly be on the other side of that equation.

All of the input from everyone is more helpful than I can express. The past few weeks I have spent every day on the edge of anguish. Distractions help for a little while but then the reality that seems like a bad dream come ripping back into focus.

Thank-you for letting me vent!

Dan

DanNH's picture
DanNH
Posts: 65
Joined: Feb 2021

Today is first chemo day. The next time she has chemo will also be first chemo day. The port they put in last week isn't working. We left the infusion center and I brought her over to see the surgeon who is sending her for an MRI with dye to see what the issue is. If they do enough of these it must happen from time to time. We have appointments every day this week and two next week. It is going to throw everything off schedule and she still hasn't had any treatments. Did I mention that there is also a nurses strike and today is the first day? It seems like a commedy of errors today...

Trubrit's picture
Trubrit
Posts: 5389
Joined: Jan 2013

And I know that you think that is an understatement. 

I remember the first time my chemo was postponed. I thought I was going to die, literally.

Every little set-back hurts the phyche. I think we have all been there, and feel the pain you are both feeling now. 

Yes, sometimes those ports do not do what they should. Others on the forum have experienced port troubles, and an share. I was blessed to have a working port all the way through treatment.

I'm also sorry to hear of the nurse's strike. While I am sympatetic to there needs, it is hard to be on the wrong end of the dispute. 

Thank you for the update.  May the next  one be on a more positive note.  We are all here for you.

Tru

 

DanNH's picture
DanNH
Posts: 65
Joined: Feb 2021

We have a second opinion at Mass General tomorrow and a holistic Oncologist Friday... provided we don't have surgery on Thursday instead... Our current Oncologist is very competent and I have great confidence in him. The nursing staff is wonderful. It's just a huge let down and very stressful!

 

Speaking of stress, our Chiropractor turned us on to a stress reducation technique called EFT Tapping. I found a short video on YouTube and we tried it. As ridiculous as it sounds it brought our stress level from a 7 to a 3 in just a few minutes. My wife got pretty worked up today. She is very stoic but it took its toll on her. I found the YouTube video, plugged in her ear phones and handed her her smartphone. Within a few minutes she went from an 8 to a 3! Just a for what it's worth tip.

Still waiting on her MRI. I think no chemo today. It's 3:15 pm... 

Kaleidoscope49
Posts: 24
Joined: Aug 2020

Hi Dan, welcome to the group. I have a friend in the Boston area that has, unfortunately, battled cancer more than once. She highly recommends the Dana Faber institute as well as Sloan Kettering. 

As it relates to your prior post regarding food sources, my oncologist was very clear with me on what should/should not be a part of my diet after I was diagnosed in August 2020 with stage 4 rectal cancer at age 49. His guidance was to limit (or avoid) red meat. Basically eat poultry or fish for the most part. And - news to me - anything with four legs is considered red meat. Go with two legs or no legs 😉. He also said to eat "clean", avoiding highly processed foods. At the time, I was a Diet Coke junkie and he told me not to drink it - quit cold turkey the day before I started my chemo. Also, try to get your wife her nutrients and vitamins from foods and not supplements whenever possible. 

I did 8 rounds of FOLFOX with Leucovorin and then six weeks of radiation with oral chemotherapy. Finished that up mid-February and am now on hiatus while my body recovers from the chemo and radiation before I head to surgery in mid-May. It's been a long road, but I keep telling myself it will all be worth it. 

Prayers for your wife's healing. 
Jenn 

DanNH's picture
DanNH
Posts: 65
Joined: Feb 2021

I appreciate your response. We will be getting a diet from our holsitic oncologist hopefully Friday, provided there isn't some other problem that rises up out of nowhere. Waiting for a COVID test appointment that won't interfere with our second opinion appointment this afternoon. The Doctor is affiliated with Dana-Farber. Just got the call and heading out now.

 

Dan

DanNH's picture
DanNH
Posts: 65
Joined: Feb 2021

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.

SandiaBuddy's picture
SandiaBuddy
Posts: 1167
Joined: Apr 2017

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's picture
beaumontdave
Posts: 1115
Joined: Aug 2013

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

Trubrit's picture
Trubrit
Posts: 5389
Joined: Jan 2013

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

DanNH's picture
DanNH
Posts: 65
Joined: Feb 2021

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

abita's picture
abita
Posts: 977
Joined: Dec 2017

 I have been vegan for almost a decade now. The dairy and egg replacements are amazingly good. You should see if she is allowed to eat the Just Egg product. It comes in a liquid and can be used to make "scarmbled" eggs. I make it with spinach and vegan cheese, with hot sauce and love it. They have a convenient folded patty that just has to be heated up, for sandwiches and such. I use a cashew milk coffee creamer. There are very good vegan cheeses, sour creams, etc. In fact, this weekend, I plan on making a vegan lasagna with beyond meat ground, follow your heart mozz, and kite hill ricotta.

My point, there are so many subs out there to make the giving up of dairy and eggs easier.

 

SnapDragon2's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

Yes, psk psk psk and IVC are very important.

How many grams are they starting her off with?

DanNH's picture
DanNH
Posts: 65
Joined: Feb 2021

Does 75 grams sound right?

SnapDragon2's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

that is what I take also.

worriedson714
Posts: 223
Joined: Dec 2019

      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 . 

DanNH's picture
DanNH
Posts: 65
Joined: Feb 2021

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.

SnapDragon2's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

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
Posts: 223
Joined: Dec 2019

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 . 

DanNH's picture
DanNH
Posts: 65
Joined: Feb 2021

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's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

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. 

SnapDragon2's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

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
Posts: 223
Joined: Dec 2019

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's picture
DanNH
Posts: 65
Joined: Feb 2021

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's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

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.

DanNH's picture
DanNH
Posts: 65
Joined: Feb 2021

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's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

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! 

 

DanNH's picture
DanNH
Posts: 65
Joined: Feb 2021

That's the test. I was trying to get our oncologist to order it so that insurance will cover it. If not I will get it through the integrative. I am waiting on a quote for it and some other labs. 

I long for the day we can be on maintenance Chemo! God willing!

SnapDragon2's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

Mine was covered.  Hopefully yours will be.

 

DanNH's picture
DanNH
Posts: 65
Joined: Feb 2021

Chemo went well and she went home with a pump. She had a pretty hearty appetite and apart from being tired, was in good spirits. The cold sensitivity didn't take long to show up! Door knobs and water were the two things that popped up first. Hand washing requires letting the water come up to temperature first. The kitchen sink is a long run from the water heater. The bathroom sink is about directly above the water heater. I think I can do a little plumbing and get the water to the bathroom sinks and shower on a shorter route so that it comes up hot quicker.

Has anyone tried putting anything on the door knobs to stop the shock of the cold metal? I am trying to come up with some kind of rubber that will cling to the knob so that it doesn't slip in the hand. Rubber is not a good conductor of heat, or cold.

As for food, we are trying to let it come up to room temperature at least. I found this cool cooking temp probe on Amazon for about $12. It unfolds like a jack-knife and has a very thin, sharp, long probe. It is proving invaluable. I heat up her soup to 140 degrees and I don't have to taste or feel to see if it is right. I strir the soup, open the probe, and check the temp; heat until it hits your target temp. I used it with cashew butter for her yesterday. I ordered a second one.

We are waiting to hear the x-ray results.

Dan

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Annabelle41415
Posts: 6692
Joined: Feb 2009

That is a very hard part of the treatment is the cold sensitivity.  Watch out even going into a grocery store.  Things that you don't think will affect you will.  It is cummulative so it will come on faster and last longer and longer.  Another thing is the "first bite" syndrome.  When she eats, she might feel a very strong surge sensatition like eating the most sour thing ever.  It usually subsides after the second bite - but it takes you for a ride.  I'm still getting it 12 years later.  Wishing your wife the best.

Kim

SnapDragon2's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

IVC should help with the cold sensitivity and neuropathy (if she begins to develop it).

For IVC and O2 therapy, a word of advice since she is on folfox; I would not recommend the IV put below the vein in the crook of the arm.  They put mine in my wrist once and it was painful due to the cold sensitivity.

 

DanNH's picture
DanNH
Posts: 65
Joined: Feb 2021

I will be there for the treatment so I will be sure to mention it. She started to develop a little nueruothapy today. She also started having difficulty swallowing pills last night. Does that sound familiar to anyone?

Trubrit's picture
Trubrit
Posts: 5389
Joined: Jan 2013

And by that I mean, your wife is starting experincing some of the usual side effects from FOLFOX. 

Try buying those kiddie proof door handle covers. She can squeeze them and open the door without touching the metal. 

I kept gloves by the fridge, after dropping a whole big carton of yogurt on the floor - what a mess. 

I had the swallowing problem.  It felt like everything got caught in my throat and then in the middle of my chest. My Oncologist told me that there is no blockage or restriction and that is was all phantom sensations.  I tried to eat tiny bites of everything, though I still got that sensation of something getting stuck.  So yes, that sadly, is also a side effect. 

Winter is not a fun time to be doing the chemo. So much cold. I had treatments Jan - July, so I got the best of both world. 

Be sure and keep a keen eye on the neuropathy, and let the Oncologist know at every visit if it is progressivly getting worse. I was not on the ball with my neuropathy, and thus, still have it today - although nowhere near as bad as it was during and after chemo/radiation. 

I hope your wife is keeping her hands and feet moisterized. DO NOT let the skin dry out and crack. Once it cracks, its the devil to heal up. 

And no injuires. My Oncologist stressed this on one visit, I went home and promptly cut myself with a knife. It took months to close up.

So many things are going to pop up. We are here put your mind to rest or guide you to the right people. 

Wishing you both all the luck in the world that side effects keep minimal. 

Tru

DanNH's picture
DanNH
Posts: 65
Joined: Feb 2021

She finished her first chemo today. Just as we were leaving to go to the infusion center she felt what she described as "bee stings" in her neck near where the port tube is. She called the office and they told her to shut the unit down. Once we got in, they started the unit back up to finish the dose and there were no further sensations. Neuropathy is minimal but cold sensitivity is still there.

She was totally gassed! She had very low energy. When we got home she napped and felt a little better. As the day wore on her energy kept improving. She is nowhere near normal but much improved from this morning. I don't know if it was the food, the end of the treatment, or naps, or all of the above that helped her regain her energy.

The X-ray revealed no blockage so it will be a little Mirilax for a few days and maybe we can get back on solid foods.

We have our first vitamin C IV is tomorrow along with the O2 therapy. All of the pills, powders and oils are a challenge to get down and that is just for chemo support. There is another regimine for anti-cancer. She hopes to start that one soon.

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