Newly Diagnosed, Colon, Liver Lungs
Comments
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Insurance
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!
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Mine was covered. Hopefully
Mine was covered. Hopefully yours will be.
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First Side Effect
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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IVC should help with the cold
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.
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Good TipSnapDragon2 said:IVC should help with the cold
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.
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?
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All is going well
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
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First Chemo is In The Books
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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Timing the IVC flow might be
Timing the IVC flow might be important. Not sure of standard protocol but I let mine drip for 1 1/2hrs-2hrs.
What does your alt onc say about drip timing?
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I have been vegan for almostDanNH said: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
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.
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Good good! So they areDanNH said:First Vit C.
She is getting 25 ml over 35 min as a first dose, as we speak.
Good good! So they are starting off with 25g and build to 75g?
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Post Visit Summary
Today she got her first Vitamin C IV and Hyperbaric O2 Therapy. 02 was 100% medical grade 02 in the chamber with a pressure of air at 4psi. I must say that she her color was much better after the treatments, which I would expect with the 02. Her energy was improved. She wasn't back to normal but her voice was her usual strong voice, her appetite was good, and she had energy that she hadn't had for the past week. This was quite a contrast to yesterday where she looked absolutely spent! We booked another appointment for next week.
SnapDragon2, do you ever feel any slight stinging at the IV site?
Dan
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The first one or two I got
The first one or two I got was more a tingling sensation than stinging. I also got the euphoria affect
Maybe slow down the drip next time to 1hr, might be easier on the veins.Good both therapies went well.
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Off Chemo Week Was Good!
Following the first treatment of Vitamin C IV and Hyperbaric O2 she felt pretty good. The hour plus ride home found her with more energy, although not quite her old self. She got additional supplements to help with some spasms in her lower intestins that left her nauseas. The pain was intense but for short duration. Between that and the Mirilax the issue passed and the pain is infrequent and not intense at all. She is back to eating solid food rather than pureed foods which is a real improvement for her appetite.
As the weekend progressed into the next week she felt well enough for me to go back to work. I worked almost four full days and she took care of her meals and supplements, as well as walking the dog and visiting with some people. Her energy improved so that she is much closer to her old self. She raves about the supplement that her holistic oncologist gave her for neuropathy. the symptoms diminished considerably. We have only had one chemo session so we are learning as we go along but it seems to have made a big improvement in the cold sensitivity.
We returned to Portsmouth mid week for another round of Vitamin C IV and Hyperbaric 02. The days following the second treatment she has improved energy wise even more. Our newest grand-daughter was born this week and she is going to meet her for the first time today. We are going to supplement with 02 on the three Chemo days for a half hour and do hyperbaric 02 on the first day following as studies have shown that 02 intensifies the chemo.
We are having the labs done for the G6PD (Vitamin C) and a Circulating Tumor Cell lab to get a snap shot of what is going on at this time. It will give us a frame of reference for future tests. All of the lab results are nerve racking. I am really gunshy about reading the reports because of what bad news they could contain. So far they seem to be worse every time. I sure hope that it will change in the future.
We keep running into people who are CRC survivors of many years and it gives us a lot of hope. We are throwing everything we have at this.
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Two Chemo's Down
Her energy returned during the week following Chemo. By the end of the off week she was almost back to her normal self. I returned to work for most of the week with some appointments on Friday and a trip to Portsmouth for holistic treatments. It was nice to see her out walking the dog and talking to friends.
She finished her second infusion yesterday. She got the Avastin this time. It was held back last time out of concern about needing surgery. She started the Oxaliplatin and it went right to work. Her color and energey drained from her and she slept through part of the infusion. A few hours after we got home with her pump her energey began to come back a bit along with the neuropathy and cold sensitivity. But, it came and went. Her energy comes and goes as well. She describes it as sand through an hour glass. When it runs out it does so very suddenly and completely.
That having been said, she is doing so much better after the second infusion as compared to the first one. Whether it's the supplements, or the lack of intense abdominal pain spasms, the treatments, or a combination of all of the above, I can't tell. All I can say is that she is very much improved this time around. Pump comes off tomorrow and back to Portsmouth on Thursday for more vitamin C and Hyperbaric O2.
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ColdDanNH said:First Side Effect
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
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
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Outside the box treatment
I think it is wonderful that you are such an advocate for your wife, and I truly believe the IV Vitamin C and Hyperbaric O2 will increase her chances greatly of beating this!! I would recommend adding vitamn D supplementation as well , it is one of the most important elements for a healthy immune system. There is a great book called How to Starve Cancer by Jane McLelland if you are interested in alternative thinking regarding cancer. I am a big proponent of using alternative therapies along with conventional--and also believe that less chemo is better than too much. Praying for you and your wife!
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That's'sgreat news! She hasDanNH said:Two Chemo's Down
Her energy returned during the week following Chemo. By the end of the off week she was almost back to her normal self. I returned to work for most of the week with some appointments on Friday and a trip to Portsmouth for holistic treatments. It was nice to see her out walking the dog and talking to friends.
She finished her second infusion yesterday. She got the Avastin this time. It was held back last time out of concern about needing surgery. She started the Oxaliplatin and it went right to work. Her color and energey drained from her and she slept through part of the infusion. A few hours after we got home with her pump her energey began to come back a bit along with the neuropathy and cold sensitivity. But, it came and went. Her energy comes and goes as well. She describes it as sand through an hour glass. When it runs out it does so very suddenly and completely.
That having been said, she is doing so much better after the second infusion as compared to the first one. Whether it's the supplements, or the lack of intense abdominal pain spasms, the treatments, or a combination of all of the above, I can't tell. All I can say is that she is very much improved this time around. Pump comes off tomorrow and back to Portsmouth on Thursday for more vitamin C and Hyperbaric O2.
That's'sgreat news! She has a good protocol in place. Keep an eye on bloodwork, looking for changes and act. Do you know if she has any mutations?
My ND wants me to slow down IVC more to say like 4hrs. Goodness, don't think I can sit there that long. I'm thinking of asking if I can get it to go like I did during first mths of covid.
And YES to what AZ said. VitD levels are so important.
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Vitamin DmyAZmountain said:Outside the box treatment
I think it is wonderful that you are such an advocate for your wife, and I truly believe the IV Vitamin C and Hyperbaric O2 will increase her chances greatly of beating this!! I would recommend adding vitamn D supplementation as well , it is one of the most important elements for a healthy immune system. There is a great book called How to Starve Cancer by Jane McLelland if you are interested in alternative thinking regarding cancer. I am a big proponent of using alternative therapies along with conventional--and also believe that less chemo is better than too much. Praying for you and your wife!
Her supplementation has her on 50mcg/2000 iu per day.
I have been watching trends in blood work. ALT and AST have both jumped since the last chemo. I don't know if that is good or bad. I understand that they are markers for liver damage but I don't know if they indicate dead cancer cells or damaged liver... Our Oncologist didn't mention it and actually said her blood work looked good. I assumed he was referring to WBC and RBC.
I am concerned about her 02 levels. I ordered a pulse ox meter so that I can monitor it. It was in the low 90s yesterday. If that trend continues I think I am going to speak with him about a referral to a pulmonologist. I was a ball of anxiety thinking about it yesterday. I gave her 15 minutes of 02 at 2 liters and she perked right up. She ate well considering being nausious. She was nausious and sleepless after about 0400.
We are heading back to Portsmouth this afternoon for another Vitamin C and Hyperbaric 02 treatment.
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Vitamin DDanNH said:Vitamin D
Her supplementation has her on 50mcg/2000 iu per day.
I have been watching trends in blood work. ALT and AST have both jumped since the last chemo. I don't know if that is good or bad. I understand that they are markers for liver damage but I don't know if they indicate dead cancer cells or damaged liver... Our Oncologist didn't mention it and actually said her blood work looked good. I assumed he was referring to WBC and RBC.
I am concerned about her 02 levels. I ordered a pulse ox meter so that I can monitor it. It was in the low 90s yesterday. If that trend continues I think I am going to speak with him about a referral to a pulmonologist. I was a ball of anxiety thinking about it yesterday. I gave her 15 minutes of 02 at 2 liters and she perked right up. She ate well considering being nausious. She was nausious and sleepless after about 0400.
We are heading back to Portsmouth this afternoon for another Vitamin C and Hyperbaric 02 treatment.
Doctors seem to be very conservative about vitamin D. For me, it takes a much higher dose to increase my levels. I am on a maintenance dose of 5,000iu a day, plus I get natural sunshine most every day. In Winter, I sometimes increase to 10,000iu a day. Similarly, a neighbor with low D was able to get to healthy levels at 10K a day. Everyone must make their own decisions on this matter, but it might warrant some more research.
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