Newly Diagnosed, Colon, Liver Lungs

NewHere

DanNH said:

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.

02 Therapy?

Do you mean hyperbarics?  

SnapDragon2

DanNH 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.

 

Chemo will do a number on the

Chemo will do a number on the liver.  Stay away from folic acid for sure, it is toxic to the patient.  Consume natural folates instead.  Look up all the good things liverwurst has in it.  

Talk to your ND about niacin and reishi maybe if she is not already taking it.  It might or might not interfer with chemo, Idk.

myAZmountain

DanNH 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.

 

ALT and AST

These were elevated for me during chemo (FOLFOX/Avastin) as well, came back to normal a few months after last chemo.  I had a second opinion at Mayo Phoenix that was unpleasant, but the oncologist did say their protocol for FOLFOX was 8 sessions only---I had 9, and have not had any reoccurence since last chemo Nov. 2018.  Also if she starts having a lot of neuropathy be sure to speak up, they can cut the dose and it is still effective.  I whined as soon as my fingers stated feeling numb and they cut it back. 

DanNH

Holistic Treatment 3 is done

I took a very tired and run down woman to her treatments today. She was markedly improved post treatment. I think it is the hyperbaric 02 that charges her up.

She had a rough night with nausea and abdominal pains. The nausea meds took care of that.

She slept after the IV while waiting for the Hyperbolic chamber and I am sure that it helped. They added some bicarbonate to the IV solution and that made it less stingy. We are going to get blood drawn tomorrow for G6PD and hopefully we can increase the Vitamin C next visit.

The neuropaty comes and goes. She is taking a supplement called Glutamine Powder for seven to ten days following her Chemo. She raves about how it diminishes the neuropathy. She is pretty gassed now and heading off to bed. Her SpO2 was 98. That made me happy!

DanNH

NewHere said:

02 Therapy?

Do you mean hyperbarics?  

Hyperbaric

Yes. That is the correct term. 

SnapDragon2

DanNH said:

Holistic Treatment 3 is done

I took a very tired and run down woman to her treatments today. She was markedly improved post treatment. I think it is the hyperbaric 02 that charges her up.

She had a rough night with nausea and abdominal pains. The nausea meds took care of that.

She slept after the IV while waiting for the Hyperbolic chamber and I am sure that it helped. They added some bicarbonate to the IV solution and that made it less stingy. We are going to get blood drawn tomorrow for G6PD and hopefully we can increase the Vitamin C next visit.

The neuropaty comes and goes. She is taking a supplement called Glutamine Powder for seven to ten days following her Chemo. She raves about how it diminishes the neuropathy. She is pretty gassed now and heading off to bed. Her SpO2 was 98. That made me happy!

Bless her!  I feel for her,

Bless her!  I feel for her, been there with the fatigue.

It is wonderful she has you.

Let us know how the test goes.  Hopefully she will be good for a big boost of C.

DanNH

SnapDragon2 said:

Bless her!  I feel for her,

Bless her!  I feel for her, been there with the fatigue.

It is wonderful she has you.

Let us know how the test goes.  Hopefully she will be good for a big boost of C.

Holistic 4

This one went well. She got an increased dose of vitamin c IV and her hyperbaric 02. She swears by the glutamine for neuropathy. 

I found some door knob covers on Amazon. They are rubber or silicon and fit right over the knob. They don't conduct heat so the should make a big difference with cold sensitivity. We are spending the weekend with her family and getting ready for Monday chemo 3. 

DanNH

Chemo Three Infusion

Yesterday was Chemo 3. This was a much better experience. The Lidocain ointment over the port an hour prior to hook up worked very well to numb it. A dab of cream and some plastic over it to hold it against the skin. The oxilaplatin didn't seem to hit her as hard this time. Her color changed a little but not as dramatically as last time. She didn't sleep at all during the treatment this time.  At the end of the treatment the cold sensitivity had set in and it was gloves on.

I had hot soup for  her during her infusion and she took that well and had a good appetite when she got home. I made her a lamburger for dinner. Lamb is a pretty high calorie meat and she had that and some asparagus and mixed veggies. It has been only the last four or five days that her appetite was such that she really wanted to eat anything. We got about 1700 calories into her yesterday which was pretty good. I would like to see it higher but it is a challenge.

The neuropathy was there too. I mixed her up some glutamine powder in water and it seemed to help pretty quickly. She really swears by that stuff. It was from her holistic oncologist as one of her supplements, 2X per day for 7 - 10 days following chemo.

Important safety tip! She made a smoothie last night and forgot about the cold milk. It hit her throat and the cold caused her throat to spasm. Her breathing became very difficult with exhalation OK but inhalation a real struggle. This lasted about a minute and then subsided. It was very frightening to witnesss and I can only imagine what it was like to experience.

No nausea so far this time around. Her energy is much better that the last two. She napped for about two hours yesterday when she got home. She is doing much more on her own following this treatment.

Sleep has been a problem. She wakes up every night at around 0300 until around 0500. Her holistic Doc told her that this is the time that the liver heals and with her liver mets I wonder... It is a rare night that she sleeps through the night.

Supplemental O2, 15 - 30 min at 2 liters seems to help her feel better.

Pump is off tomorrow and Holistic 5 is on Thursday.

Dan

SnapDragon2

Sounds encouraging and

Sounds encouraging and hopefully it continues.

DanNH

Chemo 4 Tomorrow

This has been an interesting cycle. As I mentioned in my earlier post, my wife was not so badly impacted energy wise from this round immediately following chemo. She also didn't bounce back with energy very quickly either. She had really bad constipation which was very painful and took several days to get under control. We are heading that off for round for with some preemptive Mirilax. The Neuropathy was worse this round as well. By Wednesday night, after the pump was removed, she didn't feel well enough to face the ride to Portsmouth Thursday. Well, Thursday came and we went anyways. Following Vitamin C and Oxygen she had improved quite a bit and was very happy that she went.

She did feel a bit better over the weekend and she had a chiropractic appointment on Monday. She felt better following her adjustments and the Chiro - applied kinesology - muscle tested her on the Rick Simpson Oil. She tested very strong for that and it built our conficence to try it, but we haven't built up the nerve to try it yet.  She had her energy healing session in the afternoon and felt much better after that. I worked her off chemo week and she did well caring for herself and the dog while I was at work. Chemo brain continued to be a problem.

For her off week holistic treatment she had the maximum dose of Vitamin C IV and we both fell asleep waiting for the hyperbaric chamber. She was good through hyperbaric oxygen and very much invigorated following the treatment!  The ride home went well and she continued to gain energy. Her energy continued to improve and she was much stronger going into the weekend. She was almost like her old self. It was such a relief for our children and her family to see her doing so well. Her mother is 80 and is having trouble watching her first born go through this.

And now it is Sunday morning and in 24 hours we will be back in the infusion center for round 4. She has not made up her mind to try icing during chemo so we will put that off for another time if she changes her mind. She really laments her hair loss wich is gradual but steady.

The Friday labs did have some good information for us. Her AST and ALT dropped considerably. AST is in the normal range and ALT is high but not nearly as high. Being new at this I am looking at this as quite positive. From my perspective it was nice to look at a lab and not get bad news. It got to the point where I could hardly bear to look at a lab or report for fear of what bad news would come next. I hope and pray that this bit of good news becomes a trend.

Dan

 

worriedson714

vitamin d and c

Question does vitamin d and c help in pill form also or does it have to be IV ? we can't afford the hollistic doctors so just curious . 

DanNH

worriedson714 said:

vitamin d and c

Question does vitamin d and c help in pill form also or does it have to be IV ? we can't afford the hollistic doctors so just curious . 

Vitamin C and D

The vitamin D3 that my wife gets is oral, 2,000 mcg. The vitamin C is IV and is a dose to large to give orally. I misplaced my notes so I cannot give you the doseage at this time.

DanNH

Chemo 4 followed by...

Chemo 4 was followed by more weakness, hand and foot soreness, terrible taste in the mouth and nausea. That seemed to settle down a little and yesterday was the worst constipation to date! Yesterday afternoon she was incapactied in pain, nauseous, vomiting,and terrible chills without fever. Thanks to a post on this forum about constipation I found suppositories. I followed up some Amazon reviews and went to the store to get some. When I got back home she was in bed asleep on an electric blanket with a heating pad on top and finally warm.

She deployed the suppository and fell back asleep. 45 minutes later she got up with a sense of urgency! It worked its magic and when she emerged the jam had been relieved and all of the pain and nausea was gone. In another hour we were walking the dog around the common and followed up with dinner! 

I am posting this so others don't have to endure this disabling pain. She was prepping with Mirilax a day prior to chemo and the days following along with Ducilax stool softeners. She may have had insufficient water. No one at the infusion center ever mentioned suppositories. We won't be without them in the future, I can assure you of that. She is very pain tolerant but this was over the top yet so simple to resolve!

marbleotis

Hi Dan - Sorry You Are Here

Dan,

So sorry about your wife and sorry you are here BUT you came to the right place.  This forum is great and very supportive.  I was Dx'ed stage 3 signet cell colon cancer in 2012.  I had 12 rounds of 5FU and Oxcilplatin after the removal surgery. I am now NED (No Evidence of Disease) for 9 years.

Stay off of Google.  You cannot trust the info.  Go to the really good sources.  Please also do not feel bad about getting a second, third, forth or hundredith opinion.  You need to feel good with the choices.

I'd also would bring a notepad to all appointments to take notes but also to log any questions I had.

Please keep us updated.

 

All the best!!

DanNH

Oncologist Visit and Chemo 5

We are in the middle of chemo 5. We started out with a visit with the oncologist. Her blood was normal, liver functions OK (improvement) and CEA dropped from about 1300 to about 400! He was very happy with those results. He ordered a scan  following chemo 6 to view the progress and effectiveness. 

She got the preliminary meds and Avastin. We tried the cold mits prior to Oxilplatin  and about 20 minutes into the infusion she could feel something in her throat. They stopped the treatmen and called the Doc. She had a reaction and they gave her Benadryl. That calmed the symptoms and they continued with the treatment. She is still going home with her pump. The Oxilplatin was doing a great job but is now off the table. The Doc will use som else in its place. They said that this was not uncommon. 

The team was really on top of this and reacted quickly. The jury is still out on the cold mits as we didn't finish treatments with them. 

SnapDragon2

If oxa is off the table then

If oxa is off the table then maybe xeloda pills would be a nicer chemo.  No more port infusion or bag to carry and keep up with=less stress.

abita

DanNH said:

Oncologist Visit and Chemo 5

We are in the middle of chemo 5. We started out with a visit with the oncologist. Her blood was normal, liver functions OK (improvement) and CEA dropped from about 1300 to about 400! He was very happy with those results. He ordered a scan  following chemo 6 to view the progress and effectiveness. 

She got the preliminary meds and Avastin. We tried the cold mits prior to Oxilplatin  and about 20 minutes into the infusion she could feel something in her throat. They stopped the treatmen and called the Doc. She had a reaction and they gave her Benadryl. That calmed the symptoms and they continued with the treatment. She is still going home with her pump. The Oxilplatin was doing a great job but is now off the table. The Doc will use som else in its place. They said that this was not uncommon. 

The team was really on top of this and reacted quickly. The jury is still out on the cold mits as we didn't finish treatments with them. 

I had an allergic reaction to

I had an allergic reaction to oxaliplatin on my 5th or 6th infusion also.

DanNH

abita said:

I had an allergic reaction to

I had an allergic reaction to oxaliplatin on my 5th or 6th infusion also.

Another Chemo, Another Side Effect

Abita: Do you remember what they switched you to? We are not sure what will be next. We have another infusion appointment for May 24th. As harsh as the Oxalplatin was it was working so we are a little disappointed. But then, maybe this is a good thing, to attack with another chemical that the cancer has not had an opportunity to mutate against. The Doc mentioned a couple of other drugs and mentioned different side effects but it was all Greek to me!

Tueffel

DanNH said:

Another Chemo, Another Side Effect

Abita: Do you remember what they switched you to? We are not sure what will be next. We have another infusion appointment for May 24th. As harsh as the Oxalplatin was it was working so we are a little disappointed. But then, maybe this is a good thing, to attack with another chemical that the cancer has not had an opportunity to mutate against. The Doc mentioned a couple of other drugs and mentioned different side effects but it was all Greek to me!

2nd line

Most of the time they switch from Folfox to Folfiri so they replace the oxaliplatin to irinotecan. But maybe there are other drugs for your wife that will work better. 

I do understand your disappointment. You think the treatment works so you are afraid to change to another drug and you dont know what to expect then. But dont loose hope. 

SnapDragon2

I read a study about

I read a study about antocyanines fighting kRAS that led me to this study

www.intechopen.com/books/phytochemicals-source-of-antioxidants-and-role-in-disease-prevention/anthocyanins-smart-molecules-for-cancer-prevention