FIGHT FOR MIKE

FIGHT FOR MIKE
FIGHT FOR MIKE

Sunday, April 5, 2015

BRINGING EVERYONE UP TO DATE ON WHERE MIKE STANDS IN HIS FIGHT

Sunday, April  5, 2015

Mike and I would like to wish everyone a Happy Easter.  Easter has a special meaning this year as Mike has come to know and accept the Lord as his Savior.   We started going to a local church the week before Thanksgiving and became official members in January.  Mike was also re-baptized in February. His faith and spirituality have added to his well being in fighting his cancer.

It has been awhile since I have written any updates on this blog.  I have had other things that needed tended to, so my posting got pushed to the bottom of my to do list.   I myself have been struggling with some "winter blues/depression" due to our long and cold winter as well as stress from my job, taking care of things here at home, and living with our life of Mike fighting his cancer.   I have felt that Mike's cancer is defining our existence again with so much emphasis being placed on the things that Mike is doing in his fight.  I will go into that in more detail further into this post.

Mike arrived for his first FOLFIRI chemo treatment on Monday, January 26th.  This drug made him sick even before he finished receiving it and leaving the cancer treatment center that day.  Mike went to his workplace and got things ready to go for his next day at work.   He got up the next morning, January 27th, and went to work as usual.  However, he only was able to tolerate working until around 10:00 that morning.  He had to come home because he felt sick and tired.   He did not experience being this sick and tired with the FOLFOX.   As Mike progressed through the rest of the week, he slowly felt better.    His anti-nausea medicine really did not do anything to help him.   Mike then had his 2nd chemo treatment on Monday, February 9th.  He again experienced the same sickness and tiredness as he did following the 1st treatment,   He ended up coming home from work mid-morning the next day.   It was very hard for me seeing Mike not feeling well and knowing that there was nothing I could do to make things any easier for him.  His employer (and great friends) have been really good to both Mike and I.   He said that he was not going to allow Mike to continue working the day of and the day following his treatments, especially due to Mike feeling so tired that he was having trouble staying awake while doing his job.  

Mike had scheduled a follow up appointment for his 3rd chemo treatment for February 23rd. However, at this point, Mike decided that he was no longer going to do any further chemo treatments so he decided to cancel that appointment.    I called the oncologist to see if we could come in and talk to the him because I wanted to keep an open relationship with him in case Mike needed him for further care.   They also wanted to have this documented in Mike's records so that if anything further was needed down the line and needed to be approved by his insurance, they would have information.  That appointment was scheduled for February 25th.  When the oncologist came in, he asked what Mike wanted from him..  Mike told him that he did not want to do any more of the chemo treatments because he wanted to try some things on his own. The oncologist stated he wished Mike would have done a total of 4 treatments and then had testing to see if the cancer was responding to this drug. He was not happy that Mike was once again deciding to take matters into his own hands as far as his cancer was concerned.

 We asked the oncologist about his surprise that Sloan Kettering had not wanted to do clinical trials on Mike because he was not symptomatic.   He stated that Sloan would not want to accept Mike into their program if he would not follow through with that program in it's entirety.  He stated that would throw off all of their results.  Mike told the oncologist that he was hoping to go to Germany in April.    Mike had some new things he wanted to try.

That leads me to the things Mike has changed in his fight.  His day is consumed with taking supplements, getting things prepared for his meals for the day, shopping for those items and supplements, doing coffee enemas, and doing some sort of heat therapy.  One such heat therapy is the infra red sauna he uses and the other is the BioMat which is something new he has started using.  

Mike ordered the Amethyst Richway Biomat.  The following is taken from their site: http://www.biomat.com

The core of the Richway BioMat technology is a combination of far infrared rays, negative ion effects and the conductive properties of amethyst channels. These three powerful health stimulators are combined in a single, easy-to-use product with remarkable healing properties. The amethyst BioMat delivers soothing, deep-penetrating heat while stimulating the regeneration of damaged cells in your body. It’s a safe and natural way to achieve optimal health now and maintain a stronger, more resilient body in the future. This highly effective therapy is now available to medical professionals and home consumers who want to improve health and well-being with products based on Nobel prize-winning scientific research pioneered by NASA and developed using pure, natural materials.
The following video will explain the purpose of the Bio-Mat.




Mike has been using this mat since approximately the beginning of March.  He uses it for an hour in the evening at 158 degrees.  He also uses  it at 109 degrees when during the night when he sleeps.  Mike's local alternative doctor was so impressed with the information about this BioMat that he ordered it for use in his clinic.

Mike has also switched to eating only raw vegetables such as cauliflower, broccoli, green beans, green peppers, as well as ingredients used in making salads.  He does not eat cooked vegetables because when they are cooked above 105 degrees, they lose all their beneficial nutrients.  He is allowed to eat fresh caught salmon or organic chicken (the size of a deck of cards) once a week.  He rarely eats any of these two items.  He is also juicing using swiss chard, collard greens, a green apple, ginger, romaine lettuce, squash, cucumbers, carrots, green peppers, cabbage, and a lemon.  He has given up carbohydrates, and dairy products.   He does do the Budwig procotol diet of Flaxseed oil and Quark/Cottage cheese.  

Quark and cottage cheese are rich in sulphurated proteins. When these proteins are mixed with fat, the fat becomes water soluble and no longer needs the liver’s help to be absorbed into the body’s cells. Dr. Budwig’s method saturates the body with omega 3 anti-inflammatory fatty acids, a process which oxidizes the cells and restores health at a cellular level.  (from Organic Lifestyle Magazine).

Mike had a new CEA blood test done on Monday, March 30th.   His CEA level is down to 255.4 from 626.3.   I was so excited and thrilled.   When I relayed the results to Mike, his expression was nonemotional.  His feeling on this is that we really do not know if the results are due to what Mike has been doing himself or if it is mainly from the two chemo sessions that he had done, but the last one chemo treatment was 7 weeks before this test.  I am hoping that his results are due to all the effort and discipline that Mike is putting into fighting this disease.  Mike had to reschedule his follow up doctor appointment with the oncologist, so he will not find out his response to this result until April 20th.  Mike feels that the oncologist will say that it is all due to the two chemo treatments.  We will have to wait and see how that turns out and what else he may have to say about Mike's decision to do no further chemo.

Mike has two other things he wants to add to his regiment of treatment.  I will go into detail in future blogs as they become available to him and he starts using them.  Everyone has to decide and do what is best for their personal fight against cancer.   What works for some, may not work for others,  Find out what the thing is for you can go with it.  Mike just knows that chemo is not a right fit for him.

Sunday, January 18, 2015

MIKE NOT FEELING WELL JANUARY 18, 2015

Sunday, January 18, 2015

Mike started experiencing chills and then sweats on Wednesday night.   Mike does run a lower temperature than most.    When I took his temperature when he went to bed, it was 98.7 so that was up for him.   He was also starting a cough and had a headache.  The next morning he just sat on the side of the bed which is unusual for him.  When I asked what was wrong, he stated he did not feel well.  But, of course, he went into work.   I informed his employer that he did not feel well so he could ask him how he felt.  In Mike's usual fashion, he told his employer that he was feeling better.  I tried to tell Mike to call his family doctor.  This was how his pneumonia started  prior to his very 1st chemo treatment.

As he headed into the weekend, his cough was becoming worse.  It must have bothered him enough in that he called our family doctor on his cell phone to let him know what he was experiencing and that he was to start chemo on the 26th.   A prescription for Biaxin was called in for Mike to start taking.   

Mike is taking all of his supplements and was able to get time in infra red sauna which should help with the immune system.   We have to get him pumped up before he would start any more chemo.

CEA LEVEL 01/13/2915

Friday, January 15, 2015


I was able to obtain Mike's CEA level which is 626.3.  Mike thought it would surely be into the 1000s or 2000s by this time.    We will have to wait until his follow up appointment as to what Dr, Wyshock says and what Mike decides to do at that time.

I will let you know when that time rolls around.

FOLLOW UP WITH 2ND OPINION RESULTS 01/13/15


Wednesday, January 13, 2015

After returning from Sloan Kettering Memorial Hospital, I called Mike's oncologist's office the day following Mike's appointment at Sloan to make them aware that he had had the 2nd opinion and to be watching for the findings to come through.  I did not want this to slip through the cracks and not hear anything regarding this.  They gave me an appointment date of January 26th.    However, Mike called their office the following Monday and obtained an appointment for today.

The doctor came in and asked how we made out.  I am not sure if he had any correspondence from Sloan yet or not.   Mike told the doctor that I had notes. He then asked me what we were told.  I went through the list of the options that Dr, Veach had given to Mike.   When Mike mentioned the KRAS testing, Dr. Wyshock said he thought he had written for any biopsy tissue that the hospital had be checked for this and it had been checked.  This revealed that Mike did not have the KRAS mutation negative gene. His was mutated so the Erbitux drug would not work for Mike.

Mike asked about having another CEA test to see where his level was being that he had not had any chemo treatment since August before he went to Germany for the 2nd time,  The doctor agreed to doing this.  The blood was drawn at this appointment.   A follow up appointment has been scheduled for 2 weeks which will be January 26th.   They did go ahead and also scheduled Mike to begin the Folfiri. This would be given every other week like he had his previous chemo infusions.

FOLLeucovorin Calcium (Folinic Acid)
FFluorouracil
IRIIrinotecan Hydrochloride

Chemotherapy is often given as a combination of drugs. Combinations usually work better than single drugs because different drugs kill cancer cells in different ways. A chemotherapy regimen consisting of leucovorin calcium (calcium folinate), 5-fluorouracil, and irinotecan is used in the treatment of advanced-stage and metastatic colorectal cancer.   This would be given along with Avastin which is a blood vessel strangulator.  It strangles the new blood vessels that the tumor makes and sends to spread the cancer.   Mike had this drug in his previous chemo treatments.

Dr, Wyshock stated this was the most aggressive treatment.  He said he would use this to try to shrink the tumors.  If it would not work, then they would try something else.    

He mentioned the drug Stivarga which would be used after all other options have been exhausted.


Stivarga (Regorafenib) which is approved to treat:

Colorectal cancer that has metastasized (spread to other parts of the body).  It is used in patients who have not gotten better with other treatments.

So now we wait to see where Mike's CEA level is at.   Mike wanted to leave his options open as he would like to try to return to Germany in April if we can come up with the funds to return there for immune building treatment.






SLOAN KETTERING MEMORIAL HOSPITAL APPOINTMENT FOR A 2ND OPINION

Wednesday, January 7, 2015

Well Mike and I made it safely into New York City with out any difficulties.   We left after work last night.   We arrived in the city around 9:30, found a parking garage located right under our hotel, checked into Doubletree  Hotel, and were both in bed by 10:00.   We thought we would venture around the city a little bit in the morning before Mike's appointment.  The room was very nice and the beds so comfortable.   The weather that night and the next day were predicted to be very cold,   I guess due to us both working all day, the three hour drive, the comfortable bed, warmth of the room, the room darkening curtains, and not being on a too busy street, we were able to have a good, sound sleep. Mike is one to not sleep in.  On the weekends he is up anywhere between 3:00 & 5:00 AM.   However,  he did not wake up until 8:50 AM.   His appointment was at 10:00 AM.    We rushed to get around and, therefore, were unable to site see before his appointment.

We walked the two blocks from the hotel to the hospital.   This outpatient center does not stand out as a regular hospital.   We were standing on the street trying to locate the address when I turned around to ask a gentleman for help and discover the hospital's logo on his jacket.  We were standing right in front of the entrance.   We went inside and took the elevator to the 5th floor where we were greeted by a very friendly receptionist.  She gave us paperwork to complete.  While I was completing the paperwork, They took Mike to get his temperature, blood pressure, height, and weight.  We were then taken to an examination room about an hour later.   Dr, Veach same into the room and stated he had reviewed Mike's records, but wanted to hear Mike's telling of his journey thus far.  He then did a brief exam and did some strength testing.  He told us he heard a drop in Mike's heart beat which he called atrial arthymia.   After that, he asked Mike - "what is it that you want from me". Mike told him that his oncologist suggested seeing an oncologist who specialized in the type of cancer that Mike has.

Here are the options that he gave to Mike:

1)  He could continue with the Folfox that he has already had  (two rounds).  He stated the pro for this treatment would be that Mike would know what to expect from it.  The con was that the tumors have already experienced this drug so the response to this "cocktail" of drugs goes down to a 30% chance of working.  This treatment would also have an accumulative toxicity.

2)  He could try Irinatecan (AKA Camptosa).  This drug is classified as a plant alkaloid.   The pro to this would be that the cancer has not experienced this drug.  He stated it would be the most aggressive with the best chance of working for him and that there was no dose limiting toxicity.   The con to this drug is that it can cause diarrhea.   This occurs in less than 30% of patients who receive it.  This drug is given by infusion over 90 minutes.

3) KRAS testing.  This is done using tissue from the liver biopsy.  It can tell you what to use.  I still do not quite understand this so I will explain it using information I obtained off the internet.
 
     This test detects specific mutations in the KRAS gene in the DNA of cancer cells & tissue.  The presence of mutations may indicate that certain drugs may not be effective in treatment the
cancer.

  With this testing, Dr. Veach suggested a drug, Erbitux, which has been approved for treatment of patients whose colorectal cancer has spread to other parts of the body,  Only patients whose tumors have a KRAS mutation negative gene (commonly known as "wild type" and whose tumors have a protein called Epidermal Growth Factor Receptor (EGFR) should receive this.  The con to this drug is that is causes skin problems such as an acne like rash, skin drying and cracking. The acne/rash would then have to be treated with steroids.

4)  Experimental treatment.

     They could take a new biopsy of the liver to test for mutations to see what the tumors need to grow.  They would then somehow stop giving the tumor what it needs.  They would look for molecular abnormalities.

     Immunotheraphy which is not a treatment of cancer itself,   This use the body's own immune system to help fight the cancer,  It stimulates the body's own  immune system to work harder to attack the cancer cells..  It "takes the breaks off the immune system and lets it loose on the cancer while shutting off immune support".  The immune system is reved up.    It can also attack the good cells and make antibodies against itself.  If this would happen, then they would stop the drug that is boosting the immune system and give the patient steroids.  This would have to be done at Sloan Kettering.

Since Mike is "asymptomatic", Dr. Veach stated he would not recommend any experimental treatment.

Dr. Veach then sent Mike up to the 7th floor to have an EKG to document what he heard when listening to his heart.  By this time it was 11:45.   The transporter told us that the EKG was scheduled for 1:00 but he would take us up there and have us check in. He said that maybe they could get him in earlier.  We checked in and they told us to have a seat.  They came right out for Mike and took him back for this testing.  Before I could send an email to my and Mike's coworkers, Mike was back with the print out in his hand to take back down to Dr, Veach.    The doctor said it show the "drop" and gave Mike the print out to bring home to have it to compare to any previous EKGs that Mike may have had done for prior surgeries.  He stated it was not really anything to be concerned about nor something for which he would need medication.  It was just something our family doctor could watch.

So we left Sloan Kettering with this information.   I knew Mike was anxious about getting out of New York City before there was any major traffic.  I asked him if he wanted to eat lunch there or drive out of the city and get something to eat along the way.  He decided to eat there.  We did not, however, take time to find a different or special place to eat in the city.   We saw a guy walking carrying a Subway bag so we asked him if there was one close by.  We went there for lunch and then headed back to the hotel to pick up our bags that we had put in storage.   We called ahead to the parking garage so they could get our car ready to be picked up.  We had the parking validated by the hotel and we started our journey home from 51st Street around 1:00 PM.

Mike concentrated on the driving while I kept an eye on our directions and obstacles up ahead in our lane.  We followed the GPS and headed out of New York City unscathed and without any problems. We encounterd a couple of snow squalls on Interstate 80 on the way home.  There have been some recent major accidents on this interstate due to snow squalls,  I told Mike that if it got bad, we were going to pull over and not try to continue in that.  Luckily we did not have to do that.  We drove straight to our dog groomer's house who had kept our 3 dogs while we were away and made it back home around 5:30 PM.

It was a quick trip in and out of New York City.  We did what we went there for and will bring that information back to Mike's oncologist and decide on how to proceed from here.


Tuesday, December 16, 2014

SLOAN KETTERING APPOINTMENT

Tuesday, December 16, 2014                      


Well we found out from the oncologist's office that Mike will not be able to take the oral chemo pill because his health insurance does not have prescription coverage.   They sent all of Mike's medical records to Sloan Kettering in New York City for review so an appointment could be scheduled.   Sloan Kettering called me and an appointment has been scheduled for Wednesday, January 7th.  

I had initially called Sloan to inquire about the Mike getting an appointment there, and they advised me that Mike cannot be under any treatment for him to be evaluated there.  From there, I asked the oncologist's office to schedule the appointment since they have most all of the records at their disposal. I will take along all the records that I have gathered since the very beginning.  We had to call to have slides from Mike's liver and lung biopsies sent as well.  Hopefully, since Mike will be seeing an oncologist who specializes in colorectal cancer, he will be aware of some other treatment options unknown to Mike's oncologist here who sees all types of cancer.

We have heard good things about Sloan Kettering and certain treatment options they may suggest might be able to be done here.  The one things that Mike is concerned about is the drive into New York City. He is planning on us leaving during the middle of the night to beat the traffic so we can make sure that we get there on time.  We were also advised that if we do not leave New York by mid-afternoon, we should wait and leave later to avoid the traffic from people leaving work.  Others have suggested we park in New Jersey and take the train into the city.  It will be a new experience for us but one that I know we can handle.   Mike has handled everything that has come at him thus far and with his determination, he will handle this too.

Wishing you all Happy Holidays and best wishes for a great New Year.  May your journey seeking treatment for your or your loved ones' cancer be positive!


Debbie & Mike Lord

Merry Chrisrmas
                           

Sunday, November 30, 2014

CEA TEST RESULTS NOVEMBER 2014

Wednesday, November 26, 2014

Mike had his meeting today with his oncologist.   The CEA which we were hoping would still be low has raised to 39.9 so that indicates that the cancer is coming back.   Mike was very disappointment with this result as he has been really regimented in his diet and the supplements he is taking as well as the weekly Vitamin C treatments.

I felt that this was our best visit with the oncologist.  He seemed much more open to other options of treatment and even suggested that Mike get another opinion from a colorectal oncologist.   He said that since he treats all different types of cancer, that seeing a more specialized oncologist that there may be other options and newer treatments for Mike to try.   He mentioned Hersey Medical Center right here in Pennsylvania, Sloan Kettering in New York City, and one more that we cannot remember.   I know a couple of people who have gone to Sloan Kettering for lunch cancer and have had wonderful results.

Mike opted to take the oral chemotherapy pill, (Capecitabine is a prodrug, that is enzymatically converted to 5-fluorouracil (5-FU) in the body.) The 5FU is one of the drugs that was in the "cocktail" of drugs that Mike received his chemo intraveneously.   The 2 possible side effects the doctor told Mike he could get would be diarrhea and Hand foot syndrome which is (reddening, swelling, numbness and skin sloughing or peeling) on palms of the hands and soles of the feet (and, occasionally, on the knees, elbows, and elsewhere) that can occur in patients with cancer. However, he thought that these would be unlikely.   We are hoping that is the case,  He will take 2 tablets in the morning and 2 tablets in the afternoon every day for 2 weeks.  He will then go off the tablets for 1 week.   He will repeat this cycle 3 times.   At that time, another CEA level will be done.

We have decided that we also want to pursue seeing a colorectal oncologist at Sloan Kettering as well to find out what they think of Mike's condition and what other options they may have for him.
Mike is still continuing with a variety of his supplements and his strict no carb/sugar diet and his infra red sauna treatments.     We will see how things go with this next step in his treatment.

I will repost when I have more information about scheduling an appointment at Sloan Kettering and with the results of Mike taking the oral chemo tablets.