We journey on...

Hi everyone!  I know it has been a long time since I posted anything here, but to be honest, things have been going along pretty well, with nothing much to mention.

We are still taking treatments on a 3 week schedule at St. Joseph's Mercy in Ann Arbor Michigan.  Arnie does the infusion of Avastin and then is on a 14 day schedule of Xeloda, which is the oral medication, taken every morning and evening.  Then he has 7 days before the 3 weeks is up and the treatment regime begins again.

2 weeks ago, he had a bout with the flu, which caused us to miss attending our nephew's wedding.  We were really looking forward to going to this wedding, but I guess it just wasn't in the plans for us!  To say the least, we were extremely disappointed... ;((

Because of that flu, the doctor is having Arnie take a 3 week break from the Xeloda.  He got an infusion on the 12th and will go back for the next treatment January 2nd.  Scans are scheduled for January 17th.  Please pray that we have good results!

Thank you all for all your prayers and concerns for us!  Have a very Merry Christmas to each of you!

Lots to be thankful for!

I haven't written for a while (again) so I thought I should update you guys.  

We are doing very well - continuing the treatment of Avastin with the oral med, Xeloda on a 3 week treatment schedule.  We are still going to St. Joseph's Mercy in Ann Arbor Michigan for treatment.  The decreased travel time has really eliminated a great deal of the stress associated with all this.   I don't think we realized just how much of an affect all that travel along with one night away from home, every 3 weeks, was having on both of us.  Obviously, more on Arnie than me, but still significant. 

We feel completely confident about the treatment we are having at St. Joseph's Mercy.  We draw comparisons constantly between them and CTCA and we have asked a lot of questions and have observed how things are done there as compared with CTCA.  They are competent and willing to talk to us and answer our questions. 

We have prayed about this decision and both of us feel confident that God is with us and that this is where He would have us be at this time.  We are still in touch with CTCA and they are still willing to work with us.  Arnie is still taking the supplements that have been recommended by the Naturapath at CTCA and St. Joseph's doesn't seem to have a problem with that.  I feel that taking those supplements have played a major role in Arnie's ability to handle and tolerate his chemo treatments.  Dr. Reynolds has recognized that fact as well. 

There have been 2 drugs recently approved by the FDA for metastatic colorectal cancer, but we are remaining on the current treatment as long as the results show the cancer to be stable.  If at some point the cancer shows resistance to Avastin, then we will consider one of the new drugs.   Dr. Reynolds doesn't seem inclined to prescribe something else just because it is available, but wants to wait until there is a need from the patient.  We will continue to be closely monitored and treated.

Please continue to keep us in your prayers.  We so appreciate the thoughts and prayers of family and friends!  God has been so good to us and for that we are so thankful. 

Happy Thanksgiving! 

Different direction

I have been a bit negligent or maybe lazy about doing this blog entry... sorry!  Several of you have asked specifically about the information I am going to be telling you about.

We have always felt that God led us to CTCA for cancer treatment, and we still do feel that way.  We have had very good treatment there - both medically and emotionally.  They have been there for us and have provided what we feel is very good care.  Arnie has done very well and at this point, Dr. Neelam has suggested the possibility of investigating clinical trials.  There are new drugs always coming out and there is a lot of research going on.  Because Arnie is doing so well at this point (cancer is stable) it may be a good time to get involved in a clinical trial, but it has to be the RIGHT one.  If we can take advantage of a treatment that knocks the cancer completely out during a clinical trial, we are ahead because it takes the FDA a significant period of time to approve drugs and to have them available.

Arnie has been looking into what is available in our area, since we are not going to travel outside the country or any further than we have been traveling for treatment.  We found that IHA Hematology Oncology,  Cancer Care Center-St. Joseph's at Ann Arbor, Michigan does clinical trials and they treat patients there.  We have visited them and established ourselves as a patient.  Their patients are given preferred consideration when it comes to consideration for clinical trials.  We met with Dr. Chris Reynolds, who had all the records that CTCA had forwarded to them along with the copy of the latest PET scan which we had for him.  He reviewed Arnie's case with us and looked at the scan.  He seemed encouraging because he commented that the cancer was small and localized.

We talked about the trial that they are recruiting for right now and after gathering all the information and talking at great length about it, decided not to go with it, mainly because only 2/3 of the participants will be receiving the drug, while the other 1/3 will not and no one will know for at least 2 months, when scans are run, who is getting the drug and who is not.  We checked with Dr. Neelam who said she did not like that idea at this time.  She felt that waiting all that time without a treatment was not an acceptable chance to take.

Dr. Reynolds commented that he saw no reason to change treatments at this time, since the present one seems to have stabilized the cancer.  He told us that they could proceed with our present treatment of Xeloda and Avistan, which we have been receiving at CTCA. 

We will be taking at least the next 2 Avistan treatments in Ann Arbor, MI instead of traveling to Zion.

All of our team at CTCA have been agreeable to what we are doing and they want us to be sure to keep them in the loop.  The idea of traveling one hour as opposed to a 5 hour drive and a night's stay, is very appealing to us!

Arnie is doing well on this "mini break".  We have gotten some things done around the house that have been put off.

We feel that this is where we need to be right now.  Our prayers have been for God's leading and that we would know for sure where He want us to be.  We feel that taking the treatments right now in Ann Arbor is where we are to be.    Please keep us in your prayers for healing and also for us to be sensitive to His leading. 

Choices

It is Thursday morning... we are home from CTCA and again, the trip out there produced a completely different outcome that I had expected - it always seems to go that way.  Sometimes it is not so good, and other times it is good.  This time it was good.

The blood work showed the CEA has come down significantly.  The reading last time - 3 weeks ago - was 90 and this time it was 60.  There are a variety of reasons for that reading to go up and down but when you are a cancer patient, it always appears to indicate the activity of the cancer.  It has gone up and down before because of other inflammations that were present, like the colitis or any irritation that affects the mucous membranes of the body.  Dr. Neelam was very pleased that the reading had dropped so much.

Also the PET scan showed no spread of the cancer and basically it is still considered as "stable".  Cancer still there, but not really doing anything. 

We have been looking into the possibility of getting involved in a clinical trial and have investigated their availability.  There are a couple either being conducted now or are scheduled to begin within a month or so at IHA Hematology Oncology Cancer Care Center, St. Joseph Mercy, Ann Arbor, Michigan.  Arnie has been in touch with them and has learned that when it comes to the clinical trials, their patients are chosen first, then it is open to the public.  So, we have decided to go there - seeking a second opinion and becoming involved with one of their doctors as a patient. We have an appointment tomorrow.  They have already taken care of getting records from CTCA for us. 

Dr. Neelam and her team, which includes the Naturapath, Dietician, Mind/body person, Care Manager, have requested that we keep them in the loop and let them know what is going on with us.  They are still very interested and desirous of being involved in Arnie's cancer treatments.

Dr. Neelam told us of a brand new drug, Zaltrap, which has just been approved by the FDA about a week or so ago, that they have and it would be the next treatment she would  use for Arnie.  She said that if the possibility of a clinical trial does not happen within the next month that we should come back there and she would start him on that treatment regime. 

So we have choices - which is a good thing.  Please continue to keep us in your prayers, that God will lead us where He wants us to be and that He will be pleased with our decisions.  This journey has been, for the lack of a better word,  INTERESTING!  Again, we seem to always meet new people and have the opportunity to share with them where we are, or to just listen.  God always seems to put people in our paths just at the right time and in the right place!  That has happened to us so very often! 

I will try to keep you all posted as to our progress.  Would love to hear from any of you who would want to comment or send emails or call.  It always helps me to get those encouraging words! 

Hate that CEA!!!

Just quickly… getting a treatment right now.  The CEA is up again - however Arnie feels good.  The Oncologist is not sure why the CEA is up so she is ordering a PET scan for the next time we are here, which will be in 3 weeks.  

In the meantime, she wants us to continue getting all the information we can on clinical trials that are available for this cancer.  There have been a couple new drugs that just received FDA approval but they are not here yet. They are available at some other locations so we are to find out where we might go for these.  

Arnie has been searching on the Internet for trials and he has gotten some interesting information which he has questioned Dr. Neelam about.  After talking with her, she has given him some guidance regarding the kind of trials that he would fit into so he knows how to search for their availability.  

It seems like God has some other plans for us so we are trying to be available and to depend on Him for answers. 

Please keep us in your prayers as we continue on this journey.

Cancer is stable

It always seems that when we go to CTCA in Zion, Illinois, things happen in a different way than we expect.  When we get scans, I am always, in my worry-some way, expecting the worse.  This visit was no different... I was apprehensive and expecting to hear bad news. 

We had a CT scan Tuesday afternoon; got results Wednesday morning.  The scan showed that the cancer has not grown at all since the last scan 3 months ago.  It is still there, but Dr. Neelam is calling it stable right now.  The CEA has gone up about 2 points.  There are a lot of reasons for CEA to be elevated but the real evaluation of the cancer is from the scan.   Scans show the exact size and activity of the cancer, so scans provide the most accurate status of the cancer.

We talked at some length with Dr. Neelam about Arnie's particular cancer.  Her attitude seems to be that she has a handle on his disease but her concern is also for any side effects demonstrated from the chemo treatments.  She omitted one of the chemo drugs from his infusion this time, since it caused a reaction during the last 3 infusions.  These reactions could lead to anaphylactic shock which is something we really don't want to have to deal with. 

We talked about the possibility of looking into some clinical trials.  There is a lot of research going on which has resulted in a drug or 2 being very close to approval by the FDA. 

God continues to take care of us and we are thankful for that!  Please continue to keep us in your prayers -- it works!!

Setback

I have been putting off writing this.  I have to admit that I am having a hard time these past few days dealing with the news we got this time from CTCA.  The CEA was up a bit, which has caused us to feel a bit of a setback. Kind of disappointing because we hoped that reading would be down or stable.  Dr. Neelam thinks it may be because of the reaction he has had to one of the chemo drugs, or it could mean that the treatment is not having the positive effect and the cancer has become resistant to this treatment.  

We have a CT scan in 3 weeks, which will show where we are and what the cancer is doing.  Then we go on from there. 

Please keep us in your prayers.  I feel a bit discouraged at this point, but trying to keep the faith and trust in God.  Please pray that I would be a source of encouragement to Arnie even though we have experienced this disappointment.  We know that God has a plan for us and we have to keep our eyes on Him as we continue to travel this road.

Thank you for your care and concern and especially your prayers for us!

We choose to be encouraged!

We are in Infusion, 3rd floor, CTCA, Zion Illinois.    We drove out yesterday – beautiful weather.  It was very warm when we left home, but got cooler as we drove west.  It was 50 degrees here this morning, so I am glad we thought ahead enough to bring a jacket.  It always seems cooler here than at home!

Today's blood work showed the CEA down slightly which is a really good thing.  The last time he was on Avistan, the CEA started out high, went a bit higher, and then dropped after 2 treatments. We kind of expected that the CEA might even go up a bit so we are happy that it has leveled out at this point.   

Dr. Neelam talked to us about clinical study that is going on that she feels Arnie could take advantage of.  It is for a maintenance treatment that would be available for patients whose cancer has become stable. She is saying that we will see how his cancer responds to the treatment we are on now and then decide about the maintenance treatment.  She is very upbeat and encouraging. We have another treatment is 3 weeks, and then scans after that.

Today’s scripture from the daily Turning Point Devotional email is:

"Let not your heart be troubled; you believe in God, believe also in Me."
John 14:1

  The power of choice is an underutilized tool in the spiritual toolbox. Usually, where the will goes the emotions will follow. For instance, Jesus told His disciples, "Let not your heart be troubled" when they learned He would be leaving them. Where did Jesus place the responsibility to remain encouraged? Squarely on the disciples. It was their choice not to let their hearts be troubled.

 Too often we allow ourselves to become victims of circumstances as if we have no choice, no say in the matter. But according to Jesus, we can choose to be encouraged.

Make this an encouraging day in the Lord--by choice.

Joy is not an accident of temperament or an unpredictable providence; joy is a matter of choice.
J. I. Packer

As many times before, these words are very timely for us! 

There is power in prayer and it works!  Please keep us in your prayers and thank you so much for caring for us!

Back on Chemo

Our news wasn’t exactly what we expected.  We figured that we would probably have to go back on chemo, and that is the case.  The scans showed some increase in size of spots in the lungs, with others remaining the same in size.  There are also a few additional spots in the lungs which are showing on the CT but are too small to show on the PET.  There is a very small amount of fluid present outside the right lung.  

Dr. Neelam has put him back on the same chemo meds as he was on before the break, but has increased the dosages and the naturopath has recommended some additional supplements for prevention of C-diff and for building up the immune system.

  

The blood work numbers are all good, which she is very pleased with, although the CEA has gone up to 40.  There is no cancer showing anywhere else in the body, which is also a very good thing.  She seems to think that she will be able to get this under control again with the chemo meds she is using and with everything she has available for use in the future, if needed.  

We are feeling a setback here, but we have been talking and we still feel that God is in control and that we still have to take this situation one day at a time.  It would be so easy to be extremely discouraged. 

I feel somewhat disappointed, I will admit, but at the same time, I know that God is in control and that He is guiding our lives, he loves us, and has a plan for our lives.  Everything happens for a reason.

Arnie and I both saw this on today’s devotional from Turning Point by Dr. David Jeremiah…

Be strong and of good courage; do not be afraid, nor be dismayed, for the LORD your God is with you wherever you go.
Joshua 1:9

Please keep us in your prayers!

Break!!!

Here is a quick rundown of the latest... we are on a 6 week break from chemo!!  YAY! 

"Normalcy" (is that a word??) is good!! 

Our visit to CTCA this week was met with a bit of resistance from me because we have been enjoying a more normal kind of life these past several weeks and I didn't want to have that lifestyle interrupted.  Since the C-diff has been knocked out by an antibiotic and confirmed no cancer or C-diff present in the colon as a result of the biopsy taken during the most recent colonoscopy, we have been living a normal life, which sounds kind of unremarkable to some, but believe me, "normal" is a good thing!!  We have been going to church regularly again, have traveled to PA to visit family, Arnie is going to work every day, we have enjoyed going to the park and taking pictures of everything again, we have enjoyed walks, he is interested in gardening, washing the trucks and in working in his wood-working shop. 

Our visit to CTCA resulted in an additional break of 6 weeks, since  the CEA has dropped some and the blood work numbers showed normal.  The last scan results had showed very small nodules in the lungs which did not even show on the PET because they are so small.  It appears as though all the cancer has reached a stable level.  At the 6 week visit, we will have scans in addition to the blood work which will give us a good picture of where we are with the cancer. 

Please continue to keep us in your prayers.  God has been so good to us as we continue this journey.  God bless each of you and thank you for your love and concern for us.

Progress Report

I know... I know... I haven't written anything here for some time.   I have heard from several of you about that and I apologize.   I guess maybe you can conclude that ... "no news is good news."

I thought I would update you on the latest.  We have been taking a break from chemo because the last PET scan showed some activity in the colon.  Dr. Neelam thought it might be inflammation and she had us order a colonoscopy which had to be delayed because Arnie got a nice case of C-diff in the mean time, that needed to be dealt with.  We saw our family doctor and he prescribed the necessary drug for Arnie to take which he did and it got rid of the infection, after a 3 week period.

Last week, on Friday, we went for the colonoscopy and those results showed no evidence of cancer in the colon, which is really good news.  They took some tissue for biopsy, however, for further testing for cancer and for C-diff, which we should be getting results in another day or 2.  Dr. Shah did say that everything looked good, though so we are confident that all is good.

We will contact CTCA after we get those biopsy results to make arrangements for the more chemo treatments.

It has been really nice to live a "normal" life these past weeks.  Arnie feels good and looks good - people say that he doesn't look like a cancer patient, which he really doesn't!  God has been so good to us!

Please continue to keep us in your prayers and I will try to get our progress reports send out in a more timely manner in the future!  I will try!!

Another bump in the road

The trips we take to CTCA never EVER seem to turn out like we expect!  No matter how apprehensive I feel when we are having scans, the results are never as bad as I imagine they could be, nor are they quite as good as I would like for them to be.  This trip was no exception.

We are home - no treatment this time.  The scans showed the spots in the rib are still shrinking in size - still due to the radiation treatments.  The nodules in the lungs have increased ever so slightly, which was going to result in an increase in the amounts of the chemo drugs this time, if we had received a treatment.  The real unexpected piece of news was that there is some inflammation in the colon, where the original surgery was. The CEA has jumped up, which can happen for a variety of reasons, one being inflammation in the colon.  Dr. Neelam thinks this inflammation is due to one or more of the chemo drugs and since Arnie has had some significant gastric distress over the past several weeks, she feels there is a connection there. 

She had us schedule a colonoscopy to determine exactly what is going on.  Further treatment will depend on those results. 

I am not sure exactly how I feel about this.  I want to be strong and not allow Satan to back me into a corner and beat me up with fear and depression. 

My son emailed me this scripture which I find to be very comforting. This tells me that God will take care of us.

"Listen to me, O house of Jacob,
all the remnant of the house of Israel,
who have been borne by me from before your birth,
carried from the womb;
even to your old age I am he,
and to gray hairs I will carry you.
I have made, and I will bear;
I will carry and will save."(Isaiah 46:3-4 ESV)

Please continue to remember us in your prayers. 

The journey goes on...

Here we are again, in lovely Zion Illinois at Cancer Treatment Centers of America.  Seems like we were just here! 

Arnie's treatment is well underway and we have finished our lunch.  We saw the Physician's assistant this morning and she gave us blood test results from the blood draw done first thing this morning.  The numbers are good and the CEA has gone down a bit.  Our discussion with the "team" today concerned the cold that Arnie has had and the blood pressure problems which have come about since he has been on Avastin.  He is on 2 blood pressure meds but we discussed with the Naturapath the possibility of some additional supplements which may help.  She recommended 4 additional things to take, which includes blueberries, Cal-Mag Plus, additional Vitamin C and Coenzyme Q10.  We will add those items to our arsenal of "goodies"!!

This visit here has been informative for us.  They have explained things very well, like the effects of blood pressure on the body and what we can do about controlling it.  Using the re-builder has resulted in improvement in the neuropathy, which the physical therapist was happy to know.  We will continue to see him each time we come here for treatments as well as using the re-builder at home for hands and feet three times a day.  How our routine at home has changed over the past months!!

We will be getting scans the next time we are here -- apprehensive time!!  God has been so good to us to provide us with all the information and answers we need to go on with this journey.  It is so easy to feel defeated and depressed  in the midst of all we are facing.  I have to remind myself often to take things one day at a time.  I can't do this on my own!  I am so thankful that God provides for us every day.  He is there for us... and He wants us to bring all our cares and concerns to Him because He loves us so much.  

Thank you for letting me share this with you.  Please continue to remember us in your prayers!