June 11, 2008

Dear brethren,
Keith Clayton here...

My last medical update (which I erroneously dated as June 9th...I looked at the wrong month on my calendar when I dated that update) needs some updating.

I indeed met with my chemo oncologist yesterday afternoon. Later, we also met with the doctor who is assigned to take care of the emotional issues I mentioned (depression, anxiety, sleep,  etc.).

When I asked for a two week delay in the pulsing of another cycle of chemotherapy, my doctor suggested that we just skip it altogether! He said I had received, already, over 60% of the total chemotherapy that was planned for me anyway. It would do no harm to skip one cycle, he said. We have another MRI scheduled for July 7th. We’ll see our doctor the following day. It is then that we will find out what good has been accomplished thus far, and we will discuss where to go and how to proceed from that point.

I also asked about alternate dosing of the chemo once the cycles resume. He said he could do it differently: 7 days on chemo...7 days off chemo...7 days on chemo...7 days off chemo. That would make up one 28 day cycle. My current cycle was 28 days, with all the chemo given in just 5 days, followed by 23 days off. It is in the “off” days that the worst side effects come out, because of being walloped in just 5 days. So, the new regimen, if we decide to go that way, will be the same total dose as the 5 day  regimen, but, spread out over 14 dosing days in the 28 day cycle.I went six straight weeks, taking daily radiation and daily chemo therapy (at 160 mg of Temodar). I had side effects. Yet those side effects were tolerable.

July 8th, my next chemo doctor appointment (the day after my next MRI) will be decision time as to how to proceed, what will be the course of future treatment. We will be concerned with both “quality” and “quantity,” but, the future treatments being given will reflect a greater priority being place upon quality of life. This is important to me for multiple reasons, not the least of which is that this will afford me the best opportunity to continue my work for the Lord better, and with fewer limitations place on my by onerous side effects of the treatment regimen.

It looks like the MRI machine and I will be frequent companions for the foreseeable future, as part of my treatment regimen, guiding the doctor as to what the tumor is doing. Their aim is “no growth.” They’ll take “shrinkage” if it he can get it (hence, the usefulness of the MRIs to tell the doctor what’s happening and what might be possible for him to prescribe in the treatment of the tumor). Yet, I’ve been told that the realistic goal is to keep it from growing, and that doctors are happy to get that much, and consider it successful. I’m no big fan of an MRI, but, I must endure it in order to be treated into the future. I think we are talking about as long as I live, quarterly (or maybe less frequently with consistently good results) MRIs.

Concerning the depression and anxiety, I think I have turned the corner, somewhat. I’m not yet nearly where I want to be in these matters, but, my doctor says this takes time to do it right. Yet, she is confident that we can work through this and get me on the right regimen (drug combination), and keep me there for protection from relapse due to future chemotherapy, or due to tumor activity.

With thanksgiving for all my brethren in Christ, for your prayers, love, care, and concern,
-- KC
 

 

 

June 9, 2008

Keith Clayton here...

It appears that the chemotherapy has been more rugged on me than what my chemo oncologist portrayed it would be. The radiation side effect residual was thought to be the main culprit of the debilitating fatigue I previously wrote about. But, in retrospect, the double dose pulsing chemotherapy of May 19-23 has some guilt too.

Though the fatigue and exhaustion have somewhat subsided, they have been replaced be equally devastating side effects: depression, anxiety. I have been referred to another doctor who is to keep close tabs on managing these side effects. This new doctor is “out of network” and will be seeing us regularly until these side effect are under control, and maybe for a time afterward to keep them at bay.

I am supposed to begin cycle two of pulsing chemotherapy on June 16th. I am not going to begin that cycle at that time. I am going to delay it for a couple of weeks. We’ll see what condition I am in at that point and decide whether to delay some more, or go ahead with the second of the six planned cycles of pulsing chemotherapy. I need the break. I’ve been battling cancer very hard and nonstop, since my brain surgery of January 19th.  

I spoke with a personal friend, an oncologist in another state, about the idea of me having my local chemo oncologist treat me for “quality” over “quantity.” I have decided that there needs to be a balance and that quality of life gets the nod, for me, when a choice has to be made between “quality” vs “quantity.” On Tuesday, June 10th, my local chemo oncologist and myself will have that discussion, and I’ll see what ideas he has for me, regarding a treatment plan that has quality getting the priority over quantity.

Thinking back...I spent a couple weeks in the hospital from brain surgery. I spent six straight weeks taking daily radiation & chemotherapy. Now I’m in the pulsing chemo phase, for six cycles of: 5 days on the drug, followed by 23 days of off the drug. This is my 28 day cycle.

Don’t be misled. The five days in which I take the drug (Temodar) are not when the worst of the side effects come to bear. The first couple of days, I have no side effects and it is as though I didn’t take any chemo on those days. The side effects begin to surface on day 3 of the cycle. The side effects intensify and shift around AFTER the first five days of the cycle, after the chemo drug has been ingested for the first five days. Day 21 of the cycle is when the doctor says the blood count will be the lowest.  But, side effects are a moving target and come with strength of affliction, even on the days in which I take no Temodar.

My local chemo doctor originally told me that Temodar was the least offensive of all chemo and that he thought it would be well tolerated, and that some folks carry on a regular work schedule while on the drug. Thus, I am quite surprised at what has happened to me and the strength of it. It comes and goes, but stays for long periods too. I’ve not needed to have someone else preach in my place yet, and have been able to do some other activities of my work, through it all.

Warm regards,
-- KC
 

 

May 29th, 2008

Dear brethren at Wallingford,
Keith here...

I am working to be able to continue my work in the gospel even through the side effects of brain cancer surgery, radiation & chemotherapy. I’ve done “okay” thus far in managing to work through the side effects. And, until recently, the side effects were somewhat manageable, and some days there wasn’t much for side effects that would stop me, or even slow me down very much.

Over the past couple of weeks, as you know, some different and strong side effects have surfaced, to say the least: fatigue & exhaustion. This isn’t the normal fatigue and exhaustion that everyone gets at one time or another.

I’ll do my best to fight this side effect; but, I want to forewarn you that this time I have a different side effect than I’ve ever dealt with in all of the brain cancer treatment. In fact, post surgery, when I underwent daily chemotherapy and radiation for six straight weeks was not nearly as bad as the current side effect of the cancer treatment. It is now thought by my personal physician that the problem is brought on by the doubled dose of the cyclical chemo therapy that I had May 19th through 23rd. The effects always lag the chemotherapy, and they deepen for 2 to 3 weeks after the chemo therapy. Thus even now I’m getting worse.

The steroid treatment I was on helped, minimally, regarding the fatigue and exhaustion. But, the steroid brought on its own side effects that were very troubling, mood swings and bad thoughts. Thus, I’ve been weaned off the steroid medicine. I’ve been given another med by my personal physician which is supposed to help with my mind and the confusion of mind. But, there is not much my doctor thinks can be done for the fatigue and exhaustion except to take some reasonable measures and wait it out.

My doctor does think that I am in the “winter” my treatment, and that waiting it out will bring spring time (after 5 more cycles of chemotherapy).

I may very well need more help from the other men than I’ve needed up till now.

Today and the next several days are not expected to be better; but, I’ll do the best I can.

Your brother & friend,
-- KC
 

 

 

May 24th, 2008

Keith Clayton here...

After a few phone calls to my two oncologists’ offices (radiation & chemo), and one email I sent to all three doctors (my surgeon, my two oncologists) I received a phone call today from my radiation oncologist.

He thinks the likely culprit for the fatigue and exhaustion is indeed, at least partly, some continuing edema in the brain from the daily radiation treatments I took for 6 straight weeks (which ended on April 9th). The new pulsing dosing of the chemotherapy coincided with the strength of the fatigue.

My radiation oncologist has asked me to drop one medicine that my personal physician prescribed to help with the fatigue, and to resume a short schedule of steriods to see if they will help. If he is right about the brain swelling being the cause of the fatigue (and I think he is), then some relief should be on the way over the next few days. And, we are to phone him in a few days to give him some input, and he will decide what to do from there.

I’m hoping the steriods do their intended relief of this side effect.

I know that the new chemo regimen is harder on me than the old one (being at twice the dosage strength). I experience much more nausea than previously. But, I’m thankful to be functioning anyway. I’m glad I’m on this dosage in a pulsing format, instead of for 6 straight weeks, as was my prior chemo regimen. I started the pulsing schedule last Monday and took the last dose in this first cycle yesterday. I now have 23 days off until I begin with the next 5 days on the chemo drug (Temodar). I am scheduled to do this for 6 cycles, presuming the drug is doing its intended damage to the remaining brain tumor/s. Bi-monthly MRIs will be the confirmation of the efficacy of the treatment regimen mapped out by the original three doctors: my neurosurgeon, radiation oncologist, chemo oncologist.

Best regards,
-- KC
 

 

May 13th, 2008

Keith Clayton here...

Lynn and I just got back home from another check up with my radiation oncologist! You might be thinking...I thought you finished up with radiation on April 9th. I did. But, radiation keeps up its work and its side effects for a long time. In fact, I’m to see my radiation oncologist again in six months. The following medical update is a summary of what I learned from my radiation oncologist today...

The side effects of the radiation treatments are still with me to one degree or another. My doctor expects them to with me “semi-permanently.” He has also said that some of the side effects may get worse before they get better.

Moreover, the efficacy of the radiation (or the chemotherapy) in assaulting the remaining right temporal lobe brain tumor is unknown at this time. It is known that the remaining tumor is larger than it was after surgery to excise the other golf-ball sized tumor. The effectiveness of the combination, simultaneous, chemotherapy and radiation treatments will not be known for some months from now. A close watch will be kept on the remaining tumor, through bi-monthy MRIs. IF the upcoming pulsing chemotherapy regimen is effective, then we will know it. If the Temodar (the chemo drug to be used) is not effective, we will know that, too, and appropriate changes can be made in the fight against the brain cancer. The baseline MRI, from which future MRI results will be compared, was taken on May 2nd. It was that particular MRI that showed some enlargement of the remaining tumor. Again, it is unknown as to whether the tumor has grown or is just inflamed from all the radiation with which it was assaulted.

And, there is just one tumor left, and there was always just one tumor. It is considered “one” and not “two” because they are connected by a small “isthmus,” as it was explained today by my radiation oncologist. My surgeon has originally called it “two satellite tumors,” overlooking the tiny isthmus type of connection.” Both my chemo oncologist and radiation oncologist, looking at the MRI results, have said that it is one tumor. This clears up a semantically induced difference between “one” and “two” tumors. I am accepting that it is just “one” tumor because it is now, and has always been, connected by a small isthmus.

Here are the nuisance side effects with which I am dealing, from the radiation:

 

• Salivary gland damage—I am working with my dentist on the problems caused by the constant “dry mouth.” I’m also engaged in a fairly exhaustive daily maintenance routine to perhaps curtail some of the gum and teeth problems that go along with dry mouth. Two teeth are being restored because of dry mouth induced caries.

• Ear canal & hearing nerve damage—I still have significant swelling of the ear canal, especially of the right ear, but, also in the left ear.

• Fickle sense of taste & smell—this is indeed a problem and my nose was affected adversely, and thus also my taste buds as well. The tip of my nose, on the inside, was somewhat misshapen by the radiation treatments.

• Fine muscle control is lacking, but, not entirely. This is seen when I try to write in cursive style. I can print better than I do cursive; but, it can be seen in my printing too. The safety razor can be a little shaky, also, if I try to direct it too finely. This side effect could be due to either radiation alone, or to surgery and radiation together. It seems that whatever the surgery did for side effects, the radiation keeps the side effect up and “enhances” it. This makes sense because radiation is also called “radio surgery.” And this radiation waves assaulted all the areas that the surgeon attacked, and more!

• Short term memory (and associated things: multi-tasking, ignoring distractions, remembering short term things, etc.): This is a triple cause side effect. This side effect comes from the surgery (my surgeon forewarned me), from the radio-surgery, and even from chemotherapy.  I was told today by my radiation oncologist that some of the aspects of short term memory impairment would worsen in the months ahead, and then get better. He was speaking of the part played by the radiation in this side effect. Though I felt my short term memory to be recovering somewhat, I know I’m not back to where I was pre-surgery. And, multi-tasking is very difficult. I take lots of notes now days. I also preach a little differently—if I lose my place on my sermon outline, I’ve set up my PowerPoint slides to stand alone, and I can use just the PowerPoint slides for my sermon delivery.

• Pseudogout—my radiation oncologist thinks that this problem with my right knee is not due to radiation. He is probably right. It might be just a coincidence that I now have this condition. Or, it could be (my thinking here) it just picked an opportune time to invade my right knee because of my generally weakened condition, brought about by surgery, six straight weeks of daily chemotherapy and radiation.

• I have other side effects with which I am dealing, that are not related to the radiation. I am now off all steroids and there are some effects with which I contend from having had so much steroid medication, off and on, since surgery on January 19th. We are still experimenting with the best way to deal with those side effects, with some success recently.
   

On the whole, my radiation oncologist said today, “considering all that you’ve been through, you are looking pretty good.” So, I tell folks, whenever they ask, “I’m in pretty good shape, for the shape I’m in.”

The main doctor in charge of my care right now will by the chemotherapy oncologist. The radiation oncologist still wants me to check in at some frequency because he expects more to happen regarding the doses of radiation he directed through my brain...and collateral damage, too, by the radiation.

We are struggling with our insurance company, Anthem BC/BS, regarding what they will and won’t pay for, regarding the chemo drugs. We hope for a favorable resolution to the coverage dispute with them.

Your brother & fellow servant of the King,
-- KC
PO Box 1164
Cheshire CT 06410