UCLA

I entered UCLA's hospital Wednesday and I'm about half done with the chemotherapy part - 3 more days. Then a day of rest before I get my stem cells back. So far I'm gaining weight, but they assure me that will change. I am told that the roughest part will be a day or two after the accumulated chemo - about next Wednesday or Thursday. My body seems to be reacting as my doctors here expect, confirming their expertise to me. I really am in good hands - theirs & Gods. Thanks for your continued support in what God is doing in my life.

Spots ??

Last week I went in for a scan-assisted biopsy to find out what the spots in my lungs were. Before they got started, they did a preliminary scan to see which lung they wanted to use. The spots had disappeared and/or become so tiny that they could not do the biopsy. Therefore my UCLA appointment is back on for Wednesday (Dec. 9th). I should be in the hospital for 3 weeks after that and then 2 more weeks near there for recovery. Once again, your prayers are very much desired and appreciated.

Missouri

We recently spent about 10 days in Missouri with our daughter Kirsten, son-in-law Tony, and 3 grandkids - Caleb, Alison, and Luke. Four or five of those days we were babysitting. Luke (only 1 year old) ran us ragged. What great kids and a great time!
This week I was scheduled to get a new portacath and check in to UCLA. They have discovered some small areas of concern in my lungs and want to check them out further before proceding. Dr. Paquette thinks there is no problem, but wants to make certain before proceding. I will probably get another PET/CT scan in about 1 month and then decide whether I am ready or not.

UCLA

The approval has come in from the insurance company and I will spend 2 days this week at UCLA. On Wednesday, I will go in to sign paperwork and get a dose of chemo while I'm there. I don't know how tough this one will be, but it is not the major one they will give me later. Then on Thursday, I will go back to start nupogen. This is an injection that I will be giving myself for 4 or 5 consecutive days to stimulate my bone marrow to release stem cells into my bloodstream. Then on the 21st, they are planning to start harvesting those cells by taking my blood and running it through a cyclotron and then back into my body. The cyclotron removes the stem cells for later use. Approximately late October, I will come back for a 3 week stay. They will give me a massive dose of chemotherapy and then use my own cells to help me recover. After 3 weeks in the hospital, I will spend another 2 weeks in the area with Anita by my side 24/7. Then 2-3 months at home to recover before I can plan on doing anything physical.

Misc. Update

No - I don't have a new hairstyle! This is just a cap that looks like a visor with a wild hairdo - thanks to my friend Randy Howard. I am still bald, but getting a little bit of fuzz. On my last post (about a month ago) I told you about the UCLA possibility. A couple weeks went by with no word, then I saw my G.P. (Dr. Long). He checked for me and got the ball rolling. I have had a bunch of tests (heart, lungs, blood, X-ray) and Monday we will have an interview at UCLA. Then we ask for insurance. Another potential problem is that right in the middle of this, my insurance will change. We are praying that this will cause no problems. Thanks again for your prayers and encouragement.

Chemo - Day 6

OK - Doc said to get rid of the last strands of hair. It will grow in looking better that way. I am officially through with chemo (at least for a while). I am in remission; but with mantle cell, they expect a relapse. The UCLA doctor (Paquette) wants me to come in for a month so he can harvest good bone marrow cells from my blood. Then he would give me a severe dose of chemotherapy and reinsert my own cells to help my body deal with that. It's referred to as autologous bone marrow transfusion and should postpone any future relapse. If my insurance approves, we will give it a go. We are just waiting for a time line on that. Again your prayers are very much appreciated.

Chemo - Day 5

Today was my 5th day of Chemo - everything went smoothly. You may be able to tell that nearly all my hair is gone, but otherwise I feel great. Last Thursday I had a bone marrow biopsy and today Dr. Lindgren had the results. According to the report: "no evidence of of involvement by mantle cell lymphoma." This was indeed good news and we are thrilled. In spite of this, I am scheduled this Friday for a consultation with a UCLA Doctor who specializes in bone marrow transplants. I will be taking all my reports to see if this might be a worthwhile option for me. Please continue to pray - I definitely feel God's hand on this process.

Powers Lake

I just returned from a trip of 3300 miles to ND and back. I was privileged to have grown up in the great little town of Powers Lake - Boy Scouts, band, athletics, great education, and people with a good work ethic and character everyone wants for their neighbors. Homes and cars are left unlocked with no one worried about theft or vandalism. It still feels like the 50s to go back and visit. I greatly enjoyed visiting with over half of my class (1964) and many others.

Good News

After having the PET-CT scan yesterday, I was able to see Dr. Lindgren today regarding the results. He was very encouraging. He compared the scan to infrared helping a soldier to tell whether some shadow in the distance might be an enemy. The infrared would show a hot spot for life, rather than just the shadow. My scan shows NO hot spots at this time. Most of the lymph nodes are greatly reduced in size and he expressed that my body was reacting in a very positive manner to the treatment. He also mentioned that my blood counts were great and gave his blessing on my trip to ND. Again, thanks for your prayers!

Chemo - Day 4

After an extra week for my platelets to catch up, I had my 4th chemotherapy today. It went very well and I feel great.

Now I need to apologize. A couple of you said that you had made comments, but I never saw them. I now realize that in "Blogger" where I create the post, there is a button for me to moderate comments before they get posted. I love the comments and will look forward to more.

During the next couple weeks, they want to "restage" me. This means bone marrow test, blood tests, and PET Scan. They will try to get the PET done before I leave for about an 8 or 9 day trip to North Dakota. My home town (Powers Lake) is celebrating its centennial and I want to visit with a bunch of old buddies who will be there.

Postponement

I am sure many of you were expecting Chemo - Day 4. Because of low platelet count, Dr. Lindgren postponed chemo for 1 week. He said that it is normal for the body to need a little extra time to catch up this way. You may also wonder about this picture. If you look closely to the right side, you should see a semicircular area of red. I played golf yesterday and this is the area in the back of the cap above the strap. After a round of golf, Anita and I went square dancing - a very full day.

Chemo - Day 3

This was taken this morning. You may not be able to see the amount of hair loss, but it is very significant. I am going to post the previous pictures on Day 1 and Day 2. By the way, the Hawaiian shirts allow for easier access to my portacath so that is my uniform. I am now 50% through with chemotherapy. I feel great even though I am missing some hair. I have some days where energy is an issue, but overall I really do feel good. I square dance every Monday and actually played golf about a week ago (went well). Thanks for all your prayers on my behalf.

Chemo - Day 2

My second session of chemotherapy went great also - except for some pain with the insertion of the needle through my skin and into the portacath. I feel good - no nausea and quite a bit of energy. A few days ago, I had the pleasure of walking Newport Beach Country Club watching an ex-student from El Modena (Ed McGlasson) attempt to make it to the US Open. He shot an even par, but played better than that. I think he would have moved on with just one less shot. That was the most exercise I had in several months. Other than a few issues with cramps in my legs later that day, I felt good. It's definitely time for me to work on getting back in shape. I have approval for that, so I am starting tomorrow. Again thanks for all your prayers on my behalf.

Chemo - Day 1

Well, I have survived 1 day of chemotherapy. I feel great! That may be due to the anti-nausea pills that would have cost $3600 for 18 pills, but due to insurance I get them for $90. The first part of the treatment was Rituxan (rituximab). They start this one very slowly, watching for any possible reaction to it. Midway I did have a slightly scratchy throat so they slowed it down for a while. The nurse thought it was basically my body reacting to the positive action of B-cell breakdown. This slowdown caused my session to last about 8 hours of IV and 10 hours in the doctor's office for day 1. I go in for a shot (to boost my immune system) tomorrow and see Dr. Lindgren next Tuesday. Your prayers were felt today - keep praying for His best.

Treatment

Talking with Dr. Lindgren yesterday, I found out that he had lunch on Friday with a noted Mantle Cell oncologist from Houston. They spent an hour discussing my case and Dr. Lindgren was convinced that a third alternative might be the best for me. This is a modified R-CHOP. I don't know what all the letters stand for - it can be found online, but what it means for me is one day of treatment (in his office) and 13 days off. We then repeat this 14 day cycle 6 times. After the fourth one, I go through all the tests for staging again (including bone marrow biopsy). The day after treatment, I receive a shot which is designed to boost my immune system. I will also take a steroid pill and several pills to help alleviate nausea. It will take a few days to get all the prescriptions settled with the insurance company and take another blood test for "bench-mark" purposes. Therefore we are scheduling next Tuesday (5/5) as the start date for chemotherapy.

STAGE IV

It is common for b-cell lymphomas to be diagnosed at stage IV, which includes bone marrow involvement. Please note that successful treatment is often possible for stage IV disease and bone marrow involvement is reversible. The above statement was copied from a website describing a little about stage IV lymphoma. I found out today that my bone marrow biopsy confirmed that I do have stage IV. Dr. Lindgren went over several approved ways of dealing with this. We concluded that only 2 of these options make any sense for me. One of them entails me being hospitalized for nearly a month at a time. The other one has me on an IV for 3 or 4 days and then off for about 21 days. Those 3 or 4 days may be in the hospital or possibly out-patient. Either way we would do about 4 cycles of treatment and then go through the tests again to see how the lymphoma reacted. He wants my decision on Monday (4/27) and then we begin!

Another Surgery

Yesterday (Monday the 13th) was my 3rd surgery in about 1 month. The purpose of this one was two-fold. First was the laparoscopic gall bladder removal. For that, 4 fairly small holes were cut into my abdomen. One of these was a camera, a couple of them were surgical instruments and the last was some sort of tube for the removal of the gall bladder.

The second part of the surgery was to insert what is known as a "port-a-cath", which I previously called a shunt. The picture above gives some idea of what one looks like. It is a semi-permanent opening into my right jugular vein, completely under the skin, providing fairly easy access to the vein for drawing blood or in my case for inserting chemotherapy.

Within a few days, I hope to hear from my oncologist to schedule a meeting and discuss my upcoming treatment.

Family Time

I wanted to add a personal item to this blog. Our 2 kids brought our 5 grandchildren to visit this last week. What a blessing!

Good Bye Gall Bladder

The gall bladder scan showed a forming of gall stones. Although I have never experienced any problems, they tend to block the bile from going to the digestive tract. If I were not getting ready for treatment, this would not be an issue. During my treatment, my blood will have less white cells to help me fight anything. Therefore the doctors have decided that the best course of action for me is a preemptive removal of the gall bladder. The only negative is a small period of adjustment for my digestive tract. I am scheduled for surgery on Monday afternoon. Dr. Lindgren is asking the surgeon (Dr. Hamamji) to insert a shunt for future chemotherapy use. After healing from surgery, I will meet with Dr. Lindgren to get a better idea of his recommendation for my treatment and what to expect.

The Week of Tests

Monday was the PET and several other scans. The results are in, but I have not been in contact with my oncologist concerning them yet. The radiologist said that he saw a potential problem with my gall bladder so he recommended a scan of that area.

I saw my general practioner (GP) on Tuesday for my stress test (treadmill) and it showed my heart was in good condition. The GP said that the scans seem to indicate that my lymphoma might be localized in just my lower abdomen which is a good thing, but he wants me to see the oncologist first.

Friday I was able to get the bone marrow biopsy and also the scan of my gall bladder. That ended my week of testing. Hopefully we can get some results early next week.

Late Friday night, Kirsten & Tony arrived with our 3 grandkids - Caleb, Alison, and Luke. We are looking forward to a lot of fun with them this week. Eric may also bring our other 2 grandkids - Kathleen and Michelle to spend some time with us in a day or two. It should be a great week!

The Bone Marrow Biopsy

Yesterday, Dr. Lindgren tried to get a sample of my bone marrow. When he had trouble getting the needle to pierce the bone, he concluded that he needed to have me come back and do that under anesthesia. Before that can happen, he needed more blood, a chest x-ray, and an EKG. When he ran the EKG, it printed across the top: sinus rhythm - QRS(T) contour abnormality - consider inferior myocardial damage. I'm not sure exactly what that means, but I am now scheduled for a treadmill "stress test" next Tuesday. I may then need to see a cardiologist before I can get the bone marrow biopsy. I still have the PET (Positron Emission Tomography) scan and several other scans on Monday. Dr. Lindgren is trying to get me on the schedule for his Thursday meeting with other oncologists to present them with as much of my case as possible to get their input.

The Oncologist

Today we met our oncologist, Dr. Tiberio Lindgren. He is very energetic and knowledgable. He is also passionate about his pursuit of the best treatment for lymphoma - including mantle cell. After spending more than an hour going over lymphoma in general and mantle cell in specific, he then went over what we knew about my case. Our first course of action is to determine what stage I am in. Several expensive blood tests were ordered (my only cost was the loss of blood) and a bone marrow biopsy which will be done next week (3/26). I am sure greatful for medical insurance! Although we were a little disappointed in not finding out more about our course of action, we were very encouraged by meeting and getting to know Dr. Lindgren.

The "News"

Last Tuesday (3/10/2009), we got the news that a biopsy done on 3/5 did show cancer. To be specific it showed "mantle cell lymphoma." The doctor who did the biopsy did not even know the significance of the term. It turns out to be a fairly rare form of non-Hodgkins lymphoma. Non-Hodgkins lymphoma is very treatable. However, because of the rare form, we are not sure what it means. We are in good spirits, knowing God is on the throne. Tomorrow, we see the oncologist for the first time and get his opinion. His name is Dr. Tiberio Lindgren and I've already heard good things about him.