DennisRohde.com

The final days of a great man ...

2008-07-05T16:30:00.002-05:00

From June 8th, 2008 until Monday June 16th, Dad was in St. Johns hospital.

During this week they ran several tests to further identify what was causing his difficulty breathing ... to identify if he had pneumonia or bronchitis. During this time, he was on multiple antibiotics along with 4L of oxygen. He just couldn't seem to catch a decent breath. Mid week his doctor decided to put him on strong pain medication which caused him to be rather disoriented. Following this, his doctor ordered a brain MRI which identified three small lesions in his brain.

While we were told that they were not causing him any of the current side effects, we could not identify how long the tumors were there, considering he hadn't had a brain MRI since he was diagnosed in 2005. He was receiving his treatments of interferon and interleukin while in the hospital and seemed to tolerate them well. A radiation Oncologist was brought in to discuss radiation treatments to the brain. She said that he would be getting radiation to the full head since they weren't sure if any additional tumors existed which may not have been seen in the scan. His treatment plan consisted of five days of radiation, for three straight weeks and then re-evaluation at that time.

On Monday June 16th, Dad wanted to go home, so that is what we did. He went home with a radiation and injection schedule. The week of June 16th through June 22nd, he was handling his radiation and injections very well. In the midst of the schedules, Mom had knee surgery on Friday, June 20, which led friends and family pulling together to help get Dad to his radiation treatments and injections everyday.

Monday, June 23 we had an appointment with Dr. Needles (Dad's oncologist) and found out that Dad's blood count and platelet levels were astronomically low (i.e. - 19, while the normal range is from 150 - 400). So we wheeled right downstairs and had blood drawn for transfusion for the following day. He was also told that they would have to stop the injections until his platelets rose to normal levels.

Tuesday, June 24 he was taken to the lab area of the cancer center where they infused two units of blood and a unit of platelets. While he was sitting all day he developed extreme pain in his right foot. Dr. Needles came down to take a look at his foot and said that we need to keep an eye on it. At this time he had bruising on his left leg (we believe from rubbing up against the wheelchair legs in combination with his low platelets).

Wednesday, June 25 he went to his normal radiation appointment, and came home to celebrate Grandma's birthday, by having dinner with his kids, son & daughter-in-law, and all five grandchildren. The boys went fishing and had a great turnout ... just about 15 fish in under two hours. Not too shabby.

The girls went to the nearby park and played for awhile. Everyone reconvened at Grandma and Grandpa's house, leaving shortly thereafter, but not before saying our good-byes, with many hugs and kisses.

Thursday, June 26 Dad woke up around 7am and went to the recliner with his Oxygen. He dozed off for a few hours, which was common as of late. Around 9am, Mom attempted to wake him up from his nap, but was unable to arouse him and called 911. He was taken back to St. Johns ER where they needed to put a breathing tube in (intubate) since he was unable to maintain his own airway. He was taken for a CT Scan of his brain to identify whether the problem was due to a stroke or a brain bleed. That test came back negative at that point in time.

After a short time spent waiting for a bed in the ICU, we left the ER. The ICU doctors evaluated Dad and came to the conclusion that he most likely had a small stroke. The difficulty in this situation is the fact that they were unable to give him blood thinners due to the brain tumors and the chance of them bleeding. This, coupled with the continuation of the right foot issue, led the assumptions down the path that one of his tumors was throwing clots to his leg (and possibly brain) and it was cutting off the blood flow to those areas.

That evening one of the ICU doctors discussed the option of taking him to surgery to address the foot, or leaving it as it was. The risks of surgery were that if they gave dad blood thinners to dissolve the clot it would have been an increased risk for the brain tumors to bleed. So we decided as a family to leave the foot alone and deal with it when the time came.

Friday, June 27 was the day that the family discussed and came to the conclusion, based on what each of us would do, but more importantly based on what Dad wanted and had discussed in the past, that we should take Dad off the respirator if it comes down to being the only method by which we can suspend his life. The discussion came from the doctors stating that their was little to no hope that he would come out of unconsciousness.

Sad and apprehensive, we knew what we had to do... We all went home and showered and cleaned up and met back at the hospital that afternoon and decided to take Dad off of the respirator. We disconnected him around 3:30pm. We all had our quiet time with him and were able to say what we wanted him to hear. Family and friends came in and out of his room that Friday night telling jokes and old stories. We sat all night reminiscing about the past. It was an evening he would have appreciated, under better circumstances or not.

He finally passed at 4:40am on Saturday June 28. Everyone in the room knew, once we saw the clock, that the time was right to leave. Thanks Mr. J. for remembering when to pick him up ... Enjoy the game,

So his legacy will live on in his wife, kids and grandkids, it also lives on in you. Thank you for taking the time to read this, to understand a bit more of what Dad went through in his final days, and be sure to share your memories, jokes, and well wishes on DennisRohde.com

And finally, thank you to Dad ... for who you were, who you've helped us become, and who you've made us want to be.

~Always and forever~

In Hospital on Sunday, June 8, 2008

2008-06-14T15:43:00.001-05:00

Yesterday, I went to the emergency room of St. John's Hospital (affiliated with the Cancer Center I go to for treatment). I decided to go to the hospital, due to extreme difficulty breathing that developed over the past few days. This morning I saw Dr. Needles and he said the tests indicate new "infiltrates" to both lungs. This could be Pneumonia or advancement of the cancer, or some other problem. We will have more tests over the next couple days to figure it out and begin appropriate treatments.

I will periodically get online to check emails.

Thanks in advance for your prayers, thoughts, and support.

D. J.

A poem from a friend ....

2008-06-14T15:39:00.002-05:00

... in response to the latest progress report. Sincerely appreciated.

Fluid is gone,
liver is clear
Nodes and nodules are stable
You'll get back on the course, where you belong
As soon as you are able

Isabelle is perfect, your family is strong
Your friends are here for you
The Windy City awaits, experts standing by
Let's see what they can do

Listen, my friend, kick this thing
New treatments are around the corner
Approach them with hope
And you'll be teeing off
While cancer is the goner

May 27, 2008

2008-06-14T15:37:00.001-05:00

Once again I was hoping for all good news, expecting some minor problems, and fearing bad news. This is my weekly routine. Hope, Expectations, and Fear. I try my best to balance them, as we all do.

The CT Scan was taken last Thursday, 5/22 (same day that Isabelle Rohde was born). The results were reviewed on Tuesday (5/27) with Dr. Needles. Before he started his review, I mentioned that I'm sure the Pleural Effusions (fluid in the lining of the lung) had increased, as I have recently had constant pain in my left ribs, and an increasingly difficulty with shortness of breath and being able to take a deep breath. Seemed like the logical conclusion.

Well, guess what.... My Pleural Effusions have completely "resolved"! Gone! Nothing left but trace amounts of fluid! I had hoped that would be the case, but didn't expect it. Furthermore, that means I was completely wrong on my self-diagnosis! In addition to that surprise, I continue to have a number of small nodules (very small early tumors) in both lungs. This is not the cause of the breathing problems, and they have been stable since the last report in March. The same type of tumors reported in my liver last fall are no longer apparent. Good news, and bad news. Much like my expectations. On the other hand, the radiologist identified a possible tiny tumor in one of my left ribs, and he identified a cracked rib on the right side. I have no pain on the right side, and the left side pain is much higher in my rib cage than the reported 'nodule'. This is confusing and frustrating. Another bit of good news is that the lymph nodes on my abdomen are all stable, and there are no new problems there.

So I have these current issues - Left rib cage pain, shortness of breath, frequent nausea, and extreme fatigue. (As you can imagine, these put a big crimp in my golfing.) There is no explanation for these problems unless it is a reaction to the current cancer drug (Torisel). One of the know side effects of Torisel is Interstitial Lung Disease. In an attempt to identify what role the Torisel has in my breathing problem, we are going to back off the drug for a week or two. If it shows that my breathing improves, I will probably move on to the next treatment. That will be interferon-alpha, interleuken-2, and Avastin. This program has some harsh side effects, but have had some success as well. There are also other alternatives. One option is to go to the Univ. of Chicago and have a complete analysis done by the experts there. That may be happening sooner than later.

Your notes and your support fill me with encouragement and keep me focused on the "Hope" side of the spectrum. Thank you for your prayers, thoughts, and words of hope !!

D. J.

Side note - Interesting upcoming treatments!

2008-06-14T15:35:00.003-05:00

http://www.foresight.org/nanodot/?p=2713 (Thanks to Bill Wiltsch)

http://www.cancercompass.com/cancer-news/1,14037,00.htm?c=1004:5:1:2

This new drug is being tested in India and Russia. It will be a LONG time before it will get approved in the US. The interesting thing is that there continues to be new Kidney Cancer fighting drugs all the time. All these drugs do is suspend the expansion of the cancer. I don't think any of them will cure it. I think it will take 10-15 years before they find a true cure.

March 17, 2008

2008-06-14T15:34:00.000-05:00

As usual, this progress report has some good news and some not-so-good news.

Last Friday I had another CT Scan and a full body bone scan to see if the cancer has spread into any bones.

The CT Scan showed that the 4cm density that was recently discovered in my right lung has decreased to 3cm. I can no longer feel pain in my right lung that I had a couple weeks ago. Additionally, my lung capacity has improved from 2200ml four weeks ago, to 2800ml now. It should be at 3400ml, but I am happy that it is heading in the right direction.

The recent Bone Scan shows no definitive metastasis in any of my bones, although they identified an area of 'suspicion'... It is suspiciously close to the spot where they did the recent needle biopsy of my lung, so maybe they saw some small scars from the biopsy, so I'm not too worried about that one.

On the other hand, the CT scan indicates some minor growth of the several lymph nodes and an increased number of "nodules" that could become tumors. It is vague, however, it indicates an instability, and that is a clue to Dr. Needles that the Chemo treatment is no longer working. So it is time to move to another treatment. This morning we stopped the Chemo and I started on a fairly new drug called "Torisel'. It has a number of side effects, but it is not as toxic, expensive, or restrictive as the Chemo treatments I have been on since last August. We really had high hopes that the Chemo would have a positive result (reducing the cancer), but all it did was stabilize the disease for awhile (and make me sick.) We have the same high hopes for Torisel. if it doesn't work, we will again be looking at Interferon or Interlueken treatments options.

Even if we just stabilize for a while, we can see there are new Renal Cell Carcinoma treatments on the horizon, so we have not run out of options yet. I'm convinced that the cure is out there.... we just haven't tried it yet!

In the mean time, thank you for your prayers, thoughts, and support.

D. J.

February Update

2008-06-14T15:32:00.001-05:00

Great news...

The needle Biopsy of my right lung came back negative for cancer. The "mass like pleural based density" is probably pneumonia. I expect to go back to the chemotherapy that I had been taking to continue attacking the remaining cancer.

I am meeting with Dr. Needles next Monday so we will get the full plan then.

Thanks for your support and prayers.

D. J.

February 11, 2008

2008-06-14T15:30:00.003-05:00

Two months has passed since the last CT scan. Time flies when you are having fun, doesn't it?

Here's the latest CT Scan results:
This CT and radiology analysis was produced on Friday, 2/8, and it brought something new to the table. The radiologist discovered a 4cm "mass like pleural based density" in the upper right lung lobe. He also noted a minor increase in the pleural fluid. This indicate that the cancer is progressing. To be certain, we are performing a 'Needle Biopsy" later this week to determine the nature of the mass. It might be from an infection, or it might be a kidney cancer tumor. The biopsy will be definitive. If I cough or sneeze, my right lung is very painful (like pneumonia). It is interesting to note that Dr. Needles had an X-ray done two weeks ago, and the lungs looked clear at that time, so this is a very new development (which leads me to believe that it is an infection, rather than a tumor). Of course, my glass is always half full.

On the positive side, no other changes in any of my chest or abdominal lymph nodes were detected. If this turns out to be progression of the kidney cancer, we probably will move on to a stronger treatment that is based on Interleukin-2 (IL-2) and Avastin. IL-2 is a natural part of our immune system, a protein which activates parts of our immune system. IL-2 does not kill tumor cells directly like classical chemotherapy. Instead, IL-2 activates and stimulates the growth of immune cells, most importantly T-Cells, which are capable of destroying cancer cells directly. IL-2 is a rigorous course of treatment but is the only systemic treatment that has produced lasting long term remissions in some of the renal cell carcinoma patients that do respond.

Although the therapy rarely causes serious permanent damage, the side effects sound miserable. I'm not looking forward to this treatment, but if it is required, I can only look forward to do it and to get it done (git'r done!)

What ever the results are from the biopsy, I'm ready for it.

Thanks again for your prayers and support. It is of great help to me, and I truly appreciate it.

D. J.

"We Have Kidney Cancer"

2008-06-14T15:26:00.000-05:00

I just got a new book from the Kidney Cancer Association. I read it and found it to be a very compilation of the state of the art on Kidney Cancer. It also offers a lot of good thoughts on coping and managing the disease that I thought you might find of value. (See attached file: We%20Have%20Kidney%20Cancer.pdf)

Let me know if anything is of interest or question for you.

Thanks for your ever present support.

D. J.

X-mas Update - December 10, 2007

2008-06-14T15:25:00.002-05:00

Greetings!

Well, on Monday (12/10/07), I got the results of my CT Scan taken last week. Kidney Cancer is a strange beast. The only way they can confirm the status of this cancer is by taking a CT (CAT) scan and looking for tumors or swollen lymph nodes. A Radiologist has to review the CT Scan and determine the size and shape of any suspected cancer sites. Sometimes the radiologists are very detailed, measuring each site (in Millimeters or Centimeters). Usually, they are lazy (per my oncologist!) and just report on changes from the last CT scan. I think it is an inexact science, and a bit of an art.

Last report ( on 09/20/07), the scan showed that I had reduction in the lymph nodes in my abdominal lining, but a new lymph node increase in my chest. This time, the CT scan showed absolutely no change in anything in the past two months. My oncologist is very please with this report. Of course, I was hoping to hear him say there was more reduction. (I have the optimist perspective, and he has the pessimist perspective, naturally.)

All in all, I consider it a good report. During this cycle, the pharmacy was late in delivering my pill based chemo, so I had a lower dose of the Chemo drug Xeloda for 3-4 days. My side effects were not quite as severe as the previous round. Also, due to recent increases in my blood pressure, I was not able to take one of the IV based Chemo drugs on time (Avastin), so no reduction is okay, and no increase is very good news. I will have justified higher expectations on the next scan (in late January), as I hope to be able to take a full dose of the pill based Chemo, and a full course of the Avastin, since I have my BP in check with some new meds.

I recently read that the two year survival rate for metastatic Kidney Cancer is 18%. I appear to be beating the odds, and I fully expect to beat the heck out them!

Thank you for your prayers and support. It is of great help to me, and I truly appreciate it. Merry Christmas !

D. J.

First Primary Progress Report - September 24, 2007

2008-06-14T15:22:00.003-05:00

As you may know, I have just completed three cycles of Chemotherapy with a combination of drugs that has shown some promise in fighting Renal Cell Carcinoma. The decision to pursue this aggressive treatment came after evidence of "Pleural Effusions", which is fluid building in the lining of my left lung, and a noticeable increase in the size of some lymph nodes. My oncologist viewed this as "progression" of the cancer. We treated the Pleural Effusions with surgery, but the oncologist felt it would continue without the chemotherapy.

So after the first nine week course of a "cocktail" of Chemo drugs (Xeloda, Gemzar, and Avastin, if you like to Google such stuff), we had a CT Scan last week and received the results today. As with any goals we have in life, it is natural to hope for complete positive results and pray that we do not have a failure of the approach we take. Naturally, I have good news and some 'other' news as we have mixed results to report.

The good news: The lymph nodes in the abdominal lining that we have been watching for almost two years have shown a good reduction in size. Last report showed the largest at 4.4 cm is now at 2.5 cm, a reduction of 56%. No increases in any other abdominal lymph nodes and no change in the small tumor that remains on my right adrenal gland. My left kidney is in very good condition with no tumor on the left adrenal gland (where there used to be a tumor). Also, the left lung lining is nearly free of fluid.

The not so good news: Newly identified enlarged lymph nodes were identified in the chest CT. This may have been there when I had the fluid build-up, however it might have been obscured by the fluid. In June of 2006, I had increases in several of these lymph nodes, so this is not necessarily considered to be a dramatic progression of the cancer. It is something we will watch closely.

Bottom line: Dr. Needles views this as a generally good report that indicates progress in fighting the cancer. His concern about the noted increases is not significant enough to change the course of treatment, so we are going to continue this treatment approach for another nine week cycle.

All in all it was a good report. I can't begin to tell you how much I appreciate your support as I go through this.

I am confident that the continued treatment and the continued support of my family and friends will result in continued positive results.

D. J.

2008-06-14T15:19:00.000-05:00

Good news and better news.....

Turns out that BCBS-NY and Medco will cover the considerable cost of protocol, so I won't be joining the Univ of Chicago trials. We will, however, be following the exact same protocol. This will start on Monday morning.

For two weeks I take 1600mg of Xeloda daily, then once per week for these two weeks I go in to the oncologist office to get an IV that contains the Gemzar, and an injection of the Avastin.

Then I get two weeks off all the drugs. I expect to have a CT Scan during each cycle. This will continue (I presume) until the cancer is gone (no tumors or Lymph Node evidence) or there is some indication of progression. If we see progression, we will move to the Torisel. He also feels we have other alternatives.

I've been getting some excellent info on these drugs from a site that Scott Hamilton created: http://www.chemocare.com/

Dr. Needles is convinced that we will see positive results from this. That certainly helps my attitude (as does the prayers and support from my wonderful family and friends).

On the "better news" front, I no longer seem to have any pleural effusions! I've made three attempts to drain fluids per the standard procedure in the past 12 days, and I've collected less than a tablespoon each time.

Thank you all for your help and encouragement !!!

D. J.

2008-06-14T15:18:00.000-05:00

fyi - I scanned in the scan results (ha ha). (See attached file: CT Scan Assessment 06-01-2007.doc)

This shows that they found fluid (Pleural Effusions) around the base of my left lung. After my explanation of recent events (Diverticulitis), Dr. Needles agreed that it is like to be an after effect, but we're going to do some further testing to confirm that it isn't cancer related.

DJ

2008-06-14T15:16:00.002-05:00

Here's the analysis I recently did to compare the CT scans to the Sutent cycle. I think there is some correlation to the timing of the scans. It isn't 100% conclusive, but it is interesting. (See attached file: CTScan_Sutent_Cycle_v2.xls)

Seems that if the scan is at the end of the cycle, the report is much better! Based on this, I'm predicting an improvement in the state of the cancer on the next report. My next scan is at the end of March.