Journal

Journal entry by Bob Stromberg

A couple people expressed concern about my comment regarding 4 months without treatment.  Wednesday was a rough day for me and all of my family.  My intention was to express the fear and anxiety that we felt that evening.  My biggest concern was that I would need to go through some tumor reduction process which would have added months to my treatment.  But Thursday was a great relief.  I am very confident that removing the tumor will greatly increase my chances of long term survival and the 2 months without chemo will not be a problem.  The growth tends to exponential, not linear, so 2 months is not half the risk but just a small fraction of the risk.  It has now been 3.5 weeks and I can tell by the numbness in my feet and fatigue that there is still plenty of chemo left in my system.  My family and I are again very hopeful.

Journal entry by Bob Stromberg

This has been a rough week but it ended well.  

We met with the radiologist on Tuesday.  She said the tumor is too big to treat with stereotactic radiation.  She could treat with another type of radiation that is also very focused but likely would do damage to the liver.  She said this should be a last choice.

We met with my oncologist on Wednesday.  Blood-work looked good but he recommended to stop all chemo treatments because it was not effective on the tumor.  We discussed the immunotherapy.  One thing our radiologist said was that the Keytruda is only proven to be effective if one marker (PD-L is present. The DNA analysis said there was zero percent present.  When we asked about this, the oncologist said that is true but was one of few immunotherapies that could be used in conjunction with the chemo treatment.  This very much upset me as the stated purpose was to start during chemo so that it would be actively working when chemo ended and used as on-going maintenance.  So not only did we stop chemo, we also stopped the immunotherapy.  The specialist in Lexington previously said that 4 months without any treatment would possibly kill me.  It has been three weeks since my last treatment and if the tumor is too big to remove, it could easily be months to reduce size, schedule and remove tumor and then recovery.

We met with the surgeon today. He reviewed all my records and the CT scans and talked to my oncologist before coming in to see me.  When he came in, he said removing the tumor will be no problem and there is a 90% chance he can do laparoscopically which reduces the recovery time.  That was a great relief to Joan and me.  He informed us of all the risk (infection, bleeding, death, etc.) but sounded very confident that all would go very well.  The surgery is scheduled for Tuesday, July 16.  Initial hospital stay will be 4-6 days.  I will be on restricted duty for about 3 weeks.  He said the liver is very greedy and will suck all the nutrients out of the blood stream during recovery so I will have very little energy for the first few weeks.

I contacted the specialist in Lexington and let them know the plan and asked if I could get an appointment before the surgery to discuss post-operative treatment plan.  I do not plan to go back to my current oncologist.

Journal entry by Bob Stromberg

I had a CAT scan on Wednesday, June 19. Results were good and bad. The good news is that the cancer still appears to be limited to just the Liver. The bad news is that the tumor continues to grow. It is currently about 7 cm x 4 cm. My doctor has been very reluctant to remove the tumor for several reasons. First, I would have to stop chemo until after recovery (up to 2 months). The specialist in Lexington also expressed the same concern because the type of cancer is very aggressive. Since it spread through the lymph-node system, it could potentially be anywhere in my body. Second, the tumor is being used as a marker to determine if the chemo is effective. Theoretically, if the tumor continues to grow, the treatment is not effective and likewise, if it begins to die and shrink, it is effective. Third, the chemo does affect my immune system so I would be at greater risk while my immune system is compromised. However, since there is no sign of the cancer spreading to any other part of my body, my doctor thinks the chemo is being successful and containing the cancer but not killing the tumor. Also, the tumor is at the point now, that if they don't do something, it will be too large to remove later. He has recommended several procedures and set up appointments for me to meet with other doctors to discuss options. On Tuesday, I meet with my Radiologist. She said it is too big to do the Stereotactic Radiation Therapy treatment but could do a more general but focused radiation treatment. On Thursday, I meet with a surgeon to discuss two options. First is completely remove the tumor from my liver. The liver is regenerative and would grow back. But it may already be too big to remove. The second option is to a very localized treatment where they insert a catheter and implant radioactive crystals on the tumor. As the crystals dissolve, the tumor is saturated in radiation but surrounding area is only slightly effected. I am leaning toward surgically removing the tumor only because it has been so resilient that I fear to wait weeks or months for results only to find out it is still there and have not had any systemic treatment to prevent spreading. But I will wait to see what each doctor says. We are also forwarding the test results to the specialist in Lexington to get his recommendation.

Journal entry by Bob Stromberg

Right after my last post, I started losing my hair (two weeks after my first treatment).  It was falling out in clumps so I had Maggie buzz all the hair off.  Now I look like I have cancer.  The first two chemo treatments were supposed to make me lose my hair.  The first one, it thinned a lot.  The second one it actually grew back a little.  This third one finally got me.  Hopefully it will get the cancer too since the first two did not.

I had my second treatment on June 3.  Merck did approve the free immunotherapy (Keytruda) so in addition to the chemo, I received my first immunotherapy treatment.  Other than the loss of hair, the neuropathy and tiring more quickly, I am still doing very well.  Still trying to swim once per week.  I am scheduled to have another CAT scan this Wednesday, June 19.  It usually takes 3-5 days to get the results.  No change would be good since it was a couple weeks between previous scan and start of new treatment.  My guess is the tumor continued to grow during that time so no change means it shrunk back to previous size.

Journal entry by Bob Stromberg

My next treatment was moved to June 3.  The neuropathy  seems to be under control for now.  It still bothers me but is not debilitating.  I did get another swim the other day and it was not great, but much better than the last one.  My doctor had prescribed starting an immunotherapy in conjunction with the chemo drugs but the insurance company did not approve it.  My doctor said that the manufacturer (Merck) has a program that will sometimes provide the drugs at no cost.  I filled out all the paperwork and found out this past week that it was approved.  The benefits of the immunotherapy is that uses your own immune system to fight the cancer.  But typically it takes about 3 -6 months to start to work.  So hopefully, if this chemo treatment is effective at stopping the spread and even reducing the size of the tumor, the immunotherapy will start to kick in and control any further spreading and possibly kill all the cancer cells.

Journal entry by Bob Stromberg

Today is my 35th wedding anniversary.

As Joan mentioned, I started a new chemo treatment this past Monday.  I felt fine at first but Wednesday onward was rough.  Some of it was the chemo, some of it may have been my fault.  After the chemo on Monday, they apply a patch that injects an immune boost after 27 hours (ie - the next day, Tuesday around 6 PM).  They said some people have severe reactions so don't want you driving during the injection which lasts 45 minutes.  Again, it appeared that I tolerated the chemo and immune booster very well.  But the chemo treatment has a much higher concentration of steroids so I did not sleep well the next couple of nights.

I am leading a team of engineers on a project that launched on Wednesday so I went into work early and only got 2.5 hours of sleep.  Then I worked 12 hours mostly walking from one station to another all day.  Then I had two activities that evening.  According to my phone, I walked 8 miles that day and was on my feet for 17 hours.  One of the side effects of the chemo is neuropathy (destruction of nerve endings).  My feet were hurting so bad I left work early the next day and was in pain for several days.  I did not see any evidence that being on your feet all day makes the neuropathy worse, but I don't think I helped it any.

Joan did some research and found that a supplement called L-Glucomine that protects and restores nerve ending damage due to chemo.  I started taking it Friday and am feeling much better.  I still have a constant tingling pain but it is much more bearable.  I am able to walk around and even got a swim in today (my first in over a month).  The swim was by far my slowest in 15+ years, but it was still good to do it.  I am hopeful that the supplement will make future treatments much more tolerable.

My next treatment should be June 5 but is currently scheduled for June 12.  I think it was a mistake.  The doctor was out of office last week so will get clarified this week.

Journal entry by Joan Stromberg

Bob had his first treatment yesterday. It was a long one--we were at the infusion center for over 7 hours, but he tolerated it well. The immunotherapy drug (keytruda) was denied by the insurance company, but the pharmaceutical company has a program where you can get it for free, so we filled out the forms and hopefully we will be able to get it the next treatment. Thanks, everyone for your prayers!

Journal entry by Bob Stromberg

I am doing well.  But unfortunately, so is the cancer.  The initial treatment of chemo, radiation, chemo appears to have knocked out the adeno-carcinogen.  But, as previously mentioned, the neuro endocrine tumor (net) spread to my liver.  I started on the CPT-11 treatment two months ago which was supposed to take care of the net.  However, the latest CT scan showed the tumor in my liver had grown about 4x.  I met with the specialist in Lexington, KY last Friday.  He said that the cancer should be treated like a lung cancer vs. colon or liver.  He called and talked to my doctor and they agreed on a plan that my doctor will administer.  This chemo treatment is a two prong treatment plus a immunotherapy.  The chemo is combination of carboplatin and taxol.  The immunotherapy is keytruda.  I start the new treatment on Monday (assuming insurance approves).  This treatment is one day every three weeks.  After 2 months, they will do another CT scan.  Since the type of cancer that I have is so rare, there is not a standard protocol and not much data to say what the success rate will be.

Journal entry by Bob Stromberg

I just completed my second cycle of CPT-11 where each cycle it is infused once a week for three weeks and then a week off. I am scheduled for a CT scan next week (Monday, April 29). They will look to see if the tumor has changed.  No change planned to my treatment regardless of results.  After two more cycles, they will repeat the CT scan and re-evaluate treatment plan. My body has continued to tolerate the side effects of stomach cramping, diarrhea, and fatigue.  Hopefully the tumor is not tolerating the treatment as well. The only major effect is no sleep the night after treatment due to the steroids administered with the treatment.  I only feel the fatigue when I exercise.  I tire much more quickly and have to take frequent rests. But in general, I am functioning normally (working, eating, sleeping).

In the interim, we have contacted the specialist at UK Markley Cancer Center for a second opinion.  This is the same specialist I saw before the initial treatment of chemo - radiation - chemo.  Joan spent a significant amount of time researching this new tumor and believes there are better options than the CPT-11.  May 3 was the earliest we were able to get an appointment. This actually works out OK.  I will have a new CT scan and don't have a treatment that week.

Journal entry by Joan Stromberg

This is Joan. I offered to write Bob's journal update because he has been really busy lately and is short on time.

We did meet with the surgeon and scheduled to have the ileostomy reversed and it was tentatively scheduled for April 8. Meanwhile, Bob had a follow-up CT scan. Unfortunately, the scan showed some lesions on the liver. The oncologists hoped it was just some fatty deposits and immediately scheduled a PET scan and biopsy.

The PET scan was done February 27th and the biopsy was done February 28th. There were two lesions, one on the right lobe and one on the left lobe. They one on the right lobe was easily accessible and showed more active on the PET scan.

Bob received a call from the oncologist with the pathology report while he was out of town on business on Monday, March 4. The lesion was positive for neuroendicrine cancer. This is the more aggressive and rarer form of the two cancers that were originally diagnosed in the colorectum. It was pretty hard for all of us to hear that after months of treatment, the cancer had actually spread. We were hoping for better news. Because the cancer has spread to other parts of the body, he has been re-staged to Stage IV colon cancer.

The oncologist suggested another cancer drug, CPT-11, to be infused once a week for three weeks and then a week off. The major side effects are stomach cramping, diarrhea, and fatigue. The oncologist wants to do a scan after the two cycles to see if the tumor has shrunk. He is hoping to then use some radiation to eliminate it. His first treatment with the CPT-11 is next Wednesday, March 13. As long as he tolerates the drug well and his blood counts don't go too low, he should finish the treatments by the end of April and they will schedule another scan after that. It should be a productive Lent!

So, the ileostomy take-down surgery will have to be postponed and we continue our rounds of chemo at the hospital. We are still hopeful for a full recovery, mostly because of the prayer warriors we have storming heaven on our behalf. Thank you all very much! 

Journal entry by Joan Stromberg

Hey Everyone! 

First of all, thank you all for your prayers for Bob and for our family. It has been quite a roller coaster ride the last two weeks. Bob had his first colonoscopy June 26 and was found to have a large tumor in his rectum. Biopsy showed that the tumor was cancerous. Further tests showed that the tumor was most likely stage one or two, so that if it was removed, chemo, at this point, is not indicated. 

Bob goes into surgery at 12:30 tomorrow, July 17th, which is also our youngest son, Tommy's 10th birthday and the 8th anniversary of my mother's death. He will be at Baptist East and Dr. Allen is his surgeon. She is very highly regarded in this field, so we are very hopeful of a good outcome.

One of the reasons this came as such a surprise is that Bob has no risk factors for cancer...colon or otherwise. There is no family history, we eat well, grow many of our own vegetables, eat homecooked meals from locally raised meat. He exercises regularly, is not at all overweight, and is moderate in all ways. 

Still, the ways of the Lord are not our ways and his plans are not our plans. We are all very grateful that the cancer was caught in time to hopefully cure through surgery, as painful and uncomfortable it may be. 

Please continue to keep us in your prayers. I can feel the grace they have brought us every moment of every day. They lift our spirits and draw us together as family in the Body of Christ. 

I have to say a word of absolute gratitude to the children God has blessed us with. From Joe and Elise who have put their moving plans on hold to little Tommy who was unfazed that his birthday celebration would have to wait. The generous actions of Mary who made dinners for the week to Maggie and Theresa filling in the gaps of running kids around and making sure they get where they need to be. All the girls, including Elizabeth, now in Atlanta, stepping up to fulfill my obligations with Little Flowers Camps, is also such a blessing and relief.

Surgery is scheduled at 12:30 tomorrow, July 17 at Baptist East. It is expected to last 5 hours. It will be done in three phases: removal of the tumor and surrounding section, a resection, an a temporary ileostomy until the resection heals. After 6 weeks or so, the ileostomy will be reversed in another surgery. 

Thank you again for your prayers! God bless you all.
Joan
Bob’s Story

Site created on July 16, 2018

Bob was diagnosed with colorectal cancer June 27, 2018.  Surgery to remove the tumor is July 17, 2018 at Baptist Hospital in Louisville. Although the tumor is quite large, the surgeon is hopeful that the surgery is all that will be needed to rid the cancer from Bob's body, since there is no indication that it has spread further. Please keep us in your prayers. God bless you all!

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