Journal

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 Bob Stromberg

I have one more chemo treatment (tomorrow).  As usual, it have the infusion (~2 hours) and then wear a slow infusion pump for two days.  They will remove that Wednesday.  Then they begin monitoring my condition.  I have a PET scan on Feb. 19.  As far as success, there is no way to tell.  All they can do is monitor.  But prognosis is very good.

I have an appointment with my Rectal Surgeon on Feb. 1 to discuss when I can get the ileostomy reversed.  Most likely they will have to wait a few months for my blood counts to recover. My white blood cell count is very low but not to the point that they need to suspend treatments.  I look forward with great anxiety to getting rid of the ostomy bag.  I hate having it but when it is removed, I will have to deal with not having a rectum which will make it difficult to control the urge to go. The on-line discussions say I will learn to control over the first few months.  But it still scares me.
 
Thanks for your prayers and concerns.

Journal entry by Bob Stromberg

I just completed my third week of radiation treatment.  I have three more weeks to go.  So far, everything is going very well.  The primary effect of radiation is having to urinate more frequently, which I am feeling.  The other effect is diarrhea.  Since I am on an ostomy bag, it is not much of an issue for me.  But my output is more fluid so I have to take an anti-diarrhea pill more often.  The reduced radiation primary risk is dried, cracking hands which can be painful.  I did not have much issue with this until this weekend when I worked outside all day Saturday in the cold.  My hands got very cold and chapped.  I have been putting hand lotion on my hands frequently starting that evening.  They are getting better but much more slowly than normal.  Hopefully they will fully recover.

The other inconvenience is having to go in for treatment every morning.  Work is very accommodating in allowing me to miss time and make it as I can.  But missing 1.5 hours every morning is a little stressful since I miss multiple meetings and feel like I can't get caught up.  I used to make an effort to swim at lunch time a couple days a week.  But now I use that time to make up for missed hours.  So instead of swimming 3 x per week, I am swimming about once every other week.  Combined with the chemo and radiation which reduce my energy level, my swims are much slower.  Muscle wise, I don't feel too bad.  But I tire quickly and need to stop often to catch my breath.  I used to swim a mile in under 30 minutes.  Now it is taking closer to 45 minutes.  I guess it is still better to swim slowly then not at all.

Thanks to everyone for your prayers and generosity.  I am convinced it is making a difference.

Journal entry by Bob Stromberg

Sorry for the lack of updates.  I completed the first phase of my treatment - chemo with a concoction of three drugs called Folfox which is a combination of leucovorin, 5-FU, and oxaliplatin.  I now have a three week break and start a combination of radiation and reduced chemo (5-FU only) on October 22.  The 5-FU will be a daily pill (lower dosage) vs. initial infusion plus a 2-day continuous infusion with a pump which I carried in a fanny pack.  The pill has some different side effects, mostly severe drying and cracking of skin on hands.  They recommend the pump for higher dosage but pill OK for lower dosage and lower risk of drying/cracking of skin.

Some of the side effects of first phase (Folfox) were inconvenient but not horrible.  I did not like the pump because it is bulky to carry and difficult to sleep with.  Looking forward to not having that.  The oxaliplatin has two side effects.  First, it gives everything a metallic taste.  I love spicy food which turned out to be a very good thing because it overpowers any metallic taste.  I normally love coffee (drink way too much) but only drink one cup a day now because it tastes bad.  The second side effect is cold sensitivity.  If I hold anything cold in my hand, it begins to burn within a few seconds.  I also cannot eat or drink anything cold for about 10 - 12 days after each treatment.  It is almost like being allergic to cold, my throat feels like I am being choked.  They say as it turns colder, I will need to wear a scarf over my mouth to breath (filter/warm up the cold air) and wear gloves when outside.

Thanks to everyone for keeping me in your prayers. I am 100% convinced it has made a huge difference.  As I said above, the treatment is an inconvenience which is blessing compared to the alternative.  Prognosis is still very good for complete recovery.  God is good.

I will try to post an update after a week or so of combined treatment to let you know how it is going.

Journal entry by Bob Stromberg

I met with the Radiologist and Oncologist last week and have finalized my treatment plan.  I had a port (a long term type of IV that is in the chest under the skin and connected directly to one of the veins of the heart) inserted today.  Tomorrow I meet with an Oncology nurse to discuss all the side effects of chemo.  My chemo treatments begin on Wednesday.  They will connect a pump and the drugs will be continuously infused for two days.  At the end of two days, they disconnect and remove the pump.  I will wear the pump in something like a fanny pack with tubes connected to the port taped to my chest under my shirt.  This process is repeated every two weeks and continues for six months.  They anticipate nausea the first infusion and will treat with anti-nausea medication.  Approximately two months into the chemo treatment, they will start radiation treatment concurrent with chemo.  This will be every day for six weeks.  After that, they will complete the treatments with chemo only.

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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