Journal

Journal entry by Joan Stromberg

Just wanted to give you an update on Bob and his treatments. He did receive another infusion of the panitumumab a week late, but he did receive it. The side effects are still in full force, this time with more mouth sores and rash along the torso making Bob fatigued and uncomfortable. He is scheduled to have his third infusion this Thursday. After four treatments (or about two months) they should schedule another scan to see if this treatment is more effective than the others.

Meanwhile, we were able to take our pilgrimage to New Orleans for the Blessed Francis Seelos healing Mass on October 6. It was a great trip and very moving. It was such a blessing for us to be able to go. We stopped by EWTN on our way down and then were able to stop by and visit my sister, Maureen, and her family in Oxford, MS on the way back.

While at the Seelos Shrine, we picked up a Novena booklet of healing through the intercession of Blessed Francis Seelos. We plan on starting the Novena on October 23 in order to finish on All Saints' Day, November 1st. If you would like to join us in the Novena, you can follow along at this blog: www.gloryofamerica.blogspot.com or you can send me your email address and I'll send you the prayers everyday for the duration of the Novena. 

We are full of hope, and with your prayers, I know that we can be joyful in each day we have together. God bless you!
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Journal entry by Joan Stromberg

Happy Feast of St. Therese, the Little Flower! She is one of my favorite saints and one that I've called on to pray for Bob and his healing.

Since the last update, we have had a few bumps along the road. The three targeted therapies that Bob was scheduled for were not approved by the insurance company. It is a fairly new and still in testing phase therapy, although with really good preliminary results. The appeal for the drug therapy was also denied. Fortunately, we have a great team at University of Kentucky Markey Cancer Center and their personal appeal by our doctors led to the approval of the drugs, which run about $25,000/month. Bob had his first treatment on September 20. There was a risk of a very severe rash and other complications and side effects from the targeted therapies. Since Bob had a year of six different chemo drugs with minimal side effects, we didn't think much of it. Of course he could handle it! 
The day of the treatment, we were scheduled to go to Kansas to visit Theresa at Benedictine College for family weekend. The treatment is infused in Lexington, about 1.5 hours away from home. We hoped that we could get out of there by early afternoon so we could hook up the camper and get to Kansas before midnight. Unfortunately, Bob had an allergic reaction to the infusion and we had to stay and get that under control. We felt it was still important to be in Kansas with Theresa for family weekend, and we had reservations in Kansas, so we left KY at 4 pm and arrived in KS about 1 am. But we had a great weekend and so much fun and family time!
Bob began to get a rash on Thursday. He called the specialist and got a prescription to control the rash. Over the next few days, it got worse and worse. It encompassed his head, scalp, neck upper torso, even his ears. The rash looked liked really bad acne, like a blistering sunburn over his face, neck and scalp. Bob couldn't sleep at night, was running a fever, and very uncomfortable. 
We went to the specialist today and got a few more prescriptions to control the rash. He suggested that we move his next treatment from this Friday to next week. Hopefully, the medications will have a chance to relieve Bob's discomfort before the next treatment. 
The good news is that when patients get this kind of rash during this specific treatment, it typically means that the treatment is effective in stopping the mutations that cause the cancer cells to grow so out of control.
So, if we can get through this, perhaps the next scan won't be as bad as the last few.
To that end, we still hope to make a pilgrimage to New Orleans this weekend for the Feast of Blessed Francis Seelos Oct. 5. I wrote a book about Blessed Francis (Willy Finds Victory), and hope to ask his prayers to Our Savior to heal Bob. Please continue to pray for Bob's healing. and thank you so much for all past prayers. It has been a couple of trying weeks and your prayers are the only way we've gotten through it. God bless you all!

Journal entry by Joan Stromberg

So, today is Bob's birthday! Please wish him a Happy Birthday if you haven't already! And thanks again for all your prayers and good wishes.

Yesterday, Bob got his first scan since the liver resection. Unfortunately, it wasn't the good news we had been praying and hoping for. The liver has regrown along with numerous tumors...about six in all in the liver itself. Another two or three have grown significantly in the lung areas (they had been very small and not active previously)along with a number of other "hot spots" in the original tumor site (colon) pancreas, abdomen, lung, etc. 

So,sine Bob has been through 2 surgeries, a year of 3 different chemo and radiation treatments, his doctors were looking for an outside the box treatment. They have decided to start a targeted therapy treatment of three different targeted therapy treatments. They hope these treatments stop the progression of the disease so that Bob's own immune system can handle those cancer cells left behind. This is a very experimental clinical trial that has very good initial response, but no long term results.

Today is Bob's 59th birthday. If you can send him a B-day message, I'm sure he will greatly appreaciate it. kawmebob@aol.com or 502 475 1269. Thank you for your prayers. 

Journal entry by Joan Stromberg

Just wanted to update you all on Bob's recovery from surgery and where we stand in treatment of the cancer. Bob recovery from surgery went very well. While he was recovering, he usually walked 2.25 miles twice a day. Most of us couldn't keep up with him, he was walking so fast! He was medically released to go back to work this week and is doing very well.

The biopsy from the liver, swollen lymph node and gall bladder was good and bad. The liver tumor had grown quite a bit and was actually starving itself and the center of it was necrotic. The tumor showed that none of the chemo treatments had much effect on it. The lymph node was about 2.5 times larger than it was supposed to be and was completely full of the aggressive, high-grade neuroendocrine cancer. Since it is the lymphatic system that the cancer uses to spread the disease, this was not good. The gall bladder, however, was cancer-free (yeah!). 

The specialist, Dr. Anthony, at the Markey Cancer Center at University of Kentucky, met with us on August 2nd. He said that we really couldn't do anything until we get a PET scan when Bob has healed from surgery. That scan is scheduled for Aug. 30. Dr. Anthony will read the scan and meet with us the same day so we don't have to make two trips to Lexington. If the scan shows any tumor activity, we will set a course of action, most likely immunotherapy, since the chemo had very little effect on the cancer previously.  If there is no evidence of disease, Dr. Anthony will schedule another PET scan two months later. Unfortunately, he said that because of the cancerous lymph node, it isn't a matter of if the cancer returns, but when. Dr. Anthony is highly regarded and on the forefront of research in treating these rare and aggressive neuroendocrine cancers, so we are glad we are under his care.

Meanwhile, since it has been a couple of months since Bob's last chemo treatment, his hair is growing back and his energy levels are rising. His appetite is good and he looks very well. He continues to walk, although just in the evenings since he is working now, and he even started swimming again. 

We've enjoyed many visitors this summer including visits from three of Bob's sisters who were life-savers helping out during Bob's surgery, hospital stay and recovery. Our daughter, Elizabeth, who lives in Georgia, was able to spend a good part of the summer with us, also. 

We thank you all for your prayers and your thoughtfulness. We are uplifted by them daily!

Blessings,
Joan

Journal entry by Bob Stromberg

As previously mentioned, the tumor in my liver was not responding to the chemo and continued to grow and was 7 cm (almost 3") at the last CAT scan on Jun 19.  The surgeon said there was a strong chance he could do it laparoscopically.  On Tuesday, July 16, I went in for a liver resection surgery to remove the right lobe of my liver and my gall bladder.  The tumor had grown more and was now softball sized.  But he was still able to perform the surgery laparoscopically.  He also removed one lymph node which was swollen.  He made one incision for the surgical procedure, one for the camera and one to remove the liver and gall bladder.  The one to remove the liver and gall bladder was by far the largest, about 3".  I assume the organs and tumor are soft enough to squeeze through an opening smaller than the parts removed.  The stitches are internal (under the skin).  I don't know how they do that unless it is also performed laparoscopically.  Then they apply a piece of tape on the outside which will fall off in a week or two and the stitches will dissolve.

They are going to perform a biopsy on the liver and lymph node.  The results will be available in a week but my next appointment with the surgeon is Thursday, August 1 so I will not see the results until that time.  Then I go back to see the specialist in Lexington on Friday, August 2 to determine the next steps in my treatment.  I am pretty sure they are going to do more chemo based on the findings of the biopsy.  However, with tumor removed, I don't know how they will determine if the new chemo is effective.  There are a couple of small spots on my lungs which have grown but very little.  If they shrink, that would be good.

I was in a lot of pain the first two days.  The liver is just below the lungs and breathing in was painful.  I was up and walking the second day.  The worst part was getting out of bed.  Any use of my stomach muscles is very painful.  Each day got a little better and they released me from the hospital on Friday, July 19 around noon.  I am on restricted duty (no more than 10 or 20 lb).  I can eat or drink anything I want as long it does not bother me.  But no more than one or two drinks, which I never drink more than that anyway.

I went for a walk this morning around 8:30 before it got too hot.  It was already 80 degrees and very humid.  Supposed to get to mid-90s with temperature index in the 100s today and tomorrow.  I would like to go for several walks a day but likely will only get an early morning walk due to the heat.  The temperatures are supposed to break on Monday with some storms moving in and then high in the 80s after that.

Overall, the surgery was very successful and recovery is going very well.  Thanks for all of your prayers and keep them going.  I am convinced they are making all the difference between a good outcome and a poor outcome.

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 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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