Michele Knuff's Page

CANCER PREVENTION AND TREATMENT FUND

Stop Cancer Now 5K Run/Walk

Washington, District of Columbia

Michele Knuff's Page

To all our dear friends and family,

Please help us honor Bob, the love of my life, the best husband and dad that ever was, your brother, your uncle, your co-worker, your coach, your neighbor, your friend, and STOP CANCER NOW!  By participating in this walk or donating, you can help fund cancer prevention and treatment. For this walk and everyday forward please wear black & white zebra print proudly in honor of Bob. . . it is the national cancer awareness symbol for neuroendocrine/carcinoid cancer which Bob had. We will do this walk as an annual event too.

Bob's story. . . Bob was diagnosed in February 2010, at the age of 48 (and in perfect health), with carcinoid cancer after he had a biopsy on a small lump in his neck. His oncologist informed us that although his cancer was malignant and that there was no cure at the present time, his cancer type was very slow growing, latent and many people lived for 10-20 years without problems. We found the news encouraging and felt that time was on our side, and that there would be a cure soon and in time to help Bob. Bob's only treatment then was to receive monthly injections of "Sandostatin" which helped control his flushing symptoms (a rare side effect of carcinoid tumors).The monthly injections worked wonderfully and Bob continued to live a full, healthy life.

In June 2012, Bob began to have back pain. He thought it was a herniated disk which he had had problems with 17 years prior. But after a CT scan was performed he was told that a tumor had logged itself into his lowest vertebrae and crushed it.

On August 17, 2012 Bob underwent a 10 hour back surgery to remove what tumors they could and reconstruct his lower spine with titanium rods. Back surgery was a success yet the tumors could not all be removed. So, while Bob was recovering from back surgery, he also underwent 5 months of heavy chemo treatments. The chemo, (Etoposide and Cisplatnin), even though it was not specific for carcinoid cancer, was an attempt to calm down his tumors and at least shrink them in size. He was a trooper, stayed strong and positive, and kept on joking about how he had to go to "adult daycare" for his chemo treatments.

Jan 24, 2013 Bob was cleared to go back to work just a few weeks after finishing his last round of chemotherapy. The next few months Bob continued to get stronger and feel a little more like his old self.

On March 26, 2013 Bob had a very good appointment with both his oncologist and orthopaedic spine doctor. They both said he was doing well, healing nicely and the tumors seemed under control again and to come back in three months for a followup. What wonderful news!

Mid-April 2013, Bob began to have more back pain again. So, back he went to check-in with his Orthopaedic spine doctor. For the next month Bob was in and out of appts. with that doctor, got x-rays, ct scans, bloodwork, a transfusion, all the while becoming more uncomfortable, tired and in increased pain. Finally his back doctor cleared him and said that his back still looked fine and he believed it might be Bob's tumors acting up again.

May 29, 2013 Bob finally got in to see his oncologist. He was examined, given more pain meds and told that there wasn't anymore that he could do for Bob! That he was all out of treatment options! We of course were in dismay, couldn't believe that Bob's oncologist for the past three years was suddenly out of ideas. We pressed him about getting a second opinion from John Hopkins where they specialize in Bob's type of tumors. He agreed that that would be a good idea. Bob and I had thought he had been conferring with John Hopkins all the while yet now we were doubting that. We forged ahead and made an appointment at John Hopkins. The first available date wasn't until July 3, but on our urging they had a cancellation and were able to see Bob on June 21. Deep down I couldn't believe that there wasn't more of an urgency by his doctors in getting treatment for Bob. I felt as though his oncologist had given up. Everyday that passed by I felt let him slip away and become sicker. It was maddening. . .

During June 2013, Bob was hospitalized twice. The first to get his pain under control, which only happened because of our insistence and my pleading and the second time was because his pain care specialists overmedicated him and he was totally wiped out one day unable to move, eat or drink and therefore he became dehydrated and quite sick.

Finally June 21, 2013 came along and we finally made it to John Hopkins. They did have treatment options for Bob, yet were concerned if he would be able to tolerate them in his declining condition as well as being worried about his bloodwork and kidney function levels. So, Bob and I made sure he ate well, stayed hydrated and got plenty of R&R. Finally by early July the doctors were pleased with his levels and ordered the new chemo medicine. This new medicine was an oral pill that could be easily taken at home. It had fewer side effects than traditional chemo. It was also targeted for carcinoid tumors and they had been getting good results with it for about seven years. Why Bob's oncologist did not use this medicine on Bob earlier remains a mystery to us. Supposidly he had conferred with John Hopkins, but now we really wondered.

July 10, 2013 Bob began his new, targeted chemo medicine, Temodar. He took it for five straight days. Bob did fine with it and had little side effects. The next few weeks Bob continued trying to eat well, hydrate and get his R&R. Yet as the weeks went by I noticed that Bob was getting more uncomfortable, quite weak and having a hard time concentrating. His labwork continued to look good so we just kept plugging along waiting for his next round of medicine to start and to begin to see some good results.

On July 30, Bob was to go in for his labwork as we did weekly, yet this time it was clear to me and friends that Bob was too weak to go. We called the ambulance and they took him over to the hospital. Once there, they realized Bob had pneumonia, and had it for a few weeks. They put him on the breathing machine and admitted him to ICU. Bob still was staying tough and fighting, not once giving up hope. The ICU team was wonderful, doing all they could. Once again Bob's vitals and labwork continued to look good. Then on Saturday August 3 things began to change for Bob. The cancer just took over and he could fight no longer. Bob died peacefully, holding my hand, Sunday morning August 4, at 2:30am, at the age of 51, with myself and friends at his side 

Please share our story to educate and help our future generations. Today we are saving many lives yet still there are many, like Bob's, that aren't being saved. We need better detection, awareness and treatment availability for these rare, lesser known cancers. Bob's and my message to all is to love and enjoy life, face each challenge with courage, dignity and don't ask why, and just never give up

. . .  but most of all smile and laugh as much as you can.

With love, Michele, Abby and Ben

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