"I will try my best to impart Kurt's story to you.
Kurt was a healthy, 28 year old man living in Bloomington, MN. He was a night manager for the IHOP Restaurant located near the Mall Of America. He was one of nine children and grew up on a farm in southeastern MN. Even as a child he would much rather be in the house cleaning or cooking than doing the outside work. He was very modest and you didn't very often catch him without a shirt or only on a real hot day would he be found in a pair of shorts. He enjoyed playing softball and was on a couple of teams through the summer.
March 2008, Kurt's 92 year old grandmother was extremely ill in the hospital and in his haste to come to see her he slipped and fell in the shower which was in a tub. He hit on the edge of the tub with the left side armpit area. A month later he said it was still sore and he had a slight lump there. Kurt was a 6' 3", 210 lb. man. It was a hard fall and we assumed it was deeply bruised. The first week of May he went to a general doctor and she felt everything was fine on her examination. She thought that a lymph node may have been filled with fluid and to prevent an infection she wanted him to see a surgeon because they could possibly drain it. He saw the surgeon about 10 days later. They agreed with the first doctor. As they were checking things he noticed a mole on the right side of Kurt's back which had been there for at least 10 years or better and Kurt had not noticed any change in it. They did a punch biopsy. The Friday of Memorial Day weekend they called on the phone and told him it was Melanoma but not to worry because they got the whole spot out and they were sure it wasn't going to be a problem. They made an appointment for two weeks so they could check the lymph nodes and see what was happening. When that appointment came the swelling was worse. They decided to do a biopsy and it came back Melanoma. They then did a CT Neck, Chest, & Abd. Then they also did a PET Scan. The scans showed significant left supraclavicular and left axillary lymphadenopathy. A needle biopsy of a node showed metastatic melanoma. The Oncologist that he saw a Park Nicollett in Minneapolis said it was Stage 3 and the best treatment would be Interferon but it would be extremely harsh on the body.
Our daughter works at Mayo Clinic in Rochester. Kurt had also worked there one summer and one of the doctors that they both were associated with was very concerned and he talked with Dr. Markovic who was a personal friend of his. It was arranged for Kurt to see Dr. Markovic. Kurt also met with an ENT specialist. ENT said that the mass was too large and going under the clavicle so surgery was out of the question at that time because it was such a vascular area that was involved. At the appointment with Dr. Markovic he suggested the best thing was a trial using Avastin. Kurt opted for the trial. We had received material prior to Kurt's appointment from Dr. Markovic on melanoma and treatments and outcomes. I asked Dr. Markovic what stage he thought it was and what type. He said it didn't really matter because it was serious. Come to find out later, they immediately classified as stage 4. At this time, I still never found out what type. My concern was for the 8 other children in the family in case it was familial or genetic in nature.
Kurt immediately started chemotherapy the next day. They called it the BEAM Study. It was one day a week, every three weeks by IV. He would receive Taxol, Carboplatin, and either Avastin or a placebo. They did three treatments and then did another CT Chest, Abdomen, & Pelvis. The results showed that the disease was continuing to progress. They then suggested protocol N0675 which was a combination of Temozolomide and RAD001, and the Taxol and the Carboplatin in pill form. (He was not getting the Avastin on the BEAM Study.) This would continue for 7 weeks. At the end of the 7 weeks they did a CT again and found the disease still progressing and now it appeared the lung was involved. They then decided to go back to the first treatment but not in the study so they could be sure he was getting the Avastin. They also decided to do it once every week.
Kurt tolerated all of the treatments fairly well with minimal side effects. His arm was starting to really swell from the edema due to the lymphadenopathy though and that caused considerable pain. They could not get the pain down below a 7 on a 0-10 scale.
Right before Christmas they repeated the CT. Some of the lymphadenopathy had gone down but it appeared to have spread to the spine and the liver. They could not do a treatment that week because his platelets were too low. They would proceed with treatments the following week.
Kurt had shown them a spot down in the rectal area in November and they said it was a boil and would get better on its own. He showed them again in December and they weren't really concerned. In January it was draining and smelling. Around January 15 while he was having his chemo, Dr. Markovic came in and looked at it and decided to hospitalize him and have it lanced. Instead the surgeons took him to surgery and excised and biopsied it and it was melanoma. The surgeons got Kurt's hopes up because they thought they could go in and do surgery and reduce the mass in his chest and arm area. Upon examination they said there was no way. It was way to extensive. He could not continue with chemo until the surgery had totally healed. His hemoglobin was also very low so they had to transfuse 2 units of blood. When he went in to see the Doctor in February they still could not do chemo. By this time he was having tremendous problems with his arm and he was getting very unsteady. He was hospitalized again the middle of February due to the pain. They decided to try radiation and Kurt thought it was to reduce the mass so they then could do surgery. It was just to control the pain. They never did.
Kurt was hospitalized again in March due to a severe rash. They figure it was just the cancer manifesting itself. They then at that point informed him and our family that to continue with any treatment would be more harmful than it would help. They wanted him to agree to no resuscitation but he wouldn't. He still felt he was going to beat the beast. I was finally able to convince him that it was for the best. He was transferred to a nearby healt care facility on March 18. He was getting 60 mg of Methadone and 45 mg of gabapentin three times a day. He was getting 100 mg of morphine every hour and sometimes if they were doing some type of care it was given every 20 minutes. All of this never really did cut the pain below a 7. He was also given drugs to try and calm him down so that maybe he would accept that he was dying. He lasted abou 2 1/2 weeks in the health care center.
I feel that the doctors could have been a little more informative to him and our family. I am not saying they lied but if we didn't ask the question they weren't about to offer the idea or answer. Going through something like this you don't know what all you are suppose to be thinking about or asking. At the time they said they had done everything they could they said it was a very aggressive and fast moving melanoma but never have told us what type. Never have said that maybe the family should all be checked or be watchful or anything.
I believe that no matter what the outcome was going to be the same. I have no bitterness and I am thankful Kurt was able to have the expertise and care available to him that he did. He fought very hard. It was just not meant to be. He is now out of that pain and despair and for that I thank God daily.
Thanks for listening to Kurt's story. He had a tremendous birthday the other day, I am sure of it. I passed along your wishes."
Rhonda Graner
My heart goes out to the Graner Family.
Being on the frontline of this war, I sometimes become numb on what is going on around me and what we are fighting for. This story helps me focus on the task at hand. We need to find a therapy that at the very least, stops the progression of this terible disease. We all need to work together to find a cure.
Take care
Jimmy B
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