MD Anderson Cancer Center

Part 1

The following is a series of events that lead to my Chronic Kidney Disease, presented by my wife Vivian:

Hello,

We are coming for an evaluation at the amyloidosis center at Boston Medical Center on September 10. We have had records sent and are now sending additional information.

This is a chronology of events prior to Suhail Idriss's diagnosis which may be helpful to you. Could you please include it with previous records sent or faxed to you for his appointment? We will also have the results of all labs done since Suhail was seen at MD Anderson until the latest from mid July.

Suhail had been seeing an integrative medicine practitioner, Dr. John Johnston, in Webster, TX beginning in summer of 2009.

We chose him because Suhail had developed high cholesterol and metabolic syndrome along with high blood pressure, and we did not want to go the usual treatment route. Suhail ate a healthy Mediterranean diet, and we did not understand why his health was declining. He did eat a lot of bread and worked long hours without exercising, so we thought this might be the issue.

Suhail began having protein in his urine, and in 2011 the doctor recommended he see a kidney specialist. Suhail kept it to himself and did not go.

I often went to Suhail's appointments with him, and the doctor never mentioned it. He did put Suhail on a Paleo diet, greatly reducing his carbs. We had always eaten a lot of fresh fruits and vegetables and whole grains as well as lean meat and fish. We also ate a lot of nuts and healthy fats and oils, but Suhail's cholesterol continued to climb.

The doctor did some specialized testing and found that Suhail was compound heterozygous for the MTHFR mutation and had one copy of the Factor V Leiden.

Suhail was taking methylfolate and methyl B12, a good multi vitamin/mineral, resveratrol, 2 grams of good quality fish oil twice daily, magnesium, curcumin, extra vitamin C, astaxanthin, and baby aspirin. Food was cooked from scratch, and Suhail did not eat junk. He exercised occasionally on the treadmill, but not much changed. We must have eaten at least 10 servings of fruits and vegetables a day.

In October of 2014, Suhail had hernia repair surgery.

Around the same time, the doctor began him on Lisinopril, taking him off of his 10 mg of Norvasc to try to improve his kidney protein, which was still climbing. He did not check him for months, and by that time, his GFR had dropped 20 points. We were really concerned and were looking for answers. We had read a Life Extension article on an ARB, and it talked a lot about the benefits.

We gave a copy to the doctor and asked him what he thought. He said it sounded worth a try and put Suhail on it. Again, he did not monitor him every few weeks. A month or 2 later, his GFR had dropped another 20 points.

By this time, he was spilling massive amounts of protein in his urine. The doctor said it was because of his sugar level, but it was never high, and his blood pressure had also been well controlled. It just did not make sense. Suhail was losing weight and becoming increasingly tired.

The doctor told Suhail to see the kidney specialist.

Before that, he had Suhail have a kidney ultrasound. It showed the kidneys to be normal in size. When Suhail tried to make the appointment, the Kidney specialist was hesitant, saying that he was not sure all necessary tests had been done before he saw him. Suhail also wanted to wait a couple of weeks to see if the ARB improved his kidney function.

When the kidney specialist saw Suhail, he agreed that his blood pressure had been well controlled and that his blood sugar was not elevated.

He believed something else was causing the kidney issues. He believed it might be minimal change disease, and he arranged for Suhail to have a kidney biopsy. We had just closed on our retirement home in Georgetown, TX, and Suhail was set to retire from the Corps of Engineers in May.

The results of the kidney biopsy surprised the doctor. He met with us, told us it was amyloidosis, did not know if Suhail also had multiple myeloma, and handed us a stack of printed material on the disease.

He told us we needed to make an appointment at MD Anderson and left the room. That was that.

We were surprised at how soon Anderson would see us. It was literally the next week. We did days of testing, and the results are included in paperwork that we will bring.

We also had records forwarded to you. Dr. Donna Weber was Suhail's hemotologist/oncologist. She was excellent.

She reviewed all treatment options and their side effects. She began him on Velcade injections once a week with twice weekly Dexamethazone. Suhail went through 2 rounds. She advised that he stop all nutritional supplements, especially curcumin and green tea, since studies had shown that they interfered with the Velcade.

Tests had shown that the amyloid was limited to the kidneys. Looking back, maybe the antioxidants had kept the amyloid under control.

Suhail tolerated the treatment, and his disease responded. It was decided that he was ready to go to stem cell transplant after 2 rounds of chemo.

He was turned over to the stem cell department, and we would not see Dr. Weber again until his follow up once it was over.

Part 2

Dr. Patel was his stem cell doctor.

This department was hectic, crowded, and nothing like the care we had gotten previously. Dr. Patel often told us that they had caught Suhail's disease relatively early and that he was an excellent candidate. Suhail was admitted to the hospital for stem cell mobilization from August 9-August 12.

He handled it very well - much better than they had expected. He did retain some fluid once he was released, and in his follow-up exam, Dr. Patel placed him on 3 days of Lasix + potassium from August 14-16, low dose. On August 21, 2015, Suhail was admitted to the hospital for stem cell transplant.

Dr.

Patel had said that she planned to give him the full dose of Melphalen. Suhail was 4 months away from his 70th birthday, so I was concerned. She was emphatic that he would do well. She did not discuss possible dangers.

We also met with the kidney doctor, Dr. Abudayyeh. Both agreed that he would do well.

On August 22, 2015, Suhail was given the full dose of Melphalen. He packed his mouth with ice chips throughout the infusion and never developed oral mucositis.

He was started on Levonox.

On August 23, Suhail was started on Fluconazole.

August 24 - Day 0. Stem cells infused into Suhail.GFR was 43. Creatinine was 1.5.

August 25 - Day 1. GFR 48, creatinine 1.46.

Started on Levaquin.

August 26 - Day 2. GFR 53, creatinine 1.33.

August 27 - Day 3. Nausea started in early morning. GFR 60, creatinine 1.20.

Started on Compazine.

August 28 - Day 4. GFR 57, creatinine 1.25.

August 29 - Day 5. Vomiting at night. GFR 54, creatinine 1.31.

August 30 - Day 6.

GFR 55, creatinine 1.30. Nausea in morning. In the afternoon, switched to nausea meds every 8 hours.

August 31 - Day 7. GFR 54, creatinine 1.32.

Diarrhea began around 7 a.m.

Sept. 1 - Day 8. Severe diarrhea in early morning hours as well as nausea. As I entered the room, I saw Suhail bright red.

I felt his face and forehead, and he was burning up. Nobody even knew. I told the nurse/aide, and she said, "Good call!" He had a strong fever and was started on Vincomycin. A culture was done for c.

difficile. GFR had dropped to 46, and creatinine had risen to 1.50. He was taken for chest x-ray, and it was clear. The doctor explained nothing.

On one of these days he was also taken for a kidney ultrasound. The results were not discussed with us.

Sept. 2 - Day 9. Fever was down.

Given platelets. Anti diarrheal med increased. Suhail had had 12 diarrhea episodes Tuesday night. Fluids were not increased.

GFR now 40, creatinine 1.71. The culture was negative. Doctors said nothing. Suhail was not producing much urine anymore.

Sept.

3 - Day 10. No fever. Temp 99. Suhail had been up all night with diarrhea.

GFR now 28, creatinine 2.29. Doctor asked how often Suhail had had diarrhea, and the nurse told him. Why hadn't he known before? Doctor said Suhail had engrafted.

He said he was taking him off Nupogen and the antibiotic. He was very quiet and said very little and would not look me in the eye. It was either this day or soon after that Suhail's urine was reddish brown. I told the nurse.

I was helping all the time with Suhail's care, keeping track on the board in the room of his intake and output. He was not getting enough fluids and was not urinating like before. When I told the nurse about the color of his urine, she asked me if I would describe it as amber, and I said, "Yes."

Sept 4 - Day 11. By now, nurses were not looking me in the eye.

Doctors were not communicating. GFR was down to 22, and creatinine was 2.83. For days, Suhail's lips had already been cracked and peeling. His mouth was so dry that he could barely speak.

He was out of his head, talking randomly and senselessly. I told the front desk, and the nurse came in to ask him questions about what day it was, his name, etc... Suhail answered them, but I knew he was not mentally himself.

Sept 5 - Day 12. Our kids came in from out of town.

The first thing they noticed was that their father was not himself mentally. They also were shocked at the severe nausea and diarrhea and how completely dry his mouth was and how his lips were peeling. GFR was now 20, creatinine 3.16. I was very upset.

Doctors told us nothing. At some point, they began to increase fluids. Apparently, the damage was done. I requested several times for the nephrologist to come in for a consult, but she never showed.

We did not see her one time. His stem cell doctor, Dr. Patel, had only stopped by early after transplant in the evening once. Other than that, we did not see her, either.

Suhail had begun with Dr. Basheer as the doctor making rounds.

Sept. 6 - Day 13. Dr.

Popat took over as the rounding doctor.

Suhail's GFR was 20, creatine 3.11. The nausea and diarrhea were continuing and severe.

Dr. informed us during initial consultation they would be using the leading edge CAR-T therapy for my wife.

We were very excited as this is what we had hoped for. CAR-T was the plan A option, Dr. didnt even cover the plan B option as she said CAR-T was the way to go. The Dr.

left the room so we could speak with a rep about the CAR-T process and what to expect. The rep informed us we could not receive CAR-T therapy as there were already several patients in line for this so would not be available for us. It is what it isbut you would think the world renowned Leukemia Dr. would have known that prior to telling us that, then going through the letdown of having that yanked right out from under us.

The Dr. wasnt available to discuss this for several days, only heard from one of her PAs, but they could not speak to it, so had to wait. Finally the Dr. said we would be going with Plan B which is just as good as CAR-T (didnt seem to be the case in the initial consultation).

So now the Dr. apparently dislikes me (husband care taker), or it seems that way. Now since Plan B didnt work, and the Dr. is talking about hospice care, all the while saying we can try another regimen if wife is still wanting to fight.

Or we can just go back home to Dallas and just enter hospice care there. It is plainly obvious that the Dr.s here want is out of their hair, even though an offer to try something else was offered. And strangely enough (or coincidence?), our scheduled appointments indicated on My Chart are consistently incorrect, and then we were charged an office visit co-pay on what was about our 30th visit.

And the last appointment this past Monday was so Ill planned/executed, that my wife didnt get finished until 10:30, then we had to do another infusion on our own at the hotel later that same night, so were up until 2am. Not good for such an Ill person to suffer through neglect and mismanagement of the scheduling

I became a patient in 2020. My diagnosis is Advanced Renal Cell Carcinoma .

I had a doctor in Louisiana yet thought my chances would be better here. After a couple of meetings with the doctor he to me off of immunotherapy and put me on targeted medicines which worked for some times until they were no longer working. Mine you there was never any rapport built with the Physician and myself. He just let me know he was the Expert.

I was going into a Trial when I came July 11,2023. I had Acids case when I arrived and had to be drained. More fluid than directed was drained and I had and episode which landed me in the Hospital for 9 days. My kidney was bruised.

I was discharged home in worst shape than when I came. My chart indicated that I had appointment on July 29 . The doctors and providers from a facility here was in contact with MD Anderson during that time. I was sent a message stating that I didnt need to come there for my doctor would be calling me.

The call was for 3 pm and he called at 1. Luckily I answered the phone. The expert told me I no longer qualified for the trial and should contact hospice. Discharged over the phone.

I didnt bruise my Kidney the Hospital did . Angry in Louisiana

MD Anderson continued aggressive treatment until one hour before my friends father died of lymphoma. He was suffering and in pain.

They would not give him enough pain medication. He was intubated and had tubes and monitors everywhere. He was an agony for two weeks. MD Anderson did not notify the family that he was terminal until two days before he died.

They begged them to let him die in peace. They kept saying they wanted to see if they could make him well enough to go home. This was until one hour before he died. We also had to sit in the room with him for an hour and a half before they transported him to the mortuary.

Please dont go to MD Anderson. They will just use you as a guinea pig.

My mother goes to md anderson as a last resort because they are supposed to be the most in the nation. What a joke that is!!

Her patient advocate treated me like dirt when I called to complain that her doctor doesn't explain anything and still has not given her any other treatment options other than the one her body rejected. They want us to get all her files and do all the leg work when that is their job.

A majority of the staff doesn't know what's going on, nor do they want to help you. Always a wild goose chase and good luck getting ahold of someone with care and compassion for you and your family!