Apr 13, 2013 - 11:20 am
May 6, 2013 Update
John had his May 2 infusion and is back on schedule with Votrient dosage (800 mg) and Nivolumab infusion every three weeks. He has been experiencing some nausea over the past couple of weeks. Hard to believe but this Friday, May 10, will be John's one year anniversary in trial.
On another note--yesterday, May 5, 2012, we walked in our second National Kidney Foundation walk at the Maryland Zoo. The walk raised almost $315,000!
April 17, 2013 Update
John had scan today which showed reduction in the ground glass nodule, but Dr. Hammers decided John should skip tomorrow's infusion. Next infusion will be May 2.
But GREAT news from the latest RECIST report--tumor burden reduction now at 57%!!!!
April 12, 2013 Update
John’s mouth sore has cleared up and gum bleeds under control. Back to Votrient 800 mg. Labs and scan were done yesterday (4/11/13). Infusion scheduled for today but postponed due to yesterday’s scan noting “new small irregular ground glass nodule in lower left lobe that may be inflammatory.” Dr. Hammers concerned this may be pneumonitis, a serious (sometimes fatal) side effect of Nivolumab. However, he feels it is a grade 1 low level infection and has prescribed antibiotics. We will meet with doctor again in a week (April 18). The good news is scan did not note any tumor growth.
April 1, 2013 – Votrient Side Effects/Gum Bleeds – Mouth Sore
Today—for the first time in 326 days—John (one putt) will not take his Votrient pillls. Dr. Hammers made the decision to pull him off the medication (Votrient) temporarily (3-7 days) to allow his mouth time to heal. He’s been experiencing gum bleeds and has a nasty mouth sore that has been giving him trouble over the past week+. He also has a dentist appointment on Wednesday to see if the sore is actually an absess and to rule out osteonecrosis (ONJ).
He’s a little disappointed to interrupt his *record as he takes great pride in his continuous dosage. (*According to his research nurse he’s the only trial participant that hasn’t taken a break from Votrient/Pazopanib.) But he/we know how fortunate he has been up to this point.
January 16, 2013 Update on John's (one putt) Nivolumab / Votrient Trial
John had his 36 week scan on Wednesday, January 16. Scan basically showed stability since last scan. But the report came with an initial gasp as his nurse noted what she considered good news: “John’s liver tumor had decreased in size.” That wasn’t particularly well received as John didn’t know he had a liver tumor. After John questioned this, Dr. Hammers confirmed his belief there is no liver tumor and that the radiologist’s comment on the report was not a cause for worry.
Overall, John and I are extremely happy that he continues positive results from the Nivolumab/Votrient trial. John hasn’t posted these results as I believe he’s experiencing a little guilt. Keeps asking why he continues to get positive results when so many aren’t as fortunate.?.?
MEDSCAN MAN – hope you are around to comment and make sense of the liver question. This is what is noted: “Abdomen: In the arterial phase inferiorly in hepatic segment 6/7 a 4.7 mm enhancing lesion has been decreased since prior studies measuring 8.8 mm on the study of 8/1/2012.”
December 1, 2012 Nivolumab ( new official generic name for BMS936558 - MDX-1106 )Liver Issues
John's liver enzymes are a little elevated but not seriously so, not enough to pull him off the trial. But the elevated liver enzymes issue has been a factor in many of the patients in this trial which is why I understand they are not continuing the votrient/nivolumab arm. The people that are still on the trial (only 18 I last heard) will remain on it as long as they achieve positive results or stabilization unless the liver enzymes become a bigger issue for them.
Thanks for your suppport Ange. If he has to discontinue this trial, we'll look into other treatments or trials. I personally would love to see him get some relief for the shoulder mets and wonder if the cabo trial might be in his future. Other than this trial (votrient/nivolumab), his only other treatment has been HDIL2. So that leaves many doors unopened. We just have to continue to look at this as a chronic disease, not a fatal one.
October 24, 2012 BMS936558* Votrient trial (formerly MDX 1106) John's 24 week scan
Wish I had better news to report but I'm not complaining. John had his scan today and it showed stabilization, basically no additional shrinkage, but, more importantly, no growth.
While he was awaiting his scan, his research nurse (the dear Monica) talked to him about Afinitor as a possible next step if his scan showed growth, but since it's stable, he will remain in trial. Next scan will be in 12 weeks. Will keep our fingers crossed for continued stabilization.
September 21, 2012 BMS936558* Votrient trial (formerly MDX 1106) John's 18 week scan
John had his third CT scan on 9/12/12 since being on the MDX1106 (BMS936558)/Votrient trial. We received the RECIST (Response Evaluation Criteria In Solid Tumors) from the Radiologist this morning showing total shrinkage to date to be 46% (31% shrinkage first scan; 11% add’l. second scan; and 4% add’l. third scan). While we would have loved to see another double-digit reduction, we’re thankful it’s still moving in the right direction.
August 3, 2012 BMS93558* Votrient trial (formerly MDX 1106) John's 12 week scan
went with John to his doctor’s appointment yesterday and I brought up his thyroid/medication levels and questioned his need to stay on those meds. The oncologist agreed it was reasonable “to stop the medication for six weeks and see where we are at that time.” So John has one less drug to take for now.
He also had a CT scan. As most of you know, John is on the Votrient/BMS 936558 (MDX 1106) trial and his previous scan on 6/20/12 showed a 31% reduction in tumor burden. It appears that his improvement is continuing though I don’t have a percentage of reduction yet. The percentage number comes days after the scan from the clinical trial sponsors. I’ll post that when it comes.
Two of the impressions are noted below:
One other impression caused us some concern, though his doctor isn’t too worried about it. Said it could be side effect of medication and something we will watch.
“4 mm focus of arterial enhancement in segment 6 of the liver which is hypodense on
July 15, 2012 Brief 9-Week Update
John had his nine week infusion on Thursday (BMS93558) and had bloodwork, ekg, etc.
The bloodwork was overall okay with alkaline phosphatese still elevated - still bouncing around. A month or two ago it was over 800 now it's at 325,but it was 250 three weeks ago. I believe the optimal number for this is between 30 and 120. They attribute the elevation to bone involvement, but intend to do nothing about it right now.
One liver function test--alanine amino transferase--is slightly elevated which could be a side effect of the Votrient/Panzopanib. The thyroid test also was low (0.05), even after lowering the thyroid medication last visit. They've cut it in half for the second time and will continue to monitor. To be honest since it's lower this time than it was last time when they cut it, I wonder why they just don't stop the medication, but they certainly know more than me. I hope this can somehow explain his lack of energy overall.
His red blood cell count continues to climb but still below normal (2.12). His platelets also are little low, another possible side effect of Votrient.
He also is going to back to his primary doctor after finding a first degree heart block. They will let him determine if John needs to see a cardiologist.
June 20, 2012 BMS93558* Votrient trial (formerly MDX 1106)
John had his six-week CT scan today. For those of you that are unfamiliar with John’s history,see below for quick update.
The scan showed SIGNIFICANT interval decrease in the size of multiple pulmonary metastases with no evidence of new lesions. There also is a decrease in the pelvic and shoulder regions.
The research assistant who walked him through the tests today was thrilled. She said with this much improvement in six weeks, she can’t wait for the twelve week scan.
May 10, 2012 MDX 1106/Votrient Trial
Okay, we're back on for May 10. EKG's went okay. Since the blood work showed no red flags, the fever and wbc count is being attributed to tumor fever. His thyroid count is low and he will receive medication to bring that up and hopefully restore some of his energy.
May 3, 2012 MDX 1106/Votrient Trial
Yesterday didn't go perfectly. John's been having terrible pain in his shoulder for several weeks now. Yesterday his scan showed bone lesions, growth in his lung nodules, and a pelvic mass. His EKG was a little high (457) and he had a fever and an elevated white blood count. His EKG must be below 450 to qualify for trial and they are going to do another EKG tomorrow. Their thinking is the fever and elevated WBC may be attributed to tumors and his ingestion of nausea medication prior to the EKG.
If EKG is below 450 tomorrow and there are no more setbacks or red flags, he will begin the trial on May 10. He and I are very anxious to fight this disease and have been in a hold mode too long. Fox has had great results with MDX and we're hoping to join him on the winning side of the field. Keep me posted on your plans so we can compare notes.
May 1, 2012 MDX 1106/Votrient Trial
John will be at Hopkins tomorrow being screened for admission to the MDX 1106/votrient trial. Oncologist's office told him to be prepared to be there all day with tests - blood, ekg, stress, etc. He's concerned about stress as he's been miserable with sholder pain for a month now. (Doctor prescribed oxycodene a couple of weeks ago but hasn't helped much.)
If screening goes okay, he'll start trial on May 10. Then on May 11, they have scheduled an MRI of his shoulder.
Johns History at Johns Hopkins:
After weight loss for several months and then the development of cough, on 10 /14/11 met with internist at Johns Hopkihs and diagnosed with Kidney cancer clear cell/grade 4/stage 4 – with sarcomatoid features and lung mets; also has soft tissue mass in shoulder area and pelvic area.
Treatments to date: