MONDAY, SEPTEMBER 30th, 2019 So Chris is still in the hospital while they treat his back pain and extreme leg fatigue. So far he has received 2 doses of radiation to his upper spine (T4 region). As a result, his back pain has been doing a little better. He is still receiving doses of Dilaudid every hour. Dr. Shah saw Chris this morning and told him he also has a lesion pushing on the L2 portion of his spine which is the reason for his leg fatigue and some bladder side effects. They will begin a 5 dose radiation treatment on this area as well starting tomorrow. As of right now, there is no immediate plans for Chris being discharged from the hospital. Currently we are just looking for some extended relief from his back pain/discomfort and for his leg strength to return to normal. Thank you for your continued support. V
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SATURDAY, SEPTEMBER 28th, 2019 The last few day have been busy for Chris. After getting apheresed on Monday, we went in to see Dr. Shah on Tuesday. Chris's blood work looked good, but he was having significant pain in his upper back between his shoulder blades. After discussing the pain with Dr. Shah, it was determined that Chris would get put on Dexamethasone (a steroid) until Friday when he would receive a new chemo (Polivy and Bendamustine) to help with the pain until he could get his CAR-T cells back. He also ordered a chest CT and a spinal MRI to see what might be causing the pain. Unfortunately, getting chemo now pushes the date he can receive his cells back to October 21st, but Chris needed a different treatment now that his cells had been collected. Once on the Dexamethasone, Chris's pain starting getting better, and he was using less pain killers. Unfortunately, his pain starting getting worse on Friday. We were hoping the chemo would help his back pain, but aft
MONDAY, SEPTEMBER 23rd, 2019 Today was the Day! Chris had an early start this morning with lab work at 6:20 and a central Mahuker line placement at 7:00 am. Chris must have been tired, because he had a mini bouffant modeling session (for your viewing pleasure below) while waiting to get his line placed. Afterward we went to Dr. Shah's clinic to start the apheresis. It was decided that Chris would be drawn for both T-cell draws today instead of spacing the out over two days. This makes today a pretty long day, but tomorrow we can meet with Dr. Shah and hopefully Chris can get a dose of a new type of chemo since he T-cells are done being drawn. The first T-cell draw went well, and Chris is currently in the middle of the second. He feels tired, but that is the only side-effect he's had from the apheresis so far. I will continue to update everyone as Chris's appointments continue. V
THURSDAY, SEPTEMBER 19th, 2019 Chris received the best news today! The letter of agreement has finally been signed between Froedtert and our insurance. Chris will be drawn for apheresis on Monday (9/23) and Tuesday (9/24). He will be drawn on Monday for the round of CAR-T therapy he will be receiving in 3 weeks. In the event that this round of CAR-T therapy is unsuccessful, Dr. Shah wanted to have a second set of unaltered T-cells that could be modified and harvested again in the event that a clinical trial for CAR-T would be available/needed. Apparently, in some cases where the patient had a previous round of CAR-T therapy, their T-cells were not able to be harvested well after being previously modified. Dr. Shah is looking to avoid this by freezing some of Chris's T-cells just in case things don't work out. We are so so so happy today! Now, Chris is just focusing on trying to stay as comfortable as possible while experiencing pain until Monday gets here. Thanks
WEDNESDAY, SEPTEMBER 18th, 2019 We saw Dr. Shah yesterday. Chris's labs all looked good, although Chris is having increasing back and hip pain. After speaking with the transplant coordinator at Froedtert, Dr. Shah felt hopefully that the letter of agreement would be signed by the end of the week. So...we are keeping our fingers crossed that it gets signed by Friday. Chris has a tentative apheresis date on Monday (9/23) with Froedtert in the event that everything goes through. The PA at Northwestern also called while we were waiting to see Dr. Shah. Apparently, you cannot have two approvals for CAR-T therapy at two different institutions at the same time. So we are waiting until Friday for something to happen with Froedtert, otherwise we will cancel the CAR-T approval with Froedtert and persue CAR-T therapy at Northwestern. Hopefully, we will have a positive update by the end of the week. V
MONDAY, SEPTEMBER 16th, 2019 It's been quite busy the last few days. As of Friday, close of business, Froedtert and our insurance had not come to an agreement. So, we saw Dr. Karmali this afternoon at Northwestern for an initial consult. Her and her PA were on board with expediting the process as much as possible. After today's appointment, they are submitting the paperwork to insurance for approval. Ideally, everything will be approved quickly and Chris can tentatively be apheresised on Tuesday, September 24th. According to Dr. Karmali, Chris may not need to spend 28 days in Illinois after receiving his T-cells. She is confident that the 14 day outpatient period can be done here in Milwaukee, under the supervision of Dr. Shah because Froedtert is a CAR-T cell therapy center as well, and any treatment Chris may need could be done there. Obviously, this is not confirmed, but it would be the best case scenario if Chris had to be treated at Northwestern. In the meanti
WEDNESDAY, SEPTEMBER 11th, 2019 Lots of phone call today, but finally some progress being made. I spoke to our insurance coordinator today and the agreement is now back being reviewed by our insurance. It seems like these negotiations could go on forever, and no one knows if there's an end in sight. On Monday, Dr. Shah mentioned potentially sending Chris to Northwestern Hospital or University of Chicago for CAR-T if things would move faster for him that way. According to our care coordinator, our insurance has contracts with both of those hospitals and they believe the negotiations would be less complicated there. I emailed Dr. Shah today with all of this information and he immediately called Chris. He said that he thinks we should give Froedtert until Friday to get the letter of agreement signed. If Froedtert and our insurance can't come to an agreement by Friday or get Chris scheduled for apheresis sometime next week he will send us to Northwestern. Dr. Shah h
TUESDAY, SEPTEMBER 10th, 2019 So Chris received some encouraging news today. Yesterday, Chris had a stat LP to check his CSF for lymphoma and also deliver a dose of intrathecal chemotherapy. Additionally, he also had a stat CT scan to check for more areas of lymphoma because of his increased left abdominal, left hip, and left knee pain. Today, Dr. Shah came to see us during Chris's chemo and shared with us that his CSF was negative for lymphoma. Additionally, Chris's CT scan showed that the lymphoma in the abdominal area actually appeared necrotic from the radiation and was shrinking in size. While Chris does have a few small areas of lymphoma in his left abdominal area, it would appear that his pain was actually the result of a large area of inflammation in that region; likely, a result of the radiation Chris received. Chris was started on dexamethasone (a steroid) yesterday to help with the inflammation and has experienced very minimal pain since taking it. Unfortu
SUNDAY SEPTEMBER 8th, 2019 Unfortunately, this week has continued to be a bit difficult for Chris. After leaving the hospital on Thursday, we thought Chris's confusion was a transient event likely caused by the meds he was taking. Unfortunately, Chris experienced another round of confusion Thursday evening. Since we did not have a clear diagnosis of the cause, Chris decided to message his physician about the episode. His confusion lasted in some capacity the remainder of the evening, and even into the next morning. On Friday afternoon, Dr. Shah called Chris regarding the message he had sent. He was concerned that Chris may have lymphoma in his brain, as confusion is not a side effect of the Revlimid, and he did not believe it was the Oxy he was on. Dr. Shah ordered a stat brain MRI for Chris on Friday evening. Chris received the results of the MRI on Saturday afternoon, which showed a lesion half a centimeter in size on the dura surrounding Chris's brain, which wa
THURSDAY, SEPTEMBER 5th, 2019 Chris has been taking his extended release Oxycontin and immediate release Oxycodone regularly to manage his abdominal pain. He began Revlimid on Saturday night, and the combo of the oxys, Revlimid, and radiation therapy seem to be managing his pain. Yesterday (Wednesday) evening, Chris and I were watching a show when he began feeling nausea. He had a bout of vomiting, which was followed by an abrupt spell of confusion and aphasia. This confusion began around 10 pm, and continued for 30 minutes. I decided to call the phone number for the triage nurse at Froedtert Hospital just to make sure that what Chris was experiencing was a side-effect of the drug and not the result of a TIA. (Blood clot is a side effect of Revlimid, which is why I was concerned.) The triage nurse finally got back to us around 11:30 pm, stating that the on-call physician thought the confusion was a side effect of the oxy. At that time, however, Chris was feeling extremely un