TUESDAY, OCTOBER 20TH, 2020 We had great news today! Chris had his one year since CAR-T PET scan and it showed no sign of lymphoma. Dr. Shah concluded that Chris is successfully in remission one year out from treatment; a big milestone in the lymphoma world! YAY! Dr. Shah is extremely encouraged and will monitor/check in with Chris every 4 months. Enjoying the happy news tonight!
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TUESDAY, JANUARY 28TH, 2020 Sorry for the delay everyone. We had been waiting a long time for the test results of the MRD blood test. The results came approximately 2 weeks after the initial projected date, so the wait was certainly a tough one, but it was worth it. Chris' test came back negative after examining over 650,000 blood cells. There was no evidence of a DNA sequence matching the original cancer detected. This means that there will be no bone marrow transplant right now, and the percentage of relapse is hopefully much smaller than previously anticipated. The plan now is to continue scans every three months and regular blood tests approximately every two weeks. We've been enjoying our time as a family since the news came in, and are hoping we've seen the last of this horrible disease. Thank you everyone for all of your support, thoughts and prayers! Love, The Berges
TUESDAY, DECEMBER 17th, 2019 Chris had his follow up PET scan today...and it showed that he is now in complete remission!! The two areas that previously showed small amounts of cancer activity now have no activity. There was only one lymph node in Chris's lung that was abnormal, but it was just inflamed. They believe it is a result of Chris having pneumonia. As a result, Chris was started on two new antibiotics today. Chris being in complete remission, although great news, puts us in a tough position. As is stands right now, Chris still has a 60% chance of relapsing within the next two years (40% chance that he's cured). So now the decision is whether or not Chris should get an allogeneic bone marrow transplant. Dr. Shah went over several scenarios with us to help us make a more informed decision: Patients who are in complete remission 60 days post CAR-T Cell Therapy have a 40% chance of being cured; leaving a 60% chance of relapse. ...
November 25th - Tables have turned.. sort of..
Hello all, this is Chris. I'm doing well, aside from a cold that won't go away and possible ear infection. Cancer wise though I have no pain and no changes I've noticed so we're happy about that, hoping it's a good sign for the next PETscan. The reason I'm writing however is not for an update on me, but rather for Veronica. We went to the ER today around noon because she was having stomach pains for the last week or so. After some tests and a CT, we found out she had appendicitis! It was weird being in such a familiar setting as the hospital but not in the bed... She just had surgery and everything went well. I spoke with the surgeon and she said the appendix was very swollen but removed just fine and thankfully not burst yet. Right now she's resting and we're working on pain management but she should be able to go home tomorrow with minimal restrictions. Just thought we'd let everyone know... This year can't end soon enough! Love to all, Chris ...
TUESDAY, NOVEMEBER 12th, 2019 Well, we have good news! Chris had his PET scan yesterday morning. We met with Dr. Shah this morning to get the results and overall, we had fantastic news: Chris's PET scan was almost completely clean! He only had a small area of activity in two lymph nodes. Dr. Shah called CAR-T a success. It is the first treatment that Chris has had that has put him so close to remission. Unfortunately, the fact that it was not completely clean puts us (and Dr. Shah) in a bit of a predicament. Dr. Shah explained that two things could happen from here: 1: The CAR-T cells could still be working and the remaining lymph nodes could convert, putting Chris into full and complete remission. 2: The activity in the lymph nodes could progress. If the remaining cancer is left to progress too much, getting Chris back to near remission could be extremely difficult. There is no way to predict what will happen. As a result, Dr. Shah is mak...
THHURSDAY, NOVEMBER 7th, 2019 Chris has been doing really well, overall, since being home. He is working on getting his strength back by walking and doing the stairs several times during the day. He has also been helping more with Stellan (who is quite a bit to handle these days). Chris has still had some difficulties adjusting to being home, which is to be expected after being in the hospital for so long; one of those difficulties has been trying to taper his pain meds safely and effectively so he has minimal side effects from withdrawals now that he no longer needs the meds. This process has gone pretty well, overall, but he has still been experiencing some minor side effects. Aside from that, Chris is pain free! He will have a PET scan to determine if he is in remission or not next Monday 11/11. It sounds like a bone marrow transplant might be on the table eventually, even if he is in remission, but we will cross that bridge after getting the PET results...
SUNDAY, OCTOBER 27th, 2019 Finally some great news to report! Chris will be coming home tomorrow; a month exactly from the day he went into the cancer clinic and was admitted into the hospital. Chris's chills and sweats are still occurring, but to a much smaller degree than previously. And although he has been experiencing these symptoms the last few days, he has not had a temperature above 100.4 (which is what the hospital considers a fever). Additionally, Chris's headaches seem to be manageable with just Tylenol. All of this, combined with the fact that his IV fluids were discontinued yesterday means there is no real reason to keep Chris in the hospital anymore! Although we are both a little anxious about Chris coming home after being in the hospital for such an extended period, we are all so incredibly happy that it is finally happening. V
THURSDAY, OCTOBER 24th, 2019 The last few days have been a bit of a mental roller coaster. Chris's confusion has been in and out with his change in temperature. His headache and left leg pain have been pretty significant as well. Dr. Shah ordered a spinal MRI on Tuesday to make sure everything was still ok in regards to the lesions that were previously compressing his spinal cord (thinking that that may be what was causing his leg pain). The good news is that the lesions appeared smaller than they were on the previous MRI and there were no new lesions to report along the spine. Dr. Shah believes the pain (and the radiation burn) could all be the result of a phenomenon called radiation recall. https://www.texasoncology.com/cancer-treatment/side-effects-of-cancer-treatment/less-common-side-effects/skin-reactions/radiation-recall Chris was fever free from late Tuesday evening until yesterday night. We were optimistic that this may be the end of t...
SUNDAY, OCTOBER 20th, 2019 Chris has had several temperature spikes the last few days. The nurses have been giving him tylenol to help regulate the fevers, but his headache seems to be exacerbated by the fever. Today, after taking a shower, Chris also started experiencing chills and confusion. He couldn't find the answers when asked questions, or was using the wrong words in sentences. All of this is to be expected with CAR-T, but it doesn't make it any less stressful or frustrating for Chris. Unfortunately, we won't know how long the confusion will last, or if it will get any worse. I will continue to update as things occur. V
FRIDAY, OCTOBER 18th, 2019 Not a ton to update on so far. Chris has experienced minimal side effects so far to the CAR-T therapy. He just spiked a temperature of 100.4 this evening; as a result, he had blood cultures taken and a chest x-ray. Chris's headache is still lingering, and he was put on a pca pump of Dilaudid. Additionally, it looks like he has a radiation burn on his lower back from the lumbar radiation. There's not much that can be done for a radiation burn except for giving it time to heal and cream. That's all I have for now. Thanks for the continued love and support. V
TUESDAY, OCTOBER 15th, 2019 Today is the day we have been waiting for! Chris received his T-cells today. It was pretty anti-climatic, to be honest. He received Tylenol and Benedryl Tan hour before getting his T-cells, but getting his cells back only took about ten minutes. So far, we have not seen any side effects from the CAR-T. The biggest issue Chris has been having the last few days has been a severe headache. He ended up getting a brain MRI yesterday, and it showed that the lesion Chris has on his dura has actually shrunk; however, there is some swelling going on which is causing the headache. Unfortunately, the best remedy for the swelling would be steroids, but that is contraindicated with the CAR-T therapy. So, they are trying to manage his pain with some dilaudid. It's not great, but it at least takes the edge off. That's all I have for now, but I will update with any developments that happen....
THURSDAY, OCTOBER 10th, 2019 Chris has been doing better the last few days. He no longer has pain in his upper or lower back thanks to the radiation. The only issue he is currently dealing with is weakness in his left leg. Both of his legs are weaker, just from lack of use as a result of being in the hospital for a week and a half; and his left leg is even a bit weaker than the right leg because of the lesion compressing his lumbar spine. Chris has been seen by a physical therapist everyday to work on strengthening and stretching his legs. We've also been trying to take some walks to get Chris out of his hospital room and strengthen his legs. Additionally, we received an email from Dr. Shah letting us know that Chris's T-cells were being shipped today and should arrive at Froedtert on Friday. Chris will be starting day one of his pre-CAR-T chemo today since everything looks good and on time. He will get chemo Thursday, Friday, and Saturday....
SATURDAY, OCTOBER 5th, 2019 I don't have a big update for today, other than Chris is doing well. He has been walking more, and the strength in his left leg has been improving. He is still dealing with some pain in his back, bit we're hoping it will be resolved shortly. The real reason I wanted to post tonight, was to share a podcast I found that shares information about leukemia and lymphoma. The podcast is on Spotify and is called The Bloodline. It's a podcast put on by the Leukemia Lymphoma Society. Some of the podcasts are a bit cheesey, but they have good information. Here's one I like regarding CAR-T therapy: https://open.spotify.com/episode/5BeEZBbzl1SvmuaAZyYBbV?si=PYsotlwhSJ-2y5w0LgxcMg V
SATURDAY, OCTOBER 5th, 2019 Yesterday was a good day. We were able to celebrate Stellan's actual birthday at the hospital with Chris, which was so great. Chris's lumbar puncture resulted as negative for any lymphoma in the CSF! This was such good news. Unfortunately, Chris will have to remain as an inpatient until after receiving his CAR-T treatment. With how aggressive his cancer is, Dr. Shah is moving up his treatment to as soon as possible; so once Chris's T-cells are shipped back to Froedtert (they believe this will be October 10th) Chris will begin the pre-therapy chemo (October 10th - 12th). After receiving the chemo he will have two days to rest and will receive his T-cells on Tuesday October 15th if everything goes as planned. After this he will remain in the hospital for another 10-14 days minimum while they monitor him for side effects with the therapy. In the meantime, Chris has begun receiving radiation to his lumbar spine, which we hope will begin to...
WEDNESDAY, OCTOBER 2nd, 2019 Chris was back to his normal self today, but just a little bit more fatigued. He had a lumbar puncture this morning and was given intrathecal chemo prophylactically. The results should be back tomorrow. He was able to get his EEG patches off this evening after there were no additional signs of seizure to report. It took about 90 minutes to get all of the glue off his head. Chris will likely stay on an anti-seizure medication for the foreseeable future just in case. The tumor board (consisting of oncologists, radiologists, neurologists, surgeons, etc) at Froedtert reviewed Chris's case and determined that radiation or surgery on the lesions around his brain we're not necessary. He started an oral chemo med tonight that will hopefully keep his lymphoma more stable; that combined with the radiation will hopefully be enough to bridge Chris to his CAR-T therapy. If not, Dr. Shah will re-evaluate. Chris's pain seems to be pretty manageable....
TUESDAY, OCTOBER 1st, 2019 Today was an extremely.....busy day. I received a call this morning from the nurse practitioner taking care of Chris saying that Chris had a confusion this morning, but more severe than he had experienced in the past. He was unable to remember where he was, what year it was, etc. They took him to get a STAT CT, which ended up coming back normal. By the time I was able to get to the hospital, Chris was back to normal. After speaking more in depth with the morning nurse, I learned had Chris had actually had a seizure in the morning, and the overnight nurse had heard a noise from outside and came in to find him incoherent and shaking. In addition to the CT, they also performed a brain MRI and began monitoring his brain activity via EEG to see if they could determine the area of the brain that caused the seizure. Because Chris needed all of the neurological testing this morning, he missed his first of two radiation oncology ap...
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
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...