Chazzkin's Lymphoma

Hi all, Charles received treatment #4 yesterday. His absolute neutrophils count (white blood cells that are the first line of defense for the immune system) was a bit low, but the doctor approved the treatment. He may need an extra shot with the next treatment to spur his bone marrow to produce more neutrophils. He felt a "little woozy" during the treatment, but for the most part is doing well.  We had our first class for 2nd year confirmation this morning and he was able to teach, so he is doing well. I ask that you continue to pray for him, especially this week as he endures prednisone over the next 4 days. Tracy

Hi all, Charles had an appointment with the oncologist this afternoon. She confirmed the PET scan results looked good and the treatment is working. We questioned whether Charles needed the additional treatments and she said the regimen is 6 treatments. The mid-treatment PET is to determine if adjustments to the treatment are needed. There are no data to show that the additional treatments are NOT needed. If Charles felt strongly about discontinuing treatment she was open to the discussion, but Charles said, "I feel strongly about following the data." Therefore 3 treatments are in order, starting tomorrow. All is good and it will be a few more months before he can start regrowing his hair. Tracy

Charles had his mid-treatment PET Scan today to see if the treatment is working or if they need to adjust. The radiology report came back within a few hours and it looks like the treatment is working just fine. The summary from the radiologist: "IMPRESSION: 1. Specific evidence for metabolically active neoplasm is not present. 2. Compared with prior PET/CT dated 6/8/2023, previously identified focal abnormal accumulations involving right subpectoral node and 2 right lower quadrant ileocolic lymph nodes are no longer appreciated." We have an appointment with the oncologist on Friday afternoon and we have a few questions for her, but feeling good about this news! Thank you all for your prayers! They are working!

  We all have a lot to worry and pray about and if you are like me, you need to know how best to prioritize your anxieties and intentions.  So I hope you'll appreciate this new feature where I bring data analytics* to bear on my health and you, family and friends, can check on my up-to-the-minute odds of surviving to the year 2028:  Charles' Five Year Chances !   *Note that Charles' survival probability is hand calculated by Charles himself.

Welcome to the new, hopefully easier to use place to track my innards!  I realize if you're reading this you probably already had to register at Caring Bridge, which was annoying.  That site was always asking for donations (I hope you didn't give any) and was a pain in the neck for Tracy.  Hopefully this is easier to read too.  You can supposedly comment here without having to sign in with Google but it may depend on your browser. Now the update:   Since it's always a good idea to put private information on the internet - especially personal medical information- I thought I would make Status Cards the various cancer-wads in my torso in preparation for my next PET scan on Monday, September 11.  These are a summary of things that have shown up on ultrasound, CT, or PET scans.  So now when I get the updated results following 3 treatments of chemo, we can all do a before-and-after inventory. -- Charles

Hi all, We are at the halfway point for treatment. Yay! Charles was not looking forward to today's treatment and the following 5 days because of the prednisone which causes lots of water weight, sleeplessness, and crazy appetite. He is mentally and physically strong so he will power through. His eyebrows on the other hand are losing their strength. They are noticeably thinner. We'll see how much longer they can hold out. First drug just started. We'll check in later. Tracy

Hi all, Charles is continuing to do well with his treatment. His next follow-up appointment is Friday afternoon (while I am getting Lasik on my eyes). As far as side effects go there is really nothing to report, but as you might of guessed hats are becoming a more important feature of his wardrobe. Shout out to Andy and Laura for his latest go-to hood ornament. Tracy Summer sports / sailing Yard work / swim dad look Camping / winter sports / grunge look Church / work / everyday fashion look

Hi all,Charles seems to be tolerating treatment #2 well. A few hiccups the first day, but nothing like the first treatment. He has figured out a stretch that prevents them from happening. He does seems to have a bit more fatigue. He has energy in the morning, but it falls off by the afternoon and he usually takes a nap. He still has enough energy to exercise, so that is good. Especially since the prednisone makes him hungry and he has weird cravings. Today is the last dose of that though. Overall, doing well. Tracy

Hi all, Today was treatment #2. Charles had his blood drawn at 8:30am and then we went to breakfast at Caroline's Seaside Cafe. There were lots of surfers in the water today. His blood counts looked good. His infusion was scheduled for 10:30am so we headed back to UCSD around 10. We didn't get called back to the infusion room until 10:50 or so, but we got a coveted window seat again, so that is a plus. We came prepared today with snacks and drinks. Mark made Charles a playlist on Spotify and let him borrow his over the ear headphones. The pre-medications take about 45min and then 3hrs for the first infusion. Then the nurse pushes the red juice over 15min, 10 mins for the next infusion and the last one takes an hour. So 6hrs total for infusions today. Hopefully, this treatment is as smooth as the first with respect to side effects. Tracy

Hi all, It is amazing how quickly things can change. The slightest breeze or brush of the hand led to noticeable amounts of hair falling out around the house and there was thinning in certain areas. Charles decided this morning that today was the day to shave his head. He decided to go to his regular barber, Kirk, for a professional job. A little sun to even out his skin tone is all that is needed. I offered to shave my head in solidarity but Charles strongly insisted that wasn't necessary. Video here .

  Hi all, Good news--doesn't look like he has avascular necrosis of the humerus according to the x-rays taken today.  The pain he has in his right arm is likely muscle related and not bone related. We also learned that the numbness he has on the back of his right arm since surgery could last up to 8 months. Nerves take a long time to heal. Tracy

Hi all, Charles met with his oncologist on Tuesday as a follow up to COVID and to see how he tolerated his first treatment. It was a short televisit to verify he recovered from COVID and make sure he didn't have any major side effects from the chemo. He also got a referral to orthopedics for the avascular necrosis seen on his CT scan. He has an appointment on Monday for that. On another note, his hair loss is a bit more accelerated. No obvious bald spots, but he is shedding as badly as the dog and will likely shave his head this weekend. Of course, I will share pictures when that happens. Tracy

Hi all, Charles' hair has started to fall out, especially if he grabs a tuft near the crown. His beard hair was also starting to fall out, so he shaved it off today. Otherwise, he is feeling pretty good. He felt good enough to drive to work yesterday and plans to go in tomorrow. Next treatment will be on Aug. 5. Tracy

Hi all,Charles had a fever on Sunday night and again yesterday. He called his oncologist and they referred him to infectious disease to treat his COVID. Starting this afternoon he will get three doses (1 infusion each day for three days) of Remdesivir. It will be administered through his port. This will help his immune system stop the virus from replicating. Interestingly, there are only 2 doses of this med available each day at the clinic and they are reserved for chemo patients and kidney patients. Tracy

Hi all, Charles felt good today, so after Mass we headed to Torrey Pines. There have been sharks sited there recently. We hiked to Yucca Point and saw multiple sharks in the water below. After 45 minutes or so we hiked to the beach to cool off and have a picnic. Charles noticed a mouth sore during lunch, but it is not too bad. Today is the first day since the chemo that he didn't have to take prednisone, which has cause him some sleeping problems. He is looking forward to a good night's sleep. Tracy

Charles woke up not feeling well and it turns out the flu-like symptoms were from something flu-like. He doesn't have a fever, just congestion and mild headache. Needless to say, I will be monitoring him closely. Tracy

Hi all, Just a quick update to let you know Charles is doing well and there have been no major side effects so far. He does have fatigue and starting the first night he had the hiccups pretty much all night and into the next day. They were intermittent yesterday and he hasn't had any today. Tomorrow is the last day of prednisone for this cycle and some people experience a "crash" once that is finished so we'll see what happens. We are also expecting that 7-10 days post treatment is when his blood counts will be low and he might experience some effects from that such as chills. I'll try to keep you posted, but now it is time for the Friday night movie in the Negus household. Hopefully, Gordon will make popcorn... Tracy

  We are back home after a full day at UCSD. Last 2 drugs went pretty quickly and Kristen was a great nurse. Now we wait to see how Charles feels. Will he have nausea, fatigue, etc? They gave him 2 different meds for nausea so I think he will be ok. Here are some pictures from today. They wouldn't upload earlier. Next appointment is 28 July with the oncologist. Next chemo round is 1 Aug. It should be a 4hr day vs today at 8hrs. Thank you all for all of your prayers! Tracy

Hi all,We are 5hrs into the first treatment and all is going well so far. First he received pre-meds to prevent a reaction to the first chemo drug and some anti-nausea meds. The first chemo infusion took a little over 3hrs and he didn't have any signs of a reaction. The nurse is "pushing" the second drug over 30 minutes. Hopefully all continues to go well. This 2nd drug is the one that usually causes nausea...

Hi all, We just got home from having the port placed. The procedure itself was about 40 minutes and Charles was awake and lucid during the whole thing. The nurses were very surprised by that. The port is made of titanium and hard to the touch. Charles is excited that it can be used for blood draws. No more pokes in the arms. No strenuous exercise, weightlifting, or swimming for the next 2 weeks. First chemo infusion is scheduled for 11 July. Tracy PS I forgot mention earlier that Charles received the Anointing of the Sick yesterday from Fr. Anthony.

Hi all, Echo results show the ventricular size and function of Charles' heart is normal. Yay! Ready for port placement tomorrow. Tracy

Hi all, Finally got the Chest CT scan results today. It confirmed the enlarged nodes in the collarbone area. It also noted a nodule on the lung, but they can't be sure if that is residual infection, lymphoma or something else. If it is lymphoma the chemo should take care of it. Echocardiogram was also completed today. Should have those results in the next 2 days. This is to make sure his heart is strong enough to handle the chemo treatment. The port will be placed on Thursday afternoon. The chemo treatment order was placed by the doctor today and the infusion center will call to set up the date for the first infusion. We are expecting that to start within the next 2 weeks or so. A PET scan will be done after the 3rd treatment (late Aug timeframe) to see if the treatment is effective. So, really no new news from today's appointment, just confirmation that chemo is needed to treat this. Tracy

Neck CT results came back with boring news. No abnormal lymph nodes. Yay! Still waiting for the results for the chest CT...

Hi all, Charles had a CT scan with contrast last night at 10pm (well past my bedtime). My understanding is that this was as a follow up to the PET scan to see if they could see any other nodes that didn't show up well on the PET scan and to make sure we have a good image and measurements of all the abnormal nodes so when they do a scan to see if treatment is effective, they have a good baseline for comparison. Results for the abdomen and pelvis came back earlier today and confirmed what the PET scan showed--There are 2 mildly enlarged FDG avid lymph nodes medial to the cecum, measuring 1.1 and 1.5 cm in short axis. No other enlarged lymph nodes. We are still waiting for the results of the scan for the chest and lungs. We'll share those when we get them. Tracy

Hi all, I plan to use this site to keep everyone updated on things happening with Charles. For starters, I thought a timeline of events might be of interest to some folks to get you up to speed. So here it is: February 2023- Charles noticed an enlarged mass in right armpit March 22, 2023- Televisit with primary care for swollen lymph node. PCP noted it could just be because of a cold or viral infection. April 20, 2023- Ultrasound of armpit, radiologist requested a biopsy for later that day. April 20, 2023- Needle Biopsy of larger of two lymph nodes April 28, 2023- Biopsy results inconclusive, excisional biopsy recommended. May 3, 2023- Met with Surgeon to discuss lymph node excision--surgeon noted the lymph nodes didn't necessarily need to be removed, could wait and see if they get smaller. Surgery scheduled for 24 May. May 17, 2023- Ultrasound prior to lymph node removal. Results showed the axillary lymph node size was consistent with previous ultrasound and an additional abnorm...