Case Studies el pt

Jenny Tells the Forest Story

Date: April 23, 2024

by Jenny

Life Changes

Related Article: Forest Bump

FCR Lite

HuMax-CD20

Stem Cell Transplants

“ … you never know what you’re gonna get.”

Hello, my name is Jenny and I’m writing to tell you about Forest. If you didn’t know who Forest Bump was, please take a few moments to read his story in Forest Bump. Forest was diagnosed with CLL in September of 2024. He passed away on March 2, 2024 at the age of 52. Even though writing this is very hard for me, I have recorded here the sequence of the events that led up Forest’s death. Perhaps there is a message here.

If you have read Forest Bump’s story you’ll know that he went into the 'FCR Lite' clinical trial using Rituxan, fludarabine and cyclophosphamide. When Forest wrote his story he had just finished four of six treatment cycles. That was in February of 2024. He was feeling great. As required by the protocol a CAT/PET scan was done after the 4th treatment. The results that came back weren’t all that rosy. Even though his counts were returning to normal and all of the nodes seemed to have disappeared a few of the ones that were deep inside had gotten larger. This was not good news although no one ever came right out and said anything about this. I had always obtained copies of his blood work and any test results and so I did the same in this instance. I read the report and it made my heart stop.

“I wasn’t sure I wanted to fly off this bridge.”

Forest figured these bumps would go away just like the rest of them. After all, he had two more courses of treatment to take. He was feeling good and his running was back up to 54 minutes. Two months later he finished his treatments.

Then in early summer things started to look bad again. The nodes were growing and the blood work was getting worse. His hemoglobin and platelet levels just weren’t recovering. Every time we went back to the clinic we felt a silent message, “Oh, you poor dear.” Post trial testing didn’t come out very well either. Forest was released from the trial and was given a recommendation to have a mini allogeneic stem cell transplant. Forest felt so good he wasn’t going to have anything to do with this. To quote Forest, “Why would I go into the hospital for two months and have this done when there is no guarantee?” “We aren’t even sure they know what they are doing.” “I feel good.” So the decision was put on hold. We went to the mountains for a much needed vacation and fished to our heart’s content.

In September, Forest talked the doctor into another treatment plan. The way he looked at it, so many CLL patients had gone through 2, 3, or even 4 different kinds of treatments. Heck, he had only gone through “FCR Lite”. He was supposed to be the guy with the good prognosis. “FCR Lite” was the baby stuff. Surely there were a couple of other treatments out there that would give him another year or so before he had to make the leap into the stem cell dungeon. He figured “FCR Lite” was so easy … now bring on the real CLL killers. He wasn’t thinking cure, he was thinking time.

The next treatment plan started in October. He received pentostatin and cyclophosphamide. He did some homework and knew there had been some success in this area. Not much, but enough that perhaps it would work for him. I wasn’t happy about this, because I, too, had done my home work. I had become the allogenetic stem cell transplant warrior. Forest told me once that I should just get a t-shirt that read, “I Love Stem Cell Transplants.” I certainly understood his point. If you feel good, who in their right mind would go into the “Live or Die” chamber?

In November he had his second treatment with pentostatin and cyclophosphamide. His counts weren’t recovering, especially the platelets. In fact, they were dropping every week. This treatment wasn’t doing a dang thing to fight the CLL and so the doctor decided to discontinue it.

Right after Christmas we met with the transplant people. No warm and fuzzy feeling here. They talked the talk and answered our questions. When asked how many of these transplants they had done for CLL patients, the answer was … one. That particular patient was elderly and didn’t make it. In spite of this, Forest was able to muster some level of trust in the protocol. It was the same one as practiced at M. D. Anderson. However, he wasn’t ready to move forward even though his brother was a 10/10 match. He still believed that there had to be another treatment option available to him.

“HuMax” was on the horizon. (If you haven’t heard about HuMax-CD20 you might want to read A Smarter Monoclonal on Trial). A clinical trial was about to begin but the closest location recruiting was in Rhode Island. Our local clinic was also on the list but not recruiting yet. By now it was the end of January and I made the decision to do everything I could to get our clinic to start the trial. This was what Forest wanted. So, I pulled out all the stops, called the drug company and fought like a tigress protecting her young. Forest’s doctor agreed that he could enter the trial … but there were problems. His platelets were dropping; down to 17, then 13, then 9. He was neutropenic more often than not. He was in and out of the hospital in January and on into February. Let me tell you, these were difficult trips.

When Forest wasn’t in the hospital he was at the treatment center getting blood and platelets. Then, on the first of February he developed a red spot on his leg. It looked like a small bruise. At first he didn’t say anything about it because it wasn’t bothering him. Within a week it became larger and he showed it to the doctor at the treatment center. It looked like a hematoma (internal bleeding) possibly caused by the low platelets. With his wacky blood count the doctors were worried about an infection and so he was admitted to the hospital again. At this time no infection was found and the leg didn’t seem to be getting any worse. He was released three days later but within ten days (February 26) his leg had gotten a lot worse. So it was back into the hospital, and folks this is the hard part … the whole leg was swelling. It was turning purple, splitting and oozing. He could hardly walk, but the hospital wasn’t doing much about the leg. “Take these pain pills and keep it elevated.” The experts were brought in: the disease specialist, the orthopedic specialist, and the what nots. There was a lot of head scratching going on and the PET scan didn’t give many clues.

… Since I’m still left guessing I’m going to step out of the box for a moment and give you my opinion. I’m certainly not a medical expert by any means, so please don’t take this as gospel. I’m guessing here. The bad leg could have started as a hematoma then progressed into lymphoedema. It’s not that the two go together or that one necessarily leads to the other, but in dealing with CLL things are different. Remember, as patients we’re not playing with a full deck here. Lymphoedema is swelling that results from an abnormal collection of fluid (called lymph) in the body tissues. It can occur when part of the lymphatic drainage system is damaged. If a hematoma (an internal bleed) is present, then I would imagine something’s going to kick in and juices are going to start flowing. Once these juices get flowing, they have to drain. If there is a blockage or a backed up drainage system there can be big trouble. I suppose it’s also possible that the switch responsible for turning off the juice can break. Either way something’s plugged and an enema isn’t going to help …

To continue, the clinical trial was ready for kick off but according to our wonderful insurance company a person can’t be in two places at one time. For example, an individual can’t be admitted into the hospital AND be at the cancer center having clinical trial pre-approval testing done on the same day. Who would they bill? This can’t even be done when the buildings are connected! The only way to get the HuMax-CD20 was to be discharged from the hospital. And incidentally, it’s pretty hard, if not impossible to begin a clinical trial if you are in the hospital. For the drug companies this would be like starting a race with a three-legged horse.

It was Tuesday February 27th and Forest still had to get the pre-approval testing done for the trial; PET/CAT scan, blood work, heart check and all the other little things they put you through. The leg wasn’t getting better, but he knew if he didn’t get out of the hospital he wouldn’t be able to start taking the HuMax. He figured that if he didn’t take some type of treatment the lymph nodes wouldn’t shrink and let this fluid out. And then somehow and I don’t know how, he talked the doctor into discharging him. I brought him home Tuesday night and the next day he signed up for the HuMax trial and went through all the testing. That was a very long day. As the day wore on he got worse. I called home and had our family set up a bed in the living room, because by now it would be impossible for him to walk up the steps to his room. A day and a half later, on Friday at 5:00 in the morning we called the ambulance. The pain level was terrible and Forest wasn’t breathing very well. The ER personnel weren’t in a big hurry to help him. They really didn’t have a clue about what to do; I didn’t have much of a clue either. They tried to draw blood but couldn’t. Then there was a shift change and paper work had to be done before the next shift could take over. During this time I sat with him and cried. They finally gave him a shot for the pain which put him out for an hour. This was the first rest he had had in weeks. When he awoke I told them he was in distress again and they gave him another shot. That’s when he went into respiratory failure. He passed away in the ER at 8:00 in the morning.

Forest wasn’t much for hospitals. As a matter of fact, until January of this year he had never stayed overnight in a hospital . He didn’t like them at all. To him it was like being locked up. He loved the Lord, the great outdoors, his garden, his dog, his yard, his three wonderful kids, and his two granddaughters. And … he never once gave up hope.

In closing, let me say that I don’t blame anyone for the outcome; it’s the “box of chocolates we got”. “Things happen.” Decisions concerning treatments for CLL are very tough. There are times when I think of all the “what ifs”. When I was feeling sorry for myself and thinking I didn’t fight hard enough for the transplant, my oldest son said, “Mom, how would you have felt had Dad passed away right after the transplant was done and you were the one who talked him into it?”

We all have to make our own decisions. This was Forest’s decision. As a traveler on this journey I have only a few words of advice: if your oncologist is up on CLL, and you’ll know if he/she is because you’re reading stuff from this site and you should know enough to spot an expert, “keep your eye on the ball”. In other words pay attention. Remember, these people don’t have all the answers, they’re human too. They are not going to push you. An allogeneic stem cell transplant comes with no guarantees and they know it. They are not going to shove it down your throat. The choice is yours. One intern told me, “Jenny, sometimes we really don’t have a prognosis until after treatment.” That statement turned out to be very true.

" … and that's all I have to say about that".

Keeping On, missing Forest always,

Jenny
____

 

In memory of Forest and in thankfulness to Chaya, PC & Company for all the hard work that goes into this website, I would like to dedicate the following poem by Forest to all of you who have been diagnosed with Chronic Lymphocytic Leukemia.