Brentuximab | Brentuximab Chemo 2018 | Cancer-- Non-Hodgkin's Lymphoma

Cancer Update 06-30-2018

July 3, 2018

May 22, 2018 Tuesday

The other day I thought of one more thing I look forward to in heaven: eating because I want to eat and because food is good. My appetite is such that eating mostly feels like a chore. I know I have to eat to keep my strength up and my muscles from getting weaker, so I force myself to eat. I also have to eat often, as I can’t eat much at one time, so I feel like I’m eating all the time. Some days, depending on what I’m doing that day, I’m eating every hour or two. That means every hour or so I have to give my stomach a stern talking to and eat something, whether I like it or not. There is a reason why God gave us taste buds and an appetite so eating can be pleasurable. Without it, it’s hard to sustain life.

So far, I’m winning the calorie battle, even with the extra activities of the past month. Last week at the doctor, my weight was the same as it’s been, which is my goal: maintain my weight at its current level. That means eating often and forcing myself to eat is working. One complication to getting enough calories is my chronically dry mouth. Not enough saliva means that dry foods are nearly impossible to eat. Most crackers, breads, and nuts, even peanut butter, are too dry to eat. Cheeses and meats are often too dry too, though if I drown cooked meats in ketchup or barbecue sauce, it helps.

My chronic dry mouth cuts down on the variety of foods I can enjoy, which doesn’t help the whole “forcing myself to eat” when I’ve eaten the same snacks 5 days in a row. Mom and I have been trying to find some variety this week: foods that appeal to me and aren’t too dry to eat. Coming into summer does mean I have a greater variety of fresh foods, and I’m enjoying those, such as asparagus or the first early strawberries from farther south.

Today, I re-read a few of my updates from last fall. I forgot how sick I was before starting Brentuximab. Originally, I thought Mr. Brent didn’t do that much for my cancer symptoms. However, it did more than I thought as I don’t feel nearly as ill now as I did then. It probably helps that I’m also 15 months past transplant now, so I’ve had longer to recover from the side effects of the transplant. I’m grateful for every piece of “normal” I have.

June 28, 2018 Thursday

I’m writing this while waiting at Hershey between my various appointments today. It’s been a while since I sent out one of these. My last month has been a lot of ups and downs, good days and bad days. I still have bronchitis lingering as the after effects of my sinus infection last month. I’m not coughing terribly, but I do have to take more cough medication more often to keep it controlled. The worst are the mornings until I get breakfast eaten and take my first cough medication for the day.

What have I done this past month? Living, I guess. The daily bits of life take most of my time. I’ve had a few outings. I went to Longwood Gardens with my brother’s family one weekend and visited the New Jersey shore one day. On Father’s Day weekend, my brother Kevin and I took in an airshow in Ocean City and visited Assateague Island National Seashore. I enjoyed both, but it exhausted me terribly. After that weekend, I decided I’m going to stay closer to home for the rest of the summer. I’m just too tired. I think my fatigue is getting worse, and I’m blaming it on Mr. Brent because fatigue is one of his main side effects.

The CT scan on June 7 was good news. The report read: “Mediastinal mass is stable.” That means that there has been no new growth since the CT scan in January. The report also indicated increased cavitation (holes) in the mass, which indicates it is continuing to break down because of Mr. Brent. We were all pleased to hear that report.

My neuropathy is getting progressively worse. You know how your toes feel when you’ve been out sledding or skating too long in 15-degree weather? That’s how mine feel, like lumps of wood on the end of my feet. They tingle a little, but mainly they are just numb. The ball of my foot is also completely numb. The rest of my foot is a bit better. I can get small cuts on my foot and not know it. I’m going to have to keep an observant eye on my feet for that reason. Thankfully, I have just enough sensation I can sense the foot pedals in my car and still drive.

Standing, walking, and balance are more difficult. Maintaining our balance is actually a complicated process with our brain taking in different types of information and sending out certain information to our muscles so we stay upright. One type of information the brain processes is the sensory input from our feet. Is the ground smooth? Soft? Hard? Uneven? As we walk, our feet send signals to our brain about what they are feeling, and the rest of the body compensates to maintain our balance.

Since I can’t feel where I place my feet, I need to use my eyes instead to gauge what the ground or flooring is like. If I don’t pay attention, I stumble over small cracks in pavement or even on my carpet. Because my feet are numb, I can’t gauge as well how far I need to pick up my feet to avoid stumbling. So if I walk past you sometime staring at the ground, it’s not because I’m ignoring you. It’s because I need to watch where I’m walking.

My hands are getting progressively worse as well. My fingers are mostly numb. My palm has a bit more feeling. I’m more careful to use potholders when cooking because I can no longer sense how hot something actually is. Fine motor skills are harder and harder, and my hands are progressively weaker. Now, to start my car, I have to throw my whole arm into the motion rather than just twisting the key with my hand. Opening packages or bottles is difficult as well.

Today would have been my next scheduled treatment for Mr. Brent. The only way to stop the neuropathy from worsening is to stop Mr. Brent. So, we are stopping the treatments in hopes the neuropathy will improve on its own. So, no treatment today! Instead, I simply had blood work and a doctor visit. Dr. Rybka said that, generally, neuropathy caused by Brentuximab reverses on its own once treatment has stopped. That is what we are hoping will happen.

Stopping Mr. Brent means I will no longer have active treatments targeting the lymphoma. In Dr. Rybka’s words, we will “coast” for a while and see how much time elapses before I have progression (the mass gets larger). Hopefully, it won’t progress at all! If the neuropathy improves now that I’ve stopped the treatments, we will be able to use Mr. Brent again if the mass shows progression a few months down the road. If the neuropathy doesn’t improve, and the lymphoma progresses, then we will need to find another treatment to hold beastie (my lymphoma) at bay, as more of Mr. Brent would simply increase the neuropathy.

Once again, in my doctor’s words, we are “scraping the bottom of the barrel” for available treatments for me since I’ve had so many over the past 6 years. I asked about Keytruda, an immunotherapy recently approved for primary mediastinal B cell lymphoma. However, it’s a PD-1 inhibitor, the same type as the Nivolumab I had the first half of 2016. Nivolumab failed for me after about 6 months of treatment, so using another PD-1 inhibitor won’t have any more success. He talked briefly about finding a PD-L1 inhibitor (a type of immunotherapy), which is something we haven’t tried yet. (Yes, I do understand what PD-1 and PD-L1 mean. It just feels too complicated to try to explain it in this email. Research it yourself if you are curious.) He said he’d start actively looking for immunotherapy options in case my neuropathy doesn’t improve, and beastie misbehaves.

So, the way we left it was that I will monitor my cough, shortness of breath, and neuropathy and let him know if anything changes. Because he will be in and out of the office quite a bit in the next two months, my next labs and doctor appointment aren’t scheduled until August 30. We will repeat the CT scan then too to see if beastie is still behaving. Otherwise, as long as my cough doesn’t worsen till then, we will assume that the lymphoma is still under control.

How do I feel about stopping the Brentuximab? Pretty good, actually. The ever-worsening neuropathy and fatigue are not pleasant. I really don’t want the neuropathy to become permanent, which can happen if the nerves are damaged too severely to heal. It will also be nice to not have treatments for a bit.

Another ailment the doctor and I addressed today is my stiff and hurting joints, specifically both knees and my right hip. I can’t go up and down stairs normally anymore. I have to do them sort of sideways and step slowly down, bringing each foot onto the same step before going down another. My knees are too stiff to bend properly, especially the right one, and my whole right leg hurts and aches and throbs and pulls. Walking scares me a little because I feel constantly like my legs are going to give out under me. Originally, I thought they were this way because I’m not getting enough exercise, but exercise doesn’t help. It actually makes it worse! Today was the worst day so far. I’d say the pain was about a 5 most of the day, sometimes hitting a 6.

When I told Dr. Rybka about my joints, he ordered x-rays for both knees and the right hip to rule out avascular necrosis (AVN), also called osteonecrosis. If you know that “avascular” refers to blood vessels, “osteo” to bone, and “necrosis” to death, you get the picture. It can be a side effect of high dose or long-term steroid use. The blood vessels supplying the joints die, which in turn means the bone dies because it has no blood supply to it.

Basically, the joint and the bone surrounding it collapse and disintegrate over time. There is no cure for it and no way to stop it from getting worse aside from knee or hip replacements that also replace the necrotic bone around the joint. They don’t know what actually causes the necrosis; they just know it can be a side effect of steroids. Anyway, I really, really don’t want AVN.


I just got home a bit ago and logged onto my PennState Hershey patient portal to check the x-ray results. The x-rays are negative for AVN. That technically should be good news, but in its early stages, AVN doesn’t show on x-rays. A CT scan or MRI is required to totally rule it out. I’m not sure why my doctor will say regarding this, if he will want to test further or just wait it out and see if my symptoms worsen. Since there is no cure or even treatment for it aside from surgery, waiting to see what happens won’t have a detrimental effect aside from simply enduring pain for a while.

June 29, 2018 Friday

You know how I said I want to stay close to home the rest of this summer? Well, those plans fell through in a hurry! It looks like I might be going to Mexico! No, not for cancer treatment. For dental work. I have mouth and tooth pain, so I went to the dentist and discovered I have 17 cavities that need fillings and 2 teeth that need root canals and crowns! I knew that chemo, steroids, cough drops, and dry mouth all ruinthe teeth, so I figured I’d need some work done. I just wasn’t expecting THAT much! They quoted me a price of about $6,500, and that didn’t even include the root canals. Once I got back to my car after my dental visit, I burst into tears. $6,500?? Where is that going to come from?! I cried for a while and then started praying.

One thing led to another and 2 different people recommended a dentist in Tijuana, Mexico. They had a good experience, and it went well for them. Even with airfare and lodging, the price that the dentist in Mexico quoted me is about ½ of what I was quoted here. In addition, if I forego the root canals and simply have him pull those two teeth, the price will be much more reasonable.

Yesterday, I asked Dr. Rybka if it’s okay if I go to Mexico for dental work, citing the price difference and the good recommendations I received. He seemed amused but agreed that it should be fine and gave me a prescription of Amoxicillin, an antibiotic, to take an hour before each string of procedures. Basically, the point of the Amoxicillin is to protect me from any bacteria or infections. Even if I was getting the dental work here, I’d still be required to take the Amoxicillin simply as a precaution.

June 30, 2018 Saturday

Yesterday I purchased the tickets for our flights to and from San Diego, CA. We are flying out of Baltimore as tickets were quite a bit cheaper from Baltimore than any other cities here on the east coast. We will probably just park our car in the long-term parking lot. Both flights have about an hour layover. Mom is going along as my caregiver.

We fly to San Diego on Wednesday July 11. A shuttle bus from the dental clinic will pick us up at the airport and take us across the border to Tijuana, Mexico. There is lodging at the clinic for about $40 per night. The room will probably be like a mini apartment, with kitchen facilities. We can visit grocery stores in Tijuana to pick up food stuffs and hopefully do some sightseeing in between all my dental visits. The shuttle bus will take us back to San Diego. We fly home from San Diego on Thursday July 19.

We are flying United Airlines. I’ve already notified them that I will require wheelchair assistance in all airports as there is no way I can do all that walking in the terminals. I’ve also notified them that I will be on supplemental oxygen supplied by a portable oxygen concentrator (POC). My oxygen supply company wasn’t sure at first if they could promise a POC for me on those dates because all of their POC’s are currently checked out with other customers.

However, they did some checking and were 90% sure they’d have one available by my flight dates. So, I purchased our tickets a while, trusting the POC will be available when I need it. Once I have the POC, I need to notify United about the brand and model number to make sure it passes their approval. I will also need a signed physician’s letter regarding my need for oxygen. I’m holding my breath that everything works out…This is the first I’ve tried to get a POC for travel by air.

I’m only beginning to feel a spark of enthusiasm at the idea of traveling to Mexico. Honestly, at first, it just looked huge: oxygen issues, long days spent en route, so much dental work to get done…Normally, I love to travel, but all that on top of my neuropathy and fatigue just looks like more than I can handle right now. This whole last month has been difficult for me physically and emotionally….

The other aspect of this is the financial side of things. While I certainly can’t afford $6,500, I can’t afford half that amount either. I can’t even afford $200 of dental work or the travel to Mexico. I’ve been in discussion with my family, and they are agreeing to help out, but none of them can afford a lot either at this point. So, my family asked that I put a request in this email for donations to help with the dental costs and the travel to Mexico. I’ve estimated the costs to be about $3,500. My sister Elizabeth will be in charge of the donations and distributing the funds to the family as needed.

If you want to contribute, make a check payable to Elizabeth VanPelt. The memo line should read “Donation for Ellen’s dental.” Mail the check to 39189 State Route 558, Leetonia, OH 44431. If we raise more than $3,500, the extra funds will go to paying some other bills I have. Thank you in advance for any funds that you can contribute to this need.

June has been a challenge in trust for me. Will my neuropathy reverse once we stop treatment? Will the lymphoma stay under control without treatment and what will we do if it doesn’t? What about all my financial needs? Will a POC be available for my trip? It’s so hard just to rest and let go, to trust God knows all about it and will provide as He sees fit, and that He will be enough for whatever happens.

A few days ago, following a long hard night when the neuropathy and the fatigue and the questions and the worries all crashed in on me at once, I listened to this song and cried. God, I don’t follow You for Your gifts. I follow You because I love You. And, I love You because You first loved me. You are enough, and I choose to trust even when it doesn’t feel that way.

Even If

They say sometimes you win some,
Sometimes you lose some,
And right now, right now I’m losing bad.
I’ve stood on this stage night after night
Reminding the broken it’ll be alright,
But right now, oh right now I just can’t.

Chorus 1:
It’s easy to sing
When there’s nothing to bring me down,
But what will I say
When I’m held to the flame
Like I am right now?
I know You’re able and I know You can
Save through the fire with Your mighty hand.
But even if You don’t,
My hope is You alone.

They say it only takes a little faith
To move a mountain.
Well, that’s a good thing.
A little faith is all I have, right now.
But God, when You choose
To leave mountains unmovable,
Oh, give me the strength to be able to sing
It is well with my soul.

Chorus 2:
I know You’re able and I know You can
Save through the fire with Your mighty hand.
But even if You don’t,
My hope is You alone.
I know the sorrow, and I know the hurt
Would all go away if You’d just say the word,
But even if You don’t,
My hope is You alone.

You’ve been faithful; You’ve been good
All of my days.
Jesus, I will cling to You,
Come what may,

Chorus 3:
‘Cause I know You’re able, I know You can
Save through the fire with Your mighty hand,
But even if You don’t,
My hope is You alone.
I know the sorrow, I know the hurt
Would all go away if You’d just say the word,
But even if You don’t,
My hope is You alone.

It is well with my soul.
It is well, it is well with my soul.

Prayer Requests:

  1. For an available POC for my Mexico trip.
  2. For the necessary funds and donations to pay for the trip and the dental work.
  3. That the lymphoma would remain stable without treatment.
  4. That my neuropathy will improve.
  5. For safe travels and sufficient energy.

No matter what, God is still good. I choose to trust.


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