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

Cancer Update 03.30.18

April 3, 2018

 March 10, 2018 Saturday

Finally, I’ve found a name for my lymphoma! You know my penchant for naming all things medical. I have long been in doubt as to what to call my lymphoma. Beast was too malevolent, Enemy too general, and Lymphy too cutesy. The other day, I stumbled across the word “beastie.” Instantly, I knew that this shall be my name for the lymphoma from henceforth.

“Beastie” is Scottish in origin. Official definition is “a small creature, especially one towards which affection is felt.” My lymphoma, while somewhat beastly in nature, really isn’t such a terrifying thing most of the time. He’s a beastie, who raises his head upon occasion, but has stayed remarkably well-behaved for the past six years aside from the pesky relapses every year or so. By now, we have cohabited so long I feel a wry affection for him by times. After all, if you can’t beat ‘em, join ‘em!

I think I have another kind of beast raising his head right now. Ever since Thursday, I have been incredibly itchy! It is incredibly annoying! I’m guessing that it might be skin GVHD. I’ve been on 2.5 mgs of Prednisone for a month now, long enough for my immune system to wake up if it so desires. Since the acute ocular GVHD in April, my immune system (well, my sister’s) has been hibernating like a lazy bear thanks to Prednisone. Now that we are backing off the immune suppression, I wonder if perhaps he is stretching himself rather lazily and sniffing the air. Suddenly, he sits up and exclaims, “Wait a minute! This isn’t my cave!” Is this itchiness his first growls? Perhaps.

A little GVHD isn’t a bad thing for me. In its mild stages, it has a graft-versus-lymphoma (GVL) effect. Remember, beastie came back last September, which means that some of my lymphoma B-cells survived the stem cell transplant. If GVHD wakes up, it could have the effect of killing off the lymphoma, which would be a fantastically fabulous thing. The challenge is to keep the bear leashed rather than letting him run berserk.

Often GVHD is accompanied by a rash. I can’t see any rash anywhere; I just have incredible itchiness. I itch all over, but it’s worst on my back, upper legs, and upper arms. So far, it’s not keeping me from sleeping. Spreading cream or lotion all over helps, but it doesn’t stop it.

March 19, 2018 Monday

My doctor is out of the country until the end of March, so today I saw the covering physician, Dr. Naik. She asked me questions and examined my skin, concluding that I have mild (grade 1) skin GVHD. I do have dry, scaly patches on my face and one on my hand. I wasn’t sure if those were just the results of dry skin or a sign of GVHD. They thought it looked like GVHD.

Oddly, my face and my hands aren’t itchy. They prescribed me a bunch of medications. Atarax, an antihistamine (think Benadryl). Methylprednisolone, a steroid (think Prednisone; it’s basically a higher dose version of Prednisone). Triamcinolone topical cream, a steroid cream. They told me to buy some hydrocortisone cream and Cetaphil soaps and lotions over-the-counter.

The methylprednisolone is basically an emergency steroid to be used only if I break out in a rash all over. The Atarax is for the itching as needed. The Triamcinolone cream is for any small rash spots on my body. The hydrocortisone cream is for the spots on my face. Cetaphil soaps and lotions are much easier on the skin and unscented, so they won’t irritate my skin like a lot of other brands. I’m grateful the GVHD is mild, so we don’t need to raise my Prednisone dosage significantly. I was dreading that.

They also told me to cover up thoroughly anytime I’m going to be exposed to bright sunlight for any length of time. Indeed, even a small amount of sunshine on a bright day can trigger a GVHD reaction on the skin.

I stepped on the scales the other day and nearly jumped for joy! My weight is finally back at its pre-transplant levels!! Yes!! I’ve finally lost all that extra weight from Prednisone and I can comfortably wear most of my clothes again. Gaining weight and not being able to stop it due to a medication isn’t much fun!

March 29, 2018 Thursday

These last few weeks haven’t been so great most of the time. Ever since I dropped to 2.5 mgs of Prednisone, I’ve been experiencing loss of appetite and nausea. My stomach gets empty and I want to eat, but I start eating and immediately feel nauseous, like I could just vomit. I was forcing myself to eat enough calories to function. The foods that I could handle the best were more junk and snack foods, like sweets, granola bars, cheese, yogurt, chips, etc. I also started taking anti-nausea medication again. At first, I thought it was just a matter of my body adjusting to the lower dosage. However, it didn’t get better; it got worse.

I realized it was probably mild GVHD in my intestinal tract, so I asked the doctor’s permission to raise my Prednisone back to 5 mgs. They agreed, and I’ve been at 5 mgs now for a week. It’s going much better. I still can’t eat normal quantities at one sitting, but the constant, nauseous feeling is much less. I no longer feel like puking the instant I sit down to eat. It’s getting more enjoyable to eat again. I’ve started eating more often to ensure I get enough calories. To remind me to eat, I’ve set alarms on my phone, and that helps. I think it’s going the right direction.

The minor skin GVHD is under control. I’m no longer so incredibly itchy all the time. I am still itchy by times, but it’s much better, more of an annoyance than anything. I’ve been using the new soaps and lotions too. I really like the Cetaphil lotion. It moisturizes well without being “heavy.” My skin doesn’t feel it’s “encrusted” with a thick cream afterwards. And since it has no scent, it doesn’t clash with any perfume I wear!

Another issue I’ve had for the last month is pain and aching and throbbing in my legs from just above my knees to my ankles. The pain is the worst right at the joints, but the whole shinbone can hurt as well. My legs also feel incredibly weak, like they will collapse under me without warning. I’m much more careful to walk slowly and watch where I place my feet. Wearing heels is a bit of an uncertain undertaking.

I don’t know what is causing it. Side effect of Prednisone? Prednisone does cause muscle weakness. Avascular necrosis? That’s a side effect of Prednisone too. It occurs when the blood vessels supplying the bones around a joint die, causing the bone to die too. Or, it could be GVHD attacking my joints. If it’s the latter, the increased Prednisone dosage should make a difference. So far, it’s not.

Too much walking can make the pain worse, but so can too much sitting. My joints, especially my knees, get tight and stiff and achy if I sit for too long. Let’s just say I don’t laze around too long in my recliner in the morning before getting up to eat breakfast! After inactivity all night, my knees are crying for relief! I have an idea this description sounds familiar to a lot of senior citizens. I keep saying I have a 30-year-old spirit in a 70-year-old’s body, or so it feels some days!

I have another Brentuximab appointment next week on Thursday, the 8th treatment. This treatment is the halfway mark, as we are planning for 16 treatments in all. I will see my doctor too, so I plan to bring up all these issues then.

I haven’t been out of the house more than necessary the last two months, partly because of how ill I felt somedays. The other reason was the flu bugs going around. I heard it was particularly nasty this year, and it would not have been a good idea for me to contract it. I managed to get through this winter with only a light cold early on. I’m very glad! 

March 30, 2018 Friday

I was able to solve my oxygen problems for my trip to Colorado for the stem cell transplant symposium! My oxygen supply company was able to offer me an oxygen concentrator with both continuous and intermittent flow capabilities. That means I can use the continuous flow feature at night and the intermittent flow during the day. The unit will be on wheels—about the size of a small, carry-on suitcase—with a handle to pull it behind me. In addition, I can rent two additional batteries to give me 12-15 hours of use without needing to recharge. I am so glad it worked out!

We plan to leave for Colorado on April 25. However, my trip will start on the 22nd. I’m planning on driving myself to Illinois, but I will break it up into 3 days by making overnight stops with my sister and a friend. If I do it that way, I should be able to handle it well. I used to drive the 12 hours to Illinois in a day’s time without giving it much thought. Those days are over, at least for the foreseeable future, but I’m still glad I can drive for long enough stretches to make this trip possible! After Mom and I head west from Illinois, she will do the lion’s share of the driving.

What does my life consist of by now? The usual, I guess. Keeping up with the daily things as much as I can: cooking, keeping the house semi-organized, writing, and engaging in relationships. To people looking on, it’s not obvious how much energy and time daily life takes for me. I look pretty much normal aside from my oxygen. When I go away, I can talk easily without getting out of breath as long as I’m sitting down. I think I probably present a picture of relative health.

But what isn’t obvious is how much energy all that takes from me. If I go away, even if only for an hour or two, that’s what I get done that day. My day revolves around getting ready to go and getting enough rest before and/or after the event. If today I focus on doing a bit of cooking and cleaning up my kitchen, then that’s what I get done. If I organize my desk and pay bills, then that’s my accomplishment.

Every day, I choose one, at the most two, main things to do that day. Every day is a trade-off. If I want to organize my desk and pay my bills, I’m not going to cook or wash dishes. If I wash dishes or cook, I’m not going to go away. If I go away, I’m not going to accomplish anything else aside from heating up food in the microwave for my meals. If I get a bath and do other personal care, then I will spend the rest of the day doing sit-down tasks. If a friend wants to talk on the phone, then I talk on the phone. I can’t work and talk at the same time, just like I can’t eat and talk at the same time or walk and talk at the same time. I only have so much air and so much energy. Multi-tasking is pretty much a thing of the past.

I know. We all do that. All of us always have too much going to get everything done we’d like in 24 hours. We all decide what’s important to do each day and leave many other things undone. However, the amount I can accomplish is so much less than a healthy person can in the same 24-hours. That’s why having someone come every week to help me out with basic things like cooking, cleaning, laundry, and washing dishes is such a lift. Otherwise, I simply get overwhelmed with all the basics that need done and all the time I don’t have to do it. I’ve found out how much life changes when energy and air are so finite. Usually, it doesn’t feel like a bad life; it’s just a different life.

All that said, I will be so happy when the weather is warm most of the time and it finally stops raining so much! I want to start taking some walks and see if that improves my oxygen levels and muscle weakness. After all, if you don’t use it, you lose it! I’ve also signed up for a Cancer Recovery exercise and physical therapy class at the local YMCA. The class starts in May. I’m looking forward to a structured program to perhaps help me get some strength back.

You might remember that a couple updates ago, I had written about my longing to travel the country in a 4×4 camper. Well, various people in the past few months have encouraged me to pursue that option via a crowdfunding site, such as WeCare, GoFundMe, Indiegogo, or something similar, to raise the funds for my camper and some medical expenses. I chewed on the idea for a while, not sure what to think.

As Mennonites, raised with a strong work ethic and the belief we should provide for ourselves and our families, I think we feel a little funny about asking for financial help if we need it. (Not to mention being typical Type A Americans!) Or maybe these are all just human things? 🙂

Whatever it is, someone I respect gave me this challenge a year ago regarding being honest about financial difficulties or funds needed to make a plan or dream possible. She put it this way. “We all have different gifts in life. Some people’s God-given gift is making money or running a successful business and giving to others of their proceeds. If we never tell anyone we need help, we aren’t allowing others the privilege of using their God-given abilities to bless us. And this applies in so many other ways than just finances. If we are too arrogant to ever admit we need someone or something, we and others miss a lot of joy and blessing.” Her words gave me a lot to think about.

So, take or leave it, give or don’t, it’s up to you, but I’ve started a funding campaign to raise funds for medical expenses and my dream of travel. The funding campaign may provide enough funds; it might not. I will be okay with whatever comes out of it. If you are interested in at least reading about it, the link for my funding campaign on the GoGetFunding website is https://gogetfunding.com/mytigeradventure. If you are even more curious, go to my blog page and clink on additional links there: https://inthehabitationofdragons.com/meet-ellen. If you don’t have internet access or want to ask me more questions, email me.

Prayer Requests:

1. That we can find what is causing my bone and joint pain.
2. That my eating and nausea continues to improve.
3. That Brentuximab keeps working well.

God is good.

P.S. This Sunday is Easter. Below are lyrics to one of my favorite Easter songs. It captures the darkness of the crucifixion contrasted with the joy of the Resurrection morning.

Then Came the Morning

They all walked away, nothing to say,
They’d just lost their dearest friend.
All that He said, now He was dead,
So this was the way it would end.
The dreams they had dreamed
Were not what they’d seemed
Now that He was dead and gone.
The garden, the jail, the hammer, the nail
How could a night be so long?

Chorus:
Then came the morning;
Night turned into day.
The stone was rolled away;
Hope rose with the dawn.
Then came the morning;
Shadows vanished before the sun.
Death had lost and life had won,
For morning had come

The angel, the star, the kings from afar,
The wedding, the water, the wine;
Now it was done; they’d taken her Son,
Wasted before His time.
She knew it was true; she’d watched Him die too.
She’d heard them call Him just a man,
But deep in her heart, she knew from the start,
Somehow her Son would live again!

Chorus:
Then came the morning;
Night turned into day.
The stone was rolled away;
Hope rose with the dawn.
Then came the morning;
Shadows vanished before the sun.
Death had lost and life had won,
For morning had come.

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