Tysabri and SoluMedrol, and My Husband's Cancer

Things haven't been going good here at my house. The Tysabri was holding me steady at my baseline (poor, but liveable). But, I've been under a lot of stress and we were in an awful heat wave for two weeks. I guess those two combined gave me an MS flare. Everything got worse.

I called my neuro, who ordered a 3-day course of IV steroids. My veins are becoming scarred and they roll and are very hard to infiltrate. Home health came, and the nurse tried one arm and the vein blew. She told me that she only allows herself two sticks before she calls in another nurse. That's the way the nurses are at my infusion center. Luckily, she got the port in my left arm and it stayed. They use these things called medicine balls. They are wonderful. The ball is pressurized to deliver SM over a one-hour time period. They're small, and you can even put it in your pocket and walk around with it. However, there was no time to do that, as the nurse had to ask me 1,000 questions. She was super nice, though.

My DH was started on a new cancer fighting drug. The side effects are bad and there are many. After the 10th pill of a 28 pill cycle, he had fatigue to where he could barely walk and shortness of breath. He's sleepy but can't sleep. He's hungry but can't eat much.He's having diarrhea, mouth ulcers, and chills. Friday, I told him to stop taking the pills and call the oncology nurse Monday. He called, she talked to the doctor, and then she called back and told him to stop the medicine for one week. They will probably put him on a lower dose, 20.5 mg I think. She did mention that some people get the side effects, even on the lowest dose. Sutent is what it's called, and it restricts the growth of blood vessels, hopefully shrinking the lung tumors. There are two more chemo drugs for his disease, then that's it. Unfortunately, his type of cancer is incurable. They can only hope to control it for a time. But if his quality of life is as bad as it was Friday, he may elect to discontinue all chemotherapy and take his chances, living a better life for as long as possible. I'm behind any desicions he makes. I would do the same if it was me going through this hell.

We had my BIL and SIL here for the weekend, and we had a wonderful time with them. By Sunday, DH was feeling better. Yesterday was better still. Oh, the worst symptom with this drug is what they call hand and foot syndrome. The skin on your hands and feet begins to break down and you develop tears, cracks and ulcers, to where you can't walk. That usually happens in the fourth week. You get two weeks off, then they repeat the cycle.

Tysabri Infusion #7

This precious pup is Montana when he was about three months old, living with Linda and Jim, who were his puppy raisers.

I had my Tysabri at the new infusion center. I was there for 3-1/2 hours. First, either my new neurologist or the Tysabri people have added Tylenol and an antihistamine to the protocol. No one told me. I had taken a Zyrtec that morning and since it's an antihistamine and a once-a-day pill, they accepted it. They gave me a Tylenol, and then had to wait 45 minutes before they could begin TY administration. Now, I know to take one before coming in!

Since I was a new patient at the infusion center, there were a whole lot of screens to be filled in. Finally, the questions were asked and answered and the Tylenol was in my bloodstream. Gwen, my infusion nurse, got the IV in but then the vein blew. Second time, other arm, worked. So, after all that, there was still the hour of TY and the hour of normal saline, then 15 minutes of observation.

Arnie was able to take Montana for a long walk around the hospital grounds. Of course, when they returned, I still was waiting to be infused. We talked awhile, and I suggested that he go ahead and pick up the groceries we were going to get when we left there, take them home and put them up. Then, come back at 5:00, and surely I would be able to leave by then. That worked out okay, and saved us some time.

I'm all excited because Thursday we are going to NJ for Passover. Our son and grandson are flying in from CA to join in the celebration. Haven't seen them since Thanksgiving. My SIL has hired a caterer for the cocktail hour and for the Seder meal so that she can sit and enjoy the family instead of cooking for days like she did last year. She is a fantastic cook, but this will be much easier on her.

A friend of mine, Leigh Brill, has written a book titled A Dog Named Slugger that is due out next month. It is about her first service dog, and how he helped her get through graduate school. I can't wait to read it, and since she's in the book club I belong to, her's will be the next book we read and discuss. It is all very exciting for all of us at Saint Francis!

I hope everyone has a good week with lots and lots of sunshine and love.

Friends With MS

It is amazing to me the number of friends I have made who also have MS. I don't go to the local MS support group. I've tried support groups in the past, but didn't care for them. However, last year I began going to an MS Yoga class. Most of the people in the class have MS. Our instructor is amazingly kind and very sweet, and we all love her. I met a woman when I went to Yom Kippur services without DH, who has MS and invited me to sit with her. We have become friends. I've made friends at the infusion center, most of whom are receiving Tysabri. Then, there are all of my online friends whom I've never met but we've become close through the forum (NeuroTalk/PsychCentral), which I've belonged to for a few years and have found it to be the best MS forum. I was recently asked to submit my blog to Wellsphere. What a grand feeling that was! Thank you, Wellsphere for wanting to include my blogs, and for giving me a boost!

When Montana moved into our home and into our hearts, I made some of my best friends, support system, and all-around super people through Saint Francis Service Dogs. I was told that when you are partnered with a dog, you become part of the Saint Francis family. Sure enough, you do exactly that. I volunteer as much as I can for them, trying to give back just a little bit of what I've been given.

This led to being invited to join a book group whose members are all Saint Francis people; partners and their dogs, committee members, donators, and Carol. Carol is the most amazing person. She is the co-founder of Saint Francis Service Dogs. I was amazed to be invited to this book club, The Divas. I've always had a love of reading, and I always have two books going, but this is the first book club I've been in. There are two of us with MS, and we have become good friends.

Two years ago, before I was partnered with Montana, my world had shrunken to online friends and my dear friends who live in different parts of the country. I had become a hermit. DH would try to get me to go places, like social functions, and I would beg him to let me stay home. If we went, I would end up against the wall waiting to leave at the first opportunity. I was ashamed of how I looked to other people, walking with a rollator or forearm crutches. I didn't want people to see me like this, and I didn't want the usual remarks of "you look good" or "you're walking better than when I saw you before" or "my daughter's friend's mother has MS". Eeeeek! I can't stand pity, I didn't have anything to talk about to anyone, I just wanted to be in my safe little house.

Montana and the SF people opened up my world again. The first thing I did was get interviewed by the local newspaper. Meg (the reporter and interviewer) and I have since become good friends. Then, I did a couple of demos at grade schools. Those were lots of fun. Montana and I were filmed for a PSA commercial that runs throughout Virginia. I'm on the Outreach Committee, picking up phone messages and passing them along to my boss when people call to ask about getting a service dog.

I have taken a great interest in the outside world again. If the Tysabri continues to work and my balance continues to improve, I'm buying a pair of ice skates next month for when the indoor ice rink opens again next September. That should be something to see, since I haven't skated since 1969!!! I'll be sure and post pictures. However, I want to buy a pair of skates and hang them on the wall as a reminder of what I may be able to accomplish, thanks to my miracle drug.

Hello to all who read my blog, and thank you so much for taking an interest in it! hugs, maryann

Tysabri Infusion #4

The third time was the charm, as they say. However, after about three weeks some of my MS symptoms returned. My arms got weaker, my tremors became as bad and irritating as they were before. I had my #4 infusion Wednesday, Dec 30. Things have calmed down again. My tremors are slight, and I've got the strength back in my arms.

It's been way too cold to take a walk for awhile now. We're in southwestern Virginia, and right now (4:30 pm) it's 22 degrees with a wind chill of 3 above zero. I haven't been to Yoga class in three weeks, but it is due to start up again next week. I try to do a lot of the exercises that we do in class, which I believe does help.

My husband has seven more injections of chemo left to get through, then two days after they're complete he will have a CT scan to see if any of this worked. He has been through some awfully bad times the past two weeks. I feel so bad, as there isn't much I can do for him except to listen to him when he needs to talk about all of this. Twice last week, we had to sit in the car in the hospital parking lot until he could get his coughing under control in order to drive us home. Twice, he's coughed so long and hard that it has made him throw up. He also has an itching, with no rash, that can pop up anywhere above his waist and last for hours. He has two anti-itch meds and four creams, but nothing works. He just has to live through it until it passes. He is weak, and has to lay down a lot.

If the Interleukin 2 protocol works, then he has to have it again three more times with a month in between each set of treatments. If it doesn't work, then we have to consider his options and make some very, very big decisions. Please keep him in your thoughts, prayers, or whatever you believe in that will send positive and good vibes to him. Thank you for reading this, for following my blogs, and for your support. maryann

Tysabri #3

I have a lot to write about this week.

First, my last Tysabri infusion was December 1. That evening, I noticed that my balance had improved somewhat. I was no longer running into walls and doorways. As of today, my balance is as good as it was five years ago--that's when it began to get bad. Three days ago, I took my first walk with my husband and Montana. That made both of us very happy; we had grins on our faces. It wasn't easy, and halfway through the walk my legs got shaky, but that's because my legs are weak. A walk with Montana and Arnie has been a dream of mine since he came to live with us.

My tremors have also improved. However, we don't know if it's because my neuro adjusted my Klonopin dose or if it's because of the TY.

I have energy again. Instead of sitting like a big lump in my chair, I'm able to get up and do things around the house.

Second, Arnie had a CT scan and he now has cancer in his lungs. The oncologist said that it probably has been there for a year (he had his kidney removed in January due to cancerous tumors), and that the cells traveled through his bloodstream from his kidney to his lungs. However, it took them awile to get large enough to be picked up on CT scanning. Monday, he began chemotherapy. It's called IL-2, and it's given by injection five days a week for six weeks. Then, they will take another CT scan. This only works in 15% of the patients with cancer like his. If it doesn't work, then we will go to a large teaching/research hospital, either in Charlottesville, VA, Raleigh-Durham, or Winston-Salem, NC. We want the best, and we're afrad that the small hospital here in Salem can't give him the best. I think he's going to be one of the 15% that this works on--I've got to think that, because the alternative is not good.

Third, we went to New Jersey for Thanksgiving, and we had a marvelous time. Our son, DIL, and two grandsons were able to fly in from LA to be with us, and that made it even more special. The picture I've posted is Aaron, Arnie, and Montana in Ocean City, NJ (my favorite place to be).

Staying Positive is Hard!

I'm finding it hard to stay positive. Okay, I started Tysabri and I've only had one infusion. I did notice that I had energy, and I still have it, where I didn't have any at all. That's very positive.

However, my neuro increased my Klonopin but I'm still having tremors. He didn't feel that the Tysabri would help the tremors. Sometimes they're mild, but other times my entire body is shaking. It's hard to walk, type, feed myself, write; any type of coordinated activity is hard and sometimes impossible. Add to that, my little finger and ring finger on my left hand are completely numb and have been for about four months now. It's amazing how much harder it is to type with those numb fingers. I know, poor me!!

The muscle spasms in my right leg are worse. My neuro said that he wants to wait and see if the Tysabri will help in that aspect. I'm doing exercises, but sometimes in the middle of the night it gets so bad that I have to get up and walk around until it goes away. Sleeping on my left side has become impossible, because that immediately brings on spasms.

I also told my neuro that I'm worried about my cognition. I'm having a very difficult time remembering things, and these are things I've just heard or said. I'm having a hard time naming items. That got me worried about Alzheimer's, although it doesn't run in my family. That, too, my neuro wants to wait and see if the TY will improvie my memory before he starts running any kind of tests.

On the positive side, we're going to Newport News, VA for two days. We are going to spend one entire day at the Mariner's Museum. This will be one of my highlights as I love sailing ships of any kind, especially the ones from the 1600's. We will be visiting a few other museums in the area...and there is a Trader Joe's in Newport News! I love Trader Joe's, but there isn't one anywhere near where we live. When we lived in Tucson, we went there at least once a month.

After Newport News, we will drive on the bridge over the Chesapeake Bay, stopping at pull-out places to enjoy the bay and the ocean. Then, it's on to my BIL's for some family time.

The day after we return from this trip, I will be getting my second Tysabri infusion.

I'm trying to stay positive, but I find it's much easier to become negative. Maybe it takes too much energy to stay positive?

Tysabri Infusion #1

Yesterday, I had my first Tysabri infusion. I also signed up for the TYGRIS study.

The infusion nurse had a few problems getting the IV needle into my vein. After two tries on my right arm, she had success on my left arm. Jane is a marvelous nurse and very good starting IV's, but my veins don't cooperate and this wasn't the first time that there were problems.

The Tysabri IV ran for an hour, then I was given normal saline for an hour while being watched and checked for any side effects. Luckily I didn't have any side effects, so was released to go home.

I did get a slight headache yesterday evening and Tylenol helped that. I also got a queasy stomach and sipping seltzer helped that.

No improvement yet, not that I expected a miraculous cure after the first infusion!

The picture was taken at a Nature Preserve in SC. I was very proud of myself for walking up and back down the path, and for getting up and down all those stairs. With Montana by my side, I feel safe and confident. He is one fantastic dog!

High School Reunion and Tysabri

My 40th high school reunion was wonderful. A handful of us who have kept in touch since graduation all sat together at the same table, then went out to lunch the next day. We talked and talked. I walked around a little, but mostly just sat at the table and talked to people who came and plopped themselves down next to me for a chat. No one asked me what was wrong physically with me, for which I was grateful. However, Montana was a huge hit. Everyone wanted to know about him and what he was able to do for me. So, through him, my illness came out for discussion after all.

The picture is of my handful of HS friends. We had a 2-hour lunch, talking and laughing, and no one wanted it to end. What a wonderful weekend it was!

I was accepted by NORD for financial assistance with my Tysabri co-pay, so I will begin the infusions September 25. I can't wait! I feel so very positive about this drug; that it's either going to improve some of my symptoms or, at the very least, stop the progression. The people at the TOUCH program who handle Tysabri patients are very nice and caring. They sent me a tote bag, a nice red fleece blanket, and lots of information and resources about Tysabri.

Time to go work in the garden on this beautiful day. I've planted my first ever winter carrots, and already the feathery tops are an inch high. I have so enjoyed my five little gardens! I had enough tomatoes to share with the neighbors, and for us to eat nearly every day. I even made two batches of tomato soup. However my favorite, after a tomato sandwich, was to peel the tomatoes and chop them up, then add olive oil and balsalmic vinegar and chill. Now, that is delicious! I also had flowers (I grow nearly everything from seed) called Asclepias that have a beautiful red, orange and yellow bloom. These get about 3' high, and they attract Monarch and Black Swallowtail butterflies.

The five little gardens, plus the potted plants on the deck, were just enough for me to handle. I do a little bit at a time so I don't run out of energy, and I still get some exercise and fresh air and sunshine. Plus, I get a great sense of accomplishment growing and harvesting plants. Montana is always out with me in case I fall, and DH pokes his head out once in awhile to see if I'm okay. They keep watch over me, but not in a pushy way. I love them both for that.

Tysabri and Little Pieces of My Live

At my last neuro appointment, he and I had a talk about how my MS is getting worse and how he and I believe my current therapy (then), Betaseron, just wasn't helping. I told him that I wanted to start Tysabri infusions and he agreed.

Problem is, I have Medicare but no supplemental insurance. The Infusion Center figured that my co-pay would be $575 every four weeks. There is no way in hell that we can afford that kind of money, I don't care how good the drug works.

I contacted TOUCH, and they put me in touch with NORD. I got paperwork from NORD yesterday, and we'll get it filled out and make copies of our financial records, hoping that they will cover my co-pay.

If I do get to go on Tysabri infusions, it will be wonderful. I honestly believe that this drug can help me.

If I don't, I'm not going to get depressed or sad. I will just continue on with my life, deteriorating toward who knows what. I will be DMD-free, anyway.

In other news, I was invited to join a book club--my first ever. Our first book was Travels With Charlie by John Steinbeck. Loved it. We meet every other month at a nice little restaurant that is closed for lunch during the summer, except for the book club. We have great food, good discussions, and lots of laughter. Three of the women in the club (including me) have Saint Francis service dogs. The woman who started the club is also the woman who co-founded Saint Francis. There are 10 of us, and everyone is nice and friendly. Our next book (just started reading it today) is The Good Earth by Pearl Buck. Think I may have read it in high school, 40+ years ago!!

I have also volunteered and been accepted to be on the Outreach/Screening Committee for Saint Francis. Eventually, I will be calling people who have applied for a service dog, asking them questions and talking to them about the responsibilities and hard work that goes into training with your dog. I will sit in on interviews of people who have passed the screening, and I'll have imput into whether or not I believe they would be a good candidate for a dog.

These two things are giving me something to do outside of the house, and also giving me a sense of accomplishment.

Next Saturday is my 40th high school reunion. I am very excited about it. This is the first one I've ever attended. There are a group of us who have kept in touch through the years who are all going to sit at the same table. Next morning, this same group is meeting for lunch and talk. There are so far 45 graduates (plus spouses) who have signed up to come. My class had about 125 people in it, so that's not a bad turnout.

Good Grief, My MS Is Getting Worse

My tremors are increasing, my balance is worse, and I can barely lift my right leg. I'm getting worried. I had a 3-day course of Solumedrol, but nothing improved. My neuro increased my Klonopin, but that's not helping my tremors.

I've made up my mind, after talking to people at the Infusion Center and reading posts on my MS forum, that I'm going to tell my Neuro that I want to stop Betaseron and go on Tysabri. I've heard more people say they've had improvement than not on Tysabri. I don't know if he will go along with it. If he doesn't, I'm seriously thinking about trying to find an MS specialist. I really like my neuro, but I think he and I need to get more aggressive in my treatment.

I have an appointment with him the end of this month, so we shall see how it goes. Wish me luck.