Look who is famous now...

I accidentally tripped across this video after watching a video about caregiving. My friend Hans is the star, talking about the point when he and Cynthia really felt in control of his CML and decided they were ready to move on with life again.

http://www.patientpower.info/video/a-clinical-trial-and-a-growing-family 

A second video was just posted and shared on Facebook about Hans.  Check out the revised version if you only have time for one:

http://www.patientpower.info/player/national-cml-society/#

Hans is such an inspiration and does lots of work on behalf of e CML Society, but I don't know how much of it he shares with others. I consider myself lucky to count him among my friends.

It's good to see that all of this research into CML drugs IS making a difference!  The drug that Hans is on is the Ariad drug that Tyler took last fall.  While it didn't make the right connections for Tyler, we were both so thankful that it did get Hans on the right path.

Blood Detectives Excerpt

Check out this link for a great video describing what happens in Leukemia patients, as well as the great advancement that was made by Gleevec.

http://www.hematology.org/Publications/Videos/5712.aspx

Sending my Love

Four years ago today, I married my true love.  We knew on the day we said our vows that "in sickness and in health" already was a reality.  But, I demanded that Tyler marry me that day, whether he was released from the hospital or not.  He spent the week before the wedding at Stevens Hospital, recovering from pneumonia and getting his white blood cell counts down.  We canceled our honeymoon cruise, but still had the big party and officially joined our lives together.

Initially, we kept Tyler's diagnosis a secret from the many people coming to join us at our wedding.  We wanted our wedding day to be one of joy and celebration at the fact that we LOVED each other.  With apologies to the many loved ones who joined us there, I still think that was the right thing to do.  Our wedding day was filled with joy and love.

Tyler started to share the following week, which prompted a great deal of shock as people heard the word "cancer".

One of the things that amazed me over and over again as we fought this battle was the outpouring of support that we received.  We could never have fought this battle on our own, but had friends and family who went above and beyond to help.  People visited us in the hospital.  Coworkers from both of our jobs made it possible for us to visit doctors together, regardless of the impact to their own workload.  Friends and family helped us to raise thousands and thousands of dollars to fight this disease.

And through it all, we had each other.  When I stop and think about how much I have lost, I can't stop the tears.  Tyler loved me and knew that I loved him.  In that one fact, we were very, very lucky.  Although he often felt like he wasn't living up to what I needed in a husband, I would not have traded one day of our time for anyone else.

I would have happily sent the leukemia packing, but know that if I had to take CML to have the blessing of Tyler, it was well worth it for me.  I just hope that he believes me now.

Cancerversary

February 19th is the 4th anniversary of Tyler's diagnosis with Leukemia.  Especially now, I can't help but wonder if getting in to the doctor earlier might have helped him enjoy marriage a little bit longer...  Tyler had been experiencing several symptoms that, in retrospect, we now know were signs that something was wrong.  Number one in my memory were the chills that he got after exertion.  Because Tyler and I were soccer addicts, we were out on the soccer field 1-2 times each week.  For the 6 month period before diagnosis, Tyler would play soccer and then shake and shiver violently for a long time afterwords.  Tyler just thought it was a part of getting old, but I thought it was a bad sign.

If you have any of the following symptoms, please make an appointment with your doctor.  It probably ISN'T leukemia, but wouldn't you rather know?

• Fever or chills
• Persistent fatigue, weakness
• Frequent infections
• Losing weight without trying
• Swollen lymph nodes, enlarged liver or spleen
• Easy bleeding or bruising
• Tiny red spots in your skin (petechiae)
• Excessive sweating, especially at night
• Bone pain or tenderness

 Who knows where we would be today if we had caught the disease earlier?

How rare is CML?

How rare is CML? Recently released data from the National Cancer Institute states the following: Based on rates from 2005-2007, 0.16% of men and women born today will be diagnosed with CML at some time during their lifetime. This number can also be expressed as 1 in 635 men and women will be diagnosed with CML during their lifetime.

How is it possible that 2 men on my soccer team were diagnosed with it?  It just seems like something is wrong there...

When does 1 + 1 = 3 ??

I recently read an article about some research on combining Gleevec with another drug completely obliterate leukemia.  As we look for treatment options for Tyler, I can't help but wondering if something like this would be a good option...

3rd Cancerversary

Today is the 3rd anniversary of the date we found out about Tyler's leukemia.  He'd been feeling ill all weekend and finally went to the doctor on Monday.  The doctor was immediately concerned when he saw Tyler's elevated white blood cell count.  Because Tyler also had pnuemonia or bronchitis, he was checked into the hospital immediately and started on IV antibiotics.

As I reflect on those early days, I remember the signs of cancer that Tyler was experiencing for months before his visit to the doctor.  I actually suspected something was wrong, although I would never have guessed that Tyler would be diagnosed with leukemia.  When Hans was diagnosed about 18 months after Tyler, we discovered that both men had experienced some of the same symptoms.  With that in mind, I wanted to mention a few of the warning signs that should get you in to see your own doctor.  These are not signs of cancer by themselves, but signs that something needs to be looked at.

• Unexplained Weight Loss
• Fever (especially Night Sweats)
• Fatigue
• Pain
• Skin Changes

Tyler had night sweats and fatigue for sure.  After soccer games, he would come home and shake and shiver for at least an hour afterwards.  This was definitely not normal for him, but he attributed this to getting older.

Please, if you have any of the symptoms above, make an appointment for a physical with your own doctor.  It is best to know what is causing the symptom and find out if you can do anything to make it stop.

Another Great Athlete affected by Leukemia

Today, Kareen Abdul-Jabbar announced that he has been diagnosed with CML.  As I read the article on CNN, I was very pleased to see that he is working with Novartis (manufacturer of Gleevec and Tasigna) to launch an educational program focused on getting treatment and following your treatment plan.  We had also learned that many cancer patients do not take their medication as prescribed, which leads to lower success in treating the disease.

While I'm sad for Mr. Abdul-Jabbar to have to face this diagnosis, I'm pleased to see that he has chosed to get out there educating others about Leukemia and I look forward to seeing the good works he is able to accomplish.

Hans update

For those of you who are also following the story of our friend Hans, he is beginning a clinical trial for a new drug created by Ariad.  I believe this is a Phase 1 trial, meaning it is at the very early stages of testing the drug, but it has shown a very good response for CML patients who are resistant to Gleevec and Sprycel.  Even more importantly, it is one of the first drugs to have an impact on the T315I mutation of leukemia.  Hans's most recent mutation testing showed that he has that mututation, so continuing with Gleevec or Sprycel doesn't really make sense.

He will have to travel to Portland for some of his treatment, but thankfully it is not further away.

Tyler and I would ask that our friends join us in praying for Hans to receive successful treatment.  The trial certainly looks like a promising option, but a little extra help is always worthwhile!

Road Trip

I was fortunate yesterday to be able to spend a full day with Hans, as we traveled down to Portland to ask some important questions about his CML. We were able to catch up quite a bit, and rehash good times and bad times. Hans and I have known each other for the better part of 10 years now, and been through quite a bit......especially recently. We met through soccer years ago, and have shared many good times. I think most everyone that visits this site probably knows by now, that Hans was diagnosed with CML last fall when I was at the beginning of my transplant preparation.

When Mandy told me that Hans had CML, I was completely dumbfounded......and it felt like a train had just driven through me! I instantly and for quite a long time thought about everything Mandy and I had gone through about hearing the news at my diagnosis, as well as thinking about everything Hans, Cynthia and his family must be feeling upon hearing that news. It was really quite devastating, especially considering I was in pretty bad shape psychologically at the time anyway. It was so strange that now along with our friend Darren Rozendaal who had gone through a transplant about 5 years ago now, we now have 3 guys from the same soccer team facing the challenge of cancer at such a young age. It seemed and still does seem unreal to me!

Back to the road trip...........Hans had scheduled a visit with a doctor in Portland who is the author of a clinical trial with a 3rd generation CML drug that is currently being tested in approximately 40 patients with some very good signs. He wanted to discuss the trial with this doctor and not only see if he would be a good candidate, but get some thoughts on his journey with cancer so far. Hans is very much ahead of the game when it comes to this battle, as he has done an amazing job researching, tapping into others experiences, joining CML groups online, and anything he can to be at the forefront of the battle against CML. I was so impressed with his questions, his candor, and his preparation for the meeting with this doctor. I'm not sure why, because I should expect it from him. His reasons for checking on this are that he has not shown a cytogenetic response to Gleevec or Sprycel, and must now consider his next direction.

We really do hate that we have this in common, but there is nothing we can do about that but fight on together with our family and friends. I think in some ways it has made the challenge of fighting cancer easier to deal with, but in other ways it has made it more difficult. Sometimes too much information can weigh heavily on the mind. I know what he, Cynthia, and his family are going through right now and it is very unpleasant to deal with. We discussed yesterday that everyone in one way or another has, is having, or will have to deal with something similar or much worse in their lifetime. With that in mind we choose to move forward and deal with each challenge as it comes.

I am very confident that Hans will recover from CML, and join Darren and I and countless others as "Survivors". I would like to ask everyone that reads this post to send positive thoughts to Hans and his family as they deal with these challenges.

Next week I will be going to my one month check-up for signs of GVHD at SCCA. At that time they will probably determine if the GVHD is progressing and whether or not we need to treat it with immunosuppressants. Prednizone was mentioned as a drug I may be taking, and I will have an update next week after I find out the next steps. It is good in many ways that I have some GVHD, because it means that my father's bone marrow is prepared to battle anything foreign to it.....not only my body, but any Leukemic cells that may try to come back. It is a fine line treating GVHD, because you dont want to treat it so strongly that your immune system becomes too weak again but you must treat it some to prevent it from getting out of hand and damaging organs, eyes, and other important body parts.

I also had a visit with my oncologist at Puget Sound Cancer Care (so nice being back with them)........and my blood results(white blood cell count, red blood cell count, and platelets) look great........my chemistry panel, Potassium, Magnesium, etc.... all look great. Some other things that have been slightly out of whack are normalizing, and overall things are looking really good. The amount of medicine I have to take has been getting less and less, and I've been feeling good overall for awhile now. My visits to the doctor are approximately every 2-3 weeks now, and I will be having my one year checkup (post transplant)at SCCA in mid-January. At that time they will do a full inspection, and I believe a bone marrow aspiration to see if Im still 100% my donors bone marrow and cancer free. They did do a couple of these post transplant already, and I am at this point "cancer free", and 100% my father's bone marrow! I know I am repeating myself, but it is still very exciting! Next I am looking forward to becoming a contributing citizen again, and returning to work hopefully a couple months from now. Fingers crossed!

Sorry to be so long winded, but yesterday really rekindled many thoughts past and present!

Tyler

Anniversaries both Glad and Sad

This is our week of anniversaries... Tuesday is our 2nd wedding anniversary and, while we aren't planning a huge celebration, I must admit to being incredibly thankful to have Tyler in my life. Even as he battles his own cancer, he is thoughtful and loving to others around him. At our rehearsal dinner, I toasted him saying that I knew he was the man for me when I realized that he had no "but". With previous relationships, I had said things like "he's a great guy, but..." With Tyler, I never had to make a statement like that. I'm extremely proud of the man I call husband!

A sadder date for us, February 19th was the 2nd anniversary of Tyler's cancer diagnosis. I'd thought about both anniversaries as the days approached, but then got so busy that his cancerversary actually slipped my mind. That's a good thing, right?

Learning that Tyler had cancer 5 days before the wedding certainly has colored much of our marriage, but I think it has also enriched it in many ways. We were aware from the very start that our time together was precious and that our partnership was truly going to be "for better or for worse". While we had laid a lot of groundwork for this in the years before, I believe that we cemented at our relationship on the day of diagnosis and not at our actual wedding ceremony.

Andrea (Tyler's mother) says that she'll make us an anniversary dinner, so I'm looking forward to a lovely evening at home tomorrow night.

May you be as blessed in love as we are!

My Husband is a Genius!

It turns out that we aren't the only ones wondering about a connection between the field turf we play on and the cancer that has affected our teammates. Komo 4 showed a spot on this issue last night. To see the article yourself, and weigh in with your thoughts, visit http://www.komonews.com/news/local/36270449.html I hate to see other soccer players affected by this, but hopefully we can get an investigation going to see what is really going on with this leukemia thing and stop others from getting sick!

Tyler is the first one I heard of considering this possibility and, the more I think about it, the more I agree. I guess he is a genius... Just don't tell him I admitted to that today!

Thanks so much to the friends who passed this article on to us. We'll definitely be following this story! If you check out the story, see if you can figure out which comment was mine. ;)

Mandy

You Gotta Ask for It

Mike e-mailed me today after reading Wednesday's post, "Generalized Signs of a Blood Cancer". He says that your doctor may not automatically test your blood for your white blood cell level, so if you are worried or are experiencing any of the symptoms we listed, you should ask him to run a CBC (Complete Blood Count) on your blood. That will give them the breakdown of the components of your blood and identify any areas that might be out balance.

Thanks, Mike, for that suggestion!

Generalized Signs of a Blood Cancer

When Tyler was first diagnosed, we saw a poster in the hospital that outlined 7 signs of a blood cancer. Tyler had been experiencing 5 of the 7 signs for some time, but he was attributing them to getting older. If we had known what to look for, we could have gotten him in to see a doctor even earlier.

In my conversation with Hans and Cynthia over the weekend, we discussed this same thing. "If I had known that these puzzle pieces are assembled into something called cancer, I would I have gone to the doctor much earlier...." With that in mind, I wanted to share a list of some things to watch out for. Many of these symptoms can exist without cancer or with other types of cancer. Just use them as a hint to get some blood work and a physical. This list is taken from the Online Cancer Guide.

The leukemia symptoms or blood cancer symptoms depend on the stage of the cancer meaning how much and how far the cancer has grown. Each type of leukemia has its own symptoms. But some of the general leukemia symptoms or blood cancer symptoms are as follows:

- Feeling tired or weakness and fatigue.
- Experiencing a bodily discomfort which is malaise
- Reduced exercise tolerance
- Loss of appetite or not feeling hungry
- Weight loss
- Pain in the bones and joints
- Infection and fever
- Night sweats.
- Abdominal pain or "fullness"
- Enlarged spleen, lymph nodes, and liver
- Frequent or unusual infections.
- Headaches.
- Swelling in the belly or pain on the left side of the belly or in the left shoulder from a swollen spleen.
- Swollen lymph nodes in the armpit, neck, or groin.

For Tyler, the most obvious symptoms were:

1. Night Sweats -- he would wake up in the middle of the night drenched in sweat. It was so bad that he often had to change t-shirts in the middle of the night.

2. Weakness and Fatigue -- Our doctor asked how long Tyler had been feeling "not well" and when he last felt "normal". Tyler said it had been at least a year.

3. Reduced Exercise Tolerance -- This is the one that had me pushing for a doctor's visit even before diagnosis. After playing soccer, Tyler would experience racking chills and nausea. The chills were really bad and definitely NOT NORMAL and the nausea was new for him.

4. Frequent or unusual infections -- the kicker for Tyler was the respiratory infection he got right before the wedding. He classified it as the sickest he had ever been. It turned out to be a very deep bronchitis or pneumonia and it took IV antibiotics to get him healthy again.

5. Headaches -- Tyler had more than his normal amount of headaches.

He also had a swollen spleen, although we didn't catch that before diagnosis.

I worry about my friends and teammates more now, than I have over the past two years since Tyler's diagnosis. The odds are just too unusual that two close friends would be diagnosed with the exact same disease within 2 years of each other. With that in mind, we decided to post some of the symptoms that we went through. If you are experiencing these symptoms, please see your doctor. We hope it is nothing more than hypochondria, but it doesn't hurt to take advantage of their expertise on this one.

Where Should You Start if you are Diagnosed with Leukemia?

These are our thoughts of things to think about when diagnosed with leukemia, although many of these would apply to any serious illness:

1. Visit the Newly Diagnosed section of the Leukemia and Lymphoma Society website: http://www.leukemia-lymphoma.org/all_page?item_id=4221 They have checklists and information aimed at helping people in your shoes.

2. Find an oncologist who really listens to you and explains things to you in English. Then make sure you like his nurse, because you spend a lot of time with the oncology nurses!

3. Likely treatment that you would go on for leukemia are Hydrea (Hydroxurea) and Gleevec (for CML) or Induction Therapy (Cytarabine or Ara-C) (for AML or ALL). Tyler's been through both, so we can answer any questions you have about our experiences on those medications.

4. Take your medications carefully. Our doctors say that about 50% of people don't take the medication as prescribed, but it can make a big difference in the state of your disease.

5. Avoid any sports with a risk for contact until the doctor tells you your spleen is normal

6. Stay healthy otherwise - diet, exercise, adequate sleep.

7. Have someone other than each other that you can talk to. Sometimes it is easier to share your fears and frustrations with someone other than your partner.

8. Let family and friends support you. It takes a bunch of weight of your shoulders AND theirs! In fact, it sometimes is good to have a mental list of the things that others can do because many will ask and want to help in any way they can.

9. Remember that some people out there might be uncomfortable hearing about your illness. It's nothing personal; it's just that they have their own issues.

10. We recommend a blog as a central way to communicate to those who want to know what is going on. Ours has been an incredible blessing to us and our loved ones both. If you don't want a blog, you might look itno CaringBridge sites.

11. Go together to all of the doctor appointments. Two pairs of ears hear better than one pair.

12. Apply for FMLA at both jobs, so that you can go to doctor's appointments without risking your job in any way.

13. Resolve any non-mortgage debt you have as quickly as you can, so that you don't have any extra financial worries as you fight your illness.

14. Take the drugs if getting a bone marrow aspiration or biopsy. Tyler had 2 bone marrow aspirations before he started getting conscious sedation and he still remembers how much they can hurt.

15. Have hope that your treatment will work. Oftentimes our minds can will our bodies to work or not, based on our mood.

16. Cry over the disappointments for a day and then get up and fight again.

17. Live every moment and celebrate every day together!


We know that many others have faced similar challenges and welcome you to add your own comments about your first steps for dealing with a diagnosis like this.

Reeling from Shock

Tyler and I have been reeling from shock since we first heard that one of our closest friends was also diagnosed with leukemia this week. Many of you who attended the auction or donated stuff to the auction will remember our friends, Hans and Cynthia, who put so much time and effort in to the auction effort and are responsible for much of its success. Both were part of our wedding party and we consider them some of the finest people we have ever met.

On Wednesday, Hans was diagnosed with leukemia too.

We cry for them because we know how scary the initial diagnosis can be. You don't know ANYTHING really except that you have cancer. Thankfully, Hans was able to get in to see some oncologists on Thursday and now knows that he has also been diagnosed with CML and he will be starting out with Gleevec. As we learned on our journey, leukemia (and specifically chronic myelogenous leukemia or CML) has been one of the biggest breakthrough areas in cancer treatment. Gleevec was approved about 2001 and has allowed many, many people to achieve remission without all of the nasty side effects that you associate with "chemo" and "cancer". We pray that Hans will have more success with Gleevec than Tyler did. I suspect that Tyler had gone too long with the disease in his system before beginning treatment, which is why it ultimately stopped working for him. With luck, Hans will respond and get into remission within the first 6 months and not have to travel the same path we have.

Our minds are puzzled however, that we have 3 men on our soccer team who have dealt with a blood cancer over the last 5 years. The odds of getting a blood cancer are not that high, but to have 3 members of our 12 person soccer team seems astronomical. So, forgive me if I beg, but... please go get a physical (with blood work) this month! My only thought is that there must be something environmental (Tyler's pick is the field turf we all play on) that we have all encountered that caused our cells to reproduce poorly. While I don't want anyone else to be diagnosed with cancer, we all know that early diagnosis of a disease is the best thing you can do to improve your chances of beating that disease. So, go to the doctor at least once per year and get your systems checked out, regardless of whether or not you feel healthy.

Sleeping Beauty

Tyler has started to feel the effects of the chemotherapy. His throat is sore and swallowing is painful again. He is disappointed because he had such a good day yesterday and was excited about eating again. Today, the pain was up considerably so we requested a PCA again. This will allow Tyler to administer his own medication, and hopefully, be much more comfortable through this stretch.

He switched from Morphine to something called Hydromorphone, which is supposed to be a little stronger and make him a little drowsy. After 3 rough nights, "a little drowsy" meant that Tyler slept all day. I'm thankful that he reports his pain level has dropped from a 7 this morning to a 3 this evening. Plus, the doctor thought this bout of mucositis might not last as long as the one from radiation did. I hope that is the case, because Tyler and I could use a few days at home, and we can't go home until he can eat and drink.

The doctors told us this morning that they found no evidence of leukemia blasts in Tyler's blood, so that was definitely cause for celebration. Sadly, Tyler wasn't in the mood to party because of the pain and his morning test.

Because of the foot drop problem Tyler has experienced, the neurologists suggested a nerve conduction study to more accurately identify the cause of the problem. Tyler described the test as torture, so I think it isn't much fun to endure. I wasn't with Tyler during the test, but he reports they spent an hour shocking him (electrical stimulation) and then another 30 minutes poking him with needles. He wasn't feeling good at the beginning and this just made him morning worse. After the test, the doctors believe Tyler's foot drop is the result of pinching or damaging a nerve while sleeping. They told him today that it will likely take 6 months (extended from the original 2-3 months) to heal -- if it heals at all. I know they have to say that, but I hate hearing that things might not go well. Tyler will definitely miss some of his activities if the foot does not eventually heal, so I am hoping that it is just a temporary injury.

The night nurse is hanging Tyler's medicines now, so I guess I had better get ready for bed myself. If we go to bed about 9, we sometimes can get 6-8 hours of sleep. It's a crazy schedule around here, but it is definitely improving my ability to sleep through things.

A Blessing of a Day

Although I doubt it will last, today was a good day. Tyler was experiencing no effects yet from his treatment, his throat was feeling a little better, and he said he was a little bit hungry. All in all, he seemed to be in pretty good spirits, so I am VERY thankful that he survived the first 2 doses so far.

He gets dose 3 tonight and dose 4 in the morning. We expect the majority of the complications to hit next Wednesday or so, with the mucositis being the one I most fear. But Tyler was feeling good today and Dr O'Meara thought it was possible that it might just be due to the fact that we are treating his leukemia and whipping it into shape.

Thank you so much for sending laughter and encouragement our way! Let's hope this next dose gets the job done without many new side effects.

Mandy

Initial Results of the Throat Scope

The GI doctor says that he sees a sore at the base of Tyler's throat and recommended that Tyler swallow nothing other than liquids for 1 week. I don't know if they can find a way to keep his leukemia under control without the Tasigna or Hydrea pills he has been taking, but I sincerely hope they can find something that will work in IV form without adding too much toxicity to his body.

On a lighter note, I must admit that I enjoy seeing Tyler sedated. The GI doctor came out to talk to us and Tyler fell asleep and started snoring while the doctor was talking. Then he woke up and asked the doctor what happened (just after the doctor had finished his explanation to me). Then he asked me at least a half dozen times what the result was. He should wake up completely over the next hour and will start remembering things then. But I can tell him stories about his wild behavior in the meantime. ;)

Plan No 342

So the doctors from SCCA and UWMC had a conference about Tyler today and came up with a new plan of action. They want to put Tyler through Acute Leukemia Induction Therapy. This involves giving him very high doses of chemotherapy for 7 days, then recovering from that for about 3 weeks. The doctors anticipate 2 rounds of chemo, so we suspect Tyler will be in the hospital for the next two months as endures the chemo and recovers from its effects.

The timing and type of transplant are uncertain. They want to see how Ty responds to the chemo and, if they can get him into remission, they will want to move quickly with the transplant. Thankfully, they still think that Scott can be the donor for other types of transplant protocols too. Having a famiy member as a donor enables them to move forward with the transplant at any time.

Their goal is to start the chemo on Monday, so we are supposed to spend the time until then getting Tyler as strong as possible. Eating and pill taking are still challenges, but it is important that we keep working on those tasks to get his body's strength up. He didn't get his IV nutrition today, as our goal has been to get him eating again in preparation to go home. Then when he ordered breakfast, they told him he couldn't have anything by mouth from 9am until 2pm. This kind of interrupted his plans for a good healthy breakfast to start the day. But he got his sedation for the bone marrow aspiration and biopsy today, which was very important. I hadn't realized that he was getting a biopsy today and it isn't something he has gotten before.

While we are disappointed with the news that Tyler will have to undergo two months of bad chemo, I am thankful that we have a new plan and I pray that this is the one that works.