August 28, 2012 – Things Begin to Coalesce

Summary

Met with local oncologist Dr. Levine, and we are converging towards the standard of care treatment, Bendamustine + Rituxan + maintenance Rituxan. Two day treatment, every three weeks, six cycles. Followed by some period, probably two years, of quarterly or bi-monthly Rituxan. All other possibilities had issues or risks that aren’t optimum. This regime shows 69.5 month average of “progression free survival” versus 39 months PFS for the previous treatment I took (CHOP-R) and is about 2/3 less toxic. This can be administered locally, no trips to Moffitt required.

After I’m back in remission, we have to make a decision about pressing on for an allogeneic transplant, or waiting until next relapse, hoping for newer technology to supersede the need for the transplant, or at least put me back in remission so I can go forward with transplant. By that time, I’ll be towards the upper end of the age bracket for one of these transplants, so doing it sooner has advantages.

Excruciating, Disgusting, and Intensely Personal Detailed Information

First off, for any of you who don’t know Dr. Levine, he’s the bomb. There is, in my expert opinion, no finer doctor around, medically or otherwise. We here in Brevard are blessed to have him in our little corner of heaven on Earth.

After our appointment this morning, where I expressed my difficulties communicating with docs and nurses at Moffitt, he fired off a long email; worked his usual full day, then stayed late at his clinic researching alternate treatments, calling me at home at nearly 7pm with results of his study. Most clinical trials are using Velcade, so he was looking into combining that with the recommended treatment above. Turns out that’s too nasty unless I was in really bad straits. 

So here’s the near term plan, unless Sandy and I make a decision not to go with the plan above.

• Tomorrow I meet with the Oncology Education Nurse, who gives lots of gory and useful details about the treatment, including side effects, risks, indicators of problems to watch out for, and the mechanics of administering it.
• Thursday I talk to my dentist, Dr. Andrews, about a problem with a crown. They really want all dental issues settled before your immune system goes south.
• Tuesday the 4^th I have a colonoscopy, which was routinely scheduled, plus Mantle Cell often presents in polyps.
• Wednesday the 5^th I meet with Dr. Zambos, my surgeon, to have a pre-nuptial counseling session before  I become “man and chemo port” again. Not sure when the blessed event takes place, except it will be before the 11^th.
•  September 11^th & 12^th would be my first chemo session if we go the Br-R approach, or probably any other.
• September 13^th I get a shot of Neulasta, which pumps up and stabilizes my white blood count.
•  Repeat every three weeks for five more cycles

Here’s a study showing the results of my probably treatment:

www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=114&abstractID=95807

For those interested in what a chemo port is:

http://en.wikipedia.org/wiki/Port_%28medical%29

All Your Offers of Help

Are HUGELY appreciated! We promise, when we need something, we will ask. Any shyness we had about asking for help was overcome last time. Right now, we’re fine. Later, we’ll need something.

What can you do right now?

1.       If you pray, please do so. If you don’t, consider starting. Our family is strong, close, and supportive. But I’ve got to say, this whole thing sucks like a 10 horse shop vac and we need all the support we can get. Plus it makes you feel good.
2.       Donate blood. If you can. Not for me, but just in general. Sometime I may need blood from someone I trust, in that case, you’ll know. If you’re type A Negative, please let me know.
3.    Consider registering with The National Marrow Donor Program. If I go for a transplant, first they’ll test my sister for a match. She has a 25% chance of matching. Then it’s a crap shoot to find a match. Only about 1% of people match. So the more possibilities, the higher the chances I can find someone. It can be done by mail, with a cheek swab kit. Go to www.marrow.org and check it out. Please.

Horrible Terrible Cancer Jokes in Bad Taste

WARNING: 37% of people will think I’m a terrible person for posting these. The other 63% will KNOW I’m terrible! I strongly recommend you don’t read these!

A man isn't feeling well, so he goes to see his doctor. The doctor examines him, and then asks to speak with his wife. The doctor tells his wife that her husband has cancer. The wife asks "can he be cured?" The doctor replies "there's a chance we can cure him with chemotherapy, but you will need to take care of him every day for the next year - cooking all the meals, cleaning up the vomit, changing the bed pan, driving him to the hospital for daily treatments, and so on".
When the wife comes out to the waiting room, the husband asks her what the doctor said.
The wife answers: "he said that you're going to die".

Not the Best of Days

News

Moffitt Cancer Center is, I think, a typical research hospital. Meaning it’s about the science, not creating a healing environment. Basically, when you’re the best, and know it, and people have no choice, you don’t have to treat them well, just treat their disease. Too bad for me, I forgot Step 3 of my own advice (Page 7-8 of my book). “You are in charge.” When we left Moffitt last Monday, they owed me three things: Results of my needle biopsy; a teleconference with the clinical trials coordinator, and an appointment with my transplant doctor. I waited all week for any of the three to happen. Finally, on Friday, I called Dr. Sotomayor’s nurse and left a message about these things. 

Yesterday late afternoon, she called back. She apologized I’d heard nothing, let me know she’d get hold of the clinical trials nurse, and casually dropped the biopsy results on me. Unfortunately, it is confirmed as relapsed MCL. A number of people including Sandy had been praying for “not cancer at all.” I sort of had my head in the place where it would be another, more treatable or less urgent kind. Well, we don’t always get what we want, to quote a famous old rock song.

She also is going to contact the transplant doctor again to try to get them to call me to set up an appointment. We had VERY poor experiences with that department last time, as far as scheduling, making calls, follow up, etc. so I don’t expect much this time.

Late that afternoon, the clinical trials nurse called. She said she’d left a message on our phone last Tuesday. Well, we did have a missed call on the Caller I.D., but no message. She couldn’t talk to me then, but we will talk Monday about clinical trial options.

So, had I started calling on Wednesday instead of waiting until Friday, I’d have the info needed on clinical trials already, my appointment scheduled, and would have the weekend to consider and plan. 

Message: YOU ARE IN CHARGE OF YOUR DISEASE. Don’t wait for them, press them to respond to you.

The Science of Cancer

So, what is cancer anyway? There are lots of web sites out there to explain. Here’s my analogy, followed by some “real” science. Cancer is basically domestic terrorism. The body’s own cells turn against it. Instead of quietly moving into a nice neighborhood, reproducing, and dying like good little citizens, they become warped, live long and breed more terrorists, and muscle in on everyone else’s business, spreading hate and discontent.  They’re hard to find, and darned hard to kill.

Something in a cell’s DNA goes whack, letting it become very prolific and unspecialized, as well as disabling the mechanism that self-regulates and ages it. So they grow like crazy, spread around other parts of the body, and interfere with the functioning of the organs they grow in.

Lymphoma is one of the three major types of “Blood Cancers”, along with Leukemia and Myeloma. Lymphoma starts, unimaginatively, in the lymph system, which is WAY more spread around the body than you’d think. We’re using to prodding our necks, maybe under the armpit, and sometimes in our groin, when we have an infection, so see if the nodes are swollen. Turns out they also run through our torso, upper thighs, etc. Since the lymph system filters blood, it’s pretty common for cancer to spread into the bone marrow, which is where the stem cells that become blood cells are born. This is why, what used to be called a “Bone Marrow Transplant” and actually involved swapping marrow around, is now called a “Stem Cell Transplant” and is done by filtering stem cells (immature blood cells) out of the donor’s blood, and putting them in the recipient through an I.V. It’s also why you hardly ever have any Stage of lymphoma other than 4, total body. Hard to catch just one lymph node before it’s spread the bad guys into the blood stream.

http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=6300157

Is the LRF’s page on MCL. If you’re going to support a blood cancer organization, I feel this provides MUCH better bang for the buck than the Leukemia & Lymphoma Society. LRF is all about putting money into researching cures and supporting scientists. L&L does GREAT work supporting patients and families, and raises tons of money and awareness, and I bless and thank the people involved. I just think the LRF has a laser focus on curing the disease.

Zen and the Art of Living With Cancer

The best thing about having cancer: hearing all the nice things people think about you without having to attend your own funeral! Last time, and now this time, it’s humbling and uplifting to find out I matter to other people, and they feel knowing me is a positive thing. Since I figured this out, I try to make an effort to be more open about letting people know they are important to me, that I’m impressed with them as they are, and telling other people positive things about them.

So, instead of just doing this with people who are sick and/or dying, why not tell ALL your friends and loved ones, regularly, how you feel about them? What a nice way to live your life, openly praising and being praised. Lesson learned.

Horrible Terrible Cancer Jokes in Bad Taste

WARNING: 37% of people will think I’m a terrible person for posting these. The other 63% will KNOW I’m terrible! I strongly recommend you don’t read these!

This stinker courtesy of my BCB (best cancer buddy) Kurt.

A guy goes to the doctor with advanced cancer. Doctor says, “Well, I think the best thing for you to do is go to a spa and take a mud bath every day.” Patient: “Will this cure my cancer?” Doc: “No, but it will get you used to the feeling of dirt.”

I warned you.

God Bless all of you who are praying, calling, emailing, and otherwise supporting us.

August 20, 2012: Moffitt Visit One

WARNING: Technical, icky, and personal information below. Also this is a very long document.

 Enter with care!

Sandy and I went to Tampa yesterday, and visited with Dr. Sotomayor, The Wizard Of Mantle Cell. Will save editorial comments on the inefficiencies of the Medical Machine until another post, and focus on the information we gained. We also met with a couple of other specialists and I had one procedure done.

First, it’s not a given that what I have is relapsed Mantle Cell. Dr. Levine had indicated there was a chance this was Diffuse Large B Cell, not MCL. Dr. Sotomayor feels highly sure it’s MCL, but says there is a chance it’s something else. He mentioned, for example, Follicular lymphoma. Also, the fact I was in remission for 6 years is highly encouraging, and there’s a chance this could be what’s called “indolent” lymphoma (as opposed to “aggressive”). Often, for indolent lymphomas, the “watchful waiting” approach is best, delaying treatment months or years until its necessary. 

Short and not too happy message here: last time, we swung for the fence and went for a cure, for this pretty much incurable disease. Well, guess what. No cure. The rest of this post is better news, though.

To that end, we knew a biopsy was in the plan. We had figured it would be an excisional type, meaning surgery to remove a node for analysis. Instead, or in addition, today they did a needle biopsy. Just what it sounds like, using a big syringe to remove fluid from a node, in this case from the pelvic area. One more encouraging note: while CT scans showed lots of affected internal nodes, all 4 doctors that felt around couldn’t find any in my neck, shoulders, or underarms big enough to even biopsy. We take that to mean my case is much less advanced than last time, which just has to be a good thing. There’s still a school of thought among me and my fellow optimists that this isn’t cancer at all, but rather some sort of infection. This type of biopsy doesn’t always produce verifiable results, but is so much less intrusive it’s worth a shot. If it doesn’t prove anything, it’s on to the surgical verification.

Next, assuming it is (and most probably, is) MCL. There are many more options than we had last time. Here are the major “branches” on the treatment tree. Dr. Sotomayor is very visual, always draws pictures and diagrams for us. Unfortunately, his handwriting makes mine look lucid, so there was a lot of head scratching and internet searching last night to recover what he’d written.

Branch 1 – Standard Of Care: Bendamustine + Rituxan, followed by 2 years of maintenance Rituxan.

This is the default treatment. He thinks there is a significant chance it would put me back in remission and keep me there 4-6 years. All the research we’ve done, and comments by most doctors, have this as a pretty sure thing. He isn’t quite that ready to commit. He said 40-60% chance of complete remission, else a good chance of partial remission. Treatment is milder than what I had before. This would be administered by my home oncologist, Dr. Levine. 4 to 6 cycles, 3 to 4 weeks apart for the Bendamustine.

Branch 2 – Clinical Trials

Understand, with cancer a clinical trial isn’t one of those double blind things where some people get the medicine, and some get nothing. In cancer, you either get one treatment or the other, and you know what you’re getting. They just compare groups of patients for who has better results. Most get the Standard of Care, volunteers get the trial treatment. There are also different levels of trials, usually called Phase 1, 2, and 3. Phase 1 are early, Phase 3 pretty mature. Most research comes out of Germany, moves west to the UK, Canada, then the U.S. So by the time a trial is here, it’s quite mature and well understood, just not FDA approved (possibly) or recognized as Standard of Care by insurance companies.

There are two he recommended we investigate, both Velcade plus something. 

One is a cell cycle inhibitor called PD (http://www.pfizer.com/files/news/asco/pd_0332991_cdk_4_6_inhibitor_fact_sheet.pdf)

The other is (we think) Velcade plus dexamethadone.

These two, he says, are very promising. A down side would be that I’d need to have a lot of the work done at Moffitt, involving a lot of driving. We are going to get a call from the Clinical Trial coordinator to have a long discussion about these options.

Branch 3 – RIT (radio immunology therapy): Epratuzumab

Waited a while to talk to a nice radiation oncologist. Can’t do this one, since I had Zevalyn last time. But, he said, if Dr. Sotomayor and Dr. Ayala (transplant doctor) agree, a similar compound, Bexxar, could be part of my basic treatment as a “retreatment.” We have a lot of research to do on this one. Zevalyn was hideously expensive. (one shot, the sticker price was $98,000; discounted to $54K by going without stereo and wheel covers). 

All of these still leave open the chance to do an allogeneic (donor) transplant, either right after I go back into remission, or possibly later. Again, lots of talking to do on this. I will have an appt with Dr. Ayala, my transplant doctor, shortly to discuss the pro’s and con’s and possibilities. This is something I chose to forego last time, in favor of the less risky autologous (self) transplant. I can’t do another autologous, so it’s up to a lot of factors whether I go for the allo transplant this time, or wait. (Overall historical average survival rate on an allogeneic transplant is 80-90%, so even though I’m young and healthy, that’s something to consider carefully)

We also talked about other possibilities we’d researched. I don’t qualify for a vaccine trial, because right now he’s only able to do this for first time (not relapsed) patients. We talked about dual antibody therapy (too new, not ready for prime time) and Hyper-CVAD (too harsh for my condition).

I signed up for a very interesting, and potentially very beneficial program called Total Cancer Care. This is a study where I donate extras of each sample (blood, biopsies, etc) and they do genetic analysis on them. Thousands of people are participating. The analysis is meant to contribute to broad research and long term development of treatments, BUT … if analysis shows something current would help me, that info would be fed back into my treatment plans. Unfortunately, results wouldn’t be available in the short term (something like a year) but very likely would be available to help with my next remission/relapse cycle in a few years. We could pay for the analysis to be done now, costing thousands of dollars not covered by insurance. More to think about.

Summarizing: 

We need to talk to the clinical trial coordinator, and transplant doctor. Need to get results of needle biopsy. Possibly need to get excisional biopsy done.  Then decide treatment plan.

Comforting thoughts: 

It is very feasible, that, using the Standard of Care treatment, I could take a not too severe treatment regime, go back into remission for another 5 years, then when I relapse again, either do the allo transplant, or ride the odds that two to five more technology cycles will have produced something even better, safer, and more like a cure.

For those of you with serious medical chops, or techno-nerd risk takers, here is “the” paper explaining what’s in the head of The Wizard. I wouldn’t go in here without a paddle. You’ve been warned.

http://www.google.com/url?sa=t&rct=j&q=MCL+bortezomib+plus+inhibitor+clinical+trial+moffitt&source=web&cd=1&ved=0CEQQFjAA&url=http%3A%2F%2Fwww.moffitt.org%2FFile%2520Library%2FMain%2520Nav%2FResearch%2520and%2520Clinical%2520Trials%2FCancer%2520Control%2520Journal%2Fv19n3%2F227.pdf&ei=odsyUN3sMoyu0AGrkoGwBg&usg=AFQjCNFq88BM-3iLHO41lNQ8PCCNmv_ldA&cad=rja

Thanks for reading, and God Bless You for your prayers and encouragement!

KB

The Calm Before The Storm

Interesting times. Thanks to all who've emailed, called, FB posted, and spoken to me in person. The sheer number of prayers, thoughts, and considerate offers of help is whelming, if not overwhelming. You can't have too many prayers, I think.

Monday we go over to Moffitt to  consult with Dr. Sotomayor, one of the world's experts on Mantle Cell Lymphoma, and a truly significant scientist in the battle against MCL. There we'll find out options for treatment, plumb his brain on things that aren't quite "standard of care" yet but I could try, and generally pummel him with requests for information. We are actually the kind of patients he loves. Google his profile and papers.

Hope lives. Leading first line treatment, Bendamustine plus Rituxan, is advertised as half as toxic and twice as responsive as what I had last time, CHOP-R. Might not even lose my hair, if that's the one I take.

In other news, I'm finding the second time around is different, and I finally figured out why. No Whirlwind.

If you've never had cancer, or been the immediate support person for a newly diagnosed victim, you may not understand this statement. If you have been in that position, you'll get it right away.

First diagnosis is a stunning, literally, event. You are stunned into semi-coherency. Then you enter a strange, surreal whirlwind of appointments with oncologists, surgeons, even your dentist. You have lab work over and over. Scans, biopsies, and exams. Insurance calls, juggling schedules, work arrangements, child care issues.

Then there's "the calls." Who do you call when to tell about this. Facing co-workers. Figuring out who will be offended if they don't hear it straight from you. Yes, people get their feelings hurt over your cancer. It's a sign of your measure of the closeness you feel for them.

Second time around around, it's still stunning. But for me, at least, not quite as much. I mean I KNEW I had cancer, and that it could come back. In fact, I've been "outside the science" for the last three years, meaning my cancer is a recently identified type, and there weren't many people who'd had similar treatment to mine. So, statistically speaking, there aren't any good statistics for me and mine.

This time, we already know the drill. The urgency to treat is there, but not quite as high pressure. We already know that Moffitt has valet parking, where the offices are, that the lab will be a nightmare, that scheduling is horrible (already changed 3 times in two days, for a simple consultation appointment), and that over there, you are a "case" not a person.

I know what a chemo port is, how the surgery will feel, and who the surgeon is. I can compare possible treatments against those I've already had for potential suckyness.

And, most of all, I know that God will be with us through this ordeal. He was last time, He's here now. I've not had a bad night's sleep since my diagnosis. I'm about 90% at peace. I've already been approached by a minister friend about healing services, something that truly worked last time.

Last time, I was assured of victory quickly, but was Told I'd need to go through the process. Out of that came a book ministry that's touched easily a thousand people. A consulting ministry that's helped (I hope) dozens. Since 2006, I've been approached, like clockwork, every three weeks by someone needing advice. The conversation always starts: "My (spouse, child, parent, friend, co-worker, neighbor) has cancer and the doctors aren't listening to them, are giving them conflicting advice, don't seem to care, etc." If it went more than three weeks I got itchy, then would get 2 or 3 approaches in a week to make up for the gap.

So, this time, I'm wondering how He will do what He does best, turn bad stuff into good stuff. In that way, I can't wait!

Thanks to all, and keep the faith. We are.

KB

Day 2 August 15, 2012

Facebook Post 

Interesting factoid about cancer, round 2: It only takes 22 hours for the family to start cracking jokes about it! That's a healthy sign, I think. Now I just need my cancer comedian friend Kurt Erlenbach to start in on his horrible, tasteless cancer gimp routine.

Lots better morale today. Looking at treatment options, standard of care of Bendamustine/Rituxan is half as toxic and twice as effective as CHOP-R.

List of possible treatment options from google & Doc Sotomayor papers:

·         Velcade

·         Bendamustine/Rituxan

·         Dual Antibody Rituxan/?Mila???xan

·         Vaccine

·         Zevalin again

·         Bexxar

Day One August 14, 2012

Last Tuesday, Aug 7, had scan at Space Coast Cancer Center. Results received today. Dr. Levine, a personal friend, was very disturbed but as kind as always. Called Sandy, went back to work. She told the kids, I called my sister and step mom, told some co workers.

Facebook post

Dear Family, Friends, and Co-workers:

Back in 2005,6&7 I fought a battle with Mantle Cell Lymphoma. After pursuing every possible treatment option, including a bone marrow transplant, I have been cancer free since. Unfortunately, today I received the news that it's back. So, we start down that road again. This type of cancer causes no discomfort, and mentally I'm ready for another tough fight, so

really, it's more of an emotional drain on everyone. When treatments start, it's just like before. Any day you wake up with hair is a good one!

Last time, I put my learnings and experiences down in a small book, which has been distributed and used by literally hundreds of people. Today I remembered my own advice for Day One. Free downloads of Taking Vienna are on my Lulu storefront, along with two of my other publications. Not sure yet how I'll chronicle this one, but please know that my faith in God only gets stronger each day and with each trial. If you want to help, please pray for me and my family, work with your friends and family that are victims, and support the Space Coast Cancer Foundation and the Lymphoma Research Foundation. When the time comes that we need personal assistance in household or family matters, don't worry, we'll ask.

Yours in future baldness

http://www.lulu.com/spotlight/TakingVienna2008

 Facebook Post

And, because God is the conductor on the clue bus, while I require a billboard and/or baseball bat whack, here's a full double rainbow. They don't photograph well (and shouldn't!) but there it was. I rank rainbows just ever so slightly above caramel sundaes as my favorite proofs that He loves us.

Sandy called me while on her way to walk with a friend. Full double rainbow. I called Morgan and Holden out onto the driveway to share with me. God’s promise indeed. Every since the day my father died, and we had a stunning rainbow, it’s been my personal sign of His love. So, tonite, guess what?  Coincidence, I guess.

Welcome to Taking Vienna, both a blog and a resource for victims of cancers like lymphoma, leukemia, and myeloma.Taking Vienna is a book, a blog, and most of all, a philosophy. It grew out of my battle with Mantle Cell Lymphoma. A message of hope, grit, and advice for new and long term cancer patients, Taking Vienna is meant as both encouragement and a resource for those fighting cancer, and the people supporting them.

What does "Taking Vienna" mean? Here are a couple of quotes that inspired me to go public with my disease and life.

 “If you start to take Vienna – take Vienna!!”

Napoleon Bonaparte – on keeping focused on a goal, applying overwhelming force, and not getting distracted.

"What is our aim? ... Victory, victory at all costs, victory in spite of all terror; victory, however long and hard the road may be; for without victory, there is no survival."

Winston Churchill; 13 May 1940

 From 2005 to 2007, I fought this fairly rare and usually incurable form of lymphoma. Chemo, radio-immunology, autologous stem cell transplant, and artificial antibodies.Successfully going into remission, I was more or less drafted into a ministry and public service, acting as part of a network of "second responders", talking to victims and their families early in their battle. The book came out of my email-style blogging plus a lot of lessons learned as a medical consumer advocate.

Now, in August 2012, after 6 years in remission, I'm back in the fight. Two days ago, I got news that my cancer is back. This blog will be my way of communicating to my family, friends, co-workers, and fellow travelers how I'm doing, what I'm learning, and most importantly, how I'm going to take Vienna, again.

The book, along with others of mine, is available on Lulu for free download:

http://www.lulu.com/spotlight/TakingVienna2008


God Bless all of us as we journey together towards victory!

Kevin Berry
Titusville, Florida