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  • We were in Houston. It was the day of our appointment at MD Anderson Cancer Center (MDACC). Finally....the day we had waited for! I actually felt hopeful.....after all, this was one of the centers of excellence for Mantle Cell Lymphoma (MCL). I felt like I was in a desert and I stumbled upon an oasis.

    The first member of the team that we met with was the nurse practitioner. She took a history and physical, asked a lot of questions, and performed a rather thorough physical exam. She told us the Dr. would be in shortly to meet with us and then she left. I could hear her in the hall outside the door briefing the Dr. There was a knock on the door and he came in. After a perfunctory greeting, he asked a few questions, and then proceeded to outline his plan of treatment.

    I made notes of the conversation in my own "shorthand". I have to take notes otherwise I won't be able to remember a thing. My memory sucks.

    As the Dr. spoke it became clear that the treatment options were limited. VERY limited. What he recommended was an intense form of chemo (HyperCVAD with methotrexate and Ara-C) which would require us staying here in Houston for about 8 months! He also recommended a Stem Cell Transplant (STC) once Jimmy was in remission. The reason we'd have to live in Houston is that my husband would be in the hospital for 4-5 days in a row getting chemo and then the week following chemo, there was a strong possibility he'd end up back in the hospital due to complications of chemo! The chemo would be given every 3 weeks unless there were issues that contraindicated it at that time. And the only clinical trail available to him was this same type of chemo. That's something I didn't quite understand. Nor did I bother finding out more since it didn't appeal to me. Either way, he would have to undergo further testing to even see if he qualified.

    I was dumbfounded with this plan.. It just wasn't what I was prepared to hear.

    As the meeting progressed, I could see my husband getting more and more dejected. Hell, I was getting dejected! I didn't realize how hopeful I had been until I experienced the plummeting low that came with the realization on how truly limited our choices were. I had had such high expectations and now they were shattered!

    The Dr finished his spiel . Then there was an opportunity for questions. During my research I learned that there was no consensus for treatment of this type of lymphoma. What I did find was a drug regimen that appeared to be less toxic than what was offered both here and from our local oncologist. It was called R-Bendamustine (Treanda).When I mentioned the protocol, the Dr was familiar with it but told us there wasn't enough data on it and due to my husbands "age and advanced staging (Stage 4B) he needed a more intense front-line approach." We were certainly aware that there wasn't enough data but were still willing to try it. For God's sake, my husband has an incurable form of cancer. It's not like we could do much more damage, no matter what...and in fact, this protocol was LESS toxic than any of the ones offered to my husband. But this Dr. clearly wasn't interested in that as an option for my husband. End of discussion.

    The meeting wound down, and after a few more questions on my part to clarify things, he left and then the social worker came in and met with us. She was personable and a genuinely kind person. She even shed some tears with us. I remarked that I couldn't imagine how people were able to disconnect from life for 8 months and relocate to get this treatment. It just seemed like such an insurmountable obstacle especially if you had kids still living at home. She told us to think about it, discuss it with family, and offered to assist in finding housing if that's the route we chose.

    Before we left, we were given another appointment to return in one week for a follow-up meeting with the Dr. takes their research personnel a week to review the pathology slides that we had hand-carried. We finished up our meeting and then glumly returned to our hotel room.

    Once we returned to the room we re-hashed the meeting and it was clear that we had the same impression of the doctor. There was just no connection there. His delivery of information seemed like it was done by rote. I don't need someone to hold my hand or sugar-coat things but I would like to feel that the person treating my husband (or any family member) cared enough to see him as an individual and not just another number.

    Another factor that concerned me was that my husband has a sensitivity to quite a few meds and I wasn't convinced that he could tolerate something as toxic as this intense R-HyperCVAD and the other possible chemo agents that may be added. Plus, I could see that psychologically the thought of having to be away from home for that length of time was already upsetting to him. And that's part of the battle. He thrives on the comfort of his home, family, and familiar routines. At the start of this nightmare he has always stressed quality of life is more important to him than quantity

    Jimmy was as dejected as I was. While he called the office to touch base and see if anything needed his immediate attention, I paced the room, and then looked out the window. I was restless, unsure what to do so I pulled out my laptop and posted a synopsis of the days events to the MCL on-line discussion group This was my 1st time posting; usually I have been just a silent observer but now I needed some guidance. There was way too much to process and I had no idea what to do.

    Almost immediately a young (34 yr old) patient replied and said her Dr at MDACC recommended the very same regimen that we wanted! This very same regimen that the Dr. we just met with said there wasn't enough data on!!! I recognised the Dr.'s name that was posted. Before we came to Houston, but after our appointment was already set, I had seen this Drs. name in other email threads. Everyone had great things to say about him. I was pleasantly stunned at this turn of events and excitedly shared the email with my husband once he got off the phone. I could feel a glimmer of hope begin to flicker within me.

    Then I came to a decision. I decided that tomorrow we would go to the Patient Advocate office in person and switch to this other Dr. It was already too late in the day to do anything now. Once we had a game plan, I felt better. I also contacted our local oncologists' office and made an appointment to see him on the Monday after we got back. I wanted to meet with him again and discuss the R-Benda protocol that I had researched.

    That night I slept fitfully, tossing and turning, and going over the days events in my mind. Whenever I thought of the Hyper CVAD my gut didn't feel right. When I thought about the less toxic regiman, it just seemed like a better fit for my husband. I had done enough research to know that ,anecdotally, those on the MCL discussion group that had undergone this intense treatment suffered all kinds of complications and neuropathies. Things that I didn't even share with my husband because I know he would have found it too distressing and I was fearful that he would just want to give up. Going with the less toxic protocol just seemed the the right thing for my husband.

    The next day we went to the Patient Advocate office and met with the person in charge. We expressed our concerns and reasons for wanting to switch Drs. We told him nothing against the Dr. but we just had no connection with him. Maybe it was just his personality, I don't know and I don't care. I just feel that it's imperative that the person you're entrusting your care to, your life, has some interest in you as a person. The Patient Advocate was very understanding but forewarned us that it may not be possible to switch since this Dr. was very popular, often requested, and had taken on a lot of extra patients. He said he would contact us but chances are it wouldn't happen for a few days. This certainly wasn't what we wanted to hear since we were leaving the day after next, but we were hopeful nonetheless.

    As it turned out, we never did hear from the Patient Advocate until about 2 weeks after we had returned home. At that point, we had canceled our follow- up appointment and already decided on a treatment plan.

    I don't mean to upset anyone or sound like I'm judging people on their choices as I'm fully aware that the majority of people hold MDACC in high esteem. I appreciate that! MDACC has done a lot of good for other people but during our 4-day stay there, we realized this was just not the right fit....for us.

    As far as our experience went, I found it to be pretty disorganized. Had we been told to be sure that the pathology slides and bone marrow biopsy slides were there at least a week prior to our appointment then we wouldn't have had to bother with a follow-up appointment. We were not given this information and only found out once we were there. Also, the day before we flew out , my husband had a Power Port placed for chemo access. When we mentioned it to the Dr, he said they don't use them there! They give chemo intrathecally (in the spine).

    There were several other events that occurred during our stay that just made us realize that this was not the place for us. As in anything in life, there is no one-size-fits-all solution. You just have to do your research, rely on your knowledge, ask questions, trust your gut , hope and pray that what you decide is the right choice, and do what feels best for YOU..
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