Thursday, May 17, 2012

Destination...Tulane!

When we left off, I spoke of us going to meet with Dr. Hana Safah at Tulane in New Orleans. It seems that heading down there to get a second opinion for Elizabeth would be best - so that's what we did. We went to New Orleans on Tuesday afternoon and had a wonderful dinner at Grand Isle with my family (mom, dad, brother, sister and aunt). It was nice to have fresh fish - man, we miss that sooo much.

Our day at Tulane (yesterday) started early and we were treated as well as any persons could be treated. We met with Barry Marshall (VP of the transplant division) initially before meeting the nurses and doctor. Needless to say, my aunt Danita had the red-carpet rolled out for us thus making this very difficult time seem a little less stressful. We met with Dr. Safah around 9:00 and she went over everything from initial diagnosis to relapse diagnosis. We spent around 45 minutes discussing things with her - everything from the treatment options to her initial thoughts on our future plans. She - like any other doctor would - wants to become Elizabeth's primary care oncologist for now. She feels like she would be best served to have future chemo treatments and the stem cell transplant done at Tulane. After a little hesitation, we began to realize exactly why that was the case. She explained the stem cell treatment plan to us and specifically, the harvest procedure. During her next chemo cycle, Elizabeth will be given a Neupogen shot (which is similar to Neulasta). This shot is given every day in order to boost blood cell production - specifically white blood cells. Her blood counts will be monitored and the stem cells will need to be harvested at the right time, hence Dr. Safah wanting treatment to be performed in New Orleans under her supervision. It apparently takes 5-7 days after finishing the chemo regimen to get the blood counts to a level that is necessary for harvest. Typically, blood stem cells are located in the bone marrow. As I understand it, the chemo destroying the blood cells will be offset by the Neupogen injections. During the time that the new stem cells are actually in the blood versus the marrow, they will need to be harvested. Basically, we want to get the stem cells before the move back into the bone marrow so we have just a limited window to do so.

It looks like Elizabeth will be in New Orleans from June 4th-mid-June and will return to Memphis to have a scan done to ensure that the ESHAP regimen is working (shrinking her tumors). If she has a sensitive disease (i.e the tumors are shrinking) then the high-dose chemotherapy with stem cell transplant will follow. If all goes well, then Elizabeth will return to New Orleans in early July and will receive her high-dose chemo in the hospital (this regimen is BEAM). It is supposed to be pretty devastating but with the way she has handled ESHAP, who knows! She has just shrugged that off like it was no big deal. Heck, she is at work today - doing what she loves! I am constantly amazed at her strength, especially given the stories I had heard about ESHAP. It's pretty remarkable. Moving on...the high dose therapy will require about a 17-20 hospitalization - 7 days of chemo followed by the actual transplant. Once her blood counts come back to appropriate levels, then she will be free to go home. This is the good news. Bad news is that she really needs to stay away from the kids for the 3 months afterwards. I don't have to tell you what her reaction to that was. I think that was the only moment yesterday that really upset her - to the point of causing some crocodile tears! She loves our little angels but in the grand scheme of things - 3 months for a lifetime is a decent tradeoff, right?

Dr. Safah still has to finalize her evaluation and talk to Dr. Pallera to determine the best treatment plan, but what I just described is the initial plan for now! I hope to speak to both doctors by Monday so that we have a much better idea of what lies ahead, although I think I have a decent grasp on it so far. Dr. Safah didn't want to give us any false sense of hope but she thinks that if Elizabeth's tumors are sensitive to ESHAP then she has about a 60% chance of having a 5+ year remission with a really good chance of a cure! Having said that, that number goes down significantly if her tumors don't respond well to ESHAP. There are other options but ESHAP is a great regimen so we fell like she has a decent shot a getting a good response. Her itching has disappeared completely so that's a good thing. Dr. Safah also discussed with us that Hodgkin's is VERY sensitive to radiation so the tumors in her chest coming back so soon would be concerning IF they were included in the radiation field. If not, then there could be a chance that the lymphoma is just refractory and that more chemo will do the trick. When I looked at Elizabeth's scans, all areas that she had radiation, there is no sign of disease - it is confined to the chest and it appears to be away from the initial radiation field. I really am not sure what to think about all of this but I think that we will just wait to see what Dr. Safah and her team discover. She is having her radiologists review the scans and pathologists review the tissue slides to make sure that everything is confirmed from the initial diagnosis. She also stated that there is a chance that the lung involvement may be something other than lymphoma-related. I am not sure what the chance of that happening is but we haven't ruled it out yet. Fingers crossed that this cancer is strictly contained in the lymph system.

So, Dr. Safah really needed chest x-rays, blood work/tests, heart tests (ECHO, EKG), and lung tests (Pulmonary Function Test) done so that she could finalize her approach to treatment. Normally, this takes a while to schedule and is done over several days...well, not for us. She had everything done yesterday (and I am sure some strings were pulled for us that we are very thankful for). Her echo and EKG came back great (she has a strong heart - and we already knew that, right?!?). Her lung function tests came back normal so her chemo has apparently helped with the nodules in her lungs. We hope. Once all the blood work comes back combined with the radiologists and pathologists opinions, then I am sure that Dr. Safah and Dr. Pallera will hash out her treatment from this point forward. I can't wait to get some more clarification but so far, we feel very optimistic that she can be cured of this disease.

We made it back safely to Memphis after a very long stretch of 32 hours - 12 of which were in my truck. It was a mass overload of information but it was well worth our trip to see the facility and meet new doctors/people! For now, it looks like New Orleans will be a home away from home this summer - and that is a good thing for us because Danita and Grace both work and Tulane and will take extra-special care of her along with all of the great folks that we met yesterday. It was a blessing to be treated so well - and we can't possibly say thank you enough. Another benefit about Elizabeth being at Tulane is that our families are only an hour or so away. It will be much easier for her to always have someone by her side during this time being so close to our families. If the treatment was being done in Memphis (or Nashville - which is the closest fully-covered stem cell transplant center) then it would have been much more difficult to handle from a logistics standpoint. As we begin to travel down this new stretch of road in our lives, we can't help but be thankful that we have people who care so much about us at Tulane. It means so much to us and I know that she will be in great hands - and that is a comforting feeling.

To update everyone on how Elizabeth is doing...great! That is all that needs to be said really. She was up and out of bed on Sunday night (we took a mother's day trip to Kroger!!!) I'm a great husband - what can I say! Haha. Kidding. Anyway, the cytarabine didn't knock her down too bad and she is doing great. It's pretty amazing. She is back at work for the next week and a half. Then she will be off to Destin to enjoy a beach trip before the next chemo cycle. She deserves it and I am sure that she will have a blast! But to say that chemo will keep her down - it's just not possible with Elizabeth.

Thanks to all that have reached out to us during this difficult time in our lives. Your thoughts and prayers are appreciated. And as I told Elizabeth last night - what a story for her to share...beating cancer twice in 1 year. She makes me one very proud husband. Love her!

Thanks again everyone,

Scott


2 comments:

  1. Thanks for the update, Scott! Praying for you guys! Great news about treatment at Tulane. Not sure what you guys need help with at this point, but please keep me in mind if you need anything when y'all are in LA! Seriously, I'm available to drive Beth, help with the girls, errands, anything y'all need. Well, except home-cooked meals, I'm a horrible cook :-D
    Message me on FB or call my cell 405-8248

    Sending hugs, loves and prayers ~ Ms. T :)

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  2. Wow! I am awe struck! I am praying for you guys! The blogs are so inspiring...Elizabeth is a strong woman, and I know she will beat this! Scott, you are a wonderful husband! When I read the blogs, I can feel the love...it's palpable and radiates! Continue to fight, Beth! Keep us all posted! Nicole Laiche

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